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

@Laughterbutchaos21 you might be reassured by the ADOS report. I, too, sat in on DD2's assessment. I was still fascinated by the observations that they made about the activities that I had watched. I remember cringing slightly when the SaLT tried to engage DD2 by telling her about her naughty dog. Even though DD2 adores dogs, she just said, "Mmm". The SaLT got more and more animated about her naughty dog and DD2 just continued to say "Mmm". It was excruciatingly painful to watch!

When DD1 had hers, I heard her abruptly say, "You're late! I don't like waiting!", as soon as they walked in. No inhibitions there.

OP I know it's tough but get the bit of paper confirming the diagnosis. It's a long way away but you need that bit of paper when negotiating special provision for extra time etc at GCSES and A Levels. Trust me on this, it's really important. I wish you well

I was genuinely surprised when my daughter got her ASD diagnosis. We always knew she was quiet and a bit shy at school, but just thought that was just the way she was. I am quite the introvert so didn’t think too much of it.
It was during senior school that the anxiety began to kick in. She’s a bright kid, so did her work & flew under the radar. During lockdown her anxiety hit the roof and we went through a hell of a lot to try and keep her safe. She hated the ados assessment as thought she got it all ‘wrong’
Looking at her now, it is obvious the amount of work she puts in on a daily basis to ‘fit in’ without giving in to the anxiety - she would come home from college & go straight to bed as holding it all together all day was exhausting.
I can now see when things are becoming too much and adapt accordingly. I never realised how much of our ‘normal’ life was quieter, less busy or noisy just generally calm as she grew up. Looking back now, with her diagnosis it makes so much more sense.
good luck with the outcome

My DS wasn't diagnosed with ASD/ADHD until he was 13. His primary school refused to believe anything was wrong, despite my concerns. Luckily his secondary school was much more with-it and got the ball rolling for him to be evaluated. It was far from an easy process. So many tests and appointments... And when I read the final diagnostic report, I cried. Not out of sadness, but out of shock at how accurate of a portrayal it was of my son--some of it based on only having spent an hour with him in the ADOS. They GOT him in a way nobody else could.

So trust the professionals. Trust the process. They know their stuff. And they don't just hand diagnoses out to anyone.

Why is your opinion more worthy than hers though? I can see it’s an unpopular point of view and maybe not accurate but I don’t think her comments were at all ableist or nasty?

@Laughterbutchaos21 You also have to realise that these people are experts. They diagnose children for a living.
My mom does the same. She says she can smell them!! LOL
Basically, they know what they are looking for, when you might not even realise what that is!
They wont give out an autism diagnosis based on nothing! If they do diagnose her, it is because they have seen the traits!

Dont beat yourself up about it, though! It happens a lot, particularly with girls!

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.

If they are autistic, you wouldn't necessarily know though. Autistic people often appear to manage perfectly well, but it doesn't mean they're not suffering ill effects.

Nobody noticed I was autistic as a child, although looking back now I can tick off just about the whole list of things to look out for in autistic girls. There are lots of mums on this thread saying they didn't realise, even those with an older ND child.

Not everyone with autism needs practical support, but there can be huge value in understanding yourself and accepting that you aren't just shit at things. And it helps people around you too.

I really hope your kids are not autistic if they have a mum who despises the label.

To be fair if ados and professionals agree then she's most likely autistic. My schools didn't agree despite citing her difficulties with her peers and selective mutism to me, they claimed no issue. Her older brother was unable to complete ados due to his massive anxiety issues by the time we actually got hating far (we'd been referred before and turned away). He's now on long term anxiety medication and she's ended up with eating issues and no GCSEs. Honestly. Trust the doctors. They won't diagnose without good cause....many have to fight to be listened to.

It's better to be kind than to be right...not when misinformation like "diagnoses are being handed out like confetti" is strewn about with nothing to back it up.
It is bloody insulting to the parents on here who have spent years advocating for their children, it is insulting to adults on here who have pursued a late diagnosis, it doesn't help the OP as it isn't based on any facts or data and it's insulting to the psychologists/professionals that do ADOS/DISCO for a living.
The poster doubled down on the confetti comment. It was deleted twice.
I asked for sources. They gave none. I asked for data. They had none.
Everyone is entitled to an opinion but when it comes to SEN provision in this country, facts matter.

Wow, a few folks on this thread clearly know sweet FA about how autism can present, especially in girls. I genuinely think a lot of people truly still believe that autism = Rain Man 🙄

This.

If you know you could get your child diagnosed then I suggest maybe you’re putting in your head in the sand about any diagnosis they may need. I know children who’ve been borderline for a number of neurodivergencies who did not ultimately meet the criteria. I know many many more who’s obvious neurodivergencies were not picked up by medical/educational professions.

imagine for example the allegory of the ugly duckling which we all were taught in depth at school. About how the ugly duckling was bullied/picked on for their looks etc but it turns out it wasn’t a duck after all! It was a swan! I don’t think anyone learns that story and says we shouldn’t be labelling birds and if ugly birds live in a flock of pretty ones they shouldn’t be labelled . No - the moral is not to compare who you are with people who you are not. You find your own flock. We’re all beautiful in our own way…. But there’s no moral of the story if the end is it’s just a fucking ugly bird.

labels of adhd, autism, ocd, dyslexia help with

1. accessing applicable treatment. Occupational therapy, physio, SALT
2. additional support in education, eg extra time, quiet space
3. accessing medication if appropriate
4. self advocacy
5. an understanding why traditional methods don’t work
6. more patience from educational/medical staff
7. helping access strategies online and from informed professionals that will help people with shared needs
8. help finding a persons ‘tribe’
9. an understanding of where and how they fit into the world

labels my arse.

