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?

@Nobodylistens just a little alarm bell ringing with that post. Is the vegetarianism a new thing? Has your DD lost any weight or suddenly become more intensely focused on fitness?

It's really common for eating disorders to manifest initially with a sudden switch to vegetarianism (especially if the vegetarian doesn't like vegetables) and an increased focus on fitness. Girls with ASD are much more likely to develop eating disorders.

There is a school of thought now, that eating disorders are partly genetic, partly physical, and partly psychological. That means that some people have a genetic tendency towards ED if the circumstances are right. It means that if a person with that tendency loses weight to a certain level, for example by being unwell, then their ED tendency is triggered. Once the weight loss occurs, the brain changes and they can't get themselves back out of it.

It may not be relevant at all, but there are many parents on the Teen Eating Disorders threads who have had this experience. Lots of them go on to find out their DDs have ASD.

I second the recommendation of the Autistic Girls Network - they have an excellent white paper that explains the ‘internal’ model of autism and there are several pages of bullet points that might help you articulate your thoughts to a professional, although you’ve given lots of good examples in your OP. If you’re on FB, there’s a great group called ‘Colouring outside the Lines’.

Depending on your location/funds for a private assessment, the Lorna Wing centre is supposed to be good at understanding how autism can present differently in girls. (I’m not sure what tool they use but apparently the DISCO tool is better at picking it up in some girls than the ADOS.)

Good luck OP

I get you @Nobodylistens . I feel exactly the same about my DD10, the older she’s getting the more socially awkward she is and I’m really worried about secondary school. School have no concerns, she ‘seems’ fine abs settled (yet has outbursts the minute she gets home).

It runs in the family too, she gives me even more reason to believe it. DSD24 is currently on the pathway for diagnosis, DSD21 is diagnosed ADHD, DS16 ADHD & Autism, DGD5 (from DSD) diagnosed Autism & pathway for ADHD at 8. All high functioning, DSD in particular has always managed to ‘change’ (or in reality mask) to fit her surroundings.

Apologies OP i haven't RTFT (too early) but she sounds just like my dds. Dd1 was diagnosed with autism aged 16, dd2 is currently being assessed privately as camhs is broken in my area.

And to the pp who asked about late talking and eye contact pls educate yourself

A label? Autism is not a label FFS

@Nobodylistens
She sounds like my child who at 13 has just had her diagnosis. Lots of similar traits. Your flies example and some one breaking in would definitely be a thing that would occur here-anxiety driven but irrational in many ways.

I paid for a private assessment didn't even both consulting the school as she masks so well they don't see it except social issues. NHS wait was 2years.

Happy to DM if helpful- I'm new to it but spent a long time hoping someone would suggest it to me so it wasn't my idea as it were. I wish I'd trusted my instincts better.

I fucking hate this question. It is said with an undertone of you don’t need a diagnosis.

I didn’t get one as a child, could have done with it to be honest-things would have made a lot more sense. But my boys, I got them a diagnosis because the school can’t argue with you then about things they need to put in place…I had them say so many times no to things that would have made my boys lives better and easier-because they weren’t diagnosed, as soon as they were they started putting things in place!

Your post describes my DD almost perfectly (except her obsession is cats rather than a dog). She did have some other more obvious symptoms as a younger child though which led to an early autism diagnosis. That early diagnosis meant we were able to access services like speech therapy and physio. At 8 she no longer gets any specific help but her diagnosis is useful in helping us to understand her and how she thinks.

Sounds just like my dd10, she was diagnosed at 9.

@Nobodylistens OP a lot of the behaviours you describe are spot on for my DS, who is diagnosed autistic, although I would say that your DDs behaviours are more extreme. But the lack of empathy, they hyperfocus, the lack of affection, the perceived rudeness, the intolerance for children his age etc we only got our DS assessed because it was having an effect on his school life and sleep. But being diagnosed (DS was about 9 and is 12 now) really helped him. Because he knows he is different from other children and this helped immensely, having an explanation. He has been much more settled and more confident since his diagnosis. And you're right girls do mask, and it is harder to tell, so there is no harm in getting get assessed.

Get her assessed. I got my asd diagnosis aged 50 and adhd 2 years later. I just thought I was shit at life. The relief that there were good reasons behind my difficulties was huge. Now I have reasonable adjustments and understanding at work and have reduced the things that make me anxious, my life is much easier.

Taking aside the fact that adult women are getting diagnosed now in their 40s (different times)... you only have to go on forums for parents of SEND children to see that many Autistic girls dont get diagnosed until teens (often following an mental health incident). You pretty much can't get the NHS to take you seriously as their waiting lists are years long so unless your child is in any form of crisis you'd pretty much need to forget getting a referral. Schools don't get it either. I know several teen girls who are likely Autistic. But I'm around a lot of Autistic people (so not armchair diagnosing).
You could get a private assessment. The Lorna Wing Centre specialises in diagnosing girls and uses DISCO as well as ADOS
(It took 6 years to diagnose my DS as he isnt 'classic' whatever that means!). If you think a diagnosis is needed then please pursue it. Having one for my DC has helped a lot.

Hi OP, girls mask at school and it sounds like you have a long list of behaviours that you are trying to manage at home. Your DD sounds like my DD. School never recognised an issue as she is well behaved at school and gets good grades. At home she can melt down over the smallest issues. Fortunately my GP never asked for any one else to back up my claim. I was able to say I think my child could benefit from an ASD assessment and I was put on the waiting list. If you really need school to back you could you go for a meeting with the Senco and ask for them to support you?

