To worry that she hasn’t got autism - but will get diagnosed

[Laughterbutchaos21]

I am fully aware that I may be jumped on and I’m willing to accept that.

I have a daughter who is in year 5, she never really shows any traits at home ( does have strong interests ) she has great conversations/ eye contact / no sensory issues to clothes. I am aware it is a spectrum.
school had some difficulties with being overly passive / struggling with certain situations so wanted her to be assessed. This was 2 years ago and I genuinely didn’t think much of it.
stop to a few weeks ago we got an appointment through for an ados assessment followed by an assessor with a community paediatrician.
we went to ados and I sat at the back of the room, but was allowed in as long as I didn’t talk to her etc
I mean the test was done with someone she has never met before I think any child would have found it strange and been anxious.
some of the toys / sections were quite young like watch her play with figures etc.
it was really interesting to see the assement.
fast forward to the community paeds consultant appointment, she asked me a bunch of questions and then told me at the end that although she can’t give me the ADOS score until the the review appointment when the SLT who did the ados will also be there but that she already has the report
and based on his report / school questionnaire and her assessment that the likelihood is that she will be diagnosed.
now I am not saying it’s a bad thing, she is still the same child I love dearly today as she was yesterday but I’m generally shocked and a little confused.
I asked if it was anything that I said that lead to this outcome and she laughed and said no you said the opposite to everyone else.
how does someone in 1 hour long ADOS assessments see more than I have in 10 years ??
can this ADOS assessments tell between it just being an anxious child at the time ?
I think I’m just concerned that she is being diagnosed with something for the rest of her life when I am unsure

You can't be mildly autistic and you can't be just a little bit autistic. People who use those phrases really piss me off.
The correct wording is high functioning or low functioning. Yes it's a massive spectrum but the word mild doesn't belong when you're talking about autism. I have two autistic children, one who is high functioning and one who is low functioning. My DD doesn't have a mild case of autism and its actually incredibly insulting to suggest she does.

Just because someone else's autism or adhd may affect them more severely than mine does me, it doesn't invalidate my diagnosis. I struggle more than than some other people with the same diagnosis. It doesn't mean they don't have it, or that they're not deserving of accommodation and understanding. I have no right to feel aggrieved because some people say they have adhd but they cope with it better, or are less affected by it than me. Stop trying to make disabled people feel like they don't deserve help.

Eye contact is just a tiny tiny part of an autism diagnosis and not every autistic person finds it difficult. It’s also right that it’s about how eye contact is made and not whether it is made at all, sometimes the issue can be that eye contact is too intense/ frequent etc rather than it not being present at all. Also bear in mind your DD may find some things easier to do with her mother than she does in other settings.

Broadly speaking autism is characterised by difficulties in social communication and interaction, eye contact is just one small aspect of social communication/ interaction, difficulties in maintaining eye contact can be a sign of autism but it could also be due to something else and equally some autistic people can make eye contact. I have autism and have never had anybody tell me I don’t make eye contact or that I present any differently to someone neurotypical in this regard.

Aside from eye contact what other points raised by the school and other professionals do you disagree with?

In addition to this, since when is it ok to judge disabled people on whether they're able to work or not? Me having adhd/asd and holding down a job does NOT undermine disabled people who can't work. We are different people with different needs.

Any way, is that the only measure of success or ability in this world?

Can work: not disabled
Can't work: disabled

That is not how it should work.

High functioning/ low functioning is offensive too and not something our NHS provider used. You can’t be high functioning to get a diagnosis. If you’re high functioning your daily life isn’t going to be impaired or restricted.

regards to “ mild “ they didn’t mention this as she couldn’t give me a break down of feedback without the SLT present who did the ADOS.
all I know is that less than 1/4 of the way through our appointment she said “ I don’t think you could really leave here without a diagnosis “
she then ar the end obviously said she has the ados result but wouldn’t disclose it and when I asked if it was anything I said that made her come to that decision she said no I think you have said the opposite to a lot of the people and they you have significantly underplayed how much this would be effecting her.
she did say though that she was intelligent and in terms of progress she will have every ability if it is something she is interested in to succeed. She also said with support that she could attend mainstream with correct support

@MolkosTeenageAngst school say
that she likes having friends but struggles to set up communication
she will play with 1 or 2 children at playtime if it is set up by her 1-1.
she does not start conversations, she also doesn’t speak when there is a convo about something she is not interested in. ( I am aware this is an issue ) she is very interested in a specific country and everything to do with it which does take over around 90 percent of our life.
she is very well behaved, she hates getting in to trouble so in class she is not causing disruption but often looks unengaged / not interested and loses focus.
she is distracted by noise and movement, and gets stressed out if the class is overly noisy.
she can’t do assembly because the noise so has never managed to attend.
she does show empathy and knows when someone is crying that she is upset like she would give me a cuddle if I was crying. Someone would physically need to be crying though for her to know they are upset.
if her school friends Were crying she may comfort them or she may not depending if she thinks it’s appropriate for them to be crying
Example friend got hit by a ball and cried, she didn’t comfort her because she said the ball only hit her in the leg.
erm not sure what the ados picked up

@ImaniMumsnet in my opinion this thread should be deleted now. Some of the 'views' are awful and, quite frankly, scary in this day and age.

