Suggestions re diagnosis for DS (16)

[JanetHorne]

Background:
DS was precociously bright as a small child, with an excellent vocabulary and a great love for stories. However when he started school he wasn't progressing as we and his teachers thought he should. He was referred to ed psych at 7, but the educational psychologist said that he could not understand why such an "obviously capable" child had been referred. He was referred again 2 1/2 years later, at almost 10. This time the educational psychologist (a different one!) said that DS had a reading age 3 years ahead of his age, but a spelling age 2 years behind, and this 5 year gap between reading and spelling indicated some sort of learning issue. He was diagnosed with an "undiagnosed learning issue" which entitled him to extra time in exams, but didn't give any help re strategies etc.

We have found that teachers are initially surprised, when they first teach DS, to see from his notes that he's entitled to extra time. Some have queried it, but a few months in, they all agree there's "something."

Issues:

1. He has a poor grasp of time. He finds it hard to estimate how long something will take. Even with extra time, he often writes an essay for a two-mark question, and runs out of time. I'm still giving him a 20 minute warning if we're going somewhere. He regularly misses buses or trains because no matter how often I tell him to build in wiggle room, and no matter how often it happens, it comes as a surprise every time he goes to catch a train and finds that one ticket machine is broken and there's a queue at the other. He doesn't miss trains by much - he's usually in the station as he watches them pull away.

1. He struggles with sleep - he's often awake half the night and falling asleep during the day. He naps chaotically.

1. He manages complex ideas and instructions, but not short, simple instructions. It's as though he doesn't always see them. "Leave a margin" "Use black ink" "Write in block capitals" - He regularly has to redo work because he has ignored a small instruction.

1. Things which seem simple to most people often seem complicated to DS.

Lockdown and working from home was catastrophic - his time management is so poor. He's becoming discouraged and I'm worried about his mental health. He's still very obviously intelligent - he's a prize winning debater - but he's not managing to achieve good school results. He wants to go to university, but there doesn't seem to be much chance of that unless he can start passing exams.

Does this sound familiar to anyone?

He sounds very like my 12 year old DD....amazing vocabulary, her reading age is ahead of her age and she tells the most incredible stories...but only verbally. Can't write them down.

She also has trouble sleeping and is messy and forgetful.

We've just had a diagnoses of ADD and dysgraphia.

The ADD causes her to forget the spelling to words...or be unable to retain them without a lot of practice. The dysgraphia causes her to be unable to write reliably.

Her ADD is the attention deficit kind without the hyperactivity...your son sounds very like her. Her writing is illegible at best...she runs all the words together and her school is concentrating on teaching her to touch type as that's easier for kids like her.

Thank you.

DS can write stories down. Our nearest university runs an annual story writing competition, with the winning entries published in an anthology of twelve stories, and he's been in it twice. He's won other writing prizes, too, but has never done well in an English exam, because he can't pace himself under exam conditions, or he misses the "P.T.O" at the foot of the paper and doesn't realise there are questions on the back of the sheet, or he didn't realise there was going to be a test and failed to revise.

Spelling was a big problem in primary, but he uses a spellchecker now. He still can't spell, but when he sees a word written down he knows if it is correct or not.

His handwriting is difficult to read, which was an issue in primary, but he types most things now.

FortunesFave, can you tell me more about the ADD? DS definitely isn't hyperactive. He can spend hours engrossed in a book, or watching a film. I've just googled ADD and it mentions "day dreaming" which definitely fits DS.

Sounds a bit like my 16 year old DD with inattentive ADHD (ADD) and learning difficulties with non verbal processing

From the nhs website on ADHD:
The main signs of inattentiveness are:
having a short attention span and being easily distracted
making careless mistakes – for example, in schoolwork
appearing forgetful or losing things
being unable to stick to tasks that are tedious or time-consuming
appearing to be unable to listen to or carry out instructions
constantly changing activity or task
having difficulty organising tasks

Related conditions:
sleep problems – finding it difficult to get to sleep at night, and having irregular sleeping patterns

Hope this helps

The ADD which is inattentive type can indeed still present with a child who has the ability to concentrate...it's called hyper focus. DD can spend hours drawing or crafting but ask her to learn a list of spelling...not a hope in hell.

She can learn the lines for a play in an incredibly short time though...the ed psychologist said it's because she's interested in those things...if there's no interest then there's no focus.

In terms of her general behaviour...she's passionate and has a strong sense of justice...popular and lively...funny and creative but temper wise....wow. Don't want to cross her. Her desk and room are in a state of chaos.

Thank you, PaddingtonPaddington.

