Children with ASD / ADHD going to mainstream school.

[BabbaJoe]

What has been your experience of your ‘High-Functioning’ ASD / ADHD child going to mainstream secondary school? My DS is in Year 5 and very academically able. He is happy at his mainstream primary, but frankly he is hopeless socially. They struggle with social cues, have no friends, and act very silly and immature. Whilst he is accepted by his peers, he has no friends, and has been called weird / freak in the past 😔

We have been told that he will not qualify for an EHCP as he is very intelligent and ahead academically, and there are no real reasons to warrant it as he is quite happy at school.

My real concern is secondary school, as that’s when I hear time and time again that ASD / ADHD kids fall apart.

I have three options:

• Mainstream Secondary
• Private School
• Private School that specialises in students with high-functioning ASD.

We can afford the private options, but it will mean cutting back and financial sacrifices.

Those who have been in my position, what would you do, and how did your children cope in mainstream?

And yes we could possibly have had other options if we applied for an ECHP but the thought of it truly exhausted me. We needed other options quick, my husband and I felt totally drained of emotional energy.

I'm diagnosed with ADHD and I fell apart academically at secondary. I exceeded in primary school then ended up with all C's GCSE and A-levels (I've since gone on to be a solicitor so pulled it back somewhat).

Socially I have always excelled. I think there will be a big difference between ASD and ADHD experiences in secondary both socially/ academically.

The best school will be whichever one is willing to work with you to help tailor his experience to give him the support he needs in the areas he needs it. Most schools tend to have a one-size-fits-all approach and struggle to make adjustments. Even ones who claim to be SEN-friendly are limited on what they will do.

I agree it’s a good idea to attempt secondary but please don’t do what I did. I persevered for far too long when he was school refusing. I should’ve listened to what he was telling me and looked at alternative settings a lot sooner. I left it until year 10, then it took forever to find something else and he never really settled. He left school without sitting a single GCSE and I blame myself for that 😪

It wasn't great for us, DC now attends online school.

We found the school could not support their mental health without sacrificing academic support.

Since moving them both improved enormously.

My only advice is that whatever you choose have a Plan A, B and C ready, but hopefully you won't need them.

I too pushed school for far too long which ended in catastrophic results.

My kids did leave with GCSEs thanks to lockdown however level 3 education and Alevels have been royally screwed.

There is a glimmer of hope though for all going through this. I have learnt mental health trumps all and life isn’t linear. My son has now got himself well and is planning on doing retakes of his Alevels online and then uni. He has it all planned out and worked it out for himself. My daughter is nowhere near that stage yet so we are focusing on getting her well. The son who coped ok with ND and school is at uni. He got good grades, not quite what he was capable of but the fact he didn’t fall into crisis and got into uni and the quite intensive course he wanted is more than amazing. He may not be in the Russell group uni he was capable of but I’m pretty sure it wouldn’t have been the right place for him. It’s working out what is best for them and not the straight line everybody else follows or tries to follow.

It’s a journey and managing the mental health is the priority. The fact they are finding out about themselves now is actually a positive for me. Ok they have needed a lot of services and support but I think it will put them in good stead for managing their autism throughout life.

I realised too late that MH is most important. My DS struggled massively with his and again I blame myself.

This must have been an awful experience for them, but every school I know personally (quite a few) are adding provisions for mental health, autism hubs etc. The need has become so overwhelming since COVID, and schools that previously said they didn't have the resources or space have had to find them in response to the huge numbers of children now struggling to attend. It's still not enough, but I think provision is going up not down.

A school with specialist support is also more likely to have expertise that filters into the rest of the school. You see it with any specialism - if there's a provision for blind students, the teachers get to know more about how to teach blind students effectively.

You will always hear parents on mumsnet talking about how the rules allow for EHCPs for various reasons and stories of how people got support from enlightened LAs for cases like your son's.

In the real world, and I work extensively with parents with kids with SEN, most LAs are strapped for cash, and turn down all but the most severe requests. By all means try, but I do worry you could find yourself down a very draining and exhausting process of appeals and form-filling. It took us 2 years of appeals and the best part of £20k on lawyers and specialists to get all sorted for my son and he was absolutely at crisis point.

