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AIBU?

Would you push for an ASD diagnosis when a teenager doesn’t want to

34 replies

Whenyourefifteen · 09/01/2024 14:28

DS is 15 (year 11) and absolutely adamant he doesn’t want any support at school because he doesn’t want to be ‘treated differently’ and is worried about stigma and bullying. I think a diagnosis would open up access to a lot of support but DS is adamant he doesn’t want to. I’ve been told informally by many people (including professionals) since he’s turned 13 that they suspect he’s got ASD and I’m sure he fits the criteria. Aibu to ask for your opinion? 
YABU- yes push for a diagnosis against DS’s wishes 
YANBU- No leave him to his own choice 

OP posts:

Am I being unreasonable?

76 votes. Final results.

POLL
You are being unreasonable
24%
You are NOT being unreasonable
76%
Regulus · 09/01/2024 14:33

a diagnosis will open up a lot of support

If this is the only reason you are doing it then I wouldn't bother.

There is no support with just a diagnosis and little support with a EHCP, and you won't get one of those it time for it to even be a tiny bit useful.

Also at nearly 16 I think you have to take into account his feelings. Maybe if a diagnosis would significantly change things I'd feel differently but it won't. He will still have the same troubles.

GreatAuntMaude · 09/01/2024 14:34

Neither. I would ask him to watch some neurodiversity videos or do some research about neurodiversity before making a final decision.
I certainly wouldn't force a diagnostic process on a teen (and it's likely the team wouldn't progress it if he expressed that he did not consent) but I would maybe think that their "non consent" might not be fully informed "non consent".

Somewhere like autismunderstood.co.uk would be a good place to start. Written by autistic people.

ProfessorPeppy · 09/01/2024 14:35

At my school, we put students on the SEN register if they’re on the waiting list for assessment. He’s unlikely to get assessed before he’s 18 anyway, because waiting lists are 2+ years in many areas.

Therefore, get him on the assessment waiting list and inform school. They can put some background things in place for him if needs be, and he can decide if he wants to go ahead with the assessment at some point in the future.

Hankunamatata · 09/01/2024 14:37

If he doesn't want it then no I wouldn't. I have two kids with echp and tbh there isn't much extra support with that. A good school will have support in place for him diagnosis or not.

Hankunamatata · 09/01/2024 14:38

What support do you think dc needs? Id be focusing on this with the school, not a diagnosis

MumofAnarchy88 · 09/01/2024 14:42

See this is a hard one because ultimately its his choice, its something he has to carry long after your gone. But I can see why you would want to. Perhaps broadening his horizons would help, explain to him that whether he is diagnosed or not doesn't make him any less autistic....it doesn't change him he's still the exact same person. But what it does do is gives him support, finances (DLA) and opens up a whole new community of people that he will find accepts him for exactly who he is. I wouldn't push it on him but I would encourage him to educate himself, go online speak to other autistic teens and adults and find out their experiences. School is a very short period of time and a diagnosis could be needed later on in life and might not be as easily accessible as it is now. Find out about the autistic community in your area ...encourage meeting up with other autistic teenagers and speak to them about things. But as I said unfortunately it isn't your choice ....don't take his power away from him and disregard his wishes on this.....just encourage him to explore who he is and be ok with it...he needs to learn to accept himself autism is nothing to be ashamed of and I hope one day that's the opinion of everyone (with numbers rising it won't be long before the community is so big that there are just as many Atypical people as their is Neurotypical ) also let him read this thread and the responses from people. As I'm sure you'll have responses from Autistic teens and adults on here. My DS is Autistic and is nearly 9 ..he has been diagnosed since he was 3 and I've found our local community and school to be wonderful with him they fully embrace him for who he is but I am aware this could drastically change when it comes to secondary school xx

Puppupandaway · 09/01/2024 14:46

My DS has just had his asd diagnosis. The reasons we went for diagnosis at the age of 16 was so that he could understand why he feels so different and to help with his mental health. We've received no extra support. But, as he will be going to university it will be beneficial having the formal diagnosis as we can claim dsa and he will get counselling, a mentor etc. Plus he is getting 25% extra time in his A level exams this summer.

