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So what now? CYPS aren't seeing what we see

(5 Posts)
WhoDrewOnTheWall Wed 04-May-16 11:22:29

DS is 6yo and has had an assessment from CYPS as he shows strong traits of ASD and ADHD, DH and I were of the opinion (based on research, personal experience and living with DS) that he has ASD.

Long story short is that CYPS have come back to say that there isn't string enough evidence to point to a diagnosis and that the evidence they do have says he doesn't not have ASD or ADHD, however he does have emotional issues and anger issues. They want me to go on a parenting course (just me, not DH) that I already did last year when I was looking at how best to support DS while we waited for his assessment. And they want school to deliver an anger management programme to him.

I think they're wrong and that the anger and emotional issues are part of him having ASD. They've said that they won't pursue further evidence and he's been discharged from their service but I can go to the GP for re-referral at a later date if I feel it's appropriate.

I feel so shit. I don't want him to have ASD so I should probably be over the moon right now, but I'm not. I really think they're overlooking issues and writing him off as a product of shitty parenting and that in a few months time we're going to be back at their centre going through all of this again as he continues to struggle.

Where do I go from here? Has this happened to anyone else?

WhoDrewOnTheWall Wed 04-May-16 11:23:01

*should say "He doesn't have" not "He doesn't not have"

imip Wed 04-May-16 14:24:15

Sorry, I'm not sure what cyps means - I know it's children and young person, but what they actually do.

I was very much like you with dd, who was the same age at the time. The local disabilities services dismissed our referral, and the community paediatrician checked dd at school. He concluded that dd was just jealous of her sisters and that was causing get 'bad' behaviour. We self-referred to an early intervention service where dd saw a child psych for a year. She slso concluded dd did not have ASD. We had a three month break from seeing the child psych and she was looking for private therapy groups for us as she said she could no longer help us. During this break, dd then 6yo, began trying to cut herself with anything she could find that was sharp. We were referred to cahms. In our first hour session with cahms, they suspected ASD and this was confirmed by ados 6 months later. I can only suggest to keep pursuing this if you're not happy.

I think now you can ask for a second opinion via referral to a centre of excellence from your gp.

WhoDrewOnTheWall Wed 04-May-16 16:17:22

CYPS are what used to CAHMS.

Thanks for your reply, I'm going to see what psych services are available and will sound out the GP re: a second opinion.

The big issue is that he holds it together at school. He copies whatever the other kids are doing so if they sit, he sits. He is fidgety about it and flaps about but he'll sit. If they run around, he runs around. He contributes to discussions and so on. He sees SALT as his speech isn't very clear on certain sounds and he gets stuck on phrases, like a broken record, he'll be talking and he'll say (for example) "we went to the shop and bought carrots bought carrots bought carrots bought carrots bought carrots..." then he sort of comes back to himself and carries on when he left off. Also his spoken phonic sounds were quite far behind his reading ability. He has handwriting support too as his writing was virtually illegible and gigantic.

CYPS have said that all of the behaviour we flagged is exhibited outside of school which is why they think it is a parenting issue and not ASD.

imip Wed 04-May-16 17:43:17

yes, dd also masks at school. Perfect at school, apparently. Contributes to discussion also, can be very articulate verbally (or talk in a baby voice when v agitated). She has lovely hand writing, very kind and considerate. She is just copying!! Took me years to realise that she actually copies the personality of her best friends.

Closer observation by a psych revealed the true extent of her masking at school, and the clinical psych pointed it out to Senco. If they did not witness this behaviour at school, they were going to do a home observation as an assessment, I think that the extensive notes taken from 20 sessions with the child psych ended up being useful for cahms as from what I have, it all shouts out ASD. For us, cahms were never concerned that the behaviours only presented themselves at home. I'm feeling eternally grateful to our cahms for picking it up when no one Else was able. It's a shame their is not equal cahms expertise across the country.

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