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

I think it’s always very hard for parents who were not expecting diagnosis rather than those actively seeking one. It seems that your child has come at autism diagnosis sideways (like mine did).

it is a little confusing because it appears that your little girl also has some other things going on, so diagnosis might not be so shocking in that context - birth trauma is correlated with higher instances of autism, especially any oxygen starvation.

my own child’s diagnosis was a complete shock, but there is something about him that is incredibly obvious to people who work with autistic kids. As he has grown it has become more obvious to me too. He has big issues with disregulation but he makes excellent eye contact - sometimes a bit too good. He’s also on the verge of being a 9yo bore unfortunately - the mansplaining was cute when he was little.

it’s funny because ordinarily I would say that autism diagnosis is key to getting support for a child, but you already have EHCP etc so maybe this is why you don’t feel relieved; maybe it won’t materially change what she gets.

Sorry shocking typos. When giving lifts to DCs' friends and socially perceptive.

Telling someone their opinion is “bullshit” just because it differs to yours could also be considered “light years beyond offensive.”

The reason it’s a now 2.5 year waiting list seems mainly because of the volume of people now being referred for assessment not because it’s a particularly difficult assessment. What that poster was meaning is that if someone wanted to be diagnosed, it wouldn’t be difficult as there aren’t any objective markers (ie scan results, blood tests)- markers are either entirely subjective or could be mimicked or misdiagnosed . Yes that’s troubling for people with genuine diagnosis and belittiles their experience and condition but it seems she was saying there is actually scope for misdiagnosis especially where someone is keen to be diagnosed.

You say the other poster made “unfounded” comments because their experience and opinion of this differs to yours where you feel it’s so difficult to be diagnosed and its historically under diagnosed but that is your OPINION and your experience. There are other posters too on this thread saying they or their child was misdiagnosed, or that on some occasions they received a diagnosis very quickly- so just because you have your experience of being diagnosed doesn’t mean it is the way it is for everyone.
Their opinion is no more “unfounded “ than yours . Yet You speak like you know absolutely everything about this and are shutting down anyone that has a different opinion, calling it “bullshit” and you are “offended.”

Sorry you are coming across incredibly defensive, aggressive and obsessional about this topic to the point that you know best and any differing opinions or experiences don’t count.

Autism is being diagnosed more. The diagnosis has increased in sensitivity. Does anyone elso wonder if, in the future, it will become known, that every single person is on the spectrum to some degree?

Frankly no, there is a fairly fairly robust cut off, it's a bit like saying could we all be diagnosed left handed or blue eyed ? ( all less common varriants of the " default"). As an experiment and a teaching exercise an ADOS was performed on my fairly neurotypical DD aged 8. She picked up a single point ( possible sensory interest FWIW) nothiing else. NT people will simply not score on the ADOS.

That’s what it seems like. That old saying springs to mind “what is normal anyway?” Are we not all just a little different yet society has forced us into a box of what “normal” social behaviour should look like where some of us are better at conforming to this than others? Are people being diagnosed as ND because they don’t meet social norms of behaviour?

I took my youngest to the autism assesment because the school had had in various teams offering him support at school and despite me feeling the school was wrong I still had to take him for assessment..,in assessment I told them a huge long story about the school getting their own back , because of the behaviour of my eldest with autism,so I felt school were judging youngest by eldest behaviour,
I told them youngest had no behaviour issues at home or school ,and the whole thing was rediculous
He happily went of to be assessed with out me
Weeks later we got a very detailed report explaining exactly how they see his autism and a higher score than the eldest
Was a huge shock ...turns out we never saw it , because he was the same as us
10 years later I'm officially diagnosed autistic and ADHD
Now I look back and I can see his and my autism clearly
But I thought autism was how my eldest was , violent aggressive,smearing .
My youngest did none of that ,
Obviously I just didn't understand autism
And actually I've found,since I was diagnosed myself,a lot of people simply don't understand autism..the media portrays autism in the extreme...the amount of people who have told me I don't look autistic...
Probably because I'm not a 5 year old boy.

how does someone in 1 hour long ADOS assessments see more than I have in 10 years ??
@Laughterbutchaos21 Well, one explanation could be that her autistic traits that are obvious to other people seem normal to you because maybe you/close family members are the same?

"Are people being diagnosed as ND because they don’t meet social norms of behaviour?"

They are being diagnosed because they display the diagnostic criteria for a diagnosis. That means that they have "persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” (this includes sensory behaviour), present since early childhood, to the extent that these “limit and impair everyday functioning”.

The ADOS is designed to pick up those features.

Have you actually seen the report.

Have you also read the background on what they test and why? Because you sound like you don't know.

No you don't need to fulfill all parts, you can have a very spiky profile, ie massive in some parts, nothing in others.

Years ago They tested theory of mind, using the Sally-Anne-test. They also tested if the child has the ability to role play and make believe, can you make up a story, pretend you are someone else, a waitress or an astronaut.

Role play and make believe doesn’t mean a lot within a whole diagnosis. I lived in a make believe world, my daughter in a role play world and my son has never played with any toys and just couldn’t understand role play never taking part in it ever. We all have an autism diagnosis.

