diagnosis

[jimbob67]

hi. i'll try to keep this short. my 7 yr old son (6 when referred )was not diagnosed as having aspergers, though the pediatrician say's he's on the extremities of ASD. my problem is that they didn't get his mother's ASD questionnaire,( we are separated ), therefore not having all the information they need. my sons doctor has said that she will write but that a re-assessment is doubtful. is this so? and are there other ways of getting my son to be seen. i don't know wether he has any problems related to ASD, but he defiantly has some of the signs that i have read about, especially lack of social skills.

 

thank you.

jim

[baddad]

Hi Jimbo -

 

can't answer whether a 'reassessment is doubtful' because there are just too many variables to guess, but I think a great deal will depend on who is 'seeing' the signs of AS. Does your son live with you or his mum, and who has sought assessment? Has mum not sent an ASD questionnaire because she doesn't 'see' the problems or because of other reasons (i.e. the relationship between you/her). Are there other considerations surrounding the dx - i.e. is there any sort of custody/divorce/access issues that have been raised as pertinent or potentially pertinent to the diagnosis?

 

Lack of social skills is certainly a potential indicator of spectrum disorders, but also a potential indicator of many other things. The same applies to behavioural issues, anxiety issues etc etc etc, and even other things like 'obsessional' behaviour and attention seeking (arising from a need for security), aggressive behaviour (anger)... the list really is endless.

 

I'll be honest and say I'm always surprised by how many children seem to get dx'd during periods of their lives when these kinds of issues are likely to be affecting them, without their impact really being taken into account as explanations for the behaviours. Not suggesting in any way this is the case for yourself, but I've seen situations where kids are being used as emotional pawns in their parent's power-games during divorces etc where quite natural responses on behalf of the children have been interpreted as autism rather than trauma-related reactions to profoundly emotional turmoil...

 

Coming back to your original questionm, I think the biggest questions you (and any professional involved) have to consider right now is why they haven't received a response from mum along with all those other factors I've raised. To push for reassessment while all of those factors are unresolved is likely to just muddy waters further.

 

Hope that's helpful

 

L&P

 

BD

[Karen A]

Hi.

Who did the original assessment ?

Was it an individual paedetrician or were they part of a multi-disciplinary panel ?

Are they the designated professional within your area identified by the PCT as speciailst in assessments of ASD ?

 

Current good practice guidance specifically states that ASD assessment should be undertaken by a muti-disciplinary panel with specialist experience and traing in ASD.

If this did not happen then it may well be worth requesting a GP referal to the team in your area.

Even if it did happen it is still possible to request a second opinion.

There are teams who will conduct assessments where a diagnosis is borderline however they would require a referal from CAMHS or another professional.For example the team at Great Ormand Street will consider referals in this situation.

 

Have you been offered any other help or support ?

Even if the paediatrician was not happy to diagnose ASD they should be able to offer advice and referal to other professionals .

If your son has difficulties in school then input should be provided on the basis of SEN and should not require a diagnosis.

CAMHS should be able to offer some input if there are identified difficulties also without a specific diagnosis.

 

My son Ben was only diagnosed with AS about eighteen months ago.He is thirteen now.He actually had far more input from CAMHS before his diagnosis with AS than since.

 

The latest NICE guidance is still out to consultation.It will not be in its final form until the Autumn.However the draft document may be useful.

 

http://www.nice.org.uk/nicemedia/live/11826/52736/52736.pdf

 

Karen.

Edited July 19, 2011 by Karen A

[jimbob67]

hi. my son lives with me, stops at his mum's 2-3 nights a week. we split several years ago and get on ok. i have had concerns for a while about my son( Kyle )but think his mum didn't or did not want to see any problem, that changed last year when he "flipped" when out with his mum, banging head against wall's, scraping himself, screaming the place down for hours that he wanted to die. thats when decided to see doctor, it was she who mentioned ASD and referred him. why she did not return the form i do not know really, she says she lost it , i think she couldn't be bothered filling it in ( denial again?).

 

the assessment was a individual one. we saw to two doctors, several months apart before the final assessment, only early twenties so don't know how much experience thereof. the final assessment was by the lead pediatrician, a Dr Downes, don't know wether he is recognized by PCT, i assume so. but my assessment was not multi-panel. i was not offered any referral to other professionals. saw CAMHS before final assessment due to fact Kyle harmed and mentioning suicide, they said there was nothing they could do and that we were doing ok trying to sort Kyle's problems out. Dr Downes said he was disappointed in that outcome. Kyle only has problems at school when has to be involved in large groups, especially P.E. where he can be quite abusive and aggressive, (not swearing though)apart from that he is quite intelligent, maths, puzzles etc.

 

thank you both for the reply's. it has helped.

[madme]

Just to say my son was originally diagnosed as Hyperkinetic disorder (severe ADHD), ODD, dyspraxia and asperger traits by a specialist panel at age 6. The lead Psych did tell us that he supsected Aspergers but that we should deal firstly with the ADHD and things would become clearer. To be honest we were probably in denial at first. As we went through the statementing process we were very fortunate that the paedaitrician who saw him said that she felt that he would benefit from a proper ASD assessment. At age 8 they removed the ODD label and said that he was Aspergers- again a specialist panel. Now 16 he has benefited from a lot of educational input. Although I don't agree with labelling - unfortunately they are necessary to access education and support. Good luck.

[Karen A]

Hi.

 

If your son has problems with PE and in large groups and can become aggressive then it may be worth reading around educational issues even if your son is bright.

Ben did not have any recognised difficulties in school until he started in year 3.He is very bright and it was thought he was just a bright lad with a bit of an atitude at times.

 

It was a very long and complicated process for us after things deteriorated very rapidly in the later years of primary school.However after much debate Ben was diagnosed with AS about eighteen months ago.Although he is very able in some subjects he has a Statement of SEN and requires significant support in school.This is mainly because secondary school can be a busy and complex social environment with many transitions and different teachers.

 

As it takes so long to build up evidence of a need for support /SEN it may be worth exploring further now.

SEN can include all areas of the school day and not just lesson time.

 

Karen.

[jimbob67]

thank you for your advice. made an app. to see Gp again to enquire about specialist panel and SEN. my biggest fear is when he goes to high school as i know he wont be able to cope with such a large environment, ( primary school is small). the pediatrician also stated that he would find high school difficult as well.