Adult Autism Diagnosis

Notes on my experience with getting a diagnosis of autism in adulthood

This is a brief description of the process I went through in getting an adult diagnosis of autism through the NHS in England.  I’m writing it because I sometimes come across fellow travellers on this path through my blog and just as other people who’ve already been this way helped me – I want to help as well.

I am very lucky to live in an area of the country where an adult autism diagnostic team has been set up and is very well run and supported.

I first really faced the fact that I might have autism when I friend of mine, who’s son is autistic asked me, quite gently, while we were talking about her son, if I realised that I do all of the things that he does.  I could see what she meant.  So I went home and did some online tests.  I looked for somewhere realiable for these tests.  The best I found was the AQ test from a Cambridge University team the Autism Reserach Centre:

It’s the Autism Spectrum Quotient – Adult test that I did which is on this page:

http://www.autismresearchcentre.com/arc_tests

There is also a key I downloaded afterwards to see what the test showed me.  However, to be clear, this test doesn’t actually diagnose a person.  So I then went to my GP and told her what my friend had said and what had happened on the test.

She gave me another test and because I scored high on that one too she then applied for funding for me to be formally assessed.

It took several months for the funding to come through and the diagnosis process to begin but the Diagnostic service were brilliant.  All of their letters were really clear – the clearest and most easy to understand communications I’ve ever had from an official medical / legal / governmental department.  This massively reduced the stress I experienced because I understood what was going to happen and how.

While I was waiting for all of this to happen I reasearched adult autism myself – mainly in books.  The best of these was

The Complete Guide to Asperger’s Syndrome by Tony Attwood  (Click picture below to go to the page about this book opn Tony Attwood’s website)

complete-guide

When I was reading this and other books there were many many many times when I could relate my experiences with things that were being written about in the books.  So I started to make notes. This was an important process for me as it showed me more and more clearly that autism was a perfect description of the differences I found in myself compared to others.  I could take this at any speed I like which was good because sometimes it left me feeling angry, sometimes, I felt like a person who was broken and constantly I felt this sense of things in my life which had confused me for years falling into place and making a pattern I could finally understand.  I am really glad that there was a delay while I had to get funding and wait for the process to begin becuase it gave me the space to work through a lot of things which I needed to understand and come to terms with.

I ended up with enough notes to write quite a large book. I decided that I wanted to pass some of this information on to the people who were going to be looking at me with a view to potential diagnosis but I knew that I couldn’t send them hundreds of pages (I have previously done things like that I been given feedback that it is not helpful or appropriate).  I wanted some more order and structure to my notes and to shorten them so that someone might read them. So I looked up a good description of autism on the web – ‘The National Autistic Society (a UK charity for Autistic people and those who love, care for and work with them) – have a really good description on this page:

http://www.autism.org.uk/about-autism/introduction/what-is-autism.aspx

Then I sorted all my information into the categories of this description.  Often I had many many examples for each section, so quite often I would try to aim for at least one good example from my past and a good example from my present situation for each section.

Here is the description which I used (in purple below):


Autism is characterised by three main areas of difficulty and if you have autism, you’ll be affected in some way in each of these areas. However, everyone with autism is different and no one person will have all of the traits listed below. Try to give your GP one good example from each of the three main areas of difficulty.

The three main areas of difficulty

Social communication

People with autism sometimes find it difficult to express themselves emotionally and socially. To give some examples, you may:

  • have difficulty understanding other people’s gestures, facial expressions or tone of voice
  • talk or read very fluently but not fully understand the meaning of some of the more complex words and phrases you use
  • be very literal and sometimes struggle with jokes, metaphors, sarcasm or common turns of phrase, such as ‘She nearly bit my head off’.

Social interaction

Plenty of people with autism want to be sociable and make friends, but often say they’re unsure how to go about this. Socialising can be difficult and may cause considerable anxiety. To give some examples, you may:

  • find it hard to make and maintain friendships
  • find other people unpredictable or confusing
  • not always understand the unwritten ‘social rules’ that other people just seem to know. How close do you stand to another person? How do you know what’s an appropriate topic of conversation?
  • be unsure how to behave in different social situations, and worry about getting things wrong.

Social imagination

People with autism have difficulty with social imagination. To give some examples, you may:

  • find it hard to understand or interpret other people’s thoughts, feelings or actions – and therefore to understand their intentions or to predict what they’re going to do next
  • not always be comfortable with the idea of change, and prefer to stick to a routine
  • enjoy carrying out particular activities, or learning about certain topics, which as well as being enjoyable you may find really beneficial. Perhaps they help you to relax, or to deal with anxiety.

Many people with autism are imaginative (for example, they are accomplished writers, artists and musicians). If you’re quite creative, this shouldn’t automatically be taken as a sign that you do not have autism.

Related characteristics and conditions

As well as the three main areas of difficulty, you may find you have some of the following characteristics or conditions, which are quite common in people with autism. You should tell your GP about these, too.

Sensory difficulties

Sensory difficulties can affect all seven senses: sight, sound, smell, touch, taste, balance (‘vestibular’) and body awareness (‘proprioception’).

You might find that you are either over-sensitive or under-sensitive to different stimuli. For example, you might be averse to bright lights, loud noises, some smells, particular food textures or the feeling of certain materials. Any of these could cause anxiety, possibly even pain.

You may also find it harder to use your balance and body awareness systems, which let us know how we’re moving and where our bodies are in space. So you might find it harder to navigate rooms avoiding obstructions, or go up and down stairs. You might also find that repetitive activities such as rocking, hand-flapping and spinning (which many people with autism do) help your balance and posture.

