Jan Maka was a child like any other, until his family's lives were turned…
Autism: The Road Back
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- Reviews
- Citation
- Cataloging
- Transcript
Autism: The Road Back charts the personal journey of three families with children who have been diagnosed with Autism Spectrum Disorder. It talks to parents, service providers, and experts in the field about assessment, diagnoses, and options available for treatment, and provides guidance for families trying to navigate their way through the challenges of ASD in the first six years of their child's life
Citation
Main credits
Bartlett, Sharon (film director)
Bartlett, Sharon (film producer)
Bartlett, Sharon (screenwriter)
LeRose, Maria (film director)
LeRose, Maria (film producer)
LeRose, Maria (screenwriter)
LeRose, Maria (narrator)
Other credits
Camera: John Dowell, Max Lindenthaler, George Colmer, Lez Morrison; editor: Michael Taylor; original music: Lesley Sutherland, Fresh Air Studio.
Distributor subjects
Children and Youth; Families; Health and Medicine; Autism in children; AutismKeywords
WEBVTT
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[sil.]
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Normally, he is very
isolated and very alone.
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Temper tantrums are fairly
common with Taylor.
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What have you got? I could remember,
he was standing right here
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and all of a sudden, he just
gone, like the eyes were blank
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and I would go, Colin, Colin
and then he come back.
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A, little a. My kid is evaporating,
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okay, the person I knew, as a
child, and who he is, as a person,
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is disappearing in front of my eyes.
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The goodness part of this is that, yes, your child
has a disorder but there is absolutely no reason
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why this child cant lead
a happy, contented life.
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[music]
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No, no, no. Gentle feet.
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No, no.
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Gentle, that hurts. Three year old, Blake Gerlach(ph) is
here at B.C.’s Childrens Hospital with his mom, Cyndi,
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to meet with child psychiatrist Dr.
Vik Dua.
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My first concerns with Blake is, is the
lack of speech. I had some concerns
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because he seemed to not know what to do with children
his own age. He would get aggressive with them,
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he would hit them. Blake is
being assessed for autism,
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a disorder that impairs a child’s ability
to communicate and to interact with others.
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Autism is a brain disorder, children
are born with. The best evidence
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we have right now, is that it probably occurs with an insult to
the brain somewhere in the first twenty eight days of gestation.
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Well, I got. No… Autism
is a spectrum disorder.
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The symptoms can range from mild to severe and
no two children have exactly the same symptoms.
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There’s a variety of terms autistic
disorder, autism, Asperger’s disorder,
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Asperger Syndrome, pervasive
developmental disorder,
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all of those terms represent one
definition of a small piece of
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this large autism puzzle.
It’s a lifelong disability,
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four times more common in boys than in
girls. The symptoms usually don’t appear
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until 18 months or later. The classic
example is a child won’t learn to speak,
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won’t use any language in any communicative
way, umm… they don’t make eye contact,
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they may begin to engage in some repetitive
behaviors like flapping their hands
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or finger movements or twirling toys or looking
at things from the side of their eyes. Ready.
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Set. Set. Go.
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There is no single medical
test used to diagnose autism.
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In B.C., it’s done by a
multi-disciplinary team.
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A speech and language pathologist, a pediatrician,
and a psychologist or psychiatrist.
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Children of this age,
particularly, the younger ones
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are really complicated to assess and
have the clear answers. You really need
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different perspectives on the problem
in order to get a clear answer.
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Ready. Set. Set. Set, go. Go.
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Doctor Dua observes
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how Blake behaves compared
to a typical child his age.
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With the balloon he was able to carry
out the request to a certain degree.
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The extent of his requests
was dropping it on me.
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He… he did get it to my hand at one point.
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[sil.]
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Dr. Dua waits to see if Blake will
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ask him to blow up the balloon again.
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I didn’t get the sense other than him
dropping it on my lap and in my hand,
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that he was actually engaging with me.
Transit, yes, I know you are another person
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who has this power to blow up this balloon
and I need to get you to… to listen to
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what I want you to do and then do it.
With the bubbles, he showed an interest
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in the bubbles obviously, so you got it, you knew that he
had an interest and motivation and wanted to continue.
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At no point in that did he ever make eye contact with
you. Even in the quest when you’re pushing it down
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other than he wanted to blow it on my face.
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[sil.]
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One week after this visit, Blake
was diagnosed with autism.
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[music]
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The Autism Society of B.C. is often the first
stop for parents looking for information
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about how to find help for their child. There’s a number of
things that we could help you with. Probably, the first thing
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you want to do is get a copy of our new parent
package. The B.C. government provides money
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for treatment up to $20,000 a
year, for a child under six.
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After their sixth birthday, that
amount drops to 6,000 a year.
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This money is paid directly to the
parents and then the onus is on them
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to find treatment. The
parents rule is to act
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as we call with a case manager for their child’s
intervention. You respect that what that is.
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You’re the interface to the medical team to the
family, you’re the interface for the school
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to the family, you’re the interface for whatever other
sort of intervention you’re doing with your child.
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At a point in time, where you’re reeling
from the diagnosis and trying to deal with
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all the emotional issues around that, and people are
telling you that, you know, you need to do this quickly
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because early intervention works the best and,
you know, you have a wind of opportunity here,
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you also having to read
volumes on uh… competing
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uh… models of intervention. You’re having
to interview different consultants and say,
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\"Well, which consultant would be the best for my
child, or what style.\" Plus, it’s in a culture
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where there’s a lot of passion umm… and…
and picking a particular orientation
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can be very difficult. So, it’s… it’s
very difficult I think for families.
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So my favorite part about
Taylor’s play was when Park put…
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put the guy to sleep with the flower.
I just put them up
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like pushing on his eyes. When Tamara
and Mike Leger started a family,
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they had what many would consider an ideal
life, their careers were on the fast track.
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Tamara was an executive in the dot com
boom and Mike worked in advertising.
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They had two healthy sons.
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The eldest Taylor started to walk and
talk at an exceptionally young age
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and his little brother Winston appeared to
be following in his footsteps. By 8 months,
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he could count to 20 and he knew
all the letters of the alphabet.
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A, B… A, B, C, D. Little a… But
shortly after this video was taken,
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Winston started to change.
I think, when we knew
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that there was something really wrong was
just an inflexibility on certain things,
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like, all he ate was poured, sure it is,
it was poured, poured, poured, poured.
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It’s that, you know, go outside this box
and you get freak out, you get episodes,
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you get, you know, meltdowns.
These tantrums became more common
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and they often occurred when they were in public places like
a shopping mall. There were tantrums that wouldn’t last
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5 minutes or 10 minutes, half an hour, 45 minutes…
Yeah, freaking out. …until you would like
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a freaking major out… We are in the car, we are in the car
half way home, he’s still… …he’s still going, still going…
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…he’s still freaking out. …like, screaming, and crying,
and pounding his fist, and popping his seat belt,
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and… and banging his head,
you know, and head butting,
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and angry, just angry. They also
noticed that while Winston would play
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alongside other children, he
wouldn’t actually play with them,
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he seemed to be pulling more and more
inside of himself. What’s your name?
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Winston. What’s your name?
What’s your name?
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Kevin’s asking you question, Winston. What’s your
name? Winston? It was like seeing him evaporate.
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It was the eye contact. And I remember at one
point, cupping my eyes, like, around and going,
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you know, Winston, look at me, look at me and he be, like,
you’re this close and he’s like looking here and looking there,
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looking here and looking there and just not engaging.
And, I mean, as a parent, like, it’s, like,
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you’re… you’re thinking, you know,
this is a worst case scenario,
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I’m losing my child right in front of my
eyes. Just after his fourth birthday,
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Winston was diagnosed with
mild high functioning autism.
