My Autism Journey

I received an adult diagnosis of autism spectrum disorder (ASD) a few years ago. I suspected I had autism for many years, but I didn’t want to be labelled, so never sought diagnosis until my life hit a point where I felt it was the only way I would get the help and support I needed.

Growing up I had always been different to others around me including my three brothers. My mum described me as a little scientist. As a child I was generally quiet, I tried to keep away from people, I would often do things alone rather than with others. My dad was concerned about me saying that he thought something was wrong with me, but found it difficult to put into words and be taken seriously about his concerns. He was concerned about many things including that I didn’t seem to know how to play, and I didn’t seem to be able to use reciprocal communication unless told to do so. Back in the 1980’s his concerns were dismissed. Mum said from birth I never liked being hugged, and would never hug back if I was cuddled, I didn’t have any issues walking away from mum to go into nursery school, even on my first day. She described how I walked straight in without looking back or acknowledging her, whereas my three brothers all got upset and distressed at leaving their mother on their first day of school.

Mum had tried to organise a birthday party for me when I was about 5 years old, but no-one attended. This apparently didn’t particularly bother me, but bothered mum.

I rarely felt a need to speak out, I kept myself to myself, so through school I was largely ignored. As long as everything was predictable and as I wanted, things went fine in school, but if anyone tried to do anything like giving me the bumps or jumping on me I would do whatever I had to do to make myself feel comfortable again. I didn’t care what extent of violence I would have to use, or who I would have to be violent to. If I was unable to escape the situation without violence I would do whatever I had to do to feel comfortable again. I was very stubborn, because I hate change I would refuse to do things when change occurred. This continued into my working life. When I started work I would walk out of the job if they made changes to my work situation. I wouldn’t think about the consequences of this, all I would be thinking is that I am not happy with the situation, so I need to leave the situation to feel comfortable again. I would be blunt with managers telling them when they are making stupid decisions, and telling them to shut up when they are not listening.

In my early twenties I started working in mental health, and then moved into working in children’s homes before moving into family support work where I was supporting those with autism and their parents and carers. Colleagues would often comment on how I was like the autistic people we supported, and as time went by I considered that I might be on the autistic spectrum. I never considered seeking a diagnosis because I didn’t like the idea of having a label, until workplace discrimination which I had faced in many jobs I had done, reached a point where I felt helpless and trapped, and I became depressed to the point where I wrote a date in my phone that I would kill myself because that seemed like the logical solution for resolving my situation. It was at this point I decided to seek diagnosis, feeling that it could lead to me getting the support I need to help improve my work situation. The diagnosis has been more beneficial for me than I could ever have imagined, it has helped others around me understand me better, it has helped me be more open about myself with others, and it has allowed me to help others through talks and writing my book Look Into My Eyes.

Look Into My Eyes: http://apn.to/prod/1542551196 (Link directs people to their local Amazon website. The book is also available from other retailers as an ebook (Kindle, iBookstore, Kobo, Nook, GooglePlay, etc) and paperback (retail paperback edition ISBN: 978-1326917340)

Miracle Mineral Solution (MMS) and Autism

It is horrific to think that there are people out there who think using Miracle Mineral Solution (MMS) is a good idea. I shared something about this on Twitter (https://twitter.com/AuthorDanJones/status/959198577611419650)

I struggle to comprehend how someone would conclude that this is a good thing and how they would decide to inflict this upon their child. Any parent using this to try to ‘cure’ their child will be committing child abuse which needs to be reported to the Police and Social Services as they are putting their child at immediate risk of harm. The parent needs help to be educated about autism and about what they can do to help their child with their child’s specific needs.

There is NO evidence that this works to help autistic children, there is NO cure for autism, autistic people are born autistic, you don’t cure how someone was born.

I think social media allows the idea of various false cures to spread and if a ‘cure’ sounds like an easier solution to the real answer then some people jump on it, and the way some people think is that the more ‘the establishment’ are trying to say don’t do it, the more they distrust that and believe they are lying and they want to use the cure. I think there is a very worrying anti-science trend where people seem to have left logic at the door and decided that opinions and personal beliefs count more than objective questioning, rigorous research and peer review. This doesn’t just go for autism, but also for health and nutrition with all of the claims of detoxing and intolerances, etc, with therapy with claims of homeopathy and various other alternative health treatments, and in science with claims as ridiculous as the Earth being flat and human caused climate change not being real.

Dan Jones is author of autism books including ‘Look Into My Eyes‘ and ‘Asperger’s Syndrome: Tips & Strategies‘ and has over 20 years professional experience as well as being autistic.

What Causes Autism?

