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?

My ds went to mainstream school, has a job and is an athlete and has an autism diagnosis.

One of the diagnostic criteria is that it has to have an impact on life.

If you don't have a diagnosis you aren't autistic. And if don't let sue a diagnosis it's because there's no significant impact - therefore it's likely you don't meet the threshold.

My ds Gp has a genetic condition.

It's not an illness.

I've known parents who won't seek a diagnosis, they don't want the stigma and prefer their kids to just struggle on without extra support. Makes me sad for those bairns.

@FancyBiscuitsLevel while there aren’t treatments for autism there are adaptations, some of which can work magic.

To all the “don’t see the point” parents - if your children are at/near teenage years, why not involve them in the conversation and make a decision with them? It’s their life after all. The path of “functions or excels at school, all goes to shit at uni / the workplace” is a very well trodden one for ND folk.

We did - that how DD1 ended up sat on a NHS waiting list for 2 years - when she hit adult at 18 just before uni they had no adult service in our area to go on.

When she asked me to fill out form or attended assessments we have - all the time offering support and help her develop strategies.

What I couldn't do was magic up 4 K for a private assessment process and thank fuck my kids understood that as so many on MN can't seem to.

Denial

How do you know we haven't had those conversations with our kids? Bit of an assumption we are not involving our kids in the diagnosis decision. Or that the school aren't talking to them about how to support them and come up with an agreed plan.

Can't speak for everyone but DS has been very involved in every decision, including chosing the secondary school he goes to and is happy that he's getting the support he needs because people are recognising he needs it.

I think you're projecting your own experiences and making assumptions about other families.

This. I'm 40 now and was diagnosed at 28.

I spent most of my twenties in deep depression and at some points I was suidical.

I couldn't understand why I wasn't like everyone else and it broke me. I failed as a human.

Since the diagnosis I've flourished. I know who and why I am, and I'm happy. I've found a job that plays to my strengths and not my weaknesses and I run my home in a way that works for us.

I don't blame my parents, they didn't know.

I've got one who was referred at just 7, 6 years later got to the top of the list and refused to go to the appointment.

With waiting lists of 6 years, ie a third of a childhood its a pointless exercise

One thing though, is that as a parent, knowing about DS’s autism was quite helpful to judge some situations:

I see him chewing something « what are you eating » Him « nothing ». Indeed, he was chewing gum, not eating. With my NT child I would known they were being insolent, with him, I explained that when people ask they mean what do you have in your mouth.

When he used the word ‘fucking’ and was upset when told off. I had to spell out to him that if ‘fuck’ is a swearword, ‘fucking’ is one as well.

« We’ll watch tv when we go home ». Meltdown on arrival at home when I ask him to first wash his hands, drink some water and take something upstairs: in his mind I had promised that the tv would be turned on the second we arrived, an NT child would have understood « tv will be the next activity, a few 30sec tasks can happen first but we won’t start ‘doing’ anything else ».

I have so many, it really helps me stay calm and explain social conventions rather than feel he is being rude on purpose.

then a formal diagnosis can really provide great tools of support in these areas

What are the great tools @jasmine465? Hoping they might help us.

My DC was diagnosed as autistic 10 years ago and with adhd more recently and supports have been limited and very generic. He a teen now and there was no suitable school place for him so he ended up at home (we’re not in the UK). He struggles enormously, no intellectual disability but many MH issues which are very debilitating. He is on medication that helps somewhat.

You can know yourself/your child without getting a diagnosis though, especially these days.
There's no help or support available after diagnosis for autism, the diagnosis itself doesn't change anything.
My child is autistic, supposedly they're still on a waiting list for an assessment but who knows if or when it will ever happen. They don't need it though, it will make no difference to them.

I was diagnosed with ADHD as an adult and burst into tears with relief! It explained so much! I stopped feeling stupid and lazy and realised that my brain just works differently.

I wish I'd had the diagnosis as a child because I would have received assistance at school and probably wouldn't have the anxiety and depression that comes from years of masking and feeling like an alien on another planet! I feel so sad for that little girl who struggled. I'm less critical of myself and more forgiving.

It's also come in handy because both DCs have ADHD and I know the best ways to help and understand them.

My DDs teacher has tried to persuade me NOT to get my DD an assessment for dyslexia.

I totally get that support in school is meant to be based on need and not diagnosis but there is so much more to it than that for me. DD is very frustrated and upset that she finds some aspects of learning so difficult, I want her to be able to understand why that is so that we can help in the right way for her, rather than just applying a generic set of adjustments which may or may not be beneficial.

Some parents don't want a 'label' without realising that it's the 'label' that gets them the help.

I think it's really, really awful for parents to not bother to get their child diagnosed. So, so sad.

It's also awful that people describe having ASD as 'a label'. This is the biggest bullshit ever. Naughty is a label. stupid is a label, ASD is a diagnosis.

It's also something that no one else has to know about if you don't want them to. Kids don't have to tell their friends. Parents don't have to tell their friends if they're embarrassed. The idea that with disability there's a 'stigma' is so outdated and disgusting to me though. Anyone who thinks there's a stigma to a disability is not someone I'm interested in knowing.

