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

Agree with this. The poster might have an opinion different to some others, but she’s entitled to it whether people agree or not.

We challenged my son’s ADOS result as (at the time) he was in the process of being diagnosed with Tourette’s (also not now accurate!) He actually has HIE 2 (oxygen starvation at birth) which we have always been aware of - the traits and co-morbid presentations are to do with that rather than ASD. I have a brother with autism and another profoundly autistic child so it is very much in the family - but a diagnosis for my HIE son was not correct. There are lots of other reasons for neuro divergence so you do need to make sure you agree with the ADOS. It should be taken as one part of the diagnostic process along with SALT input, parental and school reports.

I also agree with previous posters that if it does not serve your child it may not always be best to correlate every diverse nuance of personality and behaviour with ASD. Will that description benefit her or you with an understanding or accommodation or is there a better description / understanding you can reach?

Perhaps apply a watchful waiting approach and reconsider in a few years?

The poster is posting ignorant comments that perpetuate stigma against autistic people, particularly perpetuating disbelief that autism diagnoses are necessary. Comments like hers literally make my life harder because they make it less likely that a colleague or service provider will believe me when I say that I'm autistic.

But you want me to "be kind". Bluntly, fuck that.

I started laughing when I read this because this was exactly how my dad responded to the forms I was filling in prior to my assessment.

This.

Your experience mirrors ours. I wish people wouldn't jump so quickly to autism as it isn't the only explanation for things and it can cause damage having an incorrect diagnosis.

I'm so glad we waited.

Reading back through the comments I don’t think she is perpetuating the stigma. She’s said she recognises it is a real and debilitating condition but thinks there are a lot of people self diagnosing and jumping on the bandwagon. She’s not saying everyone is. People seem to be very triggered and piling on this poster which I don’t think is fair at all. Everyone is entitled to make observations/have opinions?

I wish I'd had that "label" as a child. The reasonable adjustments and better understanding that that "label" would have got me from teachers and other pupils might have spared me the self-harm scars I have as an adult.

There are definitely habits in more than one of more children that I feel are maybe out of range for their age but I am also confident that as adults they will suffer no ill effects from it.

As one of those children, now an adult, let me assure you that you could not be more wrong if you tried.

From the number of posts deleted, I'd say that MNHQ agree with my assessment of this poster.

You didn't see the post that claimed that diagnoses were being handed out like sweets.

@VitoCorleoneOfMNMafia who on earth are you to tell me I am wrong? Based on what? Your own experience? Surprisingly yours will not be the same as everyone’s, I’m pretty sure I know MY children better than you do. I am sorry you went through a tough time as a child but please don’t think you can diagnose children based off one snippet of information because of your own experience.

In my experience the assessors for the ADDOS (especially NHS ones) definitely wouldn't diagnose a child whose parent doesn't see an issue if the child is borderline. So I would be open to learning more about autism in girls.

Another common aspect is if you are also on the spectrum you may seen certain traits as typical because you share the traits.

I’ve just seen other replies to my comment too, totally agree people seem extremely defensive based on their own struggles, which I suppose is understandable but not rational. To summarise, I have absolutely 0 problem with anyone with autism, nor would I have issue with one of my own children being diagnosed with autism. But really, Neurodivergent or autistic are basically about meeting a check list, they are just people at the end of the day… of course some more extreme examples than others. I’m sure my children may tick a few of those boxes, different ones each, my eldest 100% has ‘sensory issues.’ I am supporting her through these and am fairly confident as she grows up she will grow out of them. Of course if she doesn’t that is something we will face together as and when but because she has them now (age 6) I will not be taking her to the gp asking for them to ‘label’ her ND. You might not like it and claim it’s impossible but there are 100% normal children out there diagnosed by they’re over zealous parents.

I wasn't talking about your children. You made a comment about children in general and I responded to it.

There are definitely habits in more than one of more children [children in general, there's no "my" here] that I feel are maybe out of range for their age but I am also confident that as adults they will suffer no ill effects from it.

As one of those children [this makes no sense if you are talking about your children because you're not my mother], now an adult, let me assure you that you could not be more wrong if you tried.

