Doubt over Aspergers diagnosis - help please

[jmb1964]

I have posted about our ds1 before - he is nearly 6 and was diagnosed with Aspergers a few mothes ago. Dh and I have both read the Tony Attwood book, and various other bits and pieces about ASD, but neither of us are convinced, and after 3 weeks away with him on holiday I'm beginning to worry that we may be missing something else (by going along with the Aspergers 'signpost' - thanks to jimjams for that idea).
The biggest problem seems to be his bad temper, and dh thinks that it may be that ds1 is just an angry little chap. But I don't think it's normal for a child this age to get SO worked up about things - if he is angry, WHY? Perhaps he might be depressed, or very anxious, for some other reason than ASD?
The Tony Attwood book barely mentions tantrums, though I've noticed they feature a lot in postings here. Does TA not mention them because they are not an attractive side of Aspergers (dh thinks this amounts to propaganda if so) or because tantrums are NOT a feature for most?
And how common is it for ADHD and ASD to appear together?
And does anyone have experience of seeing psychologists privately in Scotland? We are thinking of looking for another opinion, and I can't face trying again at the clinic we went to in May.
Then there's the whole diet conundrum... Ds1 has been unwell over the weekend with an upset tummmy, but has actually been a pleasure to have around. This might be because he is too poorly to make himself heard in usual ways - shouting, tantrums, attacking his sisters, etc., but it also occurred to me that it might be to do with him eating very little - normally he devours about half a loaf of bread a day..
So many doubts, so many questions, sorry to ramble on, but I'd be grateful for any thoughts from all you wise people out there!

Dear JMB1964, I know a few AS kids and tantrums can definitely be a feature, especially if things are not EXACTLY as they like. I have also believe told that it is quite common for children on the spectrum to become more anxious, tense and possibly aggressive atthe 7-8-9 year stage although not all do by any means (other parents, my Paediatrician, my own observation). Aggression is also linked to an inability to communicate and, although your little one may have excellent language, he may not necessarily be commmunicating as he would like or being understood as he thinks he should be. Does Tony Attwood point to any methods to build communication rather than language? I haven't read his book. I have a very good friend with an AS son so I will ask her about methods/materials etc, I know they use a lot of computer stuff. As for the diet, although I do not follow GFCF etc with my ASD son for various reasons, I have been told by Simon Murch at the Royal Free that better behaviour when eating less, therefore reducing gluten in a "fake" way, is a definite sign that the diet would be of benefit. Its a massive commitment and I have never seen any of my friends be able to give it up so it seems to be for life but, for those kids who benefit, it does really seem worth it. Its a lot easier to get hold of decent GF foods though than it used to be. Jimjams knows more about the diet side than I do so hopefully she'll pick up this thread. I'll post again once I've spoken to my friend although she may be away but I know a few others I can ask. Here are some Psychologists that other people I know have used. THe only one I know personally is Albert Reid who is very good and travels all over the place. I don't know where all the others are based but I expect most will travel too.
Albert Reid 020 74333069
Alan Willis 020 8202 9935
Adder 020 84800391
Rosemary Thornton 01372 464 371 [email protected]
Gillian Willis 020 8651 5334 [email protected]
David Urani 020 8455 3977 : mobile: 07958 733161

Half a loaf of bread-- see the Sunderland site and have a urine sample done. If your child has a leaky gut then going gluten free will make a huge difference. (FWIW my lovely, calm affectionat ASD on gluten turns into a raging, screaming, headbanging monster). Here's the link:

osiris.sunderland.ac.uk/autism/

Tantrums are common in AS children- especially younger children. Your DS is very young to have been diagnosed with AS, so that maybe why TA doesn't mention them so much. However tantrums aren't really a necessary part of the disorder- they're often the result of stress. So for example a common trigger would be spending a day at school. The child copes, but gets home and explodes. Another trigger for an auti type tantrum would be something being "not right"- and yes it looks like rage. I knew another child diagnosed with AS at age 5- and his grandmother described him as "angry".

ADHD and AS - very very common together. Watch "my Family and Autism" on BBC 2 on Wednesday- 9pm. All 4 boys in this family of 7 have some form of autism. Joe the second youngest also has ADHD. Luke, the 14 year old on the program has written a couple of books- one about being on the gfcf diet- and one about having AS- "freaks Geeks and Asperger's syndrome". I'd recommend it highly.

Another good book is "Learning to Live with High Functionig Autsim" by Mike Stanton (a parent of an AS boy who also works in a special school). I wouldn't be in too much of a hurry to lose the diagnosis- as it is very helpful for securing extra help at school. I don't know of any Scottish Ed psychs, but the national expert for autism in the ed psych world is Lisa Blakemore-Browm. She must travel as I know families who have seen her scattered around the country. I don't have contact detais but I suspect you can track them down through google. I think she's on the BBC2 programme on Wednesday. FWIW DH's find it very very difficult to accept any autism diagnosis- partly because like 99% oof the population they think that autism means no affection, and sitting in a corner rocking. It isn't- autism is about having a difficulty to communicate. The other thing to remember is that the triad of impairments- is just that- impairments. My son for example has a delay in imaginative play- it doesn't mean that he can't play imaginatively- he can, just not as easily as the average child of his age. he doesn't have any problem showing affection- just a lot of problems communicating (as you would if you culdn't understand language!).

