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

You don’t need to do anything with the diagnosis beyond using it to get support in school - which it sounds like she needs. Teachers won’t take on the hassle of EHCP asnub unless they are certain the child will struggle without that support.

My DH was baffled that our DS was diagnosed autistic - because he’s just like everyone in DH’s family, and DH didn’t spend much time with other children (and thought most children were freaks anyway 😂). DH couldn’t see the extent to which DS’s ‘shyness’ and literal mindedness and pedantry was unusual and extreme, because he could relate to it: that’s how he was when he was little. In his mind you’d have to be pathologically confident (and a bit dim) to be any other way.

Meanwhile I would be approached in parks sometimes by other parents who recognised that DS was autistic - way before we had a diagnosis. It is generally pretty clear to people who have an intimate understanding of how autism presents.

As a physio in mental health, you'll be rehabilitating patients with comorbid mental health conditions. CAMHS in my area weren't working with patients with ASC. It would be interesting to know what you are basing your anecdotal evidence on and how many patients with autism or ADHD you've dealt with.

You'll be aware that many with ASC have a comorbidity of ADHD or anxiety or sensory processing disorder. Anxiety presents in many girls on the spectrum.
I despair when people like you are in the field in the same way I despair whenever I meet anyone in education claiming "we're all a bit quirky, aren't we?"

Providing actual data to back up your opinion would go a long way.
The OP was questioning their child's diagnosis. They could get a second opinion but the majority on here are saying it is highly unlikely that the psychologists have got it wrong/given out a diagnosis on spec. If you knew anything about the pathways, you'd know how hard it is to get even as far as an ADOS in the first place. Most schools don't push in the same way the OP's appears to have done. It costs both time and money that many SENDCOs just don't have.

@Laughterbutchaos21 if you answered the questions honestly then you've done your bit. Despite what some posters may think, an autism diagnosis isn't given out willy-nilly on the basis of one person's opinion.

My son is autistic, and quite severely impacted by it. Our home life naturally is what he needs though, so he comes across at home as having quite low needs - we've just instinctively adapted to what those quite significant needs actually are. E.g. he's an only child so he gets all our focus. The environment is always what he needs it to be - if he needs calm he does calm activities, if he needs stimulation, he does stimulating activities. There's no other children in the house to upset that balance that he needs, when he needs it. It wasn't until I had to do things like a DLA claim and his EHCP stuff that I realised just how much we adapt because of his needs - it feels very normal and very natural to us. It's half term this week and we've been to the park to poke the same stick into the same puddle for hours 4 days on the trot now 😵‍💫

After DS1's first assessment session, DH said he still didn't see why we were there.

Clinical Psychologist: most children would say/do X, he did Y
DH: that's just him though
CP: Autistic children would say/do X
DH: well he's always done X
CP: 😐
DH: I always do X
CP: 🙄

I think after multiple assessments: history, forms from school, forms from parents, ADOS - if the data is there, then yes of course.

We had another diagnosis after 15 mins in person with only an online form from us as school refused to engage. That one did feel too easy.

My DD used to copy her sister and cousin so up until she was 8 I really had no idea. She suffered a year of bullying and then the signs began to appear.
She was diagnosed at age 11. It was a tough 3 years and tbh getting the diagnosis didn't make things any easier.
Like you said she is still the same person and my DD has learned ways to manage her condition and we've learned ways to support her. She is high functioning and often people don't even realise she's autistic as she still masks in public but then has a meltdown at home.
It's incredibly hard to get a diagnosis for any child. My DS has been displaying signs of autism since he was 2. He's now 3.7 and we're still no closer to getting a diagnosis or even seeing anyone apart from padeateic doctor
Your DD won't get a diagnosis unless they are sure. Honestly anyone who says they just give autism as an easy answer has never been through the process.

My son was diagnosed 26 years ago on the cusp of the increase in numbers. The year before son was diagnosed the diagnostic team saw four children a month, the year of his diagnosis they saw four children a week. School has just referred my four year old grandson to the same team (if he is I have missed it) and the wait is three and a half years. My daughter was diagnosed at 2, 19 years ago, in y5 she would have been described much like OP's daughter. Without the dx most people would have had no inkling of her difficulties.

Hi, I do ADOS assessments for a living and I have a PhD in autism. I also think I am on the spectrum/ or have been. I believe we women are good at mimicking and passing as neurotypical - to the extent that we no longer meet the diagnostic criteria and therefore do not 'have' the autism. It's an unpopular opinion but I really do believe this and can back it up.

A few things

• ADOS has to be done by a stranger as you have to understand the child's reactions in certain social situations.
• You can and might want to challenge the report or ask for a second opinion. I think the professionals you talk to should know everything you have said here
• Autism diagnostic criteria are that the symptoms are SO persistent they interfere with every day functioning. Do they?
• If she hits the diagnostic criteria it's no biggie. Nothing changes and she's still the same person. It's all about how you and her deal with the diagnosis that matters the most.
• The ADOS isn't the gold standard anymore. DISCO is much better.

