lisa35 Report post Posted March 4, 2007 well, 2 years after assessments, with SALT, Phsio, ot and clinical pyschologist, had a final appt with paedritrician, she said as she thought at beginning that he doesnt fit enough criteria to be diagnosedas on spectrum However, all speciailists ot, phsio,etc,etc, say has "traits" just something in each assessment thats not quiet in synch I expected this, done a lot of reading, but he so, so is like all the posts I read here! So, for some reason, my 11 year old has sensory issues, has difficulties socially, finds reading emotions hard,and so on!!!! So no dx, yet all the asd tips work with him!! She did say this doesnt mean that things may not change in the future, Im not sure if this was implying if as he gets older and his issues dont resolve with maturity that its more likeley a formal dx will be reached? Any ideas??!! Anyway, I accept this as most important thing is we re getting help with his difficulties, and thats most important Anyone got a similar child? Lisa Quote Share this post Link to post Share on other sites
mummy Report post Posted March 4, 2007 This kind of thing seems to happen more depending on where you live. Our son had a diagnosis of dyspraxia until he was 11 which was when he finally got the Dx of Aspergers. We are going through a very similar thing with our 11 year old at the moment who is undiagnosed ADHD. He has had behavioural difficulties since he was 10 months old. He is violent towards his brother, has social and emotional difficulties, ASD traits, a hearing difficulty, poor concentration and focussing, is hyperactive and impulsive. yet because he isn't 'naughty' at school then no diagnosis. It is SO frustrating. Many kids with ASD aren't diagnosed until older if they are at the high functioning end as our eldest is. You may find that his difficulties become more pronounced when he begins high school, in which case you can go back again to paed. You could of course get a second opinion. Has he had an ADOS or 3di done? Hang in there. mummy x Quote Share this post Link to post Share on other sites
Karen A Report post Posted March 4, 2007 Hi Yes we are in a similar situation.Dx of DCD with Social Communication Difficulties-professionals were not able to agree that Ben has sufficient traits for Asperger diagnosis.Karen. Quote Share this post Link to post Share on other sites
lisa35 Report post Posted March 4, 2007 thanks, yep, did the ados, were some deficits, but not enough for dx, high school , lordy,we re just strating to get help and improve things now, hope things dont deteriorate at upper school , they seem good,its not that I want him to be "anything", just bit woolly! Lisa Quote Share this post Link to post Share on other sites
KateBall Report post Posted March 4, 2007 Anyone got a similar child? Lisa yes yes yes yes yes yes yes yes You have my son and I'm you. Got to be cos you are saying exactly what I have been saying for so long. My son is AS I know he is - but he hasnt managed to convince "them" yet. Exhausting assessment process - no one really took any notice or listened. One Dr saw him for 20 mins - yes just 20 mins and based his decision on this. Said S was too sociable. Forget all the other fruitcake stuff - it seems this is all that matters to him. Like you we too are getting help at the moment. Not sure if a dx would make any real difference. He is dx as having a "communication disorder". I know he's AS, other parents of AS children who see him agree. He is very subtle - certainly away from the home. But at home he is pretty classic in many ways. I would say he's a high functioning AS. He's 8. What about yours? Quote Share this post Link to post Share on other sites
KateBall Report post Posted March 4, 2007 well, 2 years after assessments, with SALT, Phsio, ot and clinical pyschologist, had a final appt with paedritrician, she said as she thought at beginning that he doesnt fit enough criteria to be diagnosedas on spectrum However, all speciailists ot, phsio,etc,etc, say has "traits" just something in each assessment thats not quiet in synch I expected this, done a lot of reading, but he so, so is like all the posts I read here! So, for some reason, my 11 year old has sensory issues, has difficulties socially, finds reading emotions hard,and so on!!!! So no dx, yet all the asd tips work with him!! Lisa Yes - this is exactly - word for word - our own situation. Quote Share this post Link to post Share on other sites