The causes of autism aren’t fully known. There is variety in those with autism, from high-functioning, to low-functioning. As it is something people are born with it is clearly genetic, but how it expresses differently is currently unknown. It could be that genes associated with autism are expressed differently in the presence of other genes, or it could be they are expressed differently in the presence of certain levels of certain hormones during birth, and some of the differences in how it is expressed could be environmental, like how the child is raised. It is likely to be a mixture of all of these elements. One question is why does autism continue to persist? This may be because it has benefits for society when someone is on the high-functioning end of the spectrum. Someone with high-functioning autism is likely to be very good at focusing on one task and obsessing about that one task and that one subject, so they manage to achieve things others don’t have the time, focus or patience to achieve, like maybe becoming obsessed with how arrows travel through the air, and wanting to know why an arrow travels as it does, and what would make it travel further and more accurately. Someone with high-functioning autism may focus on this thought for years until they develop an arrow which is more efficient and better than other tribes arrows, which helps the tribe survive and gives the autistic person an advantage to the tribe. It could be that the downside is some people are born with low-functioning autism which means they require more care, but may not contribute to the tribe. This is a similar argument to one I remember learning about schizophrenia when I worked in mental health homes. That schizophrenia is genetic, and at it’s worst (and without medication etc) it isn’t particularly helpful, but for some people before it develops into schizophrenia they have incredible creativity and connections of thought which others generally don’t have. With schizophrenia it is something which some people have a pre-disposition for it, and often a life event or situation triggers the schizophrenia, this could be puberty or a traumatic or stressful experience etc., it is something the person has the genes for, but to turn on the epigenetic expression for the person to have schizophrenia usually takes a trigger.

There are questions about why more people have autism nowadays. The currently thought reason for this is that there aren’t more people with autism, just less stigma, so more people are comfortable seeking diagnosis, and better ability to diagnose autism. There are also more females being diagnosed with autism than their used to be. It used to be thought that autism was more of a male issue, and it may have a slightly more male bias – although with time it may turn out this is incorrect, but now it is recognised that females and males can have autism, it is just expressed differently in females to males. For example I think females may find emotional sensory overload more of an issue than males, but this isn’t so easily picked up because people seem to think those with autism don’t have feelings and don’t get emotional, so in the past if a female was getting emotionally overwhelmed psychologists and psychiatrists are likely to assume the problem is something else, not autism.

Living with Autism: Workplace Discrimination

In this video about my experiences with autism spectrum disorder I share about discrimination I have faced at work due to thinking and behaving differently and how this ultimately led to me seeking autism spectrum disorder diagnosis to enable me to get occupational health support and to be treated fairly.

Living with Autism: Birthday Party for One

In this video about my experiences growing up and living with autism spectrum disorder I share about the first birthday party my mum arranged for me (and the first party she had arranged for any of her children – it was to celebrate my 5th birthday) and how it went – hint… no-one turned up… 😦

Living with Autism: Being a Hug Free Baby

In this video about my experiences growing up and living with autism spectrum disorder I talk about how I never used to hug as a baby and how as I grew up I would hug occasionally if I was asked to do so for a photo, but always felt uncomfortable with it, and what my experiences have been since then into adulthood.

Living with Autism: Fighting Low Expectations

In this video I talk about my experiences as a professional who works therapeutically with families as well as my own personal experiences of fighting low expectations. People with high-functioning autism or Asperger’s syndrome are often very capable they just need the right guidance and opportunities to learn skills which don’t come naturally and instinctively.

 

My Journey to Autism Diagnosis

I don’t know if anyone will be interested in this video, but I really wanted to make it.

I have been ‘quirky’, or ‘weird’ all my life. At times I have felt discriminated against, but have felt powerless to do anything about it. Eventually I decided to have an ASD (Autistic Spectrum Disorder) Assessment to see if I have high functioning autism, or Asperger’s. I felt this seemed like it would fit my experience of the World.

The assessment process of spending many hours looking at myself now and over the years since childhood was informative and revealing, giving me many ‘aha’ moments where I started linking things together about myself in ways I hadn’t before.

I knew something of Asperger’s because I have been working with children/teenagers and families for about 15 years, and have had limited training and read a few books on the subject, but in the questionnaires I filled in there were things I had never thought of as being associated with Asperger’s that I was able to relate to now and as a small child.

Generally I’m not a fan of people being labelled because so many people blame their label and absolve themselves of any responsibility, and I have seen parents do this with their children. But if someone is seeking a label or ’cause’ for a good reason then I think it can be really helpful.

For me, I felt that finally knowing once and for all, one way or the other whether I have something like high functioning autism or have something else, or whether I have nothing, and instead I am just weird. I reached a point in my life where I felt strongly I needed to know, and wanted to know. I wanted to understand me, who I am and why I think so differently to others. I wanted to be able to help others understand me and help them to know how they can help me, rather than having them think I am just trying to be awkward, or dictating things because ‘I want my own way’ when in fact all I want is a quiet space, or all I want is to get out of where it is busy because it is becoming overwhelming and I am about to get angry and will probably be very blunt and abrupt with people in my attempt to cope, or I am not being a bad friend by not getting in touch, it just doesn’t cross my mind to get in touch, or I’m not telephoning because I’m lazy, I just don’t like making phone calls because I don’t know what is going to happen or how it is going to go so I have to spend weeks thinking through the phone call and as many scenarios as possible before making the call or answering the call…and I could go on…

Luckily for me my life took a change of route when I discovered hypnosis. Hypnosis is all about communication skills, so developing an obsession with communication skills has allowed me to learn how to communicate with people, albeit artificially, although I am doing more unconsciously all the time.

I still find myself in situations where I don’t know what the right response is, and stupid things make me get anxious/angry and snappy and all I want to do is escape, whereas big things generally are predictable in how I should respond, so I find these easier to deal with (I am more comfortable having someone threatening to kill me, than I am asking a waiter for the bill).

Despite challenges and difficulties I have had I have still achieve a lot over the years from being part of a TV programme about fear, to writing about a dozen books, and working as a psychological therapist. I wanted to make this video to share something of my past, and something of what has helped me cope with my different perspective on reality, and the positives of seeking diagnosis whatever age you are.