Advice needed;Should I let school register my AS kid or not?

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Dear All,

I'm new on this community, and looking for some comment/ advice concerning AS and children.

A bit of background. I am in my late 30s. I have always casually suspected that in today's world, I would have been considered AS. I was one of those kids who didn't care about what the other kids were doing, and kept my own company while developing a deep interest and knowledge in a field of science. Adults thought I was great, although I was a lousy student; other boys just thought I was weird. Interestingly Hans Asperger's nickname for AS children 'little professor' was always applied to me especially by teachers.
As a general rule people respect my abilities but don't instinctively like me. Social contact remains at the 'acquaintance' level for years. I get on fine with people on a superficial level but that's enough for me (and usually them). Usually I am most comfortable when talking about my area of expertise.
However, I became a successful scientist and married another scientist who is probably even further on this road than I am (I know, I've read Baron-Cohen's papers on systematisers marrying each other etc.!)- We sit up all evening with two computers and two microscopes- no problem. Actually I am by now totally comfortable with the fact that I can indulge my interests, and live my life independently of the world of celebrities, socialising, team sports, discos and other 'boring' things.

So, this brings me to my question: I have 3 kids. 2 of them are completely 'NT'. The middle one, now 6, is pretty much exactly like I was at the same age. Not surprising I suppose. He is exceptionally intelligent, but, well, doesn't empathise, doesn't show much emotion, and is a little 'lost' in the world, swinging between hostility and self-contained activities- sound familiar? Well, the school is busily trying to put him on the Special Needs Register, label him as Aspergers, etc. etc. 30 years ago no-one saw anything in me but a very bright, 'different' and slightly difficult child, but now with my son they want to label him up, and I am not sure if it is the right thing to do. I have two fears- one is that he will be treated with suspicion as if 'disabled' by the ignorant mass, the other is that the label will allow him to justify and indulge (rather than learn to control) some of his anti-social tendencies (not the passive ones like not wanting to go to the disco- they are fine- I am worried about licencing the active ones like rolling around on the floor having screaming hysterics)!

So to summarise, I have a child who shows in my opinion very mild AS characteristics, exactly like I did at a similar age. I feel at 38 that I did OK without a label or any special attention (though teenage times were difficult), and I am afraid that the School's desire to treat him as something different, however well meaning, might harm rather than help. Many people on this group are young enough to have been at school when AS was diagnosed, or may have kids. I would be interested in any advice or comments.

Last edited by nemonyx on 06 Jan 2009, 10:43 pm, edited 2 times in total.

I was the exact same way at that age. Mild AS characteristics. If I had one wish about my past, I wish I would never have been officially diagnosed. It ruined everything. It was like, "Hey, I'm AS, I can just let go and its OK" It's not OK. I can only imagine how my life would have turned out had I never been diagnosed. My dad probably has something like AS, and he always did well in school and makes 200K a year. So I say no, don't get a diagnosis. The school is only worried about covering their asses. all they care about is him doing well on tests so they can get more funding. If he gets diagnosed, it makes them look better. That's just my two cents.

I am 3rd generation AS, that I know of. I'm weird, my father was/is weird, and so was his father. So when my dad saw the troubles I had growing up, he recognized himself and didnt think too much about it. So far, I think I am the most autistic in my family, at least more then my father.

All that to say, I didnt get any special education, or treatment growing up. I didnt get any labels (mostly because the label that fit me didnt exist). Yet I still turned out alright, at least from my point of view. If your son is bright and can 'get by' without any extra assistance, then you may be wise to forgo the official special education route. In some schools, the special education is actually better for people with AS and very helpful. But in the unfortunate majority of cases it is nothing more then stuffing all the 'problem' children in the same room and asking the government for extra funding. Getting your child into special education when he doesnt need to be there can be more problematic then just going with mainstream schooling.

That being said, there is a difference between being smart, and enjoying your life. Both my father and I were very smart and skipped a grade, but we were both miserable in school, mostly because we were trying to fit into a world that wasn't designed for us. I would recommend getting your son diagnosed now, and telling him about it. While I didnt need any extra help to get good grades school, I was fairly miserable, with no explanation as to why I was different. Knowing why I was having social problems, and perhaps some useful advice about how to address those problems would have been much better then my approach, which was failure followed by depression. Being able to better understand himself, and be accepted for himself(problems and all) is much better then acting like nothing is wrong and hoping he figures out how to adapt by himself.

I can't tell you what the affects are of knowing about your AS from an early age, because I haven't experienced it. But I can tell you that my life (particularly my childhood) has been full of confusion, and learning about AS and how it relates to me has definitely explained a lot. I only wished that I could have known sooner, it might have saved me alot of confusion and depression.

So in the end, I guess I would have to say:

If your school can provide you useful help without many drawbacks, then go ahead and get him help. But if your school doesnt have any good help, then I wouldnt bother signing your son up.

Do however tell him about himself and help explain things to him. If you dont tell him what is going on, and why he is different, then he is going to try to figure it out on his own. Without the answers he may conclude that he will never get better, and life is a hopeless cause with no friends, and that isnt the correct answer.

As for using AS as an excuse to get away with bad behavior, that only works if you let it. For example, when I was younger, my brother would beat me up whenever he was angry. If I complained about it to my mother she would just say 'O he is just wrestling with you like boys do, dont be so sensitive'. So my brother got off easy apparently because he was male. If you likewise allow your son to act inappropriate, and dismiss it saying, 'O hes just being autistic', then you will have a problem. But simply telling your son he is different and may have problems doesnt give him an excuse to act improper.

