Nearly 7yo asd/adhd son can hardly read

[Soneurotic]

Only this last year we’ve realised my son likely had asd and adhd. Before this we just thought he was passionate/energetic/stubborn! (And school hadn’t been noticed anything)

He has just finished year 1, and I’m worrying about his reading. I realised he was getting more behind in feb and started trying to do just 5 minutes morning and night- phonics flashcards or school book or reading eggs or nesssy, hoping he’d catch up.

The problem is it is SO hard to get him to do it, he’ll agree to sit down but then can’t sit still/talks about other stuff/ guesses words. If he does manage he only does a few minutes.
He was screened for dyslexia and got ‘mod risk’ on the nessy screening, im getting him assessed by Ed psych as soon as he is 7.

Currently trying to do toe by toe but it is soooo slow and tricky getting him to do it. He knows all the phonic sounds but takes him a while to sound it out and he just doesn’t focus on it. I find it really frustrating as he seems clever but I’m starting to think he’s not going to pass any exams when he is older. If he could just engage with it it would be so much easier! He is also pretty behind on maths (I don’t think he is unately bad, just doesn’t want to focus on it)

im finding it hard not to worry. Wondering if I should get a private assessment re adhd and try meds in case that helps? But I’m not sure how much is adhd and not being able to concentrate, or asd traits eg being worried about failing so refusing to engage, or weather dyslexia. Probably a combination of all 3

anyone else have a similar child? Any advice? He is brilliant at building with Lego and talks about being an engineer but I feel that that is looking more and more unlikely :(

My ASD/ADHD DC (who is demand avoidant) wasn't diagnosed until last year, but has always refused to read (I felt we must have looked like absolute slackers in terms of book bags/reading logs, but it was counter-productive to try and force him). Now at secondary, he was tested, and his reading age was found to be a full 2 1/2 years older than his actual age. No idea how he has accomplished this (possibly reading whilst gaming?) but I have ceased to worry.

Meds are certainly worth a go. My DC has a much better experience at school when taking them - he is better able to engage with tasks and finds social relationships easier too (although a QB test revealed that whilst the meds work, he is still significantly affected by inattention and impulsivity).

I got an independent Ed Psych report done - cost more than my car, but has been revelatory in terms of understanding how he functions cognitively and the support he needs. Now fighting the long battle to get that support put in place via a decent EHCP.

Hope it works out Ok for your DS, too, OP. It's a long game. Please don't feel anything is out of his reach.

Reading your story is like it has been written about my son and me. He has recently been diagnosed with dyslexia as his handwriting was very poor and his reading was challenging and behind his peers. Similarly to you I tried to work with him but it was tough with the levels of avoidance and frustration on both sides constantly coming to a head. We’ve had tutoring with a SEN tutor and this has helped a lot. We are trying to see someone regarding the ADHD assessment but need to go private and struggling to find a good paediatrician - looking for recommendations for London / SW London based paediatricians if anyone has any? Similarly my son is bright and great with Lego, construction and loves history and science but reading has been hard and he consumes more video to learn at the pace to match his interest. I am interested in eaudesud comments on gaming as our son has quickly become obsessed with gaming and I don’t know if beneficial or prohibitive - my point though is they all seem to have similar behaviours and interests

Yes, neurodiverse kids have a different relationship with gaming, as I believe there is reserach evidence that it helps many individuals with emotional self-regulation and relaxation, and provides space to play and learn skills, potentially including things like teamwork, in a way with fewer stressors than some other environments.

There is also the question of neurodiverse patterns of interest and concentration, whether 'special interests' in autism or hyperfocus in ADHD - if areas of deep interest are harnessed for learning, then some of the cognitive advantages of neurodiversity can be experienced in a very powerful way. I believe this is how my DC developed his own reading ability.

Thanks both for taking time to reply.
Interesting about gaming being a way to learn reading- I’ve heard someone else had a similar experience with their son learning this way too. I’m scared to go down gaming territory though as I think then nothing else would compare to that dopamine hit for him. I find it hard enough navigating tv time.

