When talking about autism, sometimes people get confused about what to say or about the facts. The only way to dispel rumors about autism is to talk about it. In this Interview With an Autistic Person, my anonymous source describes a very personal experience and how the things people sometimes say affect the autistic person.
At what age were you diagnosed with autism and how did the diagnosis come about? Diagnosed informally by an ex-employee of the National Autistic Society at 35. Sought out an official diagnosis at 47. Average age of diagnosis in the UK is 37 for women, and I think 33 for men.
Do you feel that your parents support/supported your needs well? Aspergers was not known about when I was a child. My mother is now in her 70s and is being totally supportive now.
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? There isn’t a correct way because it will be personal preference. I actually prefer being labelled as autistic rather than someone with autism (which sounds like ‘someone with temporary headache’ to me). I am autistic, and that’s that. Dressing it up to sound different doesn’t change the facts.
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? Constantly overwhelmed. I’m mostly sensitive to light, colour, movement, geometry and sound. Colours and movement feel like a rush of motion blur making me giddy, and I can actually feelthe right side of my brain straining to suck in all the excess information I don’t even want to register. It’s unpleasant and uncomfortable. It renders me mute and will ultimate knock me out into a temporary sleep or meltdown. Sounds are just excessive and unpleasant, and make conversing impossible because I cease to interpret spoken word. I canhear that words are being spoken, but it sounds like a foreign language.
Are there ways in which you feel limited by your condition? If so, how? I’ve hit a roadblock in my career because I cannot progress given that most managerial tasks involve working with people or organising projects. I’ve secretly ‘winged it’ through my career by Googling everything on a daily basis for my job, because my short-term memory is dead and I cannot ever remember how to do my job (I’m a programmer but I cannot ‘learn’ due to co-morbid ADHD-Inattentive and the aforementioned memory problem). I suffer a great amount of social anxiety and fear approaching anything that is not ‘routine’ (like having to take my car in for servicing, for example). Finding meeting rooms at work is too difficult, and I cannot recognise faces either and so I’ve walked out of my job (unnoticed) part way through the day because I don’t know what to do (and stress of the situation makes me fall mute, unable to speak at all). Lastly, I cannot shop for myself because of sensory overload. Supermarkets are my idea of personal hell so I attach myself to the trolley while my partner steers us through the aisles (I can’t even look at the shelves without feeling giddy and exhausted). I suffer acute headaches from visual stimuli and excess light so I often cannot function normally on any given day.
How can having autism have an impact on someone’s behavior? It impacts males and females differently (I’m female). I cannot speak to my colleagues (even if I recognise any of them), I am unable to converse and I don’t understand other people’s jokes (I take everything literally)! I become stressed if kept away from my hobby at length. I suffer extreme levels of anxiety at minor things. I can speak out of turn or say something deemed inappropriate (not downright rude, but making some observation that apparently is not ideal for the situation). I am socially awkward and don’t know what I’m to do in any given social situation. Do I sit? Stand? Take off my coat? Do I shake hands, kiss a cheek or hug (hope not!)? I try to fake eye-contact and can look at the person I’m speaking to provided they are not looking at me. My partner often shushes me when we’re out if I start speaking out about things (like commenting on someone else’s groceries in the checkout queue – that’s one of my good ones)! I cannot understand someone talking if we are in an unfamiliar location because my brain is again busily sucking in all the shapes, colour and words. involuntarily. I fidget, rattle, tap anything and everything. I avoid conversation or contact with people where possible. I cannot manage phones too well so leave that to my partner. There are hundreds of little things every day – too many to list, but these hopefully offer some examples.
Follow-up: How can parents, teachers, etc., help someone with autism to make it through a situation that’s creating frustration for them? By not reading a book that describes just ONE person with autism. Everyone is very different. While I feel pain to extreme degrees, there are people who feel no physical pain (equally dangerous). While I become over-stimulated by colour and light, there are autistic people who cannot get enough stimulation and will stare into bright bulbs and such. Basically, we’re all very different and the best thing anyone can do is probably ask – and let the autistic person write down their needs rather than verbalise as that is often much easier.
What is the most annoying thing anyone has ever said to you regarding autism (and why did it annoy you)? * “You don’t have Aspergers; my son has it and he has this, this and this…” his goes back to people having a singular understanding of autism. The woman in question had a son in school who was generally disruptive and causing a problem for his class and teachers. Despite me having ADHD as well as Aspergers, I was deadly quiet in school and tried not to bring any attention on myself whatsoever. Most of our symptoms are invisible. * *”Many people are sensitive to bright lights [replace bright lights with any other sensory trigger]”. This is more a small frustration really because the speaker is usually trying to be helpful and understanding, and not intentionally trivialising.
Do you think there is a cure for autism? More importantly, would you want to be cured of autism? Feel free to elaborate. No, there is NO cure for autism, and Autism Speaks has brought about considerable harm in its relentless determination to ‘cure and eradicate’. Yes, I would absolutely want to be cured (especially of the social anxiety, co-morbid chronic depression, auditory processing and ADHD) but I wouldn’t want my IQ or my obsessiveness over my special interests to be taken away too. People at the mildest end of the spectrum who don’t suffer sensory disorders and such tend to disagree and state that society needs to change rather than cure people with autism.
[ctt tweet=”Not All People With #Autism Behave the Same. “Don’t Call Me Rain Man.” http://ctt.ec/fKHmJ+ @embracespectrum #AskanAutistic” coverup=”fKHmJ”]
If you could tell society anything, what would you want to say (try to keep it PG)? Don’t ever assume you know autism because you saw “Rain Man” or read about someone. We are all extremely diverse in what we experience and much of it is invisible, so please ask us what is needed if we appear to be in a difficult situation, and understand that we cannot fit in with neurotypical social norms and such because we don’t all understand them.
Hopefully, you learned a lot about how an autistic person feels from this interview. Now when you start talking about autism, hopefully you will change your phrasing and assumptions about autism. Think about the person’s feelings and how they might feel when you make comments about Rain Man, other people having the same symptoms and NOT having autism, and trying to compare one autistic person to another. These things matter to an autistic person and remembering these things will make your conversations much easier.