Autistic child - losing hope

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I have two primary aged DC with very (very) complex needs. I am so frightened for my eldest. He is autistic, ADHD, severe speech delay and just chronically unhappy.

We have done everything we consider ethical (so no ABA for us). No school place, 2 failed special schools and nowhere else can meet need. I know everyone is going to say residential but I used to work in this area and I know the risks. I don't think we could do it.

He screams and self injures all day long. The tiniest demand sends him into a complete rage. No CAMHS will see him because we don't have a specialist Learning Disability CAMHS (yes, I know this is illegal and I keep complaining). Nothing we do makes him happy. The LA pay for activities of interest for him but because he can't control the timetable, because, you know these things need to be booked in advance, he badly injures himself and refuses to participate.

AIBU to ask if there's any way back from this? Should I just withdraw him from activities and let him sit in his pyjamas on the ipad (which also makes him a bit unhappy but significantly less unhappy then anything else)? I mean, he's learning nothing by screaming in different venues.

That sounds so difficult, I'm sorry you're having to try and navigate this.

Have you had a look at PDA and ODD profiles? I wonder if there might be some support/advice available through somewhere like the PDA Society?

Why are you against residential?

Residential places are hard to come by but your child is only going to get bigger and stronger while you age.

You seriously need to consider this as an option for both you and your child.

Because of the child abuse that can occur in them

My child is less complex/severe but he got into a permanent state of fight/flight, totally disregulated all the time. he basically had to have a period of time with no demands or activities placed on him at all, then gradually build up from a better place after that point. It has been long and slow but he is able to do so much now. 5 years later! But it had to start with him sat in his pants, doing very little for months. I worried that it would be forever, but it wasnt.
Not saying it would be the same as everyone has different needs. But i do think nervous systems need time to recalibrate. Just one meltdown takes 48 hours recovery. Imagine if dvery day you have several. Thats a lot of 48 hours stacked up.

That sounds really tough and I'm frothing at the mouth about the lack of ID-CAMHS (I know we have them - they're in the next office to me)!

If it's demand-avoidance it's hugely hugely driven by anxiety. They try to manage that anxiety by basically nope-ing out of any kind of demand and it can be that even asking if you want pizza or chips for tea is too much of a demand for them to cope with at their most anxious. Generally we would recommend (I work in adult ID services) reducing demands as much as possible, work on the anxiety first and then reintroduce demands - but often in the same kind of way you would with a reluctant toddler - so not "get your shoes on" but "do you want your shoes or wellies" type "choices".

I know it's contrary to what I've just said but I wouldn't withdraw from activities - mainly because (and it's experience speaking here) the LA then are very likely to turn around and pull the funding and it'll be a bugger to get it back (the concept of "not a good idea AT THIS PRECISE POINT IN TIME" doesn't seem to get through).

I'd be considering getting the MP and anyone involved about you being stonewalled by services - I know there's a petition around at the moment about just this issue with CAMHS dodging out of any referrals for Autistic young people and it's absolute bullshit that some of them are still trying to get away with this nonsense. Also start throwing in phrases such as "carer stress" and "risk of placement breakdown" - sometimes playing buzzword bingo is enough to get you listened to more.

It's possible that there's some frustration there about not being able to communicate because of his speech delay as well - would it be worth asking if AAC is an option - or is he just going to assume it's another iPad to play on and not use it for intended purposes?

A couple of suggestions-

• can you speak to a solicitor specialising in this area and get some advice- both in terms of schooling and CAHMS help. A letter before action may be the quickest way to get them to take it seriously- if the LA don’t have the right services then they need to pay for them privately;
• in the meantime can you pay for some private therapies? Or a specialist tutor who comes at the same time each week;
• is he medicated? If so has he been reviewed? If not has he been referred or at least seen the GP recently (you may qualify for a home visit);
• in terms of the school, have you identified somewhere which might meet his needs yourself, or do you think realistically it’s simply impossible? If you identify somewhere yourself then it can make it easier as you know what you’re aiming for.
• reach out for any help available either via your GP, social services, charities etc.

In the meantime yes, I would allow as much screen time as you need (within reason, I.e not all night), staying in pjs, very low demand etc as until he’s in a better place mentally as anything you do won’t work. Obviously still offer alternatives like activities, walks, healthy food etc but don’t get into a row/ put pressure on as that will not help things. And completely ignore parents of neuro typical kids who give crap advice with a side order of judgment!