If your DD was diagnosed with autism as a teenager...

[NKffff]

If your DD was diagnosed with autism as a teenager, then what were the first signs that you noticed and around what age?

Dd has always been a little bit 'quirky' for want of a better word, but I wouldn't have said she was autistic, probably because I'm used to autistic children with high support needs.

Recently her counsellor suggested she might be autistic as she's quite anxious and rigid in her thinking and has difficulties with her emotions. I can see what the counsellor means and DD is certainly quite eccentric now, e.g. talking at length about her interests whether the listener is interested or not.

I think she's a pretty amazing young person and a diagnosis is not something I'd pursue now. However, I am wondering if we missed/ misinterpreted her behaviour when she was younger and wondered what others saw in their daughters that pointed to autism.

Mine isnt quite a teen (about to turn 12) but sounds very similar to yours & has been diagnosed this year. Most people wouldnt have any idea & I've swayed between 'must be' and 'definitely isnt' for years. She has friends, makes plenty of eye contact with people she knows & is a 'top set but not the most able' type of child for everything at school.

Its hard to identify the exact things but I first wondered when she was a toddler - she was a frustrated independant perfectionist even then & would get cross if she couldn't do what she was trying to to her satisfaction (usually something she'd seen me do like make the bed) - looking back she never really did imaginary play it was always acting out real life. She needed a 'routine' for going to pre-school without a tantrum, and would freeze like a rabbit in headlights if approached by an unknown child at a park. By reception age she was an extremely good talker with a huge vocab, had an exceptional memory/eye for detail (pointing out continuity errors with storybooks), she also started showing some sensory issues to clothing & noise. Despite being quite boistrous, loud etc she was also incrediby sensitive to anticipating mild peril & would refuse to watch quite a few age appropriate cartoons/films. Tiptoe walking (often but not always)

Now she has very intense interests but in fairly mainstream things, gets frustrated when people arent interested in listening to her talk about them (doesnt recognise any 'warning signs'until they walk away or directly ask her to stop), has friends but sometimes finds social interaction tricky, struggles with regulating emotions - mostly saves up & explodes at home later, still has some sensory issues, is still somewhat perfectionist - meltdowns are usually over making mistakes, or being generally overwhelmed. She has been able to articulate that she thinks differently to others her age & sometimes this upsets her.

I decided to get her assessed/diagnosed having read how challenging secondary school could be for undiagnosed ASD girls & hearing/reading some reflections of both men&women who werent diagnosed until adulthood. So many of them felt it would have helped them to understand themselves when they were younger.

The anxiety and rigid thinking is exactly why DDs CAHMS councillor has suggested we go for assessment for autism.
DD struggles with loud noises and busy environments etc.

Its strange for me I have worked in education so I’ve known lots of children with autism. Obviously presenting in more typical ways though. I’ve never had any inkling before that this was a possibility. It’s thrown me slightly as i never expected it.

Thanks @Blympette and @JubileeTrifle
I've also worked with autistic children and although autism occasionally has crossed my mind over the years, it's becoming more and more apparent now that she's a bit different. She is also very bright academically so I often put her quirkiness down to that. When our counsellor mentioned it, however, it did throw me even though it wasn't exactly a surprise.

As a young child her play was much more around organising and arranging toys than actual role play but not so much that it affected her experience of nursery. She had an extremely advanced vocab for her age and quite severe separation anxiety.

I can't really think of much else, but I've met so many parents that say 'no that area/ issue is not a problem, I do that / don't like that, it seems normal to me!' So when DD struggles with loud noises and doesn't like busy places, it's not so much an issue for us because I hate all that as well! That's all normal to me. She does pace around a lot, that does drive me crazy, I have to ask her to stop.

She seems to have friends, often quirky people like herself. But the anxiety is really starting to affect her, hence the private counseling.