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The future is just kind of blown out the window
and as a parent, that was a real struggle
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because you get the diagnosis and there was no
concrete help, it was, like, you have autism.
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Here are three social workers
and a box of Kleenex to discuss
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what your future will look like and I
would have been okay with the diagnosis,
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if somebody was there to treat my child. Yes, you
have autism, here’s what we’re gonna do about it
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umm… and that was, that
was not provided for us.
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And so, we spent a year in a really dark
black place trying to find a way out.
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[sil.]
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Dr. Pat Mirenda is currently
heading up a research project
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evaluating the outcomes of early intervention
programs for children with autism in B.C.
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we know a few things are really critical
about intervention for kids with autism.
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The first one is to start
early, early is better period.
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Umm… 8, 12 months, if the diagnosis
is made 18 months, 2 years, whatever.
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Umm… It is really important to start early.
The second piece is intensity.
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There needs to be a lot
of whatever it is, right?
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Umm… Not, you know, well, that you go to preschool a
couple have of half days a week, that’s not enough.
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It needs to be intensive, it needs to be one to one,
it needs to be designed individually for that child.
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The Autism Society can direct parents
to a list of behavioral consultants
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provided by the provincial government.
These consultants set up
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treatment programs for children with
autism. They offer different approaches
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to treatment but these approaches are not indicated
on the website, so parents have to do their homework.
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Parent wants to talk about consulting.
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You want to know what their feelings are, you
want to know what their availability is,
00:11:05.000 --> 00:11:09.999
you want to know where they got their training, you
know, what level of training do they have, is,
00:11:10.000 --> 00:11:14.999
you know, what was their specialist or specialty,
you know, when they were getting their training,
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you would want to talk to references
provided by the consultant,
00:11:20.000 --> 00:11:24.999
ideally two, three, four families
that they’re working with.
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I’m gonna build space station then, it’s fine.
To build the ships, okay? Like many parents,
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Mike and Tamara, first, tried on their own to
find something that would bring Winston back.
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They had some success using
these two books as a guide.
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But they soon realized that to move Winston to the
next level, they would need professional help.
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[sil.]
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Good morning, Early Autism Project. Can I help you?
Mike and Tamara found the help they needed, here,
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at the Early Autism Project. Glen
Sallows is a child psychologist
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who brought this treatment program
to British Columbia from Wisconsin.
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…with smart questions? Yeah.
Can you tell me three animals?
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What are three animals?
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Two years ago, he assessed
Winston and got him started on
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an intensive treatment program based on Applied
Behavioral Analysis often referred to as ABA.
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Tell me another animal.
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The basic approach is a one to one intensive
teaching strategy where we look at the child,
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we figure out what doesn’t he know how to do
and then we teach it, just very directly.
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Tell me what is first?
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The helicopter is first.
Helicopter is first. Good.
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Applied Behavioral Analysis is an adult driven
highly structured approach to learning.
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[sil.]
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This home video was from one of
Winston’s first therapy sessions.
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At this point, he had words but he
didn’t always understand their meaning.
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Who’s last? Say who is last. Who is last.
Jane is (inaudible).
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Who’s last, say pooh. Pooh is last?
That’s right. Pooh is last. Who is last?
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Enough. Which one’s last?
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Pooh is last. Say pooh. Pooh is last. To teach
language, we need the child to imitate.
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Artistic children are famous for not
imitating. They don’t pay attention to people,
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their eye contact is poor with people. Uh… they don’t watch
what people do very much and they don’t imitate them,
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whereas non-artistic children learn a lot
just by watching what other people do.
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So, we need to teach a child as a
child to imitate. Who is first?
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Helicopter is first. Jennifer
Newland is the senior supervisor
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with Winston’s program. For
applied behavior analysis,
00:14:00.000 --> 00:14:04.999
we use something called discrete trial format which basically
has three components. We would give him an instruction.
00:14:05.000 --> 00:14:09.999
Winston, put the lego underneath the table.
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Then we would inspect the
response from Winston.
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And we would tell him
that he did very well.
00:14:20.000 --> 00:14:24.999
All right, good job, Winston.
Each time Winston is rewarded,
00:14:25.000 --> 00:14:29.999
it increases the likelihood he’ll
repeat that behavior correctly.
00:14:30.000 --> 00:14:34.999
This approach of using Applied Behavioral Analysis
to teach autistic children skills was pioneered
00:14:35.000 --> 00:14:39.999
in the 1960’s by Dr. Ivar Lovaas.
He conducted a study
00:14:40.000 --> 00:14:44.999
that looked at 38 autistic preschool
children, half of them received
00:14:45.000 --> 00:14:49.999
40 hours per week of intensive behavioral
intervention and the other half received
00:14:50.000 --> 00:14:54.999
only 5-10 hours per week. And in
‘87, he published his outcome study.
00:14:55.000 --> 00:14:59.999
He found that 9 of 19 experimental kids
are 47% reach what he called normalcy
00:15:00.000 --> 00:15:04.999
or best outcome, which
meant that their IQ’s
00:15:05.000 --> 00:15:09.999
increase to the average range, so they
could go to regular school with no help,
00:15:10.000 --> 00:15:14.999
they spoke fluently, they had friends etc.
Here’s what I want, can you put
00:15:15.000 --> 00:15:19.999
a couple of hockey players here, please? Hurry
up. Which hockey player? Doesn’t matter.
00:15:20.000 --> 00:15:24.999
[sil.]
00:15:25.000 --> 00:15:29.999
That’s a couple, good job. What’s the
opposite of fast? Slow. Excellent, job.
00:15:30.000 --> 00:15:34.999
Mike and Tamara were impressed by the Lovaas
research. They chose the early autism project
00:15:35.000 --> 00:15:39.999
as their consultant because it’s the only program
in Canada directly affiliated with Dr. Lovaas.
00:15:40.000 --> 00:15:44.999
Just like, you’re just having to have a
typical conversation and Winston makes
00:15:45.000 --> 00:15:49.999
a real statement to join in the conversation, but it has
to be related… Mike and Tamara created a therapy room
00:15:50.000 --> 00:15:54.999
in their home. And they hired
line therapist to work
00:15:55.000 --> 00:15:59.999
under the direction of their senior consultant.
Twice a month, Jennifer visits the Leger home
00:16:00.000 --> 00:16:04.999
to check Winston’s progress. And if
necessary, make changes to the program.
00:16:05.000 --> 00:16:09.999
The belief is that, umm… the brain can be
rewired for several years in childhood.
00:16:10.000 --> 00:16:14.999
And through systems of reinforcement
pushing to motivate the child,
00:16:15.000 --> 00:16:19.999
umm… it pushes the neurological functioning to continue to…
to rewire itself and, and achieve success, essentially.
00:16:20.000 --> 00:16:24.999
Winston, I need all of the players here
00:16:25.000 --> 00:16:29.999
except two, go.
00:16:30.000 --> 00:16:34.999
With Lovaas’s ABA, parent participation
in treatment is essential.
00:16:35.000 --> 00:16:39.999
[sil.]
00:16:40.000 --> 00:16:44.999
All right, that’s right, you left one and two. Good
job. Mike chose to temporarily set aside his career
00:16:45.000 --> 00:16:49.999
to take on the role as Winston’s lead
therapist. Our entire program has changed.
00:16:50.000 --> 00:16:54.999
So umm… I want new, new drills
00:16:55.000 --> 00:16:59.999
we are doing is instead of having one a less new conversation.
We’re going to have them work on joining in so…
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Winston’s program has recently
been ramped up to 40 hours a week.
