How can I best help an autistic person?
How to help...
- ... at home
- ... at school
- ... at work
- ... at play
This is the page where the afflicted becomes the psychologist and dishes out the advice on how to help the autistic person in various paths of life. The following actually comes from my own experience of how people helped me, or how I wish they'd helped me - depending on what they did! Consequently, some of this may not work for the AIYL (web-speak for "autist in your life"!), but I would welcome other people's ideas on how they helped their AIYLs... just send your comments to me, via e-mail - the patch to which is at the bottom of this page. Also, I might be able to compile a list of links to sites/pages where you can get info on helping your AIYL.
The autistic person at home can be a pain in the arse, I'm afraid, and it's not as if we can help that! Especially in families where we are the only autistic persons there. This is because, even in a family situation, the autistic person is alone. A big clue to why this is comes in the fact that it is very difficult for us to feel related to people in the ways that other people do. This is largely what Kanner meant in his 1943 paper on what he referred to as "autistic disturbances of affective contact"... affective means emotional. As a consequence of this, you cannot really expect the AIYL to interact with the family in the same way that his (or her) non-autistic siblings - if there are any - would. Some people believe that you can help an AIYL to become "normal" by encouraging them to keep bashing away at making friends with people, but this is grossly inappropriate: autistic people have a developmental difference in the way in which the "telephone exchange" bit of the brain is wired up. Imagine that you are a building with a PBX (private branch exchange) and you have, say, twenty lines to handle calls. But other buildings around you have as many as thirty or forty lines at their disposal. And your building is one of the 1.5% of the properties that has this call-capacity problem. You will be unable to handle all the calls that a 40-liner can handle at any one time, even though it may only have 25 incoming calls at that time. It has 15 lines free for information transfer outwards. The autistic person is like the 20-liner, in that there is this reduced capacity for information transfer in both directions which means that communication is difficult for him (etc). So, if you are going to help your AIYL, you need to understand that he (...) will not be able to cope with the amount of info-processing work that a "normal" can handle. Trying to get your AIYL to deal with it all generally causes him distress, and this should be avoided at all costs. This is one way you can protect him from having mental health problems. This is an area of work I hope to put into my Ph.D. - if they allow me to do one!
If you really want to help your AIYL, the best way to do it is to suspend completely any judgements you would make about a "normal" doing what your AIYL is doing. For example, if you saw a "normal" getting angry at someone for no readily apparent reason, you would (possibly quite rightly) hold a rather damning judgement on them, largely for being so bloody petty or whatever. Your AIYL, on the other hand, because of the i-p skills reduction, will probably be confused and/or frightened by whatever events lead up to the outburst. So suspension of judgement is important. It may have been that, as I have seen happen, your AIYL has been challenged in too direct a way about something he did. Confrontation makes things worse for him and for others: for him, because you run the risk of further alienating someone whose relatedness to his environment is already shaky. For others, you run the risk of creating a rift between him and them... your AIYL, remember, has an i-p problem, and one person confronting him directly can damage not only that relationship, but also any others that your AIYL is in. Indirect challenge is far better - your AIYL will feel less threatened, and so will be better disposed to being amenable regarding a solution to the problem behaviour.
Your AIYL's first day at school can be traumatic or he can take to it with no distress at all. It depends on the AIYL and his personality. However, what happens thereafter is not necessarily so happy. It is usually by the time your AIYL goes on to secondary education that his differences are noticed. By then, most kids are going through puberty and so is your AIYL. But your AIYL will keep a linear development, whilst the so-called "normals" go round smashing telephone boxes or TWOCing cars (taking without consent), or whatever. Your AIYL has always been a sexual being... that's about all that Freud was right with. He (your AIYL) will therefore take an interest in sexual matters. It was, in my case, very much an academic pursuit - I'm afraid I don't have the ability to "chat up" women... but I don't feel disadvantaged by that! Your AIYL will probably get stirrings - again their resolution might be pursued academically rather than practically. Unfortunately, because of his (...) being different, you can expect depression at failure to keep up with peers (if there is a desire to do that). It would be bad to try and socialise your AIYL too much, or to try and get him to meet more girls (say!) - you could run the risk of overfacing him with a situation that is - in my experience - already a very threatening experience. The thing that happens in many cases of autistic people going up to secondary school is that this is where the bullying, teasing, negative discrimination and other forms of abuse from the AIYL's so-called peers begins. This abuse can also include (as it did in my case) sexual as well as physical and psychological abuse. And for the AIYL to have to go through this experience in such an intimidating environment (remember, even "normals" are scared on their first day at a new school - how do you think your AIYL feels, given the i-p skills difficulties I mentioned earlier? Your AIYL will need extensive support at home and at school for a long time. But how can the school help with your AIYL?
The school can, with minimal expense, do quite a lot! Much of the problem is the attitudes of the teachers towards issues of individual difference. In many schools, it has been my own observation that most teachers just do not have the knowledge base that would enable them to help your AIYL in that school. Many teachers refuse to accept that your AIYL's condition exists... this is, if you have a confirmed diagnosis, an abuse of your child. It is possible for you to argue that the teacher's refusal to accept the findings of a better qualified person than he/she may be based on a few things, one of which may be the purpose of abusing his/her power over your child - I do not mean that every such case is like this, but we know that many teachers refuse to accept the fact of dyslexia as a special educational need, let alone any autistic condition that does not my your AIYL look like Rainman! If a teacher refuses to acknowledge your AIYL's condition, then your do have recourse to law - but,as we all know, the law is an arse not fit for wiping (it doesn't protect as it should, and it is a movable feast at the whim of whomever is in power at the time). The things that the school can do include keeping an extra watch on your AIYL in case of bullying, and for other forms of abuse. Do bear in mind, however, that anything done to him () that is abusive is going to pose a serious ego-threat to him, and his abusers will be relying on the fact that he'll not dare tell. Also, remember that your AIYL will be singled out (as I was) for such abuse by GANGS of others, whose collective function is to back each other up against accusations of abuse. Your AIYL is not in a good position here, and - although I went to a mainstream school, and got my five or six "O"-levels (I am writing this as one educated under the system in England and Wales) - I can't help thinking that this was the wrong place for me as an autistic person. There was no support at all... they interviewed me for the remedial class because of my dyslexic difficulties, and that was all they could do; Barnsley Education Department are not the bset of ones to be autistic under (the official line is still "Barnsley has no autistic children." God only knows how a solid statistical likelihood can avoid a metropolitan borough completely is a bafflement to me as a mathematical physicist, let alone as a psychologist... but there you go!!! And I don't just single this LEA out to the exclusion of others. Very few LEAs will acknowledge your AIYL's condition because it costs money to do so! I believe that the American education system does have a more positive approach to autism, but I would need people stateside to inform me about their views on this. (My e-mail patch is at the foot of every page on this site)
At work, the AIYL has an inordinate amount of hard work to look forward to, since it is here that he is likely to encounter the requirement to be able to nototiate multiple interactions.... lots of interaction with lots of other people. This will generally have the effect of tiring your AIYL out quite badly, since it takes a lot of effort to maintain this type of interaction. There is also the serious (but very much underestimated) problem of stress for your AIYL... this has many upshots, including mental illness, and can even lead to severe immuno-deficiency problems in which your AIYL will most like remain in a physically weak state, unable to fend off microbial disease. In this situation, I would recommend that your AIYL only work part-time (say, on a three-quarter post) which would give him time to wind down after a hard day at work. Another point to bear in mind is that the more severely autistic person needs to have a structured environment for stability and ease of navigation through the day.
Another break.... I'm not on this computer for long.... back when I've more time....