Autism

#ActuallyAutistic and rejected by the autistic community

#ActuallyAutistic autism mom blog theautismcafe actually autistic

#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, nor Autism Speaks.

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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28 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
        Nícia Cruz
        2022-09-23 at 9:16 AM

        the puzzle piece shows we are a problem need to be solved. we aren’t a problem, and we don’t need fixing. that’s why most autistic people reject the symbol. research, think: it does wonders!

      • Reply
        Letícia
        2022-12-13 at 5:19 AM

        “What hurts advocacy is people focusing on trivial issues like terminology and symbols” – yes, focusing only on that hinders progress.

        Terms can, however, be a powerful tool to convey ideas such as not defaulting to “there’s something wrong with this person with autism”

        However, your point is important, because I’ve seen dozens of info pages that use “neurodivergent” and “problem” in the same sentence – so, indeed, we need to double down on teaching basic concepts and the differences between the neurodiversity, deficit-based, and other models of autism/autistic people XD

  • 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
        Letícia
        2022-12-13 at 5:22 AM

        A, that’s a bit extreme too

    • Reply
      Bryan
      2022-05-31 at 2:31 PM

      Fenn, that’s a bit extreme, don’t you think? Can’t you see how rigid your comment is? Just because you think you are right doesn’t mean you are, friend. Diversity is just that: diversity. it’s not monolithic. 🙂

  • 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
      Letícia
      2022-12-13 at 5:24 AM

      Yes, I think that no matter what, ABA needs better regulation – maybe that’s the final test we need to determine whether it stays or goes

  • 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
      Bryan
      2022-05-31 at 2:29 PM

      Totally agree. I am pretty darn liberal, but the wokeness of these folks…it’s just too much for me. If you say anything they don’t like you are shamed. They are bullies.

  • 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’?

  • Reply
    Bryan
    2022-05-31 at 2:28 PM

    Hello 🙂 I am a queer, fairly liberal ND person. I have found that many in the ND community are toxic bullies. There is this demand for narrative purity. If you don’t say the exact right words or believe exactly what they believe you will be publicly shamed. There are some who take things to the extreme. Extremes are not healthy or factual. This is not everyone of course, but a certainly loud and tolerated group of folks in this community.

  • Reply
    Angelo
    2022-09-22 at 3:20 PM

    I don’t necessarily agree with what you say, but I believe in your right to express your opinion and to consider it valid. Dissenting and diverging opinions are what enable us to grow as a community. Don’t give up! #AutiPower

  • Reply
    Nícia Cruz
    2022-09-23 at 9:07 AM

    Non-austic parents can’t talk about their autistic child because they can only see the behaviour, and do not know what leads to that. They don’t know how it feels to be autistic. So they can’t also chose ABA therapy for their children, because they are choosing it without their consent. ABA only tries to make ND people more similar to NT. We have our own culture, our own way of being, which isn’t wrong, just different. We need to be accepted exactly as we are, we don’t exist to meet expectations. We don’t tell a person in a wheel chair to learn how to learn how to walk: they can’t! We also can’t be like NT’s. ABA just makes us mask, and that takes a huge toll on us. It isn’t the same as a deaf person using a cochlear device (that device affects positively that individuals life), masking does the exact opposite and that’s why there are so many suicides in our community.

    • Reply
      K
      2022-11-05 at 9:56 PM

      The concept of not having the right to help a child “because you don’t know how it feels” just baffles me.
      We don’t know how any other person feels, but we can help them if we see that they need it.

      Autism is not a sickness, but take this analogy on what you said: a healthy doctor cannot help a cancer patient because they don’t know how it feels to have cancer. It just doesn’t make sense.

      I just think your views are sounding illogical, possibly parroting views that you’ve resonated with yourself, but without thought that every. one. is. different.

  • Reply
    jcjessica
    2022-09-30 at 12:55 PM

    Thank you so much for speaking out on this issue, Madam! You’re definitely not alone in this grey area and I’m happy to be with you in this area! You’ve made the day of a girl with high-functioning autism/Asperger’s better!

  • Reply
    Chris
    2022-12-06 at 2:15 PM

    I as an autistic have seen such destruction by some autism groups it is unbelievable. we all have differing opinions and experiences, and I found in attending some autism groups that there is cruelty, secretive mocking, ruthless gossip where lies are told, misinformation and alienation. It’s heartbreaking and something I knew nothing about when first learning I was autistic. People are targeted for social problems, for saying the wrong thing and simply for being disliked. Those in the groups are being misled. My experience was the group makes things worse. On every corner of internet there are people posting about what’s happening. ,

  • Reply
    Letícia
    2022-12-13 at 5:13 AM

    I think you’re very right that the most vocal part of the community shouldn’t ever speak for you. I really think we could be more open to listening to each other and not making each other feel like we need to hide our opinions.

