Autism

#ActuallyAutistic and rejected by the autistic community

#ActuallyAutistic autism mom blog theautismcafe actually autistic

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#ActuallyAutistic: I’m in the gray area between the neurotypical and autistic communities.

I am stuck in the middle.

I fight to help neurotypicals realize that no matter how “normal” an autistic person looks, their disability is real. I fight to help neurotypicals see autistics as their equal. I fight because I don’t want a single autistic person to be bullied, and I fight to normalize non-harmful stimming. You’d think that makes me an excellent autistic advocate, but somehow, it doesn’t. Large parts of my community reject me.

Rejected by the #ActuallyAutistic community

I’m rejected because I believe ABA therapy is great if done right. I’m rejected because I think that neurotypical parents of autistic children absolutely can speak about autism from their non-autistic perspective and that the attempts to quiet or shame them, primarily, are toxic bullying. I’m rejected because even though I respect others’ right to say it how they please, I don’t always say “autistic” over “person with autism”, and I’m not offended by either term. I’m rejected because I don’t reject the color blue, nor the puzzle piece symbol.

I’m rejected because I don’t share the same views as the most vocal autistic subgroup who label themselves “advocates” or #ActuallyAutistic.

So I’m stuck, then, between these two worlds. I’m not neurotypical and nor could I pretend to be, and I’m not severely autistic either. I don’t see autism as a life sentence, nor as a gift for most who have it.

I want people to know that autistic people deserve to be loved as hard as any neurotypical. But I also want them to know that not all autistics are dealt the same hand. Some will learn to communicate and live independently (like me), but others will never be able to.

Stuck in the middle

It’s a challenging spot, this gray area. I hear about similar issues in many other communities, like deaf people who are shunned for getting cochlear implants.

If we were to remember one single thing about this, it’s that no one person or group can speak for an entire community. I indeed do not. But they don’t speak for me either. They don’t speak for anyone but themselves.

#ActuallyAutistic autism mom blog theautismcafe actually autistic

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14 Comments

  • Reply
    Scully
    2021-05-12 at 4:03 AM

    Eileen <3

    It is so very hard to endure this. So many of us are getting hit with it. Be it not using the word Autistic or using the puzzle pieces or discussing our medical diagnosis of Asperger's syndrome. Or even being Aspies.

    I don't understand why they have to tear our community apart nor what they gain from doing so.

    Thank you for your blog and the space to share.

  • Reply
    Sav
    2021-06-23 at 12:39 PM

    Any community which has the expectation of total agreement across a broad range of subjective single issues can only be a community of people who have given up thinking or actively engaging. Bitter and angry people trying to enforce a self-created orthodoxy is rarely a good sign for them or anyone else.

    How ironic and sad that the loudest people in the fight for acceptance of unconventional minds should be so concerend with policing dissent, heresy and wrong thoughts. ‘Neurodiversity through puritanism!’ is one of the worst rallying cries I’ve heard in a long time.

    I might be being too optimistic but we seem to have a tendency to swing backwards and forwards between less and more tolerence of individuality in society. Perhaps we’re due a correction soon.

  • Reply
    Em Williston
    2021-10-11 at 5:04 AM

    The puzzle piece is a harmful symbol I just don’t understand how you don’t reject it. And ABA has left many autistic people scarred and with PTSD. And autism is not a “disorder” or something that needs to be fixed. By not rejecting things that are harmful to autistic people like you and me you are destroying all the progress for a understanding world that we don’t have to conform to for neurotypicals. Not having an opinion means you are siding with the problem because your not against it. I really hope you find the information and help in understanding how important standing against these things are

    • Reply
      Eileen
      2021-10-18 at 2:51 PM

      How sharp was the puzzle piece that hurt you? What hurts advocacy is people focusing on trivial issues like terminology and symbols.

      • Reply
        Drew Koss
        2021-11-11 at 8:28 PM

        Right on.

  • Reply
    Drew Koss
    2021-11-11 at 8:33 PM

    Your perspective is mine. Thank you. I prefer individual identity to group identity. Perhaps what I really object to is taking either approach to an exclusive extreme.

