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DAN JONES

Transforming Understanding of Neurodiversity & Hypnotherapy

  • How Democracy Can Slide Into Autocracy: A Psychological View

    January 26th, 2026

    Professor George Estabrooks worked at Colgate University, New York. In 1943 he wrote a book, Hypnotism, in which was a chapter titled This Man Hitler where he shared his thoughts about how Hitler was able to achieve what he did. In 1957 the revised edition of Hypnotism was released. The chapter was also revised and now titled Hypnotism and Human Affairs. This revised chapter was very different. I feel that both chapters have value to read.

    Below I have shared what Estabrooks said the stages are for a dictator to do what they do and then how he described this applying to Hitler. All of this is from the original 1943 book, which goes into more detail on this, then I share some information based on what Estabrooks said in the 1957 revised edition, where he also discussed how you can tell if you are being presented with information designed to manipulate you, and a few other bits.

    I am sharing this because there are disturbing parallels to what is reported in the media about what is happening in the USA today and the actions of Donald Trump, which I find upsetting to see.  The footage of the murder of Renée Good followed by the immediate misinformation that followed from officials was upsetting enough, but the footage of the murder of Alex Pretti and the misinformation which followed this is what has made me feel I need to share this information.

    From an external perspective here in the UK, it looks very much like what is described here is unfolding in the USA and maybe awareness of how this happens can help in someway, whether that is in how politicians around the world deal with Donald Trump and others in his team, or in how US citizens avoid being drawn into this ‘reality’ shaped through an emotional lens of fear, hate and anger.

    The This Man Hitler chapter begins: “As the reader will recall, we have several times made the statement that Hitler was the world’s best hypnotist.” Estabrooks continues on to qualify that statement and give some explanation. He first states that ‘suggestion’ has been defined as “the acceptance of a proposition in the absence of logically adequate proof.” And then proceeds to say “let us take an example which may apply to any one of us in the next five years and work back to our explanation from that.”

    Estabrooks then gives a hypothetical example about chatting to a neighbour friend who mentions that he has heard that another neighbour is a German spy. You like this neighbour and don’t want to engage in this conversation, so the conversation ends. Hours later, that same friend arrives back at your house, they have been drinking and are highly emotional. They bring up the neighbour again, stating “we are at war with Germany, why wait until he does his dirty work, let’s take him out.”

    Estabrooks questions, “what happens next?”

    He says, let’s assume you like to be fair-minded and to keep out of trouble, so you don’t go with your friend, but you sit at home worried and confused about the whole situation. Then a few hours later you hear a commotion outside and see that a mob has formed outside that neighbour’s house. You head outside and ask someone what is happening, they explain that he is a German spy. You ask how they know, and they say that everyone says so and they tell you to come with them to get him.

    Estabrooks asks “What do you do?”

    He states that, reading this, you probably think you would do the right thing – try to calm the mob, talk reason etc. He shares that in reality, you will likely hang around the outside of the mob, feeling unhappy with everything, but making no actual attempt to stop what is happening. After a short while, you start to question whether perhaps this person is a spy and why shouldn’t he be stopped? You don’t yet get involved, but you are now not ‘against’ them doing what they are doing.

    Estabrooks shares that what studies show often happens next is that your passive acceptance of what is happening changes to active participation, you become one of the mob. He states: “reading this book, such a statement may seem absurd, but we can assure you it is anything but absurd. The mob has a fatal habit of engulfing those who come merely as passive spectators.”

    He then goes on to state why this is the case, stating that the first emotion you would likely experience is fear. Any attempt to stop the mob would put your life at risk. High emotion increases suggestibility. You may become torn between wanting to do the right thing and being scared to do the right thing. This increases your emotion levels further.

    Being around the mob makes you more susceptible to emotional contagion – as social creatures, when we are around others, we draw on each others emotions, we laugh more at a funny movie when with others, we cry more at sad movies, at sporting events, people share in the emotions of the experience, etc. We feed off of each others emotions and ‘catch’ the emotions of the group.

    We experience a restriction of the field of consciousness. We aren’t paying attention to lots of different things with our attention jumping all over the place like in normal everyday life, we are focusing on one thing – “the roaring of the mob,” or the “wild exhortations of the leader.” Which blocks out all other stimuli. Nowadays we have the likes of our Social Media feeds becoming an echo chamber where we build up our emotions and self-restrict our field of consciousness.

    At this point the person is already highly emotional and narrowly focused, and then suggestions or ideas are being presented in a highly emotional way, making them more effective – why do we have sad puppies and lonely elderly, etc., in charity adverts? – It evokes emotion, the narrative told during the advert focuses attention (restricts field of consciousness) and then the suggestion to donate and an emotional hook of why you should do this is given. This is done because it works. – and then you start getting an avalanche where the situation creates emotion-this emotion makes us more suggestible-this increase in suggestibility makes us more emotional-which makes us more suggestible and the cycle continues.

    Estabrooks continues on, that there are two other factors which occur. One is social sanction (and a feeling of omnipotence), this is that we unconsciously feel a desire to conform to a group and accept the norms of the group, so we can do bad things and at the time not think of them as bad. This social sanction can give a feeling of omnipotence – everyone agrees with this behaviour, it is what everyone else is doing, so it is okay.

    The final factor is removal of inhibition – you are emotional, suggestible and everyone around you (in your ‘group’) agrees and approves of a specific way of behaving, meaning that you are more likely to do acts you would never dream of doing in your normal state.

    I remember watching interviews with people after the 2011 London Riots when people from the City were saying they didn’t know what came over them, they just suddenly found themselves joining in, looting etc. This is a common thing, where people act very out of character and can’t explain why and can even find that recalling it is a bit of a blur (as if they ‘weren’t themselves’), when the reason is they fell prey to the mob influence.

    After explaining how this works and the stages, he continues with mapping this onto Hitler at the time (and I feel concerned that this sounds scarily familiar today). Estabrooks starts by pointing out fear, that it would be a brave person in Germany to stand up against the leader and voice any criticism. He writes (and this is in 1943) about how American’s first hearing about concentration camps and what was taking place in Germany dismissed it as ‘propaganda’ rather than believe that it could be true. He states “nothing is more difficult than the education of the educated”, that people felt those sorts of behaviours were confined to the past and not something people would do today.

    Estabrooks continues that fear is a powerful emotion, but is largely negative in its actions. it works well to silence opposition, but it isn’t a good foundation to build action on. He says for that, you use hatred, whether real or imagined. He points out that hatred is dynamic, it can make people blindly open to all sorts of suggestions, just pick a target or targets for the hate and add to that a myth of superiority and patriotism and you have a powerful, dynamic emotion that can’t be stopped by the voice of reason or temperance.

    Estabrooks then gives some examples about how this was done, mentioning that there was some German research which showed Nordic hens are superior to Mediterranean hens. Estabrooks describes this study as “the purest trash…but terribly potent if fed to an inflamed people.”

    He says that the scientists would have been under no delusions as to the weakness of this research or to their own fate should they refuse to obey orders.

    Another example given is of a composer who wasn’t an ‘Aryan’, but his works sold well and so for financial reasons it was in the best interests or Hitler et al., to have this man in the country, so they said that anyone with at least 75% Aryan blood is officially an Aryan. They took his blood and stated that he had 76% Aryan blood. Estabrooks continues: “There is no test known to science by which we can tell Aryan blood from Mediterranean or Jewish, but that is quite beside the point. Such results published with the stamp of official approval, are just as true, just as potent as a genuine scientific statement in so far as they count in arousing public opinion.”

    Estabrooks then talks about Hitler’s control of the press and radios (obviously now that would be the press, media platforms and social media, etc.) to restrict the fields of attention and elicit emotional contagion, stating “if we have control over the press and radio we have a tremendously potent weapon.” You use the press and media to focus on your own superiority and patriotism and add to this in every possible way a direct appeal to the strongest emotions – fear, hatred and anger.

    Estabrooks explains that in a democracy you need to educate public opinion before a government can take drastic steps and uses the “slow awakening of the United States and Great Britain to their danger.” as an example, stating that “people may well condemn the leaders for the state of unpreparedness in which we found ourselves. We have to blame someone and we always condemn the government…but if [they] had dared to advocate a proper rearmament program [they] would have been branded as war-mongers and might very easily have been expelled from office.”

    He continues, that a dictator can control the press and media etc., and can determine what line of action he will follow. He can “reverse his field” at a minute’s notice. He can whip up his people to fanatical hatred for one group of people and then suddenly change his tactics completely, overnight shifting ground stating that that first group are “splendid people”, it is really this other group that are the problem, and the dictators followers accept this, like hypnotic subjects accept being presented with a change in hypnotic suggestion. Then overnight, the dictator can change back to that first group being the threat or problem.

    Estabrooks continues: “We can readily imagine the chaos in this country if tomorrow the President should suddenly announce that our real friends were the Japs, that we agreed to let them have Australia and the East Indies, while it was our obvious duty, because of American superiority, to take Canada and Mexico at once, with a “protectorate” over all the Latin American countries – until we could really absorb them.”

    Estabrooks then shares similarities of Hitler’s rallies and stage hypnotists performances, before moving on to the final areas of mapping this onto what Hitler was doing. He shares about social sanction and a feeling of omnipotence, and the realise of inhibitions. Sharing about building up the illusion of being superior and how ‘you’ are the one being hemmed in and persecuted by all other groups, but it is their “God-given duty to rise superior to these circumstances and rule the world.”

    This gives approval or social sanction from the group for taking action, giving people the mindset that taking action that is in-line with the group, the only group worth considering, is justified. This gives people permission to be released from all inhibitions in the name of the group and the goal.

    He continues on, describing ‘dynamic leaders’ who throughout history have done the same sort of thing, stating “Unfortunately in most of these cases, as modern psychology could point out, the leader was definitely abnormal, neurotic or even insane.”

    The chapter then goes on to examine Hitler (in relation to his claims and how none of them match with facts), before mentioning that Hitler may have had a basis for complaint around The Treaty of Versailles, however at the point of his invasion of Czechoslovakia every point in the treaty was either settled or on its way to solution and had he not invaded, “he might easily have become Europe’s greatest statesman, executing both a United States of Europe and a new world order without shedding a drop of blood.” Before stating “But, as one writer puts it ‘that sort of genius does not have that sort of genius.’” Stating that they rapidly learn that they must appeal to emotion, not to reason, and that it is much easier to use hate and fear, than love and understanding. “[With] hate or fear, reason becomes our worst enemy.”

    Near the end of the chapter, he wraps up with “The leader gets caught in a hopeless and vicious circle. He achieves his end by playing on man’s lowest emotions. These ‘cruel, brutal and destructive’ instincts cannot be satisfied. Their very nature must become more and more all consuming, the fires must burn ever more fiercely. Hitler and his followers can no more restrain their thirst for power and revenge than can a hungry tiger restrain himself in the presence of a lamb.”

    In the 1957 edition of Hypnotism, the updated chapter, now titled Hypnotism and Human Affairs also describes the above focus the dictator gets people into as a monomotivational field, a state where “his ideas, and his ideas only are to be considered” and where his followers have “only one line of thought, his line of thought.” That his ideas are “few, simple and that no-one is allowed to question them.”

    Estabrooks states that for those following the dictator, it doesn’t occur to them “that there are two sides to an argument. Or rather, there are, indeed, two sides to any argument: his side and the one that’s wrong. If you are living under a dictator, you are perfectly free … to do as you are told.” And continues on “If this type of freedom does not appeal to you, then you are certainly free to say so … and take the consequences.”

    He asks the reader, how can you tell if you are making a good choice over who to support? And states, is the person promoting democratic ideals, or trying to rally people up or evoke fear, hate or anger? He states that the US has “the world’s most intelligent electorate,” and “our politicians are a superior group.” However, he then states, “when you stop being better, you stop being good” and that electing a potential dictator, “you will make that mistake once only. From then on, he will take care that your mistakes are always in his favor.”

    Estabrooks suggests that when you hear a politician speak, you are either for or against them. He recommends taking a moment to ask yourself why? Were they appealing largely to your reason, or were they appealing largely to your emotions, especially on areas such as class, privilege, race or religion, as these are often some of the easiest areas to evoke emotion.

    Another psychological factor worth considering here, which Estabrooks doesn’t cover directly in these chapters, is conformity. This becomes particularly important when leaders, officials, or professionals present a confident narrative about events that conflicts with actual observations. In such situations, many people don’t defer to their senses, but instead defer to the group. These people aren’t unintelligent or dishonest, it is just that powerful social pressures shape how humans decide what is ‘true’ (other notible studies relating to the current US situation are the Milgram Experiment on obedience to authority, and the Stanford Prison Experiment on how quickly people adopt roles and take on situational power).

    Psychological research has shown that people often go along with an obviously false consensus for two main reasons. One is normative influence – the desire to fit in, to be accepted, or to avoid ridicule, isolation, or social punishment. The other is informational influence – the belief that the group, or those speaking with authority, must know something that the individual doesn’t. When professionals, institutions, or leaders speak with certainty, people may assume that their own perceptions are wrong rather than consider that the group could be wrong, especially if they are a part of that group and need to maintain their internal narrative of ‘reality’ and it is their leader and people in positions of authority giving them the information.

    This effect was demonstrated in the well-known line-judgement experiments conducted by Solomon Asch in the 1950s. Participants were asked to judge the length of simple lines, a task with an objectively correct answer. However, when confederates of the experimenter deliberately gave the wrong answer, almost three-quarters of participants went along with the incorrect majority at least once (in any given trial about a third of people went along with the majority, about 25% never went with the incorrect majority, and about 5% of people always went with the incorrect majority).

    Many later reported that they knew the group was wrong, but didn’t want to stand out, or assumed the group must be seeing something they weren’t noticing, and even among those who never conformed, in many cases reported finding this difficult, feeling an impulse to want to conform, and almost doubting themselves and releaved when they found out what the experiment was about and that they didn’t go along with consensus, but continued to stick to expressing their own thoughts.

    What is interesting is that the presence of just one dissenting voice dramatically reduced conformity. Knowing that someone else also disagreed made it far easier for individuals to trust their own perception and speak up. This helps explain why suppressing dissent, discrediting alternative viewpoints, or portraying critics as immoral or dangerous is such an effective tactic when shaping public opinion, but also why it is so important for people to stand up and be that voice, especially if they are known to be from within the group they are speaking out against.

    In many cases, people respond to this pressure through compliance – publicly agreeing with a narrative they privately doubt. Over time, however, repeated exposure, emotional reinforcement, and social approval can lead to internalisation, where the individual comes to genuinely accept the group’s version of events, even when it conflicts with observable facts. At a collective level, this can contribute to groupthink, where questioning the narrative itself becomes unthinkable, and where incorrect or even dangerous beliefs and actions are normalised.

    This matters when emotionally charged events are followed by immediate, authoritative explanations that frame how those events should be understood, particularly when alternative interpretations are dismissed or condemned or observable facts are denied. In these situations, conformity arises because of fear, uncertainty, and social pressure.

    There are issues going on everywhere, but it is within the USA that this currently seems to be most concerning and furthest along in a negative direction from where the US has been for about 80 years, standing for freedom, truth and justice. It has been a place which appeared to pride itself on its democracy and checks and balances, yet now it seems to be on track towards an autocracy.

    The US kicked us Brits out, not wanting to be ruled by a King, or taxed without representation, yet, it appears they are heading back to this again, with Donald Trump using tariffs to place taxes on US citizens without giving them a say, and although being voted in, acting more like a ruler now he is in power, rather than a democratically elected official engaging in a democratic system, upholding the ideals of a democratically elected leader, both towards previous leaders and leaders from other countries. He is also showing a lack of respect for other countries rights to independence and even threatening to potentially take other countries by force and behaving as if he is above the law.

