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 currently have a child in my class (Year 3) who very clearly needs a referral. Our SENDCO has tried everything with mum to encourage this but mum won't engage with school.

The child needs a lot of support academically (I don't have a TA and have 33 in my class, which is already high needs) and even more, they need huge amounts of support behaviourally, due to meltdowns that result in aggression, running away, destruction of equipment and verbal outbursts (swearing/shouting/anger). It's hard to teach in these circumstances and the other children are quite scared (understandably) as they've been experiencing this since Reception.

I have no idea why mum won't engage with a referral or even just a conversation about her child's needs (she doesn't bring or pick up as they go to a child minder) and she won't pick up the phone when we call. She's also never attended a parents evening. Our SENDCO is at the point of referring to County now.

I feel for the child. We need to work as a team to support.

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

I've seen/suspected this many times.

I work closely with young people who struggle in certain areas and often meet parents who either don't see if or refuse to see it.
Many parents just dont want it to be true, so they try to ignore it, saying the cause of their child's behaviour/difficulties is down to friends, school, teachers etc.
They want it to be anything else other than a diagnosis.

And I understand this, they are terrified for their child and what a potential diagnosis might mean.

I've met parents( after meeting the child) and they appear to be neurodiverse themselves, again not wanting to believe it or simply just not believing it as they had never been diagnosed themselves.
One parent like this had had her teenage son assessed, she found out he was autistic and kept it from him.
She was/is adamant he must not find out and asked us to promise to never to bring it up with him or say anything about autism in general.
Its sad because the child still can't access the extra help he needs as the mum doesn't want to risk him finding out about himself and nobody can force her to accept extra help.

They've shown who is ‘they’?
How it is a stigmatising label exactly? It might have been 20y ago but in which ways is it nowadays? Especially as it is not something that needs to be disclosed.

I have a friend who has a DS who very obviously has ADHD. She point blank refuses to go down the diagnosis route despite pressure from the school. Her reason is that she is totally opposed to medicating him and thus changing who he is. She feels that all a diagnosis will do is open up the door to medication and she'll come under even more pressure to comply.

I wish I'd been diagnosed as a child. Late diagnosis has unlocked workplace support and government support. I really would have benefited from support sooner, like when I was at school and at uni. I failed my first attempt at a degree and am still paying the student loan back.

I have spent my whole life feeling like a failed racehorse instead of a successful zebra. Result: self-harm, multiple suicide attempts, and most of my life on antidepressants.

Don't deprive your children of this support because of, to be completely honest, ableist and bigoted "concerns" about labels. No one says about a blind child "he doesn't need a label": neurodivergent children are no different.

There's also the issue with parents that they are themselves ND so when they look at their kid, they see themselves and it's lts 'normal' to them. Often it takes a kid to be diagnosed before the light bulb goes on and they look back. Then they look back through their parents and grandparents and it's a slap the forehead moment.

I've heard similar from several people - children scooted off CAMHS lists as soon as there's a suggestion they can get an autism diagnosis instead. And then no post diagnosis support for autism anyway.

It can be a gateway to support though….practical support, educational support and financial support….it can also ensure a child can access the correct specialist education ( if needed)…..several of our local primaries have an asd unit attached ..,and the children are able to mix in The mainstream class, as they are able…..without a diagnosis you cannot apply for a place

https://pmc.ncbi.nlm.nih.gov/articles/PMC10357465/

In some children, autism symptoms can change over time, getting more or less severe, and sometimes this will shift them into and out of diagnostic criteria, especially as there is evidence diagnoses needs fewer criteria now.

It's also the case that often transitions, say to secondary, or to university, are a point for diagnosis as the child or teen is confronted by new problems they are not equipped to deal with and this highlights them.

Diagnosis is also a matter of political and economic factors, I knew my dd was severely dyslexic but the school insisted she was just not a great speller and it took til after lockdown and me paying for it myself to get it on paper, and now no-one disputes it at all as it's so obvious.

One of my children, now an adult, chooses not to go for diagnosis, and has done since about age 15, and I can't make them. They don't want to and say there's no medication they can take anyway.

At the more severe end, this may be a very odd thing to do, but in the grey areas I think it's quite explicable why people wait, see if things improve, act when it all goes wrong, and fail to use the systems which are not set up for quick diagnosis at all.

I completely agree with this….it’s not a label….it is a gateway to all kinds of support and means the child is less likely to fall thru gaps in provision

I was diagnosed with dyslexia and autism in my 40s when I went back to university. The dyslexia diagnosis explained why, although I could retrieve information from a written text till the cows come home - the information didn't fully make it into my brain to be retained. I'd compensated my entire life with a stupidly high IQ (it's Mensa level but I've never been arsed with that) and just dodging around the issue, but I had one of the most spikey cognitive profiles the ed psych had ever seen.