Going back to the options you set out, state secondary, private, or private SEN, I would say:

• Private SEN - will no doubt be wildly expensive. I really doubt you would get the LA to pay fees. In my network only those with children with very profound needs where they physically can't go anywhere else have had their fees paid by the LA, and even then only after going to court. Every child in my son's class has parents who have gone to court for their funding. All of us. (yes, yes mumsnetters, I know there will be at least one of you who had an expensive school funded by the LA because you were worried about your kid not coping socially, I am sure there will be at least one out there, but this just isn't the case for most). IF you can genuinely afford it over the long term, could be a good option but please check what actual exam results they are getting at GCSE. In my experience even the SEN schools which follow national curriculum do tend to have lower academic standards, which is a huge pity.
• State secondary - just seems a risk. Might be fine. Likely wouldn't based on others' expeiences.
• Private mainstream - I think on balance this is your best bet as private schools tend to be more open to working with parents and tailoring the provision for the child. You could in theory ask for them to help scaffold friendships and all sorts. Before my son was in SEN school he was in a private and they put loads in place for him both academically and socially to help him. It wasn't enough, hence he needed to move, but if he'd have been more stable like your son is I think it would have been all we needed.

@ZippyGoose That is what I always hear in real life from educators, SENCO, other parents. Even family members who have worked in SEN for years, who know my DS very well, have said getting him any sort of EHCP or provision will be very difficult. One family member said that most people with children like mine, only get specialist support when they have instructed solicitors or taken the LA to court. It’s only online (mumsnet, forums) that I read differently. I’m not saying that those on Mumsnet aren’t telling the truth, I am just confused as the advice and opinions are very different to what I am being told in ‘real life’.

The specialist ASD school achieves above the national average for English and Maths, which is very encouraging. It sounds perfect for my son. He does get DLA for the input he needs at home socially and emotionally, and whilst not much, it would help to fund some of the fees. I need to look at mainstream private too.

It’s promising that some on here have said their children have thrived at mainstream secondary. Others have cited terrible experiences, I’m so sorry for those of you whose children have ended up with mental health crisis. This is really what I want to avoid by, perhaps preemptively, bypassing mainstream altogether to protect his self esteem and mental health.

Regarding the EHCP, my DC is not in crisis (although we all were before she was diagnosed). I have a friend whose DC was diagnosed with ASD after going through puberty, suffering an eating disorder and becoming selectively mute. My friend advised: "do not wait until there is another crisis to seek EHCP! You do not want to do that paperwork when you are in crisis."

I thought that was wise advice, so I followed it.

There is a very mixed picture nationally I think. It's hard everywhere but LAs and local situations do vary.

Sadly for those who'd like to flout it, the law is the law, however.

We have spent some money on assessments, reports and therapy, yes, but the actual tribunal process has been free (if you discount the hundreds of hours on paperwork, obviously). Spemding has mostly been because absolutely nothing was available in the public sector in 2020-1 so our timing was awful. And ignoring the EHCP we would have had to pay for most of the stuff or go without anyway (the one exception being a private OT report because I panicked and organised it myself as the LA were being so slow).

You sound like a great mum. Your son is lucky to have you x

DD is 16 and only received her diagnosis last year. She is in Y12 now.

Primary was from Y5 onwards a disaster, it didn't help that there were the Queen B clique of fashionable girls with smartphones etc and even without ASD, DD wouldn't have clicked with them.

But she basically lost all friends.

Secondary was a totally different thing, more children meant more girls in more varities of interest and personalities. She clicked with several and had a really good time.

But, yes, she also struggles with social cues, she currently has a huge issue with some teens as they don't understand that DD doesn't understand non-verbal cues and takes everything she hears for face value and can't see how things she says will hurt others/comes over as rude.

We are actually just managed to get her back into therapy for help.

We know she is masking to a degree and see the consequences at home.

I think each child has to be seen separately, some schools are better, some not. Friends with an ADHD son managed to find a secondary which is not sporty but has a good reputation for "nerdy" children so her son fits in with his ways.

@ZippyGoose Thank you. I try my best.

@reluctantbrit Your DD sounds similar to my son. Although he is generally accepted, he has never had friends. His social skills seem to be getting worse (or just less acceptable) as he gets older. He really tries to interact with people, but with ASD and ADHD thrown into the mix, it really is a disaster. Not only does he not get social cues, he also has no clue about personal space, boundaries, he’s very hyperactive so talks at a million miles an hour and bounces around!

However, academically he is a success and he is happy. He loves reading, drawing, writing, comic books, coding, computing, gaming, so I think a group of ‘nerdy’ children would suit him well.

My Dd went mainstream. Crashed out in y12 with severe autistic burnout. Still in it 12 months later. Often if they are ‘coping’ it’s masking.

If l had my time again, I’d get an EHCP sorted asap. Instead of waiting until disaster hit.

My DS is in Year 8 at MS secondary school. Has had an EHCP from the start of primary. Has autism & ADHD, epilepsy developed last year too. Academically he is just below average, but not really struggling in terms of ability.

He is getting on really well at senior school. It is a large school, 240 intake I believe. It's an international school (officially, does International Baccalaureate etc) so 'different' is normal there, so many DC from different countries speaking different languages, I believe has led to an overall culture of acceptance.

