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To think if ASD is costing the UK 32bn per year we need to better early screening?

237 replies

Pelot · 12/01/2025 19:21

Autism costs the UK 32bn a year. That's more than cancer, heart disease and stroke combined.

Yet we don't routinely screen all children and get them the services they need early enough. Often the system waits until a child is so unable to cope that they become disruptive in school that a referral is made. Often families don't realise (because no one tells them) that their child is displaying multiple red flags and that they will likely have higher care needs. Those families go on to have multiple affected children because they had no idea what the care needs of the first would be. Surely getting intervention and support sooner would be more cost effective and allow families a chance to be more fully informed when making decisions about subsequent children?

OP posts:
AllTheMiceGoClang · 12/01/2025 20:56

Fargo79 · 12/01/2025 20:20

As a parent in an ND family, I feel like most of that money is spent actively wasting our time and finding ways to withhold the support we're crying out for.

Yes this.
I know very few autistic children who are supported well in school, or CAMHS, or their families for that matter.
CAMHS for my autistic dc was a complete waste of resources and did nothing to help my dc.

Schools actively obstruct diagnoses and support.

How are the figures going with undiagnosed ND young men in prison?

Start support young. Overhaul the crap education system completely. I have no idea about funding amounts in the UK, but I do know that right now thousands of dc are damaged via schooling which may well affect their productivity in the future in this capitalist world.

Lovelybitofsquirrel3 · 12/01/2025 20:55

gamerchick · 12/01/2025 20:52

And you see no autism at all going back through your family like then? It's just came out of the blue?

I don’t know most of my family so I can’t really say. I’m the only one diagnosed with autism that I know of. I think the family that I do know would have Asperger’s, as they are extremely intelligent but mentally ill

myplace · 12/01/2025 20:55

Millie2008 · 12/01/2025 20:51

This whole post is quite offensive to neurodiverse people who don't view being autistic as being a "problem"

That’s nice for those people. Not so nice for my friend whose DC are both autistic, close in age, and the second lad will never leave a care home where he has 2-1 most of the time. He may have preferred a bigger gap, in the hopes his second son would have an easier life.

myplace · 12/01/2025 20:52

There’s no point squabbling about minutiae. Everyone is using language their own way. One person’s struggle looks like another’s success

The point of early diagnosis wouldn’t be eugenics, but better understanding and strategies for helping the children. My life changed massively when I stopped using ‘traditional parenting’ techniques and did what’s probably now classed as child centred low demand parenting.

I ignored all the advice and rearranged the world until my child was a bit happier. He had intensive intervention, effectively, to help him cope and find his strengths and give him time to mature into the lovely man he is today.

He still wouldn’t consider a girlfriend, a new friend, a new hobby, a holiday, or anything else that isn’t essential. He’ll stay in the same job until the company closes down. He’ll live with us until we move away. At that point he’ll find somewhere else to live as that will be easier than finding a new job in a new place.

Some kids are trapped in situations where they aren’t understood, aren’t supported and enabled. It’s hell for them and everyone around them. Screening would go a fair way towards addressing that.

gamerchick · 12/01/2025 20:52

Lovelybitofsquirrel3 · 12/01/2025 20:49

I am autistic and I have read studies published by professionals in china (inconveniently for me, can’t link to them as don’t have them to hand) that suggest things going wrong in the womb can cause autism, including infections that the mother has that then cause the baby not to develop properly. I can’t confirm if it’s true or not, nor can I verify if the studies are real or not, I’m not qualified in any way. There are also studies that suggest that autism could partly be caused by environmental factors in combination to things going wrong in pregnancy

And you see no autism at all going back through your family like then? It's just came out of the blue?

Millie2008 · 12/01/2025 20:51

Pelot · 12/01/2025 19:57

@BusMumsHoliday I think we could do better with public health awareness campaigns. Not many people seem to know that spacing babies less than 2 years apart significantly increases the risk of ASD.

This whole post is quite offensive to neurodiverse people who don't view being autistic as being a "problem"

cansu · 12/01/2025 20:51

I would like to see more work on genetics of autism.

SquirrelSoShiny · 12/01/2025 20:51

Fargo79 · 12/01/2025 20:20

As a parent in an ND family, I feel like most of that money is spent actively wasting our time and finding ways to withhold the support we're crying out for.

I also agree with this. Watching families in obvious need fighting for the help required is a bloody crime.

Firefly1987 · 12/01/2025 20:51

Pookypook · 12/01/2025 20:48

JFC, what a comment. Are you quite alright?!

Yes I'm not sure what is wrong with the comment. Is autism not supposed to make social interactions harder? It's literally in the diagnostic criteria.

gamerchick · 12/01/2025 20:51

NattyTurtle59 · 12/01/2025 20:39

To those of us who have been around a while I can assure you it is surprising. Where were all these people with autism when I was young?

Tied to radiators in institutions.

Schools when I was a kid were set up differently. Rows of desks facing the front with a lid to your own space and spaces either side of you. Very little choice available for kids and rigid routines. The world is different, busier and bigger now with a lot more stimulation and choice. It was easier to cope and to mask when I was at school because kids worlds were smaller.

