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?

That’s not my experience and would be a fairly ridiculous way of assigning support given the breadth of presentations in some dx. What part of the country is allocating support in this way? What support are you entitled to with what dx?

For comparison, you could look at other people's children?

The problem is that, without a dx, the child's behaviour is waved away as bad parenting, the child being "feral" (source: previous poster), the child being lazy, etc and the school can therefore claim that no support is needed. With a diagnosis, the school can no longer tell these horrible slanders about innocent children and are forced to acknowledge that the behaviour is not a choice and the child's needs are genuine.

"It’s difficult when it’s your first child and you don’t have a basis for comparison."

Absolutely. All I will say is that if your child is neurodivergent, it gets easier as your child gets older and you start to observe them with peers (eg at play dates, birthday parties) and see how they might struggle with some things that their peers don't.

At 4, everyone told me it was too soon and to wait and see. At 5, we paid for a private Occupational Therapy assessment - much cheaper than a full autism assessment and very helpful indeed. The report identified some sensory needs and made recommendations for things to do at home and school. By 6, I was more sure than ever that it was probably autism. Then I found out about Right to Choose, got the GP referral, and DS was assessed and diagnosed shortly before his 7th birthday.

I didn't think we would qualify for DLA - he is so-called "high functioning" (he masks his difficulties, he still has them, and needs a lot of support at home) - but we got DLA. I'm not convinced we would have got it if it hadn't been for the medical evidence ie the diagnostic report. It's supposed to be based on needs not diagnosis, but if your child masks and school insists they are fine, how are you supposed to evidence those needs if not with a diagnosis?

The DLA provides the option to pay for support that is not available on the NHS, private OT sessions for example, 1-2-1 swimming lessons because group lessons are too overwhelming, or specialist therapy for autistic children.

This was me and my parents as a child. Their reasoning was that they could beat or punish it out of me and that I was only pretending it for attention. my sister had a kind of mental breakdown as a teenager and they basically told her to start acting normally because she was making the family look bad. They were very big on what would the neighbours think .

I wonder if this kind of attitude is quite common? I wonder If it could be that for a lot of people. My family were very religious and I think it was linked to that too.

Again that’s not my experience, and there are other ways of demonstrating need than dx (as most people who have done it will recognise).

Sorry that happened to you @GoldenGuinea

@selffellatingouroborosofhate my definition of identity is different; I'm probably misusing the word as unable to think of an appropriate way to describe being Autistic as a person's being and not just a condition. You will know how to convey this better than I do.

Maybe a diagnosis would trigger SEN help? More than available in class as the teacher simply won't have time?

Thanks so much. It was hard to live with and the self doubt still tries to grab me from time to time, that I must be faking. I know I'm not though.

You won't even get on the waiting list unless you meet assessment criteria anyway.

People can't face the thought that personality traits that they have could be signs of issues in their children. It means that they may have that issue. There are also ripple effects: why did no one notice this in me and get help for me; has this affected my life etc

I know several people who say that the traits in their children are not an issue because 'I was just like that' or 'My partner is just like that' They see this as a sign that these are normal kids rather than neurodiversity being an issue in themselves or their partner.

My family are dispersed across the UK only one of four children had managed to access support without diagnosis.

The other three are told the support is only available if diagnosis.

It's pretty much the same in Ireland. The official line is x but the lived reality is no where close.

You will know how to convey this better than I do.

Probably not.

my definition of identity is different

I've come across identity in the context of "I identify as a woman/man/non-binary" or Rachel Dolezal identifying as Black, with that identity being subject to change over time and that doesn't seem to me to be fundamental to who someone is in an immutable and biological way. Autism clearly isn't a choice and, contrary to the naysayers earlier on this thread, there are brain differences recently discovered: https://medicine.yale.edu/news-article/a-key-brain-difference-linked-to-autism-is-found-for-the-first-time-in-living-people

@selffellatingouroborosofhate yes this makes complete sense. I watched that documentary regards Rachel Dolezal! Identity is the completely wrong word, I can see now. Thankyou for the explanation.

I will definitely read that link. I read Temple Grandin's book recently. She cites studies in the USA showing demonstrable differences on scans. I can't understand why this isn't being explored and investigated further. It was fascinating.

Edited to say just read the link. Amazing and I hope this takes off and informs positive change.

I’m unsure if this is meant to be sarcastic or not. Assuming not, I’ll answer genuinely and explain as clearly as I can that children tend to be different in and out of the home (as indeed mine is) develop at different rates, have different strengths and areas to develop, so comparing my child to someone else’s child is unlikely to give me a like for like comparison.

I’m in 2 minds.

A few weeks ago I’d have said why wouldn’t you pursue a diagnosis to ensure your child gets all the support they’re entitled to and so that they have language to understand themselves.

However, after getting my own diagnosis recently then telling work and then mysteriously getting suspended for slightly spurious reasons less than 3 weeks later, that it took them 3 weeks(!) to tell me those reasons properly - and line managers comment regarding the autism of - oh well I didn’t spot that at interview comment - I’m really not sure the label helps you crack on in the real world. It currently has so much stigma and negativity attached to it.

I am continuing to peruse a diagnosis for my
DD who has just started primary school, while my own life falls apart. Perhaps hers won’t.

My best friends are in denial and have chosen not to get their son tested. He is clearly autistic. He's 21 now and could have had a better and happier life.

Watching other kids was actually the thing that made me clearly see. It wasn't until about age 8 though; in a group setting in the playground at school, watching play and interactions for about 30 minutes. It hit me like a tonne of bricks.

Would it not be more practical to address the incorrect processes being used than present the idea that diagnosis will provide support which I don’t think can be true.

It would but it isn't likely to happen anytime soon. So parents are forced to work blind, hope to come across someone who is further down the road.

I have spent over twenty years supporting my cousin through the Irish system. Which like the UK system is very much location and school specific.

Yes Neurodiversity is a social justice movement that describes a range of neurological differences as normal variations of the brain, including autism. Autism is a condition that falls under the umbrella of neurodiversity, which also includes other conditions like ADHD and dyslexia. Take it to mean that I am referring to neurodiversity, autism and the range of associated conditions which fall under the umbrella term of neurodiversity. I am not minimising anyones difficulties or challenges. I am speaking from my own experiences and my opinion based on my experiences/

Thats a great way of explaining to folk thanks for sharing !
I would say it isnt the common understanding of the austic spectrum in the dealings I have had with various services and professionals. But I agree with the more modern way of understanding it

It just makes almost everything make sense doesnt it. I can really see why they used a jigsaw piece as a symbol for autism awareness because for us, it really was the missing piece of the puzzle

I've been very emotional since her diagnosis. I am hoping I can heal a part of me by watching/helping her flourish.

I have an ND child of 7. Diagnosis was essential for us to fight to get him in to the correct placement as mainstream was not an option for us even though LA would happily have placed him at mainstream if we asked
I have a relative whose DD is clearly autistic but they don’t have the knowledge to know this (they think possibly adhd or she’s just young etc). I think some people are stuck or in denial and think it’ll just right itself or just don’t have the knowledge in that area. We didn’t know until DS was age 2 as he was first/only child and we didn’t have the knowledge until then. Once we did it was glaringly obvious and the fight and hard work began to ensure his needs are met.