To wonder why nobody thinks my DD is autistic?

[Nobodylistens]

DD is 11.
She has always been quiet, intelligent and rather intolerant of peers her age.
At some points it came across rude - she got to about 6 and couldn’t see why kids her age were still running around dressed as fairies so would rather play alone or with one other child similar in nature.
As time has gone on, she has become more and more socially awkward - she hates any situations where she will have to talk to people she doesn’t know and refuses completely to attend holiday clubs for me to work but also won’t be left alone at home for any length of time in fear for someone breaking in ( we’ve never had a break in )
Shes not affectionate and tenses up completely if anyone shows her any affection and is clearly visibly uncomfortable; tears when nan tries to hug or kiss her goodbye ( we’ve had to tell nan to stop in no uncertain terms )
Shes now gone vegetarian which is fine but can’t accept others in the house are still eating meat and is visibly upset at meal times where meat is being served and asks to eat in her room alone so she doesn’t have to see it
She can’t hear people eat - she leaves the room if someone makes a noise whilst eating
She can’t share a room on holiday with her sister or me or dad as she can “ hear “ us breathing and gets frustrated that we can’t sleep with our mouths closed and no noise
Lack of empathy - a toddler fell over in front of us today and older DD ran over to pick her up; DD said she should have looked where she was going
Massive attachment to her dog, almost obsessed to the point she thinks she’s a human; talks to her, cuddles her, speaks about her the entire time we are away from home for any length of time

Lots more examples but feeling especially drained tonight as she has finally gone to bed after being convinced that the flies we saw on the dog walk might now be in her bedroom - she doesn’t want to sleep with me; says that’s weird at her age ( even though 13 year old DD sometimes does ) but sometimes just won’t / can’t sleep so sits up all night as I won’t let her have technology after 8pm so just repeatedly comes in to tell me she’s bored and can’t sleep but doesn’t actually want anything I can offer.

Im sure there’s something going on but nobody agrees.

anyone been here?

Appreciate autism is a spectrum but my direct experience of autism is much much stronger examples

So? That doesn’t even make sense. It’s a spectrum, not a linear one either. Autism affects different parts of the brain in different people so it presents in different ways in each individual.

A diagnosis of autism doesn’t ‘pigeonhole’ anyone unless those around them are ableist. It helps the individual and those around them understand any differences which require some adjustments to help navigate life in a less challenging way. Ignoring the specific needs of a child because you fear labels isn’t responsible or helpful.

DS2 is 11 and in Y7. He was diagnosed at through end of Y6 after I paid for a private assessment. It wasn’t horrifically expensive and I paid in stages so if after the first consultation nothing else was needed that was all I paid for.
Nobody believe me either. DS is sociable, made good eye contact and generally masked very well. However the effort that it took him to do that all day every day was huge. He couldn’t cope with change at all which was the main reason I went for a diagnosis as I thought he’d struggle at High School (he has been fine so far). He also shows no empathy. He is a talented footballer but if someone over he would literally just tell them to get up! He also couldn’t accept blame for anything, every time he did something wrong it was always someone else’s fault.
I go on and on about him but my point is just because someone seems autistic, doesn’t mean they are autistic. And likewise if someone seems NT, doesn’t mean they are!! I often look at DS and think maybe they made a mistake, you are just you with all your little quirks then suddenly he will do something and it’s so obvious.

Hey OP I've been here with a little girl (much younger) but similar behaviour. Nobody in our family listened they all thought I just couldn't manage her behaviour. My health visitor at the time did listen and made a referral to paediatrics after years of appointments and waiting she finally had her ADOS (observed assessment) and the score went way beyond cut off straight in to the middle of the score sheet, school forms were borderline/ something and nothing, parent interview on the other hand raised a lot of issues too. The skilled professionals assessing her during the observation picked up on the smaller traits others had missed, the speech being brought back to things she wanted to talk about, mirroring, restlessness (there were lots of points in the assessment).

For those wondering what benefit a diagnosis provides, I cannot underestimate in my daughter's case the impact it has had on her confidence, she now realises why she found certain things harder than her peers and she is proud to discuss her ASD (my daughter is only 6) there was also information regarding the impact of failing to appropriately diagnose girls and women with ASD and the link to depression and anxiety in adulthood (I have the research on my laptop I'll look it out when I get home if needed). I spent time wondering if I should let things go with my daughter, what difference did "labelling" make, well actually it isn't just fucking labelling it's her identity and she deserves to know about it.

I think it’s a good idea to explore why you want a diagnosis and what you think it will bring. You can certainly receive dla, significant support in school etc without diagnosis as these things are “needs” based rather than “diagnosis” based. For older autistics there are obvious benefits in the workplace etc. It’s certainly not the case that dx will solve things for everyone and nobody should be pushed into that path.