Academically, he can understand most of the work & thrives in languages & drama. Always tries his very hardest in every subject & school recognise & reward this - achievement points every day, big prize last year. Has own TA most lessons. Struggles to get things down on paper in time, despite all allowances given (exams - extra time, movement breaks, own room, scribe). Thinking ahead to GCSes we are going to ask if he can do fewer (6/7 rather than 10/11) & perhaps focus on life skills. But need to see if school can agree to this.

Socially he is fine. Has a couple of friends & has even been invited to one party. Seems to be liked & doesn't get picked on. Nothing more than that, but he's happy with it.

So an overwhelmingly positive experience for us.

I'd be careful extrapolating your own experiences.

Sure, some autistic kids are masking.

Many, like my brother and I, genuinely do cope ok. Not saying school was the best time of my life but we managed. If the OP says her kid's happy enough, she's probably the best judge of that x

@ZippyGoose @ArseInTheCoOpWindow

My son definitely does not mask, he’s very happy with himself, and has no inclination to. I’m not even sure he would be able to mask to be honest, his ADHD is very evident.

He’s very intelligent so he excels academically. He does get hurt when people call him names and this affects his sense of self and self esteem. This is my main concern about secondary school, as teenagers can be terrible, and unfortunately he is the absolute archetypal child for bullying! I do not want him to end up hating himself because of nastiness from others.

Seeing your latest update I would look at private schools at the smaller end with really good pastoral and SEN departments.

My DD14 ADHD and ASD has thrived and I would say about 40% of the girls in her year are also ND.

The other thing I found about private school is the extra curriculum stuff is fabulous, along with field trips etc

But really you just have to look at all options like I did, you make the decision that is right for your child and their personality/needs. I walked into the one I chose after quite a few open days, she loved it and so did I, it had all the right support and ethos.

She struggled to make friends at first too BTW but since year 9 she found a nice group all who are all ND too.

Feels like you are doing all the right research OP

One thing though, I would be very careful about assuming state=bullying, private=no bullying.
Of 5 schools in my area that I know people with kids in the two with the worst bullying are private- as is the one with the least. The two state comprehensives in my town are quite middle of the road but my son once said to me, ‘I wonder why I have never been bullied given that I’m short and ginger and weird.’ 🧐
A friend elsewhere with a quirky kid at private school who was being picked on mildly once said to me, ‘Thank goodness he’s not at state school, he’d be eaten alive there!’ which I thought was a hell of an assumption to make given the actual experiences of our two kids!
Worth asking around as widely as you can on this one as it doesn’t seem predictable either way.

@BabbaJoe Do you have any grammars near you? I know I've said it already on this thread but I do think that would be your best option. I want to avoid the state Vs private argument as I genuinely feel it's school Vs school. In my experience private special has low low academic expectations regardless of what they say, a lot of understaffed and undertrained teachers and iffy policies. Private mainstream esp small cab be miserable if you're getting low level bullying as every parent is a customer and it's difficult to nip it in the bud unless it's serious bullying. State has its pros and cons but generally it's been our best experience, but we do have an EHCP which makes a difference. For context, my DD is in Y10 and moved to a special private school last year after being in mainstream state, she's now back in mainstream state.
Look carefully, ask lots of questions and get things in writing, esp if you're going private. The more you say about your son though, the more he sounds like a grammar school fit. They're filled with lots of quirky kids and although mostly middle class, a lot less entitlement than private schools. Some private schools are of course lovely and don't have the low level bullying, I'm generalising.

Head teacher all over bullying = bullying dealt with.

Private or state.

@Foxesandsquirrels No grammars. It is just state or private. The private schools do have an 11+, but most aren’t exceptionally academic. There are quite a few private schools to consider. The local state school has has 1900 total pupils (Year 7 - Year 13), so it is a massive school.

@Phineyj I do understand what you are saying, but logically it must be harder to police bullying at a school that has almost 2000 pupils, compared with a few hundred.

I really wouldn't discount the large school. They normally have a lot more non teaching staff and are very well organised. The best pastoral care we've experienced has been at the largest school DD attended. The worst was at the tiny private specialist as the teachers were so overrun and each had multiple roles. It was impossible to avoid anyone you didn't get on with too. I understand on paper large looks bad, but it's not at all in our experience. Far more flexibility in terms of dropping subjects/moving classes etc.

Not necessarily on the amount of pupils, it depends on the atmosphere and approach in the school. Ds goes to a town centre comprehensive (small ish with only 200 a year) but from what I can see there is consistency across the board and any incidents we have had have been nipped in the bud quickly.