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

@wellhello24 I agree, it seems a lot more common now... my own two children have turned out to have ASD. No one else in my family had it, and we don't think my husband's family either. I personally think there's something going on that's causing this. Perhaps the fact that it's more common in children of older parents and many of us are that these days?

Yes it’s my observation and a lot of people I know. This opinion is censored online it seems but there’s a lot clicking ‘thanks’ to what I’m saying so I’m clearly not the only one. I’m not here to offend anyone I’m not saying these disorders don’t exist of course they do!! They can be very sever I appreciate that. But the minor traits described when one self diagnoses can be explained by anxiety disorders. it’s an observation. It just seems that so so many people have these conditions these days that it seems more unusual to not have adhd

But if that's what the professionals have diagnosed? I'm more inclined to trust people who specialise in this area rather than assuming everyone has a "label"

I do agree with you on self diagnosis though. I'm adamant my DD shows some ASC traits but as she is academically bright it's brushed off as shyness/anxiety. I'd never self diagnose my children.

You don’t get a diagnosis for a few qwerks. You keep posting inaccurate and quite ignorant posts.

Why do we need to label someone who is different? We are all unique that’s what us great about being human

Because autism is not just "different", it's a disability and many people who have it need support to function successfully in the world. (Which they are not entitled to without a diagnosis.)

OP I was diagnosed a few years ago as an adult and I was worried that I might have learned to be too good at masking, I have a family, am successful in my career and can do eye contact reasonably well (with a continuous internal monologue of "do some eye contact, you're looking away too much! Now you're staring, they're going to think you're weird!" etc etc). I thought I might be autistic but not get a diagnosis because I am good at hiding it. I explained that in the chat before the tests began and the nurse basically said, don't worry, most people discover that they are a lot more autistic than they thought. And so it proved - there were so many traits they highlighted that I hadn't noticed, or didn't realise were linked. It's a very holistic process, they know what they're doing and will not diagnose unless your DD meets the criteria.

As a PP said, it may not mean much now, but it will help your DD to understand herself, not beat herself up for 'failings' that aren't her fault, and it could be invaluable later on when life becomes more stressful at the same time as she's becoming more independent. My diagnosis has improved my life along with DH's and our DCs'.

Do you actually know how you get a diagnosis?

There you go-

“The DSM-5 Manual defines autism spectrum disorder as “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”.

Now bore off.

Oh and I self diagnosed myself and my children before our NHS diagnoses. Not my fault we were missed for so long and waiting list times are what they are. It was blatantly obvious and I was 100% correct.

Hoards of people? Epic scale? Source?
There's been a backlog of referrals to wade through because of Covid.
To the extent that some authorities have deliberately changed assessment criteria to bring down the waiting lists, which are years long.
The amount of hoops to jump through is onerous and overwhelming.
If you have actual figures of new diagnoses given out/confirmations of autism in young people, in the last two years then please share them.
Whilst I can find governmental reports on waiting times, and newspaper reports that referrals have increased, a referral does not equate to a diagnosis.
119,821 pupils in England had ASD in a 2017 census, 0.19% more than suggested previously. 700 000 adults and children according to the government - 1% of the population.
Where, as a medical person, is your source that actual diagnoses have increased on an epic scale? I don't mean referrals, I mean actual diagnoses.

Perhaps that’s what I’m noticing then- a boom in people self diagnosing without an official diagnosis. A lot of people saying they have adhd where they actually haven’t yet been diagnosed but they are recognising a couple of the traits that can be very interchangeable with general
or social anxiety disorders.

What job in medicine/health do you do?

@wellhello24

As a medical professional (dubious), you surely know the difference between self diagnosis/labelling/loose terminology versus "diagnoses being handed out like sweets"...

And in terms of interchangeable/common traits...yes, absolutely. Which the robust, multifaceted assessment process is there to work out.

You're coming across as more of a twit each time you post.

"Working in the medical profession" presumably not a role with a recognised qualification then? Otherwise you'd say doctor/psychologist/nurse/occupational therapist

My money is on GP receptionist

Physiotherapist in mental health for the past 20 years.

What's the relevance of your view on self diagnosis of adhd on quirks got to do with a thread about a child going through the medical diagnosis who has a question mark over whether she will manage mainstream though

So literally zero expertise in autism or ADHD then.

So you are saying the multiple qualified and experienced medical professions who work together for a diagnosis to be reached are all systematically and epically failing at their job and misdiagnosing?

I've worked in mental health for 10 years, I'm not remotely medically qualified though. If you are in a patient facing role then I feel very sorry for any neurodivergent patients that you may come into contact with given the opinions you've shared here

And @wellhello24 how many of these epic numbers have you then assessed (with your equally relevant and experienced expertise) to confirm that the numbers are wrong and which medical journal can we read up on your (peer reviewed) findings?

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. 🤔🤔🤔

See I can honestly say this was not based on what her parent said. The opposite the dr said I said the opposite to what her reports from others did or not the opposite but downplayed hugely.
I don’t think I said anything that wasn’t truthful.

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. 🤔🤔🤔
*
Well yes - isn't that the point!!*

And a lengthy session with a family member able to answer questions about early childhood and an ADOS assessment.

Your point being?

My mum was adamant I wasn't autistic, I had to chase my own diagnosis as an adult and the assessor was very clear that I had very obvious autism, ADHD and bonus OCD.

I am very confident she is also autistic. Although she did the same thing when school raised concerns over my reading, again, when I chased my own diagnosis in high school I was diagnosed with dyslexia and am in the bottom 2% for reading speed.

So I csn believe that mums don't always see this stuff