ADOS Assessment

[ChamomileTea22]

Hello,

I hoping someone can help. I feel out of my depth.

My DC 17 had an ADOS assessment today, via Teams. They scored highly in the early year's assessment with a strong leaning for an ASD diagnosis. They didn't meet the threshold on the ADOS assessment. Apparently, the clinicians were surprised by how articulate my DC is and by the levels of empathy, they showed for one the characters in a story. They have traits apparently but don't quite meet the threshold.

The referral was made by CAMHs last summer after an attempted suicide. Apart from this referral, not much help.

They turn 18 soon.

My dc is upset by the outcome. They have shut down and have gone to bed. We spoke about it after. They felt like they didn't know how to answer half the questions. Or remember certain situations and how they respond.

Can I ask for a second opinion? If so, how do I go about it? Any advice would be really welcome.

[oddworld]

Have a look at the NICE guidelines here to check that they have followed the guidelines.

It only says they can 'consider' a second opinion. I'm not sure what happens after 18, because once they're legally an adult, possibly they could request another assessment from adult services, but, be warned, there's a very long waiting list in most areas (2-3 years where I live). If you can afford it (£1000+) you could try a private assessment, but be aware that to access NHS services they usually want a diagnosis from a service which also has an NHS contract (e.g. the Lorna Wing Centre does both private and NHS assessments).

If your dc is a girl (I realise you probably prefer not to say), read a bit about the ways autism can present differently in girls, particularly with the masking of autistic traits. Many girls fail to meet the criteria for diagnosis unless the assessors have specialist knowledge/experience of autism in girls.

Good luck. I hope you and your dc are coping ok

[ChamomileTea22]

Thank you oddworld for the reply. I appreciate it.

Yes, they are female but identify as male. It brings a level of complexity to the situation.

I felt confident yesterday to challenge the diagnosis. Today I feel wobbly and overwhelmed. However, I know how important this is for my DC.

That's interesting you mention the assessors specialising in girls with ASD. I will look into this. It's difficult to discuss it with DC openly and with professionals in some circumstances with the gender identity issues.

[oddworld]

That might also give you some extra room for challenging/asking for a second opinion, as I'd imagine the assessors would preferably need some experience of gender identity issues. You might also be able to push to be referred to a specific service with relevant experience rather than just wherever is most local. (If you're in the South East, Lorna Wing Centre is supposed to be brilliant).

This study might be interesting to read too.

I hope you and your dc get somewhere with this and don't have to wait too long. It's an area where the NHS seems to leave too many people feeling demoralised and badly served.