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?

@TangerinePlate Older parents especially fathers and obesity in Mothers increase the risk as well as genetic predisposition. Research is ongoing. As much as diagnosis has improved and it’s acknowledged. The age of parents and people being overweight are both on the rise.

Indeed! I know a lovely lady with learning disabilities who has been with her partner for 15 years. I went to her birthday party, and most of the other guests also had LD due to the groups she goes to. A lot were there with partners too.

Full of confounders. Your GP friend should know better.

For a start, people paying to access private assessments are going to already have a very high index of suspicion they are autistic. Some random neurotypical person with zero concerns is unlikely to turn round one day and decide to drop thousands of pounds on an autism assessment just for the hell of it. Of course private providers are likely to diagnose more ASD: their intake isn’t representative of the population.

Likewise, to be able to afford a private diagnosis you will likely need to have a decent income. Be default, these people are likely to be the ‘high function’ (for want of a better expression) autistics who would have been missed in childhood. Private providers aren’t dealing with severe autism because it’s already long been diagnosed. Of course they are seeing the more nuanced cases.

I’m sure my mother’s side has Asperger’s undiagnosed I don’t think it’s the same thing as autism. They’re extremely intelligent for example with math, my brother taught himself algebra when he was no older than 8. He taught me how to speak, I was speech delayed. My mother’s diagnosed as bipolar but it’s extremely accurate. She hallucinates and has violent aggressive outbursts because of her trauma and has acted out her abuse. She’s like a different person. Too much info about myself tbh but for a good cause

Yes it's challenging when there's undiagnosed ND in 2-3 generations of families. Some get the 'quirky' type and come from high achieving families with resources to support them. Others seem to get the incredibly impulsive, risk taking type with chaotic parenting and challenging environments. For these kids ADHD medication alone will rarely help without therapeutic support long term (especially because of non-compliance with meds). In some cases I have seen medication have a really profound effect which has given kids a chance, especially when paired with school and therapeutic support.

Something being genetic isn't the same as something being inherited. Something can run in families without impacting every family member.

In terms of how it impacts people - it's because autism is a spectrum. And it's also the case that many high functioning people would have previously been either overlooked and seen as "rainman" type characters, or been diagnosed with Asperger's, which is no longer a separate diagnosis.

Thousands. We are not well off in any way.

I know it's probably not near what others with more support needs are paying.

@overthinkersanonnymus we have at least 20,000 genes. The interplay of them results in the individuals we are. Some combinations result in some features. In any family the genes each child gets a selection of those available to each parent. They combine in different ways. Add in environmental factors and the variation is almost endless.

I don’t think it’s surprising at all.

it has sky rocketed because professionals are getting better at recognising it. There is also greater awareness.

also - a lot of people still don’t really understand what autism looks like, so people probably don’t realise there are probably quite a few people in their families or social circles who are autistic, but instead were considered ‘eccentric’, anti social, shy or disruptive depending on how their autism presented itself

Those costs would be included in the calculation I think. It’s money you aren’t spending on having a new kitchen, for example.

I think this is so, so true. Especially the bit about jobs for life, and never leaving the familiar.

I have a family member like this (IL, so met them later). Same job working with their hands for life. They weren't very communicative, so I always thought they were a bit odd. I can look back with what I know now and it all makes so much sense. I'm sad about that in a way, because with the understanding, I could have related to them so much better. It must have been hard for them not understanding themselves, more than anything. Yet they successfully navigated through life.

Back in science class in school, we did a little table were mum was x-axis, and dad was y. Mum had 2 blue eye genes, and dad had 1 blue and 1 brown. Depending on the combination of genes from both parents, their child would either have blue eyes or brown. But they were more likely to have a blue eyed child. My brother has blue eyes. I have brown.
Sorry I am explaining it badly. If anyone can remember doing similar in school, then feel free to do better than me!

Have you thought why that might be though? No one randomly just thinks they might be autistic one day and pays hundreds (or more) for an assessment on the off-chance. You need to be absolutely certain to go to that expense and also the effort of multiple appointments. Corroborating evidence is required too.

Yes, there has to be a good reason to go through the trouble and expense. I won't do it for myself for that reason. It serves no real purpose for me, though I know I'd get a diagnosis.

If it is genetic, its the same as many other genetic issues, not every child will have the condition,but they may carry it. Similarly with Down Syndrome which is caused by faulty genes, although not usually inherited, the level to which the individual is affected can vary considerably.

It's not a disease and therefore earlier detection wouldn't make it cheaper in the long run.

I think there should be different labelling classifications.
It never ceases to amaze me that a non-verbal adult in nappies and and someone who works full time and manages to look after children successfully have a condition labelled the same.
Yes, perhaps comorbidities could determine different names?
I do feel it can be tricky for carers of those unable to care for themselves, or speak or keep themselves safe and those who are capable of doing those things and more to exist in the same spaces. It’s not surprising, their experiences are quite different.

Exactly, you can't just rock up and get diagnosed. It also costs thousands of pounds in many places - who is going to do that unless they're pretty certain they're going to end up with a diagnosis at the end of it?

I'm going through diagnosis on the NHS and they sometimes refer you privately. My GP and psychotherapist both said that the vast, vast majority of adults who get referred end up diagnosed because they wouldn't be referred if the GP didn't believe they had autism to begin with...

Not true at all. For a child to be diagnosed with ADHD there need to be 6 impairments in more than one setting. My DD went for a private diagnosis and despite hitting more than the required 6 criteria at home, her teacher could only describe her hitting 3 at school, because she is bright and masked her struggles.

They wouldn't diagnose her. They accepted she likely had it, but they couldn't give her an official diagnosis. So, no, not all private clinics have 100% diagnosis rates and your GP friend should be ashamed for peddling such falsehoods which devalue those with an accurate positive diagnosis.

@VivaVivaa im so sorry. Wanted to say I understand how you feel that way. Also sending a big hug.

my DS is AuDHD, but like @cookingthebooks DS, he is verbal and in mainstream school.

He is exhausting, and family life is very stressful. I love him dearly but sometimes I think I wouldn’t have had kids if I had my time again.

I get annoyed at all these overly positive comments about neurodiversity and talk of superpowers.

There were labelled differently, but people got up in arms about the term Aspergers because of the Nazi connotations.

I would love to be assessed but there's no adult pathway on the NHS here and I can't afford private. I have an AuDHD child and another awaiting assessment for autism. I am 100% certain the second child is autistic but they are at the start of a 3 year assessment process (no right to choose in Scotland). If i am able to save up for private assessment I will go down that route.

If be willing to place a huge bet on me being AuDHD too. I have a job and kids but there are hundreds of ways it affects me every day. I had no clue until my son was diagnosed but now it makes perfect sense.

@PreferMyAnimals @soupfiend @myplace @VivienneDelacroix @biscuitsandbooks Thank you for taking the time to explain.

I have little experience but a friend has a 19 year old son who can't talk, wears a nappy, is highly aggressive with a diagnosis of autism and I don't want to add to her stress by asking any questions, so thank you again for helping me understand.

I recall seeing a comment on there where the poster was "shocked" to be given a diagnosis of ASD.
Now, don't people suspect they might be, then get assessed? It is not like you have a general test like a blood test, that can pick up all sorts, and you get told you have a B12 deficiency or something you were not expecting.