DD, 14 (15 this month) thinks she's on the spectrum for autism

[sharonruth1982]

My DD, almost 15, thinks that she might have autism or aspergers. She's done a lot of research and noticed that she exhibits many traits. While I think she does display a lot of traits of ASD, I just don't think she has autism and she's just eccentric.

I've told her this, and now she's worried that, if she goes to a doctor to see if she could get a diagnosis, she'd just get told she doesn't have it and she'd embarrass herself and seem like an 'annoying hypochondriac' and 'an attention-seeker trying to be quirky'.

Just to clarify, I wouldn't love DD any less if she did get diagnosed.

Any thoughts/advice??

If I google something I can easily give myself symptoms.

I wouldn’t encourage her to go after a diagnosis unless it’s something really affecting her day to day life and that she needs extra support for.

I think unless you've noticed traits from a very young age and its affecting her day to day its unlikely . Can you think back to when she was young? What was her behaviour like? My dd was diagnosed age 16. Even from age 2 we noticed she behaved differently from other children. She stimmed, had meltdowns, hated change - her behaviour affected the family's day to day lives. She isn't eccentric or quirky or any other autistic stereotype

I think the people best qualified to judge are the professionals who have actually studied this stuff. why on earth would it be embarrassing to investigate this possibility and find that it isn't the answer? there is no negative consequence to looking into this, even if she doesn't have asd.

I first suspected I might have asd when I was a teen but I didn't pursue it then as I understood there was no "cure" and I didn't see the value of having a medicalised label for my weirdnesses. (yes I already had "eccentric"). I did finally get a diagnosis in my early 40s and tbh I wish I had pursued it sooner. there have been various crisis points in my 20s and 30s where it's clear in retrospect that I was more vulnerable and in need of additional support due to my situation as having asd, which I didn't get due to being undiagnosed at the time.

you don't know what situations life will throw your dd into over the coming decades. if she has asd she will find that having a diagnosis will help her get through those situations with fewer scars and traumas than facing them without a diagnosis. if she doesn't then there is no harm done by checking it out

@moomoogalicious I don't think she started exhibiting any traits until around high school. When she was little, she was pretty normal, but she did have very particular interests. For a few years when she was younger, she was obsessed with dolphins, and then, when she was 9, she became obsessed with the show Friends (and constantly beats me at Friends Trivial Pursuit aha). She's also always had a good memory, and she's always been really reserved around family members aside from me, her dad, her older brother and her grandma. Even now, she struggles interacting with her aunties and cousins, even the ones she's seen almost every weekend since she was little.

In year 7, she struggled to adjust to the change, but now she's doing well. But, by year 8, she was having frequent panic attacks and got overwhelmed by practical lessons (PE, DT and in practicals during science). She also started to get new friends, but it was thanks to her life-long best friend who often helps her with those sorts of things. Day to day, her traits can affect her, such as when she gets annoyed when the TV schedule's changed, or when she's reluctant to do the washing up because she has an issue with dishwater, crumbs and food-related filth.

This might make me seem ignorant, but she also demonstrates a little lack of empathy at times. She's, generally, pretty empathetic, but, for example, we were watching the Voice Kids, and then a mother started crying because her daughter got through, and then DD asked "Why's she crying?". I told her "She's happy her daughter's gotten through.". She responded with (paraphrased) "So? Why do people cry when they're overjoyed? It's ridiculous.". I'd like to say that she's actually very clever and perceptive, even if she doesn't always understand other people all that well.

Also, she'll often ramble to me or, before the pandemic, her best friend I previously mentioned about the show she's watched (and neither of us have) or a crime vaguely related to something we've said (she's fascinated by true crime), and she won't notice if either of us are uninterested.

She also has issues communicating at times. A lot of the time, she stutters (though she doesn't have a proper speech impediment) and, a lot worse than most people, struggles to speak. By that, I mean she'll ask me to get her a drink, and then, when she can't finish the sentence, she'll do a drinking gesture or just point to her cup.

Aspergers/ASD is a social communication disorder. That is the main symptom. It can take 2-3 years to get diagnoses through the NHS, it's not easy private is fast but expensive. Girls need careful diagnosis as they mask it better. A diagnosis is very worthwhile for most. I wouldn't dismiss it.

Agree with PP. It's great that's she's so open and honest with you, I'd support her. Would school be a way of getting some guidance?

@sharonruth1982 there is clearly something going on so whats the harm in investigating? It might not be autism but could be something else? I would go to the GP - your dd is asking you for help

What is the harm in her getting it investigated?

