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?

Because it’s a spectrum from high functioning to severely disabled.

There are huge numbers of neurotypical kids who are school refusing since Covid - anxiety is at an all time high among teenagers who have missed out on vital developmental stages and yet the demands of school continue as if their education hasn't been disrupted.

Some autistic children are better at masking, some find the school environment less difficult than others.

I consider it a massive win if I get mine into school and I do not feel guilty if I don't succeed. Nor do I feel that someone who gets their kid in more than I do is a better parent.

Get your 12yo onto the zoom-based sessions by https://www.bemoreuncommon.com/ - 2 different 3-session courses "understanding my brain" and "exploring my strengths" are specifically designed to help y7-y9 kids with autism and experiencing school refusal anxiety etc.

Anxiety is highly comorbid with ASD, anxiety can obviously vary hugely. It's not surprising that many kids with ASD just cannot cope with secondary school, it's a completely over whelming environment with constant transitions and huge amounts of social and academic pressure.

DS has thrived academically but really struggled socially, he became very wary of even attempting to make friends. At almost 18 he is emotionally more like a 14 or 15 year old - in fact I'd say he survived by becoming emotionally closed off.

First don't feel bad, you are doing your best and listening to what your children say they need and putting their needs first. Getting through school is hard it is not a given that mainstream school is right for everyone.

I have (nearly) got 2 autistic young people through school. DS is 19 and at uni, DD is 17 and just started y13.

DD has had a really tough first day. She had a melt down on the way into school and so DH brought her home, then got her back in for 10. Then DD calls me at 2pm in tears I talk her down for 40 mins. Then DH picks her up again! But that is a pretty typical day at the beginning of term 😅 I hope tomorrow will be easier for her and us.

DS was very determined and academic so he powered through school on force of will. Got excellent results despite various barriers and sensory issues and needed very little additional support just acceptance that he is autistic will not be flexible, will need warning about changes, won't do well in group work and needs extra time and a scribe for exams.

DD has an EHCP, needs more support, medication for her ADHD, safe space in school. Help with her anxiety and she needs me and her dad to be there for her. She is constantly worried about what she ought to be doing, thinks she is being judged all the time. Gets very stressed and her meltdowns can be epic. So school has been a challenge! But she is predicted 3 As and is a clever old bean. So I am a bit terrified of her going to uni and how that will work.

My kids got/are getting through school because ultimately they want/ed to be there. Despite the struggles, and the social pressures. They were/are distressed by other kids not following rules or perceived injustice if teaching staff are unfair. But they want/ed to get the qualifications and that keeps them motivated.

Every child will have their own motivations, priorities and ways of coping/ learning some will not be compatible with school. There are other places and ways to be educated/ get qualifications, progress and develop. The UK is pretty narrow really in how education is perceived and structured.

It thinks it’s disgusting the way ASD kids with no learning disabilities are treated.

They aren’t generally severe enough for a special school but are just expected to cope in a NT environment. Except often they can’t. So they drop out.

Theee should be a specific area of education for ND high functioning.

When l was teaching, the long ye absent usually had SEND. But they are just expected to cope in mainstream. Then they can’t and they are just ignored.

My daughter 14 and step son 30 are both diagnosed with ASD. Both have similar issues but they are so different. DD loves school - she gets some support in the classroom and she has a coach outside of school, and she is managing very well. DSS dropped out of school at 12 and totally refused after that - he basically stayed at home and I doubt he'll ever leave now. Like all divergent people , they are so different.

Often it's the kids who are "better at masking" who are the ones who come unstuck and suffer burnout. Masking is exhausting and soul-destroying and the strain is cumulative; that's why the whole "high-functioning" label is so destructive. We need to adjust our attitudes and expectations to protect the long-term health of autistic kids. Just because they CAN mask convincingly doesn't mean that it's healthy for them to do so, or appropriate for adults to reward and encourage it.

Oh holy f**k it's hard to even work out where to start explaining what is wrong with this statement!

