More and more adults are coming to realise that they’re on the autism spectrum. Sometimes the possibility of autism is suggested to them by a friend, sometimes a family member, and sometimes the realisation comes after they learn that their child is on the spectrum.
Reactions can vary, of course. My own reaction, aged 24, was relief mixed with misery (which is odd, given that by 29 people across the internet were telling me how positive I was when talking about autism). If you’re reading this having just learned that you might be autistic, I’d suggest that you read this article – I just found out I’m autistic. What do I do now? – before this one. [All links open in new windows so it won’t interrupt your reading.]
Sooner or later, I had to make a decision about whether to chase a diagnosis. Clearly this is a topic that’s relevant to a lot of people: I held a poll on what my next article should be about, and this one won both the preliminary vote in Autistic Not Weird’s Facebook communityand the final vote among my Patreon supporters.
So here we go – these are what I believe are the most important lessons I learned along the diagnosis chase. It comes with a quick disclaimer that I’m British, so the diagnostic process may be different where you are. But as far as I’m aware, there are similarities in most countries.
My personal diagnosis journey, with tips I learned along the way
This was me on 28th November 2009, the day before I found out I was autistic.
There’s a reason I look happy in this picture. And it’s not because I was happy with how life was going.
My teaching course was going wrong, sabotaged by a placement school who decided after literally one day that they didn’t like me. My mental health was taking heavy punishment, which unemployment after graduation would not help. This photo was taken on the night I thought “screw it, things are going so bad that I’m going to have a drunken night out with my coursemates and not care what my liver says in the morning. Because hey, I’ve got until tomorrow evening to recover and see Mum on her birthday.”
Yeah, it could have been the start of a more destructive lifestyle than it actually was. In a way, I got off light.
This was on the back of many years of believing myself to be socially inept, intellectually brilliant but otherwise incompetent, and the kind of person who was just ‘supposed’ to have an inferiority complex and struggle to understand people. Especially those who would get offended at me for seemingly no reason (I certainly never did anything deliberate to offend them).
So there was a lot going on before the autism revelation came along. But even though my diagnosis of Asperger Syndrome came less than a year after my first appointment, three and a half years passed between this photo and me seeing a therapist about my depression/anxiety.
Learning point #1: if you’ve learned that you’re autistic, you’re already at an advantage. Maybe the news was a relief, maybe it stung a bit, maybe both. But you’re better-placed to know yourself, your strengths and weaknesses, and you can learn how to address them.
The next day, I got my hungover self on the train and saw my mum for her birthday. At some point during the evening, my sister told me I was probably autistic. It made sense to me, and put into context a lot of the things that had confused me for my whole life. Even though it was tricky news, ultimately I was far better off because I knew.
But I didn’t chase a diagnosis at first. There was still a fighting chance I’d qualify as a teacher, and I didn’t know if an autism diagnosis would be a death sentence for my career (I knew it was illegal to forbid autistic people from becoming teachers, but I was nervous about the prospect of declaring it on job application forms.)
In the end, I needn’t have worried. The most autism-related question on the job application form was “do you consider yourself to be disabled?” and I could honestly tick “no”, because I didn’t. In my mind, ticking “yes” would be an insult to the students I’d worked with who had severe learning difficulties (although future experience taught me that verbal people without learning difficulties can also be disabled by autism).
Once the job worry was out of the way, my mind was open to a big bunch of reasons to look for a diagnosis, including:
1) Just to know. To be 100% sure rather than just 99% sure.
2) For validation: to know that my ineptness and incompetence wasn’t “my fault”.
3) To avoid conversations with people who refuse to accept self-diagnosis (e.g. “oh, so you don’t know you’re autistic, you just think you are!”)
Learning point #2: know why you’re chasing a diagnosis. Have whatever reasons you want, but know what they are.
So off I went, on my journey to have my near-certain Asperger Syndrome recognised professionally. I was a little clueless about where to begin, but I was pretty sure it started by asking my local GP (General Practitioner, basically a “family doctor” in Britain).
I made the mistake of seeing the doctor about something completely different, and then throwing in a discussion about autism at the end. So in my ten-minute appointment, I spent eight minutes talking about a cyst, and two minutes talking about possibly having a neurological condition and needing answers.