Well the further details in your second post make it seem extremely likely that she has ASD in my view, but I am not a professional. A proper assessment is the only thing that will provide answers. ASD is massively under diagnosed in girls because it is extremely common for girls with ASD to carefully observe and mimic "normal" behaviour a lot of the time, with some more freely-chosen behaviour when they feel secure enough to do so (which may be considered "eccentric") such that they "pass" for neurotypical to the untrained eye but noone understands how much stress and hard work it is to maintain such a facade, and eventually one begins to crack under the strain. Please don't dismiss this. Even if it isn't ASD she clearly needs some answers.

I think you really need to encourage her to investigate it. Why did you discourage her from looking into it? Even if she is not diagnosed with Autism or ASD, it sounds like there are definitely behaviours there she would benefit with support for. She won't necessarily be laughed out of the room. They may be able to recognise other issues like anxiety disorder etc. Meditation is also not the first option. Various therapies may be available to her.

My eldest is beginning the assessment process now. He is 7. I honestly don't know if he has Autism, ASD or ADHD or everything. I'm not an expert. I don't want to pigeonhole him, label him or over medicate him when he doesn't need it. But what I have found already is just by reading up on the subject and the behaviours of each, I already feel like we have a much better understanding of our son's behaviour and have found positive ways of managing it.

What I am also realising is I also fit a lot of the characteristics. My DM clearly has mental health problems/possibly some form of ASD and I never really made the connection until now that I could be the same. It has also helped me be a lot kinder to myself and accept my own limitations. I've always struggled with social situations, anxiety, lots of people etc. I always just thought there was something wrong with me I could fix myself with enough hard work.

Encourage your DC to seek out a diagnosis and support her in the process.

Be aware that she will have learnt to cover up a lot of behaviours that you might not even be aware of in an attempt to fit it.

Your more lengthy post describing her presentation also makes me think there’s a good chance she’s on the spectrum, and I am a professional in this field - I work on an NHS diagnostic team.

@CountessFrog Out of curiosity, if you know the answer, what is the diagnosis process like?

Well it depends where you live and whether you mean NHS or private.

I honestly think it’s a lottery. She should have a robust developmental history (Taken from you) and an ADOS assessment (structured activities designed to elicit particular communicative behaviours).

It can be done for free on the nhs but waiting times vary, and they will be longer now. In some areas it can drag on for months, some donut quickly. Privately it can be done in a day, with results soon afterwards. Hope that’s helpful.

I was about your daughters age when I realised I was likely on the spectrum, and for the exact same reasons she had, I've never sought a diagnosis. Reading what you say about her reminds me a lot of myself. I didn't dare talk to my mother about it though, so it's great that she is able to be open with you about this, and I would urge you to be on her side with this and seek support and a professional opinion.

Over a decade on for me, and it's even more obvious to me that I am on the spectrum, but I feel as an adult no one will take me seriously and since I've managed okay, a diagnosis doesn't really matter. But I wish I'd had one at her age. It's also worth pointing out that autism frequently presents very differently in girls, which is why girls are so underdiagnosed. The stereotypical symptoms are often hidden, different, or masked, but I would trust your daughter in that she knows herself better than even you do.

No donuts. There won’t be any donuts. Maybe nice biscuits if you go private!

(And owl eyes is right)

There may be things you aren’t even aware of. Even when my son was diagnosed nothing clicked. When my daughter was diagnosed it finally clicked that a lot of things I did as a child (a lot of which my parents weren’t aware of) fit the ASD boxes. I never considered any of it to be anything unusual until I looked at it in hindsight.

I think since your dd is asking for help then you need to do something.
However in my area the gp would refuse to refer as that's not process in this area.
I'd speak to the senco at school in the first instance they'll know local protocol and also have an idea of what your dd is like at school. The senco at our school says girls are not usually diagnosed till they are y11 in her school as the traits come out later.
Ds1 had traits from toddler age and even his behaviour from birth was not neuro typical in hind sight.
Dd1 who is likely asd didn't show signs till year 5 and very different to ds1 signs.

My ds is a year older.

He has asd.

He sounds similar to your dd in description.

A diagnosis doesn't change anything. But it opens fires for the right support, protection under equality act.

But most importantly for my ds an identity.

He's is weird, quirky or eccentric which can be used to other people or even as a veiled insult.

He's autistic - he's someone - he's proud of it. And he knows his differences are something he can't help rather than because there's something wrong with him.

Support your dd to contact the GP. I'd also suggest she goes to pastoral support in school and ask them for support too as they can refer to Camhs.