Wednesday 14 May 2014

why don't professionals listen??????

Kathryn went to the Bristol Autism service last November, after years of battling, to go through the DISCO assessment. after 4 sessions, which I sat in on as she wouldn't do without me, they ummed and ahhed between ASD with social anxiety disorder or social anxiety disorder with very strong autistic traits. they landed down on the later, pronounced with CBT she could be cured and sent us away! during the assessment I couldn't believe the coaching, at one stage she was shown a dvd, bad acting, of a relationship, at various stages this was stopped and Kathryn was asked to interpret what was going on, inevitably she didn't get it and said so, dvd was often rewound, explained to her then questioned explained to her, then she got it. well apparently by getting it , however it occurred, showed she had empathy, she couldn't be on ASD spectrum. what a load of rubbish, people with ASD CAN show empathy and actually in this case she wasn't. anyway a few weeks on and report arrived, it also stated she had no sensory issues, rubbish , as I had told them, she has loads, sound, taste, smells, touch she reacts badly/sensitively to much of the world. also the report said no obsessions, want to explain to me the constant watching and rewatching of amine, or the 101 china birds lined up in an exact row.! I actually agree she has social anxiety disorder but I believe its caused by her being on the ASD spectrum. anyway one of the suggestions was Kathryn had a referral to the Fairbridge programme run by the princes trust. we got contacted about it today. she would have to get into and through central Bristol every day, she won't go out of house alone, and shakes and gets very upset because all people are scary. then, according to the website, she will be spending her course with 85% of those who are homeless, substance misusers and offenders, she'll love that! being near someone who smokes makes her vomit! I spoke to someone who works on youth offending team a while ago, he says there is no way this is suitable for Kathryn and no way I can send her on it. wonder now how to convince the GP who is still convinced Kathryn's only issue is being chronically shy! I really have to fight the original diagnosis as wrong, but have let it drop as I am just to exhausted with day to day life to complain and fight for everything. why should I have to continually fight for my sons and daughters and for myself to get the correct diagnosis's and support that we really need. why don't the professionals listen to my and my kids issues and feelings. we lay ourselves bare to no avail.

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