Dyslexia/ADHD/SPD - where to start with assessments?! [confused]

[ConstantChaos]

Hi everyone,

New to the boards and seeking advice on getting support for my 7 year old.

He's in Year 3 (summer born) and has been struggling in school since Year 1. He loved nursery and Reception, but found the academic jump to Year 1 pretty hard. Initially, we just assumed it was due to being young in the year etc, but then he started showing post-school explosions at home, particularly as we progressed into Year 2, and saying that school was too hard, there was too much reading and writing, everyone else was better than him etc etc

Reports from his teachers were always "good" in terms of effort, attitude, behaviour etc, but by Year 2 his attainment was being marked as "needs improvement" across the board and his listening skills, resilience and confidence were really beginning to dip. We talked to his Year 2 teacher in early 2020, as we were seeing more and more outbursts (ie. stress behaviour) at home, but his teacher reported that our son seemed happy, was making progress, was growing in confidence etc

Then of course came lockdown... And we started to really see how far he was behind the level of the set work and how much he struggled to engage and focus, particularly on reading and writing tasks. Despite his innate curiosity, thirst of knowledge and general love of learning!

We took a mostly un-school approach during the pandemic, but raised our concerns with his Year 3 teacher and SENCO at the start of this year and also involved the school nurse service as they advertised help with emotional wellbeing (although this didn't prove very useful, as they weren't allowed into school and he wouldn't engage via video call!)

The SENCO screened him for dyslexia towards the middle of the autumn term and deemed "mild risk" - this lead to targeted 1:1 and group teaching for reading and certain other areas, and him being put on the SEN register. He has made reading progress since this (although still around 2 years behind I think), but writing is still a real struggle and something he has a huge mental block over. He has very low self esteem and constantly compares his spelling and lack of neatness/ cursive against his classmates

School seem fairly unconcerned overall - they've been quite good at starting more targeted support for him this year, but also don't quite see the extent of his frustration, anxiety, low self esteem, self-criticism etc. Having said that, they have started him in their Nurture Group programme to try and help him with his resilience and self-belief, so we'll see if that helps at all. His emotional wellbeing is definitely one of our main concerns as I'm sure he just thinks he stupid a lot of the time And he's recently started displaying more anxiety symptoms and has started having trouble falling and/or staying asleep at night. So at night I'm either up with him, or awake worrying about him!

I've rambled, but I guess my question is "where do we go next?" School won't refer him for any official diagnosis or assessment, so it would be up to us to seek private help. Aside from the dyslexia screening, we also wonder whether others issues may be a factor such as inattentive ADHD, auditory/visual processing issues, general anxiety, or SPD type tendencies. His focus is generally quite variable, he struggles with emotional regulation and has always been bothered by auditory and visual stimuli (loud/sudden noises, lights, visual details or changes in the environment that most wouldn't notice etc). We do have ASD and ADHD on my husband's side of the family, and dyslexia on mine, albeit more removed in my case.

So, can anyone suggest the best course of action? Should we seek out a dyslexia assessor as the first port of call? Or find an educational pyschologist who could perhaps look at SpLDs alongside the possibility of other co-morbidities and ND traits?

Does anyone have any local recommendations for professionals to contact? We're on the West/East Sussex border. Have heard good things about MPA (McKeown Psychology) in Brighton and a dyslexia assessors in Crawley Down (can't recall name right now).

We're feeling pretty overwhelmed right now and unsure which professionals to contact! I think I've read around the subject too much now and confused myself with possible conditions, co-morbidities, assessment routes etc etc. So much information and possible avenues, but they obviously could all cost a pretty penny so we're keen to work out where best to start!


Thanks for reading and any suggestions much appreciated

[ConstantChaos]

@Myst97 That's encouraging re Cubs etc I think he might enjoy the variety of activity and the emphasis on teamwork, supporting each other etc. The leader sounds lovely and apparently her own son is similar in worrying about new things etc... so I am hopeful!

I was pretty surprised when the GP actually raised the question about ASD/ADHD and suggested a referral to the CDC. I fully expected him to be a bit dismissive and send me to some websites or back to the school nurse etc...

I'm completing the basic info and preparing to send the form over to school now - I just hope they are as accommodating! And that school being in East Sussex and our GP in West Sussex doesn't cause any headaches....

[Moonfly574875]

Wondering how things are going op?

My dc is in a similar position. We will fund a private assessment (also query dyslexia/adhd) but where to start...whom to approach?

I have contacted the SENCO at school and measures are being introduced to help ease anxiety etc. but a psychiatric assessment is required to ascertain what is actually happening for dc.

[BigCCC]

OP, your son and mine are the same age and I'm treading the same path as you. I am only sorry I didn't see your post earlier, it could have been my own. So far our story on assessment is (all 2021):

Dyslexia assessment; went private, school happy to screen, but were really clear they had no cash to pay for diagnosis. Private diagnosis very clear on dyslexia (v spiky profile) ad indicated strong signs of visual stress and 'attentional problems'. School supporting him mainly through seating him front and giving him keyboard when he needs it. This has helped. £400 to start with.

