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Had some support from CAMHS and Eating Disorders team last year but it seems that is now being withdrawn due lack of engagement.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?

He is prescribed medication but refuses to take it - melatonin, antidepressants, promethazine for anxiety, and vitamins for nutritional deficiencies. He won’t take any of them.

His eating difficulties appear to be more related to body image than ARFID. There’s been talk a few times over the past year of hospital but nothing comes of it. They wanted to add him to a DSR and hold a CETR but as he is over 16 his consent was required and he refused.

He’s not been discharged from CAMHS but they are ‘taking a step back’ and talking about not being able to support him as his difficulties are autism driven.

It’s confusing for me as from my point of view nothing has changed from 3 months ago when hospital was being considered option. So I’m not sure why now it’s ’there’s no role for CAMHS’.

He’s not had any observations done from the eating disorders team since before Christmas despite him being only 75% wfh.

Because he no longer takes the melatonin his sleep isn’t good and he is often awake for 24hrs or more at a time. He currently has a couple of 2 hour naps in a 24hr period.

School has been difficult right from the start - refusal to engage, even in reception. He went to three different primary schools and eventually we got the EHCP in Y7 after I was asked not to send him back to his mainstream secondary. He’s never been disruptive as such - he just shuts down in every class, closes his eyes and becomes uncommunicative. He also missed most of Y7 and Y8

I’ve no idea how to help him. Presumably I need a really good EHCP with various therapies?

It sounds so hard. He really seems to have closed himself off. Do you know why he won't take any medication? You say he has very few interests, but does he have some? Are there any threads you can very gently pull at to gradually draw him out a bit? Does he open up to you at all? After a period of many daily meltdowns my daughter spent 6 months lying in her room in the dark doing nothing but listening to the same few songs over and over very quietly. She has been gradually emerging and it it it so difficult to know how much to push her. She self harms, it sounds like your son is self harming with his refusal of food and medicine. I keep trying to boost my daughter's confidence and encouraging her to do things however small or slight. I'm not sure what else to do.

It does sound very hard. I just wanted to add a bit of sympathy really.

You say he has very few interests, are there any you can latch on to at all?

So sadly familiar.

I guess the crux of the issue is you can’t cure autism. And it’s why I do find it upsetting when a parent is worried about their child having autism and you get so many ‘oh well so what, they are still your child …’ yes quite.

Yes, you need a good EHCP. Not just therapies, but an EHCP with provision based on DS’s interests.

Tameside here.
Have been waiting for an ADOS/Disco for five years.
Year 2 Watch and Wait
Year 3 referred then rejected due to COVID Backlog
Year 5 seen OT then Ed Psych
Year 6 referred after doing the plan reviews Rejected then referred. Finally told on list last August.
CAMHS rang me at the weekend "Do I still want DC on the list?!"
You couldn't make it up.
They are in year 7 now.
Was given Our Kids Eyes info on Saturday.
Just looked up now - two support groups, neither for ASC and no events in February. Unless I'm missing something.
There isn't any practical support other than the community swimming I found myself.
The government need to wake up, honestly.

I feel for you. Similar here with older adult son. Very hard. I care for him now he never goes out.

His interests revolve mostly around watching Godzilla Movies (there’s 38 of them!), looking at his Godzilla figures, and playing PS5. He prefers single player games to collaborative or online. He also likes listening to music.

I try to get involved in his interests and have at least one chat daily about them - today we’ve had a 5 minute chat about Baldur’s Gate but that’s probably the most he will speak to me today.

He’s most animated with his younger brother, they will chat about League of Legends/Arcane and play Wild Rift together.

Have a look at Mindjam. They don’t always have to play collaboratively.

Applied behaviour analysis / positive behaviour support. Not the people who have been on a 3 day course but those who have a degree / post grad and years of experience.

Mixed view and various comments about aba which suggests it doesn't work for individuals more affected by autism than those mildly affected

It's crazy that support for autistic people isn't offered as a purely online therapy. Asking certain autistic people to engage face to face, or over the phone, is like asking someone in a wheelchair to climb a flight of stairs to get the help they need.
Surely a completely different approach is needed, not just, oh well, they won't engage so we can't help.

I am very happy for you (or anyone) to DM me as we're in a very similar situation here. DS17 ASD EHCP social anxiety EBSA since year 7. He has a place in sixth form but is currently only attending a couple of hours a week under sufferance. He games but not with other people, doesn't use social media, and doesn't have a single friend. It breaks my heart as he's a sweet kind funny clever lad.
It feels like we've tried everything and it's so hard not to lose hope for his future.

It's so hard.

I feel for you 💔

I remember there was a kid at my son’s school who was really into Godzilla now wondering if it’s the same one or maybe there’s more than one autistic kid into Godzilla. Did he start at the school when it was new? If it is the same local authority as me then they are awful, I don’t think Ds will end up attending anywhere after year 11

Is the PS5 in his bedroom? That might be hindering his sleep routine.

No, he didn’t start at the school when it was new - I expect there are quite a few people into Godzilla!

No, the PS5 is kept downstairs - it’s shared with siblings. Part of the issue with his sleep routine is him having a preference for night as the world is much quieter. Then he refuses his melatonin which also doesn’t help.

Sorry to hear there are so many others in a similar position. Mindjam looks really good, the website says you can get funding for it from the local council. Is this the sort of thing I need to request gets added to his to his EHCP?

What would you like to happen? What would he like to engage with (if anything)? And most of all, is he considered to have capacity?

As he's now past school age, they won't be able to force him to engage if he has capacity, but if you want specific support eg a care worker to take him somewhere you might be able to get support with that. Autism is tricky when getting support because it has a wide spectrum and isn't necessarily a disability, my dd gets angry when people describe her as being disabled even.

Yes, Mindjam can be funded via the EHCP.

Anyone can choose to see themselves as disabled or not and describe themselves as disabled or not. But autism meets the legal definition of a disability as per the Equality Act.

Currently, in order to get a diagnosis, the impairments must be clinically significant (DSM-5) or result in significant impairment in personal, family, social, educational, occupational or other important areas of functioning (ICD-11).

The Equality Act "defines a disabled person as a person with a disability. A person has a disability for the purposes of the Act if he or she has a physical or mental impairment and the impairment has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities” (S6(1)).

Any impairment that is clinically significant or results in a significant in personal, family, social, educational, occupational or other important areas of functioning has an impairment that has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities.

Besides, EHCPs and things like social care support are based on needs, not diagnosis.