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

[Pelot]

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?

Would also say this is untrue. I have a friend who went for private adult assessment of autism. They said she didn’t show enough of the signs ( only in a couple of areas)

also, diagnosis rates at private clinics are going to be high anyway. Most people who go, do so because they’ve faced significant struggles. They’ve probably gone through various avenues ( counselling etc) so there’s probably already very clear signs of something ‘wrong’

this won’t be people who are just a bit shy

@Chesterdrawswalla I feel this too quite often. When things are ok it's easy to forget and be positive about it. Most the time it's so difficult.

I wonder in some cases (ASC Level 1), if it would be less difficult and stressful and have such an impact on families if the school system was perfected. So much more to it than that, but that situation alone in so many cases is the source and trigger of greatest upset / meltdowns/ aggression / MH collapse etc etc.

The high functioning / low functioning labels that came next weren't helpful either.

I have a relative who was diagnosed with Aspergers, then changed to high functioning autism. They were highly intelligent but burned out and ended up with severe mental health issues, panic attacks, social phobia and ultimately took their own life. High functioning is really high masking.

What would be useful I think is to somehow distinguish between autism vs autism with LD.

An organisation I used to work for and dealt with CHC had multiple DCs with care packages in the thousands each week. The costs are astronomical.

@BusMumsHoliday

All healthcare decisions are made on a cost-benefit basis because it all costs money and priorities have to be established. Just as an example, routine screening for cervical and breast cancer and prostate cancer is done because of studies showing early detection results in less costly and more effective medical intervention. Childhood vaccinations are another routine medical intervention that saves money in the long run.

search.app/Guftr52YkgBNQje87
Autism is not an exception to the economics of healthcare.
The study referenced here showed that high quality, evidence-based developmental and behavioral intervention for children aged 12 - 30 months paid for itself in two years.

I’m not an expert in genetics but the same way that some children are born with blue eyes whilst their siblings have green or brown.

There’s always throw back genes too. I have very big feet. My mum, sisters and grandma all have size 5s. Apparently my great aunt had ‘comically big feet too’.

Myself and my husband both have dark hair as per our parents. As we were expecting our child has dark hair too. I am ND and there’s a lot of family members on DH side on the spectrum. We decided that we’re not going to have children over the age of 35 as the odds aren’t in our favour. Luckily our child doesn’t show signs of being ND yet but I’m keeping a keen eye out as I wouldn’t be surprised if they end up having something.

The DSM-5 differentiates the 3 levels of Autism. The uk would do well to adopt using it. There's such a huge range in the presentation of autism.

www.verywellhealth.com/what-are-the-three-levels-of-autism-260233

That is very much untrue.

I would wonder how my boyfriend would fit into this. He has a semi-decent job, and is great with life admin. He helps me with mine!
But he can not self regulate at all, and has been restrained by police in a public place when he has had a meltdown.

The "not a disease" distinction is irrelevant.

All interventions (speech, OT, MH, and educational accommodations, etc) cost money. Respite for caregivers costs money. Residential care costs money.

Early, targeted behavioral and developmental intervention can greatly reduce the need for ongoing support for older children and adults.

Why is it offensive to wonder when I've struggled socially myself. I have zero chance of having a relationship or kids. My only brief relationship (you can't really call it that) was with an autistic guy as it happens. It lasted 3 months and the most we did was hold hands-we were 23. I've never even kissed a guy.

You know you can have sex and get pregnant without being particularly adept socially?

Not really, at least it'd be far more difficult. Living proof right here. I didn't say impossible, but it's something that has always confused me since I came on MN-I think other sites are more representative of the struggles autistic people face in this area. Obviously MN is more likely to have people with kids on it so it's possibly skewed towards the ND people who overcame their struggles with relationships.

That poster must have had a reason to be in front of the person who was qualified to diagnose them with ASD though. You don't get to that position accidentally.

I don't need to get a diagnosis even though I more than suspect I am autistic. (The type that would once have been called Aspergers). It serves no purpose for me.

I'd once have laughed at the concept that I could be autistic but I now know enough to disregard those preconceptions.

High functioning is really high masking.

God yes, and this gets overlooked so often. I appear high-functioning - I'm married, run a business, did a degree and am pretty independent on the surface.