DS's diagnoses have helped him beyond compare. He doesn't feel odd now, he knows why he sees things differently. He is really happy having Aspergers as he links it to him being clever and being an excellent programmer. It explains why he likes a lot of time alone. He no longer seems himself as clumsy now he knows that he is dyspraxic. He now knows why he isn't great at PE. He now knows that he's not just careless and clumsy and that there's a reason he's a bit of a loner - those are labels that can no longer hurt him because of his diagnoses.

The diagnoses have also helped him hugely at school, there was no problem him using a laptop at school or being in a small room for exams or using ear plugs when needed.

However where getting a diagnosis has been really invaluable has been in getting a job. Interviews are known as a huge barrier to people with ASD getting a job. More and more companies are now recognising this and offering questions in advance to autistic candidates. I spent years and years worrying that DS would never get a job because no matter how clever he was, if he couldn't perform at interview then he didn't stand a chance. But thanks to getting the questions in advance he is know working as a software engineer and loving every minute.

I have never for one minute regretted getting DS diagnosed, I really, really wish I had known that I was ND as a child and understood why I was different and struggled with the things I struggled with. Unlike DS despite me being clever (research degree with distinctions) I have never had a job that matched my abilities. I'm so glad he is valued and understood.

What help?
That really depends on the diagnosis, doesn't it?

I have a friend who has pushed for years to have her teenager assessed for autism. She's only recently diagnosed and the parent now feels that she shouldn't have pursued it and she should just have ignored it. It's hard to fully understand why, and she's probably struggling to process it herself, but I think she feels like she does well in school, and yes she clearly has issues in social situations, but my friend is now of the opinion that everyone struggles with certain things and you should just get on with it. Guess it's a tricky one.

I know a family like that, where both parents are clearly ND, and I would put a strong bet on one child having ASD, the other ADHD. But mother thinks 'it's just the way they are' because it has always been her normal. (I come from this kind of family too, so am not judging; it's taken me a long time to work it all out).

However, a diagnosis is not just about being 'seen' with ASD, for ADHD, medication can be a game changer - DD was diagnosed in secondary, opted for medication, went up 2 grades within three months in all the subjects she hated. This will have changed her life in a way that would have been hard to unpick when she was older - and it's also made her a lot happier about not being like everyone else.

Don't be ridiculous, there are thousands of people out there without an ASD diagnosis who don't realise they are autistic, they just don't realise their issues are caused by ASD. They may live very solitary lives, spend a lot of time unemployed or self medicate. It's quite possible to be an undiagnosed autistic.

I have long suspected 9 year old DD has signs of ADHD. (Brightest in her class and finds school easy, can't sit still, lacks empathy, endless energy, impossible to get her to follow instructions, still has to be told every single day to brush her teeth, change her pants and socks). My DH only recently voiced it out loud when he got close to a friend with diagnosed and medicated ADHD. He told him he has to have reminders for brushing his teeth and having a shower, yet is an absolutely genius level IT tech who can focus on a complicated task for 24 hours without a break. I struggle with DD as I'm a task oriented person. On a morning I have a list in my head of what we all have to do to get out of the house on time and it's almost impossible to deal with my DD's chaos. We are late Jo matter what time we get up and how much prep we do the night before. I don't know whether we will pursue a diagnosis but I'm kind of thinking do I want to label her? Would a diagnosis single her out as different and is that a good thing? Would it change how I cope with her anyway?

There isn't just two categories of people - those who function well in all circumstances and those who don't. Why does it take a diagnosis for individual differences to be deemed acceptable?

Absolutely this. Have a look at mental health stats for diagnosed autistic people. Many of whom simply aren't getting the support that they need even with a diagnosis. If you haven't a diagnosis, and are autistic, the likelihood of being able to access all the help and support that you need is very low indeed.

But what about in the future when he could find university overwhelming or when he's not able to keep a job because the environment is fine for somebody NT but not for somebody ND?

It's not just the secure, happy child in their familiar environment - it's the student at University, the repeatedly fired 20 something who 'isn't a good fit', the 30 or 40 something told they are being moved into a noisy, constantly distracting, overwhelming open plan office or the windowless one with flickering fluorescent strip lighting and is where people walk through constantly as a short cut or there are nine other people all taking calls and chatting where fulfilling his role requires concentration, told to stop complaining get on with it and why aren't they normal like everybody else, the loud radio, the confrontational management, the person being threatened with dismissal for not being able to get up and move around. It's the person who is bullied by some twat - male or female - for being different but 'It's just banter and he's weird/creepy anyway'.

Diagnosis gives protection. It's an invisible, unequivocal, legally evidenced shield. Not a fucking label.

Agreed. I've bought this up for discussion with DS for several years on and off. He is so uninterested you wouldn't believe 😂. I'm the only one at home who is interested and I've kept coming back in case things are being seen differently as the years go by. As it turns out, DS is quite visible in his oddness. Sendco picked him out in y7, he's 'known' by his teachers. The kids in his class and in years above call him names and pick on him a certain amount. They have labelled him autistic. So, you know, heknows he's different.

The thing with an asd diagnosis, it doesn't explain WHY at all. No one knows what ASD is biologically speaking. So getting a label is no real help. It simply lists back to you all the ways you are different to others. Everything you already know and indeed gave in the assessment forms! As for joining support groups, I couldn't think of anything less likely my DS or anyone with ASD would do. More socialising?!!!

My experience is the opposite. Diagnosed autistic age 30 after years of severe OCD. No longer entitled to treatment for OCD due to autism diagnosis. OCD is the main issue for me at this time.