Love of routines

In an effort to make the world less confusing, you may have rules and rituals (ways of doing things) that you insist upon. You might also have a strong preference for routine, and find it difficult to cope with change if you haven’t been able to prepare for it in advance. For example, an unexpected delay to your journey to or from work might make you feel anxious or upset.


The actual diagnostic process consisted of a lot of written tests for me to do, a lot of tests for people who know me to do (friends and family), a day for me with two clinicians communicating and observing me and direct communication between the people who know me (friends and family) and the clinicians.

Afterwards they wrote a really very helpful report explaining how I fitted the criteria for being on the Autistic Spectrum including, really helpfully, areas I struggled with and areas where I had some good strengths.

After I was diagnosed I felt quite low for a while as I accepted that the fact of me being a bit ‘out of step’ with others and socially unusual – which is something I had previously spent my life fighting to hide and overcome.  But as this new knowledge became more everyday for me I began to see how it helped enormously to know myself better.  I found I was able to manage important and difficult areas of my life much better.  I could forgive myself when I was doing things which were difficult for me, which helped me get out there and practice more rather than hiding away because of the fear of making horrendous social errors.  I found I could use my really strong logical brain to help myself through difficulties and I could help others when things got difficult by explaining to them about the autism.  I was then really happily surprised at how often someone who was previously shouting at me would become my ally in helping me understand.  It was hard at first to explain that I have autism because I felt embrassed.  In fact I still feel that a bit –  there are still some important people in my life I’ve not had the courage to tell yet, but I know I’ll get there in the end.

Now I am certain that getting a diagnosis has been massively helpful to me.  It’s like Luke Skywalker meeting Obi-Wan Kenobi and and beginning to understand about the Force.  I just couldn’t be myself in the world without it.

Obi-wan_and_Luke

19 thoughts on “Adult Autism Diagnosis

  1. 13th July 2017

    Dear Jo,

    We are so glad to hear that you seem to have lots of help.
    That is very good to hear.

    Yes, our daughter is a very special person who is working in a very difficult situation where it seems that administration is more important than providing the service!

    I had not heard that Charles Darwin is thought to have had Asberger’s.
    I must look into that and see what comes up.

    I think he began reading Medicine at Edinburgh, but changed to reading Geology at Canbridge.
    It was this knowledge which was so important in the development of his theory.
    He was able to estimate the age of the fossils he found and could therefore build a timeline and compare the realtive deveopment of related species.

    It is always nice to think, that if I were a much older person, I could have been at school with him!

    Keep safe and well,

    Best wishes,

    Dai.

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  2. Hi Dai,
    Thank-you so much for your kind offer but I’m very lucky in that I have lots of support from friends at Chapel and family near by. I also belong to an Autism support group which is really good too. Your daughter sounds like a very special person, she’s really welcome to read my blog but I am doing fine support-wise at the moment.
    I am amazed that your artist taught Charles Darwin – that is incredible – what a treasure! In an interesting twist there are some reasons to think that Darwin himself may have had Aspergers in fact.

    Thanks again for your kind note,
    Jo

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  3. 12th july 2017

    Dear Jo,

    Thank you very much for looking at Philip Vandyck Browne’s Llanberis. I always get a strange feeling when I think that he was the person who taught Charles Darwin to draw. It is a similar sense to the one I get when finding and handling fossils.

    Our daughter is a specialist nurse, specialising in autism. She usually works with diagnosing young people. I wonder if you would find it helpful to have a contact with her.

    She is very busy all the time. The resources are always overstretched, but please tell me if you would like to have the contact and I will ask her.

    In the meantime, I will refer her to your site to read.

    Keep safe and well,

    Best wishes,

    Dai.

    Liked by 1 person

  4. Hi, I’m sorry, I don’t know what this is about or whether I want to participate. I’ve had a look at you WordPress site but I’m still not sure I understand it’s purpose. Could you perhaps explain? I would appreciate knowing more. Also, do you give blog owners the choice to decline being listed? Many thanks, Jo

    Liked by 1 person

  5. Your blog will soon be added to our Actually Autistic Blogs List (anautismobserver.wordpress.com). Please click on the “How do you want your blog listed?” link at the top of that site to personalize your blog’s description.
    Thank you.
    Judy (An Autism Observer)

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  6. Thank you so much for your generous comment and encouragement! I really look forward to seeing more of your work as you rediscover the artist in you. Thanks again, Jo

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  7. I found what you wrote very enlightening and explained where you are at very well. You explain things very clearly.
    You have a LARGE body of art work to peruse and I am working myself through you’re blog. Honestly, I am blown away by some of it.
    I am just starting out discovering art again and seem to be going in too many directions all at once….(sometimes at 100 mph)…..but I am really enjoying it and that is the main thing.
    Thank you very much for sharing ….. I think you will inspire me with some of your projects.
    Cheers….Bart.

    Liked by 1 person

  8. Thanks for the comment. My son’s Maths teacher has a great saying which I really love. She says “Normal scares me”. I love it because it gives solidarity to everyone who’s realised that normal is really a myth. Thanks again, Jo 🙂

    Liked by 1 person

  9. Self-knowledge can be a bit elusive for most folk, so I hope you continue along that path and that you find a way to share with others. In an odd way, the burden of fault also lies with all the so-called “normal” people who can’t make exceptions from their own life expectations to accommodate those who might be a little different. Sort of, in a sense, assuming that we should all behave alike. I’ve always thought that there really is no such thing as “normal”, so we really all need to look at each other as individuals. I have no idea how autism might affect your artwork, but I did enjoy reading several posts illustrating how you go about it. Keep in mind that even the “masters” didn’t realize they had made a masterpiece in their own time. That title is usually reserved to be bestowed upon your work after you’re dead! (yes, that’s a joke…) Anyhow, carry on and enjoy the journey!

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