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?

Dear OP,

You could be describing my daughter at a similar age (she's now in her early 30s). Like you, I wondered (as I have Aspergers and am a qualified child psychotherapist!) but, in the event, it turned out to be OCD and GAD. Over the years DD has managed (with some private therapy) to get the OCD to a very manageable level: she is still working on the GAD but refuses to let it change her behaviour or miss out on things.

My DD is wonderful: successful career in a very tough industry; gorgeous husband; too many friends to count. I'd give your DD more time to grow into herself, while supporting her to be entirely herself - she's being who she's meant to be.

All good wishes,
another Mummy.

Walking by 11 months - never crawled
Talking in sentences by 18 months and toilet trained not long after -neither of these things are unusual, they're perfectly normal.

Hi OP,

I’ve read your posts and not others because autism threads always get full of horrible stereotypes and shitty attitudes from other posters.

your DD sounds a lot like mine, diagnosed autistic but at a late stage. It is really really hard to get them to diagnose girls. In the end we went private, she wanted it by then but it has been detrimental to her to wait till she was an older teen. Don’t wait. It sounds like she has autistic traits to me, feel free to PM.

She has lots of similarities to my DD, who was diagnosed at 9. Dogs are her special interest. When we go on holiday she talks every day about missing the dog, and cries about being away from him. We don’t do 11 day holidays anymore! Down to 4 nights 🙈

As an aside, I noticed you said she isn’t allowed tech after 8pm.

For neurodivergent children and teens, screens are often used as a way to self regulate. Bedtime can be especially hard if you have a mind that won’t switch off/anxiety/your body finds going to sleep hard.

My DD goes to sleep watching cartoons. My other DC don’t but they are neurotypical, so the “book in bed, lights out by x time” works differently and is fairer for them.

Pick your battles. I know it’s hard though when we are conditioned by all the rules about parenting, but neurodivergent DC do need a different approach at times

PS: I still have to serve her spaghetti and (vegetarian) bolognese in separate bowls, and she still loves our dog more than any human other than me and her husband!

if you push and push and eventually your daughter was diagnosed with autism, what benefit would that bring to her or you . ? She is who she is . She’s a unique little girl . She maybe slightly autistic / maybe not but is it so important to label her unique personality who I’m sure will be very similar to many other peers when she goes to secondary school . I’d be focusing on building her confidence up , except who she for who she is , encourage her interaction with others to help her with her social skills, and follow her interests .That would be better for your daughter .

Obviously, it's not something that can be diagnosed based on one post here, but it sounds like autism to me. I had to fight for years to get a referral for my DD because at school they just saw a well-behaved, high-achieving child. She was having massive social issues and seemed really unhappy but that didn't seem to matter. When she was finally diagnosed the Dr (who was the head person for the service in our area) apologised profusely that it had taken so long.

DD's issues have become more obvious the older she gets and she's now being assessed for ADHD (as an adult) as well. My advice is to keep fighting for that referral and even consider going private.

This could as easily be anxiety based, sounds like lots of control (playing only with certain people, eating only certain food, anxious about scenarios that are not likely etc). Appreciate autism is a spectrum but my direct experience of autism is much much stronger examples of issues than these which are not in my view not necessarily untypical of a quirky 11 year old. Even if it is ASD, anxiety often features so that should be something your GP can help support irrespective of if she is eligible for an NHS assessment. It does sound challenging though and I wish you the best with supporting your daughter.

For my DD it was a huge relief to get the diagnosis. It gave her a much better understanding of herself and she could stop thinking she must be a terrible person to struggle with friendships so much. She could tell her friends who then treated her with more understanding of her difficulties. It also meant she got more support at school including extra time for exams. Now she's at university she's getting substantial support via DSA (it's not money in her pocket, it's support services provided). I'd say her diagnosis has been invaluable to her.

I’m a teacher at secondary and I can literally picture the type of child you are describing. I’ve seen quite a few girls like you describe- they usually are on the brighter side, so therefore additional learning needs are not referred, because usually there is nothing affecting learning

It does sound like she has ASD tendencies, teachers will refer to the send department of she is becoming overwhelmed in school, in corridors, noisy class situations etc. Have you asked them if she shows discomfort in these situations? Might be worth making them aware to look out for. They have probably noticed she secludes from peers and is intolerant towards others, but again that doesn’t always impact learning. SEMH needs can certainly be referred though, might be worth telling them about her anxieties/obsession over the flies and dog. These are both things over heard before in students who have ASD tendencies.

@Ydkiml if you are Autistic and get a diagnosis it brings numerous benefits. Why not get a diagnosis? Diagnoses are not labels they are tools to help people live. Please go away and research this. Really unhelpful. Presumably that's how you are looking at your child. Yes some cultures don't like labels. That's their problem.

As it happens my DC (diagnosed..but we had to push this) gets 100x the support and recognition of that of their best friend whose father refuses to 'label' him. He's really struggling now. School are limited he can't access specialist support and the child himself has emotional issues as he has low self esteem. My DC is extremely proud of being Autistic. Yes he struggles but at least he knows why. And when it's not related to his ASC (yes he can be naughty and everything else too) we tell him. It's not a get out of jail free card..its about adjustments.

Have you ever been assessed for autism? All the things you describe are very typical for undiagnosed autistic women.

