What I'm Asking the Divided Autism Community to Consider


Autism has been a part of my life ever since my son was diagnosed six years ago. It was a word I knew nothing about, and I had no idea how much that word would change my life. Three years later, my second son was diagnosed too, both of them at only 18 months of age.

As a parent, you go through a whole range of emotions immediately after a diagnosis. Anger, sadness, jealousy, grief, confusion and fear, to name but a few, as you desperately search for information to try and make sense of what your life and your child’s life will become.

I tried to learn as much as I could about autism. I read books, attended courses, tried different therapies, diets, anything to find the best way to help them.

I spent hundreds of hours online, reading blogs of other parents, blogs of those on the spectrum, differing expert advice and participated in various online communities. You look for answers, you look for support, you look for people who understand what you’re going through. When you find the courage to reach out, you can find and meet others who are in your situation and just get what’s going on in your life.

In general, I’ve found the online community to be full of support, advice and real compassion for each other. What I’ve learned, and the people I’ve met, has even inspired me to make my own contribution to the quest for greater awareness and understanding as I now write my own blog, sharing stories about our lives.

During the last few months, I’ve also come to realize what a minefield the autism community can be. It’s full of different opinions, which is great, and one of the reasons it can be so interesting. A good, well-argued debate never hurt anyone.

But I never expected to find so much anger, judgment and vitriol these differing opinions can inspire. There seem to be so many people firmly rooted in certain camps, unable to accept anyone’s right to an opinion different to their own, full of anger, hate and abuse.

I know we live in a time of the “internet troll,” with keyboard warriors determined to upset others. I just never realised this would apply within a community discussing a disability that they all have a common link to.

The recent publication of Steve Silberman’s book “NeuroTribes” is one such event that has divided opinion and led to people clamoring to support or denounce his work. Again, by itself this is fine, but watching how these debates escalate into personal attacks is sad.

There are many topics just like this that provoke the same reaction:

  • Whether you should say someone is autistic or “has autism”
  • The pros and cons of different therapies: ABA, gluten-free diets, biomeds, supplements, medication, etc.
  • What causes autism: vaccines, mercury and lead poisoning, problems with the gut, etc.
  • The spectrum itself – the labelling of someone as high-functioning or severely autistic
  • Parents who wish their child didn’t have autism, and those offended by them saying it
  • Parents of those who have severe autism fighting with those who are on the less severe end of the spectrum

I could go on and on. These are just a few I see that regularly lead to in-fighting, anger and abuse.

I’m not here to pretend I don’t read things online and disagree with them, or even get angry about them. I’m not here to take sides and say who’s right or wrong. I’m not here to suggest that some of these arguments aren’t hugely important and that they shouldn’t take place at all.

I’m here to ask everyone to take a step back for a second, pause and really think about what you’re arguing about.

What if we invested all of that time, passion and energy into something worthwhile? What if we focused it all into what brought us into the online autism community in the first place? What if we could accept everyone’s right to their own opinions and beliefs?

We’re all on this online space because we’re on the spectrum or have a loved one who is.

We’re all active in this online space because we want to educate ourselves and others about autism.

We’re all here because we want to make the world a better place for our loved ones, and help create a more aware and accepting world that the autism community can flourish in.

Gandhi once said, “Be the change you want to see in the world.”

If we want the world to be more aware and accepting toward autism, surely we need to start by looking at ourselves, and be more aware and accepting of each other?

Follow this journey on Stories About Autism.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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