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

[rakc]

Gosh! It sounds like quite a challenge. Well done on getting this far!
Why won't the school refer him?
You can also approach your GP and ask for advice. I've been impressed with how knowledgeable mine are.
Hope that gets you at least a next step. Good luck!

[BlankTimes]

Go for a multi-disciplinary team to carry out any assessments.
Usually the team consists of Paediatrician, Educational Psychologist, Occupational Therapist and Speech and Language Therapist
often known as Paed, Ed Psych, OT and SLT
This is how children are assessed on the NHS.

That covers all your bases then and the combined team can carry out several assessments to detail your child's needs, strengths and weaknesses and name any conditions along the way.

By all means ask to be placed on the NHS waiting-list. To me, these look to be pretty much on the ball.
www.esht.nhs.uk/service/community-paediatrics/
www.esht.nhs.uk/service/community-paediatrics/autism-assessments/

Also ask your GP if there re any private multi-disciplinary teams they can refer you to, as you'll need to ensure the NHS/LA will accept any diagnoses given if you need it as evidence for an EHCP.

You'll soon learn that some schools, teachers and SENCos are much better than others, same goes for GPs and anyone you think should be able to see, understand and advise about neurodiversity.

On your County Council's Local Offer page, do they have any suitable diagnostic services listed?

[ConstantChaos]

@rakc

Gosh! It sounds like quite a challenge. Well done on getting this far!
Why won't the school refer him?
You can also approach your GP and ask for advice. I've been impressed with how knowledgeable mine are.
Hope that gets you at least a next step. Good luck!

Sorry for the late reply - crazy week and notifications got lost in my messy inbox!

School won't refer as I don't think they feel his needs warrant it He's not disruptive in class, seems happy enough at school (we see the explosions!) and does actually try hard in lessons for the most part I think. His dyslexia screener also only showed "mild risk" - although I've heard they aren't very reliable and can often have false positives/negatives!

From school's point of view, they have started putting interventions in place - Nessy, 1:1 support 3x per week for specific areas of need, and other TA support. And, winter lockdown aside, he has made some progress this year So I think he doesn't really "qualify" for them to fund a referral. Plus they've only flagged possible dyslexia, which I understand never gets funded these days as as stand alone thing.

I haven't really involved my GP to date, as it was mostly about his learning, but we are definitely seeing anxiety and sleep issues creeping up, so I think that will be my next port of call. There's a particular GP in our practice who is usually ready to listen and good with children, plus there should already be a record of our contact with the school nurse service I think.

[ConstantChaos]

@BlankTimes Thanks for the info! I will definitely contact our GP as it would be good to get their input on the anxiety and sleep issues, aside from the literacy/school specific stuff.

I worry that he won't be seen as "bad" enough as he keeps all his stresses inside (even from us a lot of the time). Everyone I speak to (teachers, family, friends etc) are quite shocked when I tell them he explodes at home, has insomnia, can be aggressive, has lots of feats etc. They just see him as a sweet, polite, happy boy, but the longer that his school career goes on, the more anxious and unhappy he seems to be underneath his quiet/funny/sweet exterior.

I will certainly look into multi-disciplinary/community paediatrics referral. We're in a bit of an odd position though, as we fall on a county border and our GP is in West Sussex, but our school is in East Sussex, and our health visitor/school nurse contact. So I'm not quite clear on the where we fall in terms of SEN services.

I've had a look at the Local Offer websites for both East and West Sussex, but I find them pretty impenetrable! They each link to a directory of "services" but all jumbled up from tutors, to special schools, to discounts on days out etc etc!

[StarlightMcKenzee]

And Educational Psychologist Assessment would likely give you good pointers about which direction to take but would also assess his performance alongside his overall ability. Some of the most frustrated kids get so because they know they can achieve but just don't seem to be able to work out how, or do it the way the teacher says.

[ConstantChaos]

@BlankTimes guessing there's also a long wait for community paediatrics/multi-disciplinary referral?

The private educational psychologist we spoke to has us on a waiting list for possible assessment from September onwards, and then we'd be looking at the following spring if we wanted a clinical/neurodevelopmental assessment at the same practice.

And obviously that would still mean referrals to OT and SLT if indicated.

We could potentially see a specialist dyslexia assessor as a first port of call next month, but that would cost us £400 and I'm still just so undecided on where we should really be concentrating our cash!

