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

It's a possibility, but girls are better at mimicking and masking.

Is there a possibility that you think your DD is neurotypical because her behaviour seems "normal" to you because you're also neurodivergent? I have heard of quite a few cases where parents are surprised by a diagnosis for this reason.

She won't be diagnosed on the ADOS alone. It's a combination of the reports and the ADOS score.

Autism and shyness/nerves do not present the same way.

I would think about whether you don't see the traits at home because you've created an environment that meets her needs - perhaps quiet, calm, regular, with few demands, where she can have plenty of time to pursue her interests? What is she like with friends and outside the home?

Of course, if you disagree when you read the report, you can ask for a second opinion.

Have you had a look into the differences between autism in boys and girls? Your comment about conversations and eye contact make me wonder if you're more familiar with the stereotypical male presentation.

As you're aware, it's a multidisciplinary approach so it's not just one person's opinion that counts, they all need to be in agreement for a diagnosis to be given.

Lastly, often the parents who don't realise their autistic children are different are often autistic themselves! My husband was diagnosed when the penny dropped for him when our son was diagnosed. I honestly don't know how it came as such a surprise to him!

Fuck off are they. It takes years and usually a huge amount of struggle to get even clear cut cases a diagnosis.

It took me a three year wait list, several appointments and a lot of emotionally draining self reflection to get my diagnosis, including my daughter being interviewed to corroborate my responses and hearing some difficult reflections about how embarrassing she can find me.

My son has an autism spectrum condition and was diagnosed with ADHD as an adult. He waited about a year for his initial diagnosis. He was suicidal and self harming. ADHD diagnosis came three years later. The medicine he takes to regulate his ADHD has been unavailable since July 2023. There are lengthy waitlists to even get through the door of CAMHS, let alone get a diagnosis.

Autism often shows itself as anxiety in girls. Have you read some of the information written by the Autistic Girls Network as autism presents very differently in girls and the extremes can also be opposing, yet still different to many boys.

Deapite the ignorant comment above, a diagnosis isn’t given out like sweets. The people assessing your daughter will have plenty of experience and it’s likely school waited until they were fairly certain before broaching it with you, as it can be a difficult conversation to have with parents.

Yes!! The only visible signs of my teenage DD's autism to the vast majority of people is shyness/anxiety.

3 years … SALT assessment, Ed Psych, School reports, several CAMHS appointments and a panel with 2 consultants psychiatrists on ..

yea.. handing them out like sweets

Oh - and my DD was only diagnosed less than a year ago. Until about 2 years ago none of us were any the wiser, including most of the staff at her primary! It was thanks to the eagle eyed SENCO lead. But it all makes so much sense now.

I felt very ambivalent about my son's diagnosis. I didn't, ultimately, see it as a source of insight about him. (How could it be, when it covers such an astonishingly wide range of people these days?) I saw it as a bureaucratic pathway for (possibly) getting him some additional support.
I think it has been massively too enlarged to be able to say anything meaningful about individuals.
It makes me angry that something that was potentially a useful resource for understanding people has been so diluted.
If it results in additional resources for your DD, perhaps it will be of some value. But don't regard it as anything that constitutes a label or identity for her. Unless you have a strong gut feeling that it does somehow capture something meaningful about her.

Sorry I didn’t mean for it to come across that I meant they were giving the diagnosis to easy - it’s just come as a bit of a shock to me
the reason I raised the eye contact issue is because that’s one of the things that was raised - she doesn’t give eye contact correctly.

Oh please. What do you know? It is actually extremely difficult to get a diagnosis of either of these conditions. There is a far greater awareness these days, thank God, but still a huge stigma, as you have proven. Do fuck off and educate yourself if you're so bothered.

That's basically what I wanted to say.

OP, I can recommend a book called 'Aspergirls' by Rudy Simone which might help you recognise some traits in your daughter.

I have two autistic daughters. One can maintain eye contact for as long as she can stay awake whilst the other one cleverly avoids it but it took us many years to realise it. Once we did it was obvious that she would pretend to be distracted by something or else alternate between looking at the eyes, the bridge or the nose and forehead. If she feels she needs to, she can maintain eye contact but she struggles to also converse as if it too much effort to do both simultaneously.

I was going to say this.

It took my parents a long time to realise I was neuro-diverse and not "just like your dad". Who turned out to also be autistic, lol

It's far more likely she won't be diagnosed when she should be than the other way round.

Thing is as parents we learn to work round what our dc react to. We're also not dealing with 30 at a time, so can manage to do it.
With ds, there were so many things we worked round and were so used to it, we didn't really think about it.
Going to a beach meant choosing one he could sit off the sand and watch, because he doesn't like sand (sensory issues). Making sure he wasn't in soft play for more than 45 minutes (otherwise he got over stimulated). Giving him a 10 minute warning of change (followed by 5 minute, 2 minute, 1 minutes). Removing labels. Wearing shorts (even in winter snow). Making sure clean sheets weren't crisp. Washing new clothes before wearing. etc.
All these things and more were just his little quirks that I did without thinking - just part of him, and very sweet really... But they're not. They were part of his ASD. And a lot of them it was only when talking to the assessor, I realised there was more to it. He's my #3, and I've looked after many other dc in my time.
It's easy to miss when you're there all the time.

Have you ever wanted her to be assessed and diagnosed?

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. A lot of people “self-diagnosing” too which is not ok. And anytime anyone mentions they have a certain trait for example on here if they say they feels disorganised..it’s “ooh you must be ND!!”

Historically there has been a massive amount of under diagnosing, not understanding and ignorance.

Yes the doctor said she thinks I didn’t realise the extent of the spectrum, that when we when the review with the both I will see the reports from the ADOS that will highlight the issues she had.
I don’t know it’s just come as quite a shock I think and I was just concerned at maybe the ADOS was because she was shy on the day. You have reassured me though !

Lots of autistic people have great eye contact and conversation. But also my autistic son has great eye conact with me. I hadnt noticed he didnt make eye contact with anyone else. I also hadnt realised how much i had modified my interactions to support his.

The professionals who do the ADOS will know what to look out for. When we got DS's report we were shocked by the things they noticed that we hadn't and that was in spite of the fact that we already had one diagnosed child and thought we were fairly tuned in. The other thing I would say is that the traits seem to us to become more prevalent/harder to mask going into secondary school and the teenage years so whilst a diagnosis may seem unnecessary at the moment you may find that you are thankful for it later as it's one less hurdle if your child starts struggling and you need support