DD7 - school questionnaire doesn't reach threshold for ASD referral

[purplerain44]

hi there, I've written on here a few times about my DD7 (yr2) who is under CAMHs for anxiety (last year this culminated in OCD symptoms, where she stopped eating for fear of germs and for the whole of reception and yr 1 cried every day at school - going in/ in the playground/ in assembly etc). She finally got good support with the pastoral lead and from January she went in with my DD every morning, took her in every lunch time etc. As of this year, she now finally goes in to school without a struggle, and from what I can see, has a "normal" day at school. She has a tight group of a couple of friends (very intense, but they get on well), which has helped. We still struggle with her a lot at home where she has meltdowns, and we also can’t get her to sleep much before 10.30 most nights and one of us has to be with her as she is too scared to be on her own. We then can't get her up in the morning and getting her ready is a nightmare.

The therapist at CAMHS did an ASD questionnaire with us a few months ago and DD passed the threshold for referral (she is very rigid and black and white in her thinking/ misunderstands easily/ lines up toys and makes patterns with them rather than playing with them/ some smells make her panic etc.). However, in the last few weeks, the school questionnaire has also come back (filled out by her teacher from last year who saw her at her worst, but consistently refused to see her issues as a problem and informed us that when she cried, she just ignored her until she stopped!) as not meeting the threshold for referral. T he therapist we have been seeing about it said that it’s not such a bad thing as we don’t want to “label” her with a diagnosis as it’s likely she’ll be borderline/ mildly on the spectrum (if there is such a thing), so we should just do the best we can to help her fulfil her potential.

I’m partly in agreement with this, but something still niggles me and I think it’s because, really, i would like any differences she has to be known and acknowledged. A big reason for this is her big brother (10), gets really cross with her and us, and says we spend too much with her (she’s so needy at home) and although he knows she has anxiety, he can't really understand why her behaviour is so challenging. Surely, this is a recipe for future resentment? Also, I also have similar traits to her and have struggled all my life with feeling “different” resulting in anxiety, depression and extremely low self-esteem. What if she feels something similar? what if next year, school gets challenging again, because there is a class-mix up and then there’s secondary school to think about.

I can’t change the school questionnaire, or force them to refer her for assessment - and we can’t afford to do it privately, so for the time being, I think I need to go with it. But I wondered if anyone had a similar experience and could share and if I really should be doing something different.

Thanks.

I would speak to therapist and say as they are the experts and they've seen some reported traits they need to assess and form their own opinion. Not refuse to assess on the basis of what someone who no longer teaches dd and is an teacher says.

purple Ds's school questionnaire did not meet the threshold for ASD either. The difference in scores between ours and the schools was huge. The paediatrician was happy to carry on with assessment. Ds now has a diagnosis of ASD and school agree that he is obviously autistic!

Thanks, this is really helpful to know - I appreciate the responses. The therapist knows we want to go ahead with the referral, but indicated that she won't do it unless the school report reaches the threshold. How can I possibly persuade her if that's what their policy is? Also, I've seen the term "autistic traits" on this board and the therapist also mentioned it - is there a difference between being diagnosed with ASD and having autistic traits? is that a diagnosis in itself? I thought you either were on the spectrum, or you weren't?

None of DS1 or DS2's school questionnaires ever reached a threshold but ours did and the qualified NHS professionals who met with them diagnosed them anyway based on their observations. It was a mix of politics (trying to make SN kids go away) and masking at school.

purple I think many people can have autistic traits but to get a diagnosis you need to fulfil the specific criteria. Ds's paediatrician said she was willing to go ahead with the assessment because his difficulties were having a significant impact on his life.

It does seem a really strict policy by camhs in your area. Ds's school gave his questionnaire to his head of year who doesn't even know his surname let alone anything about him. I can understand your frustration, is there any chance the school would consider filling in another form supporting your concerns?

We are now trying to get post diagnosis support as Ds's mental health is really poor. That seems another impossible fight! The NHS certainly don't make it easy for us to access assessments or support for our children.