[BlankTimes]

I worry that he won't be seen as "bad" enough as he keeps all his stresses inside (even from us a lot of the time). Everyone I speak to (teachers, family, friends etc) are quite shocked when I tell them he explodes at home, has insomnia, can be aggressive, has lots of feats etc. They just see him as a sweet, polite, happy boy, but the longer that his school career goes on, the more anxious and unhappy he seems to be underneath his quiet/funny/sweet exterior.

Absolutely 100% giveaway for Neurodiversity.

It's called Masking.

[ConstantChaos]

@StarlightMcKenzee

And Educational Psychologist Assessment would likely give you good pointers about which direction to take but would also assess his performance alongside his overall ability. Some of the most frustrated kids get so because they know they can achieve but just don't seem to be able to work out how, or do it the way the teacher says.

Thanks @StarlightMcKenzee, that definitely describes him He's insanely curious and very interested in learning, but gets so frustrated that he cannot seem to complete tasks in school to his satisfaction.

He definitely worries about misunderstanding the task and his work not being "right" - or it not being as neat or complete as other people's. He often seems upset that he "never gets to finish anything" and was once crying that myself and his dad "wouldn't have anything to look at on parents' evening"

He struggles with writing, but enjoys coming up with stories and gets very frustrated when he forgets ideas due to working so hard on spelling and handwriting. It must be very demoralising to always leave tasks halfway through, even those that he finds challenging.

[StarlightMcKenzee]

My year 4 - The other kids draft their writing, correct it, add words and then publish it. My kid publishes it on the first go. Otherwise the teacher will have nothing to mark. It means he gets half a chance at completing a project and the teacher offers verbal feedback for what he should improve for next time.

[ConstantChaos]

@StarlightMcKenzee

My year 4 - The other kids draft their writing, correct it, add words and then publish it. My kid publishes it on the first go. Otherwise the teacher will have nothing to mark. It means he gets half a chance at completing a project and the teacher offers verbal feedback for what he should improve for next time.

@StarlightMcKenzee When you say publish, do you mean word process on a laptop, or publish as in create a “final version”?

My son’s teacher have said that they may look into a laptop for certain lessons, to help him get ideas down on paper without the physical handwriting element. Although I think he may still struggle to hold his ideas in his memory for long enough!

Currently, his teacher helps him by helping him jot down words on a whiteboard/scrap paper so he doesn’t lose his train of thought while writing, but not sure if this actually helps him then translate them back into a fully fledged story or piece of writing.

And previously, I think his Yr2 teacher encouraged him to write stuff on a whiteboard and then copy it down for “best” which probably just made him feel like he had to do everything twice and/or made the task take longer!

During lockdown, his teacher allowed me to scribe quite a bit for him for tasks that were more about demonstrating knowledge (history, geography, reading comprehension etc). And for writing tasks, we often took a comic strip approach where he drew pictures and added dialogue and narration via speech bubbles/labels. Or he’s draw a diagram with labels or brief bullets instead of writing out paragraphs.

This seemed to really help him feel that he accomplished the tasks, but I’m not sure how much flexibility her gets like that in class

[StarlightMcKenzee]

I mean as in final version. My kid's first version is his final version. He doesn't have the Executive Function or stamina to write something and rewrite it. So he gets to write it once. That's it. Improvements are highlighted but not as errors and he doesn't have to rewrite.

[StarlightMcKenzee]

He needs an assessment. His planning and organisation and working memory seems to be an issue. It isn't the end of the world except that un-supported it will impact on his self-esteem. An Educational Psychologist is the best bet as they will point to types of diagnostic assessment to seek but in the meantime recommend educational support.

[ConstantChaos]

@StarlightMcKenzee

I mean as in final version. My kid's first version is his final version. He doesn't have the Executive Function or stamina to write something and rewrite it. So he gets to write it once. That's it. Improvements are highlighted but not as errors and he doesn't have to rewrite.

Ah, yes, I think that approach might help my son - he certainly wouldn’t be able currently to write something out, have it corrected, and then re-write! He struggles enough to get the words down in the first place...

We are currently on the waiting list for an ed psych and hoping this can happen in Sept/Oct and get the ball rolling before we head too much into the first term of Yr4.

We may also have the option to have a dyslexia assessment done earlier than that (in August), but perhaps that wouldn’t pick up so well on executive function, working memory stuff?

Is still get confused re the difference in the various assessment options!

[BlankTimes]

Is still get confused re the difference in the various assessment options!

Do you know enough about each condition to say 'I'd like him assessed for x alone.' ? Particularly when so many traits of one condition can overlap with others.

You're more likely to find the person who assesses them for that single condition also says they think there may be other things in the mix and suggests other assessments, you could be faffing around for years because each person you approach individually is only qualified to diagnose conditions within their speciality.

