School and SENCO think DS has ASD but consultant paed doesn't.

[MandMand]

Bit of background - my son is just finishing year one and has just turned 6. He's been flagged up as having possible ASD traits since he was 2, and has been seen by the community consultant paedatrician every 6 months, who has been adopting a "wait and see" approach.

However, after our last appointment 5 months ago, he wrote that he thought it was "unlikely" that DS would turn out to have ASD, and if all was well at our next appointment (which is coming up in a few weeks), he would discharge him.

However, since soon after starting school, he's been on an IEP for some of his behavioural issues, which his teachers and the school SENCO feel are clear signs of ASD. They have a number of strategies in place to help him, which seem to be working well, and DS is happy at school and coping fine at the moment.

I had a meeting with his teacher today to discuss his transition to year 2 and his IEP, and she told me that she and the SENCO still think that he is probably on the spectrum. It seems that the strategies which they use for him are the same things they would usually do for children with a confirmed ASD diagnosis, and its certainly true that they do seem to really help him.

Given that school are so supportive and helpful without a diagnosis in place, and that he's happy and doing fine at the moment, is it worth me trying to ask the consultant for a formal ASD assessment?

I suppose I'm worried that if we get discharged by the paed now, but DS starts to have more problems in the future, we would be back to square one. Any advice? Thanks.

Pah! Sounds like the crap I had to put up with for years. Put a formal request in writing for a multi-disciplinary assessment by an expert neurodevelopmental pead to take place ASAP. The NAS will have a list of local centres of excellence. Copy it to head of SEN for your LA, your HT & SENCO & GP + the pead's boss.

Crap quotes from "professionals" over the years in the land of bochead to incentivise you to write that stern letter:-

"Give him double cream" (consultant pead at an appt to discuss my son's failure to thrive due to dairy intolerance).

"He just needs a father figure" (That'll be the diagnosed AS one then will it? cahms)

"A label won't help him learn" (SEN officer after permanent school exclusion at 6)

"He's too intelligent to be ASD" (EP)

"It's unprecendented for a child without a diagnosis to get this type of support" (SEN officer at Tribunal).

Age 2-6 and the traits are still there? This is not a phase, it's 2/3 of the child's life on earth to date. The pead isn't waiting for the 2nd coming - he's either fobbing you off, or incompetent.

Seconding what Boc said - definitely push for an ASD assessment.

Paeds are just GPs for children - jack of all trades and not always well-versed in ASDs.

Thanks for this. Bochead, its interesting that you think that the paed is fobbing me off - the school SENCO has actually said exactly the same thing.

I suppose I've wanted so much to bury my head in the sand and believe that he isn't ASD that I've ignored what the school (and before that the Health Visitor, and the pre-school, and the SALT people ...) have been trying to tell me all along. Arghhh.

He may not be ASD - many different conditions/combinations thereof can result in similar behavioral issues. Lots of conditions can overlap like Olympic rings.

e.g

Sensory processsing disorder
APD
social communication disorder
dyspraxia
adhd

You just won't know until he has had a proper neurodevelopmental assessment, inc ADOS, preferably by a multi-disciplinary team. 4 years is plenty "reasonable" to wait, now you need action. If this pead can't make the call then he needs to get off the pot and refer to someone who can. end of.

My perspective is a little scewed though as DS only got his diagnosis a month off his 8th birthday, and after years of pure grief.