Lack of modern items in autism assessment. What behaviors would you include?

[borne_before]

For example, it kinda drives me bonkers how most rating scales were developed before the iphone.

One common and high specificity behavior I see in autistic kids is repeatedly playing the same one or two bursts of a favorite clip on youtube on their phone/tablet. So a good question for a rating scale would say: How frequently does your child watch and repeat same short part of favorite clip on youtube? Or, How frequently does your child use your finger as a stylus to work a tablet?

What other stuff do you see that needs to be included in modern rating scales/interviews?

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[ThatPsyGuy]

For example, it kinda drives me bonkers how most rating scales were developed before the iphone.

One common and high specificity behavior I see in autistic kids is repeatedly playing the same one or two bursts of a favorite clip on youtube on their phone/tablet. So a good question for a rating scale would say: How frequently does your child watch and repeat same short part of favorite clip on youtube? Or, How frequently does your child use your finger as a stylus to work a tablet?

What other stuff do you see that needs to be included in modern rating scales/interviews?

Would the example you gave be a form of echolalia?

 

[borne_before]

Would the example you gave be a form of echolalia?

Good point. Although could be added.

How frequently does your child watch and replay the same short(1-2 seconds) part of favorite clip on youtube? (there might be a sensory component, like they like the sound or how it looks).

 

[ClinicalABA]

I always ask about what videos the child watches (and I'm talking 2 year olds). You get the typical Cocomelon, Daniel tiger stuff. A surprising number of kids who go on to get a dx watch suprise egg videos ( I warn you- dont go down that rabbit hole) or videos of other people playing with toys, in each case usually where you just see another person's hands. Also- videos in a language the child family don't speak (Russian and Chinese come up a lot).

As to what you mentioned being like echolalia, I'm not sure. I think it could be similar in that it's a potential means of accessing sounds that are reinforcing based on physical features, rather than their representational value. I'll have to ask an individual who has done both of these things if they think it was in anyway similar. When I've asked such questions in the past, I've typically gotten very reasonable answers along the lines of "I just like doing it", "it makes me feel better", "it makes me feel less bad", and "have you done it? Give it a try and let me know why you would do it again"

 

[R. Matey]

A decent adult interview would sure be nice

 

[futureapppsy2]

There’s also, iirc, questions about knowing one’s home phone number on a lot of developmental and adaptive behavior scales, when the vast majority of people in a lot of countries no longer have home phones.

 

[borne_before]

A decent adult interview would sure be nice

Bonus points for a malingering autism scale.

 

[R. Matey]

Also, a certain screener there are items where parents and teachers are asked to judge the child's behavior as "weird", whatever that means.

 

[texanpsychdoc]

Also, a certain screener there are items where parents and teachers are asked to judge the child's behavior as "weird", whatever that means.

Creates new languages while rocking in the middle of living room.

 

[R. Matey]

Creates new languages while rocking in the middle of living room.

It would be nice if the item actually said that.

 

[borne_before]

A rigidity because of autism vs rigidity because of accommodation by parents scale.

 

[pediatric_psydoc]

Screener that helps differentiate between rigidity in ASD vs compulsions in OCD.

 

[ClinicalABA]

There are some colloquialisms on the SRS-2 that I find some of the young parents (early-mid 20s) seem to not understand as much as an older cohort might (compounded by being raised in ESL environments, even if not ESL themselves):

-child goes on autopilot
-child does not mind being out of step

I also find that the word "fidgety" to be more difficult for these parents than I would have thought.

In addition to cohort effects with idioms, their use assumes that the raters are able to understand the nuances of colloquial speech (which is not a great assumption in that parents of children with ASD are statistically more likely to be diagnosed with or have traits of ASD themselves, including difficulties with colloquial speech)

It's tough to get too specific, especially on screeners, as they really are meant to overidentify potential cases that can then be confirmed/ruled out with a more in depth assessment that includes a structured and more in depth interview. I actually really do like the SRS-2, despite these and other flaws (e.g., asking parents if their kid is "odd"). My experience is that there is generally good correspondence between the parent ratings on the different scales and what I see during the assessment, and overall results tend to gel with parent ratings of overall socialization skills on other questionnaires I have them complete (e.g., Vineland-3).

