Newby-how do people manage other family members?

Hi,

I'm new to this forum and have so many questions.  My son is 10 and despite me raising concerns with various people for years it is only recently it has been suggested he may have ASD.  I don't mind that, it isn't great but he's been my son for a long time and a title won't change that, I was just hoping (naively) that people may get on board with supporting us a bit.

My son has managed to develop a whole range of coping strategies for himself when not at home (mainly just keeping a lid on how he's feeling until he gets home) but this has led to him being bullied at school, told he's irritating and ultimately not trusting people to help him because of the way they have dealt with him in the past.  So, his school are being better now but are frantically trying to gather evidence as they have ignored this for a long time.  The GP was useless so our referral was turned down, we can't get the school nursing service to answer us and the school are sending their SENCO on heaps of courses because they basically haven't got a clue (I'm glad they are trying though, it's better than nothing).  

Anyway, my husband is being as good as he can be although he's rapidly trying to get to grips with our situation but my family are being useless.  I took my mum to a therapy session with me that was recommended by CAMHS and she sat there saying my son has nothing wrong with him, he's just manipulative (she even thinks his toileting issues are part of him being manipulative).  This weekend she took him to London with his cousins and he coped ok when he was with them but one of them told him he was irritating and called him an idiot.  Rather than tell her that this is not how to treat people my mum and step dad let her get away with it and told my son to ignore her.  Well, my son now feels the people he should be able to trust can't be trusted and he feels let down.  This led to moodiness yesterday culminating in an absolute breakdown, his homework not getting done and him being in no fit state to go to school today.  I'm just at the end of my tether with trying to cope with it all and my family who just make it worse because they are so arrogant they think i'm wrong and they are right.

Parents
  • Hi Pixie Hill, and welcome!

    Families!  It's a sad and all-too-common story.  People have no criteria (as has been pointed out on another thread) with which to understand autistic behaviour, so their only response is to compare it to the 'correct' behaviour that they themselves know and understand.  The 'manipulation' thing is something I've heard lots of times over the years in dealing with autistic people in care.  Challenging behaviour in highly autistic people is a form of communication.  It's about trying to relay information in the only way open to the person.  A person I work with will often, during periods of anxiety, change from being placid and happy to breaking things, kicking things, hitting out - behaviour that, to the 'outsider', would most likely be perceived as 'naughty', and demanding of punishment - which is exactly the wrong way to approach it.

    I was bullied at school, too - by teachers as well as fellow pupils.  I've been called 'idiot', 'nitwit', 'bloody fool' and much worse for most of my life - though less frequently in more adult years.  Children, though, can be especially thoughtless and cruel.  Being called an idiot in school is bad enough if you're a sensitive individual, anyway.  But if you're autistic, it can be crushing.  Add to that the other social communication difficulties you're having, too...

    One of the problems that families can have is difficulty in accepting that one of their members is autistic.  As if it's somehow a shameful and embarrassing thing: something that should be hidden, ignored, not discussed.  Hence the efforts to try to 'normalise' the behaviour somehow, and blame it instead on naughtiness or bad parenting.  In spite of the higher profile and better understanding shown of autism in the media, people still don't always 'get' it.  And people are often suspicious or even fearful of what they don't understand.

    Take a look at some of the resources on this site to see if there's anything that can help.  This might be a useful place to start...

    http://www.autism.org.uk/about/family-life.aspx

    The old saying 'There's none so blind as those who refuse to see' has some relevance here.  It can be really frustrating, too, if you keep on and on (as I have) trying to explain things to people, only for it to fall on deaf ears. If it's any comfort, at least you know you can always come here and talk, and be understood.

    Hopefully, some others will have some suggestions for you, too.

    All the best,

    Tom

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