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.
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