 

[texanpsychdoc]

There are some colloquialisms on the SRS-2 that I find some of the young parents (early-mid 20s) seem to not understand as much as an older cohort might (compounded by being raised in ESL environments, even if not ESL themselves):

-child goes on autopilot
-child does not mind being out of step

I also find that the word "fidgety" to be more difficult for these parents than I would have thought.

In addition to cohort effects with idioms, their use assumes that the raters are able to understand the nuances of colloquial speech (which is not a great assumption in that parents of children with ASD are statistically more likely to be diagnosed with or have traits of ASD themselves, including difficulties with colloquial speech)

It's tough to get too specific, especially on screeners, as they really are meant to overidentify potential cases that can then be confirmed/ruled out with a more in depth assessment that includes a structured and more in depth interview. I actually really do like the SRS-2, despite these and other flaws (e.g., asking parents if their kid is "odd"). My experience is that there is generally good correspondence between the parent ratings on the different scales and what I see during the assessment, and overall results tend to gel with parent ratings of overall socialization skills on other questionnaires I have them complete (e.g., Vineland-3).

I really like the Vineland 3.

 

[borne_before]

There are some colloquialisms on the SRS-2 that I find some of the young parents (early-mid 20s) seem to not understand as much as an older cohort might (compounded by being raised in ESL environments, even if not ESL themselves):

-child goes on autopilot
-child does not mind being out of step

I also find that the word "fidgety" to be more difficult for these parents than I would have thought.

In addition to cohort effects with idioms, their use assumes that the raters are able to understand the nuances of colloquial speech (which is not a great assumption in that parents of children with ASD are statistically more likely to be diagnosed with or have traits of ASD themselves, including difficulties with colloquial speech)

It's tough to get too specific, especially on screeners, as they really are meant to overidentify potential cases that can then be confirmed/ruled out with a more in depth assessment that includes a structured and more in depth interview. I actually really do like the SRS-2, despite these and other flaws (e.g., asking parents if their kid is "odd"). My experience is that there is generally good correspondence between the parent ratings on the different scales and what I see during the assessment, and overall results tend to gel with parent ratings of overall socialization skills on other questionnaires I have them complete (e.g., Vineland-3).

What do you do when a parent swears their kid has ASD, and school vs home ratings are highly discrepant. ADOS classification is non spectrum. How do you handle that?

 

[ClinicalABA]

What do you do when a parent swears their kid has ASD, and school vs home ratings are highly discrepant. ADOS classification is non spectrum. How do you handle that?

I don't diagnose that kid. If I spend 2 hours with a kiddo and see consistent, clear, social interaction throughout the assessment, I don't diagnose- regardless of parent report or ratings (or teacher ratings, for that matter). Remember, though- I only see really young kids (generally under three) who have not had any specialty clinical or education services other than early intervention (what some states call birth-to-three). It would be really hard for one of my kiddos to mask symptoms for a whole 2 hours. I have seen some kiddos where the ADOS score was subclinical, but not all zeroes either. Remember- on the ADOS any non-zero item is pretty unusual in the non-ASD population. If I have 2 out of 3 clear category A symptoms present during assessment, with the third coming up on reports from 2 other sources (especially on peer social interaction/relationships, which may not be obvious in session) I'm pretty likely to then consider all category A symptoms met. As for Category B stuff, I'm very cautious with diagnosis seeing it in session, unless previous parent/other reports indicated it my be something that wouldn't show in session, such as repetitive routine or behaviors with specific items that I don't have in my office. If parent reports frequent lining up of soup/bean cans or repetitive sensory exploration of a shag carpet, I'm not likely to see that in session. I also tell the truth regarding how each criteria is met ("I saw 1 and 2 during the session, and you report that 3 happens in a way or at a time/place that wouldn't necessarily see in the office"). If I'm not sure, I will say so ("I'm not sure regarding ASD- Javier is obviously having some difficulties with his communication and social interaction, and you describe some repetitive behaviors and frequent tantrums. I'm not seeing enough where I'm confident to make an ASD diagnosis. I like to be 90% sure, but I'm only 75% sure). I also honestly and straightforwardly say that I could be wrong. In these cases I make sure to recommend a service to address everything I do see (e.g., speech therapy; social skills instruction using a published and validated curriculum; In-Home behavior therapy to help with tantrums and other behavioral self-control issues). I point out that if I'm correct and it's not ASD, these services should help quite a bit, and if I'm wrong and it is ASD, you might not see major improvements and you should give me a call because I missed something. I've only had few cases where parents were insistent on ASD and I didn't give a DX. In such cases I acknowledge that I could be wrong, encourage them to try what I recommend, and call/text/email if there is a lack of progress or increase in potential ASD symptoms. In some of those cases, my initial dx was likely incorrect, and did end up DX in the future. I still have not had a case where i did diagnose but concluded that I was wrong in a follow-up assessment (partially because I am pretty conservative in giving a DX). Also, I get many more SRS-2, BASC-3, Vineland Social, etc., "within normal limits" when I make an ASD dx, vs. clinically significant when I don't.