I have a clear memory of wondering how people didn't know their kids had additional needs until later. Your kids are the only ones you have a detailed knowledge of, so whatever child you have is normal for you.

For me, I never noticed anything with ds2 eye contact, as he does with me. Only friends, family and his teachers have confirmed he doesn't with them. Ds1 is very chatty, so I was really surprised when he was confirmed as autistic. Only then I thought more and he is very animated, but only so he can tell the other person all about his interest. Their participation in conversation is entirely optional to him, althoughhe does love it if they have the same interest too. He is also adhd, so it explains why he seemed less clearly autistic.

Give it some time and think things through. It took me a few months with ds1 to really believe it. Have been able to make some changes since to support them more, but school is the big issue that causes them so much distress.

If they're not ableist or nasty, why were most of them deleted?

It's bad enough having to put up with those kind of comments on a regular basis without also being gaslit about it.

There was an “absolute explosion” of left-handed people too when people finally started to realise that left-handedness wasn’t a terrible affliction but something that affected a significant minority of the population. Autism isn’t necessarily good or bad - it just is. We’ve always had neurodivergent folk among us, it’s just that now we know more about how this can present, we can recognize and name it. The stigma anyone attaches to this “label” is on them, not us.

I love my “label” - it’s meant I finally have an explanation for the years of depression/anxiety/overstimulation/burnout I never fully understood. It’s meant I can now accept myself, obtain the adjustments I need to do my job well, pace myself and advocate for myself and my also-autistic DC (yes, the label is also hereditary! Who knew?!)

Some people could honestly just do with reading a book or two once in a while.

I wish and I wish and I wish I'd started the process with ds years ago. He stimmed from an early age, but he seemed fine. In high school it's all fallen apart- to the extent he ran away last year (we found him). Cahms aren't interested, because he hasn't tried to kill himself yet. They phoned me to tell me. Running away and playing with faeces isn't a mental health issue. I know a fair bit about autism, due to my job, but I'm also his mum, so it's blurred. We've been in various systems for nearly a year, but still being bounced around. I've told him he may be autistic and I try to deal with his various....quirks.. accordingly. But he's struggling more and more and also exhibits signs of depression.

Dd also presented more obviously as a small child, but is queen of masking.

@Howbizarre22 Possibly because I actually have ADHD and have been through a full assessment. I also have an autistic child with ADHD so have seen the full assessment for that and have experience of raising a child with those conditions.

The poster in question is making multiple posts with ignorant and uninformed "opinions" trying to make out that they've have some sort of relevant medical background when it turns out they are a physiotherapist. So no more qualified than any Joe Bloggs on the street. On almost every thread about ADHD or autism, whether relevant or not, there are these uniformed and frankly harmful comments spreading misinformation (while purporting to be an expert) and adding to stigma. That's what makes them ableist.

NDs are starting to really challenge these posters thankfully and push back. What's made me more cross than the poster tbh is MN stepping in to imply we are somehow bullying the OP for starting to stand up against this ignorance and misinformation.

There was an absolute explosion of people diagnosed with septicaemia when doctors figured out that those weird fevers that killed people were caused by bacteria in the bloodstream.

Improvements in understanding autism have led to more autism diagnoses. This doesn't mean that people are being diagnosed wrongly now, it means that they were being missed, with sometimes lethal consequences.

There's an autism cluster in my dad's family. There have also been several suicides in my dad's family. This is not a coincidence.

Don't feel guilty, you weren't to know because you are not a child psychologist.

It's better to know early so that you can start getting support in place than to not know.

"Labels" of adhd, autism, ocd, dyslexia help with

1. accessing applicable treatment. Occupational therapy, physio, SALT
2. additional support in education, eg extra time, quiet space
3. accessing medication if appropriate
4. self advocacy
5. an understanding why traditional methods don’t work
6. more patience from educational/medical staff
7. helping access strategies online and from informed professionals that will help people with shared needs
8. help finding a persons ‘tribe’
9. an understanding of where and how they fit into the world

This

So you're accusing us of lying to get a diagnosis?

My Mum was interviewed as part of my assessment process to get her take on my upbringing. Are you accusing her of lying too?

My pleasure😀 And thank you too ❤️❤️❤️

Love this idea that we’re all spending thousands of pounds or staying on a waiting list for half a decade just to get a trendy label! Multiple professionals (doctors, teachers, SENCOs, EPs…) are also in on it too - all making up evidence just so us evil SEND parents can label our kids 🤪

I have had more understanding in the 18m since my diagnosis than in my whole life beforehand.

Undiagnosed autists do not get "celebrated for being different", they get:

• bullied at school.
• fired for failing to conform to workplace norms.
• depressed because they keep blaming themselves for not fitting in.
• sexually assaulted because they don't recognise warning flag behaviours and so don't avoid dangerous men.

The "label" is life-changing in a good way.

You know your child best. Just keep her diagnosis in your back pocket until you get to a point where it’s needed. She isn’t labelled for the rest of her life, it isn’t her identity. It’s just a condition she has shown traits of having.