Diagnostic process for Aspergers

[mum22boys]

Hi I am new to this forum but am glad to have found a UK site that I can relate to. I am after some much needed guidence to the diagnostic system.

I have a 5 year old son who we think may have Aspergers. He has shown autistic traits since he was two. He can not accept change, he has obsessions (the latest one is electrical wires!) he has difficulty with communicating with other children. He has adapted well to school now but he has been there for 2 years so he has got used to it. It wasn't all plain sailing though, when he started he didn't speak to the others, he stood at the sand continuously, he refused to join in PE and he screamed when they left the classroom. He now accepts the children in his class and speaks to them but if he sees them outside of school he doesn't acknowledge them at all. he has terrible tantrums and a possible auditory problem.

Anyway (sorry i'm rambling) I went to the GP and he was referred to CAMHS. There was a six month wait but we struck lucky and he was seen in 4 weeks. The pyschologist agreed he was showing signs of Aspergers - but didn't know what to do with him!!! Eventually after me pestering her she got his case discussed by the peadiatricians and they said he needed to be referred. It took her 8 weeks to decide this. I now have a letter to say he is being referred to the hospital peadiatric dept.

Can someone please explain the process we have to go through to get diagnosed.

[Brook]

Hi,

 

my son was reffered to the community paediatrician, he had a developmental assessment (age 3), then we saw her three more times where she took a very

detailed history of my son. His case was then put before a diagnostic panel (sorry cant remember the proper name for it) and then we were told the dx ASD.

I'm not sure if it's the same procedure in all areas, but if theres one bit of advice I can give, it is to write down all the things you are and have been concerned about, they need to know as much as possible.

 

The whole process took a year for us, but I know it varies an awful lot.

 

Brook

[anxiousmom]

Hi,

 

Sounds like we are in a similar place. I too have a 6 year old son who we are having checked out for possible aspergers.

 

I spent a lot of time looking about on the net in various places and one thing that I keep being told is that only an asperger's expert can diagnose this. I was even told this by an Autism expert - that really I ought to get the aspergers expert to see him.

 

I called the autism helpline and they sent me a list of experts in my area. This came to nothing so I extended my search on the PARIS website (www.info.autism.org.uk) and found another - I checked this out with the really helpful guys on the helpline and we are booked up to see someone in 2 weeks time. Luckily we have insurance that has agreed to cover the diagnosis.

 

I've rambled a bit, but the jist is to make sure you see an asperger's expert. Find out who you are seeing and check them out. There's bound to be someone else here who's been through it but if you want to pick my brains further then just drop me a PM.

 

Good luck.

[darky]

it does vary from area to area. i have 2 children who have both gone through a full asperger assessment here, in dorset.

first, we had to fill in behaviour and socialisation questionares, the school had to fill them in too.that is scored. we then had to see a consultant where extensive history was taken. they got referred to occupational therapy and physiotherapy for assessments of motor skills and perception. then it was speech and language therapist who look for "higher order language kills" difficulties, literal interpretation, understanding sarcasm and receptive language skills. that was complicated! and finaly, the educational psycologist does a full assessement of them in school. eventualy, when all the results come in (after about a year) the whole "asperger team" get together and discuss diagnosis, and then with us parents. its a very long road, only trouble was, with our daughter, who is 6 now, they decided after all the assessments, it was too difficult to assess her properly, so they have come up with an interim diagnosis until shes old enough to assess her properly at about 8 yrs old!

[phasmid]

There are hundreds (or so it seems) of American websites that are related to ASD's, but good UK based ones are very few and far between. This site is brilliant. Many things ASD are the same the world over, but specifics, like schools and so on, aren't. You'll find this site an absolute mine of valuable information.

 

As to your question well, it can vary tremendously from area to area. In my case we put our case to our GP and 6 months later had the diagnosis. I am well aware that a diagnosis made that quickly is very, very rare. 1 - 2 years is about the average. The diagnostic procedure varies from area to area too. Much depends on the specialist you see. I will say that, at least in our case, we were interviewed about Phas jr at great length as part of the process. It was mentally exhausting.

 

You will find that as things progress you are going to have lots of questions you need answering. All I can say is you have found the perfect place to ask them. Welcome to the board.

[BusyLizzie100]

Hi. Everyone seems to have a different story about dx and it seems to vary so much depending on where you live as well as what your kids are like. Our story is this:

After my middle son was diagnosed with Sensory Integration Dysfunction I started reading up; when I asked whether it was possible he had autism, they politely laughed in my face. A couple of weeks later, his paed asked him to come for an appt and suggested she gave him a 'working diagnosis' of autism while she referred him to a specialist team at Guy's hospital. We waited nine months for the appt and he was given a diagnosis of ASD.

Meanwhile, we started to recognise that his older brother, also with Sensory Integration Dysfunction, was similar but different. Similar enough, however, for this same paed to give him a diagnosis of Asperger's when we asked to see her. We asked for a more detailed dx and he was referred to a multi-disciplinary team local to us. We waited seven months and have just had his first assessment - they want to see him again for cognitive tests and to observe him at school and in the playground, but the dx so far is Asperger's, possibly with ADD.

None of this has been any surprise to us, in fact as parents we seem to have been ahead of everyone else in figuring out what is going on with our sons. If we hadn't pushed for referrals etc, they would still be floundering (or at least, more than they do now!) Official diagnosis is painful but such a relief.