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?

Firstly if I see why do you need to label them one more time I am going to scream! Those saying that you do realise that parents that pursue a diagnosis for their children don't get autistic tattooed onto their children's forehead!

What a diagnosis gives you is legitimacy it's all fine saying that services are based on need but often the reality is very different and even with a diagnosis you have to fight for months to get anything.

A lot of you daughter's characteristics sound autistic out daughter is autistic and exhibits some of them.

Write a list and then write to a different GP laying out why you believe she needs referring doesn't matter if school don't support it.

Then I would stop thinking of her behavior as wrong not sure if you are doing this but it read like you are. If she doesn't like be hugged then her family needs to respect that boundary.

She sounds like she is in a hightened level of stress out DD got like that the first year of secondary because for some autistic children massive noisy schools are just completely overwhelming. We have now switched her to a small school and a lot of the OCD behaviours are reducing.

It must be awful for you and your DD to constantly be at this level of anxiety.

We she be open to some kind of therapy such as art, lego etc. Something she can do and enjoy while therapist talks to her. Call it time just for her. I wouldn't pursue a diagnosis if she is very against it. I would try to get her to understand a sense of self

If she's against it, then leave it for now. You can't force her but you've planted the seed and eventually she might decide she wants to be assessed. I think you need to talk about autism generally in a very positive way to her. Talk about all the famous autists in a positive way: Greta Thunberg, Eminem, Einstein...whoever she's into that is autistic. There are so many misconceptions around autism (eg that they have no empathy) so you need to start to talk about it in relation to other people in a positive way.

Sounds very similar to my own daughter, who is now 10 and diagnosed. Trust your instincts, I was told for years by school that she was fine, that I was seeing things, imagining things, that it was my parenting, now she’s clinically diagnosed they’ve gone a bit quiet. There are still people around us who “don’t believe” that she’s autistic. It’s a clinical diagnosis. Screw what other people think. Diagnosis has helped my daughter better understand herself and has given her answers as to why she’s always felt different and lacks a sense of belonging.

Also, ignore the PPs who say - "I do this and I'm not autistic". Most girls and women with autism spend their entire lives unaware and undiagnosed. My DM is a prime example. She's still in denial and yet she's textbook. People just don't understand autism and rarely think that they are themselves.

My son was diagnosed age nine after years of searching for answers. I first sought advice from his health visitor when he was abt 3 and was told he was spirited.
he missed all his milestones, didn’t really talk properly until he was five etc, you just know there is something not right whereas everyone else perceived him as naughty.

She sounds very like me dd1. The I can hear you breathing! I can hear you eating, dog obsession ... dd is autistic diagnosed at 2.5. Insomnia, intolerant vegetarian ... are you me????

The good news is it gets easier, dd is an adult now and life is fairly easy with her but mental health issues were a huge issue through her teens and she is under the psychiatric service now and on meds.

Look at something like the dbt neurodivergent workbook as a starting point, dd really rates it

Thank you for all the replies on here
I’m going to take her out this evening just the two of us for a walk and a hot chocolate and speak to her again
Just to answer a few points, of course if she is unable to sleep she’s very welcome to read, draw, play with toys etc but when we’ve allowed her to have the iPad she literally can’t switch off so then would be going to school after being up the entire night.
What was most difficult is that she won’t do it alone, she constantly wants to wake me so I know she’s still awake and “ bored “
Someone asked about other family members - she has a dad who is pretty quiet and not overly sociable.
He can find affection awkward too thinking about it, he wouldn’t make an affectionate gesture out of nowhere etc.
Grandparents are visited every few months on my side and I find that incredibly draining as does DD.
Nan in particular doesn’t get DD, struggles with the fact she only gives one or two word answers, no affection and never really looks like she’s having fun even if we are at a theme park for instance.
Nan will constantly ask if she’s having a good time which makes DD uncomfortable so I limit the time we spend with them TBH

To add, currently she is exceptionally AGAINST any kind of intervention.
She couldn’t believe it when older DD calmly announced she was in a few maths intervention groups at school before SATS ( she struggles very much academically in comparison to DD ) as thought it was so embarrassing, everyone must know etc, end of the world.

Have you/your gp considered melatonin for the sleep issues?
ds could go an hour or more trying to fall asleep, when apparently more than 15 mins is abnormal.
(The problem is getting him to take it if he doesn’t feel like going to sleep, but that’s another story)
we switch off screens 2 hours min before bedtime, do regulating exercise and activities and we have softer lights upstairs.
Baths before bed are a disaster in our house.

There might be something useful in those ideas - it’s quite individual what suits

No mention of melatonin as it happens in phases rather than constant
He did suggest using something after the last episode a few months ago when she had stayed up for 3 nights in a row because she thought she wouldn’t be able to fall asleep - so she didn’t try
After the Monday back at school after a weekend with no sleep, I told her I would have to speak to the teacher to let them know why she is so tired and that was enough for her to quickly go to sleep Monday night and there were no further issues until this week I’m regards to sleep

On the subject of her resistance to intervention - that’s not unusual and it’s something that is slowly coming to the forefront but probably not in time for this generation.

