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Brother has very severe autism - can anyone relate?

NAS65946

My brother is nonverbal, lives in residential care and his behaviour is, and has always been, very challenging. I'd love to meet other siblings with similar experiences but I don't know how to find them. There seem to be lots of threads about Asperger's syndrome but very few about classic/severe/Kanner's autism. Conversations about school, work and friendships usually just make me sad, because they're things he'll never be able to experience.

Parents

  • Hi there... im a mother not a sibling, but i had my son when i was 19 so in lots of ways we are more like brother and sister. 

    My son is now 27 and is nonverbal, he has Downs Syndrome and severe Autism, and can be EXTREMELY violent. I think this mostly comes down to not being able to communicate what he wants and needs, i always equate it to being in a foreign country and not speaking the language... can you imagine how terrifying that must be?

    it must be difficult for you to monitor his reactions because he lives in a residential place, you dont know whats going on when you are not around, and with the best will in the world there are likely to be gaps in his care (staff holidays sickness etc) and this will no doubt have an impact on his behaviour.

    i dont know if you are an older or younger sibling? I made a conscious decision to not have any more kids, because i always felt i didnt want to pass the care of my son on to someone else, and i KNOW if id have had other children they would have been sidelined for my son, just purely because of the amount of attention and care he needs. I can imagine its such a conflict of love for your brother and frustration for your brother i can feel that in your msg.

    anyway... i wont go on too much, but please msg back if you want to chat, you deserve to be seen as you and not your brothers sibling! I am non judgemental and very honest, some people have their head in the clouds about the impact of having an Autistic family member rather than being THE Autistic person in their family, but unfortunately thats the nature of the beast lol.

    take care stay safe 

    sooz

Reply

  • Hi there... im a mother not a sibling, but i had my son when i was 19 so in lots of ways we are more like brother and sister. 

    My son is now 27 and is nonverbal, he has Downs Syndrome and severe Autism, and can be EXTREMELY violent. I think this mostly comes down to not being able to communicate what he wants and needs, i always equate it to being in a foreign country and not speaking the language... can you imagine how terrifying that must be?

    it must be difficult for you to monitor his reactions because he lives in a residential place, you dont know whats going on when you are not around, and with the best will in the world there are likely to be gaps in his care (staff holidays sickness etc) and this will no doubt have an impact on his behaviour.

    i dont know if you are an older or younger sibling? I made a conscious decision to not have any more kids, because i always felt i didnt want to pass the care of my son on to someone else, and i KNOW if id have had other children they would have been sidelined for my son, just purely because of the amount of attention and care he needs. I can imagine its such a conflict of love for your brother and frustration for your brother i can feel that in your msg.

    anyway... i wont go on too much, but please msg back if you want to chat, you deserve to be seen as you and not your brothers sibling! I am non judgemental and very honest, some people have their head in the clouds about the impact of having an Autistic family member rather than being THE Autistic person in their family, but unfortunately thats the nature of the beast lol.

    take care stay safe 

    sooz

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