Photo by Peter Brown
Erin Clemens is an author, speaker, consultant, and advocate on the autism spectrum. She recently presented at a TEDx conference on “The Natural Rhythm of Stimming.” This week she shared some of her personal experiences as someone on the spectrum*. She hopes that by sharing these experiences, people can learn from what she has been through, and apply it to what may help others on the autism spectrum.
How did you first feel upon receiving an autism diagnosis? Has this changed?
When I first received my diagnosis of being on the autism spectrum, I didn’t really know what it was, so I shrugged it off. I wasn’t any different than I was before. Also, I’d already received a diagnosis of ADHD when I was younger, so I assumed that whatever was different about me was because of that.
This feeling has definitely changed a lot over the years, and continues to change. A little while after I was diagnosed, I noticed that although I hadn’t changed, others changed in the way they treated me. They understood me more, and were much more patient with me. I became a major self-advocate, in hopes that by sharing my experiences I could help others who may be struggling as well.
I also didn’t really feel like I wanted a “cure” in the beginning. However, as I’ve gotten older, I can see that others on the autism spectrum seem to struggle a lot more than I do in some areas. And sometimes, I feel frustrated with my own struggles. I don’t know if a “cure” would be the answer, but perhaps more ways to help me with the issues that many “neurotypical” people don’t seem to understand or struggle with as much. I would love to get more therapies or treatments for these struggles, and some more acceptance from others.
You’ve written about how sometimes you “blend in” enough to not appear autistic, which might make it seem as if you’re looking for an “easy out” when you are asking for help. What advice do you have for parents of children who are in similar situations? What ways can parents advocate for their children or teach their children to advocate for themselves in situations like these?
It’s difficult, because I think it’s even hard for me to know whether I am trying to find an easy out or really need the help. I think for parents, they need to have an idea of what their child is capable of, and help the child to feel confident about themselves by staying positive but still honest about things.
However, I remember when people would always tell me “just do your best”, and I took this statement literally. I thought that my best was pushing myself until I would break down. So instead of telling me “just do your best”, maybe give me an idea of when it’s okay to stop pushing myself, too. Because otherwise, I’m not going to know where that stopping point should be.
I also didn’t know how much help I should ask for. Sometimes, I wanted to do things on my own, but I really needed the help. Other times, I would be having a bad day, and get easily frustrated. I’d ask for help and others would tell me it was something I could do on my own. It’s hard for me to figure out how to manage every situation, no matter how many times I practiced. Every situation is new to me. And even though I can do something one day, that doesn’t mean I can always manage it the next. So I suppose my best suggestion would be to take things day by day and try to get through one situation at a time.
What have people closest to you done to support you that you’ve found especially helpful?
I’ve found that the people closest to me especially helped me by translating what other people are saying that I may misunderstand, and by being direct about things. At the same time, they are always there to explain how to handle tricky situations. I’ve been through a lot of situations, but I struggle to apply what I’ve learned to other areas. So they really help me to understand what to do every day.
Do you have any advice for parents teaching their autistic children to self-advocate?
I think what parents can do to best help teach their children on the autism spectrum to self-advocate is to allow them to teach them when and where (and to whom) it’s appropriate to say “no”. Most “neurotypicals” seem to get the situations where they should or should not say this, but, as someone on the autism spectrum, I struggle to figure this out. It may also be good to make sure that the child doesn’t feel like they will be penalized in some way when asking for help. The only reason I stopped asking for help when I was younger was because no one believed me when I said I needed it. The other thing that parents can really do is to stay positive, but realistic and honest. Teach the child how to say or do things on their own, and help them by breaking down the task step by step and practicing often. Also, try to keep a positive attitude about things such as receiving therapies, so that the child realizes that these people are there to help and will want to participate more.
What mistakes do neurotypical autism advocates make? In what ways are they helpful?
The truth is that neurotypical autism advocates and self-advocates on the autism spectrum all make mistakes. I appreciate anything that a neurotypical autism advocate is willing to help with, but I love it when advocates help to empower people on the spectrum.
How would you rate society’s acceptance of people on the spectrum today? What ways can we make it more inclusive at a personal or local level?
I think society’s acceptance of people on the spectrum today is incredible. Not only does society recognize that there are differences, but there are more and more programs and places that serve people on the spectrum. Stores have quiet shopping hours, special carts and check-out lines to provide a better shopping experience. Museums and theaters have sensory-friendly events. Some hotels, airports, beaches, and amusement parks even have autism accessibility programs to make traveling easier. Compared to just 10 or 20 years ago, acceptance has grown incredibly. I think the best way we can make it even more inclusive at a local level is to expand the reach, affordability, and frequency of these programs and events already in place.
*The views expressed here are her own.