Diagnosis for support or 'Labelling'

[MoederBok123]

Hello All,

So I was diagnosed with neurodiversities in adult years and have found 'knowing' helpful to better understand my quirks and struggles. Now, lets talk children - There have always (since pre-school) been mentions of 'dyslexic' traits in my son, and various people have picked up on 'quirks', but I'm conflicted about formal assessment. My opinion is, in school children should be monitored and aided with all and any struggles. I was recently asked to take my son to the GP for diagnosis because he is very distracted and cannot sit still. He is 7. Because obviously the GP wont refer for behaviours, I had a meeting with the SENCo.

I'm not convinced he needs behavioural assessments. I keep saying that if he didn't find learning and concentrating so difficult, he would engage better and thus be more stimulated by what he is meant to be doing. The SENCo agrees that we should implement supports and reassess these supports every few months, but I fear teachers focus more on 'annoying' behaviours than the child's academic struggles. Anyone else finding the system so frustrating? I don't think my son is busy to the point of needing diagnosis but I do feel like 'labels' make people more inclined to want to help the child with their struggles. Things like dyslexia are more of a silent struggle, so whilst I believe learning should be schools focus, they are more fixated on behavioural issues. The SENCo is however requesting visual assessments due to some academic struggles after I described some of the things he talks about like moving words, high contrast causing rainbowing and warped scenes suggesting the 'Alice in wonderland effect'.

Advice or golden nuggets from anyone would be uber helpful? TIA x

PS. Fidget toys etc help with social anxieties and boredom but are too distracting in class. They have now agreed to a doodle pad in class which is helping a little.

I’m not in Uk so I don’t understand the school system. Where I am supports are needs based rather than dependent on a diagnosis, so at the schools discretion to an extent.

But I have still found tgst the ‘label’ makes a difference - that people are much more open to accommodating ds, when it’s viewed through a frame of autism, rather than as an NT.

You mentioned fidget toys and it’s a great example. It’s very important to be able to fidget, stim etc because movement is a part of emotional regulation and helps learning. And we need to be able to move in a way that works for us. Doodling is great IF it’s his thing. But if he needs a fidget, doodling might not be enough.

I would push back hard on the concept that NT distraction is a reason not to meet a child’s needs. Frankly it’s lazy, or poor training in teachers. One of the biggest obstacles to ND kids accessing accommodation is their need to fit in with peers.

Some classrooms are set up for movement breaks - eg having a jug of water at the back so you can get up for a drink at any time, toilets you can access whenever, go pare your pencil over the bin. Initially everyone is up and down all the time but it quickly settles down once the novelty wears off. And then kids who need to move more can do so without drawing attention to themselves.

Just asking the kids to think about whether a fidget helps them concentrate or is a distraction can help them self regulate. Learning how to learn is an important part of the curriculum too.

I’ve always noticed that the teachers who do well with the SN students are usually great teachers overall. The ones muttering about distracting the other students aren’t holding their attention to begin with

I moved my son to his current school because its a small school of under 100 students. Before that he was in a huge school and I knew they wouldn't cope with his needs and land up labelling him as 'naughty'. He already had various allergies so I just felt it better to go against government school allocations and move him.
The school is great on the most part but they are still in need of adjustment. For example, the teachers give children verbal messages to bring home to parents. At 7 years of age, this is not appropriate. Add a distracted 7 year old and messages will never come home. I suggested allowing my son to write the message down in a note book and the teacher said no because it will single him out. I added that most Moms in the group also want a note book system because they are fed up of missed or skewed messages. then the teacher said no because coping messages down from a board cuts into learning time. Then, you can imagine how it went down when asking the teacher to communicate with us directly went!
It's a battle of wills! In the mean time, children are being forgotten. I don't believe labels should be needed but am fast realising that labels are far more likely to get the child the help they need... but in the UK, the diagnosis process is so messed up because private diagnoses are not accepted as NHS recognised, and getting an NHS diagnosis takes years of waiting lists and only children with severe behaviours get through. So, a child like mine would not be looked at because his struggles are effecting him more than those around him, so are not annoying others enough to be seen as important.

On the up side, his small school are willing to help without a label so hopefully when he gets to senior school he will be better equipped to manage and self-regulate.

Wow that teacher sounds like a treat .

What ND did the senco discuss with you? And what have the school got in place so far? And most importantly is it working?

I agree it's rubbish the school is focused more on your DS distracting others, however hopefully as a result he will still get support in place. Go for the private diagnosis if you can afford it anyway, even if the school does not recognise it you can learn how best to support him at home and he can learn techniques to help him at school too. Would his teacher really not let him use a ruler to stay on the line?

