Why do some DC with autism manage in a mainstream school and others struggle to attend?

[WhaaaatNowThen]

I have three teens aged 15, 13 and 12. The 15 and 12 year old both have ASC diagnoses. The 15 year old spent most of last year out of school and has not returned for the new term yet.

The 12 year old has been back 2 days and is now refusing to go school tomorrow. She has cried both nights and is utterly miserable. They are at different schools.

DD2 has a best friend who also has ASC but is managing very well.

I feel like a terrible parent. I don’t understand how others can manage and others can’t . Am I doing something wrong?

I completely disagree, functioning labels as a family we find functioning labels really useful and I'm very glad ds was diagnosed with Aspergers syndrome and not just shoved under the 'umbrella' of ASD.

Your daughter may at times be a heap on the floor suffering with anxiety and that's terrible - but anxiety is a comorbidity, it is not part of ASD anymore than you say having a learning disability is. Although the old diagnosis of classic autism actually did mean you had a learning disability (IQ below 70) and a recent uk report found that as many as 55% of children with ASD had a learning disability. In contrast 40-50% are thought to have anxiety.

I'm guessing though that your dd is able to toilet herself, I doubt she's ever smeared her shit up the walls, probably never suffered from pica and been eating rubber, coal, plastic and anything else she can get her hands on, never taken all her clothes off in public at an age that it's complete inappropriate. It's you (and others) who misunderstand high functioning IME, it doesn't mean you can cope with anything but it does give a very simple level of differentiation.

My 21yo was also diagnosed with Asperger's at 6, is what you would call "high-functioning" (he's just entering his third year at Oxford). He had pica as a child, he used to eat sand, handfuls of mud, you name it. He also had a full physical and mental breakdown at 16 and was hospitalised with suicidal ideation and the kind of self-harm that gives parents nightmares.

Functioning labels are harmful. They place ridiculous and unrealistic expectations on academically able autistic people to be less autistic than they are, which contributes massively to the likelihood of burnout and mental and physical health problems. "Low-functioning" is an equally destructive label; many non-verbal autistic people find themselves treated as inanimate objects with no agency because no effort is made to engage with them or find ways of enabling communication. There are "low-functioning" autistic people all over the world who are considerably more intelligent than you are.

The only people who are still clinging to functioning labels are people like you, who have an extremely outdated and limited view of what autism is, and can't be bothered to educate themselves further.

On top of the things already mentioned I think home environment makes a huge difference, and the EP that did DDs diagnosis feedback said our home environment is probably the reason she had been able to cope as well as she had so far.

I'm a single parent and DD is an only child, our house is incredibly quiet, there are no arguments, there's no one to annoy her, there's one set of clear rules to follow instead of having two parents. Our life and everything we do is centered around her (too much perhaps). She doesn't fancy doing X, Y or Z, we dont do it (unless we have to) until she's ready, or we'll do it later in the evening when she's more up for things. When she gets home from school she gets the downtime she needs with no interruptions, she refills her energy bank ready for school the next day. You can't do that with a partner and multiple children, there are squabbles, meeting everyone's dietary, academic and nutritional needs and taking/ waiting at activities etc but then those children may learn conflict resolution and other skills that my DD won't so there are pros and cons.

Because every autistic person is different and not every school is the same.

@Greensleeves @itsmyp4rty
In some ways functional labels are pointless/minimising/limiting- however they seem to only really be used as occasionally as a short hand for ‘can manage for an hour at cubs without a 1-2-1’ and things like that. I don’t come across them in other situations?

But then I home educate so maybe they are used more in educational settings?

Can I just say (as an autistic adult, with one diagnosed and one awaiting diagnosis child-ren) that it's INCREDIBLY FUCKING FRUSTRATING to have what could be a beneficial thread totally fucking derailed by one or two people wanting to take it over with the same bloody language policing that they try to do on every single fucking thread about autism so nothing that might improve the lives of people actually gets to be discussed.

Rant over.

Some schools are better than others, some school staff are more eager to engage than others (I've just literally got off a call with DD2's teacher who wants to make sure that we handle DD2's friend not returning to school in the best way we can for her), some teachers are arseholes who just have decided that they're going to disbelieve and ignore diagnoses (we've had to move school because of this and a year from hell which almost destroyed DD2 - if we'd stayed put I've no doubt we would have been tipping over into massive anxiety and school refusing behaviour by now)... and some kids can manage to compartmentalise their lives to cope with things, or are less sensitive to different triggers than others... or, as I did back in the 80s, just mask and mask and mask until they stop getting abused and can float unhappily just below the radar.

But there's "kinda-coping" in school and there's "thriving" in school (and there's "just about muddling through, good and bad day style" as well which is more the middle point that I think we tend to get to). I got through school "fine" - academic results - but I got through, as an undiagnosed girl, basically by my life being made hell until I learnt to appear less "odd" and "fit in"... and I do have a lot of fairly suppressed trauma as a result (particularly from primary school) which still pops up in waves at the strangest of times - there was the year I was made to sit on my own behind a filing cabinet as I was struggling with social interaction (and this was not in some kind of kind "personal workstation" way - I hated that filing cabinet with a passion and wanted to be with the class), there was the time for a good term where I wasn't allowed any playtimes because I kept getting into small arguments (I was never ever physically or verbally violent - these were playground "he said... she said" squabbles) and I had to spend every break time dusting every single reading book in the infant department. Then I fell in love with music and learning the guitar and the Head decided I needed punishing for being odd and not fitting in enough - so she took the one thing I really loved in school and removed me from the guitar lessons... so yes, I learnt to keep my head down, and I kind of did the school work as a displacement activity to stop me thinking I think - but I certainly did not thrive, and when I look at it now, as an adult, this stuff still upsets me to the point it makes me cry periodically (watching DD1 start learning the guitar has been quite a trigger point recently for example).

