13YO DD "doesn't want to have autism"

[LaMigraine]

DD, 13, has been struggling with her mental health for over 2 years now, suffering badly from anxiety and intermittent depression. She's in therapy, which is certainly helping, but starting school again after the holidays has really set her back, and she has started to self-harm again (she had stopped for a few months before the summer).

Her therapist (who I really rate) thinks there is a possibility of autism, and I agree – I have always wondered whether there was something, but it's only really in the last 6-12 months that autism has started to be clear as a possible explanation for a lot of things that affect her and the way she responds to things.

I mentioned the idea tentatively to her but she is absolutely adamant that she 'doesn't want' to have autism, and doesn't want to go down the route of assessment or even consider the idea really. I can't and don't want to force her, but the trouble is, I think it would really help her to a) get the support she needs (particularly important at school, where she really struggles) and b) for her own understanding of herself, self-acceptance and making peace with who she is and why she feels as she does, instead of blaming herself for being 'weird', etc. She said 'I already feel bad about not being normal, I don't want to be autistic on top of everything' - I tried to say that maybe autism is an explanation for being different, rather than being an extra layer of different, IYSWIM, but she couldn't see it that way.

I worry so much about the self-harm and about her depression, and she's already having therapy. Surely a diagnosis would open up so many more ways of helping her - but how can I persuade her of this?

I feel for you. Going through the process at the moment with my DD13.
She read some books about autism in girls (fiction) and realised she identified with them. Would your daughter look at that?

It could be helpful to know for many reasons - not least because certain types of therapy must be adapted for autistic people - eg CBT, if not adapted, is ineffective and sometimes harmful.

I have a daughter the same age with the same difficulties. Her autism diagnosis has helped her understand herself better and ensured the mental health input she gets doesn’t make things worse.

Hi, I'm sorry - this sounds really tough. Personally I would follow her wishes and back off for now. It sounds like she has a really negative idea of what autism is like and that she hasn't got the headspace for dealing with a diagnosis now.

There is a fantastic book by an autistic stand up comedian "Drama Queen" which is very funny and might make her feel a bit differently about what being autistic could mean. It definitely knocks a lot of autism myths out of the water - like autistic people not being empathetic, or having a sense of humour.

I think even if you got a diagnosis for her it wouldn't necessarily open up support - my son is 10 and was diagnosed as autistic just over a year ago. The diagnosis definitely helped me understand him better and has been useful in explaining his frequent school "refusal" to his school, but we've had very little in actual practical help. I've found my own research more helpful - there are some great facebook support / advice groups out there as well. Anxiety is super common in autistics and a lot of it just seems to come from having to make their way in a world that isn't designed for them. Are her school supportive? Maybe she could join some interventions without a diagnosis?

Sadly this is me. I’m certain I have autism but I’d never get tested or want it on my medical record. It can stop you getting certain jobs, and there’s a stigma around it

@Whisperedew which jobs, exactly? I was diagnosed at 29. It’s made my life better, if only because I understand myself a lot more and I have rights under the equality act in the workplace.

You don’t have to declare it to employees.

My Dd was like that at 13. She’s 16 now and l managed to talk her round just before her 16th birthday. She still goes in about not wanting it, but we’re in the waiting list.

l find bribery worked better than anything else.

There's a great series of books written by an autistic 13 year old girl together with a children's book author. That might be really interesting for you / your daughter to read. She's written a couple of fiction books based on her diaries, about what it's like in year 6, 7 and 8. Try looking up "Can you See Me?" by Libby Scott.

Op, I second the literature recommendation. If she has a good school library then the librarian will know exactly what to recommend. Otherwise, it’s easy to find what you’re looking for on lovereading4kids.org. Fingers crossed for you both.

I was a very confused and depressed teenager who didn't know at the time that I was autistic.

Looking back with that knowledge had helped me understand that at the root of all the issues I had was the autism, driving everything.

I think a good way of explaining to your daughter might be that her autism is like her operating system, and she runs a slightly different operating system to a lot of people BUT there are also millions of people out there running her operating system too. The operating system is what's driving all the problems she's having, but once she understands it, learns about it, accepts it, her problems will reduce.

I was in this situation. I honestly still struggle with these feelings, so I can’t help much.

One thing I’d avoid is the ‘autism is a superpower’ narrative. For some people, maybe there are benefits. However, for a lot of people all it does bring is negatives.

I wouldn’t say that last bit though, for obvious reasons.

But the ‘autism is actually great, you should be happy’ always seems so condescending, especially coming from non-autistic people.

YES to everything here.

