NOT diagnosed with ASD/ADHD

[maybeCornish]

Since Covid DS's behaviour at home and mental health has been very challenging. He is 10 now and last year he almost had a breakdown when we moved locally, life has remained the same (friends, clubs, school etc) except in a house and not a small flat. He seriously struggled with the change. Since then life at home has been like walking on egg shells - you never know when he is going to explode and storm off. He is always on the go at home. He has to be in control of everything we do which is exhausting. However, school do not recognise any of this because he is so well behaved, gets on with school mates and is no trouble. The only thing is that he is very shy, struggles academically and is behind in his learning.

We have been monitoring/observing for the past year and keeping a note of behaviours and they are increasingly consistent with both ADHD and ASD. So much so that we had a private assessment done. The diagnosis is that he doesn't have ADHD because he only shows behaviour traits at home and nowhere else. The psychologist agreed that there are ASD traits present but not strong enough in multiple settings for him to be diagnosed. She suggested we continue to monitor and see how he develops.

We feel in complete limbo. He must be masking a lot at school to keep everything under wraps so well. We have a follow up with the psychologist after Christmas. What do you think we should ask in terms of next steps? We are desperate to help him and don't how to or how to parent him.

There are other possibilities. However, if you think ASD fits, how comprehensive was the assessment? How experienced are the assessors? Was DS observed in school or did they just take school’s word for him being ‘fine’? Masking in school isn’t rare. Neither is the coke bottle effect. This doesn’t mean DC can’t be diagnosed with ASD if they meet the criteria. Some schools often say DC is ‘fine’ when they are anything but. There are often signs if you know what you are looking for.

Have you spoken to your GP? Did the Psychologist offer an alternative explanation? Or strategies for supporting DC?

The assessment was pretty thorough and done by two experienced psychologists as per NICE guidelines. Detailed questionnaires for parents and school and he spent an afternoon being assessed at the clinic itself. Basically the psychologist agreed that he showed ASD traits during the time with her but that this was not substantiated by the conversation and questionnaire from his teachers. I think that because he is low maintenance at school and keeps himself under the radar the teachers are not noticing how anxious he is. It is a pretty mixed class with lots of issues so the teacher and TAs have their hands full.

I don't deny the diagnosis, I just want to know what this means for us and school in terms of helping him. I'd really like her to share an action plan with us that lays out how we can manage his behaviour and help him with his mental health at home. But also how school can be part of that. Just because he's no trouble, just behind in his learning doesn't mean that he is left to it with extra help in English.

I also plan to ask if this means that he is likely to be diagnosed as a teenager. He'l in secondary school by then which will be a huge challenge for him.

If the only reason they haven’t diagnosed is DS presents differently at school I think this is a problem with the assessment, especially when they haven’t observed him at school. Just because the school doesn’t see DS’s difficulties doesn’t mean they don’t exist. Plenty of schools see some pupils as ‘fine’ when they aren’t and the sighs are there the school just hasn’t recognised them or seen them for what they are. This doesn’t prevent DC being diagnosed.

Support in schools is based on needs, not diagnosis. The school should be providing support now.

Exactly this. I also want to understand how far off he was from an ASD diagnosis.

As above. NHS diagnosis here via CAMHS. Equivocal evidence from school first off, so the psychologist arranged to observe in school and picked up evidence first hand. They also spoke to the previous year's teacher.

Going through similar thing with daughter jumped through hoops completed tests telephone interview for over 2 hours had the backing of past and present teachers supporting evidence statements and the SENCO leads insistence but got the letter back and apparently she doesn’t have Adhd as she scored in the normal range for the QB test and because he school works wasn’t being effected too badly!!!!

lost for words over it all!