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?

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 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.

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.

@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.

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

@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.

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

200k is a huge amount comparatively.

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.

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.

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.

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.

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.

That 22% figure presumably doesn't take into account that many autistic adults with lower support (obvious) needs aren't diagnosed. Looking at my family I expect the majority are autistic and all work in STEM areas which are notorious for attracting ND people.

It's only for those with a diagnosis as far as I'm aware. It wouldn't be as accurate otherwise.

My husband’s family are clearly ND, to modern eyes. One wants to seek a diagnosis for their child, but her DH disagrees. One has never left home. His boss has raised the possibility of autism with his mum, but she doesn’t know what it is. She has had massive mental health issues which we now realise could well be caused by unsupported autism. The other two brothers are doing ok, but have no social life, limited diets and limited capacity to adapt to changes.
None of them have a formal diagnosis. All of them work though in some cases at a level far below their education, and in one case I would say it’s his employer’s support and integrity that has kept him in work. He’ll struggle when the boss retires and shuts the business down.

So the 22% isn’t necessarily a useful statistic about autism and employment.
It will be in future, when entire families like DH’s won’t have slipped through the net.

Jeff or Jenny in account may outwardly be functioning well in the world but actually that is masking and it internally ruining them.

This whole concept that you can lower the cost of Autism by early screening or spacing babies is crazy to me. Autism isn’t cancer, it’s not fixable with a pill. It’s a life long condition.

What really would help is society changing to be respectful and adaptive to ND needs so we’re not constantly dis-regulated by being in the wider world.

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

Sure, I just don't think it's helpful to take them as gospel.

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.

The odds are definitely stacked against us, but equally I'm not convinced 22% is an overly small percentage. It means that, at a minimum, a quarter of adults with a diagnosis of autism are in work. That's not a number to be overlooked when we're talking about autism as a whole.

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.

Nothing is typical when it comes to autism though and I think that's one of the issues. You can be very high masking with a job and a family, but that doesn't mean your diagnosis is any less valid or that you don't still have numerous struggles.

There are still far too many people who don't believe autism is a barrier for those of us who can cope with some elements of "neurotypical" life.

Totally agree with you @myplace - I suspect there are large numbers of people out there with either no diagnosis, or who have one but are only or to stay in work as they're self-employed, work for family or have very supportive employers.

Unfortunately the days of "a job for life" are very much behind us and I suspect a lot of people will end up in their fifties unable to find new jobs when they've previously been " fine" thanks to great support systems.

We know what's effective in supporting autistic people - the problem is the lack of funds for mental health, education and social care, the lack of service co-ordination, the lack of diagnosis and treatment for co-ocurring conditions that often accompany autism - learning disability and mental health issues.

OP linked the research on birth gap completed with a particular sample of families in Scandinavia. This research has been cited by a US organisation promoting bio-medical model of understanding and treating of autism and ABA as well as Autism Speaks, advocating autism is treatable. I'd consider the sources of information before engaging.

What I find really quite depressing is the number of high-functioning individuals who have to essentially diagnose themselves to get support from a GP.

My own medical history is hugely reflective of an individual who has mental health difficulties, burns out and recovers, only to fall back into the same cycle several years later.

None of my doctors were able to see the problem until I did my own research and basically wrote them a list - then someone said "oh, you're right, everything on here screams autism". It shouldn't be like that.

Yet it's incredibly common for people like me (especially women) to be misdiagnosed as depressed or anxious, medicated and missed completely.

But the barriers are why statistics can be helpful. It's an easy way to demonstrate that it's not a level playing field.

I don't take them as gospel. I have concerns about misdiagnosis and the ethics of some private companies but I still think the stats are useful.

@Willyoujustbequiet I'm not saying it is a level playing field though, I just think the statistics are inaccurate and lead to people who are "high functioning" being denied access to the support they're entitled to.

There are so many posts on this thread alone saying you can't really be autistic if you're married, or have children, or work - it's just not a helpful stereotype to emphasise.

There's a movement in the US to split the diagnosis as some argue that its so wide as to render it useless. I have some sympathy with that view. Clearly someone who is wholly independent, successful career wise and who may be married with children etc..is not in the need of the same level of support as someone who is non verbal, in nappies etc.. and incapable of ever living independently.

I can see why there is a push for change.

Things also change over time. The pattern in my wider family seems to be 'coping' until late 40s/early 50s then breakdown. I've got several relatives that held down professional jobs until that age then basically ended up housebound with severe mental health issues.

My own symptoms are definitely worse than they used to be. Having kids is such a sensory nightmare. But I've also found I'm far more black and white than I used to be and more anxious about travel or socialising. I'm only early 40s but it does worry me a bit for my future. I never understood why my relatives ended up like they did but I totally can now.

Oh I don't necessarily disagree @Willyoujustbequiet but I do think there's a danger with that - too many "high functioning" people get overlooked and dismissed when in reality they internalise their difficulties instead.