Neurologist: no evidence that earlier intervention is more productive

[oodlesofdoodles]

I'm making a complaint against our NHS health board (trust) for failing to monitor my vulnerable child's development. They now want to dx him as ASD. I've just had a first letter on the matter from DS's neurologist. Here's a quote:

"Although there is good evidence that psycho-educational intervention is better for children's outcome than no intervention, there is no concrete evidence that intensity of intervention or earlier onset of intervention is more productive. However it's fair to say that there is no evidence either way...."

Hang on, is that right? Is there no concerete evidence that earlier intervention is more productive? Not just in ASD, but other aspects of child development.

(Background: DS was very ill as a baby, spent several months in intensive care, missed out on months of normal interaction and development.)

did you get slt follow-up? we left hospital with spec feeding slt advice, which continued. (dd2 also ng fed) how old was he when he started to feed orally? should add she had other issues wrt muscle tone - tremors etc, so we were also discharged with physio in tow. we've never had any follow-up re potential as/asd though. i suspect if they had ruled out cp then we would be in the same position as you. but it was pretty obvious she had some fairly major issues.

the ng thing is interesting. dd2 had no suck or gag/ swallow so was dependent on tube feeding and suction to clear airway. we were also treated as if this was a bit of an anomaly - medical mystery type of thing. (along with 'well, she looks like an HIE baby, but there's no evidence'. of course not. because evidence might mean culpability once you've already agreed care was sub-standard. )

(not seen any info at all on feeding tubes and links to as btw. (might dig around and see if there are reports linking feeding tubes to learning disabilities) and totally agree with the whole mri issue. some kids with clear mris have v complex disabilities, and those with fairly catastrophic mri can have minor or no obvious issues. brains are a funny old game)

i think as i said earlier i'd be discussing specifics with families of more than one as child, where there is a clear (as clear as there can be) genetic link - i think quite a lot of families even in this position have problems getting early dx? (or monitoring? it would be interesting to know what monitoring and early year assessments are in place for families where there is a strong genetic predisposition)

i think it's clear that the as dx system leaves a lot to be desired - you only have to look at the number of threads on here asking how to get a dx on their second or third attempt.

good luck x