Parent involvement in assessments

The dx of Asd has to come from camhs or paed. If you've got that in writing then education officer's opinion (is that EP? ) is irrelevant.

Excuse me if I'm getting confused but are you asking about getting a diagnosis or appropriate support in school?

The problem is that I have a collection of reports from different people, placing LA swear blind to me there is nothing else, we have no history with the professionals here, the reports are old and there has been progress in some areas.

The biggest sticking point is that there is a community paeds one page letter written to the then GP, which states that his traits no longer merits a formal diagnosis of ASD, this seems to have followed a routine LAC medical, not a formal assessment or diagnostic process. This is dated 6 months after two reports I have which quite clearly state the diagnosis is ASD and dyspraxia. I recognise the child I see in these reports as the little boy who came home. I, and my current GP are mystified as to how the community paed could arrive at this conclusion. Although this letter is not included in Simba's medical records, it was attached to his statement although I only saw it three weeks ago.

My concern is not so much his current school provision but that we have to decide on secondary school this year, if we cannot agree on what his actual diagnosis is, I'm concerned about getting access to the right support at secondary level, and also his entitlements to future services and possibly benefits. I've no doubt that Simba is at the lower, more able end of the spectrum, but I've equally no doubt that his behaviourial traits impact on his ability to function in mainstream life. Current GP is very happy to refer to Camhs for an assessment.

Okay. Then imo the Asd dx is going to be important for when he goes to comp
otherwise god knows where he'll end up. This is why we chased dx and statementing. Without dx his primary need would be deemed to be ebd - no high school ebd units here. We have to demonstrate that his primary need is Asd in order to access the right unit at comp level which is going to mean a change or school in y6. That's all up in the air at the moment.

How do they assess in your area? Here it's multidisciplinary and includes camhs, paeds, salt and ot. Dx then made via panel. One had ados and one didn't.

I sent the same report to camhs and paeds with a less detailed version to ot and salt.

Do watch though that you're not pushed down trauma/attachment route - that's what camhs tried to do with my kids.

I think it might be very helpful for Simba to be reassessed now he is home with you. Now the 'experts' will be getting a true picture of Simba especially with your input. I think for his future and for a true picture of his needs I would go ahead with reassessment. From how you have described Simba I'm sure you can sell an assessment to him on the grounds of how much he's developed. For his move to secondary I would ask for EP involvement and assessment and ask GP to refer to CAMHS and press the LAC/adopted child PPP to be used if necessary. Good luck.

I agree with Esty, I think Simba should have a thorough assessment now he's been living with you for two years. He has probably come along in loads of areas and then other areas will be highlighted where you think he needs more help or support as you are the one who really know him best.

Ironically I have just, finished a very thorough assessment of EDD possibly being on the ASD spectrum. CAMHS are struggling to know what to do with her, so are assessing her for ASD if only to rule it out. I had two seperate sessions with their Autism specialist which was very thorough, massess of questions, asking about behaviours, friendships, schooling etc. Each session was for 2 hours, quite tiring, but very thorough, so she gets a full view of all behaviours.

She is now going to do the Autism tests with DD and will compile a report of her findings at the end to rule it in or out, or where she falls on the spectrum.

From what you've posted over the years Simba definately has ASD, but the testing will show what level and then you have a starting point to go forward and see what help he is likely to need at secondary school. Better to start now while you have the time to get it done, rather than wait until he is in secondary school and could be in the wrong one for his needs.

The only good thing in CAMHS favour is they do know a lot about Autism and ADHD etc, not so good on attachment, but definately cued up on ASD as they see a lot of kids with it daily.

 
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I would go for re-assessment to clear it up once and for all. In fact, I would push for assessment at the Newcomen Centre (London) run by Gillian Biard. Top UK ASD/Aspie specialist running the top UK NHS diagnostic centre. They deal with many second opinions and the waiting lists are actually a lot shorter than many of the local routes (5mths wait to be seen there, 18-24mths locally here).  The assessment is pricey and the referrer picks up the tab, so there may be reluctance to get the referral done.

No one will be able to dispute a diagnosis made there. Their view is that ASD and attachment can run together, one does not exclude the other. Also that there is more than cause of ASD too. Which is rather helpful for our kids.

A local assessment here would take about an hour and half, a good multi disciplinary would take several hours BUT all the kids I know who have had them (mine included) really enjoyed them. They are managed by specialists who want to get the best out of your child and not stress them out. My son is highly anxious but came out laughing clutching a balloon after almost 4 hours!!

Go for it, the assessment shouldn't be arduous for your son at all. Though you will be exhausted

as there seems to be confusion I would go with the assessment not just to help with secondary school but for when he becomes an adult.I made the mistake of not pursing some stuff for my dd ( we had so many assessment for therapy I did not follow up all the ones for diagnosis for some things. and to get a care package in place is a nightmare now she is an adult where as ds2 gets a good care package.
I always now try to think what will help my youngsters in the very long term future as well as the short term future.

Oh is she choosing the non ASD bit to protect the budget??? In which case definitely get him assessed. She sounds like she may be the Placement Officer and they hold the keys to the purse. she may think an ASD diagnosis would change what you want for him, ie more expense.