Lovelybitofsquirrel3 · 12/01/2025 20:49

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

I am autistic and I have read studies published by professionals in china (inconveniently for me, can’t link to them as don’t have them to hand) that suggest things going wrong in the womb can cause autism, including infections that the mother has that then cause the baby not to develop properly. I can’t confirm if it’s true or not, nor can I verify if the studies are real or not, I’m not qualified in any way. There are also studies that suggest that autism could partly be caused by environmental factors in combination to things going wrong in pregnancy

BeensOnToost · 12/01/2025 20:49

It's an enormous cost to screen every child when the incidence is something like 1 in 100, not to mention that there is a very real risk many cases will be missed and it offers false assurance and thinking that "my child's fine, I had them tested".

It's also 99 appointment times and costs that could be used to support children and other services.

You say parents might overlook it but 1) that can happen anyway and 2)parents do have a responsibility to advocate for their children. A counter argument could be that there should be a parenting test and if you score too low because I.e. you can't recognise and advocate for your child, then you can't have kids.

biscuitsandbooks · 12/01/2025 20:49

Firefly1987 · 12/01/2025 20:47

Considering autism is supposed to massively impact social relationships, it is a bit surprising that so many have no trouble with relationships and having children.

Just because something impacts social relationships, doesn't mean you can't have a marriage and a family, though Confused

There's a reason why lots of ND people end up married to other ND people...

dermalermalurd · 12/01/2025 20:48

There is a whole lot of uneducated nonsense on this thread.

Pookypook · 12/01/2025 20:48

Firefly1987 · 12/01/2025 20:47

Considering autism is supposed to massively impact social relationships, it is a bit surprising that so many have no trouble with relationships and having children.

JFC, what a comment. Are you quite alright?!

Pelot · 12/01/2025 20:48

@gamerchick That's not true at all. There's a lot of scientific literature to support that spacing DOES significantly impact the chance of a child being autistic. Perhaps educate yourself before being so rude.

This link is fairly easy to read but there are plenty of others and pubmed will give you lots of the articles.

autism.org/pregnancy-spacing-may-affect-odds-of-asd/

OP posts:
SquirrelSoShiny · 12/01/2025 20:47

soupfiend · 12/01/2025 20:02

There is a growing openness now within childrens professionals that there isnt enough focus on attachment and trauma impacting on ASD like symptoms which then lead to a diagnosis. Also that the new way of describing ND as all one thing, when the reality is that there are children/adults with autism who are non verbal and non mobile and will never live independently, and the same diagnosis is used to apply to someone with a job in accountancy who functions well in the world.

It goes down like a bucket of sick for some reason on this forum but the reality is there is growing concern about that.

I agree 100% with this. But yes, get your flameproof suit out.

biscuitsandbooks · 12/01/2025 20:47

Kuch3n · 12/01/2025 20:44

Being successful in your career doesn’t mean you function well in life. I have family members who had seemingly “successful” careers however they absolutely couldn’t be described as functioning well in life.

How are we defining "functioning"?

Lots of people with autism go to work every single day and get through the week without any (visible) issues. But they then go home and melt down, or shutdown completely. On the surface, those people manage just fine.

Others can't cope with work and will melt down or get too overwhelmed to even make it through an hour or two in the work environment.

The former aren't necessarily coping any better than the latter, they just manage to keep the mask on for a bit longer, that's all.

Firefly1987 · 12/01/2025 20:47

bradfordisdamned · 12/01/2025 19:45

Of course it's skyrocketed. Parents with autism who have children, are more likely to have kids who also have autism. How is this surprising?

Considering autism is supposed to massively impact social relationships, it is a bit surprising that so many have no trouble with relationships and having children.

Kuch3n · 12/01/2025 20:44

biscuitsandbooks · 12/01/2025 20:35

In the nicest way, you seem quite misinformed.

You can work, be "successful" in a career and still struggle with all the things on your list.

Being successful in your career doesn’t mean you function well in life. I have family members who had seemingly “successful” careers however they absolutely couldn’t be described as functioning well in life.

Pookypook · 12/01/2025 20:43

Kuch3n · 12/01/2025 20:41

Which is exactly why being able to work doesn’t clarifying somebody as functioning well in the world.

Apologies, I think I misread your post. I thought you were saying the reverse 🤦‍♀️

biscuitsandbooks · 12/01/2025 20:43

NattyTurtle59 · 12/01/2025 20:39

To those of us who have been around a while I can assure you it is surprising. Where were all these people with autism when I was young?

Many would have been medicated and sent to live in care facilities for the rest of their lives. Others would go to "special schools" and then stay at home indefinitely. The more "high functioning" would have just been seen as odd or weird or special.

Autism isn't new. It's always existed. It's just it was hidden from public view much more often in the past.

Pelot · 12/01/2025 20:42

@CautiousLurker01 my point isn't about two specific kids..this is health economic data that goes across a massive group. But even in your case why did you pay for private? We've paid for private education because ours wouldn't cope in a state school with 30 kids. They wouldn't have gotten the social and emotional support they needed either. It's still a cost. Because I'm shouldering it privately doesn't make it an additional cost. It If I had NT kids I would have happily used the local primary school.

OP posts:
soupfiend · 12/01/2025 20:42

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Its not inherited, just to say

Its thought at the moment to be genetic. Thats not the same as inherited. This misunderstanding is quite widespread

Pookypook · 12/01/2025 20:42

NattyTurtle59 · 12/01/2025 20:39

To those of us who have been around a while I can assure you it is surprising. Where were all these people with autism when I was young?

Oh don’t worry, we were there 👋mostly struggling along unaided and/or misdiagnosed