The ASD diagnosis was life changing. I went from thinking I was just a crap human being, destined to be bullied my entire life - to understanding that I had stood out all those years, not because of something I'd done - but because I was "different" and that society hadn't liked different. It wasn't my fault. I understood all those times I'd hit burnout were because I'd overloaded my slightly strangely calibrated brain - and not because I was a crap human being. It gave me the ability to step back and analyse what my brain could cope with - and I moved into a career where I had the flexibility to work WITH my brain rather than battling against it. I'm now in a job where I can use my autism as a strength professionally rather than it being a weakness - for example, knowing I'm autistic and that I process sound and visual movement in particular at a different tolerance threshold to other people - I've gone in to see people on a mealtime setting (I assess swallowing as part of my job) and been able to explain straight away that the reason this person is putting their hands over their ears, hoodie over their eyes is that the room's acoustics sound "off" (echoey dining rooms are a bugger for this) and have they noticed that flashy reflection bouncing off the wall right where X sits that's hurting their eyes? Move the person to a corner without that - half of the distress behaviours have vanished - but no one's seen things at that level to join the dots. Just a small example but knowing that I process the world differently helped me no end.

@DreamyDreamy one thing I have thought about is whether a diagnosis of autism, in a person functioning well in society, is going to be a problem if they want to emigrate to somewhere with restrictions on their immigration due to health reasons. I don't have any knowledge of this, just wondering aloud.

in my professional experience, the parents who deny there's a problem and don't want to pursue a diagnosis are autistic themselves and so for them it's totally normal.
It's not just access to support that helps with a diagnosis though. The most powerful aspect of a diagnosis is for that young person to know that they're not weird, stupid, odd etc. but that they have a neuro developmental difference which means they view and live in the world in a different way. That's often life changing, in a positive way.

As someone who is currently receiving Access For Work support because of my autism diagnosis, I can confirm that you are talking total bullshit.

Support might not be there for the child because of resourcing problems at schools, but support can be there at university and in the workplace for the adult that child will grow into.

When you diagnose a child, you also diagnose the adult that child will grow into and in doing so you unlock support options for that future adult.

We were warned of this by the autism service when my child was referred - they specifically asked if we wanted to go ahead even though a formal diagnosis might restrict job opportunities and the ability to emigrate.

It's not a label. It's a medical diagnosis FFS.

Or would you say asthma, diabetes or a heart condition were all labels too?

My CAMHS counselor was worse than useless, told me try to pretend to be interested in what the other girls liked even if I wasn't interested in it. Basically, she told me to mask.

I didn't need to be told to change, I needed to be accepted for who I already was.

Autistic children need proper autism support, not CAMHS.

Many children who are on the spectrum and don’t know it will look at their peers and think they must be stupid because they can’t do what their peers can

Growing up they just want to dull the pain of being in a job/in a life surrounded by people who think differently, are more accepting of routine that to them is beyond boredom and that is why there is an increased number of people with ND who have drug and alcohol problems. They do it because they need to stop their brain so they can accept the 9-5 job in the office or what ever routine job/life they have.

If I was to live my life again but this time having a diagnosis. I would give in to my natural ADHD urges and do what I wanted.

My natural job would be in a night club 9pm-5am.
Not as an accounts clerk 9am- 5pm which after 2 years (because I can’t drink alcohol and have never taken drugs) I would have a nervous breakdown and have to take a year off. Before starting the process again

Finally diagnosed with ADHD 4years ago
Got 9/9 on all 4 areas of attention deficit and hyperactivity

But if you suspect that you are anyway, why does a professional person confirming that to you make a difference? Why can't you just recognise 'yep I'm probably a zebra' for yourself/child and then find out what works for you based on that?

Or if you don't give them the right 'label', society will provide one anyway: 'weird' 'stupid' 'freak' 'loser' all being four that have been applied to my child with ASD.

The most damaging one though was 'violent troublemaker' (not my child) to the child of very laid-back parents who just thought it would all work itself out.

My point being, we all have and apply labels all the fucking time. May as well be a medically correct one.

Yes! We’ve found it very hard to get treatment for OCD for DS because of his autism diagnosis. OCD is by far the more debilitating condition for him day to day. It’s actually heartbreaking.

Posters who believe 'labels' are automatically stigmatising are really labelling their own beliefs here...

The very few jobs where being autistic means we can't do the job is the kind of job we shouldn't be doing for safety or other good reasons. Those good reasons don't go away just because your child doesn't have a diagnosis. No one ever says "before you have your child assessed for being partially-sighted, be aware that they won't be allowed a driving licence with that diagnosis".

If Australia doesn't want me, then I don't want Australia. No one ever says "before you have your child assessed for being partially-sighted, be aware that they won't be able to move to Australia with that diagnosis".

My mother declined an assessment for me in the early 90s and devised her own programme to ‘de sensitise’ me which was basically extreme emotional abuse and traumatic exposure therapy.

I am diagnosed ADHD but this makes a lot of sense to me and the arguments in my house stem a lot of the time from Dd who can’t see that if she says she will do something but then does something else, even if that is going to be something that will lead up to doing what she said then to me that means she hasn’t done what she said

I did grow up with a mother who would promise loads but never seemed to get round to doing anything I wanted.