This is a good explanation though: https://neuroclastic.com/its-a-spectrum-doesnt-mean-what-you-think/?fbclid=IwAR3EAlNNFLZDs-54QcF31jiuWzHlKnnwLbj-P8PzucPCxnWGKUd3KlOfpac

Functioning labels are extremely harmful to autistic people. The spectrum is not linear and ability to function i.e. hide your autism from the world and behave like a neurotypical person varies. If you saw my DD gaming online with her best friend, you'd have a hard time even noticing that she is autistic. Which makes her 'high functioning', right? If you saw her in a heap on the floor, shaking with anxiety, completely unable to talk or move, would you still apply the same label of 'high functioning'? Same kid, different day/circumstances.

Also, don't forget that autism and learning disabilities are separate things. Having a learning disability doesn't make you more autistic. People seem to use 'high functioning' as a shorthand for 'autistic but academically capable' and 'low functioning' as 'will never live independently due to their learning disability'. That's not how it works.

This idea of ‘allowing’ staying at home is so toxic. Parents aren’t just saying oh ok then, don’t bother. My son COULDN’T go to school when he got to 7. He has asd (pda ) and severe adhd. I tried everything, and then I tried it all again and again.

•I dragged him and the furniture he was clinging to
• I wrestled him off me while he screamed and held onto me so tight he dislocated my fingers.
•I bribed (he turned down every bribe)
• I was stern and unwavering (he curled into a crying ball around the furniture and just didn’t respond)
•I reasoned with him
•I stayed 100% out of the way while my wife tried to take him in, in case the problem was me
•I walked him the long way round to try giving him extra time to process the change
•I drove him to lower the demands in the morning
•my sister and his cousins walked with us to distract him
•my sister and his cousins DIDNT walk with us in case he was overwhelmed
•I did silly dances/sung daft songs the whole way there to help him relax and to distract him

•I bought him weighted things to take to school
•school tried him arriving early
•they tried him arriving late
•they tried letting him home early
•they gave him 10 minutes 1-2-1 every morning with his favourite ta
•they let him pick his desk instead of having assigned desks
•they let him choose whether to go outside of stay in at break/lunch
•they put a desk and chair in the corridor that he could choose to go to any time he wanted space
•he didn’t have to follow the toilet rules- he could go whenever he wanted

If I did get him in he sat at his desk in terror and cried- they kept telling me they didn’t know what to do because he didn’t do any work and they couldn’t tell if he didn’t understand it or couldn’t do it or what was going on with him.

They refused to apply for an ehcp (and said they would not provide any support or evidence if we applied ourselves) even though they felt he needed a full time 1-2-1, because he doesn’t have behavioural problems so the application would be turned down.

Clearly this would all be fine if I just hadn’t ‘allowed’ him to stay at home.

You are not a terrible person and that parent is just clueless about autism. The socialization, sensory issues, executive function etc all vary. Some autistic kids might be fine at school but for others it’s torture. My dd 15 has been out of school since January. I wish I had not waited that long till she reached burnout. The many years of trauma, the bullying, anxiety, panic attacks etc was too much in the end. I didn’t know she is autistic. She will not be returning to school annd we are now looking at tution to get a few GCSE’s done. She has a classmate who I strongly suspect is autistic and has OCD. She seems to be thriving in school. All A’s. But as soon as she gets out of school, she is so angry (meltdown)and I’m guessing she is masking at school like my daughter did to an extent. Perhaps she’ll get through her studies but I wonder at what cost to her mental health.

*gogomoto · Today 17:16

Autistic spectrum disorder - clue is in the name. But also there's comorbidities often and yes households differ, parenting differs etc.

My dd went in every day, I didn't allow staying at home but often I was picking her up by 11am, but we persevered and found a way of keeping her in school (she worked in the school office instead of in the classrooms), weekly therapy sessions also helped plus if she got picked up she had to come to my work, no going home. I can't tell you that if you take my approach your children will attend school because they are all different but it worked for us, final year university now*

I tried to not ‘allow’ staying at home too. Then she seriously self harmed. Somehow having my daughter alive became more important than school. She’s now in severe burnout, and can hardly read after getting 9 GCSE’s.

