What to expect during your adult autism assessment
This article was written in 2017.
It’s very hard to generalise about what to expect during your adult autism assessment, as each country and health authority has different procedures; however, I can explain my procedure here in the UK when I was diagnosed in my 40s, following an increase in my own knowledge-base about autism. (Read more about me HERE).
Following a familial link to autism, I started to recognise that I was probably on the spectrum myself. My doctor referred me after an initial consultation (possibly the fact I created a spreadsheet of colour-coded traits gave it away?!) and it took about six months for the appointment in my region of the UK to come through.
Assessments in my region are currently (at the time of writing in 2017) carried out by an independent organisation describing themselves as a ‘neurodevelopmental assessment and support service’ contracted to supply autism assessments for anyone over the age of eight years old; pleasingly, this third-party organisation replaced the ‘autism-team’ at my local authority, which seemed to consist of one part-timed lady called Brenda who was never in the office. I knew roughly when to expect the assessment and had called previously to check the time-scales, e.g. the aforementioned six months wait-time.
The environment was very relaxed and laid-back, and the office was staffed by very casual and friendly looking people. I arrived and initially saw an assistant clinical psychologist, followed by the clinical psychologist himself, and the whole process took about three hours.
I was fairly nonchalant, cool, calm and collected, and frightfully well informed about the whole thing; at least that is how I perceived it. When the report came back however it appeared that I was in fact very anxious-looking, displaying several autistic signs, e.g. mis-matching hand-and-vocalisation gestures, and not giving enough spontaneous speech, leaving the clinician in no doubt about my autisticness! However, and this is important I feel, he did note my GOOD eye contact, stating: “Throughout the assessment, she did use eye contact in a way to initiate, terminate or regulate social interaction, and her eye contact was reasonably well-modulated.” (It is frustrating when clinicians use the myth that ‘autistic people don’t make eye contact’ as a way of ascertaining a person is NOT autistic, e.g. if the autistic person DOES make eye contact. In my opinion our ability to hold eye contact is (a) learned, and (b) depends on how we’re feeling overall; e.g. we may reduce eye-contact when approaching shutdown.)
The clinician discussed my history and development, family, relationships, education etc and used both the Autism Diagnostic Observations Schedule 2nd Edition (ADOS-2), and the Diagnostic Interview of Social and Communication Disorders (DISCO) for the assessment. He was calm and kind and informal throughout and very patient when I became teary, which I did when discussing a family member, and also some other personal matters.
I left the office feeling a mixture of elation and relief and a jumble of other things, and left the office profusely thanking the psychologist. He may as well have handed me an envelope with big red writing saying “Autism – your new special-interest”, as at least that’s how it has been for me; literally every day since I started learning about autistic spectrum conditions and the familial links in our family, I devour information and studies and articles in an effort to become more well informed.
How do friends and family react?
I’m not sure how it is for everyone, but my initial belief that I may be autistic and then my diagnosis was widely met with what I deem to be a kind of ambivalence by those around me. Which is great really, in that people who like or love me do so whether or not I have an autism diagnosis, or an Aspie badge. I imagine it would be similar to a family member ‘coming out’ for the first time to me, and telling me they were gay; it wouldn’t be a big deal to me, and I wouldn’t ask them about it each time I saw them – why would I?!
Someone will of course ask you how it feels to be given the diagnosis (in my case, high functioning autism with an Asperger’s-type profile – although clinicians don’t use the term ‘Asperger’s’, these days); and you say things like: “Well it’s a relief really, it’s good to be told what I already knew, and I always felt different, and now I know why, etc etc.”
The first few weeks post-autism-diagnosis are spent getting used to the new label, telling certain people when the time is right, and having 1-million lightbulb moments of realisation about your past, your present and your future.
You have an autism diagnosis – but who are you?
As time goes on you may well start to question who the real you is; if you’re autistic and you made it to adulthood without you or your friends or family knowing about your neurology, you have undoubtedly been masking your struggles, in particular within the social sphere; this may lead you to then question who is the real you. If you’re within the workforce, your workmates probably know that you’re quirky, but do you have to put on a (probably unconscious) mask to carry out your job? Do you continually seek acceptance, being the natural people pleaser that you are, and in order to nail this social communication thing, do you sometimes use alcohol to help shape your social personality? And if you’re a lively social butterfly, is your social personality or persona the real you, or is there a more quiet and passive person underneath, who enjoys time at home with a book and pyjamas and quiet-time? There are so many more questions!
If you take some time to ask and answer the questions in that busy old brain of yours, you will start to find some answers and how long the process (of finding them!) lasts is anyone’s guess; my clinical psychologist told me that some people don’t want to accept their adult autism diagnosis, but that most people on the whole are relieved and positive. It is worth remembering that some of the more high-profile autistic people (and I’m thinking specifically of broadcaster Chris Packham, footballer Lionel Messi and actor Anthony Hopkins) did not shout their diagnosis from the rooftops initially, and presumably spent time coming to terms with it and finding themselves before sharing their autistic-selves with other people; this is probably a fine idea, but either way the autism community is grateful for their honesty.
A little disclaimer – here at Spectra.blog we don’t claim to be experts about Autism; the information we post here is based purely on our own exposure and experiences. Our own book ‘Autism from A to Z’ is now widely available – purchase here.
It’s a cliché perhaps, but many people with autism love music, for many reasons. What better way to deal with life than to escape within a beautiful song? As Bruno Mars says: “There’s not a thing that I would change, ‘Cause you’re amazing just the way you are…”
Also published on Medium.