CAMHS support for younger autistic child with severe emotional distress

[SherbetDipDap]

DS (7) has an urgent CAMHS duty assessment on Monday after I contacted the crisis line last weekend. He had been severely dysregulated for hours and was repeatedly threatening suicide and asking us to hurt him.

He has Autism with a PDA profile, diagnosed through our local CDC. We’re also awaiting an ADHD assessment via CAMHS, as that’s handled separately in our area. I referred him the day he turned 6 (the earliest they accept referrals), and almost 2 years later there is no assessment on the horizon.

He struggles enormously with settling, both physically and emotionally. Any amount of boredom or uncertainty can trigger extreme distress very quickly. He has full-time 1:1 support in school, and even small changes to routine or staffing can completely dysregulate him. His TA is an absolute angel and really understands him so for the most part school is ok, as they just do their own mad craft/research stuff together.

We’ve engaged with the PDA Society, CAPA, local neurodiversity/disability charities, and Early Help. Unfortunately Early Help essentially told us we were already implementing everything they would usually suggest. Last year CAMHS and the CDC also told me there were no services available locally for a child his age, so I’m relieved we’ve at least managed to get him an appointment.

I spoke to his headteacher and SENCO today and both feel very strongly that he needs medical support to help slow his brain down and support his mental wellbeing. I agree, although I also think he would benefit from OT input. My worry is that everything is so siloed! Autism here, ADHD there, mental health elsewhere, and nobody seems to be looking at him as a whole child.

What I feel he really needs is a thorough assessment by a child psychiatrist who can look at the bigger picture and consider all appropriate options, rather than focusing on a single diagnosis in isolation. School have suggested a TAF and possibly involving their Ed Psych if CAMHS aren’t helpful.

Has anyone been through something similar with a younger autistic/PDA child? How did you get professionals to recognise that autistic children can also experience significant emotional distress and mental health difficulties in their own right? And how do you get services to look at the whole child, rather than separate labels?

My son is similar, although he's now 12. Diagnosis was slightly different though as CAMHS all the way through, first referred aged 6. We've had the same psychiatrist (through CAMHS) since he was diagnosed with ASD at age 7 and then ADHD at age 10 and I feel he has always looked at the "whole child" as you say. My son was first prescribed an SSRI for anxiety which just made his suicidal thoughts much worse, but at age 11 he was prescribed an anti psychotic, Aripiprozol. He's not got a diagnosis of psychosis but apparently they prescribe this for the "irritability associated with autism". Irritability is just such an understatement for the type of distress these kids experience! However it has made a huge difference to him and he is now very rarely aggressive or self harming and doesn't talk about wanting to die. I wasn't sure about medication but it just does seem to have taken the edge off for him, so we don't feel like we're constantly in crisis.

We have also finally been put on a waiting list for psychological therapy to help with the extreme anxiety. Not sure when that will start or what difference It will make, but it took a long time to get the extra help and a lot of struggles, repeated referrals from school etc. He's now been out of school for 18 months and it was this that finally spurred CAMHS into action I think.

Family support and social services were largely useless as none of them have the expertise to advise on the complex needs. They would come round and just look helplessly at us. We did have a TAF for a while and I did find that useful to have all the professionals together, even if they were individually useless!

I also think OT is key. It's taken us 18 months to get an NHS OT appointment so I can't say if it's useful or not yet, but I do think so much of the dysregulation is related to sensory processing so I'm really hopeful that this might help. I wish I'd paid privately for this years ago if we'd had the funds.

Also just want to say that you are not alone. It's so hard seeing your child so distressed. It feels so unbearably difficult, but there are many of us in similar situations. Things are much easier for my son now that he is a bit older and can understand and verbalise his own distress a bit better. Not easy, by any means, but easier than when he was 7/8, which was the absolute hardest time.

We got a clinical psychiatrist assessment when we had a social services phone call and they wrote to expedite it. It was also important that the school said his placement was at risk.

They were good. He got melatonin and setraline which helped and they pushed for OT which ended up delivered by the ehcp . He didnt assess him for adhd though. So I dont know what would have happened if he felt adhd meds were better. I assume he had the power.

Does your chikd sleep?

OT was a god send for us so I highly recommend it.
(Edits to say he has asd, demand avoidance and anxiety. Self harmed and fully disregulated for many years

Your CAMHS duty assessment will look at the whole child more than a typical psychiatrist would. Doctors have diagnosis and medication as their remit, which is inherently part-child. Some are good, of course, but the likelihood is that Monday's assessment will be with a mental health nurse, whose whole training is whole-child. If they think medication is urgently needed, they should be able to expedite this (or they might be a prescribing nurse, so even better.)

