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

For what it’s worth regarding EHCP and support she has always had an EHCP and full funding / 32:5 hours 1-1 etc
so nothing like that will change.

I can't speak for the child assessment as I was assessed as an adult.

I submitted an initial self-referral form in which I had to outline why I thought I needed an assessment, then a 2.5y wait.

Then there were two more forms: the adult autism spectrum quotient and a developmental questionnaire that my parents had to fill in with me.

Then there was an assessment with a specialist RMN that I went to alone, and another with a clinical psychologist that my mum was asked to attend.

It's not one person making the decision based on an hour.

There's no way that there will be less due diligence when assessing a child.

Medical professionals make mistakes from time to time in all branches of medicine. It's why patients have the right to a second opinion. The risk of error doesn't mean that we stop going for dental checkups or mammograms and it shouldn't mean that we don't have children who are struggling assessed for learning disabilities.

The system isn't infallible. There are guidelines yes but as with every profession there is good and bad and some are more skilled than others. Things can be missed, things can be fudged. Kids can change and present differently throughout the years. The criteria itself has changed.

@VitoCorleoneOfMNMafia I don’t know I think they do go mainly on the ADOS assessment.

like I knew at the appointment or ADOS that her school questionnaire was suggestive because the man doing the ados told me he was the one to score it .

he didn’t let up anything about what he saw during the ados no matter how many sky questions I tried to ask 🤣
the only thing I got out of him was when I said that I do think she makes eye contact etc and he laughed and said yes but we are not looking at whether she made eye contact we are looking at how they make it.

then today - with the community paed she asked a series of questions which tbh my sister ( who was with me answered more than me haha ) the reason being is she disagreed with mt take on DD eye contact etc

the doctor then basically said they she had the ados results from the other day or the report from the guy, but she couldn’t feedback the details of it until he did - but she said going by her assessment today - the ados report she has seen and the school questionnaire that is was very likely she will diagnosed and they she didn’t see is being able to leave without

Sorry that posted to soon

that she couldn’t see how we could leave without one - like that it wasn’t even a hard choice for them and that she was fairly obviously autistic 🙈

I don't disagree. I just don't have blind faith in the assessment of autism.

@Willyoujustbequiet what is it that you don’t trust ?

the only thing I got out of him was when I said that I do think she makes eye contact etc and he laughed and said yes but we are not looking at whether she made eye contact we are looking at how they make it.

I can make eye contact, for durations lasting a fraction of a second, then I have to drop it. I often look past a person's head to one side, over their head, or at their feet. I sometimes wonder if I'm secretly a gorilla.

They got dc diagnosis wrong. It wasn't autism afterall. I knew deep down. It didn't fit. It was made to fit.

If they got it wrong with us, I can't imagine we are the only ones.

I don't trust borderline personality disorder (aka EUPD) diagnoses for the same reason. I knew that that wasn't "me". It turns out that a lot of autistic women are misdiagnosed with BPD.

I would never tell someone not to get a child assessed because laybeeelz, as we've seen on this thread, nor would I claim that BPD diagnoses are handed out like sweets. I might suggest asking for a second opinion and asking outright "are you sure it's not autism?".

The diagnostic process in adults relies heavily on subjective information and reported behaviours by the patient. Also on answers given during interview and behaviours exhibited by the person. Well documented behaviours and signs.

It's funny that MNHQ are acting like you're a victim when you come out with horrible shit like this.

It's more likely to be because trollhunting is disallowed and the people challenging wellhello24's derailing bullshit were inadvertently derailing the thread even further.

I've posted a couple of times about DD diagnosed ASD1 last year. Like you I was shocked, despite a previous assessment of anxiety. She's 15 now, at primary you'd have described her as a bit shy in class but popular with super close friends and early secondary you'd describe her as struggling a bit with the transition and anxious. 13/14 we had to move and the scaffolding she'd built around herself got stripped away and her world imploded. It was gut wrenching to watch. Roll on now she is doing good, not like she was back in our old home or her old school but she knows her boundaries, and she's started self advocating what she needs especially in test/exams. Huge step forward. The way I look at it is it was a bloody awful time but thank goodness we learnt everything now not when she heads to Uni by herself.

