To autism parents who’ve been bullied by #ActuallyAutistic

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To the parents of autistic children, you are not alone

To the parents of autistic children who’ve been bullied by #ActuallyAutistic, I want you to know that you’re not alone. They may be vocal, but they do not represent the majority of autistic adults. I see you and I get you.

I try to stay away from controversy as to avoid conflict. I also try to keep an open mind on autism-related issues. Y’all, I really try, but at times it’s hard to stay quiet. I’ve been harassed by autistic adults for years because of my views on autism.

These views—they’re not anything crazy. I believe that raising a severely autistic child is challenging. I believe parents should be allowed to feel and express any dark moments they experience without being harassed and shamed. I believe ABA therapy is a great tool for many autistic kids and that a few bad therapists don’t make the entire form of therapy abusive.

I know that these parents love their children with all their hearts despite the sadness they feel about the diagnosis. I believe grieving is healthy. Parents don’t grieve because they hate their children, they’re grieving the future they’d imagined for their child (and yes, also for themselves). They grieve the things most parents take for granted—the painfully normal things their child will likely never experience or accomplish. New goals have to be set for their child, often much more elementary and limited. They worry about this future and they’re haunted by the uncertainty of it. Will their child ever speak? Get dressed alone? Use the bathroom without help? 

The #ActuallyAutistic do not represent all autistic adults

#ActuallyAutistic, as they call themselves, state that parents who share their hardships around raising their autistic child are martyrs looking for pity—that they’re weak, selfish, and uncaring parents. They call out ABA therapy as torturous conversion therapy. They also believe that severe autism, as such, doesn’t exist. They blame the parents for not understanding their children, making the bold, hurtful assumption that these parents don’t go to the ends of the earth trying to do just that. They refuse to believe that some autistics will simply never develop an effective way to communicate. #ActuallyAutistic fail to understand that they speak from a place of extreme relative privilege when they’re bullying parents online about this very issue.

I’m sick of them claiming that parents need to “listen to autistic adults”. What hypocrisy. I’m autistic, and they tell parents to not listen to me only because they don’t agree with me. There’s not one single autistic voice that speaks for all of autism. The spectrum is too broad, and autistic people are just that—people, with the same range of differences as any other group. It’s impossible for any person or group to “represent autism”. Yes, they are actually autistic, but they do not represent autism, most autistic adults, children with autism, nor nonverbal autistics either.

Not all autistic adults online are mean

I want the parents who’ve been bullied by this community to know all this. There are many autistic adults, myself included, who would never make a parent feel bad for feeling sad, angry, or overwhelmed with their child’s diagnosis. So yes, listen to autistic adults, but don’t you ever forget that most of us don’t think you’re a martyr because you’re not a martyr. I know that on those hardest days, the degree to which you’re heartbroken about your child’s condition is equal to the deep love and compassion you feel for them. I get it. Many of us do, and we will never judge you. Your feelings don’t make you a martyr, they make you human—a beautiful, loving, vulnerable human.

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  • Reply
    2019-12-24 at 6:09 PM

    Wow, I love what you wrote. Thank you!

  • Reply
    B H
    2020-12-08 at 4:57 AM

    Should parents of autistic children be bullied and harried as they try their best to raise us? No. Of course not.

    However, the reality is for the vast majority (not rich) being autistic in a neurotypical world is hell. I (autistic) was suicidally depressed for my entire conscious life based at least partially on the failures of the neurotypical world to provide basic accommodation for those who are not NT.

    I am 38. People knew something was “wrong” when I was a toddler. Nothing material was done and I had no idea what my actual diagnosis was until I was 38.

    Is this because NTs are “bad people”? No. Most people are not “bad people.” Most NTs are not bad people. It is because they do not understand us and like almost all humans they fear what they do not understand. This is not a shortcoming, this is a biological imperative.

    But none of this explains why NTs should not be considered for expertise on autism. The reason why is because they do not have the brains of autistic people, have not lived the struggles of autistic people, and fundamentally, they are – not – autistic – people. They may be wonderful, lovely people, (and as their interest, tolerance, and proximity to autistic people increases, sympathetic and empathetic to us), but they are, as much as we and they might wish otherwise, outsiders.

    This is not to say that we should exclude them or treat them badly in any fashion. It is simply to say that we know ourselves, what we need and what we don’t, because we are who we are and we have lived the lives we have lived. We cannot thrive in a reality defined principally by the bounds of what NTs can conceive of and are capable of because we have different capabilities and weaknesses than they do. Again this is not because of a moral deficiency among NTs but simply a byproduct of the fact that we face a different reality and therefore differing challenges.

  • Reply
    2021-07-01 at 11:59 PM

    seriously BH it isn’t the world’s job to give you a cushy easy life, literally in the past 100 years or so everyone was fighting just to literally survive day to day most of the time. some still do. Yes being autistic is hard, being poor is hard, lots of things are hard. that is life, that is the world you are born in. that’s the life u must find a way to live. I hate it too most days but the mire I rage against the machine the harder my life becomes, the more I accept the world as it is the easier it becomes

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