AIBU not to pursue autism assessment for child coping well at school

My DD was the perfect primary school pupil.
Super bright, super nice to the teachers but struggled socially.
The wheels fell off in year 8, she was diagnosed part way through year 9.
School has been good with her anyway, she was at a grammar, where the number of SEN children was nowhere near that of the mainstream school I worked in at the time.

The diagnosis came into its own during exam time when adaptations were made.
She didn't sit them in the exam hall, she was in a quiet room and had extra time.

Sounds like my nephew who has been left without a diagnosis . He went (mostly friendless) through high school and college, went off to uni and lasted six weeks. At 23 he’s now really quite lonely and depressed.

I pursued a diagnosis for my bright, quirky DC who wasn't having any issues at primary for 2 reasons:

1, because I know that often ND kids struggle in their teenage years and it can take a very long time to get a diagnosis. I wanted that diagnosis in place so he could get the help he needed if/when he needed it, not have to start the process of diagnoses then.

1. I wanted to gift him the language to describe his own experience. To give him the words he needs to be able talk about how his brain works, and when he's older, to be able to research it if he wants.

Please don't underestimate how important this is. I grew up as a child and young woman with undiagnosed ADHD. I didn't have any words to describe how I related to the world, I just felt odd and different, which I often translated as plain "wrong". You wouldn't know this from the outside.

I don't see the point in unnecessarily labling your child. She's fine, has friends, bright and doing well at school. I don't get this obsession with everyone getting an autism/ ADHD diagnosis at the moment. I feel that autism has lost it's meaning. So many people tell me they are autistic and they are clearly not. It's insulting actually to people who actually struggle badly with autism. Just let her get on with her life. Its ridiculous. This is coming from someone who has a child with severe autism so I have that perspective.

My DD mostly coped fine in Infants but it all fell apart in year 2 when the work got more formal, and juniors has been even more of a struggle. I am very glad she got her diagnosis and EHCP as she's now going into year 6 and it's becoming abundantly clear that she will not manage mainstream secondary. While support should be based on needs not diagnosis a lot of specialist schools and ARPs do require the diagnosis.

Just because she isn’t struggling now doesn’t mean she won’t in future and given that the process can take years, why would you want to wait until things get bad before you try?

I have autism and ADHD. I wasn’t diagnosed until my 40s. I was very like your daughter at that age - very bright and able to play with other children, but also always just a bit on the outside. I’m sure my mum thought I was doing fine too. I wasn’t. I was lonely, I worried others thought I was weird, and I always felt like I didn’t fit in. I also felt anxious all the time because of the pressure of masking constantly.

My DC went through periods when they were absolutely fine in school and other periods when they needed a lot of support. One teacher described it this way: so long as the demands on the child match their abilities, all is well, but when there is a mismatch there's a big problem.

Social expectations from adults and from the other children will change as your DD grows up. What's a good match for her now may not be a good match when puberty approaches (for herself and for her friends) or when she switches to secondary school.

If she is being offered assessments - not a diagnosis, she may not qualify for a diagnosis and if she does then her diagnosis may not be the one you expect - then it's a good idea take the offer up. The assessment process will help to pick out the specific areas where she needs more support even if she doesn't get a diagnosis. And the later you leave it the more difficult it gets because many teenagers just want to be "ordinary" and will refuse assessments even if they are struggling and need them.

Ah a previous poster has said grab it with both hands.
I didn't know I was likely audhd and I honestly just thought I was broken growing up. Being a girl no one knew and even now I can mask so well. But behind the scenes in struggling.

Having my child diagnosed has really helped us all as a family to understand ourselves but ofcourse for my child. It has however taken years to do. We started in reception and we still haven't got a ehcp, they will be 9 soon.
I am very anxious for secondary school.
My child coped in reception but at its worst my child couldn't attend school at all. So I had to give up work. You don't want to wait till the wheels fall off. Hopefully they don't but better to have the support in place than not.

Get the EHCP. Transition to secondary school can cause a total shit storm and you'll quite possibly need it for back up.

I could also write this almost word for word. Got bad last year of primary and been horrific in secondary. We are attempting another year in Sept but might pull him out

It can be 10-20 k of help you are rejecting

As someone who wasn’t diagnosed until their mid-thirties, please get her a diagnosis.

She's not struggling now. Teenage years may be very very different.

You can get a diagnosis and do nothing with it. Just have it sitting there ready incase you need help further down the line.

For example access arrangements for GCSEs. May she'll want to take them in a quieter room? Maybe she'll want to wear ear plugs in a secondary classroom that is too noisy for her. The waiting times for diagnosis are very long. Don't wait until she's a teen and it becomes urgent.

