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Straw Poll - how long did you wait for diagnosis?

(63 Posts)
ConstantCraving Mon 24-Mar-14 20:47:14

My DD (4 yrs) is on a waiting list for diagnosis of ASD. The waiting list is approx. one year. I rang the diagnostic centre today to query the length of time and rant about the lack of access to support in the meantime . I think a year is unacceptable given NICE guidance of 3 months but was told that a year's wait is not uncommon across the UK. Really shock?Are they right? How long did you / your DC have to wait?

From first appt with the GP to diagnosis was 18 months.

From first appointment with gp to DX, just under a year. Only because I went private. I'd still be stuck in no mans land and signed off from camhs if I hadn't. They don't like to put forward for assessment until 7 (said another parent, i 'be heard it a lot. Coupled with the 'he's young' was enough for me). Potentially I would have waited 3 years approx.

ConstantCraving Mon 24-Mar-14 21:00:19

On no - not a promising start. I thought maybe we were an outlying under-performing area...

Kingofthevagabonds Mon 24-Mar-14 21:27:41

My ds has been under developmental paed for two years and just been referred for asd assessment at child development centre and have been told a years wait

bochead Mon 24-Mar-14 21:51:25

5 years - I just gave up and got on with it tbh.

ConstantCraving Mon 24-Mar-14 21:55:31

Hmmm. So it's looking like I can't hold them up as failing compared to the rest of the UK (unless of course you are all living where I am grin).

PolterGoose Tue 25-Mar-14 06:38:34

If I count from first contact with SN professional it's nearly 4 years. From formal ASD assessment referral by GP to diagnosis it was around 18m.

Firsttimer7259 Tue 25-Mar-14 09:16:21

From 1st appt with pead over 3 years, from referral to ASD specialist to assessment about 12 months. The specialist was apologetic about the 12 month wait but someone had left the unit and they couldnt cover that job, initially I dont think my DD could ahve been assessed as her ability is very low so it would ahve been impossible to tel if something was a lack of ability or a lack of interest in certain types of things

autumnsmum Tue 25-Mar-14 10:14:40

Speech therapy drop in November 2011 diagnosis July 2012 so right months

HoleySocksBatman Tue 25-Mar-14 12:24:24

DD1: From referral to assessment and dx, 6 months.

DD2: from referral (at age only 12 months) to assessment and dx, 13 months. (dx age 25 months).

DH: from referral age 35 to assessment and dx, 2 1/2 years.

Me: from referral to assessment and dx: 4 1/2 months.

MeAndMySpoon Tue 25-Mar-14 12:45:32

We were extremely lucky here - went to GP with concerns about ASD at about 22 months, was asked to wait til he was 24 months for some reason (it's not like DS2 would have gone straight into an MDA!) and at 24 m he referred us to the community paed, who we saw a few weeks later. He agreed with our concerns and scheduled an MDA, which took place within 3 months and resulted in diagnosis of ASD at 2 years 4 months. He was very clear-cut, so not sure if this made a difference to the speed of diagnosis?

I'm so angry at how long some people here have waited! shock

ouryve Tue 25-Mar-14 16:07:25

From referral by HV to first appointment with paed for DS1 was 6 weeks, but then the diagnosis was finalised within 18 weeks, as was mandatory, then. It took a little longer with DS2, but referral to first appointment was still only a couple of months then the diagnosis, which was a foregone conclusion as he is quite severely affected, was discussed at his next 6 monthly paed appointment.

ConstantCraving Tue 25-Mar-14 20:46:26

Thanks for all the replies - from what most of you have described it does generally seem to be a very long wait, so guess our area falls into the normal range. I was hoping we were an anomaly and I could use that as some kind of leverage sad. It just seems a diagnosis unlocks a bit more in the way of support - crucial as she may start school next Jan (unless we decide to try and home school).

youarewinning Tue 25-Mar-14 22:00:16

Referral was done last May. Saw Camhs in August and was referred for ASD assessment. Spoke to Camhs today who said he's a long way down the list and can't give a timescale.

I'm guessing it'll be............... <not soon!>

Cailleach Wed 26-Mar-14 02:19:07

I saw my GP to ask for a referral in October of 2012 and was diagnosed in January of 2013.

I am surprised by the length of the waits some people in this thread have had for diagnosis...frankly I think it's disgraceful sad

tabulahrasa Wed 26-Mar-14 02:54:39

From referral to first assessment about 6 months...from first assessment to diagnosis, 6 years.

He saw SALT first though, so from first SALT assessment to diagnosis was 10 years... God, that's depressing thinking of it that way.

youarewinning Wed 26-Mar-14 06:18:56

We've had the SALT report and ep assessment is imminent. Just the actual dx bit will be a long time!

OohOod Wed 26-Mar-14 06:32:10

CAMHS have told us approx 2 years from when we start the ball rolling as dd2 isn't clear cut( the worker we saw was v experienced and recognised it straight away the previous one hasn't) and no rush as she's not requiring extra support.

Geneticsbunny Wed 26-Mar-14 11:20:13

4 hours till we had a preliminary diagnosis. It was confirmed about a month later with an MRI. Our childrens hospital is amazing

Geneticsbunny Wed 26-Mar-14 11:20:59

To be fair he has a genetic thing, not asd.

MakingAnotherList Wed 26-Mar-14 14:36:14

DS hasn't been diagnosed yet, but has been referred to local Child Development Centre for joint assessment. Paediatrician will see us again in 6 months, by which time we should have already received a diagnosis as there's not a long waiting list for the CDC. Saw GP at the end of January and referred to Paediatrician straight away. I should know by end of September so 8 months in total.

chocgalore Wed 26-Mar-14 17:29:12

first appointment with dev paed was in March. Dx was given end of Oct. So, 7 months. But I had to fight for 18 months to get Dd refered to dev paed in the first place.

ConstantCraving Wed 26-Mar-14 20:44:58

Agree Cailleach waits are disgraceful. All the literature and guidance stresses the importance of early intervention but I feel like IABU when I query the waiting time down here. I feel I need a diagnosis to move on, I know she has ASD, but every time someone says 'oh she's fine, just shy etc , etc' I have a wobble and doubt myself. Worse is when I try to access support and I talk about ASD and they say:' but she doesn't have a diagnosis, she may not have ASD, she is very young ' and I know they judge me for leaping to a conclusion. I just want everything in place before she goes to primary.

Anniecarrieson Wed 26-Mar-14 21:01:20

Almost exactly the same as meandmyspoon here


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