negative feedback from nhs psychologists

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my first time on here,strangely nervous!! i have had difficulties with my 12 year old for what seems like forever!! a most beautiful,intellectual young man who seems to suffer from extreme anxiety, the sadness, massive meltdowns, hugely oppositional(convinced he's always right, even if hes way off!!)
I first noticed he was different when he was 2/3, he knew every car in our street, make model colour etc, by three he collection of pokemon started, toys, cards, stats etc, on to star wars, lord of the rings(still there) and now lotr warhammer, when obbsessing it take up nearly 90% of his waking hours, im sure he even dreams warhammer, i know i do!! Jacob is also talented at math, history and science, he adores military strategy and is a fan of attilla the hun. When talking to jacob about his fave subjects he could go on forever, yet shows very little interest in what others are doing, especially at home. I dont feel he has a problem with motor skills as has lovely handwriting, was fantastic with a football(especially tricks), yet still cant brush his teeth with out getiing it all over his clothes!! the same with his dinner. Jacob does have a probl em with organising homself, so has a shedule on his door with his school routine, yet appears to have a problem if hasnt done something at designated time, seems to throw him.
Jacob has a issue with change and we have abandonded camping holidays, christmas at home to go to my mums(as thats what we always did), when he was younger he hated change in me e.g new earrings/ new hair colour.
He has hyper sensitivity to smell, also when young would cut labels out of clothing, always wore same type of clothing would never wear jeans, tomatoes used to burn his tongue and hands, hated dogs barking-could go on....
there are so many aspects of jacobs personality that point to aspergers yet the first clinician said he needed bereavement counselling due to the death if his step uncle, and the second said his obbsessional behaviour came from his inner worries- aaarrrhhh!! personally my whole family feel they are way off the ball- i have a four year old who is 50 time more flexible that jacob, gets a joke quicker, etc etc...Luckily my folks are paying for a private assessment, so i remain hopeful...if he says other wise then i will search other avenues.
Jacobs fathers family show many autistic traits and im sure im on the right path. Jacob also has rhinitis, eczema, was born with a fungal infection, suffers fom ulcers and all sorts!! yet permanentally thinks he has cancer.
jacob did have friends in primary school, yet often would have to contol the game, win etc, since he has gone to secondary shcoolm, he say he has friends, yet seem to be limited and never gets phonecalls or invites, he only see one of his primary friends and thats very little, spend nearly alll summer in his room playing ygi oh with himself.
i just want him to be happy in his in skin, yet i think his fear of failure dosnt allow him to accept he has any issues, or pehaps his inability to verbalise how he feels dosent help, any way WOW,WHAT A RANT!! be nice to hear from any one if you had the patiece to read this..........

I must say that given your description, Jacob does sound like a good fit for Asperger's Syndrome. I would suggest you seek a second opinion about his diagnosis; however, before you do, it would help that you familiarize yourself with the DSM criteria. If you can identify most of these characteristics in Jacob and point them out to the clinician, your feedback should be a lot better. The clinician would need to account for those characteristics in Jacob and identify some other source.

Also, in order to receive a diagnosis, the greater portion of these criteria must be met. The clinician should be investigating these questions, anyway.

Here is a link to the criteria.

http://www.autreat.com/dsm4-aspergers.html

I don't know if getting the label will help him be happier in his own skin ... it did for my son, because it answered the question of "why am I not like those kids?" but that isn't the same for all kids.

Your son does sound AS to me, but I guess my question for you is this: what do you want from a diagnosis? The label is only as good as what it can get for you. In our case, that was services and supports at school. But I'm not reading that your son needs any.

Does your son mind the absence of close friends? I know my son is totally happy with one child who he can count on, and that is all he needs. The rest of the world, all his acquaintances, tend to fall into the category of "annoying," even though he does consider some to be "friends" and they him.

My son just started getting War Hammer because his best friend is into it. The tough thing there, however, is that so far the few kids who do it aren't all in the same series (fantasy v. 40K v. LOTR). Since he has a mom (me) and sister who are artsy, he's discovered that we're actually interested in some aspect of the game (creating the models), even if not really willing to play it. His favorite RPG is probably Dungeons and Dragons.

