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?

Well if you have all the below to a high threshold seek diagnosis if you so wish.

• persistent deficits in initiating and sustaining social communication and reciprocal social interactions that are outside the range of typical functioning given the person’s age and level of intellectual development
• persistent restricted, repetitive and inflexible patterns of behaviour, interests, or activities that are clearly atypical or excessive for the person’s age and sociocultural context
• the onset of the disorder occurs during the developmental period, typically in early childhood
• characteristics result in significant impairment in personal, family, social, educational, occupational or other important areas.

I’ve said this all along. We have a rise in autistic young adults who can’t cope with life (and just young people in general) because they have been so used to so much extra support in school. Support is great, but it still needs to be preparing kids for the inevitable drop of support when they are suddenly out there on their own.

I am autistic, in my 40s, and there was really no support for autism when I was at school. I just had to muddle through and figure it out myself, like most others.
But the real world wasn’t a shock because I’d got so used to just having to deal with things on my own.

When I was teaching, I often said that schools were doing their SEN all wrong and parents were expecting too much shielding of SEN kids. It’s all well and good supporting a child but you need to make sure the building blocks are in place for that child when the doors open and they leave school.
A lot of schools don’t consider that. The child is no longer their problem once they leave.

I want to comment about the 20% positive interactions as my child has similar. It means for her to engage with the activity, rather than do her own thing in her own world, not that she is rude 80%.
all of my DD targets are 20%.

But many autistic children don’t get extra support. Diagnosis does not get you support, need does. Resources are tight and the bar is high so only the very needy across SEND are getting anything .

That's not what it means for this child in the context of the rest of the EHCP.

Your DDs target sounds reasonable in her context.

One of mine is a JAM (just about managing). He is a smart boy but needs support, however he isn't a priority because he doesn't have behavioural issues in class and is seen is able. Yet OT assessments say otherwise....

I think you are misunderstanding, the point isn't less support, it's different support?
Eg supporting a child to learn how to bring themselves back from the brink of a meltdown without needing an adult to do so, teaching them to recognise the signs in themselves that they are struggling and needing time out and finding ways for them to do that which don't involve going to a named adults office?

That is happening already however autistic children often find recognising, identifying, understanding and managing emotions very hard so it takes a long time and needs expertise which is often lacking to help.

This is exactly what they do at my son's wonderful special school. No one has a one to one support TA. They have lessons on understanding what their body is telling them, movement breaks, a sensory room with things like a yoga balls and weighted blanket and trips out to navigate the real world. Frankly if they had all this in mainstream, he would have coped a lot better, but they don't. I can think of plenty of neurotypical children that would benefit from these sorts of lessons too.

Schools, particularly SENd schools; do teach emotional regulation.

Our son has learned to identify his emotions, he’s learned what he needs when he’s heading into crisis and what he needs to get out of one, and he’s getting better at asking for it preventatively rather than when it’s too late.

But it’s a very long work in progress, and in the interim you still need to manage their meltdowns for their safety, and everyone else’s.

That's a spot on description of my ex

Yes, I dont think people understand what teaching this looks like. We have successfully done this but it took around 5 years from age 8 and needed a lot of specialist input from OT and SaLT and a psychiatrist. (I have other children where parental skills was enough to teach this in normal development timeframes)

Improvements were small and incremental. Possibly if we'd had access to these therapies aged 3 it would have been shorter and quicker but then maybe he had to be a certain level of development to take advantage of them. It was far beyond our knowledge and skill.

We've now ended up with a child who has better emotional regulation than average. I regularly see adults at work (who say the are NT) with much worse regulation.

It makes me sad that not all children struggling with this skill get appropriate support. Either getting nothing, or getting support that entrenches maladaptive responses as its done by unqualified people just trying thier best but without the knowledge and skills and perhaps unrealistic timeframes. Its pretty common to think a half term in lego club is going to teach emotional regulation. That may help with a very minor issue for children with more or less normal development.

