World Autism and Asperger Conference, Salt Lake City 2013

This isn't a creative venue but it was definitely something that "fed my start" by recharging my mommy batteries.  Having a child on the Autism Spectrum means that every day involves figuring out a complex puzzle.  Things that work one day do not work the next.  Perspectives you take for granted are not shared by your child.  It is easy to get a little burnt out.  Going to this conference really energized me and gave me a great perspective on helping my daughter as she grows up (she's 10 now).  What follows are my notes from the three day conference held in Salt Lake City by the US Autism and Asperger Association (Aug 15-18, 2013).  It really only scratches the surface as far as what was presented because I could only attend one session at a time (there were generally three speakers to choose from) and I only wrote down the things that resonated with me personally.  I've had many requests to share my notes, though, so I thought it would be helpful to make them more generally available.  I wish everyone with a child on the Spectrum could have come to hear the panel of adults with Asperger's tell about their struggles and triumphs.  They were such strong, self-assured self-advocates: something every mother wants for her child regardless of whether he or she is neurotypical or struggling with Autism.  It was very inspiring to see them because in these early years it is hard to see further down the road, to see that the child who is having a meltdown in front of you will eventually be able to not just survive but thrive.

I have arranged the notes in the order of the sessions at the conference, with the session title and speakers in bold.  References to "the child" or "kids" in this context refers to children on the Autism Spectrum.

Temple Grandin (Keynote Speaker)

First of all, she is a really engaging speaker.  She certainly has limitations, but she is fun and compelling.  It was really wonderful to see her and know how far she has come.  Her main thrust was that we need to not coddle our children and foster independence.  A couple of things I jotted down from her speech:

•  Never have sudden surprises 
•  Give children a choice rather than just imposing something on them (the example she gave was when her mom wanted her to go visit her aunt’s farm.  She couldn’t choose not to go but she could choose whether to go for two weeks or for the entire summer.) 
•  Children are better able to tolerate sounds when the child initiates it (example: have the child be the one to turn on the blender) 
•  Teach with specific examples (bottom up thinking).  She said that she has a problem with generalizing things so she has to have specific examples. 
•  Encourage social interaction through shared interests (don’t force them to do things they don’t care about just for the social interaction) 
•  Don’t just say no—give instruction as to what they should be doing instead. 
•  Fear is the main emotion in Autism—Temple’s fear center is 3 times larger than typically developing brains. 
• We must start early preparing our kids for employment: jobs for teenagers, professional mentors, visiting workplaces, reading trade journals.

Collaborative Multi-Disciplinary Team Approaches for Autism Interventions in Schools – Marlo Payne Thurman, MS; Sandra R Wise, PsyD; Raun K. Kaufman; Kim Korpady

This was a panel discussion with four different behavioral specialists.  It was really interesting and I went to the individual lectures for a couple of them so more specialized information can be found later in my notes.  Here are some things I jotted down during the session:

• The goal is not to make our kids typical but to harness their skills/strengths. 
•  If you can cut down on the sensory overload in the classroom (less clutter, lower light etc.) then the child can focus on what is being taught. 
•  Give the kids some control over their environment. 
•  Help older kids to be able to verbalize their needs. 
•  Kids need to learn flexibility.  They need to work that muscle regularly or they will develop cognitive rigidity.

The Detection and Treatment of the Most Common Biochemical Abnormalities in Autism – William Shaw, PhD

This one was interesting but less than helpful to me because I just have a hard time with the idea that we have to do extreme diets or take tons of supplements.  But it did get me thinking and supported my practice of making my daughter a kale smoothie every day (and now I’ve added coconut oil to the mix).  For this one I just wrote down some of the correlations between symptoms and deficiencies that he noted.

