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.

I don't know where that winking face came from! Most inappropriate!

Tallulah- Sounds a bit like my ds1's first point- 22 months at some chickens with a "deedan". It;s now having a 13 month old ds2 pointing at everything in sight I can see the difference.....

Ds1 was such a good baby as well. I actually think that ds1 is more AS with a severe language problem.

Um dx at 15- not sure but I do now adults are being dxed. A good place to try would be the NAS helpline - you should get the website through google. You could also try speaking to the ed psych if your son has one - although they always have one eye on the lea budget.

Just a follow on- most Ed psych's wouldn't recognise AS from a distance of 2cm so maybe not your best bet- you could ask your GP for a referral to a suitable clinical psych. Try the NAS though.....

Its certainly worth trying to get a diagnosis no matter how late, because you have to think about the future.
THe oldest of my brothers has severe AS, which ha caused communication, learning (also has learning disability, seperately diagnosed), sexual, housing and violence problems. He is unable to live independently and has to live in a specialist centre where he can be cared for according to hi needs. But you have to bang your head off a brick wall to get the kind of help you need in adulthood, and in the end my parents just had to refuse to take him home again in order for them to find a place to house him - funny enough, when the last option was removed they were able to find suitable, excellent accomodation within 48hrs!
My DB will probably always have to live in ome kind of institution as, despite my parents telling the education & social work authorities for years that this would be a problem they were given no help in prepering him to live in the outside world. He is intensely ritualistic, manages to control diabetes which needs injections because they are at set times in the day but cant cope if the phone rings when he's not expecting it. Never gets in touch with you until he sees a car which has the same colour, 1st registration number and trim colour as yours, when he is on the phone in a flash.
I love him to bits, but totally understand where my parents were coming from by in the end just being unable to cope any more (he's been like this since he was about 18 months old) - and they also had other family members to think of - he can't be left alone with young children etc, and they have several grandchildren, nor can he be left alone in the house and both my parents work (my Mum as a teacher of autistic children - how she recognised it years before any HP would maje the diagnosis).
Sorry, have rambled on. The implication of AS are lifelong, and it is important to get as much help as possible early on to maximie the help that is out there. Hope I dont sound preachy, but that i the experience in our family.

JIMJAMS- Got 'official' diagnosis-Aspergers and ADHD. No mention of the dyspraxia element....no mention of the things he does which i've since found are dyspraxic behaviours---however thanks to your note about better to have AS than Dyspraxia as far as help at school and statementing i now rfeel that this is probably why the slant is towards AS! Th Paed knows i am filling in the forms (!!!!) ref the DLA and apparently its more likely that it will be awarded with the AS diag(???)Anyways...i agree the way all these things are linked and from my exp so far alot of the 'strategies' work well-regardless of which of the disorders it was designed! My attitude is that Tom is 'unique' and has always needed some form of 'help' so to me as long as this is recogised and he is happy then i will be happy too!I feel we are lucky as only those who take the trouble to really get to know him,really notice his 'odd' things- most see him as a bright child with his 'mothers non-stop chatter'!!What i feel worst about really is that at 9yrs he still only gets 1 birthday party invite a year (next door...Dyslexic with very similar probs...AS???) We live south of Bath(BA postcode)...so sadly cannot make your coffee mornings!The CAF sounds good and a friend with 4 boys (2 AS so far) is thinking of setting up a group - there's a year long waiting list for the health auth group.Wondered if you have any experience with the use of 'SOCIAL STORIES/ SENTENCES ? I found a few and have found them brilliant- especially at times when T won't stand still when talking or stands on siblings fingers or toys. My favourite way to 'discipline' (when appropriate!) is to kneel down (so T is taller than me) and then i whisper the 'telling off'- this usually works as he 'homes' in quickly to me as he finds it amusing that i am on the floor and it means that he does not have to look at me as he has the eye contact prob-he describes that i'm asking him to do too many things at once when i want him to look at me and listen!My husb is very reluctant to accept any of this AS/ADHD & refuses to 'parent' as i do- however we don't have too much of a prob as i am around most of the time-if we are awarded the DLA at the mid/high rate then i will give up my P/T job...and will happily be able to implement all the strategies to manage T's needs better.
TALULAH-Thomas pointed too as ababy- but never at passing cars etc.He only independantly used a 'pointing' gesture when he saw'familiar'things -never to get my attention- and if i pointed things out to him then he would find it hard to locate what i was looking at-he'd be more interested in my finger!Even now at 9yrs if we're in the car he never comments on anything he sees in the fields/towns we pass by-more interested in workings of wipers,CD player and electric windows.other thing i find he's not very AS is the usual need for routines and order- he is chaotic in all areas of his life...its me that tries to build routines and 'tidy' around him, but at times when we ask him to start/change or end an activity that he will react badly unless we get it just right- to others he appears to split hairs but we see it is because he needs very specific directions-telling him what he can do rather than what he can't do - as he only sees it as 'black and white' (no gray) so am told this kind of falls into the routines/order...i am convinced that to him his chaos is as important to him as another's order and therfore try to involve him in any changes so he is less baffled!We also have a joke between us that when he 'goes off' on one of his'computer' talks....i allow him a length of time then i start talking about 'ironing'...i've done this for years and it doesn't work if i talk about anything else- he will only stop if i describe my 'exciting ' ironing...he will then say 'bye mum' and run off!

