Looking back in hope of moving forward.
Yesterday in an ASD support forum somebody asked for advice to include in a package for teachers and group leaders on working with kids with ASD. I had a miserable time in school, so I sent in some thoughts, hoping other kids might avoid what I had gone through. Also, I suppose, hoping that teachers would be interested.
Those thoughts and some expansions on them:
* Lack of eye contact is not a sign of disrespect. Thinking about it now, I suppose if you looked out at a room of students where 29 of them are looking back at you and 1 isn’t, that 1 would really stand out. But not making eye contact isn’t a sign of disrespect or even necessarily of distraction (see below!). Making eye contact is a lot of work and can actually be distracting in itself.
* I am paying attention, even if I don’t look like I am paying attention. Eye contact tends to be associated with paying attention, but this can be misleading with ASD. I don’t need to be looking at you to listen to you, and actually it might help me concentrate on what you are saying if I’m not thinking about “looking”. Stims or fidgets are also not necessarily a sign of distraction. I’m probably not even aware I’m doing that. Making me stop doing it might actually be more distracting.
* Don’t take things personally. People with ASD are often misinterpreted because ASD behaviors are read as though they are deliberate or social communication. But an ASD behavior is about ASD, not about you, and is not done because of you, because of disrespect or attitude.
* If I don’t understand something and ask for help, I really mean it. I’m not just being lazy. I frequently didn’t get much help from teachers when I had trouble with something. Looking back, I suspect that was because I was asking for help with something students wouldn’t usually need help with, that maybe seemed obvious. It’s also possible this was a function/dysfunction misunderstanding (see below). I am not being lazy and I am not deliberately wasting your time. I genuinely need you.
* Don’t use social humiliation as punishment or “motivation”. Hopefully most teachers don’t do this any more anyway. Making an example of somebody because of an ASD behavior, insulting or humiliating them in front of others just isn’t constructive. It can cause the person to shut down, melt down or at very least lose respect for you. And it will not necessarily help change the behavior anyway. The mistaken assumption is that the behavior is deliberate and can simply be stopped by choice (or because of pressure).
* I think people are confused by the mixture of function and dysfunction. If you can do one thing at the typical level, you are expected to do everything at the typical level. But actually you may have a spread of abilities and disabilities, and this varies enormously for each person. I was often told I was “being careless”, “not trying” or “not taking seriously” things where I actually was trying very hard and that I was genuinely struggling with, presumably because I did well at something else.
Looking back, I suppose teachers got frustrated with me because the techniques they’d trained in, that worked with most kids, for years, did not work with me. The mistake was to assume I was doing that deliberately, as an act of rebellion or arrogance or personal disrespect or because I wasn’t taking the subject seriously. The second mistake was to think I could be punished or intimidated into not behaving like that.
The irony is, in most of those situations I was desperately trying to make things go well and find a positive resolution. In most cases, if the teacher had made a point then backed off, I would have known what to do and things would have been better. Escalating the situation, just escalates the situation. I was never looking for a fight.
Of course, some behaviors can’t be changed or hidden no matter how aggressively they are attacked. A great difficulty with ASD, because it’s a spectrum and each person is different, is determining what each individual is capable of. And particularly determining what each individual is reasonably capable of. Doing something successfully but being miserable every day is not really a solution.
Good news: some ASD behaviors are mostly about appearance. They are harmless in themselves. Lack of eye contact, for example, can be annoying for neurotypical people but does not in itself mean anything bad or wrong is happening. Stims are often harmless. Something doesn’t necessarily need to be stopped or changed because it is unusual.
Something I don’t know what to do about is including kids with ASD in group activities. It’s miserable to be forced to participate in a group activity that is not working, but it’s also miserable to be left out. There’s a misconception that people with ASD are “antisocial”. In fact, people with ASD often want to be included, but may have difficulty figuring out how to participate. We may also tire out very quickly in group activities, which are a lot of work. Being accepted for who you are and how much you can participate at that moment is helpful.
Hopefully this helps someone. I’m glad that people are interested now and somebody is advocating for understanding. A bad experience in school can really effect how you see society, authority figures, yourself and life on the whole. It’s harmful if you are constantly in trouble when you are doing your best to get along with everyone. It can definitely effect your decision making and the path you take in life.