The distressing story of the filmmaker's son Adam, a 12-year-old with…
Autism: The Road Back
 
									- Description
- 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
 
 00:00:00.000 --> 00:00:04.999
 [sil.]
 
 00:00:05.000 --> 00:00:09.999
 Normally, he is very
 isolated and very alone.
 
 00:00:10.000 --> 00:00:14.999
 Temper tantrums are fairly
 common with Taylor.
 
 00:00:15.000 --> 00:00:19.999
 What have you got? I could remember,
 he was standing right here
 
 00:00:20.000 --> 00:00:24.999
 and all of a sudden, he just
 gone, like the eyes were blank
 
 00:00:25.000 --> 00:00:29.999
 and I would go, Colin, Colin
 and then he come back.
 
 00:00:30.000 --> 00:00:34.999
 A, little a. My kid is evaporating,
 
 00:00:35.000 --> 00:00:39.999
 okay, the person I knew, as a
 child, and who he is, as a person,
 
 00:00:40.000 --> 00:00:44.999
 is disappearing in front of my eyes.
 
 00:00:45.000 --> 00:00:49.999
 The goodness part of this is that, yes, your child
 has a disorder but there is absolutely no reason
 
 00:00:50.000 --> 00:00:54.999
 why this child cant lead
 a happy, contented life.
 
 00:00:55.000 --> 00:01:00.000
 [music]
 
 00:01:05.000 --> 00:01:09.999
 No, no, no. Gentle feet.
 
 00:01:10.000 --> 00:01:14.999
 No, no.
 
 00:01:15.000 --> 00:01:19.999
 Gentle, that hurts. Three year old, Blake Gerlach(ph) is
 here at B.C.’s Childrens Hospital with his mom, Cyndi,
 
 00:01:20.000 --> 00:01:24.999
 to meet with child psychiatrist Dr.
 Vik Dua.
 
 00:01:25.000 --> 00:01:29.999
 My first concerns with Blake is, is the
 lack of speech. I had some concerns
 
 00:01:30.000 --> 00:01:34.999
 because he seemed to not know what to do with children
 his own age. He would get aggressive with them,
 
 00:01:35.000 --> 00:01:39.999
 he would hit them. Blake is
 being assessed for autism,
 
 00:01:40.000 --> 00:01:44.999
 a disorder that impairs a child’s ability
 to communicate and to interact with others.
 
 00:01:45.000 --> 00:01:49.999
 Autism is a brain disorder, children
 are born with. The best evidence
 
 00:01:50.000 --> 00:01:54.999
 we have right now, is that it probably occurs with an insult to
 the brain somewhere in the first twenty eight days of gestation.
 
 00:01:55.000 --> 00:01:59.999
 Well, I got. No… Autism
 is a spectrum disorder.
 
 00:02:00.000 --> 00:02:04.999
 The symptoms can range from mild to severe and
 no two children have exactly the same symptoms.
 
 00:02:05.000 --> 00:02:09.999
 There’s a variety of terms autistic
 disorder, autism, Asperger’s disorder,
 
 00:02:10.000 --> 00:02:14.999
 Asperger Syndrome, pervasive
 developmental disorder,
 
 00:02:15.000 --> 00:02:19.999
 all of those terms represent one
 definition of a small piece of
 
 00:02:20.000 --> 00:02:24.999
 this large autism puzzle.
 It’s a lifelong disability,
 
 00:02:25.000 --> 00:02:29.999
 four times more common in boys than in
 girls. The symptoms usually don’t appear
 
 00:02:30.000 --> 00:02:34.999
 until 18 months or later. The classic
 example is a child won’t learn to speak,
 
 00:02:35.000 --> 00:02:39.999
 won’t use any language in any communicative
 way, umm… they don’t make eye contact,
 
 00:02:40.000 --> 00:02:44.999
 they may begin to engage in some repetitive
 behaviors like flapping their hands
 
 00:02:45.000 --> 00:02:49.999
 or finger movements or twirling toys or looking
 at things from the side of their eyes. Ready.
 
