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
.
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.

Bump

Yes, even though they didn’t need any help academically they did need some support with other things, including at university.

She might not need additional need now. Ours didn't need any before secondary school.

Im pretty sure she won’t require any in secondary school either and even though my boys are diagnosed the school does not follow their EHCPs anyway they are not worth the paper they are written on if im honest, starting to think they are only beneficial if you want your child to go to a special school

DS was diagnosed at 16 in the middle of his GCSEs never had any support at school and now at college whilst they are aware of his diagnosis and have offered he has declined any support. I doubt he will ever need any formal support but the diagnosis has helped him understand himself and the fact the college know puts my mind (and probably his) at rest in terms of if something starts to unravel they are already aware and the conversation doesn't have to start from the beginning.

School have recognised it which is quite rare.
Have you considered she might present very differently to your boys, but still have her own needs?

Yes im sure she does but I often think if you have one diagnosed people are keen to push diagnosis on the others too, other than struggling with friendships i can’t see any other traits and thats why they’ve suggested it because she straggles with friends she doesn’t get any support there

Yes, dd was diagnosed at 14, so although at 9 you may not feel she needs it, by 14 things might be very different. Dd was fine playing alone and being called "too sensitive" for struggling with loud and violent boys, but when the teenage years hit the girls seemed to just not get on with her. She was on sports teams and ignored and even physically moved in the team minibus as one girl wouldn't sit next to her, school did nothing. She was good on the team but felt pushed out because the girls were all "popular" ones and liked boys, fashionable clothes etc. It became far more obvious she wasn't fitting in with that group, and was more academic, which they also ribbed her for. She gravitated towards the ND in every lesson she was in, herded them all together across the year group and now has a lovely friendly group of friends for life I think. So from her perspective,on a friendship level she knew before she was diagnosed which group she "belonged" to.

School wise she wasn't given extra time because she finishes exams ahead of time and didn't get any for her dyslexia either because it is assessed as not bad enough for needing time. I did struggle with this because she misreads things, misses words out and her brain fills them in when she reads it back. However, time isn't going to help and as her lowest grade was a 6 the school didn't care enough to push for it, which in hindsight was fine but might have changed A' level choices and ultimately degree.

Main support school did give was having SEN groups and understanding that if she didn't have her anxiety meds she would struggle if put on the spot in class and go mute, seating arrangements for exams and class really helped too.

My story is that I have 3 girls. Middle one diagnosed in y5 and went to secondary with full ehcp and secondary transition has been brilliant. Eldest undiagnosed at secondary school left one school end of y8 then y9 and 10 and 11 mostly very tricky diagnosed adhd autism dyslexia dyscalculia and ended up in a hospital school for y11 - so for our ten year old we have gone for diagnosis now so she has the support and understanding for secondary transition. We get the answer next week (she’s had the assessment) I will be very surprised if it’s not yes.

I would massively recommend thinking seriously about diagnosis for girls I know way too many people pleasing maskers who burn out at secondary. We have had FND crises and chronic fatigue and migraines and all sorts with my eldest and I wish we had spotting things sooner so we could have had another success story like with my middle.

I got my autism diagnosis at 44 and my adhd diagnosis at 38 and I wish I had known sooner instead of hating myself for so long for being too loud, too blunt, too sensitive, too controlling, too much, and so on.

Ps though my older two have EHCPs my youngest is a genius kiddo she won’t need send support in the learning sense but in the supported social communication sense she may. But I still think worth finding out to support your daughter to understand how her brilliant brain works.

A lot of autistic children cope in primary school, but need additional support later on. I would say if the school are picking up on it to the point that they want to do a referral then it probably is quite noticeable in the school setting. And as for understanding yourself, I do think that’s very important. It can completely change your perspective of yourself to know why you are struggling socially and what traits/things you are doing are likely causing that, instead of just thinking you’re unlikeable.

I am an adult who got mine as a teen. It did help with support for uni. I got one to one mentor, a free laptop, and other additional things. These all really helped me and I wish I’d gotten a diagnosis sooner. I should have, but my mum and dad didn’t really think I was autistic because there autistic people in our family and I was just seen as “odd” like them. Because I was academically successful it was seen as okay.

My son is 6 and we have gotten him diagnosed. He is fine in school, but I recognised it early and tried to just get him the help asap. I think it’s great for him, he’s got more support now - but I know when he gets older it will get harder (based on my experience) and I’m glad he’s got the support now. Also he’s used to getting the support and he knows how to ask for the help he needs and interact with it if that makes sense? IMO, the sooner the better but it’s up to you as you know your son.

Diagnosis does make things easier at secondary school, even though it is supposed to be in need not diagnosis. Many of the autistic girls I know were fine at primary but really struggled at secondary. At university, DSA is only available for those with a diagnosis.

I would recommend referral - it can take forever, so I would take the referral before you think you need it as by then it could be too late.

Is anyone’s children resentful for having a diagnosis then? I guess it’s because my son is so unhappy about his diagnosis im worried she will feel the same way and if she has even less support needs than him she might not thank me for it

She doesn't have to share her diagnosis unless it was helpful to do so. My older DD refused to tell anyone about hers - she was diagnosed as a teenager. The only person she told was her best friend, who was diagnosed a few years before her. By university she had settled into it and didn't care who knew!

But it did help her to understand herself a lot more, made a huge difference to her self esteem once she realised that it wasn't just her not trying hard enough.....

I truly believe it's a mistake not to.

You can't possibly predict what support she may need in secondary and further education, uni, work or adult life, and having it sorted well before then makes things easier when and if the support is needed.

She doesn't ever have to tell anyone if it doesn't become relevant later in life.

Support should be given regardless of diagnosis but I understand what you are saying

My son didnt, the children have just guessed Tbf it’s pretty obvious he is.

@CakeyBakes if they are going to guess anyway, what difference does it make?

I meant my son is more obvious i guess, my daughter less so but it’s more how she might not feel happy to be diagnosed? Maybe I should wait till shes a couple of years older and see what she thinks?

Totally agree, but it doesn't work like this so as parents we have to get the system working for our children as best we can.

A lot of autistic girls don't need support until secondary school.
I very much doubt your sons diagnosis is the reason he is bullied, they would have bullied him with or without a medical diagnosis. If your DD does get diagnosed she doesn't need to tell any other children.

Should be, but in my experience, it’s very often not given without a diagnosis.

I have known many girls that sound like your daughter. They do incredibly well in the nurturing environment of a primary school but that all goes to shit in a secondary school with more kids and increasing expectations on everything including social skills.

My sons both have EHCPs and they are not worth the paper they are written on so in my experience it doesn't change much is what I mean I guess

They call him acoustic, I didn’t even know what that meant when he first told me I thought I had misheard and it he is also called “DSP” (name for Sen units in our borough)