If you were talking about your children and made a typo that obscured your meaning, I suggest that you let the trained professionals do their jobs.

If a child had breathing that was out of range for age and a bit of wheezing, you wouldn't blithely state "I am also confident that as adults they will suffer no ill effects from it" and object to "labels" if a pulmonologist diagnosed said child with asthma.

When people treat an autism diagnosis given by a medical professional as something that they can opt their autistic child out of, they show that they don't think of autism as a real, disabling condition. Erasing someone's diagnosed disabling condition like that is textbook ablism.

Parents can't make diagnoses, only medical professionals can. I am very much against people claiming to have a condition without a formal diagnosis. They can say that they suspect that they have a condition or are awaiting assessment for it, but they shouldn't claim a definitive diagnosis until they actually get one because they might have something else instead.

"how does someone in 1 hour long ADOS assessments see more than I have in 10 years ??"

They know what they are looking for.

@VitoCorleoneOfMNMafia yes I meant my children. I didn’t realise the typo and would never make these assumptions about anyone else’s children.

Yes I do agree with the whole self diagnosis could be an issue

I was surprised when I reached out to a friend who speaks openly about her and her daughters autism that I discovered that actually the daughter has the ados twice and assessments twice and was deemed not autistic by the NHS but she disagrees and says she is

but in terms of this thread I don’t see the correlation as I am not diagnosing my daughter
she has been seen by 2 SLT, had a school questionnaire , a community Paed assesment and an ADOS.

After all those professionals, if DD is diagnosed, it's very unlikely to be a mistake.

Don't think of a diagnosis as a label or a burden. Think of it as a window that you can look through to understand your DD better and a key to unlock reasonable adjustments.

Your DD is not changed by being diagnosed, she will be exactly the same as she was the previous day.

actually the daughter has the ados twice and assessments twice and was deemed not autistic by the NHS but she disagrees and says she is

FFS. 😡Don't worry about being like this charlatan, you're clearly anything but.

Also not all labels have to be negative. DS2 is quite open and positive about being autistic. And he was diagnosed at 3. He is noticeably different from first meeting.

And they can make mistakes too.

I don't necessarily trust professionals either.
It's not foolproof is it

From what I can tell regarding the post about some children having a “ quirk “ or one issue and then being pushed in to an autism diagnoses ( someone can correct me if I am wrong as I literally only researched this week ) but is there not a set guideline they have to follow in terms of having issues in 3 areas, and also being seen in 2 different settings ?
so say for instance If a child had sensory issues with clothes or sound but didn’t in the communication settings they wouldn’t reach guidelines ?

That's why, even for the adult assessment, there's multiple professionals involved and they have to agree.

OP said "she [DD] has been seen by 2 SLT, had a school questionnaire , a community Paed assesment and an ADOS".

Yeh she has a SLT anyway as she is still on speech and language from 2 til now. They wrote their report for the pre screening.
then a diff SLT went in to school to observe

then she had ados and then the community paed development screening thing

I took the ADOS at 15 and got diagnosed, something my mum had first pushed for when I was 5. Obviously there's not much I can say on your DD besides the fact that it is indeed a wide spectrum, especially amongst girls who mask. Nobody at school raised any concern about me until I was in my mid-teens, because it was only when I started secondary that my masking and social ability started to slip behind that of my peers. Passivity is an interesting one- it's something I've struggled with due to how difficult I find some social situations, meaning I naturally avoid as many of those less standard interactions as I can. On the subject of eye-contact, I have some autistic friends who avoid it much like I do, but I have other autistic friends who make intense eye-contact instead; it's the deviation from normativity which defines the symptom, not necessarily how deviates.

I hope whatever the outcome that your DD gets any support that she needs! If she is autistic then a diagnosis can make a huge difference in understanding oneself and in turn improving self-esteem. If she isn't then you still have a good starting point having done the ADOS, which will likely identify her skills and strengths, something you can use to build her confidence. A good parent is an inquisitive one, and one who uses that to ensure the best for their child; which is to say, it sounds like you're doing a fantastic job 😊

Yes I wasn't talking about the OP in particular. DC was seen by numerous professionals. They still got it wrong.