When I first found out I was autistic, I didn’t take it well. (Spoiler alert- things have changed a lot since then.)
I remember my conflicting response to having the news broken to me: the cross between relief that there was an explanation for my ‘weirdness’, and the grief of knowing I’d never be ‘normal’ like I was ‘supposed’ to be (back in the days when I thought becoming normal would actually be a good thing).
On top of that, I was the only autistic person I knew. So I needed the knowledge that I wasn’t completely isolated – and more than that, assurance that my brain wasn’t ‘wrong’ just because it was different.
This discussion has come up recently on Autistic Not Weird’s Facebook community [all links in this article open in new tabs, so clicking won’t interrupt your reading], and it’s been on my “articles to write” list for a while. And, given the sheer number of newly-diagnosed (and undiagnosed) people who look for help and insight for the same reasons as I did, I’m now pushing it to the front of the queue.
When we find out we’re autistic, reactions can vary.
These days – completely by accident – I have a reputation for being a positive autism advocate. (From my perspective, I only ever try to be an honest autism advocate. Maybe I’m supposed to be more negative about being on the autism spectrum, but these days I’m just not.)
But I wasn’t always positive. Not long after I found out, I began to see “autism” as a synonym for “everything that’s wrong with me”. That was because of my massively negative self-perception, and the fact that people around me – including those in authority – seemed to be defining me by my weaknesses rather than my strengths. After Asperger Syndrome was mentioned to me, I suddenly had a word for all these weaknesses.
By the time my diagnosis came, I began to recognise it for what it truly was: permission to be myself. I could go for the rest of my life without feeling like a “faulty” person just for not being like everyone else.
Autism was an explanation for previous life events that had confused me. Autism provided context for why I’d struggled in some areas of my life while being amazing at others.
Most of all, it triggered the realisation that all my previous attempts at changing my personality had been damaging myself rather than fixing myself.
Of course, all those realisations took a while. If you’re reading this, you’ve likely found out about your autism/Asperger’s quite recently. So here’s my advice to you, from a guy who’s been there.
1. This doesn’t change who you are.
Do you remember the person you used to be, three seconds before you learned that the word “autism” applied to you? Three seconds later, you were still exactly the same person. Hearing the big bad A-word didn’t suddenly spark an entirely new personality, or any new characteristics for you. It simply offered an explanation for the characteristics you already had.
Whether your opinion of yourself is positive or negative (remember that mine was negative), knowing that the diagnosis hasn’t altered you can be a bit of a comfort. At a time when you feel unsteady, it’s useful to reach for the things that remain constant.
In fact, this same advice is offered to parents of newly-diagnosed children too. (Learning that your child is autistic can be quite a frightening experience if you’ve been taught to believe that autism is automatically A Bad Thing). I’ve told a number of parents that their child is the same awesome person they’ve always been, and it’s helped.
So don’t panic. You’re still you. Don’t stop seeing yourself as yourself just because someone mentioned autism.
2. A ‘grieving period’ is ok, if you need it.
Not long ago, I asked my Facebook followers what their reaction was the moment they found out they were autistic. The majority gave an answer along the lines of “feeling relieved”, or “thinking ‘wow, that explains a lot’”. But some people cried. Some saw it as yet another reason to hate themselves.
Of course, it’s possible to have both reactions at the same time. Emotions are complex enough for us to experience conflicting or contradictory feelings. Like I said, I certainly felt conflicted.
If you find out you’re autistic and you’re sad for the whole day, that’s fine. If you’re sad for a week, that’s fine. I won’t give an expected or average length of time, but people certainly need time to adapt to the news and what it means for them.
(For reference, I may not have felt great when I realised I had Asperger’s, but I immediately understood myself better. At the time, that was enough- because my self-esteem was awful anyway. When my mental health started to recover, I started to see my neurology in a very matter-of-fact way, neither liking nor hating it. Another few years passed before I stood up to give a speech for a parent group in Cardiff and said “I have Asperger Syndrome and I bloody love it.” Which leads nicely to my next point…)
3. Despite what the world tells you, autism isn’t actually A Bad Thing.
I bet the first time someone explained autism to you (even if they just talking about it in passing), the first thing they mentioned was either all the bad stuff, or the savant/genius stereotype. Aside from that last bit, the advantages of autism barely enter the conversation.