I'm just shocked the teacher won't let them write notes! I don't know many 7 year olds ND or not that would have been able to do that!

Just re-read private diagnosis not being accepted by the NHS.

This is not true at all. I have a private diagnosis, and the GP has taken over so I can get my ADHD meds on prescription. I am now on NHS waiting list for my yearly review but I will go back to private if needs be until they can take over that part of it.

You just need to make sure you use a company that is associated with the NHS

Will your child be with the same teacher next year?

@puddleduck234 That is very interesting. I went private for my assessment but as part of my post-grad. So whilst I paid, I didn't really get given an choice of different companies. I'm so greatful that I decided to go back to Uni later in life because I really don't think I would have coped years ago and am almost certain my struggles would have been overlooked. Because they were recognised, I was finally seen for my intelligence and not as some dumb person who sends all her time in Lala-land. Seeing my son now being treated the way I was is rather triggering.
They suspect Inattentive ADHD and SpLD for my son. Fortunately I am very clued up on how to support him and still learning more as I go but I think this is part of the problem. Because I've been helping him a lot at home, his struggles are less obvious at school to an untrained eye. I now have the issue that he is missing out on that child freedom because of the extra work we have been doing at home. I am going to have to stop with the academic stuff at home so they can see his struggles more at school and see where they should be supporting him there. As of 2 months ago, they have some break out activities for him to do. These involve more interactive learning when he struggles to concentrate in class and he is having one to one time for his reading and spelling - Although that teaching aid is leaving the school now so I'm not sure how the gap will be filled next year.

@Trivester No, my son will have a different teacher again. My son has had such an inconsistent start to school. It's been 5 different main teachers and quite a lot of TA shuffling in his 3 years of schooling. Then, there was Covid. He, and many other children his age were taken out of school in their Reception year with the first lock down. The 2nd and 3rd year then had various school closures to Covid cases and more lockdowns. I know this has caused lines to become blurred on development too. He is due to meet his new teacher next week so I just hope we wont be having to start from scratch again and his teacher will be ND trained and aware so she knows what to look for and how to support properly.

Hopefully the new teacher will be an improvement on the last.

I think that being able to speak first hand about inattentive adhd from the perspective of having a post grad qualification is very powerful.

I know exactly what you mean about the support you’re giving at home masking the problems in school - it’s so frustrating. But you’re exactly right that the school needs to step up to support him precisely so he can have fun and downtime at home.

I often feel that as parents of SN dc we are always paying it forward, advocating for change and acceptance and awareness that our own dc don’t necessarily benefit from. I was involved with autistic dc 20 years and in some of the parent driven campaigns for their educational rights, and I appreciate the battles they fought, that we don’t have to. It’s just so wearing in the thick of it, when you can’t see enough progress.

But back to your original question - Yes I think a diagnosis will help, because as well as the label, it will also come with specific recommendations from a psychologist/psychiatrist/occupational therapist and that will also carry more heft than “mum thinks”

Even being able to say he’s on a waiting list can bring a bit of gravitas.

In the UK, referral has to come from the schools now, so it makes it very tricky when the school aren't focusing on the bigger picture. Some people go through it for years and never get anywhere because they cannot afford to go private. You used to have multiple routes of referral but it all changed. Knowing now that there are NHS recognised private sectors (thank you for that information @puddleduck234 ) I will look into going private. Then, if the support doesn't improve in school, I can take matters further.
I so fear that he will be left struggling. In my case, my obsessive thinking and inability to see the grey between right and wrong left me striving for perfection for fear of being seen as 'bad' all the time. That gave me drive and determination so I learned to find my own systems. Like in school, I would ask teachers if I could catch up in empty classrooms during break and lunch. At home I'd be in my bedroom all evening to make sure I didn't lag behind in school. Luckily I love learning so it helped. However, not all people are the same and many get lost, quit or turn into self destruction. My sibling took the other route and gave up on her dreams to become a scientist. It was such a shame because she is super bright about her passion. she would have gone far with the right support.

In the mean time, I'm going to put feelers out for possible extra supports that can free my son and I up to have fun together. I don't want him to see me as always pushing him too hard or making him work instead of having fun. Thank you so much for helping me process.

It was clinical partners if that helps. I think it does depend on the GP, as my first GP pretty much said "ok I'm not going to argue with a psychiatrist" and it was very easy. Then I moved areas and the new one is insisting I go through the NHS system. But has agreed to prescribe my meds as long as I go back for yearly reviews with the private psychiatrist until I'm on the NHS system.