I don't have a diagnosis (but I'm pretty sure that I do have AS) I have 2 children that are diagnosed, PDD-NOS, and autism. I'm wondering why the school has asked to educationally label your son with AS? From what I've seen it's usually the polar opposite. They usually don't want to have to recognize any sort of disabilities, or differences, because it actually can cost them lots more money in therapies, paras, and interventions. Even when a child has been diagnosed by a medical doctor with ASD, the school does not have to recognize it if the diagnosis doesn't interfere with academics. Educational diagnosis, and medical diagnosis is two completely different things, used for two different purposes.

My 7 year old son is what most would consider high functioning. He requires very little in the way of therapies. He does get a picture schedule, and a working basket. Those things help him know when, and what is going to happen, and how much work he has to complete. These things help him to not have tantrums in school. Should he have a meltdown, they have a designated 'take a break space' that allows him to go cool off for awhile. He rarely needs it, but I'd rather him use it, then just be seen as an out of control, non-compliant brat. He also attends a group for social skills. This is something that would have been very beneficial to me as a child. All in all, he probably spends about 45 minutes ( most of that being for speech therapy) out of the mainstream classroom every week. For my son, the benefits far outweigh the negatives as far as being labeled.

Edited to add: Scratch that whole part about educational, and medical diagnosis. I just noticed that you are in the UK, and the educational laws are different there then in the US.

I don't have kids - but I'd say that removing him from mainstream education is an extremely drastic step to take.
Other than the educational fall, it'll leave him much worse equipped to deal with the real world - simply because his exposure to NT society amongst peers will be massively reduced.
Those are two very good reasons not to remove him from regular classes.

There's nothing to stop you getting outside help to deal with the more difficult, autistic elements of his behaviour and conduct.

To my mind, shoving him into special ed' is really kinda giving up on him.

I would recommend having him diagnosed (it's better in the long run to know why things happen to you), but I would definitely not recommend special education.

Every attempt to put me in any sort of help or special education I fought tooth and nail, because I wanted to be normal and treated like everyone else. I think this was much better for me, as it forced me to learn better social skills, and probably prevented me from getting overly obsessed with my AS and possibly excusing bad behaviour with it.

I was shoved into Special Ed, and I hated it. I wasn't challenged enough, and I felt that the teachers were trying to give me help that I didn't need. I felt like a loser from the grades 1 to 7. I've enjoyed high school more, because I was mainstreamed, and I felt that I was being challenged.

See, that's an example of an inappropriate program. If he is exceptionally, standout bring you'd be looking for something like what's called here (Alberta, Canada) "double coded". I don't know if there is such a thing, there is here where we live and I know there is in some states. Basically it is a recognition that he's going to excel way beyond normal in some [academic] areas and lag in others like social, etc. so he gets Gifted types of academic challenges where appropriate.

Tossing someone in sink or swim, without guidance, is also seriously risking them feeling "like a loser". This board is brim full of people that have gone through that. Your son isn't you or your wife and his circumstances at school could easily not mirror yours because he goes to school with different people. If you actively address the pitfalls of the label while taking advantage of it that's just playing the odds smartly.

Again, you are going to have to try judge what difference this is going to make at your son's school(s). Ask what this would mean, in hard specifics. Don't let it go on flower speech or feel-good statements. Getting hard commitments and written down. That's the info you need to make this decision about the official status at school.

I am going to answer by not giving you an answer because, well, lol, "it depends."

Which means, that whether or not your child will benefit from a label at school will depend on the school and on the child. How well does the school adapt to children of different interests and abilities? How individualized is the instruction, and will the school make accomodations for all students who appear to need them, or only for students who have a label?

My son has a label, but it's a school use one and not a medical one. In our case, it was needs at school that drove obtaining the label. We had an obviously very bright child who could not suceed at school, and that disparity was obvious to him, and was driving him to check out emotionally and dislike school. It turns out much of the problem comes from a co-morbid condition in his joints, that makes writing painful, but without a special ed qualifier, the school would not give him OT and would not give him any accommodations like reduced writing assignments. We wanted to figure out why he couldn't write, and that couldn't be figured out without a special ed evaluation. So we got one.

My son, now in middle school, gets OT through the school, is allowed to type instead of write, receives speech therapy (social skills and pragmatic speech), and attends all advanced classes. Without the special ed qualifier he would not be allowed in the advanced classes because of his weakness in physically writing.

As for how the child gets enabled, we've found it really easy to stop an accomodation or service that we don't think is necessary. Obtaining them - that is where there can be a fight. One current example would be that the school is talking about voice software for the writing issue, and I have resisted it, because I think my son is capable of learning to type fluently, and he won't do it if he has voice assist. My preference is to cut down assignments in the short term to a length he can type out within a reasonable amount of time at his current speed, but THAT they are resisting. Makes no sense to me, but this is life in the school system as most parents of AS children know it.

So ...

Take a careful look at your child's skills and weaknesses, and make note of what his potential roadblocks in education might be. Realize that the schools he will attend are different, and have different attitudes, than the ones you did. Realize that your child has a different temperament, and that obstacles you took head on may not come out the same for him. Know your child, and know your school. Then decide.

ps - there is also a parents forum at this site where education issues tend to be front and center.