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.

Agree with Jimjams about trying to access Earlybird (also like your new name bOgpipes!). I have friends whose son has DS but also got a diagnosis of ASD at about age 5 or so, now just been labelled ADHD! I asked them if it was difficult to get the ASD diagnosis (assuming that Drs etc would just say he's got DS) and they said no. I didn't have a chance to probe any further but can find out more for you if you like.

I noticed I'd written bogpipes- I think my tyoing gets worse every day!

Jimjoms

typing even- I really should preview!

no don't preview jimjams, life is too short. I like it when I see word tangles. It means I am not the only one to get my fingers in a twist.

I'm all worried now. My ds lines his cars up, and gets really cross if one of them moves slightly. However, he also plays with them. Are there any other pointers to look out for? He does point at things, and make eye eontact.

Wouldn't worry unduly chinchilla. Totally NT ds2 lines eveything up and totally autistic ds1 messes them up.

O.K.... I'm going to be really brave and ask a big favour.......please don't laugh!!!!
can someone explain all the abreviations!!!!when i post messages i always mention my son by name (Tom/Thomas) and his diagnosis of Aspergers/ADHD...obviously names aren't a grat idea...how could i abbreviate....i also have another son aspergers(?)and another son ADHD(?)

ds=dear/darling son (first born would be ds1)
dd=dear/darling daughter
dh=dear/darling husband
dp=dear/darling partner

OK, can I be brave too? and say I hate those abbreviations, so twee. I can't bring myself to use them but with only 2 children (1 of each) its not so hard to differentiate. Personally I'd prefer something like 8ys or 5md which gives child's age and sex. I don't know where the originals came from as I'm relatively new and obviously can't expect everyone to change, I just don't have to use them myself.

Message withdrawn

i dont really like to use them. on some other boards (smaller communities tho) we are all on 1st name basis. its just easier on here to use them as most people here do and its easier to keep to it rather than try and change them lol.

I also tend to think ds, not dear son too. When I first saw the abbreviations (they have been on mumsnet since early times to the best of my knowledge) I thought they were a bit twee too.

But of course the 'd' can stand for anything in your head. The 'dear' is a bit ironic I think.

Hi all RE: Aspergers etc... Thanks for all the replies - I guess, I am just wondering with such behavioural issues (overhugging and basically a strangle type hold around the neck)Does anyone, know of any other children who have this similiar type of behaviour????? Heck, here in NZ - my therapists look at me blankly - like ummmm we have never seen, or heard of this happening before. Can a sometimes happy, friendly, (popular at kindy) child have a behavioural disorder - or gosh, is this just a stage I am going thru LOL he'll be 4yrs old in Sept. Thanks for all your help.

RE: Aspergers - Forgot to mention, next Friday - a clinican Psycologist (not sure on spelling) is coming to my early intervention class to access him there - Of course, he'll be very well behavioured probably, and I'll be told (its in my head LOL) It took alot, just to get this organised too!!!

Hi everyone just wondered whether anyone had had a similar experience with their child. My daughter is coming up for 3 years old in September and has been having speech therapy, and has been seen my a number of other helpers involved, for her speech/development delay. The paediatrician she saw back in June said she wanted to take bloods to rule out certain things, and then 2 weeks ago they called up saying that they had not got enough blood/urine from one of the tests and that it was part positive, and would need to be repeated. Apparently the test they are doing is a very rare one, to rule out certain disorders, it has something to do with her metabolism and cells, but I cannot help being worried that the test will come back positive and have been sick with the worry. My child physically looks healthy, seems to eat o.k. but she is very hyperactive along with the speech and development delay.

Does anyone have any helpful advice, i'mstill waiting for the results of the bloods.

Having just found this site im relieved to find that im not alone.My 8yr son was diagnosed with Aspergers 2 months ago but that was all i got a diagnosis.We were sent away with no help and a minimum of 6mth waiting list to be referred to a behaviour clinic.After spending the next two weeks or so crying i found a private professor who has given me some tips and good advice.I think i have read just about every book there is about Aspergers and am determined to do the best for my son.It was just good to hear of other people in similar situations as i felt so alone.I am currently looking into diet and possibly trying a gluten and casesin free one.has anyone got any tips on this,wether its helped or not?

hi Viv - we had the same diagnosis experience (why don't you go and read the Tony Attwood book, we'll maybe see him again in 6 months..) and are just about to see someone else privately to try and make a bit more sense of it all. We want to know more about the GFCF diet too, and will probably get ds1's urine tested. The Sunderland site (try googling sunderland and autism)is a good place to start, and there's a good booklet they will send out to you for £3 or so. We've also had good results with fish oil and magnesium supplementation.
Bagpipes - our ds1 (now nearly 6, diagnosed Aspergers earlier this year) does the violent hugs, tackles, neck-hold stuff too. He was always a very exuberant toddler, and I didn't start to worry about it until he was nearly 4. We were interviewing for our first nanny then, and he certainly made himself felt! Now he is still sometimes over-affectionate, and gets too close to people, and it causes problems with other little boys at school sometimes, but I love it that he is still very tactile and loving with all of us in the family (most of the time anyway!)

My son, who is not AS but very definitely ASD, went through a phase of "over hugging". Like many of his behaviours, it was new to him and he practised it to an inappropriate level (I never thought I would be thinking "please stop hugging me"!) but it then settled down into more "normal" levels and seemed to be the beginning of him finding out about being affectinate. He has always done the "chin press" which is consdered quite common in autim and used to do the "shudder", a sort of tensing up of everything with a bit of teeth baring. I believe that these are all sensory-related habits and reflect the need to really FEEL something a lot to feel it at all at first. I don't really want to discuss the GFCF diet as I'm a bit of a sceptic although I think it can be very effective for some children. You need to make your own mind up on this one.

