Are we setting autistic children up to fail?

[JandJay]

I say this as a mother with 2 autistic children.
my youngest is 8 but my eldest is 25.
Thinking about my eldest at school there was so much understanding and kindness, exceptions were made for him and he was accepted for his differences.
At work there is no such thing and life has been tough for him.
Our daughter is also autistic, she’s only at primary school but has the same understanding and supportive approach at school which makes her feel accepted right now but I can’t help thinking it’s only autistic children that have that support and understanding and once they are adults they are not seen as the vulnerable children they once were and have a very harsh reality when they held to the expectation of everyone else as adults.

I used to think it was good that we had SEN in schools now, especially as I was undiagnosed and had a terrible school experience, i’m not saying that was better but being an autistic adult is hard, are we not just shielding them from the reality of adulthood?

Yet we have a higher diagnosis rate than almost any other country? Pull the other one.

Something can be "underdiagnosed" if you've widened the diagnostic criteria to a point where a huge proportion of normal human behaviours are included.

Nothing in my post is incorrect. Diagnostic criteria have been widened hugely (read about it, its interesting) and it is much easier to get a diagnosis now than it was 30 years ago.

Incorrect again-our autism rates are 1 in 100, lower than USA and similar to other developed countries.

It’s hugely underdiagnosed in women and girls and wait lists are insane so it’s very difficult to get a diagnosis. Private is £3k so out of most people’s pockets.

Re adhd the recent government taskforce highlighted how underdiagnosed adhd is in the uk too.

www.england.nhs.uk/long-read/report-of-the-independent-adhd-taskforce-part-1/

The bar is high to get an autism diagnosis and difficult to get one-hence our low diagnosis rates particularly in women and girls.

I think in general kids used to be raised to understand that "life is tough but so are you" and that this tolerance for discomfort is less present today. I think it's really really important that we bring it back.

But I don't think we should bring back this attitude for autism specifically or only. Support is probably needed (and the kind thing to do), in addition to this general tolerance for discomfort.d

Yes agree that some of this comes down to parents and whether they are seeking genuine support for their child or if they just want what everyone else gets.
We went through a phase of classrooms being like toy shops - so many children with fidget toys. If you took them away the parents were straight in with the my child needs this and other children have them so why can't mine.
Chewies is the latest. They seem to have become a fashion accessory in some year groups.
And the non uniform for sensory reasons also becomes a choice for some children. Some who are unable to wear the uniform will come in plain items where the parent has tried to match the school colours or at least kept it simple with dark colours. Some turn up in various items - usually designer, various materials, which does make you question whether it is a sensory need or just they don't want to wear the uniform (which primary school generally accept, secondary don't, therefore parents create a problem for themselves).

17% of children need SEN support in school https://explore-education-statistics.service.gov.uk/find-statistics/special-educational-needs-in-england/2024-25

That's not underdiagnosis.

SEND includes everything from high medical needs; additional support for reading, writing, maths, phonics etc; disabilities; MH;conditions such as adhd, autism, dyspraxia, sensory processing, dyslexia etc

That figure is not just autism!🙄

Didn't say it was.

SEN diagnoses are through the roof compared to other European countries.

My autistic DD went to a lovely primary school where she was very well supported and then a huge comprehensive with not much SEN support. She had a breakdown at 13 and was so mentally ill she could hardly function. It was horrific to be honest. I would therefore argue that the extra support was v necessary for her. Fortunately we managed to find a v nurturing school after that and she was v mollycoddled there which essentially nursed her back to health. She is now at a regular small college with some SEN support but is coping better thank goodness. I do worry about how she will cope with a job though. Any amount of pressure and she crumbles. Maybe that would have been the case regardless but she is very used to special treatment. Am not saying she doesn’t need it but I do know she won’t get it in the workplace and I really worry everything will go wrong again. I don’t know the answer.

Comparisons are hugely difficult due to varying definitions and methods of reporting across countries.

Also this thread is about autism.

I do think the OP asks an important question. I guess this is what the current SEND review is implying although with a more financial skew: we spend billions on Send provision without any meaningful narrowing of the gap in educational outcomes or life chances between those with Sen and those without. Case control matched children (same level of attainment in year 6) in special schools also do worse than thise with Sen in mainstream. Of course educational outcomes aren’t the only factor but they obviously have an impact on life chances.
as the parent of a child with asd who had a tough time at school, was refused an ehcp which we didn’t have the mental energy to fight at the time, I just think there are no “fixes”.
my experience as an employer however of managing employees who had self diagnosed with asd, sent rude emails, refused to do some sort of work and frequently went off sick, all of which were supported as per HR, stood in stark contrast to what was accepted behaviour by the school of my son - which is perhaps a different perspective to that outlined in the thread.
my son is doing ok in a work environment, I am so proud of him and he is incredibly “resilient” although I do hate that word but maybe because he has had to be and my heart also breaks for what he has experienced - which may or may not have been better with an ehcp. We can’t as parents ever know the other path trodden and we are all just trying to do our best in what can be such an exhausting process where you always blame yourself for not doing that, or doing that when you should have done something else.