Think though we now know that causality runs the opposite way, and autistic adults on average become parents at a later age, rather than becoming a parent at a later age being implicated in 'causing' autism in offspring?

This thread is so depressing. People despising labels and it's just a few quirks and it's so easy to get a diagnosis and suggesting that adults are reading up on the typical behaviours and then feigning autism to get one. And yet it's allowed to continue, with MNHQ popping up briefly to tell off ND posters when they challenge someone making ableist and offensive remarks. I didn't realise MN was such an unfriendly forum for the neurodivergent.

OP, when you read the report, you may well have a eureka moment and learn a lot about your DC's autism. Or you may think the professionals have got it all wrong, in which case you should challenge it.

The reality is that DC are often less obviously autistic at home with their family, who are used to their behaviour, or who make adjustments without realising so that the DC is comfortable, or who may be ND themselves. Her diagnosis may not make much difference to her now but could be invaluable in future if/when she starts to struggle. So keep it up your sleeve is my advice.

I think you should be concerned that a poster is trying to leverage their role 'in the medical profession' to give out misleading and abelist information about neurodisabilities. Generally I think MN should be giving our warnings where people are invoking medical expertise that bona fides have not been established.

^this

This is insensitive to the profound challenges faced by autistic people living in a world organised around the needs and preferences of NT people and the exclusion it perpetuates. Only 10% of autistic adults of working age are working full time and only 30% are working at all. Have a think about those life chances and reflect on whether all differences are equal?

You realise this is because until very recently, all diagnostic criteria for ADHD/ASD was based on how these conditions present in boys?

When people bothered to study girls and women they realised that ND females present very differently to male, and there are thousands and thousands of undiagnosed women and girls struggling through life.

But sure, people are just making it up.

I'm one of the ones who will suggest ADHD or ASD as a possible reason why someone is struggling with for example, forgetfulness (along with other symptoms) because my diagnosis has transformed my life. My diagnosis came about because someone talked to me about ADHD and it suddenly made sense. Before that, i thought it was something that only affected little boys and that because I'm not physically hyperactive i couldn't possibly be.

If someone goes away and reads about it and thinks "no, that doesn't fit" then no harm has been done. But a little bit more awareness of what neurodivergency is has been spread by me posting it. If that person reads up, or someone else who reads my suggestion reads up and thinks they might be ND, and they are then able to implement some coping mechanisms to help them, what bloody difference does it make to you? Why would you care? Do you get upset if more people talk about and get diagnosed with cancer or arthritis? Or is it just neurodivergency you object to?

It's not like anyone's handing out free goody bags for being ND! people getting diagnosed or self diagnosing (which they have to because the waiting lists are years and years long!) makes no difference to you at all, but might make a world of difference to them.

The Sally-Ann test isn't always reliable though. DD2 'passed' the SA test because she said Sally would look in her bag. But she had missed the entire story and had just used logic that if Sally was looking for something of hers, she would look in her bag. She had dismissed the point that the naughty bird had flown off with the watch as irrelevant detail.

I thought Mumsnet always told us to educate and respond to people because you won't ban for being persistently disablist.

My dd was diagnosed young but had to be re diagnosed age 11 because the nhs don't accept USA medical reports anyway there was multiple parts to the diagnosis, a school report, an assessment which a psychiatrist and they interviewed me too because that formed part of the judgement - they had to show the behaviour in 2 settings (so school and home) to meet the criteria.

More recently my dsd had an adult adhd assessment and again her parents needed to submit written reports on her childhood, they don't accept just what a person presents like in a slightly unnerving appointment!

Possibly, DN is autistic and db was over 40 when he was born, and IVF

Is there any links with IVF as well

its very hard sometimes to see things in your own child because you accept them for the amazing, unique being they are.

@TheSnowyOwl

Unfortunately the trend now for diagnosis based on mild traits is devaluing and belittling to a certain extent those with profound difficulties as result of their autism. My DD's autism is moderate I suppose, she struggles to work, forming friendships is more challenging, she certainly can't read the room at all, can be a grown up stroppy toddler basically - she has made progress in many ways but when she is rejected for support because "she can work" benefits don't recognise her difficulties now whereas even 5 years ago it wasn't a problem. I state her issues and she is told "others work" they haven't seen her problems (50 years ago she would have been institutionalised I suspect) so yes these "mild" cases annoy me

Firstly my post is speculative- I’v put question marks as I’m just speculating. It might seem
insensitive to you but I’m just putting a perspective out there for consideration and discussion.
Secondly- you are making pretty much the same point im making! You are saying that the world is organised around the needs of what is considered socially “normal “ behaviours and thinking patterns. That’s what I’m saying! There are social norms like society is trying to fit people into a box regarding what is considered “normal” behaviour and anyone who deviates from this is considered different and atypical will inevitably struggle and find fitting in with these norms challenging. Yet this is unfair. My point is why should not fitting in with societal “norms” be considered a condition and given a label, why can’t society just be more set up for and excepting/inclusive of peoples differences instead of having very narrow rules about what is “normal.”

This. So many ‘mild’ cases in recent years. Definitely a recent trend but a lot of posters on here seem to be denying this observation and the fact it does undermine genuine profound difficulties.