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?

Trust your own instincts and believe in yourself as a mother.

We continually had the primary school denying both of our children's needs, even WITH a diagnosis. Their response was "we don't see it".

The secondary school sure as hell saw it.

Push for an assessment with the GP. Tell them that teachers aren't trained to diagnose autism so please refer to SALT and paediatrician for a proper assessment. Look up the NICE guidelines in referral for assessment.

Ps, I don't mean to sound blasé (I often ponder some of my own child's behaviours, and wouldn't be surprised to find myself in your shoes one day)

I just want to reassure you that I shared many of your daughters traits (she sounds great!) and went on to have a happy and successful life so far (albeit with a bit of situational anxiety from time to time!(

Following with interest as my dd has a few of these traits, and I flit between there is something going on and she is fine. 😬

Schools can only refer based on the evidence they can see, and if she's masking well they won't see it. This is where the problems lie. They could make a referral based on parental evidence but it could well be knocked back until something goes wrong at school, providing more evidence for an assessment.
If you have the means to pay for a private assessment, or could scrape together the means, then do it - it's much faster, sadly.

No advice on how to proceed but it does sound like there's cause for concern. Dd was diagnosed in Y4.

@Itisbetter out of interest, would you mind explaining the significance of those questions please? And why did you choose those particular ones?

She is really against needing any sort of assessment - I have spoken to her about getting some help for the things she struggles with and was met with her telling me she has no issues and the problems are actually me and everyone else for all the things we do that she hates

Mine also rejected the notion that something is wrong with them such that they need “help”. An assessment isn’t to “help” them by changing them, or trying to make them like what they hate.

I think you need to be very literal with her. An assessment is to chat with her about how she views the world and how she prefers to learn and interact with people so that the assessor can write up ways in which the teachers have to change how they teach her and how they treat her. So, yes the problems ARE actually everyone else in that she isn’t being accommodated properly for being ND.

As you’d be getting a child assessment, I think that usually comes with parenting advice as well.

Because in my experience the answers draw a better picture than some of the more usual stereotypes, and in thinking about the answers OP will remember other things about her daughter.

Sodie - I’ve PMd you

Your GP is incorrect, our DD was referred without any back up from school as they were completely blind to her issues (usual masking at school, exploding at home.)
We went to the GP twice with our list of concerns, eventually referred to CAMHS and diagnosed with ADHD age 10 and then ASD at 13.

From experience I would say you need to trust your instincts, be your child's advocate and be prepared to fight each step of the way. Best of luck OP.

She sounds just like me when I was a child - even down to only showing my pets affection. I was utterly devoted to one pet (and it me - its death affected me for years).

It doesn’t mean she has autism.

Like Rosanna, I see a lot of those traits in myself especially as a child. Especially the insomnia, the obsessions with ideas (like the flies), lack of empathy, hates affection, socially awkward. I’d like to think I’ve mellowed with age!

I did have some treatment for depression and OCD when I was in my late teens and obsessive thoughts do still overwhelm me at times of stress.

Could be autism. There is still such a lack of understanding of high functioning autism and how it presents differently in girls. If I didn't have a diagnosis myself I would not have had the certainty I have to pursue a diagnosis for my DD. I am really so very tired of having to explain the varying presentations of autism to professionals who should know better.

Could also be anxiety. I'd agree it sounds like something is not not right. Can you afford counseling for your DD to help with her anxiety? I think that would be useful whether she is autistic or not. You could try accessing this via GP, but if the waiting lists where you live are anything like here, private is really the only option.

That said, I kind of understand her not wanting to be home alone at 11, if I read that bit correctly?

Can you self refer to CAMHS in your area for an assessment? As you’ve said girls often mask at school but CAMHS should be aware of that and hopefully take your views seriously.

Thanks for explanation @Itisbetter

Can you go privately for an assessment?

it’s not necessarily about delayed milestones but abnormal (my DS crawled for a week, walked 10 months, he spoke his first word at 7 months but that didn’t develop as would be expected ie he couldn’t communicate what he wanted even when he had the words) especially in terms of language development. Each area has a different nhs pathway, you don’t necessarily need school support as they don’t see the quiet ones (don’t hVe time or money to see it).

I am not sure what is the benefit of people saying I have these traits and I am not autistic. Maybe you are undiagnosed!

My dd is a champion masker who only got diagnosedwith autism at 18 because she was being assessed for her hearing and the paediatrician (bless her) spotted her issues. I say trust your gut if you think something is off. I knew in my heart there was something different in the way she was processing information and interacting with others. We thought it was hearing but it went deeper than that. The difference with her brother, who is 3 years younger, but somehow more advanced and developing in the typical path, is stark. It was hard not to compare.

Dd later said she always knew that she was wired differently. She was also hiding a lot of anxiety. It got harder for her to cope once she went to senior school. It started to unravel then.

The interview questions which the paediatrican used to diagnose my dd are in ADI-R form (Autism Diagnostic Interview - Revised). I tried googling to see if I can find the questions online but I think they are only for sale. You'd probably need a professional to make sense of the answers.

She sounds very very similar to my dd. At age 4-5 I asked for dd to be assessed for ASD as there were so many signs. Someone observed her at school and said she was fine - she is a very quiet, sensitive, rule following child. She has masked and copied throughout her school life. She is now 15 and has been on CAMHS waiting list for assessment since age 12, when a build up of other things made me try again. I really regret not pushing again earlier though - I hadn't expected the waiting list to be so long and now I think going through an assessment during GCSE year would be quite distressing for her.