As far as “labels” go, a medical diagnosis is not a label, those are for luggage and usually tell you where you’re going or where you’ve come from.

My DS2 is the same, he needs to have something to watch to help him sleep, once we realised this it made things a lot easier at night. He goes to sleep when he needs to, he just regulates it himself and has done for years.

@Nobodylistens Apologies if this isn’t helpful, but have you tried talking to her teacher (ask for a meeting rather than trying to do this on parents night) and laid out some of your examples and then ask them to keep an eye on her and get back to you?

I’ve had to point out specific things to my ds’ teachers that aren’t an issue in terms of behaviour or learning for them but are indicators of struggles for ds. Teachers who are lovely and tolerant of diversity often don’t see things as problems, which is great for building an inclusive learning environment, but also means they can miss signs.

Girls and Autism: Educational, Family and Personal Perspectives
this is a very up to date book. See if your library can order it or maybe your senco has it?

No one thought my ds was autistic until one on his teachers went on an autism training day and just had an inkling about him. Even she wasn't sure though, and the other teachers didn't agree! As soon as it came up and I read up, a lot of things just made sense - and he was diagnosed in just 45 minutes by an NHS doctor who specialised in ASD.

Ignore people saying that they were just like this and they're not autistic - because if they haven't been assessed then they can't say that for sure either as they just might not realise! I was just like your dd too and only now that I have a ds with ASD do I expect I have ASD too as it generally runs in families and we are like two peas in a pod. I would also describe my ds as 'something going on', 'being a bit quirky/different' etc but he could easily have fallen under the radar as he is very clever and well behaved, I think that is often how very high functioning kids with ASD present and get over looked. (Please don't police my language here other posters as I'm not interested).

You know your daughter better than anyone, what i would do is write every single thing down that you can think of that could suggest ASD - go right back to when she was a baby/toddler, and keep adding to the list as you remember things. OCD can be comorbid with ASD, restricted eating (and even eating disorders, so worth being aware) are more common with ASD.

The big difficulties you have are that you dd is very resistant to being assessed and CAHMS if you have to go through them are often useless (we didn't thankfully) - not to mention the really long waiting time for assessment. I think your dd ticks a lot of boxes for ASD especially in the way girls present vs boys. I'm not really sure what to suggest though. I would keep reading up and writing things down - please read up on ASD and eating disorders because tbh that is where my biggest concerns would be for your dd. Good luck xxx

It’s like going back 15 years in time reading this, and it’s quite bizarre actually as my adult daughter and I were talking about it yesterday.

My daughter had/has many of the same “issues” as yours; total lack of empathy, misophonia, hates being touched or shown affection, all consuming obsessions, problems with food, and VERY good at masking at school.

We somehow got into conversation about why I obviously knew she was “weird” (her word not mine) yet never did anything about it. She’s obviously forgotten my endless battles with the school SENCO, the reams of paperwork I filled in, the arguments I had with her (idiot) HOY; just to get someone to take my concerns seriously. She’d also forgotten, like your daughter, that after I’d spent all this time she then refused any sort of assessment as she didn’t want to be stigmatised and stuck in the class with all the other “problem kids” (again, her words).

I honestly don’t know what, if any, difference having a diagnosis would have made. She suffered badly from anxiety and at one point probably an ED, but consistently refused to see a doctor or anyone else, so I’m not sure how we would have even gone about getting a diagnosis.

She’s still unempathic, hates noises (the dog licking his feet drives her to the verge of insanity), needs my help with things that make her anxious like talking on the phone, and doesn’t like affection - luckily her boyfriend doesn’t either 😂. But, she holds down a job and is doing a degree (OU - there’s no way she could have coped with a traditional university) and she’s in a healthy relationship.

She’s still unempathic

unlikely, it’s a common myth about autism. My DH & child have more empathy than any other people I know but express it very very differently and don’t see excessive displays of emotions helpful during difficult things.

We cross posted but yes I agree with you about ED. I don’t know if what my daughter had was strictly an eating disorder but she definitely displayed disordered eating and flatly refused to discuss it with anyone.

Oh I know that empathy or lack thereof isn’t a sign one way or the other. My point was only to show that my DD was uncannily similar to the OP’s.

OP Learn to think of it like a project manager. Take detailed notes, follow everything up with an email so there's a paper trail.

Attack it from all angles. Get books, for her. Demand GP referral. Email Senco. Book private assessment.

Then at least Your'll feel better about being proactive on all fronts.

My daughter is 8 but masks at school all day everyday! She's going through assessment but school still don't see it because she doesn't show it to them.this is not good for her mental health though as masking is exhausting and she explodes every school day evening!
Her speech and language therapist and occupational therapist see it loud and clear though so she does only mask in a school setting!