•   Sleep disturbance – iron deficiency? 
•  Eye pain/touching/poking – calcium deficiency? 
•  Social deficits – oxytocin deficiency? Cholesterol deficiency? 
•  Violent/destructive behavior – clostridia overgrowth? 
•  Looking at things sideways – Vitamin A deficiency? 
•  High strep antibodies – can cause OCD behaviors (kids with this problem often have lots of ear infections etc.) 
• Vitamin D for sleep disturbance 
•  Coconut oil is a good antifungal

Visual Social Thinking Strategies – Michael McManmon, EdD

This one was fascinating.  I had never in my life thought of taking notes in a class with pictures.  But it really works for people who are primarily visual thinkers!  The videos he showed of people talking about their experiences were very compelling.  This could be a great tool for kids who tend to get “bored” when they are supposed to take notes.  They can make the pictures as detailed as they want and it keeps them focused and on task.  The technique they used was to fold a paper in half four times to create a grid on which to take visual notes.  Students who were previously struggling often found this to be a very effective memory tool.  The speaker also runs a college prep summer program for kids on the spectrum (ages 14-16).  More information can be found at cipsummer.com.  He also recommended letting kids interact socially online because that is often an easier way to get started and comfortable with social interaction.  He recommended a website called wrongplanet.net that is a social networking type site for kids on the spectrum (I haven’t pulled it up yet to look at it).

Social Skills, Communication, and Non-Verbal Interaction: Animal-Assisted Nature Exposure – Sandra R. Wise, PsyD

This lady was really fascinating.  She works with all sorts of different kinds of kids and adults with special needs.  She has a 6000+ acre ranch with herds of wild horses and cattle that she uses in her therapy sessions.  She started the session with interesting information about studies on the effect of interaction with nature on your brain.  She recommended a book called “Your Brain on Nature” and another one called “Last Child in the Woods” (and another one that I didn’t write down before the slide changed).  She said that one thing that is great about animals is that they are non-verbal so you have to learn how to read intentionality.  She said that horses are great for kids on the spectrum because they are very alike: horses are always hyper vigilant, for instance.  Learning to connect with the animals helps the kids learn how to interact with humans and how to read non-verbal cues.  It gives them confidence in human social encounters because they have been successful in animal social encounters.

 Interview with Pulitzer Prize winner Tim Page, DFA

This guy was great!  He won a Pulitzer Prize in music and was diagnosed with Asperger’s when he was 45 years old (I think when his son was diagnosed with Asperger’s).  He talked about how difficult it was growing up without a diagnosis and how hard life was for him because he didn’t understand why he was different and what to do about it.  He talked about how much better his life is now because he can self-advocate and he knows better what will help him and what situations to avoid entirely.  I think it is great to hear stories like this because even though it is hard to raise a child with Asperger’s, it is harder to be a child with no one there to advocate for them and to help them understand themselves.  This guy turned out great and has a lot going for him but our kids have a leg up because of the help we are getting for them.

Behavioral Issues and New Approaches – Raun K. Kaufman and Kim Korpady

This is the session that got me the most excited.  I really like their approach to behavioral issues.  Raun runs The Autism Treatment Center of America’s Son-Rise program (www.AutismTreatment.org), which was a program that his parents created to help him when he was diagnosed with severe autism at the age of three.  You should see him now: so gregarious!  I really liked the way they think of addressing things.  They said that rather than forcing our children to conform to a world that they don’t understand, we need to enter their world first.  Their mantra is, “they show us the way in and we show them the way out.”  Also, they reminded us to have joy in the child you have right now (rather than just focusing on things you want to help with/change).  They shared a couple of techniques with us (which I thought was wonderful—not just talking about theories, but practical techniques we can use right away).  

The first concept was “joining.”  The idea is that the repetitive/exclusive behaviors the child does (the “stim”) is a way of coping (and “island of predictability in a sea of unpredictability") and so we shouldn’t try to stamp them out.  We should participate with them and use that as a way to bond with our child.  This is not to say that you follow the child around and do whatever they do or that you participate in bad behaviors.  But rather than attempting to stop the child from doing what they love: do it with them.  If they like to line up cars in a certain way then set up your own line of cars a few feet away.  If they like to stare at a spot on the wall then stare at your own spot on the wall.  Kim told the story of a child whose stim was to find a spot on the wall and stare at it for hours.  Occasionally he would bring his hand up and carefully bring it down in front of his line of vision.  When he and his family came to the center he found his spot on the wall and began staring so the therapist (Kim) found her spot on the wall too.  When he raised his hand, she raised her hand.  Apparently they did this for three whole days (never saying a word—just staring at the wall).  At the end of the third day he just turned to her and said, “I like being here with you.”  When she asked why, he said that he liked that there was no pressure.  Talk about breaking your heart a tiny bit.  Poor kid!  It must be incredibly stressful to be in his situation.  Anyhow, after that he didn’t stim at all for the rest of their time there.  He talked and interacted with his parents and the therapist.  Pretty amazing.

