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?

But surely that would mean workplaces are less likely to employ an autistic person if have to make more allowances
. If there are 2 equal candidates but one needs all these extra flexibility and the other can slot in immediately. What benefit to the business is it to employ the person that needs stuff rather than the one who can slot right in

I can't disagree strongly enough:

The only reason my ds is in employment and coping independently is because of the support he received during the last year of primary and secondary (he got given a special school place after being excluded from primary).

ds2 had delayed support and whilst he is becoming more independent he still needs a lot of verbal support and encouragement from us. He really got the support he needed only from age 15 and is consequently two years behind his peers educationally and probably longer emotionally.

My friends dd (same age) had a much harder journey to get support (withdrawn child causing no bother to the teachers) - she dropped out of school towards the end of year 7 and at the moment is not living independently or working.

All three children were academically able but just could not cope in a mainstream classroom.

The idea that the bar is 'high' is completely subjective. It is all predicated on the idea that there are 'normal' or NT people living their lives with very few struggles and any divergence from that is an example of neurodiversity. You then bundle up these traits into questionable packages, give them a label and set an arbitrary threshold and give out binary diagnosis. It's completely bonkers! We know the vast majority of people have ND traits and very few genuinely NT people exist. We also know that BAP exists and someone with this is as likely to have more in common with someone that just meets the threshold for an autism diagnosis than the person who has just qualified for an autism diagnosis will have in common with a non verbal, severely disabled person with Autism

Very few kids are fully supported at school. The ND/NT distinction needs to be thoroughly examined and we need to acknowledge the grey areas which span those with and without a diagnosis that have obviously lower needs than those most impacted. The fact that we don't even have the language to really distinguish between people with different need levels with some of these conditions should be a red flag in itself as should the fact that we have moved to a weird binary culture where lots of people genuinely believe that a completely NT person is the norm when it very much isn't.

The reality of adulthood hits everyone.

Managing expectations is the best thing we think we can do to prepare our teens.

This is already what happens. Discrimination in employment is already rife.

Many autistic folk withhold that they're autistic until they've already got their foot in the door for a job for this reason, but this comes with issues too. It can create a long arduous and wholly unnecessary battle for reasonable adjustments.

And the discrimination in employment isn't limited to autistic people. Employers always have shady ways of choosing non disabled candidates over disabled ones. If you're visibly disabled you can't hide your need for adjustments until you've got your foot in the door.

However, simply because it is inconvenient for employers to make these adjustments it doesn't make the need for them disappear.

Quote away about the law etc, doesn’t change the reality of LAs having no money.

What @Happytaytos is suggesting here is, if a Local Authority is facing budget challenges, they no longer have to meet their legal responsibility to provide appropriate education for young people. I can only assume that this would extend to all pupils and not just those with additional support needs. That Local Authorities can decide to reduce the number of days of education they provide, or cut teacher numbers to such a level that class sizes extend to 40. Perhaps they can target heating and lighting and only provide that for certain parts of the day. All of these things would have the same impact on mainstream pupils as cutting ASN support does for disabled students, but that would be fine, because they don’t have enough money to meet their legal responsibility.

Or, are we to assume we only want to reduce the education offering for young people with ASN? That these students should leave school with less education, fewer qualifications and less opportunity to go on to a positive destination? That we are absolutely fine with them then being far more likely to need support from adult services, to have to rely on the benefits system for their entire working life because they are unable to access a decent job with a decent wage? For them to have to rely on pension credits because they are unable to build their own personal pension due to a lack of finances? We’re happy as a society to look after them and won’t target them as adults to reduce Government budgets and label them lazy and workshy?

No, thought not.

I find this line of argument difficult because lots of children with SEN won't go on to work even with a very expensive education. Only 5% of adults with learning disability are in paid employment. Disabled people in general only have a 50% employment rate compared to 81% for the general population. People's worth isn't defined by their work, but obviously we need people in employment to fund those who can't work.

So is it equivalent to lower SEN provision for some children versus lowering general educational provision for all children? I can see as a parent that you would feel it is. Ethically I can also see the argument. Economically though, the two would have very difficult outcomes with the latter causing huge financial issues that ultimately would impact the most vulnerable the most in the long term. There is no easy answer. I wouldn't bet against most people though favouring a cut to SEN services over a cut to general education provision if it comes down to it which it increasingly looks like it will do.

This is a huge concern. Reading all of your posts on this thread, it is clear to me why children with ASN are being failed at school. That someone with your attitude can consider themselves an “excellent“ teacher for children with ASN, is both baffling and worrying.

