Advice re son I think may have Aspergers

[Mummysruleok]

My ds1 is 14 and I think he may have Aspergers. I have never tried for a formal diagnosis as when he was younger for a long time we just thought he was difficult and a bit different.

We learnt how to manage our lives so that we avoided situations that we knew would be stressful. Nothing was ever mentioned at school as he was able to go through school without too many problems (now with the benefit of hindsight I can see that some of the few issues he had can be explained). I wish I had had more of an understanding of why he behaved the way he did when he was younger as I spent years blaming my parenting skills.

We rubbed along ok until the start of highschool which was extremely distressing and he really struggled to make the transition. The fallout from this was awful and was what prompted me to see the GP who referred us to CAHMs. This was helpful as when I described my son she suggested he may have Aspergers. It was as if the penny had finally dropped and as my understanding of him grew I altered my expectations. He was so much happier and settled, school had improved, he had a few friends but was happy with this. again I didn't push for a formal diagnosis as he was more settled and is desperate not to be seen to be any different.

Unfortunately, this school year has been a different story. He is being bullied at school but refuses to name the people involved. We are incredibly supportive at home and make lots of allowances for him but as he is unhappy at school his behaviour at home is becoming more and more difficult.

He can be so annoying and 'winds up' his younger brother and sister - cannot read the signals even when they are quite obvious.

I have spoken to school on numerous occasions and told them about the anxiety issues he has but have not mentioned aspergers as this has never been confirmed.

He can be so infuriating and demanding but is the most wonderful boy who would just love to be at home with us and not have to face the stresses of school life.

So sorry this is so long (this is the first time I have really said all of this).
The reason for my post is any advice on how to support him through his teenage years and how to manage his behaviour (doesn't seem to respond to anything - we can talk for ages and he will understand what I am saying about his behaviour then he can leave the room and do exactly the same thing!)

Is a formal diagnosis the next step? I am concerned that the stigma he would feel would make hi1s situation worse.

If anyone has got to the end of this, thank you and any thoughts greatly appreciated.

My son sounds exactly the same as yours! Schools have been telling us he's 'different' since he was 3 (he's now 14) and I have carted him all over the place trying to get a diagnosis - CAMHS, paediatrician, ed psychs, psychiatrist. Diagnoses range from atypical autism to a mild form of brain damage to Asperger's.

The Asperger's diagnosis is the most recent and was given by an ed psych. However, the CAMHS clinical psychologist told us the NHS couldn't accept this diagnosis because of the differing ways in which ed psychs and clinical psychs do their diagnosing!

Life with him is tough as he does tend to rule the roost with his tantrums and irritating and unpleasant behaviour, and there have been countless minor problems at school. In fact he has been suspended this week from his new (senior) school for persistent annoying and unkind behaviour towards others. (Exactly as you say in your post - he knows how to behave, shows remorse, but can't stop himself from repeat offending).

He was badly bullied at his last school by an older boy - ended up in hospital having repeated seizures after being hit over the head with a hockey stick.

What am I trying to say…? Try (hard) to get a diagnosis, but even if you do, don't expect people to understand or be particularly helpful. One comment I had at his last school was "Well, he's not like any other child we've ever known with Asperger's"! As far as stigmatisation goes, my son was told by the clinical psych that he was on the autistic spectrum, but she told him that lots of other famous and clever people were too (Google it!). The results of his ed psych testing have been very positive, showing him to have a very high IQ and some other excellent scores. He takes great pride in these (which can nudge towards arrogance sometimes, unfortunately).

One last thing to know. The term Asperger's Syndrome has been dropped by the professionals in America and is going to be dropped here too. It has been replaced simply by a diagnosis of being on the autistic spectrum, with the idea that treatment should be tailored to each individual as they will have vastly differing needs.

If your GP is being obstructive (one told me that the NHS is there to deal with physical problems, not mental ones, which even I have a certain sympathy with) then contact the National Autistic Society. They have lots of local branches.

I feel like I am an expert in all of this, and at the same time completely ignorant. I spend a lot of time fighting for (and often with) my son and don't seem to get very far.

I don't often reply to anything on here, but your post struck a chord. I wish you the best of luck with everything and would be very happy to help in any way I can. I started blogging about the up-sides of life with him (but haven't done a post for ages) - you can read it at www.talkhealthpartnership.com/blog/category/health-conditions/asperger-syndrome/

Thank you so much for your reply. It is my first post on here and I really appreciate knowing that other people are experiencing the same problems. I will have a read of your blog as I know how important it is to try and look at the positives (easier said than done though). We go through spells when life is much calmer (not for long and not very often) but as you say he does tend to 'rule the roost'.

How would a diagnosis help do you think? He would hate for anyone to know as he will not acknowledge he has any problems (although I suspect he knows and we have had lots of discussions about it).

Have considered changing schools but he reacts badly to change and I think the distress of a move could be worse than trying to resolve things where he is now.

It is very demanding isn't it? Since he has turned 14 we have popped out with our younger two for a couple of hours and I cannot believe how easy it is to do things, from the car journey to the supermarket shop, who knew!!

Thanks again, may get in touch at some point if that would be ok.