They also talked about we have to get a “green light” from the child before they are able to learn something new (like being flexible etc.).  When the child gives you a red light (when they are clearly overwhelmed or having sensory issues or whatever) then that is the time to join them in their stim and build the relationship.  Then when they give you the green light you can teach them something new.  They said to write down three things your child really loves.  Play a game or interact with them related to one of those three things and in the middle introduce something that is different.  The example they gave was a girl whose repetitive/exclusive behavior was acting out the Jerry Springer show.  Apparently she couldn’t interact with anyone in any other format.  She would use a spoon or any other object as her microphone and interview people like she was Jerry Springer.  Her parents hated it, as you might imagine, and were horrified at the idea of “joining” her.  But they decided to try it and they set up her bedroom like it was a sound stage, complete with a microphone.  The girl was totally excited and they all played along, having a Jerry Springer style show.  In the middle, the mom asked the girl a question (which breaks with the show format so you would think it would upset her).  The girl wasn’t upset, though.  She answered the question without skipping a beat.  Eventually more out-of-character questions were asked and by the end (this took about 2 hours) they were all sitting in a circle having a normal conversation.  Wild, huh?

Another thing they talked about was how we need to reverse our responses to maximize the behaviors we want and minimize those we don’t.  He said we unwittingly teach our children to be challenging by our responses to challenging behavior.  He noted that behaviors like hitting/tantrums etc. is a form of communication (which is good) but we want them to communicate in another way.  He likened it to the child speaking to us in Russian.  We want them to speak to us in English.  Therefore we shouldn’t be asking “how do I stop the tantrum?” but “how can I get my child to speak in English instead of Russian?”  He said we should note what we do when confronted with challenging behaviors.  Are we teaching our kids that we understand Russian?  Basically, if tantrums get the child what he or she wants then there is no reason to stop tantruming.  Also, instead of saying, “don’t hit” we should encourage them to do the more positive behavior (because all they hear is “hit” “hit” “hit” – it is better to say something like “be gentle”).  They noted that our response to a challenging behavior is often huge while our response to sweet behavior is often small.  For instance, if a child asks you nicely to do something you might say, “Let me finish this up and I can help you in 5 minutes” but if WWIII breaks out in the other room you drop everything you are doing to go break it up.  They recommended turning the tables: give a slow, relaxed, normal reaction for behaviors we want to minimize (signaling that you don’t understand Russian) and a big, fast reaction for behaviors we want to maximize (signaling that you move when the child speaks English).

School Transitions: Elementary, High School and Beyond – Marlo Payne Thurman, MS

I really liked this lady too.  The take-away for me on this one is that we have to help our kids to be competent and independent.  It’s really easy to step in and do things for our kids and, because it does take them longer to learn things, it’s really easy for them to suddenly be 15 or 16 and not know how to do basic things that they need to know to live on their own (like navigate a grocery store).  Here are some of the things I jotted down during her lecture:

• Autistic kids have a greater range of sound that they can hear (so they can be bugged by things we can’t even hear!) 
•  Kids need down time, recovery time, and interest-based activities 
• You can ask for more frequent meetings at school.  You don’t have to stick to the annual IEP meeting.  You can have much more frequent check-in type meetings (weekly even!) 
• Middle school kids need:

a.       Formal training and practice in the skills of executive functioning

b.      Begin post-high school planning at 11 or 12

c.       You can have modified school work or shortened school day

d.      Mom -- Develop a method of communication that will work with multiple teachers

e.       Academic projects should be interest and strength driven

f.       Technology needs and uses

g.      Age appropriate social stories and scripts

h.      Social opportunities via online social media?