Learning point #3: don’t ask as a “by the way”. Make the appointment specifically about asking for a referral.
Unsurprisingly, my rushed question got a rushed answer. It was along the lines of “I wouldn’t bother really. Services for adults are near non-existent, coming from my professional experience.”
In mid-2010 I saw a different GP and talked specifically about Asperger Syndrome. He immediately wrote me a referral to my local mental health team. (The referral will be to mental health services, by the way, even though autism isn’t a mental health issue. They deal with neurological conditions too. Since it all happens in the same organ, I guess.)
I’m aware of how fortunate I was to get a referral on the first meaningful try. These days I talk to followers who have (in their words) been laughed out of the doctor’s office because “you made eye contact with me a couple of times” or “autism doesn’t affect women” or uninformed reasons based on outdated misunderstandings.
Learning point #4: if the first doctor you find says no, find another. Not every doctor gets it right on first impressions, and sometimes referrals even depend on doctors’ personal views.
So how do you maximise your chances of getting a referral (bearing in mind the doctor’s preconceptions about autism are beyond your control)?
Well, I thought about how to express myself fluently at the appointment. Given how anxious I felt about having a discussion about it, I was fairly certain I could predict what would happen. It would be like most other conversations I had with people more important than me: I’d start making an important point, get anxious and freeze up, and then the other person would jump in (or just outright interrupt) and make their own point to substitute mine.
Basically, I was pretty sure the doctor would prematurely decide whether I was autistic the moment I choked on my own words.
So I treated the appointment like an exam, and made a load of notes. Except – unlike most exams – I could take the notes in with me.
I made a list of all the symptoms of autism/Asperger Syndrome that I felt I matched, and wrote personalised, real-life examples beneath each point.
When the appointment came, I used the notes as a guide. I can’t remember whether I got to talk about every single point, but either way it worked: I got the referral I needed and deserved.
Learning point #5: don’t be afraid to bring a list of notes. The doctor won’t (or can’t) stop you, and it may help you express yourself.
(Also, there’s a case for saying that making notes in order to aid a conversation is a pretty autistic thing to do!)
It was several months before I got my appointment with the psychiatrist. Oh yeah, I should probably get that learning point in too:
Learning point #6: be prepared to wait. A long time. A lot of other people are realising they’re autistic, or getting help for mental health issues. Basically, the professionals are bloody busy.
By autumn 2010, I’d graduated from my teaching course and leapt headfirst into the world of unemployment. (Job interviews do seem to have been designed with “everyone else” in mind. So I’d convince countless interview panels that my heart was in it, I’d work extremely hard and I’d build up children’s confidence etc… only to be beaten by a candidate who would just sit down and give The Correct Answers.)
My mental health was holding on, but my opinion about myself was pretty low. So it was vitally important that I got a professional who understood me as a person.
Sadly, that’s not who I got.
The psychiatrist I got was a friendly young man, and clearly very intelligent. He spoke four languages, of which English was not his first. Nor, I suspect, his second.
(Important point before I continue: after I left teaching, up until my Patreon supporters allowed me to write for Autistic Not Weird for a living, I worked for the NHS. I may have had a low-paid part-time filing job, which only just gave me more expertise than our Health Secretary, but I know first-hand that without migrant doctors and nurses our NHS would collapse. Immigrants make up 26% of our doctors, and we should be honoured that our health service attracts worldwide talent.)
The truth is, I don’t care whether my doctor comes from Sudan or Southampton as long as he can meet my needs as a patient.
But when I’m literally correcting my doctor’s notes as he’s making them, I do get the feeling those needs are being dangerously unmet.
But ignoring the communication problems, his methods weren’t that great either. Basically he got me to do an online autism test, then told me I wasn’t severely autistic. (Wow, thanks for that insight.) There were clearly some enormous gaps in his knowledge, despite his obvious level of intelligence.
Within a few months, this junior psychiatrist had moved on to another place. I dearly hope he’s become more well-informed since.
Learning point #7: professionals aren’t always autism experts. Some are well-versed with plenty of personal experience, and some are relying on what they read in an outdated textbook some years ago. (And again, some are swayed by their own personal opinions.)