00:17:05.000 --> 00:17:09.999
That means every weekday, three different
line therapists come to their home.
00:17:10.000 --> 00:17:14.999
Each does a two to three hour shift
up to nine hours a day in total.
00:17:15.000 --> 00:17:19.999
Okay. They run drills and keep data on
Winston’s correct and incorrect responses.
00:17:20.000 --> 00:17:24.999
Tracking Winston’s progress is a
key element of the Lovaas program.
00:17:25.000 --> 00:17:29.999
It determines when to move to the
next step. Sharks was the second one.
00:17:30.000 --> 00:17:34.999
In our house, when our kids are
home, there’s always someone here,
00:17:35.000 --> 00:17:39.999
there’s therapy going on until 9 ‘o clock
at night, or an activity going on,
00:17:40.000 --> 00:17:44.999
or someone coming in, or being debriefed for a meeting, or
this and that. I think one of the unfortunate methodologies
00:17:45.000 --> 00:17:49.999
about ABA is that it’s not much fun
00:17:50.000 --> 00:17:54.999
for the child. And, and, that somehow,
00:17:55.000 --> 00:17:59.999
it’s torturous to work that hard. Say
black staff when you are… Black Staff.
00:18:00.000 --> 00:18:04.999
Okay, ready. You can try and touch the ceiling. If I’m
doing 25-30 hours a week of therapy with the child,
00:18:05.000 --> 00:18:09.999
it better be fun. I’m going to
have a really unhappy camper
00:18:10.000 --> 00:18:14.999
and uh… lots of the ABA therapists are
very well trained to… to in terms of
00:18:15.000 --> 00:18:19.999
how to interact, they develop
strong bonds with the children,
00:18:20.000 --> 00:18:24.999
they have, they have fun
together, it’s very reinforcing.
00:18:25.000 --> 00:18:29.999
The early autism project provides the curriculum
and the consultation but Mike and Tamara
00:18:30.000 --> 00:18:34.999
are responsible for running the program
on a daily basis. They hire and manage
00:18:35.000 --> 00:18:39.999
the line therapist as well as a speech
therapist who Winston sees once a week.
00:18:40.000 --> 00:18:44.999
Our whole life is on here, so every morning when we…
we get up, we come down over the previous night
00:18:45.000 --> 00:18:49.999
and make a list on what’s happening and who’s
doing what shift when and where are our marks
00:18:50.000 --> 00:18:54.999
that we have to meet and if it’s not
on the calendar, it doesn’t get done.
00:18:55.000 --> 00:18:59.999
Tamara, who has also put her career aside
00:19:00.000 --> 00:19:04.999
looks after the paperwork keeping
track of expenses and the payroll
00:19:05.000 --> 00:19:09.999
and all other employer responsibilities.
It’s like running a small business.
00:19:10.000 --> 00:19:14.999
Win, do you want to come
down and play lego with me?
00:19:15.000 --> 00:19:19.999
Win, do you want to come
down and play lego with me?
00:19:20.000 --> 00:19:24.999
Listen. I… I… I’m playing, I’m
playing my game boy, right now.
00:19:25.000 --> 00:19:29.999
[music]
00:19:30.000 --> 00:19:34.999
Five, four, three, two, one and you
know what the gameboy is over,
00:19:35.000 --> 00:19:39.999
turn it off, now please, now, now, Winston. I don’t want
Taylor to have a turn. Okay. Nobody is having a turn, go down.
00:19:40.000 --> 00:19:44.999
Let’s go play legos. I don’t wanna play with
taylor. Look at me, it’s time to go and play,
00:19:45.000 --> 00:19:49.999
you have 20 minutes to go and play with your
brother. Do you understand what I’m telling you?
00:19:50.000 --> 00:19:54.999
Yeah, I don’t want to play with my brother. Well,
we have to schedule, we’ll schedule down time
00:19:55.000 --> 00:19:59.999
and it’s actually scheduled as sibling peer
play or sibling play where it’s managed
00:20:00.000 --> 00:20:04.999
and there’s, there’s items that they’re gonna cover and work on it.
So it’s targeted and everything is purposeful …something to play.
00:20:05.000 --> 00:20:09.999
What do you wanna play? What do you? I wanna
play lego. I don’t wanna play it with Taylor.
00:20:10.000 --> 00:20:14.999
I wanna play lego. Tamara uses an
argument between Winston and Taylor
00:20:15.000 --> 00:20:19.999
as a teaching moment. Not with you.
Look at your brother’s face,
00:20:20.000 --> 00:20:24.999
is that nice? No. How do you
think you made him feel?
00:20:25.000 --> 00:20:29.999
Sad. What should you do? We’re
parenting in a different style,
00:20:30.000 --> 00:20:34.999
we, your whole home and your lifestyle
is ABA. You live, breathe, schedule,
00:20:35.000 --> 00:20:39.999
everything is ABA. Here we go, ready.
00:20:40.000 --> 00:20:44.999
One hand, oh, ah, I think, it was a tie.
00:20:45.000 --> 00:20:49.999
I beat you. You did, okay. Basically, it’s
every waking hour is a learning opportunity
00:20:50.000 --> 00:20:54.999
for him on some level, so I mean, 24/7 or
at least during his waking hours he’s,
00:20:55.000 --> 00:20:59.999
there’s something he’s working on.
I see something,
00:21:00.000 --> 00:21:04.999
I see something that
rhymes with band. Hand.
00:21:05.000 --> 00:21:09.999
Hand, oh, good one. I thought
of something else. Thing.
00:21:10.000 --> 00:21:14.999
Bing, string.
00:21:15.000 --> 00:21:19.999
Come on over here, I’m gonna try and
go on the… on the monkey bars, okay?
00:21:20.000 --> 00:21:24.999
[sil.]
00:21:25.000 --> 00:21:29.999
To cross there, I have to, I have
to use my hang glider to go,
00:21:30.000 --> 00:21:34.999
to go across there. You need what? My hang
glider thing. Okay, but who are you talking to?
00:21:35.000 --> 00:21:39.999
Dad, I need, I think I need,
I think, my hang glider,
00:21:40.000 --> 00:21:44.999
hang glider to go over there, across there.
Wait a second, your body was…
00:21:45.000 --> 00:21:49.999
wasn’t talking to me. I heard your voice,
you used my name, here, that’s okay.
00:21:50.000 --> 00:21:54.999
Night Crawler. Oh, nice eye contact,
good job. I mean, the ultimate goal of
00:21:55.000 --> 00:21:59.999
ABA therapy is to build those independent
living skills and get in there
00:22:00.000 --> 00:22:04.999
and hit it with, like, the SWAT team
approach early in life. And then remove it,
00:22:05.000 --> 00:22:09.999
you know, you go in with these all team and
then you pull back and… and eventually,
00:22:10.000 --> 00:22:14.999
he’s able to do all these independent skills on his own. But that
being said, as a parent… And that’s the goal. The goal of ABA
00:22:15.000 --> 00:22:19.999
is to not be in his life eventually,
and to have him function
00:22:20.000 --> 00:22:24.999
and be a normal member of society. Right now, why don’t you
playing here or play over on the playground. I wanna play over
00:22:25.000 --> 00:22:29.999
on the playground. Ask, well, ask a friend to play
with you. Do you want to play on the playground.
00:22:30.000 --> 00:22:34.999
Okay. After a morning at preschool, Winston
hangs out with his classmate Ellis.
00:22:35.000 --> 00:22:39.999
Making friends is not something
that’s come easily to Winston.
00:22:40.000 --> 00:22:44.999
Through Mike’s constant coaching from the
sidelines, he’s learning social skills
00:22:45.000 --> 00:22:49.999
that are necessary for him to fit in
with the other kids. You be the troll.
