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AIBU?

To think that ASD children are being discriminated against in access to mental health care

38 replies

taratill · 10/10/2018 15:46

I've just come out of an appointment with CAMHS at which I was told that because my son's anxiety and depression is due to the fact that he is on the spectrum CAMHS does not have the remit to cover his care.

My son has, at times, been suicidal and is currently on medication to treat anxiety and depression (a comorbid condition to the ASD).

AIBU to think that parents of autistic children are being left hung out to dry if the mental health service for children is refusing to treat them on this basis? This is the second service (other being NHS OT)refusing to treat my child on the basis that his difficulties are due to being on the autistic spectrum. We are having to pay private.

The consultant who told me this is calling me back to continue our conversation either tomorrow or Friday as my child could not cope in the meeting room and I feel like challenging this decision (basically that they will not be responsible for his care).

Surely it is simply discriminatory to treat NT's for anxiety and depression but not autistic people on the basis that they have autism (a disability).

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anappleadaykeeps · 10/10/2018 15:52

You were very lucky to even get to see someone at CAMHS for an appointment. But that probably isn't much consolation I know.

Politically, there is a lot of attention on mental health issues. I would try raising it via your MP - he may be able to raise it as an MP's question in the HoC, or just writing to CAMHS on your behalf.

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Curious2468 · 10/10/2018 15:53

Yanbu at all. I’ve been going round in circles for over a year trying to access palms for my son :( the system is a joke tbh

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OneInEight · 10/10/2018 15:54

Totally, totally, totally agree.

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anappleadaykeeps · 10/10/2018 15:54

Who is supposed to cover mental health issues for an autistic child? Your local Health Commissioning body may be the place to start (and then the MP, once you have got nowhere on your own).

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grasspigeons · 10/10/2018 15:55

Yes I think it's terrible. They still need mental health support. It's still anxiety. They still have the skills to support it. It's not as if they is other specific ailutism support out there. Or none I've found. Big hugs and I hope you find someone to help your son soon.

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taratill · 10/10/2018 15:55

I don't consider myself lucky to have got an appointment. My son actually tried to kill himself several times before he did (I know what you mean though).

Yes I'll head back to the MP again. She knows me well.

I'm just so sick of fighting....

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taratill · 10/10/2018 15:57

I am going to ask who is supposed to cover care but I suspect I'll get the same answer that I got about the sensory difficulties and OT that they are not commissioned to cover it.

I will contact the health commissioning body anappleaday , great idea, thanks.

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anappleadaykeeps · 10/10/2018 15:59

We've been through v similar - DS has Aspergers and Anxiety. The difference to him once CAMHS finally saw him and put him on Antidepressants for the Anxiety was amazing .... but it had taken 4 years of being turned away from their doors repeatedly, and him dropping out of mainstream school before they did take him on.

Separately our MP at the time was fantastic when we couldn't get a Specialist School agreed with the LA.

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Sleepyblueocean · 10/10/2018 16:00

Around here people have had problems getting SALT, physio and OT for children with Asd because there is no one trained to work with children with asd. Camhs will work with some children with asd but not with anyone who also has a learning disability.

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taratill · 10/10/2018 16:02

my son is not in school and is on anti -depressants. The attitude appears to be that if the environment is right then he won't have mental health issues therefore they don't need to be involved.

Onus therefore 100% on parents to provide a non anxiety inducing environment rather than helping come up with strategies to reduce the anxiety.

Guess kicking all the autistics off the list is one way of shortening waiting lists. Bloody disgraceful.

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anappleadaykeeps · 10/10/2018 16:04

Who prescribed his anti depressants, or are those from a private consultant?

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anappleadaykeeps · 10/10/2018 16:06

And how old is he? Does he also have an EHCP? Even if he is out of school, is he on a school roll somewhere? (DS was still on his old primary school 'roll' but long term absent, doing 'Online Learning' 2x per day instead.)

