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?

Countries aren’t keen on extra costs, few are anti autism when it presents no extra burden to health provision. It’s the struggles that require extra financial drain that would be a barrier not the diagnosis itself even with Australia which is I think the country most anti autism.

At the end of the day how likely is emigration for anybody?Most countries are tightening up emigration for everybody. The idea that just because you live in the UK you can emigrate wherever you want is far from reality. Working Visas are more common and I have family members with autism who have obtained quite lengthy working visas very easily. No problems with getting health insurance for said visas either but although it presents difficulties their autism doesn’t bring huge costs to the state. Autism is a spectrum with a big range as regards need and burden to state.

So using emigration as a reason not to diagnosis is a bit ridiculous.

And actually one can argue that getting the support you need (which diagnosis can help with )is far more important and more likely to help with success in life than not pursuing diagnosis due to a very unlikely emigration scenario in the future.

Its only ridiculous is the family involved arent thinking of emigrating. For some families that is a factor. It's quite hard to prove with young chikdren there will be no costs as noone knows how they will be as teens or adults.

These were actual issues we have had that some people aren't even aware are a possibility. It's why I get so cross with the idea people want a label Like its a fashion accessory. It has real life consequences.

I did state I was pro diagnosis. You seem to have missed that.

My son has a diagnosis and I wouldn't be without it. But it has not only been positive and the question was why do some people not pursue a diagnosis. Not why do you think they shouldn't because.

Emigration isn't some hypothical in the future thing for all parents. Lots of people consider if they might be able to offer thier child a better life somewhere else, with a different education system.

Few families will be thinking of emigrating as it’s very hard to do so for everybody.Also if your child has expensive documented issues ( health, education, social)that will hinder an emigration not a diagnosis. Many countries don’t discriminate.

Do jog on with your “fashion accessory”comment. Diagnosis has saved my daughter’s life and got her treatment adjustments she needs and an education. My diagnosis has had a massive impact on making sense of difficulties and is proving to be hugely helpful with treatment adjustments and progress for my other children who have struggled massively in every area of life.

I think you misunderstood me.

I said I DONT like people saying it is a fashion accessory because it isnt one.

I certainly did not in a shape or form mean that people were getting diagnosis as a fashion accessory. The people going through the process are going to understand the positives and negatives more than anyone else and it will have been an expensive /difficult process. This is why people saying things like fashion accessory upset me.

I 100% agree that getting a diagnosis helps people which is why I said I am PRO diagnosis.

But i am putting myself in other peoples shoes, thinking why other people might not pursue one, even if i think they are in the wrong for doung so.

These were real life examples of problems we or friends have had that i could see would put people off. none were hypothetical. I am still upset about the DNR!

But the fact remains it’s incredibly hard to emigrate particularly to English speaking countries and set to get a whole lot worse- for everybody. USA is nigh on impossible for everybody but an autism diagnosis does not prevent you from emigrating, Canada you still need to be able to qualify which is increasingly harder but it doesn’t discriminate. Even Australia isn’t an outright no if an autism child doesn’t exceed burden to state thresholds.All countries will look at burden to state and struggling autistic children will still need to access services now in the UK regardless of whether they have a diagnosis or not- unless you’re planning on withholding those too.🤔

I haven’t read the whole thread but I did pursue a diagnosis at four and my child was deemed NT. I was very happy and now eight years later I still think he is probably on the spectrum but none of his ‘quirks’ affect his every day life.

The caveat to that is I do know of a scenario where the parents have actively decided not to go for an evaluation on their eight year old for fear of stigmatisation. Because there is no EHCP the child is struggling with a lack of support and the full force of school regulation is coming down on any negative behaviour. I actually think in this case a diagnosis would have been beneficial. It would have protected them.

I'm not planning in withholding anything?

What an odd comment.

I think you are simply trying to say people who have worries about emigration don't need to worry as diagnosis isnt a factor, just how the diagnosis impacts on them is a factor.

Which will be very reassuring for those who are still unsure whether to pursue a diagnosis.