lisa35 Report post Posted March 4, 2007 Thanks for reply Kate, my son is 11, he is subtle, especially away from home, think he s learnt to adapt to being "whats expected" Im well aware also tho its not severe,,,,its so subtle,,, it wasnt til I started reading up everything made sense, only have him, yhink if Id had other children Idve realised earlier Hes very clever , intellect wise holds his own in adult company, has a lot of what I see as adult insight too, a lot of sweet, sincere thoughts, almost naive for his age Yet, things like telling the time, using phone, asking for things in a shop worry him. We ve had all usual, oh, hes only one, only used to adult company,etc,etc Loves routine eg, if we say we re going somewhere and change at last minute it totally throws him! I think he has some traits, not all,and definatley has sensory issues, especially with sound, and not good with flourescent lighting, and some clothing, touch too,,,, especially upper arms and scalp Waffling now, but hope makes sense! Also, hypermobility ,very clumsy, handwriting awful, ot said poor core stability, but dyspraxia assessment negative (my sisters daughter is dyspraxic, and her brother dyslexic) To be honest the dr and all involved have done v comprehensive assessment, and it makes sense, she said all kids v v v individual, dont fit into a "box" and we cant pigeon hole them, she is going to write a letter to high school for us summarising Joes dificulties Sorry for ramble!!! Lisa Quote Share this post Link to post Share on other sites
Faithnomore Report post Posted March 4, 2007 I spent years trying to convince psych's there was something different about DS1, even when he was dx with ADHD I knew that wasn't the whole story. I'd previously dismissed ASD myself because he wasn't aloof or socially withdrawn. However his all consuming obssessions made me look into ASD again recently and this time I realised that he fit the criteria for ASD. So this time I wrote down all the things that were different about him and took it with me to our next appt. Bingo! He was identified as ASD. A month later his official dx was mild autism, I was surprised as I expected an AS dx. The psych's reasoning for his dx was that he had all the traits of autism but he had no speach delay??!! I asked about his maturity as he's 11 but is more like a 5 yr old, she said he will mature just at a much slower rate. From what I can gather this lack of maturity is normal for ASD kids. Quote Share this post Link to post Share on other sites
lisa35 Report post Posted March 4, 2007 Hi Faith, we sometimes say maturity wise my son is like a 7 year old, he still takes cuddly dogs to bed, bless him, but he knows this isnt how his peer group acts, also sometimes likes "younger " toys, I used to say he couldnt have them, but dont now. He spends enough time trying to conform, at home he can be himself x Lisa Quote Share this post Link to post Share on other sites
Noetic Report post Posted March 4, 2007 Hi Faith, we sometimes say maturity wise my son is like a 7 year old, he still takes cuddly dogs to bed, bless him, but he knows this isnt how his peer group acts, also sometimes likes "younger " toys, I used to say he couldnt have them, but dont now. He spends enough time trying to conform, at home he can be himself x Lisa Um... I'm 28 1/2 and I still have my cuddly dog 'Bello' in bed which I've had since I was about one year old and who barely ever left my bedside in all this time! And a glove puppet rat called Igor, and a penguin pillow called, uh, penguin. And a small PG Tips monkey, plus a grinning cat toy by the side of my bed. And two large very soft cushtie pillows. Quote Share this post Link to post Share on other sites
KarenT Report post Posted March 5, 2007 Yes - this is exactly - word for word - our own situation. Us too. We finally got J's dx in July last year, after requesting a second opinion referral to a specialist ASD unit where they had a lot more idea of what they were looking for. Up till then I felt that assessment was a box-ticking exercise and that because he didn't tick everything, then they'd thought he couldn't be ASD. Utter rot. The difference, IMO, between the two assessments was that the first, at our local Child and Family dept, seemed to be looking for reasons why he wasn't ASD, whereas the second, at the specialist unit, were looking for reasons why he was. Made all the difference. Karen x Quote Share this post Link to post Share on other sites
KateBall Report post Posted March 5, 2007 A month later his official dx was mild autism, I was surprised as I expected an AS dx. The psych's reasoning for his dx was that he had all the traits of autism but he had no speach delay??!! On the contrary I was told that because my son had speech delay then he couldn't be Aspergers. Was also told that he is socially immature. They used this opinion to suggest therefore that he can't be aspergers. There is just no consistency of knowledge or reasoning. If only diagnosis was up to a panel of parents of children with autism - or involved them in some way. These psychs and drs just don't have enough experience of seeing all the behaviours that could prove you have an autistic child. Quote Share this post Link to post Share on other sites