I'd advise you to go for a multi-disciplinary approach and let the medical professionals do their tests which are like games and activities for children, then they'll give you the diagnosis/diagnoses alongside a detailed report with scores and a summary of your individual child's strengths and weaknesses. That way you're covering all the bases in one go.

[MooritRomney]

My son really struggled, was aggressive and sad about school. Called himself stupid and started flat out refusing to do schoolwork. He was 6!!! We had him assessed at 7 by an educational psychologist and traveled out of our local area to find someone who could do it ASAP. Turns out he’s dyslexic and dysgraphic and has a very high IQ. He was just so frustrated as he was clever enough to see that things that came relatively easily to others we’re bordering on impossible for him.

As soon as we explained to him that his brain was different, but there was nothing wrong with him, all the behavioral issues stopped. He stopped calling himself stupid, stopped lashing out. It was like a switch flipped. It was wild.

[ConstantChaos]

@StarlightMcKenzee

He needs an assessment. His planning and organisation and working memory seems to be an issue. It isn't the end of the world except that un-supported it will impact on his self-esteem. An Educational Psychologist is the best bet as they will point to types of diagnostic assessment to seek but in the meantime recommend educational support.

Yes, I think definite issues with working memory ,and also with planning and being able to break tasks down into smaller chunks.

I know that school have noticed this and are doing pre/over-learning for certain things, and giving him tasks that are slightly shorter or more broken down. He is quite capable of understanding the work when being directly supported by a TA, but less able to work independently at the moment

[ConstantChaos]

Yes, good point - the areas of overlap are definitely a challenge! I hadn't heard of a multi-disciplinary approach before you mention it - his SENCO just suggested a dyslexia assessor or EP.

And, to be honest, if we didn't have history of ADHD/ASD in the family, I may have just accepted the suggestion for a dyslexia assessment and gone from there. But because I know a bit about those conditions via our family history, I do see some signs in him.

I'll check in with our GP and see if they will refer and/or steer us towards some private providers. I done some Googling and found Starjumpz which is fairly local and has good reviews - although I think they currently have a large backlog (where doesn't?) and may have actually closed their waiting list

[ConstantChaos]

@MooritRomney that sounds very like my son

I said to OH the other day, it (almost) wouldn't matter so much if he wasn't so aware of what peers were producing and worried/frustrated that he can't seem to do the same, or as easily.

He so desperately wants to do well, and is very capable verbally, for the most part. If I read aloud to him, his comprehension and attention are good, and similarly if I scribe for him he can demonstrate good knowledge of a given subject and come up with some very insightful observations and creative stories etc

But when it comes to working independently, I think he panics! It's like a freeze response because he knows that he will struggle with reading the questions/task and also getting his ideas down on paper. And he worries about running out of time to finish (which he always does of course).

In class, I think this translates to either jumping in and rushing without fully understanding the task, or day dreaming/getting distracted/waiting to see what others are doing.

And at home, it's more like fight/flight around homework, which leads to protracted attempts to get him to complete any at all (even maths on the computer with no writing etc) - of course lockdown home schooling didn't help this in the slightest!

[Myst97]

Hi there,

I agree with all of the above posters:

yes that behaviour is classic masking,

yes it sounds like he has a "spiky" profile (good verbally but struggles in some specific other areas whilst appearing otherwise highly intelligent),

yes an educationally psychologist report (private if you want to avoid the wait/can afford it) would be a good idea,

yes the school will probably continue to be unfussed as long as his behaviour at school is good as in my experience they won't take seriously any accounts of behaviour they themselves don't see (ie at home)

yes if it seems like flight or flight then it may well be, all the more reason to get an ed pysch report regardless of whether school think he is only at mild risk or not.

My well behaved-only-in-school daughter displayed very similar behaviour at that age - school told me not to worry as risk of dyslexia only very mild re their screener/opinion. Turns out she has severe dyslexia, dyspraxia, dyscalculia and a variety of sensory processing/ executive function issues whilst being really very intelligent. Of course by no means do I mean to say that your son will be as extreme as example as her, I only mean that it is perhaps worth getting an ed pysch report first to look for a root cause as opposed to going down behavioural or mental health routes.

yes my daughter's behaviour also had 100% improvement when she got her dyslexia and dyspraxia diagnosis as a) she not longer felt stupid and b) had her sensory needs met (quieter environment)

We also live across county boundaries (school/house) so happy to talk about how that worked out in the end. Email me if you like.