 

[R. Matey]

This came across my email and it made me think of this thread. The items are open source and I have them. Can post if there's interest. https://onlinelibrary.wiley.com/doi/10.1111/dmcn.15497

Public comment is welcomed

 

[ClinicalABA]

I really like the Vineland 3.

I think it does a really good job of doing what it's supposed to do. For the population I work with, I get pretty good correspondence between direct language testing (typically with Bayley-4 or PLS-5) and Vineland communication scores though at what for me are older kids (3-4 yo) the written subscale does get in the way of comparisons as it can inflate overall comm score even of the kiddo can only do few of the skills. Also, the v-score thing can be annoying. I getbthe rationale behind them, but scaled score are just fine for everything else so why you think your so special, Vineland.

 

[calimich]

This came across my email and it made me think of this thread. The items are open source and I have them. Can post if there's interest. https://onlinelibrary.wiley.com/doi/10.1111/dmcn.15497

Public comment is welcomed

please do!

 

[R. Matey]

please do!

Here you go: Autism Symptom Dimensions Questionnaire

 

[borne_before]

Ugh - I just saw a family who was referred to me for an autism evaluation. They were diagnosed by a neuropsychologist. The neuropsychologist gave a BASC and a GARS. That's it. No wonder they couldn't get services...

I don't think the kid has ASD. Kid was also dxd with DMDD.

 

[PsyDr]

Ugh - I just saw a family who was referred to me for an autism evaluation. They were diagnosed by a neuropsychologist. The neuropsychologist gave a BASC and a GARS. That's it. No wonder they couldn't get services...

I don't think the kid has ASD. Kid was also dxd with DMDD.

1) I don't think that is a reasonable approach to assessing autism.

2) Who determines if the patient gets services? If it is a non-psychologist, then why do they get to decide which tests are suitable? Acceptance of this position makes us look like technicians, not professionals. You don't see psychiatry being subject to this idea.

 

[ClinicalABA]

1) I don't think that is a reasonable approach to assessing autism.

It's pretty clearly not. Both are pencil and paper ratings scales. BASC has no ASD sprcific scale.

2) Who determines if the patient gets services? If it is a non-psychologist, then why do they get to decide which tests are suitable? Acceptance of this position makes us look like technicians, not professionals. You don't see psychiatry being subject to this idea.

In my state, a diagnosis of ASD made by a physician or psychologist qualifies a person for insurance funded ABA services (though self insured policies aren't subject to state law, so they may not abide). In practice, funder peer reviewers (generally psychologist) usually want to see some type of direct testing with a metric of some sort.

 

[biscuitsbiscuits]

A decent adult interview would sure be nice

Coming back to this… I’m not trained on the ADOS and don’t know the specifics of scoring, but I know module 4 is used for teens all the way through adulthood as long as there’s fluent language. I’m curious- does the scoring for this module have age and gender norms or any way to account for this large range within its algorithm? I’m having trouble finding this. Would it, for example, compare a 50yo woman’s score with a 17yo boy’s score?