You accuse young people who ask for the movement breaks they are supposed to have scheduled, of taking the piss. You accuse parents of having too high an expectation of how their children can reasonably be supported, whilst also stating that their legally protected right to adjustments in education can be set aside because of a lack of money.

You suggest that a child with ODD is simply choosing to misbehave and their parent advocating for them is wrong. You call them entitled yet strangely feel they are entitled to absolutely nothing.

You say things like “everyone masks” to some extent in life, as if the sheer effort and exhaustion it takes an autistic person to deal with the constant bombardment on all their senses, is the same as an ND person having to plaster on a smile when someone is rude to them occasionally. That pupils with ASN, who face challenges you can’t even imagine, just aren’t resilient enough to deal with them.

If you genuinely are an ally for young people with ASN and their parents who have had to fight for any crumb of support from the dictation system, you wouldn’t be coming out swinging for every person on this thread who has raised concerns about your attitude. You would be willing to listen to their concerns and educate themselves on where you are going wrong. You could start by not taking one or two examples and basing your opinions of all young people with ASN on them.

I have wondered about whether the absolute negativity towards masking is helpful.

My ex husband is autistic. As a young child he was non-verbal until 5 but hyperlexic, no friends in primary etc. When he was a teenager he taught himself social skills very deliberately by mimicking others and reading books etc. You couldn’t now tell on meeting him that he is autistic or not immediately. He has a £150k job as a programmer where he does have to deal with people and internal politics.

I doubt he would have that job if he couldn’t mask. And eventually the masking becomes second nature. But it also takes a toll to live a “normal” life and he has had near breakdowns.

I have a family friend who is very severely autistic but who has learnt certain scripts, like what to say when you go to the cafe, how to greet someone etc. This is sort of masking but does allow him to do things he couldn’t otherwise.

So I think some balance in the approach to masking is sensible. Just teaching social skills probably allows a lot of autistic people to live independently as adults and opens up opportunities for them.

There is far more to be considered than whether someone goes on to work or not or be independent or not.

Providing the right support as a child can be the difference between:
Needing a residential placement as an adult or not.
Requiring a secure placement or not.
Needing 2:1 (or more) support or 1:1 as an adult.
Needing full-time care or support for only part of the time.
Someone being eligible for CHC as an adult or not.
Someone being a long term hospital patient as an adult or not.
Someone being in contact with the justice system or not.
Even at a smaller level, it can be the difference between someone being eligible for SMI disregard or not, or a concessionary travel pass or not, or hospital transport or not…

Not providing the support DC need as children and young people costs more in the longer term.

EHCPs don’t contain targets. They contain Outcome in section E. A small but important difference. A target is an aim. An Outcome is the result of provision.

A diagnosis isn’t required in order to be classed as having SEN. The rate of SEN hasn’t increased as much as some people like to portray. The most recent statistics released last year show 19.5% of pupils have SEN. In 2010, so before EHCPs, it was 20.9% or 21.1% (depending on which statistics you look at - I think it is a rounding issue adding up SA, SA+ and SSEN). In 2005, it was 18%. Going back several decades to the Warnock report in 1978, “some 20% appeared to need some form of special educational help. This may even be an underestimate…”

You accuse young people who ask for the movement breaks they are supposed to have scheduled, of taking the piss.

The kid literally is taking the piss. You're not there in the room and you can't see it. But you have to accept that SOME kids do take the piss, ASN or not.

The movement breaks are scheduled hourly. The kid then shouts out for another one 2 mins after being put back in the classroom. That is taking the piss. It also hugely disrupts everyone else because when the kid returns, they need a 1:1 explanation, stopping me supporting the other 28 children.

Nowhere have I said that all children with ASD are XYZ. My provision for children is excellent, I regularly get thankful parental emails for going the extra mile, supporting students in and out of the classroom. Luckily I don't need to be validated by your opinion of me.

Those statistics you cite are an outcome of the system as it is. The reason only 5% of adults with a learning disability are in paid employment is because of an attitude that they can be exploited to provide free labour. That they can post on social media about the person with Down syndrome working in their store is amazing, whilst also shafting them on pay and conditions. You also missed the statistic that 86% of those people want to work, that barriers in the recruitment process and lack of reasonable adjustments are the only reason they don’t. It isn’t that they can’t work it’s that they can’t get a job. There are always a number of people who will require lifelong support, but that number is way higher than it needs to be under the current system.