Something that has made a difference to us was using the SN access at Lego land and in the airports. We didn’t on the flight out or the first couple of days of our holiday (didn’t know) but the difference it made both to ds and the rest of the family was incredible. We got to skip queues (and I won’t apologise for this because he was unable to manage more than one queue a day and horribly overwhelmed and distressed. We only did about 6-8 rides with the pass before he needed to leave do it was still less than an NT child would manage) and it helped him in a way he absolutely needed but also gave him a lovely hero experience. It’s awful how often he feels bad or that he’s letting people down so getting to bring us along with him was a turnaround.

I’ve noticed that now he’s more confident at asking for accommodation in school. He’ll say “my mind works differently and …”
He doesn’t abuse it because he has a deep need to blend in. But yes starting to think about fairness for himself too.

melatonin has a very short effect. Ds takes it about 30 mins before sleep, so it’s something you could have on standby for the bad nights. She wouldn’t have to take it all the time.

my heart goes out to you because I recognise that steely strong will all too well.

you can have the best ideas in the world but getting your dc to try it is the sticking point!

Not sure if anyone else has mentioned OP as I didn't read all replies but your daughter's aversion to breathing and eating noises sounds like misophonia to me. I'm a sufferer and it's horrendous, especially at her age when being able to control the situations she's in is more difficult than for an adult. The miso can lead to all sorts of other MH issues and often goes hand in hand with OCD. Have a read up on misophonia - I think it's your DDs main issue coupled with being higher than average intelligence.

your daughter's aversion to breathing and eating noises sounds like misophonia to me

possible but it’s also a common thing with autistic people because they have sensory sensitivity.

I don't get this question. No one seems to say it about any other medical condition.

Could be that she’s autistic but I’d guess at ADHD first, and often having a mix of different things going on means it’s harder to work out.
Social awkwardness, lack of affection, lack of empathy and realising that people like different things, difficulty hearing people eat and breathe, obsessions, sleep difficulties, food issues, never being at fault and not wanting to be seen as different are all more indicative of ADHD, and OCD which frequently occur together.

That’s really odd as ADHD has never ever crossed my mind
My niece has ADHD and seems completely and utterly different to my DD
Mine has such a controlled level of focus which I didn’t think was one of the signs - as a teacher, a lack of focus is one of the biggest things we look for when referring for an ADHD diagnosis

Not one of these signs

Your daughter sounds similar to my son. He was diagnosed Autistic last year at 16.

My daughters school refused an assessment - she was level 9 in everything doing GCSEs early, straight 9 apart from her a levels (3 years early) all despite lock down learning. She was lead in the school play, house captain, doing a course in leadership gcse - mentoring. No behaviour issues. Ergo no problem.
I took in a checklist of traits for high functioning girls - she ticked every bloody box and they were like - oh ok. The assessment went in didn’t take long. I can email you the list of traits if you like - the group most likely to never be referred Is high functioning girls

ADHD is quite a complicated thing. It was obvious in two of ours from very young but had no idea with our eldest until he was 13 when he’d started secondary school and couldn’t cope with the extra demands. It’s not always the stereotype of a kid bouncing off walls and shouting out. It might be worth having a look at more inattentive ADHD rather than hyperactive/impulsive ADHD.
My niece has ADHD and sounds exactly like your daughter. I have ADHD and was very focused and academic at school - it’s common for girls to mask in order to fit in.

Many of what you describe match behaviours in my now 13 year old daughter who was diagnosed autistic when she was 10.

School always maintained she was fine and they saw no signs. Girls are master maskers.

As for the benefits, my daughter has benefitted massively from understanding herself and why she is not the same from her peers. She has researched autism and get's herself. Her self esteem has improved as a result.

Your GP is wrong. You only need school to 'see' issues for an ADHD diagnoses.

Remember as well that schools have a vested interest in not seeing SEN. If it doesn't exist it doesn't cost them.

Girls are massively undiagnosed if you feel she could be autistic then you should get it checked out. It will benefit her massively to know.

The key to a diagnosis of autism is that it must be present from early on. This is a good thing really as it makes it easier to analyse than the immediate experience which you do second guess yourself on.

the need for foods not to touch and pasta/bland preferences particularly is very common. What would she drink? It’s not so much that these are anything to do with the diagnostic criteria more that if you talk to parents of diagnosed autistic children they come up again and again.

It does sound a lot like my daughter with ASD, that said, I am not sure which parts relate to her autism, and which are part of her other qualities.

For example, not relating to peers and social awkwardness (as you described it) can also be a sign of a gifted child or the constant boredom being ADD (no H). Other things could be attributed to personality, control or anxiety (also common with giftedness). I think only a professional can tell you.

Wishing you and your DD lots of luck as you figure this out. I wonder if seeking help for her anxiety could be a easier entry point to seek diagnosis.