I’m so sorry, this sounds incredibly hard.

After several calls with CAMHS we were explicitly told they do not work directly with children under 9 who present as neurodivergent. They offer MHST coaching for the parents and can put the child on the pathway for an assessment (which sounds like you already are). I could not believe it when they told me this. Other than sign post to the organisation you have mentioned, they could not offer us anything at all for our child (6). It is appalling. Maybe in your area it’s different, I hope so.

We are going to do right to choose once for an assessment, rather than wait 2 more years. We’re also considering a child psychiatrist for the same reasons you outlined. I believe our child has significant anxiety in addition to the ASD/pda/adhd. And to know the best approach I want an expert to tell us what to treat as a priority.

I really sympathize with you. In a similar episode our GP told us to just take our child to a&e to try and get some help, after CAMHS told me they aren’t a crisis service. Help being melatonin or other meds, but acute care cannot prescribe anything for a child. We were signposted to family services, back to CAMHS, etc. Totally useless. It has to be a specialist who prescribes, ie a psychiatrist or the CAMHS team. Accessing help for young children in crisis, on the nhs, seems impossible. It’s shocking and so distressing for parents, who are left trying to keep their child safe.

A private psychiatrist would be the quickest way to access help, in my experience, but maybe others could advise differently. We’re also waiting on OT sessions, happening in the summer which hopefully will help a bit. Ed psych sessions might also help, but it’s finding the right fit who your child will feels safe to engage with.

Its very stressful to navigate, and you feel like you’re the project manager, having to source all the different agencies.

Do you have a neurodevelopmental team in your area? Ours is housed within CAMHS and provides a full neurodevelopmental assessment which is a multi agency assessment looking at every part of the child’s development. They only assess the most complex children because it’s a long assessment process with a multi-disciplinary team but the difference it’s made to my DD is immeasurable. I had to really fight for the referral, and then the waiting list but it’s a good, whole child process.

The other thing you could look at is a referral to community paediatrics. They helped navigate the different specialisms my DD needed and held the “whole child” part of things so she still saw different departments etc but her assessments were pulled together in one place with a doctor who knew her well. She’s been with community paediatrics now for about 8 years and they have a good sense of how things have changed as she’s grown.

Its very hard, but do your research and don’t be afraid to stand your ground if you see a service you think would benefit your child - it can feel like a full time job getting the help they need.

@Jellycatspyjamasjust for reference, in our experience, community paeds wouldn’t see us and redirected us back to CAMHS… they would only see children under 5 for neurodevelopmental reasons. Over 5 it’s the CAMHS pathway.

the waitlist for the neurodevelopmental assessment with CAMHS is 36 months, in our area at least.

My DD was accepted by community paeds aged 8 and has stayed with them throughout, different areas do things differently (which is a pain), but if @SherbetDipDap can argue them into community paeds they can be an excellent way of holding everything together.

urgh. I’m glad it worked out for you! I agree it would be a great option if they accept you.

Hello, just thought I better update. Life is busy and my brain’s been a bit full and wobbly to engage with this again until now.

Monday was a mixed bag. Nothing monumental happened but the nurses agreed that we have done everything they would usually signpost to at a duty assessment, and that school are also already implementing everything that they would have suggested. (I had a 5 page list of everything we had tried 🤣) They really listened and DS whilst reasonably despite being in full AuDHD flow - drew atoms in states of matter on a whiteboard, climbed the furniture, hide behind the chairs, lay on the floor. corrected the nurse a number of times, made no eye contact, listed endless Greek mythology facts, avoided answering most questions, and drew various minerals/mineraloids and listed their properties. Said ‘well this was pointless’ a number of times 🤣

They have referred him for an initial psychiatrist assessment but did say that they don’t usually work with children of his age so we will see whether it’s accepted. They did suggest OCD might be a possibility (his cousin is diagnosed with OCD/ADHD/ASD so it wasn’t a massive surprise).

They also suggested doing a RTC referral for ADHD assessment as their waiting list is so long and can’t usually be expedited. They gave the impression that they were certain that he does have ADHD and does really need medication. They said that he wouldn’t be removed from the CAMHS waiting list for assessment or titration just because we’d done RTC so we’re throwing everything at the wall to see what sticks.

We have another duty appointment in 5 or 6 weeks. So if we’re no further along by that stage we’ll have to tap the bank of grandma for a private child psychiatrist assessment and OT. I know ILs will pay for everything and anything he needs but we have also just borrowed a large sum of money from them to move house so I’m very mindful of overstepping.

