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Original poster

Timescale - AS from 1st assessment to DX

24 replies

yodelayheehoo · 18/02/2011 20:03

My 8 year old DD had her first assessment last December with CAMHS and appointment at CAMHS ASD clinic today. Was just wondering how long the process has been for the rest of you? She has suspected AS.

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Tiggles · 18/02/2011 20:41

TBH I think this is a bit of a how long is a piece of string question. I think DS was fairly quick, but he scored very highly in all areas so there was no question in any of the professionals minds - 1st appt was September for history questionnaire. 2nd appt was October to complete the questionnaire. He was viewed in school in November and had ADOS. Should have had diagnosis meeting early in Dec, but due to snow it was postponed until Jan.
But, he is so definitely AS that they nearly didn't bother doing the ADOS test after viewing him in school. He then went on to score very highly in the ADOS test.

Original poster

yodelayheehoo · 18/02/2011 20:53

She was viewed in school a few weeks ago. They told me today that there is no question that she would be assessed further. It has all happened really quickly. I hear so many stories of people having to 'fight' for a DX.

I feel really overwhelmed by the whole situation. She has always had problems at school, but the first mention of AS came last September when she moved to junior school. Feel really and .

Thanks to MN I have been able to research other peoples experiences and it has helped me so much .

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hotmamalovespavlova · 18/02/2011 21:02

6mths of trying to be taken seriously...then moved and got different Gp & HV.

Gp ref to Paed January 2010, first Paed appointment end of June, multi disciplinary assesment week mid October with dx at the end of that week.

Hope you get some definates soon

Marne · 18/02/2011 21:02

Dd1 was a lot younger when we started the process, we had to wait 18 months for a dx but i think that was because she was so young (2.5 when referred). Sorry i can't be more help but just wanted you to know your not alone and i have been there (with both dd's), i knew as soon as i was shown the list of traits that dd1 had AS, by the time we got a dx i had already excepted that she had it. She's now 7 and coping well at school, she seems to have days where she apears to be normal (i hate using that word) and other days where she clearly has AS but i try and look on the bright side, she is unique, clever and she's my lovely dd1 .

Original poster

yodelayheehoo · 18/02/2011 21:16

Thank you all for your replies. Marne - I can relate to unique, clever and very, very lovely. That's my DD1 to a tee!

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IndigoBell · 19/02/2011 00:21

My Paed wanted to see DS 6 months apart. So while the dx was straightforward and no fighting was required, it actually took a year to get from when I first say my GP - and 6 months from when I first saw the child development paed....

For now, the best thing for you to do is assume she does have a dx.

EllenJane1 · 19/02/2011 00:27

From 1st assessment by paed to dx for my DS2 was 4 months, Nov for history questions and ados type thing to two lots of observations by paed at his SEN pre school, til March. But I guess he was pretty clear cut if HF ASD. Takes longer if more borderline or complex.

pinkorkid · 19/02/2011 09:38

I think we are probably at the extreme end of the "time to diagnose" spectrum... Probably because there were a number of other factors at play and some of the initial problems or diagnoses may have masked or overlapped with asd symptoms, we went from mild hearing loss at age 3, through adhd with mild autistic traits at age 8 to asperger's as the primary need at age 12.

superfantastic · 19/02/2011 09:51

Took us about 8 months from referral but that was mainly due to waiting lists, got a verbal dx on the first assessment in clinic but it took another two months to get a report.

bochead · 19/02/2011 11:09

2 years so far, the process continues,and if I hear the phrase "complex needs", one more time I'll scream!!!!!

Sorry having a bad day as just bumped into the smug Chair of Governors from DS's school.

andperseand · 19/02/2011 13:22

Well, that's an interesting one to answer (trying not to be bitter)

friend's sister spotted it 2 years ago

others said the same from 18 months ago

most professionals would have nothing to do with it (bochead you have my sincere sympathy - 'complex' seemed to mean 'pass him on to someone else and don't actually do/suggest anything helpful in the meantime')

told he did not meet the criteria for DX last summer.

managed to get second opinion referral. That process took exactly 2 months and included all the things that should have been done long ago. Lo and behold he quite clearly DOES have AS.

