How long does diagnosis take

[natwood]

Hello Every1,

 

Was just wondering how long does it actually take for diagnosis? Also what processes do i/we need to go through!!

 

My son was reffered to calms by my gp in May. We met with camhs in July. Camhs person went to my sons nursery last week and now i have an appointment to go back to camhs on the 24th of September!

 

Am not expecting a diagnosis this early but wondered what happens, what to expect ect! Am all new to this. I don't know anyone who has gone through this and all of you are obviously experts!

 

Please help xxxx

Edited September 7, 2008 by natwood

[bikemad]

I think it varies from county to county from what ive seen but with me my ds was referred to cahms by the doctor last Dec after asking for it for 5 years.....he just had an unofficial dx but it will be in writing at the next appointment and also find out what meds he will be on.

[pookie170]

Hey Natwood,

 

not that sure I fall under the title of expert but I'll try to help anyhoo!

 

There's no real hard and fast time frame for diagnosis, I've found. My son was referred to CAMHS in Primary 1, aged 5, and there have been many visits back and forth ever since. DX came about 6 months, give or take, after our first meeting. Well I say DX, but because Cal has co-morbids and isn't a textbook aspie (who the heck is though? Every one's different, for crying out loud, so WHY do professionals expect all aspies to display the same traits???) it took considerably longer to actually confirm their first, tentative suggestion of a DX. However, even with a possible DX, help and support can be put in place, and most importantly for Cal, a more suitable educational placement was found.

 

Diaggnosis can take longer, and I've found one of the biggest problems is when a multi-agency meeting is required as getting school, CAMHS, doctor representatives altogether in the same room at the same time is a nightmare- I'm just glad the logistical stuff didn't fall to me!

 

I'm not sure what you mean by processes, but you will probably be expected to learn and try new coping techniques or strategies to help deal with problem behaviours and suchlike. (I apologise if my wording offends anyone, I have a dreadful cold and I haven't slept well, so it's like thinking through cotton wool here!) You may well be asked to keep note of when certain behaviours occur, what happens during, what triggered the behaviour and so on.

 

Have you had a home visit? Home observations are very usseful for psychologists to gain information on a child's behaviours as, (and I don't know what your son is like, but this is certainly true of mine!! And how!!) a child often pesents very differently in the clinic than they do at home. EVERY time we went to CAMHS, my son would transform into this shy, eager-to-please little cherub- wouldn't say boo to a goose, let alone take off on one of his famous rampages of destruction!!

 

His psychologist went out to observe him at school. We went back a fortnight after.....

"Well!" she said, brightly. "I see exactly what you're all talking about now! Someone's been hiding his light, eh?"

 

Quite.

 

Anyway, I don't know if I've helped or confuzzled you more, but I do wish you luck during the DX process. Its a bit of an emotional rollercoaster, and I often found my gut reaction to be the opposite of what I'd expexted- but you can come here anytime for a bit of support and empathy.

S'a good place, with nice people, this.

Take care,

 

Esther x

[kirstie]

I'm sorry if i've missed earlier posts saying how old your son is and what kind of diagnosis you think they might be looking at? If it's ASD then i reckon you are with the wrong bunch in CAHMS. Having gone down the route you are right now (i'm from Edinburgh too by the way) when my 9 year old was about 4 and i was none the wiser as to who diagnosed what. They don't actually diagnose ASD's that is done in the Communication Clinic and i will tell you via pm exactly who to ask for and a phone number if you like. First thing's first- does your son have a speech therapist? If not ask for a referral ASAP as Communication clinic need a report from them (as well as any other from professionals involved with your wee boy if there are any) and then they can issue you an appointment if deemed necessary. Local CAHMS weren't much help at all...sadly it seems quite common all over with CAHMS teams (i am sure there are some who have had positive experiences though). Anyway once we got to Communication Clinic a diagnosis of Aspergers was made and that was when my son was 4.5. So when my next son who is now 3 was showing some signs i knew exactly who to phone and he was diagnosed with Autism very quickly. My daughter is now 17 months and is having her assesment next month as she is most certainly on the spectrum too- with her it has taken since March/April as paed wanted to monitor her as she was still so young but Professor who knows my boys (dx them) has pulled her file and wants to see her. So for us not long, but it is easier if you know who to phone and where to get the help it always helps. It is so hard when you don't know who is who and what team does what.