Fear of failure is a totally separate issue, and a really difficult one. My AS son hasn't been burdened by that one too much, but my NT daughter very much is. I wish I had decent advice beyond keep talking.

well thanks so much for your replies... yeah the diagnoses thing, hughely it will help Jacob to understand himself, as he has very little idea of self, and yes as you said to access certain services, even down to socail groups where he may meet like minded people, though warhammer seems to have a lot of kids/adults with similar interests and personalities, and yeah i spend many hours painting armies, am just in the middle of a galadrim army now!!
Jacob does appear quite happy with the few friends he has, yet appears to try to "fit in" at school he has tried skating/scootering etc, but lasted no longer that a month, he dosent tell his friends at school what he likes at home, and keeps his two lives very separate, at school he attends a social skills group(pathfinders), hes seems to do well academically, yet was suspended at scool last year for a violent outburst, hes not norally violent- and has on going problems with some teachers for being rude, or to my mind just telling it how it is!! so just remaining posotive and keep bangin on those doors!!sadly there is very little money in the government coughers, and they spend as less as possible, and only seem to act in worse case scenarios.....never mind, and god my spellings atrocious!!

Hi and welcome!

I tried to reply to this earlier and when I clicked to post my internet connection crashed! Better luck this time, I hope.

Your son sounds very like my 8 year old son who got a diagnosis of Asperger's last year. We are in Scotland and he was diagnosed by the specialist Speech and Language Therapists in the local Community Autism Team. He was also observed and assessed at school by the Educational Psychologist. We were very fortunate in that the school were very supportive and understanding, and in fact it was the school who first highlighted their concerns and suspected AS.

Up until a few weeks ago my son wasn't having any real problems, but in the past week or so he grabbed a friend by the head and squeezed very hard. This incident was prompted by his friend not following my son's elaborate rules for a game he was playing. Increasingly, his tendency to be a black and white thinker, and very rigid in terms of rules have been leading to problems. The school are very understanding and are working with him, me and his new SLT to help him regulate his feelings of frustration. I am now finding the very real and practical benefit of the diagnosis, in terms of support, understanding and accommodations.

I agree that you would benefit from reading through the diagnostic criteria and being able to describe your son's behaviours relative to those criteria. However, in Scotland, and I think the rest of the UK, children are diagnosed according to the WHO ICD-10 criteria which don't include sensory issues, although they are taken into account as part of the larger picture as being co-morbids commonly associated with ASDs.

If you were interested I could send you extracts from my son's assessment report which will give you a better idea of what is looked for in terms of a diagnosis. Send me a pm if you would like me to do that.

Good luck and keep pushing on this one.

I completely understand your frustration, I too found the NHS pyschologist rubbish. They put my daughter's behaviour down to all sorts including lack of loving attention and poor parenting. 6 months after moving abroad she was diagnosed with Aspergers. Then I read up on it and it was so blatantly obvious that this was the problem, I couldn't believe the NHS guys had failed to even suspect it.

I now think that it might be because they work in a different way here. They don't look at the symptoms, decide on an outcome and then send you on you way. They look at the symptoms and then carry out formal, structured assessments for everything it could possibly be until they have the answer. Because of the formal structure, I was asked for information I now know is very important in diagnosing Asperger's that I had never been asked before.

If I knew then, what I know now, I wouldn't give them a list of the problems and let them decide. I would tell them straight, that I believe my child has autism of some description and I want a proper assessment for this specific problem. My nephew is currently being assessed, also after years of nonsense, because his mum has done just that, having gained a bit of confidence from knowing my daughter has now been diagnosed and that they are like peas in a pod.

If they refuse to do it, go somewhere else. You can through to school or through your GP. And if that fails contact the Autistic Society and go through them:

http://www.nas.org.uk/

Also read up more on the symptoms, know everything about it. This is so that you know what to tell them. I missed out giving lots of information because I didn't realise that a lot of the non problematic behaviours were part of the condition too.

There is a full checklist of characteristics here, in a more parent friendly format, ie it actually gives examples of what the diagnostic criteria would look like to a lay person:

http://school.familyeducation.com/learn ... 56323.html