Jules38 I dont know what it is with your daughter maybe you could ring up and ask for them to explain a bit better. Hope everything goes ok for you also if you want to talk about the results it may be easier if you post on the special needs board because all the ladies have children with a wider range of conditions so someone my know more about it- my dd has undiagnosed development delays so I understand how you feel on that score. Good luck and let us know how you get on

We've been gluten free for 2 years now- and it has made a major difference. I think it either works or it doesn't but you tend to know pretty quickly. We had the urine test done at Sunderland- do you have the details? If not I'll post them here later. If your child does turn out to be sensitive to foods it is worth checking other foods out as well. A lot of children have problems with apples (although our son is fine). He is absolutely terrible with peanuts though (turns into a headbanging lunatic) which was a bit of a surprise. You most definitely are not alone.

If you go for the diet I'd recommend reading marilyn LeBreton's book "diet intervention and autism" before starting.

Hi everyone
jmbl1964 - I was wondering if you didn't mind, could you go into it a little more with your sons big hugs, and behaviour etc.... Was this 'rather over the top' type of hugging a clinical sign of Aspergers ( hope that was ok to say that, and I haven't upset anyone) My DS1 will be 4 very soon, just in a couple of weeks. Some, people say my wee boy is frustrated and wants to make conversation with other children ( yet I think he does pretty well, with his language delay being Down syndrome) He always greets his peers - yells and screams at times too but is always says 'hello Chloe, Hello Todd, etc... I would be keen to know, what other symptoms your son had, or anyone else in fact!!! Many thanks everyone.

Thanx everyone for your advice.Im still amazed that ive found other people who understand what im going through.I havent got details of the Sunderland so would appreciate you posting it.I agree that since the diagnosis i have approached things differently, it helps to know that he wasnt being difficult for the sake of it and we have stopped shouting at each other all the time!The last few weeks have been very stressful but i finally feel im getting a grip on things.I can even say autism now without crying!How daft is that?Think i will be a regular on here now and no doubt will annoy everyone with loadsa questions.But you never know i might be able to offer advice too!

VIV/BAGPIPES.... i share your enthusiasm for this site...it is wonderful that we are all over the place yet have so much in common.sometimes i love to just read someones comments which mirror my own and whether they are 'officially recognised/diagnostic criterea' type comments or simply another child doing exactly what mine do....it just doesn't matter to me....just to know that in someones home, somewhere else, is someones child being noticed,loved and cherished.so yes...i like to know the 'official' stuff ....but find the 'personal' stuff more theraputic- i've also found brilliant links to other sites recommended by people on this site- now about the 'excessive hugging'- my TOM was a hugger too and from a distance it used to look like he was squeezing and would appear to tremble and go so tense- he then kept kissing people- and when asked to stop- began licking them instead...this continued into recption/yr 1. i found this so hard to 'parent' as he said he just wanted to show people'how much he loved them'- when at 7 along with other symptoms ADHD was diagnosed and we gave him many 'rules' he had to follow in order to 'fit in' he lost all his 'va va vooooom!' and withdrew. we then began to realise that we were makong him change into someone he was not...then at 9 he has finally been diagnosed as aspergers and though i am the ONLY ONE THAT TRULY BELIEVES HE HAS 'IT'... simply having the disagnosis has improved hopme life no end....for example when 'things' go a bit 'odd'(ie interuppting /ending activities or introducing new foods) I take the lead and 'parent' using various strategies (i will list my 'skills/areas of interest later!!!!) and will then get agreement from my husb that things eased up better than B4 ...rest of the world to do the same!
I think we should all list our 'skills and areas of interest' so that we all can look out for members who have experience...its not that what we say is 'medically proven etc....but back to the just knowing that another know what we mean!
what do you all think?
My 'skills' are...
'conquering severe mealtime battles' (after reading great book 'CAN'T EAT,WON'T EAT)
instead of looking for eye contact - especially when 'disciplining' i began bending down/sitting at child's height and 'whispering' to him...this worked brilliantly if we were outside as he can do some pretty embaressing things involving bits of his body....and sometimes you just don't want to shout this out publicly!!!
using 'social stories' to explain how society expects him to behave and what he should say..eg if he bumps into people to apologise etc- this also helps when he doesn't understand what other people are thinking!!! (like the 'literal thinking etc)
Melatonin medication to get him to sleep
Methyphenidate/ritalin/equasym/concerta for his ADHD
handling his need to talk constantly about his current 'special interest or obsession' by agreeing 'promts' or 'cues' or 'triggers' with tom that i introduce at the pont at which i have allowed him to offload but need to end the one sided conversation...eg i will either start talking about the intrecasies of ironing or say 'jolly good' or 'toddle off' in a bright happy voice....he dissapears instantly!! OUR lated we have agreed is that when he exhibits brilliant self control/manners/concern fo others feelings etc i simply say 'WELL DONE TOM' AND HE 'KNOWS' .....he has even started saying' have you noticed that i was very sensible when.....happened' etc....which i am so proud about
so at the age of nearly 10 we are finding him alot 'easier' and i really believe that this is because of how we look at him differently now...not as others still see him.... bossy,rude,and odd....but as unique and sensitive!
Finally! (i am known for my essays!!)
I am in the process of trying to get my 6.5 yr old son diagnosed as he is to me very much aspergers....and my 4 yr old son starts school nextt week and i'm sure he has got at least ADHD!!!!( and despite what the media say...it's not down to the parenting!!!!....Honest!!!!)

Great post Mrsforgetful. Recommend to anyone, particularly those interested in AS, to read The Curious Incident of The Dog in the Night-Time by Mark Haddon. Very original, accurate but sad.