Should we have noticed?

[Meecrowavay]

Posting here for traffic. We went private for an Ed Psych/ND assessment for our 9-year-old (Year 3). Results showed very low fluid reasoning (8th percentile), even lower processing speed (2nd percentile) and also low pseudo word decoding (27th percentile).

School recently flagged minor number processing concerns but say she’s on track academically with no reading/writing/spelling issues—so no plans for dyslexia testing.

Her older brother has NHS-diagnosed ADD and autism, which prompted us to seek testing. The private Ed Psych ruled out ADD and autism but diagnosed moderate dyslexia and dyspraxia. While we’ve noticed mild challenges, the report highlights significant issues.

Should we or the school have spotted this earlier?

Tests given:
Wechsler Intelligence Scale for Children-V UK (WISC-V UK)
Wechsler Individual Achievement Test third edition UK (WIAT-III UK)
One Minute Writing

Don't blame yourself at all! Some things really aren't blindingly obvious until they are, well, blindingly obvious!

The one thing standing out here is that a sibling is diagnosed Autistic and ADHD. The genetic heritability is incredibly high. Did the Ed Psych actually conduct an ADOS based assessment for Autism here? I would want to know exactly how they determined it was not relevant.

Try move forward now looking at support needs for that identified so far rather than getting upset with yourself for missing things. I feel many in this situation miss alot because we just didn't realise. 💐

@Wishyouwerehere50 No ADOS conducted. She struggles a bit with emotional regulation. I had wondered if she had atypical presentation of adhd and/or high masking.

Actually, perhaps unfair to the ed psych to say "ruled out". More accurate to say at this stage it's not something they would advise further testing on. Knowing the NHS process locally I do struggle to see how she'd currently meet the threshold for even being considered for testing. School don't have this on their radar for her either.

I would not automatically trust the conclusion that your child is not Autistic, particularly with a sibling diagnosed.

The findings are really helpful in terms of particular learning challenges and support needed there. But I would feel uncomfortable with any conclusions drawn without following the exact , correct NICE approved ADOS assesment process.

I sat in on my son's Autism assessment. It's very thorough, very specific, multi disciplinary and therefore you know with absolute certainty what's going on and anyone trying to challenge this would just look stupid. So it's important the right assesment is carried out.

It's going to be really difficult accessing this on the NHS if a professional has written in a report no ASD. Because resources are so limited, they're eager to turn as many people away as possible.

If you can afford it - look at a private assessment looking only at the assessment of Autism and ADHD. Autism being the priority.

It's important to know I really believe.

Ok I wouldn't trust that because with a sibling, it absolutely is something that should be assessed. And I'll guarantee professionals in the NHS are being actively encouraged not to ' encourage' assessments. They can't cope with the influx.

If you can get the money together, just go straight to finding your own assessor who follows every NICE approved process. A female imo is also important.

I personally think dyspraxia is quite hard to diagnose unless your very familiar with it. Dyslexia can fly under the radar relatively easy if not severe. I have a friend who was only picked up during their PhD after getting a 1st in their undergraduate degree.

I have two dyslexic children and found using word wasp with them really helped then toe by toe. You can buy the books and do them at home yourself with child for 10 mins a day.

OP, just to say - I appreciate you might not want to pursue any more at this stage and of course that is absolutely ok. It's alot to take all this in and one thing at a time is the usual mantra here 💐.

Edit to add -my comments are regarding autism only. Nothing at all to do with expertise in other areas such as dyspraxia. I don't doubt their skills here. It's just difficulties to be certain ref Autism without following the standard process. It isn't always obvious. 🙏

@Wishyouwerehere50 Thanks, this was a private assessor who didn't think it was an issue - but son went through the (years long) NHS process.

I think we'd have to go private again on the adhd and autism diagnosis as knowing what they ask about I just can't see her meeting the threshold for referral. Which is frustrating as I understand that girls can fly under the radar. I'll have a look at some assessors locally who could do this.

I think it is hard as a parent to know what is just below average and what is bottom 10/5/1%.
We flagged issues to school for DD2 on and off for years but kept being told she was 'fine'. Eventually after a MH collapse and recovery she was tested with various things coming out in bottom 1 or 2%.
I do inwardly blame the school as they had 100s of other to compare her to, and we didn't.

Thanks, I'll look at these. I guess my surprise is that she performs well (average or slightly above) for reading and spelling. Reads fluently or so it appears! I assumed we'd have seen more problems in this area before now.