00:22:50.000 --> 00:22:54.999
What they turn outsider, an outside parent
00:22:55.000 --> 00:22:59.999
I look like, a really,
overprotective kind of crazy parent.
00:23:00.000 --> 00:23:04.999
Oh yeah, you know… Over involved.
…like calm down, what’s his problem,
00:23:05.000 --> 00:23:09.999
right, the kids Okay, that parent’s
nuts, right. But you have to.
00:23:10.000 --> 00:23:14.999
Why don’t you ask Ellis? You haven’t said
anything. right here, let us (inaudible).
00:23:15.000 --> 00:23:19.999
We’re getting to a place where he looks,
he is starting to look pretty good.
00:23:20.000 --> 00:23:24.999
Okay, when would you gonna say?
Good bye. Bye.
00:23:25.000 --> 00:23:29.999
He is popular, he gets invited to birthday
parties where there’s only eight kids invited
00:23:30.000 --> 00:23:34.999
and he is one of the eight
chosen, not out of pity but,
00:23:35.000 --> 00:23:39.999
but he’s won a place at the birthday table.
00:23:40.000 --> 00:23:44.999
Winston’s I.Q. has now risen to the
average range. And I just saw his
00:23:45.000 --> 00:23:49.999
uh… report from a speech therapist
and on the speech test he’s average.
00:23:50.000 --> 00:23:54.999
Umm… He’s, he’s really getting there. He’s uh…
he’s definitely what we call best outcome child.
00:23:55.000 --> 00:23:59.999
[sil.]
00:24:00.000 --> 00:24:04.999
Great jacket. For Tamara and Mike, this
reinforces that the program they’ve chosen is
00:24:05.000 --> 00:24:09.999
the right one for Winston. And that their
investment of time and money is worth it.
00:24:10.000 --> 00:24:14.999
[sil.]
00:24:15.000 --> 00:24:19.999
Come sit down. 40 hours a week of this
intensive behavioral therapy costs
00:24:20.000 --> 00:24:24.999
about $60,000 a year. The funding
offered by the provincial government
00:24:25.000 --> 00:24:29.999
covers only a small portion of what they say
they need. We’re just barely getting by.
00:24:30.000 --> 00:24:34.999
And, I mean, you know, we have stuff but we
are, you know, it’s a very real possibility,
00:24:35.000 --> 00:24:39.999
we may have to sell our house.
00:24:40.000 --> 00:24:44.999
We started down the road and we’ve seen
such a tremendous progress that we are now
00:24:45.000 --> 00:24:49.999
sensing a way out for our son,
eventually, a future that is,
00:24:50.000 --> 00:24:54.999
that is full of possibility and
full of potential. And as a parent,
00:24:55.000 --> 00:24:59.999
it’s, you are put in a dilemma that’s much
like, like, selfish choice in the sense
00:25:00.000 --> 00:25:04.999
that you’re not going to
give up your child’s future,
00:25:05.000 --> 00:25:09.999
how could you? So, everything that you see
is for sale for the future of my child.
00:25:10.000 --> 00:25:14.999
The decision about the treatment approach
00:25:15.000 --> 00:25:19.999
to take for any child with autism
is umm… a very complicated one.
00:25:20.000 --> 00:25:24.999
The first thing that’s
important to understand is
00:25:25.000 --> 00:25:29.999
there… there is no evidence
based approach to determining
00:25:30.000 --> 00:25:34.999
what the best treatment
is for a given child.
00:25:35.000 --> 00:25:39.999
Dr. Miranda thinks of the treatment options as being on a
continuum anchored by the two most common therapy models.
00:25:40.000 --> 00:25:44.999
On one end are traditional
behavioral approaches
00:25:45.000 --> 00:25:49.999
adult directed, highly structured sessions
where the emphasis is on building skills.
00:25:50.000 --> 00:25:54.999
That’s the approach Mike and
Tamara have chosen for Winston.
00:25:55.000 --> 00:25:59.999
On the other end is a social
developmental approach.
00:26:00.000 --> 00:26:04.999
The emphasis is on building relationships and
interaction and the child directs the activities.
00:26:05.000 --> 00:26:09.999
It’s less structured than the behavioral
approach. And then there’s a whole range of
00:26:10.000 --> 00:26:14.999
treatment options that
fall along the continuum
00:26:15.000 --> 00:26:19.999
and I think, that’s, maybe a
helpful way for families to think
00:26:20.000 --> 00:26:24.999
about treatment options, is where on
this continuum from very structured,
00:26:25.000 --> 00:26:29.999
very skill based to more play
based relationship focus.
00:26:30.000 --> 00:26:34.999
Where they are, do I believe my
child should receive service
00:26:35.000 --> 00:26:40.000
and… and do I feel comfortable
having my child receive service?
00:26:45.000 --> 00:26:49.999
Oh, slide, mummy’s turn.
00:26:50.000 --> 00:26:54.999
Cyndi Gerlach is still getting used
to the idea that her son Blake
00:26:55.000 --> 00:26:59.999
is on the autism spectrum.
I think in my heart,
00:27:00.000 --> 00:27:04.999
I knew that he was on the spectrum
but I also didn’t want him to be.
00:27:05.000 --> 00:27:09.999
Cyndi and her husband Walter know
00:27:10.000 --> 00:27:14.999
all about autism. Blake’s older brother, Colin
was diagnosed with the disorder, two years ago.
00:27:15.000 --> 00:27:19.999
[sil.]
00:27:20.000 --> 00:27:24.999
This is me walking, I’m 11 months old.
This is Colin at 11 months.
00:27:25.000 --> 00:27:29.999
He was a typical outgoing
toddler but at about 18 months,
00:27:30.000 --> 00:27:34.999
his playful personality started
to disappear. It was, like,
00:27:35.000 --> 00:27:39.999
he had just vacated, I can remember he was
standing right here and all of a sudden,
00:27:40.000 --> 00:27:44.999
he just gone, like, the eyes were
blank and I would go Colin, Colin
00:27:45.000 --> 00:27:49.999
and then he’d come back. Colin.
This blanking out
00:27:50.000 --> 00:27:54.999
combined with the fact that Colin had no speech
led Cyndi to take him to a pediatrician.
00:27:55.000 --> 00:27:59.999
Colin was diagnosed with autism. And to
help them decide on a treatment approach,
00:28:00.000 --> 00:28:04.999
the pediatrician recommended Cyndi
and Walter read three books.
00:28:05.000 --> 00:28:09.999
It gave me an opportunity to read about
the different types of interventions,
00:28:10.000 --> 00:28:14.999
at least, the three that she recommended.
00:28:15.000 --> 00:28:19.999
I was being told to investigate that
there are viable options out there
00:28:20.000 --> 00:28:24.999
to greet and find out what fit with our family,
and that was the most important thing because
00:28:25.000 --> 00:28:29.999
it’s our family that is going
to walk this walk with Colin.
00:28:30.000 --> 00:28:34.999
And if it doesn’t fit our family then
it wasn’t, it would work. For a while,
00:28:35.000 --> 00:28:39.999
the Gerlach’s tried Applied Behavioral Analysis on their own
but they quickly decided it wasn’t going to work for Colin.
00:28:40.000 --> 00:28:44.999
We know our child best.
00:28:45.000 --> 00:28:49.999
Uh… Walter and I didn’t like the
fact that it was adult driven.
00:28:50.000 --> 00:28:54.999
If the child didn’t comply,
he was made to comply.
