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

Look into right to choose. The GP has to refer you to a right to choose provider.

School didn't pick up that our dd had possible ASD, we went via GP no problem.

Have you met with the SENCO? How is she on a referral list if she hasn't been referred?

There are more possibilities out there than ASD.

most referrals come from either GP or SENCo and the pathway is long.
https://www.nhs.uk/conditions/autism/getting-diagnosed/assessments/

if the GP won’t refer and school are also saying that they are not sure it is ASD it’s worth considering other possibilities.

asd usually comes with a side order of anxiety but there are also stand alone anxiety diagnoses such as GAD (generalised anxiety disorder) and others.

have you talked to your child about what is going on and how they experience the world? What do they say about social and emotional situations?

autism diagnoses don’t really get you additional support as such, so if she does go through the process and get a diagnosis you will still need to look at putting stuff in place (like social stories and teaching her to recognise emotions) yourself.

Doctors diagnose not schools. There’s also many other conditions.

my dd was diagnosed young at 2, nothing to do with school.

We didn't need school to refer for DS, but it does vary, area to area. GP may just be fobbing you off though, could you try a different GP? Teachers are in no way qualified to diagnose so it makes no sense that they have to refer, even SENCOs at Primary are often clueless.

School are being assholes, DS is very bright that doesn't mean he's not autistic (his school had to do a report as part of assessment and made him sound like the perfect child! Paediatrician diagnosed him in 45 minutes and said it was obvious and that she didn't know how he's got to 11 without being picked up).

We got sent to the gp to the school to the gp all were a bit useless no one seemed to know how to start the whole process which is bonkers. So we are doing right to choose.

For an independent assessment that isn't thousands, you can look at Caudwell Children's assessments (need your GP to make the referral) or contact the charity Action for Neurodiversity.

thanks all. will look into right to choose, never heard of it before tbh so v helpful. feels like everyone’s passing the buck and dd stuck in the middle.

yes have met with senco but she’s very much in the “she’s just anxious” camp and keeps saying “she’s not disruptive” like that’s the main thing?? i said about masking and she kind of shrugged. no proper support in place either just told us to try a worry journal

she is on “monitoring” list apparently but no actual referral done yet which is so frustrating. just wish someone would listen to us

dd says school is “too loud” and that she never knows what the other girls want from her, she thinks they’re laughing at her but isn’t sure. she said her brain feels “full and itchy” which broke my heart.

will def try gp again and ask for diff one if needed. also thank you for charity recs will look them up tonight x

I’m so sorry OP. My DD11 was referred in y5 by school with some similar traits but less isolation and anguish than you describe. The senco had first agreed she was anxious and/or masking back in y3. I think it did help us that she stopped achieving (where she should be) academically in y4. She’s now y6 and doing much better in every way but still on the waitlist - she should finally get seen early next year.

In the meantime, the autism service asked school to refer her to CAMHS for anxiety and I’ve done a couple of courses (one group parenting course re ADHD traits even though they refuse to assess her; one onetoone course re strategies around anxiety). I recommend trying to get on these if you can because while we already used a lot of the strategies I think it has helped with her anxiety.

Best of luck to you.

Autism Assessment by Caudwell Children is £500 is that more doable? Option to pay in installments if needed Autism Assessments | Parent and Carer Guide | Caudwell Children

Could you try a different GP? The right to choose pathway still needs a GP to sign the forms.

DD (very recently) saw a GP who didn’t know what masking was - I find that both deeply concerning and incredibly telling.

The area we live in you need a statement from the child’s teacher, SENCo support of the referral plus parental consent or the referral will not be made. All 3 have to be present. I went to the GP initially, who said they would support the referral but it had to be made through the school. This may be because they were already at school when we started the process.

I would do your own research to support why you think the referral needs to be made and then ask for an appointment with their teacher or the SENCo. Keep pushing.

Edited to add that the school did go ahead for us, it wasn’t a fight but then behaviour at school was problematic and it went in their favour to get the ball rolling. And you don’t need a diagnosis for reasonable adjustments to be made, research what you think would help your child and ask for it!