    If we’re censoring autistics/ people with autism/ people on the autism spectrum (I prefer the 1st and 3rd), we don’t have an accurate representation of different opinions and personal experience. Like, we need to be able to talk these things out while co-regulating (lol) so we can distinguish whether each person is misinformed or if they have a way to back up their opinion.

    I honestly do have a hard time listening to people say they support Autism Speaks and the puzzle, because I think given their history I could never, especially because they were founded by moms who have done so much damage in their patronization and portrayal of autism, and who support research to prevent Autism. But I try to understand autistic people who can love all of themselves and still not want autism.

  • Reply
    Just a Visitor Who Agrees
    2022-12-17 at 3:58 AM

    I stumbled upon this post by accident. I am someone who has ADHD, and there’s a possibility I might have autism. Regardless of that latter point, I can identify with your message, but with other segments of the population that I am a part of.

    For instance, I am someone who is LGBTQ+, but frankly, I feel incredibly alienated by the vocal part of the population for several reasons. While I could tell you those reasons until I am blue in the face, it ultimately boils down to how I’m frustrated that this segment of the LGBTQ+ population acts as if the entirety of the LGBTQ+ population should act as a hivemind and to hell with anyone who dissents on anything, no matter how small. Funny thing is, I find that those who jump on me and others who are in similar predicaments don’t want to accept that I very likely share more in common with them than they assume I don’t. But even then, if that isn’t true, that still shouldn’t make people in my spot pariahs of sorts. For me, it often feels a lot more comfortable around straight cisgender people than other LGBTQ+ people!

    You see this mentality with so many social groups as of late, and it is incredibly frustrating. Sure, there are certain views and experiences that tend to be more widely shared within such groups over others, but that does not mean that everyone in those groups acts the same way and believes in the same thing, and frankly, I think it would be frightening if everyone did, especially considering that we live such different lives from each other, period.

    And by the way, yes, I did use “have autism” in the first paragraph. I used that because I don’t agree with the line of thinking that a lot of people who prefer “autistic” state. While I agree with them that autism is something that has a profound effect on your entire being and life, I don’t agree with the mindset it is who you are. I am someone who can be described by many adjectives due to all of my traits and experiences, and just some of those things are a bigger part of me than others, it still doesn’t negate those smaller things, and it also doesn’t negate that all of those things make up one unique whole that cannot be easily described into one label. (To be honest, I see basing your entire identity on one factor regardless of what it is as a sign of someone very likely not knowing themselves well.) I’ll respect that others want to be called “autistic” and call them as such, but I think that shouldn’t mean that I should negate how I would want to be referred if I learn that a diagnosis of autism is actually applicable to me.

    I also get tired of the whole mentality that someone who is outside of a social group cannot speak for and about that group. I certainly agree that these people lack the sort of insight that those within that group have due to not living that experience themselves. But it does not mean that these people are woefully ignorant and never can develop some form of understanding of the issues at hand. I find that those who shut down these allies tend to forget that, sometimes, people who see things from periphery aren’t blinded by certain bias that those of that group may have or perceive, as anyone can have bias of some form. And those on the periphery may consider pertinent points that those in the group may simply had not considered. Yes, allies, should be well-educated and not speak over those who they are supporting, but that does not mean that they are pointless. And, really, antagonism perpetuated groups in the minority and at a disadvantage is still antagonism at the end up the day–being in such groups does not give you a pass to treat others poorly and just ends up confirming the bias of those who are against those groups. (Though, there certainly have been instances of minority groups and the disadvantaged fighting back, and having that dismissed as being “antagonism,” when it actually wasn’t.)

    But even though I bring up all of that reasoning in my last paragraph, I do agree that there is so much unnecessary hand-wringing over terminology and symbols, and that time and energy really should be spent on more taxing issues at hand. Frankly, I think the best approach is allow for nearly all terminology and symbols to still be in use, but educate people as to why some people use some of them, why other people prefer others, and express that people should try to be mindful of how these are used on an individual basis.

    I’m hoping this period of tribalism and authoritarianism will soon pass. I’m not advocating for people to just be and do good for the sake of themselves and to hell with noone else. But I wish that people in general would stop this whole us versus them mentality and also the habit of groups destroying themselves from within due to not allowing for any dissent.

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