Active discussions

Meet the Other Phone. Only the apps you allow.

Meet the Other Phone.
Only the apps you allow.

Buy now

Please or to access all these features

Talk
AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To ask if you have a child with autism or on the pathway, How long are assessment wait times in your area?

141 replies

Crispymandm · 04/03/2023 07:30

Just curious to see how long nhs assessment takes in your area after referral , and if your child was offered support after diagnosis?

OP posts:
ManxRhyme · 04/03/2023 08:23

May I ask for those who got a diagnosis but no support, was the diagnosis worth it? I mean, on hindsight would you have chosen to just assume ASD and carry on instead?

FunkyMonks · 04/03/2023 08:24

My DS was 2 years old when I started to suspect we finally got confirmed as having Autism at 4 years old.
I had started it just before covid hit and then it was lots of online appointments.
It was hard because we couldn't see anyone face to face it felt like forever trying to get the help after he was confirmed as having Autism, we live in Wales.

Tanaria · 04/03/2023 08:24

8 years from first GP visit to final diagnosis. Mainly because the first trust that dealt with the assessmant was dissolved and we had to start again, then Covid brought a stop to it.

FunkyMonks · 04/03/2023 08:26

Sorry support was offered speech and language and Cass all of which are now no longer involved no need for them now.
He has one to one support in school but both the school and ourselves are trying to increase the hours of support he gets from the useless council.

Oddgirlout · 04/03/2023 08:27

Anybody know what would happen if you moved during that process? While you’re waiting? Would you have to start again?

FunkyMonks · 04/03/2023 08:30

Support was sparse though due to covid and many excuses given time and time again also we struggled and there were so many speech and language therapists as they kept changing I struggled and in all honesty my son only seen them face to face twice once at the beginning of his referral and then at the end when they decided they could no longer do any more his speech had come on so much and again I credit that to his school
And his little sister and us as his parents.
As pp said we just got given lots of websites to look at as well as being put on an online course to understand autism and how to help with meltdowns sleep diet etc.

roughtyping · 04/03/2023 08:31

My son's time from 'referral' to diagnosis was 6 weeks. I say 'referral' because he is under a paediatrician for something else so she arranged and carried out the assessment with another HCP. At diagnosis we were told 'that's the last you'll see of us regarding autism, everything goes through school.' We were handed a list of websites. Helpful!

FunkyMonks · 04/03/2023 08:34

@ManxRhyme it was worth it because you get the support needed in school you can also get some understanding on how to best support your child for me it was worth it to have it documented on his medical records.

I felt and still feel like I did the right thing for my DS getting his diagnosis to best help support him in education and adult life.

Awayyego · 04/03/2023 08:34

Diagnosis is always worth it IMO. DD is about to go to university and it’s much easier for them to get funding for her support with a diagnosis. It also protects them under disability discrimination laws with reasonable adjustments in work. It’s way more difficult to get a diagnosis as an adult. We were about 3 years waiting and I was worried she would age out of children’s services before she got her diagnosis but we got there.

MyOtherUsernameIsDave · 04/03/2023 08:35

ManxRhyme · 04/03/2023 08:23

May I ask for those who got a diagnosis but no support, was the diagnosis worth it? I mean, on hindsight would you have chosen to just assume ASD and carry on instead?

No I would never have assumed and carried on without it. I mean, you wouldn’t do that other medical conditions.

It’s a useful tool not only for them later on in life, for work for example, but at school. Yes school should be adjusting to their needs anyway but it’s more difficult without that diagnosis. My eldest did their sats in a room appropriate for them, they have sensory needs so they have ear defenders and need movement breaks, they attend the Elsa counselling programme through school and a whole host of other things which they may not have got if they didn’t have an official diagnosis. It also means if we need to whip out the autism card (and I hate that expression) we will do.

There isn’t a lot of support out there at all, but it’s certainly helpful to have something concrete. Also for the child, as so many autistic children were labelled as naughty or badly behaved and it helps them understand that they are neither.

BeanCounterBabe · 04/03/2023 08:35

My DD was diagnosed at 8. It was 21 months from me visiting GP with my concerns to diagnosis. I hear it’s 2 years ish wait now. Weren’t even given any leaflets or anything at diagnosis. Later when I tried to get a CAMHS referral due to MH we were referred back to child development centre who diagnosed and got a course of counselling which helped. DD now 15 is about to start CBT. She gets an annual appointment with specialist nurse.

The most useful thing about diagnosis is that DD understands she is ND and we can all work around that. I think her MH would be completely in tatters without a diagnosis. As it is she is doing well with great support in school.