If you'd like some more info let me know and i'll pm you.

Edited September 8, 2008 by baddad
specific references to professional services removed in line with forum rules and guidelines.

[NickyB]

Hi, natwood

 

I don't know if this will be of any help, but here's how it went with us :

 

DS (who's now 5) was initially referred to Speech and Language Therpaist in Sept '06 by his teacher at nursery, as she had concerns about his speech and social development. Also refered him to Social Communication clinic and pre-school SEN co-ordinator.

 

Went to Social Communication clinic in Dec '06 and to speech and language therapist in Feb '07. Both recommended he be seen by Child & Family services for expected ASD diagnosis.

 

Went to diagnosis meeting in May '07 and he was dx with high-functioning Autism

 

From what I see on this forum, we were very lucky to have a dx so quickly. We haven't had any contact with CAHMS, so I don't know how it works with them.

 

The only advice I can offer is to keep up to date with what everyone's supposed to be doing, and pester them relentlessly if you need to!

 

Hope it all goes well and you get some answers soon

 

Nicky <'>

[chris54]

Took us about 2 years.

Where we like now recons 6 months??

 

Good luck.

[kirstie]

I agree with Nicky, pester and pester them and then pester them a bit more. I will always maintain the ones with the biggest gobs and all that........Don't be afraid to pick up the phone and tell people you are free for any cancellations (i did, my elder son with Aspergers was seen 3 months earlier than his initial diagnosis appointment would have been )

[teachermum1]

Seen in the summer initially and tentative dx was made on that day. The hold up was waiting for the ADOS test - they won't formally dx here before having an ADOS test and the waiting list here is huge! That happened in the December and then the dx was the following week. So that's about 6 months (but he had been in the system ages, having already been dx'd with ADHD and having already got a Statement)

[Karen A]

I'm sorry if i've missed earlier posts saying how old your son is and what kind of diagnosis you think they might be looking at? If it's ASD then i reckon you are with the wrong bunch in CAHMS. Having gone down the route you are right now (i'm from Edinburgh too by the way) when my 9 year old was about 4 and i was none the wiser as to who diagnosed what. They don't actually diagnose ASD's that is done in the Communication Clinic and i will tell you via pm exactly who to ask for and a phone number if you like. First thing's first- does your son have a speech therapist? If not ask for a referral ASAP as Communication clinic need a report from them (as well as any other from professionals involved with your wee boy if there are any) and then they can issue you an appointment if deemed necessary. CAHMS i found, were little more than a waste of my time, patronising unhelpful and made me feel like the worst mother who ever walked the face of the earth (strong, but true) and there are other Mums here from Edinburgh who have been through exactly the same with them....sadly it seems quite common all over with CAHMS teams (i am sure there are some who have had positive experiences though). Anyway once we got to Communication Clinic a diagnosis of Aspergers was made and that was when my son was 4.5. So when my next son who is now 3 was showing some signs i knew exactly who to phone and he was diagnosed with Autism very quickly. My daughter is now 17 months and is having her assesment next month as she is most certainly on the spectrum too- with her it has taken since March/April as paed wanted to monitor her as she was still so young but Professor who knows my boys (dx them) has pulled her file and wants to see her. So for us not long, but it is easier if you know who to phone and where to get the help it always helps. It is so hard when you don't know who is who and what team does what.

If you'd like some more info let me know and i'll pm you.

 

Hi.I know that procedures for Dx ASD do vary from one area to another.In some areas the role is provided by Child Development Team.In the area I live in the Dx for older children is provided by CAMHS who are excellent and very experienced indeed.We are awaiting confirmation regarding Dx of AS as I have posted elswhere.We have been in the system for three years but Ben's case is very comlpex.Karen.

[kirstie]

Just to re-iterate on the pestering thing, my daughter was given her appointment for Communication Clinic in October and i phoned telling them i will happily take any cancellations. The lady made a note on the computer and i got a phonecall yesterday saying could we come in next Friday???? Yay- i know it's only a month earlier but i'm really pleased as i really can't cope with the waiting/not knowing thing. It just shows you though if you're prepared to get on the phone it can pay off!