Miss Jones,
I’m rather frightened of children (as well as most other humans, for that matter) and have never considered having any of my own. But if you don’t like dealing with your child’s “inferior genetics”, may I adopt her? I don’t know if I could be a good or even mediocre parent, but at least I wouldn’t let her spend her life thinking she never should have been born. Even with my social skills as they are, I am not oblivious to how much that kind of attitude could contribute to “a hellish existence” in even the most picture-perfect neurotypical child.

If I decided you were a shithead (which I haven’t really…….this is just for the sake of argument) and then told you so to your face, in front of a huge crowd, you’d be pretty pissed off, right?

It’s kind of the same thing for me…..to read about parents of autistic kids thinking that autism is a horrible monster and going on and on about how much their lives suck because of it, etcetera. I’m autistic. Do you think it’s exactly fun for me to wake up 2 hours before going somewhere, because it takes my brain and body that long to prepare? Not really, because going to sleep early is hard for me and I still need the same number of hours of sleep as a nonautistic young adult. Do you think it’s fun for me to have a meltdown in front of my family? No, it’s actually INCREDIBLY humiliating.

I get very irritated with parents who believe that their lives are living hell BECAUSE OF AUTISM.

I understand frustration. Hell, my parents have vented their frustration to each other and to me many, many times. But believe me, your autistic child is AT LEAST AS FRUSTRATED as you are, if not more so. He may not be frustrated about the same things you are, or in the same ways that you are, but that doesn’t mean he isn’t feeling frustrated about something. Actually he has the same set of feelings you do, only they are probably triggered by very different things, and manifest themselves differently.

For the record, I do NOT think you are a shithead, Mr. McKenna. I only made that analogy because being called bad names tends to evoke a rather visceral reaction in another person’s gut, and I needed something very graphic to make my point.

I am a verbal autistic. One of my closest friends is almost entirely non-verbal. She was fifteen before she could put together a short sentence, and even then her sentences didn’t appear to make sense or relate to the situation. She is still unable to speak at all for over eighty per cent of the time.

One of her most vivid memories is being trapped on a school bus as a non-verbal eleven-year-old, wedged in between her special needs teacher and her support worker. She needed one-to-one support all the time. (She still does.) She was rocking back and forth and bashing her head on the bar of the seat in front of her because the other children on the bus were singing, and she couldn’t cope with the noise.

“She seems to be responding to the music, doesn’t she?” the support worker asked the teacher.

“Yes, I think she likes it,” the teacher agreed.

And to hear that conversation carried out over her head made her angrier and more frustated, and the only way she had of trying to communicate this to people was to bash her head on the bar. No speech.

This is why she is particularly upset by videos such as ‘Autism Every Day’, because in these videos she sees children who are put in situations that she herself knows to be very distressing. And once again, she sees adults claiming to be able to interpret the behaviour of those children and to speak with authority on their behalf.

This is an adult woman who has been placed on Incapacity Benefit. To receive Incapacity Benefit in her country (New Zealand) you have to be examined by a team of professionals, who submit their results to a central panel of doctors. You can only receive the benefit if both teams agree that you’re going to need intensive one-to-one support throughout your life and that you will never be capable of having a job.

Two weeks ago this friend got very upset because the light over the sink where she normally brushes her teeth was broken, and her sister tried to make her clean her teeth somewhere else. She had had an anxious day to start with, and this was the last thing that she could tolerate. She seized the door and started bashing her head against it. Hard. She concussed herself.

She objects strongly to videos such as the ones made by Autism Speaks. Being filmed in situations like that wouldn’t do much for her anxiety levels, so all this talk about how such films are ‘necessary’ for autistic people doesn’t make any sense.

As I said before, I’m a verbal autistic. I also struggle with incontinence trouble and have some other messy problems that you do not seem to associate with people who speak. It’s very degrading and upsetting to film somebody in that situation, irrespective of whether they can use spoken language or not.

Presumably you do not experience continence problems. Presumably you do not fall to the floor in supermarkets and start biting your arms when the noise gets too much. I do, and my behaviours aren’t uncommon amongst people who are labelled ‘high-functioning’. Yet you seem to assume that you have a deeper understanding of what autism is like than we have, because you have dealt with REAL problems and we haven’t.

This puts autistic people in a very difficult situation. If we complain about Autism Speaks videos in speech or articulate prose, we’re told that we’re far too mildly affected to know what we’re talking about. If a non-verbal autistic person tries to complain in her own way – through body language that screams out, “I hate this. Stop it!” – or through signing or art, she is ignored. After all, she can’t speak, so she can’t possibly have anything to say.

And you are trying to come up with an explanation for them. The first explanation, or possibly the first relatively charitable explanation, that you have hit on, is that people who post here have never experienced things like this, and that is the reason why we dislike this video.

It’s not the right explanation.

Perhaps it’s identifying a lot with some of the situations described and shown in the film, and yet being highly disturbed by how they are framed.

Perhaps it’s having a background in a way of thinking about disability that probably has nothing to do with the way you think about it.

Perhaps it’s being too aware of what it would be like if someone with total power over us, took away a large part of our support system, and then invited camera crews into our homes to see the result.

(I’ve personally had two meltdowns on camera, even in situations where I had a good deal of support and consented to the camera crew being there. And that was extremely uncomfortable. I hate to think what it’d have been like if they’d asked my support staff to stay home those days, the way they asked the parents in the film to do.)

I totally believe there are children who have days like that even with all the support they can get. But it was specifically stated that this was not the usual amount of support, and that’s what I was responding to. Also to the fact that I saw children demonstrating a number of abilities that were never described in any positive way on the film (or even any way at all, they simply glossed over them in such a way that, I am told by several non-autistic people, makes it easy for people to ignore them).

At any rate, you can feel free to explain away our opinions, but it doesn’t erase our very real knowledge and experience of things you seem to think we don’t know about.