 

[ClinicalABA]

Coming back to this… I’m not trained on the ADOS and don’t know the specifics of scoring, but I know module 4 is used for teens all the way through adulthood as long as there’s fluent language. I’m curious- does the scoring for this module have age and gender norms or any way to account for this large range within its algorithm? I’m having trouble finding this. Would it, for example, compare a 50yo woman’s score with a 17yo boy’s score?

It's more a criterion-referenced test, rather than a norm referenced. The ADOS is designed to answer the question "to what extent does this individual's behavior compare with the behavioral criteria for ASD," but not "how does this individual's performance compare with an age Higher or developmentally matched person form some specific group." Higher scores represent higher levels of ASD criteria-meeting behaviors, not higher deviation from some population-based orm. Since the diagnostic criteria are the same for a 17yo and a 50 yo, the algorithms are similar. There is some age banding for determining the level of ASD symptoms based on overall score (at least up to mod 3- I've never done a mod 4 and o ly mod 3 1 or 2 times), but it's not an age-based norm-referenced instrument. Module differences at the lowere ages tend to based on linguistic abilities (e.g., mod 1= preverbal/single words; mod 2= phrase speech), with later mods distinguishable based on stimulus materials (for example, you're not going play with some of the toys with an adult), and types of social questions and conversational topics. All looking for the presence or absence of specific symptoms, just doing so in a different manner. (You may know a lot of this stuff already, but I like to talk about it).

Also, ADOS should only be one piece of information on which the dx is made. While rare, I've had cases where I made a dx with the ADOS score in the "minimal-to-no" range of symptoms of ASD, and- more frequently- NOT made a dx with scores in the moderate-severe range. In the former case, the kiddo just did really well with the structure of the testing environment, had previous rehearsal with the similar toys and stimulus materials, just seemed to dig hanging out with me, didn't have access to or need for (during testingl to their typical "self-stim" or "repetitive routine" materials, etc. but MULTIPLE other sources strongly suggest criteria met. Int the latter, it's typically typically situation where the client has difficulties with only language related ASD criteria. In such cases, language delay is a likely dx. In these cases, I do like to see them get some services (eg speech therapy) and then, if language improves but social communication doesn't, I'm more like to suspect ASD.

 

[biscuitsbiscuits]

It's more a criterion-referenced test, rather than a norm referenced. The ADOS is designed to answer the question "to what extent does this individual's behavior compare with the behavioral criteria for ASD," but not "how does this individual's performance compare with an age Higher or developmentally matched person form some specific group." Higher scores represent higher levels of ASD criteria-meeting behaviors, not higher deviation from some population-based orm. Since the diagnostic criteria are the same for a 17yo and a 50 yo, the algorithms are similar. There is some age banding for determining the level of ASD symptoms based on overall score (at least up to mod 3- I've never done a mod 4 and o ly mod 3 1 or 2 times), but it's not an age-based norm-referenced instrument. Module differences at the lowere ages tend to based on linguistic abilities (e.g., mod 1= preverbal/single words; mod 2= phrase speech), with later mods distinguishable based on stimulus materials (for example, you're not going play with some of the toys with an adult), and types of social questions and conversational topics. All looking for the presence or absence of specific symptoms, just doing so in a different manner. (You may know a lot of this stuff already, but I like to talk about it).

Also, ADOS should only be one piece of information on which the dx is made. While rare, I've had cases where I made a dx with the ADOS score in the "minimal-to-no" range of symptoms of ASD, and- more frequently- NOT made a dx with scores in the moderate-severe range. In the former case, the kiddo just did really well with the structure of the testing environment, had previous rehearsal with the similar toys and stimulus materials, just seemed to dig hanging out with me, didn't have access to or need for (during testingl to their typical "self-stim" or "repetitive routine" materials, etc. but MULTIPLE other sources strongly suggest criteria met. Int the latter, it's typically typically situation where the client has difficulties with only language related ASD criteria. In such cases, language delay is a likely dx. In these cases, I do like to see them get some services (eg speech therapy) and then, if language improves but social communication doesn't, I'm more like to suspect ASD.

