I just had an e-mail from Adam at the UK charity Sense, for disabled people, about the parents of autistic children.
Autistic people experience the world very differently from mainstream people. They interact with it very differently. The sensory information their brains receive and how their brains deal with that input, it is all very different from what happens in the brains of mainstream people.
Autistic people see, hear and feel differently.
In my opinion, it is wrong to call all autistic adults and children “disabled” unless you stress that the “disablement” mostly refers to the constraints that society imposes on the lives of autistic children and adults.
Society expects all of us to think and behave in a certain way and make largely the same choices. That means that society is flawed because this is an irrational expectation. Ask any digital nomad or vanlifer how traditional “get a job” (“for a lifetime so you’ll have a good pension, too”) people respond to their decision to live life differently and you’ll get a sense of what I mean.
When parents of autistic children state that their child is different, believe them and accept that as a fact. Dont call them paranoid. Don’t tell them that they are just bad at parenting.
But there’s something else that we have to remember.
Autistic people are all different, too. No two autistic people are the same.
Until very recently, I knew nothing about autism and was convinced I had never known anyone who’s autistic. After I started reading up about autism, I discovered that I had in fact since 1982 known a woman who’s autistic. She’s meanwhile confirmed that and she too had only learned recently that she is autistic. Then, to my astonishment, I discovered that I know another person who’s autistic, someone who I first met in 1984. Both people are university-educated and have what is called “high-functioning autism”.
The first one deals with auditory overload from people talking by filtering out that external input, shutting off the gateway to the input internally some way. (This causes frustration for mainstream people because nothing they say gets through. They simply cannot get through to her.) The second one responds with irritation and deals with it by walking away and going into a separate room, shutting the door to external auditory input quite literally. (This too can cause frustration, but also and probably mostly in the autistic person.)
Until you spend enough time with autistic people in private, you rarely get to see that – and in which ways – they are different, because they have learned to “mask” from a young age.
Almost like with DID (dissociative identity disorder, which is something very different), the person who goes out into the world to interact with it is not necessarily the same “person” you’d get to see if you were to observe an autistic person relaxing at home. Masking = trying to look like everyone else and hiding that you are different. (Why? To avoid friction.)
If you want to have some idea of how masking works, just picture yourself interacting with the CEO of the company at which you work versus interacting with your two-year-old or your husband or wife at home or at the supermarket when you’re out shopping. Your behavior toward the CEO will be quite different from how you deal with your child, your husband or your wife.
Don’t tell the parent of an autistic child that he or she is a bad parent or just plain paranoid. That would be you making an ass of yourself.
Read Karla’s story: https://www.sense.org.uk/blog/four-things-you-shouldnt-say-to-a-parent-of-a-disabled-child/
If you want to take your understanding one step further, think about whether wanting to eradicate autism from the world could be like wanting to eradicate giraffes because you like cattle and are used to dealing with cattle.
