Mother Talkers

Autism on video

by Sue in Queens

Wed Oct 17, 2007 at 04:24:46 AM PDT

There's a new web-based "Autism Glossary".  It provides side-by-side videos of children with Autism and related disorders and typical children, and shows very clearly some of the early symptoms of autism.  I've watched most of it, and think it's interesting and balanced.  The target audience (in addition to parents) is professionals who can make early referrals for service.  There's alot we don't know about autism, but one thing we do know is earlier access to services is better.

But leave it to the media to make this a "mom scare" controversy!  

Yet some researchers fear the video glossary is certain to be troubling for the parents of children without autism, too, because the behavior of kids without the condition can resemble that depicted in the videos.

Rather than saying how cool it is to put a real face to these symptoms, let's float the idea that parents (face it, they mean us helpless moms) can't deal with this information in a reasonable way!  They picture us running with our healthy kids to pediatricians and wanting to see autism.

In reality, the truth is the opposite.  It's more likely that either parents don't recognized the early, subtle signs, or that the parents 'know' something's wrong but the doc doesn't see it or doesn't listen.  

But Amy Wetherby, a professor of communications disorders at Florida State University who helped create the site, said the site would embolden parents to persist when doctors don’t listen to legitimate concerns about a child’s behavior. As she told the Associated Press, sometimes “parents are the first to be concerned, and the doctors aren’t necessarily worried,'’ she said. “This will help give them terms to take to the doctor and say, ‘I’m worried about it.”’

Emboldening parents! What a radical idea!!

Tags: autism (all tags)

Permalink | 17 comments

  • too short (0 / 0)

    I felt the clips were too short and not as illustrative as I would have hoped. And while I understand they want to focus on younger ages, some older kids would be helpful too.

    I hope they'll add longer and more diverse behaviors to the clips.

    Miles and His Favorites: The World As Seen By an Eight Year Old

    by Hillary on Wed Oct 17, 2007 at 07:16:15 AM PDT

  • I couldn't get the videos to load, (0 / 0)

    however, I think empowerment is always good.  

    by tjb22 on Wed Oct 17, 2007 at 07:44:25 AM PDT

  • hmmm (0 / 0)

    Some of these clips are clear, but others could be picking up things besides autistic-like behaviors.  The sensory example with the kitty koosh comes to mind.  The kid was apprehensive about the toy and sought comfort from his parent (which is used as the "typical" example for the child who's afraid of the penguin, so that's confusing).  And although he's afraid of the kitty, he does touch it, and then set it aside.  It's hard in that example to tease out sensory defensiveness from a child's reasonable preference.  It gives the impression that all children should like Koosh animals, or else their parents should worry.

    I also noticed that one of the examiners was pretty intrusive -- lots of questions and non-sequiturs ("I have a dog at home!").  The examiner who spent more time being companionably quiet seemed to draw a child out, which is my experience, too.  Kids sense excessive demands and sometimes pull away in response.  I was wondering if the quieter clinician would have coaxed more reciprocal language from the "red flag" child.

    Interesting... Thanks for the link!

    by mamacita on Wed Oct 17, 2007 at 09:32:38 AM PDT

    • length of clips (0 / 0)

      Didn't you also feel the clips were a bit too short overall to get a really good impression?  Especially for a parent, who might not pick the subtler signs up as easily?

      Miles and His Favorites: The World As Seen By an Eight Year Old

      by Hillary on Wed Oct 17, 2007 at 09:53:47 AM PDT

      [ Parent ]

      • I think for a parent (0 / 0)

        without a lot of exposure to the elements that are being highlighted, it might be pretty hard to tell the difference between "typical" and "red flag."  A moment-by-moment narration might help with that.  That's something I do with families during an assessment when I'm seeing behaviors that argue for or against autism: "See how she looked at the playdough, then looked at P., then smiled and looked back at the playdough?  That's not a very autistic thing to do."  OR, "Do you see how bothered he is by things that he thinks are 'broken,' to the point that he can't happily settle in to play, or accept that the 'S' is missing from the alphabet and move on?  That's a little perseverative, and it's interfering with his use of the environment, and could potentially interfere with his ability to access the school curriculum.  Do you notice this at home?"