Hi OP that sounds like some progress, glad they will at least refer him to the psychiatrist.

My 9 year old has an ADHD diagnosis (assessment for autism later this month), and when she was in mental health crisis this year we similarly suffered from the NHS silos issues.

Private therapists told us to stay under CAMHS as this would be multi disciplinary, but their help was woeful. A bit like @christmasoverwhelm ‘s experience. We were told they do not recognise mental illness in under 12’s (!) and had no therapeutic offer for them. Just various reasons she didn’t fit in X box for help.
(DD had been off school for months & spent 5 days in a hospital paeds unit by this point due to her self injurious behaviour and lack of food intake by this point! )

Anyway we went private for a psychiatrist. DD has started on Guancafine and it’s been great so far. She also got out of the worst of it herself with tons of support from us, private CBT therapist etc.

The psychiatrist felt her debilitating anxiety (and related anger) was very much part of the ADHD.
She is much less depressed and anxious now but it’s been a tough road.

I hope you have a better experience with CAMHS but yes don’t wait around for medication as it’s such trial and error that it’s worth getting going asap while they’re suffering. Good luck I am sure you’ll get your happy boy back.

OT made more difference than anything else, when I found the right OT. Unfortunately she left the country, but had given me such a wealth of information that it was like a paradigm shift. I learned better questions to ask.

We had a similar silo issue, because ds was diagnosed with autism, camhs rejected him every time, despite the autism side of the services referring him for psychiatric support, which they do not have. At the height of the crisis, the letters over and back between the two branches are shocking.

Unfortunately Early Help essentially told us we were already implementing everything they would usually suggest.

The amount of times I waited months for an appointment only to be told I was already doing what they would have told me to do. But my biggest piece of advice is educate yourself, and if you find someone who is good with your dc, shower them with gratitude and support. And pay for what you can afford - private assessments, OT, smaller school if that’s in reach for you.

Don’t rely on help coming.

We went through something very similar with our autistic/PDA child and honestly the biggest challenge was getting professionals to stop viewing everything through separate “boxes.” What finally helped was having school firmly advocate that his distress was real, severe, and impacting daily functioning, not just “behaviour.” A good psychiatrist or Ed Psych who understands neurodivergence as a whole picture made a huge difference for us. You sound incredibly informed and proactive already, and it really does sound like he needs joined-up support around regulation, anxiety, sensory needs and possible ADHD, rather than services working in isolation. I’m really glad CAMHS are finally seeing him and I hope Monday is the start of people properly listening.

I know this isn’t my thread but just wanted to say thanks so much to everyone for sharing your experiences, it’s really validated my own experience to hear stories so similar to ours. And also encouraging to hear that the avenues we are pursuing are the right ones.

I 2nd this. Thank you.

Yes I will also echo pp this is a great support as feel we are at rock bottom with our 9 year old adhd, asd, anxiety and ocd child. We paid for a private assessment afew months ago and thought that would be the key but it really is only the beginning. It feels like whack a mole with which area will rise it’s head the most at any given time but right now the ocd side is right up and is causing her to be very distressed. We started private therapy (as CAMHS refused to take on as not actively suicidal…) but it is slow going and I feel she needs something else. Have a GP appt but think they will say can’t do much more.

Does anyone have experience with EMDR for childen? As her ocd stems from an awful sickness bug which has traumatised her to the extent it takes over most of her thoughts. I feel if we reduced this then other things may settle.

If not then we may look at SSRIs. I would hate to resort to this but sometimes you have to do what is best for your child at the time.

Sorry derailing the thread a bit. If ILs are willing
to pay I would def take them up on the offer. They won’t want to see their grandchild suffer as the waiting lists and delays in using nhs etc are so long and no guarantee of support at the end. Good luck with it all. I never expected to be in this situation and it is horrendous but trying to stay strong as our kids need us.😊

Our niece had EMDR for her OCD. It appears to have been a very positive approach. Obviously it’s not a magic cure, but it has helped a lot.

I spoke to someone from children’s social care yesterday. She’s going to do a referral to the children with disabilities team. No idea if he’ll meet their criteria, but it seems like another small positive step.

Make sure you have also applied for DLA as eventually you can save enough of that to pursue private ADHD assessment and also therapy, whereas you might wait a year for CAMHS to be told they don’t treat autistic people.

I’ve started the forms like 6 times in the past 18 months and still haven’t got through them, but I’m determined to actually make it all the way through.