I hear you. Had similar issues with son for a long time. Lots of "watchful waiting" and "oh it's probably just because of the Covid lockdowns" until painfully obvious there was more going on (he's now ADD and autism diagnosed). It was much more obvious to me that he had significant challenges though. I had hoped my other children may be spared!

I agree that teachers should be able to pick it out (or at least have a hunch) when they see the full spectrum of abilities when they teach. It feels like there's a reluctance to say or commit to anything. It's not helpful. With my daughter there hasn't even really been any whisper of anything untoward until very recently. Even then, concerns only related to number and she's still "on track". She's not been identified to receive any intervention or support for learning.

I'd consider learning differences before ND tbh, processing speed is likely to be more impactful with age as work becomes more complex - depends on recommendations from Ed Psych. Is there IEP in place? What are the school doing to support?

@ThirdCoffeeThisMorning Still to forward report to them. Delayed with current holidays. There are lots of recommendations in the report for stuff I know they've dismissed already. Colour overlays for text and such like. They've already said she doesn't need any of that (hence why they didn't think it was dyslexia). Perhaps they'll look at things afresh with the report.

Try not to beat yourself up. My eldest wasn’t disganosed with ASD until 13 and ADHD until 18. Despite that both school (where both kids went) and we missed my son’s ASD (diagnosed at 15) and now (at 17) his ADHD.

They both present so differently, yet it’s totally bloody obvious now. And I have 3 siblings with ASD/ADHD/dyslexia. Though it only took until a few years ago for me to realise I, myself am AuDHD…

It’s such a broad spectrum that it’s hard to understand the nuance. A diagnosis at 9 is still relatively early and gives plenty of time for support and adaptions.

OP, I spent years blaming myself for my son's oddities and issues.

GP offered parenting classes, no one suggested anything other than a trauma / parenting issue.

A school headteacher dropped a few hints and then the penny dropped. But the NHS refused to assess as not enough evidence.

So I started with an ADHD assessment privately. And at the end the guy said, based on this and the Connors questionnaires, ( completed in 3 settings by 3 people), definitely ADHD. I said,do you think any chance of Autism? He said I don't assess for that so possibly speak to x, y,z.🤷‍♀️

You have lots of professionals dealing with all these differences but only certain professionals really understand and can appropriately assess. I can't stress that enough.

I then searched for a good Autism assessor myself. I wanted to be sure they followed all guidance regarding how to effectively assess. I wanted a female too. They also assured me they'd happily be contacted should anyone challenge the expertise of them, their process and diagnosis. This was really important for me. ( Gaslit to high heaven prior).

I sat in on this exceptionally thorough Autism assessment and saw things about my own child I'd never realised. This was by age 10. I felt so bad. This is common I believe so no room to beat yourself up now OP.

I recently consulted a great ND aware psychiatrist to discuss support options for my son. ( Private again of course). The most important thing she advised was to write to the school, it must be in writing, and ask them for a copy of the IEP for our child based on identified difference and need.

Things might be relatively ok now, but the wheels do and will fall off as children with support needs get older and especially by secondary.

An email might look something like;

Dear SENCO, please see attached Ed Psych report. I'm eager to discuss how school will be able to support identified learning needs based on these findings. It would be helpful to have sight of an IEP for ( child) wherein the support she will receive for these learning needs are defined.

Could you confirm when it would be possible to have sight of an IEP for ( child) based on identified needs. If you require any further information from me, I'd be more than happy to meet with you.

I am in the process of exploring feasibility of an Autism assessment based on ( child) having a diagnosed sibling and will keep you abreast of that.

Best wishes

This might feel like too much. I can't stress how hard this stuff can get by secondary. Doing this is just paving the way and let's school know not to try dodge this. They will try dodge approve support because they're really struggling resource wise. He who shouts loudest is the game right now. Maybe you aren't ready now but down the line you'll need to advocate hard. 💐

I think it’s difficult when you have one child with additional support needs to spot that another might. We adjust our parenting style to support the child with known needs and those adjustments often hold the other steady enough. It’s also pretty usual for issues to pop up around 9/10 because school starts to be more demanding and differences with peers become more apparent as they mature typically and the child with additional needs starts to show gaps.

In terms of reading, check that your DD is reading and understanding - I thought my DD was reading well until homeschooling in lockdown showed that she memorised the shape of words and associated meaning, but couldn’t decode because she hadn’t learned the principles. She’s very clearly dyslexic amongst other things. Toe by Toe is old but fantastic both for assessing and teaching - designed for use by parents.

Have ordered toe by toe! Thank you.