Brother has very severe autism - can anyone relate?

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.


  • 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.

    Be careful not to miss your actual brother's character whilst your missing him not sharing in your aspirations perhaps. If you consider more what your brother's aspirations and inclinations really are, and you are not adverse to using Facebook or even have an account, there is a Facebook Group going by the name of 'Support Group for Siblings of Autism and Special Needs' ~ whose membership numbers some 500 odd that you may very well find a great deal in common with, and this is their link:


    www.facebook.com/.../


    There is also a fair number of other links if you do a copy and paste and search engine job with the bold text above, if that helps any?

    And of course ~ don't be a stranger! :-) 



  • Thanks for trying to help,

    No problems.

    but your first two sentences suggest that your experience is very different to mine.

    Yes of course my experience is very different to yours, as I identify more with your brother's experience of things in terms of being autistic, and I identify also with family's sense of things in having been annoyed that I stayed in bed a lot, talked too much and often had body buckling limb flailing seizures that were so violent they and others got seriously hurt in attempting to restrain me, or else I messed up and damaged things in whatever room I was in at the time. I would scream, snort, choke, cry, moan, wail, groan, snarl and speak in ways that were seriously unsettling, distressing and disturbing during these seizures, and I bashed myself up a great deal in the process too.  
    The more seizures I had the more 'stress' I got from everybody about being other than I was and doing other than I had, and this increasing social pressure brought on more seizures as no one knew then that they were Psychogenic Non Epileptic Seizures ~ which just happen to be 'stress' induced.
    After my diagnosis aged 45, it gave me and my family the framework to come to terms with the difficulties they had felt in terms of feeling guilty about being relieved that I was in hospital, in care or anywhere else nowhere near them as it meant they could feel relaxed and enjoy themselves rather than being irritated, stressed and anxious in my presence.

    My brother's "aspirations and inclinations" are to stay in bed all day and bite anyone who comes near.

    Your brother's 'spiritual' aspiration to stay in bed is in order to recover from the exhaustion and pain of constantly being in the freeze, flight and fight reflex (which involves what is referred to as Autistic Exhaustion or Autistic Burnout), and his 'animal' inclination for defensively or aggressively biting people due to however many getting him to engage in neurologically typical activities without his consent, and before he was ready ~ involves the wounded animal tendency to bite.


    My family and I have done and are still doing absolutely everything possible to care for and support him.

    There was no intention to imply that you or your family had not been doing everything possible to care for your brother, just that you were saddened about your brother being autistic rather than not,
    which in a community where autistic people are by far the greater majority of the membership, it is a bit an ethics infringement really. I would prefer though that people learn from their mistakes rather than being punished for them instead, so keep in mind the following statement from one of the previous site moderators:

    The myth that autism is a condition with only negative connotations continues and we need to break these myths down.

    https://community.autism.org.uk/f/miscellaneous-and-chat/8174/sorry


    Right now I'm just looking to connect with someone who gets it.

    Hence me providing you with the 'Support Group for Siblings of Autism and Special Needs' option, as it seems that you are only really interested in having your experience of things identified with and affirmed by like minded individuals, rather than understanding and comprehending things from an autistic perspective involving your brother, unless I am mistaken?
    Even if I am not though mistaken ~ your need to relate about how you individually and your family collectively have been affected by your brother's behaviorisms, it is an important and essential requirement also too. So I hope very much that you connect with someone or some group in particular.
    Have a good one and may it contain an infinitude more.
    DT