This page from the West Sussex Local Offer might be useful in terms of information gathering.

westsussex.local-offer.org/information_pages/485-just-received-waiting-for-diagnosis

Good luck!

[PutYourBackIntoit]

He sounds exactly like my dd did at 7.
She has just been diagnosed at the age of 12 with adhd.
Don't wait as long as I did.

We used adhd360 after a private Ed Psych report said there were some traits of adhd, dyslexia, dyspraxia. We tried to go through the school/nhs route for several years before biting the bullet and going private.

The adhd clinic have written to our dismissive gp, and forced their hand to finally refer us onto the NHS pathway for adhd (in addition to camhs for her severe anxiety - which the adhd clinic thinks is entirely as a result of untreated adhd). The stimulant medication they have put her on has instantly helped her focus, and the melatonin is helping her sleep.
I wish we had done this before her anxiety completely took hold.

[ConstantChaos]

@Myst97

Thanks so much for your reply! I was on holiday when it came in and then, well, start of the new term etc etc...

Your daughter certainly does sound very similar to my son. Interesting that her screening result was also "mild" and yet turned out to be much more severe. Obviously, the screening is only one quick tool and a snapshot of that day, but I think, combined with "good" behaviour in class, it's downplaying my son's struggles. I'm not sure his teachers fully appreciate how anxious he now gets over school work and anything new/challenging

We are on the waiting list for a private EP assessment in Brighton - appointments are in short supply apparently, but hoping we will get seen before the end of this year. That should obviously confirm/discount dyslexia, pick up any other SpLDs and also look at traits of ADHD/ASD/SPD etc.

And thanks for the offer of advice re us being cross-border. Not sure quite what impact that will have yet, but hoping it won't complicate things too much!

[Myst97]

I agree Putyourbackintoit - best to try and get support in place before the anxiety really gets a grip.

Happy to answer any questions if you like but otherwise good luck. With the right support, the world will become his oyster!

[ConstantChaos]

@PutYourBackIntoit

Thank you so much for your reply too I'm glad to hear that your daughter now has her diagnosis and that she is getting support with medication etc.

My biggest worry is exactly as you say - getting support for my son before he internalises his struggles and develops real issues with self esteem and anxiety Although, unfortunately, I think he's already well down this road, having started to flounder when he moved into Year 1 and towards more formal academics, rather than play-based learning.

School reassured us that all children find this a jump and that, as a summer born, he would adjust and catch up etc etc . They did provide some extra support in class, but it's clear that his confidence and self esteem have taken a massive hit over the last three years. Things did improve slightly over the last academic year, once he was screened and placed on the SEN register and in Nurture group, but obviously there is a lot of lost ground to make up

I'm hoping that our private EP will be a good starting point, but have also contacted my GP regarding the ongoing sleep anxiety/insomnia and also the fears, irritability, and self regulation issues etc that we see at home. He has suggested a referral to our local Child Development Centre and sent me a form for us and school to fill in jointly before he makes that referral.

Hopefully that might steer us in the right direction, but I'm aware that all these NHS services are very overstretched. We will definitely be looking at going privately if the wait is too long - I just want to know that we are directing our resources in the right direction!

Incidentally, as you went private for the ADHD diagnosis, are you now under the NHS/shared care for medication? I've heard that this can often be an issue and, while we have some funds for private assessments etc, we certainly couldn't fund medication privately as an ongoing thing

[ConstantChaos]

@Myst97 Thanks And yes, I really do feel like the world is his oyster - if we can just help him realise that!

He such a sweet, creative, curious, astute, imaginative boy It breaks my heart that he doesn't always get the opportunity to show his talents, and that he feels less able/successful/valuable than others who fit more easily into the school system

We are encouraging new interests outside of school, hoping to find some non-academic things that he enjoys and can succeed in. He (voluntarily) signed up for after school cookery club this term and is loving it so far - and so are we!

A trial at Cubs is also on the agenda for this week - he's reluctant and nervous, but the leader is very understanding and I'm hoping it might also open up new avenues for success for him.

Thanks again for all your input - it helps to get things off my chest and not feel alone in the strange new path!

[Myst97]

My daughter has thrived at first Beavers, then Cubs and now Scouts. They have been very good with her and all her issues and it has been good for her. Ok the first meeting or two she was a nervous wreck but after that it improved massively and she loves it. I hope your son enjoys it too!

Incidentally the Child Development Centre (and access to the consultant paediatrician via it) was key to getting the diagnosis ball rolling so I would recommend fill in the form asap!