Like a lot of people my age and older I wasn’t diagnosed as a child or young person. I was in my late 30s and, again like a lot of others around my age, I had to figure it out for myself and it took some time. Here is how I came to that point – or some of the key events along the way at least.
A silly Internet quiz
I remember someone on an Internet forum back in the early 2000s started a thread with a link to the AQ50 a screening questionnaire for autism, asking other forum members to do the test and share their results. I remember doing the quiz and scoring highly. I don’t recall sharing my score or my view that it was just one of those silly internet quizzes, y’know the ones you do and they’ll tell you you’ve got all sorts wrong with you… Plus all those things it asks about are normal, right? Or they could be due to something else? I’m a little unusual yes but not *that* unusual. Surely most people would score highly on that test? Maybe everyone’s autistic. Not that I knew much about autism then. It seems not many people did.
Having said all that, I’ve long known that I have autistic traits. Maybe it was to do with stumbling across that quiz, which, whilst by no means perfect, is actually used by diagnosticians and not just “some silly Internet quiz”. More likely it was a combination of that and other things, but I have long been aware that I possessed some common qualities of autistic people. I didn’t think a whole heap about it over the years, it was at the back of my mind and occasionally something would bring it briefly to the forefront of my mind but life goes on. Surely if I was autistic someone would have told me!
Fast-forward to the early to mid 2010s and a bunch of things made the knowledge that I have a few autistic traits grow into the knowledge that I have a *lot* of autistic traits.
Several unconnected instances of friends and acquaintances talking about autistic people in their lives really stick in my memory because each time the (non autistic AFAIK) person was telling me about these supposedly strange and amusing things that the autistic people in their lives did or believed. In each case I think I was supposed to react in agreement with the person regaling the anecdote but every single time I was baffled by *their* bafflement at the autistic person they were describing. The supposedly odd thing was completely logical and sensible to me and in many cases something I did or believed myself. In pretty much every case it was basically “oh yeah this person has this funny thing they do and it’s because they’re autistic, how bizarre” and I was expected to agree.
So these instances mounted up and I filed them away in a little corner at the back of my brain and continued with life.
A job supporting autistic people
I worked for a few years as a learning support assistant (LSA) with adult learners, quite a few of whom were autistic. When I was supporting these learners it became very clear that I had many of the same difficulties as them. This was especially apparent in an entry level 3 English class.
For those unfamiliar with the various levels in adult literacy education here is a brief explanation: Level 2 is equivalent to a GSCE grades A-C. When the qualifications were introduced, level 1 was there to get people up to being ready to start level 2. However it quickly became apparent that many learners were way below level 1, so entry levels 1,2 and 3 were created in order to get people up to level 1. Many people find it is quite a leap from entry 3 to level 1. Basically, Entry 3 is very basic.
As well as working on their reading and writing, learners had to improve, and be tested on, their speaking and listening. This was really difficult to teach because, although the learners in the class were at a similar place to each other in terms of reading and writing, they had vastly different levels of proficiency in their speaking and listening. For many the speaking and listening tasks were basically incredibly patronising. There were some very intelligent and articulate individuals in the group, they’d just missed out on lots of school for whatever reason or gone through life with undiagnosed dyslexia: they could easily do level 2 speaking and listening already. I can easily do level 2 speaking and listening as well but when we were teaching some of the entry 3 stuff I realised that I actually struggle with a lot of the supposedly “basic” stuff. Things like joining in in a group conversation, interrupting politely, letting others speak, and staying on topic. These are all things that autistic people commonly have difficulty with.
Unsurprisingly, I found it quite challenging to support the autistic learners in this area where I was barely proficient myself. Fortunately I had the benefit of mostly working with excellent, well-organised teachers and having the opportunity to see the teaching materials beforehand. We taught the learners set phrases that I was able to easily memorise to use with them in the class. I fared less well when working alongside a less good tutor who failed to communicate her plans to me and expected me to somehow psychically “wing it” though!
An autism-unfriendly autism training
My fellow LSAs and I did our very best to support all the learners we worked with. It wasn’t always easy: two big difficulties were 1) some of the teaching staff had zero understanding of the barriers faced by some of the learners and the need to adjust their teaching accordingly 2) one of the qualifications we had to get people through was *so* autism-unfriendly. As a team we recognised that we could be supporting the autistic students better and asked for some training. I strongly suggested that teachers as well as LSAs should go on the training too since it is they that plan the lessons and many of them really were not planning or delivering inclusive classes.
Eventually some training was found. It was supposedly going to be very good. It wasn’t good. It consisted of sitting in a classroom watching a video stream of six hours of PowerPoint presentations of someone telling us about autism. I could dis the training for several paragraphs (but I will stick to just the two) but one good thing about it was it was another step in my realising that yeah, I am probably autistic.
My main problem with the training was that it spent ages talking about all the problems of autism, all the deficits, struggles, faults and difficulties: a plus of this was that it was basically describing many things I had trouble with when I was in education. The person mainly talked about the “problems” and any suggested helpful strategies were only really applicable to use with primary school children: there was very little, if anything, on how we could better support the autistic adult learners we worked with.
