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

This exactly. What is seen is an epidemic of unmet mental needs because ‘functioning well’ in the world is not just earning money. Recent stats indicate 1 in 10 children accessing Camhs is autistic (diagnosed and not yet diagnosed). I’m not sure how that has been determined but we don’t have inclusive services and too often MH problems are equated with autism until someone is suicidal (or has sadly died). It sounds slightly hysterical when it’s put like this but looking up the mental health and suicide risk is sobering. It’s often not trauma or autism but trauma and autism. Autistic people are often likely to have a co-occurring diagnosis of ADHD (50 percent upwards). This isn’t diminishing the experiences of autistic non speaking and/or learning disabled individuals and the level of support needed but it doesn’t need to be a race to the bottom in terms of appropriate understanding and changing cultures to be more inclusive.

I work wih children with disabilities and have done for 20 years. Totally subjectively while there is a definitive increase in ASD diagnosis I do think that parents have lost their "village" so children who have more challenging behaviours when little are just being parented by one person, we don't have other people supporting, socialising, disciplining etc and parents can become overwhelmed and often go for an easier option so children miss out on developmental milestsones. We also incorporate less movement into a child's routine they spend more time on screens. Parents then think that sltgere must be some other cause and seek a diagnosis. In short I think our early help needs to be more robust with supporting parents in early years to plug gaps and help them to meet their child's milestones. We need our lives to be less grinding so that we aren't forced to work all the hours God sends and have less time to spend with out children and social networks need to improve so parents can spend more ime with their children. I'm not minimising a diagnosis merely saying that where children (Austitic or not) may have been able to cope with school or nursery without support for longer they are needing additional support earlier. I'm not blaming parents just a very broken system. People with ASD have always been there, it isn't any more prevalent now than years ago its just our awareness, requirement for a diagnosis and support has changed.

Not sure how effective this would be. A close friend of mine and her partner had a child with severe autism and multiple disabilities and will need 24 hour care for life. During all the testing that was done, the consultant told them they were genetically incompatible and if they had future children, they would be highly likely to also be severely disabled.

Despite knowing this, they went on to have FOUR more children. I don't think people really care if they just want to keep having children.

You see it on here all the time too. People knowing that older parents increase the risk of autism, but they don't care, they just want that baby.

But we can only go off the best sources we have surely? That would apply to anything.

I don't think 22% is normal. Combined with the pay gap I think it shows that the odds are well and truly stacked against autistic people.

That doesn't mean there won't be rich and successful autistic people. Clearly some of the most wealthy in the world are. But it's not typical.

I know it's the best we have, I just don't believe it's necessarily representative of the autistic population as a whole @Willyoujustbequiet.

There are a surprising number of people with autism who manage to work - and even if it IS as low as 22%, that still makes it fairly normal for people to have a diagnosis and to be in some form of paid employment.

It's not as though we're talking about 1-2% of people managing a job. Nearly a quarter of all diagnoses is still a lot of people.

The ONS is the best we have and Buckland the most up to date.

200k is a huge amount comparatively.

@Willyoujustbequiet yes, and the ONS is only based on data from 200,000 people.

It's not a conclusive set of data based on every single adult with an autism diagnosis.

No my info is from the Buckland review and the ONS.
I doubt there would be a more accurate source.

@Willyoujustbequiet that statistic is based on self-reporting though - it's not an official percentage based on official diagnoses. The data is also only based on the responses of less than a quarter of a million people.

It's not accurate.

It's not that normal.

Only 22% of autistic people are in any kind of employment and they have the biggest pay gap of all disabilities.

The original article said that the cost was based on the highest need cases, so not the late diagnosis, can mask as normal type of presentation, but the costs of care needs for people like my family member who needed support with everything. She lived in supported accommodation with caters 24-7 so obviously that comes with a cost.

As the article is over ten years old the current cost is likely to be higher, especially when accounting for all the things mentioned here, like hit to parental income if having to give up or reduce work etc.

I agree with your observation of the leap, but I'm not sure the subtext is there.

Parents who realise when their first baby is born that they have passed on a genetic condition might wonder if subsequent babies would have it and whether they have the resources or support in place (or whether the government/ local authority offers support). I don't think it's a case of eugenic thinking if they decide not to have another.

The families I know who have a child with SEN of some kind (from Downs to rare genetic conditions) who have gone on to have other children are families who are comfortably off and who have strong extended family networks.

It's different with autism of course, because of the later diagnosis. But even so, stopping at two is something I've observed. Two children is a pretty average family size in the wider population, however - there may well be many families where parents would love to have more than one or two children but they can barely afford the children they have.

Lack of support for families across the board is a major problem. Childcare costs are crazy. Housing costs are ridiculous. But yes, support is especially crucial for families whose child has SN, and I agree with the posters who remarked that local authorities spend more on dodging responsibility than providing support, and set this needs to be changed.

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/

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.

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.

Absolutely this

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.

@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.

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"

Never thought of this before - so true!

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 🤷‍♀️

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.