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 will, thanks. I've read quite a lot about girls with autism and did the free training on the National Autistic Society's website, so I feel I'm getting an understanding.
I bumped into her teacher on Friday and she said she's getting on very well at school, with no tears at all. However, the one thing she did say is that she's extremely slow and almost never finishes her work, and although it's nothing to worry about as she is bright and working beyond expectations, she does need to work on this. I know that further up the school, this will increasingly become a problem. Is this something that girls with ASD experience? At home, she seems to have no concept of time, and it takes her forever to do anything - like getting dressed, so I think it ties in with this. And it can take all day to do her homework with her, and often it ends in tears. I wondered if this was something other parents of children on the spectrum have noticed?

And I'd be so interested to know why?? Is it down to perfectionism possibly?

purple when Ds was at primary he was regularly kept in a lunch to finish work. This was way before we had a diagnosis. At the time I struggled to understand this as he was one of the highest ability pupils in the class. He's always had a bit of a perfectionist streak, although I would say less so now.

Looking back I can see it was more of an executive functioning thing for him. Not always organising his time well. Struggling to plan and having no concept of time. Even now at 15 I often find him staring into space when he's meant to be doing something.

Although Ds is not reaching his real potential at school he still seems to be maintaining his grades at the moment (gcse mocks next week!). Unlike many autistic children Ds has never been assessed by an educational psychologist so I have no idea if his issues are just him or if there is anything else going on.

I would say it's not unusual but definitely keep an eye on it incase it does start to have a negative impact on her work at school.

The email above is perfect.

FWIW the school scored my daughter 3 on that form. 3! I had to fight and fight for them to agree to assess. School said she was fine. Eventually the paediatrician agreed to have her observed at school and she wasn't masking that well at all - school just didn't know anything about how girls present differently. She was diagnosed in June and they also picked up on ADHD which she will be properly assessed for in January.

@purplerain44

Our son used to struggle with the concept of "making mistakes." If he was writing something we would have a complete meltdown if he made a mistake and had to rub it out. He was also incredibly slow and laborious at writing stuff down.

When he went to secondary school they let him use a laptop which was much better as of course things can be changed and there is no visible evidence of errors. He was also much quicker at typing than he was at hand writing. Since then he has always been allowed to use a laptop in all exams too.

Homework used to be unbelievably stressful for us but eventually the school arranged for him go to Homework Club in the lunch hour and he did it all homework at school.

Executive function has been a huge issue for him right the way through school. Paying attention, organizing, planning, and prioritizing, starting tasks and staying focused on them to completion, self-monitoring etc. Being unable to do any of this without support was instrumental in the mainstream FE placement breaking down completely and bringing him very close to a breakdown. It didn't help that they had no real understanding of autism and just expected him to fit in with everyone else either.

Part of his problems with executive function was down to having problems with processing information, so the way mainstream lessons are delivered was too fast for him to take in, so a lot was going over his head. Mainstream teaching is typically done through talking with very little in the way of visual aids.

DS's working memory is also impaired. I only realised this after some very detailed clinical tests were carried out when he 20, and we were fighting for an EHCP for him.

When he went to his next placement, a specialist college for students with autism, organisational skills etc were part of his outcomes he had to work towards. He is now able to organise himself without support. If he has to be at an appointment at 10 o' clock somewhere, he is ready well before time, has looked up the bus times in advance, sets off by himself and arrives on time.

He sometimes had issues when he had a lot of homework last year, but by and large he was able to organise himself and manage it with minimum support. It is truly amazing how far he has come.

I think the reason he has overcome these difficulties was down to having teachers and support staff who understood autism and had all been well trained to work with students with autism, different teaching methods, being taught how to break tasks down into manageable steps, alongside social skills training and speech and language therapy which improved his communication skills and fostered his confidence and self esteem.

As I said previously, I would keep pushing for your daughter. It may also help to keep a diary so you have a log of all the day to day issues as they arise. In your shoes and in view of the masking at school and subsequent behaviour issues at home, I would seriously consider applying for an EHC Needs assessment.

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

It is likely you will have to fight for it as many LAs routinely turn down these requests and then back down when parents appeal, so the process can take a very long time.

It was 71 weeks before our son got his EHCP with the placement he wanted. That was after 2 appeals to the SEND Tribunal and DS being out of education for a year.