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.

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.

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.

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.

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

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

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

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

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.

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.

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 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.

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.

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.

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.

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.

I wish I'd been diagnosed as a child. I think that it is easier for some girls at primary school age because they are able to learn to mask and mirror. I found secondary school brutal and I can't bring myself to think about how awful it was for my son. It would be good to know she has support in place. I don't think my son would have survived without the support from the senco and support staff.

Wow!
Just because you have a child who you describe as severely autistic doesn't mean that those on a different part of the spectrum should be minimised. It isn't a race to the bottom.

Having had a diagnosis, I was very able to help mine through her suicidal thoughts, having accessed courses through ASD support providers.
Do not play down the benefits of knowing and being able to help a dc with ASD, rather than just thinking they are quirky whilst they battle their demons.

Ok that's good for your child. My opinion though is it's being over-diagnosed at the moment. The definition of ASC is that its a communication disorder and a lot of people I know who have been diagnosed with it have no issues with communication. I have other children who probably would also fit the criteria for diagnosis (as it seems very easy to get a diagnosis now) but I don't see the point in labelling them with something when they are managing fine. Just my opinion which I am entitled to.

Cautionary tale:

DD2 struggled in primary but got through it. On the ASD waiting list from 9-11, then diagnosed. By year 10 she was completely out of school due to anxiety. She ended up in independent special schools and is just about to start college with 1:1 support at 19 on a level 1 course despite being bright.

DD3 coped well in primary school and seemed to thrive. She struggled a little with secondary school. Grade 8-9 student. By year 8 she wasn't eating or drinking at school, by year 9 she had tics and needed SEN support. By the beginning of year 10 she was out completely with severe OCD. Later diagnosed with ASD and ADHD. It took a year for her independent special school to get her into school, and she's now getting 2 GCSE results tomorrow. Next year she'll do another 3 GCSEs and then we'll think about starting college if her mental health is good enough.

If school are flagging it now, she's struggling.

@pimplebum curious about the 10-20k help figure? My son struggles academically, is diagnosed autistic and certainly hasn’t been offered that kind of help

You are entitled to your opinion, which aligns with that of much of the right wing media.

It's not easy to get a diagnosis.

Communication is more complex than "being able to speak".

I've taught autistic kids who were academically able and perfectly able to communicate, but who had no idea how to function socially in groups, which made their lives harder than necessary.

I wish my parents had tried to get me a diagnosis or support. I was in the top class for everything at school, no problems academically, but I also tried to commit suicide several times as a teenager and had an eating problem. Studies have shown autistic people have an increased risk of suicide. Having a diagnosis can provide an explanation for feelings and a community to identify with.

Girls, especially intelligent ones, are masters of masking and hiding their struggles. My parents
also say I had no difficulties at school. I did. I was good at hiding them. I now have diagnosis of autism and ADHD.

I was also surprised by that figure.

My DC has an EHCP which nominally comes with £5k of funding, but it is hard to say what that actually goes on and parents aren't entitled to a breakdown.

In my experience schools aren’t very interested in kids who are under the radar. If they think she needs some intervention I would take heed, as others have said she may need support down the line.