it may sound odd- but congratulations on the disgnosis- although it doesn't open doors as it should it does make life a bit easier.

Ds1 doesn't have enough language to use social stories yet but I do know other people have found them useful (actually the main person I'm thinking of had an ASD/ADHD dx)

Husbands always take time to come round to the idea. Mine used to go mad at me if I even suggested it. Whilst he still find the autism word very difficult- he is now briliant with ds1. So fingers crossed yours will come round to the idea. If he sees your strategies working he probably will.

Check out whether you're entitled to ICA (invalid care allowance) can't remember if you need higher dla. You can apply whilst the dla applicaiton is going through.

Ica is available for those on higher and middle rate dla.

O.K!! Full steam ahead to make this DLA claim and will get the ICA stuff too- THANKS for being interested in us!!Am 'banning' myself from the PC for the next week ...otherwise i'll miss the date that i need to get the forms in by....and as they backdate it etc...better not do that!! on a lighter note....I love your name'JIMJAMS' as thats what i call my boys' pyjamas! Is it anything to do with that....or am i still the only one in the world who calls them jimjams!!!!! My boys chose my user name as it fits me perfect! can u imagin T's frustrations when i forget what i've promised!

Yeah- I call them Jimjams too- and I call ds1 Jimjams- it derives form his middle name. Enjoy the forms.......NOT!

Mrs Forgetful- just wanted to post to say that Thomas sounds like a sweetie in his own idiosyncratic way. Sounds like he has a rather fab mum too, if you don't mind my saying so

Jimjams- another rather fab mum while I'm at it- would you mind if I asked tech for your email? I seeing a family at work who I think could really use your cyber advice/support if you'd be up for it. Do understand if you'd rather not- I know you've got a lot on.

Go for it scrummy. I'm happy to help if I can.

