Too old for ASD diagnosis? Thoughts ...

[frazzledbutcalm]

Dd 2 has asd dx. dd1 and ds2 are going through the dx process. Been today with dd1 and would like some advice/thoughts please.

Dd1 is now 17. In a nutshell, we've been told today that dd has many autistic traits but not enough for dx ... but they feel if she'd been through the system when she was younger (7 or 8 was said) then they feel outcome would have been different and she'd have been given a dx of asd. But as she now copes with change, is sociable ie goes to college and copes with it, goes on a bus independently, gives some eye contact, then she doesn't fit criteria for dx. They said even though she is behind her peers and where they'd expect her to be at 17, we've helped her to mature, learn and understand over the years since she was young and she can now cope with things she couldn't previously. They suggest we continue to be supportive with her and that will help her further mature. If she has difficulties in the future with work etc, she can explain to employers that there's autism in the family, she herself has many autistic traits and she can't cope with some things so may need help/guidance. They also stressed an asd label (their words!) is not always helpful! It can be at school but certainly not in the working world!

I don't know what to think or do. Any thoughts on the above? TIA.

[Ineedmorepatience]

What polter said ^^ !

[Melawati]

I would really want a second opinion on this one. Was it after an ADOS or DISCO, or closing the door to having one? It sounds like they are saying there is still a delay but she's managing to cope with basic daily life, but there must have been some areas of concern to get this far.
It sounds a bit different to being told there are some traits but not enough for a dx. In your area is she about to move to adult services at 18 and could this be a way of stalling until she's out of Camhs?

[frazzledbutcalm]

It used to be camhs .. Changed name to cyps a year or so ago.
No ados or disco ... Aide memoir, group sessions, observation in school.
Our service runs till age 24 I think. I stressed how much daily input dd needs with basic understanding of situations etc. They said she shouldn't nee it at her age but she'll catch up in the next few years.

[Bonkerz]

I'm on the other side. Ds was dx age 7 with asd. He is now 16. His asd dx has secured him a place in a specialist school and that's helped a lot. We are finding that moving into adulthood is trickier with the label. He's just applied for his motor cycle license but needs permission from Cahms to obtain it!
Infact the Cahms Doctor did say that now he he strategies and coping mechanisms etc that he will take away the dx of ADHD and could remove asd!

[frazzledbutcalm]

I agree polter ... I thought dvla only need informing if your disability affects your ability to drive.

bonkerz ... That's what I'm struggling with ... If you have autism/adhd etc, then you have it for life, you don't grow out of it. I can't understand how the camhs doctor can remove your ds dx .. Nor our professionals not giving a dx now yet they would had dd been seen when she was younger.

I hope that reads right ...

[Melawati]

I agree frazzled surely having good coping strategies in place doesn't change the dx, it just means coping strategies have been learned for the current set of challenges/areas of difficulty.
That's not to take away from the progress Bonkerz DS has made, but I always thought ASD was a dx for life.

[tartanterror]

Maybe point them to this service run by Simon Baron Cohen? Clearly he doesn't think people are ever too old for diagnosis and the help this can bring. Crumbs

[tartanterror]

Oops www.cpft.nhs.uk/services/class-clinic.htm

[tartanterror]

Or this? www.aettraininghubs.org.uk/wp-content/uploads/2012/05/8.1-Blackburn-paper.pdf

[CheeseCakeSunflowers]

My DS was diagnosed privately aged 21 by a charity who will diagnose people of any age. The diagnosis helped him claim PIP. The only problem I know of that a diagnosis might cause difficulties with is if she wanted to join one of the armed forces. Other employers have no right to ask however I think it is best to mention ASD as it helps them make adjustments.

[Bonkerz]

When he applied for the license he had to fill out a health form and we have had a letter saying they are writing to Cahms. We were warned that autism is a notifiable condition to dvla.
I think the reasoning behind removing ADHD and possibly asd is to make life easier and avoid the discrimination that we all know still occurs. Right now though the diagnosis is helpful to Ds.

[Kleinzeit]

Also if your DD does need further support at college or university then a diagnosis will help her access it. At 18 she is thought to be an independent adult, if she is still relying so much on your help then even if she has improved she still needs a diagnosis. How else will she get the support she needs as an adult? Having autism in the family doesn't bring that support for her.

[notgivingin789]

I'm a bit skeptical with Cahms. A lot of people that I know of had a lot of issues with them.