asperger disorder.

[Tiff]

i have just joined mumsnet and read some of the discussions with interest. My son is now 8 years old and although we knew from birth things weren't right he has only just been diagnosed with ADHD, asperger and dyspraxia. It took years of seeing child psychiatrists (who blamed bad behaviour), psychologists(dsyfuntional family) before i finally had to go private. I took him to see a paediatrician who finally listened to all i said and made the diagnosis.
my son has been put on medication and although it is early days we are noticing a difference. i realise that not every child needs the medication and some parents are reluctant to try it, but my believe, when you have a child like that is to explore every option.
we have found that as far as diet is related he has to avoid 'E' numbers especially colours and we have started to look at organic foods very closely.
I would just like to tell parents going through hell with a challenging child, Don't GIVE UP, at the end of the day only you can fight for your child.
does anyone else have any experience of a child with multi- conditions or asperger and if so do they have any tips they would like to share, also if you just want a chat after a bad day, get in touch.

Hi Tiff, My Mum has just completed and passed a course looking at autistic spectrum disorders (she works closely with autistic pupils in a school)- I don't know if you're already saturated with reading material, but if you like I can get you a list of some books she has used? Let me know...
Apparently there is some strong evidence to suggest dairy products can affect the behaviour of some autistic spectrum disorders, again I can find out more if you like....
Well done for getting recognition for your son's conditions, it's a shame that you did have to fight in the first place but it must feel great for you for your son to be finally given the correct treatment...

Tiff, it looks like you've had a nighmare few years tryng to get a proper diagnosis for your son. I'm so glad things now working out for you both.

Reading your message, you seem very sure, quite early on, that your child had more than the usual behavour problems.

Can I ask you, what made you so sure of this? - And I understand if you don't have the time to reply to this - I'm sure lots of separate things combined to make you feel the psychiatrist and psychogist had got it wrong, and motivated you to persevere until you found a correct diagnosis.

Tiff, my son has dyspraxia and possibly dyslexia - I've never heard of dyspraxia going hand in hand with aspergers though - is that unusual? I have a friend whose son has aspergers and there are a lot of similarities but some definite differences.

One of the things we've been successful with is Occupational Therapy - our OT says James has sensory integration dysfunction - in other words he finds it difficult to cope with the sense sensations that come to him from both inside and outside his body.

I think the thing I find hardest at the moment is that you can't get J to do anything functional (put shoes on, brush teeth) without repeating it umpteen times and even shouting loudly. Sometimes giving instructions looking directly into his eyes and speaking slowly works (and sometimes it doesn't!).

Tigermoth, I think you just know when something isn't right although it's hard with your first as you don't know what other children are like. But J never played like a 'normal' child when small would never settle and flitted from one thing to the other.

Tiff, my son is also 8. What reading have you done, I'll look out my list of books. Have you joined Dyspraxia Foundation?

Tiff, my son has dyspraxia and possibly dyslexia - I've never heard of dyspraxia going hand in hand with aspergers though - is that unusual? I have a friend whose son has aspergers and there are a lot of similarities but some definite differences.

One of the things we've been successful with is Occupational Therapy - our OT says James has sensory integration dysfunction - in other words he finds it difficult to cope with the sense sensations that come to him from both inside and outside his body.

I think the thing I find hardest at the moment is that you can't get J to do anything functional (put shoes on, brush teeth) without repeating it umpteen times and even shouting loudly. Sometimes giving instructions looking directly into his eyes and speaking slowly works (and sometimes it doesn't!).

Tigermoth, I think you just know when something isn't right although it's hard with your first as you don't know what other children are like. But J never played like a 'normal' child when small would never settle and flitted from one thing to the other.

Tiff, my son is also 8. What reading have youdone, I'll look out my list of books. Have you joined Dyspraxia Foundation?

