Please or to access all these features

Add post

Watch this thread

Save thread

Start a new thread

Flip thread

Hide thread

My feed

Active Unanswered threads

Getting started FAQ's

Unanswered threads Acronyms Talk guidelines

Hide shortcut buttons

Talk

Chat

Join the discussion and chat with other Mumsnetters about everyday life, relationships and parenting.

Flip

1 2

Original poster

ASD assessment: Wait for CAMHS or pay private?

28 replies

RollinInTheDeep · 20/08/2021 15:09

DD is 10 and has a sibling diagnosed with ASD. DD is quite different to her sister and I’ve always assumed is NT with the occasional doubt.

Having spent the last few weeks solidly with her (I’ve taken time off work for the summer holidays) , not only are my nerves shot but I am very much considering requesting an assessment for her.

The wait time for CAMHS in our area is very long. I’ve contacted a private assessment centre and they could do the assessment from start to finish in around 8 weeks. They have a small waiting list.

DH is not on board with the costs as he is too unsure if DD warrants an assessment. I am also borderline but I think it would be worth it to know.

We are a low income family but could stretch to saving and paying private. DD starts secondary next year.

Would it be a waste of money if she comes back as undiagnosed? (Obviously that would be a good thing).

WWYD?

OP posts:

CorrBlimeyGG · 20/08/2021 15:13

If you can afford it, I would arrange it now, before she transfers to secondary. It's far easier for a child to cope or mask in a primary school environment, but secondary school is a whole other, much bigger, less structured environment. Can you contact their teacher to ask for their thoughts?

Original poster

RollinInTheDeep · 20/08/2021 15:22

Those are my thoughts but DH thinks as she does not struggle in school, then it’s a waste of money paying privately and we should just wait for CAMHS.

OP posts:

stimtoysandpanicattacks · 20/08/2021 15:26

I would say private if you can afford it, because that way if necessary she can have accommodations etc put into place for starting secondary, which as PP notes might be harder for her than primary. If you're not sure, maybe have a look for a holistic assessment that covers ADHD as well as ASD - I'm not sure whether or not they exist for children but that's the adult assessment I'll be having soon.

As an aside, why would it obviously be a good thing if she came back undiagnosed? Whether or not she's disabled isn't a good or a bad thing, it's just a thing

Interested in this thread?

Then you might like threads about these subjects:

10 year olds SEN

foxyfemke · 20/08/2021 15:32

@RollinInTheDeep

Those are my thoughts but DH thinks as she does not struggle in school, then it’s a waste of money paying privately and we should just wait for CAMHS.

Lots of autistic girls do well in school, as they mask very well and at home they tend to melt down after all the masking. This is one of the reasons girls are often undiagnosed or don't get diagnosed until later in life.

I would go for a private diagnosis. If she has ASD then the earlier she gets help, the better. If she doesn't, then you know and maybe they have some advice on how to help her with the things she's struggling with.

Original poster

RollinInTheDeep · 20/08/2021 15:33

@stimtoysandpanicattacks I haven’t worded that greatly . I meant it would obviously be a good thing if she came back with no diagnosis in comparison to being diagnosed. Having a child with ASD means that child struggles in the world . If there is no ASD , then it means DD won’t face the same difficulties as her sibling and that would be a good thing .

OP posts:

Original poster

RollinInTheDeep · 20/08/2021 15:37

@foxyfemke The reason DH is on the fence is because DD does not really appear to be struggling.

However, she is very compulsive and does very silly things which result in her being told off. A lot.

She picks apart our language and takes things literally and is very easily upset, will act very silly in public and talk like a baby sometimes, but she is sociable, sporty, loves to do fun things and is confident.

OP posts:

Fireplace12 · 20/08/2021 15:41

I’m about to pay privately for my youngest DD in regards to ADD. CAMHS won’t assess her as she doesn’t meet the threshold but I’m seriously concerned as to how she will cope with secondary school. It’s a HUGE commitment for me (single parent) but I think for the (possible) understanding it will bring it is worth it.

JumpLeadsForTwo · 20/08/2021 15:43

Just check how the private company does the assessment and whether CAMHS would accept the diagnosis from the company before you pay - not all companies will follow NICE guidance when assessing.

Oblomov21 · 20/08/2021 15:43

Get the GP to refer you to Paed/camhs anyway, your'll need that nhs diagnosis anyway.

If you chose private your'll still want to go back to the nhs ASAP.

ASDmum2 · 20/08/2021 15:51

My kids wish they were diagnosed earlier (diagnosed in late teens), secondary school would have made more sense for them if they had known from an earlier age that they are autistic.

My kids were great at masking. Until they were not. They managed for several years, hiding their difficulties from us, and because they are academically able, they totally avoided any intervention from teachers. This led to serious mental health issues in mid-teens, which eventually led to the autism diagnosis.

As her sibling is autistic, I would definitely seek professional help sooner rather than later. Good luck with it all OP

Original poster

RollinInTheDeep · 20/08/2021 16:04

Does anyone have a rough idea how much cost wise we should expect to pay for an older child to be assessed ?

OP posts:

ASDmum2 · 20/08/2021 16:51

We paid around £1300 for our private diagnosis. It has been accepted for school (not ECHP though, we were too late for that to be relevant) and university purposes.

llmk · 20/08/2021 16:56

I paid £2K for DD assessment and they didn't diagnose her. She was later diagnosed by CAMHS.