Out of that list three apply to DS:
making careless mistakes – for example, in schoolwork
appearing forgetful or losing things
having difficulty organising tasks (this is a big problem)

One sometimes applies to DS:
appearing to be unable to listen to or carry out instructions
(Although it's more that he carries out instructions in an odd way - he can be told something quite straightforward which somehow ends up complicated. Sometimes there's little relationship between what he is told to do and what he does.)

Two don't apply to DS:
having a short attention span and being easily distracted
being unable to stick to tasks that are tedious or time-consuming

And one is the complete opposite to DS:
constantly changing activity or task
It's actually an effort to get him to change activity - when he's in bed he doesn't want to get up, when he's up he doesn't want to go to bed, if he's reading we have to shout repeatedly to get him to come down for dinner. He sometimes hands in homework which he's clearly spent hours on, even when less effort would have done. He can be completely engrossed in a book, or a film.

FortunesFave

.the ed psychologist said it's because she's interested in those things...if there's no interest then there's no focus.

This is DS

I'm surprised they didn't flag ADD with him. Maybe it's because he's a boy and they're 'usually' thought of as having the hyperactive type.

He's just got a diagnosis of an "undiagnosed learning issue" At the time, because he was an advanced reader, and he talks confidently and fluently, they felt that he would cope. But he's really not coping now, and I'm worried about his mental health as he struggles with stuff that seems straightforward to most of his classmates.

Plus I often get frustrated with him, even though I try not to.

An example - his class had been studying a poet. They had an end-of-module essay. DS wrote in his homework jotter that they essay was on "the poem on p70" However it was actually the poem on p17. The poem on p70 was by a different poet, and not one that they were studying. When he started it, it didn't occur to him that it was odd that the poem was by a different author. He put a lot of effort into the essay - it was much harder for him, because he had no notes on that poet! His teacher was stumped - she said that it was an excellent essay, but she couldn't give him a pass for the module, when he hadn't produced an essay based on the module. She gave him an extra week to write the correct essay. But he had to do it on top of the following week's homework, so it was a struggle.

Neither his teacher nor I could understand why the fact that the poem wasn't by the poet they were studying wasn't a clue. He got a B for the second essay, when the teacher thought that he was capable of an A. And to get that B, he'd spent three times as long as anyone else in the class, writing two essays (one without class notes) where everyone else just wrote one.

He sounds so like DD (and me by the way...I suspect I have similar issues to DD) I over-complicate things all the time. Give DD or me something simple to do and we'll look at it from all angles and then choose the wrong way. The right way always seems to simple for us.

What is his passion OP? What does he love above all else?

For me it was writing...ironic since I am probably dysgraphic too. My writing was illegible and I failed everything.

I did however get into one of London's top drama schools and it was there that my writing came into it's own. Touch typing was a revelation and I was published quite soon after graduation. I'm now a copywriter and have had my fiction published in a number of magazines and in one collection.

What I'm getting at is that whatever he loves doing, he'll probably excel at given the right path.

When I say "he's just got a diagnosis of an "undiagnosed learning issue" I mean "he's only got" not "he's recently got."

He was diagnosed with the "undiagnosed learning issue" six years ago.

He loves stories - written or filmed or as part of online games or RPG.. And he writes stories. He's very imaginative and he's also very empathetic.

He's very witty and funny and good company. He's very loyal.

At school it feels as though he keeps going through the same process. He gets a new teacher, they're surprised he gets extra time in exams, he underperforms, but the teacher doesn't see the whole picture and thinks it's a one-off misunderstanding, or a single mistake, they think he's failed the test because he didn't pace himself, but they're sure next time will be ok, but it isn't. Then they start to agree there's something wrong, but by then it's the end of year, and he's starting over with a new teacher, who reads his notes, but thinks that can't possibly be right, such a bright child...

What grades did he get in GCSEs? I'm sorry I don't know the system as we live in Oz now and we left when our kids were little.

I'm just trying to ascertain what might be a good path for him...he CAN get to Uni if he really wants to but will, as you know, need a lot of support and it might take a bit longer than other kids.

Having said that, I left school aged 17 and worked three days a week whilst writing fiction...I was published by age 23. Sometimes, you just have to make your own path.

We're in Scotland, so Nat5s rather than GCSEs. He didn't do well, but the school think he could still pull it together, so they've let him progress despite his results. Each failed exam seems to be treated as a single failure "He could have passed, but he wrote far to much for one question, and didn't have time to finish the paper" "He could have passed, but he revised the wrong topic" "He could have passed, but he thought the exam was next week, realised the night before, tried to pull a revision all-nighter and was falling asleep over his exam paper"

FortunesFave, if you don't mind me asking - do you have techniques to stop your life becoming chaotic? You said that your daughter's room and desk are in a state of chaos, and this is DS, too. We have to make an effort to stop him spreading chaos into other rooms....
He has what could potentially be a lovely room, but it isn't lovely.

