To get dd assessed for autism against her wishes.

[NosyNeighbour22]

My dd is 12 and I now suspect she is autistic to some degree. Although I had earlier suspicions her primary school didn’t see any issues so I left it as she seemed to be getting on ok. However since moving to secondary school her lack of social skills had become a lot more apparent and I’m worried that she will struggle.

I have never told my dd I think she is autistic, I’m not sure how to broach that with her. However she does have certain sensory issues that sometimes make her life difficult eg can’t wear tight clothing or anything cropped or short sleeved which makes it difficult for her to find clothes in shops that sell to her age range. She can’t wear her hair up as she find it uncomfortable so she has to keep it really short for school. There has recently been discussion about her school uniform changing from a hoodie to a tie and blazer which I know dd would struggle with, so I used this to broach the possibility of finding out why she is so sensitive to clothing etc and told her that if there was a proper reason for it then the school might not make her wear a tie. However she was really upset at the suggestion that there might be something ‘wrong’ with her (her words) and said she didn’t want to go to the doctors or talk to the school about it.

There are other signs socially that there is an issue but dd doesn’t see them at all so I would have to point this out to her in a very blunt way for her to understand and she would be extremely upset by it. Had anyone been through this with an older girl and can advise the best way of going about it or AIBU for making her get assessed if she doesn’t want to?

I was diagnosed autistic in my 30's. That was a few years ago.
I really struggled in school. As I got older I struggled even more. High school was a nightmare, college was awful. I missed so many social cues. Didn't understand when people were making fun of me.
When I was very young, I seemed so much more mature than my friends.
As I got older, I seemed younger compared to my peers.

My parents didn't have a clue I was autistic. Neither did I.
It was my partner who actually mentioned it to me, several times as I struggle to accept it.
I had problems in all of my jobs, with colleagues and managers.
Eventually I was assessed and I'm glad I was.

Now I have a very successful career. I'm self employed doing a job I am extremely passionate in.
I understand myself better. I have learned so much more about myself.

Your daughter might change her mind about a diagnosis.
I understand that she thinks it would mean something 'wrong' with her, rather than something different.

When it came to looking into autism, and coming to terms with the fact I might be autistic, I found it helpful watching YouTube videos by Tony Atwood & Sarah Hendrickx. They include in their videos women and girls with autism. I found it helpful and it made sense to me.

I wouldn't do it. Diagnosis as a teen triggered significant mh issues for me.

Hi there

your daughter sounds just like mine who was diagnosed at 13 (social interactions, hair tied up, feeling of certain clothing, it’s all exactly the same). We didn’t really tell her she was waiting for assessment - we had got her on the waiting list via gp referral and it took 3 years to come through (which is such a lot of her young life it is criminal, but that’s another argument!).

the reason it was important to us to get a referral was that she was struggling with relationships at school and was getting into trouble because of it. She’s very black and white, likes rules and likes things to be fair, so was kicking off when girls were mean or bitchy to her and others, or if people were cheating at a game etc. we wanted something to help get her some understanding from the teachers at school that her reaction was not entirely her fault.

during the 3 year wait she actually started saying that she seemed different to the others, felt like a weirdo and it was at that point we discussed the possibility of ASD with her.

the diagnosis was a relief to her. With it came lots of help from CAMHS and school on how to think about relationships and social interactions better, and school now have been told by CAMHS that she has to sit with people she gets on with and feels comfortable with at all times. School have helped in so many ways with things like this, it has been well worthwhile getting the diagnosis. She doesn’t like certain situations - such as music classes where
there are 30 kids all simultaneously banging drums - and school let her sit in the library instead. Her diagnosis has not been made public by the school - it’s all very subtle - but it’s very helpful.

bur yes, I can see that you are in a tricky position if she doesn’t want a diagnosis, and I empathise.

I do think there are a lot of videos etc of YouTube that try to paint asd as a positive thing for a child. When what is means in reality is that high school is invariably a lot tougher mentally. I don’t find falsely painting it in a positive light helpful. You aren’t convincing the teen with asd who struggles socially. I’d love more resources about how asd girls esp can manage peer relationships better - if anyone has any please point me that way.

She has found the GCHQ adverts for asd girls is really helpful and positive though. Rules-based thinking can be a real asset - when you get beyond the high school playground that is!

An autism diagnosis?
Can I ask how did it impact your mental health?

Anger and rejection of the diagnosis for about 12 years. Depression and anxiety as I was told that I pretty much was getting everything wrong. Anorexia that I initially threw myself into as an alternative identity. I could have pursued a diagnosis myself if I had wanted to, when I was ready.

The UK Civil Service is very autism-friendly.

I wouldn't do it against her wishes. There is very little utility in being diagnosed unless she herself can experience it as a constructive framing for whatever difficulties she has.

Unless you have a very clear and realistic idea of what you actually want from obtaining a diagnosis, there is a danger that by forcing the issue you would simply be ameliorating your own uncertainty at the cost of foreclosing some aspects of her self-exploration.
There is also the risk that she will see you as forging an 'identity' for her that centres on her difficulties.

