'So alone with my autistic sons and no friends'

09 February 2023 , 17:48

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'Just as I began to get myself sorted, my legs started to leak so I went to my doctor who sent me to hospital for a biopsy. The results confirmed I have lymphedema in both my legs' (Image: Getty Images)

Dear Coleen

I’m a single mother of two sons who both have autism. I fractured both my ankles a couple of years apart, then in 2019, I had a DVT in my leg and clots in my lungs.

Just as I began to get myself sorted, around my 50th birthday, my legs started to leak so I went to my doctor who sent me to hospital for a biopsy. The results confirmed I have lymphedema in both my legs.

As well as the physical health issues, I feel so lonely. My parents both passed away several years ago. I do have a sister and a brother, but they don’t talk to me because I kept in touch with my brother’s ex-wife as we really got on.

I ended up moving away from my hometown, so I could be nearer to my brother’s ex and she could help with my sons when they have meltdowns, which can be very stressful. However, she’s not in touch any more either and all my friends live back in my hometown. I’d like to go back, but it would really upset my youngest as he has severe autism and doesn’t like change. But I’m lonely – what can I do?

Coleen says

I’m aware of how painful lymphedema can be, as my sister has it in both arms. It’s important to keep up with medical appointments to treat and manage the symptoms and stop it getting worse.

Baby boy has spent his life in hospital as doctors are 'scared' to discharge him

If you’re feeling low physically, that’s going to impact your mental health, too.

I think it’s also worth getting in touch with autism.org.uk, if you haven’t done so already, to find out about any support available in the community.

I understand your fears over change, but if moving home and back to your support network is what you want to do, then start to think about how you could manage it to minimise the stress on your sons.

Again, the National Autistic Society could help with advice around this. I have a friend with a severely autistic son who had the same concerns about moving house. The way she handled it was to do it gradually, and when they moved to their new place, she made sure her son had all his familiar things around him.

You could start talking about the possibility of moving and maybe do a few visits.

I suppose what you have to think about is what’s best for the long-term future of your family. I think careful planning is key over the coming weeks and months. I also think it’s worth talking to your GP about counselling. Good luck.

Coleen Nolan