Another common feature of AS and autism (and ADHD) is being either hyper or hypo sensisitve to things like taste, texture, touch, noise and smells. Does your son have any problems with any of these?

Hope some of this helps. I'd recommend watching the jacksons on Wednesday. The Mum, Jacqui really is amazing. Another route you could take to find out more- and hear other peoples experiences is to join one of the online discussion groups. I'd recommend Aut-UK for information. You'll get to hear quite a few examples of autistic and AS behaviour on there. I joined Aut-Uk and another site called chatters (currently full otherwise I'd really recommend chatters) pre-diagnosis and suddently I found a whole world where other children behaved exactly like my son! It was bizarre, but it did confirm my suspicions. Hanging around Aut-UK for a while may confirm it for you one way or another.

ooh Davros beat me to it. The diet is hard, but ime- the children who benfit usually benefit pretty much immediately- and the difference is so great the diet is a lot lot easier than having them on gluten iyswim. I would recommend having a urine test done first though, its big hassling change otherwise. I'd recommend marilyn LeBreton's book "Diet intervention in autistic spectrum disorders" (or something like that) as essential reading before starting the diet.

For Lisa Blakemore-Brown look here
Not really my cup of tea but you might find interesting. Another possibility is A Bridge to Learning, PO Box 28446, Edinburgh EH4 1WP. Tel: 0776-425-4059. Fax: 0131-332-3614. [email protected]
Latest "hot" book re AS is Autism/Aspergers: Solving the Relationship Puzzle by Steven E. Gutstein, PhD which I think you can get on Amazon

Wow! Thanks everyone for all your thoughts - as always I feel better about things already. I have a booklet from Sunderland now about the diet, which I intend to read soon, and I am about to go shopping on Amazon.
The idea of anger/aggression as a simple then habitual response to all sorts of things is a really useful one - dh even agrees with it, so that's progress.

Was very worried last night because ds had his first day of his 2 weeks at the local autistic society playscheme today. I had spent the evening naming all his favourite clothes (does anyone else find nametapes make them tearful?) and feeling awful about packing him off to a strange place with a whole load of people he doesn't know. But he can't go to 'normal' holiday activities, and his sisters, if not the rest of us, were sorely in need of a break from him, 4 weeks into the 7 week summer holiday. Anyway, guess what, he came back this afternoon having had a GREAT time, and impatient for tomorrow to come so he can go on the bus again. Big phew

Jimjams - yes, he does have some sensitivities about things, eg once screamed for about two hours because he fell into a rock pool at the beach on a coolish day and I didn't have a change of clothes with us. He also hates being dirty or sticky - they used to laugh at nursery because he was the only one he actually wanted his face wiped after a meal.
Language-wise, he has a huge vocabulary, and does use his words oddly, and sometimes wrongly. But sometimes wonderfully - one day on holiday I told him I was a rotten mother because his arms had got sunburnt. Several hours later, he must have been thinking about it, he said 'you're NOT a rotten mummy, you're very fresh'!

Dinosaur - I'd be interested to hear how the assessment goes tomorrow, and whether it helps.

Thanks again for all the interest and support.

JMB- my son is 9- diagnosed with ADHD at 7- Aspergers at 9- as toddler hated getting messy hands,used to get very angry and end up saying 'don't want my ears/hair/arms/legs'....later became 'don't want my playstation (fav hobby!!)/computer/p.c etc'- now has regular strops like a teenager rather than tantrums and will start telling us that he hates our house/schools/his bedroom (we redecorated it finally-he used to peel of wallpaper)his shoes/wishes he was only child....the strops go on and on!!!
we notice it when he's had late nights and his body is exhausted but his mind isn't- it can be a little amusing believe it or not and usually i bring it to a close by saying in a bright voice' jolly good' or 'toddle off then' and as these are 'cues' that he has learnt to associate with ending many different 'occurences' he will often give up- however he will sometimes put his left arm across his brow and get tearful- and this is our cue to be sympathetic- he rarely cries - so when he does this arm thing we know tears are imenent and crying in itself upsets him.other 'oddities' which i don't see listed for Aspergers are he puts lots of things in his mouth-he gives very wet kisses,won't 'wiggle' his loose teeth,breaks things due to his continuous fiddling-threads on clothes/shoes,wallpaper.I am looking forward to the BBC2 programme on weds 'my family and autism' as the 14yr old Luke reminds me of my son!!!- so am hoping when he talks that i will be able to play the tape back to my son and see if he 'bonds' as he is finding this Aspergers 'label' difficult to accept as he knows 2 lads also Aspergers and they are both violent and thomas is almost the complete oppisite- i have tried explaining how everyone is different etc ....but he cannot see it....so it's not just us mums that doubt the diagnosis....maybe the children do too!