Spendonsend · 04/03/2023 08:36

ManxRhyme · 04/03/2023 08:23

May I ask for those who got a diagnosis but no support, was the diagnosis worth it? I mean, on hindsight would you have chosen to just assume ASD and carry on instead?

Yes it was for us. Everything education and DLA wise is supposed to be needs led, not diagnosis led but the diagnosis is a big long document of evidence of needs. Which both education services and dla believed over me saying 'he has this challenge' if that makes sense. Also his eventual school had a diagnosis as an entry criteria.

LittlePinkPill · 04/03/2023 08:37

Over 3 years wait initially, another 18 months for reassessment after 2 assessors had a different opinion, then bugger all support.

fairgame84 · 04/03/2023 08:38

ManxRhyme · 04/03/2023 08:23

May I ask for those who got a diagnosis but no support, was the diagnosis worth it? I mean, on hindsight would you have chosen to just assume ASD and carry on instead?

Yes because children need a diagnosis of ASD to attend the school that DS goes to. Without the diagnosis he would have been dumped in a pupil referral unit.

SoonToBeQueenCamilla · 04/03/2023 08:38

About 6 months from referral but child was under 5.

zero support afterwards , but chick was able to get accommodations in school. In theory these are based on needs and not diagnosis but it often doesn’t work that way , as you can’t get then to assess your child’s needs.

motherofkevinnotperry · 04/03/2023 08:41

3 years of fighting

SpinningFloppa · 04/03/2023 08:43

ManxRhyme · 04/03/2023 08:23

May I ask for those who got a diagnosis but no support, was the diagnosis worth it? I mean, on hindsight would you have chosen to just assume ASD and carry on instead?

My ds is not diagnosed but yes this is what I’ve decided to do. He wouldn’t have got any support and nothing would have changed if he had a diagnosis he’s aware that it was suggested he’s autistic.

Shivermytimber · 04/03/2023 08:45

In the end we had private assessment as DS was suicidal and the NHS wait was 3 years. Since diagnosis we have had no support but DS mental health improved significantly as now he ‘understands why he is different” these were his words. We did lots of reading and drastically changed our parenting style which has helped enormously.

Justmemyselfandi999 · 04/03/2023 08:47

Everyone that is waiting, look into Caudwell Children. Assessments can be completely funded, they meet the NICE guidelines so are accepted by NHS and all relevant partner services.

Singleandproud · 04/03/2023 08:47

4 years here. We've gone private 12 weeks from first making contact with the clinic to diagnosis. Worth the £2300 as DD would be 17 by the time the 4 years is up and I'd bet she'd be moved onto an adult list instead and start from the beginning.

JomonotFomo · 04/03/2023 08:52

3.5yrs. DC2 is on the waiting list now. Started the process in Y7, will likely be Y10 before we see anyone.

Dc1 was diagnosed aged 17 in 2017. We got a print out with a list of groups (for much younger children) and some websites. We did get additional support with the anxiety and depression until 18.

karmakameleon · 04/03/2023 08:54

ManxRhyme · 04/03/2023 08:23

May I ask for those who got a diagnosis but no support, was the diagnosis worth it? I mean, on hindsight would you have chosen to just assume ASD and carry on instead?

We assumed ASD and acted as such while we waited for the diagnosis (three years after referral in our case). However, a few things changed once we had an official diagnosis:

  • Everyone involved in his life that didn’t believe us suddenly shut up so no more battles with family, friends, other people who took care of him and who refused to see it and implement the strategies we were suggesting.
  • School got onboard. They were pretty decent before diagnosis but only implemented certain things on recommendation of the professionals (to be fair these were things I hadn’t considered myself).
  • We told him and he suddenly understood himself better. This was the biggest difference as he was old enough to understand why and how this was causing him difficulties and find ways to help himself.
ManxRhyme · 04/03/2023 08:55

Thanks for those who have replied. My question was specifically referring to those who have said they got no support so I suppose if your child got adjustments made or a specific school that is not quite the same.

I am pondering because we are awaiting assessment but an EHCP isn't likely. So apart from a diagnosis not much will change in terms of external support. There is also the likelihood of moving countries on the horizon and a diagnosis will affect our ability to get a visa, which will be ironic as emigrating will actually gain my child more support in the new country.

Igenix4 · 04/03/2023 08:56

Roughly 2 years, bare minimum of support

spidersenses · 04/03/2023 08:57

My daughter went into the referral list in 2018....still heard nothing. No support

Swipe left for the next trending thread