 00:02:50.000 --> 00:02:54.999
 Set. Set. Go.
 
 00:02:55.000 --> 00:02:59.999
 There is no single medical
 test used to diagnose autism.
 
 00:03:00.000 --> 00:03:04.999
 In B.C., it’s done by a
 multi-disciplinary team.
 
 00:03:05.000 --> 00:03:09.999
 A speech and language pathologist, a pediatrician,
 and a psychologist or psychiatrist.
 
 00:03:10.000 --> 00:03:14.999
 Children of this age,
 particularly, the younger ones
 
 00:03:15.000 --> 00:03:19.999
 are really complicated to assess and
 have the clear answers. You really need
 
 00:03:20.000 --> 00:03:24.999
 different perspectives on the problem
 in order to get a clear answer.
 
 00:03:25.000 --> 00:03:29.999
 Ready. Set. Set. Set, go. Go.
 
 00:03:30.000 --> 00:03:34.999
 Doctor Dua observes
 
 00:03:35.000 --> 00:03:39.999
 how Blake behaves compared
 to a typical child his age.
 
 00:03:40.000 --> 00:03:44.999
 With the balloon he was able to carry
 out the request to a certain degree.
 
 00:03:45.000 --> 00:03:49.999
 The extent of his requests
 was dropping it on me.
 
 00:03:50.000 --> 00:03:54.999
 He… he did get it to my hand at one point.
 
 00:03:55.000 --> 00:03:59.999
 [sil.]
 
 00:04:00.000 --> 00:04:04.999
 Dr. Dua waits to see if Blake will
 
 00:04:05.000 --> 00:04:09.999
 ask him to blow up the balloon again.
 
 00:04:10.000 --> 00:04:14.999
 I didn’t get the sense other than him
 dropping it on my lap and in my hand,
 
 00:04:15.000 --> 00:04:19.999
 that he was actually engaging with me.
 Transit, yes, I know you are another person
 
 00:04:20.000 --> 00:04:24.999
 who has this power to blow up this balloon
 and I need to get you to… to listen to
 
 00:04:25.000 --> 00:04:29.999
 what I want you to do and then do it.
 With the bubbles, he showed an interest
 
 00:04:30.000 --> 00:04:34.999
 in the bubbles obviously, so you got it, you knew that he
 had an interest and motivation and wanted to continue.
 
 00:04:35.000 --> 00:04:39.999
 At no point in that did he ever make eye contact with
 you. Even in the quest when you’re pushing it down
 
 00:04:40.000 --> 00:04:44.999
 other than he wanted to blow it on my face.
 
 00:04:45.000 --> 00:04:49.999
 [sil.]
 
 00:04:50.000 --> 00:04:54.999
 One week after this visit, Blake
 was diagnosed with autism.
 
 00:04:55.000 --> 00:04:59.999
 [music]
 
 00:05:00.000 --> 00:05:04.999
 The Autism Society of B.C. is often the first
 stop for parents looking for information
 
 00:05:05.000 --> 00:05:09.999
 about how to find help for their child. There’s a number of
 things that we could help you with. Probably, the first thing
 
 00:05:10.000 --> 00:05:14.999
 you want to do is get a copy of our new parent
 package. The B.C. government provides money
 
 00:05:15.000 --> 00:05:19.999
 for treatment up to $20,000 a
 year, for a child under six.
 
 00:05:20.000 --> 00:05:24.999
 After their sixth birthday, that
 amount drops to 6,000 a year.
 
 00:05:25.000 --> 00:05:29.999
 This money is paid directly to the
 parents and then the onus is on them
 
 00:05:30.000 --> 00:05:34.999
 to find treatment. The
 parents rule is to act
 
 00:05:35.000 --> 00:05:39.999
 as we call with a case manager for their child’s
 intervention. You respect that what that is.
 