    I hope that things improve and the USA finds its way back to being great again.

  • Clarifying the “Vaccines Cause Autism” Myth – Taking a Deep Dive into the Evidence

    October 24th, 2022

    “Vaccines cause autism” is probably one of the main things people tell me when they meet me and hear that I am autistic. I find it very frustrating because obviously the research overwhelmingly points to this not being the case. 

    I did a radio interview with a Spanish radio station a couple of years ago and one question that came up – and one that comes up regularly in talks and radio call-ins that I have done, was around vaccines and how they cause autism. I was very firm about how that is complete rubbish and has been heavily researched since the claim was made and has been thoroughly debunked. 

    Many people I know who are into healthy living and the whole ‘everything should be natural’ thing (which obviously is a good direction to take where we can) are also anti-vax people, they believe that vaccinations aren’t natural and cause autism and are untrusting of science, believing that drug companies benefit from us taking vaccines and so that is why all the evidence is showing that vaccines don’t cause autism, and that the people to listen to are the ‘brave few’ who stand up and tell the truth against these big companies. Many anti-vaxxer’s also often seem to believe that anyone standing up saying they are wrong, that vaccines don’t cause autism are either sheep who have never done their own research (when usually it is the other way round, anti-vaxxer’s have not done proper research), or must be working for ‘big pharma’.

    During trials and research into why and who had autism, did these studies include people who were never vaccinated, are there people who are on the autistic spectrum who have never had a vaccination?

    There are lots of people out there with autism who haven’t been vaccinated. Autism is as prevalent among unvaccinated people as vaccinated, so vaccines have nothing to do with autism. I, for example, never had the MMR vaccine and I am autistic. Most autistic adults born before the late 1960’s won’t have had the MMR vaccine and there will be people since then who either didn’t have the vaccine or had the three vaccines separately.

    “In Japan they don’t use the MMR vaccine and autism rates are the same as they are in the rest of the World.”

    Andrew Wakefield who suggested a link between autism and vaccines had a financial incentive for this to be the case, he had patented an alternative vaccine for people to take rather than the MMR vaccine which was his recommendation when suggesting people shouldn’t take the MMR. Wakefields research was seen to be fraudulent, he also issued a statement of deliberately falsifying research and was struck off from practicing medicine in the UK.

    The inoculation rate for MMR in the UK was 92% before the Wakefield research; after publication, the rate dropped to around 80% (despite rates of those having the MMR vaccination being lower now, rates of autism diagnosis have increased (this is due to improved awareness and diagnosing, not that more people are autistic than before), if anything, if the MMR vaccination caused autism, you would expect a decrease in rates of autism following the significant drop in people having the vaccination, not an increase). In 1998, there were 56 measles cases in the UK; by 2008, there were 1348 cases, with two confirmed deaths, and there has also been a rise in mumps cases. People ignoring all of the scientific research and the fact that no-one has found a causative connection and the fact that the original person who suggested it falsified information to make it look like there was (his actual research carried out by a team of 12 researchers said they found no causal link between the vaccine and autism, but Wakefield made a video claiming there was and started pushing that idea) is terrible, it has led to increased sickness and unnecessary deaths, and now there seems to be a community of pseudo-scientists feeding the idea, which is then getting celebrity backing and unfortunately people follow celebrities opinions more than scientists opinions and the emotional nature of the subject is just keeping people trapped in a cycle of believing a lie rather than focusing on what can be done to help those who are autistic and accepting it is who we are, we were born autistic and will die autistic, nothing in-between caused us to be autistic.

    Vaccines contain mercury, aluminium and other poisonous substances, couldn’t these  cause autism?

    None of the childhood vaccines contain poisonous substances at a level which can cause harm to people and most don’t contain poisonous substances, full-stop. For example some vaccines need to contain formaldehyde which makes sure it is preserved and safe for humans. Vaccine ingredients don’t cause autism.

    The substances are lower than in most other products people consume and what is ingested from the environment, and all the substances have a purpose, for example the Mercury containing compound (thimerosal) that used to be in the MMR vaccine in the past and is in no vaccines nowadays in most countries was to prevent fungus (and another point here is that an element in a compound is different to the element on its own, for example sodium isn’t good for you and chlorine isn’t good for you, yet salt (sodium chloride) is required for health and is sodium chloride (both sodium and chlorine together). Obviously too much salt is bad). Aluminium is in some vaccines but the levels are lower than naturally found in plants and animals that you eat and children get more aluminium from drinking breast milk than from their vaccinations.

    Most things we consume (including things like vitamin C, oxygen, water, etc) are poisonous if the dose is too high. In fact nearly everything is, so when people point to certain substances in vaccines and how they are dangerous, they have to consider the amount of that substance and things like what happens with that substance in the body. If you ingest a substance at a very low dose, way below the safety threshold and it takes a week for your body to break that down and perhaps expel that from the body so that none of that substance is left in your body, then this dose is a safe dose and won’t cause you long term harm because in a week it will be like that substance was never there.

    Aren’t scientists just hiding the truth so that they can make more money for pharmaceutical companies?

    There seems to be a tendency, that I think is growing because it is so easy for ideas like this to spread through social media, especially if something can absolve guilt or responsibility from others – like a parent feeling ‘guilty’ that they had a ‘disabled’ child, but if it was a vaccine then it wasn’t their fault, it was the drug companies or the governments etc., and so they can channel their anger at that and what ‘they’ have done to their child. As humans we have a desire for meaning, we want answers, and when you know you are a parent who does your best and deeply loves your child you want to know why they are the way they are, you rightly know you didn’t do anything wrong to cause it, so you look for an answer that makes sense with your experience – like a child showing autistic symptoms around the time they were vaccinated (especially with regressive autism symptoms, this is a common time those symptoms show. 

    Autistic children possibly have abnormally fast brain growth over the first couple of years of life, and those who experience regressive symptoms seem like they might have aggressive-pruning occurring after this rapid brain growth. Autistic people often seem to have too many synapses, which makes sense having too many connections and likely over-sensitivities, but some areas of the brain in a percentage of autistic children could undergo excessive pruning causing regressive symptoms which for some may last or be severe, for others they may last but not be too severe, and for many, especially with the right support, they may improve).

    People are very good at misinterpreting data, so most people who don’t get their children vaccinated will have children who don’t have autism, but it isn’t the lack of a vaccine which led to their child not being autistic, it is that this is statistically what would happen, that most people aren’t autistic, so most children won’t be autistic whether they were vaccinated or not. Also mistaking two events happening near each other as one causing the other – it just happens that vaccines are given at a time when autistic traits are likely to start being more noticeable, it doesn’t mean vaccines cause autism, it just means vaccines are taken about the same time as autistic traits become more pronounced. 

    I have had people tell me maybe I am autistic because of vaccines or because of a vitamin deficiency or because of unloving parents, etc. Rather than people just accepting me for who I am, which is what I would prefer people to do. I was born autistic, I developed autistic, I will live autistic and I will die autistic. Vaccines, vitamins and parental love or lack of love didn’t play any role in me being autistic.

    If someone is interested in doing their own research it is important that they look at peer-reviewed studies, consider the strength of evidence for and against something, that you look at the form the evidence takes, as not all evidence is weighted equally, for example, individual testimonies should lead to researchers perhaps asking questions and looking at the evidence and carrying out studies, but testimonies aren’t strong enough evidence in isolation. For example, many self-made millionaires or other highly successful people, whether musicians, actors or even YouTuber’s etc, say they ignored those who said they couldn’t achieve what they wanted, that they just had drive and motivation and kept following their dream. Unfortunately, this is also the process for failure, it is just that only the successful people talk about how they became successful doing this.

    Likewise, with vaccines, there are many more people who have had their children vaccinated and their child isn’t autistic, so they don’t say anything or think anything of it. This doesn’t in itself mean that vaccines don’t cause autism in some children, what it does is suggest it could be worth looking at the data and carrying out studies to find out the truth (for example, a hypothesis could be that certain children with specific genes react to a compound in a vaccine in a way which triggers an epigenetic change which causes autism in those children – this could be a hypothesis of researchers, so they may look at the data and do research and see if this is true, but firstly they need to see if it is true that more people who receive vaccination are autistic than the percentage of people among those who aren’t vaccinated. If they can identify that this is true, then they would hypothesise what could be going on.

    Obviously when scientist have done this, they find there is no difference and so they don’t have to look at how a vaccine may cause autism, because they know autism isn’t more prevalent among vaccinated people vs unvaccinated). It is known that signs of autism often begin to show around the same time as children have their vaccinations. This doesn’t mean the vaccines cause autism, they just happen to occur around the same time as each other. There are many more children whose social skills and language skills significantly improve at this time, so given that within vaccinated children this is the most prevalent outcome it could be argued that maybe vaccines cause an increase in social and language skills. 

    Clearly people would argue that this is stupid, I am just talking about children developing normally and this has nothing to do with vaccines, yet they would argue that the autistic children are somehow impacted by the vaccine despite the fact that we know autistic people are born autistic, just like non-autistic people are born non-autistic, vaccines have nothing to do with this. Vaccines causing autism doesn’t explain all of the autistic people who have never been vaccinated or never received specific vaccinations. I didn’t have all my vaccinations as a child, because of this, in high school I had measles. 

    Vaccines didn’t make me autistic. Vaccines causing autism also doesn’t explain why it should be that the same percentage of people are autistic among those who have been vaccinated as those who haven’t. If vaccines cause autism then there should be a higher number of autistic people among vaccinated people compared to unvaccinated people, there would also need to be a testable hypothesis (as mentioned above, and this would only need to be done once it is identified that a higher percentage of vaccinated people are autistic compared to the percentage among unvaccinated people) about what the process is by which vaccines cause autism, this can then be tested and either confirmed or debunked.

    Isn’t the Bailey Banks vaccine court case or the Hannah Polling case evidence that vaccines cause autism?

    It doesn’t take much research to discover that this isn’t evidence vaccines cause autism. In the title of the ruling in the court document the PDD (Pervasive Developmental Delay – which is what people are focusing on as being the ‘autism’ caused by the vaccination) is described as ‘non-autistic developmental delay’. Neurologist Dr Ivan Lopez diagnosed Bailey as having developmental delay, but that it wasn’t autism because the developmental delay was probably caused by acute demyelinating encephalomyelitis (ADEM). Bailey’s pediatrician acknowledged that his use of the term autism in diagnosing Bailey was used merely as a simplification for non-medical school personnel and that Pervasive Developmental Delay is the correct diagnosis. Another pediatrician said Bailey’s condition “seems to be a global developmental delay with autistic features as opposed to an actual autistic spectrum disorder.”

    The case was about proving whether the MMR vaccine could cause ADEM and whether ADEM could cause PDD (not autism, although the diagnosis the pediatrician had given, as mentioned above was PDD-NOS which is a diagnosis that comes under the umbrella of Autism Spectrum Disorder, but as mentioned, the term was used merely as a simplification. It is also the case the PDD isn’t a diagnostic condition, so to give a diagnosis the likely closest condition would be PDD-NOS).

    The argument was that the MMR vaccine can cause ADEM. In a recent study there was no connection found. From researching, there appears to be no current evidence of the MMR vaccine causing ADEM and so if it does it is extremely rare, in the one vaccine where a possible association was found the rate was around 1.16 cases of ADEM per million vaccines administered, so any possible association with the MMR vaccine would be rarer than this (some places still quote a maximum rate of 2 cases of ADEM per million MMR vaccinations, but the research seems to point to this just being a conservative ‘worst-case’ amount based on reporting). It would likely be one person experiencing ADEM in many millions of people vaccinated.

    The next step is whether ADEM can lead to PDD. This is also likely to be rare if it does. There is information about how perhaps as many as 3 in 10 people who develop ADEM can have motor deficiencies and short-term, people can experience neurological deficits. These usually improve over a period of days to months, but a minority of children can be left with mild to severe neurological impairment. So, although there is no clear evidence of PDD being caused by ADEM, it could be that it could occur in rare instances. This is what was concluded in the court case, that there is above 50% chance that in this case the vaccination had caused the ADEM which had led to PDD. This is just one case and this is a court judgement not a scientific study. It even says in the report that these claims were made with no supporting scientific evidence, but it was still felt that what was being proposed was plausible.

    Just to put all of this into perspective, if you get measles you have a 1 in 1000 chance of getting ADEM, so even if there is a conservative estimate of getting ADEM from the MMR vaccination of 1 in 1 million, that means that a child receiving a vaccination has a 1 in 1 million chance of getting ADEM and off the back of this, a very small chance of developing PDD, so the chances of this happening to your child would be very unlikely. Or if the child doesn’t get vaccinated and if they get measles then they have 1 in 1000 chance of getting ADEM which is significantly more likely than it would have been with vaccination and so even though PDD would still be unlikely, it is a more likely outcome than if the child had just had the vaccination, and this is just with measles. Rubella leads to developing ADEM in around 1 in 20,000 cases. If most of the population is vaccinated then rates of people getting measles, mumps or rubella are low, but the more people who don’t have their children vaccinated, the more those children will get measles, etc., and the more chance a child has of then having ADEM. So, rather than anti-vaxxer’s reducing the chance of their children being autistic, if they believe that ADEM can lead to PDD (and believe from this case that this means ADEM can lead to autism) then an unvaccinated child is at greater risk of becoming autistic compared to a vaccinated child, especially if significant numbers of children go unvaccinated leading to an increase in cases of measles.

    The trouble with using court cases as evidence to support the idea of vaccines causing autism is that they aren’t making judgements based on whether the vaccine caused autism, but on whether a plausible mechanism for how this could happen is proposed and there is a reason for this. This article stated: “Initially, the standard used by the Court to assess causation was “a preponderance of evidence.” Using that standard, scientific evidence was generally held in higher regard than testimonial evidence, even though the argument for vaccine-related injury might appear to be plausible. Several years ago, however, the Court changed the standard used to one simply of “plausibility.” Using that standard, the Court might rule that a particular injury case was vaccine-related if a plausible biological argument could be made that the injury might have been caused by a vaccine, even though researchers of sound epidemiologic studies identified no evidence of such a relationship….For many who are hesitant about giving their children recommended vaccines, [that] this ruling is seen as an admission by the U.S. government that vaccines may cause autism. Not so, claimed the CDC. “Let me be very clear that the government has made absolutely no statement indicating that vaccines are a cause of autism,” said Julie Gerberding, MD, MPH, CDC director. “That is a complete mischaracterization of the findings of the (Hannah Poling) case and a complete mischaracterization of any of the science that we have at our disposal today.”