I mean... From what i know of autism, i wouldn't be surprised at all if she was diagnosed from this.

I agree.

I find how MN HQ let ASC ableism go in a way they don’t with less hidden disabilities quite scary. They really seem to be quite mis informed and behind the times.

So, would you have the support needed without official label? Is it too late for this now?

I find how MN HQ let ASC ableism go in a way they don’t with less hidden disabilities quite scary. They really seem to be quite mis informed and behind the times.

I agree - it's really shocking that their only appearance on this thread was to defend someone posting such offensive, ableist shite. The post claiming that adults look up autistic behaviours so that they can pretend to be autistic and get a diagnosis is still there.

As someone diagnosed with autism as an adult it's pretty clear that I am not welcome here.

It's like the 1970's. Someone will be a long in a second to a) say some posters lack a sense of hmour and b) if they didn't respond so 'aggressively' to discrimination, maybe people would be more 'understanding'.

As for the poster who was outraged at the idea abelism was like racism and sexism...

@greyflannel maybe in some cases, but seems more likely that the massive uptick in neurodivergence worldwide is to do with some sort of bioaccumulation in mothers/fathers and
or epigenetics.

There is a previous post where I think suggests someone suggests counseling so as to understand why some things said on here have triggered them so much.

Un-fucking-believable.

To me (by no means an expert but I am a diagnosed autistic adult who teaches children with ASD in a special school) this would tick a lot of boxes for autism and is almost a textbook example of how it can effect girls. The things that stand out for me are:

Wants to be social, likes people but struggles with how to actually communicate socially.
Finds it difficult to engage in play outside of her own terms/ in games she isn’t in control of.
Prefers to play with only one or two children at a time rather than in a big group.
Difficulty initiating communication, especially social communication outside of her own interests.
A special interest which is all consuming to the point it is almost an obsession. Difficulty engaging in conversations outside of this.
Doesn’t like getting into trouble so exceptionally well behaved in school.
Noise sensitive.
Unable to read cues around emotions/ to recognise how somebody is feeling without a very obvious signifier (eg: crying), misses more subtle cues.
Shows empathy in specific situations but only if it matches her own viewpoint of what would be upsetting, unable to see things from another perspective and recognise that something that she wouldn’t be upset about might be upsetting to someone else.

All of these would be fairly significant flags to me that, put together, would suggest an autism diagnosis could be a fairly likely outcome. What is it that makes you think it’s not the correct diagnosis?

It's like the 1970's. Someone will be a long in a second to a) say some posters lack a sense of hmour and b) if they didn't respond so 'aggressively' to discrimination, maybe people would be more 'understanding'.

Don't forget (all from this thread and still up) people being "triggered", "professionally offended", "living in a make-believe world", "obsessional" and "defensive" and how that is not "rational". People with diagnoses being told to "educate yourself" and consider "counselling to look into why you are so easily offended and triggered?"

It's so unbearably repugnant that MN condones this stuff.

I just thnk its sad that a mum reached out for help understanding a potential diagnosis for a child that seems to have a fair few difficulties in life, but the focus sems to have been on other things. I hope the op has had some useful information about how autism presents in girls, how parents can miss signs as they adapt to their child and how the multidisciplinary team are supposed to work together to minimise misdiagnosis.

Has she been assessed for DLD?

It's a standalone language disorder with some traits that overlap/are mistaken for autism.

It's not as well known but far more common than autism. Approximately 3 kids in an average class. The easiest description I heard was It's like aural dyslexia. So children struggle with social communication as the words are getting jumbled. But they don't have the restrictive/repetitive signs of behaviour.

It's worth considering for anyone who believes autism doesn't fit but there are social communication difficulties.

I agree. But it's so important to call out disgusting attitudes and behaviour that could restrict people seeking or acknowledging diagnoses.

Quite. Imagine if this post was about a purely physical impairment.

Hi all
I really didn’t mean to cause offence or an argument- it all just came as a hit of a shock to me. We have had a really hard 10 years and a lot of medical difficulties to contend with so this just came as a bit of shock.
I am not upset because I don’t want her labelled as autistic, suppose I was just trying to understand.
she is still the same girl but I will of course do everything to support her if and when issues arise.

And the moral of this story may be that it is better to post on SEN or SN Child boards, rather than on AIBU, where goady people like to congregate, dispute well established facts and pour scorn on the experiences of autistic people and their families.

That's the reason that we have well qualified professionals doing these assessments as many of the signs can be hard for even parents to see as your kids are just normal to you