 00:05:40.000 --> 00:05:44.999
 You’re the interface to the medical team to the
 family, you’re the interface for the school
 
 00:05:45.000 --> 00:05:49.999
 to the family, you’re the interface for whatever other
 sort of intervention you’re doing with your child.
 
 00:05:50.000 --> 00:05:54.999
 At a point in time, where you’re reeling
 from the diagnosis and trying to deal with
 
 00:05:55.000 --> 00:05:59.999
 all the emotional issues around that, and people are
 telling you that, you know, you need to do this quickly
 
 00:06:00.000 --> 00:06:04.999
 because early intervention works the best and,
 you know, you have a wind of opportunity here,
 
 00:06:05.000 --> 00:06:09.999
 you also having to read
 volumes on uh… competing
 
 00:06:10.000 --> 00:06:14.999
 uh… models of intervention. You’re having
 to interview different consultants and say,
 
 00:06:15.000 --> 00:06:19.999
 \"Well, which consultant would be the best for my
 child, or what style.\" Plus, it’s in a culture
 
 00:06:20.000 --> 00:06:24.999
 where there’s a lot of passion umm… and…
 and picking a particular orientation
 
 00:06:25.000 --> 00:06:30.000
 can be very difficult. So, it’s… it’s
 very difficult I think for families.
 
 00:06:35.000 --> 00:06:39.999
 So my favorite part about
 Taylor’s play was when Park put…
 
 00:06:40.000 --> 00:06:44.999
 put the guy to sleep with the flower.
 I just put them up
 
 00:06:45.000 --> 00:06:49.999
 like pushing on his eyes. When Tamara
 and Mike Leger started a family,
 
 00:06:50.000 --> 00:06:54.999
 they had what many would consider an ideal
 life, their careers were on the fast track.
 
 00:06:55.000 --> 00:06:59.999
 Tamara was an executive in the dot com
 boom and Mike worked in advertising.
 
 00:07:00.000 --> 00:07:04.999
 They had two healthy sons.
 
 00:07:05.000 --> 00:07:09.999
 The eldest Taylor started to walk and
 talk at an exceptionally young age
 
 00:07:10.000 --> 00:07:14.999
 and his little brother Winston appeared to
 be following in his footsteps. By 8 months,
 
 00:07:15.000 --> 00:07:19.999
 he could count to 20 and he knew
 all the letters of the alphabet.
 
 00:07:20.000 --> 00:07:24.999
 A, B… A, B, C, D. Little a… But
 shortly after this video was taken,
 
 00:07:25.000 --> 00:07:29.999
 Winston started to change.
 I think, when we knew
 
 00:07:30.000 --> 00:07:34.999
 that there was something really wrong was
 just an inflexibility on certain things,
 
 00:07:35.000 --> 00:07:39.999
 like, all he ate was poured, sure it is,
 it was poured, poured, poured, poured.
 
 00:07:40.000 --> 00:07:44.999
 It’s that, you know, go outside this box
 and you get freak out, you get episodes,
 
 00:07:45.000 --> 00:07:49.999
 you get, you know, meltdowns.
 These tantrums became more common
 
 00:07:50.000 --> 00:07:54.999
 and they often occurred when they were in public places like
 a shopping mall. There were tantrums that wouldn’t last
 
 00:07:55.000 --> 00:07:59.999
 5 minutes or 10 minutes, half an hour, 45 minutes…
 Yeah, freaking out. …until you would like
 
 00:08:00.000 --> 00:08:04.999
 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…
 
 00:08:05.000 --> 00:08:09.999
 …he’s still freaking out. …like, screaming, and crying,
 and pounding his fist, and popping his seat belt,
 
 00:08:10.000 --> 00:08:14.999
 and… and banging his head,
 you know, and head butting,
 
 00:08:15.000 --> 00:08:19.999
 and angry, just angry. They also
 noticed that while Winston would play
 
 00:08:20.000 --> 00:08:24.999
 alongside other children, he
 wouldn’t actually play with them,
 
 00:08:25.000 --> 00:08:29.999
 he seemed to be pulling more and more
 inside of himself. What’s your name?
 
