For today’s Ask an Autistic Person interview, you’ll meet Matt, who got diagnosed with autism at the age of 31 and whose son also has autism. He talks about growing up with parents who didn’t know he had autism, his opinion on person-first language, and how it feels to know he has a disability now that he’s an adult. Matt also runs a blog at txtopia.tumblr.com where he writes a lot about his thoughts regarding autism. So, let’s get to the interview!
1) At what age were you diagnosed with autism and how did the diagnosis come about? I was diagnosed at age 31. After the birth of my first son, I regressed pretty hard and my wife and I were having a lot of difficulties in our marriage. Meanwhile, we’d been looking at a lot of SPD and autism literature for my son (now also diagnosed) and much of it was seeming very familiar to me.
2) Do you feel that your parents support/supported your needs well? No. I didn’t really have a lot of the more outwardly visible problems (like meltdowns). I think they took an “as long as he’s not complaining about things, he’s probably fine” attitude, which is obviously not accurate for someone on the spectrum. So even though my parents weren’t really neglectful people, I see a lot of myself in stuff I read about kids who suffer from neglect growing up.
3) I’ve heard some people say we should refer to you as a person first (a person with autism) but others feel that it’s okay to say someone is an autistic person. What do you feel is the correct way to talk about someone having autism? I think it should generally just be what the person themselves prefers. I prefer autistic or aspie, but I don’t have a strong aversion to “person with autism”. If someone refers to me that way, I generally just politely correct them.
The only thing that gets under my skin is when people presume to correct me on how I refer to myself.
4) Do you feel overwhelmed by environmental stimuli? If so, can you explain how it feels (for you) to have a strong reaction to sensory stimuli? Yes, but it’s difficult to explain. I’m not really conscious of the stimuli as I’m experiencing them. It’s just the after effects that I notice: stimming unconsciously, feeling drained, going into shutdown, etc… I think this is pretty atypical for people on the spectrum. It happens consistently enough that I know it’s a real issue, but I’m not able to really identify the mechanism for how I’m processing the stimuli.
5) Are there ways in which you feel limited by your condition? If so, how? 6) How can having autism have an impact on someone’s behavior? (sort of answering 5 & 6 together here) Yes. For example, there are wide ranges of topics that I don’t discuss with people (eg politics and religion) because the intensity of discussion is often to much for me to handle and can lead to shutdown. I also avoid certain activities that are too draining because of the sensory overload (such as going to the grocery store).
I’m still getting comfortable with admitting that I’m actually limited in these areas. When you’re not fully aware that you’re limited you just sort of work around the limitations unconsciously. It sounds easy but you end up rationalizing your behavior in weird ways because you haven’t actually examined the real motivations behind the decisions you make.
In some ways becoming aware of it is more difficult, because it’s less effortless. However, it also means being able to see your accommodations for what they are so that they’re not seeping into and impacting other areas of your life. It also means being able to better anticipate when you might need accommodations in advance rather than relying on sort of ad-hoc hodgepodge assortment of coping mechanisms built off a bunch of trauma and anxiety.
7) Follow-up: How can parents, teachers, etc., help someone with autism to make it through a situation that’s creating frustration for them? The important thing is to step back and acknowledge that your instincts for how you’re interpreting their behavior are probably wrong. This is what frustrates me most, and what’s likely to send me into shutdown most of the time. I’m articulating as clearly as I can, often at great effort, yet the other person is locked into seeing things from the wrong perspective.
Pull yourself back from the situation. Work through what their behavior is telling you step by step. Look for the place where you make that leap from seeing/hearing a certain behavior to assuming it means something else.
8) What is the most annoying thing anyone has ever said to you regarding autism (and why did it annoy you)? I only get to pick one? I’m not sure I can do that. People say a lot of things about autism that annoy me. There are probably some common themes though.
Perhaps the one that frustrates me the most is how often people seem to actually discount what I have to say about autism precisely because of where I am on the spectrum, like they would take me more seriously if I wasn’t autistic at all. It’s still a very real issue where people, especially parents of autistic kids, view people on the spectrum who are capable of articulating complex thoughts and opinions about their experiences as “not really autistic”.
This is made all the more aggravating by the fact that it’s often actually very difficult to articulate those thoughts and opinions precisely because I’m on the spectrum. To have someone use your disability as a reason to dismiss your feelings about your disability, as well as how hard your disability makes it to articulate those feelings, is ridiculously demoralizing.
9) Do you think there is a cure for autism? More importantly, would you want to be cured of autism? Feel free to elaborate. Is there a cure? Definitely not. Anyone who says otherwise at this point is a complete charlatan. could one be developed or discovered? Possibly, I certainly wouldn’t bet against science at this point in history. However, I think the word “cure” is often used misleadingly in autism discussions that causes a lot of confusion. Some people say “cure” and actually mean cure. Some people mean treatment. Some even mean euthanasia. The discussion could be greatly improved if people would use more accurate and precise language.
Treatment seems both most likely to be something that actually gets developed/discovered as well as what most people are actually talking about when they say “cure”.
Whether or not I would try a treatment? Maybe. I mean, obviously if all it did was treat the bad parts of ASD and make my life objectively better of course I’d take it. But that’s not how any medicine in existence actually works. There are always side effects and trade-offs. Whether or not I would try at treatment would hinge quite a bit on what exactly those side effects would be.
10) If you could tell society anything, what would you want to say (try to keep it PG)? I’ve tried several times to write something lengthy and insightful here, but I keep running into that whole “difficulty articulating complex thoughts” problem I mentioned in #8. So instead I’ll simply summarize it as: be more humble and give autistic people more credit.
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What would you want to know if you could ask anything? The series will run on for several more weeks, usually on Mondays, so if you have a question for any of these wonderful people I’ve interviewed, please feel free to ask. They’re very open!
Thanks to Matt for sharing his thoughts with me so that I could continue to get the word out about how it feels to have autism.
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