Whoops

Hi, thanks to all those who repled to my message.
Lizzer, i would be interested in hearing about the books your mum has read and also any links to dairy produce, thanks. As to what we felt was wrong leading us to perservere with getting treatment, this was my 2nd child so there were differences in development, speech, walking and play. also not so much the fact that i felt the psychiatrist and psychologist didn't help it's more they would only look at their speciality, and then say o.k this is wrong now go and deal with it, there was no help to follow.
Roglyn, if it's any help, here are some books i have found helpful:
asperger syndrome,the universe and everything, written by kenneth hall an 11 year old with aspergers.
understanding adhd by christopher green.
also on the internet have a look at:
www.asperger-syndrome.com
www.asperger.org
www.nas.org.uk
www.autism.com
there is also a fantastic support line for parents run by parents called parent to parent on 0800 9520520
that's all for now but i hope it helps. will 'chat' to you again soon.

Hi, My son 26 month old son has language delay and some red flags for autism (like not pointing although he's just started, and looking at things using weird angles); although he's not bad enough to need further investigation. I'm currently investigating the diet options- some people have had very good results using a casein (in milk) and gluten free diet. The uni of Sunderland will run a test on urine which tells you whether or not the diet should help (basically a lot of people on the autistic spectrum don't break down casein and gluten properly- they are left with morphine like proteins that enter the blood stream. I would imagine that that's the milk free diet you're referring to. The National Autistic Society have a link to the Sunderland web site and guess what can't find their address! You should be able to find it easily on any search engine google.com is good. I do have the telephne number of the NAS- 020 8451 5865. HTH

Tiff, will get back to you very soon with a reading list - sorry, my Mother has just gone away on her hols....!

just read your 'chats' below, I see this area hasn't been visited for several months, but I'll try anyway!

My 6yr old son has Aspergers Syndrome, we've struggled down all sorts of routes, discovering that cows produce was causing a few problems including his asthma - (2yrs later back on all dairy produce and no return of symptons). Many artificial additives cause him extra problems... like increased aggression or hyperactivity, so we avoid all of these, but the the only thing that has made a real difference is help from a registered homoeopath. She has improved our lives ten fold, I reccomend giving homoeopathic treatment a go!

Kip - Hope you don't mind me asking (if you read the thread on educational psychologists, you'll know why!) but what was your son's behaviour like prior to him being diagnosed with Aspergers? I'm particularly interested in knowing whether he was physically aggressive towards other children, aswell as being unable to relate to them generally. Also, what homeopathic remedies is he taking, what changes in him have you seen, and was your homeopath specialised in this sort of problem in children or just a general homeopath? Sorry if this sounds like twenty questions!

Chanelno5, my friends child is treated with homeopathy too but your sisters child would need to see a homeopath as homeopathy treats the whole person rather than the symptoms alone; what works for one individual may not work for another. However, homeopathic remedies have hlped so it would be worth looking into this for your nephew. Also, can I add the little boy I have been referring too was immensely aggressive to other children and could not deal with any situation that involved anything other than one to one. Like many autistic children he is very precocious. Hope this helps. Winnie x

maryz - Sorry to hear about your problems and the on-going battle with the school. That is the trouble with Aspergers, it is not widely known about and can too easily be misinterpreted as anti-social or 'bizarre' behaviour. I'm definitely around to offer you some support, but some of the others do have more first hand experience so will be able to advise you more. Good Luck and keep us posted!