        Often it's these conversations with parents, where they confirm that what I'm seeing is typical behavior for their child, or is very unusual and only happening with us in this strange environment, that helps me develop a bigger picture.  I also observe kids at school, if they're enrolled, and elicit a lot of parent and teacher input.  Because sometimes a kid who doesn't like a Koosh kitty is just a kid who doesn't like a Koosh kitty.  And sometimes a kid in a lab doesn't act like himself.

        The other thing that might be puzzling for parents is the example of the little boy who asked, "What's that?" over and over while looking at a book, almost as a stand-in for meaningful conversation.  Then, as an older child, he used the same repetitive questioning -- he still wasn't conversing.  So a parent might wonder, "What was the value of early intervention, if he's still not conversing more naturally?  What kind of therapy helps a child engage in spontaneous conversation?"

        Sorry, I've gone on too long.  Can you tell I'm just the tiniest bit passionate about this?!

        by mamacita on Wed Oct 17, 2007 at 10:11:44 AM PDT

        [ Parent ]

        • I guess... (0 / 0)

          what I was looking for was someone who looked more like Miles:  A highly verbal and emotionally intense child as opposed to the more typical and expected lack of affect and echolalia.

          And there are things, like his arm flapping, that he really only does at home or at my parents' house.  He knows it's not cool to do elsewhere.  So, the psych has never seen it.

          Miles and His Favorites: The World As Seen By an Eight Year Old

          by Hillary on Wed Oct 17, 2007 at 10:48:42 AM PDT

          [ Parent ]

          • I wonder (0 / 0)

            if these videos are filled with younger children because that's who the project is hoping to help identify?

            Has anyone recommended any services for Miles?  I would be curious to know what kind(s) of therapy he is doing, what the goals are, and how it's going.  Some children with Asperger's are asked to learn scripts for social interactions, because chit-chat doesn't always come naturally.  It's similar to having learned to only flap in "safe" environments -- "Here's what I do when I'm at school" or "Here's what I say when someone asks how my day is going."  Some children learn to grade their emotional responses, or to save up their strong reactions for a more appropriate place/time.  Sometimes that happens in OT.  Anyway, just curious.

            by mamacita on Wed Oct 17, 2007 at 11:37:52 AM PDT

            [ Parent ]

            • still in diagnosis mode (0 / 0)

              We're still in diagnosis mode.  Within a week or so, I think we'll have that settled.  The psychologist we've engaged seems interested in getting him into speech therapy and OT. She has some professionals she likes and also believes she can write up the report so that he can get ACCESS, which is a state program that would give him 50 speech therapy sessions a year for free.

              He had an extremely bumpy start to this year, but last week and this week, he seems to be doing better.  I'm not sure why, perhaps it is just that he does settle in after a while but it takes him longer and his emotional outbursts are so much more dramatic than average kids.

              If I had to guess I'd say he's not very high up on the Asperger's scale.  I am hopeful with some practical therapies, he'll find a way to work within the world and make the most of his gifts.

              Miles and His Favorites: The World As Seen By an Eight Year Old

              by Hillary on Wed Oct 17, 2007 at 05:06:07 PM PDT

              [ Parent ]

              • he has so many strengths (0 / 0)

                from what you've described.  I imagine he'll make a fantastic adult.  Sometimes school can be hard, as it requires a lot of conforming and not always for easily discernible reasons.  And then with all the options of adulthood, life gets easier.  I'm glad to hear things are getting better.  

                Something you may want to keep in mind as you go through the diagnostic process is that if three different professionals saw him, you might get three different diagnoses.  That's one reason I like to focus on needs rather than labels.

                Good luck getting to the home stretch with all this!

                by mamacita on Wed Oct 17, 2007 at 05:36:47 PM PDT

                [ Parent ]

        • Who do I talk to? (0 / 0)

          We've been concerned about DS, 4, lately and his preschool teacher has been worried about him too.  His social skills and desires are not what she would like to see, he has some focus problems (listening and following directions, or even responding to direct questions)  Anyway, I'm obviously not asking you for a diagnosis but I'm wondering who it would be best for us to talk to.  We've made an appointment with our pediatrician.  We've been reluctant to contact the school district's special ed. dep't.  Are there private specialists to help with this?  Thanks!

          by hazel on Wed Oct 17, 2007 at 05:36:34 PM PDT

          [ Parent ]

          • tell me more about (0 / 0)

            why you're reluctant to contact special ed.  If you lived in my area, I would be one of the people on the team you would see (others are speech therapist, occupational therapist, school nurse, and physical therapist), and I am sort of partial to preschool assessment teams :-)  It's a multidiscplinary assessment, which in my opinion is the state of the art.  We do a play-based assessment.  This is not something you can even buy privately.  You can go to specialists individually, but I don't think the assessment is as rich or conclusive as when all disciplines work together at the same time.  That said, there are preschool assessment teams comprised of professionals who lack the training early childhood evaluations require, who would really prefer to be working with older kids.

