Autism assessment for 9 year old daughter. Not sure where to start

[BeccaBean]

I’ve wondered if my 9 year old daughter (just finishing Y4 at school) might be autistic for many years but because she currently does not need any support at school, I decided on a wait and see approach to see how things developed as several of the autistic traits she has are relatively common in younger children. I feel like the traits are now becoming more noticeable (at home) and I would really like her to be assessed before she starts secondary school. She is very bright and doing really well at primary school and I don’t believe that school have picked up on this (working at greater depth, has friends, well behaved). However, I worry about what will happen in secondary if she is autistic and is not supported.

I now realise the problem with putting off assessment is that with the NHS it could take years, and I am not sure how to find a private assessment that will be accepted at state secondary. I really don’t believe that school will report any autistic traits (although I recently volunteered on a school trip and saw her rocking gently while sitting on the mat listening to a presenter and noticed that no other children in the class were doing this). Will it be more difficult to get a referral for assessment if school haven’t noticed any traits? I also think that if I take her to the GP, the GP won’t spot anything in a 5 minute discussion as she’ll sit there quietly and well behaved.

For background, she has many autistic traits but doesn’t display them all every day (some days none of them at all). These include stimming (gently rocking/constantly moving legs) when reading/concentrating/excited); hyperfocus (can read/draw/colour for hours and has been like this since young child); strong attachment to teddies/younger child toys and generally acts less maturely than her friends; collects everything – stones, shells, badges, bottle tops – and spends ages re-arranging; constantly asking everyone what their “favourite” everything is (and then repeats later in the day, following day); won’t be rushed at anything; very imaginative. Recently I’ve noticed her posture is getting poor (hates sport and reads in funny positions). She has never struggled to make friends but I’ve noticed recently that she sometimes seems to annoy her friends with her babyish-like questions/conversation – they seem to be maturing while she does so at a slower pace. She is extremely calm and doesn't have meltdowns (and rarely had them even as a toddler).

Can anyone suggest how I move forward to get her assessed by a professional whose findings will be accepted by school as I’m not sure where to start? Thanks

As a teacher, I can report that we are heading swiftly towards more than half of the children in a class having ND. And that isn’t a bad thing, but it’s becoming clear that it’s far more prevalent than the current 10%. Girls mask, so you noticed your dd rocking, another child would have been nibbling their nails, another twiddling their hair etc all stims. If I were you I would get the ball rolling on pursuing this through the NHS as it will take years, due to the numbers coming through now who have realised they and their children are ND, at a very highly functioning level, but nevertheless clearly not NT. I think government will have to bring in some rules soon, as it isn’t worth diagnosing half the population with ND but as a society we do need to recognise how many people have been suffering (too dramatic a word) in silence, because they can function.

Schools can’t refuse to accept independent assessments just because they are independent. Support in school is based on needs rather than diagnosis.

The validity of any assessment and potential diagnosis is less likely to be questioned if the assessment follows the NICE guidelines &/or you use a HCP who works/worked for the NHS.

Start by speaking to the class teacher and SENCO. Raise all the things you have mentioned in your post.

A good service will understand schools don’t always spot the signs. They will also understand masking. Sometimes schools are reluctant to refer unless they see difficulties, but if you are going to look privately, that doesn’t matter. You could also look at Right to Choose. Depending on your income, you could also look at Caudwell Children’s assessments.