I aspire for more than this from school for my kids. My mum didn't have the time or mental energy to fully understand what was going on in school - and I was made aware from very early on that she wouldn't intervene or undermine them... and nowadays she's horrified at what I put up with.

We moved the kids from what was absolutely a "wrong" school for DD2 (as have most parents with SEN) - we moved her in year 3 (junior school and frustratingly the linked infants is amazing), when it became clear they'd disregard and belittle diagnoses... I've no doubt that if we'd kept her there, she would be refusing or screaming resistance to attend by now in year 6 - the number of kids with SEN who I've seen being physically bundled over the school gate threshold in that school is shocking. However, I'm lucky in that I have an employer who allows me the time to make sure that I can work with school to get things in place for the kids, who allows me time to attend meetings and appointments and who also will offer me advice on how to get through systems to access support - and I've been able to take the time to arrange things like moving school when that was required... my mum, as a single parent who needed me at school so she could work in a job without that flexibility, did not have that luxury.

Because quite simply everyone is different, everyone is their own person. Different personalities, different likes / dislikes, different environments, different upbringings etc.
That has nothing to do with autism.

The crazy part is that everyone is expected to go to school and wear the same clothes, perform the same and cope with whatever requirements the school / government have decided are "essential".

I am really sorry that happened to you @CoffeeWithCheese 😞.

every child is different, every school is different, every parent is different.

ds, who has an asc diagnosis (would've been Aspergers if they still separated the two), has coped fine at school - made some good friends and is doing academically well. Probably because we've given him zero choice in the matter and the option for refusing just isn't there. we have to go to work so he has to go to school. end of discussion. And because that is his routine, and he thrives with routine, he is doing well.
I think SAHP or WFH parents may possibly be a bit softer and more in tune with their dc's feelings, and knowing that they have a safety net of not having to go in, means they are more free to express their anxiety and drop the mask, so to speak. but that can lead them to becoming a school refuser, causing additional stress in the home, and limiting their future opportunities both academically (lacking qualifications) and emotionally (lacking resilience)

Which is more damaging in the long run - lack of resilience and education, or emotional suppression? who knows, but there is no blanket answer.

Each situation is different - the child’s needs, the school, the support the child receives, the home environment, how they get to school… which all influences how a DC manages (or not) at school.

Some DC are also seen as fine/OK when they are anything but.

Some that cope well when younger don’t when they get older.

My son is very good at school but it wears him out. I am fully expecting him to be a school refuser in years to come. I was in there this morning and the noise is horrendous., I’m not sure how he copes. (Asd)

This is so wrong.

My Dd was given no choice of staying at home. So she self harmed. Fortunately your child got through.

It’s not about parental attitude. You were lucky. My dd had ASD burnout. She was too unwell to go. Congratulations on your superior parenting.

DC don’t need to attend school to get qualifications and no-one learns resilience by being forced to endure an inappropriate setting.

When Ds was in reception his teacher said to me “when you have met one person with autism you have met one person with autism” and that’s why what works for one won’t work for all. Often issues arise when good meaning people assume because someone is autistic they need x,y and z when really then need a, b and c.

we hit crisis point in year 3, the echp we had wasn’t worth the paper it was written on. I was lucky his school were amazing and helped me fight and provided full 1-1 while we fought to get it named in his ehcp.

in his case Ds sees it as school is for learning. He has no interest in his peers (we are working with him on this) and is pretty academically able. For this reason the only options for secondary school were mainstream locally but we were lucky that our local one is small and nurturing enough to meet his needs. He is in year 9 now still have full 1-1 but is able to do about a 75% timetable and we are hopeful he will be able to sit some GCSEs but we will see what happens.

but the school system on the whole is set up to fail those who don’t fit into the box. To get proper support is a battle and is reliant on the settings being decent enough and suitable for the individual. Too many who can’t cope are left with nothing other than a ruined relationship with education and demolished self esteem. We need a system which has more options for those who the normal routes aren’t right.

Forcing children into an unsuitable situation for them in my opinion is a lot more damaging. It also gives the idea that parents won’t listen so home also stops being a safe place where concerns are listened to and responded to in a caring way.

Your DS sounds like my DS3. Earlier this year an EP asked him to draw &/or describe his perfect school. Part of what he wrote was a school without any other pupils!

Yes that would be his dream. He had two other children in his class that he will work alongside at a push!

School support and structure is vital - I have 2 autistic kids and both are in mainstream (not in the UK). I have seen kids be absolutely failed by schools and to be quite honest England has a real issue with talking about mainstreaming but not actually facilitating inclusive practices, plus schools then bailing on the children, saying they "can't cope" and dumping it back on parents. I watched this happen to one of my nephews.

OP News - School avoidance: 'I was crying, screaming and shouting in the car' www.bbc.co.uk/news/uk-northern-ireland-66721458 this was in the BBC News app today. It's not about autism specifically but anxiety and school refusal generally and it made me think of you

And @CoffeeWithCheese I hear your frustration. Boy do I hear it. So many threads derailed by people so blinded by their own self-obsession that the OP barely exists for them.

No, you're not doing anything wrong. I have 3 with autism aged 17, 15 and 9. The older 2 love the routine of school/college. Also eldest is doing a course in his special interest so he was very excited to go back. 9 year old hates the transition from home to school so has a massive whinge about going until he gets in the car and then he is fine.