In fact, even autism charities tend to present autistic people as struggling all over the place. It’s actually a pretty big dilemma that charities face – the choice between saying “autistic people are pretty awesome” and people thinking we’re just fine without help, or showing autism as a dreadful lifelong curse and raising more money to help autistic people.
One unwanted side effect of all this awareness (even though it’s helped vulnerable people enormously) is that autism is often seen by the public as a disadvantage first and foremost. This is unfair. We should be aware and considerate of autistic people’s struggles, but not let autistic people get defined by their struggles alone.
And this negative stereotyping can obviously be harmful to autistic people: parents often come to me and ask “how can I help my teenager who firmly denies s/he’s autistic?” Often they deny it because they don’t want all those negative stereotypes being applied to them. And who can blame them?
And actually, since writing this article I’ve been given permission to share this brilliant infographic from Harriet Cannon. See which ones apply to you.
I won’t lie – I kept my Asperger’s a secret for years, largely because I was afraid people would start seeing me negatively. Now I’m happily and openly advocating for autistic people. But it took me a long while to build myself up to that. For years, the knowledge was reserved for just me and very select group of friends and family.
On that note:
4. Decide who to share the information with, and why.
Just because you’re autistic doesn’t mean that people have to know. Don’t get me wrong – it can help if others know, but it’s hardly a requirement. Like any other diagnosis, it’s nobody’s business except your own and those you choose to share it with.
When I first wondered who to tell, I was very selective. So selective that I literally kept a list of people who knew, in the order they found out. (Yeah, slightly autistic trait right there.) In the year between my finding out and my first diagnostic appointment, the list reached 22 names. Sounds like a big number, but I knew hundreds (if not thousands) of people at the time, and saving it from the others was quite an effort.
My suggestion to you is simply this: it is entirely your own choice whether to share your knowledge with, but have a solid reason for why you wish to do so.
Because honestly, results may vary. I got pretty lucky with reactions from friends and family, but that was largely because I planned everything carefully and only told those I really, really trusted. My parents’ first reaction was to disagree with me, but that very quickly changed after they’d listened to me and the research I had done. Some of the headteachers I worked with (I was training as a teacher at the time) had already worked it out for themselves, and the others just asked “is there anything we can adapt in order to help you?”
My closest friends gave the best answer of all: “This isn’t going to change the way we think of you or anything. If you need support we’re always here for you, but you’re the same Chris we’ve always known. Nothing’s changing unless you want it to.”
Of course, there were a few people who gave negative reactions. But stuff them. Save your emotional energy for those who respond positively when you share news that means something to you.
5. If you feel isolated, find other autistic people.
I say “if”, but isolation is hugely common for autistic people. If you feel alone, you’re not alone in feeling alone.
If you actually like being alone (which is different to being lonely), that’s fine. But if you want to find relatable people, there’s no shortage of them. There’s an increasing number of local support groups (or general social groups) popping up all over the place, as more and more adults realise they’re autistic and don’t want to feel isolated.
Of course, the internet’s there too. In fact, I have no idea how autistic people managed before the internet came along and brought isolated communities together. I keep talking about Autistic Not Weird’s Facebook page because it’s relevant to what I’m writing, but I’ll drop the link here just in case you’re tempted. It’s a very supportive community (it’s a public page, but feel free to join just to lurk!). And if you know of any other good communities for autistic people, please leave them in the comments.
I’m going to be honest here: support for autistic adults isn’t great. It does exist, but don’t set your expectations unreasonably high. (In fact, the first doctor to see me didn’t offer me a referral because she felt there’d be no services post-diagnosis.)
If you do feel you need some support, what specific support do you think would help you? The clearer the answer in your own mind, the better you’ll be able to express it to a professional.
And bear in mind the support may not be autism-related. Personally I ended up getting therapy for anxiety. Not specifically linked with my Asperger’s (it was more associated with how I was being treated), but it was what I needed.
I wish I could specifically advise how to get support in each country, state, province etc. All I know for sure is that in Britain, most professional help is initiated by seeing your GP (and seeing another if the first one says no, as mentioned at the start of this point). If you have differing paths which have worked for you, please leave those in the comments too.
I hope this helps!
For those who feel like they’re the only autistic person in the world, I can assure you the feelings of isolation are unwarranted. More than 1% of the human population is on the spectrum, and – speaking as a guy with a maths degree – 1% is a much higher number than we give it credit for. And I hope that in time you’ll see autism as the source of a great load of your strengths, rather than make the mistake of focusing on negativity alone like I used to do.
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