Thanks so much for taking the time to explain all of this. There is a lot I didn't know, and I always enjoy it when you get into ASD topics here! It makes sense why it would be a criterion-referenced test now that you've explained it, especially for modules 1-3. I wonder if your second point is especially relevant for older adults with undiagnosed ASD, who may have acquired more language/communication skills after so many years of feedback from the environmnent? That was the thought driving my original question about norms- how can we account for natural changes over the decades that module covers (or do we even need to? maybe it's sensitive enough)? It's possible my questions are based in not really knowing enough about the ados itself.

 

[ClinicalABA]

Thanks so much for taking the time to explain all of this. There is a lot I didn't know, and I always enjoy it when you get into ASD topics here! It makes sense why it would be a criterion-referenced test now that you've explained it, especially for modules 1-3. I wonder if your second point is especially relevant for older adults with undiagnosed ASD, who may have acquired more language/communication skills after so many years of feedback from the environmnent? That was the thought driving my original question about norms- how can we account for natural changes over the decades that module covers (or do we even need to? maybe it's sensitive enough)? It's possible my questions are based in not really knowing enough about the ados itself.

Here's a somewhat relevant article: The Autism Diagnostic Observation Schedule, Module 4: Revised Algorithm and Standardized Severity Scores

 

[ClinicalABA]

Coming back to this… I’m not trained on the ADOS and don’t know the specifics of scoring, but I know module 4 is used for teens all the way through adulthood as long as there’s fluent language. I’m curious- does the scoring for this module have age and gender norms or any way to account for this large range within its algorithm? I’m having trouble finding this. Would it, for example, compare a 50yo woman’s score with a 17yo boy’s score?

Back in the office and checked out a Mod-4. Unlike the other modules, there are not age bands for determining level of ASD symptoms. As an example, here are the age bands for Mod-3 (use for children and adolescents with fluent speech):

Basically, you calculate the overall score based on the quantity and quality of specific symptoms/behaviors, and then use this table to convert the total score to a comparisons score, ranges of which are tied to specific description of levels of ASD symptoms, ranging from "minimal-to-no evidence" to "high level" of symptoms.

Mod-4 scoring involves calculating scores in 2 areas (Communication and Social Interaction) as well as the combined score for both areas, and then comparing those scores to cut-offs, as follows:

Mod 4 is for use with adolescents/adults with fluent speech. It primarily involves semi-structured interviews on the topics of: Current Work or School (optional); Social Difficulties and Annoyance; Emotions; Daily Living (money, residential arrangements, and leisure- also optional); Friends, Relationships, and Marriage; Loneliness; and Plans and Hopes. During the interviews, you're not just looking at content of responses, but things like eye contact, expressed emotions (both level and extent, as well as congruence between expressed emotions and content of speech), expressed understanding of social rules (e.g., what makes a friend; personal responsibilities in relationships), extent to which future plans are realistic, etc. There are also some discrete tasks and behavior observations (e.g., telling a story from a picture book, in which you are looking for the extent of implied emotions, assignment of social roles, inference, etc.). Here is the scoring page for Mod 4, as well as the prompt/recording page for the Friends, Relationships, and Marriage interview:

As you can see, a lot of the information regarding symptoms is coming from the report of the client, and they certainly could answer dishonestly (perhaps more accurately in a manner that they think is correct, but not how they really feel). It would take me a LOT of practice and to be able to do a Mod 4. At the ages I typically do (Toddler Mod; Mod 1) it's primarily me doing different "social presses" and record the clients behavioral (usually non-verbal) responses. I occasionally do a Mod 2, where there is some coding of conversations, as well as things like describing a picture and telling a story from a book.

Hope this helps/is interesting!

All images from: Lord, C., Rutter, M., DiLavore, P.C., Risi, S., Gotham, K., & Bishop, S.L. (2012) Autism Diagnostic Observation Schedule-Second Edition (ADOS-2) Manual (Part 1): Modules 1-4. Torrance, CA: Western Psychological Services.

