October 16, 2019 • 34 mins
Obtaining an Autism diagnosis for their child is a daunting prospect for many parents. So on this episode, we talk about what it really means. What is the process like, and what are the benefits? We'll hear from Sarah Benedetti, a mom whose son was recently diagnosed, and Dr. Nicole Ricci-Stiles, a specialist in diagnosing children with Autism Spectrum Disorder. We'll also meet Andrew, a successful computer programmer who will share his feelings about never having received an official diagnosis, though he's lived with Autism his whole life. A spectrum of responses to help you navigate the spectrum!
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Katie Bennison (00:04):
Welcome to Life on the Spectrum. I'm your host, Katie
Bennison. I'm a broadcaster, special education assistant and the mom
of two daughters, one of whom, Sophie, has autism. I'm
so glad you decided to join me today for our
first ever episode. I hope this will be a place
you come to regularly for information, support, and inspiration for
(00:24):
living with autism. Let's begin at the beginning, I want
to talk about diagnosis and given the complexity of autism
spectrum disorder and all the different ways that can show
up in a child, parents sometimes find the diagnosis process
extremely overwhelming and daunting and they wonder if it's stigmatizing,
whether having a diagnosis ultimately makes a difference. On the
(00:46):
other hand, some parents are desperate to receive a diagnosis
so that they can commence treatment and start helping their
child benefit from government subsidies for therapy. Navigating the diagnosis
process is just something most parents of children with autism
eventually have to deal with.
Speaker 2 (01:02):
There's a part of you that wants to know and
there's another part of you that doesn't want to know.
So when you know you can't unknow it, but also
when you know, you can get access to help.
Speaker 3 (01:16):
When you have the diagnosis, there is an answer to
many questions that you're dealing with like, " Why is he
behaving like this? What is it? Am I doing this
right? Am I doing this wrong?"
Speaker 4 (01:28):
This is a journey that the more information, the more
tools, the more resources you have along is extremely important.
For me, it's taken several years to understand how to
be the right parent for my son.
Speaker 2 (01:45):
After that diagnosis, there was certainly a grieving process around what
did it mean for his future.
Speaker 5 (01:52):
It's about knowing just some idea of what you're dealing
with and in the end it's the funding and the
access to different programs at schools and preschools.
Speaker 2 (02:03):
My kid would come home and he's like, " Why am
I so upset all the time? No one else is
upset. I don't get it. What's wrong with me?" And
when we were able to tell him like at least
he knows he can also put a name to it.
It's like it's not there's something wrong with you, you
need different tools and that's okay.
Katie Bennison (02:18):
Those were just a few of the voices from our
parent round table, a group of parents of teens living
with autism. And as you heard, diagnosis played a key
role for each of them in unlocking treatment for their
child. But still it can be scary, right? Putting a
label on your child, what does it really signify? Look,
my daughter's 15 and I still remember what it felt
(02:40):
like to receive her diagnosis. A very emotional time. And
of course a lot of questions. So in this episode
I want to take a close look at what an
ASD diagnosis really means. What is the process actually involved
and what are the reasons to get a formal diagnosis
if you suspect your child may be on the spectrum.
(03:01):
Well, to help me examine some of these questions, I'm
joined by Sarah Benedetti. Sarah lives in Burnaby, British Columbia.
She's the mum of two young boys, Remy and Rio,
and Remy was just diagnosed in May, 2019 with autism.
Sarah, thanks so much for joining me.
Sarah Benedetti (03:18):
You're very welcome. Happy to help.
Katie Bennison (03:20):
So can you tell me a little bit about Remy? First
of all, how old is he?
Sarah Benedetti (03:24):
He is just over two and a half years old.
His birthday's in November.
Katie Bennison (03:29):
When did you get the diagnosis?
Sarah Benedetti (03:32):
On a rainy day, May 17th, this year.
Katie Bennison (03:36):
If we can sort of rewind a little bit, what
were some of the signs that made you seek professional help?
Sarah Benedetti (03:44):
The main sign was Remy did not eat. He was
strictly on a bottle until he was two years of
age with PediaSure, formula then PediaSure. He would not put
anything in his mouth that was food- related.
