This post about how to get an autism diagnosis in the UK (as an adult or for your child/teen) is written based on information taken from my autism book Asperger’s Syndrome: Tips and Strategies which shares tips and strategies for parents, carers, teachers, employers, friends and autistic individuals. Please share this with anyone who you feel may find it interesting or helpful, it is important information to know. 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. I apologise upfront for the length of this post, it is more important to me to give you all the information I think is helpful around this topic, than to cut it short and not share information of importance.
Before seeking 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 your 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:
1. Stereotypied or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
2. 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 food every day).
3. 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).
4. 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 comorbid 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, other may be louder and more externally focused. This can led 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 example 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, and sometimes parents can feel they are being treated as though they have been 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 when they contacted parents upon receipt of a letter asking for an assessment, 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 in to 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.
Apologies again, I know this has been a long post, but it was important for me to write everything I wanted to convey and to try to be as helpful as I can, rather than keeping it to an arbitrary length and then miss information I feel is useful to know.