My DD 15, thinks she is autistic. What do I do next?

[Knittinganewlife]

My DD15, has handed me a long hand-written letter explaining to me how she thinks she is autistic. She has detailed a whole range of symptoms which she has self-identified. From having very strong emotions, avoiding eye-contact, not understanding sarcasm, being sensitive to loud noises or bright lights , struggling with changes in routine, using fidget toys to calm herself when anxious. The list goes on.
I've spoken to her and told her how glad I am that she has shared all this with me.
But I'm struggling to know what to do to help her. Part of my struggle is that her letter felt to me like a reprise of lots of internet memes and tik-tok videos. AIBU to feel a bit sceptical? My DD is generally a very level headed and straight forward girl. But I do wonder if her worries are really just teenage, growing up, pretty normal adolescent issues.
I want to take her seriously, especially as it has clearly taken a lot to for her to share her worries with me. I have no issue with autism or her possibly being on the spectrum But I worry that it will be too easy to just be an echo chamber and not challenge her on this.
What to do next? Nothing or something!?

Brave girl. I suspect she must have been feeling like this for a while and is looking to you for help, support and answers.

What does she want to do? If she wants to explore a diagnosis you can speak to the SENCO at school or see your GP or both. Long waiting lists.

Be careful what you access online for information but the National Autistic Society website is a good starting point.

HI. My daughter did the same (except via email), but with her it came in the context of being an explanation of why she had developed severe anorexia and why she self-harms - the starvation numbs the emotions, and a high proportion of anorexics are also autistic - it can become an autistic special interest/obsession. Really, if she has shared it, I'd try to get an referral for assessment as soon as possible - the worst that can happen is that they say she isn't autistic, and if she is, she can get help. I wish I had known what my DD was going through, so I could have taken steps which might have prevented her from going down this path. There's a brilliant video here, which might chime with you:

Had you had any concerns yourself about her behaviour or development? Particularly under the age of 3. If not I would reassure her that everyone is different and a lot of the ‘signs of autism’ are things that can just be aspects of your personality and when reading things on the internet you could convince yourself you have anything. For eg the ‘special interests’. Most people have hobbies they are passionate about. Whereas with asd it’s more likely these hobbies would be spoken about extremely regularly and without consideration if the listener is interested or asking about their interests.
If you also have concerns about development and/or your child isn’t reassured then you could book an appt to speak to your gp if she wanted to.

I thought the same when my son told me he had ADHD. He also watches a lot of tiktok. I was initially sceptical too but he was right. He's also autistic it turns out. If you can pay for a private assessment that will mean she can get a diagnosis before she becomes an adult. You'll both learn a lot about autism and yourselves.

What you haven't said is whether you have seen any of those signs in your DD up to now?

I really, really would advise against saying this.

When I was diagnosed with autism at the age of 38, the assessor said ‘if someone has researched autism and feels that they’re autistic, they probably are’.

Take her seriously, OP - your hunch is right. I wouldn’t see your role as challenging anything she is saying. Just support her to explore it, as you would with any other feature of her identity? What does she want next, does she want an assessment? Does she feel that would help her? Does she feel she needs to make adjustments to anything she is doing, sensory needs etc? Just listen, be interested in her experience and let her come to her own conclusions? Read some books about female autism, be interested in which parts she identifies with and which experiences resonate? Whether she’s autistic or not, you’ll learn a lot about her and she about herself, there’s no negative side to doing that.

and if she did ‘incorrectly’ identify herself as autistic, what’s the harm there? She’d be identifying things that she finds helpful to navigate life, that’s all, which is surely a positive for anyone?

Don't ignore the letter, whether your daughter is autistic or not, it sounds like she is struggling. Talk to the school SENCO and your GP about a referral for a diagnosis. The way to help her is to listen to her rather than challenge her genuine concerns, that helps nobody and will harm the trust between you.

Why are you so sceptical? Are the things your daughter listed not an accurate description of her? The things you listed are not typical teenage issues, even your description of her as very level headed and straight forward could indicate autism. I noticed you do use the term 'self-identified' rather than identified which makes me wonder whether there might be a bit of subconscious Daily Mail 'everybody has autism now-a-days' ableism here...

Whether the op had concerns about her childs development before the age of 3 is an important detail as they won’t meet the criteria for a diagnosis if she didn’t.
I have one child with (diagnosed) asd and one without. My nt child tells me that self diagnosing asd/adhd/x mental health condition is very much the new thing and there are lots of ‘self screening’ videos on Tik Tok from people with no medical knowledge whatsoever.
If the child wants to visit their gp I would absolutely support that but it may be that they just want reassurance.

I understand there’s a lot of social media driven self diagnosis. And a weird kind of kudos surrounding having a “disability” and being marginalised.