Katie Bennison (03:59):
So how did you go from that to figuring out
that he may need to be tested for autism? How did that
come up?
Sarah Benedetti (04:09):
It took some time, but it wasn't until I actually
got professional help through behavioral therapy for his feeding that
I was sitting in a waiting room where there was
two other boys and they both had autism that was
also seeking the same service. And I thought, " Hmm, I
think I need to really push for this."
Katie Bennison (04:31):
Well, was there someone that suggested it to you professionally?
Sarah Benedetti (04:36):
Only one and I had a bunch of different professionals
work with Remy. It was my Burnaby infant development consultant
and she said it from the very beginning that Remy
should be assessed for autism, which I then brought to
my pediatrician at the time and he said, " Absolutely no
way, Remy is not autistic."
Katie Bennison (04:55):
So as you heard, Sarah was initially discouraged from seeking
an autism diagnosis for Remy. And she listened to the
experts at first, but eventually she trusted her instincts and
she got a second opinion with a different pediatrician.
Sarah Benedetti (05:09):
I brought Remy to his new pediatrician who we sat
down and she played with Remy and of course, checked
his head circumference, weight, height, all the normal things a
pediatrician would do. And you know Remy was nonverbal at
this point. He just kind of babbled like a six- month-
old would and she said, " You know, Remy..." She goes, "
(05:33):
Even though he doesn't say words, he has a conversation
with you and he is social." She's like, " But there's
something slightly off and because of that I'm going to
refer him to Sunny Hill." And I walked out of that
office finally saying, " Someone sees what I see. I have
an amazing son. There is just something off with him.
(05:57):
And the eating thing is one of it." Because at
this time he was eating purees through the help of therapy.
Katie Bennison (06:03):
Sunny Hill Health Center for Children provides assessment and treatment
for children with complex medical, physical and developmental needs. It's
a public funded facility run through BC Children's Hospital. If
you decide to go through the public health care system
for autism testing, and you in British Columbia, chances are Sunny
(06:24):
Hill will be part of your journey.
Sarah Benedetti (06:27):
It was April and he was going through his second
round of therapy to learn how to eat solids. And
I had a meeting with my Burnaby infant development consultant
and I said, " Oh, Remy was referred to Sunny Hill." And
she said, " Oh, that's great." She's like, " Have you thought
about going private?" And I said, " Well no. My pediatrician
(06:47):
said nine to 12 months only. I think I can
wait nine months." I also thought that going private was
going to be around five to $6, 000 and we all
ready just put a huge chunk of money for West
Coast feeding. So I said, " You know what, no, I
can wait." And she goes, " No, your pediatrician's wrong." She goes, "
You can call Sunny Hill right now and they will
tell you the minimum wait time is 16 months." And
(07:10):
she goes, " And you did put a big chunk of
money out but an assessment's around two to $3, 000 and
I think it would be beneficial before." Because at this
point I was also going to do speech therapy out
of my own pocket. She said, " Before you spend any
more money, spend that money towards his assessment." So I said, okay.
Katie Bennison (07:30):
So you went the private route and did you have
any concerns about the testing process before you went in?
Sarah Benedetti (07:40):
You know what, I was just nervous. Remy saw an OT, two
of them. Remy saw a dietician, Remy saw two pediatricians.
And every person I asked, I said, " Why doesn't he
eat?" It was literally the million dollar question and I
just wanted an answer and I went in and saying
(08:00):
that if Remy positive or not, then I did it.
At least I know I went that route and if
he didn't receive a diagnosis then I can lay that
feeling aside and that's all I wanted from that.
Katie Bennison (08:14):
Sarah was nervous going in, but as soon as the
assessment got underway, she felt better. I asked her to
talk me through what she remembers of the process.
Sarah Benedetti (08:26):
It was different than I thought, but not in a
way. It just was very, it was very light. I
wouldn't say it was a stressful experience. When we met
the psychologist at her office, we went into her actual
office and there was toys, and she just started to
play with Remy. And it was just a total play-
based experience. She had a bunch of different toys and
(08:50):
Remy always navigate, like always would choose any automobile like
trucks, planes, anything with a motor and wheels, he wants.