My Son is at last tired (after 9 years!) and asks to go to bed and sleeps!!!!!
Sleep!!!!!!!!.... or rather a lack of it ! This has always been a problem for T .... and therefore for me too. Now understand this to be common with Aspergers .
Typically he did not ever get tired regardless of how late he was up- HE NEVER YAWNED! he just got moodier as the late nights caught up- but he still never fell asleep before 11.00 or midnight.
(as a baby was prescribed sedatives as i had severe post natal depression- but this only left me feeling guilty the following day as i was drugging him so I could sleep- but by another day of crying and not being able to console him i would be so desparate for a break that i would drug him again)
usually managed to get him in bed by 9 or 9.30pm then had to keep baby monitor on to check if he was asleep as he was always so restless-this is where he began the wallpaper stripping/thread pulling/'pillow filling' removal etc...he REALLY did not see why he HAD to go to bed as he was NEVER tired- we just told him HE MUST BE TIRED etc.he never came down for the usual reasons (like a drink of water) but again obviously to do with his AS would say that ....
THE MOON WAS TOO BRIGHT
HIS BED WAS SCRATCHING HIM
THERE WAS LAVA ON THE FLOOR
HIS EYES WOULDN'T STAY SHUT
THE CLOCK WAS TICKING TOO LOUD
...ETC
Lately (more worrying) he had began tying his sheets into his brothers bed above and either raising his arms or legs into the bits of sheets he had hanging down (like a sling) or several times i have found him with the sheets tied around his neck.
so.... we were offered to try MELATONIN
(for those who don't know ...apparently people with neuro disorders-incl AS- don't produce enough or at the wrong time - the hormone MELATONIN.(this is a hormone produced by the pituatry gland)This hormone regulates the 'body clock' so therefore it is thought that they don't get tired as nothing tells ther body to get tired.
THE RESULT!!!!!
The 1st night gave him it at 8pm and he was yawning at 9!!!He was SOOOOOOO chuffed with himself...he said he'd never felt tired like that B4!!I couldn't believe it when at 9.30 he asked to go to bed!! I went back in to ask him to turn down his radio 10 mins later and he was asleep!! I came down stairs and cried!! For the past 6 years he has NEVER been asleep at that time - and I didn't know what to do with myself!!
The next morning he actually woke naturally (again unknown for him...usulally have to wake him - and this is a VERY lengthy process as he reacts badly if i don't wake him in a certain way)
We're now 2 weeks on and after 14 nights of him sleeping so well we are even noticing remarkable changes to his behaviour- he is so much calmer in the evenings- i'm sure it's because it was all such a battle B4 - that now we're all so much more relaxed .
Obviously I'd love to hear what anyone thinks (though i am scared that someone will tell me that we have overlooked something and we will regret this etc) but at the moment i can't explain how i feel when he tries to stop a yawn and then grins !
We've even noticed he isn't 'fiddling' with his sheets/clothes stc-he asks to be 'tucked in'-whereas B4 he hated having the sheets over him.
He's still very hyper 1st thing in the morning and at the moment we are still giving him his ritalin (ADHD) - but have been advised that his ADHD behaviour may reduce as his AS is managed and it's easier to manage him now he is calmer later in the day...so we hope that we may be able to reduce/stop his ritalin...most days at home he only needs that 1st dose- and then with close supervision and guidance we don't need to medicate the rest of the day- wheras on school days because they don't offer him any extra support (only recently diagnosed) he has to be medicated all day...but because i know we can manage without the med- i feel he is being medicated just to give the school an easy life-but thats another story......!
To end on a light note.....He tells people " I've got Aspergers - and i like cheeseburgers!" and ref his ADHD he says " its like i have 2 brains and their both telling me what i should do and i get mixed up" At a school disco he also once said that "when the lights flash i can't hear the music and when i hear the music i can't see the lights flash" How do your children explain it all??

I love the bit about not being able to hear the music when watching the lights! So why do people still insist on eye contact? I tell ask them whether they want ds1 to listen to them or watch them.....

ds1 cannot bear anything including ds2, on the stairs- he likes to look at the angles. If ds2 tries to climb on the stairs ds1 will start screaming- we always acknowledge that and remove him. Oh and no hoovering when ds1 is around.

JIMJAMS- very happy as been awarded DLA mid rate care and low mobility- we've spent £250 of the back dated ammount decorating his room- we've gone along a space theme-with sparkling dark blue ceiling,metalic grey textured wallpaper and 'planets' (xmas ballballs) hanging in an orbit round the 'sun' (light fitting)
we're so happy to have done this room and could not have done it without the money- he spends hours in the hols and weekends in there and since being on the MELATONIN for his sleep probs he LOVES going to bed- B4 he did not get tired and often wrecked his quilts,wallpaper,books etc with his absent minded fiddling (boredom???love of textures???) hence we did not dare redecorate.Also i have quit work due to my continuing depression- my doc says happy to continue to sign me off as far as claiming dole money- so i will try now to get a grip of myself and move forwards.
biggest prob we're having at moment is that due to tom going to cubs- and being liked by the others we are beginning to get requests for him to 'chill out/ hang out' with the m and i don't know how to handle it- he never gets asked by schoolmates and i often think its because the mums know he has Aspergers etc- so in a way i am chuffed that he has made these friends etc...but feel scared aas i dont know they're mums etc and feel edgy about what to do if he doesn't come home as agreed-if the mum knows me etc then i feel easier to chase him up etc- so i've tried inviting them in to at least suss out the kid but due to my own health probs i find it hard having people in the house-sometimes i worry that i make things worse and create issues where there aren't any- does anyone have advise to help me allow my 9yr old son to have at least a little fun- despite his inability to tell the time/or ask someone the time...road sense....stranger danger....co-ordination/gets lost easily...poor understanding of difference between someone being genuine or sarcastic/mocking...oh! i could go on! also on the subject of kids coming here we have another prob- i practically have to search the lads b4 they go as tom also tends to 'give' them his playstation games etc- he trusts people 100% and i have to explain how they might not return it or break it etc- also as far as it goes tom is generally reluctant to go out and i'm worried if i've caused this by not allowing him much freedom?
deep down i know i'm ok because our 4 yr old is almost better near traffic etc than tom is now (and can use a knife and can cut with scissors!)thanx!