It seems as though there are a few things which would make life so much easier, which he's being told, over and over again, but which aren't sinking in.

E.g. If it's Monday, and you have homework due in on Tuesday and Thursday, do the homework that's due in the next day first.

In an exam, look to see how many marks a question is worth. Spend longer on an eight mark question than a two mark question.

When tidying your room start by making your bed, emptying your wastepaper bin and carrying all dirty mugs and glasses to the kitchen. Don't start by piling up the mess "to sort" and then realise you don't have space to sort it.

I just want him to be happy, but he's becoming increasingly down and anxious. It's not just school - he struggles to organise his social life, too. He's polite and kind and if he realises that he's annoyed or upset someone by turning up late or by forgetting something, he feels awful.

Visual reminders work well...a white board which you check will help. On it and with him helping, write down all homework that needs to be done.

Draw a line from each homework down to the day of the week it;s due or similar. Make it very clear and don't clutter it with reminders for anything else.

One board for homework...another if needed for other stuff.

And lots of reminding from you. And checking. It's annoying and hard at times but it's now that it counts and he will probably improve as he matures.

Another thing is the app Audacity which is a good system and has lots of features for reminding...that will help with the social stuff. He may need to set more than one reminder for things. So imagine he has a date on Friday night at 7.00pm

He should remind himself of this on Thursday evening...and then at midday on Friday and then again at 5.00pm on Friday.

Repetition helps.

Tidying...I got DD a clothes rack. She can see all of her clothing in one go which stops her windmilling through the drawers...I have to help her re-hang still but it's improved.

I got her two baskets...one black and one white. The black one is for dirty clothes and the white for clean which has to be put away.

White being a "clean" colour helps her.

Over-complicating things...like exam questions. Tell him to read and read again...and then once more each question.

But above all, try to get him to see that as my DD's psychologist said, it's often the smartest kids who have these issues.

Sorry, this sounds like an obvious question, but have either of the educational psychologists formally assessed your ds for dyslexia? His story sounds very much like my dd:

Very bright, very early reader, but as time went by she struggled to perform in school as expected. Verbally amazing but struggled when up against timed conditions and hand writing answers.

Very messy room, bag, desk, unorganised. Struggles to sleep. No concept of time (but always just catches trains as opposed to just missing them :)) Struggles to follow simple verbal instructions. Weirdly excellent spelling.
Did well in GCSEs with help of a couple of tutors, but struggled with essay subjects, despite amazing writing under non-timed conditions.

Started new 6th form and diagnosed with dyslexia: Very low processing, (which leads to v slow handwriting). Very high IQ. Laptop helped massively - is your ds entitled to use a laptop?

Thanks, daisybank - dyslexia was specifically ruled out both times. Your daughter does sound like DS, though - apart from the "catching trains instead of missing them" bit :)

DS uses a laptop, which has sorted the problem with his handwriting, and also the problem with his spelling - his spelling is poor, but when he sees it written down he knows if it's correct or not.

He's not entitled to another assessment, because he's a high achiever in some areas. DH and I would go private if it would help, but DS doesn't want to be "labelled." I wish we'd pushed it and gone private when he was ten, to get something more than "a diagnosis of an undiagnosed learning issue."

My DDs teachers specifically try to notice if DD is looking at them when they're giving instructions to the class. They also go over them with her again. I'm sure it's hard work but they say they've got into the habit of it now.

The system is possibly different in Scotland, but I would have thought that your ds could get another assessment at 16, when the last one done was at 10 (when presumably he was in a different school?) Also in England you need a new assessment at 16 anyway, which covers you through Uni - one from age 10 would not be recent enough for uni.

I get not wanting to be labelled - our dd felt the same, but then was hugely relieved when she eventually did get a diagnosis for something she had been silently struggling with for years - it helped her self-esteem and to be honest it helped us as parents too.
She's always said she found writing hard, but teachers had labelled her as lazy, a daydreamer, or a perfectionist, but never had suggested processing /dyslexia.
Once she knew "she was right" it boosted her self-confidence massively. Plus the assessment report gave a huge amount of info as to how teachers should manage her needs as well as how she should.
My dd was recommended to get copies of lesson notes in advance of the lesson. Teachers asked her first if she was in a group, otherwise by the time the teacher got round to asking her opinion, dd had forgotten the initial question. If a teacher forgot and asked her last, dd would just say '" I agree with x" as too much time had lapsed between the teacher asking the question and her turn.