  • Reply
    ELMER CHRISTOPHER CARAMPOT
    2021-11-17 at 3:43 AM

    Although, I am still new to the #Actuallyautistic group, I have noticed this language policing. About two years ago, my university accidentally hired a disability speaker who was an non-disabled actor portraying a person with a disability. It didn’t fly with the students to say the least. I remember being in the impromptu meeting. The Disability Outreach Coordinator was doing damage control. The students — minus a few disabled students — were exclusively non-disabled, all in their early twenties. The coordinator was explaining the issue with disability representation, but they’re were doing with language policing tone. None of the students dared speak. The conversation was one-sided. I tried to make it inclusive as possible. It failed.

    The problem I see is that it is a Sav suggests. The move to create and enforce a language-based ideological orthodoxy that silence dissent, also silenced disagreement, thinking or actively engaging. There were two communities in that room. Non-disabled students and disabled students. Not the students who were a part of the same university community.

    I can’t dare to imagine what language policing is teaching young people.

  • Reply
    Fenn
    2022-01-12 at 11:20 AM

    You’re not stuck in the middle. You’re unwilling to change for the better.

    • Reply
      A
      2022-04-04 at 1:31 AM

      Or you are fenn. Those who speak the loudest tend to be the least educated

  • Reply
    Allison
    2022-01-26 at 1:23 AM

    I really appreciate that you wrote this.

    I’m an autistic young adult that considers herself pretty active in many forms of advocacy, but I don’t feel right adhering to everything the autistic community wants me to believe. It’s alienating – and autistic people already deal with enough of that from society at large. It’s so wild to me that many online autism advocates have thrown critical thinking to the wind in favor of extreme positions; not all ABA is abuse but that doesn’t mean we can’t regulate it better, imo.

    No community should be expected to be born into a series of opinions. I was raised on the phrase “when you’ve met one person with autism, you’ve met one person with autism” haha.

    You’re not alone 🙂

  • Reply
    Sher
    2022-02-04 at 6:53 AM

    Seeing this a year later but I am 50 and recently diagnosed. Every community is divided in the same ways it seems. A spectrum within the spectrum, so to speak.

  • Reply
    Anonymous
    2022-04-04 at 1:36 AM

    It’s because of the militant tribalism that has infected every space of society. Now a days u can’t have a conversation with people, to have you both say your side and the other listen. People are dumb just wanting to parrot talking points at you to either feel righteous or smart and they are neither. No point in engaging with these people online, it’s wasting you’re breath. They have no interest in growing or learning because they think they are the educators here to teach us dumb kids what to think. It’s real a bunch of authoritarianistic stuff I don’t want to be a part of. I’ll hang out with u in the grey because unlike the #actuallyautistic I understand there is more then black and white in the world

  • Reply
    Kit
    2022-04-17 at 4:33 PM

    Hi there. I see this is an older article, but I found it via a Google search, “rejected by other autistics.” I am 35 years old, just officially diagnosed about a month ago, though I’ve had suspicions for a quite a fee years. When I got my official diagnosis, I immediately started joining Facebook groups and following pages. I joined many of these hoping to find some sort of connection, a place to feel I found my people. Turns out, it only made it worse. I’m terrified to converse with them or voice any of my own opinions, as they don’t align with theirs. The majority of these “actually autistic” people seem to be from the hard core “woke” crowd. Angrily shrieking about anything they as a mob don’t like. Always trying to one up the last person with some outrageous story or opinion and immediately cancelling anyone who dares to have a different opinion. So here I am like you, stuck in the middle. Never fitting in quite right with the “neurotypicals” and not fitting in with the autistic community that I share a diagnosis with (or, at least with the loudest ones). All that said, I am glad I found your article. It made me feel less alone, so thank you!

  • Reply
    Rae
    2022-05-04 at 10:47 PM

    Wow. I just got my diagnosis (age 50) and now tentatively seeking out online groups. Found the #actuallyautistic and ended up here. I had literally no idea there was this divide. How very sad. I wrote a blog recently about my gender identity in relation to my autism and now I am scared to go back to my site and look at it because I think I might have used the puzzle piece as my image. I just thought this was a harmless symbol used for badges and such. Certainly don’t find it offensive because I haven’t taken the time to really analyse it.
    I guess maybe this puts me in the grey area as well… no surprises there… spent my entire life not fitting in – why did I think I would suddenly ‘find my place’?

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