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?

I know a few people who haven't pursued a diagnosis for their children who could have done. They had their reasons.

What's up OP? Are you considering what route to take with your own child or concerned about a family member?

Some parents do not want to put a label on their child particularly if there is no cure.

I know someone like this. Her child is quite clearly showing signs of autism. Her DD’s teachers have all flagged it, and she talks constantly about the struggles she has with her DD, but is adamant there is nothing wrong. I don’t really understand it. I have similar with my DS and have talked about how positive it’s been for us as a family to have that diagnosis and understanding now. It’s hard to understand why she wouldn’t want similar for her DD.

A diagnosis isn't the be all and end all.

The child should still be getting the help they need at school, so I absolutely understand why some parents don't pursue a diagnosis.

I’ve seen this a few times with other parents

I have a ND DC so I suppose I’m aware of the signs, but I’m not an expert and some kids are so ‘different’ that I can’t believe their parents haven’t picked up on it.

one woman I know with a secondary school age child still hasn’t even questioned the possibility her son is ND, but he is textbook autistic. To the point where I assumed she obviously knew this. Was shocked to find out he’d never been assessed and she had t even considered it.

I think people don’t want to face it. Possible because they are ND themselves?

Diagnosis of what? The parents who I know who have been this process for autism say if school are supportive the diagnosis can still take years and then they’re waiting years to start a specific parenting course. They’re isn’t a huge amount of support out there.

On the other hand there are some kids that absolutely need a diagnosis. Our daughter has autism, without her diagnosis i very much doubt she would be in her specialist school and would most likely be non verbal at the age of 6, even with a diagnosis and yearly assessments and ehcp weve had to fight tooth and nail for every bit of help.

I can still understand people not wanting a label, it happens with every condition, i treat people with cancer, diabetes, even arthritis that would rather carry on as they are or try avoid it.

Working with parents, a range of reasons.

Long term label and limitations on careers.
Denial.
Strategies in place ( parent and school) are working, so a diagnosis doesn't matter.
A diagnosis doesn't bring extra support.
Individual focus - know the child well, work hard to meet their needs through appropriate strategies, a more general label will water down their needs.

My parents were one of those parents:
They tried for years (I think he was 7) to get a diagnosis for my brother. They were told it was their parenting. He was diagnosed with Asperger's at the age of 14. (This was early 2000s so it was still diagnosed back then)
They believed there was more to my disabilities than "just" a visual impairment. I used to complain a lot about headaches and would vomit for seemingly no reason. They were told for years they were imagining it. It turns out I had epilepsy. I'm now undergoing tests because someone has finally decided there's more going on.

They didn't pursue an Autism diagnosis for me because of the above.

I find this incredibly aggravating because I used to work in higher education supporting disabled and neurodivergent students and it made such a difference if they’d got a diagnosis while of school age - it opened doors to funding and help.

There was a girl in my town like this. She was adamant that there was nothing wrong with her non verbal 4 year old , as was her husband. Eventually she had to give in and admit there was something wrong as none of the local primary schools would take her because they couldn't manage her needs. The child is in a special school now and doing really well. The father is still very deep in denial and claims these problems don't exist in his country

@emilybrontosaurus what benefits do you imagine come from diagnosis?

Fear, denial and lack of understanding in most cases I suspect. Many of these kids might go on to pursue a diagnosis as adults in their journey to understanding and self acceptance. I suspect many won’t thank their parents for their choices. Saying that, my DC has a diagnosis and it’s still a bloody nightmare trying to get support, so who knows?

I expect they have their reasons. I won't be judging them for making this decision.

Conversely to some of the responses here, I was identified by a GP as having neurodivergent traits as a child and offered referral to CAHMS for assessment, and my parents declined. I had a very difficult time through secondary school until my early twenties because I was constantly punished for symptoms of my neurodiversity and forced to fit a NT mould. This resulted in me running away from home, living homeless for some time, and alcohol and substance abuse issues.

Only now in my thirties, with a diagnosis I had to seek and pay for privately, am I finally able to recognise what an enormous impact it has had on my life. I honestly believe that had I had a diagnosis as a child when it was first identified, my school years and early adulthood could have been very different. I now understand myself, why I am the way I am, and have great tools to support myself, none of which I had prior my my formal diagnosis.

Of course, I think individual choice should be made on a case by case basis. There is no need necessarily to 'label' someone who perhaps shows some traits of ND but is otherwise happy and well socially adjusted, but if there are areas of struggle then a formal diagnosis can really provide great tools of support in these areas.