One other point - have you ever seen the dyslexia assessment they did when he was 10? If not I would ask for a copy and check exactly what they tested him for. They could have missed something.

We didn't get a copy of the assessment they did when he was ten. We had a meeting at which they went over it. By recollection it was described as an "undiagnosed learning issue" because the educational psychologist hadn't come across anyone like DS before, but the 5 year gap between reading age and spelling age was enough to confirm there was a problem, probably with the way DS processes information. I think he was tested for other things, and his results were all over the place, but the reading / spelling gap was the most important one.

I don't think the chaotic sleep was included as a problem because it was less of an issue then. He had a big issue with sleeping at night which happened after the assessment (long story). Our GP has offered tablets to try to get him into a routine of only having one sleep a day, at night, but DS refuses to take tablets.

DS also has a couple of mild phobias / anxieties, which he deals with by having a routine. None of these are odd or time consuming, but he's been asked before whether he has OCD.

I'm keen for another assessment, with more focus on the bigger picture of poor sense of time, poor time management, chaotic sleep and inability to pass exams, despite knowing the subject well.

I started this thread partly in the hope that someone could suggest a diagnosis which I could discuss with DS and get him to agree to an assessment. The ADD is interesting, I hadn't heard of that before.

If they mentioned that there are likely issues with the way that your ds processes information, then that in itself is potentially part of a dyslexia diagnosis. Maybe they didn't do a full test / screening or maybe how they diagnose dyslexia has changed in the last 6 years, or it's different in Scotland. But either way, your idea of trying to get him to agree to more testing sounds like the best course of action.

Your ds sounds just like my dd in so many ways and from what you say I would suggest similar to her re a diagnosis:
Her main issues are low Phonological Processing and an almost non-existent working memory. Both of these come under the dyslexia 'umbrella'.

There are very specific tests in a dyslexia assessment to confirm both of these issues.

My dd's processing issues were described by the assessor to me as like when you get the 'spinny wheel' on a computer screen when too many programs are running at once, and it grinds to a halt - a bit like my dd's brain: When asked to write a paragraph, also think of spelling , sentence construction, punctuation, relevant vocabulary, recalling info from her long term memory and getting it all down on paper, in the right order, she just can't cope and she gets her own 'spinny wheel' in her brain!!

Her working / short-term memory issues add to this problem and she forgets instructions or just can't process them.

The laptop screen becomes her working memory and as the term "word processor" suggests, it helps her jiggle around her work cutting & pasting until it's all down and reading correctly, in the right order.

I suspect she has ADD issues as well, but at this stage I'm not sure what good another diagnosis would be for her. She also has some unusual anxiety issues...

I hope this helps and I haven't been too pushy - I feel so passionately about this issue and when I look back at what my dd went through pre-diagnosis I still feel sad and wish I could have helped more. I wish I'd pushed earlier for 'an answer' but I just believed what the school told me. So when I hear about others in a similar position I ramble on for a while...😬

Hi OP
@JanetHorne
Sorry to stumble across this much later...
Did your ds ever have a cognitive assessment?

I think your ds sounds like a fairly classic case of executive dysfunction. This could be related to visual-spatial learning difficulties or it can be related to autism or ADD, or dyslexia, processing speed etc, or it it can be just on its own. I would place a significant amount of cash on you recognising executive functioning difficulties if you read up.

I would get yourself a copy of "smart but scattered teens" and read it.

I have just come across this thread as DS13 had an initial assessment yesterday with community paediatric doctor.
The doctor suspects ADHD and ASD - waiting now for BOSA and school reports.

He is so like many of PPs DC and your DS @JanetHorne - it's almost a relief to see the things he finds so difficult, talked about.

Not much else to say really but I hope you and your DCs are all coping ok

Thank you, @daisybank2, @RosesforMama, and @JamieFrasersSassenach

Roses, I don't think DS has ever had a "cognitive assessment" He's had two referrals to ed psych, one at 7, one at almost 10 and that's been it.

We were willing to go private, but DS didn't want to be labelled, and was resistant. Things are difficult enough when DS is co-operative, but impossible when he isn't co-operative and so we didn't pursue that, though I wish we had now. Although I'm not sure we'd have got anywhere, without DS being willing.

A teaching friend from Uni is a SN teacher. She lives in England and hasn't met DS. She offered to discuss things with him via e-mail. She concluded that he is intelligent enough to "mask" for short spells of time, which makes it difficult to diagnose him. She also said that she'd guess that if he did the Myers Briggs test, he'd score high N and low S. He tried the test and that was what he got.

We're still willing to go private, but DS isn't convinced he wants to be assessed.

I have ordered the "Smart but Scattered" book.