We got a referral without school support. Took longer but we got there in the end.
luckily I had kept a little diary. Noting down a few times a years of behaviours I didn’t think were quite right.
As you say, girls mask. My dd does not present in school … but it doesn't mean she ‘doesn't have it in school’ …! When she comes home the meltdowns come .. home is her safe place.
keep plugging op. Get it on paper of all the behaviours at various ages etc …

There are perfectly valid reasons not to be be assessed and support is rarely dependent on diagnosis so nobody should feel pressured into taking that route.

I work on an autism diagnostic team. With your op as a referral letter we would accept the referral and I would fully expect a diagnosis to follow.

There are usually subtle signs that the trained eye can spot in school, even when school insists they are fine.

It depends on support needs and presenting profile of course, but in my experience the majority of autistic young people benefit from their needs being correctly understood. Equality act protection is much easier with a diagnosis that is covered, reasonable adjustments become mandatory, arrangements such as extra time in exams far easier to arrange without further testing. It's also much easier to arrange benefits such as DLA and PIP when the remote assessor can understand that the person is autisic as a hook to hang their understanding of the described needs on.

My daughter is diagnosed autistic. I could have written your post.
We had issues with daddy longlegs last week in the garden and she scrubbed herself raw the shower because she was terrified they were everywhere and in her room, she eats in her room as can't bear to be around us etc.
She broke down on transition to secondary and we are still picking up the pieces 4 years later.
Go and see your GP and push for a referral, or get one privately

Why does she need to be labelled as a 'something'?

Won’t touch vegetables so this is another concern now she’s veggie so what does she actually eat?

And where is her father in all of this? Grandparents? What relationship/hehaviour examples does she have to follow?

Does she have any friends?

I managed to get DS diagnosed (2018-2019) and school still don't see it because he's great at masking. It's so frustrating. Fortunately during the diagnosis pathway, the consultant recognised the discrepency between school/ home behaviour and the eruption of a meltdown that would often release even on seeing me as he walked past the threshold of the school door.

It is well worth investigating/ diagnosis. It means the explanation and pathways are more clear if you hit a phase where the wheels fall off, and the reality is that the
education system and social network of modern life does often trigger that in "higher functioning" teenagers.

DS and I have benefited from diagnosis. It helps us pick our battles and responses and avoid pointless ones. If/ when he encounters difficulties at school, they'll know it's an autistic reaction and needs responding in an autistic-friendly way to manage the triggers, rather than aggravating NT responses.

It's like getting diagnosed as pre-diabetic... you might be able to manage it by diet and lifestyle. Knowing helps inform that lifestyle and helps you assert yourself against pressure. If the condition continues into diabetes, there is access to appropriate management. Far far better to be diagnosed and informed at an early stage before hitting a crisis point and incurring lasting damage.

I agree with this post.

My DD13 was diagnosed at 9, but apart from telling her, we didn't do anything that we wouldn't have done in other circumstances. To us she was (and is) a quirky girl who didn't need to be pigeonholed. We gave her plenty of opportunities , and she ended up becoming very skilled as a golf player and at acting. She has a few nice friends and a good social life ( ie as good as she wants it to be, not too much of anything). She does poorly at school but we have a coach who helps her to maintain her place in her class. I imagine that in the future she may work with animals or children since that is where her interests lie.

In your situation I'd just give your DD plenty of opportunities and see where her interests take her.

I was just coming on to say this in response to GP said school needed to be concerned in order for an assessment because this wasn't true at all in my case and I'd suggest you see a new GP. My GP just referred on to the pathway from my concerns. The school (primary) filled in their part of the form but had no concerns whatsoever. She was seen however due to my answers on the form and we eventually got a diagnosis of ADHD. She has now been referred on to the ASD pathway as the nurse during the ADHD assessment said some of dds answers were indicative of ASD. I would go back yo your GP and insist on a referral. Dd has support now from school, a counsellor and has done a lot of research herself and this is really helpful to her. I'm positive she would be massively struggling in secondary now without the diagnosis.

Why does she need to be labelled as a 'something'?

Oh, ffs.
it isn’t a label, it is information about herself that will help her navigate life and secure any accommodations she needs.

Because otherwise she will be labelled shy, rude, awkward, unsociable, weird, etc etc. and will internalise these labels and start to believe these things about herself. She will have a lifetime of struggling to fit in and gaslighting herself, if she doesn’t know she is autistic.

OP, people on here have a bit of an attitude about autism atm. She sounds autistic to me.

I feel for you I really do, I'm battling the same thing, my son is 18months old and has traits.. I've been fighting for months to get him medical help or to see someone. Kept being fob off by Gp and HV. We are finally seeing someone's only because he keeps fitting when he has fevers which is common. It took that one doctor to listen to my concerns. Now waiting for the appointments

Just keep fighting and pushing - also the schools can help as well. Good luck.

My ds was diagnosed before starting school, and it’s just as well because the school just couldn’t see it.
He’s at secondary now, in a school where listening to and working with parents is their core ethos and he’s getting tremendous support because I’m asking for it.

We also had him assessed for adhd but it’s not showing up at school (he’s an expert at masking) and he doesn’t see it in himself (if they would only flip the form and have him assess his peers on the opposite attributes I think you’d see it then. He just thinks of himself as normal) and a parents’ assessment is easily attributed to poor parenting. He actually performed very badly on the QD but they determined that his fidgeting was autistic stimming.

It’s so frustrating when you can clearly see what’s going on and can’t get help. Do go back to your gp and push if you’re able for the fight (I know it’s exhausting) and also reach out to autism parent support groups, Often they don’t gatekeep as they know how long it takes to diagnose.