    In the Hannah Poling case, Hannah Poling had an underlying serious health condition and so isn’t typical of most children, so even if it turned out that the vaccine mixed with her health condition caused autism it would be very rare as this is the only example out of many millions of people vaccinated that we have and if it was felt that this was a possibility then other similar people would be likely recommended not to have that vaccine to prevent them from potentially having a similar problem, this is one reason why you want herd immunity, so that the child perhaps with similar health problems to Hannah Poling where that child’s Doctor recommends that they don’t get vaccinated (which would be unlikely due to the poor evidence, but we are talking here about ‘what-if’s’) then the parents can be comfortable in the knowledge that most other people are vaccinated so that their child is at a low chance of contracting Measles, Mumps or Rubella. It is difficult for scientists to work out whether there is a causal link from a single case like this, or possibly even to 100% conclude there wasn’t a causal link. All they may be able to conclude is that if there is a causal link it is incredibly rare and only likely to have a chance of occurring in a very rare and unlikely set of circumstances. So a payout in a court doesn’t mean that the science concluded that the vaccine caused autism, just that a plausible way that it could be possible was presented and the court felt it was a plausible enough way. It doesn’t have to be ‘beyond a shadow of a doubt’ just ‘better than 50% chance that it could be what you are saying’. Likewise, many cases are settled without conclusion and these aren’t settled meaning scientist now conclude vaccines cause autism, just that it was decided and agreed to settle and bring the case to a close rather than dragging it out and having all the costs involved. Currently the science seems to point to autistic people being born autistic with signs of autism being visibly evident usually within the first year or two of life and specialists can notice signs earlier than this from a child’s behaviour. There are also tests which can be done in about 3-9 months which are under research which seem to have a high success rate of showing whether someone is autistic based on their brainwaves. It may in the future turn out that one or more environmental things post-birth cause autism in some people within the first few months of life (it obviously has to be something which leads to impacting on brain development that takes place in the first few months of life), but currently it seems autism is hereditary in about 80% of autistic people, the other 20% or so involves things like premature birth, older parents, and various other prenatal environmental factors and mutations in the mothers egg or fathers sperm. There may well be environmental factors which impact on the severity of autism symptoms and how the autistic person develops, with the most recently publicised studies probably being the ones about the impact gut bacteria has on autism and how changing gut bacteria can have a significant impact on autism symptoms and the IBS which many autistic people experience, but there is no evidence of vaccines causing autism, or of anything else causing autism after the birth experience. There is some evidence that things like lack of breathing or other brain-trauma incidents occurring at birth can potentially lead to autism, that if the mother has Rubella during pregnancy, the child has a 7% chance of being born autistic (even more reason to have been vaccinated!) and a very low possible increase in having an autistic child if the mother has flu or is on antibiotics during pregnancy.

  • HOW TO GET AN AUTISM DIAGNOSIS IN THE UK

    October 24th, 2022

    (AS AN ADULT OR FOR A CHILD/TEEN)

    This is about how to get an autism diagnosis in the UK (as an adult or for your child/teen) and is written based on information taken from my autism books. Often people seek autism diagnosis wrong, which leads to them or their children not even being seen for an autism assessment and so not being diagnosed. 

    Before seeking autism diagnosis for yourself or your child or teen it is useful to have an idea of whether you or they are likely to be autistic. One of the quickest ways to do that is to take the Autism Spectrum Quotient Test. There is a Childhood Autism Spectrum Test and an Adult Autism Spectrum Quotient Test, one is for testing yourself, the other for completing in relation to a child. The results of the test will give a strong indicator whether you or they are likely to be autistic or not. To be diagnosed autistic there are certain traits that they will have. How these traits express from person to person will be unique to the person. Sometimes at first glance, or first thinking about it you may not recognise yourself or your child as having one or more of the traits because in others, they maybe masking or covering up that they have that difficulty, and they or you may behave in a way which makes you think the difficulty isn’t there.

    An example of this could be that you are outgoing and confident and the ‘life and soul’ of social situations, so you feel that you don’t have difficulty with social communication or social interactions. Yet when you explore further you may discover that you are the same around anyone meaning that at times perhaps your attitude is socially inappropriate and you don’t notice perhaps when people are uncomfortable with your behaviour, or with your jokes, that your behaviour is very one-sided, you do all the talking about what you want to talk about, you don’t really do any listening or engaging with others and you don’t seek out comfort or closeness to others.

    To be diagnosed autistic the traits have to have been there the person’s whole life, as autism is a developmental disorder, so it is something you are born with. Usually you need to also be able to evidence or state why a diagnosis is important. It can’t usually be ‘just to find out if I (or they) am autistic’. It has to be demonstrated that in some way these traits limit or impair everyday functioning, so the person will be struggling in some way.

    The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) published in 2013 notes that autism spectrum disorder is characterised by (reference used for the below here):

    A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history:

    • Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
    • Deficits in nonverbal communicative behaviours used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
    • Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behaviour to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

    B. Restricted, repetitive patterns of behaviour, interests, or activities, as manifested by at least two of the following, currently or by history:

    • Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
    • Insistence on sameness, inflexible adherence to routines, or ritualised patterns or verbal nonverbal behaviour (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).
    • Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).
    • Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

    C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

    D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

    E. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make co-morbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.

    Along with these areas the autistic person could have above, below, or average intelligence. They could have other additional conditions like epilepsy, obsessive compulsive disorder (OCD), anxiety, depression, attention deficit hyperactivity disorder (ADHD). Some people may be more internally focused and perhaps quieter, others may be louder and more externally focused. This can lead to some being overlooked because they don’t appear to display any ‘problems’ as they are just quiet. Some may appear very childish for their age in the way they behave, others may appear very grown-up. 

    When seeking a diagnosis for yourself, you child or teen, there are some important things to remember. It isn’t just a case of going to the GP and asking them to make a referral to have an assessment. You will need to say what behaviours you or your child does and what traits they have that make you think you or they may be autistic. You will have to say why it is you want the diagnosis. It is common in most places that they don’t diagnose just because someone is autistic; rather, they only diagnose if the person is being affected by being autistic, and where a diagnosis would be helpful. So if the person’s needs can be met, and behaviour can be managed without the need for a diagnosis, then this is usually preferable to labelling someone.

    There are many people on the autistic spectrum without diagnosis who cope fine, and who don’t need a diagnosis to get additional support. You will also have to demonstrate how the person’s behaviour and traits happen in all areas of their life – home, community, and work/school (which can obviously be that the person isn’t in work/school), and describe how the behaviour and traits have been observable pretty much since birth. You want actual examples given, so, describing incidents to back up what you are saying. It is useful to get these things written down and in case you give a copy to the GP or autism assessor, it can be handy to make a copy.

    All of this information needs to be on the letter the GP sends to the child and adolescent mental health services (CAMHS), child development centre (CDC) or adult autism assessment team, or whichever organisation diagnoses in your area. In many areas, if they receive a letter from a GP just saying “this parent would like to have their child assessed for autism spectrum disorder”, without supporting information, they will reject the letter (the same if the letter is saying “this person would like an autism spectrum disorder assessment” for themselves). Likewise, if there is only evidence of difficulties in one area of life, like the family home in children, and school is fine, or vice versa, then they are likely to reject the referral. If the behaviours or traits aren’t displayed in certain situations and you think you know why this is, then this will need to be put down as well. It could be that they attend a school where they are in a very small class, and the school has put in great support – the staff are very good at understanding children on the autistic spectrum, and they have great boundaries, structure, flexibility to deal with issues when they arise, etc. Or with an adult it could be that you never go out, so don’t have issues outside the home, or maybe you do a job that is structured to suit you so that traits or behaviours don’t negatively manifest in that situation.

    The assessment will usually consist of some detailed questionnaires to fill out, these will often be some multiple choice (like the ones at the beginning of this post) as well as some freeform questionnaires to explain in more detail about yours or your child’s experiences. Sometimes it can be helpful to have support filling these out. If you need support and you don’t know anyone who can give that support, you can ask when you receive the paperwork and they will recommend how to get the support you require. Sometimes the assessment team may have a phone consultation with the parent or person, which may conclude as either positive (a diagnosis on the autistic spectrum), or negative (a conclusion, from the information given, that it doesn’t sound like you (or your child) are autistic). I don’t know of assessments happening too often over the phone, but in some areas this means people can get assessed much quicker than the usual 8-12 months wait for adults and 1-4 years wait for children. Alternatively, they may arrange a face-to-face consultation with yourself (or the parent and child). Sometimes following a phone consultation they may be undecided or decide for some other reason to follow this up with a face to face assessment, they may also ask parents if they mind them talking with other professionals like the school, and they may ask for an educational psychologist to see the child in school.

    For adults seeking diagnosis it is common for the assessor to want to speak with your parent(s) or someone like a Doctor who has known you your whole life so that they can identify from that person what you were like as a young child, what you were like in school etc. If this person can come to the assessment then that is often preferable, but they will sometimes talk with the person over the telephone. If you don’t have a parent or someone they can talk to then they will want to look at how else it can be evidenced what you were like in early childhood. It could be something someone had written, or school reports, or previous medical information, etc. At worst, if none of this can be found then they may do more questioning of you about your childhood and take longer over the assessment. What they are trying to do is to make sure you aren’t how you are currently presenting because of a different reason, and that you have always been the way you are. 

    Seeking a diagnosis can be a long process, sometimes parents can feel they are being treated as though they are a bad parent. What is often suggested is to have parenting support, even before diagnosis – not because you are a bad parent, but because there are things they may not know or do currently which could improve home-life, and these things work with most children, both on and off the autistic spectrum, but particularly when done consistently with a child on the autistic spectrum. When I used to work as a parenting support officer, the first thing CAMHS would often do was to give the parents my details and tell them to use the parenting service. Parents contacting me were often frustrated saying they didn’t want parenting support, they wanted their child helped; they didn’t know that the parenting concepts used were the same whether the child was autistic, or ADHD, etc, or challenging behaviour, or no issues at all. In reality, the only thing that is different is tailoring the way the parent applies these concepts to their own child, and being prepared to put in hard work. 

    For parents where there has also been (or suspected to have been) additional factors, like domestic abuse at home, or evidence of prior parenting issues (for example where the parent was depressed, or had perhaps had an alcohol or drug problem, or where trauma may have happened to the child, like the death of a close grandparent), then the parent may be asked to seek parenting support first to ensure the parenting approach is at a high standard. Then, if the child has other issues, they may recommend the child talks to someone about this, or addresses it in some way. After doing all this, they then come back about the diagnosis, because it may not have been autism, it could have been due to these other issues instead, where a child has – for one reason or another – not been supported consistently. They will want to rule this out first. I know parents often feel frustrated when they are told to get parenting support before coming back to see if a diagnosis is required, but the reality is the parent will now have the skills to manage their child, regardless of whether they end up being diagnosed autistic or not.

    The reason for doing this is that children who have grown-up with domestic abuse in the household, or who have experienced neglect or abuse themselves, or trauma, or a period perhaps of having an uninvolved parent because the parent was maybe depressed at some point while the child was developing through early years can display similar to autistic children. Obviously, some children who have these experiences are also autistic, but others may appear autistic who aren’t autistic.

    The same applies for adults seeking diagnosis, that the assessor will want to rule out these kinds of experiences as being behind the behaviours appearing autistic, they will want to see that the person has displayed autistic traits their whole life and not just from various life events.

    When you attend the assessment the assessor usually has your filled in paperwork, they go through this with you (about yourself or your child) asking about your answers and asking you to expand on some areas. It can be helpful to have some notes yourself if needed just of things you feel are important to say, because when you are in the assessment it is easy to forget to say things and only think of them after the assessment is over. In most cases you will likely just have the one assessment where at the end of that assessment the assessor will say whether they think you (or your child) are autistic. They will then write up a report. It can take weeks for them to do this, but you usually have been told whether they felt you (or your child) were autistic or not, so you will know what the outcome of the report will be. The report will just go into more detail about what led them to their conclusion, a bit about what was discussed and perhaps some ideas or recommended advice for the future, like requiring support with getting into work, or occupational health support, or support with ensuring you are claiming the correct benefits, or educational support, etc.

    I made the mistake of filling in all of my assessment forms and sending them to the autism assessment team without making copies of the forms and my answers. It wasn’t until after the assessment and being told I was autistic that I felt the forms had helped me to put into words explanations about myself and my struggles better than I can normally vocalise, so I wished I had copied them before sending them off to the assessment team. I emailed the assessor and asked if she could send me copies of my forms. She was happy to do this, she photocopied my completed forms and sent them to me. I would recommend copying these yourself in case you decide you want copies and don’t want to run the risk of struggling to get hold of them if you haven’t copied them yourself. 

    Following the diagnosis there is no obligation to have to tell others, but it is helpful, in my opinion, to have the diagnosis. I have found it has helped others to understand me. I was always open and honest about myself, but it was common for some people to say I was just making excuses for being rude or to get my own way etc. Or I would get told there are no excuses, you have to behave how you are supposed to behave, or that certain behaviours of mine are just unacceptable. With the diagnosis I have found that people generally are more understanding. I still get offensive comments and abuse and some people saying “autistic people are just really trying to have an excuse to be arrogant and selfish” etc. But most commonly I get curiosity and a desire to understand from people. The diagnosis means I can access support and address discrimination.

    For parents, you don’t necessarily have to tell schools the child is autistic, but it is helpful to have the diagnosis if the child needs additional support, especially around things where others just see their behaviours as ‘bad behaviour’ when in fact the behaviours are due to the child being autistic.

    In my view (and not really told at any point during the diagnosis process) having the diagnosis is the start of the journey. I have spent years teaching parenting courses. It has been common on courses for parents to have had their child diagnosed and then they were sent away with no further support, discussion about what it means or guidance. Those parents often sought diagnosis because they saw ‘something wrong’ with their child, maybe they struggled with aggression or some other behavioural challenge, or anxiety etc., and once the child was diagnosed and they were told “your child is autistic, they were born that way and will be autistic for life” they hear “your child will have these problems for life”. They don’t have anything explained to them about what it means to be autistic, about the challenges, but also about the strengths and how the autistic person can be helped to channel their way of being in the world towards wellbeing and personal growth, and how they can help their child with their challenges.

    Many of the parents I’ve worked with have said that they expect their child may never leave home, may never get a job, may never get in relationships, etc. Something I saw as my role was to help these parents see the strengths that were within their children, help them to develop optimism for their child’s future and help them to know how they can help their child on that journey towards the future. I would use myself as an example, someone who is autistic, who struggles with socialising, struggles to understand others, struggles with changes to routine, etc., and yet holds talks, teaches courses, works as a psychological therapist and more. 

    I explain how by not having the same emotional connection to others as other people do I am able to listen to clients talk about traumatic experiences and not be upset by what I am hearing, I am able to go home from work and not ‘take home’ the client’s problem. I don’t sit at home worrying about clients. By not getting drawn into the client’s emotional story I am able to notice the pattern to the problem, I am able to notice small and subtle details that are important to helping that client move on from their problem. These are areas other therapists struggle with. It is common for counsellors and other psychological therapists to respond emotionally to client’s stories, to be drawn into the story and so miss the patterns behind the story, to go home worrying about clients. Talking about these things was able to help parents see their children’s futures in a different, more strengths-based way.

    I always think it is a shame more time isn’t given to people following the diagnosis to help people see autism, not as something consisting just of deficits or challenges, but also of strengths, and also helping people to know what can be done to help autistic people address challenges they face, whether this is helping the person to develop skills and knowledge, or making changes to the environment, to expectations and other areas.

    So, for me, the diagnosis is the beginning of the journey, following the diagnosis is the process of learning about challenges, what can be done to address these, and strengths and how they can be developed and utilised.

  • Autism Gives Me Superpowers

    June 10th, 2019

    This post about neurodiversity may seem a bit long, but hopefully you will bare with me for a bit. The reason is that I am talking about something here which I know some people react negatively to before gaining a deeper perspective about what I mean when I say ‘autism gives me superpowers’. There are some who are really struggling with being autistic – it can be a real struggle, there are also some parents of autistic people who see the challenges and struggles every day, who don’t see anything about autism as a superpower or strength, so I want to share a bit from my professional career, before moving on to sharing about myself personally and transitioning to describing some of what I like to think of as my superpowers from being autistic.

    No Hope For The Future

    Some years ago when I was working directly with families I was teaching a family support course. On that course were a number of parents who had autistic children. The first session of the course involves everyone getting comfortable with each other. We all introduce who we are and the parents say what they would like to get from attending the course.