So, if your ds is planning on staying in education and would benefit from extra support, then it might be worth pursuing. But the asd assessments do rely on the young person engaging with the activities to a certain extent. So he has to be on board with it.

Emmainexile · 09/01/2024 14:47

So you want him to get diagnosed to access support when he has already told you he won’t use it?

YABU

BertieBotts · 09/01/2024 14:49

It should probably be his choice - not least because he will need to participate in the diagnostic process. BUT you might want to point out to him that unfortunately, stigma abounds regardless of diagnosis - and being regarded as "stubborn" "obstinate" or "rude" or "odd" or "antisocial" will garner him less sympathy from teachers than a proper diagnosis. Also that many of the teachers will be familiar with ASD so might well automatically be putting him into that box anyway.

In terms of bullying, it's totally his decision whether he even tells other pupils. It would normally be confidential information about a pupil not to be shared around the school.

TheCountessofFitzdotterel · 09/01/2024 14:50

You can’t physically force him to do it because you can’t make him turn up to appointments or talk. However with waiting lists the length they are there’s a good chance he will have changed his mind by the time he reaches the top. Get him put on the list and you can always cancel later.

blackteaplease · 09/01/2024 15:04

First pp has nailed it. A diagnoses makes no difference with support. SEN provision should be made on a needs basis but if your dc is rejecting all support I'm not sure what you can do.

Catza · 09/01/2024 15:09

No point. The support simply isn't there especially for adults (and he will be one by the time he gets an appointment). Most services operate on assess and discharge basis.

anothernamechangeagainsndagain · 09/01/2024 15:11

No at 15 I wouldn't because if someone has reached teen years without diagnosis, the amount of support is likely to be tiny if not zero - diagnosis doesn't equal support

CatPancake · 09/01/2024 15:12

Yes push for a diagnosis.

but stop talking about it. Appointments are few and far between that the child will be involved in

surlycurly · 09/01/2024 15:19

My 19 yr old DD absolutely had to get her diagnosis. She needed it and she wanted it. My 17 yr old DS is adamant he doesn't want a diagnosis, despite being obviously ASD. It would have made no difference to him positively, and he's achieved what he wanted to at school to date without one. I respected his wishes despite feeling like we should pursue it. The field he wants to go in to will be quite accommodating of his 'quirks'. My daughter, on the other hand, has wanted lots of support through school and uni and immediately tells people about her diagnosis. I think it depends on the person and the circumstances. Ultimately I think it has to be your decision as the adult, but trying to force an older teen to get one isn't going to be easy.

ntmdino · 09/01/2024 15:25

Regulus · 09/01/2024 14:33

a diagnosis will open up a lot of support

If this is the only reason you are doing it then I wouldn't bother.

There is no support with just a diagnosis and little support with a EHCP, and you won't get one of those it time for it to even be a tiny bit useful.

Also at nearly 16 I think you have to take into account his feelings. Maybe if a diagnosis would significantly change things I'd feel differently but it won't. He will still have the same troubles.

Actually, you might be surprised - my experience since diagnosis is only as an adult, but it's quite surprising how much is actually out there. There are the charity groups, but also things like guided walkthroughs at airports, call centres being more patient etc. Hell, even restaurants are willing to bend a bit and find quiet tables for us, and all of these are happy to be discreet about it.

@Whenyourefifteen - it could be worth pointing these things out to him, suggesting that the benefits of a formal diagnosis extend past the school environment...not least, because it'll allow him to forgive himself for the ways in which he feels like some sort of weird alien (that's my terminology for myself as a child...I wouldn't suggest using that with him unless he's described himself as such, obviously).

There's also the fact that, given a formal diagnosis, he doesn't actually need to act on it with the school - he can just keep it in his back pocket as an emergency "Hey, teacher, I'm really struggling with sensory issues today, could I be excused to the quiet room for a bit?" option. The school will almost certainly be glad that he doesn't require constant accommodations if that was the case, and as such I'm sure they'd be happy to work it in.

Personally, if he's thinking of going to university, I'd absolutely recommend it - when I lost my familiar environment and friends group in the transition to university, I completely fell apart both academically and as a human being. Even if he doesn't want anything from it now, the time may come when he really needs it...and the waiting lists being what they are, by the time he does need it, it'll be too late. So maybe you could sell it to him as future insurance, just in case?

