Have you ever wanted to know what it’s like to live the life of an autistic person? I have a son with autism, but he does not express his feelings in a way I can understand and oftentimes I wonder what he’s thinking and how he feels. That’s why I think it’s so important to learn what it’s like to have autism from someone with autism. In the next few weeks, I’ll feature different people with autism weekly and provide you with the 10 enlightening answers to questions I ask an autistic person. I hope that you will read and gain insight into their world.
To kick it off, today’s answers come from Jay, who writes about autism from a personal perspective on the blog Autisticality.
10 Enlightening Answers to Questions I Ask an Autistic Person
At what age were you diagnosed with autism and how did the diagnosis come about?
I was diagnosed at age 19, about a year ago. I began learning about autism online and found lots that I related to. After about two years of obsessive research, I was completely confident in my self-diagnosis. I decided to ask for a formal assessment so that I could have the ‘official’ paperwork to get the provisions and support I needed.
Yes, my parents have always been incredibly supportive. That said, they didn’t know I was autistic when I was a kid (because no-one did!). A lot of things probably would have been easier if we did know, but that isn’t my parents’ fault.
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 use identity-first language (“autistic person”), and most autistic people that I know also prefer that. I have a combination of reasons for that:
- In English, our grammar puts the adjective before the noun (e.g. “blue cup”). There is no reason to contort our own language in this one case.
- Describing me as a “person with autism” suggests that autism is something stuck onto me, that could theoretically be removed to leave a neurotypical person underneath. That is absolutely not the case. I have been autistic for my entire life, and it has influenced every aspect of my development. It makes no sense to imply that autism can be separated from me.
- When neurotypical people go to great lengths to use person-first language, it makes me wonder why. If they didn’t use person-first language, would they forget that we were people? If they need to contort their words just to remind themselves of that fact, I am not very confident in their ability to remember it.
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?
I have some sensory sensitivities. I get easily stressed when there is a lot of input at once, e.g. busy environments, lots of people talking, etc. It is basically a fear reaction – my body feels threatened by the overwhelming stimuli and gets me ready for escape. So I become less able to concentrate and feel anxious until I can get out of the situation. If I’m not able to escape, I will withdraw in an attempt to protect myself.
Are there ways in which you feel limited by your condition? If so, how?
I don’t know! Because like I said above, I’ve always been autistic. There aren’t bits of me that are “my condition” and bits that are “the real me”. That said, some of the main ways in which I am disabled (and which are probably at least somehow related to being autistic) are:
- I am extremely prone to anxiety. I am very anxious a lot of the time, which makes it very difficult for me to do anything.
- I am also prone to depression, as a result of the anxiety. I am fairly certain I have had dysthymia (chronic depression) for most of my life.
- I am not very good at communicating with people. I don’t cope well with subtle and complicated social situations. I am likely to miss hints and cues. All of this means it is very difficult for me to form any kind of relationship with new people, and very difficult for me to get along with people even in necessary situations (like work and school).
- I have a much lower threshold for stress and input than most people. I need much more “down-time” relative to “up-time”. That means it is effectively impossible for me to have a regular occupation like a job, because I cannot cope with that amount of up-time. A lot of people don’t understand this, because I seem to be articulate and intelligent and so they expect me to be just as ‘functional’ as an NT person, when I’m not. My brain takes longer to process and recover from things than most people, and I need lots of time to allow for that.
How can having autism have an impact on someone’s behavior?
I don’t know – see above!
Follow-up: How can parents, teachers, etc., help someone with autism to make it through a situation that’s creating frustration for them?
Ask them what the problem is, and ask them what would help to solve it. Communication doesn’t have to be spoken words. If someone is having trouble understanding what the problem is or what would help, then try experimenting with different solutions until you find one that works.
What is the most annoying thing anyone has ever said to you regarding autism (and why did it annoy you)?
Probably when people say things like “don’t let yourself be defined by your autism!”. It doesn’t make sense to say things like that, because I am defined by autism, in the same way I am defined by my gender or any other aspect of my identity. When people try to separate autism from my identity, they are essentially denying an extremely significant part of me.
Do you think there is a cure for autism? More importantly, would you want to be cured of autism? Feel free to elaborate.1
No, there is not a cure for autism. It cannot be cured because it is lifelong and is determined by the way the brain develops. You can’t just rewire someone’s brain. If you could, you wouldn’t be curing the autism, you would be destroying the autistic person and creating a new one in their body. I would never want to be cured of autism, because it would be equivalent to killing me.
If you could tell society anything, what would you want to say (try to keep it PG)?
I would probably just want people to realise that autism is not a negative thing, it’s just a different way of being. We are only considered disordered because we are in the minority. If autistic people made up the majority of society, then ‘NT’ people would be considered disabled by their “excessive reliance on eye contact” and “pathological need for social connection”. Autistic people are not the only ones who need to put work in to help people understand us – NT people should also be meeting us halfway.
If you could ask an autistic person anything, what would you ask?
linking up with Kathleen for the Blog Booster Party
Originally posted 2015-06-22 10:44:54.