Hello! First post... wish I could make people understand :(

Hello,

I’m not even sure I belong here! My 9 year old son struggles with handling socialising and emotions, while being completely obsessed with animals, wildlife and conservation issues. After years of making excuses “it’s just a part of his quirky personality”, “he is the youngest in the class” etc etc  I decided 18 months ago that things definitely weren’t right, spoke to the school and took him to my GP to talk about my concerns regarding autism, possible Aspergers and anxiety. School thought (and still does that I am making a fuss about nothing, he is meeting all his academic milestones ) GP was more helpful and referred us to CAMHS They said it could be handled at school and referred us to step 1 which was basically councelling. Back to the GP and we were referred to paeds. In December we were seen by paeds who said the referral went to the wrong place he was a hospital consultant and we should have gone to community paeds but he was certainly on the spectrum and we needed to be screened. Last week we were seen by CAMHS step 2 who gave us some helpful CBT exercises for the anxiety and told us we needed to be screened for ASD. We have now waited about 18 months in total. Has anyone else waited this long?

No one understands what we are going though. We are losing friends that we have had for maybe 20 years. People see what they want to see. People see a child who doesn’t behave and parents who don’t discipline effectively. What they are actually seeing is a child who doesn’t understand the details of acceptable social behaviour and parents who are at the end of their coping mechanisms. I wish I could make people understand what we are going through.

Please tell me other people have felt like this. I’m having a bad day today and I feel so lonely and stressed that I have had to fight the system every step of the way.

Thanks 

Parents
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  • Hi - do you have a local ASD support group you could link up with? My son was diagnosed last year, but for at least 3 years we have been part of our local ASD group, and found it really helpful. We linked with people who understood what we were going through, in terms of getting a diagnosis etc. And it also helped with tips on dealing with behaviour, or even on advice about local days out etc. Hope you can get similar help, as it’s really useful - made us realise that others were in similar situations etc. Xx

Children
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