To think it is disgusting that some CAMHS services discriminate against Autistic Children

[taratill]

My son who is 12 has ASD and anxiety and depressive disorder that is treated with Sertraline which was prescribed by camhs.

He is unfit to attend any formal schooling at the moment as there is no school that can meet his needs so he has to be 'educated other than at school'.

Today I have received a letter stating, 'CAMHS does not provide ongoing specialist psychological support for children diagnosed with an Autistic Spectrum Disorder'.

In our area the only 'mental health provision' for autistic children is an outreach service but the child has to be in mainstream school.

Therefore my son has been referred back to GP care with zero chance of ever returning to a formal education setting without specialist mental health care.

I've written to MP again and local commissioning group but I just really want a rant.

This is discrimination , no? Being Autistic is a protected characteristic, am I wrong?

In my area it's the same for adult mental health services, too.

I hear you OP - you sound like you are in a similar position to me and it’s terrifying...

DollyPartonsBeard so is treatment specifically denied to autistic adults? on what basis?

Unicornfeathers this potentially affects 2 children of mine as my daughter is also autistic. It's shocking.

They tried it on with me and my ds doesn't even have a diagnosis.
'We can't help him because we think he's autistic.'
'Well, the psychologists who did the autism assessment don't think so.'
'No, but we do.'
In the end school rang up and had a go at them and eventually they enrolled him onto a group course on Managing Fizzy Emotions which turned out to be really helpful.
Fwiw I think ds probably is autistic - he was on the negative side of borderline in the assessment - but wtf.
I am seething for you, op.

Yes it is outright discrimination. It needs to be challenged.

Also against NICE guidelines

Helpful blog post about this sort of thing here

I'm disappointed this is still going on, I remember 10 years ago our social services department didn't offer support to autistic DC through the disability team or through the mainstream support. I used to tell parents to complain as they were excluded from getting a service anywhere. I had hoped things might have moved on.

My 7 year old is currently only in half time schooling (even though he can’t read or write yet and has SALT problems) for essentially the same reason. 😡. We’ve been waiting on “enhanced nurture provision” at another school for most of the school time, it’s been months and I’ve finally got a letter that says he has a place, that starts in August.

He’s been repeatedly discharged from CAMHS as “we believe he still has the same problems as he had previously which is likely ASD.

That's shocking. I am thankful on a daily basis that where we live camhs do treat children with ASD. Ds has had several years of counselling and latterly antidepressants. He sees a psychiatrist on a reasonably regular basis (shortages aside).

The only issue has been a constant redeployment of staff which has meant that his key worker has changed multiple times and we have so far never seen the same doctor more than once.

But I can put up with that in the knowledge he is getting help.

Mind you they wouldn't see him in the two years he was on the waiting list for an ASD assessment and he was really very ill then. It took him trying to kill himself at age 11 for them to step up, but since then his care has been continuous and in many respects very helpful.

I second writing to your mp and complaining to pals. Perhaps ask your GP if there is any way the commissioning group can pay for him to be seen privately, paid for by the NHS. Make it clear you will hold them responsible if anything happens to him because he was denied treatment. I had to take DS to A and E and I think the doctor phoned camhs and asked them what the hell they were playing at, because we had an appointment within 4 days.

its a disgrace. we were told at the start of the diagnosis process that if camhs diagnose him as autistic they will provide no mental health support as they 'are not commissioned to provide that service'

something like 40% of autistic children get anxiety and they don't get any access to the support that non-autistic children get (which is probably not much, but even so) the idea is that if you 'change the environment' then they wont be anxious but its total rubbish as you can't change the whole world so they need to have some help in managing the anxiety. CBT has been show to be effective for autistic children with anxiety. They just don't seem to be allowed to have it.

This happens here too, as they believe that ASD is an ongoing ‘condition’ and not a mental health need. Anxiety and depression are only treated at CAMHS if they believe it has reached a clinical threshold, over and above what is to be expected as ‘part of their ASD’ 😡

I don’t know about children provision, but where I live there is a specialist psychological service for adults with ASD or Learning Disability. That may just be my area.

PaquitaVariation surely it has reached the threshold if it is treated with anxiety medication. How on earth is it reasonable that a GP is expected to manage anxiety medication in a 12 year old!

It's sickening.

I have a headache as I am currently in the situation where I feel as though I may be also forced to offroll my daughter as mainstream primary is too much and local SEN schools, can't at the admittance of the LA cater to her academic potential. I had a meeting today at which I had to point out that no parent WANTS their child not to cope in mainstream school.