    Although the focus of the course is on what people want, rather than on what they don’t want, at this early stage in the course it is inevitable that people share the challenges they are facing. One parent mentioned that they just want their son to have a future, she started to cry as she explained that her son was diagnosed autistic, that she was told it is a lifelong condition. She said her son couldn’t cope on his own, he struggles around other people, often plays up in school and then gets fixed-term exclusions for this, or gets sent to a ‘naughty room’ in the school, which makes him angry and then due to his anger he gets in more trouble. She explained that he doesn’t seem to have any feelings, doesn’t seem to understand that he is emotionally hurting others. He gets obsessed with his interests. She said she believes he can be really compassionate, he is really good with animals and always wants to help, but then he will hurt people’s feelings, be violent and aggressive towards people and not do as he is supposed to do.

    This was the first twenty minutes of this group of parents, myself and another course facilitator meeting each other. I had met a couple of the parents before, the other facilitator had met some of the parents before and there were facilitators supporting the children of these parents in a separate room, those facilitators had each met some of the families as well. Yet, despite no-one really knowing anyone else, the parents quickly opened up and bonded over experiences they could relate to. Many parents agreed they had similar stories to tell as this parent.

    This parent’s main concern was that her son was probably going to have to live at home for the rest of her life, she didn’t know how she was going to cope with this and what would happen to him when she is too old to support him. She said he would never be likely to get or hold down a job, he would be unlikely to successfully finish education, he is unlikely to love anyone and have a healthy loving relationship. She had already written off his future and her own future.

    She was an incredibly loving parent, but she had taken her son to the GP because she was struggling with his behaviour and the school were struggling with his behaviour, so she wanted to know what was wrong with him. Eventually, he was diagnosed autistic, but, other than being given the diagnosis, there was no support offered. The parent’s interpretation of being told her son is autistic and it is a lifelong condition, was to hear that her son will be the way he is and have the problems he has for life. She wasn’t offered support, wasn’t offered education about autism, wasn’t offered anything helpful.

    After the parent relayed their struggles and challenges they have faced and told me about some of the positives of her son, like how caring he could be and seemed to want to be (I often follow up parents telling me about negatives of their child, with asking something like ‘it sounds like it is a real challenge and has been really difficult to cope with. Just so that I don’t think he is all bad, what are some of the things you love about him?’ Parents usually agree that their child isn’t all bad and proceed to tell me positives), I stated that it sounds like he could make an incredible counsellor one day. The mother was taken aback and said that he can’t socialise etc, and so wouldn’t be able to do that.

    I shared what she had stated and how many of these can be strengths in counselling. He wants to help people, he is compassionate, he is great at getting absorbed in interests and learning everything there is to know about those interests, he doesn’t get emotional when he hears things that others would find upsetting, he is great at noticing patterns, he is able to move on quickly from things (can be angry one minute and then as if nothing has happened the next minute).

    I went through how these traits are great for those interested in being a counsellor and how, if he decided to take a route like that, he can have his strengths nurtured and he can learn ways of managing challenges he faces. It doesn’t mean he won’t face challenges and that some of these won’t be really difficult to overcome or really overwhelming, but how he is as a teenager isn’t how he has to stay as he grows up.

    That specific course I was teaching was an eight-week course, he son exceeded all of her expectations in the young people’s group (which took place in the same building and at the same time as parents were with me). She didn’t think he would get on in the group, didn’t think he was make friends, didn’t think he was behave and not get angry and didn’t think he would learn or understand anything being taught to him, or that he would change his behaviour. He dramatically changed his behaviour, learned well and especially loved being taught meditation and a breathing technique for calming himself down and focusing his attention. He became more independent and engaged well in school, his anger significantly reduced. At follow-ups over the next year he continued to progress and do well in school, this allowed the mother to go back to work and meet up with friends etc, and get her own needs met. The mother reported that for the first time in years she believed her son had a future independent of her and that he could achieve things and carve out a path for himself.

    Relating to Superman

    Growing up, I didn’t really have many people in my life who I felt I could relate to so I turned to fictional characters. Over the years there have been a few characters I have related to. The earliest character is probably Clark Kent/Superman. When I was a child I remember watching the Superman movies and over the years have watched the early versions of Superman, cartoons of Superman, Smallville, Louis and Clark, etc.

    As a child, Clark Kent had to deal with his superpowers developing. Suddenly he perceived the world as too bright and all the visual information as overwhelming and his hearing was hypersensitive, everything was too loud, it was all confusing and a jumble of sound and hearing a wide range of sound. He was an alien, he was different to everyone else, he knew he was different to everyone else but tried to fit in and be like everyone else. He tried to hide his superpowers and be as normal as possible.

    Clark had to learn how to manage his superpowers, he had to learn to manage all the visual and auditory information and learn to focus on just one thing at a time. He knew he was stronger than everyone else, he knew he could cause harm and so had to learn to keep himself calm and manage his emotions. All of this I could relate to. In Superman having highly sensitive hearing and vision and super-strength are all seen as superpowers. They could just as easily have been seen by Martha and Jonathan Kent (Superman’s adoptive parents here on Earth) as being problems in Clark as he was growing up, as Clark struggling with sensory overload and getting anxious or angry because of this and not knowing what to do to help him and his struggles with keeping himself calm, or managing his focus of attention, of understanding the behaviours of others and fitting in, especially when trying to fit in would mean putting himself in situations of increased sensory overload and having to manage this as well as learning how to fit in and act normal.

    I see many of my autistic traits as being like superpowers. I know that having these traits can lead to me experiencing challenges, I get angry and anxious in social situations, in loud situations, in situations where there is a lot of movement or light or colour or chaotic patterns or shapes, etc. I upset people I love by being too blunt with them at times. I make things difficult for myself at times, or miss opportunities because of my black-and-white thinking. I struggle to make and maintain friendships. I can be single-minded and focus obsessively on my own interests. I can put myself first above others and appear selfish at times. I can appear unappreciative when given food or gifts etc. I can shut down and not function, etc… But, the traits which lead to all of these and more, are also strengths which can be nurtured and promoted and worked with.

    Neurodiversity is about recognising and respecting that we are all neurologically wired differently. There isn’t a wrong wiring, just different wiring and this different wiring leads to different ways of thinking about things and different ways of behaving, and these ways of thinking and behaving aren’t wrong or broken. The idea is to look at how to respect differences and help people to thrive and promoting self-expression.

    All of my professional work has always been to look at strengths and find solutions. This doesn’t mean I ignore struggles people have and how challenging things can be, just that I feel, as far as possible we should all work with neurodiversity, rather than against it. If someone struggles with loud noises, then you support them by trying to find ways of quietening things down. If someone has a natural gift for doing maths in their own way, you support and promote this, rather than telling them they are doing it wrong (or any other skill or way of thinking about the world someone may hold like this). For example, I’ve been told repeatedly while working within the care sector as a one-to-one therapist and as a family worker that I think about things wrong, that my not caring about the families (as people would put it) means I am in the wrong job and shouldn’t be doing this work, yet I always had some of the best results of all staff and liked doing my job. What should have happened is that my different way of thinking about things should have been respected and nurtured. I shouldn’t be told I am in the wrong job (even though I like the job and am good at it) because I think differently to everyone else.

    Here I will talk about my personal superpowers. Every autistic person is different, so we will all have our own set of unique superpowers. Some traits are obviously shared by all autistic people, this is the case or else we wouldn’t be diagnosed as autistic. How traits display in every individual will be unique to the individual.

    My Autistic Superpowers

    There are some autistic superpowers which I seemed to have at younger ages, that I seem to have lost over the years. Some of these I’ve heard from others, especially where formal education is involved. I’ll mention some of these first.

    As a young child I used to be able to look at collections of things and be reasonably accurate stating how many items there were in that collection. Some examples include attending a summer fair where there was a ‘guess how many coins are in the jar’ competition, my guess was correct. When I was in primary school I painted a mural with other children of dozens of animals, at the end of painting the mural we were told that there would be a prize for the child who can get the closest guess. I got the closest guess, I was one out.

    When I was in my teens I used to be able to induce synaesthesia in myself. When playing manhunt in the woods at nighttime for example I would see sounds as coloured light so that I could see where other children were because any snapping twigs or movement would create a coloured flash of light, giving away their position.

    Some traits I have had throughout my life or developed because of being autistic include:

    Pattern Recognition – Something I think of as a superpower is my ability to recognise  or notice patterns other seem to miss. This has been very helpful as a therapist and within my care work. I have noticed patterns in people’s problems which has allowed me to be able to find simple solutions that others haven’t thought about. I don’t get drawn into the content of problems people talk about, instead I observe for the structure of the problem. This allows me to help people by working purely metaphorically using storytelling if I want to, it also allows me to find solutions which don’t at first glance seem like a logical solution, and it allows me to work without knowing all the content. I can just observe and respond to patterns I see playing out.

    Some examples of this include having someone aggressively coming to attack me in an enclosed space (in a building). I instinctively picked up a cricket bat which was next to me and gave them the bat telling them to use that instead. This to me was the logical way to deal with the situation. It made them more predictable and it interrupted their pattern of behaviour. Another example is working with a girl who was skipping a lot of school, when she was in school she was often getting herself excluded, she was hanging around with men in their twenties (she was a young teenager) and was doing inappropriate behaviours with them. The solution was to get her back into playing football, which turned her behaviour around.

    Heightened Awareness – I have a heightened sense of awareness. I can notice things in situations which others miss, my wife often jokes about it, about how I can see an insect to photograph long before we are anywhere near it. Once I realised that people have non-verbal behaviour I learned what different non-verbal behaviours people have and can notice this really well, and because I have learned to do this as I have grown up, rather than as a very young child where it becomes instinctive with little conscious awareness of what you are noticing, I can explain what I am noticing and because I am aware of what I am noticing it means I can look for patterns in what I am noticing and then test these patterns (like noticing someone in therapy responds a certain way I think seems like anxiety when they are talking about something, and so I can change the topic, see if they change their behaviour and then change back to that topic again and see if they repeat the same pattern).

    I can have heightened awareness when searching for things, so if I am searching for something specific in a book I can tell myself what I am looking for and often quickly find it just from rapidly going through the book and when my brain sees what I am looking for it seems to jump out of the page at me. I can notice different sounds, movement and visual information and also seem to have a heightened sense of physical awareness, for example, I can touch hands with someone, ask them to say three things to themselves in their mind and make one of those things a lie and I can tell them, just from touching their hand, which one of the things is a lie. I actually find it easier to communicate like this, through touch and physical behaviours, rather than verbally.

    Threat Perception – I have, and find many other autistic people have, a pronounced threat perception, we can be very anxious. Anxiety is out threat perception survival response. The better this response the more likely you are to survive. What often needs to be developed is the problem-solving part of the process. We can be very good at identifying threats, but need to learn how to follow this up with solutions. This threat perception is perhaps over-sensitive and at times sees threats where there are none, but when something about a pattern is wrong, or when something about the incoming information doesn’t feel right I can notice this as a threat. I know autistic people can be naive and can be taken advantage of in some situations by not noticing certain threats and can be at increased risk of grooming, abuse and domestic abuse, but in other settings the heightened awareness, pattern matching and all-or-nothing black-and-white thinking can identify threats and keep you safe. For example, in my work as a therapist I may be walking up to a clients’ house and something my feel wrong. Other staff may not notice this (and from managing and training staff, I know this is often the case) and may approach the house and enter. I would feel like something is wrong. I wouldn’t immediately know what, but then would suddenly get a flash of what I have noticed. It could be that the curtains are shut, where normally they are open, it could be the way a car was parked on arrival, or that lights are off when normally they would be on, or something about a message sent from the client beforehand and now seeing the house, etc. Because of my black-and-white thinking, at this moment I will make an excuse and leave, I won’t go into the house. Over the years I’ve found out on numerous occasions that this has saved my life (or at least prevented significant injury).

    Master of Disguise – Autistic people are often master’s of disguise, they learn how to blend in and appear normal. I found as a child that although I was different in the way I was compared to other children, because i was quiet I blended into the background almost as if I wasn’t there. This is also the case as an adult. I can be at events and I feel like I am invisible, like no-one notices me. I can leave events and no-one realises I’ve gone, and while I am at events I can sometimes play a role so that people don’t notice anything different about me. It is common for people to find out I am autistic and say they never would have suspected. They haven’t noticed I never started a single conversation, or that all the conversations ended up about me and my interests, or that I never asked about them etc., and I am not in the situation so long (usually) that the mask slips, revealing myself and struggles and sensory overload etc. I have learned to hold it together for periods of time. I see this as a superpower, because most people are false around others, but people generally seem to notice, whereas I know many autistic people who no-one notices are autistic until they reveal it.

    Hyper-Sensitivity – Tying in with the heightened awareness,  hyper-sensitivity allows me to notice difference. This can be helpful in identifying flaws in things. I can run my fingers over something and notice imperfections in things others can’t notice, I can notice which strip light in a office is flickering most and likely to be where a fault is, or notice subtleties in temperature or tension or something which could indicate where something is becoming faulty, etc. I have low-sensitivity as well in some areas, like taste, I generally need a lot of flavour to really feel like I am tasting something and need pure flavours, not mixed flavours. I’m sure this probably has benefits in some contexts as well. My hyper-sensitivity to movement in my peripheral vision allows me to quickly identify and find things, this is really handy for photography and in therapy.

    Laser Focus – It can be easy to get distracted and overwhelmed, but at the same time, I can develop a laser focus on a task or topic almost to the point of obsession. This means I can become an expert in a topic by obsessing about it and learning everything there is to know about it. It also means I can get absorbed in a task and not get tired etc, but remain focused until I have completed the task (for example, writing, I have written 27,000 words in a day – back in the days when I used to type very slowly – and to me, it didn’t seem like much time had passed, yet I wrote from about 5am through to about 3am without a break (other than a couple of trips to the toilet and pouring a few glasses of water). It is very common for me to experience time-distortion, where I do something and think a few minutes has passed, and yet many hours have passed.

    Compartmentalisation – My brain seems to largely naturally compartmentalise. For example, I can be working with a client who is telling me the most horrific things, or who is suicidal and who may well carry this out, but once the client session (and any involved work) is over I am not thinking about them and so I don’t think about them. I can go home at the end of the day and eat dinner and won’t give my work a second’s thought. Most therapists struggle with this, it is common for therapists to take their work home with them. When I was helping my dying Dad I was able to be with him and as soon as I wasn’t with him, he wasn’t in my mind and so him dying had no impact on my everyday life. This can come across as uncaring at times, but it isn’t, it is just the way my brain works. When my Dad and Granddad died (both over the last few years) I would be sad when thinking about them, but seconds later, I’m fine. For example, when I received the telephone call that Granddad died I was said. Seconds later when I had hung up the phone and was getting on with my day I felt nothing, not because I didn’t care, but because I wasn’t thinking about the thing (my Granddad) which makes me sad.

    Honest and Direct (Authoritative) – This may be an odd one to think of as a superpower, but it is surprising how uncommon being honest and direct is, yet it is so helpful. In emergencies for example, you want someone who is direct and authoritative, someone who just says what everyone needs to do. In relationships, people lie to protect each other, but my doing so there are times when people get hurt further down the line instead, like if I told my wife that a dress which looked terrible on her, looked good, because I didn’t want to hurt her feelings, and then she wears that dress out and someone else tells her that it looks terrible, or she sees herself when out and suddenly without ‘buying goggles’ on she thinks about how terrible she looks in it and why didn’t I tell her. It is better to have this realisation and discussion sooner.

    If I am managing a team, it is better to be able to be direct and honest with staff, than be one of those managers who never makes things clear and never addresses issues because they are don’t want to deal with the fallout from it. There are many situations where being honest and direct as a natural part of being me has been a superpower. Obviously, like with all of these superpowers, there are challenges caused by it, but it is about channeling it and nurturing it and educating how to handle situations where it is best not to be direct and honest.

