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Loosing an ASD sibling

Bunnie

Hello.

My younger brother was diagnosed with ASD and Moderate Learning Delay at a fairly young age. As he grew up he was later diagnosed with Dyspraxia. A few years ago he began having fits and seizures and after some stressful times he was diagnosed with Epilepsy and began treatments.

I have always been close to my brother, 21 months older than him, and as many siblings of someone with autism I was very protective and grew up faster and became more mature than people my age. 

A few weeks ago my brother passed away unexpectedly in his sleep. There appears to be no reason for his death but we later learnt of SUDEP (sudden unexpected or unexplained death in epilepsy) which we believe may have been the reason for his death. We're still waiting for the report however to confirm our suspicions. 

It's been very difficult for my parents and I having been carers to my brother for 19 years. There seems to be very little information or support available for parents and family who have lost a child/sibling never mind how to cope with loosing an autistic child. 

I was just wondering if anyone else has experienced a loss at a young age too? I am only 21 and my whole life has been influenced and orientated around my brother even in small ways. Even my future plans have been focused on areas that my brother was involved in. 

Thanks,

Olivia

  • Former Member
    Former Member

    Hi Bunnie,

    It is a massive shock when this happens. I lost my brother when I was 23, he was 27. He died in a road traffic accident. I thought about him with sadness and anger every day for a long time. The pain goes with time and you get to accept the wrongness of the death at a young age when there is so much life ahead. I was only diagnosed with ASD 30 years later so I guess that I worked through it under autistic influences and didn't really talk about it much at the time. Talking about it won't bring him back after all and I guess I just grieved on my own mainly. You mustn't blame yourself or anyone else, IMO,  - sometimes these things are just unavoidable and nobody's fault and it's easier to get through if you aren't angry and railing against the world. You don't ever have to forget him, I haven't, but perhaps try and do some of the things he would have done.

    Take care,

    sox

  • Hi Olivia, It is a terrible tragedy when one so young loses their life. My brother died at 45 from lung cancer. At least he had half his life, your brother was so young.

    Losing someone close, is something you learn to cope with in time. You will have good days and bad ones and anniversaries can be difficult for a long time.

    I think you will find there are support groups on the internet. I googled bereavement emotional support and found a wide variety of options. You may be able to find support for your parents too. They may also want to talk with you, about your brother now or in the future.

    My advice would be to talk about him to anyone who will listen and you may well find others in your area who have experienced this. There are also a few young people who die in car accidents or from other diseases, so you are not alone.

    There is also the Samaritans. You don't have to be depressed to talk to them, they listen to anyone who needs someone to talk to, at any time of the day or night.

    Best wishes