No, We Are Not “All on the Spectrum”

Dear Reader, please know that the following is an opinion piece. I do not speak for the entire autistic community, nor would I want to.

People rarely discuss autism with me. It’s funny, because I’m more than willing to talk about it. I would not be offended if someone brought the subject up. In fact, I’d be kind of relieved to discuss something that’s well within my comfort zone.

If I bring it up, on the other hand, what I usually get in response is an uncomfortable silence, a rapid subject change, or an even more rapid departure. This saddens me, because being neurodivergent is a huge part of who I am, so avoiding the subject makes me feel as though people don’t care to really know me, or worse yet, that they think I’m broken and deserve pity.

I suspect that some people would like to know more about autism from someone who is actually on the spectrum, but they are afraid of saying the wrong thing. That’s understandable, because a lot of “wrong things” get said to me and my fellow travelers. Still, I believe that most people mean well, so if you want to talk about autism, and you’ve found someone who is willing and able to discuss it with you, here are some tips from me:

1. Make sure the person you’re talking to actually identifies as being on the spectrum. A lot of adults don’t have a clue that they are there, because not much was known about autism when we were children. Others may not wish to be identified as such, or may not be autistic at all. Assuming someone is autistic is like assuming someone is pregnant. Labeling them as such might lead to embarrassment.

But more and more adults are starting to realize that they’re autistic. (That is the reason for the ever-increasing statistics, not some conspiracy theory about vaccines or environmental issues or watching too much TV as a kid.) Autism has always been here. We’re only just now learning to recognize it.

2) Avoid these controversies unless you know the person very well:

• Cures. Seeking a cure implies there’s something wrong with us, and many of us don’t believe that. We’re different. We’re a minority, but we don’t need fixing. We need understanding and accommodation.
• Autism Speaks. If your main source of information to date is from this particular place, then you have definitely been exposed to a biased viewpoint. This organization is one of the strongest proponents of seeking a cure, and many of us on the spectrum resent this because it gives so many parents false hope when they would be better served by focusing on their autistic child’s strengths and unique ways of communicating.
• Cognitive Behavioral Therapy. CBT has caused many people on the spectrum a great deal of pain. In essence, it’s a way to teach people how to behave like a “normal” person. That sets us up for failure, because we’re not society’s definition of “normal”.

CBT, in my opinion, teaches people that they’re broken and need fixing. Most of us have been masking our whole lives just to fit in, and it’s exhausting. The last thing we need is professional insistence on that behavior. Learning coping skills and learning how to communicate with neurotypicals would be to my benefit. Learning to “pass” because I’ve been deemed inferior the way I am definitely does not.

3) Never say, “You don’t look autistic.”  We get that a lot. But autism doesn’t have a look. It’s as absurd as saying, “You don’t look like you’ve read Dante’s Inferno from start to finish.”

Another annoying aspect of that statement, as well-meaning as it may be, is that it seems like you’re attempting to give us comfort, or tell us that there’s still hope that we are not afflicted with this horrible scourge. It also implies that you know our challenges, or lack thereof, better than we do ourselves. We are not here to defend our diagnosis because it causes you discomfort.

4) Never say, “We are all on the spectrum.” We get that a lot, too. While there are many spectrums in this world, the autism spectrum comprises less than 2 percent of humanity. Making it seem like it’s not a big deal and that we’re all in this together is extremely invalidating of our daily struggles, needs, and challenges. We deserve support, recognition, and accommodation. We have the right to be seen and acknowledged.

5) Don’t try to push an autistic person toward “normalcy.” Personally, I get sick of people saying that I need to get out more, or that I just need to make more of an effort to be more extroverted, or that I should stop making such a big deal out of everything. Stop being so sensitive. Toughen up. Get a thicker skin. Get over it. Stop acting like a child. Stop being weird. Don’t worry so much.

Aside from the fact that you’re not an autism professional and therefore you’re pulling these “simple fixes” out of thin air, they are also value judgments that have no basis in reality, and frankly, they’re offensive. It’s not as if I’m just being stubborn and have refused to see reason up to this point.

Everyone should have a right to be accepted for who they are. I’d much rather have acceptance than have a constant barrage of suggestions about how I should change in order to not be so f**ked up. Wouldn’t you?

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Okay, I’m starting to understand why talking about autism is so intimidating. There are a lot of third rails that should be avoided. But having said that, I’ll give you a list of things that I wish people were comfortable enough to ask me.

1. What inspired you to seek an autism diagnosis?
2. What was it like, having such a dramatic shift in your self-perception post-diagnosis?
3. How does communication differ for neurodivergent people vs. neurotypical people?
4. What types of sensory challenges do you have?
5. What things make you feel more comfortable in hectic environments?
6. If I suspect that I may be on the spectrum, what do you suggest I do next?
7. What sources of autism information do you recommend?
8. What are your special interests?
9. What do you feel are the best things about being autistic? What are the worst?
10. What would you like people to know about autism and/or what do most people misunderstand about autism?
11. What frustrates you the most about the neurotypical world, or what about it do you most envy?
12. What triggers you?
13. What causes a meltdown, and what is it like for you?
14. What is the most interesting thing that you have learned since your diagnosis?
15. May I talk to you about this again if I have more questions?

P.S: I wish people would stop calling it Autism Spectrum Disorder. It’s more like a syndrome in my opinion. But then, the acronym would be rather unfortunate. 🙂

I genuinely believe that if more conversations of this type took place, people would gain a broader understanding of autism, and those of us on the spectrum would have a much easier time navigating this neurotypically-biased world.

What would you like to know about autism? Ask in the comments below, and I’ll do my best to answer, or direct you to someone who can.

Like this quirky little blog? Then you’ll enjoy my book, even though it’s not about autism. http://amzn.to/2mlPVh5