The Autism Community and the Autistic Community

In the ongoing dialogue around the needs of Autistic people, I see a pretty consistent divide.

There is a group of people saying that Autistic people need to be put in therapy or treatment to ease their symptoms, and that it would be good if there was a way to cure or prevent Autism.

And there is a group saying they don’t and it wouldn’t.

There are also two phrases I see consistently.

Autism Community. Autistic Community.

Generally speaking, those who say Autistic people need to be put in therapy or treatment to ease their symptoms, and that it would be good if there was a way to cure or prevent Autism are part of the Autism community.

Generally speaking, those who disagree are part of the Autistic community.

This next bit is important.

Parents, please realise that you are part of the Autism community.

Your child is part of the Autistic community.

I mention this because I keep seeing people who are part of the Autism community speaking out as if they have the right to say what the Autistic community needs. I wish they would stop. You don’t get to say what a group of people needs unless you are part of that group. The only time it is alright to speak on behalf of a group of people is if they have told you what they want and asked you to speak with them. It is possible to speak with the Autistic community if you are asked to, but that doesn’t make a person part of the Autistic community.

In my experience, Autistic people do not want to be cured. They do not want to be fixed. They do not want to be expected to appear “normal”. They do not want large organisations who don’t listen to them to speak for them. They do not want parents who agree with said large organisations to speak for them.

Parents, I have something to say to you.

There is a pretty good chance that your child will agree with the adults of the Autistic community when they grow up.

So before you go around spouting the truth of what the autism community thinks, and patting each other on the back for your advocacy, you might be wise to first listen to what the Autistic community wants.

Your child is a part of that community.

As they get older they will know you have actively stood against their community.

They will know you stubbornly refused to listen.

They will know you were part of what causes the problems they face.

Parents, I have something to ask you.

Please, stop framing what you believe the autism community wants as what is right for the Autistic community.

Autistic people can do that for themselves.

9 thoughts on “The Autism Community and the Autistic Community

  1. Hmm what about the people on the spectrum who cannot speak, they can’t self advocate. You are suggesting they become forgotten? This is what happens in the “autistic” community, the people most impacted have no voice at all, and your article seems to support just that. If, as his mother, I do not stand up and point out that first of all the agony, and inabilities he faces every day is far from a gift, who will? Certainly not those who are impacted to a lesser extent… I refuse to let those who cannot self-advocate have no advocate.

  2. That’s not what I am suggesting at all Veronica. Everyone can advocate for their own needs. You might like to read the writings of non speaking autistic activists like Henry Frost, Emma Zurcher-Long, Tito Mukhopadhyay, Ido Kedar, Amy Sequenzia, Mel Baggs, Barb Rentenbach, Larry Bissonnette, and Tracy Thresher.

  3. It’s always sad to me when someone assumes that the autistic community doesn’t include everyone on the spectrum, then tries to make people who are verbal shut up about their experiences because they don’t deem them ‘autistic enough’… There are plenty of ways for non-verbal people to communicate and they do have powerful voices. Some NTs just don’t know how to listen to something that doesn’t sound like them. They just want to see sob stories and martyr themselves as mommy-warriors. Advocate for your kids, sure, but make sure you’re not doing it in a way that knocks them down. What we have can be a gift. It can be difficult as hell, sure, but it’s not all bad. Seeing the world differently is a gift, because we can see the beauty others overlook, create things others can’t imagine. Even if it’s just in our heads, that doesn’t mean it doesn’t have value.
    Excellent article – people in the autism community need to listen to what autistics say! If they love us like they claim they do, then they’ll listen to others like us to learn how to better relate to and care for us.

  4. Veronica’s answer really upset me. Just like having a non-speaking (not non-verbal) autistic child legitimize and still gives you the right to think you can control this person like your NT philosophy is the bedt andthey can’t do nothing without their neurotypical tutor.
    That is really deamining.
    More deamining is this sad habit from neurotypical parents NTsplaining advocates to always back up the «low functionning» to say they are the masters who should remain in command of autistic people acknoledging the fact that for them autistic lives are worthless if not controlled by a neurotypical.
    When choosing between two stereotypical representation of autism «genius» or «r*tard» they always go with the latest because it gives them power and lower autistic people so the control upon their lives is justified.
    NT parents and every NTsplainers stop speaking on my behalf especially if you feel the urge to describe me in a bad light. (He is broken, he lives «with» autism, he is ill, heres a good treatment for him).

  5. How would you suggest we advocate for our children that cannot communicate what they need? Seems to me you are very one sided because you can express yourself and your needs. What about those who can’t? All people with autism matter. However as I read this I think of my granddaughter who will probably never function at the level you do. She won’t drive a car, live on her own, be able to cook a meal, travel, have children. She has no fear of what is dangerous. How do you suggest we as care givers advocate for her? As much as I understand you want your voice to be heard and I respect that, however I’m still very confused as to how to support our child that has no voice. We accept her as she is, we love her as she is. She is the most beautiful gift. Her soul is pure and she is the sweetest child, innocent. But she,I’m afraid will never have your voice. You may disagree that we have done everything we can to help her. To advocate to give her a voice. The thought that we as caregivers, parents, and grandparents have stood against your community is rediculous. We want our child to be happy, safe and loved far beyond anything else. You have no idea the fear that we have, who will care for our non verbal lowering functioning children when we die? Of course we want a cure maybe that’s a stretch of the word. We want our children to live independently without fear of some sick twist taking advantage of them, hurting or abusing them when we are no longer here to protect them. Seems to me the OP it’s more angry then anything. And just a thought. You are very fortunate to be able to voice your opinion but just like me you can’t speak for everyone. I am not in your shoes, you are not in mine. And I will do whatever it takes to assure my granddaughter is loved and cared for the best possible way that I can. I came here looking for a way to improve my granddaughters quality of life after a very in lighting conversation with an autistic women. And I’m even more confused now then I was before.

    1. Hi Stephanie,

      if you read the other comments left here you’ll see I’ve responded to a very similar concern expressed by Veronica.
      Everything you say I’ve heard before, countless times. I’d encourage you to read the writings of the non-speaking autistic people I mention in the comment to Veronica.

      I would like to add, in specific response to you, that you have made some big assumptions when you state I do not know the fear you have for your granddaughter. You do not know me, or my children, or the challenges we have in our family. I don’t know how old your granddaughter is, but you refer to her as “the sweetest child, innocent”, and as a child a few times in your comment. I could be wrong, but it sounds like she is still young. It’s really important to acknowledge that we cannot predict how our childrens lives will go, how their skills will develop, or how they will mature. My own children have shown me that time and time again.

      I do not claim, or even try, to speak for everyone, as you imply. But there are non-speaking autistics who speak very strongly and clearly for themselves. Please find them online and read their words. {As mentioned above: Henry Frost, Emma Zurcher-Long, Tito Mukhopadhyay, Ido Kedar, Amy Sequenzia, Mel Baggs, Barb Rentenbach, Larry Bissonnette, and Tracy Thresher}

      All the best, Michelle

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