Reactions to Late Autism Diagnosis5 min read

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?

Jo Bloggs

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6 Comments

  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. Author

      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.

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