    Loyalty – It is common to hear about the loyalty of autistic people. This is something which can make us great in relationships. We may struggle to get into relationships and may need education around how to get and maintain relationships, but once we are in a relationship we are often very loyal. Many autistic people like consistency and familiarity and routines and structure. Relationships with the right person can give all of this.

    Prepared – Because of being autistic I worry about making errors when socialising or in different situations, I want structure, clarity and routines and don’t want uncertainty, so I do a lot of mental rehearsal. I mentally rehearse every possibility that I can think of about how a situation may go. Sometimes I can get paralysed by planning and all the neverending options which seem to be presenting themselves. But, other times it makes things go so well. If there is a fire in a hotel my wife and I are visiting I would have a plan in place for what to do. We often joke that she can handle things I find difficult, that I don’t feel I can plan and be prepared for, like returning an item in a shop or asking for the bill in a restaurant, or socially engaging with people, yet I can handle things she finds difficult, like emergency situations which have a clearly defined plan of action. When I plan for interacting with people, I mentally rehearse what I will do and what different responses the person may give, and then the responses from me to each of their responses etc. Doing this for therapy is much easier as it isn’t a social situation, there are specific paths which people will be taking. It is a controlled environment. It doesn’t mean that things don’t always go to plan, but with experience of doing therapy, and experience of teaching and giving talks etc., I have quite a good idea how things will go. In work situations, especially if someone does a job where emergencies could happen, or being able to plan for situations is likely to be needed, then autistic people can be great in these roles.

    Authentic – I think it is a superpower being authentically me. I may do things to fit in and disguise myself, but I never change who I am. If someone asks me a question I answer it directly. I am the same person with my Nan as I am with my Mum and with friends, work colleagues or employers. I don’t see anyone as holding a one-up position in relation to me, or one-down. I see us all on the same level. I don’t see that I should be a different person with one person over another. I try to remember to say what is expected of me to be what people call polite etc, but I don’t try to be someone I’m not. I know people who find this reassuring and describe me like a solid rock in a fast flowing river, that I am the stability that they want and can always rely on. I often point out that the one similarity that all humans share is that we are all different. I strongly believe in self-expression and authenticity and see these as superpowers, as things that make you, you.

    Animal Whisperer – From a very early age my mum described me as seeming to have a natural ability with horses. I have always been good at relating with animals. I find it much easier to relate to and understand animals, than I do people, because animals don’t generally have such complex, multi-layered behaviours, they rarely do one thing while meaning another, if an animal is angry, it displays anger, if it is scared, it displays fear. I find it much easier to communicate non-verbally with animals and communicate through touch with animals. I find the same with babies and non-verbal people, that I can then communicate through non-verbal behaviours, breathing, gestures, facial expressions and touch, etc.

    This has been a LONG(!) blogpost, but I couldn’t think of how to write it shorter and include the information I wanted to share. I could have written far more traits and skills I think of as superpowers, and I am sure that parents of autistic children can look at traits their children have and how these unique traits to their child can be strengths and superpowers if they are utilised and worked with, and I am sure autistic people themselves can notice and think about their traits and skills and things which might be a problem in one situation and see how it can be perceived from a different perspectives and helpful in other contexts. As the saying goes “nothing is good nor bad, but thinking makes it so”.

  • The Autism Act 2009: Priority Challenges for Action

    April 6th, 2019

    In the 2014 ‘Think Autism’ Autism Strategy document there are 15 priority challenges for action. I thought what would be interesting is to go through all 15 priorities and see what my responses or experiences would be to them.

    An equal part of my local community

    1. I want to be accepted as who I am within my local community. I want people and organisations in my community to have opportunities to raise their awareness and acceptance of autism.

    My experience has been that some businesses do things around autism, like having an autism hour where they have dimmed lights and quiet environment etc, but they don’t keep it up. I generally feel accepted when I say that I am autistic. I have had some experiences of people not accepting me, but this is rare. With organisations I’ve had more problems. I have found them to often be inflexible and not listen. I have had some good experiences. For example, last year I went to a book launch event at Foyles in London. Derren Brown was talking about his street photography book ‘Meet The People With Love’.

    I am not good at travelling to places and across London and on underground trains or attending events on my own. I also find crowds challenging. A friend came with me to support me getting to the venue and back again and also supported me in the venue, including talking to the staff at Foyles about me being autistic and struggling with crowds etc. As you can probably imagine there were a lot of people seeing Derren Brown. I made sure that myself and my friend arrived early, so we ended up sat near the front while Derren spoke, but this meant that when Derren was going to meet and sign books the way everyone was queuing meant that I was near the back of the queue. My friend spoke with Foyles staff about me being autistic. The staff spoke with Derren and Derren agreed to have me skip the queue to meet him and get my book signed and get a photograph with him. This was incredibly kind of Derren and of the staff at Foyles and very kind of the others queuing not having a problem with me skipping the queue.

    2. I want my views and aspirations to be taken into account when decisions are
    made in my local area. I want to know whether my local area is doing as well as others.

    I am aware of the autism strategy and regular meetings which should take place. Despite spending the last few years trying to be involved in raising autism awareness and help progress things in my area I’ve so far been unable to gain any traction. I have no idea whether West Sussex is doing as well as or better than other areas. I rarely hear about things going on, I never seem to find out about many things. I have spoken at a few autism parenting groups, but only recently come across information relating to autistic adults. I would love to be involved in holding talks and workshops locally about autism, but have failed so far over the last 4 years to have any success linking up with any charities, the local authority or other organisations. So I don’t feel my views and aspirations are taken into account when decisions are made and doubt the area is doing as well as other areas.

    3. I want to know how to connect with other people. I want to be able to find local autism peer groups, family groups and low level support.

    I agree, I want to know how to connect with other people. I have recently found out about a possible peer group, but I haven’t checked it out, it doesn’t seem to be local enough to me given that I don’t drive and there seems to only be the one group and I don’t know whether it would be what I would be looking for. For me, it isn’t so much about finding a peer group, but more trying to find a way to link in with what my interests are. I would love a local hypnosis practice group or something around my interests to link in with that I can actually get to and that is frequent and suitable for me to attend, somewhere I feel comfortable attending.

    4. I want the everyday services that I come into contact with to know how to make reasonable adjustments to include me and accept me as I am. I want the staff who work in them to be aware and accepting of autism.

    I do want this, I don’t feel that many places I come in contact with know how to make reasonable adjustments. I want staff in all businesses to receive training around autism awareness and workplaces to have strategies in place for how autistic people can be accepted and supported.

    5. I want to be safe in my community and free from the risk of discrimination, hate crime and abuse.

    I personally haven’t faced much discrimination or abuse within the community. I get abuse frequently on YouTube on my videos because of being autistic and in workplaces I have faced discrimination.

    6. I want to be seen as me and for my gender, sexual orientation and race to be taken into account.

    I generally feel that people see me as me.

    The right support at the right time during my lifetime

    7. I want a timely diagnosis from a trained professional. I want relevant information and support throughout the diagnostic process.

    It took me almost a year to go from seeing the GP to having my assessment where I was told I was autistic and then I just had to wait for the report to be written up and posted to me. I didn’t get support through the process other than receiving the forms in the post and told to complete them before the assessment. I did this and attended the assessment. I didn’t have any other guidance or support.

    8. I want autism to be included in local strategic needs assessments so that person centred local health, care and support services, based on good information about local needs, is available for people with autism.

    I want this. I am unaware whether this is now the case or not. I do think there is more awareness around autism now especially among healthcare and social care professionals who work on the frontline.

    9. I want staff in health and social care services to understand that I have autism and how this affects me.

    I want this. I don’t come into contact too often with health and social care staff, but when I do I want to know I can tell them I am autistic and have them listen and engage in a conversation about how this affects me. I don’t know if it shows on my medical records or anywhere else at the point of a professional taking a look at my details.

    10. I want to know that my family can get help and support when they need it.

    I am unsure whether there is any support for family, like my wife. Generally she is very supportive and goes places with me to support me. The other one is that I often pay double for things to take someone with me to things and I don’t know if there are services which can help here? I know that Chichester Festival Theatre now have a support service where you can meet someone at the Theatre who will support you getting the ticket, getting to the seat, getting snacks etc. So this is helpful and when I go to the Theatre I may look in to using this service as a cheaper option that paying someone to go with me. In the past I have paid for someone to go with me, for example, to Derren Brown’s book launch, to see Ian McKellen and Patrick Stewart in theatre. I had to give a talk at Comic-Con in London and had someone come with me to this, I taught hypnotherapy in Poland and had my wife go with me to support me in attending this, so I always have to pay for a second ticket and cover someone else’s travel for many things I attend and I have turned down attending things where I have been unable to figure out someone to go with me, like turning down teaching hypnotherapy in Las Vegas and talking about autism at a Neurology conference in Germany.

    I am aware of carers support, but I don’t think my wife would think of herself as a carer, but there are times my behaviour can likely be frustrating and she might find it helpful to have someone to talk to, or have others to interact with to get an idea of the experiences of others in similar situations. Abbie often says she forgets I’m autistic, because to her I am just Dan.

    11. I want services and commissioners to understand how my autism affects me differently through my life. I want to be supported through big life changes such as transition from school, getting older or when a person close to me dies.

    In my book ‘An Autistic Perspective: Death, Dying and Loss’ I cover life transitions because these involve loss. I explain about transitioning from one school to another, or from home to independent living, or from school to work, or when people die etc., and explain about how this impacts on autistic individuals. This is something I think, especially here in the UK where there is focus on local authority services only meeting their statutory requirements and not delivering services which could prevent problems or support people at an earlier stage. The focus is on charities and other organisations having to find a way to offer this support.

    I definitely don’t believe that any service would pick up if something happened between my wife and I and I became homeless. I doubt anyone would notice. I now think that because I have a diagnosis, if I walked out of a job because of changes they were making, or lost a job, I would likely be able to say I am autistic and I like to think that I would be able to access support to help me find work quicker. I think something beyond the scope of this, but it is important is that employers and educational establishments etc need to be aware of how autism affects people throughout their life. The way I chose to write my autobiography ‘Look Into My Eyes’ was to address this. I wrote it so that the reader can have an idea of how being autistic impacts on the autistic person at different life stages and in different situations and the behaviours autistic people may display and why, to try to help non-autistic people understand what they observe and what they can do to help the autistic person.

    I know that my default setting when things happen is to shut down and shut myself away. It isn’t to seek help and support, or to tell people what I am experiencing. I worry that many autistic people are similar to this and this makes them slip through the cracks. If I became single I wouldn’t choose to interact with people, I wouldn’t go out of my way to tell people. When I walked out of my holiday camp job years ago I was single, I didn’t tell anyone I quit, I didn’t go and try to claim benefits, I didn’t try to find a way to eat or to find money to pay rent, I didn’t try to find another job. If it wasn’t for my manager at the time deciding to come to my flat day after day until I responded to him I would have stayed in the flat, then got kicked out of the flat, then moved into the woods. I wouldn’t have contacted family or friends or sought any help. There must be other young autistic people who would be similar, and the people I am more concerned about are those who are undiagnosed, because they won’t be able to access relevant support. When I was unemployed after being ran over I didn’t have a diagnosis and I couldn’t officially access the support available for those with disabilities etc.

    I don’t feel that autistic people and their families are aware enough or have access to those making decisions. I would like to see public meetings where autistic people and their families are invited to talk about what autism services are available in the area and to have a say on what is needed and what improvements are needed. Not just perhaps a single autistic representative attending a meeting, or worse, meetings of professionals taking place to make decisions without consulting autistic people and their families.

    12. I want people to recognise my autism and adapt the support they give me if I have additional needs such as a mental health problem, a learning disability or if I sometimes communicate through behaviours which others may find challenging.

    This was the main reason for ending up depressed and suicidal in my last job, that I was being very open about myself, but unfortunately didn’t have an official autism diagnosis at the time, so was ignored and didn’t have my additional needs or way of processing the world recognised and wasn’t supported. I struggled with sensory overload, with changes to my routine, with lack of clarity in how I was communicated with, with anxiety and depression. This was well after The Autism Act 2009 came about, so to me I don’t feel this has been met well.

    Since being diagnosed people I have interacted with have accepted me more, but I still get a lot of times where even when I say that I am autistic, people will say things like ‘that is just something people say as an excuse for unacceptable behaviour’ or that they don’t believe me, because I don’t ‘look autistic’, or when I say about struggles I have or am having they say ‘but everyone feels that’ and they dismiss my lived experience. I don’t know if things would be better in work if I worked now, but I like to think they would be because I would be able to get occupational health support in to help me and my employers would have a legal obligation to make necessary reasonable adjustments.

    13. If I break the law, I want the criminal justice system to think about autism and to know how to work well with other services.

    Fortunately I have never broken the law. I have interacted professionally with the criminal justice system and I have interacted with the police a number of times, sometimes positively, other times not so positively. Many of my recent interactions with the police have been positive, but back when I used to work in children’s homes I had a night where I called the police due to us staff being at risk of serious harm. When the police arrived I answered the door and the police officer grabbed me by the neck and forced me into a room pinning me to a wall and about to be violent towards me when I took the keys out of my pocket and said ‘do you want me to show you up to the office?’ and he then let go of me and came to the office with me. I thought to myself that I was glad it was me who answered the door and not one of the teenagers who he obviously thought I was one of because I wouldn’t have wanted him to treat them like that and they would have retaliated and probably given him an excuse and justification for further violence. I’ve supported autistic people in their interactions with the police as appropriate adult just making sure everything is taking place fairly and at least with me there as a professional things seem to have gone fine.

    Prior to The Autism Act when I was working in children’s homes there was an autistic young teen who received a phone call from his mother, calls weren’t monitored, we tried to allow the call to be as private as possible for those who received calls, his mother never told us what she was going to tell him, she then told him his grandmother had died and then she hung up on him. He got angry and smashed a door then ran away to try to get to his grandmother’s. We dealt with the incident and obviously had to report it to the social worker and call the police to help find the teen. The social worker and police pushed for him to be put in a secure unit for his behaviour despite myself and all other staff saying we could understand this one outburst and he shouldn’t be put in a secure unit. We were ignored and he was put with young offenders in a secure unit where he was very vulnerable. We tried to fight to get him out of their, but were ignored and over the weeks we were still involved visiting him and fighting to get him back into the non-secure children’s home rather than where he was which looked like a prison we could see he was increasingly being bullied and deteriorating.

    Developing my skills and independence and working to the best of my ability

    14. I want the same opportunities as everyone else to enhance my skills, to be empowered by services and to be as independent as possible.

    One of the things I have most wanted over the years has been to get a degree. When an opportunity arose to take a degree a few years ago I jumped at the chance. I started the degree, I had told the university that I was autistic, but things didn’t work out. I struggled with things (not the content of the course) and couldn’t seem to get things resolved and ended up quitting the degree vowing that I would never try to do a degree again and would likely never do any kind of further education again. I now will not take any academic course. I won’t put myself in that position again.

    I used to take courses regularly and attend courses regularly (like day or weekend courses about therapy or coaching), but I don’t now. In my last job I ended up hating having to attend courses and clinical supervisions. In previous jobs attending courses has been my favourite part of the job, because I love learning, but I would attend therapy training courses and it would be a day or two of why I think wrong for the job and why I shouldn’t do the job because I think about things differently, and the same in clinical supervisions. I would attend group clinical supervisions and the supervisor would say things like ‘I’ll ask you all and then come to Dan because he is obviously going to have a different opinion’ and this wasn’t said in a positive way. Then when I didn’t say much one session he said ‘I want to know what you all feel about one of you not speaking today?’ I knew he was talking about me and so went to say I can answer that and say why I haven’t said much and I was told ‘no, you had your chance to speak, I don’t want to hear from you now’. Other staff (all of us managers of teams of family support workers and supporting social-care level families ourselves) found supervisions so uncomfortable and complain to their managers about the way I was treated in the sessions, but these weren’t rare occurrences and not just with that supervisor.