 

[biscuitsbiscuits]

Back in the office and checked out a Mod-4. Unlike the other modules, there are not age bands for determining level of ASD symptoms. As an example, here are the age bands for Mod-3 (use for children and adolescents with fluent speech):
View attachment 369269
Basically, you calculate the overall score based on the quantity and quality of specific symptoms/behaviors, and then use this table to convert the total score to a comparisons score, ranges of which are tied to specific description of levels of ASD symptoms, ranging from "minimal-to-no evidence" to "high level" of symptoms.

Mod-4 scoring involves calculating scores in 2 areas (Communication and Social Interaction) as well as the combined score for both areas, and then comparing those scores to cut-offs, as follows:
View attachment 369270
Mod 4 is for use with adolescents/adults with fluent speech. It primarily involves semi-structured interviews on the topics of: Current Work or School (optional); Social Difficulties and Annoyance; Emotions; Daily Living (money, residential arrangements, and leisure- also optional); Friends, Relationships, and Marriage; Loneliness; and Plans and Hopes. During the interviews, you're not just looking at content of responses, but things like eye contact, expressed emotions (both level and extent, as well as congruence between expressed emotions and content of speech), expressed understanding of social rules (e.g., what makes a friend; personal responsibilities in relationships), extent to which future plans are realistic, etc. There are also some discrete tasks and behavior observations (e.g., telling a story from a picture book, in which you are looking for the extent of implied emotions, assignment of social roles, inference, etc.). Here is the scoring page for Mod 4, as well as the prompt/recording page for the Friends, Relationships, and Marriage interview:
View attachment 369274View attachment 369275
As you can see, a lot of the information regarding symptoms is coming from the report of the client, and they certainly could answer dishonestly (perhaps more accurately in a manner that they think is correct, but not how they really feel). It would take me a LOT of practice and to be able to do a Mod 4. At the ages I typically do (Toddler Mod; Mod 1) it's primarily me doing different "social presses" and record the clients behavioral (usually non-verbal) responses. I occasionally do a Mod 2, where there is some coding of conversations, as well as things like describing a picture and telling a story from a book.

Hope this helps/is interesting!

All images from: Lord, C., Rutter, M., DiLavore, P.C., Risi, S., Gotham, K., & Bishop, S.L. (2012) Autism Diagnostic Observation Schedule-Second Edition (ADOS-2) Manual (Part 1): Modules 1-4. Torrance, CA: Western Psychological Services.

SO interesting/helpful! I'm going to take some time going through all of this- thank you for taking the time to share it!

 

[quickpsych]

A decent adult interview would sure be nice

During post-doc I used the (MIGDAS-2) Monteiro Interview Guidelines for Diagnosing the Autism Spectrum, Second Edition , alongside other measures and scales of course.

 

[R. Matey]

During post-doc I used the (MIGDAS-2) Monteiro Interview Guidelines for Diagnosing the Autism Spectrum, Second Edition , alongside other measures and scales of course.

Is there good research that supports use with co-occurring conditions? I know that's an issue with module 4 of the ADOS.

 

[borne_before]

Is there good research that supports use with co-occurring conditions? I know that's an issue with module 4 of the ADOS.

I would emphasize a developmental interview in such situations (e.g., did the young adult line stuff up when they were three, etc.). BTW in many cases, the ADOS-2 is often just given as way of making insurance happy, rather than establishing a diagnosis.

 

[R. Matey]

I would emphasize a developmental interview in such situations (e.g., did the young adult line stuff up when they were three, etc.). BTW in many cases, the ADOS-2 is often just given as way of making insurance happy, rather than establishing a diagnosis.

My point is adult autism assessment is in need of improvement.

 

[borne_before]

My point is adult autism assessment is in need of improvement.

Hard agree - I think we need to improve the diagnostic criteria as well.

 

[psychma]

I use the MIGDAS-2 and while there are behavioral observations to make on my end, many adults come in prepared by their research on Tik Tok, YouTube, etc. They know how to answer the questions and many avoid eye contact, etc. A diagnosis of autism is desired given the current neurodiversity movement.

