In an earlier post titled Autism is Not My Disability I said
“Autism is not the disability, although symptoms of my sensory processing difficulties can leave me crippled and unable to function. The disability is society’s misunderstanding of Autistic people.”
Although I still agree with my previous statement, I’ve been rethinking this title laity and feel a strong urge to elaborate.
First I want to clarify that there are parts of Autism that are disabling.
We can have mental disabilities, epilepsy, IBS, Anxiety attacks, chronic insomnia, extreme sensory sensitivities, and more. In my mind these things are not Autism – because they differ so widely in all of us. I consider these commodities are unfortunate side effects that Autistic people encounter (too often).
These things ARE true disabilities and are often invisible – so when I say Autism is not a disability, I mean Autism as a way of thinking in itself is not a disability. This does not mean many Autistic people are not disabled.
I wish it weren’t true, but many of us are.
Personally, I am not sure if chronic illness will eventually leave me unemployed and unemployable. It is a constant fear as I scramble to get my health under control. Doctors are apathetic and if you’ve learned to act “normal” people doubt your diagnosis every time you mention it.
There are certain things I need help with, some simple accommodations that make my life easier. In work and in my personal life I tend to ask for the following (although people accuse me of being difficult) :
Sit somewhere quiet. At work I may wear headphones with music or ear plugs. Working from home is also a great option. My ears are so sensitive they pick up everything. I can’t focus on one conversation or catch all the words in a loud busy room. I like calm restaurants or off peak times.
Sit somewhere with the gentle lighting. Natural light without glares and certain soft artificial light is something I need. Modern office light is the worst. The wrong lighting or lots of glares makes me feel sick and hurts my eyes and brain. If I can’t escape I may put shades on or wear a hat indoors.
Ask for or make a plan. I like to know what’s happening and am honest about not enjoying surprises. I also need to know when things will end. Sometimes I may stay choose to late, if not, having an end time helps me to relax.
Say no to people. I am not a social person and can’t take a lot of going out. Socializing drains me like nothing else. Now that I work full time I have a hard time going out more than a few times a month. I say no to people more than they are used to but my health is important to me.
Try to get everything in writing. I have a hard time following verbal directions. Autism does impair some of my face to face communication skills. I also have impaired sort term memory and executive functioning.
When I ask for someone to put something in writing for me, it is one of the most important accommodation that I ask for. My reading level is FAR above what I can take in though speech. This helps ensure I don’t skip any important details.
Special treatment. It’s not fair for you to get special treatment.
If I am lucky people oblige me, however I get a lot of push back sometimes.
I feel like these accommodations are reasonable. When I have these things I am able to function at an optimal level. Without them I end up struggling to keep up with the basics. If you give me just a little I can go far.
I think differently and go about things in a different way. On my own this has never been a problem. My problems only appear when other people insist upon me doing things their way, insisting that I do things like everybody else.
They can’t see my disability and think I am asking for an easy way out.
They can’t understand how badly I need to do things my way and don’t see how much I struggle without accommodations. They are hard to get especially in the work place.
All I want is to do my best.
My Autism is not my disability – unaccommodating people are.