JIMJAMS- very happy as been awarded DLA mid rate care and low mobility- we've spent £250 of the back dated ammount decorating his room- we've gone along a space theme-with sparkling dark blue ceiling,metalic grey textured wallpaper and 'planets' (xmas ballballs) hanging in an orbit round the 'sun' (light fitting)
we're so happy to have done this room and could not have done it without the money- he spends hours in the hols and weekends in there and since being on the MELATONIN for his sleep probs he LOVES going to bed- B4 he did not get tired and often wrecked his quilts,wallpaper,books etc with his absent minded fiddling (boredom???love of textures???) hence we did not dare redecorate.Also i have quit work due to my continuing depression- my doc says happy to continue to sign me off as far as claiming dole money- so i will try now to get a grip of myself and move forwards.
biggest prob we're having at moment is that due to tom going to cubs- and being liked by the others we are beginning to get requests for him to 'chill out/ hang out' with the m and i don't know how to handle it- he never gets asked by schoolmates and i often think its because the mums know he has Aspergers etc- so in a way i am chuffed that he has made these friends etc...but feel scared aas i dont know they're mums etc and feel edgy about what to do if he doesn't come home as agreed-if the mum knows me etc then i feel easier to chase him up etc- so i've tried inviting them in to at least suss out the kid but due to my own health probs i find it hard having people in the house-sometimes i worry that i make things worse and create issues where there aren't any- does anyone have advise to help me allow my 9yr old son to have at least a little fun- despite his inability to tell the time/or ask someone the time...road sense....stranger danger....co-ordination/gets lost easily...poor understanding of difference between someone being genuine or sarcastic/mocking...oh! i could go on! also on the subject of kids coming here we have another prob- i practically have to search the lads b4 they go as tom also tends to 'give' them his playstation games etc- he trusts people 100% and i have to explain how they might not return it or break it etc- also as far as it goes tom is generally reluctant to go out and i'm worried if i've caused this by not allowing him much freedom?
deep down i know i'm ok because our 4 yr old is almost better near traffic etc than tom is now (and can use a knife and can cut with scissors!)thanx!

Congratulations on the DLA. the backpayment is great isn't it!

Can't really help you on the friend's front as we haven't reached that stage yet. I would have a word with the parents though- and maybe ask them to tell you of any problems.

Where did you get melatonin from. Did you have to get it from the states? Or did you get it on prescription?

What is this website that has the check list for autism/aspergers?

Yes, I'd like to know about these websites too - more interested in seeing if dh is as aspie as I now think he is. It's extraordinary how often I point out something that strikes me as odd about ds1, and dh says, but that seems perfectly normal to me! He told me the other day that he used to spend hours watching the boiler in some forbidden room when he was at primary school...

Can you all give me a bit of advice? My DD has CP and behavoiur issues. The preschool she is at are struggling with her. She kicks, pinches and bite the other kids. She is obsessed with knifes, sissors and water. She can't handle being in a large group even though she has 1:1. She is the same at home.
Social services came out yesterday to check the extention that we have had built for the two kids, and she thinks that DD may have Autism or ADHD, but my HV said that because she has good eye contact that it not possible.
GOS said that they didn't think she had ADHD or autism 'at the moment' what ever that means???!!!
I am at a loss at the moment as we have no idea what is going on in her head. We have to write a report for the Special education dept and I'm struggling with it. What do you all think??