Teachers won’t take on the hassle of EHCP unless they are certain the child will struggle without that support.
They will get a Learning Plan/reasonable adjustments in exams (if that has been in place for years) but there are many children out there with a diagnosis that do not get an EHCP. The latter - like the diagnosis itself - has to be fought for.
The number of new EHCPs given out rose by 7% between 2021-22 but the actual number of requests had risen by 23%. The speed at which requests were dealt with was slower by 10.7%.

Not disorders; different neurotypes. You keep showing your ignorance and the fact you claim to be "in the medical profession" is worrying,even if that's limited to an NHS admin role (a wild guess).

Before my ADHD diagnosis I had a lifetime of social dysfunction, incredibly poor self esteem dating back to childhood, and felt an utter failure. Post diagnosis... I'm still a socially awkward fuck up, BUT I know why... I dont feel the same sense of personal failure.. and also on medication... I'm actually a functional adult human... no one celebrated my differences or quirks pre diagnosis... they just agreed I was shit at life and reinforced my negative perceptions of myself. So yeah... my label is fine by me !!

.

They say they're a physio in mental health and basing their ideas on adults telling them they have ADHD/ASC.

Worrying on a number of fronts, then (and embarrassing for them to have displayed quite such a breadth of ignorance), but clear they're totally unqualified to be contributing to this thread on the basis of their being "in the medical profession" .

A lot of bullying and piling on one poster on this thread. Be kind.

Bullying? How?

Said poster hasn’t been kind to those with ND - at all.

I have to say the ignorance we’ve experienced within the NHS as regards ND has been quite shocking. It’s not good enough but I think training is starting to happen.

gony sound cheeky but what you consider/diddnt/dont consider 3"traits"may be cos-you are same /similar.I think the key is to remember "spectrum" has a wide and variable range. Once(if)diagnosed- your daughter will not be any different. What can change\be implemented is adapting how she is catered for at school.Her learning style may be -different from typical.Neurodivergent may be something to explore? Learning styles can be tailored to suit her needs-it doesnt equate to inability to learn.

😂😂😂

I was about to say this @wellhello24 Is your "medical profession" a bit like my friend that did a bit a training and stated calling herself a "teacher"!?!

You've been through the NHS route and had a multidisciplinary assessment as per the NICE guidelines. They really won't diagnose unless they can match your daughter's presentation to the ADOS criteria.
At work I do advise parents to be cautious when taking the private route, as some do not follow NICE guidelines and they are trying to build a reputation as being a quick and easy route to diagnosis for those parents who feel they need/want one for their child.

Two of my children are autistic, both diagnosed the NHS route - one girl, one boy. Both very different (total opposites) in their presentations. My daughter is seemingly very able socially, but it is all very surface-level, my son has always been more withdrawn and is not socially motivates.

Just to warn you - even though I knew that both of mine would like get a diagnosis, reading the ADOS reports was still hard because it maps out their differences to nt children. So be prepared for that, but remember your daughter is still your daughter. And believe me - if she us autistic it is so much better to get the diagnosis before secondary school. Typically we see girls coping with primary school and then struggling at secondary school and then face years of waiting lists and self doubt for diagnosis.

Hi everyone, please can we avoid focusing posts on one poster. if any posts are concerning, please report them to us.

She won't get the diagnosis without your consent. You do not have to accept it.

We were told DD was....it never fitted her and when I questioned it they couldn't provide examples of various parts of the diagnostic criteria. So I refused it. It seemed a lazy diagnosis designed to make her fit it rather than the diagnosis fit her.

Fast forward a few years and she was diagnosed with a different condition by a different team. This is the correct one. It's made me wonder how many other kids have been misdiagnosed.

Just to say thank you for your opinions, I will brace my self for the report.
I am under no illusion that DD does have some difficulties, I just always accepted it as who she was - shy - passive but the sweetest soul.
suppose I feel guilty for not realising there was more to it.

I really, absolutely despise the labels. I think there are children who absolutely without doubt and very obviously need additional support. I also think there are many children (like one of my own) who might be delayed in one area, or a bit more shy than the average child etc… who are being ‘diagnosed’ usually by their parents with a label that will stay with them for life.

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. 🤷🏼‍♀️

I am NOT trying to take away from children who are genuinely autistic and need the additional support but I know sadly, if I wanted to I could get my children diagnosed with something if I wanted to make a song and dance about it,

Please can that poster stop posting ableist ignorant comments as if they know something about people with ND and ASC/ADHD assessments, which they blatantly don't as has been quite rightly and repeatedly pointed out. I'm frankly sick of it. And MN shouldn't be defending her. She's getting a lot of replies as she keeps posting and ND people feel the need to defend themselves. As we've had to do our whole lives. Her posts aren't even relevant to the OPs question.

Presentation in girls can be SO subtle! We feel incredibly guilty - for often thinking she was rude, difficult etc...when all along she was struggling.

@InattentiveADHD thank you.