    So I rarely feel empowered. I find it best to keep away from people, which is why as soon as I was able to afford to do so after losing my job I stopped seeing clients, and then as soon as I could afford to do so I stopped teaching live courses and if I could afford to do so I would stop interacting with people online. For years I have had people above me tell me I think about things wrong to be a therapist, despite client’s giving me positive feedback and colleagues and staff of mine and students giving me positive feedback. I have only ever had one manager be positive about my abilities as a therapist/coach.

    15. I want support to get a job and support from my employer to help me keep it.

    I am currently self-employed. I don’t really know what I want. I know I don’t like being self-employed, but there is no job available which suits me and no support I’ve ever found to help me find a path or role which meets my needs and is what I would like to do for a living. I struggled in employment and was made redundant from my last job following workplace discrimination, constantly feeling anxious, depressed and suicidal, and I don’t know of other jobs I could do, let-a-lone afford to do. I also doubt employers abilities to support me in keeping the job and in best utilising my skills and abilities, and I have never been able to find any autism charities etc helpful, they seem to spend time focusing on what they can do for themselves and raising money to continue, but don’t seem to promote or support autistic individuals who ask for support etc, so I just try to spend most of my time keeping myself to myself and hope that maybe one day one of my books will be popular enough that I don’t have to teach eCourses or do YouTube or interact on Facebook and Twitter, and can instead just spend my days going for walks in the woods or beach and write books for a living perhaps releasing a book a year. But I know this is very unlikely…

    So, my experiences going through the priority challenges haven’t been very positive. There are glimmers of positivity, but a lot of uncertainty and a lot of randomness where you have to be lucky to have had a good manager, or positive experience. As I have often mentioned, there is improved awareness of autism now, what is needed next is to create improved understanding and support for autistic people. Hopefully over the next ten years that will happen.

  • The Autism Act 2009: The Next Ten Years

    April 5th, 2019

    Looking back to the past, when I was a child and teenager there was very little awareness of autism among people, including among professionals. By about 2000 awareness among professionals working within education and social care was increasing and by the time The Autism Act 2009 arrived it was quite common among educational and social care professionals and perhaps medical professionals working with children to be more aware of autism. Autism and Asperger’s were also becoming terms parents would hear more and so parents seemed to increase in asking professionals whether they think their child might be autistic or have Asperger’s.

    I think there are a number of reasons for the increased awareness at this time. I think the main reasons were all of the controversy around whether the MMR vaccination causes autism, and I think the increased use of social media and the internet in general meant that people could search for information more readily and find the terms autism and Asperger’s and then connect with others who had autistic children.

    It was common to work with parents who were frustrated that they believed that their child was autistic but professionals didn’t take them seriously and they couldn’t get autism assessments for their children. In 2009 I held a group where parents had a say about what services and support they wish was available in the area. The main response was that there was no support to get an autism diagnosis for your child or teenager and that there were no support services available to help. There were some charities who would offer some support, but only to those with a diagnosis. Also that there was very little information available about autism. It was common for me to work with parents and when I would ask how they would like things to be, they would say things like that they want their child to listen more. I would ask how they would know if their child listened more and they would say that the child would be looking at them when they talk to them.

    These children would be autistic and so I would think that it was normal for them not to be looking at or making eye contact with the parents, so I would ask what they know about autism given their child has an autism diagnosis, and they would say that they don’t know anything. They didn’t know that lack of eye contact is common among autistic people. Usually once they knew this they wouldn’t focus on lack of eye contact as being a problem and we would look into what other signs there would be that their child is listening.

    Since around the time of The Autism Act 2009 there seems to have been an increase in funding around autism support and more going into supporting adults with autism, although her in West Sussex we lost one of the best autism support services in our area in 2010 due to government cuts to the local authority which lead to a reduction in funding from the local authority to the charity. Another similar company took its place, but the benefits of The Autism Act 2009 and getting additional funding into the county was really initially just adding some funding back in where it had been recently cut.

    What was different was having more of a plan, having an expectation that there would be an autism lead for the county, that there should be staff training offered to staff who work with autistic individuals and that GP’s and those who assess the care needs of individuals should have specialist autism training, and that there should be a clear pathway to diagnosis for children and adults and post diagnosis support.

    My opinion is that if all of this was followed it was kept very quiet. I worked for West Sussex County Council and for Arun District Council between 2007 and 2015 within social care roles often dealing with autism as part of my role whether it was supporting families to seek diagnosis for someone in the family, or supporting families to find support following a diagnosis. I regularly attended multi-agency meetings to discuss families and their needs, I worked closely with social workers for the families and with health professionals from psychiatrists to health visitors and educational professionals. I was involved in multi-agency meetings to identify what services are available to children and families with the idea of us creating a catalogue of support services.

    In all of that time I never knew who the autism lead was or of meetings taking place regularly to look at The Autism Strategy for the area and despite trying to be actively involved in any meetings to do with developing and improving support for families in my area I never found any way of being involved in these meetings, either as a professional or as an individual living in the county.

    Looking forward how would I like to see things progress?

    I think that it is great that there is more autism awareness now generally and that there is an autism strategy, but I still think there is a long way to go. Here are just a few ideas for what I would like to see over the next ten years.

    • Compulsory Staff Training

    One of the things I would like to see is that it is made compulsory for all companies which employ staff to have staff training around autism and mental health awareness and this training should be compulsory for all those in the company, it shouldn’t be just for staff and not management. Manager’s of all companies should be required to take training about managing autistic staff and supporting staff with mental health issues and how they can get the best out of those staff (training should also be provided in relation to other areas like ADHD, Dyslexia, etc). This training should cover areas like signs and symptoms, and strengths and challenges.

    • Autism and Mental Health Awareness In Schools

    Schools should teach students age appropriately about autism and mental health issues. Autism awareness should be taught in schools from primary school (and likely with teaching about other relevant areas like dyslexia etc) helping children to learn and understand how others process the world etc. Then from the start of secondary school also teaching about mental health issues. I have had many teens say to me that from talking with me they realise they are depressed or having panic attacks or anxiety etc and that until they were talking with me they worried something was wrong with them. Many have said they don’t know where to find support, what to do to help themselves etc.

    • Autism And Mental Health Awareness Programme Accessible Through Schools For Parents

    I know of some schools where they do offer talks about autism and mental health, it would be great if this was something made compulsory that schools had to offer including guidance on what parents can do and where parents can access support. It could be that much of this could be done with webinars or videos on the school website, or perhaps a video series could be made maybe in conjunction with The National Autistic Society and Mind that all schools could link to and promote to parents that can have children and teens talking about their experiences as well as professionals and adults who are autistic or who have or have had mental health issues sharing experiences about what is helpful and what a parent can do to support their child/teen.

    • Businesses Being Autism-Friendly

    Almost everywhere I go I find reason’s why I struggle in those places and I wish that changes were made to make them autism-friendly. Businesses can have set times and days when they will have their lights on lower and any music on quieter and reduce the amount of stimulation on those in the business premises.

    Businesses can teach staff about interacting with autistic customers. For example, I get annoyed if I go out for a meal and staff keep coming over to ask if everything is okay, but also get annoyed when I can’t get attention to pay. What I would like is maybe lights on a table that I can turn on to say I want someone to come to the table so that I can give a clear message.

    Businesses can also look at making sure processes are clear about what to do in those premises, It can be confusing when you don’t have clear guidance. Also not to create confusion, for example, I get confused when ordering food in fast food outlets where I have mentally rehearsed my order, I even rehearse it in the order I know they always want the information and yet as soon as I have said what I want in detail they reply ‘do you want to go large?’ despite me saying I wanted regular, they then say ‘do you want any of this with that?’ despite me already stating what I wanted, then they will say ‘and what did you want after this?’ and I will have forgotten because I had already said my full order, and now I can’t remember what I said, I just need them to have entered what I said as I was saying it, not asking me follow up questions trying to up-sell etc, I just end up getting angry and likely to walk away.

    What would you like to see over the next 10 years?

  • The Autism Act 2009: Employment for Adults With Autism

    April 4th, 2019

    It is ten years this year since The Autism Act 2009 was introduced. This week I am doing a series of blog posts about The Autism Act 2009 looking at what things were like before The Autism Act 2009 and what things are like ten years on. I am sharing from my own personal experiences as an autistic adult who received and adult autism diagnosis in 2015 and as a professional who has worked with autistic client’s since 1997 in a variety of settings. My experiences are all based on the local authority I live in, so I would be curious to discover whether others experiences from other local authorities is the same, worse or better.

    The Autism Act 2009 guidance is divided into sections based on the 15 priorities outlined in the Think Autism Strategy, one of the sections is about employment for adults with autism.

    8.2. Some people with autism will require support to get or keep a job. Yet adults with autism are currently significantly underrepresented in the labour market, which has a detrimental impact on their financial circumstances and social inclusion, as well as being a waste of skills and abilities. The Autism 2010 strategy and Think Autism included commitments aimed at increasing the number of adults with autism in work through the provision of guidance and training to employers and employment support services and ensuring adults with autism benefit from employment initiatives. The Department for Work and Pensions has since introduced the Work Programme which provides personalised back to work support for unemployed people, including disabled people. It has also established Work Choice and Access to Work,60 both of which help disabled people, including people with autism, find employment and stay in work.

    In 2005 I was cycling to work when I was hit by a truck. Unfortunately, I came off worse. I ended up in hospital for a few weeks and then unable to work for perhaps a month more than this, and when I was back in work I was unable to do most of my job because of my injuries and was made redundant. At this point I was more capable than I was when I was younger and I had far more skills and experience but it still took me two years to get back into work.

    There are many aspects of being autistic which make getting into work and holding down a job challenging, even being self-employed is challenging. I got my first job in a holiday camp as a teenager. I didn’t want to have to go to work, I wanted to stay in education, but my circumstances meant I didn’t have any choice but to apply for different jobs and try to get something and say yes to any job I was offered. This was the mid-1990’s. The role I had in the holiday camp was to work in retail catering in a food court. I had to clean and clear tables and serve customers, either serving them food or serving them on tills.

    I didn’t have an autism diagnosis and had never heard of or thought about things like autism back then. I was fine with cleaning and clearing tables. This was a job other staff saw as the lowest job and the one no-one else seemed to want to do, but for me, I liked it, I liked just going from table to table, pushing chairs in, clearing away crockery and cutlery and cleaning the tables. Occasionally someone would come over and say that there were no knives or something and I would have to let someone know who would then refill the knives or whatever it happened to be, but I didn’t have much interaction with people. I struggled with the noise and how bright the venue was, but I was able to largely focus on being in my own mind and shut out external stimulation.

    After a short period of time I was moved into one of the food venue areas where I had to work on till and had to serve customers. I found this terrifying. I didn’t know how much food I should give as a portion, I struggled to hear what people would tell me they wanted and retain this information while I put these things onto plates. At the till I worried that I would press the wrong button that would crash the till and break the till (in future jobs I still have this catastrophising, I think when using computer programmes in work that I will press the wrong button and will crash the entire network of that programme and wipe everything etc, using cashpoints or online banking I worry I’m going to wipe everyone’s bank details if I press the wrong button, in supermarkets I worry using self-service I may bring down all the tills if I press the wrong thing. My wife is forever telling me it won’t happen and isn’t possible), I struggled with working out change based on what customers gave me, even though the amount to give back to the customer was written on the till.

    There was just so much going on that I couldn’t focus on what I had to do. I struggled to know the names of what customers were ordering and to then find the names on the till when I can’t even think what the name of different items are. It got worse if customers interacted with me, or worse still, if I was expected to interact back with them, and even worse if customers said things like ‘you have given me the wrong change’. When I would know I gave the right change. There seemed to be an arbitrary delusion that staff were expected to pretend to believe in that customers are always right, yet I knew of times they were wrong, so if I knew it was unlikely I had made an error with the change then I would stop the queue and would cash up the till. If the till was up then the customer was right, if the till was correct then I was right. This didn’t go down well when during the summer there could be 1,500 customers in the venue during the lunch time and a hold up of many minutes to cash up a till would upset a lot of people. It didn’t take long for management to decide that the best place for me was in the pot wash.

    The pot wash was the ideal venue. The pot wash machine was noisy and the lights were still bright, but I could look down to avoid much of the light and the faster I worked the more time I could have the machine turned off, and with the machine off the room was much quieter than being in the main venue area with noisy staff and customers. Most of my time in the pot wash was spent alone just loading and unloading the giant dishwasher. I rarely had to interact with people.

    I was fortunate doing this job that most of my time doing the job I had very good managers. There were deputy managers, section leaders and staff who I felt were bullies, but most of my time I could avoid them. Most of my time doing the job I did pretty much the same thing every day. I liked the routine, I liked the fact the job was active, I liked the fact the job was largely something I did on my own, but I didn’t like it when it would get to special weekends or around Christmas or another big holiday period because myself and other staff would be told that we had to do waiting. The thought of being a waiter would terrify me and I would just walk out (my default option to change and uncertainty is to just walk out and quit the job. The trouble is that this means it is easy to make yourself intentionally unemployed and then you can’t get benefits for a period of time) and not work on any day that that was the expectation on me. I was very honest about this. Some managers would negotiate for me to help in other pot washes or would agree to me doing tasks others are complaining that they don’t want to do, like polishing the cutlery.

    At one point I didn’t like something and said to the manager of the venue that if that wasn’t changed so that I could just get on with my job like normal I am leaving. He said things are the way they are, and so I walked out. I didn’t think at all about the consequences, I didn’t know anything about the benefits system or even that there were such things. I just went home. At home, once my money ran out from my last pay I didn’t think anything off it, I just assumed that I would stay where I was and possibly at some point my landlord will tell me to leave due to not paying rent. I wasn’t eating because I had no money for food and hadn’t thought at all about how I might get food. Other than looking in newspapers I didn’t know how to go about getting a different job and didn’t think about doing this. I just sat at home with no plan of action and assumed if needed I would have to move to live in the woods. Fortunately my manager came round everyday shouting up the side of the building to my flat to get my attention to talk me into coming back to work. Eventually he was successful. I had been out of the job about four weeks and he agreed I can come back and just do my pot wash job like normal, so I did this.

    When the holiday camp was open limited hours during the winter season I earned less each week than I had to pay in rent, so I was unable to pay my council tax, I didn’t have electricity, so I wouldn’t have hot water or heating, and I couldn’t afford to buy food, so I wouldn’t buy food. I would eat in work on my lunch break on the Friday, Saturday, Sunday and Monday and then wouldn’t eat until the next Friday. I just accepted things the way they were, I didn’t think about doing anything about my situation. When it got dark, I would sit in the dark at home until I fell asleep. When it was really cold there would be ice on the inside of the windows. I would drink cold water often, but for months this was my life. I would try to wash my clothes using just cold water, I couldn’t afford to buy soap or toothpaste or washing powder, or anything. When I got paid I would give all the money to my landlord and apologise for not being able to afford to pay all the rent, and would explain that currently it is winter season so the holiday camp is shut mid-week, but once it is open fully again I will pay my arrears (I was about £2 short every week). The landlord was okay with this, but it did mean I had no money for anything else once my rent was paid and that I ended up with county court judgements for unpaid council tax, which they took from my wages before I got my wages each week.

