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

[IsaTheIguana]

I have 2 DC, elder is diagnosed Autistic and has high support needs.

DC 2 is a girl, very bright academically, quirky, very noise sensitive and fussy with food / textures, I see her as a mini me but smarter and nicer than I was at her age. Has some friends but often plays alone. She is not being bullied and seems very typical to me in that she will play well with random kids at the beach or a playground.

School want to do an IEP to help her social skills. They clearly think she has ASD - my AIBU is - I have no current plans to pursue a diagnosis as I cannot see what benefit it would serve- but, am I BU? I just feel weird starting the process for a child who is not struggling.

I suppose the thing to consider is, although she is not struggling now, she may struggle along the line and a diagnosis may help her get the support more quickly when she does need it.

I have known people who were diagnosed as an adult. They have said it helped them make sense of their teenage years. I believe it can be helpful to understand yourself and why you think the way you do. It's often harder to pursue an adult diagnosis, at least on the NHS, so I would consider it now.

This was my dd at 8. At 13 she is struggling massively and due to the system being so overwhelmed help is likely to take years.... If the school think it would help and are offering to pursue it for you take their arms off!

With the waiting lists being multiple years, a diagnosis that may not matter too much in a nice cosy primary school may certainly be helpful in secondary school.

An IEP doesn't set her on the path to diagnosis though.

I work with secondary age girls and see so many kids like this who are delightful and cope well, then they get to key stage 4 and the anxiety rockets and they begin to struggle badly. When there’s an issue at that age they end up on a waiting list that they are unlikely to reach the front of before they leave school.

My daughter doesn’t struggle too much at school (academically brilliant but quite anxious at times and some sensory problems) and the SENCO asked us the same. Thing is, primary schools are often good at putting in adjustments without a diagnosis (or ours is, anyway). I’m worried about when she goes to secondary, so I’m perusing the diagnosis now (age 7) as I know it can take years.

I also have 3 friends who are teachers who missed ASD/ADHD in their own girls at primary school- typical high achieving girls in primary but wheels came off when puberty hit (quite common I think) and issues with self harm, eating, school refusal etc. then a huge wait to be assessed. I’m trying to avoid that.

Just because you think she is doing ok and doesn’t need a diagnosis - she might disagree .
it’s not fair for you to decline on her behalf .

If assessment happens when things go wrong for an adolescent then they can see autism as the whole reason for things going badly. If they are autistic and understand differences and what they need re support/scaffolding and areas of strength and difficulty it can be more protective if done earlier for some . It’s hard as obviously that’s a blanket statement my priority with intellectually able kids is what would be better for mental health trajectory. I think there are many factors that determine whether a diagnosis can be helpful or not so it’s not just assessment itself but doing this in a way that supports understanding.

You don’t say how old she is, but my dd thrived at primary school and then burnt out completely at secondary. It was heartbreaking. I wish we’d known earlier. Speak to adults who’ve been diagnosed later in life - I suspect they would all say they’d have taken the assessment and subsequent support as a child if they could go back.

Also, you imply that your eldest is a boy - boys are girls present really quite differently. Look out for watch, follow, copy type behaviours with friends - this is how our dd managed to look ‘typical’ to most people.

I got diagnosed at 40years old. I would give my life again to go back and have a word or even someone to explain its my brain not a character flaw.

If you thought she might be dyslexic would you say well see how she feels about it when shes 30 burnt out and thinking if she tried harder maybe the words wouldn't dance and she could read.

If school want to help with her social skills, why not let them? It won't lead to anything more at this stage but may be useful evidence later on when you realise a diagnosis / EHCP could be very useful. It's better to build up evidence of issues as early as you can. Schools are much more aware of ASD than they used to be and recognise many children show signs of Autism even though they cope relatively well in primary school.

My daughter started to struggle in year 5 and was diagnosed mid-way through year 6.

Having that diagnosis before starting senior school made a world of difference, as her new school put a host of accommodations in place from the beginning.

She is now 13 and thriving, calm at school, happy to go and copes (mostly) with the sensory onslaught of a busy school/timetable. Still autistic but she understands who she is and what she needs. I know schools very much should support the need and not the diagnosis, but they don't all and you only find that out when it falls apart.

School have identified something. There is autism in the family.

It will take a long time for her assessment to go through the system. It may say no, she's not autistic.

Even if she's not struggling now, they have flagged that they expect her to be likely to have problems in the future. So take it seriously.

What you don't want is for her to get to high school and have a meltdown and end up really needing support and having to wait for two years if she is autistic.

Get the assessment.

If you have already been through the process with your elder child then you know How long it can take. Please support school to do what they think will help. If your Dd does need help down the line then school need months/years of evidence to prove it. You could end up in a real mess further down the line. Maybe she won’t ever need any of it. But you lose nothing by doing what they’re suggesting.

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.

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

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.

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.

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.

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.

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.

Child is 7. I will 100% support the IEP process. I had an easy ride with child 1 he was diagnosed 18m after being put on pathway and and there was an ECHP in place before nursery age.

I dont want to let her down, I was diagnosed with a couple of mental illnesses in my late teens / 20s and always wondered if actually I have some ND.

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.

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