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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

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  • 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

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  • 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

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