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

@MamaAlwaysknowsbest I was sort of mutual. The issues was raised years ago when she was 5 and she didn’t even score higher enough by that doctor to have an ADOS and I didn’t push.
when it came back around I agreed to the assessment yes because it was highlighted that she wouldn’t cope in mainstream school but I didn’t understand why and this was apparently the first step.
i didn’t think she would get an autism diagnosis though - I assumed anxiety and other contributing factors to do with her complex life.

They don’t though. My niece has many traits of ADHD but masks in school. She was declined just for the waiting list to be assessed

Yeah it's terrible that we now identify people's issues and give them support with them. It was much better in the good old days when people just had to struggle.

Tricky.

Not an expert in this but I suspect the psych will see kids every day so inevitably knows what they’re looking for and would, one assumes, appreciate that kids would be anxious etc and factor that in. But what would be more curious to me is that the school had raised and continued to push the need for an assessment, they see hundreds of kids every year so I would trust their view that my child’s behaviour sat outside the ‘normal’ spectrum for a neurotypical child.

I get your discomfort about labelling her though,

I guess for me it would come down to how she is - if she’s happy and thriving at school and at home then I wouldn’t see the need to label her. However if she is struggling at school or having issues with anxiety then perhaps this could help her get extra support or understanding ?

I’m an ADOS assessor as part of my job. I’ve done many assessments, the ADOS is standardised to take place with someone who is a stranger to the child. You really can’t do it if you already know the child as they will react differently to you and you will also bring in your own preconceptions.
The playing with the characters part we are looking for so many things - does the child animate the figures, how do they play - do they set up a scene and then act it out, or do they just carefully inspect and set everything out but not really play. How do they accept us (the assessor) into the play - can they incorporate our ideas and play with us, or do they feel more comfortable playing alone and with their own ideas.
In the ADOS there is no pass or fail in any of the tasks - it’s all how the child reacts to them and with us. As far as the score goes you complete well over 30 different scores for the 10 tasks - so no one part of the assessment is used to come to a conclusion. As an assessor you are looking at language and communication, reciprocal social interaction and restricted and repetitive behaviours within all of the tasks, rather than just one. No one would get a high ADOS score just on eye contact alone. I hope that helps, but feel free to ask anything else.

Or rather we are telling people there is something “wrong” with them with a label instead of just celebrating people for being different

If you had the tiniest amount of knowledge about the process or the actual prevailing climate for both children and adults who are seeking assessment, you would be embarrassed by this highly erroneous assertion.

Before I had my "label" I thought I was just lazy and wanted to kill myself. I now have strategies that help me cope and reasonable adjustments at work that help me cope. Because I have a "label". Hth.

Unfortunately, society isn't geared towards celebrating difference so those who are substantially different from the prevalent neurotype do need additional support, which is usually only granted following diagnosis.

@Dilysthemilk thats interesting - thank you.
I mean I watched the ADOS and I could see she struggled with some elements but wasn’t sure if you had to struggle with all the elements.
she told him when she needed to make a story up with props that she could but it would be in 2 days 😂😂

DS has a diagnosis of ASD, his eye contact with me is absolutely fine. However in situations where he doesn't know people and feels stressed or anxious, that is when it falls away. This may be why others are noticing things that you perhaps aren't.

I'm similar (adult ASD diagnosis). I can generally give good eye contact but have to look away if a conversation is stressful or is making me uncomfortable.

Do you actually know anything at all about autism, because you really sound like you don't. If you don't know anything about something then I'd recommend you don't make any sweeping statements about it, it just makes you look very ignorant.

These are professionals, they don't diagnose for the sake of it and certainly know more about how asd presents in girls than you do.

I noticed more differences on my dd in teens than childhood so I'd bare it in mi d as she gets older. But no the diagnosis changes nothing about her and hopefully will help her understand herself better

I’m in the medical profession. I know enough to form an opinion. And you don’t get to shut that down just because it differs from yours.

That’s so funny 😆 it’s why I have the best job in the world!

Clueless.

You do know you don't just rock up and ask for a diagnosis? They look at hoards of evidence from different environments.

"the prevalent neurotype" is such a weird idea. We take a subset of all the million dimensons in which a brain can be 'typical' or 'divergent' and kind of sanctify it with the label of 'neurodivergence' -- as if there was some sense in which all the non-autistic people were standard and uniform. It has the bad effect of converting a developmental disorder into an 'identity' and distorting the ways in which we talk and think of it. That deletion, for example, was ridiculous. What the poster said may or may not have had truth in it (I have no idea), but why was it so unacceptable to say it?

I've read somewhere that the ADOS "brings" out the Autism. That is... the tests are designed to evoke the common traits for Autism. For example, my son loved imaginative play- but was very resistant to anyone putting their own ideas (I didn't know this at the time, I just thought it was just peculiar). The assessor pretty much provoked him... in a nicer way... and kept suggesting her ideas in play. He obviously refused and did not want to play with her.

I’m not disputing that. What I’m saying is autism and ADHD are real disorders and are very problematic but the hoards of people being diagnosed with it the past few years because they have “quirks” or differences or traits that can be explained fully by anxiety depression or social anxiety is on an epic scale.

I know a lot of parents of autistic children (myself included!) who’s scepticism in an autism diagnosis for their children is rooted in both a lack of understanding of autism and a bit of ableism as well.

you are your child’s safe place, their base. Your reference for what is a normal child is maybe 3 or 4 kids max? These paediatricians etc can compare your child to the hundreds of autistic / neurotypical children they’ve seen. Your daughters school have a much better reflection of how she reacts in situations where she is put under pressure much more than she might be at home.

and as mentioned above your view of normal might be skewed due to a family with a lot of neurodivergence running through it.

Epic scale based on the reckons of wellhello24?

I think Bus makes an excellent point. DD shows few traits at home bar some communication differences, and traits in response to things occurring out of the ordinary or being in some way new, different or in transition, yet at school she experiences multiple sensory and processing difficulties which make the environment close to intolerable. Our home has been forged, over the years, into an environment pretty perfectly adjusted to DD's needs.

I noticed more differences on my dd in teens than childhood so I'd bare it in mi d as she gets older. But no the diagnosis changes nothing about her and hopefully will help her understand herself better

Yes, same here.

My daughter was diagnosed last year at 18. We always noticed traits but it was around 14/15 that she really started to struggle.

I wasn’t sure about the ADOS either - mainly because I found it odd that they’d get an 18 year old to play with children’s toys and children’s books (as did she).

They went through the report with us at the second appointment and talked about her reactions to the things they asked her to do, her lack of responses when they were chit chatting, refusal to do some of the things, etc.

Eye contact came up, but only in that they’d clocked DD’s eye contact trick - she looks at the top of your nose or the edge of your eyebrow - everyone else used to say “oh, but she makes eye contact fine” but they realised what she was doing