Questionnaire for family members for adult autism assessment?
March 9, 2023 6:43 AM Subscribe
My younger sibling has asked me vs our mom to be part of his assessment for autism. I don’t know the answers to questions about developmental milestones so I’d like to surreptitiously pump our mom for info, but I don’t know what to ask. Is there a questionnaire or assessment tool I can find as a guideline? Or, what kinds of questions are parents of adults seeking an assessment for autism asked?
When I was assessed for ADHD, I was given a fat package with a bunch of stuff for my mom to answer. Sib wasn’t given anything like that and I wouldn’t be able to answer off the cuff. Was only 6 when he was born so frankly idk! Can only speak to my impressions of him which honestly is vague. Idk about his language development or when exactly he stopped breastfeeding or what have you.
I can find tools for parents of children but not adults.
When I was assessed for ADHD, I was given a fat package with a bunch of stuff for my mom to answer. Sib wasn’t given anything like that and I wouldn’t be able to answer off the cuff. Was only 6 when he was born so frankly idk! Can only speak to my impressions of him which honestly is vague. Idk about his language development or when exactly he stopped breastfeeding or what have you.
I can find tools for parents of children but not adults.
Best answer: Do you have some sense of how long this is going to take? I used to be involved in doing this kind of assessments with parents of adults and there were options ranging from a five-minute questionnaire to a two-hour interview. Knowing which end of the spectrum you're looking at might help us direct you toward specific tools that are likely to be used.
Also, disclaimer here: I've been out of this field for a decade or so. It's possible the state of the diagnostic art has changed here.
But for what use I can be: the short end of the spectrum would typically be something called the "Social Communication Questionnaire." I wouldn't be surprised to find you can dig up a copy of this floating around the web somewhere, as it's a fairly straightforward set of 40 or so yes/no questions. I didn't do any serious looking for it, but I did at a quick scan dig up this article which has a table telling you at least the broad topics asked about.
The long version of this is something called the "Autism Diagnostic Interview-Revised." (ADI-R). I don't think you'll be able to find that online; it's a long, specialized, structured interview that requires a lot of specialized expensive training to be able to administer. But having the name might help you look up at least some information about what to expect, and I've linked to the Wikipedia article about it for some background about the types of things you'll be asked about. It's not going to be super important that you know specific milestones generally, though it wouldn't hurt to know a few things about for example, age of first words, first steps, any serious *regressions* in previously-gained abilities, that sort of thing.
Anyone trained in doing this interview should have plenty of experience with people who weren't old enough or around enough to know everything about the person's childhood, in situations where the parents aren't available or willing for any reason. They won't be surprised or worried if there are things you can't answer, will be experienced at helping you elicit any information you *can* remember ever hearing about, and may be willing to prep you a little with "these are the sorts of things I'll be asking about, so you can look around and see if you can dig up any relevant records ahead of time." If it's the ADI-R, that specifically asks both about current behavior and childhood behavior, so even if you can mostly only answer about what your sibling is like now and only give a few details about their childhood, that will still be a really helpful and important way to support his diagnostic process.
Thanks for doing this for your sibling.
posted by Stacey at 8:04 AM on March 9, 2023 [1 favorite]
Also, disclaimer here: I've been out of this field for a decade or so. It's possible the state of the diagnostic art has changed here.
But for what use I can be: the short end of the spectrum would typically be something called the "Social Communication Questionnaire." I wouldn't be surprised to find you can dig up a copy of this floating around the web somewhere, as it's a fairly straightforward set of 40 or so yes/no questions. I didn't do any serious looking for it, but I did at a quick scan dig up this article which has a table telling you at least the broad topics asked about.
The long version of this is something called the "Autism Diagnostic Interview-Revised." (ADI-R). I don't think you'll be able to find that online; it's a long, specialized, structured interview that requires a lot of specialized expensive training to be able to administer. But having the name might help you look up at least some information about what to expect, and I've linked to the Wikipedia article about it for some background about the types of things you'll be asked about. It's not going to be super important that you know specific milestones generally, though it wouldn't hurt to know a few things about for example, age of first words, first steps, any serious *regressions* in previously-gained abilities, that sort of thing.
Anyone trained in doing this interview should have plenty of experience with people who weren't old enough or around enough to know everything about the person's childhood, in situations where the parents aren't available or willing for any reason. They won't be surprised or worried if there are things you can't answer, will be experienced at helping you elicit any information you *can* remember ever hearing about, and may be willing to prep you a little with "these are the sorts of things I'll be asking about, so you can look around and see if you can dig up any relevant records ahead of time." If it's the ADI-R, that specifically asks both about current behavior and childhood behavior, so even if you can mostly only answer about what your sibling is like now and only give a few details about their childhood, that will still be a really helpful and important way to support his diagnostic process.
Thanks for doing this for your sibling.
posted by Stacey at 8:04 AM on March 9, 2023 [1 favorite]
Response by poster: Thank you, this is so helpful!
I’m to be present for about 30 minutes, if that helps!
Edit: they didn’t offer any materials in advance unfortunately!
posted by cotton dress sock at 9:03 AM on March 9, 2023
I’m to be present for about 30 minutes, if that helps!
Edit: they didn’t offer any materials in advance unfortunately!
posted by cotton dress sock at 9:03 AM on March 9, 2023
Best answer: I'm guessing that your mom maybe isn't very accepting or understanding of autism? You might be able to get around that by prompting her to tell funny/annoying stories about your sibling when they were a kid. Like, "Hey mom, remember how Sibling was so in love with the Ninja Turtles in elementary school, haha, that was so funny of him!" And then she might tell you how she had to let him watch the first fifteen minutes of the movie every day after school or he'd have a tantrum and for six months he would randomly shout "Turtle Power" so often that she had to have a parent-teacher conference about it. Bam, criteria B1-B3!
You can ask your sibling, too, if there's any particular times or issues that he thinks his autism really showed up in family life. Reminiscing with him might spark some memories for you. Also, you might find some good stuff in childhood/teen diaries, if you have any. Times when you were worried about your little bro because he didn't seem to have any friends or embarrassed by his interests/behavior, things like that. You're looking to fulfill the criteria that his symptoms are persistent and have been present since early childhood, to differentiate autism from other potential diagnoses (like trauma or anxiety disorders). Good luck to both of you, hope it goes smoothly!
posted by radiogreentea at 4:30 PM on March 9, 2023 [2 favorites]
You can ask your sibling, too, if there's any particular times or issues that he thinks his autism really showed up in family life. Reminiscing with him might spark some memories for you. Also, you might find some good stuff in childhood/teen diaries, if you have any. Times when you were worried about your little bro because he didn't seem to have any friends or embarrassed by his interests/behavior, things like that. You're looking to fulfill the criteria that his symptoms are persistent and have been present since early childhood, to differentiate autism from other potential diagnoses (like trauma or anxiety disorders). Good luck to both of you, hope it goes smoothly!
posted by radiogreentea at 4:30 PM on March 9, 2023 [2 favorites]
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posted by coffee_monster at 7:21 AM on March 9, 2023 [1 favorite]