School not telling parents their child has suspected autism.

[Biscuitsaretheworkofthedevil]

The SENCO of our primary school has some very apparently thought that my child has been on the autistic spectrum. I was surprised to find they don’t mention this to parents. Is it reasonable for them not to mention this to families?

This was our situation. Ds1 has autism (and a bunch of other stuff) and we rejected the concept entirely because he was our first child, we had no direct experience of any children and he was the youngest in the class (summer baby) and so we brushed it off as 'of course he's behind the other kids in his class- some of them are 11 months older than him'.

The HT took us aside and gently suggested that we pursue an assessment when he was about 4 and I was so horrified and angry and distressed. So it's possibly school specific, but yes she was not the first to suggest it.

So he was assessed and has autism - and adhd - and since then we have added tourettes and dyspraxia. Quite the collection. He's still the best thing that ever happened to us of course and I try and make it my mission to help other parents not be afraid of it. An assessment does not mean a diagnosis. And a diagnosis just means you can learn more to help them. IME it tends to be the dads who are in denial more than the mums after the issue has been suggested.

But we had no clue at all. Nothing to compare him to, you see.

DD2 masked in school - but even if she hadn't - considering the SENCO decided to refuse to believe her diagnosis (via NHS before anyone starts) of dyspraxia, I don't have much faith they'd have done fuck all. Ended up with us moving schools.

I know when I was a teacher we were allowed to raise concerns specifically about X or Y but not to say "I think it's Autism". Quite what a family chose to do about those concerns varied.

As for assessment - I now work in the NHS and our policy is it needs two disciplines from within the MDT who are appropriately trained (ADOS/ADI are what we use) to agree on the diagnosis with evidence from any source we can get evidence from to support this (which is where school contributions would come in).

Erm plenty! The NHS says all sorts of things that it doesn't deliver. Wasn't there a recent advertising campaign about mental health and going to your doctor for help. There is no resource at all bar tablets and we all know this.
The reality is quite different to the perception or the publicity.

My son is Autistic/ ADHD. GP referred me to parenting classes 🤦‍♀️. SENCO is overloaded and there's something wrong with her approach which is very much ' best not to get a diagnosis. ' They blocked my access to an NHS assessment. It was as clear as day in the private assessment. Fortunately we have the diagnosis now.

People who are not at the mercy of these systems are absolutely clueless to the reality. It's the same with hospitals right now. You want to be at their mercy and spend a few weeks in there and you will see how it really is.

It is I accept still a postcode lottery where some are much more supportive than others.

Gaslighting is however the most used approach right now across the board based on every experience I read about and my own.

I had to do a PALs complaint for one of my dc’s autism diagnosis and re their MH treatment not happening.I did a PALs complaint which was upheld and got both. About to do it again for treatment for another child. PALs can be used in an advisory role too.

@Rawfruit that is such a positive thing to hear. I have to admit I have always found PALS useless. If you are prepared to and have the energy to fight then you can get somewhere then!

I'm really glad that happened and I imagine felt like a big achievement. Kudos to you for not giving up 🙏

I couldn't find the strength to fight in our case. I was also really worried the NHS would mess it up and miss his obvious Autism/ ADHD.

Hopefully your post will inspire others in this position to push back!

Exactly! I made a big mistake not doing this with my other child.

I would be more than happy for our local GPs to do adhd/ASD referrals for diagnosis. But they won't. So, as SENCO, I have to do them instead. If I refused because a GP " should", where would that leave my parents?
As an aside, it wasn't schools who decided they were best placed to do referrals, the local health authority decided GPs were " too busy" to make referrals so told schools they had to instead!

People cannot get a referral as school are often gatekeepers. Also it takes two-three years to get to PALS.

Whoops sorry meant CAMHs! And you didn’t say CAMHs

I’m sorry you all had to go through this. What a nightmare for you all.

@Rawfruit ah CAMHS! Because our school SENCO is so appalling, the school provided no supporting info for us so there was no way I would have accessed the assessment.
It's awful because the teachers knew. When we had a private assessment I paid for it to include an in school assessment and observation. They picked up loads of obvious things and one TA was very open and honest about struggles.
Yet the SENCO said no problem a few months before all this and based on them lying, we didn't get an assessment. I believe in the same situation it would happen again because it would be just me.
Dad was in denial unfortunately.

Son is Autistic/ADHD and they also believe tourettes. With all that there was no one supporting me.

Yes I feel there is not a willingness now to accept that your child needs help. The words “doesn’t meet the threshold” are used a lot and referrals now bounce back. Or “a letter was sent out and you needed to write back and say you still wanted to be in the waiting list and we didn’t hear from you so Little Timmy is no longer on the list”. The list you have been on for two years and the invisible letter.

@Biscuitsaretheworkofthedevil it's all part of the gaslighting and parental blame which they will absolutely employ in order to manage the workload. They also don't even have the provision there when kids do get diagnosed. I didn't have the strength for a fight ref EHCP. I knew I'd be fighting a very long time with the ridiculous he's absolutely fine nonsense again.

Luckily his current teacher is very understanding. He's about to start secondary school which I am obviously concerned about. I'm sure this attendance crap is a response to the knowledge that schools are failing kids. So instead we will blame you and punish you.

Hope so much things change under a new Government.

Many parents think it's schools that diagnose autism. They don't, and never have. Neither do they diagnose asthma or cerebral palsy.

If you've had suspicions about your child's development and have sat around drumming your fingers waiting for a teacher or SENCO to kickstart some sort of diagnosis for your child then you are failing them. Of course, some parents have absolutely no idea, and some children mask very very well, so it isn't always apparent. Those parents aren't failing their children.

This isn't true.

It’s true in my area. Otherwise the 800 odd parents in my local group have misunderstood or are telling me fibs.

That’s a bit of an aggressive remark to allege people are “drumming their fingers” and “you are failing them”. There’s no need for that.

But why would “authorities” stipulate only schools. It doesn’t make sense. Often CAMHS and parents are better placed to refer. Everybody should know by now that girls can present differently and mask in schools.

I can believe some parents have gone to their gp and been told they need more evidence from school or punt it back to school if it’s school based behaviour. But authorities saying it can only go through school doesn’t make sense.

But it's what happens! We are not lying and I'm not sure why you think we would. In my area GPs cannot refer. Schools have to.

So CAMHS don’t?

What area is that?

A large one!

What area?

It isn't true @Rawfruit in any area. This is my area of study and expertise and local authorities don't have the power to do this.

It would be nuts if they did.