Not sure what to do now

[Holly221288]

Hi everyone,
I’m really hoping someone here might have advice or experience – I’m completely stuck and feeling really alone in this.

My 9-year-old son is autistic with extremely high anxiety and what appear to be significant mental health difficulties. He’s been out of school since last September. The EHCP names EOTAS, but no actual provision has been put in place apart from a remote mentor from MindJam, who he has slowly built some trust with.

He can’t tolerate anyone coming into the home – not professionals, not family, and often not even his own siblings. We spend almost all our time together in the bedroom. He needs constant supervision and control to feel safe, and I’m not allowed to leave the room or do anything independently. He controls every detail – even down to the light and noise levels – for example, we can’t have the curtains open.

He won’t engage with Zoom or video sessions at all, and phone calls are nearly impossible unless I schedule them during his MindJam sessions, when he’s more regulated. CAMHS have said they can’t help unless they can see him, but that simply isn’t possible right now – every attempt to introduce someone new causes a major deterioration in his mental state.

Everyone keeps saying, “we need to think about how this could be possible,” but no one is offering a realistic or trauma-informed plan that actually meets him where he is.

I’m a single parent and feel completely overwhelmed. Is there any kind of mental health support available for children in crisis who can’t tolerate interaction or professionals in the home? Surely there has to be something that doesn’t rely on traditional engagement?

I’d be so grateful for any advice or experiences. Thank you x

I can’t advise but you have my sympathy. Does he have a PDA profile? My son is so incredibly anxious but has grown up and manages much better now he’s older (so there is light at the end of the tunnel) and CAMHS were the same with him. He needed to engage with therapy before they would consider medication. I have recently managed to get him anti anxiety meds after explaining many many times that he can not engage in therapy as he is too anxious. It’s been a long hard road though.

@Trinity69 thank you so much for replying and so quickly. He has a significant PDA profile. I’m so sorry you and your son have been through this too. But thank you so much for the light at the end of the tunnel. How old is your son now?

I’m so sorry OP. That sounds so incredibly difficult in every way for you. It’s awful
that the mental health services are expecting your poor son to fit into their model, rather than fitting around his needs.
I had a friend whose autistic husband bought a self help book on cbt when he was in mental health crisis as a young man, and he said it really turned him around. I used a cbt workbook for kids with my son. I don’t know if something like that would be of use to your son. It something you could do together, so he wouldn’t need to engage with anyone else.

@creakingwheels thank you for responding. I will definitely look into this!

That sounds horrendous for both of you. What about your other children?

This sounds incredibly difficult for you and for him. I agree with pp's regarding self help books, you're not a professional BUT you know your child better than anyone else and you're with him in his safe space every day, there are children's at home CBT books on Amazon that you can buy and work through with him. I used one with my son, it's not a fast fix it's a slow process but absolutely worth it, my son was similar but not identical - he would attend therapy but absolutely could not talk about his trauma or issues, would happily talk to the therapist about gaming and animation etc but the moment they tried to talk about his mental health he would either shut down or have a panic attack, so we're now attempting EMDR since this doesn't involve him talking.