My undiagnosed brother

My brother has never had a diagnosis of autism, and he is now 30 years old. We have always known that he is autistic, despite doctors saying he wasn’t at a young age.

My brother lives at home with my parents, and when he is at home, he just sits there re-watching the same programmes he has for years. He does work, but only part-time in his job at a supermarket, where he has been for over ten years. He finds it hard to communicate with his colleagues, and hasn’t had any friends since school. I would say his best friend is my mum. 

As he has got older, his anxiety has increased significantly - he has panic attacks often, and wakes up screaming in the night thinking he can’t breathe. He has started drinking on his own occasionally, in bars, but the night often ends with him having a panic attack and calling an ambulance. His depression and anger has increased, as he sees everyone around him moving on with their lives. 

We have tried to encourage him to move out, as he wants to live like other people his age, but he has no money or motivation to do so. The only thing he cares about is his appearance, which he scrutinises constantly, and he blames my mum for the way he looks. 

We would love for him to become independent but we don’t know how that can happen. He does not have a practical way of thinking or acting, and my mum still does everything for him. 

We really don’t know what to do. He wants to sort his life out but he lacks the motivation and he doesn’t know how to do it. We know he wouldn’t be able to survive on his own right now, and it’s killing us. My parents and I have also been diagnosed with depressed and anxiety due to the constant worry about his future. He also does not want a diagnosis because he doesn’t want a label, but he knows he is autistic.

What can we do?

  • I'd chat to him about the pros & cons of being diagnosed - if he had a  diagnosis, there's a good chance that he would qualify for the PIP payment - a benefit that is not means-tested for people with disabilities.    This would help his finances and the diagnosis would open the door to support that may help him to live away from home.

    You might also want to talk to CAB in relation to his working hours and the ability to claim some benefits that, again, would help his finances.

    At his age, with no friends, what would be the negatives against a diagnosis?    What causes his reluctance?

    I suggest you think about the huge steps you're asking him to make and break them down into many smaller steps that are manageable and not too frightening for him.