 00:08:30.000 --> 00:08:34.999
 Winston. What’s your name?
 What’s your name?
 
 00:08:35.000 --> 00:08:39.999
 Kevin’s asking you question, Winston. What’s your
 name? Winston? It was like seeing him evaporate.
 
 00:08:40.000 --> 00:08:44.999
 It was the eye contact. And I remember at one
 point, cupping my eyes, like, around and going,
 
 00:08:45.000 --> 00:08:49.999
 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,
 
 00:08:50.000 --> 00:08:54.999
 looking here and looking there and just not engaging.
 And, I mean, as a parent, like, it’s, like,
 
 00:08:55.000 --> 00:08:59.999
 you’re… you’re thinking, you know,
 this is a worst case scenario,
 
 00:09:00.000 --> 00:09:04.999
 I’m losing my child right in front of my
 eyes. Just after his fourth birthday,
 
 00:09:05.000 --> 00:09:09.999
 Winston was diagnosed with
 mild high functioning autism.
 
 00:09:10.000 --> 00:09:14.999
 The future is just kind of blown out the window
 and as a parent, that was a real struggle
 
 00:09:15.000 --> 00:09:19.999
 because you get the diagnosis and there was no
 concrete help, it was, like, you have autism.
 
 00:09:20.000 --> 00:09:24.999
 Here are three social workers
 and a box of Kleenex to discuss
 
 00:09:25.000 --> 00:09:29.999
 what your future will look like and I
 would have been okay with the diagnosis,
 
 00:09:30.000 --> 00:09:34.999
 if somebody was there to treat my child. Yes, you
 have autism, here’s what we’re gonna do about it
 
 00:09:35.000 --> 00:09:39.999
 umm… and that was, that
 was not provided for us.
 
 00:09:40.000 --> 00:09:44.999
 And so, we spent a year in a really dark
 black place trying to find a way out.
 
 00:09:45.000 --> 00:09:49.999
 [sil.]
 
 00:09:50.000 --> 00:09:54.999
 Dr. Pat Mirenda is currently
 heading up a research project
 
 00:09:55.000 --> 00:09:59.999
 evaluating the outcomes of early intervention
 programs for children with autism in B.C.
 
 00:10:00.000 --> 00:10:04.999
 we know a few things are really critical
 about intervention for kids with autism.
 
 00:10:05.000 --> 00:10:09.999
 The first one is to start
 early, early is better period.
 
 00:10:10.000 --> 00:10:14.999
 Umm… 8, 12 months, if the diagnosis
 is made 18 months, 2 years, whatever.
 
 00:10:15.000 --> 00:10:19.999
 Umm… It is really important to start early.
 The second piece is intensity.
 
 00:10:20.000 --> 00:10:24.999
 There needs to be a lot
 of whatever it is, right?
 
 00:10:25.000 --> 00:10:29.999
 Umm… Not, you know, well, that you go to preschool a
 couple have of half days a week, that’s not enough.
 
 00:10:30.000 --> 00:10:34.999
 It needs to be intensive, it needs to be one to one,
 it needs to be designed individually for that child.
 
 00:10:35.000 --> 00:10:39.999
 The Autism Society can direct parents
 to a list of behavioral consultants
 
 00:10:40.000 --> 00:10:44.999
 provided by the provincial government.
 These consultants set up
 
 00:10:45.000 --> 00:10:49.999
 treatment programs for children with
 autism. They offer different approaches
 
 00:10:50.000 --> 00:10:54.999
 to treatment but these approaches are not indicated
 on the website, so parents have to do their homework.
 
 00:10:55.000 --> 00:10:59.999
 Parent wants to talk about consulting.
 
 00:11:00.000 --> 00:11:04.999
 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,
 
 00:11:15.000 --> 00:11:19.999
 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.
 
