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So what is it like coping with a child with Aspergers and what advice can you give?

(10 Posts)
Wills Tue 15-Jul-08 22:58:58

My dd1 (age 8 - year 3) is currently undergoing diagnosis for Asperger's Syndrome. Its been a shock but heck I'm sure most of you who read this thread will relate with that. We privately approached a clinical psychologist and had the initial evaluation done because I knew she was so unhappy yet she didn't seem to know why. We've now had an Educational & Clinical Psychologist involved and the initial thoughts are that whilst she is rather talented it looks as though she has Asperger's syndrome. Up until that report I'd never heard of Aspergers. The last year has been stunningly hard and I really mean stunningly and the school have been seriously crap! I've gone from a position a few weeks ago of not knowing what Aspergers was to "Oh My God" that's my daughter and that explains that she's not some self centered uncaring cow. We've been offered another school and thinking that it will offer dd1 a fresh start (she's been seriously bullied and know's she's different) we've accepted.

All these things are periphery. Knowing now what you know as a parent of a child with Aspergers, what advice would you give a parent just starting the road to discovery? We do not have an "Official Diagnosis" yet but given that she knows she's different we've decided to go for it so we can help her to see this in a truly positive light. Hope I'm not babbling too much but the last year has been hard and the last few weeks even harder and its been difficult deciding where to start in terms of asking questions because we know so little.

Thank you for any input you can give on this.

TinySocks Wed 16-Jul-08 06:38:58

Hello Will, my DS is not on the spectrum (he has a global dev delay), so I cannot help you, but I am not sure if you've seen this "recent thread www.mumsnet.com/Talk/1373/567562", amber explains it so well!
Good luck with the change of school.

amber32002 Wed 16-Jul-08 09:08:27

Tony Attwood says when his team assesses someone, "Congratulations, it's Asperger Syndrome!" It's a very controversial thing to say...some people find it patronising or bizarre, and not everyone agrees with all he writes, but he's the world expert and has worked alongside any number of people on the autistic spectrum (including me).

He sees us as being different, as being specialists, as sometimes having amazing abilities (not all of us, but some of us). He notes the loyalty, the sense of social justice, the honesty, the integrity, the order and determination. Unfortunately people get really caught up with the bad stuff - the behaviours that other people find alarming, the fact that we seem distant and rude because we've no idea what you're saying or doing. We can't see you. No, really. We know you're there and doing something, but what on earth is it?? All that hand and arm waving, and face contorting, and changes in voice pitch, and touching, kissing, hugging etc may mean nothing at all to us (or perhaps just frighten the wits out of us), so we miss out on 85% of what you're saying and doing, and get all the social stuff horribly wrong as a consequence. We seem rude. We don't mean to be. We want to make friends, but don't have a clue how unless we learn. I learned from books, like the Desmond Morris Manwatching one. It taught me what on earth the rest of the people were doing. I spent hours watching other people and matching off the behaviours in the book smile

Your job as mum is to give your child that chance of learning about the other people she shares this planet with, and how to make the world a safer place for herself. To be there for her when others aren't. To advocate for her when the going gets tough and we run out of words. She already has what she needs - a parent who cares and wants to learn.

Read everything you can. Try a book called "Freaks, Geeks and Asperger Syndrome" by Jessica Kingsley Publishers. Written by a teenage lad with an ASD, it's funny, and it says so much about our world from the youngest ages up to teenage years. Well worth tracking down a copy.

amber32002 Wed 16-Jul-08 09:09:32

Drat - sentence in centre should read "mum or dad" not just "mum"! Apols...

Wills Wed 16-Jul-08 09:42:01

Amber, you have in one sentenance described the really gorgeous aspects of dd1, loyalty, sense of social justice etc. Thank you.

She starts at a new school on Friday but we didn't take the decision until Monday just gone. Given how much she struggles with change and how much angst it will cause her prior to the event we've not told her. If I tell her she will work herself up to the point of being sick and I will never manage to get her in. This way at least she will be in there and discovering that its not scarey before she's had time to think (she doesn't have a problem making friends but does struggle to keep them). However it does seem an incredibly tough thing to impose upon her (she will get to go back to her old school for the last couple of days of term to say goodbye).

Am I making a big mistake?

twocutedarlings Wed 16-Jul-08 13:50:46

Hi wills,

Im Mum to a wonderfull 5 yr old little girl who was diagnosed with AS in July of last year.

She started school in september of last year, it quickly became apparent that she was in the wrong school for her. At this point she was happy to go to school loved her teachers ect ect.

The school was a very big primary school with very little experiance of children on the spectrum. I spent months researching and vistiting other schools across the area and finally found one that could meet her needs.

She moved there in April of this year and after a bumpy start is now doing very well grin.

DD knew that she would be moving schools 6 weeks before the actual move. This gave us the time to prepare her and deal with any fears this caused her. The move to her new school was handled very proffesionally by both schools, and she very quickly adjusted to her new routine and enviroment. She was given a photo album to help her prepair that contained photos of her class mates and all the staff. At the time we were given the option of a gradual move, (2 days old school 3 days at new one) however we decided against this, following the advice of her pead (who is a leading ASD specialist).

For my daughter to just move her with no notice, would not have been an option she simply would not have coped, it would have confused her to much, However your DD is older than mine so hopefully fingers crossed with cope ok, but personally i would tell her about it before hand, would it be possible for her to go and have a look around one evening while there are no other kids there, or have a look around the grounds.

Hope this helps and Good luck xx

amber32002 Wed 16-Jul-08 17:29:52

Wills, you're the parent who knows your child best, so I can't be sure. I do know that a sudden change that's as big as that and unannounced would have sent me into a spiral of horror. But your own child is another person with another personality.

I wouldn't have minded moving if I knew where I was going and what would happen. It's the level of detail we need that's the problem: Exact detail of what, where, when, what does it look like, what will happen, who will care about us.

Whatever happens, a happier school will be a good proposition for her, so I'm sure it will work out well in the end.

sarah293 Wed 16-Jul-08 18:05:57

Message withdrawn

Buckets Wed 16-Jul-08 18:10:41

Just wanted to say keep your pecker up grin, things can only get better from now on.

Would suggest you introduce the first day at school as a taster or practice day, for her to get to know the place and people, no uniform etc. I'm sure the staff won't mind playing along to some extent if they know the situation, ie not dropping bombshells and acting as if the following Monday is a given.

Wills Wed 16-Jul-08 19:22:20

Thanks for all the input guys. I agree that the more notice she could have had the better but this has all happened so fast. In the end dh and I have agreed that it would be better to tell her tomorrow evening. Its a case of knowing full well that handling the change slowly and carefully would be far better but its the fact we don't have that option. The new school are very keen to help but being the end of term there's only really one day where its going to be possible for her to go in and that's Friday. I am worried.

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