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

What's her complex life, do the assessors know all about it? If you look up the Coventry grid it shows how signs of autism and attachment disorders can often over lap

It's not your fault OP, just a couple of posters taking the chance to come out with the usual shite. I hope you have had some useful perspectives and good luck!

Weird how just after that poster stopped posting and many of their posts got deleted, this new one popped up to voraciously defend them.

Weird how just after that poster stopped posting and many of their posts got deleted, this new one popped up to voraciously defend them.

Indeed. And with such detailed knowledge of what the first poster thought and meant by their posts. Hopefully gone back to their cave never to return.

I don't think you have an up to date notion of what autism is / how it often presents in girls.
Either way YANBU - your feelings are valid.

@Unexpectedlysinglemum she was born with some pretty significant birth defects ( heart etc ) she didn’t come home until she was nearly 2 and has spent a lot of time in and out of hospital since
she also lost her dad.

Absolutely agree

Hi @InattentiveADHD , thank you for your response. We will always remove any posts reported to us that break our talk guidelines including ableist and derailing posts. As we're a post-moderated site, if no one reported those posts you mention, there's every chance we haven't seen them, but we are always happy to have a look. So if there are some posts you believe we have missed, please hit the report button and these will come straight through to us.

You have completely misunderstood my post. Or certainly your response suggests you've misunderstood it. Perhaps this quote from a pp says it better than I did:

"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."

I thought the MN post telling ND people off from defending themselves against ableism extremely inappropriate. The poster we were being told not to respond to had multiple posts deleted and kept posting despite that and despite the responses she was getting. And yet WE were the ones told not to respond to her?!? Think you have things round the wrong way.

This thread has continued in the same vein with the same old inaccurate, ignorant and misleading comments by multiple posters now but the only comment MN has is to tell the NDs off.

I quite like MNs "hands-off" moderation. So I don't think you should necessarily be weighing in on all of this. But what I do object to is being told off for defending ourselves against ignorance as if we are bullying!! That's really not ok.

@InattentiveADHD 👏👏👏

@ImaniMumsnet

Can I support @InattentiveADHD here.

ND posters on this thread have been sneered at for being "triggered" and "professionally offended" for challenging ableist assertions such as diagnoses are given out like sweets and adults pretend to be autistic to get a diagnosis. They have been told they are "living in a make-believe world", "obsessional", "defensive" and "not rational". Autistic people have been told to "educate yourself" and "consider counselling to look into why you are so easily offended and triggered".

It is unbelievably awful that your only presence on the thread has been to defend an ableist and offensive poster, it really looks like you condone that kind of behaviour.

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

Do you really think that the diagnostic professionals would be so easily fooled?

Believe me, autism is so much more than not conforming to social norms of behaviour. It's about being unable to understand social norms of behaviour. It's about experiencing sensory overload from stimuli that neurotypical people consider tolerable or even desirable, such as loud pubs. Neurotypical people don't walk around with noise-cancelling headphones on to keep traffic noise out. They don't walk around wearing sunglasses on a cloudy day. They don't have to wear sunglasses in the office. The majority of NTs have jobs, but only a minority of autists do.

We are not "all on the spectrum" and it's insulting to minimise autism in that way.

@Howbizarre22 and its historically under diagnosed but that is your OPINION

No, it's fact. https://www.autism.org.uk/advice-and-guidance/professional-practice/under-diagnosis-of-autism-in-england-a-population University College London carried out a study showing that autism is historically and currently under-diagnosed.

Stop pitting high-masking autists against low-masking autists. The failure of DWP to recognise autism as a spectrum condition and assess each disability benefits applicant as an individual is not the fault of high-masking autists seeking help.

What she initially said, that @MNHQ deleted, was that diagnoses were being handed out like sweets.

She then back-tracked to saying that a lot of people were self-diagnosing, some groundlessly or misinterpreting symptoms of something else.