The same is true for the number of disabled people not working. It’s telling that a person who becomes disabled later in life is far more likely to be in work than someone who has been disabled all their life. Good old Harry who went through school and university, and got that job as an engineer isn’t going to lose his job when he becomes a wheelchair user after a car accident, but ask their employer to take on Harriet who had far fewer opportunities because of a lack of support, but is still very capable of doing the job and that’s a much harder ask.

I am currently mentoring a young person who has additional support needs. They are bright and capable but as they have progressed through high school their grades have dropped from getting all As to barely scraping through their prelims in 4th year. All they need is someone in class to sit with them when new concepts are taught, to talk them through it so it is solidified in their mind. At the beginning of this year, I provided a tutor for them, just for a few hours, to bring them up to speed in one subject. They went from getting a D in class tests to getting an A in their prelim exam. That’s all it took. Unfortunately, the school is blocking me from doing it again, whilst also saying they don’t need support in class. This young person had a goal of studying medicine when I met them 3 years ago. They have the capability to get the grades with some support, someone to show them how to learn effectively , to build the strategies they need to be able to do so with less support. After their preliminary results they have decided to go into childcare, because that is the one subject they did well in. This is not a person choosing to go into a low paid job which they love, it is a person who has been fighting for support, but is now taking the path of least resistance. They have real potential to break the cycle of poverty and chaos they have been raised in and improve their life chances, but without decent support, they will not get there. This person is not the exception, I see it happening all the time.

The negativity towards masking is driven by the far higher rates of total burnout and severe mental health problems that often accompany it. It's far greater among girls and young women who are 20 times more likely to attempt suicide than their NT peers. With 80% of autistic women remaining undiagnosed, and unsupported, by adulthood, this should concern us all. In short, the statistics, the facts rather than anecdotes point towards a great deal of damage caused by masking.

I say this as someone who is a successful professional who has masked my whole life without burnout - a 'coper' who has never really 'fitted in' though, with a daughter who has burned out for long periods, 3 times in her short 9-year life. Masking can lead to utterly devastating consequences until a diagnosis provides access to greater self awareness and understanding.

I dont really understand your stance. It seems to be that because some (or one in your class) take the piss and parents back them up, the whole concept of providing education support is wrong and setting children up to fail in the workplace?

I cant tell if this child has autism diagnosed, but let's say they do. The issue isnt that they have movement breaks- it seems to be how the breaks are applied and parental expectations around that. I wouldnt really view this as education support setting a child up to fail. Lots of children without autism have parents who have unreasonable expectations too. It feels more like a parenting issue.

Plenty of other people apply movement breaks appropriately and then seek out work that involves movement. So like many things I dont see why those children should miss out because some other people have poor parents.

Children need a supportive environment, but they also need preparation for coping with the big wide world.

Those statistics you cite are an outcome of the system as it is
Yes but we can't afford the current system so it's not likely that there is going to be a great deal of additional funding pumped into the system. Demand is spiralling and resources are going to be out under more and more strain. SEN, like health and social care, is an area with infinite need and limited resource. We need to be realistic and manage expectations accordingly.

I have a relative who is learning disabled and it is incredibly difficult. Realistically he, like that man in Waitrose, cannot do a job in the way that a person without learning disabilities can. He needs far more instruction, struggles with basic things like interacting with customers and finds it difficult to cope with change. In a world where it is becoming increasingly competitive to get even a MW job, where do people with learning disabilities fit in? I felt a bit sorry for Waitrose to be honest. If this man was like my relative then he probably enjoyed the opportunity to 'work' but it would have come at a potential net cost to the organisation due to the support he would need. They then get berated for not paying him as a regular employee. I can understand why lots of businesses just wouldn't even want to consider offering opportunities to those with learning disabilities as it's a very grey area about who is actually helping who.

It also sounds difficult with this girl that you are helping. How will she cope with a medical degree and a demanding career in medicine? Most kids don't reach their potential and there are many factors involved that are very hard to equal out. I am always outraged to see the difference Progress scores amongst different schools for example and the fact that it's almost impossible to get top grades if you attend certain schools. Do we let everyone bring in people to help them to equalise out the provision? I used to have a friend at school that needed me to help her to understand maths as we were both in top set and she really struggled. She didn't have SEN. Could she bring in a helper too? She often needed similar help to the girl you described.

I understand that and I’m sorry about what your daughter’s been through. I am grappling with it myself with having a probably autistic son.

