to not know whether to believe private diagnosis of ASD 12 year old DD

[AlwaysConfuzzled]

Multiple issues with DD but only over the last few years really apart from always being much quieter than older sister and somewhat unsociable or selective with friend choices, completely ignoring children she just didn’t like ( usually louder, immature ones much like her sister! )
Some eating issues pushed me to go for an assessment and primary school had no concerns as she’s a model student so said she would be waiting years
Its come back today as a yes and now I’m struggling to know how accurate it can actually be as they didn’t even meet her, just myself and a lot of written reports from myself; teacher and some input from DD.
Has anyone been in this position? Thanks

Have you looked at any of the female presentation information about autism ?
also anxiety is very common as is the model student ( often coupled with dysregulation upon home time )

Why didn't they meet her? She may well be autistic but it sounds like a very poor assessment.

Was the assesment in line with NICE guidance? I don’t think they can do it with no face to face with the child although some private ones do it via video link

They just don’t offer an in person meeting with the child as part of the assessment
They do offer therapy after however DD has refused this
She does meet lots of the female presentation criteria - it’s just odd to me to only see signs this late

It does meet NICE guidelines - RTN the company was called

I think that sounds like a pretty shocking assessment. Do you mean they literally didn't talk to your dd at all? Or they did talk to her, but online? Did they use any particular assessments eg ADOS?

How did it work if they didn’t meet her?

How can you diagnose someone without meeting them?

It doesn’t meet NICE guidelines if they didn’t meet her. Online assessments count though.

My daughter is Autistic, I can't believe any NICE compliant assessment can be done without meeting the child. We have a private assessment and it was very thorough, half a day of interaction with the child in various situations in addition to all the forms and parental interviews.

I think it's strange they didn't meet her but I also don't think it's odd that they didn't see signs until this late. I think that's fairly normal for a girl.

I’m struggling to know how accurate it can actually be as they didn’t even meet her

What?!

How much did you pay for this ‘assessment’?

I'm really shocked they didn't meet her.

Did they at least do a Zoom or was it literally all paperwork?

Autism presents very differently in different people. She does have some traits from what you've listed.

What fo you hope to achieve from the diagnosis? Unfortunately, the reality is you can get a diagnosis but actual support from anywhere is generally very minimal.

DD’s NHS assessment took place online.
They didn’t complete an ADOS assessment as dd wasn’t engaging and they’d seen enough already.
She didn’t “meet” anyone in person.

Model student, avoids loud or immature children, food issues.

perhaps a bit disorganized or dis-regulated at home where she can relax? Deals with anxiety? In some ways seems young for her age and in others seems like talking to a 35 yo lawyer trapped in the body of a child?

That’s really interesting ponderingwindow as you’ve described her like you know her
She can’t walk to the local shop literally 2 mins from the house in case she gets kidnapped however also is incredibly bright and articulate and can’t understand how girls her age are so immature to have “ crushes “ which are likely to go precisely nowhere so are an utter waste of time and energy!

NICE say they need to do direct observation

In order to be diagnosed the signs have to be there from the early years, that's why they take the developmental history. You must have a good inkling that she was autistic to go down the private route, people don't tend to spend £2000+ for no reason.

DD was always quirky as a young child but those quirks didn't become an issue and start to impact her negatively until she started Secondary school which is a very normal time for children to start showing blatant signs as Primary school is safe and repetitive whereas high school is loud and less structured with greater demands and influx of hormones.

Like everyone else says, it can't be an accurate or robust assessment if they haven't met her.
However - it is very, very normal for articulate, intelligent girls with autism to not be diagnosed until puberty, or much later in their teens.

They charge £900

@Clymene £900 is incredibly cheap! Around here it’s £2800 and that’s cheap. Others I’ve looked at were £3600.

Op that sounds rather odd for them not to meet her, I know some providers carry out adult assessments online, but I’ve not come across the same for children. Dd’s haven’t had theirs yet but it’s taking place across 4 mornings. Two of which they’ll be attending.

I don’t believe for a minute anyone should or could diagnose a lifelong neurological disorder without meeting their patient.

I agree that the assessment sounds a little ropey having not met your DD however it could well be correct.

My DD2 has autism and is a model student, incredibly intelligent however she has such a limited diet, can't handle noise or certain textures, doesn't play with children her age etc. School didn't really have any concerns however I wasn't happy with them fobbing her off as being 'shy'. Autism is so different in girls compared to boys. Quite possible for her to be 'hiding' it for so long.

DD was told there were no concerns when all the paperwork was submitted for NHS ADHD/autism assessment. They never met her in person. She is anxious, self harms, struggles readfully with friendships, struggles with emotional regulation, follows rigid rules, perfectionist, doesn't understand sarcasm or a lot of jokes and a host of other issues. Has other health problems that are often comorbid with autism/ADHD. Has had issues from primary school.
But nope, no diagnosis, they are not interested in seeing her in person.

@AlwaysConfuzzled

i just described myself and my dd.

there is a particular type of female autism and you described enough traits that given the diagnosis it seemed likely.

for us at least, this particular type comes with some challenges, but overall feels like a net positive. Obviously I can’t speak for other girls and women.