Separation anxiety is a big problem for us just now. Initially they were blaming it on lockdown but she was doing much better last year. Now she is impossible if I want to go anywhere, she likes to know I am about all the time.

The Autistic Girls Network has produced an excellent white paper on what an ‘internalised’ presentation of autism can look like - you might recognise some traits here Keeping it all Inside

Thanks @Kta7 that's really interesting. I see a lot of myself and my daughter in there. I found their FB page also very interesting.

My DD is also a bit younger, 12 in September.

She doesn't pick up on social cues quite often. Will interrupt. Will come across as rude or blunt- she is just very direct. Struggles with loud noise and busy places. Will only really have a conversation about a topic she's interested in and doesn't do small talk.

She is worse as she gets older- socks are an issue now though I don't remember them being such an issue when she was little (though I did find photos of her on a beach in coat etc and barefoot where her brothers both have their wellies on so maybe it was just that I didn't think it was unusual).

She has always hated school and always struggled to make and maintained friendships.

She is rigid and inflexible in her thoughts. For example she got confused by a game while swimming the other day and kicked her brother really hard because he hadn't explained the rules to her. He said there weren't really rules as such askënd she just started joining in so he assumed she knew them. I talked to her about what to do- ask the other children how to play, if you don't understand or they don't answer, ask an adult (I was about 10m away in the water) etc etc. She listens, she's really bright... and then says yeah, he still deserved to be kicked. You just can't reason with her if she thinks she's right.

And yet I still didn't think she was going to be diagnosed until it was actually given. She can seem so totally "normal" sometimes. We had people say 'she's not autistic!' more than once before her diagnosis.

Well things have become increasingly difficult here. We're seeing the eating disorders team next week.

We also have a referral for an autism assessment. We've filled out the referral forms and writing it all down it looks very obvious that she's got autistic traits now.

I'm still wondering what I missed when she was younger.

Does anyone else have any observations from their own daughters diagnosed as teens?

I would have never thought DD was autistic. Now as a teenager there is so much. She’s obsessed with routine and spends all day carrying around a blanket and a teddy. Can’t cope with noise or crowds or difficult situations. Finds other teenagers impossible. Limited diet. Doesn’t seem to need that much company, obsessed with her hobbies. Basically lives in her room. Can’t deal with change. Perfectionist.
But she’s clever and funny and interesting. Fine for days, even weeks and then has a major meltdown.

That sounds really hard for her @JubileeTrifle Did she have friends at primary school age? Have you got a referral for assessment?

DD does have friends, in fact they're really important to her. Mostly they are quirky like her. She does get upset and cry about surprising (surprising to me anyway) things but she doesn't 'melt down'.

I'm still trying to get my head around it all.

My daughter is 13 in September so a younger tween/nearly teen.

She stims much more obviously now. She paces while clearly in her own world, can't cope without the trampoline and will bounce in all weathers (brushing snow off it in winter!). She sucks her thumb a LOT (and has increasingly from age 3), and twiddles her hair. She didn't used to pace until maybe age 10 or 11?? Maybe 11?

As a very young child she didn't seem to have any separation anxiety, but as she got older it got worse. She would always ask if a party was 'a drop off party' straight away and be far more wary if it was (though might still have gone)
When younger she did Brownies and Pony Club and after school craft club.

She has always been very direct and so comes across as rude. This is more obvious now she's older and very tall and so looks even older than she is.

She is more anxious about busy places now.

She hasn't been to school in 16 months now after hitting crisis there in Y6 but was always very capable academically, top third of the class for literacy and just about okay for maths, fine with everything else. She has been diagnosed with suspected school trauma and school phobia now.

She's always struggled with friendships and played with younger children at school. She does have a kind-of new friend now who's also diagnosed autistic and has always had friends at school and still has 3 good friends (she's also been out of school a similar amount of time to my DD and about the same age, just 3 months younger I think).