If you are actively thinking about e.g. moving to Australia, and your child doesn't need urgent help, then yes, it would probably make sense to wait. Lots of countries you can move to are very difficult to get decent educational accommodations though anyway, so I'd suggest it makes sense to look at more than if you are 'allowed'. Much of mainland Europe for example has very outdated and hostile schooling for ND children.

Things can also change very rapidly. A child who is managing and doesn't need 'much' can have the wheels fall off very rapidly when transitioning to secondary school. Having a diagnosis shouldn't speed things up but it does in that case, not least in avoiding the dreadful 'parenting courses' most LAs lay on as the first hurdle.

I would always go for a diagnosis so that the child in question understands why they are the way they are.
Having my diagnosis doesn’t EXCUSE why I’m like I am but it explains to me WHY I am that way.

I had a trawl through the criteria. My understanding is autism would qualify for under 16s but not necessarily for 16+.

Surely that really depends how likely your individual family is to move around the world. In my family and my husbands this is commonplace.

Moving isn’t emigrating and far more common place and easier. You get your own health insurance and are no longer term burden as you are there temporarily.Emigrating is normally a one off life experience, not that common and involves more state support.A child needing a lot of support and help from services will be well documented. That will be more problematic when emigrating than an autism diagnosis for somebody who doesn’t cost the state that much.

@LazyD0g I can assure you the diagnosis is big problem even if you’ve never required state support. It’s about potential burden to the host country going forward. I’m well aware what emigrating means, but actually there are many people who have multiple moves in their life it’s obviously just not the circle you are familiar with. Presumably that’s why something that adds constraints to that sort of life style isn’t that important to you.

Its a bit like telling someone they must “come out” as gay and poopooing their assertion that that would make life difficult for them if they wanted to travel through the Middle East, by telling them “not many people go to the Middle East anyway”.🙄

Nope, a multiple moved family here( I’ll ignore your patronising tone) with moves abroad,just not multiple emigrated and seeking permanent residency. People don’t seek to make permanent residency moves each time. As long as you can get medical insurance an autism diagnosis is not a big problem with working and living abroad on temporary visas, if it was the tech industry would go under. My son got medical insurance on his work visa without any problem, the difference in price was negligible.

I was matching my tone to yours. Of course many people just have work visas or have those for years till they qualify for more permanent residency. I disagree that people don’t make multiple moves in their lifetime but it’s ok if you don’t agree. Everyone has different life experiences. The fact remains that it would be foolish to accept a diagnosis if you knew it would hinder your access or your child’s going forwards.

Lack of insulin can be deadly, literally, if not given. The same does not apply to ND.

Exactly if a child rocks up at A&E unwell with undiagnosed Asthma or Diabetes they will get treated and the hospital will get to the bottom of the issue, fairly sharpish.

ASD or ADHD is never going to land a child in A&E so it's a long wait on the NHS. If that child gets to adolescence THEY need to consent.
So fuck all parents can do. You can't push for a diagnosis if they say no.

Pretty stupid to compare deadly illness with any sort of learning or communication difficulties.

Maybe this will give a flavour of the attitudes in some of the more popular destinations for uk emigrants

https://www.expat.com/en/expat-mag/10642-moving-abroad-with-a-disability-what-you-need-to-know.html

I'm probably not the only person who as a teenager was dismissed with depression and OCD. Part of that was self harm which is serious

Only Australia was singled out ( and the country mentioned) and as the article says:-

“Australia is one of the few popular destinations that exempts itself from its own rules to restrict immigration by disabled people.”

Canada has recently changed and does not discriminate against autism. 😊

Self alarm and Eds which are prevalent in ND can be deadly if not treated.

You are choosing to ignore what I said. Yes people choose to move multiple times in their life time, they don’t however choose to apply for permanent residency multiple times. Temporary work visas ( even long periods) are not a problem with ND as you aren’t staying permanently and sort out your own health insurance.

Even more foolish is denying your child a diagnosis which could help. Such actions will make achievement a lot harder and moving abroad a lot less likely anyway.