Can you afford private? In the area I live in the waiting time for assessment from time of referral is now in excess of 3 years.

schools do put in place support for children with social and emotional needs but most support is delivered through the health service.

if your child is very anxious then it’s worth gathering evidence to that effect and asking the GP for whatever support is available in your area. This may be play therapy or possibly CBT depending on her age.
they can almost certainly recommend a course on parenting anxious children as well.

the national autistic society also have parent euppprt groups in various parts of the country and you do not need a diagnosis for your child to attend them.

thank you all so much. been reading through replies and crying a bit tbh – just feels like finally people get it

dd sounds v similar to some of yours, esp re masking and falling apart at home. school don’t see the full picture and i don’t think they want to either. she’s still doing well in class which seems to be the only thing they care about.

will def look into caudwell children, 500 is a lot but might be doable in instalments. feels awful having to put a price on getting your kid help but here we are.

have emailed school asking for a proper meeting with senco again and will try GP once more this week and mention right to choose and masking etc.

also thank you for reminding me about NAS, didn’t know you could go to support groups without diagnosis. will see if there’s one near us.

feels neverending but hearing from you lot really helped tonight x

I paid for a private mini assesment. £300 it then said my dd was scoring positive for adhd in many areas and also showing signs of asd. It was basically like a ‘lite’ version of a full assessment. It was that that finally made the school agree to refer to CAMHS after 15 months of asking.

We had this during primary, once he got to secondary, within months they had done their assessment which was sent to GP, long wait but finally we got the ASD confirmed.
For years the primary school refused to see it as he was masking there and letting it all out at home.
I really hope you get the support you need. It's heartbreaking to see your child so unhappy, I really feel for you x

"feels awful having to put a price on getting your kid help"

@Alstac Getting a diagnosis is not a golden ticket for getting help. You can help her for free, using all the resources available online and in books.

This is rubbish. I used to be a senco. We are coordinators with training in leadership of SEND provision, not actual experts in conditions. We are not placed to make that judgement. I always erred on the side of caution if a parent suspected it and would give them a checklist to help me complete the referral. Could you put down your concerns in writing using the checklist?

Don’t put all your eggs in one basket. What if she doesn’t get given a diagnosis, like my DD after a five year wait. Even if she does, what’s going to change? What would the diagnosis give her and why can’t those reasonable adjustments be made now by school? Why don’t you try play therapy for her anxiety?

Hi
I am a SENCO in a primary school. Firstly I meet the family and the teacher to gather evidence of why they think a CAMHS referral should be made for assessment. If there is enough evidence I have no problem doing a referral. If you just make a referral without investigating it first it will often come back saying that the student has not met the threshold for assessment. I spoke to our CAMHS provider last week and there waiting list for assessment is just short of 3 years. However if it is suspected then we create a SEN plan to give the student support in the meantime.

We went down a private paediatrician route as the wait on NHS would have been two years.

This back and forth with school and GP is so common. The primary school tried quite hard to put me off and then I pushed for it in y6.

GP said they couldn't do it because they don't know my child. The reason school do it, at least where I live, is because they have a lengthy form to fill in and they know the child and can observe behaviours.

School are not diagnosing. But as with parents, they may have cause to suspect.

Once the referral was in then the whole process was all positive for us. It didn't take anywhere near as long as I was told. The speech and language therapist went to school to observe. Her report was so insightful. I think perhaps someone else went to school to meet DS. And we had a video call (it was in 2020) with a doctor who spoke at length to me and ds. I had a very long form to fill in to start the process. I think school did too.

The questions in themselves were quite fascinating. Asked about my pregnancy and his birth and all sorts.

Just keep pushing is my advice. My feeling was that school dragged their heels because it's a load of work for them. The senco never even met me despite me requesting meetings either.

Senco at high school, fortunately, is fantastic and I am so sorry glad we got his diagnosis. He's grown up accepting himself and being positive about autism. It's difficult too of course but it's helps us communicate around what he's feeling and needing.

I agree about going for Right to Choose. I'm a SEND assistant at a primary school and while we're happy to do referrals to the normal NHS pathway the waiting list is approx 4-5 years where we are :-( So we're signposting quite a lot of our parents to the GP to go via Right to Choose which is quicker.

When you meet with the SENCO and/or GP, one thing I found helpful was writing down all my concerns beforehand. Firstly, so I didn't have to list all my concerns in front of my son as he was sitting in the room - I didn't want him to feel I was criticising him. And secondly, so I didn't forget anything as I get way too emotional in those situations and then beat myself up afterwards. I listed my concerns under different headings which form the diagnostic criteria for autism so:

• Social communication & interaction
• Repetitive & restricted behaviour
• Sensory issues
• Intense interests

It really helped me talking to the GP and then during the actual assessment as I had lots of examples I could give. Hope you get somewhere.