Son- now 9 cried from birth-and developed as per the book and walked at 10 months.Felt 'never' played with 'real' toys-more interest in tipping toys out and piling up the plastic storage boxes than wot was in them.hated puzzles.had to 'strap' up vcr,fridge and hi-fi with luggage straps.loads of words but didn't string them together till 3yrs- family comented on his strange cry as baby then his 'foreign' accent as toddler-now speaks constantly in monotone and with no interest or idea that he's either not being listened to or that he's talking about things noone knows about (usually computers)only imaginary play was building 'inventions' using toys and household things in ways they weren't meant to be used (ie mops and brushes as levers-and telephone / headphone wires stretched from one side of the room to another.) discovered playstation at 4yrs and lived and breathed 'crash bandicoot' game for 2 years. always loved fans, traffic lights, and switches.still 'mouths' almost anything and spins anything that he can- has many 'fiddle toys' as he contantly needs something 'safe' to fiddle with- will even bite playstation wires and controller if not supervised.can't ride bike-hates climbing frames- has only been ok on slides for the lAST year-hates food which is smooth and has lumps- ie yogurts with fruit peices-will still heave -cannot use knife at table-the list goes on.
I'd love someone to give me an idea of how the paediatricians report will read- we're waiting for it any day- i understand the idea of the 'spectrum' ... she used the D.I.S.C.O format- but will that for example state things that he has on the spectrum/or other related things ?,,,as i suspect that has a blend of dyspraxia,sensory probs which along with his ADHD (which i now understand was his way of coping with 'our' strange world he has to endure) kind of makes him a very interesting and unique lad!
or.... will it just say he has Aspergers??
thanx!

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depends on the paediatrician mrsforgetful. My son has a dx of "communication disorder on the autistic spectrum". In the States I suspect he would be PDD-NOS (pervasive developmental disorder not otherwise sepcified). As your son is 9 he may well get Asperger's (it's the right age for an Asperger's dx). If he gets Asperger's they probably won't say dyspraxic as that's seen as being part and parcel. And here is the advantage and the problem. The advantage- Asperger's will earn him help at school and probably allow him to get a statement- more so than straight dyspraxia. But he won't necessarily get any help for dyspraxia (whereas he would if he was "just" dyspraxic). So it's swings a roundabout really.

My son has very bad fine motor skills although his gross motor are fine. Although autisitc his main problem really is language- far more than anything else. We don't really get much help. Things I've ufnd useful are the aut-uk email list (type into google and you should get there). See if you have any local groups for autism. My best support has come from friends with children on the spectrum. There are a couple of people I talk to almost every day- and it helps. If you're near Plymouth let me know as I have started up coffee mornings down here for parents with children on the spectrum. Next one is next Friday.

mrsforgetful, my son sounds very like yours. As a baby he had a very deep cry, and once he started to talk people often commented on what a "boring" monotone he used.
He was diagnosed dyspraxic "in passing" by a paediatrician at the age of 5, who knew there was something wrong with him but didn't know what!
According to a website checklist I tried he can't have aspergers because he used to point as a toddler, but all the other signs are there. He is "odd", and eccentric, and will talk "at" you, rather than to you. He prefers books about technical things and facts, and doesn't read fiction. As a young child he was obsessed with cars and other mechanical things, and would find "odd" cars hilarious (he saw a 3- wheeler when he was 4 & was in hysterics for ages..).
He is now 15, so I don't know whether there is really any point now in asking for him to be referred to check for aspergers, especially as he is already having to attend a hospital outpatients clinic because of delayed puberty & insufficient growth.
My middle son has ADHD & apparently all these autism spectrum disorders are linked & genetic.
Does anyone have any ideas?

tallulah he can stil be AS despite pointing as a baby. (Do you remember at what age he pointed?) My autistic son points- he just did it later and less often than NT (neurologically typical) children. Being late to point just goes with language delay which tends to go with autistic spectrum disorders, but AS kids can be early to talk. Dyspraxia and AS overlap. A dx could be worth getting as it allows access to certian benefits and would provide more access to things ike social services. if you think he has problems and will need a lot of help I would think about pushing for a dx.

tallulah- the sense of humour certianly sounds autistic!! As a baby my son would spend hours looking at books upside down absolutely killing himself. He's now 3 and a couple of weeks ago was absolutely curled up laughing at a mirror on a door in a supermarket.

Thanks for that jimjams. Thinking about it I can't actually remember when he first pointed. He first spoke at 14 months old, having noticed a teddy on a shelf in a shop. ("ted'n". I thought he pointed to it as well, but now I'm not so sure. He was certainly a very "good" baby, unlike my other 3.
How do I go about getting a diagnosis, especially at this late age?