We spoke to our then 13 year old child, and again at 15 and 17. They continued to feel that a diagnosis wouldn't change anything, and they were able to access everything they needed in any case. We worried about university, but visited a few and picked one strong in SEN. Child continued to choose not to be assessed/diagnosed and is doing very well considering their quite noticeable difficulties/needs. In mid twenties, they persist in feeling that their 'knowing' is sufficient for them. Hope this helps in some way.

Definitely get the diagnosis. I was that child and massively struggled when I was older. If you can prepare the ground now just in case, it will really help reduce life-long issues.

Put it this way. If you get the diagnosis and she doesn’t need then there is no real downside. If you don’t get the diagnosis and she needs then there is a real downside to delaying.

I was diagnosed with a couple of mental illnesses in my late teens / 20s and always wondered if actually I have some ND.

Yes, same here and I'm now certain it's actually adhd. Means I'm aware for my DC that as they're ND (diagnosed) then they're more likely to have issues at times with their mental health. It's good to know now, ahead of when they might need more support. I wish I'd known for my past-self

Absolutely grab this with both hands! Waiting lists here are horrendous and my 12 year old grandson will have left school before he's even close to being assessed if the list continue to be this long.
If the school see a need then I would go along with it, that way you won't have regrets further down the line.

My eldest was very happy in primary school and doing extremely well. He sailed through the Transfer Test (we’re in NI) and got into grammar school. He was generally a very biddable, easy child, albeit with some noticeable ‘quirks’ and a few difficulties interacting with his peers. We decided to have him assessed when he was 12. The waiting list was long. We knew he had ASD by then. It was becoming more obvious in his behaviour and just around the age of 14 - STILL awaiting assessment - everything went to shit in a very spectacular way. He was eventually diagnosed at 16, closely followed by an ADHD diagnosis. Honestly, don’t underestimate what those teenage years may bring. I think the diagnosis gave him ‘permission’ to understand himself, even though he knew already that he was autistic.

My son was coping well until he wasn't. The transition from infant to junior school was very difficult for him and had me running to the paediatrician begging for an assessment. The transition to secondary school was beyond horrific and caused trauma that he'll probably never recover from.

Even though she’s doing well academically, school must see something that is making them think this would be worthwhile for your DD. Like a PP mentioned, if you do decide to pursue a diagnosis in secondary you may be waiting several years and possibly working with school staff who don’t pick up on the things her primary school have. It’s worth giving it more thought rather than dismissing the idea because she is doing well in her studies right now. Many of the autistic young people I work with find higher levels of study incredibly stressful. Primary school can be a very supported, nurturing environment compared to secondary school.

Is she in a state school? I'd be quite surprised if the state school wanted to pursue an IEP for a child who wasn't struggling in sum. Have you asked specifically where they feel she is behind in social skills? An IEP doesn't necessarily mean a diagnosis or that support will be long term or permanent.

Also, I presume you've already considered whether you yourself might be autistic and that "typical to you" might not actually be typical?

My autistic DS sounds quite similar to your DC. He's currently doing quite well in primary school (very academic, quite popular with his peers, makes friends with kids in playgrounds - even if his approach isn't always totally typical) but he's had periods previously of really struggling and quite challenging behaviour. I fully expect they'll be later periods that are more challenging, too, and I'm glad we've got the diagnosis for that reason.

we have not pursued diagnosis with dd2. School have never expressed any concerns and I mentioned it to gp as she has been highly anxious and they were dismissive. Like others she was ok in primary, academically bright and okish socially. Puberty hit and it all went a bit wowzers. A lot of friendship issues, anxiety through the roof etc. but still no one suggested a neurodiversity.

in trying to find out how to support her we have identified a lot of ND traits. But also lots of things where she doesn’t seem to tick the box. So who knows - we certainly dont!

what we do now is try and use the same strategies that we may have done if we had a diagnosis, talk openly with her about the possibility and she’s been given the option of trying to get an assessment (she’s 16 now). She seems much happier since we have kind of leaned into it (we’ve managed GCSEs and a first boyfriend without the wheels coming off).

i think in hindsight not getting any concerns from school coupled with covid hitting when she hit puberty meant I thought I was being paranoid and perhaps I would have pushed more. Also she does genuinely seem so much happier and more at home with who she is now so it feels less acute. But we are always open to supporting it if she wants to pursue at a later stage.

How old is your child. My DS was fine at primary and school wouldn’t support or even discuss potential ND with me. He’s really not fine at secondary. I’ve just had his referral for assessment rejected as what I say and secondary don’t align

I can understand your thinking, but if she is autistic, then she'll be autistic regardless of whether she has a formal diagnosis. Knowing why you're different is more than a label. It's a gift that helps you navigate every part of your life.

As others have said, 'not visibly struggling yet' doesn't mean 'will never struggle later'. If the school are seeing signs then there's clearly something driving that. I would go with their judgememt that this is worth looking at further and start the process now.