School report not reaching threshold for ASD assessment

[purplerain44]

My DD7 has been struggling with intense anxiety at school for the last 2 years (reception & year 1) She developed OCD symptoms last Christmas and stopped eating, so was referred to CAMHs, where she got an appointment within 6 weeks. Since then, she has had permanent 1-1 support from a member of staff to take her in to school everyday and she was going to see her every lunch time as she couldn't be in the playground without crying. We've had good support from CAMHs and the questionnaire we did in May showed that she reached the threshold for ASD assessment. There have been many other signals that suggest she may have HF ASD (she lines up toys, rarely playing with them, often misunderstands social interactions, although is very sociable, perfectionist, finds transitions hard and is extremely sensitive to smell and taste).

This year at school however, she seems to have turned a corner. She has a very lovely teacher (who she knows very well) and goes in without support, never cries anymore, and seems very happy at school. At home, things have improved a bit too although sleeping is still a huge issue as are social misunderstandings. Our most recent appointment at CAMHs showed that the questionnaire the school has filled in this term (probably with her current teacher) shows she is below the threshold for assessment, so it is likely she won't go for assessment. The therapist said if she was assessed, it is likely she would be diagnosed with borderline ASD, so she thinks better not to label anyway.

I was wondering what you all thought about this. I suspect I have autistic traits too - my DD really really reminds me of myself at her age - and have felt pretty lonely and different from others for most of my life, having had many battles with anxiety, depression, paranoia and exhaustion from the stress - only really coming to like and accept myself in the last couple of years. Now I wonder less why my face hurts from smiling so much when I'm in a strange social situation - I'm simply uncomfortable and really don't like it. I'd hate her to be like me and feel so separate. But maybe they're right - and being borderline, it's better not go any further with this.

The therapist has asked the school for a more detailed report and I think the same thing will come out - she is OK at the moment, and has come through her anxiety etc. But it was so intense for a couple of years - can't it rear up again? wouldn't it be better to have something to lean on if this happens, something I can use to explain her behaviour/ meltdowns/ friendship misunderstandings? Or perhaps there's nothing I can do. If the school report doesn't reach the threshold, they won't refer her for assessment anyway.

I would love some thoughts, or perhaps previous experience of this as I just want to do the right thing by my daughter.
Thanks!

My very anxious DS1 was diagnosed with ASD when he was 5. He just cried, rocked and followed a TA around for the first couple of years of school.

School told us at the time of his diagnosis that it would not really affect the support and interventions he receives at school.

My boy is now 10 and is in the last year of primary school. He has found school easier as time has gone on. Some teachers have suited him better than others. The thing that has helped him the most, is having kind, endlessly patient teachers and TAs who are happy to answer his questions and tell him exactly what is happening each day. For DS1 it is the people and their treatment of him that has made the most difference.

I do not know what secondary school will bring. I am crossing my fingers that the increased structure, strict time tables, increased opportunities to make new friends and extra subjects to learn about suit him.

I hope that everything continues to improve for your DD. She sounds lovely.

purple Ds has recently been diagnosed with autism. He was referred in July last year and the forms sent from the hospital were given to his head of year, who didn't know him at all. When we went for the initial appointment the paediatrician showed me the discrepancies between the school's forms and ours. She did say it wasn't unusual.

She was still happy to go forward with the assessment. It took over a year and Ds began to struggle and not cope very well at school. The school did actually write again to the paediatrician in the middle of this year to express their concerns. I'm not sure that initial form that was filled in badly by the head of year had much bearing on the final diagnosis. Good luck, I remember worrying about whether Ds would get an assessment too.