Im really up for trying adhd meds. Trying to work out how much it would cost to go private. Sw14mum I don’t have any recommendations, but have heard it is worth making sure it is a doctor rather than a nurse that does the assessment, ideally one that also works in the nhs, as their report is more likely to be trusted if care then transferred to nhs or if you have to apply for ehcp etc (though don’t know the specifics, just what someone said).

This is so hard isn’t it. I’m not particularly enjoying the summer hols :( So weird because this time last year everything felt fine and all his traits I thought of as positive.

eaudesud it’s good to hear that the reading worked out fine in the end. Good luck with the ehcp

DD was similar at that age. Didn't learn to read much at all until she was 7 and it's still a struggle.

She has dyslexia and ADHD - and now medicated. We got the dyslexia dx at 7 and ADHD this year at 14.

She also learned far more reading from things like games where she had an added incentive.

FWIW, she has high predictions for GCSE, despite not being able to spell or punctuate. The biggest help was moving to a laptop in Y6 and just focusing on content - nobody even attempts to correct spelling or punctuation.

In terms of costs of going private for ADHD, the overall bill for assessment, follow-ups, private prescriptions etc is working out at around £2k.

We went with a psychiatrist who was formally head of a bit NHS adolescent unit, and I checked with the GP that they are happy to do shared cared eventually. The prescriptions are currently over £120 a time, so I am looking forward to that point! After that happens I think it's just an annual check-in with the consultant.

Medication has been hugely beneficial for DD - although has not made her suddenly great at the subjects she dislikes. More that she might take something on board rather than nothing at all.

Thanks @ANonnyMice really useful to find out how much the adhd assessment and prescription cost all together.
Reassuring to hear that medication makes a noticeable difference, and amazing re good predicted grades! Thanks for taking the time to reply

Have you spoken to the SENCO? Is the school going to provide further support? Have you considered requesting an EHCNA?

@OvertakenByLego the class teacher was the senco and didn’t seem to think there was anything wrong! Didn’t think he had neurodivergent traits when I suggested it and never told us he was way behind (then he ended up getting 22/40 on phonics screening). I think perhaps she was burnt out as then suddenly toke early retirement. Met new senco just before summer hols and she seemed good- said he will do precision learning and will read with an adult every day (they used to just do phonics in groups and read with a partner). I think we will need EHCP though. I wasn’t sure whether to just go straight ahead and do a parental request or whether to wait until educational psychology assessment in Oct as then more evidence he meets the threshold for needs assessment?. I don’t understand the process well enough yet.

An EP assessment isn’t necessary prior to requesting an EHCNA. The threshold is relatively low (has or may have SEN, and may need SEN provision to be made via an EHCP). However, depending on what other evidence you have, you may decide to wait until you have the EP report. If you decide to wait, you could use the time between now and getting the report to collect evidence e.g. submitting a SAR to the school (and potentially the GP too). Has DS been referred for ASD and ADHD assessments?

@OvertakenByLego he was referred by school in April for asd/adhd assessment only at my insistence, and his class teacher/then senco just wrote two lines basically saying his written work didn’t match up with his verbal ability- nothing about any other traits. I wrote loads on the parent bit so the referral was accepted and he is on the waiting list. It was only the meeting with new senco just before summer that he was added to Sen register. I was going to do a parent request as want all the support as soon as possible, but then was worried I don’t have enough evidence of disability or need- the evidence mostly just all comes from my observations re asd/adhd, and him failing phonics screening. I wonder if it is worth doing anyway though, and if they refuse to do needs assessment I could then use the EP report at the appeal thingy? Or im not sure id be able to use new evidence then? It’s so confusing!

Just suddenly wondered- would the LA organise an educational psych review as part of the needs assessment? I imagine it wouldn’t be as thorough as paying for a private one though

If the LA agrees to assess an EP assessment will be part of the EHCNA. However, as you say, it is likely to be less detailed, specified and quantified than an independent EP report. There are pros and cons of waiting until October when you have the EP assessment and of requesting an EHCNA now. If you make the request now and the LA refuse to assess you can use further evidence to appeal.

@OvertakenByLego that’s all really helpful, thank you very much

Similar here. She would tolerate a bit of Teach My Monster to Read and Reading Eggs (which has Maths too).