    So, this was all long before The Autism Act 2009, but what kept me in the job was a very good, supportive manager. Eventually I ended up in a relationship. The person I was in a relationship with felt I shouldn’t be living as I was. With them I became aware of the job centres. When things in work significantly changed and there was no way around those changes I walked out again, but this time I knew about the job centre so I went and looked for another job and got a care job, starting my career in the care sector. During that job I struggled with aspects of the job, I had a relationship with the managers that was strained at times as I wouldn’t see them as being anything other than human and so would talk to them bluntly and honestly as I would anyone else, and this didn’t always go down well. I left my first care job when they were making changes I wasn’t happy with, I left my next care job due to getting sick and tired of discrimination and then left my third care job due to being hit by a truck and being laid off because I couldn’t do my roll.

    I tried to get support from the job centre to find a job as quickly as I could but there was no support because I didn’t have a disability or hadn’t been out of work for over 18 months. I said I wanted to be in work as quickly as possible, so wouldn’t it make sense to help me do this, rather than say I can’t access support until I have been unemployed for 18 months.

    After about six months of being unemployed a member of staff at the job centre felt that there was something different about me and that they would talk to RBLI, a service which helps those with disabilities to find work. They took me on and helped me over the next 18 months or so until I was in work, and then for about a year they did frequent follow up visits to me in my workplace to see that I am getting on fine in the job and to continue to support me where needed.

    So, even before The Autism Act 2009 there were some services available, what there wasn’t though, was a broader understanding from most of the job centre staff, and they didn’t do things to facilitate the way autistic people process things. For example, I would turn up at 11am for my 11:25 appointment with the benefits advisor and frequently she would be running late. She wouldn’t tell me, or anyone this. She would get to 12pm having not yet seen me for my 11:25 appointment and would go on an hour lunch break, then return at 1pm and carry on seeing us. I once raised this issue and said if she is going to be over-running she should say she is running late and give a new time to come back to see her, not just leave us waiting. Her response was that I am unemployed, so it isn’t like I’ve got anything else I need to be doing, so I can wait and that if I walk off then it will go down as a no show and I can lose my benefits.

    This was all before The Autism Act 2009, so I like to think things have changed now. I know there is more support for those diagnosed and identified as autistic, but I don’t know if there is support for those who are undiagnosed and perhaps don’t have anyone in their life to identify that perhaps they could be autistic?

    During my time unemployed I had many jobs offered to me. I have always been reasonably good at interviews, I just learned what you are supposed to do in interviews and then follow this process. My problem was after the interview. I was offered a sales job in a shop, but posted a letter through the door of the shop a few days before my first shift apologising that when it opens I won’t be able to do the job. It was too scary, the thought of using tills, of interacting with customers, etc. I was offered a tele-sales job, I arrived for the first day, walked into the entrance, and in seconds I turned around and walked out again without talking to anyone. There was bright strip lights over the desks, it was noisy and chaotic with all the talking from rows of staff who were virtually shoulder to shoulder and I struggle with using telephones, I had hoped I would magically just overcome this on arrival at the job, but it was as scary to me as it had always been. I was offered a job for a domestic violence charity linked to the NHS. I didn’t meet the criteria for the advertised job so they created a job especially for me and said that I was the first male they had ever thought of hiring, they had never thought about a male doing the role until they interviewed me and I convinced them of the importance of male domestic abuse workers. On my second day I told the manager that I can’t do this, and I quit. It was a small office with a handful of staff, but I felt very exposed in the office. I was expected to talk on the telephone, take calls from victims of domestic abuse, make phone calls to professionals etc, and to walk around the hospital to talk to different departments etc and be very flexible with my working. I was told that if someone phoned five minutes before my shift was due to end I would have to stay until I have dealt with the caller. In two years of unemployment I applied for just two jobs I really wanted to do, both of these turned me down. One was a local homeless charity working in a homeless shelter, the other was working for what was the Sussex Autistic Society (which no longer exists due to lack of funding). All the other jobs were just me applying for everything I could regardless of how I felt about the job, just because I needed work.

    Each time this impacted on my benefits and I had to have another assessment. It was one of these re-assessments which led to the benefits person who was doing the assessment for about the third time with me in the space of six months or so that led to them referring me to RBLI, because clearly I was saying ‘I walked out because it was too noisy and overwhelming’, ‘I walked out because I was terrified of using the tills’, etc… Each time they didn’t stop my benefits for a period of time like they were supposed to do, they just re-instated my benefits, and then after six months, they got me support from RBLI who on paper I didn’t meet the criteria of because I didn’t have a disability.

    So, my reason for sharing this is to show some of the struggles with trying to get and hold down a job and where timely support is required. If I wasn’t in a relationship I wouldn’t think about many of the consequences because I wouldn’t have anyone else but myself to think about, just like when I was in the holiday camp, yet when being unemployed impacts on a loved one, I go outside of my comfort zone for them, but not everyone will do this, and not everyone will be in a relationship. If I was single when I lost my job following being ran over I would have let whatever happens happen and would fully expect to become homeless and live in the woods. I wouldn’t have done things which make me feel very uncomfortable.

    In 2015 I lost my most recent job, this is obviously since The Autism Act 2009 came in and I received my autism diagnosis a few days after my final shift. Because I am in a relationship and my wife works full-time I was only going to be able to claim Job Seekers Allowance for six months, after that time it changes to being based on income and as my wife works I wouldn’t be eligible for that. I decided to just set up self-employed. Ideally I would want to have an employer, I would want to receive a regular wage each month, have someone telling me what I need to do and when by, and have a fixed routine of working hours etc. There are many aspects to being self-employed I dislike, as well as some things about my current situation I do like.

    Before my last work day I had spoken with benefits advisors, but other than being told about claiming contribution based jobseekers allowance, I didn’t find out about any other benefits I could claim or any other support I could get. It was only a couple of weeks ago when I happened to read in a local newspaper about an autism support group for adults based out of Littlehampton (a local town) and I wondered how I had never heard of them given that until 2015 I was working with high level social services cases based out of Littlehampton, with some of the adults being autistic and some of the children being autistic. The article was about the organisation being saved for a bit more time by securing continued local authority funding. I was sat at my computer and couldn’t remember exactly what the organisation was called but wanted to check it out. I couldn’t find it anywhere from a Google search, I had to wait until I found the article in the local paper again to search directly for it, and found very minimal presence online and thought, if they are struggling to hang on to funding and I didn’t know about them and I was working as a professional within social care until 2015 and attending all the multi-agency meetings etc, and on learning about them I still struggled to find them on Google searching for the support, then what hope do others have of finding them.

    This has been part of my challenge, that despite The Autism Act 2009 being in for over a decade, my experience is that there is increased awareness about autism but not about what services are available or logical and easy to find information. In the last month or so the local authority website has improved. I also notice that there are now a few different autism courses available on the local authorities training gateway for staff to take about autism in children and adults ranging from a short online course to longer classroom tuition courses. What would be great would be if this was made compulsory for all staff to have to attend.

    Some of the challenges I face are assumptions people make about what I can do. Because I can come across as assertive and confident people don’t always seem to realise that I struggle with things. For example, as a self-employed person who has spent since 2015 unsuccessfully trying to make a career out of raising autism awareness, wanting to give talks about autism etc, people always say ‘if you telephone this person, they may have some contacts for people who would like you to hold talks/workshops etc for them’. But one of my issues is that I really struggle with making telephone calls. It can take me months if at all to make a phone call, and if I do make the telephone call, having finally psyched myself up for it and I get an answer phone message, or I get told the person I need to speak to isn’t available can I call back etc, I won’t. It was very difficult to make that call the first time, I am very unlikely to try it again.

    I get told ‘why don’t you set up your own talks/workshops etc?’. Again, I have the same problem. I struggle with the interacting with people part. I can turn up, give a talk or teach, answer questions and then leave. But I struggle to organise venues, sort out promotion, interact with people, make relevant telephone calls, travel to places, and stay places, etc and I struggle to be the sole person running something, I like to have someone else with me supporting me who is happy to talk to people, who can run errands for me where I don’t feel I can do it myself. I try to do things despite the challenges I feel, but, like most people, I frequently get rejected and each rejection makes me feel increasingly that trying wasn’t worth it when the outcome was to get rejected any way. This is why I no longer approach charities and organisations to try to link up with them to hold talks etc, because I have spent years being rejected by autism charities etc or not getting any response from them (so no email replies, not managing to get through to who I need to speak to on the telephone, not getting any replies of support or guidance on social media, so I stopped trying because each try is draining and has taken weeks to psych myself up to do.

    I am currently in a position where it would be great to be employed, but like I had when I was unemployed following being ran over, the question is always what would I want to do? I don’t think there is a job for me, and I am sure other autistic people feel the same.

    One question I asked when I was unemployed before was ‘what could I do?’

    I wanted to sit with someone knowledgable and identify my skills and identify what I like doing or how I would like to spend my time and then see if there are any jobs which match that. I always point out that if pot washing paid enough to live on I would probably do that, or if I could get a job out in nature every day I would do that (I don’t drive, so it would have to be something where I didn’t need to be a driver to get to work or for work).

    If I was good at photography I would happily be a wildlife photographer sitting for days on end waiting to capture the perfect photograph and being paid for this.

    I think The Autism Act 2009 has helped to create some funding for services and there are some services which adults can access that are out there now, but finding them can be a struggle and then there is a question about what help they can be in supporting autistic people and undiagnosed autistic people to gain and maintain employment. There is also staff training now within local authorities, but without it being compulsory you don’t have the relevant awareness among managers, and as autism training isn’t compulsory for all businesses you don’t have the support in most jobs from management where they will ensure your work environment is set up appropriately, where they have looked at your needs and strengths. Very few workplaces I have been in are autism-friendly.

    In my last job I became depressed and suicidal solely because of workplace issues. I wanted occupational health support, but without a disability or illness I couldn’t get the support. I was very vocal about changes which were being made to my working conditions and how these changes would significantly negatively impact on my ability to do my job. I would like to see occupational health support people who display autistic traits even without a diagnosis, and in reality feel they should support anyone who is struggling. If I had been able to have an occupational health assessment, they would have identified what workplace conditions I required and would have been able to state that those are the conditions I need to have made for me (in my case, this would be the conditions I had already before being told things were changing).

  • The Autism Act 2009: Identification & Diagnosis of Autism in Adults

    April 3rd, 2019

    It is ten years this year since The Autism Act 2009 was introduced. This week I am doing a series of blog posts about The Autism Act 2009 looking at what things were like before The Autism Act 2009 and what things are like ten years on. I am sharing from my own personal experiences as an autistic adult who received and adult autism diagnosis in 2015 and as a professional who has worked with autistic client’s since 1997 in a variety of settings. My experiences are all based on the local authority I live in, so I would be curious to discover whether others experiences from other local authorities is the same, worse or better.

    The Autism Act 2009 guidance is divided into sections based on the 15 priorities outlined in the Think Autism Strategy, one of the sections is about identification and diagnosis of autism in adults and assessment of needs for relevant services.

    In 2014 I was struggling in work with workplace discrimination. I was depressed and suicidal. As 2014 drew to a close I started thinking that the only way forward would be to see if I am autistic as I suspected, because if I was then my employer would have to get occupational health involved and would have to look at my needs and how to meet them, and if I wasn’t autistic, maybe I can get some idea of why I think and behave so different to others around me and what can be recommended to get the appropriate support in place.

    I had worked with autistic people, from children to autistic adults since 1997, I had helped parents to seek diagnosis for their children, so I knew what I needed to do to get a referral for an autism assessment. despite The Autism Act 2009 my experience supporting families was that GP’s rarely seemed to know what they needed to do. Parent’s would visit their GP and explain why they think their child is autistic and that they would like an autism assessment referral, the GP would write a letter to the Child and Adolescent Mental Health Service (CAMHS), who would often promptly reject the letter. I would get told that it was because the letter didn’t show any evidence that the child might be autistic and there is already a long waiting list.

    So, although GP’s should know about autism generally and about what would need to be in a letter when requesting a diagnosis, my experience was that this was rarely the case, they were sending letters stating a parent wanted an assessment for their child, but not making it clear why. I don’t know if this is due to a lake of training, or due to a lack of time, or both, but I went to see my GP knowing that if the GP didn’t write the reason’s why I maybe autistic then my referral may be rejected. I would expect a GP to know what questions to ask to gather the required information for the referral letter, but I went in with the information all written down to make sure I didn’t forget something I needed to say.

    The GP asked me why I wanted an assessment but said he didn’t feel I needed an autism assessment, I just needed counselling because of being depressed. I said I wanted to have an assessment and didn’t feel he was the one to make the decision about whether I needed an assessment or not, just the one who should put the information in a letter to make the referral. While in the appointment with the GP I felt like I was being stupid, I felt frustrated, I was getting annoyed with the GP and their attitude which came across like ‘you’re not autistic, you are just struggling with work and need counselling for depression’. The GP agreed to make the referral but said it could be a few months before I hear anything. NICE best practices are that you should have the first appointment within three months, so I was expecting that it could take a while, and if it was a few months, this is better than it used to be, at least in relation to children’s assessments.

    A few months later I had a letter from a counselling service. I contacted them and questioned whether they were doing the autism assessment because that seemed odd. They said they don’t know what I am talking about and that they have received a referral to say I wanted counselling for depression. I explained I wanted an autism assessment, I hadn’t asked for and didn’t feel I needed counselling at this stage. They gave me the telephone number to phone to talk to the relevant people about my autism referral. I contacted them and they said that no referral had been made. I booked an appointment to see a different GP. I explained everything to this GP and said I don’t want the same incompetence and treatment. I explained everything I had said to the previous GP, they made a referral and within a few months I was contacted by the autism assessment team and sent forms to complete and an assessment date. Within perhaps five minutes in the assessment with my mum, when she left the room, the therapist said I am definitely autistic. I wanted to know how she could tell so quickly, and then we got on with the rest of the assessment.

    A month or so later I received photocopies (at my request) of my assessment forms that I had completed and shortly after that I received the official assessment. I was recommended to get an autism card from the National Autistic Society and to refer to the National Autistic Society website for information and resources etc, and it was felt I probably didn’t currently need further additional support as my wife is very supportive of me. I didn’t get any advice around benefits I may be entitled to (and have never sought advice around this), I never found out about any local support groups etc. I pretty much got the diagnosis and that was the end of it.

    Unfortunately, it had taken so long by this point to get the diagnosis that I had lost my job and so had become self-employed. In my assessment the therapist had said I should take action against the discrimination I had faced in work now I know I am autistic and so they had been discriminating against an autistic person. I explained that I had lost my job and my concern would be that because my wife works I can’t claim benefits, and her income doesn’t cover the bills, so I need to just dive in to focusing on making an income so that we don’t become homeless, I can’t be focusing backwards on fighting people for discrimination who I no longer see.

    One thing I did was because I had built up all of this focus and energy on seeking a diagnosis to address my work situation, that once I had the diagnosis I had nowhere for all of that energy and focus to go, so I wrote my autobiography ‘Look Into My Eyes’ to try to share what it is like to be autistic, both the strengths and challenges and what people can do to help autistic individuals and what autistic people can do to help themselves, trying to use my personal and professional experiences. Then my wife wrote a chapter from her perspective about being in a relationship with an autistic individual.

    I felt at the time of going through the process I went through that if it wasn’t for all of my additional knowledge having worked within social care for many years that I wouldn’t have been assertive enough with the GP’s, that I wouldn’t have know what to do, I probably wouldn’t have known that I might be autistic, no-one around me, like work management would have been likely to identify and recommend that I seek a diagnosis. There was no clear, easy to find pathway, despite The Autism Act 2009 talking about a pathway to diagnosis and a post diagnosis pathway of some kind.

