Did an autism diagnosis help your child without extra support at school?

[CakeyBakes]

School have suggested referring DD9 for an autism assessment. She has siblings who have been diagnosed, but I’m not particularly keen on pursuing a diagnosis for her
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She doesn’t need any additional support at school, is doing well academically and I can’t see her needing an EHCP. Other than some struggles with friendships/social situations, she doesn’t seem to have many other traits that concern me.
From my experience with her siblings, I’m also not convinced that having a diagnosis actually changes anything if a child doesn’t need additional support.
For those whose children were diagnosed with autism but didn’t need any extra help at school, what difference did the diagnosis actually make? I also don’t know if it’s always best I know people will say so they “know” they are but I’m not sure that’s a reason oh it’s own? despite being positive with my son about his diagnosis he has really struggled with it and has been bullied for being autistic so I’m worried DD will end up feeling the same way.

It sounds like you have had a bad experience at school. My experience is with a report and/or EHCP in place, schools are better and often good at supporting.

My son doesn't have an EHCP. He's accessed the following due to being diagnosed age 9:

School holidays clubs and activities with other autistic children (free)
Extended transition to secondary school
Access to the SEN base at secondary school, allowing him to feel safe at break and lunch
Adjusted expectations from staff
Many many reasonable adjustments
Exam access arrangements he wouldn't have got if he wasn't diagnosed
Access to a university outreach scheme which then led to him being able to get a contextual university offer
Access to courses for teens with autism to understand himself better
Disabled students allowance
Mentoring at uni once a week
Specific additional requirements met with his accomodation meaning he can live away from home
Reasonable adjustments in his driving test that allowed him to pass first time

...I could go on!

No, I’ve never come across that so I wouldn’t say it’s common.

Done all that unfortunately doesnt go anywhere school say they are so LA believe them. Son tells me himself none of it is happening

Not my child but a friends child did get extra support with school

Have you had meetings with the school? A friend of mine asked for weekly meetings until she was happy that what they said they would do and what they actually did matched. Annoy them enough and they do it in my experience. You do have to put the work in if you’re not getting what the ehcp says, it should be easier but it’s not unfortunately.

Failing that, I would seriously consider moving schools. I’ve worked with a lot of young people at different schools and what you are describing isn’t common or acceptable with a diagnosis and ehcp in place.

For me it saved me having to explain his behaviour to people constantly. 'oh, he's just quirky'. Or 'he gets a bit anxious' or 'he doesn't eat at school or go on trips'

For him, he said 'oh NOW I know why I always felt different'. It changed his life.

And then as it turned out he needed a ton of support at secondary.

countless meetings that ive now lost count how many times I’ve been there, and formal complaint to the LA. They sided with the school even though they admitted they have taken away provision from his ehcp. He does not want to change schools so not an option unfortunately!

Anything anyone comes up with, it’s just no. You don’t want a solution and aren’t willing to keep trying things.

Are you ND?

No im not. I am not being rude I am trying to weigh up both options. You asked if I had meetings and ive told you ive had countless and DS refuses to change school

Do a SAR, ask for costed provision map, intervention logs and records of support etc. It’s a long process, but an EHCP is legally enforceable support so there are ways to enforce it. But as you have found even with a diagnosis and EHCP in place it’s difficult to actually get any support, but it’s basically impossible without. She never has to disclose it to anyone and it means it’s there if she later needs support.

Well, if this is real, you keep fighting at the same school, documenting the support he isn’t getting that he should be every day, having meetings, taking it further etc or you move schools or you give up and accept your child doesn’t get support and you accept that for your younger child too.

Honestly though, having dealt with a number of young people and different schools, it’s difficult to believe.

Maybe you are in an area with good schools, but not delivering section F provision is not unbelievable at all from what I’ve seen/heard.

Why are you so sure that she will not need support at secondary school? I have lost count of the number of girls that I have taught in secondary who have had mental breakdowns and become non-attenders who have subsequently been diagnosed with autism. They were 'fine until they weren't.

You say that support should come with need, but a flag on the database is going to make teachers more understanding of a child who they don't know (which is very common at secondary). It's not active support in terms of intervention, but certainly a greater awareness when dealing with that child.

If your DD doesn't want to tell people, they don't need to know. Having a diagnosis is a different level to having an EHCP.

Yes, definitely. I have one DD who didn't need an EHCP but was really pleased to be diagnosed because it made sense of a lot of things and helped her to understand herself better. It also makes it easier if you're asking for accommodations, we had quite a few things in place by the end of school. She is likely to get extra support for uni through the disabled students allowance. My other DD was diagnosed several years before we felt she would benefit from an EHCP but if we hadn't had the diagnosis at that point it may well have been rejected.

My DD wasn't diagnosed until she was 16. She was one of those girls who had no issues at primary school, except struggling with friendships. By the time she came to fo her GCSE exams she was refusing school and self harming. I would do the assessment.

Personally, I would pursue an assessment. DD doesn’t have to tell others she doesn’t want to.

If you think your DSs’ EHCPs aren’t worth the paper they are written on, they are, frankly, rubbish. You don’t have to accept that. If provision detailed, specified and quantified in section F your DS’s EHCPs isn’t being provided, it can be enforced, including via JR if necessary. Have you sent a pre-action letter? It is the LA with the responsibility for ensuring it is provided. Enforcement is only possible if F is detailed, specified and quantified. If it isn’t, you can improve the wording via the AR process then appealing if necessary.

It does sound like a school issue. I know it feels like nothing is being done, and maybe it isn't, but I know dd feels better for having the diagnosis.

I do know it is different at the local boy's school where they have a special department for SEN where they can go to cool off (it's a grammar). My friend's son is ADHD and hates it because he says it is "where all the freaks and geeks hang out" and completely doesn't want to be seen like that. I think there are different gender perceptions as boys seem happier to be high energy ADHD and sporty but not academic and "geeky" which is somehow perceived as less masculine. He is still glad to have his diagnosis though, just to stick to the thread, because he has had a lot of help to focus for his homework, revision and coursework and will get extra time in exams.

Maybe the school is somehow doing something similar?

I have spoken to the LA they sided with the school and said it is being followed because the school said it is, it isnt.

You don’t have to accept it. Speaking to the LA isn’t enough. Where have you got up to in terms of enforcing the provision? Have you sent a pre-action letter?

To clarify I made an official complaint, they responded saying the school are following it so it’s my word against theirs. I applied for the ehcp as they werent on board with it anyway.

Initially I got ds diagnosed at primary - it encouraged the teachers to take a beat before reacting - his life was less stressful when his oddities weren’t being questioned. He didn’t really think about his autism at secondary he denied it and thought he was misdiagnosed.
Then at Uni he met other kids who were autistic and he learned about how he should be and what rights he had and how people around him needed to change - that was not helpful when it came to getting a job, he used his autism as an excuse for not doing things he was perfectly capable of doing and I spent a lot of time undoing the crap he had allowed himself to be fed. He has things that he finds hard but they are his things and they are different to other peoples things. Life is limited enough without adding other people’s difficulties to your own.

If provision is detailed, specified and quantified in F but isn’t being provided, you need a pre-action letter. If that doesn’t work, you can look to move on the JR proceedings.

I agree. I have a few friends who put it off and by high school the kids were experiencing severe mental health issues due to years of masking and not having that insight into themselves.

My daughter requires very little additional support but knowing she’s autistic has helped her find other ND kids who feel like her people, and as a result she has had very few of the social issues a lot of autistic kids have.