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?

Yes absolutely, sadly this is often the case.

It’s not at all 100% across the board.

that said…

If you have a think, can you work out why it might be absolutely fine (and expected) for 100% of people who present at a private diagnostic clinic to receive a diagnosis? Think about the subset of the population who might present at a clinic…

DH has been so much better since he’s been wfh. He’s been pleasanter to be around, and his stomach problems have cleared up.

My boys both know that if I fall under a bus they will need to keep an eye on him and potentially intervene. He receives a lot of hidden support.

Apart from anything else, there will be no one holding the line against the hoarding. I bet it would only take a year for the house to become inaccessible.

The US has adopted a rating scale between 1 and 3.

But the reality is the person in nappies has a co-morbid learning disability.

Many with high functioning autism work, especially if they female, because they mask so well. Until they burn out. The impairments can be social and emotional. That said he seems being self employed or working from home may be a better fit for these people rather than the office.

Exactly this and you can be verbal but in need of supportive living and high need services. You can also switch between levels of need throughout life. Some people would be in 1,2 and 3. It’s a ridiculous idea.

Yes I know the levels but I wasn't talking about that. There is a push to change the criteria in the next DSM as some people don't agree with the change between 4 and 5 bringing everything under the umbrella of ASD. They hope for revision in 6. It's certainly worthy of a conversation as there are those that meet the criteria now but wouldn't have in the past. Some consider that this is partially responsible for the increase in diagnoses.

Although comorbidities are more likely the higher the level its by no means a given. Its perfectly possible for an autistic person to need nappies without having a learning disability.

My son is having extensive assessments and stuff to do with trying to get him in a special school, also i get DLA for him

I've only just seen this thread but diagnosis of autism doesn't magically mean you get a 1 to 1. It's a battle to get any support at all and even harder to get into special education.

Do we know for sure that autism is genetic? I think it is... But having one autistic child doesn't mean they all will be. My eldest son is NT. My middle son is autistic, but we didn't know that until I was expecting my daughter, who is NT.
Knowing my son as I now do, we've realised my husband is autistic. He bucks the trend of the statistics here and has a well paid job- which he excels at because of his autistic brain.

But if I'd known before TTC my third child that my middle son was autistic, should I have not had her?? Wow.

As an aside, I'm not comfortable with the terminology of AS D. We use AS C.. condition, not disorder.

My son's autism is part of him. He has an amazing brain. Some things are harder for him but I don't consider him disordered.

Your GP friend is full of shit. I know people (adults and children) who have had Autism assessments by private clinics and told that they aren't Autistic and their difficulties are most likely due to trauma, Anxiety or OCD.

Erm yes they would. See also corporate lawyers.

Both are careers which attract individuals with ASD. Rigid thinking, interest in justice, high attention to detail and abilities to concentrate for long periods of time. Hello.

I agree with @Putthekettleon73 ASD isn't a term those of us who are autistic use. In fact, I'd go further and say neither is ASC. We are autistic people, it's who we are, not something we have. Even worse is when neurotypical parents say "My son is ASD" - no he's not, your child isn't a disorder, they are autistic.

Thank you. Yes I agree. We say 'our son is autistic". And he owns it and is proud of being part of that varied community. I never personally use ASC but it's a bit less offensive than saying he has a disorder. I've learnt a lot about autism but still learning.

What people also don't understand is how wide the spectrum is.

You have your Sheldon Coppers at one end, who are absolutely more than capable of working, no mobility issues, no care issues etc.

Then you have the brother in the care home in Love Actually at the other end. 24/7 care, little mobility, absolutely no way could he work.

It's really damaging to say autistic people can't work, because many can and do.

It’s not only genes, it’s also neural folding

The idea is to provide appropriate support and input for the child from birth and to have a much greater impact in the first year (clearly this would not work in the UK system with its current resources). The scan would be too late for termination in many of the countries researching this; that isn’t the focus.

A bit of a tangent but I'm absolutely overwhelmed by the cost implications of raising a little dude who is ND. The cost feels all mine, none of it the state ( yes kids are our responsibility I know) but with something like Autism and the current state of services the hidden costs are big.

Because the NHS refused to assess, we paid a few thousand for assessment. Because the diagnosis is privately, follow up psychiatry review now private. Looking at ADHD meds , this will be private. Will the GP take on costs? They have zero obligations and can say you went private so why should we? ( Because you refused to assess you absolute xxxx) Anyway 🤦😆

Then we have all the school stuff and I know I'll be forking out more and more.

I understand again that we must pay for our own kids but the ' drain' financially with the group of ND kids who are in this category ( level 1) is very hidden. I don't see the school doing much either but I understand time wise it's more resource intensive for teachers in mainstream on occasion.

This subject has come up alot on MN and every time it just demonstrates that the terminology isn't sufficient to convey the breadth of the spectrum. I was saying this same thing about ASC as many don't feel disordered just different. But then another group would step in saying that this undermines the huge struggles of many, including those who ' pass' as having minimal struggles.
It's complex.
We had another thread here where some poor lady was being berated because she's Autistic and didn't feel able to work right now. We had lots stepping in ' I'm Autistic and I work'. Not helpful to her. It reminds me to try avoid generalisations which I can fall into.

@Tittat50 Have you applied for DLA. We got it for both our 'level 1' kids. It's well worth wading through the paperwork. The cost to families is HUGE and it's often the cost to women/mother's that's the highest. Of our friends with autistic kids only 2 work full time and it's incredibly difficult. Both can afford private school and the wrap around care in one safe, familiar place is the only thing that makes it possible. Lots of our 'level 1' kids won't tolerate being shuttled around even to a childminder. It's too many transitions.

We already know that having 1 autistic child vastly increases the chances of having a second. We also know birth spacing matters. But this information is not made as well known as it should be. Women should be empowered with all the possible info before they make a choice to have another child. It's easy to look at a tiny toddler and think this will be fine. It's much harder when faced with a school refusing 11 year old who is melting down and chucking chairs to have the time to give younger siblings. I feel quite strongly in giving women as much information as possible to inform their family planning.

@Pelot I never thought it would even be a possibility with a child who is in mainstream school and not ' appearing' to have issues. I think this is worth looking into and I appreciate the heads up.

I can't and won't have any more children ( too old and disabled 😊). I find the whole concept of having children terrifying now. I don't understand how young women are so optimistic. It's good they are really. But if there's a child with any sort of additional need it's so scary because the help is not there. I know many have much more to manage resource wise than I and are not accessing enough help.

The point you make here though is so spot on. I wonder how many people have this conversation.

where do you get that figure from???

@Hurrayakitten

www.lse.ac.uk/News/Latest-news-from-LSE/2017/01-January-2017/32-billion-cost-of-autism#:~:text=A%20major%20report%20authored%20by,people%20adequately%20in%20the%20UK.

There was an interesting mention of head size which caught my eye and sent me off looking.

Apparently a head that grows faster than usual in infancy then slows down is associated with Autism.

APPEAR to function well.

I don't function well, but I put on a good show of doing. It's called masking.