As you can imagine, I was pretty horrified at being told that my knowledge about myself was wrong, by a professional who held the rubber stamp in his hand whilst being clearly clueless about autism.
So I answered back. I can’t remember my exact words (and they were fairly out of character for the unconfident, sheepish person I was at the time), but I basically told him I already knew I was autistic, and thought that going for a diagnosis would be just a formality. Clearly I made my case strongly enough because this junior doctor, like a fast food employee asking “do you want me to get the manager?”, suddenly referred me to a consultant psychiatrist who knew better than he did.
I left the appointment frustrated, knowing that a crucial opportunity had been missed, but grateful that I’d at least won a retrial.
Some years later, I found out that one of my friends (a very clear case of Asperger’s – perhaps even more obvious than me) had also gone for a diagnosis somewhere, was told “no” by a professional and then stopped trying. After all, if a professional has that opinion, who are we to question it?
I can only imagine what his understanding of himself would be right now, if only he’d known that professionals disagree with each other, and that some are more well-informed than others. (It’s staggering, the number of parents I talk to who have to keep correcting the people who assess their child.)
My friend didn’t take it any further. I did.
And that’s why I have a diagnosis.
Learning point #8: fight your corner. Especially if a doctor’s personal opinions, uninformedness or budget issues are encouraging them to say no. (I seriously think many are told “no” just to weed out those willing to fight from those who aren’t.)
The final showdown took place on 11th January 2011. (Well, it was a fairly relaxed appointment, but it didn’t feel that way until long after I walked into the room.)
I went inside, big sheet of notes prepared as usual, only to be told halfway through: “I’m diagnosing you right now. 99% of psychiatrists would be able to see your Asperger’s right away.”
I walked out of the building feeling validated. A weight had gone from my shoulders: not only did I know why my brain worked the way it did, but I had professional backing for my life experience. It was the first step to making peace with the person I was.
Did I get immediate, meaningful further services? Ha, no.
In March 2011 I got a letter saying I’d been referred to my county’s Asperger’s support team.
In June 2011 I got a letter to say “don’t worry, we haven’t forgotten you”.
In May 2016 I got a letter inviting me to my first appointment. (I must add though, I was told the delay was a massive error on their part and not typical of adult services. In fact, I was encouraged to complain.)
They couldn’t possibly have known that, of course. In those five years I could have killed myself for all they knew.
If I’d chased my diagnosis with services in mind, I’d have been disappointed. But thankfully, the peace of mind was enough. The diagnosis was confirmation that my weaknesses were down to neurology, and not me being utterly useless. It helped me to understand my strengths and my weaknesses, putting me in a better position to work on both.
More than anything else, it made me realise that my years of changing myself to be like other people had harmed me rather than helped. I wasn’t ‘recovering’ from being deficient: I was damaging the person I actually was.
Long story short, my diagnosis gave me permission to be myself.
Learning point #9: maybe you’ll get extra services, maybe you won’t. But a diagnosis can benefit you in other ways too.
Back in 2011, I used to say “some days I wake up and thank the Lord for giving me Asperger’s. Some days I wake up and ask what the hell he was playing at.”
The truth is, it took a long while for me to make peace with myself, even post-diagnosis. But I got there, and the diagnosis helped.
Seven years on, I still celebrate January 11th as my Aspie-versary: the day me and Asperger Syndrome tied the knot in a psychiatrist’s office, and have lived happily together (well, mostly) ever since.
So, in summary:
In the beginning, just knowing about your autism is progress.
Know your own reasons for chasing a diagnosis.
Make your initial appointment specifically about getting a referral- don’t tack it on to something else.
Bring a list of notes in case you get anxious and forget/can’t express something.
If the first GP says no, find a better one.
Be prepared to spend a long time waiting.
Professionals aren’t always autism experts. Again- if one says no, find a better one.
Fight your corner if the answer is no.
There are other ways a diagnosis can help you. Not just services.
Underdogs, a near-future dystopia series where the heroes are teenagers with special needs, is a character-driven war story which pitches twelve people against an army of millions, balancing intense action with a deeply developed neurodiverse cast.
Chris Bonnello is a national and international autism speaker, available to lead talks and training sessions from the perspective of an autistic former teacher. For further information please click here (opens in new window). Autistic Not Weird on Facebook