            If I knew more about your reluctance, maybe I could guide you better.  I know some parents are concerned about kids being labeled and worried that the label will somehow limit their child.  I think that can be a legitimate concern.... another reason I'm more needs-focused than label-focused.

            Sometimes children are diagnosed (or referred for additional assessment) by speech therapists, who can tell whether a child is using language typically.  Your pediatrician may be able to refer your child for a speech eval.  Others begin with an occupational therapist, who assesses fine motor skills and sensory integration.  Kids on the spectrum sometimes struggle in one or both of those areas. This place in Denver offers assessment and treatment from what looks like an OT perspective.  Sometimes a pediatric neurologist or developmental pediatrician is consulted.  In my experience, regular pediatricians aren't the most reliable, partly because they don't spend a lot of time with a kid.  Autism needs to be teased out from shyness, language delays, and quirkiness, and that takes time. In California, there are Regional Centers that address developmental delays, including autism.  Maybe there's something like that in Colorado?

            I know this is long!  Let me know if you have other questions.

            by mamacita on Wed Oct 17, 2007 at 06:33:52 PM PDT

            [ Parent ]

            • labeling (0 / 0)

              I think the labeling aspect is a big part of it.  I'm nervous about him being but in this "special ed" box, mostly I guess because in my childhood schooling experience (before integrated classrooms) we almost never saw those kids and they were socially off-limits to other kids.  I know things are different now but I still worry.

              I guess part of it too is admitting that he really might have a problem.  He is in speech therapy - I talked to his therapist and she wasn't too worried, but she also doesn't see him in social situations with other kids.

              Since I don't have much experience with our local district, I'm wary of trusting them when I don't know any of them or their qualifications.  Maybe we should move into your district!  I'm sure they must be great, we live in a very good school district, I just feel unsettled about it.  I suppose I share my son's characteristic of not wanting to warm up and trust someone until I know them a little better :)

              I think that may be the route we take in the end.  We're starting with the ped. who specializes in some behavior things.  Maybe DS's lack of focus and attention is more ADD-related.  I really don't know.  

              by hazel on Wed Oct 17, 2007 at 06:50:31 PM PDT

              [ Parent ]

              • call the school district (0 / 0)

                and just ask what the options are for special ed for 4 year olds.  You don't have to give your name to inquire.  In our district, we offer a blended-inclusion classroom -- 15 typically-developing kids, and 5 kids with special needs that aren't severe enough to require a smaller class.  There are two credentialed teachers, one general ed and one special ed, plus at least one special ed aide.  And because of the special ed kids, there are other specialists (OT, social skills, and speech therapists) in and out of the classroom, lending even more adults to the ratio.  It can be a good place for kids who just need a bit more support.

                So maybe your district has something like that, which can be just right for high-functioning kids.  I have worked in districts that had only special day classes, which is unfortunate because the high-functioning kids are then the role models, and they don't have any typical peers to learn from.  It's also good to keep in mind that special ed is not forever.  We exit children once they've met their goals, sometimes before kinder!

                by mamacita on Wed Oct 17, 2007 at 08:44:40 PM PDT

                [ Parent ]

            • oh, and (0 / 0)

              Thanks for the link in Denver.  I'm checking it out right now...

              by hazel on Wed Oct 17, 2007 at 06:53:14 PM PDT

              [ Parent ]

  • Mmm (0 / 0)

    I don't know about these videos.  

    Personally, I feel for all things developmental with children, the simplest information is best for parents, maybe just a basic checklist.  

    Anymore just ends up being information overload for some parents who are going to overanalyze.  

    For other parents, they aren't going to have the time or even think of looking up such videos to watch, so a simple checklist would be better for them too.

    by NJmom on Wed Oct 17, 2007 at 10:10:34 AM PDT

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