My DD has been on the CAMHS waiting list for 51 weeks. Now what?

[WhatToDoNowThenNow]

As the title says, 51 weeks of waiting on the CAMHS list; she has not had a first appointment yet. DD has suspected ASD and this was the point of the referral.

I’m aware there will be priority emergencies taking appointments and this is fine.

If DD ever gets to the top of the list , what will happen next? If it is agreed she will go on to the ASC pathway, do we start again on a whole new never ending waiting list? Or does assessment start right away?

My nephew was diagnosed with ASD by CAHMS. Waiting lists aren't as long as in our part of the country but once he was diagnosed they immediately discharged him and won't see him for any other issues now as everything is attributed by them to the ASD. They are useless.

I agree with PP. CAHMS are useless in our area too. In fact someone has written a scathing review about them on Google!

Pre covid times, after the initial appointment, which was at round 18 months, we then waited forever for assessment. After around 8 months we took to phoning them monthly to ask if DC was anywhere near the top of the assessment list yet. Even then it was months and months of phoning before being seen. Horribly under funded and over subscribed. Once given the joint diagnosis of ASD/ADHD There was little help. Just a prescription and annual height, weight and blood pressure check by a bloke who destroyed DC’s confidence. I’m so angry.

Same for my DS. Diagnosed, discharged, end of help.

I am fully expecting them to be useless and to discharge us as quickly as possible. I do not however, want to wait another year once they agree to put us on the pathway .

CAMHS is usually split into a number of different pathways, so the ND department wont maintain a plan or interventions for a child who needs interventions for anxiety for example, its a different part of CAMHS, you need to make sure the referral is re made for that

There isnt 'treatment' for ASD and ADHD can often be medicated but there isnt other intervention as such for it.

Where I live the waiting list is 3 years from referral to assessment for ASD

@bellac11 If the waiting list is 3 years from referral to assessment, does this mean once we are on the pathway, we are likely to wait another 2 years?

I think it probably depends where you are. There's often a triage appointment to determine whether Camhs is the right service or not and then you might be put on another waiting list or signposted elsewhere.
As ASD isn't a mental illness they generally don't keep people open after the assessment as it's not something to treat - other organisations often have more appropriate post diagnostic supports but again depends on the area you're in

I dont really know what you mean by 'on the pathway'

The usual way of it is that a referral will be made to ask for an ASD/ADHD assessment. You'll be the sent the screening tools which should be completed by a number of professionals and yourself, and the child if old enough to triangulate the information. CAMHS will then decide to assess or not assess, its usually 3 years until assessment.

That whole process is within the ND department in CAMHS, but each area must have its own processes.

I feel rather deflated we will have waited over a year for a triage appointment .

Who made the referral and was it for an ASD assessment?

Have you done the screeners?

@bellac11 She is not at the stage of requesting an ASC assessment yet; we was told to ‘self refer’ . I filled in some forms (not specific to ASC) and we’ve been waiting ever since. Once we are triaged, they will then decide what to do with her. I concerned she will then be added to another never ending waiting list for assessment .

What is it you referred for then?

when you say 'she is not at the stage of requesting an assessment' who are you talking about, your GP?

As someone said above, CAMHS is a MH service, not an ND service, in some areas they are lumped together, I assumed it was the same for all but sometimes we work with other areas and I found out its not the same everywhere

We were on the waiting list for asd for 2 years. After the first appt he was put in the waiting list for the adhd pathway. 4 years later we are still waiting. I have no idea what the point is now. But we're still waiting.

@bellac11 I specifically told the ND team I would like to have her assessed for ASC as her younger sibling was diagnosed through them.

They told me I had to self refer to CAMHS; I then told CAMHS I wanted an ASC assessment for DD. I queried with the ND team if CAMHS was correct as this didn’t seem right to me , they said it was correct.

As I understand it, I will now wait for CAMHS to triage DD and decide whether she will be put on to an ASC pathway to await assessment .

What I don’t want to happen is to have to wait another 2 years from the triage appointment to get an assessment but by reading the pp’s , it seems this is likely to be the case .

In our area, it's a 1-2 year wait. Absolutely ridiculous. We went private.

Waiting lists are so long here that CAMHS won't even provide an estimate of when you will be seen. In reality it is far over two years.

Good luck, in our area its at least a 3yr waiting list once you have been triaged and an 18 month minimum wait for triage.

If you were hoping the CAMHS referral would help facilitate things at school, I would just start the process for an EHCP regardless - you don't need to have a diagnosis to be successful, fortunately.

Im struggling OP to make sense of your posts

The ND teams usually sit within CAMHS, how did it come about you were in contact/liaison with them? If you were 'open' to them a referral must have been made in the first place surely?

Im surprised that they didnt send screeners already but perhaps they dont send them immediately as a matter of course where you are

In a nutshell though yes, several years of waiting

Mines been on the referral list for years ver 3 years for ADHD. I don’t blame them, I blame the deliberate under funding.

My daughter waited a relatively short amount of time for her CAMHS appointment (6ish weeks) for them to say she needs to be on the social communication pathway and the wait for that is 18-24 months and she would just have to wait again. So we're waiting...

Do you have confirmation that she is on the waiting list?

Where I work it is about 3 years wait from point of referral to starting assessment unfortunately

We went private too.

A month from deciding to assess to diagnosis.

It cost £2k which was part funded by AXA insurance.

I realise this was a privileged position to be in but it would have exhausted us waiting so long for camhs.

If the CAMHS service is seperate from the ND service it's likely that a referral request for ASC assessment has to first go through CAMHS so that a full assessment of needs is carried out. If, at that first assessment, the clinicians think that screening for ASD is helpful/necessary they would then supply the screening forms to parents. The screeners also include forms which a teacher at the child's school should fill out as well as a form to answer other questions about the child when in school.
When CAMHS have the forms back they are scored. If the child scores for ASD assessment a referral to the ND team takes place and if there is no Mental Health issue present at the time of assessment that referral is closed to CAMHS.
The ND team then take it from there.
That's how it works in my area. If the child has both a mental health need and need for assessment of Autism, they would remain open to both teams.

So, unfortunately, @WhatToDoNowThenNow it may mean you have quite a wait. On the other hand, if there is no reason to assess for ASD you will know very quickly.