i.        Don’t avoid their questions: answer them fully

j.        Understand and explain “late bloomers” (aka delays in any kind of development)

k.      Teach and support self-advocacy and “niche” construction

l.        Provide clear, natural consequences for behavior

m.    Allow for privacy and personal space

n.      Offer bully-proofing strategies

Panel: Self-Advocacy – Challenges Throughout the Lifespan

This was a panel of five adults with Asperger’s (some diagnosed as children and some diagnosed as adults).  They spoke about their experiences with Asperger’s and had some very poignant things to say.  I’m sure I won’t be able to convey all of it, but what I came away with is that our kids need to make sure they know who they are and what they need.  We are not always going to be there to advocate for them.  They have to know how to advocate for themselves.  They have to know they have Asperger’s and what that means.  They have to be able to figure out what they need and how to ask for it.  Each of the people on the panel had such compelling stories.  It was a very touching and emotional session.  Several of them had siblings or friends on the spectrum that had committed suicide because they couldn’t self-advocate and they couldn’t handle the struggles they had.  They talked about how important it was to find appropriate coping strategies (one man strongly encouraged everyone to teach their kids how to meditate so that they would know how to quiet their minds).  They also talked about not caring about other people’s ignorance regarding how high functioning they are and the common perception of Autism (ie severe Autism).  They said, “You know who you are and what you need.  It doesn’t matter what other people think.”  I loved how secure they were in their own skin and I want to make sure my daugther has that same confidence.  I want her to know how much I value her independence and how much confidence I have in her abilities.

Oral Health Care for the Dental Patient with Autism – Robert E. Rada, DDS

This was an interesting session because he gave some great strategies for tackling the problem of dental care.  He acknowledged that the extreme sensitivities of kids on the spectrum make things like a dental cleaning 1000% more difficult to handle than they are for typical kids.  So with things like toothbrushing you really have to tailor it to the kid and do just what he or she can handle.  Then you can slowly increase the time spent brushing etc.  I thought it was interesting, too, how sometimes the chewing habits these kids have are really coping strategies for mouth pain and that behavior in general is sometimes highly impacted by undiagnosed dental issues.  My daughter has a really difficult time going to the dentist.  One time she bit the hygienist three times and ran out of the office (after hitting, swiping, yelling etc.).  That was a fun day.  The next visit we gave her a low dose of Valium prior to the visit and it went better (no biting) but it was still touch and go.  The scary thing, though, is that those were just regular cleaning appointments.  I dread her first cavity!  One important thing Dr. Rada said, though, was that these kids aren't generally prone to more dental problems than the rest of the population: the increase in dental issues is entirely related to how difficult it is for them to properly maintain their teeth because of the sensory issues.  So keep at it!  This stuff is important.

Strategies for the dental visit itself:

•  Have the dentist put the lead apron on the child for the cleaning (for weight) 
•  Tour the office prior to the dental appointment 
•  Limit time in the waiting room 
•  Remember the sensory issues – lights, sounds of the handpiece/suction/etc., smells, the touch of the suction tip 
•  Have a timer so she can see how much longer it will be or have the hygienist count to 5 and stop for a break (then count to 5 again etc.) 
•  They don’t have to lay back in the chair—it can be on a more comfortable incline so the child doesn’t feel as vulnerable. 
• Allow the child to say what is ok and what isn’t, but only give them a choice when there are choices (avoid overusing the word “ok” – like “I’m going to start now, ok?”  This makes the child think she can say, “No, it’s not ok.  Don’t do the cleaning!” when, in fact, the child doesn’t have a choice on that one.) 
•  Take relaxing breaths in the waiting room before the visit 
•  There is a website called “Look At Me Now” which does video self-modeling for a number of different situations.

Experimental Opera: A Parking Lot for Hyacinths

A Parking Lot for Hyacinths

The Deseret Experimental Opera Company

BYU

August 9, 2013

Disclaimer: I am just an amateur musician so what follows will be general observations from the point of view of an average audience member and not a formal critique of the music.

