How is a diagnosis of Asperger Syndrome done?

[AWhaleOfATime]

I have ds who is 7yo now. I suspect he has AS.
I would like to start the process to have a diagnosis for him and was wondering if you could tell me what is involved/time scale. Is it very energy draining?

Atm my understanding, is that you can either go through the GP or through the school and the Ed Psy. But ds is very quiet and not a bother at school so unlikely to get anywhere through that channel.

In our area it is via CAMHS. You can ask for a referral, or I think you can even self refer.

It is quite time consuming. Our ds1 has been down as probable ASD for years, and we've just started the process of seeking a formal dx. The first appointment was hour and half, and we were told it is a 6 month wait for a psychologist who could assess in our area.

They sent us away with a questionnaire to be filled out by us and the school. Our ds1 isnt a bother at school neither, he bottles it up for at home. But CAMHs were very good at understanding our problems and it was draining for ds1, but I found the initial meeting quite positive.

If you google your local CAMHs service you should be able to see about self referal. Ours was done via our paediatrician, as ds1 has been under them for years now.

Thanks! I will have a look at CAMHS where we are and see what is going on.
I am still not sure if having the diagnosis is necessary. I am aware that ds will not get any help at school.
It's probably more about me being reassured that I am not 'imagining things' and giving the most appropriate support I can to ds.
Also, the fact that when he is older I can explain to him what is going on so he has a framework to work from (ie there are reasons for some behaviours or difficulties).

but then I am worried about the fact it will be draining for ds and for me.

Things might well change as he gets older. My ds was fine at 7 in school with the support they gave him, but it got a lot harder as he got older.

I don't think a dx is the be all and end all, it is more about meeting the needs. DS1 first got into the system where we live now at around 4 years, he went for a multi-disciplinary assessment and he has been under various specialists (SALT, physio, OT, orthotics, etc) who have supported him and taught me how to support him. He only got his first formal dx last year I think! The dx bit only really became important when we realised without it ds was never going to access any more support at school, and for the longer term as he will need support as an adult too.

I think I'm quite relieved that I didn't try to push through this process at an earlier stage, because as he has got older we do have a far clearer picture of what needs he has and where he is at.

Yes this is really about support isn't it.
Fortunatly, ds doesn't need major support atm. He did last year and in effect his teacher (+TA etc..) have done the work of a SALT with him. He was refereed by the school at the time but we were told, 'he is progressing with what is in place so we will not do anything'...

Apart from the 2 meetings (one with the first appointment and then with paed) is there any other meetings for the diagnosis to be in place?

I'm sorry if I have confused you. You don't have to see a paed if you are referring yourself to camhs. We were referred to the paed by a HV when ds1 was much younger due to developmental concerns. It was the paed that referred us to cahms.

So you would go to CAHMs, they would do the initial assessment, 90 minute appointment, and then possibly refer to a psychologist, and/or whoever else they felt would be beneficial.

I very much doubt though, one or two appointments would be sufficient at all for them to make a decision. They are most likely to want to consult various professionals, and maybe even observe over a period of time - we've seen so many professionals over the years, we've already got a nice stack of reports to show CAHMs. Some assessments may be done in school too. We've had school assessments by the ed pysch and our Occupational therapist.

Oh OK, so much more work involved isn't it?

I was expecting the ed psy to be involved too.

Thanks for the info. That's all good to know!

Hi whaleofatime

You will find that there is much more footfall on the Special Needs Children board.

The process all depends on where you live and the process there.

Where we are you see a Developmental Paediatrician who performs a structured interview, your child has an Occupational Therapy assessment and a Speech and Language assessment. You and the school both complete questionnaires and then a panel of the Paed, the OT and the SALT all decide whether to give a diagnosis.

The EP cannot diagnose Aspergers.

I recommend that you go to your GP and ask to be referred. Take along a list of your concerns to the GP.

The whole process took us over a year to get a dx for our DS. All the best.

Thank you.
Can I ask what changed after the dx? Was it really worth doing?

Well we only got his dx last month but we have been treating him as if he had the dx for a while now as it makes it easier for him - direct instructions, reducing sensory input, visual instructions etc.

However for school it means that they can get the ASD outreach teacher in to work on strategies, for me it means that I feel happy to join ASD groups and for him it gives him a name for the reason that he finds some things more difficult than others.

We had two 2 hour meetings with camhs followed by an ADOS test. The whole process was 4 months from our first meeting at camhs.

I went the GP route. I wrote a long document listing areas of concern. It helped that on the day we went to the doctor my dd decided that eye contact was totally out.