ADOS - is a diagnosis made after this appointment?

[lawofdistraction]

I've received an appointment for DD10 to have an ADOS with a SALT. I'm a bit confused as she had an appt with a paediatrician last September who said she was referring her for a multi disciplinary assessment and she would be seen in a number of settings, but reading up on ADOS (I'd never heard of it) suggests it is one appointment with a decision made after that? The letter doesn't explain at all.

I'm worried that she won't be diagnosed. She is very bright, articulate and sociable. She makes eye contact. We have terrible behaviour and sensory problems at home, but she would never display these in front of a stranger. She will be compliant and charming at this appointment. Also, they are asking that she wear a mask if able - she can, but won't that hinder them seeing her facial expressions?

Since her appt last year, she is now under investigation for epilepsy which I know is over-represented in people with ASD, and she has been found to have a brain abnormality which again is apparently often found in people with ASD. Will they take that kind of information into account, or will their decision be made solely on how she is at this ADOS appointment?

It's taken YEARS to get to this point, first being fobbed off by GPs, then waiting 18 months for a first appointment and then almost a year for this one, and I can't believe it could be decided by a SALT in 1 hour?!

[Evenstar]

My son was diagnosed at 15 and it was confirmed by the specialist nurse after this test. I am afraid I can’t help you with the other questions, but the test itself is designed to see the underlying issues I think, so things they would “mask” in social situations.

The school and I also filled out questionnaires before the appointment which asked questions about what we had observed, and that was also taken into consideration so her behaviour at home would be very relevant too.

[lawofdistraction]

Thank you. We filled out questionnaires last year, so I guess they use those too. It feels pretty nerve-wracking to have finally reached this point!

[Evenstar]

It is but actually you have time on your side in one way as you are pre-secondary school.

DS took medication from diagnosis in Year 10 till the end of Year 11, it helped a lot, and he also got extra time in exams and a laptop to use at school, as handwriting was a real problem for him. That was enough to get him “over the line” GCSE wise (though he dropped his modern language) and secure a college place, he had to continue functional skills for his English, but school just wasn’t his thing.

He is 24 now, working in IT (not what he studied at college!) has his own flat, lots of friends and is really happy. He should undoubtedly have had a diagnosis much earlier, but he was quiet at primary and just didn’t progress, but it worked out for him despite that.

[lawofdistraction]

I'm glad to hear your DS is doing well evenstar.

One of the reasons I would prefer a diagnosis sooner rather than later is I've read that girls with HFA can cope quite well socially at primary age, but it can become harder for them in their teens when social interaction becomes more complex. I mainly think a diagnosis would help her understand herself as she gets older.

[Evenstar]

I think that is probably true, my older DS and DD probably had similar difficulties and the social side really was very difficult for DD. I was told my elder DS was “a very naughty boy” at primary school after they had “considered” he might have ADHD, at least now they would probably seek an assessment from someone qualified to make that distinction.

DD tends to be blunt and view telling the truth as more important than people’s feelings even now she is nearly 30, and she finds working in a team difficult at times. However she has held the same job for 10 years and has lots of friends now.

I hope all goes well for your appointment.