Karen A Report post Posted March 5, 2007 Hi From what I understand speach delay is the main factor used to differentiate between Asperger Syndrome and Autism.Children with Asperger do not have speach delay and may even have advanced speach in some areas Eg factual information.Karen. Quote Share this post Link to post Share on other sites
butterfingersbimbo Report post Posted March 5, 2007 oh lisa i bet you feel like this i bet its all down to funding, ffs!!! Quote Share this post Link to post Share on other sites
karin Report post Posted March 5, 2007 lisa i feel like you ive been trying to get my 2 diagnosed for 61/2 years i recently saw another specialist who said they have traits of aspergers but not enough for a diagnosis although i went armed with school reports (way behind in reading and writing nearly same results as their younger brother who was in yr2 then) also a diary of the number of times they had been bullied at school sometimes severely we were there 2 hours also discussed familys history their obsessions (latest one is the bill) and finally she asked what did i want out of this i said people to realise what they are like,some respite from them and a diagnosis she said they were somewhere along the spectrum but not sure where i said without diagnosis i dont get any financial help for them dla have turned us down as no doctor would help us in applying for it,its not that im doing it for the money (as one doctor thought thats all i was doing it for) i only live on income support and family allowance without a diagnosis the local authority dont have to do anything to help you i know how you feel but like me keep plugging away and hopeful one day we will get our diagnosis in writing keep smilin karin <'> <'> <'> Quote Share this post Link to post Share on other sites
Bambi Report post Posted March 5, 2007 You are entitled to a 2nd opinion if u are unhappy with whatever decisions are made regarding a concrete dx, i had T assessed by our local mental health team and they said he has no ASD as school say he is fine and basically it was my parenting! some assessment it was when the psychologist only spent 30 mins with T in total in which he failed the sally anne test and was only interested in her age (like he is with most people including strangers) and he refused to do anything she wanted him to. Yet after this no ASD and as u can imagine i was fuming to say the least! after hitting rock bottom i went to my GP and i said i wanted a 2nd opinion (which u are entitled to by law & u wont see the same professionals going for a 2nd opinion) and my GP was happy to (he too believes T has ASD and was shocked at the mental health teams conclusion). T got referred to a fantastic Paed in the next town to us (we first met him privately when i went to see him for a chat) he works part time for the NHS and then we had to go thru the Exceptional Cases Committee to get funding approved for T to be seen by an Autism centre in Nottingham. Ts Paed did all this as he could see himself that T has an ASD but he alone could not dx him so thats why he wanted him to go to Nottingham after his own report on T had no bearing on the (pathetic) assessment that was done in my town. All i can say is keep on and pls dont ever give up, they want us to give up and thats why they have us battling for EVERYTHING our special needs kids so rightly need & deserve. Wishing u all the best with getting a dx and the sooner the better! Bambi x Quote Share this post Link to post Share on other sites
peppa Report post Posted March 5, 2007 Aww hun, i really feel for you and your predicament, but hang in there, we know our own kids and if you keep fighting hopefully it will pay off, were all here to offer support and lend an ear when you need us. We recieved a diagnosis today for dd, HFA, and when i read situations like yours i realise how remarkably lucky weve been. I really hope you get there hun, in the meantime im sending u loadsa <'> <'> <'> <'> <'> , goodluck x Quote Share this post Link to post Share on other sites
lisa35 Report post Posted March 5, 2007 thanks for all replies of support, it makes me realise that our son tho has "traits" doesnt have as many hurdles to face as many here To be honest Im happy theyre recognised, and most importantly we re getting help without dx. Just other day he said he was sick of being prodded and poked and made to feel different, so have decided , for now at least, to use all the asd strategies and acept dx It works for him, and been a long two yrs, it couldve ben worse, much worse, couldve just said we were nutty parents! None the less i understand totally why so many continue to fight for dx, and if in time he struggles, I will seek out more assessment Good Luck to all you special mums and dads! Lisa xxx Quote Share this post Link to post Share on other sites