Do whatever it takes to have her assessed."Knowledge is power".I suspected for a long time that I was on the spectrum.Only recently confirmed.It explains so much.

Yeah the superpower thing is irritating. I see my autism as a sort of shadow or ghost that I have to try and understand and get on with, because we are stuck together for life.

@tithead22 I want to work in the police.

I would probably let the suggestion sit with her for a bit.

Don't mention it again, but if the therapist also agrees they might be able to adjust their approach / explore some of the feelings around it.

The books might be good for her too.

Having talked with some girls who have been diagnosed with autism, they have mentioned that some people on social media and tik tok say that they are autistic and are self - diagnosing. I think it might be a thing to think that some peers wear the identifier as a kind of label and that this is an irritating thing to do. This is what these girls had told me.

However, I think that given time to think things through, your daughter might start to think as you do, that professionals could put some help her way. She might begin to see that what you are saying is about her, is addressing complexities rather than trite stereotypes, and that, if she starts to explore a bit, the previous connotations of 'autism' ( trendy ND) might not be of any relevance or importance to her.

@Whisperedew

National Police Autism Association

www.npaa.org.uk/

Google autistic YouTubers theres loads of girls who are really cool spreading awareness and your DD will possibly enjoy watching

My daughter was the same, referred by school, had the assessment after waiting 2 years. She didn't want the diagnosis so the clinical psychology team respected her wishes. She is now waiting again to be seen having changed her mind several years later. Give her time, like others have said reading material or watching YouTubers is a good place to start.

I suspect I’m autistic. Both my dds have been diagnosed and I’m diagnosed with borderline personality which a lot of women get misdiagnosed with.

I think for now, let her be. You’ve opened it up as an avenue for conversation but maybe she needs time to accept it. The Libby Scott books are good. My dd is 13 and diagnosed as autistic and really dislikes it. I suspect it’s partly as a teen it’s very hard to be different.

@unicormb's advice upthread about the different OS is a good one and is often used to describe the affects of neurodiversity, usually along the lines of the majority of computers work on Windows, but some use Mac. Both are computers, both can do the same things, but they do them a different way.

OP the more examples you can find about differences not being wrong will greatly help your daughter's understanding of herself.

Some cars use gears, some are automatic, they can both do the same things. One type isn't wrong compared to the other.

Some cars use petrol, others use electric or diesel or cooking oil, they are all different, or work in a different way, but can do the same thing. Neither type are 'wrong'.

Some people are left handed, some are right handed, they can both do the same things, they may do them in a different way, but neither are wrong.

Also, OP, neurodiverse kids tend to have an emotional age about two thirds of their age-peers, so she may be feeling very 'left behind' as well as different to her peers right now.

Regarding a diagnosis preventing you from entering certain jobs, does anyone know if people with autism are able to enter the medical profession?

So much helpful stuff there, thank you all so much. @fightingsleep @Ridley10 the Libby Scott books look good but having read a sample on Amazon, I worry that they will be too young for DD, who has always been a voracious reader (and obsessive writer) and reads far beyond her age. @BlankTimes that is interesting about emotional age – DD is 13 but looks 15 or 16, and is emotionally very mature, I'd say, much more than some of her friends of the same age.

@unicormb and @BlankTimes I love the operating system analogy, that is very clever and (I think) relatable and unjudgemental, just a very clear way of saying different people are wired differently. I think I will put this and other similar analogies forward.

@Ridley10 you're right I think about it being so hard to be different as a teenager - it's odd because in some ways DD doesn't give a hoot what other people think (her form tutor in year 7 said he liked the fact that she had zero interest in trying to get in with/impress the cool crowd) but in others it obviously does matter.

@ArseInTheCoOpWindow yes I am inclined to wait and not push for now. But waiting another 2 or 3 years just doesn't seem feasible right now. I feel like she needs recognition/help much sooner than that.

Also, I had a long discussion with a friend my age (early 40s) recently who is certain she has autism (though hasn't been diagnosed) and so many of the things she felt and experienced as a teenager mirror my DD. She is a happy, healthy, 'successful' adult and I wonder if it might be a good idea to get DD chatting with her somehow. DD really likes her (think she's 'cool' - and she is!) and I just thought that might help to have an adult that she likes and respects be able to tell her she knows how it feels - like, really knows, as opposed to an adult that doesn't have autism - and that life will get better and easier and there is happiness to be found.

@LaMigraine

I’d get her in the list and then discuss it. It’s 22 months near me.

l actually took a stand with Dd and told her she was having one whether she liked it or not. It was horrible and hard. But the bribery paid off.