Original poster

RollinInTheDeep · 20/08/2021 17:02

@ASDmum2 Was that for all assessments and consultations? That seems quite reasonable.

@llmk that seems quite expensive in comparison to @ASDmum2 . How did you feel knowing you had spent £2k and no diagnosis? Were toy just relieved to know either way at the time? This is DH worry.

OP posts:

Shantotto · 20/08/2021 17:02

We’re considering this. My DS has just gone on the waiting list for autism and ADHD diagnosis. Autism will take up to 1 year and ADHD 2. We could maybe stretch to one assessment, but we don’t know which one to go for! Our doctor said we’d still want to go CAMHS route for ADHD anyway, as if we needed further treatment CAMHS would want to go through their process still anyway to get it on NUS even if the assessment is done to the correct guidelines. We know the place we’re looking at it does do that and they’ll accept autism results from them so I’m really tempted to do that one. His more pressing issues seem to lie more along ADHD though! So tough.

llmk · 20/08/2021 17:26

that seems quite expensive in comparison

I'm in Scotland. The clinic is in Edinburgh. It was 2 appointments. One for just us where they took the early years information and the second one DD had an ADOS while we answered more questions.

How did you feel knowing you had spent £2k and no diagnosis?

Devastated. Ripped off. They wanted to do some extra in school observations at the cost of hundreds of pounds due to travel and time.

CAMHS used the ADOS the clinic had done, alongside the same information we gave them and diagnosed her.

Were toy just relieved to know either way at the time?

No, we knew she was autistic. Had spent 2.5
years trying to convince people to believe us. We went private because we had been waiting for so long. After the bad experience it was another 6 months on before her final CAMHS appointment came through. Thank god I didn't take her off their list.

5zeds · 20/08/2021 17:32

I would wait. You’ll be better off spending the money on stuff for her than getting dx a bit earlier.

Ladyrattles · 20/08/2021 17:42

My eldest has just been diagnosed with ASD. It took 2.5 years on an NHS waiting list, so it is a very long wait. We didn't go private as we'd already forked out 1k for private re-testing for her other conditions to get her uni disability funding. Uni then picked up the ASD. We went private for my youngest's Dyslexia but are now a year into a 2.5 year wait for an ADHD diagnosis for him, which was picked up at college.

Shantotto · 20/08/2021 17:43

@llmk

that seems quite expensive in comparison

I'm in Scotland. The clinic is in Edinburgh. It was 2 appointments. One for just us where they took the early years information and the second one DD had an ADOS while we answered more questions.

How did you feel knowing you had spent £2k and no diagnosis?

Devastated. Ripped off. They wanted to do some extra in school observations at the cost of hundreds of pounds due to travel and time.

CAMHS used the ADOS the clinic had done, alongside the same information we gave them and diagnosed her.

Were toy just relieved to know either way at the time?

That’s awful, sorry to hear that. Do you mind messaging me who you used? We’re Edinburgh based and we’d use the same place I go to for my counselling who our paediatrician seemed to think do a good job!

ASDmum2 · 20/08/2021 20:26

We had 2 meetings, an initial hour long meeting with 1 psychologist to see if they thought an assessment for my kid was even necessary.

The second meeting involved 2 psychologists, part of it involving parents and child, part of it just the child with the psychologists doing the ADOS.

We had a thorough written report and a final follow up meeting.

My kids were relieved to have an assessment and by the time they got one, they were fairly certain themselves that they are autistic. But as I said earlier, they've had a whole gamut of mental health issues throughout their teens which I think would have been avoided if we had been more clued up on autism. But that's just my kids obviously, everyone is different and may deal with their issues fine without an assessment.

annieannietomjoe · 20/08/2021 20:39

I would go private if you can afford to do it - if only for your mental health....if they are masking and coping you prob won't get an EHCP but making the school aware could have massive impacts...for you though the is she/isn't she is gruelling (I waiting 2 years on NHS but first referred at 2 so not as important as not in school and only by chance was it picked up so early as he had hearing difficulties...still horrendous to wait and question everything)...everyone I know in your position I always say go private...the wait is awful! Also if your child is older then can help them understand them self and hopefully counteract the mental health issues many people with ASD struggle with. Good luck!

cansu · 20/08/2021 20:48

What outcome do you want? Is it to help get adaptations and help with school or is it to help her understand why she is different? If it is neither of these things then I would question what the benefit is. I see diagnosis as something that should open doors to help or support. If it doesn't do this and it would cause financial issues then I wouldn't bother. This is coming from someone with two children with autism who has paid for lots of private assessments.

llmk · 20/08/2021 20:54

@cansu

As someone who was diagnosed as an adult I absolutely disagree. It's a medical assessment which is needed because questions have been raised. Parents should not be able to pick and choose here.

TractorAndHeadphones · 20/08/2021 20:55

OP your daughter sounds exactly like me. But I have ADD and not autism. You should get her assessed for both as some traits overlap.

A diagnosis is a label. Its purpose is to a) get the necessary help/adjustments and b) understand yourself.

I was late diagnosed as an adult. But
I already managed myself with techniques I read up on ADD well before an actual diagnosis. These helped massively. The diagnosis wasn’t really needed.

llmk · 20/08/2021 20:55

@Shantotto

Sorry, I can't seem to work out how to PM.

It's a practice in Edinburgh - if it's the same one you will know!

Flip

1 2

Swipe left for the next trending thread