Yes we had the lead CAMHs psych tell us our DD’s severe and expensive MH difficulties were hugely due to dire provision in school. She then experienced severe CPSD as a result of her difficulties and treatment which made things even worse. Ironically provision would have been cheap and easy to do. Now she is at a college with excellent SEND provision she is thriving and has pushed herself in so many ways. She will also get qualifications that will enable her to start contributing to society.

No, i think supportive workplaces need to be more common.

I have Autism, spent my young adult years in supported living.

I found an employer that is a saint and truly adapts the workplace. The key is, what makes it accessible for me..actually makes it easier for those without additional needs too.
So everyone is happier as the hybrid working, flexible contracts, support is down to the individual needs whether they have a disability or not. The aim is to make the individual execute their role to the best of their ability..and the more comfortable and supported they feel the better the results.

We are completely adapted building wise too, I have colleagues who have mobility issues, so have stairlifts for wheelchairs.

Thats the thing though, I don't know why we are so rigid with workplaces as i don't think they actually serve anyone, even those without SEN, they just grin and bottle it.

My colleague has no SEN but the difference adaptions have made for them too is very noticeable..its a happier environment over all.. From a business perspective, less staff turnover, lowering sickness rates, hitting targets..so it is profitable to actually have more content employees 🤷‍♀️

This. I think you're asking the wrong question OP

My 20 year old son is autistic and has given up trying to find work. He just claims UC and pip and volunteers at a charity shop which he's done since it was part of a college course.dhile he was looking for work he rarely got interviewed and once or twice an employer would ring up to offer him an interview but either he didn't understand them or got confused (if this happened while I wasn't with him). The charity work suits him as there's no pressure or expectations and they all love him there

Well I'd like to offer a different perspective.

I am autistic, and therefore was an autistic child. I am late diagnosed, although all the signs were there from being a child.

I didn't get extra support.

I entered the workforce, and for the first few years also didn't get support.

Then I was diagnosed, and I asked for support but by then my support needs were far too significant for a workplace to reasonably accommodate.

I had experienced a significant skill regression. I didn't know it was possible to lose skills you have automatically acted upon most of your life but I did.

The fact is no amount of early support will stop autism being a disability. It might lessen the impact, it might sustain someone for longer, but if you're autistic you will always be autistic. Removing social scaffolding early doesn't create resilience it creates trauma.

We will always have some social, communication and interaction deficits that make the corporate working world a nightmare for us. Our facial expressions might not match our feelings, our tone might not match our words, we might be less verbal, or overly verbal as we outwardly process information and that can be very grating for others to cope with, we might need to understand why something needs to be done in order to do it as opposed to just being told what to do and this can be seen as a challenge on authority or not respecting hierarchies, simply because we are bottom up thinkers, we might have sensory issues that cause us daily discomfort that others around us cause and insist it is for their comfort that they must, like lighting and music and windows being open or closed or eating smelly foods, or uniform policies that make no sense or presenteeism for the sake of presenteeism. It might be communication going off script and needing extra time for processing information with imposed deadlines that you just can't meet with the high pressure.

There's nothing you can do to an autistic child by adding or removing that social scaffolding that makes the working world more tolerable, but by keeping support in place when they are children, you're significantly reducing trauma which allows them time to gain skills that could benefit them later in life.

https://www.tes.com/magazine/teaching-learning/general/uta-frith-interview-autism-not-spectrum

That's an interesting article.

I wonder if Uta has considered that by the 90s, and certainly by the 00s that institutions were largely closed down and certainly all closed down by the 00s, and so parents felt safer coming forward with their children's struggles and wanted to understand them better without the fear or stigma of having their children removed from their care.

Remember “the workplace” isn’t some fixed entity that remains the same over time. As current ND children grow into adulthood, their NT peers grow up seeing integration and acceptance as normal. This should lead to a naturally more accepting workforce, who will shape the future workplace to use the strengths of ND thinking patterns.
ND children who understand their accessibility needs will find it easier to ask for what they need, and it will become more normal to offer accessibility tools in more roles.
My ND DCs have found work that suits their strengths and interests (hospitality for one and theatre tech for another), they may never be rich but they are happy and fulfilled in their careers and make enough for a good life.

I’m not buying this whatsoever.

If a child has a disability, they also have an EHCP, which has a whole section dedicated to preparing for adulthood - including employment, independent living, community inclusion, and health.