In the meantime we have a DS so anxious, who hasn't been in school for most of a year, and as parents we are so worn down that there is a big muddle to sort out. And actually he is 'complex' and has been badly let down.

DameEdnaBeverage · 19/02/2011 13:40

Andpers - how did you manage to get a second opinion? Paed said he's sorry he can't help further,gp says " if you're told he doesn't have ASD then he doesn't have it". OT said that Ados would have picked anything up so why do you want a dx that will be life-long? etc..etc.. Am banging head against a brick wall really.

DameEdnaBeverage · 19/02/2011 13:41

Oh and I have an almost full-time statement for his 'complex needs'. Grrr

bettyboop63 · 19/02/2011 14:19

i was lucky in a way ignored by all when he was 2, so took years but then DS was refered to paed this time took 8 weeks for the appointment i had copies of all prev appointments assesments refs with me the paed coppied all of these while we had the assesment with her ,then over next few weeks he saw psyc, SLT, had an ADOS done and within another 3 weeks i was called back and given the dx so took abt 14 weeks once the assesments started

andperseand · 19/02/2011 14:25

DameEdna, will pm you

DameEdnaBeverage · 19/02/2011 14:30

Thanks andpers.

pinkorkid · 20/02/2011 10:16

Two places I've heard mentioned as offering 2nd opinions in complex/not straightforward to diagnose cases are Lorna Wing Centre - see NAS website and Great Ormond Street Hospital.

You will need to persuade either GP or camhs to refer you on.

If they won't then possibly paying for private assessment may be only option.

Original poster

yodelayheehoo · 01/04/2011 23:43

Just in case anyone is still watching this thread. DD received DX of AS today.

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bochead · 02/04/2011 14:43

At least you know now where you stand. Have they made any suggestions to help him going forward?

EllenJane1 · 02/04/2011 22:26

At least you didn't have to wait too long. What is happening at school? Is she getting any support?

Original poster

yodelayheehoo · 04/04/2011 11:57

They gave us some information to look through and told us to contact NAS and our local support group. She already attends CATS, which is an afterschool club for children on the autistic spectrum. Camhs said that the AS is 'mild' in all areas other than social skills, which she suffers quite badly with. They also want to test her for ADHD, we are waiting for the appointment for.

She is very bright and advanced in most subjects and for this reason I am not sure how much help we will be entitled to as far as the school is concerned. I know she struggles to get her class work done in time. Once I have received the report and official DX from Camhs I will make an appointment to see the SENCO at the school and see what can be done.

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Bonkerz · 04/04/2011 12:01

we started CAHMS process in the JAN and after fighting for further assessmensts he had teh ADOS test done in the AUG with formal diagnosis in OCT but this was after fighting to get him assessed for 6 months prior to referral to CAHMS.

(just a little bit of advice) when CAHMS first assessed my son they told me he had ADHD....i didnt accept this and pushed for further assessment which they did over a 3 week period and the results came back he had no issues at all and obviously i pushed again and eventually he was diagnosed with autism and ODD......keep pushing for ADOS and ADI-R tests, these pick up even the milder symptoms.

bochead · 04/04/2011 12:11

I'm sure the anxiety related symptoms of ASD get masked by ADHD type symptoms, especially at the higher, very verbal end of the spectrum by professionals ho might only spend a max of an hour observing a child in an unfamiliar environment.

I'm not in anyway trying to take anything away from those with a dual diagnosis. It's just something I think needs further training and research about from the professionals as I keep hearing of kids diagnosed one thing and then a couple of years later the final diagnosis being changed to the other. The strategies/therapies/cures for the two can be very different at times, so a lot of kids go without the right help for years due to what seems to be a fairly common medical error. Especially in youngr children a lot more needs to be done to remove the margin of error.

Original poster

yodelayheehoo · 04/04/2011 12:46

I agree bochead, especially with the anxiety, I was very surprised when they mentioned ADHD to me. I explined that I couldn't see that in her at home, he said that it was apparent from the school visit that she is very 'lively'. He said it was a very straight forward test which can be completed in 20 minutes, then we would find out either way!

I am so confused about everything, my head is spinning. I just want to do the right thing for my DD.

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