As we continue to learn about autism from the best source–autistic individuals–hopefully you’ll notice that each person has their own story. Last week, we heard from Jay, owner of the blog Autisticality. Jay changed my perspective about how to address autistic individuals. To go from a person-first approach to talking about autism to an identity-first approach changes my overall approach to language when it comes to autism. Today, I’ve got Briana, who also runs her own blog at Not a Puzzle Piece. She was kind enough to answer my questions about autism with great detail. Read further to get answers to some common questions about autism from her perspective.
10 Important Questions about Autism Answered
Part 2 of Ask an Autistic Person: Briana
- At what age were you diagnosed with autism and how did the diagnosis come about?When I was 12, one of my electives was being an aid in a special ed room at school. A few weeks or months into the term, I was chatting with the teacher (I don’t remember about exactly what) and she asked me if I had ever been evaluated for Asperger’s. I’d never even heard of the term, so I looked it up when I got home that afternoon. My self-diagnosis was fairly involved, but I won’t bore you with the details. I was formally diagnosed at the age of 14 as I needed it to qualify for services in school. My official diagnosis was PDD-NOS, although I identify as autistic as that is now how the DSM categorizes it.
- Do you feel that your parents support/supported your needs well? This is a complicated question. I think my parents were very good about the social aspects of it, and tried to help me make friends, get along with teachers, etc. However, they did not support me at all in terms of other areas where I was affected. They would often push me to the point of having a meltdown by making me stay in overstimulated environments even after I expressed a need to leave, and would shame me when I lost it. For quite a while they also made fun of my stimming. Until just recently (I’m 18 now), they refused to accept the diagnosis. It caused me a lot of pain during my teenage years.
- 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 tend to default to identity-first language (“autistic person”), as it’s what I personally prefer. I can’t be separated from my autism, and I’m not ashamed of it. If someone else on the spectrum asked me to refer to them as “a person with autism” instead, of course I’d do that so they would be comfortable. It’s not anyone’s place to make a decision on how all people with ASD should be referred to.
- 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. I’m sensitive to loud/unpleasant noise and certain textures (e.g., the sound styrofoam makes when handled, or wearing socks without shoes, etc). Mainly, it’s just an extra annoyance in the same way that being itchy or having a stuffed nose would be. A meltdown is of course much more intense. Let me know if you want me to try and describe that – I’d do it here but it is difficult and I feel like my answers are long enough already! 😛
- Are there ways in which you feel limited by your condition? If so, how? In some ways, yes. I can’t do things like attend live concerts or go to the movie theater, because they’re just too overstimulating. However, my ability to tolerate unpleasant sensory experiences has definitely gotten better as I’ve gotten older. I can manage most things, but if it’s a new experience or I’m having a rough day I might need to take a break and do coping skills or have someone walk me through what will happen. In regards to meltdowns/sensory overload: this is really difficult to explain. It’s sort of like having a screaming in your head that’s so loud normal thought can’t get through. It’s overwhelming and you get so desperate to get rid of the screaming that you’ll do anything. That is the meltdown (hysterical crying/screaming/harmful stims/etc). It continues until all the internal noise has stopped.
- How can having autism have an impact on someone’s behavior? I think that’s different for each person. Probably the most obvious is that since autism can make communicating harder, it’s easier to get frustrated – either because I don’t understand what someone means, or because I have a problem putting what I mean into words. I’m more or less blind to facial expressions and body language, myself, so I sometimes have a hard time understanding if someone is lying, or telling a joke.
- Follow-up: How can parents, teachers, etc., help someone with autism to make it through a situation that’s creating frustration for them? Break things down into more manageable steps. (“Clean up this room” is harder than “put away the things on the table, then clear the floor, then vacuum the floor,” etc.) Also, providing a space and time to just decompress is extremely important. When I was younger I would sometimes need to be reminded to use my coping skills, because even though I knew them, it was hard to remember about them when I was frustrated. That’s gotten easier as I get older.
- What is the most annoying thing anyone has ever said to you regarding autism (and why did it annoy you)? Anything relating to how “high-functioning” I am, or implying that since I can talk, I don’t have “real autism.” Functioning labels like that don’t reflect ability to understand nonverbal communication, live independently, hold a job, cope with sensory overload, adapt to new situations, etc. (I also have a tendency to lose my words and go nonverbal under extreme stress, so there’s that.) I have never had “high-functioning” directed at me as a compliment. It’s either used as a justification of why the other person thinks I don’t really have autism, or a reason to deny me services. It’s maddening.
- Do you think there is a cure for autism? More importantly, would you want to be cured of autism? Feel free to elaborate. No, we can’t cure autism, but there are ways to make life more manageable for those with it by means of therapy, services, etc. If a cure existed (and I don’t mean prenatal tests to abort autistic fetuses – that’s just eugenics, and it’s disgusting), I wouldn’t want it. Autism is so hard-wired into the brain that the only way to cure it would be like doing a brain transplant, if such a thing were possible. You’d have a completely different person. I want to be exactly who I am.
- If you could tell society anything, what would you want to say (try to keep it PG)? We are all human, and regardless of ability, we’re all worthy of respect.
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Thank you, Briana, for sharing your perspective and answering these questions about autism so honestly. I’m so happy to continue to learn and share knowledge with everyone who reads my blog.