As our son has high needs, that is discussed at least annually at his EHCP review already, he’s 9. The focus on that will only increase as he gets older.

As parents, it’s also our responsibility to teach him that the world won’t always “bend” for him, as much as maybe he’d like it to. He’s taught already that he has to wait, he can’t just shout and demand things, sometimes he will have to do things that he doesn’t want to, or not be able to do things that he does.

I’ve always assumed that’s what we were all doing with our autistic kids, trying to enable them to be the most independent and socially integrated adults they possibly could be.

As far as I’m concerned, we’re actually not teaching them that the world will always have their corner, because we don’t live in a dreamland and it won’t.

I do see your point. I'm a sendco and my son is autistic.
I think it's really important to allow your child to experience tricky situations and challenge. They need to develop coping strategies and problem solving. I do think sometimes there is the danger of swooping in and supporting straight away.
That said, everyone if different and some very high needs children do need 1:1 because they are in the wrong environment. Smaller school and smaller classes would go a long way to reduce the need for so much 1:1 support. Others desperately need a highly specialised education.
Those in mainstream that will go on to work do need a transition plan and an understanding that they need to develop self help skills in order to manage life in adult hood.

Not quite the same but my son is severely dyslexic and dyspraxia also has very mild autism / Adhd - more social stuff
at school he was given extra help and time to
do stuff and a scriber for his exams and he had private dyslexia lessons twice a week for many many years

he’s grown up now
but I think that in someways because I didn’t really make any real allowances for him he has done really well

I guess what I mean is when he was in primary / senior school
I made him join clubs after schools activities holiday clubs to over socialise him and give him every day skills of mixing with people
he was captain of his schools rugby team and played rugby right up into his early twenties
I left him go on school trips and abroad with his school for a rugby tours
if he would have had his way he would have happily done nothing

he was one of the last year of kids who could get a part time job at 15 while still at school and he worked part time in MacDonalds from 15 -20 while at school/ college which gave in valuable life skills and I think it’s really bad that young kids can’t do this now as it teaches what work is all about and McDonald’s is very inclusive for work

he also learnt to drive ( took him 4 attempts to pass )

he then did his SIA course to get a door badge and has worked full time ever since In security and when he has to write a report they allow him to dictate into a dictator machine and it gets written up
An now with AI it’s even easier for him to write up his reports

he’s bought a house with his partner & honestly when I think back at the mess his bedroom was in when he lived at home I didn’t think he would manage to leave home but he has and he’s been very successful

i also think that back then phones and social media was as crazy as it is now and I think that makes a massive difference to kids in general in terms of being able to socialize with other people in real life

Its an interesting article but it doesnt really say stop supporting people it just says they might be better supported looking st things through a different lens and some support isn't researched yet.

Im not sure supporting a 'hypersensitive girl' from her article, would materially be any less support than an 'i have autism and mask girl"

The lack of research was something that really bothered me when we were doing my sons ehcp. It was hard to get evidence for why a strategy was suggested and its success rate.

Not sure how to vote so i didnt but:
I have 2 diagnosed DD with ASC
They went under the radar at primary school were diagnosed in mid/late teens.
Both fell apart in mainstream secondary
1 survived-just
The other crashed out and was out of education for over 2 years ( our LA couldnt find a school for her and offered no tuition) whilst we fought the system to get provision for her.
She now has an EHCP that includes occupational therapy, speach therapy and art psychotherapy as well tuition
She is learning how to recognise her emotion, how to regulate, how to communicate with others , advocate for herself.
This has been vital and life changing for her.
Having qualifications is important in todays world you cant get any employment without them.
But I do worry what will happen when her EHCP ends.
Atm I cant imagine she will be able to do a job, she did volunteer at a charity shop, which she loved but often has bad days due to poor mental health or burn out so couldnt reliably go. She really needs to pace her herself as she runs out of "spoons " quickly.
My other DD is at uni and has worked, she is a people pleaser , a perfectionist and masks, so her employers have loved her, but she completely crashes as soon as shes home, in bed hiding under duvet, mute, not bothering to eat.
I work for a local authority, they are shit at making reasonable adjustments , managers are disparaging about staff with disabilities. They want people to come and just do their jobs, not need any adjustments but more than that they also want their face to fit. They are very clicky.
So yes i wouldnt want either my girls to work for my employer.
Ultimately work is a contract you are contracted to do the work, AND" fit in" with the team. Employers arent really interested in anything else.
Having said that both DH and I are probably undiagnosed autistic ourselves and we have worked and raised a family. I think it depends how you "present" to the world.
Masking is considered a negative thing but in my early adult life I conciously studied behaviour of friendly confident people to try and become more like them ( probably not really fooling anyone lol)
I guess thats masking but its also a useful coping strategy.