Parents who refuse to pursue a diagnosis for their children

[emilybrontosaurus]

I am just wondering if teachers or others express a child may have neurodiversity and the parents just sort of sit on that information - why? And could this be considered neglectful?

@Ohthatsabitshit Someone more knowledgeable will probably answer your question, but would a child who is dyslexic, for example, fall into the SEN category? They need educational support, but they’re not on the autism spectrum.

Dyslexia runs in my husband’s family but those diagnosed with it haven’t needed other types of support.

SEN isn’t another way of saying autistic though @BruFord. To me dyslexia is very clearly a SEN. Logically I would say not speaking the language that is spoken in your school was too but I seem to remember someone saying that wasn’t.

They won’t even refer my DD because of the possibility of ND 🫠

So clearly there ARE fairly serious negatives to dx like being refused access to therapies. I’m not sure but is that because those therapies aren’t suitable for autistics or just ableist? To me it would appear to be the latter.

I'm guessing that it was because the therapy wasn't suitable for those who are autistic rather than them being ablest. I don't think that there are enough therapists around who specialise with working with those with autism.

Its a bit confusing.

Not every disability means you have educational needs.

Not every special educational need is a disability.

It it's basic level SEN just means a child needs education provision over the ordinary stuff in class,and it doesn't have to be long term, someone can catch up or grow out of it. But lots of people use it as shorthand for longer term diagnosed conditions that require support, but maybe they don't feel a disability, especially if tge only impact of the condition is educational.

Dyslexia is always under SEN. Dyslexia is what makes up the majority of SEN in mainstream schools. If a child is under SEN it doesn’t necessarily mean that they will be getting daily support, it’s more than anything so the SEN department know of who might need support, and support is (ideally) given based on need. Support will always be prioritised to those who need it most so unfortunately many miss out, but are still classed as SEN.

It does make sense that's why I use the terms high/medium/low support needs.

If a child is under SEN what does this mean? I think it must be a colloquial use of the term because I have heard others say this but don’t understand what’s trying to be expressed or if it is an actual situation??@Frowningprovidence

I think they are trying to express that their child is flagged up to the schools SEN Coordinator and on thier radar. This normally means that they have some extra/different support than the class teacher would just expect to do as part of thier day to say support.

Special Educational Needs xx

One of the things I have found helpful about DD having her diagnosis is the attitudes of professionals have really shifted. It's gone from a patronizing 'Mum feels that...' to 'X has ASD and DCD and support needs have been identified as...'

Obviously you should get the support based on need. You really don't though. Having the DX smooths the path through support services. Dd is very 'obviously' autistic but even then we had to chase and chase for even basic accommodations that were ND-affirming (no, it's not a good target to force her to make eye contact).

I've also found it helpful that some of the things I blamed myself for (e.g. her not being able to play properly) were nothing to do with me and I didn't just need to try harder.

I'm a governor at a school where we have an improbably low number of dx for kids who demonstrate high need. In some of the communities we serve there's a huge stigma around ND, SEN and other disabilities which means parents are very resistant to any suggestion. Which also means no EHCPs (because that would mean admitting there was a problem) which means lower funding. Which means all the kids in the school suffer because we still need to do the provision. I suspect that's something that isn't uncommon.

Also, while we are supportive parents one day we are going to be dead parents. Dd will be a disabled autistic adult and an autistic elderly person. I see her DX as future-proofing for when we are not around (to some degree).

Yes, it was the “under” that I was trying to understand. I think maybe, “is recognised by school as having difficulty “?

I’m not sure what future proofing it could provide, but I think all of us can empathise with the anxiety.

It’s a circular mess!

it really is!

DD10 hasn’t been able to manage a day in school since March time! 😓

Oh sorry 🤦🏻‍♀️ yes- it means the school will have a education plan in place to help support the child in school, like an unofficial EHCP, for my daughter it ment small group activities, interventions for her maths/english etc extra time to process/regulate between activities, visual aids and they allowed her to have a teddy from home during lessons to help her regulate/keep her calm for her sensory processing disorder xx

No I mean it's obviously not a protective amulet (and who knows where services will be in 50 years time) but it's one thing we can put in place for the future (and in fact now, e.g. offered a covid jab). It's unlike dd will be able to advocate for herself properly in the future. It's not anxiety, it's practicality.

@Dinnerplease thats interesting, about the Covid jab I mean. Are you sure she’s receiving it because of her autism or does she have other conditions as well? I didn’t realise autism was a qualifying condition.

Sorry to jump in but yes it is because of the autism, both my autistic kids get offended the covid jab- my other 3 don’t, neither has any other conditions xx

My ds is quite obviously neurodiverse. It has been raised I think twice by teachers throughout his school career as they have noticed certain behaviours etc. I believe myself and my brother to also be neurodiverse but neither of us has a diagnosis. We are all intelligent people, my brother and I are successful in life and my son does well in school, has friends and does not require extra support, educational, pastoral or financial. Had he ever needed it, we probably would have pursued it and we have discussed it with him and even asked his opinion on whether he feels a diagnosis would be helpful. I think it’s different if your child is obviously struggling. I can’t think of anything school could provide that would benefit ds.

@MrDarlingtonsPie I think your situation highlights quite well that if people weren’t fed the idea that dx is necessary to access support they might choose not to dx at all.

To me that means some parents don’t see dx as a route to better self esteem and better outcomes. They may of course be totally wrong but my tendency would be to believe parents are best placed to make decisions for their own child.

If we shifted the goalposts to where they should be legally and removed any question that a dx was needed to access support would we see a significant drop in those seeking dx? Is this lack of access without dx actually fuelling the demand and forcing people to embrace a medical route and understanding of themselves?

Yep, as a PP said, definitely the autism re. covid jab. No underlying conditions. Thus seems to be national as well speaking to people elsewhere in the country.

It makes sense- less likely to be able to adequately communicate you are unwell, isolating and masking up more difficult and more likely to find illness very distressing. Mileage will vary of course but NHS England can't check the flavour of everyone's diagnosis.

Dyslexia is always under SEN. Dyslexia is what makes up the majority of SEN in mainstream schools.

Really,where did you get that info from?