What we are all objecting to is the first thing she said. Diagnoses are not handed out like sweets. Claiming that they are is a flat lie. She tried to bolster her opinion by implying that she had a relevant medical qualification when in fact she is a physio.

It's simply not true that mnhq delete disablist posts. I reported about 6 offensive posts yesterday. Only one appears to have been deleted.

So the excuse of not knowing because nobody had reported was all bullshit then? They have evidently looked and decided that ableism is fine and challenging it is not 😢
I get enough of this shit in daily life. MN is not for me.

Wow that is really bad, there were plenty to choose from.

There’s been an absolute explosion of people diagnosed with this in the past couple of years- you can’t deny that just a couple of years ago the diagnosis was quite rare to now it being absolutely everywhere. Unless youve been hiding under a rock.

This. Yes, our understanding of autism, particularly how it presents in girls, has improved. But its important to be aware that the diagnostic criteria of what constitutes autism have expanded significantly over the last 30 years. This means we now diagnose people who previously were not considered to be severely or specifically impaired enough to meet criteria for diagnosis.

No we simply have a better understanding of how autism can present( and yes thankfully now in women and girls)

The previous ICD-10 described autism as “A group of disorders characterized by qualitative abnormalities in reciprocal social interactions and in patterns of communication, and by a restricted, stereotyped, repetitive repertoire of interests and activities. These qualitative abnormalities are a pervasive feature of the individual's functioning in all situations".

Myself and my children would have been diagnosed then too.

Thankfully also the DSM-5 Manual criteria is now just “clearer and simpler than in the previous version of the DSM, and sensory behaviours are now included. This is useful as many autistic people have sensory differences which affect them on a day-to-day basis. It now includes 'specifiers' to indicate support needs and other factors that impact on the diagnosis.

Compare to dsm 3.

Honestly I'm not lying. Its factual to say that diagnostic criteria have been broadening. They have.

See also:
https://pubmed.ncbi.nlm.nih.gov/38273107/

Opinion is quite divided on autism diagnostic criteria at the moment, whether looking at DSM or ICD.

Hi OP, I think it is good that your DD has potentially got her diagnosis early and before secondary school because so many autistic girls seem fine until about 13 or 14 but then secondary school can be hell if they do not have adjustments in place. My DD was always anxious and phobic and had OCD so this was picked up but she didn’t get her official autism diagnosis until last September (14 years old). By this point her secondary school were assuming she had these needs anyway but her anxiety got so bad she couldn’t attend lessons a lot of the time. There were many many times I questioned what was going on with her throughout her life. People had asked me if she was autistic when she was much younger and I was kind of offended or surprised as she seemed shy and nervous but she was also happy and chatty and didn’t have the typical symptoms that I was aware of. Fast forward to her teens and she is actually very obviously autistic now. Hates noise, crowds, eye contact is poor, doesn’t speak much unless v comfortable at home, can’t cope with change, the list goes on. I am not sure why she was able to mask better as a younger child but there is probably a medical explanation. It does come as a shock though, so it is understandable that you are feeling how you are. But I wouldn’t worry about the ‘label’ per se because you and your DD can do what you want with the information. If she is coping well with life and school you may not need to reference it, but it will be a good thing if you reach a point where she does need some more support which is probably quite likely in the end.

I think my daughter is also ND OP. She's 14. Incredibly shy. Has anxiety, suffers from emetophobia, struggles with periods. She also displays some repetitive behaviours, she can often be found pacing her bedroom floor chucking a Teddy up and down. She has very specific interests and becomes obsessive. Hates change, she once shouted at her aunty for helping me change the lounge round. Can't cope with noise.

I approached school and they said the only thing they noticed was that she's very quiet. So basically if they referred her to the GP/paeds they'd reject it as she appears fine there as she's academically bright.

It's a minefield! I'm told the assesors who do the observations are very well trained and are looking for the signs of ASC that we wouldn't even notice. I would trust their opinions completely.