The other big problem with the training was that it assumed that an autistic person couldn’t possibly be watching it. Hello! There are autistic teachers, teaching assistants and learning support assistants! It was all very much “they do this”, “they think that”, “they are like this” and what an inconvenience this was… One thing the person said, which I thought was plainly obvious, but clearly not, was that teachers should avoid talking for too long and should be mindful of background noise: the woman prattled on for ages and there was an annoying noise in the background the *whole* time, thereby ignoring her own advice and proving what she thought of us – clearly we grow out of it after school and / or couldn’t possibly end up working in education.
Those hours of infuriating tedium did not help me or my colleagues better support any of our learners. One or two of the particularly clueless teachers may have learned something but I think they just reckoned it was a waste of time too. I suppose “every cloud has a silver lining” and it was another step towards my realising that I am autistic. The experience got filed away in the brain with the others and I continued with my job.
Random Facebook post
It was a random post from a Facebook friend that finally sent me off on a detective mission to uncover the mystery of my brain wiring. The post was written by someone who supports disabled students and was angry / upset about the fact she noticed a staff member laughing at / mocking an autistic student. I was angered by the injustice and joined in commenting on how terrible this was. A link to another quiz, the aspie quiz was posted and an autistic friend of the friend posted his result. In light of all the stuff mentioned above I did this quiz to see how I’d score. It told me in no uncertain terms “you are very likely neurodiverse (aspie)” It produced an image showing various people skills and intellectual skills and how neurodiverse or neurotypical I scored in each area. My image was extremely similar to that of the autistic friend – a shape not unlike a silhouette of Homer Simpson, FWIW.
I decided to investigate further. I did the AQ50 again and scored very highly, I did the RAADS-R (no, I hadn’t heard of it before either) and scored “above the threshold for suspected ASD”, way above the threshold.
Lots of reading
The results of the various online tests were clear and the experiences that had been filed away towards the back of my brain, but had now been dragged to the forefront, all sort of matched up. Nevertheless I was still very suspicious of diagnosing myself with a “disorder” based on a few online quizzes. More research was required.
It’s a well-known and common trait of autistic folks to get very interested (understatement!) in a particular topic and seek out all the information on it. This is what I set about doing.
Over a period of a couple of months I devoted many hours of each day to finding out more about autism. I read countless blogs and articles and numerous books on the subject: from autobiographies of autistic people to textbooks and the brilliant Neurotribes, a comprehensive and fascinating history of autism, by Steve Silberman. It’s a hefty tome (so get it on Kindle 😉 ) but well worth the read.
The more I read, the clearer it became. When I first set out looking into autism as a possibility I was kind of expecting to find that nope, autistic people are really, really different from me, so I’m not autistic – a few traits, sure, but not actually autistic. But it ended up going the other way: virtually everything I read made me more certain. It explained my entire life. There were a couple of autobiographies of autistic people that I didn’t particularly relate to, mainly I think because a lot of it was to do with parenthood and I am not a parent, and also because even though our brains are wired in a decidedly autistic way we are still quite a diverse bunch. The less relatable books were massively outweighed by all the other stuff.
Talking to people
I told my partner, who has known me almost half my life, that I reckoned I was autistic. The response: “I wouldn’t be surprised”. “It would explain a lot” I said. “Like what?” she asked. Shortly afterwards I produced a list of about 40 things that it would explain including a few arguably frivolous observations like “the fact that I wrote this out in a list for you rather than having a conversation about it”
Still mindful of the perils of diagnosing oneself with a “disorder” based on “Dr Google” (another topic I intend to write a blog post about one day) I asked her what she thought of it. Could I be autistic or was I just being a hypochondriac? She got a book from the library about autism and said it was like reading a manual for me. She agreed with the findings of my research and pointed out other typically autistic things about me or that I do that I was not even aware of! Incidentally, self diagnosis is regarded as completely valid amongst the autistic community – an official diagnosis can be prohibitively hard to come by for a multitude of reasons.
Signposted by a helpful autistic friend I joined a few Facebook groups where I met lots of other autistic adults, some I even subsequently met up with in real life. Talking to other autistic adults it is clear that our lives thus far had many commonalities: As young children many of us were precocious readers (hyperlexic), excelled academically yet always struggled socially, were labelled “lazy”, “disruptive” and “silly”. Teachers and parents had high hopes yet as soon as secondary school began we shattered their dreams by “not applying ourselves”. I most definitely was not alone in having been put up a year at primary school only to be held back before secondary due to not being socially ready, not alone in becoming an underachieving disappointment, “wasting” my intellectual abilities and alternating between unemployment and underemployment as an adult.
So that is (the edited highlights of) how I came to realise that I’m autistic. It took me a while! I sometimes wonder how life could have been a lot different (possibly simpler, possibly better, who knows?!) had I have known a few decades previously but that can be the subject of another post on the “blog posts I want to write” list.