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Autism And Fragile X


Cait
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Research is always interesting to read but at the end of the day doesn't help people on the ground dealing with children day by day. It does help parents to understand that they are not to 'blame' There is so much to learn and understand both about Fragile X and ASC and how to support families and children with either, or both of these conditions. Perhaps people might be interested in responding to the Adult Autism Strategy. It is only in recent times that Aspergers has been recognised. There are many adults with Aspergers who find it very difficult to cope within our society and they have no 'diagnosis'. They do not receive support or benefits and many are to be found within the prison system. Yes they have to suffer the consequences of their actions, but appropriate support when they were young and training across the public services might have avoided this.

http://www.nas.org.uk/nas/jsp/polopoly.jsp...251&a=19386

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Research is always interesting to read but at the end of the day doesn't help people on the ground dealing with children day by day.

 

Absolutely, and I wasn't intending to suggest otherwise, but research around these two conditions is interesting, and it's also reassuring to know that researchers are still 'throwing things up'

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I know I'm naturally impatient, but what I hate about the way these research papers are reported is that I keep waiting for the "and so this means..." finale which never quite comes. The report says that the research gives indications for when interventions with children with autism or Fragile X, but doesn't tell us when these might be.

 

And I'd also like to more about what is going on within the womb when these brain changes are happening - something else for pregnant mums to worry about, no doubt.

 

I guess these answers will only come after more research and much later on, but in the meantime as Cait says, it is good to know that the picture is getting clearer.

 

Maz

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I think for those of us living with someone with this condition for 35 years or more makes us a bit cynical about new research which tells us more or less what we knew anyway. These children grow into adults, and they don't attract much support as adults in the way that children do. What happens when they finish the school system? At the end of the day it doesn't change anything unless of course there is a cure..perhaps some time in the future there will be as a result of research, who knows? In the meantime we have to make sure that there is something in place to support the way things are now.

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Thanks for the link, Cait. The more exposure this type of research has, the better. Issues such as this have to be talked about in the public domain, frequently, so that campaigns like the one that Jacquie has linked to have weight.

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