Published on 12, July, 2020
Hi all,
My informant completed the ADI-R today, and they called me when it finished and told me what they had said. A lot of things don’t match up to my experience - for example, they said I can carry out small talk (I struggle massively with this), that sounds didn’t bother me as a child (I used to run away from the hoover/cover my ears, and would cry during storms because of the noise) and that I don’t mimic people (I’ve been doing this my whole life, to the extent even my accent can change). I scored over the threshold for all areas, except for 1.
I feel I strongly identify with a lot of autism traits, and when my informant told me the assessor felt a lot of my symptoms sound like social anxiety, I don’t think this matches me, I feel it’s more than that. I found my ADOS-2 assessment so overwhelming, I couldn’t complete some activities as I got so stressed I cried.
Does anyone have experience with below threshold ADI-R scores and still getting a diagnosis? Until today, I was convinced I’d be diagnosed, now I’m not so sure.
Thanks.
Thank you, it was stressful but I am getting help for the repercussions from that. I am sure that most of the focus will be on your own lived experience and what they have observed. My son also actually initially came out as not meeting the threshold for a diagnosis based on what the school had said but the observations of him seemed to hold more weight. Good luck to you.
Oh I’m so sorry your Mum lied, that must have been stressful for you. I am hoping I will get a similar outcome when I get my diagnosis (or not) in the next few weeks. My partner is the same, he’s picked up on things that my Mum had never noticed before. Thank you!
Yes- I scored WAY below the threshold in my ADI-R as my mum basically lied through most of it and said I had no difficulties aprt from social interaction. The clinician said the same thing to her- it sounded like social anxiety.However, in my ADOS-2 the clinician put something along the lines of whilst Jessica's communication is relatively good, she clearly presents as autistic and she picked up on lots of (embarrassing) things and movements that I do which only my partner has ever seemed to have picked up on...So I still got diagnosed as I was well above threshold on this and my questionnaires
Thank you, I did make sure to write as much as possible as I keep a lot of my struggles to myself, so I knew my informant wouldn’t be able to give accurate descriptions.
I wouldn't worry if you wrote a lot about yourself. My husband wrote very little about me but I wrote loads about myself and all the questions were around my experience. They didn't ask to talk to him.
I guess they realise as well that neurotypical informants will often try to put a 'positive/neurotypical' spin on everything, and will remember the positives. You probably masked at times, as I did. I was outwardly quiet and obedient as a child but not on the inside!
I also anticipated the social anxiety thing and explained why I didn't try hink I had that. Tell them they're wrong!
Good luck. It's you they're interested in.
Thank you for your response. I did manage to do that, and I filled out the questionnaires in as much detail as I possibly could, practically short essays. Hopefully they’ll see enough of my perspective.
My mum filled out one form and that was the full extent of her involvement with my assessment, but the scoring on that was below the threshold. It didn't stop me from getting a diagnosis, because the assessors prioritised my own memories of childhood and understood that my biggest struggles were at school, where my mum couldn't see them.
It sounds like you've been able to provide some information about your childhood too, so I imagine they'll take that into consideration, especially since they've observed you in person too.
Thank you - my informant is 60, so still has a decent memory of my childhood. I’ll just have to wait for the feedback appointment to find out.
I don’t know what my mum put on my form but I was still diagnosed as having ASD, specifically Asperger’s, despite insufficient evidence of autism when I was a child because I met all their other criteria. This may however been influenced by the fact I was 50 and my mum was 84 when I was diagnosed so neither of us could remember that much about my childhood.