@Tarkadaaaahling as others have said, this happens already. For those with EHCPs, it would be an incredibly poor EHCP that didn’t cover this. Even without, it is often provided to one extent or another.

EHCPs contain Outcomes, not targets.

I'm not sure you are right reg. early intervention in other countries.
I was born and lived in a post-communist country for 25 years of my life. People who today would be diagnosed with ADHD or mild ASD who could not cope with education in spite of parental pressure on marks and performing well (which was huge as parents bought the school books and always closely monitored kids doing regular homework at home), finished the primary at 14 and entered a 2-3 year Vocational school where they learnt gardening, car repair, agriculture, hair dresser's etc. Many people had family farms, so they lived off that. Or they simply did odd physical jobs here and there to survive as there was no benefit lifeline - there was simply no option of 'not being able to cope' - you just had to get up every morning and go out to earn the money e.g. in construction, cleaning, etc cause nobody would give you the money to survive. Many people did such odd physical jobs here and there, sold mushrooms/berries/apples by the road and lived with their relatives until they died. Alcohol addiction was normalized and part of life and main entertainment. Many died early in their late 50s/early 60s or went on disability benefits. So basically, if you didn't want to end up like them, you had to pull through the education till A-levels, there was little choice otherwise. And there was no option of misbehaving at school, parents would be furious and get you properly sorted if they were informed.

I didn't get diagnosed until 37, I never had support at school,always seemed to just about fly under the radar until kids and COVID, AuDHD with a sprinkling of cptsd. Diagnosis was supported and paid for privately by my job and yet now in the same job, absolutely zero support...

Society doesn't really seem to have cottoned on to the fact that autistic children become autistic adults, as if we hit puberty and suddenly are cured or something

It’s a really good point.
I think children still need to learn how to behave even if they are autistic. They need to develop strategies for eg leaving the house on time or keeping their items in a certain place so they don’t get lost.
They need to eg learn to identify whe they are in danger of becoming overwhelmed so they can slow down or withdraw.
It’s not easy though.
You are right - most jobs pay you to do the necessary work. Employers are required to make reasonable adjustments but there is only so much they can do.

I think children still need to learn how to behave even if they are autistic. They need to develop strategies for eg leaving the house on time or keeping their items in a certain place so they don’t get lost.
They need to eg learn to identify whe they are in danger of becoming overwhelmed

That’s only possible for some. Autism is a very broad spectrum.

Fully agree here and realise I didn’t actually say that.

@Carrotleek
You are right, there are a percentage of people with Autism for whom this is impossible.

However, I think that the question about “modifying behaviour”- ie learning, is a wider philosophical one, which isn’t limited to the ND community. In actual fact leading the way is the mainstream Western parenting.
Western parenting is questioning whether it is ever right to attempt to enforce social norms on children.
It’s increasingly becoming seen closer and closer to “abusive” behaviour.
In theory most parents will agree that society needs norms that the majority abide by, but then on an individual level, especially those with young babies and children, they don’t actually want to do what is required, or let educators do what is required for this to happen. School systems are struggling to cope with the clash of idealism of the parents and realism of raising the next generation.

There will be reasons for why this is happening, and I don’t know what they are, besides perhaps an increased despair at the world in general🤷‍♀️.

Anyway, when it comes to the Autism spectrum, the same attitude is seen. If bog standard parents to NT children feel that enforcing behaviour is negative , then many parents of ND children have an even tougher time in knowing how to parent.
On the one hand they see reality and their own future as it could very well be, what it actually means to have a child who cannot attend school or function when outside in society, and on the other hand they are being influenced to believe that we should change society, rather than change the individual.

The ND community, especially the parents raising children who will be expected to become relatively independent, are finding themselves caught between what they are being told, so don’t ask your child to fit into the NT world, don’t let them feel they need to modify their behaviour in anyway otherwise they will start masking and have bad mental health as adults, push push and push the rest of society to adapt, and the real world which actually is not capable of adapting at the pace needed to encompass the individual needs of an ever larger group of society. It’s knowingly pressing parents to sacrifice their children in the hope that society will change, but most likely too late for them.