But there’s perhaps a difference between an autistic child being taught how to behave in social situations (which many consider teaching masking) and a child just going undiagnosed and unsupported and therefore trying to fit in as best they can.

My son is doing social stories at school at the moment. One of my friends with autistic children thought that was teaching to mask. But the social stories are about things like queuing, losing a game, taking turns etc. In my mind they reduce his anxiety about these situations and allow him to remain in mainstream education and get on with others.
He would find school easier and could be more naturally himself if he didn’t have to queue or take turns or sit still etc. But that wouldn’t prepare him very well for life and he probably wouldn’t have friends.

But I do want some adjustments made for him like movement breaks and having a fidget toy because these really help him cope with the day with little impact on others.

I think the stats will be hard to interpret here as they won’t factor in the children who were never diagnosed because they learnt to mask and were basically ok or tell you much about whether teaching social skills causes burnout.

The issue is that the parents view education as setting the child up to fail. This is replicated up and down the country.

Movement breaks are a good example of each parent individually thinking that it's a small imposition and doesn't affect anyone. In a mainstream class of 32 and 6 are entitled to movement breaks, that's 6 kids walking around at times. Hugely disruptive. Assume the 6 are then allowed out of the classroom, multiply that by the 30 or so classes taking place at once in secondary and you have 180 kids allowed to be out of a lesson. That's a safeguarding risk.

I think this is the crux of it. For an individual student the 1:1 is needed and the movement breaks etc are reasonable. When that cost is multiplied by every child and those reasonable adjustments for multiple children in a class are consiered it becomes very hard for teachers to maintain flow and control of a lesson while meeting all the needs of various SEN kids while educating everyone to a good standard.

I may be being obtuse here, but if 1/5 of your cohort need a specific thing, would that not either be an intervention that would be TA managed or the whole class would just have a brief movement break?

It isn’t that difficult to embed that into your teaching - we used to, and the brief spell of everyone moving would be less distracting than some children wandering about and others trying to learn.

If it’s not possible to provide that intervention because of staffing levels, that’s a school operational problem and not a parent problem.

I think you have a point but I don't think reducing support is the answer.

I'd rather see more support and guidance given to children in how to cope with everyday challenges coupled with putting more support in place for adults who need it (and this is slowly changing, I think. Though there's still a long way to go).

Obviously its not a one size fits all, but I do think we sometimes underchallenge children with disabilities because it seems easier or kinder, when helping them work through challenges and learn the skills to cope better in the future would benefit them more in the long run.

Unfortunately doing this properly is likely to take more time and effort than either over-allowing exceptions, even if they don't help in the long run for that specific child, or just expecting children to 'get on with it', leading to children missing education (either through not attending or because they are too overwhelmed to concentrate).

I 100% agree with you.

There has been a massive uptick in the number of employment tribunal claims that involve neurodivgence and failure to make adjustments/discrimination in the work place.

Employers have been incredibly slow in implementing changes that would support their neurodivgent staff and return to work mandates have gone down like a lead balloon.

Agree with this. The teachers who think outside the box and bring in whole class interventions are probably the ones who have fewer disrupted lessons overall, and a happier and more productive set of pupils.

Also, not all ND children will need movement breaks at the same time, particularly if cognitive pacing is employed effectively throughout the day. Some might struggle with the cognitive load of maths and need a break then, others might find PE is too overwhelming (noise, movement etc) without a quiet time break. But it's extremely unlikely that 6 children will need movement breaks at exactly the same time.

A common misconception is that all ND children struggle with focus and attention for pretty much the whole day. Some will of course. But the reality is that many will have spiky profiles, and keen interests, and are often capable of good attention and focus based on their cognitive preferences. Rather like NT children in fact - which brings me back to whole class interventions utilising a mix of strategies that benefits all children. This then allows for a more tailored/ bespoke approach for the very few remaining children who experience significant difficulties (who should probably be in specialist provision anyway, but the LA says cannot be accommodated).

My dd's pattern recognition and interpretation of visual data is off the scale brilliant (98th percentile). Her processing and interpretation of verbally presentes information drops to 15th percentile. This is due to a mix of performance anxiety when put on the spot and being hyper sensitive to external stimuli. The problem is not her intelligence, but how she accesses the information presented to her. 65% of the population are visual learners. So why is so much classroom information still delivered verbally (though I accept there has been a considerable move recently towards visually aided learning)?

1/5 is standard nationwide. They get a movement break every hour, but parents argue they need more.

No I can't give every child a movement break in a maths classroom.