The other things that came to the fore age 12 were anxiety, OCD and misophonia - which is what you've described as not liking eating or breathing sounds. My dd self diagnosed her misophonia. I am her main trigger - my eating, breathing, speaking, sniffing, all severely trigger her and living with it is heartbreaking as it feels like your child is allergic to you, the reactions are so extreme. Misophonia and ASD are often connected.

I also discovered recently my dd has been self harming for over a year. I've tried and tried to get more immediate help from CAMHS with no success. I did manage to get some support elsewhere for her misophonia though so please pm me if you'd like to know more about this (it can't be lessened, but there are coping strategies that can be practiced).

I'm very happy to be pm'd as I recognise so much of what you've said.

Hi Op I can sympathise as I feel the same about my DD and agree that masking for girls is a major issue when it comes to getting a diagnosis. My family admit my daughter is quirky however say that because I’m a teacher I look for these things. My mum feels that if I wasn’t in the job I’m in I probably wouldn’t think twice about her behaviours. My DD hit milestones early like yours and verbally has always been far advanced from her peers. She is only 6 and has came on leaps and bounds in the last few years but there is still just something there. I really feel for her because it definitely holds her back. Certain things make her very anxious like a new place or any changes to routine. The melt downs are a very rare occurrence now thankfully. No concerns at school whatsoever. She can be very loud (but doesn’t like loud noises herself) and often makes very rude comments in her very loud voice! Well they aren’t really rude they are factual but things you keep to yourself. It’s almost like a mini adult commenting on all the things we think but don’t say!
The comment you made about the breathing she has said to us before and sometimes, especially if feeling under the weather can’t tolerate being touched. She can be quite snuggly and affectionate on her terms but if I ask for a cuddle it’s like a side lean into cuddle.
Not the dog though she does call the dog her sister. She has a doll and takes her everywhere except school. I hear her talk to her at night mostly, she can’t sleep
without her and despite collecting around 10 of these dolls over the years knows exactly which one is THE one.
Also the flies, I have had similar with her. Then for the next few nights and off and on for 2 weeks was repeatedly called up every at night because she could hear buzzing.
Sorry for waffling on but I really get you and when I am having a particularly tough time due to the latest setback I get really upset. It’s a deep sadness I feel for her, I wish I could help her sometimes but unfortunately I can’t.

A lot of what you're describing sounds very familiar to me. I think my DD was 12 when I spoke with her about autism (as a concept/slight possibility) and she promptly went away and read lots of stuff about it and found that very helpful. So I'm sorry you're hitting resistance to the idea at the moment, although that is very understandable. My DD was diagnosed at 14; interestingly, we'd put the process in train before she changed schools that year, but within weeks of knowing her, her tutor and another involved staff member were very confident that the assessment was going to be positive. The benefit for DD of diagnosis was in knowing / accepting that she was different to others around her, and that it was therefore ok not to always do the same as others did. For your daughter perhaps you can frame the situation as "others may see the world rather differently to you and this may help you understand other people better and thus how to interact with them".

Sleep - have you tried (and/or are you willing to try) music or audiobooks or similar at night? DD is now 20 and still relies on audiobooks a lot of the time, either to sleep or to cope if she can't.

Some of the things that helped my DD have been involvement in activities that challenge her but also have fairly structured and rigorous expectations. Depending on your daughter's interests / potential interests, look around for things she might enoy, and that's where she may find a good enough fit to improve her social skills along the way. Other than typical team sports, Guides, look at things like rock climbing or rowing, cadets, museum volunteering, choirs or orchestras, St john ambulance ...

The biggest thing I notice with both my teens is that although fiercely academic they can be a lot more black and white about stuff that I would expect at their current ages.

Feel free to PM me if you'd like to discuss more ideas. Good luck.

Are any of these behaviours a problem?

Rather than worrying about a diagnosis (Although you can obviously apply it’s not speedy) my advice is that there are many personalities that sit somewhere on the spectrum and it’s our role as parents of non conventional dc to give them the learned skills they need. Dd1 wasn’t especially empathetic, it’s an introvert and socially awkward but happier with adults (I think mostly as they lead the conversation) and gets anxious. Rather than looking at it as something wrong with her we have spoken about her natural response to things and how she can put steps in place to help her show empathy or be less anxious. Most people get anxious around people they don’t know but some people handle it better than others.

we all have our go to behaviour and learned behaviour so you’ve identified DD’s gaps but haven’t moved to the next step of supporting her in learning the steps that will help plug those gaps in every day life.

@NeedAHoliday2021 whilst I agree that as parents we should of course equip our dcs with the tools to compensate, autism is a life long neurological condition. It cannot be changed, only managed. I think the diagnosis is important because otherwise, they feel like a square peg in a world that is a round hole. Learning the 'tools' is just a constant reminder to them that there is something wrong with them.

It is not wrong, just different. They need the vocabulary to understand their condition which makes adapting and compensating easier. Everyone on the spectrum presents slightly differently.

My dd's diagnosis put less pressure on her to adapt to the NT world and the onus back on me to learn about her condition and adapt to her reality.

@Discovereads

Discovereads · Yesterday 23:49
Summerfun54321 · Yesterday 23:36
What’s the benefit to your DD of an autism diagnosis? Genuine question.

Other than getting specific recommendations for accommodations tailored to her, I learned that autistic people have atypical reactions to certain medications. The assessor made a big bold note of this to the GP and explained to me that some medications either don’t work in autistic people or have a much higher risk of causing adverse side effects so it’s something to be aware of and mention to a GP or Consultant whenever you’re being prescribed medicine.

Do you have a list of such meds, or is ther somewhere I can obtain one please?

I know that CBT and conventional counselling have poor results for neurodiverse people as they ar based on NT interactions, but I'm very interested to know which physical meds could possibly have adverse reactions.