Navigating Toxic Autism Social Media

Renowned autistic advocate, author, and international speaker, Thomas A. McKean, shares his views on how parents can navigate the increasingly challenging realm of autism advocacy on social media.

You may have noticed that autism support has taken a dark and toxic turn on social media over the past few years. Whereas once many people with autism (or autistic people, if that’s your preferred terminology) were supportive of parents, some now seem to be verbally attacking them. Social media is a great platform for all voices to be heard, but some comments are crossing boundaries into bullying.

So, what’s going on?

In my opinion, what’s going on is that, somehow, somewhere along the way, autism stopped being a disability for some and instead became an identity. It seems it has become “in vogue” to wake up in the morning, diagnose yourself with autism, immediately consider yourself the top expert in the field, and start commanding people you don’t know, and have never met, to think, act, and feel exactly the same way you do.

Now I know I don’t have the right to tell anyone how to identify. At the same time, if you are self-diagnosed only, and yet still proudly call yourself “actually autistic”, I do have problems with the obvious clinical falsehood of the statement. However, I have more problems with the constant, never ending tone, and language policing (not to mention bullying), some individuals are subjecting parents and officially diagnosed people with autism to.

I also have problems with some people thinking they have the right to speak for the entire autism community when they were never given the authority to do so (I can guarantee you that your bullying does not speak for me). Parents and actually diagnosed people deserve better than to be targeted like this.

So, how can we benefit from the valid support that does exist out there on social media while also avoiding the toxic crusaders? I am so glad you asked. Here are seven things you can do:

1) Don’t be afraid to block

I don’t like blocking people. It bothers me that there are times when that’s necessary, but some people out there just need to be blocked. Well-intending parents don’t need this tone policing and bullying. You have more important things to worry about, like raising your child.

If someone is tone policing or bullying you, if someone is giving you advice that you fear will harm your child: block them. Block them without hesitation. I believe this alone will solve 99% of the problem.

2) Leave the negative groups

There are good support groups on social media, but there are also bad ones. There are groups out there that seem to post nothing but, “Saying ‘person with autism’ is ableist!” or “The puzzle piece is ableist!” or “Autism Speaks is pro-eugenics!” or “Only a Nazi would use the term Asperger’s!” Leave these groups.

Everyone has the right to select the language and symbol that feels right for them and their family, including you. You don’t need this behavior. Nobody does.

3) Unfollow toxic friends

Sure, Joey was a hoot in Jr High, but do we really care about him now? All he’s doing is posting extremist conspiracy theory links, and suggestive pictures of himself.

Maybe it’s time for you to move on. Delete the people who give you grief or make you roll your eyes. Keep the people who support you.

4) Walk on by

Don’t feel a need to respond to online abuse. Even if the person posting is wrong, even if what they are saying is harmful, don’t feel a need to respond. You will not change their minds (and believe me, I have tried!). Don’t let them drag you down to where they are.

Just keep scrolling and let it go. If the harassment keeps up, block them. I have found this strategy to be much more calming and effective.

5) Remember, you know your child better than anyone

There are people with autism (or who claim to have autism) out there on social media who really do think they know your child better than you do. They don’t know them, they’ve never met them, never talked to them, never seen them, know nothing about them, but they still think they know your child better than you do. Some of them have even said as much, right to the parents’ faces.

But they don’t.

It is ridiculous to think they do. Dr. Stephen Shore was right when he said, “When you’ve met one person with autism, you’ve met one person with autism.” Each of us is different. That’s what makes this a fascinating (and annoying) disorder. What is right for one is not necessarily right for the next.

One way you can tell if someone is a good advocate is that they understand this simple fact. If they don’t, then don’t waste your time with them.

I know what works for me. I know what makes me feel better and gets me through the day. I know what works for my particular brand of autism.

I also know that I am in the minority in terms of what works for me. My job as an advocate is not forcing you to do what works for me, but to understand what works for you and find a way to get that going.

That understanding requires actually listening to both the parent and the person with autism. There are people who call themselves advocates who just aren’t willing to listen, because they already know everything there is to know. They don’t understand that the job of an advocate is to support you through one of the most difficult (and most rewarding) journeys a parent could have.

You know your child better than they do. If you feel something is wrong for your kid, it probably is. Block them. I am giving you permission. You have your child and your sanity to worry about, not their feelings.

Block them.

6) Trust your gut

If it seems wrong to you, believe in yourself.

Even if what you are reading in this article now seems wrong to you, you don’t need to continue reading. Of course, we’re not going to agree 100% of the time, and that’s okay. But if you feel someone is way off base or is bullying, trust your gut.

You don’t have to do something (or not do something) just because someone on social media says so. That includes me. If you ever think I am wrong, feel free not to take my advice. No hard feelings.

7) Follow the people who inspire you

I have a lot of followers on Facebook, and I am somewhat active there, because I like interacting with parents. There are people out there who can help you, who can be supportive, and who can make you feel good about parenting instead of feeling needlessly guilty. These are the people you want on your feed.

Look for the established advocates. The ones who have proven themselves. The ones who speak at conferences, who have written high-selling or award-winning books, who have served on advocacy boards, who have trained and traveled, and have experience working with various types of autism.

There’s a difference between them and random people on the internet sitting in their basements who have never done any of these things but just like to bully. The established advocates are far more likely to know what they are doing and more likely to be supportive and give you valid advice that shouldn’t harm your child.

If you want to, you are welcome to follow me: http://www.facebook.com/thomasamckean

Final thoughts

Social media has its good and its bad points. We must accept one if we want the other. But there are ways to minimize the bad and optimize the good. A few common-sense changes to your approach will make social media a much better place to be, and you will find support and help for your child. That support is out there. This will help find it.