00:28:55.000 --> 00:28:59.999
We see it as needing to be uh…
therapy that is built around Colin,
00:29:00.000 --> 00:29:04.999
okay, not, not one where we take Colin
00:29:05.000 --> 00:29:09.999
and we should horn him into the box.
00:29:10.000 --> 00:29:14.999
Was there nothing in there?
00:29:15.000 --> 00:29:19.999
And so, umm… we decided that we were going to
do the developmental approach, because for us
00:29:20.000 --> 00:29:24.999
it was more natural, it
was accepting our son
00:29:25.000 --> 00:29:29.999
for who he is and not the
fact that he is autistic.
00:29:30.000 --> 00:29:34.999
First, he’s a little boy, first.
00:29:35.000 --> 00:29:39.999
The developmental approach that Cyndi and Walter selected
is at the opposite end of the treatment continuum
00:29:40.000 --> 00:29:44.999
from Applied Behavioral Analysis.
00:29:45.000 --> 00:29:49.999
They had to go south of the border to Seattle to find a consultant
who specializes in this method of treating children with autism.
00:29:50.000 --> 00:29:54.999
Okay, come on in. Hey Colin.
00:29:55.000 --> 00:29:59.999
Rosemary White is an occupational therapist
who uses an approach called DIR,
00:30:00.000 --> 00:30:04.999
Developmental Individual Difference
Relationship Based Intervention.
00:30:05.000 --> 00:30:09.999
Yeah. We’re going to open,
mom, come, open. Pull.
00:30:10.000 --> 00:30:14.999
DIR is much more established
in the United States.
00:30:15.000 --> 00:30:19.999
It’s just starting to gain popularity
in Canada. DIR is a triggered approach
00:30:20.000 --> 00:30:24.999
in which, I think, the most important
component is developing a relationship
00:30:25.000 --> 00:30:29.999
with the child which provides a foundation
for them, to be able to interact with people
00:30:30.000 --> 00:30:34.999
throughout their lives.
00:30:35.000 --> 00:30:39.999
Oh, oh, oh, so I’m really looking for him to really connect that oh,
you’re the one who is rocking. I can play. Yeah, yeah, yeah, yeah.
00:30:40.000 --> 00:30:44.999
Oh, oh. Now that’s too much so he’s
going back to regulate himself.
00:30:45.000 --> 00:30:49.999
This is only Colin’s second visit to
Rosemary. The last was six months ago.
00:30:50.000 --> 00:30:54.999
Cyndi, what sort of umm… toys does he
likely to play with at the moment.
00:30:55.000 --> 00:30:59.999
Oh, things that require action
or movement from him. Okay.
00:31:00.000 --> 00:31:04.999
Hammering, he likes to hammer. Cyndi is
still learning how to use the DIR approach.
00:31:05.000 --> 00:31:09.999
In this model, the adult enters the child’s
activities and follows their lead.
00:31:10.000 --> 00:31:14.999
…him to sort of anticipate
you so his emotional juices
00:31:15.000 --> 00:31:19.999
are really getting… The theory behind DIR
is that artistic children have difficulty
00:31:20.000 --> 00:31:24.999
connecting with people because they’ve missed
key stages in their emotional development.
00:31:25.000 --> 00:31:29.999
Up.
00:31:30.000 --> 00:31:34.999
Boom. As infants, many
don’t learn naturally
00:31:35.000 --> 00:31:39.999
to communicate their needs through
gestures or words and as they get older,
00:31:40.000 --> 00:31:44.999
they can’t engage others in
imaginative play or make fully.
00:31:45.000 --> 00:31:49.999
In DIR, it’s believed that once you figure out
where the child is on the developmental ladder,
00:31:50.000 --> 00:31:54.999
it’s possible to go back
and fill in the gaps.
00:31:55.000 --> 00:31:59.999
I can see a little smile on his face.
00:32:00.000 --> 00:32:04.999
And you can see, this is
really emulating play
00:32:05.000 --> 00:32:09.999
that’s probably around 12, 9-12
months of life for me, like,
00:32:10.000 --> 00:32:14.999
when you’re changing a diaper. Rosemary believes that
even though Colin is five years old chronologically,
00:32:15.000 --> 00:32:19.999
he’s more like an infant in his ability to relate
to others. The only way to really connect with him
00:32:20.000 --> 00:32:24.999
is by interacting with him at
his actual developmental level.
00:32:25.000 --> 00:32:29.999
You see nifty shows and he
anticipate what mom’s gonna do.
00:32:30.000 --> 00:32:34.999
It’s believed that these emotional interactions
will motivate him to develop socially
00:32:35.000 --> 00:32:39.999
and master new skills, a very different
theory from Applied Behavioral Analysis.
00:32:40.000 --> 00:32:44.999
You want that foot? A behavioral
approach is really very skilled driven,
00:32:45.000 --> 00:32:49.999
you pick or you identify a particular
skill that a child does not have
00:32:50.000 --> 00:32:54.999
and then you work on all the increment
of that skill in a very rote way.
00:32:55.000 --> 00:32:59.999
The biggest challenge for
these children may not be
00:33:00.000 --> 00:33:04.999
the acquisition of the skills but the
social integration in the classroom sitting
00:33:05.000 --> 00:33:09.999
and being able to interact with their peers.
And this is a significant difference between
00:33:10.000 --> 00:33:14.999
the ABA approach and the DIR approach.
DIR is looking at
00:33:15.000 --> 00:33:19.999
the social component. He’s gonna drop. Mom.
00:33:20.000 --> 00:33:24.999
What I wanted to do is create
00:33:25.000 --> 00:33:29.999
a play environment that gives what he is, gives
him what he’s seeking out but that we can make it
00:33:30.000 --> 00:33:34.999
a social interaction between the three
of us. In DIR, parents and caregivers
00:33:35.000 --> 00:33:39.999
spend several periods in each day focusing
intensively on relating to the child.
00:33:40.000 --> 00:33:44.999
These 8 to 10 minute sessions
are called floor time.
00:33:45.000 --> 00:33:49.999
The key is to entice the
child into making contact.
00:33:50.000 --> 00:33:54.999
Ready… two,
00:33:55.000 --> 00:33:59.999
two… mom.
00:34:00.000 --> 00:34:04.999
And the analogy I always talk about with,
00:34:05.000 --> 00:34:09.999
this is, like, you’re a fly fisher woman on the
side of the stream and you’re trying to decide
00:34:10.000 --> 00:34:14.999
what is the lure that really attracts
him to come into the interaction.
00:34:15.000 --> 00:34:19.999
Yeah, ready, set. The circle is completed
00:34:20.000 --> 00:34:24.999
when the child responds. Rolling a ball
back with force. Now what I’m looking at
00:34:25.000 --> 00:34:29.999
is not so much that he is, I mean, he’s staying
on this but he’s referencing back and forth,
00:34:30.000 --> 00:34:34.999
oh, you are in this with me. The
idea is to engage the child
00:34:35.000 --> 00:34:39.999
for longer and longer periods of time.
These interactions become building blocks
00:34:40.000 --> 00:34:44.999
that help the child develop emotionally.
Relationship based approaches
00:34:45.000 --> 00:34:49.999
have much last research behind them.
00:34:50.000 --> 00:34:54.999
One of the criticisms that some people would
have about those approaches is, well,
00:34:55.000 --> 00:34:59.999
you know, all you do is play all day with the kid, when he
teaching them skills? In a good relationship based approach
00:35:00.000 --> 00:35:04.999
umm… there… there should be skill building going
on. It’s just getting to the skill building
00:35:05.000 --> 00:35:09.999
through the back door rather than through
the front door which is what ABA does.