Found ophthalmologist through babo.co.uk/ and had assessment for visual stress. Got new specs and lots of exercises to do. This has helped but was very expensive (assessment, specs, spare specs, check ups). I wouldn't start with it - can tot it up but is terrifying.

Tried GP for LA assessment for attentional problems. Waiting list as long as your arm. So, have booked a private assessment and was able to get for £500, coming up in a week or so.

Doing it in this order has been useful for me to try and see what was working. I hope that the ADHD assessment will fill in the final piece of the jigsaw.

I would describe my son as very lively, boisterous, fearless, kind, impetuous, has no idea which day of the week it is and cannot do his shoelaces, but has a vocabulary and understanding beyond his years. I am focussed on keeping his confidence high - this is absolutely the biggest challenge.

[ConstantChaos]

@Moonfly574875

Wondering how things are going op?

My dc is in a similar position. We will fund a private assessment (also query dyslexia/adhd) but where to start...whom to approach?

I have contacted the SENCO at school and measures are being introduced to help ease anxiety etc. but a psychiatric assessment is required to ascertain what is actually happening for dc.

Hi @Moonfly574875

Sorry that you are in a similarly confused position! This is the most stressful thing I think - knowing your child is struggling, but not knowing where to start or who to approach in unpicking things

SENCO was our first point of contact too and I'm glad to hear that yours has started to put some measure in place re anxiety etc. Have they also screened your DC for dyslexia or made any other suggestions?

Meeting with our SENCO got the ball rolling re screening DS for dyslexia, putting him on the SEN register, including him in their Nurture Group, and establishing more targeted 1:1/small group interventions for phonics and maths. This has all been really helpful in a practical sense for DS and is something that school can do on the basis of need, rather than a diagnosis.

Having said that, after being on the waiting list since June, we do also now have a private Ed Psych assessment scheduled for next month We are hoping this can initially rule dyslexia and other SpLDs in/out, provide some specific pointers for us/school, and highlight any ADHD/ASD traits that might warrant further investigation. If the latter proves true, then we could potentially fast-track a bit to see a clinical psychologist within the same practice (although that would probably still mean waiting until spring/summer next year).

At the same time, we are also pursuing a referral to the Child Development Centre via our GP, who's been much more helpful than I expected . The SENCO and class teacher at school have just completed their elements of the referral form our GP supplied and we are now adding our voice to it before returning. Our GP will then hopefully make the referral and we will see what comes next and how long we may have to wait within the NHS machine!

I'm still not entirely clear on the ADHD/ASD pathway within the NHS, or whether a (potential) private diagnosis of ADHD via the clinical psychologist would be worth anything in terms of treatment for DS. It may be that we have to seek out a psychiatrist for that But we will cross those bridges once we have seen the EP and heard more from our GP/the CDC about their processes!

Have you been able to make any progress since you posted? Did your SENCO or GP provide any advice? The waiting lists for everything, including private assessments seem so long, which doesn't help!

[ConstantChaos]

@BigCCC Thanks for your message and sharing your journey so far - all sounds very familiar

We have just recently been for our private EP assessment - still waiting for the report, but sounds like dyslexia will be confirmed. Low scores for literacy, numeracy, working memory etc, against a higher verbal and spatial ability. They also had to break the test session down into smaller chunks as he just couldn't concentrate for long enough! He did really well though - thought he would be off-the-charts anxious about it, but actually coped better than I expected (helped by a "day off" school and a train ride there!)

Not sure what our next steps will be, other than waiting for and then processing the EP report of course. School are continuing with the 1:1/targeted interventions and the nurture group for self esteem etc, but we will obviously share the report with them and have a chat about whether any additional support might be required. The EP also mentioned something called CLASS that school might be able to request support from, but I'm not sure what that is!

I'm not sure whether the EP report will pick up on any possible visual stress... did you see an EP or dyslexia assessor? My son does loose his place and get tired when reading, but I'm not sure whether that's down to visual stress as such, or rather getting distracted and/or distracting himself because he just finds it all so hard!

I did get some quotes for behavioural optometry/Irlens/visual stress assessments and they are super, super expensive £500 for the initial BABO consultation, plus additional £££ for any glasses, therapy sessions, reviews etc on top. Slightly cheaper at £100 for either something called School Vision (not full BABO qualified, but looks at convergence, focusing, colour etc), or an Equilens visual stress screening, including colour "prescription" and overlay if required. Both of those then had additional costs of around £400++ for full assessment/glasses, follow ups etc Apparently there are also NHS orthoptists who can assess for visual stress/visual processing difficulties, but I don't know how you go about getting referred and what the "criteria" would be

We are also still in the process of completing a referral from our GP to local NHS Child Development Centre for attention issues (picked up by both school and EP) and also for general anxiety, insomnia, social struggles. No idea whether we will be accepted for a referral or how long we may have to wait... Who have you booked your private assessment with, if you don't mind me asking?

Thanks again for taking the time to write - it's helpful to just hear from other parents who are treading the same path I feel much better for having made the first step in getting an EP assessment - now just impatient for the report to see if it shines light on what our next steps should be.