She isn't shy at all, and will talk to anyone (which is a worry, she'd consider anyone with a dog totally safe to talk to and share any information with for example). This isn't a current issue due to the difficulties getting out of the house which have been ongoing since she hit crisis 16 months ago. Now she rarely goes out, and fir very specific things- riding lessons once a week and equine learning twice a week is usually it. If she does agree to come out she would appear fine in public usually and is a professional-level masker.

If she starts to get anxious it will come out as anger/aggression or increasing need for control. We are wondering about a PDA profile of autism.

Very limited diet but eats and seeks sugar. She's eaten eg a whole block of fondant icing she found in the cupboard secretly. I think this is more a dopamine seeking ADHD thing though.

She was diagnosed autistic aged 10 after a 2 year wait on the NHS. She is currently mid ADHD assessment and we'd be surprised if she wasn't diagnosed (as would be last primary school, family support worker and psychotherapist). And yet some days I still get massive imposter syndrome as she can seem so "normal" to me.

Sorry to hear your DD is struggling so much.

@NKffff yes had friends in primary and into first year of secondary.
has friends but doesn’t want to see them, but is upset about losing them. It’s the hardest thing to deal with. She doesn’t even contact them
outside seeing them. Then is confused why they aren’t close. She has said before she only needs me, she doesnt though.
we are awaiting assessment, appointment was cancelled though. She only goes into school for
1 to 1 sessions which are sparse.

I meant to say- we do have meltdowns here, I think.
For us I'd say it's shouting/screaming/crying, being totally out of control provoked by anxiety, loss of control or overwhelm/sensory overwhelm. If overwhelmed DD might say her head feels "hot." Also when things were awful we had hitting her head into a wall/kitchen counter/bed head etc. Touch wood, this hitting her head has stopped, for now at least, not seen it in a few months. She will hit, punch or shove us, immediate family, in a meltdown too.

I've read my DD things about meltdowns and she doesn't always identify with them though. I think she does remember them. She almost definitely has alexithymia though and maybe that affects how she sees them? Don't know!

Hello,
Hope that this thread is still active. Can I join you?
I am coming to the realisation that my dd may also be asd. We have had a long history of problems with managing her personal hygiene....does not seem to grow out of it as well as binge eating which has got progressively worse. I think I have been in denial waiting for her to outgrow these habits until it is staring me in the face and my husband is insistent there is something wrong. Here are the things which I feel might lead me to think she needs an assessment.....
Thumb sucks and twiddles hair ( still at 14) although only at home.
Hige anxiety over things like catching a bus/ walking somewhere different.
Personal hygiene- needs lots of prompting and quite happy to sit her room in revolting mess ( dirty underwear, sanitary towels etc).
Absolutely cannot tidy her room - becomes very overwhelmed and just doesn't know how to start. It seems like laziness but I feel she lacks the skills.
Gastro issues from a young age. Constipation, soiling and now IBS.
Binge eating and secret eating- recently has issues with eating in front of peers so brings her lunch home and eats in her bedroom.
Can be rigid thinking and recently argumentative- unable to see someone else's perspective.
Spends hours in her bedroom- very focused on drawing, artwork particular things.
Gets very overwhelmed and can have big emotional outbursts over small things.
Can be very rigid with routines and ways of doing things..e.g bought her a light alarm clock but insisted that she needed her mobile because she has to wake up that way. Almost tearful over this.
Worrier - becomes very stressed about school.

Anyone notice the same in their dd...? I think it has taken years to see all the small details but put together it seems obvious. I had no idea when she was younger. She was always really quiet and shy. A few friendships issues around 9-10. Struggled hugely with dance- terrible coordination and 'lack of performance' which looked like lethargy. Hated music groups as a toddler and still doesn't really connect with music much now.

Always incredibly creative and imaginative with ideas for models, pictures, drawing. Loved to position small world, dolls etc. Did used to role play and pretend.