Oh I judge alright.

It’s OK to fear the diagnosis, and not want to have anything “wrong” with your child, but ultimately it isn’t about you, your internalised ableism or the stigma of autism (autism is so much more stigmatised than ADHD).

Refusing to get a diagnosis is like sticking your head in the sand. It won’t make your kid any less neurodivergent, it just means they suffer more through not getting the external support (or, crucially, the self-understanding) that a diagnosis brings.

Not to mention the fact that kicking the can down the road at primary school puts your child at massive risk of burnout/breakdown at secondary.

I was diagnosed in my 40s but I don’t blame my parents because they didn’t have a clue. But the ones who KNOW their child is ND and do nothing? They are failing their child terribly.

My dbro is 53. He is textbook autistic. Way back in the 1970s diagnosis was discussed. My mother decided that it was not in my brother’s best interests to get a label that probably wouldn’t lead to support.

She has second guessed this decision many times, particularly when he struggled with school, couldn’t get a graduate job, and had some measure of depression. But she was never in denial. And, like most parents, she was trying to act in her child’s best interests.

FWIW, dbro is socially awkward, but now has a good job (graduate, very specialised), a wide network of friends and family and is happy. Maybe she did make the wrong choice over 4 decades ago. But things have worked out over time.

Didn't see the point tbh. Always knew I was autistic growing up there isn't any treatment for it don't find a label helpful. Am considering adhd assessment to trial meds as so many of my fellow autadhd dr mates have said its licence changing. But there's still so much stigma, can't emigrate to oz/nx life insurance premium increase etc etc

It’s not just about school support though.

The ability to understand why your brain is wired the way it is, why you're socially awkward, highly anxious, why you process information different to your peers, why you have intense sensory issues (I could go on).

Put simply, knowing that you’re not a fucking weird unlikeable failure of a neurotypical person, but instead a very normal neurodivergent person, is absolutely priceless.

I do worry at the hypothetical limitations that can be put on young kids with a diagnosis. I present on an annual evening session for a specialised school for autistic girls called breaking glass ceilings to show you can thrive in life and may of us are working drs/lawyers/artists etc

Yup a lot goes for knowing you're a zebra not a failed horse (can't remember the phrase

There is no need necessarily to 'label' someone who perhaps shows some traits of ND but is otherwise happy and well socially adjusted, but if there are areas of struggle then a formal diagnosis can really provide great tools of support in these areas

Yes, this makes a lot of sense. When children are struggling it makes good sense to pursue a diagnosis. At its best, a diagnosis can provide a route to achieve help and support.

What I find annoying though are the enthusiastic amateurs who scan children for neuro diversity, congratulating themselves for spotting the diagnosis in children and then berating parents for not giving the satisfaction of having that diagnosis confirmed.

I'll put my hand up and say we've decided not to pursue a diagnosis for DS even though we're pretty sure he's ND.

Our reasons are:

We have had lengthy discussions with the school and coping strategies are in place. He is managed as though he already has an ASD diagnosis so there's nothing more that would be done that they're not doing now.

DS is high functioning and academically very bright. He loves STEM and knows exactly where he wants to go in life. He always completes tests quicker than the time allocated and often scores 100% in maths.

He's going to private school next year for secondary and the school specialises in SEN anyway so is fully equipped to support him.

When he gets too overloaded he has a day off when needed. He is doing very well in mainstream school and has participated in everything including residentials. He is house captain and is a popular and well liked lad, although he does struggle with groups that are too big in size which is why we're going private for the next phase.

The school have been very candid about the assessment process. There's at least a 2 year waiting list for ASD assessment and there's no extra funding anyway. Getting him diagnosed would literally make absolutely no difference to him at this stage.

If he needs a diagnosis for a tangible reason late on we will get one done privately but at this stage there is literally nothing that we're not already doing to support him.

There's no stigma or over riding reason other than we have a plan in place and it's working for him.

I also don't want to clog up the system when others need to get assessed more than he does.

Judge away. It makes no difference to us or would change how we as a family are supporting him.

Having a diagnosis often makes sod all difference unfortunately.
as a pp said, often you can get the same result by thinking you dc probably has whatever they’re suspected of having.

however I do think it’s sad if parents are closed off to the possibility because of their own hang ups or issues and might prevent their dc from understanding themselves better or getting support

Maybe they think neuro diversity is getting over diagnosed these days and think their child doesn't need a diagnosis