Advice on how to get support for carers of child with severe / Level 3 autism?

Hi everyone

I help look after an 11-year old child with severe autism – with many of the characteristics of what is called Level 3 autism. So they are non-verbal, with extremely limited communication skills and not toilet trained. I am keen to get some support and advice on looking after the child but I’ve found many of the websites, books etc. on autism generally cater for more milder forms of autism. I find this particularly frustrating because generally it will be the people looking after children with severe autism who will likely need the most help.

I wondered if anyone can recommend any organisations, website, discussions boards, community groups, books that provide support to those looking after children with severe autism?

Any help would be gratefully received!

Best wishes

Iain

Parents
  • I think one of the biggest issues with toilet training is that it's likely a knock-on effect of having trouble communicating too based on what you said, because autism can be in either extreme of hyper-sensitivity or hypo-sensitivity, and even if the child can sense the need to go to the toilet they may have difficulty communication that if they need help to physically go to the bathroom or difficulty having the need to take oneself to the toilet when they feel those urges explained to them when that happens.
    Would these help perhaps? https://makaton.org/TMC/TMC/About_Makaton/Help_with_autism_and_communication.aspx (for the communication issues) https://www.autismparentingmagazine.com/autistic-child-sign-language/ .


    Also (this is only half experience based and I'll explain why as I go) it might not be helpful to have pull up nappies all the time for older kids who are under sensitive as unless they feel at least some meaningful bodily change they might not be able to link the sensation of "I need to go" with "oh I went (so that tingle/small cramp beforehand was my cue to go to the loo)". I'm not saying I've ever had to go through toilet training with a 11 year old, but if I had to I would probably do it the same method I did when I potty trained my autistic preschooler who was undesensitive in that regard; No nappies, no shame, no punishment for failure, just expect puddles and be ready with positive reinforcement for any forward progress.

  • P.s. I think that community is here tbh, but I have seen parents and carers of children with more complex care needs typically aren't regulars, but NT/advice drop-ins - or tourists (because they come in look around and then leave again usually) as I affectionately call them in my head. (I'm autistic myself and I mean that nickname from a place of love.) Probably because they are too busy to be on here with any great regularity. So often the members here are actually autistic people, but by dint of being on the forum we obviously are able to communicate okay (at least enough to be online and chatting here). That doesn't necessarily mean our autism is mild though just because we can communicate online, just want to make sure not to promote a flawed stereotype there.
    Not all of us are parents and carers ourselves though either so depending on who is online to see your post when it is fresh on the home feed list we may or may not be able to offer any great help, or may say nothing even rather than risk giving you bad/non-applicable advice. But by all means if you want to stay here please do, we could use more regulars who are carers and have that experience and may be able to help teh next person who come sin asking what you have asked.

Reply
  • P.s. I think that community is here tbh, but I have seen parents and carers of children with more complex care needs typically aren't regulars, but NT/advice drop-ins - or tourists (because they come in look around and then leave again usually) as I affectionately call them in my head. (I'm autistic myself and I mean that nickname from a place of love.) Probably because they are too busy to be on here with any great regularity. So often the members here are actually autistic people, but by dint of being on the forum we obviously are able to communicate okay (at least enough to be online and chatting here). That doesn't necessarily mean our autism is mild though just because we can communicate online, just want to make sure not to promote a flawed stereotype there.
    Not all of us are parents and carers ourselves though either so depending on who is online to see your post when it is fresh on the home feed list we may or may not be able to offer any great help, or may say nothing even rather than risk giving you bad/non-applicable advice. But by all means if you want to stay here please do, we could use more regulars who are carers and have that experience and may be able to help teh next person who come sin asking what you have asked.

Children
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