School STILL won’t assess for ASD - what can I do??

[Alstac]

DD (10) has been on the referral list for ASD for over a year now. School initially agreed she needed assessing, but now they’ve backtracked and are saying she’s “just sensitive” and that “lots of kids are like this at her age”. Meanwhile she’s barely coping, always on her own at break, crying every day after school, meltdowns at home, won’t go to parties etc. She’s masking all day and then just crashes when she gets home.

GP won’t refer us direct, says it has to go through school. School saying GP has to do it. We’re stuck in the middle while DD gets worse. Teacher basically said she’s doing ok academically so there’s no need for concern?? As if social/emotional stuff doesn’t matter.

Has anyone managed to get a private assessment that wasn’t thousands? We can’t afford 2-3k but I don’t want her like this til secondary. Feels like no one’s listening and I just don’t know what to do anymore.

Any advice appreciated x

just coming back to say thanks again everyone, really appreciate all the support and info – it’s made such a difference reading through

that checklist idea is brill, will definitely do that and break it into the sections, hadn’t thought of putting it like that but makes total sense. i do get emotional and end up forgetting things so writing it all down might help keep me focused.

also good to hear from ppl who’ve been through this, even if it’s taken ages. heartbreaking how common this whole school vs gp loop is. we’re not alone but it doesn’t make it any less frustrating

re diagnosis not being a golden ticket – totally get that. i just want something formal so that school take it seriously and we can get support in place long term. already feel like they think we’re exaggerating because she’s quiet and “polite” in class

not sure about private but will def look into the mini assessments and caudwell more, £300-£500 is still a lot for us but might have to find a way

also didn’t realise play therapy might be an option, will look into that too – anything that might help her cope day to day

next step is getting another gp appt this week and will push again for right to choose. thanks again everyone xx

@Alstac look at the triad of impairment as it lists the traits within 3 categories. Also Nasen did an article on girls and asd called ‘flying under the radar.’

In our area, it’s the GP who has to refer for diagnosis, so I’d definitely go back and put the pressure on there.

Like others have said though, while diagnosis is definitely helpful (particularly in terms of understanding DC and helping them understand themselves), it isn’t a panacea for support. In fact, DS’s diagnosis meeting pretty much went “so yes, he’s autistic. We’ll discharge you now” and then the next battle (to get the support) began.

School should be supporting needs not diagnoses so I’d push for a meeting with the SENCO to explore what DD’s needs are, and what support may be helpful. She won’t get 1-2-1 support without an EHCP, but there’s a lot that schools can do that is basically free: quiet area for break, safe space she can move to in classroom, carefully chosen seating plan, etc etc.

Good luck with it all.

I find that the GP is a lot more receptive if you go to them with the problem rather than what you think is the solution or reason. I don't think it's a good strategy, whatever condition you think you or your child has, to rock up with your own diagnosis and essentially ask for it to be validated.

So take a step back at the next appointment, focus on how she isn't coping, how she is crying everyday and things she struggles with. You don't know for sure that it isn't her hearing or anxiety, for example, just that there's something wrong. Focus on that and you'll find everyone works together more.

It may be worth looking at Autism Detect, as they offer a low-cost initial screening consultation and clear next-step guidance from qualified clinicians.

I find it absolutely ridiculous that referral has to come from the school not the GP. Not only are school staff unable to diagnose this means that parents are not listened to but are blocked from being able to access those able to diagnose. A GP will refer on based on parental concerns but a school can override parental concerns or behaviour out of school if they decide the child is meeting academic expectations or appears fine in school.

Autism is a lifelong condition. School is very time limited over a lifetime but the experience of being undiagnosed and misunderstood in formative years can negatively impact on mental health over a lifetime of someone that always has been and always will be autistic. Lack of referral and investigation blocks support that can be provided by SALT and OT with social skills and sensory regulation etc. These are life skills. Schools only care about resources for the limited period your family member is a pupil of that school. Not how they function for the next 50-60 years.

There is a sad fact that not investigating an issue means that you don’t have to treat it. so blocking investigation means never becoming aware of an issue you are obliged to react to. I ended up with private paediatric, EP, SALT and OT reports. All done by professionals that also work in the NHS.

Agreed mine were dx before 3. School couldn't spot autism in them already dx so God knows how parents are supposed to trust schools to spot it in those without a dx.