00:35:10.000 --> 00:35:14.999
Ah, leave me alone mom. What for a
parent with a child with autism
00:35:15.000 --> 00:35:19.999
is struggling to get them connected with
them, to get, to, and to be able to
00:35:20.000 --> 00:35:24.999
sustain that connection, it’s not that
your child doesn’t want to look at you
00:35:25.000 --> 00:35:29.999
it’s that the world is often at a physical
sensory level so overwhelming for them
00:35:30.000 --> 00:35:34.999
that it’s hard to able to pull
those skills in together.
00:35:35.000 --> 00:35:39.999
Colin can stay connected
00:35:40.000 --> 00:35:44.999
for only a short period of time before he’s over
stimulated, then he needs time to calm down.
00:35:45.000 --> 00:35:49.999
This tendency to be over
response of to activity
00:35:50.000 --> 00:35:54.999
has to be taken into account
when playing with him.
00:35:55.000 --> 00:35:59.999
Too much stimulation means he doesn’t interact
and no interaction means he won’t learn.
00:36:00.000 --> 00:36:04.999
The long term hope of a
incorporating a DIR approach
00:36:05.000 --> 00:36:09.999
into the treatment of your child within,
with autism, I think, is to really enrich
00:36:10.000 --> 00:36:14.999
the quality of life for both
the child and for the family.
00:36:15.000 --> 00:36:19.999
Very much. Back in Vancouver, Cindy
takes on the responsibility of
00:36:20.000 --> 00:36:24.999
coordinating Colin’s intervention. It’s a
challenge being so far away from her consultant
00:36:25.000 --> 00:36:29.999
so she relies heavily on this book
that lays out the DIR approach,
00:36:30.000 --> 00:36:34.999
it’s her Bible.
00:36:35.000 --> 00:36:39.999
[sil.]
00:36:40.000 --> 00:36:44.999
Walter and Cindy integrate floor time into
their everyday interactions with Colin.
00:36:45.000 --> 00:36:49.999
[sil.]
00:36:50.000 --> 00:36:54.999
Yeah. you got it.
00:36:55.000 --> 00:36:59.999
Cindy also hired an occupational
therapist Rebecca Raynor.
00:37:00.000 --> 00:37:04.999
She has a similar philosophical
approach to treating autism.
00:37:05.000 --> 00:37:09.999
Every weekday afternoon, Rebecca takes Colin out into the
community to teach him some of the basic skills he’ll need
00:37:10.000 --> 00:37:14.999
as he gets ready to start school.
It’s important to Cindy and Walter
00:37:15.000 --> 00:37:19.999
that these teaching sessions are kept separate
from their home life. Bye, bye, Colin.
00:37:20.000 --> 00:37:24.999
Our home is our home, it’s Colin’s safe
place. This is where Colin gets to be Colin.
00:37:25.000 --> 00:37:29.999
This is where our family is our family
and that is so important to us.
00:37:30.000 --> 00:37:34.999
It’s what we strongly believe in.
I don’t want
00:37:35.000 --> 00:37:39.999
people traipsing in and out of my house.
I want my kids to have farther.
00:37:40.000 --> 00:37:44.999
You want the book?
00:37:45.000 --> 00:37:49.999
Yes, please, I want it, good asking.
Unlike floor time,
00:37:50.000 --> 00:37:54.999
these sessions are semi structured.
00:37:55.000 --> 00:37:59.999
Ear, orange, tiger.
00:38:00.000 --> 00:38:04.999
We plan certain amount of
activities where Colin leads using,
00:38:05.000 --> 00:38:09.999
you know, interest that he has.
Things that he’s motivated to do.
00:38:10.000 --> 00:38:14.999
You can see the hand. We can start. Ready.
00:38:15.000 --> 00:38:19.999
Colin is just starting to use a computer
00:38:20.000 --> 00:38:24.999
and Rebecca thinks he’s ready to handle the challenge of
learning this brand new game. A fire engine, a ladder.
00:38:25.000 --> 00:38:29.999
In keeping with the DIR approach,
00:38:30.000 --> 00:38:34.999
she continues to connect with Colin
as he works his way through the task.
00:38:35.000 --> 00:38:39.999
This is going up.
00:38:40.000 --> 00:38:44.999
Basically, I’m at the point with Colin
where I can pretty much attempt anything
00:38:45.000 --> 00:38:49.999
really challenging and
support him through it.
00:38:50.000 --> 00:38:54.999
And he’s probably more able
to try things which are
00:38:55.000 --> 00:38:59.999
perhaps new, different.
00:39:00.000 --> 00:39:04.999
We’ll have more computer next
week but we’re all done.
00:39:05.000 --> 00:39:09.999
Because he doesn’t speak, Colin is
learning to let people know what he wants
00:39:10.000 --> 00:39:14.999
by using simple sign language and a system
called Picture Exchange Communication.
00:39:15.000 --> 00:39:19.999
Good job. When the provincial government
00:39:20.000 --> 00:39:24.999
finally gave funding for our children.
00:39:25.000 --> 00:39:29.999
In my opinion, they
downloaded it on to families.
00:39:30.000 --> 00:39:34.999
Umm… And so now all of a sudden,
here I am responsible for the money
00:39:35.000 --> 00:39:39.999
that’s coming to us. I have to
hire people, I have to train them,
00:39:40.000 --> 00:39:44.999
I have to do payroll which I’ve never done
in my life, you know, I’m an employer,
00:39:45.000 --> 00:39:49.999
I’m an employer, I wear another hat.
00:39:50.000 --> 00:39:54.999
So it puts me in, in a role
that I really don’t want.
00:39:55.000 --> 00:39:59.999
Yeah, hey,
00:40:00.000 --> 00:40:04.999
yeah that was a good night tonight. Did
you? Went down to the park with Matthew,
00:40:05.000 --> 00:40:09.999
it’s pretty good. Most of the tracking
of Colin’s progress is done informally.
00:40:10.000 --> 00:40:14.999
Rebecca and Cindy both keep notes
to record Colin’s milestones
00:40:15.000 --> 00:40:19.999
and for Cindy that’s enough.
I don’t keep track of
00:40:20.000 --> 00:40:24.999
he’s improved by 13% because
he’s not a product,
00:40:25.000 --> 00:40:29.999
he’s a little boy.
00:40:30.000 --> 00:40:34.999
And I, I monitor his
improvement by what I see.
00:40:35.000 --> 00:40:39.999
Look hard, you snapped me today.
00:40:40.000 --> 00:40:44.999
I look at what Colin was like
00:40:45.000 --> 00:40:49.999
when he was three,
00:40:50.000 --> 00:40:54.999
not interacting with anybody.
00:40:55.000 --> 00:40:59.999
Here’s a little boy that didn’t know
how to play with his younger brother
00:41:00.000 --> 00:41:04.999
and the other day I see him for the very first
time take a toy from his younger brother
00:41:05.000 --> 00:41:09.999
and run away with it. Would
that have ever happened
00:41:10.000 --> 00:41:14.999
without the intervention? I don’t think so.
You okay? We did it.
00:41:15.000 --> 00:41:19.999
I’m not in a big hurry to cure my son.
00:41:20.000 --> 00:41:24.999
I don’t think of it as a disability. In
my opinion, autism is a different way of
00:41:25.000 --> 00:41:29.999
processing information, it is a
different way of analyzing the world,
00:41:30.000 --> 00:41:34.999
it is a different way existing, and
there’s nothing wrong with that.
00:41:35.000 --> 00:41:40.000
[music]
00:41:45.000 --> 00:41:49.999
Alex and Tyler are five
year old, identical twins.
00:41:50.000 --> 00:41:54.999
They live in Colona with their
mum and new stepdad, Trevor.