 

[borne_before]

I use the MIGDAS-2 and while there are behavioral observations to make on my end, many adults come in prepared by their research on Tik Tok, YouTube, etc. They know how to answer the questions and many avoid eye contact, etc. A diagnosis of autism is desired given the current neurodiversity movement.

Drive me insane. Personally, I wouldn't do it without explicitly including a parent or someone knowledgeable about developmental history. In fact, I would argue you cannot ethically diagnose autism without such knowledge.

 

[psychma]

Drive me insane. Personally, I wouldn't do it without explicitly including a parent or someone knowledgeable about developmental history. In fact, I would argue you cannot ethically diagnose autism without such knowledge.

The problem in adults is that parents often have a skewed memory. “Oh you were such a smart girl. You were fine. “. I have 5 kids and my youngest is 17. She is also autistic. I don’t remember a lot about her early years. When I pull out her early psych report, I think “Oh that’s right” about some of her behaviors, interests, and sensitivities. Give me 20 more years and no early evaluation. How accurate would I be?

 

[singasongofjoy]

Ugh - I just saw a family who was referred to me for an autism evaluation. They were diagnosed by a neuropsychologist. The neuropsychologist gave a BASC and a GARS. That's it. No wonder they couldn't get services...

I don't think the kid has ASD. Kid was also dxd with DMDD

Drive me insane. Personally, I wouldn't do it without explicitly including a parent or someone knowledgeable about developmental history. In fact, I would argue you cannot ethically diagnose autism without such knowledge.

I agree you cannot ethically diagnose without such knowledge. We won't see adults for eval in our clinic without some sort of third party early history. Sometimes I help people get really creative about it -- like pediatrician notes from well child visits often have a bit of behavioral descriptoin (and working in a large health system I've decently often got access to a lot of records), bx descriptions from earlier reports, reviewing IEP/504/BSP goals, their childhood babysitter, parent of childhood best friend, youth group leader, etc. I totally get why some people don't want to involve their parents even if their parents are still alive and they remain in contact. There are other ways to piece together early history in almost all of those cases though. When people are not willing to even try to get that kind of info tbh I'll cut the 90791 short.

 

[singasongofjoy]

The problem in adults is that parents often have a skewed memory. “Oh you were such a smart girl. You were fine. “. I have 5 kids and my youngest is 17. She is also autistic. I don’t remember a lot about her early years. When I pull out her early psych report, I think “Oh that’s right” about some of her behaviors, interests, and sensitivities. Give me 20 more years and no early evaluation. How accurate would I be?

I agree on the memory of milestones being so variable. I have one kid, who is 5 years old, does not have ASD (but does have ADHD). And I ask people questions about their kids' milestones etc all the time- but I can't tell you any more for my own kid other than that she was walking and using single words by her first bday and I know that for certain because I have a video of her 1st bday party... I often see early info when skimming through electronic medical records and assume any info there is more accurate.

On a related note -- kids without ASD can go through some pretty bizarre, "omg is this asd??" phases... many of my coworkers have young kids (none of whom have ASD, we are confident) and we sometimes talk about how just absolutely odd some of their behaviors can be -e.g., at one point early on- maybe 1 yr old? 2? got weirdly attached to a jar lid- even sleeping with it. we've got plenty of rocking and hand flapping amongst the kid histories, repetitive speech (including my kid- when she gets kinda dysregulated and is trying to hold it in she'll repeat the same sentences over and over in exactly the same way). Even kids who are fairly typically developing can be "weird" AF at times - for diagnostics gotta dig into how long did that "phase" it last (was it just a phase?), frequency, context- in a way that the more terrible reports I see just don't do (the ones that just rely on rating scales, for example).

Those egg unwrapping videos and watching other kids playing with toys though? Not odd at all... I don't necessarily get it, but it seems every kid in my kid's class watches those.... it baffles me a bit. I kinda understand why kids with ASD might gain from or enjoy that, but why is my own kid so into watching that when she's got her own toys- the same ones - right there she can pretend with?

Was a good article about the GARS (and it being not great for diagnostic evals) in most recent issue of JADD- attached if anyone wants to read it.