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?