But my mental health is in tatters. I struggle to do things outside of a set structure and routine. I burn out and get overwhelmed very easily. My anxiety is horrendous and I can't easily do things like go to a supermarket on my own as I get too overwhelmed. I also really, really struggle with sensory overload and textures to the point that it can bring me to tears in the middle of the day.

High functioning doesn't mean okay.

We know that autistic people use far more healthcare resources on average over their lifetimes and ASD has lots of other often present comorbidities. What we don't know is how investing in a different care model might bring down some of these costs. Access to healthcare is a huge issue for most autistic people. Simply being verbal isn't enough.

www.cam.ac.uk/research/news/autistic-individuals-have-poorer-health-and-healthcare

We invest a tiny amount into cost effective strategies for supporting those with autism compared to say cancer even though the cost of supporting autism absolutely dwarfs cancer.

www.lse.ac.uk/News/Latest-news-from-LSE/2017/01-January-2017/32-billion-cost-of-autism#:~:text=Just%20%C2%A34%20million%20is,autistic%20people%20in%20the%20UK.

Still doesn’t explain younger parents that have kids with ASD. No autism on either side of family,I was 37 when I had affected DC2.Not obese by any account,neither me or H.

Autism charity that runs the events in my area has all kind of parents- from younger to older,slim to obese.

There’s no rhyme or reason 🤷‍♀️

Never thought of this before - so true!

I don't dispute any of that. Early intervention can both improve the quality of life of people with autism and can save the state money. It's a win-win.

My point about eugenics was that the initial poster moves from "autism costs the state so much money" to "maybe parents of autistic wouldn't have other children if they knew early on their previous child was autistic because they would be 'fully informed'." There's at least a subtext of, "those parents should stop reproducing" rather than, "wouldn't it be nice if people could have a family of the size they wanted, knowing they could access services they needed"

@TangerinePlate do both you and your DH really know your entire family history going back several generations - including all distant cousins etc?

Lots of people would look at my family and say "there's no autism there" but there absolutely is and was.

@TangerinePlate risk factors are not the same as causes. There is no 1:1 correlation just factors that increase or decrease the odds of a baby being autistic. Your maternal age would be considered an elevated risk factor. Women over 40 have a 77% higher chance of having an autistic baby than women under 25. You weren't over 40 but the risk increases with each year of age over 25.

Having sex and getting pregnant isn't more difficult for autistic people. What you are talking about is a type of behaviour that some autistic people experience, but it's also experienced by non-autistic people.
Autistic people have relationships and friendships - https://pmc.ncbi.nlm.nih.gov/articles/PMC8992810/
https://repository.uel.ac.uk/item/85066
https://link.springer.com/article/10.1007/s40474-020-00190-1

Autistic young women are often in sexual relationships at a young age, and find it difficult to navigate the nuances of relationships and so can often fall into relationships more easily and stay in them when they are no longer safe.

Absolutely this

Exactly this. Unfortunately I’ve come across a few medics like this poster’s ignorant GP friend, like the one who said my DS “can't be autistic as he looks fine!” He was diagnosed the following year and now has an EHCP.

Completely agree with this entire post, especially using autism vs. autism with LD/DD. So tired of people trying to bring in the US Level 1 2 3 stuff.

Also incredibly uncomfortable with the undertones of this thread. Can absolutely see kids in school taunting my son about him "costing too much"

This type of thing absolutely leads to eugenics because many people simply do not get nuance. Councils in England spent £100 million last year on failed efforts to block support for SEN students, so is that factored into the £32bn we autistics have supposedly cost? Can I further deduct the money I've made or saved the state or does that not count?

And finally, what's the end game?

Like, really, what IS the endgame here? Some of you would be happy to pull a Hans Asperger and do away with the ones who need a bit more support, yeah? Maybe sit with that for awhile. Just sit with it and reflect on what you want the end game to be.

@Scattery You've misunderstood. It's not about cost to the state its cost overall whether you incur it personally or the state does.

I am ND with multiple ND children. I want better targeted support and better research into what is actually effective. What we currently have is a mess and haphazard at best. And yes I think ALL people should be aware of the risks to their potential children. For some of us having an autistic child has been nothing like the future we planned and it's significantly impacted our ability to provide for our other children. It simply the reality of it.

The National Autism Project published a pretty extensive piece of research into what is actually effective, several years ago, in a report titled "The Autism Dividend." The PDF can be accessed on this page: https://nationalautistictaskforce.org.uk/national-autism-project/