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

@AlwaysConfuzzled

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.

What was the input from DD?

I don't understand why now you have the diagnosis you are querying them not meeting her when you must have known they wouldn't meet her when you set it all up.

Is it a full assessment op or some kind of screening assessment? Your DD sounds very much like mine. I had no idea just thought she was quirky & needed me more than my other children, it was secondary school where it all fell apart. Was on CAHMS waiting list & we decided to go private as wanted to apply for an EHCP. I paid £2300 a few years ago & she met with the psychologist three times and with a paediatrician once and I also met with both. The whole process was fine over about 4 weeks

Not a specific comment you your case but in schools these private diagnosis are rife. Teams diagnosis often, at best, often incorrect too.

@Toptipsneeded a proper diagnosis has to be made by a team of different people, educational psychologist, speech and language therapist etc.
When DD was diagnosed I first had a screening interview for 1 hr to see if assessment was appropriate, I then had a 2 hour interview with an Ed psych going over her developmental history, we then spent the best part of a day at the clinic where she did the ADOS test in the morning and cognitive tests in the afternoon. They requested both myself and school to fill out forms, interestingly school hadn't picked up any signs at but do now as she tries to mask less. It cost £2500 the 50+ page report was incredibly thorough. Yours seems incredibly cheap and sounds more like an expensive screening than an actual diagnosis. The ADOS test and cognitive test can be done over teams but not to meet her at all is highly unusual, it's a bit different if they attempt to meet her but she won't engage or if she has very obvious signs but still to diagnose a lifelong disability without meeting is bizarre.

At the end of the day though, does it matter if your DD is autistic or not? If the adjustments that are put in place help her with whatever issues she was struggling with which caused you to reach out and go for an assessment in the first place.

I would have serious questions about the validity of the diagnosis given it seems to have used a non standard assessment approach. I think when it comes to private diagnosis you do need to pick very carefully as standards will vary a lot.

personally I think my next step would be to use this as a working diagnosis, have a conversation with the school about what is needed to support her and then push for her to be referred for an nhs assessment.

There is no way that assessment can be valid without meeting the child.

I only realised my daughter was autistic when she started secondary or just before. She did well in school and her issues were social always not academic.

now that I look back I can see the signs were there with eye contact and loud noises.

Late diagnosis of girls is only too common.