00:41:55.000 --> 00:41:59.999
When the boys were young, I was kind
of in denial and I assumed that it was
00:42:00.000 --> 00:42:04.999
because they were twins. And that’s
why they were not developing
00:42:05.000 --> 00:42:09.999
normally like a normal child would be.
00:42:10.000 --> 00:42:14.999
Alex, Alexander, no, okay.
00:42:15.000 --> 00:42:19.999
I couldn’t have much furniture in my living
room because it would be upside down.
00:42:20.000 --> 00:42:24.999
Even in the bedroom, umm… the
curtains were off the walls,
00:42:25.000 --> 00:42:29.999
the… furniture would be tipped over, I
knew those were not normal behaviors.
00:42:30.000 --> 00:42:34.999
And the screaming, the screaming was constant.
Let’s go see mommy, let’s go see mommy.
00:42:35.000 --> 00:42:39.999
Common, here’s mom, here’s mom.
00:42:40.000 --> 00:42:44.999
[sil.]
00:42:45.000 --> 00:42:49.999
I was pretty sure the kids were autistic
from the very first time when I met them.
00:42:50.000 --> 00:42:54.999
And I did mention that the Daynna, that I think we should
go get them tested because I… I believe they’re autistic
00:42:55.000 --> 00:42:59.999
but as she said, I think, she was in denial
on that and just didn’t want to admit that…
00:43:00.000 --> 00:43:04.999
that they might not be the perfect
child and… and the normal
00:43:05.000 --> 00:43:09.999
uh… developing child that you wanted. But
Daynna was forced to accept the truth
00:43:10.000 --> 00:43:14.999
when she took Tyler to the doctor with
an infection. And he was hysterical,
00:43:15.000 --> 00:43:19.999
he not let the doctor touch him.
The doctor said,
00:43:20.000 --> 00:43:24.999
\"Is he autistic?\" And I
said, \"No, he’s not.\"
00:43:25.000 --> 00:43:29.999
We left the appointment, I was quite upset.
I decided after
00:43:30.000 --> 00:43:34.999
we got home, I need to put
my fears aside of autism
00:43:35.000 --> 00:43:39.999
and make the necessary arrangements
with the Child Development Center
00:43:40.000 --> 00:43:44.999
to get a diagnosis. Help
me for looking, help me.
00:43:45.000 --> 00:43:49.999
The child development
center in Colona is home to
00:43:50.000 --> 00:43:54.999
the Thompson Okanagan autism project. One of three
programs set up by the provincial government
00:43:55.000 --> 00:43:59.999
to deliver early intensive behavioral
intervention to children with autism.
00:44:00.000 --> 00:44:04.999
In addition to Colona, there
are two other programs
00:44:05.000 --> 00:44:09.999
in Delta and Victoria.
00:44:10.000 --> 00:44:14.999
Families like the Alexander’s receive all of
the services they need through the center.
00:44:15.000 --> 00:44:19.999
These services are paid for directly by the
government. That means the onus is not on the parents
00:44:20.000 --> 00:44:24.999
to hire staff and to do bookkeeping.
But this model of funding
00:44:25.000 --> 00:44:29.999
is available to only 75
children in the province.
00:44:30.000 --> 00:44:34.999
Parents who have autistic children can
go in the facilities are, are there
00:44:35.000 --> 00:44:39.999
and, and it’s all arranged. I think
the program is just wonderful.
00:44:40.000 --> 00:44:44.999
And for us what that means is
that for three hours each day,
00:44:45.000 --> 00:44:49.999
a behavioral system comes and works one on one
with each of the children in different rooms
00:44:50.000 --> 00:44:54.999
to do the behavior modification. Hey,
Tye, it’s time to look at the books.
00:44:55.000 --> 00:44:59.999
Tyler works six days a week with his
therapist in the upstairs playroom.
00:45:00.000 --> 00:45:04.999
Arthur. Arthur, good talking.
00:45:05.000 --> 00:45:09.999
When Tyler started the program,
he didn’t make any sounds at all,
00:45:10.000 --> 00:45:14.999
no babbling, not even humming and it was
impossible to get him to sit still.
00:45:15.000 --> 00:45:19.999
Downstairs, Alex, is working
on more advanced skills.
00:45:20.000 --> 00:45:24.999
Show me 11, 11. Good for you, Alex.
00:45:25.000 --> 00:45:29.999
Look at me. When Alex started the
program, he was able to use single words
00:45:30.000 --> 00:45:34.999
but he couldn’t speak in complete sentences.
He also had difficulty sitting still
00:45:35.000 --> 00:45:39.999
and taking direction. Got looking.
00:45:40.000 --> 00:45:44.999
[sil.]
00:45:45.000 --> 00:45:49.999
Dr. Gerald Kysela is the behavioral consultant
who designed Alex and Tyler’s program.
00:45:50.000 --> 00:45:54.999
He doesn’t consider autism a
disease that needs to be cured.
00:45:55.000 --> 00:45:59.999
I don’t talk about autism,
00:46:00.000 --> 00:46:04.999
I don’t talk about something that we don’t
understand, causing your child’s behavior.
00:46:05.000 --> 00:46:09.999
I talk about their child’s strengths and
needs, behaviorally, developmentally.
00:46:10.000 --> 00:46:14.999
I obviously see their child exhibiting some
characteristics that people call autistic characteristics
00:46:15.000 --> 00:46:19.999
but that’s not all they do.
They always do other things,
00:46:20.000 --> 00:46:24.999
exhibit other characteristics strengths,
assets, they bring assets to the family.
00:46:25.000 --> 00:46:29.999
Tye, touch dog. Dog.
00:46:30.000 --> 00:46:34.999
We made a goal. Nice sitting Tyler.
Dr. Kysega’s program
00:46:35.000 --> 00:46:39.999
draws on teaching strategies from both the
developmental and the behavioral model.
00:46:40.000 --> 00:46:44.999
Great. It’s time to play the block game.
00:46:45.000 --> 00:46:49.999
For Tyler and Alex, these two approaches
are combined in a regular daily routine.
00:46:50.000 --> 00:46:54.999
We included Lovaas style,
uh… this pre trial teaching
00:46:55.000 --> 00:46:59.999
that some people power ABA, or
Applied Behavior Analysis methods
00:47:00.000 --> 00:47:04.999
as… as one of the cornerstones of our intervention
program. Because the literature is shown
00:47:05.000 --> 00:47:09.999
as effective personally in my work with children over
the last 30 years, I found it to be very effective.
00:47:10.000 --> 00:47:14.999
Let’s count the bugs.
One, two, three, four.
00:47:15.000 --> 00:47:19.999
Now, have a 20-30 minute teaching session
and then they have a short break
00:47:20.000 --> 00:47:24.999
that we call play time for 10-12 minutes, 15 minutes
and then they have another teaching session
00:47:25.000 --> 00:47:29.999
20-30 minutes, another play time.
Time for play.
00:47:30.000 --> 00:47:34.999
Little time for play time, that’s right,
good words, Alex. Let’s go, play.
00:47:35.000 --> 00:47:39.999
Little time for play time, I’m excited.
Okay, let’s go outside.
00:47:40.000 --> 00:47:44.999
I want a double bounce, please.
00:47:45.000 --> 00:47:49.999
I want more double bounce, please.
I want more double bounce, please.
00:47:50.000 --> 00:47:54.999
Wow, good acting. During the play
time, we don’t just walk away
00:47:55.000 --> 00:47:59.999
and let the child engage
in inappropriate behavior.
00:48:00.000 --> 00:48:04.999
Good jumping. January. What do you want.
00:48:05.000 --> 00:48:09.999
Down, January. Go down please, January.