But on the other hand, no late diagnosed ND person gets diagnosed without self-diagnosing first.

There’s a few online screening tests you can ask her to do. See how she scores and take the results to the GP.

https://embrace-autism.com/raads-r/
https://embrace-autism.com/autism-spectrum-quotient/

NHS waiting lists are really long, so there’s no harm in getting on the list (if the GP agrees to refer). If your daughter still wants to be assessed when the appointment arrives - let her.

Think of it this way - no one gets diagnosed by mistake. So you aren’t risking anything if you agree to go on the diagnosis pathway.

Does what she has written resonate with her? A professional assessment based on what she has been identified would be helpful.

With you not with her

Not really true, my children have autism diagnoses and I only had concerns about one of them before the age of 3. I am diagnosed autistic and my mother had no concerns about me until I was a teen. That is only one aspect they look at.

How would you reassure a child who has or believes they have many symptoms of autism? Telling them everyone does that is usually the sign of an undiagnosed parent in my experience!

M ASD Dd has no special interests. She’s still ASD though.

Often the features of development that were indicative of autism are only obvious retrospectively and are often elicited in a specialist assessment when a parent hadn’t thought anything of it at the time.

signs can be subtle, but it’s the overall picture that adds up iyswim.

For example, one of mine walked on tiptoes. Used to rub head on carpet. Said ‘you’ instead of ‘I’. Slightly late in motor development but nothing major. Scared of hand dryers. I didn’t have concerns about autism at the time, but these things were all picked up at assessment.

Another of mine presented as very shy, but language development and physical milestones all fine.

Another didn’t speak much until the age of two. Played very independently and just sat on my knee at birthday parties. Resistant to change.

All autistic. At the time, just toddlers.

This. I was diagnosed at 41. My mum won't accept it and thinks labels aren't helpful.

Having a diagnosis has made my life make sense. Christine McGuiness had a really good documentary on bbc recently and Chris Packham, worth a look to understand from her POV

Absolutely and if the op is looking back now and seeing signs then that’s different.
I can only go on what my child’s very experienced paed told me which was that as a developmental condition which people are born with - signs before 3 - noted by parents or school/childcare setting inc retrospectively - are necessary for diagnosis. The only exception, they said, was when diagnosing adults who’s parents were not in contact/had passed away and school not able to be contacted.
The videos I have seen on TiK Tok are about as specific as a horoscope - do you feel you need to decompress after a stressful day? Do you dislike excessively loud environments? Do you notice small details? Then you might have autism. I think these things and lots of other signs could apply to the majority of people. If my child had watched videos like this and family, school etc had no concerns I would absolutely reassure them it was unlikely imo but take them to the gp if they wanted to go. There are lots of other conditions that could cause similar symptoms and teenage hormones can also cause a lot of problems so if they want help then you absolutely help them.

@Chachachachachachacha Autism is a lifelong developmental disorder, that is true, but it is not necessarily apparent at the age of 3 especially to somebody who is unfamiliar with autism and even to those who are! That's why they carefully take you through the history and I'm sure you've had a few lightbulb moments after your child was diagnosed.

I'm sure the very experienced paediatrician, two very experienced clinical child psychologists, the speech therapist, two not quite so experienced clinical child psychologists, the very experienced clinical (adult) psychologist and the other (adult) psychologists who were involved in the 4 diagnoses I have attended might have known their stuff too.

Do consider, just because there is poor information out there it doesn't mean there isn't good information too. And if she does have autism she doesn't need to be reassured, she will probably feeling a massive sense of relief!

My daughter was diagnosed at 9, and although I provided a detailed history of behaviours going back to babyhood (that I’m not sure the paediatrician ever read 🤣) there was zero emphasis on proving that autistic traits were apparent before age 3.

A good response would be “thank you for sharing this with me , I’m so glad that you felt you could. I would love to help you to explore this further . Can we talk to the GP?
You can talk to me about anything .

Please believe her. My mum didn't and I didn't get a diagnosis until I was 32 🤦🏻‍♀️

Thankyou all, for your responses. It's really helped confirm for me that I will continue to absolutely take my DDs concerns seriously, but also that I will be lead by her and what she wants to do next.
I've never had even the slightest suspicion about her and her development. She has never shown signs of any autistic traits; and working as a secondary school teacher, I do have a reasonable awareness (albeit obviously not first hand as a parent) of the range of ways in which children on the autism spectrum can present in a mainstream school.
But I will keep listening to her, and offer to get her assessed if that's the route she wants to follow. As clearly, she's the one feeling these worries and not me.
Thanks again everyone. I really appreciate you all sharing your experiences and thoughts with me.