Help! - System fails people with complex autism needs

Graeme S said:

We tried CBT with him, but this does not really work with someone with autism.

Hello, I can only speak from my own experience but I am autistic myself, with ADHD, OCD, and PTSD, I just wanted to say I found CBT to be rubbish too, the one-on-one sessions were okay as a starting point but when put into the group of strangers for group sessions that's where my communication issues made it night impossible. It only adds to the anxiety to have to spill your guts face to face in person to a bunch of strangers in a fluorescent lit room. I dropped out before my first group session (couldn't even face it) and got a CBT book and started writing my own notes in the pages what I thought could work and what I wanted to break into chunks and what to throw out entirely to make it go at a pace that I could do on my own with a bit of support from my family.

Also from experience the OCD and trauma is what I consider more disabling than being autistic, because OCD is an inescapable cycle of negative thoughts, trying to break the cycle is difficult. And I had to learn a lot of self compassion and cut myself some slack to break the cycle because all the time I was afraid to leave the house and had developed a rod for my own back feeling safe always being at home it made me agoraphobic and a victim of what is called Learned Helplessness. It's only by having repeated small safe exposure to the things that gave me anxiety that I learned I could cope and build a sense of self esteem and self confidence. Think Exposure Therapy but at a slower pace allowing for sensory issues and having time to reset properly before I'd have to go be brave again. I also found Meltdowns easier to manage when I started to treat them like panic attacks, using grounding methods, and that sort of thing because anxiety was the biggest contributor to my meltdowns. In my 20s I couldn't leave the house, I couldn't drive, and I'd never have re-entered education, but I can and do all that now.

I think effective therapy is possible for autistic people but it has to be tailored very specifically to the issues of the individual, and individual led, that's why one-size-supposedly-fits-all approaches to therapy like NHS run CBT doesn't work.

Can you get your son to make a list of everything that bothers him and what he's most like to improve first? Then identify what triggers and what exacerbates the issues he has so you can help him make comprehensive plans to try and tackle them in a way that isn't too much, too fast and build himself up from there.

Some days it's not easy, sometimes if I'm tired, or there's a lot on my plate I still get little episodes, but it's not like it used to be and I can forgive myself and keep going because everyone has bad days.

Graeme S said:

We tried CBT with him, but this does not really work with someone with autism.

Hello, I can only speak from my own experience but I am autistic myself, with ADHD, OCD, and PTSD, I just wanted to say I found CBT to be rubbish too, the one-on-one sessions were okay as a starting point but when put into the group of strangers for group sessions that's where my communication issues made it night impossible. It only adds to the anxiety to have to spill your guts face to face in person to a bunch of strangers in a fluorescent lit room. I dropped out before my first group session (couldn't even face it) and got a CBT book and started writing my own notes in the pages what I thought could work and what I wanted to break into chunks and what to throw out entirely to make it go at a pace that I could do on my own with a bit of support from my family.

Also from experience the OCD and trauma is what I consider more disabling than being autistic, because OCD is an inescapable cycle of negative thoughts, trying to break the cycle is difficult. And I had to learn a lot of self compassion and cut myself some slack to break the cycle because all the time I was afraid to leave the house and had developed a rod for my own back feeling safe always being at home it made me agoraphobic and a victim of what is called Learned Helplessness. It's only by having repeated small safe exposure to the things that gave me anxiety that I learned I could cope and build a sense of self esteem and self confidence. Think Exposure Therapy but at a slower pace allowing for sensory issues and having time to reset properly before I'd have to go be brave again. I also found Meltdowns easier to manage when I started to treat them like panic attacks, using grounding methods, and that sort of thing because anxiety was the biggest contributor to my meltdowns. In my 20s I couldn't leave the house, I couldn't drive, and I'd never have re-entered education, but I can and do all that now.

I think effective therapy is possible for autistic people but it has to be tailored very specifically to the issues of the individual, and individual led, that's why one-size-supposedly-fits-all approaches to therapy like NHS run CBT doesn't work.

Can you get your son to make a list of everything that bothers him and what he's most like to improve first? Then identify what triggers and what exacerbates the issues he has so you can help him make comprehensive plans to try and tackle them in a way that isn't too much, too fast and build himself up from there.

Some days it's not easy, sometimes if I'm tired, or there's a lot on my plate I still get little episodes, but it's not like it used to be and I can forgive myself and keep going because everyone has bad days.