Zero support available for Autism

[SmokeyBlue]

I don’t normally post in AIBU but it gets a lot of traffic and I’m desperate for any suggestions. I’m not being unreasonable I don’t think to want support/help available for my autistic child. There must be someone somewhere who can help.

DS17 is autistic, he spends all day everyday alone, often only venturing out his bedroom in the dead of night when the rest of the house is sleeping. Won’t leave the house, has very few interests, barely eats anything (very underweight).

He missed most of Y10 and Y11 despite being at a supposedly outstanding specialist school. No one has ever managed to get him to engage in education - he left with no qualifications. Got a place at an education centre that works with children with SEMH needs 1:4, went twice in September hasn’t been back since. No one at the education centre appears to have any interest in trying to engage with him. He has an EHCP - I’ve requested an early review.

Had some support from CAMHS and Eating Disorders team last year but it seems that is now being withdrawn due lack of engagement. His behaviour is thought to be driven by his autism and therefore no role for CAMHS as not a MH concern.

Spoke to a local charity who felt his needs were too ‘complex’ for them to be able to offer any support.

Where do I go from here? Just leave him to it and hope at some point in the future he’ll decided he wants more out of life than sitting alone in his room?

Sounds like he needs psychological support of some kind. I would also say social care support because if he continues to live like this he will need help setting up home for himself. I would be pushing for support for someone to work with him 1.1 initially at home. Does he engage with you at all or with someone else in the family?

Since DS has an EHCP, support, including therapies and PfA provision, can be provided via that.

It sounds like DS needs an EOTASC/EOTISC package tailored around his interests and self led. You say DS has few interests, what are the interests he does have?

Would DS trial medication?

T'was ever thus. My son (now 36) never had any support at all. Went to grammar school, then uni and loves learning so education was never an issue, but the rest of life and 'life skills' totally lacking, with no support from outside family.
It is very difficult.

This is horribly familiar. DD18 was left without a physical school place at all for 16 m (yes that is illegal) and only got a PT place because I'm a middle class mum who hounded everyone concerned until she had something. Even so it destroyed her chances of decent GCSEs and A levels. She has now been 'between' supported internships for over 3 m (WTF???). CAMHS dropped her completely as soon as they had diagnosed her because 'autism isn't a medical condition' (?? the reason we came for a diagnosis was because she was struggling).

SEN provision is an absolute nightmare/non-existent and it's the kids who suffer as a result.

I really feel for you op, I'm afraid I have no suggestions as I have failed to get any support for my daughter who is autistic, has tourettes and poor mental health. I am home educating her - not through choice and cahms won't help for reasons similar to the ones you cite.

Unfortunately if someone won't attend whether that's an educational setting or medical appointments we are very limited. Psychiatric services do have home visits but they may not assess him as reaching the threshold for a home visit, and he'd still need to talk to them. It's very hard when someone clearly needs support and declines it but unless they lack mental capacity (in the legal sense) they have the right to refuse.

In the same boat with my autistic 14 year old daughter. Schools and LA don't care and offer no support. Out of school over a year and now officially home Ed. She lives in her room and I'm her only socialisation. I've had to give up work, it's broken me and isolated me. But everyday I have to put on a brave face for her.
Sending hugs and sympathy OP, the system is totally broken and our children are suffering. I don't know what the answer is but you are not alone xx

This is such a worry for us.
My DS is primary age but I do worry for later years. Currently in an ace sen school.
There’s a charity here called bridge which offers support, social sessions and helps with job skills, so hopefully that will still be about when he’s a young adult.

My son is the same (18), struggling to engage with anything. Spends all day in his room. I can count on my fingers the number of times he has been outside in the last 2 years
Camhs say they can't help as he is mute & they only offer talking based therapies

Is the eating sensory/ related to autism or low mood?
If it’s ARFID I can recommend this book.

https://www.amazon.co.uk/Autistic-Teens-Avoidant-Eating-Workbook/dp/1787758591?ie=UTF8&tag=hydrukspg-21&hvadid=719417711942&hvpos=&hvexid=&hvnetw=g&hvrand=8478036312299458293&hvpone=&hvptwo=&hvqmt=&hvdev=m&ref=pd_sl_3f0tmelaon_e&gad_source=1

You have all my sympathy OP. Similar here too, DD16 has ASD, OCD, depression and anxiety, no support available - diagnosed and discharged from the autism service, CAMHS put all her mental health problems down to autism and that's not their responsibility. She's been out of school since 2021, no help from the EA, we tried a small independent which didn't work out, now homeschooling because there is no other option. If we're really lucky she'll get 1 GCSE this year.

No solutions unfortunately, but Parenting Mental Health is a great Facebook group for support.

Hi OP,

I would recommend looking at the local offer website for your area if there is one.