Also I noticed someone mentioned the sugar....she definitely craves this. I find spoonfuls of icing sugar that she has created a mix with. Eats cocoa powder and mixes her own butter/ sugar together

Hi @dinkybella77!
Some of those are autistic traits, some I feel are pretty ADHD. There's lots of crossover though.

My DD is now 13, and some of what you say is absolutely her. Sitting in a revolting mess, not knowing where to start tidying her room, personal hygiene especially around periods, very rigid about how she does things (but won't follow routines I try to set to help) eg listens to songs and audio books via Alexa only, won't use borrowbox only audible, sucks thumb and twiddle hair a lot (anywhere). She also secretly eats, craves sugar. Will find and eat a whole block of fondant icing for example. Has special interests. Hers is currently tropical fish/fish.

She has never had a proper friend and is incredibly isolated right now from peers (doesn't go out much at all, 18+ months out of school).

She also paces, bounces all the time in all weathers in a very repetitive way (she's always had repetitive behaviours, from age 1, but they've changed over the years) and her social communication differences are much more obvious now she's older. Her social anxiety and anxiety have got worse as she's got older (hence crashing out of school with huge anxiety and EBSA- emotionally based school avoidance- in Y6 of a small primary)

Never been quiet and shy- but was also diagnosed ADHD combined type just before she turned 13. She was diagnosed autistic aged 10/Y5.

Did you read the Autistic Girls Network White paper linked above? Well worth a read.

And if you are looking at an NHS assessment, well worth getting on a waiting list as they are LONG.

My DD's diagnoses are NHS and we've waited over 4 years in total for them.

Thanks so much for your reply. I feel we are very much at the beginning of our journey. I had sought help via CAHMS eating disorder team for her binge eating but hadn't connected it to asd or adhd. CAHMs did do lots of questionnaires with her but she didn't flag. I think she shut down a lot and so they didn't get a full picture. 6 months on she is discharged but skipping meals again and binge wating. Interestingly my sister is adhd ( adult diagnosis recently).
I think I should start the ball rolling with a diagnosis. Should I go via GP ?

@dinkybella77 It definitely sounds like she needs assessment. I'd recommend you start soon if you're going to. The process is incredibly long winded. We were referred in March and haven't had our initial screening pack looked at yet (I was told today that can take 2 years, then they go on waiting list for assessment!) My dd signs were really exacerbated during mocks and GCSEs and now struggling at A level.

It might be worth you starting a new thread so you get more responses.

Good luck.

The GP can refer but in our area a lot of GP referrals are rejected as they don't contain enough information/detail to progress the referral.

Schools referred both times for my DD (she moved primary for Y5/6 as she just couldn't face ever going back and the distress was so evident and her panic at the thought of returning so we sought a different school for more support. First primary referred for autism, second for ADHD ). They tend to be better at putting together enough evidence to get through the screening process and onto the waiting lists. For ADHD in particular they look for evidence in more than one setting (I.e home and school) which the GP is unlikely to be able to provide.

Did CAMHS do questionnaires for neurodevelopmental differences like autism and ADHD?

It can be such a pain though. My DD was referred initially at 7 and it was sent to the CAMHS/ADHD team (who in our area are separate to the autism assessment team) and the letter basically said sounds more like autism, this will be sent on (except of course it wasn't, so by the time I chased it up 6 months later we had to start again and resend it and lost ANOTHER 6 months) and yet she has both diagnoses now.
I wish they'd assess for both when assessing for autism- it would make so much sense!

I hope you get the referral done quickly.

In our area we got the GP to refer and then we filled out a form, school had to do one as well. They accepted our referral, and it's at least 2 years wait. There is a lot on your list to warrant a referral, I'd go back in your memory to think about her childhood as well. I found that quite hard, as like you, I didn't really realise how different she was at primary school. My DD was definitely quirky but secondary school was a crunch point. Just the sensory environment alone is a challenge.

The eating disorders team should be very aware of the crossover of eating disorders and autism, have you been discharged?