Reactions to Late Autism Diagnosis

Aside from a few Facebook friends, I have been so very demoralised by the reactions of others, to this single, most important event in my life – the discovery of my autism. This thing that I never really knew existed, outside of ludicrously stereotypical form, yet which has ultimately made sense of my entire existence.

There were people whom I honestly believed would have reacted along the lines of, “Really? That’s amazing! I see it now – that time you did blah blah blah? Wow, it must have been really hard at times, though?”  That was the reaction I yearned for – one that mirrored my own. One that reflected a sense of realisation dawning, of amusement, of fascination. From some, I longed for hints of finally understanding inexplicable hardships, the expression of a little sorrow or remorse, but still of excitement, littered with ‘of course!’ moments.

From my long-suffering partner, thank heaven, I received all of that. It was sincere and wonderful and timely. In fact, it introduced a renewed understanding for us both in a matter of a few traumatic hours. From others? None of it. None.

Top of the list has to be: Oh, don’t worry, we’re all on the spectrum somewhere. I am too.

I completely accept this response is likely to be borne of a desire to empathise, but failure to understand that being ‘on the Spectrum’ is to be autistic, and not merely possess a characteristic associated with autism, is incredibly frustrating. It significantly diminishes and even dismisses, the autistic person’s lifelong struggle with anxiety, frustration, exclusion, rejection, isolation, misjudgements, misunderstandings, meltdowns, shutdowns, uncomfortable/painful sensory experiences…you get the gist.

For some, my diagnosis means I have ceased to be an intelligent and competent adult. I need to be spoken to slowly and with enormous condescension in order for the process of lingual communication to continue in any meaningful form… Perhaps I have regressed to childhood as a direct consequence of a few hours in an office in London – and become suddenly and miraculously cognitively deficient as a result? That’s a neat trick!

There was another one from someone very close– someone who, pre-diagnosis, held me in high regard.  Apparently, everything negative that has happened to me, or around me, must have been as a consequence of my Asperger’s. You see, everyone else is ‘normal’, and I’m apparently not. Therefore, it naturally follows that everything is, and always has been, my fault, regardless of anyone else’s input.

Ah, ok. 🙁

The most popular option, though, has been to treat my diagnosis as though I have just announced a sudden death– to politely and uncomfortably acknowledge it, out of unavoidable necessity, then hurriedly change the subject, never to be touched upon again.  This is a favourite amongst some of those who claimed to be supportive pre-diagnosis but backed off faster than a rat up a drainpipe afterwards.  There it stays, presumably evermore, in the too-uncomfortable we-don’t-talk-about-that,-dear pile.

I’ve even been “forgiven” for having Asperger’s…

All the while in my mind, I’m here, both my arms outstretched, waving wildly above my head, silently crying out: Talk to me! I want to talk about it! This is a really big deal, and I want to share it with you! I want to explain just how much I’ve come to understand, now I have the answer!  How much my life makes sense!  To explain some of those ‘things’!

I want to laugh about some of those cringe-worthy moments; I want to groan, in appreciative company, about all the, ‘Noooooo, please Earth, swallow me up’ moments. I want to talk about how it all happened in my brain. I want to know what happened in your brain! 

I want to explain how we all misunderstood each other, I want to explain, again, how much consideration I gave other people. Always. Even though you thought I did the opposite. I know now, you’ll be able to understand how badly you misjudged me. I want to explain how!  I want to tell you I now understand why you did what you did (even though you’re obviously still weird). 😛

I want to listen and explore, and laugh, and wonder at it all. I want to explain to you just how weird you are, and why! 😉  I want to hear you tell me how weird you think I am! How interesting our differences are!  I want to share it with you!? Hello?…

But you all look so uncomfortable. You walk away, briskly, looking for all the world as though you want to run, glancing warily backwards, whilst muttering under your collective breath…

This is not just my experience. It is the experience of so many of us. Why? What on earth is so scary? We know now, what the disconnect has been– we have different wiring, different social understanding, but we’re still all human? It’s downright blooming fascinating!

Why does ‘autism’ have the effect of driving this wedge, where none existed before the actual ‘diagnostic’ wedge? None of us are a stereotype, whether we sit at Level 1 or Level 3 on the Spectrum. Autism isn’t a disease. I’d contend that it isn’t a disorder either and is ever more frequently referred to as Autism Spectrum Condition.

Is it because there’s overwhelming evidence supporting a genetic link? Are you worried it may ‘affect’ you? Maybe, but that still doesn’t account for friends’ responses…

As someone who was ‘neurotypical’ until a few tumultuous weeks ago, I am even more profoundly shocked by the typical reaction to me being autistic than I am by the revelation of my condition itself. This is so, so depressing. I thought we had all come so much further than that?

I remember (oh, so long ago) studying history in school, and marveling that human beings could ever have been so primitive as to marginalise minorities. But then I lived through some real-time, renewed marginalisation and bigotry, and thought yet again, “No! We’re still that primitive?”

And then, aged 51, I’m suddenly, incredibly, in a marginalised minority myself. Even though I always knew I was different, I’d still lived my life amongst you, as ‘one of you.’  Blimey.  Now, I really know what it feels like to be outside, looking in. Wanting to ‘belong.’

I’d thought that diagnosis, with all the wonderful comprehension it brings, would gather me warmly and fully back into that fold. After all, in this modern age of ours, we’re all about inclusion, acceptance, and the celebration of diversity.

Aren’t we?

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8 Responses

  1. I dont have contact with people I grew up with and don’t have that many friends. I was officially diagnosed as on the spectrum a few years ago. A friend at uni had suggested it ten years before that but a doctor said “I wouldn’t be at uni if I was autistic”. I can understand the “we’re all a little bit autistic” comment. I got that one too. Neurotypical people think we’re strange but I think the strange ones are them.

    1. I’m currently in hospital, and got the reaction “but you’re talking to me, and you’re smiling!”
      And that was from the doctor 🙄 It’s going to be an uphill struggle! 😉

  2. Thank you for this.
    I cried as a read it, as a newly diagnosed autistic.
    I have found acceptance in odd places and rejection in places where I thought acceptance would be automatic.
    Phil, otherwise on here Leonardo.

    1. I empathise Phil (do the stereotypes allow me to do that)? 😉 The acceptance in the unlikely places has heartened me enormously though. I’m rapidly learning where I’m valued x

  3. Self-diagnosed female at 75 but pretty certain the cap fits me. Your experiences mirror mine. Thanks for a wonderful post.The real problems are that few people fully understand. My friends hadn’t even heard of Aspergers. How does one even begin to explain the complexity of it?

    1. Same experience here and I posted about it recently. When I disclosed to my family, they did not even offer a comment and it has never been spoken of again.

  4. The most common reaction I got from my friends was “Well of course, you are. We just assumed you knew, or we would have told you.” Has anyone else gotten that one?

  5. Excellent piece thank you for writing it so clearly. Im at the beginning of that journey, just starting to work out how to go for assessment, so I’ve got a long way to go. But even at this stage, where I think but can’t be certain yet that I am autistic, I just want to talk it over with close friends and family. Your paragraphs where you mention you just want to talk put it so perfectly. I hope now that you’re getting the responses you deserve.

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