Your son sounds like a fabulous human being - as you say, the main goal (and challenge) for our kids is keeping up their confidence and keeping them believing in themselves and their unique strengths My son has really struggled with feeling "stupid" or "not good enough" over the last 2/3 years at school, so I'm just hoping that we can find those puzzle pieces to help him, us, and his teachers to understand and support him better - and that you can too for your DS.

[BigCCC]

@ConstantChaos I have updates for you too. DS had his private ADHD assessment through //www.tcfp.org.uk who were great with him. Spent time drawing pictures together and talking to him, although Dr did not hesitate to give ADHD diagnosis having seen his screening questionnaires from me and school and having watched him action for a very short while. It was £500 for assessment. DS has begun treatment with Medikinet (private prescription was £30 for one month supply) and the difference has been really startling. He now has hyper-focus immediately after meds and then is a bit more hyperactive afterwards. For the first time in his school life I had to tear him away from homework after an unbelievable 1 hour + in which he concentrated relentlessly. It is clearly isn't 100% an answer as it doesn't feel balanced yet, but he goes back for a reassessment in a few weeks time to see whether he can move to slow release medication which should be less extreme in terms of the effects. DS understands why he is taking it and is happy to. We are London based and my next step will be to try and find a support group or people to speak to. It really, so helps to speak to people on line such as you, going through something similar. I've been putting in the prices of everything here as that is such a mystery when you go looking I think. On the visual instability, I'm not sure you can get referred for it, frustratingly, but it does seem to have helped him a little.

[ConstantChaos]

@BigCCC Thanks for the update Glad to hear that you now have a diagnosis and that your DS is starting treatment. Concentrating on homework for a good hour sounds nothing short of extraordinary! Hope he continues to do well and that you find the right dose/balance for him through the med titration.

We have just got our EP report back and dyslexia has been confirmed. He was tested using WIAT III and scored very low (2nd centile) on single word reading and low (4th and 6th centile) on pseudoword reading and spelling. Maths was a little stronger and in the lower average range.

His scores on the WISC V cognitive tests were pretty spiky and the EP wasn't able to calculate an overall FSIQ or GAI score. He was stronger in verbal comprehension and visual spatial tests, and scored high average for his processing speed (82nd percentile). But his fluid reasoning and working memory were lower (12th and 8th percentile). The report also highlighted "attention and concentration difficulties" and that DS struggled with confidence and being able to attempt or persevere with tasks outside of his comfort zone.

I wasn't surprised to see verbal and visual spatial strengths - we have always felt that he was more able verbally than what he can get down on paper, and he definitely has a knack in Minecraft or Lego for visualising things in 3D! His powers of observation in general are strong and from the word go he's noticed the tiniest changes or details in his environment. His low working memory also wasn't a surprise as I often see him losing the first part of a maths problem or forgetting the first instruction in a series. When reading, you can see him struggling to retain the first sounds/syllables as he works out the next ones - hence usually just guessing or adding in sounds that aren't there!

I wasn't expecting his processing speed to come out as a strength though. When reading about dyslexia, I've heard a fair bit about slow processing, not fast I always assumed that he was slow to process information, as it takes him an age to respond or start a tasks... but perhaps the issue is more in the retrieval or assembly of that information in his working memory? Or maybe it's just auditory information that he struggles with, not visual - I think the WISC V mostly looks at visual processing, but I could be wrong on that (something for me to clarify with the EP I think).

So, anyway, we do now have confirmed dyslexia and I will be sharing the EP report with his SENCO and teacher. Most of the recommendations in the report are actually things that the school are already doing, but it's nice to have them confirmed independently and have some extra "weight" behind his need for support, 1:1 interventions etc. The report also stated a need for extra time and a reader/scribe in tests so hopefully that will help him in the future.

I'm not sure where we go from here re further assessment for ADHD or ASD. The EP did pick up on attention issues, but also anxiety and attempts to distract the examiner/himself from difficult tasks, rather than him getting distracted IYSWIM. We could book a top up neurodevelopmental assessment with the clinical psychologist in the same practice, which would potentially confirm/dismiss ADHD/ASD, but not sure where that would leave us in terms of medication if he did receive a diagnosis - there are no psychiatrists or paediatricians there who could prescribe. We might be better off going straight to somewhere like TCFC or pursuing our CDC referral even.

It's good to have dyslexia confirmed and a deeper insight into DS' areas of strength and weakness - now to just work out whether there are more puzzle pieces still to find!

[ConstantChaos]

@BigCCC Forgot to add - finding a local support group is a good idea It's so helpful to talk to people like yourself online and hear from those on a similar path - I've found lots of food for thought or things to research from the forums here and on FB. But a local group might also be helpful as there seems such a postcode lottery in terms of services and how they operate in each different county

We are in the South East, so can potentially access services in London, which is helpful, but we also straddle a county border so our school is in East Sussex, but our GP is in West . Not sure where that leaves us in terms of NHS services, so I may well be hunting down local people in a similar boat!