h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

Hi
Pleased to meet you, and I am very interested in autistic spectrum disorder, as my son {age 8} has Asperger Syndrome and is also mildly autistic.
I am particularly desperate for information as to what to expect when he is older.
I would be very grateful if you would talk to me about how you cope with a family member with autism.
Please do not give out any personal information about your brother, as it will be moderated.
You can mention his initial or just call him "brother".
Thanks very much.


~Galaxy Babe~

Hi,

My Brother T was diagnosed when he was 18 months. I came along 2 years later! In his case although classed as being autistic he does not conform totally, for instance he loves being with people and is very social. When he was little he was a nightmare, quite violent and prone to temper tantrums. He needed a set routine and if this was changed in any way he would not be able to cope and he would have another tantrum. This subsided as he got older but unfortunately he suffers from depression which is causing him more emotional problems.

How did we cope as a family - umm hard to say as we just did. I look back now and realise how difficult it was but you just get on with it. The hardest thing is putting up with other people and how they behave, T can be a little noisy and likes to say hello to people, which can be a little off putting.

Asperger Syndrome is on the Autistic syndrome, but raise different issues for an individual. Many individuals are in mainsteam education and are better able to understand that they are slightly different from other people. I would definately getting in touch with your local autistic society as they will have groups where children and parents can get together to talk about how they cope with life. It can be very liberating to meet up with people who understand the fact that your child has set patterns of behaviour.

I don't know where you are but there is the West Midlands Autistic Society as well as the National Autistic Society (who mainly deal with the south of England)there are also associations world wide.

Your son may find it hard to make friendships and may feel isolated. Meeting other people with Aspergers may help put this into perspective. Ensuring teachers are sympathetic and understand the disorder will also be helpful.

I am probably teaching you to suck eggs with some of this, I am sorry if I am. If you have anything you want to ask I will try and help.

Sem

Thanks very much for your reply.
My son is much better now than he was, at 4 he was a nightmare...I am pleased to hear they calm down with age!
He is on the go the whole time, nothing wears him out...
I've just got him into Cubs, but that took a lot of persistance on my part. Now he enjoys going!
I'm having family therapy at the moment, and I'm learning lots of new stuff.
I am also finding a "good behaviour book" is working wonders.
I'm in eastern England and there is a local branch of the Autistic Society whose newsletters I get, but I have been to the meetings and they are all couples who seem to have bonded more with having a handicapped child...so I stopped going.
I felt like such an outsider.
I'm single, you see, and every man I meet who may be interested in me, is soon put off by Andrew's obsessive ways.
He attends a special school, which has done marvels for him.
I get one respite night a month, which Social Services provide.
The highlight of my year is going to the h2g2 meet-ups.
I've made such great friends here...I don't know what I'd do without them.
I don't work as I am classed as Andrew's full-time carer, I get ICA & DLA for him, but as he gets older & he will require less care, I expect that will stop.
I have 3 older children but they are all adults now and have left home.
I guess I needed to hear that Andrew will not be the monster I fear when he is a 6' teenager full of testosterone and lashing out wildly, not in control.

Thanks for your candid reply,

~GB~

I am glad that my reply helped. Just remember it will get better.

T is currently in hospital, bless him hed thinks he's in Portugal! That was a holiday he really enjoyed and so he thinks that because he is happy at the momement that is where he must be!

I'm sorry the group wasn't of much help, the Birmingham lot are a hoot, really nice and kind and full of support. The main thing is you do have people to talk to.

Take Care
Sem

I felt isolated in that group, which is why I stopped going.
I'm having family therapy at the moment, which is helping.
What's your brother in hospital for?

I hope he's ok.

Hi again,

T is in hospital as he is suffering from depression. This is bad enough when you are "normal" when you have autism you can't express how you feel. He started to become violent and so it was decided that he was best in hospital. Bless him though he thinks he has gone to Portugal. For him Portugal holds happy holiday memories. He is in the best place, he has one to one attention and is being kept occupied, going swimming and painting.

Thank you for kind thoughts

All the best
Sem

and good luck with the therapy

I'm well into it now, this is the 4th week.
The therapist is great, and I've learned a lot, and my confidence is building all the time.
I am so sorry about your brother.

My son gets very stressed when he is out of control and I am learning the triggers and how to calm him.
I've started writing an entry for the Guide, on how to cope with a child with Aspergers.
I'll let you know when it's finished as I would value your opinion.


Please let me know how your brother gets on, and please give him my best wishes & hope he has a happy holiday

Hello again,

T is still very up and down but looks set to be coming home for 2 days at Christmas. Mum and Dad are delighted, I am not so delighted. I just worry that he may have one of his bad patches and lashes out. Oh well time to think positive!

I hope you have a lovely Christmas all the best

Sem

You too

--->

Happy New Year

May this one bring you peace and happiness

Love
Sem

Thank you, you too.
I'm considering sending Andrew to a boarding school for boys with Aspergers Syndrome.
Last week at my parents home he tried to throttle me.

He's getting too strong for me to handle and he's getting taller and stronger as he is growing.
He's almost 9 and I can't even imagine what he'll be like in a couple of years he'll be as tall as me or even taller.