This is difficult as it could be autism or something else.
I wasn’t diagnosed until 23 despite myself being convinced I was autistic from about 11.. no one else could see it.
Even when I was diagnosed in the 6th year of vet school my lecturers were shocked as I “can always tell what the client is hoping to get out of consult” and “I can build a really good rapport” etc.

which is lovely but I also get into my car and burst into tears in relief every day after 9 ish hours consulting.

My DS masked extremely well through primary school. At 12, this unravelled. We self referred and paid for an assessment at Oxford Autism (smaller waiting list than others). School couldn't refer as they were not seeing the behaviours that we saw at home, but they believed us.

It has been a godsend to get the diagnosis. He is more settled in himself because he knows now why he feels and thinks differently to others.

He engaged with his part of the assessment (which was only short) because we explained that it could help him understand why he hates certain textures etc

Importantly, his school have accepted the private diagnosis and put subtle interventions in place for him. Crucial for upcoming GCSE years as it includes provision for a separate exam room and supervised rest breaks during exams, so he can re-set himself when he gets overly anxious. That's why it mattered for us to get an assessment.

Maybe have a look into ADHD as well? A lot of this sounds like me at that age as well (oh, how my other half laughs when I eat deconstructed sandwiches - try buddha bowls with your daughter, it’s a gamechanger having lots of separate elements in a bowl!). Hearing or feeling breathing on me makes me freak out and hearing my other half chew can turn me quietly homicidal. The lack of filter between brain and mouth. My cats were, as a child, and are still now my life…far more than people.

Mine is ADHD (obviously lots of other classic symptoms like focussing on the wrong stuff etc too). My mum always said she wondered if I was autistic too. I’m not, just a different flavour of neurodivergent.

As an aside - your 13yo DD sometimes sleeps in with you?! Whut? o.O. Like I would at that age if I HAD to, like I would now. But, my god, I’d have taken the bath tub first 😂. Your other DD is definitely not being unreasonable to refuse.

I have said YABU as you haven't got an assessment.

Your DD is clearly high functioning, school probably aren't concerned as she's quiet and clever and doesn't disturb other DC - basically she's not an issue for them.

She might be on the spectrum, she might not but clearly this has been going on for a long time.

Sometimes labels help, sometimes they hinder, in your case, if your DD is ND I think it would be helpful as you can explain her lack of empathy and she will be able to articulate it to her peers etc. Otherwise she might just come across as a bit uncaring /not bothered and people will give her more skack (hopefully)

*give her more slack if they know she's ND

I would trust your instinct op. As many others have said, many girls develop early 'coping' mechanisms which in reality merely mask their neurodivergence, storing up problems for the futute. There is 'something going on' with my dd too, but I suspect ADD. She has control and sensory issues and struggles to regulate her emotional responses. School 'do not see it' despite us having intervention last year when she started reception and she began refusing to put her uniform or seatbelt on. She's another model student. Despite the horrendously torrid time we endured at home last year, we have seen virtually no handover regarding anything other than academia between last year's teacher and this year's. Her senco believes she 'just doesn't want to put her shoes and socks on' some mornings and is choosing to behave that way.

We'll be exploring private assessment. She's doing well for now, following advice and strategies from the family worker and mental health team. But I'm all too aware that could fall apart as she gets older. Our girls deserve so much better than tp continue being overlooked.

Schools are often bad at spotting autism. I raised it as an issue with DS numerous times and I was always told not to worry he was "normal". He was finally diagnosed at 16. My sister sounds exactly like your DD she was diagnosed in her 40s and my Mum in her 70s is now certain she is but not getting tested Personally I find it very easy to spot a possible autistic child. My DH takes the piss as I use to help out at school and guessed so many of the 4 kids classmates as autistic or have ADHD almost all of whom have gone on and been diagnosed. The teachers didn't seem to pick up on it at all, even when approached by concerned parents.

Girls mask and will often present differently.
It's unreasonable to expect people to agree your DD has autism based on your observations, but 100% reasonable for you to expect relevant professionals around your child to listen to your observations as a parent with an open mind.

You might find it helpful to access support in SEN parenting groups. It's worrying common for parents of SEN children to be dismissed.

Everyone told me that there was no way my DD had autism and I was wasting my time seeking a diagnosis. She was eventually diagnosed and the hospital team who diagnosed her all said afterwards that the assessment confirmed what they saw instantly. Other professionals have an idea of what autism looks like but often it's a very restricted version. They don't see the stereotypes so they don't see autism.

She sounds just like my dd, though dd is now almost 19, she was diagnosed when she was 3, luckily it was slightly easier back then (not huge waiting list). Tbh a diagnosis hasn’t helped her hugely and she has always had similar friends who are not diagnosed. I guess it’s helped her to understand why she is like she is but she’s received little support due to being so academically able and being a quite child. She’s now speaking a ADHD diagnosis.

Food is probably DD’s biggest issue, her diet is very limited. Everything else is manageable. She has recently started uni and is doing great.

Often support (MH services, educational support, adjustments) are only given once there is a diagnosis. For example, even though she currently doesn’t cause an issue tor the teachers in school she may benefit from a safe space for her to go if she is overwhelmed or anxious. Rather than being left to just deal with things on her own.
Diagnosis takes years and often girls will only be able to mask for so long. It may be by the time she gets the diagnosis she needs more support than she does currently.
Personally I think the most important thing about diagnosis is the ability to form a positive autistic identity. If it’s handled right she can start to understand herself and become part of the ND community in a positive way.

She sounds just like me. I'm not autistic, however I have had full on social anxiety my whole life and bouts depression and generalised anxiety. I also had a pretty bad eating disorder in my late teens/early 20s and think I probably do have mild OCD but havent had that diagnosed. Not sure if that's any help but I literally did all the same things your DD is doing now