 00:11:25.000 --> 00:11:29.999
 I’m gonna build space station then, it’s fine.
 To build the ships, okay? Like many parents,
 
 00:11:30.000 --> 00:11:34.999
 Mike and Tamara, first, tried on their own to
 find something that would bring Winston back.
 
 00:11:35.000 --> 00:11:39.999
 They had some success using
 these two books as a guide.
 
 00:11:40.000 --> 00:11:44.999
 But they soon realized that to move Winston to the
 next level, they would need professional help.
 
 00:11:45.000 --> 00:11:49.999
 [sil.]
 
 00:11:50.000 --> 00:11:54.999
 Good morning, Early Autism Project. Can I help you?
 Mike and Tamara found the help they needed, here,
 
 00:11:55.000 --> 00:11:59.999
 at the Early Autism Project. Glen
 Sallows is a child psychologist
 
 00:12:00.000 --> 00:12:04.999
 who brought this treatment program
 to British Columbia from Wisconsin.
 
 00:12:05.000 --> 00:12:09.999
 …with smart questions? Yeah.
 Can you tell me three animals?
 
 00:12:10.000 --> 00:12:14.999
 What are three animals?
 
 00:12:15.000 --> 00:12:19.999
 Two years ago, he assessed
 Winston and got him started on
 
 00:12:20.000 --> 00:12:24.999
 an intensive treatment program based on Applied
 Behavioral Analysis often referred to as ABA.
 
 00:12:25.000 --> 00:12:29.999
 Tell me another animal.
 
 00:12:30.000 --> 00:12:34.999
 The basic approach is a one to one intensive
 teaching strategy where we look at the child,
 
 00:12:35.000 --> 00:12:39.999
 we figure out what doesn’t he know how to do
 and then we teach it, just very directly.
 
 00:12:40.000 --> 00:12:44.999
 Tell me what is first?
 
 00:12:45.000 --> 00:12:49.999
 The helicopter is first.
 Helicopter is first. Good.
 
 00:12:50.000 --> 00:12:54.999
 Applied Behavioral Analysis is an adult driven
 highly structured approach to learning.
 
 00:12:55.000 --> 00:12:59.999
 [sil.]
 
 00:13:00.000 --> 00:13:04.999
 This home video was from one of
 Winston’s first therapy sessions.
 
 00:13:05.000 --> 00:13:09.999
 At this point, he had words but he
 didn’t always understand their meaning.
 
 00:13:10.000 --> 00:13:14.999
 Who’s last? Say who is last. Who is last.
 Jane is (inaudible).
 
 00:13:15.000 --> 00:13:19.999
 Who’s last, say pooh. Pooh is last?
 That’s right. Pooh is last. Who is last?
 
 00:13:20.000 --> 00:13:24.999
 Enough. Which one’s last?
 
 00:13:25.000 --> 00:13:29.999
 Pooh is last. Say pooh. Pooh is last. To teach
 language, we need the child to imitate.
 
 00:13:30.000 --> 00:13:34.999
 Artistic children are famous for not
 imitating. They don’t pay attention to people,
 
 00:13:35.000 --> 00:13:39.999
 their eye contact is poor with people. Uh… they don’t watch
 what people do very much and they don’t imitate them,
 
 00:13:40.000 --> 00:13:44.999
 whereas non-artistic children learn a lot
 just by watching what other people do.
 
 00:13:45.000 --> 00:13:49.999
 So, we need to teach a child as a
 child to imitate. Who is first?
 
 00:13:50.000 --> 00:13:54.999
 Helicopter is first. Jennifer
 Newland is the senior supervisor
 
 00:13:55.000 --> 00:13:59.999
 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.
 
 00:14:10.000 --> 00:14:14.999
 Then we would inspect the
 response from Winston.
 
 00:14:15.000 --> 00:14:19.999
 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…
 
 00:17:00.000 --> 00:17:04.999
 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.]
 
		 
		