Autism

You can be #actuallyautistic and not harass autism parents

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Autism and the #ActuallyAutistic community

I usually keep controversy off my blog but tonight I’ve decided to use my platform to speak up and shed some light on a dark side of the autism community in which there’s a great amount of controversy. To name some: the arguments on whether ABA therapy is abuse, debating a boycott of Autism Speaks, and whether parents should be allowed to speak about their child’s autism if they themselves are not autistic.

People from the #actuallyautistic community have been coming to my blog for years to harass me for not sharing their views on autism. Their attacks started again recently, and I’m tired of my recent silence on the issue for fear of incurring the wrath of those angry individuals. I often get messages from autism parents who completely stopped talking about their kids’ autism on social media out of total fear of being attacked by the #actuallyautistic. Enough is enough!

I’d like to also point out the irony in how these people justify their hateful actions in defense of “neurodiversity.” Yet by claiming that only autistic people should be able to speak about autism, they are excluding individuals like Charlie, who don’t have that luxury. So for now, I’ll be Charlie’s voice, and I’ll be the voice of parents who are too afraid to speak up. Raising an autistic child is lonely enough as it is. We don’t need that negativity from people who should be on our team. Be better. Be kind.

As an autistic adult, #actuallyautistic do not speak for me.

To all adults with autism, autistic adults or however you want to call yourself, who are respectful despite their different views. Thank you!

Get Eileen Lamb’s  book, All Across the Spectrum here

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8 Comments

  • Reply
    Amanda
    2019-08-14 at 3:21 PM

    Yes! Thank you!

  • Reply
    Zara
    2020-10-22 at 12:11 AM

    Well then perhaps you lot ought to stop telling us autistic men and women that because we are so-called ‘high functioning’ (a label which does nobody any good seeing as it gives the misunderstood belief that we don’t face very much hardship) we don’t need support. I shan’t be replying to any remarks you or anyone else in support of you and your laughable, dismissive and rude-ass attitudes

    As always, it really is always about autism warrior moms, aka individuals that don’t even live with autism themselves and so cannot REALLY say anything but do anyway …

    • Reply
      Eileen
      2020-10-23 at 10:59 PM

      Except I’m autistic too.

    • Reply
      Ashley
      2021-02-10 at 9:26 AM

      Exactly what I have been saying! Its getting ridiculous. We are usually the bullied ones why do it too?

  • Reply
    Jeff
    2021-04-02 at 12:00 PM

    Hmmm. This is interesting to me. I’m just learning about the actuallyautistic and autismspeaks controversy. Personally, as a blogger with an autistic son, I think it’s completely valid to tell *my* story of how autism affects *my* life. I don’t because he’s a teenager and by telling my story, I’m telling his story, and he doesn’t want me to do that. I have Tourette Syndrome so I know a bit about non-ND people representing me. Sometimes it really grates on me. I recently read Motherless Brooklyn (about a detective with TS) and I found the whole thing extremely offensive. But then, I follow several “Autism Moms” who, by telling their children’s story are also telling their own story. And I as an “autism dad” find that helpful. I don’t think there is a right or wrong here, but various shades of gray that get into how the story is told and why. (BTW, I’ve never been diagnosed, but we all assume I’m on the spectrum as well).

  • Reply
    Scully
    2021-04-03 at 6:35 PM

    Thank you Eileen for your post. This part of the ASD community is becoming increasingly toxic and problematic.. it’s creating more harm and marginalization for our community than it claims to try and correct.

  • Reply
    Sandra Dean
    2021-04-24 at 2:38 AM

    It upsets me that the actually autistic tribe seems to think if we aren’t living as an autistic person we have no right to speak for them. As a parent of an autistic young adult I am living it every day and I can use my voice as a parent to give my opinion and advice to others. We are here to help and support one another not divide.

  • Reply
    Also Actually Autistic Mom
    2022-06-29 at 7:26 PM

    Funny enough I’m coming to this post because I typed a very long Google query “why does the actually autistic community neglect the area of autism experiencing more severe deficits”. As someone who is ND myself I find it outrageous that they speak for my son but find it offensive if I do it. How can they possibly know what we go through daily in our homes? One person had the nerve to tell me he found it upsetting that fecal smearing is often cited as an experience many families in the community experience. But if such a high % of us experience this…that is a fair assessment. This isn’t uncommon for us to experience…repeatedly. Don’t say it’s not happening or isn’t a thing if we’re telling you it happens. For reference: I was in an autism mom support group asking how they curbed this since my son was waking in the night and doing this while unobserved, and an AA took this moment to tell me I was wrong. Except I don’t know any moms of NT children dealing with fecal smearing at 7. Your autism or my autism doesn’t define the experience of the whole community. It’s your experience. The end.

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