?DCD - struggling to get diagnosis

[NT2018]

Hoping anyone has some advice either way!

DS7 has struggled with getting his words/thoughts on paper since starting school. A recent Ed Psych report showed extremely high cognition but average processing speed. He does not show his cognitive ability at academic work at all.

OT report has found gross motor deficits, fine motor deficits, low muscle tone, hand hypermobility and he now needs SALT, OT and Physio!

Both reports say he would benefit from extra time in tasks and tests.

He can use cutlery, do up buttons and write but is super slow and he avoids doing any or all of these by using distraction strategies.

He ride a bike, swim but completely uncoordinated and he’s been stuck at stage 3 for past 3 years, can’t throw, can’t jump and runs like a newborn lamb. His confidence is starting to take a hit and he says he knows he’s not like the other kids.

He meets 3 out of 4 criteria for DCD diagnosis as they don’t feel his daily function is impacted enough but in the same breath they say, due to his intelligence, he is probably clever enough to come up with ways to make sure he can get just get by with activities.

We don’t need a diagnosis as we’ll try and start all these therapies anyway but it does feel off to me that he needs all these interventions for supposedly disparate issues.

A diagnosis would be super helpful for the school though. They can’t get their heads around this long list of deficits that don’t fall under a global disorder and aren’t interested in accommodations to support him to show his full potential as ‘there’s nothing the matter with him’.

As his mum, I am sure that his issues with organisation of thought when writing is caught up with all the other issues that have been found but I don’t know if I’m way off the mark or what to do now.

Has anybody got an informed view or experience in a situation like this?

Thanks if you made it to this point!!

You could ask for a referral for a second opinion. If DS needs OT, SALT and physio, it is surprising the HCPs don’t think his difficulties significantly and persistently interfere with activities of daily living or academics.

However, support in school is based on needs, not diagnosis. The school should be providing support and making adjustments now. Request another meeting with the SENCO. Follow up with an email. If you don’t get anywhere, escalate it to the HT. If DS has SEN to the level he needs physio, OT and SALT, I would also be requesting an EHCNA. On their website, IPSEA has a model letter you can use.

We never got a 'diagnosis' for my son, but a report that showed that he was consistently in the bottom 1to 3 percent in standardised OT tests, so that was evidence that he finds things harder than 97 to 99% of pupils and needed help or alternative arrangements. The OT also attested that our son needed certain accommodations in school. E.g. the OT sat him a standardised test to measure writing speed and legibility, and because he scored in the lowest 1 percent, the OT attested that he needs to type in school. They insisted however to do 2 tests 2 years apart, at 6 and 8, to allow time for interventions, like extra handwriting classes in school, to show an effect (or not, as in his case). They also attested that playing rugby, hockey or football in school would be too dangerous and complex for him, as he scored in the bottom 2 percent for gross motoric and movement planning (a paed observed him catching balls, doing sit ups and trying to build a 'bridge over lava' with mats), so he needed to be moved out of P.E.. Did you get a report? We found it helpful to ask for specific tests for specific accommodations. In our case, the school contacted NHS OT services regarding advise on hand writing, and we said when we had the appointment that we and school need proof that he needs to type.

We got a private OT report for DS6 just before his 5th bday. He was on 5th percentile on standard OT tests and therefore would have qualified as having DCD - except that they don’t diagnose DCD officially until they are past their 5th birthday!

by the time we finally saw an NHS OT for the first stage of a formal diagnosis (age 6.5) he had been getting some (also private) help and was no longer on 5th percentile. So despite asking, NHS OT wouldn’t refer him on to a paediatrician for an actual diagnosis, even though they still thought he was impaired enough to warrant offering him various extra help, school visits etc.

In short, getting an NHS diagnosis is very hard and they will try to put you off. And schools are most likely to offer help if your DS is struggling to write (but not all kids with DCD have fine motor problems). Primary school can’t really be expected to help with running or swimming! But further down the line your OT report can hopefully show them that they need to allow DS to touch type, as PP have said. Good luck!

Movements such as running absolutely are under the remit of education. It is part of the reason why I suggested requesting an EHCNA, because the support OP’s DS requires is beyond ordinarily available provision.