Go down please, January.
00:48:10.000 --> 00:48:14.999
The worker is supposed to
interact with the child
00:48:15.000 --> 00:48:19.999
following their lead, engaging in play, like, you
might see in the floor time approaches, Greenspan,
00:48:20.000 --> 00:48:24.999
following their lead using natural
teaching strategies, building play skills,
00:48:25.000 --> 00:48:29.999
building tolerance for
engagement, uh… and so on.
00:48:30.000 --> 00:48:34.999
Few more minutes, then trampling all done.
By moving from teaching, to play time,
00:48:35.000 --> 00:48:39.999
and back, Alex is learning
how to tolerate transitions,
00:48:40.000 --> 00:48:44.999
something that can be very difficult for a child on the
autism spectrum. I just need to know not that it happened
00:48:45.000 --> 00:48:49.999
but what happened before and what happened after.
It was the consequence of what was the behavior
00:48:50.000 --> 00:48:54.999
and the duration and stuff like that. Twice a month, Alex
and Tyler’s therapy team meets at the Alexander home.
00:48:55.000 --> 00:48:59.999
In addition to the behavioral assistance,
the Thompson Okanagan autism project
00:49:00.000 --> 00:49:04.999
provides an occupational therapist, behavioral
coordinator, and a speech and language pathologist.
00:49:05.000 --> 00:49:09.999
And that’s why we need to keep
00:49:10.000 --> 00:49:14.999
modeling language over and over
in this setting and that setting,
00:49:15.000 --> 00:49:19.999
with this person and that person. That meeting
is the kind of cornerstone of accountability.
00:49:20.000 --> 00:49:24.999
The way we make sure the
team is consistent,
00:49:25.000 --> 00:49:29.999
everybody’s doing things the same way. I would like him to
work on what it’s because I’m finding that would be useful.
00:49:30.000 --> 00:49:34.999
We also keep parents in the driver’s seat, so they
approve all the decisions that are made by the team.
00:49:35.000 --> 00:49:39.999
We talk about the progress and
just talk about as a group,
00:49:40.000 --> 00:49:44.999
what’s happened this weeks,
and they also wanted to know
00:49:45.000 --> 00:49:49.999
what issues I have to
deal with as a parent.
00:49:50.000 --> 00:49:54.999
No, Tyler, you can’t go outside.
00:49:55.000 --> 00:49:59.999
No, you are not going outside, right now, no. No,
Tyler, we are staying in the house, no, no, come on.
00:50:00.000 --> 00:50:04.999
Trevor and Daynna have learned new strategies
for handling situations like this.
00:50:05.000 --> 00:50:09.999
They’ve been taught to parent in a way that’s
consistent with Alex and Tyler’s therapy.
00:50:10.000 --> 00:50:14.999
I think, you have a balloon, right here.
I think, I have balloon, look.
00:50:15.000 --> 00:50:19.999
But neither of them is expected to take
part in the daily therapy sessions.
00:50:20.000 --> 00:50:24.999
We don’t want parents to become
teachers of their child,
00:50:25.000 --> 00:50:29.999
we want them to stay being parents.
Not therapists or interventionist.
00:50:30.000 --> 00:50:34.999
Why? Because they are the child’s parent,
00:50:35.000 --> 00:50:39.999
they’re not the child’s therapist
or interventionist, simple.
00:50:40.000 --> 00:50:44.999
[sil.]
00:50:45.000 --> 00:50:49.999
Both Daynna and Trevor work
full time outside of the home.
00:50:50.000 --> 00:50:54.999
Bye, bye. Bye, Alex. Bye. Three months
ago, Alex and Tyler started preschool.
00:50:55.000 --> 00:50:59.999
Wow. Of course, it was
traumatic for us because
00:51:00.000 --> 00:51:04.999
uh… they really, the world wasn’t
ready for Alex and Tyler yet
00:51:05.000 --> 00:51:09.999
and now Tyler and Alex weren’t ready for the world yet
we thought. And but this program has been so successful
00:51:10.000 --> 00:51:14.999
with the boys that they said, \"It’s time
that we should uh… have some interaction
00:51:15.000 --> 00:51:19.999
with other normal boys and girls.\"
00:51:20.000 --> 00:51:24.999
The same behavioral assistance that work with
them at home, act as their aides in preschool.
00:51:25.000 --> 00:51:29.999
It’s a new environment for Tyler, one that’s
challenging him to practice in the real world,
00:51:30.000 --> 00:51:34.999
the skills he’s been taught at home. We’ve
built a lot of flexibility into him,
00:51:35.000 --> 00:51:39.999
that he follows a schedule and he plays different toys and
he plays with them all appropriately, take some turns now
00:51:40.000 --> 00:51:44.999
and he’s learning to share.
00:51:45.000 --> 00:51:49.999
Some of the biggest skills
00:51:50.000 --> 00:51:54.999
working on with him is imitation. They need to watch
people around him and imitate what they’re doing
00:51:55.000 --> 00:51:59.999
because once he can imitate, he can
really learn a lot of skills by watching.
00:52:00.000 --> 00:52:04.999
Help, wanna go outside
and hit a water balloon.
00:52:05.000 --> 00:52:09.999
There’s a water balloon. Outside,
okay, let’s go, let’s go.
00:52:10.000 --> 00:52:14.999
Super soccer. Oh, a super soccer, okay.
00:52:15.000 --> 00:52:19.999
Let’s have super soccer. Okay. The boys
have been in the program for 10 months now.
00:52:20.000 --> 00:52:24.999
Alex has gone from one word sentences to enjoying
the back and forth of everyday conversation.
00:52:25.000 --> 00:52:29.999
Don’t shoot me, Alex.
Don’t… don’t you shoot, no!
00:52:30.000 --> 00:52:34.999
He’s having a really interest in people,
00:52:35.000 --> 00:52:39.999
which is huge. He really wants to talk to you and really wants to be
social with you, he just doesn’t always know the words yet to say it.
00:52:40.000 --> 00:52:44.999
[sil.]
00:52:45.000 --> 00:52:49.999
My dream for my boys would be that they
could be the best that they could be
00:52:50.000 --> 00:52:54.999
and I’ve seen such a great
success with this program.
00:52:55.000 --> 00:52:59.999
I am, I am in fear that when they
turned six and the funding is cut,
00:53:00.000 --> 00:53:04.999
that they will regress
and spiral downwards.
00:53:05.000 --> 00:53:09.999
Umm… And then, it will be very,
that would be an awful thing for me
00:53:10.000 --> 00:53:14.999
because I still have hopes and
dreams that they will go to college
00:53:15.000 --> 00:53:19.999
or university and I still, faithfully,
every month put money aside for that.
00:53:20.000 --> 00:53:24.999
[sil.]
00:53:25.000 --> 00:53:29.999
In the past, children with
autism weren’t given a chance
00:53:30.000 --> 00:53:34.999
to reach their potential. They were written off,
institutionalized and lost to their parents.
00:53:35.000 --> 00:53:39.999
Today, with treatment, they are
able to live with their families
00:53:40.000 --> 00:53:44.999
and be part of the community and that’s what
galvanizes parents to fight for funding
00:53:45.000 --> 00:53:49.999
for treatment and access to services.
It’s clear there’s a long way to go
00:53:50.000 --> 00:53:54.999
before every child with autism
has the intervention they need
00:53:55.000 --> 00:53:59.999
but the good news is unlike the
past, today there is hope.
00:54:00.000 --> 00:54:05.000
[sil.]
Distributor: National Film Board of Canada
Length: 54 minutes
Date: 2005
Genre: Expository
Language: English
Closed Captioning: Available
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