At crisis point

[HopelesslyNaive98]

DS7 (‘high functioning’ ASD/PDA) is dysregulated and miserable. We’ve been in an acute phase for 3 or 4 weeks, but in reality it’s been escalating for months. He spends many of his waking hours screaming, crying, attacking DH, hurting himself (punching himself, banging his head), and threatening suicide. As you can imagine end of term, nativity, Christmas etc. has made things worse.

We practice low demand parenting as much as is physically possible. We’ve read all the literature. We are doing all the ‘right’ things as far as a child with his neurotype goes.

He goes to bed crying and wakes up screaming. My heart is breaking for him.

The CDC who diagnosed him ‘don’t have the resources to manage behaviour’ (despite me expressing how much this is not a behavioural issue but a dysregulation/mental health concern). CAHMS ‘don’t deal with ASD’ and won’t accept a referral. Both services have basically said ‘take him to A&E if you think he’s a risk to himself or others. He’s ALWAYS a risk to himself or others. I don’t know where the line is. He spent a good hour yesterday punching himself in the face. Poor DH has been kicked, punched, spat at…

HOE THE FUCK DO WE ALL LIVE LIKE THIS? We’re all miserable. My heart breaks for DS. We cannot go on like this.

CAHMS ‘don’t deal with ASD’ and won’t accept a referral.

Have you formally complained? Many services say this, but they shouldn’t. They should not have blanket policies like this. It is so common but wrong that Michael Charles, a well regarded SEN solicitor, wrote a piece on this on Facebook. I’m not on Facebook but someone sent me screenshots. You could also request a referral out of area.

Does DS have an EHCP? If so, what support, including therapeutic provision, is included? SALT, OT (including sensory OT) MH therapies? An EHCP can provide provision that wouldn’t usually be offered via the NHS and/or provision in excess of what would usually be available via the NHS.

Does DS take anything to aid sleep?

How is DS’s eating?

Has DS had a home OT assessment?

Have you had social care assessments? A carer’s assessment for you and an assessment via the disabled children’s team for DS.

Some people find non-violent resistance resources helpful. If you haven’t already read The Explosive Child and the Out of Sync Child books, some find them useful.

I haven’t formally complained. I sent a reply and asked what they expected me to do. They said they ‘might consider’ a referral if we had worked with CAPA already so that’s the first thing on my list for the new year.

DS has an EHCP but it doesn’t have any therapeutic recommendations. He has 1-2-1 with an ELSA trained TA who will be delivering a completely bespoke curriculum come Jan and school are offering lots of extra bits and pieces - forest school, Lego therapy, sensory circuits etc. The problem is that the PDA makes it impossible for him to engage with a lot of these things.

I have been badgering DS’ SEND officer for the LA to pay for an OT assessment. If needs be we will pay for it ourselves but I really don’t have £1000 to spare and want to make sure the LA will actually pay for therapy/implement the recommendations so it all needs to be above board and watertight.

I spoke to DS’ headteacher on Christmas Eve (bless her she called at 5pm from the other side of the country) and she is going to do a CSC referral and request a TAF as well.

I feel like we’re doing everything we can, it’s just not enough.

I would formally complain.

It sounds like the EHCP needs improving. Therapeutic provision can be included in the EHCP. Even if DS struggles with direct provision, he needs indirect provision. That will help. For lots with PDA, provision based around their interests is the way in. For example, if DS enjoys gaming, have you looked at Mindjam or if DS likes animals, animal-assisted therapy.

Is DS in mainstream? Have you considered other placements? For many with PDA as they get older, MS becomes much harder. Same for SS for some DC.

You can request an early review of the EHCP. On their website, IPSEA has a model letter you can use. You can request advice and information from OT (and SALT and CP advice information and updated/further EP input) as part of the review process. However, the LA may not agree or may agree to an assessment but not include the content of the evidence in the EHCP or the evidence may be poor. Following the review process, you will get the right of appeal, so you can appeal if necessary. If you need to appeal and need an independent report but can’t afford that and you aren’t eligible for legal aid, there are charities, e.g. Parents in Need, who can help.

You could formally request a reassessment of needs, but personally I wouldn’t go down that route because it doesn’t guarantee the advice and information will be good or that the LA will agree to include the content of the evidence in the EHCP so you may end up appealing anyway, only having delayed things.

Separately to the EHCP process, look at a home OT assessment. That can look at making the house safer and better meet DS’s needs and is separate from the EHCP.

CAMHS have said they can't accept a referral, but I think you should submit one anyway because it's absolutely a mental health concern. I've recently used ChatGPT to help me respond to their referral questions. You can even feed into ChatGPT your concerns that they won't accept it, and it'll help you navigate that. From what you've said, I suspect that your referral would be triaged as 'urgent' due to threats and actual self harm.

Dd is on the autism diagnosis pathway and currently not attending school. GP can't give her anything for extreme anxiety, or to help her sleep, without her seeing a specialist. She's been in the system now for years awaiting an autism assessment.