    I didn’t know who the autism lead for West Sussex was when I thought about writing these blog posts so I Googled it (as I couldn’t find it by searching the local authority website). Back in January and up to the middle of February nothing came up, there was no information on the autism lead and not much information generally about autism. Then as I was refreshing my search (I leave tabs open on my browser for months at a time while I’m working on things) one day in early March suddenly a top search result appeared which was never there before which named the autism lead I had been searching for and the page it took me to had been last reviewed 20th February 2019, so either it was always available and for some reason it didn’t show in searches until now when it suddenly shows at the top of Google’s search results, or it was new and for some reason had been decided to add all of this new autism information shortly before autism awareness week 2019 on the tenth anniversary of The Autism Act 2009.

    Prior to the last few weeks I had been unable to find any helpful autism information from the local authority about a pathway to diagnosis or post diagnosis support of any kind, now it is more clear.

    I think, without greater awareness about autism in adults the identification isn’t really being met and, at least in 2015, it is still a challenge to seek diagnosis, not all GP’s are understanding and supportive of the idea of making a referral and they don’t necessarily know enough about autism to be able to ask the right questions to put the relevant information in the referral for an adult diagnosis.

    It maybe that things have improved since I went through the process in 2015, or that things have improved in other areas, I would be curious to hear others experiences of seeking an adult autism diagnosis and whether this was easy and went smoothly and what you were made aware of in the way of post diagnosis services and support available. This is an area where I haven’t seen an improvement, I think it is a case of, most people around you won’t recognise you may be autistic as an explanation for struggles you are having, and it is hit-and-miss with GP’s whether they will take you seriously or dismiss you and whether they will know how to make an appropriate autism assessment referral.

  • The Autism Act 2009: Training for Staff who Provide Services to Adults with Autism

    April 2nd, 2019

    It is ten years this year since The Autism Act 2009 was introduced. This week I am doing a series of blog posts about The Autism Act 2009 looking at what things were like before The Autism Act 2009 and what things are like ten years on. I am sharing from my own personal experiences as an autistic adult who received and adult autism diagnosis in 2015 and as a professional who has worked with autistic client’s since 1997 in a variety of settings. My experiences are all based on the local authority I live in, so I would be curious to discover whether others experiences from other local authorities is the same, worse or better.

    The Autism Act 2009 guidance is divided into sections based on the 15 priorities outlined in the Think Autism Strategy, one of the sections is about training for staff who provide services to adults with autism. The focus is on staff within the NHS and local authority staff. It explains that many public services staff provide services to autistic adults, so the training should be for all staff, not just staff in specific roles, but there should be particular focus on training for staff working in health and social care.

    1.1. Improving training around autism is at the heart of the autism strategy for all public service staff but particularly for those working in health and social care. This includes not only general autism awareness training, but also different levels of specialist training for staff in a range of roles, where this is needed to fulfil their responsibilities and for those who wish to develop their knowledge of autism.

    In my roles I have had varying degrees of autism training but none of it was since The Autism Act 2009 came in. I worked for the local authority in a social care role from 2007 to 2012 and autism was a hot topic among the families I worked with, a large number of them felt that their children/teens were autistic and they struggled to get their children seen by a specialist. As a practitioner working for the local authority I definitely felt that there was a shortage of training and awareness around autism for colleagues of mine within social care settings and for wider colleagues who worked in other departments.

    As an undiagnosed autistic individual during this role I suspected I was probably autistic and my manager at the time suspected I was autistic. On our first shift together she said to me that she thinks I have Asperger’s and is it okay if she treats me as such because she feels that it would help our working relationship and help get the best out of me in the role. I was obviously okay with this as someone, especially a manager who had worked for many years within social care and family support work was demonstrating that they recognised in me something I suspected about myself but at that point hadn’t spoken openly about suspecting.

    In 2012 I work for a local council managing a team of family support workers and offering family support myself. There was no training I was aware of offered to council staff and no training offered to myself or other colleagues around working with autistic client’s. There was the option for individual staff to request training they wanted to attend, so some staff could choose to take training learning more about autism, but often the training staff would request would be about working with autistic children.

    Because of my previous manager and her openness with me about how she thought I was likely autistic I started saying that I think I could be autistic if asked when describing myself. For years I had described myself to people soon after meeting them, if it seemed like it would be sensible to do so because I was used to people thinking I was doing things on purpose to annoy them or they would start talking about me behind my back about how rude I am or how weird I am. So, if I was going to be working with a team of other staff, as I have conversations with them about myself I would tell them that I don’t think of saying ‘good morning’ or ‘good bye’, that I don’t think of asking ‘how are you?’, that I am blunt and don’t realise that people are going to take offence with me just being direct and honest, and this had helped me to get on better in workplaces. Unfortunately this has normally only helped in relation to staff I have managed and staff on the same level as me. Often with managers I have been treated like I am just trying to make excuses for not behaving as they would like.

    I started telling people about myself in this way because of work experiences. In a children’s home I was working in apparently staff complained to the directors of the company about me not saying ‘good morning’ or ‘good bye’ etc, and I was told I would get sacked if I didn’t start saying and doing these things. I struggled to remember to do these things and kept being threatened and warned. I was a member of the union Unison, so I approached them for help. At this point I thought I often behaved similar to many of the children we had in our care, but I wasn’t at a place where I was thinking that means I might be autistic. Unison told me that I am clearly being discriminated against, but that there is nothing they can do to help, that I don’t have a disability, I am not in a minority group and I am not being discriminated against for defending someone with a disability, a female or a minority group. My conclusion was that being part of a union was pointless, if the one time I need their help they say there is nothing they can do to help me, then I may as well stop paying to be a member.

    I left that job and in my next job I was open with colleagues about my actions to try to prevent a recurrence of the above experience, but I didn’t speak to the managers saying about my way of being because situations to do so didn’t really come up, so I got on fine with staff, but would have managers pulling me up on things which are annoying them, like me mimicking certain words or phrases people say, or copying bird whistles I hear, or suddenly tapping, or being direct, etc. At one point a manager raised all this with me in a supervision and fortunately was understanding when I said I couldn’t help these things and didn’t even know I was doing them until they were pointed out. He told me not to do them again, but he at least appeared to accept what I said. I never said at that point either that I thought I might be autistic and didn’t even give that label to myself in my mind. In this role I also got ran over while cycling to work one morning and in hospital my wife (who was my girlfriend at the time) was present and my work colleagues came to visit me. They wondered who Abbie was. I said she was my girlfriend. They said they didn’t realise I was even in a relationship, despite having worked with me for about a year. This annoyed Abbie, the fact that it hadn’t crossed my mind to mention her in work. Form my perspective they had never asked, so why would I have mentioned her?

    It was these experiences though, which built to me actively telling people, this is who I am, these are behaviours I am likely to do, I don’t mean any malice, etc., this is what behaviours from you will best help me, tell me if you want to talk to me because I won’t necessarily pick up that you want to talk with me about something, etc… And I would say I have a wife etc. I would be clear about what I struggle to do (like using telephones, being around lots of people etc) and what kind of work environment will get the best out of me and what work environment I would struggle with. I didn’t say I was likely autistic, even as I started thinking it myself until I had a manager who thought this having only interviewed me to hire me, and worked with me on my first day. This gave me the confidence, if asked, to say I think I could be autistic.

    When I worked for the local council from 2012 until I left in 2015, initially my previous manager had changed jobs to a role that meant she hired me into my new post (I obviously applied to work for her again, rather than stay where I was under new management). She knew what would get the best out of me, she placed me at a desk in the corner of the office with high desk dividers and no overhead strip light, instead I had a window letting in some natural light. In 2014, unfortunately everything changed. I had two managers, but the manager who seemed to understand me took on the lead role of managing me. When things changed that manager was no longer managing me at all and the other manager became my sole manager. They didn’t like me being in the corner of the room, they didn’t like answers I gave in supervisions and performance development reviews, they didn’t like my lack of apparent understanding of what I should report to them and what was unnecessary to report to them in terms of things like completing tasks I have been set.

    I tried to be open and honest about myself with them. I wanted them to communicate clearer and not assume that I would understand things or the meaning of things. For example, in a yearly performance development review there was a question “what have you achieved over the last year?” I wrote what I have achieved over the last year in work. During the review my manager asked if I was ‘taking the piss?’ because I had answered everything wrong and clearly not taken this performance development review seriously and had just rushed through it. I explained I spent hours filling it in and thinking about my answers. I asked how I was supposed to answer these questions? I was told that as a manager of a team of staff I should answer about my team, not just myself, so that first question I should have said what the team had achieved over the last year. I explained that that wasn’t what the question asked and this has never been raised when I have previously filled out performance development reviews. In a supervision I was asked if I have mental problems because of the way I respond to things. I explained that I think I might be autistic. I kept trying to be clear about my needs, but never got anywhere. I just became increasingly depressed and suicidal.

    This is well after The Autism Act 2009. My manager must not have had training around autism and autistic adults. I never saw signs of training being offered or taken up and if they had had training they hadn’t taken any of it into consideration.

    This has been my experience, that The Autism Act 2009 may suggest that staff should have training, but when autism training is offered it is usually non-mandatory training for social care staff and around autism in children, not adults. I haven’t worked for the local authority or council since 2015, so it may have improved over the last few years, but by 2015 nothing had come in within the area I work. I felt that local authority housing staff, receptionists, benefits and council tax advisors etc, should all learn about autistic adults and autistic children with some people in different departments taking further training so that all staff have someone in their department who they can talk to if they want to talk to a more knowledgeable person. Just like my view was that all staff should receive safeguarding training. I was involved in teaching safeguarding to many local authority colleagues, so this was starting to happen in the year before I left, staff who worked within social care roles were attending Mind mental health training, but there still wasn’t any autism training being rolled out.

    Hopefully this has changed and improved over the last few years? I would be curious to hear experiences of those from other parts of the UK about whether public service staff in your area receive autism training?

    I saw this as a gap in my area and so through 2015 to 2018 I tried to offer autism training myself. I gave a few talks locally for parents, but had no interest from local businesses, schools or the local authority etc., or from autism charities. I was offering to talk for free with just any expenses incurred covered. Although some of my talks were engaged with by parents, my focus was really on trying to engage people around understanding autism in adults and how you can best support those adults and get the best from them.

  • The Autism Act 2009: Ten Years On

    April 1st, 2019

    As mentioned a few months ago, what I decided I was going to do for autism awareness week 2019 was to take a look back at The Autism Act 2009. The act turns ten later in the year. I have been working professionally with autistic individuals since 1997 and received an autism diagnosis in 2015 following workplace discrimination which led to me experiencing depression and suicidal thoughts. It was being in this unpleasant state of mind which finally led me to seek diagnosis. Prior to this work colleagues over the years had mentioned about my similarity in the way I behaved to the client’s we worked with, some colleagues just commented on how I shared similar behaviours, others were more direct in telling me they thought I was autistic. I wasn’t blind to the similarities myself. I was aware that I did recognise myself in many people I supported, but I had a job and was content with my life and so didn’t even think about visiting a GP to seek a diagnosis, I didn’t see what a diagnosis would do for me.

    One trait of mine is seeing people as individuals with individuality. I’m not really a fan of labelling people – this annoys some people when they listen to my sleep stories, because I will often refer to people or other animals as ‘they’ rather than assigning a gender and saying ‘he’ or ‘she’ because I don’t see this as relevant to the story. I try to give a gender now just because I know there are people who dislike hearing a story where there is no reference to the gender of the lead character, to their partner, or other characters etc.

    In relation to autistic clients, I felt that the diagnosis was often unnecessary, you work with them as an individual with their own individual traits and needs. The diagnosis only seemed to serve a purpose in relation to meeting criteria for accessing certain services or funding, if the person didn’t need those services or funding then I couldn’t see why a diagnosis would be necessary. I could understand a diagnosis might help you know why you are different to others, if it is important for you (or perhaps for the parents) to know, but for everyday life, especially if you had a job and weren’t using any services, then I couldn’t see why you would seek a diagnosis.

    So, I have been working with autistic client’s since before The Autism Act 2009 came in. Initially the autistic people I worked with were in care homes, so they already had a diagnosis and an assigned social worker, the client’s weren’t exclusively autistic, they had various needs which led to them being in the homes, but a large percentage of them were. Then in 2007 I started working for the local authority supporting parents to reduce anti-social behaviour and youth offending of their children and teens. Again, not all of the children and teens were autistic, but many were and a good percentage of those didn’t have a diagnosis but had parents trying to get diagnosis.

    This was before The Autism Act 2009, here in West Sussex at the time parents could easily end up waiting 18 months to 3 years to get an autism assessment for their child or teen. It was common for children to be managed in primary school and it was often identified that they needed some more support than others, but the extent of this required support wasn’t often recognised until the child entered secondary school. Initially there would be talk that maybe they are just having trouble settling in, so the first couple of terms very little was done, then meetings would start taking place to look at the child’s needs as they were still struggling, in many cases the meetings were focused on how the child was displaying challenging behaviour of some kind, then the first year would end and they would hope things improve by year 8 (second year of secondary school), but when they don’t eventually the parent would be encouraged to perhaps seek an autism diagnosis for their child. Professionals often struggled to know how to tell parents that perhaps their child was autistic, although in other cases it was the parent ‘fighting’ the school saying that they think their child is autistic.

    Eventually the parent would visit the GP about their child, usually this would result in the GP making a referral to the relevant service (Child and Adolescent Mental Health Service (CAMHS) or Child Development Centre (CDC)), but the referrals were often poorly written and so would get rejected without a specialist ever talking with the parents or meeting the child. Then by the time they eventually do get on the waiting list they had to wait perhaps up to three years for the assessment by which time the child was continuing to deteriorate at school and those who I met were now getting into anti-social behaviour and youth crime and wouldn’t be diagnosed until they should have completed their GCSE’s, some would be on part-time timetables, others excluded or in Alternative Provision Colleges (what were Pupil Referral Units). Many left school with few qualifications and struggling to know what to do next, struggling with how they would transition to work and struggling with meeting criteria to get into college and were now ‘known’ by the police and anti-social behaviour teams as being trouble makers. Some parents by this point had given up hope, they had fought for years to get their child support and now felt it was too late. I had parents who would say to me that their goal now was to just endure the time left until they turn 16/18 (depending on the parent) when the child will have to move out.

    This was a very frustrating time. There was no Autism Act. My experience as a practitioner was that there was a lack of awareness of autism among professionals, a lack of awareness of what to do to help autistic people (diagnosed or not), GP’s didn’t seem to know enough in relation to autism, they would make inadequate referrals which would get rejected without the person being referred or their carers ever being met. There were very long waiting lists and no clear or easy to find information on what services were available to support autistic individuals or their families, or what people should do if they think themselves or someone else is autistic. Even working within the caring profession with families I struggled to find helpful information for the families I was working with.

    The Autism Act 2009 was the first (and still may be the only?) condition-specific legislation. The question’s are whether it has made a difference and if so, what difference, and what is needed next?

    Over the next week I will share my thoughts on some of the content of The Autism Act 2009 about changes I have seen professionally over the years since what I have shared above based on before the act was introduced through to now ten years on, as well as my personal experiences seeking an adult diagnosis and being an undiagnosed and then diagnosed adult and my experiences with adult education and employment.

    Most of what I talk about will be from my own perspective and experiences within the local authority that I live in. I don’t know if my experiences are reflective of experiences in other areas, so I would be interested to read in the comments of my posts over the next week what your experiences are compared to mine. I will also share ideas about what I think is needed going forward.

    In a very unscientific poll I did on Twitter 38% of people felt that things have improved since The Autism Act 2009, 50% said things have stayed the same and 12% said things have got worse.

    What are your thoughts on how the impact of The Autism Act 2009? Have you noticed a difference? Is there an improvement, have things stayed the same or got worse?

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