Surely this can't be right, SEND assessment waiting list

[Jennybeans401]

Dd is in Year 5 and has struggled for a long time, school think she has autism. I'm struggling with her at home, she's burned out from masking all day, needs to stim but won't do it at school and lots of other sensory issues.

I met with the SENCO a few weeks ago and she's scheduled a meeting to fill in all the forms for CAMHS. This will be in two months, it seems a long time. She then said that the school have to do two terms of intervention before they refer for an assessment as may not be needed. If there's still an area of need they can then refer.

There is then another 18 months waiting list!! Surely this can't be right?!

Two terms of "intervention" is nonsense made up by the school to keep kicking the can down the road.

Go directly to your GP with your list of concerns, they can refer you directly to CAMHS. Yes there will be a long wait for a referral but in the meantime do as much research as you can about supporting your child at home and school - the SENCO can put reasonable adjustments in place without a formal diagnosis.

Good luck OP.

OP go to your GP and ask to be referred. It will still take a long time, but will get it started quicker than 2 months. Write everything down, get school to write anote saying they have concerns.

Hi OP, we have spent 4 grand so far. About half of that was on the ADOS (autism assessment) and the ADHD assessment. These were both private and we waited about 4 months, but we said we'd take a last minute cancellation. The rest of the money was on various therapies. We have had zero help from the NHS. GP helpful but nowhere to refer to/ridiculous waits.

I don't think you should waste your time with CAMHS. It's a lottery and a lot of people seem to have negative experiences.

An OT or Ed Psych may be able to help with practical strategies. We haven't used as DC tolerates school well but was wild at home (better now).

My advice is take control; get informed. Apply for the ECHNA yourself ASAP. Being in year 5/year 6 may help a little at tribunal stage as they are supposed to prioritise DC moving to a new phase of education. Assume Head not fully cognisant with SEN law. Many not.

Find a Facebook group/in person group for ASD parents and start looking into reputation of all feasible local secondaries for SEN. Google 'Local authority name + local offer'.

Good luck.

Look at the IPSEA website. Sure you can apply for an assessment yourself. They have model letter templates on IPSEA. Also look at the SEN boards on MN.

It's nonsense made up by CAMHS, who demand this, even though any reasonable person understands that ADHD or ASD aren't cured by intervention (and maybe doesn't even require intervention).

It's absolutely atrocious isn't it?! My son went on the waiting list in June 2021 and at the time they said it would be about an eighteen months wait. I've just found out that the wait will be "at least 3 and a half years " .
In what developed country is it acceptable to have to wait that long?
I could cry.
I'm pursuing an expensive private diagnosis (and going into debt) because I don't know if those 3.5 years might just keep getting stretched. My son can't wait that long.

So if schools are putting measures in place based on need what's the benefit of getting the formal diagnosis? I presumed people pursued this in order to get the extra support/adaptations at school but is that not the case??

@SleepyRich children with adhd often benefit from medication and neither the school or the gp can prescribe the medications IF i understand correctly. my grandson is just starting down this path and believe me a wobble cushion doesn't cut the fact he refuses to use a pencil and wants to spend the school day in the playground.

Ahh of course didn't think in terms of medications, was just thinking about things school could provide! Can I blame the hour?

"Having to wait 6-7 months before a referral seems like agony. Dd will have to go to high school without diagnosis"

Who cares about the diagnose?you should get her tailored help right now . You dont need a diagnose for that

She is already in year 6.
Get her help. Diagnose has to wait regardless as the system is shit! But you don't have to wait . Andyou shouldnt wait to get her help now op.

Especially as highschool is gonna be so much worse for her if she is already showing signs of struggle now . Find a psychologist that deals with kids with (suspected) asd. So she can start learning about how to handle life.

Good luck op the system sucks

There is some good info on this thread...

https://www.mumsnet.com/talk/am_i_being_unreasonable/4780175-to-ask-about-the-ehcp-thresholds?reply=125252491

Which may be helpful to you.

Pretty helpful for the child themselves - they will still be neurodivergent themselves as adults and can then learn about their brain and how that affects their strengths, weaknesses and mental health.

There is a lot of support that CAN’T be accessed. For example, the local authority ASD teams don’t support children who aren’t diagnosed as having ASD.

ADHD medications aren’t prescribed to children who don’t have a diagnosis of ADHD.

At university level, disabled students allowance needs a diagnosis.

In the workplace, the equality act protects disabled people who have a diagnosed disability.

It can’t be that hard to figure out that these are lifelong conditions?

Yes it's correct. If your in Surrey be prepaired to wait two years for triage then to be dismissed. If you have any means to, go private

Go private if you possibly can.

It's a disgrace that the school say they will decide if she needs referring - let's be realistic they are not experts and there are 32 kids in a class - and children MASK in school.

If we had relied on a referral from school my daughter would not have got the help she needs - definitely not as young as she did. her autism (diagnosed privately) is now clear to the school but it was not until she began to really struggle at about 8/ 9 - it wasn't so clear to them before.

My daughter is jekyll and hyde as I tell the school all the time - she is quiet as a mouse at school comes home throws chairs at me, threatens us with knives, the school are open mouthed when I talk about this.

YANBU but it doesn't surprise me. My son is on a waiting list for two years! however he's in year one and the school are brilliant so I'm not in a position where I'm stressing about it, as he's likely to get a diagnosis before secondary school and in the meantime he's being supported anyway by his primary school.

There's no mention of CAHMS for us though, the senco referred him to a 'developmental paediatrician'

You don’t need to go private. You can use an NHS right to choose provider and your wait will be around 6 months max. You need to find a provider, ask your GP to refer, and be prepared to travel out of county or have an online assessment if appropriate.

We went private as even self-harm and detailed suicidal thoughts didn't push DD up the CAHMS list.

We waited 3 months for a pre-assessment consultation appointment and were only offered one fast as DD is in Y11 and these ages got preference when there was a cancellation. Normally it would have been around 6 months. Assessment itself is most likely around September but that's because of GCSEs.

But, DD's school made reasonsable adjustments, allowing fidget toys, breaks with being allowed on her phone if she spends it in Student Support and separate seating in exams. My friend's school even went further for her DD despite the autism diagnosis still outstanding.
I would push the school for adjustments.