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APMom · 10/10/2018 16:06

I just got a letter from CAMHS today refusing to see my son with asd too. I’m in Ireland so it seems to be standard to refuse our children support.

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taratill · 10/10/2018 16:06

CAMHS prescribed them and diagnosed anxiety and depressive disorder and ASD, but apparently he can still have them even if he is not under their care, I'm not quite sure how that will work.

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taratill · 10/10/2018 16:08

anapple the education part is another whole issue. He has EHCP and is educated otherwise at the moment with a personal budget.

LEA are trying to force him back into an unsuitable mainstream environment.

I need camhs to assess the impact of this on his mental health.

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taratill · 10/10/2018 16:08

APMom it is shocking.

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wizzywig · 10/10/2018 16:09

I work in a tier 1 mental health service for kids. Every anxiety, wellbeing etc workshop that is run is generally frequented by kids with asd and/or adhd when they arent specifically for those 2 conditions. I have no idea what its like going into tier 2/3/4

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MrsPhillippe · 10/10/2018 16:10

Feel for you OP. I have 2 DC with ASD, one severe.
Once she was diagnosed at 2yrs 9m old I was pretty much told that 'health had done their part, now it was over to education' Angry

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taratill · 10/10/2018 16:10

He is 12 and also has a learning difficulty, Dyslexia and struggles with auditory processing, short term memory and sequencing but is very bright. Needs a highly individualised education to be able to achieve capabilities. The only local special school that might be suitable will only allow him to do 5 gcse's he has broad interests and is very academic and works hard in the right environment.

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YeTalkShiteHen · 10/10/2018 16:10

YANBU OP. It’s just not right.

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anappleadaykeeps · 10/10/2018 16:17

If CAMHS are prescribing ADs for him (which need tailoring to the right dose, and then monitoring), presumably that makes him Tier 3.

That is good news I think, as it is much harder for CAMHS to drop a Tier 3 patient. I would be very firm that you don't agree to your GP taking over the AD management, especially for someone with comorbid conditions, and as young as 12.

Can you push for local CAMHS to refer him to a specialist Tier 4 Consultant? If near London, the Maudsley Hospital I think has a specialist unit for Complex ASD.

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taratill · 10/10/2018 16:20

anapple how do you find out what tier a patient is and what the tiers are? I'm ashamed to say I have not heard of tiers before.

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taratill · 10/10/2018 16:21

thank you so much by the way !

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Frizzcat · 10/10/2018 16:22

Op you are 100% right. One of my dc is on the sprectrum and I work in support services for autism.
I see families like this every day and it is my own experience, where commissioned services bar children/adults on the spectrum because of their ASD diagnosis. OT rarely offer sensory support that is very much needed for many people on the spectrum. CAHMS are much the same. It’s like our children can’t have anything other than their autism diagnosis even though we know that over 60% of people diagnosed with autism have a diagnosable anxiety disorder by the time they are 14yrs old.
So, we go round the houses, person is anxious, mental health professionals say “well he/she needs sensory support, not our remit as it’s autism and you don’t meet our threshold”. Then OT announce they are not commissioned to deal with the sensory issues causing the sensory overload and anxiety in autism but here’s a fun fact sheet on what you already know.
Don’t even get me started on the non exsistent mental health support for parents once their children have been diagnosed, who are just expected to take it on the chin with no help, understand education law, equality law, what OT even is, multiple appointments, retain all information and then apply it.

I suspect you know the drill scream and bang on every door, complain everywhere.

Go onto the SN boards here and ask the many clued up people where you can apply for grants so that you can look at private therapy. Look at the mental health charities in your area and see if they are offering anything.

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anappleadaykeeps · 10/10/2018 16:31

National.slam.nhs.uk
Look at the CAMHS section on Complex Autism. And the Eligibility tab. I would be pushing for a referral there is local CAMHS were not able to keep providing support, due to it being two conditions not just one.

I'm not sure how to confirm what Tier you are - but I thought generally psychologists were Tier 2 and psychiatrists were a Tier 3.

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