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 a 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 reliable for these tests. The best I found was the AQ test from a Cambridge University team the Autism Research Centre:
It’s the Autism Spectrum Quotient – Adult test that I did which is on this page:
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 researched 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 on Tony Attwood’s website)
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 liked 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 because 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 their site.
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
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’.
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.
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 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 embarrassed. 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.