I walked into this knowing absolutely nothing about it other than the fact that it was experimental opera and that it was opening night.  After wandering around the construction, finally finding a way to the visitor’s parking lot, and speed walking to the theater (we made it on time!) we got to sit and wait for the performance to start…over 20 minutes late.  I know things happen, but, guys, we dashed.  We didn’t meander.  We dashed.  And we should have meandered. 

But enough complaining.  I should start with what I loved: being in the theater and experiencing the energy and excitement of people creating something.  We were all doing something new tonight and that was energizing!  We were sitting on row B so I had an unobstructed view of an incredible violin solo.  She sat maybe two feet away from me and blew me away with her precision and passion.  I could have left after the violin solo and felt like I got my money’s worth.  But then I would have missed my other favorite part: Michelle Alexander.  Wow.  She was engaging both in her speaking parts and in her singing parts.  She was hands-down the best thing on stage.  Part of that may be that she had the most lyrical of the parts (and I respond more to a more traditional sound) but, really, the main thing was that she had a powerful voice and was very confident.  I wanted to hear more from her.

For those of you who have never been to an experimental opera and don’t have any experience with this sort of music, let me tell you what to expect: screaming.  Lots of it.  At the end everyone on stage (even the conductor and the instrumentalists) were screaming at the top of their lungs.  Before that we had the men and women of the chorus doing contrasting screaming styles (which was actually very interesting to listen to) and then the odd scream here and there just to make sure you’re still awake (a very real danger when you’re a sleep deprived single mom—if you aren’t engaging I *will* fall asleep).  There was also the obligatory breaking of the 4^th wall with an aggressive approach to the audience.  Unfortunately, either the chorus was too timid or too polite to be fully committed to this aggression.  I was in the middle of the first row of audience members and nobody made eye contact with me.  They were all looking just past my head.  They may have been making eye contact with people a row or two back but how safe is that?  Both parties have a nice barrier of people in between them.  There’s very little chance that the actors were going to crawl over me to get at the people in the third row so I highly doubt the audience members were that intimidated.  I, however, had a fighting chance of being intimidated and they blew it.  I have to admit that I had a split second desire to suddenly sit forward in my chair and stick my face right in the way of the actor who was so carefully avoiding my gaze.  In the end, I was too polite as well.  I should have done it, though.  It would have been interesting to see his reaction.  There was also a section where the actors/singers and instrumentalists grow bored of listening to a character and break character to do things like stretch and play card games but even that was done very politely and in hushed voices so as to not cover up the monologue.  I wanted them to speak in normal voices and really be uninterested in her speech.  Believe me, this actress (the aforementioned Michelle Alexander) had the pipes to be heard over the crowd.

The other thing you’re going to hear a lot of in experimental opera is atonal music.  I may be using that term improperly so let me tell you what it means to me: note combinations that make you wince a little bit.  This may be a happy wince.  There were some happy winces with the violin solo, for instance.  And then there was the character who was, literally, Johnny One Note.  The poor actress had to sing all of her lines on one note.  And the poor audience had to listen.  It was in line with the character (the heartless automaton who valued facts over emotion and wore mostly black) but it got tiresome very quickly.  The whole character was tiresome, actually, because it seemed like such an easy, clichéd character.  The actress/singer also had a lovely voice, but didn’t really get to show it off.  Now, I know that characters in opera aren’t terribly nuanced—it’s all about the music.  Perhaps that’s why this character’s lack of dimension bothered me when it didn’t bother me with other characters.

One last thing: I think the stage was set up very effectively.  I loved the use of paper plates and Styrofoam cups as a backdrop and the stage pictures they created were interesting to look at.  I also really loved having the instrumentalists right in front of us (especially the percussionists with all of their atypical noise sources).  There was a wonderful spirit of whimsy throughout the entire production--from some of the visual choices to characters like the Old "Wise" Tree and musical interjections like the Coca-Cola Jingle.

Overall, I would say that this was a successful evening, even though it was different from the sort of production I generally attend.  Definitely fed my start tonight!