Because people still have very stereotypes ideas about asc and if you have a quiet child who masks they don't fit their picture.

If I had a quid for every time I was told I was worrying about nothing with my two who were eventually diagnosed at 10 at 12....

I knew from about 18 mths old with the 12 yo and at about 5 with the 10 yo.

She sounds a lot like me as a child. My mother still says I was difficult and challenging. I was later diagnosed with borderline personality disorder but strongly suspect I’m autistic as two of my dds have been officially diagnosed with autism.

I would go to the GP. They can refer you.

This sounds pretty similar to my DD growing up. She suffered from insomnia for most of her childhood, hated kid's clubs, sleepovers, preferred one or two friends, very attached to me, my mum, our cat, extremely self-contained, samey diet, lacked empathy at times (e.g. absolutely zero patience/ anger with people who are scared of dogs), often described by teachers as "quirky" and I did wonder if she was autistic for a while. As she became older (about 19 onwards) she developed an extraordinary insight into her own psyche and self-diagnosed anxiety. She then looked into self-management - mindfulness apps and visualisation helped with her insomnia, she became a prolific planner and explained to family members & friends that we needed to be on time for things we had planned etc or she would fall apart. She also went away to uni then got a public-facing job that she claimed helped with her social skills and confidence. She will always be very self-contained but she has become the most remarkable, organised (unlike me & her dad) and capable young woman and is an amazing mentor to her younger brother who now has diagnosed anxiety. And she miraculously now eats most foods.

If your daughter is against diagnosis then I think you should maybe respect that for now and accept that she might have a different personality type from the rest of your family. Ask her what might help with the things that she does see as problematic. One thing that helped my daughter when she was younger is that I would let her fall asleep to children's DVDs. It seemed to calm her mind. She had a quite the Disney collection as a teen and still returns to them now for some comfort watching.

Another interesting thing is that my DD has declared herself an extreme introvert - Susan Cain's book "Quiet" might also give you some insights into how to support your DD.

I'm not sure what the benefit would be of her having a diagnosis? It doesn't seem to be affecting her mental health from what you've said in your OP but her traits and quirks seem to be effecting you much more which I think is unusual in all honesty. All of those traits are things both me and my DH possess yet we're not diagnosed as autistic

I am going through the exact thing just now with my 12 year old daughter. You are not alone. She has been school refusing since she started high school in august as she finds the noise, crowds etc too overwhelming and it’s just too much for her to handle. She’s now on a reduced timetable to help her cope.
Like your daughter she has a lot of sensory issues, isn’t particularly in close friends and prefers to dip
in and out of friendships. She has always been ‘shy’ but now it’s like the scales have been removed from my eyes and all her wee quirks and ways are now pretty obviously related to something else. She is an expert at masking and then unravels at home. Very few people know about how she struggles. I feel like it all makes sense now really.
Her school are being helpful thankfully and they are arranging counselling and support for her and have said that if she does have ASD that will become clear in time and I do fully expect her to end up with a diagnosis. All I want is for her to be happy and supported and to get her education. It’s been very hard the last few months.
wishing you luck with your daughter.

Yeah OP this screams autism. I agree that you seem to be being fobbed off.

However, if your DD doesn't want to be assessed, I'm not sure what you can do! Solidarities.

Ask your GP exactly where in the criteria for referral there is a requirement for two sources of concern? Because that sounds like nonsense to me. He presumably wouldn't require two sources of verification to refer people for heart or lung problems, or indeed to refer adults with mental health problems. The sooner your daughter is referred, the better, not least because of the long CAMHS waiting lists.

Alternatively, can you arrange a private assessment? That might be the simplest way to cut through the problems. Do you have any medical expenses insurance that might cover it?

It's far too common for autistic children to cope, just about, in primary school but to have severe problems in secondary schools. OP would be very wise to pursue a diagnosis.

Benefits of diagnosis here were: 1. It saved our marriage. We couldn't understand why we were working so much harder than everyone else yet doing so badly; 2. School started to take making adjustments seriously; 3. Gave us access to more ideas and strategies; 4. Helps with secondary transfer -- at least we know now that's a risk point so we're being mega careful.

Our relationship with our DD is way better post diagnosis as we understand now a lot of the behaviour isn't deliberate.

OP - a good book is 10 Days to a Less Defiant Child. Lots of tips in there that might help with the anxiety at night time. We also got melatonin as DD found it almost impossible to fall asleep.

DH thinks he would be diagnosed now. Fortunately he was into STEM and went to Cambridge...found his tribe himself...

I'm baffled why she can't be reading at night if you don't want her to have tech (fair).