I agree it's good to read up on ASD with girls it's hugely different to the stereotype male experience. Also some great threads here, one recently about fussy eaters and food was like a light bulb moment and I'd have said before reading it that I was getting to grips with everything there was to know about teen girls and ASD 🙈

Also when you get the report read it through once for her and then a second read thinking about yourself and other family members. It was really enlightening to think about DDs findings in relation to myself!

I think you've probably adjusted and adapted to your daughters needs far more than you have realised over the years.

Years of SLT? An EHCP with full time 1:1 support? These things are like gold dust and most parents have to fight tooth and nail, often involving tribunals to get them in place (as you may have had to, I don't know).

Take the comment in context with the thread and her other posts. Stop being professionally offended. It’s clear to me in context of the conversation on here that she was making the point that where it seems a lot of people are jumping on the bandwagon it is fairly easy to do so because the diagnostic criteria is subjective

“Derailing bullshit?”

You’re getting on my nerves now.

Hard to take it in the context of their other posts when so many have been deleted.

@BigDogEnergy she was born very medically unwell, we have been lucky in a sense with our local authority in terms of support
she has
SLT, Occuoational Therapy and physio.

She was posting things that were unfounded (hence bullshit) and not actually relevant to the OP's situation (hence derailing). I stand by my description. If her posts were so reasonable, how come so many got deleted as being against guidelines?

You know I said "bullshit"?

it seems a lot of people are jumping on the bandwagon it is fairly easy to do so because the diagnostic criteria is subjective

A 2.5y waiting list is not "fairly easy".

Calling a historically underdiagnosed disabling condition a "bandwagon" is light years beyond offensive.

Sorry not read all the responses so assume others have said the same. Girls mask and mimic, it's a whole different process for the paeds and SLT to what we may do when we assess ourselves. Fir example my DD14 at the time of final assessment, I thought held good eye contact, but paed consultant said it's common for girls to mimic what they see other people doing, but they can tell it's a mimic. Also the play assessment, eg the book, no words just pictures, ASD child would describe what they've, another child with no ASD may be more descriptive around the story telling, broader, speculative and descriptive around the possible reasons for things on the picture eg instead of saying there's a boy crying, sitting on a chair, the back door is open and there's a broken base in the floor, a NT child may describe it as a boy is crying because his cat was sitting on his lap, and the back for blew open which scared the cat who jumped on the table, knocked the vase over and ran out the door so the boy is scared he'll get told off for losing the cat or breaking the vase
Young Sheldon season 2 episode 5 I think is the one where him and his twin Missy have very different approaches to this test .

But it’s not just 1 hour ADOS.

In my case it was an initial referral form which was long
3 hour session with family member looking at developmental history
developmentsl history form( v long)
2x 3 hour sessions
ADOS which was a lot longer than an hour

children would have input from school too

And it was 2 professionals who discussed everything with the diagnostic team in their team meetings.

TBH this sounds like a very robust assesment, I very much doubt all these professionals ( 2 X SLT, teacher and pead) are mistaken. Of course I am not aware of your DD's profile in terms of cognitive development/ SLT needs but even some of what you have reported here sounds very atypical for a 9/10 year old girl. " I will do a story, but on tuesday" - very few neurotypical girls would say that. I used to do this type of feedback and ask the " ADOS" questions to my DCs' freinds in the car when giving lists to reset what typical answers might be. NT 9 yo girls are incredibly social perceptive and are very, very good at inferring other's motivations and feelings. They also usually want to please adults in positions of authority, so very likely to comply with requests and also exhibit shared enjoyment. They actually want to help you complete the ADOS.