I think a lot depends on where you live and what is commissioned but generally there are alternative service for young people provided- for instance a child in my area would be discharged from the generic CAMHS team but we have a completely different CAMHS service (totally unrelated to the first I mentioned- I have no idea who works in that service or where) for children with additional learning needs and /or neurodiversity. This isn’t a small service, there are lots of us in the team and your child is the exact sort of referral we would accept and work with. I have worked in the equivalent of this team in three different cities so I know it isn’t just by chance where I work. We also work closely with social care who also have a separate team for young people on the spectrum/with additional learning needs and struggling with school. Your child must have an EHCP to have the level of provision offered in the first place, and the local authority should be able to invite further support from educational psychology to help with thinking about getting him in to school. It is a bit of an issue if he does not want the support, but before he turns 18 really we would be working with a whole network including social care/psychology/school rather than simply offering him a bit of therapy, which is unlikely to work until he feels safer.

I feel for you. I have two autistic DC who also suffer from anxiety. The prevalent CAMHS view that they can't help autistic children is diabolical.

Would he engage with any phone or online appointments? Is medication an option?

It could be burnout and with time a d low demands things might improve. You've done the right thing to ask for an emergency review of his EHCP.

It’s just impossible to know what to do, we all have the same stories and it’s heart breaking. The thing that keeps me going is that at least our little people have us battling for them because the system that we have all paid into and all trusted would be there is letting us all down daily. At least we’re in this in good company

Provision at home can be provided via the EHCP even if DS doesn’t meet the normal threshold for home support via CAMHS or following transition adult mental health services.

Similarly, an EHCP can fund provision that relies less on verbal communication such as animal assisted therapy or Mindjam. Lots find this is a way in.

Although many have to appeal to SENDIST. Some then have to enforce the provision via JR.

I am so flabbergasted by CAMHS. They immediately signed my daughter off once she got her autism diagnosis. If they’re not there to support neurodiverse children, who are they there to support? Our Local authority doesn’t have any autism support so we have been alone. And this business about not engaging - the reason our children need support is precisely because they’re not engaging.

It’s really hard.

My 18 year old DD also has ASD, missed the last 2 years of high school, managed a year at college, and is now looking for an apprenticeship.

Most of her friendships are online, and thats fine. She loves gaming, and again .. fine.

we went through a stage if her not really talking to us - it was like living with a ghost. We got get some private therapy, that she still has, which has been great, and she’s also now on Sertraline.

There is very little support out there, people don’t believe you when you tell them. What I’ve tried to do is become her great friend, so we go out and do stuff together (because I want to get her out), and I help her with whatever the latest problem is.

What I tried to do was to “step into her world” a bit more , so I know loads about topics that don’t really interest me, but it gives us a basis to talk.

She’s now learning to drive (thank you PiP), and I pay for her to go to the gym. I try to get her to do little things to improve independence.

I find lots of helpful information on the Internet .. as there aren’t really any services.

Our area has a cahms section which sounds similar but it’s virtually impossible to get referred to it if child does not also have a severe cognitive impairment and it doesn’t sound like op son does. I’m having a nightmare with my son at the minute as he’s becoming very dysregulated and also struggling with sleep, we’ve had to have the police out twice in last month and also ended up in a and e one night. We saw Cahms crisis team after an and e visit and they referred back to gp as it’s not mental health but gp can’t do anything so has referred back to Cahms but that’s a 2 or 3 year wait. A and e, police, school and myself have all out in safeguarding referrals to social care but haven’t heard a thing not even a call or email although based on past experience I wasn’t exactly expecting much. The only option I have is to call the police out each time things get dangerous levels

CAMHS and the NHS also of no use here so we had to get private help (with the whole bundle of autism, ADHD, PANS PANDAS, Long Covid, anxiety, hypermobility, POTS, OCD, ARFID, PDA you name it no support whatsoever)

It’s almost as if you end up with less support (if that’s possible) if they are autistic as everything is then “becuase they are autistic”

I would suggest getting a video appointment with Stepping Stones clinic if you can

Also for a mentor an organisation such as Game Changers

Link for Game Changers
https://www.changers.org.uk/

My son has an a psychiatrist through calms who gave him setraline and melatonin which has been very helpful.

I dont know if anxiety meds are something you can access at all

There is very little support out there. We've been lucky with OT and equine therapy.

It just seems so variable what people can access. We just happen to live near a charity that did equine therapy but it's not universal access.

Does he spend a lot of time of screens in his room?

Have CAMHS already discharged him? If not I would contact them and push for him to be reviewed by a Psychiatrist. He may be simply too low in mood to engage in any meaningful way with therapy but they could trial antidepressant medication and see if that helps with his level of motivation. Do you think he would be willing to try? It is difficult because unless he meets the criteria for to be detained under the Mental Health Act as an inpatient (and it sounds like he wouldn't) CAMHS cannot work with young people who don't want to work with them.
It is grossly unfair that Autistic people are supposed to accept feeling depressed and anxious as an inevitable part of their neurodiversity when these are legitimate Mental Health problems with medical and therapeutic solutions. Even if the depression, anxiety and eating difficulties are driven by Autism that doesn't mean that they're not debilitating, or that they can't potentially be treated.