Luckily your approach worked for you.

I also have 2 autistic teenagers.

One (the elder) has never had a problem with attending school.

One has managed attendance of about 30% in 2023 so far.

Just because they don't feel able to go to school doesn't mean you're doing anything wrong.

+My dd went in every day, I didn't allow staying at home but often I was picking her up by 11am, but we persevered and found a way of keeping her in school*

I guess “not allowing” would ultimately mean my child feeling they needed to mask at home and at school. And she’s now too big to physically take to school so not allowing would mean fights and arguments which isn’t going to improve anything - I don’t want her to go to school (Which was a hostile environment for her) for fear of consequences if she doesn’t.

I’ve read the replies and feel better. It’s very difficult when it’s your child, not to wonder what I’m missing.

Ok I've two ASD daughters. Older one didn't like school but did manage, she was in a very good school, bit smaller than usual, her friends moved up with her. Very good caring staff with a great understanding of ASD. A good ehcp ensured she got a lot of support. She's now at university doing very well. Younger dd has a lot more sensory issues, cannot cope with the busy environment, noise etc. she would mask very well which older dd didn't and unfortunately she's got burn out just before secondary. Needed 18 months out of school and then started in a specialist ASD school where she's now thriving.

So I suppose it just varies from child to child and what they can cope with, plus how good the school is,and definitely the support they get through their ehcp

Yeah, quickest way to ASD burnout too. Not sure how to bully a 5ft 11 girl who knows her own mind into school.

Perhaps l shoukd pick her up?

She wants to be there. She wants to learn. But she’s so traumatised by it all that she can’t even walk past it. What a great idea to force her in.🤔

Try and be kind to yourself, it’s really hard dealing with these issues.

It is very very hard. The "normal" parenting advice is often completely inappropriate. Even the advice for parenting autistic kids is often inappropriate, because autism is such a broad spectrum and one autistic kid can have entirely different strengths, differences, and needs from another.

We are all just trying to find the best way forward for our own particular kids.

100% @Greensleeves

Masking is better/more convenient for everyone else. But at what cost to the autistic person?

Younger DD has gone in today but lots of tears and upset. She is miserable. I’m unsure if it’s just the adjustment of the new term or whether this is going to progress.

DD is part of a club outside of school which she loves , but is so upset already , she hasn’t been able to go at all this week.

I am on edge as I don’t want her mental health to plummet. She has huge sensory issues and I understand that secondary schools can be awful for sensory DC.

@WhaaaatNowThen is home educating or online school a possibility for your family? I know it isn’t for a lot of people, but it’s been wonderful for my ND child.

What mitigations help her sensory issues? Eg ear plugs, tinted glasses, a soft fabric on inside collars and cuffs? Does a movement break outside help? Is there a quiet room for time out?

Also what is her sleep like? My eldest (ADHD and on ASD assessment pathway) had really poor sleep. A lovely paediatrician got her melatonin and it is definitely helping her sleep and therefore reducing overwhelm in the school week and meltdowns at home.

It’s not just that autistic people are different. It also depends heavily on their personal situation. Who else is in the class, how much they’re bullied, whether they have friends at school, etc. I had a terrible time at school as an autistic child because I was bullied and had no friends. Then I switched to a different school for a levels and coped absolutely fine because nobody there picked on me and I had a group of four friends.

School refusal is often triggered by bullying and exclusion. The victim may be autistic and that’s why they’re being bullied and excluded. But their feelings aren’t directly caused by their autism iyswim. It’s caused by the people around them and how they treat them.

My tounge in cheek answer is it depends on whether they are pre autism burnout and are just storing up for a breakdown or post autism burnout and have already broken down....

But more seriously its a spectrum disorder and school will naturally suit some people and some schools will have got any adjustments needed just right.