Hope you manage to get an assessment soon.

yes, I think because at the moment, she's OK at school, it can almost be brushed under the carpet. But she literally imploded last year - and it's amazing she's come back from it. But I feel it's my responsibility to understand her and help her to understand herself if this happens again.
Similar to your experience, the questionnaire was filled in by a maternity cover SENco who at first filled it in wrong anyway and had to be sent back to be filled in correctly. And as mentioned, helped by a teacher who when she was her class teacher, thought it was best to ignore her crying and didn't even think to tell us that she literally ate nothing for lunch for an entire term.
I hope your DS accesses some support soon.

Purple you need to have those points gas in writing to the therapist. (Email if possible)

Eg

Dear therapist,

You e recently received forms from both Dd school and I for a referral of AsD assessment.
You've stated what we wrote she clearly reaches threshold for assessment but will not proceed as the school questionnaire didn't meet your thresholds.
The school questionnaire was completed by a cover senco who does not know my DD and an old teacher. It worth noting that this teacher - during the time she taught DD stated that - I jut leave her to cry as she stops eventually and only told us after a whole term that DD hadn't touched lunch or eaten at school for the entire time.
Does this sound like a child who is happy and settled into school and very different from the one we described at home?

Please inform me in writing what your decision will be after you've considered our request for second opinion.

Please also refer us to the law and guidance by nice and nhs for thresholds for referral if you decline to reconsider.

thanks for this, it sounds very reasonable when written down in black and white. I wonder if because she's now doing ok at school if this is also playing a part in the decision.

But she's not doing ok at school if she's simply masking. She's holding it together. The right support means she isn't doing that and isn't building up poor MH for a meltdown later.

It's not about how you cope - but the overall and long term effects of the making/coping.

Thank you - I understand what you're saying and I think that's exactly where my persistent niggle is coming from.
how do you know if a child is masking?

Because they explode when they get home. Their behaviour is very obviously different in an environment and with people they know and are relaxed with. Girls especially are very socially aware and can copy accepted behaviours. But imagine playing a character 24/7?

I'd look at NAS website on masking and autism in girls and use what they say and compare it against your dd as 'evidence'.

Itsgetting that email wording is amazing. I want you to write my emails for me!

Op I also agree with pp, you must push ahead and get the assessment, dx and support your DD needs. Listen to your niggle, don't sit on it now and possibly regret it in a few years time. Goodness only knows, the waitinglusts could get even longer in coming years. Get your DD into the queue.

Yes OP you need to push for assessment now.I know a girl who was not diagnosed until she was 15 and then only after having a complete nervous breakdown. After that she was in and out of education for years until she finally got an EHCP and a suitable educational placement when she was 19.

Ellie Ds is 15 and you are right this late diagnosis has caused so many issues including significant concerns around his mental health.

A school questionnaire is not a substitute for a diagnostic test! Remind them of that!

A similar battle here to get dd11 diagnosed 4 years ago. It was easier getting dd7 diagnosed 2 years ago. Go with your gut, any failure to ‘label’ is potentially failing the child. Despite the intention of the law. Schools will be rarely helpful without a diagnosis.

Thanks for your responses and sharing your experiences. I have already mentioned the cost to her mental health, particularly once she reaches adolescence (so far, transitioning through developmental stage has been traumatic for my DD) to the therapist but she reiterated how a label/ diagnosis wouldn’t change this but the way we support and “scaffold” her would. For those with DC struggling at secondary school/ puberty, what were the red flags, if any, when they were younger? I sense the therapist think I’m being a bit dramatic and catastrophising her future which of course I might be!

*each developmental stage

And I’m also very sorry for what your DC have had to go through.

Our son was diagnosed at 7 even though we had been raising concerns since he was 3. Prior to this one teacher in particular labelled him "naughty"/"awkward"/ "lazy"/ (whatever adjective she felt like ) and regularly shouted at him. Our son never forgot that teacher and what she did to him and it had to be dealt with years later in therapy.

Even after he was diagnosed there were still issues.He used to hold it all in at school, and then all hell broke loose when he got home. I now realise this was because he didn't have enough support or the right level of support at school, which is probably what's happening with your daughter.