The fact is, though, it's extremely difficult to formally diagnose an uncooperative patient - so your only real options are to sell him on the benefits, wait until he comes to the conclusion he wants to do it, or not do it at all.

TheCountessofFitzdotterel · 09/01/2024 15:38

Our ds is 17 and we are doing it in preparation for university (if he manages university). School have been great about supporting him without a diagnosis but this is unlikely to be true of bigger institutions where the key people won’t know him as well and who may be less flexible in their procedures.

We are doing it privately (CAMHS wanted us to after a mental health crisis but it took 6 months to even officially get on the waiting list for NHS) and ds thinks it’s a waste of money but is going along with it to humour us. Obviously if he was adamant we wouldn’t- couldn’t, as I have said above. However he is coming round to the idea there might be some point.

iPreferBooks · 09/01/2024 15:47

I'm 24 and recently diagnosed. Didn't have any support at gcse's or A level. It sometimes takes the effort of trying to 'manage everything' to notice that something was actually wrong. By then the demand of trying to keep up with my effort wasn't balanced.

Basically college was a complete nightmare and I dropped out of A Levels to do something coursework based. I'm now at uni and have appropriate acommodations/adjustments in place.

I don't think you can force him to get diagnosed if he doesn't think anything is wrong, although if he does use something like Tiktok or youtube it might be worth encouraging him to watch some ones that might be relatable to him.

Whatevs23 · 09/01/2024 15:51

I don't know that an ASD diagnosis would open up a lot of support. The reason I would want it for my child would be because the more knowledge a person has about their neurodiversity the better. It just helps in understanding struggles and behaviors. But at his age I think it has to be his decision.

surlycurly · 09/01/2024 16:03

And a diagnosis doesn't mean that you can't parent him as someone with ASD, or that the school can't support him accordingly. It's widely accepted in my family, and at my son's school, that he is undiagnosed ASD. He gets alternative arrangements for exams and his head of year is great. We've also worked with the Ed psych at the school for school refusing and selective mutism, both common with kids with ASD. He accepts it to a degree himself, just doesn't want to formalise it. It is tough though, good luck with whatever you/ he decide.

Regulus · 09/01/2024 16:03

@ntmdino I'm glad to hear that, I shield have said I was thinking in a school sense. However all the things you mentioned probably don't need a diagnosis- I can't imagine any of those scenarios asking for proof. It relies on you being willing to share the details which the teen doesn't want to do.

Ultimately I think it has to be your decision as the adult, but trying to force an older teen to get one isn't going to be easy.

I don't think it is the adults decision at 15, providing gillick competent.

Mariposistaa · 09/01/2024 16:10

At this age you can't force him.

Crazycatlady79 · 09/01/2024 16:12

If you think a diagnosis will open avenues of support, you clearly haven't done your research.

At his age, the decision should be his, not yours.

willingtolearn · 09/01/2024 16:18

Echoing others.

We had a diagnosis at 11 to re-enter secondary school. It wasn't easy but it meant the school viewed them as 'having a problem' rather than 'being a problem'

Around 14 they totally rejected the diagnosis, refused all help and support and have done so ever since.

It has made university life (who have no idea of diagnosis) particularly difficult and the only support accepted is from us. Independent living has also proved tricky and the whole process of finding and working a job is also going to need some help.

Not that there is much support out there as far I could tell - you get given the diagnosis letter, some leaflets and off you go. It's very much up to you to hunt down support and find out if it works for you.

GreatAuntMaude · 09/01/2024 16:20

Crazycatlady79 · 09/01/2024 16:12

If you think a diagnosis will open avenues of support, you clearly haven't done your research.

At his age, the decision should be his, not yours.

Everyone is being very cynical but actually a diagnosis does make a difference, even if not in "one to one support in class".

A diagnosed condition means exam special arrangements are covered by equality act reasonable adjustments and much easier to arrange.
It means he can go on to get DSA much more easily at uni if he wants to go - this can be really helpful and the difference between succeeding at uni or not. He could also get priority quiet housing etc.
He would also be entitled more easily in adulthood to workplace adjustments, again via equality act.

Most importantly a diagnosis is important to understand who you are and who your community is.

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