My daughter had the first two referrals to CAMHS refused as not meeting criteria she has autism but the real problem is anxiety, The third referral was successful and she was allocated a CAMHS worker eight months after first referral having been out of school for six months by then.
I said at first meeting dd needs medication to lower her anxiety in order to be able to engage and she needs autism specific therapy. CAMHS allocated her a worker with no understanding of autism and stated she would need to fail before they would consider any referral for medication.
When CAMHS discovered I had received compensation from the LA for failing to meet their duty the attitude changed (most likely because LA let them know they were next on my list and they still are anyway) and dd is to see the consultant on Thursday to discuss medication and next Friday she will meet the Autism specific therapist but it is now eighteen months since first referral and dd has been out of school for 14 months and we have had ten months of input that was useless and was never ever going to work.
It's all very well stating funding being the cause of limited services but what has been the point of dd's ten months of home visits by somebody who didn't possess the knowledge and skills to help?

@fleshmarketclose and therein lies the real problem. My son needs an autism specialist mental healthworker and they are like gold dust.

My son has been under camhs care for over 2 years and they still are wondering why he struggles to engage especially if there is a change in the environment. They do not even appear to understand that an autistic child can experience a sensory overload which renders them non- verbal. Because the child can talk this must be a 'behavioural problem'.

Camhs here had a specific autism service - dd received her meds and had monthly counselling. She also received help from the outreach team at school. I think you first need to sort out school because they are the ones who can put a care plan in place.

It's difficult. I suppose the complexity is unravelling what part of the anxiety and depression is being caused by unmet needs, and what is 'organic' anxiety and depression.

I suspect that CAMHS would say that much of treating anxiety and depression lies in identifying the root cause and dealing with that. With ASD dx, they've already done that, and the need lies in managing the environment, the management and the approaches to make his education work for him. By doing that, his anxiety and depression may start to lift, which will help him further access education, life, etc..... It's a bit chicken and egg.

There's no point spending hours on psychological input if you fundamentally don't have the right environment for him to succeed in when he walks out the door. E.g. take an adult who has claustrophobia. You spend 2 hours in therapy, talking about calming strategies they can use when they find themselves unexpectedly in tight spaces with no escape route, etc. They feel empowered. They leave the session, then they go to work and they are expected to work in a cubicle in the corner of a room, furthest away from the door, down a long, narrow corridor, with no natural light.... Setting them up to fail from the outset.

I think it needs to be explained better, and I think that it needs to be joined up better, so that rather than "we don't do this" it should be "we find that when people have ASD it is better to do this...". All we want is care for our children. To know they matter. They need to get better at showing they do.

anniehm he's not in school that can't be sorted anytime soon due to a significant school phobia.

lougle I see your point but we have amended the environment, he's no longer in school. Unless he is to be a complete hermit he does need clinical support for his anxiety.

tara I've gone to Tribunal to get dd into an independent specialist school with their own psychotherapist, psychologist and counsellors and complimentary therapists as well as SALT and OT on site. Hopefully once I have a place there I can get rid of CAMHS altogether as I did the same for my son. Ds was transformed by being in a school that met all his needs and provided a holistic approach throughout. Our independent ed psych wrote that weekly therapy will not be enough to address dd's anxiety she needs specialist support in an environment able to meet her needs. I have no faith in CAMHS being able to help considering the shambles I experienced first with ds and now with dd.

fleshmarket where I am there is no specialist provision locally therefore the only option would be residential. I don't think I could cope with that.

Tara that's rubbish but having said that I know, after seeing ds's transformation, that if the only option for me was residential then I'd go for it however much it would go against what I wanted. Ds was mute on entry to independent specialist as his anxiety was so high he wasn't functioning. He led his final Annual Review in front of a room of professionals whilst his teacher, principal and I tried to hide our tears.

It may be down to a shortage of specialists too.
If they don’t have people trained to treat people with autism and depression then it may not be discrimination, just lack of resources.

My local authority don't recognise autism unless it's the severe, non self caring type and they're forced to provide physical care for the people affected.

Ds1 has PDA autism, ds2 and me have aspergers type. Ds2 can't attend school due to bullying so attends an internet school. We pay for him to see a private psychiatrist who prescribes an anti anxiety medication. I tried for 15 years to get help for ds1, but failed, and he ended up with a severe, life affecting phobia. Thankfully, it's being treated now he's an adult, but the psychiatrist was so angry when he found out how we'd been treated.

Camhs treated us very badly over the years and I ended up making a complaint. They are nasty and treacherous people. Autistic parents are particularly badly placed to access help as we can't always tell when we're being lied to and deceived.

Autistic people are being very badly let down. I receive no help or support either, I just rely on medication and I can't access healthcare for physical problems either due to the trauma of dealing with camhs. I basically can't deal with healthcare professionals at all now so just end up sick. Need care for gallbladder, but can't work out what to say to them in order to trigger a response as they just look at you when you try to talk to them. I don't speak neurotypical, so am screwed really.

My son is severely autistic and when he was 16 he was referred to Camhs by our GP. They treated him and prescribed medication for aggression.