When he went to secondary school, where they were much more clued up on autism, they put in virtually full time 1:1 support, put him in small withdrawal groups for Maths and English, did social skills work with him and provided a safe quiet space for him to go to at lunch time. He settled really well very quickly and the meltdowns at home stopped.

Ellie that sounds amazing support at your son's school. I can see why my Ds has fallen apart in the secondary environment, unfortunately it's a bit too late to change much for him now.

@Punxsutawney it's not too late for your son.

Our son left school at 16 and went to the local FE college. The first year was OK, largely because of the good transition the school had put into place. His final year was a complete disaster. He didn't have enough support, the tutors just expected him to fit in with everyone else and he ended up so stressed out and unhappy, we had to have him assessed by a psychiatrist. He was diagnosed with an Anxiety disorder and we we were told that those with autism are at much higher risk of mental ill health than the general population.

We were advised to apply for an EHC Needs assessment.

We had a huge battle with the LA, DS was out of education for a year and at one point having therapy three times a week, we had to appeal to the SEND tribunal three times, but he finally got his EHCP and went to a residential college for students with autism for three years, when he was 21.

It was the best thing that ever happened to him.Not only did he gain academic qualifications, he also learnt independent living skills, to travel independently, improved his social skills and did work experience involving the public. He achieved far more than we ever thought possible because he was in the right environment and had the right support.

Today he is a happy confident articulate young man and the anxiety that was once so obvious is hardly noticeable as he has learned to manage it so well.

In your case I would apply for an EHC needs assessment and be prepared to fight.

Information here:

www.ipsea.org.uk/ehc-needs-assessments

Ellie wow, you must be so proud of all his achievements. We are encouraging Ds to move to a smaller sixth form and the head says they don't see any issues with Ds going there and are used to supporting autistic students. Ds is at an all boys state selective school. It's an incredibly overwhelming and harsh environment. Although he has the ability he is nowhere near meeting his potential. Support for him has been lacking and we have had to fight for the tiny bit he gets now.

Ds is also very low. We feel that his low mood is tipping over into depression. I asked the paediatrician at his diagnosis appointment in Sept and she told me there is no help available. Such a shame seeing him so negative and unhappy about his whole life.

Hearing a positive outcome like your son's Ellie is great though. Hopefully one day things will work out well for Ds too.

purple Ds did have lots of indicators for autism. He was late to talk and had speech therapy for a year at 2. His interaction and communication from a young age with us and others was poor. He had rigid behaviour patterns and sensory issues too. He did cope just about until secondary and puberty and then it went wrong. Looking back now we and his schools should have pursued a diagnosis earlier. So do push of you think your Dd needs it. Asd diagnosis and the teenage years are not a good mix! Remember too that autistic girls can present differently, the school might not be aware of that.

That is amazing @Ellie56 and goes to show how that consistent support can be life-changing for the children and their families. @Punxsutawney I hope that your son will also get the support he needs, I agree, it's definitely not too late.
My DD hasn't had any of the typical ASD language challenges - in fact, her challenges are really very subtle and easily mistaken for "dramatic", "oversensitive" and also in some people's eyes perhaps "precocious" - although her behaviour is now pretty much "normal" at school. Other people (professionals at the school/ close friends) have mostly been dismissive when I mention my thoughts to them about her- which also makes me question myself. But to ignore her challenges I worry may be doing her a disservice.

Keep pushing @purplerain44.Listen to your instincts. You know something's not quite right and if you don't fight for her nobody else will. It won't be easy and it will take a long time. It took us nearly five years to get a diagnosis.

Girls with autism can present as being neurotypical. I have met girl students at DS's college who you would never have thought were autistic, but obviously were as they wouldn't have been there otherwise. (Part of the admission criteria is a diagnosis of autism/ASC). Some of them were very able and were going on to university.

We were fobbed off and told there was nothing wrong with our son many times. One teacher said he was just naughty /awkward/rude/lazy etc. One psychologist said he was definitely not autistic on the basis of one hour's observation.
Well meaning friends and family said, "he'll be all right/he's fine/he'll grow out of it."
He's only all right and fine now because we didn't listen to any of them.

Read up everything you can find about how autism in girls manifests itself and keep pushing. Good luck. 🍀