My son was diagnosed in his early twenties. He didn't find it helpful or welcome, and it didn't improve the support that was available to him.

DD was diagnosed just before her 14th birthday. She agreed to the assessment but afterwards we found out she only agreed to the assessment to prove that she didn’t have it. She couldn’t come to terms with the diagnosis at all - her mental health was already poor and deteriorated dramatically, to a crisis severe enough that she was an in patient in an adolescent mental health unit for some months. She is 22 now, a student currently on a year abroad, and has accepted the diagnosis (she also has ADHD and GAD) and come to terms with herself. The diagnosis alongside the mental health issues gave us enough evidence for an EHCP, which funded a place in a small, independent sixth form, which was integral to her recovery. I don’t regret the diagnosis but I would advise treading cautiously.

You can't do it against her wishes. She could go to the appointment and say she doesnt want the assessment and that would be the end of it. Gillick Competency overrules your decision.

Those things are quite common for undiagnosed autistic people though. At some point the masking that they don’t realise they’re doing gets to much and they can’t cope leading to a huge number of issues.

Thank you everyone who has shared their experiences, really helpful to hear how others have dealt with this.

I honestly don’t think she is aware that she is ‘different’ for want of a better word, because she has no social awareness at all and she seems completely oblivious to everything that goes on around her in social settings. I’m fairly sure that she will begin to see the difference as she gets older. I would like to talk to her about it properly but as she is unaware that there is an issue then it’s hard to find a way to raise it without it seeming like I am criticising her or telling her she is different.

I wouldn't what if she qants to emigrate? Certain countries won't allow citizenship with autism

Join the military?

I'm actually going back and forth on wether to formally have my children diagnosed. So far I'm on No as the benefits do not outweigh the issues that the diagnosis will cause.

Lots of jobs require various clearances but what exactly about asd is an issue which would make you fail the clearance? If you have a registered disability your potential employer has to be extremely careful not to discriminate. Apart from very specific roles an employer can’t ask medical history until after offering you the job, they also usually have to interview disabled applicants if they meet minimum criteria, they don’t have to if not disabled
i can’t see asd listed on the army website as a barrier to acceptance?

There was a very clear before and after for me. My mh difficulties were very much linked to the diagnosis itself and the fact that people wouldn't just forget it had happened and never mention it again, but kept bringing it up. It took me 12 years of anger, denial, depression, trying to escape into other identities, to come to any level of acceptance at all. I still struggle to talk about it at almost 40.

@Postapocalypticcowgirl -

Regarding teacher training courses… really?! I can’t see any way that isn’t discrimination (I am neurodivergent and a qualified teacher and was never an issue for a second, I know quite a few others). Do you actually know of this, in the UK, or have you heard it third hand somewhere?

@Bigbadfish - Have you considered the benefits to your DC’s own mental health, in your analysis? Or being aware of and being able to understand their own neurotype (and of not thinking there is “something wrong” with them instead)

Labelled?

And the benefits are quite obvious, she will be able to access support with a diagnosis, extra time in exams potentially, greater employment protections, heck even maybe benefit from positive discrimination in organisations where there is an active drive to hire ND employees.

Yes, I work in a special needs school so am well versed in how to work with and parent neuro divergence. And also the fact I've been doing it for their whole lives.

Again, at present a diagnosis does not offer many benefits especially having to lean on the NHS. As they grow I will sound off with them and leave the decision to them. Going through all benefits and negatives at that time.

Autism is no more a label than “asthma” “diabetes” or anything else. It’s a diagnosis and one that can help ensure the right support is in place if needed

Thankfully the UK military no longer discriminate against those with an ASD diagnosis and haven’t done for many years.

Before Ds was diagnosed 6 years ago I was warned it would stop him being able to go into the military. But I’m glad it has changed now

There was a thread about a couple of days ago about how to tell the child about the diagnosis. I think the child was younger than your DD but it included links to reading material too.

Why is it everyone goes straight to autism when their child has issues with some things? It could be dyspraxia it could be sensory processing disorder it could be she prefers being away from others and some fabrics feel itchy due to sensitive skin. Maybe speaking to her about why she doesn't like these things might help to understand the reasons. Then you will be in a better position to know if considering an assessment is worth while. However unless she is really struggling in school and needs an ehcp then an assessment is not going to magic the problem away. A diagnosis can take years. It took 7 to get my sons. That's 7 years where he struggled in school with no support falling further behind. Probably because the system is so overwhelmed it's near impossible to get in unless you keep fighting. If your not 100 percent certain your child NEEDS an assessment to get support that will make a massive difference I would seriously think about whether it will actually be a benefit to her. As for another child that assessment could make a huge difference to the rest of their life.

A friend talked about a book called 'can you see me' written from asd girls perspective. You can get it as audio book too. Perhaps it's a way of opening a dialogue