So he immediately gravitated towards a fire truck and they
were just playing. And she would just ask little questions to
Remy to get him to do certain things and sometimes
(09:12):
Remy we would do it and sometimes Remy wouldn't. And being there
sitting and watching, I knew exactly what she'd been looking
for and I knew when Remy wasn't doing it.
Katie Bennison (09:22):
So what did you know that she was looking for?
Sarah Benedetti (09:25):
Saying his name several times and maybe on the fourth
time getting him to actually pay attention to her. And
look, that was the big one. Asking him to do
certain things like, " Pass me the truck or roll the
truck or lift the truck." And he wouldn't do it.
And then you see, " Okay, no, she wants him to
do it." I mean, these are simple examples. So then she'd
(09:47):
incorporate us in the play to get us involved in
it, and he would do fairly well when it came
to us playing with him as someone obviously he's used
to. And then she switched to puzzles and matching, and
he did fairly well with that but would lose interest
extremely quickly. And she was timing every single puzzle or
(10:10):
matching game that he did. And then there was snack
time, which he did not participate in at all. A
little bit of sensory, so touching certain things, sounds, having
something louder, the eye contact, so she'd have bubbles and
seeing if he can follow. It was about an hour and 15
(10:32):
minutes of that. And then there was a break and
then it was going to be the parent questionnaire part. So
I know with a lot of the psychiatrists that I
talked to, they can either do like different days where
they have just the child assessment and then they have
the parent assessment later. I chose to do it in
all one day. So it was about three hours in
(10:54):
total we were there.
Katie Bennison (10:55):
In Sarah's case, the diagnostic process delivered the news that
Remy had autism. And though the news was bittersweet, it
brought Sarah the clarity she had been looking for.
Sarah Benedetti (11:08):
In one way I felt like my world came crumbling
down, and on the other world I wanted to jump and
just be in excitement because it was like, " Finally I got an
answer that I needed, that I needed to hear that
my son did not eat because he has autism." I
also found that I had a lot of support. People
(11:30):
as soon as they... When my family found out... I
mean, we're a tight- knit family, so they were there
for me and then they would tell people and I
be getting messages from a lot of people and saying, "
I'll connect you with this person. My friend son has
autism," or this and that. Instantly, you do feel like you're
part of a community.
Katie Bennison (11:49):
As you can probably tell by now, Sarah is a
pretty proactive mom. So she set about lining up speech
and behavior therapists for Remy right away. And so now
how's it going since you've been receiving... Now you perceived
the diagnosis, are certain things becoming easier? Are you noticing
a difference?
Sarah Benedetti (12:11):
I don't feel like it's easy until the program's set
because I feel like I'm very unsettled, as in I
don't know what it looks like for myself. For when
the therapy happens, since it's done in my home and
I am not to be pretty much in the same
room, you've got to let them do their own thing.
(12:32):
That's where I feel unsettled as well as what does
it look like for Remy? Again, we're dealing with human
beings, so someday Remy is not in the mood to
play and kind of just wants to veg on the
couch all day. So that makes me unsettled, but I
think as time goes on it will get better. And
speech therapy has been now done for one month and
(12:52):
I'm seeing a huge difference. So I can only imagine
the difference that having the behavioral therapy and working with
these people will do. I think the biggest part is
him getting used to so many people coming in and
out of the house, but he loves to play and
he loves people, so it can't be that big of
a deal for him.
Katie Bennison (13:12):
Thank you so much Sarah. It's been a real pleasure
talking to you and I wish you good luck. Sounds
like you're really on your way. You're doing an awesome
job of looking at all the options and I know
that people listening will really appreciate your perspective as they
take their own journey to figure out autism spectrum disorder.
(13:35):
Dr. Nicole Ricci- Stiles is a Grouse Grind enthusiast and
the mom of three young children. She's also a registered
psychologist working at the Fraser Development Clinic, which is a
private clinic in New Westminster, British Columbia. As part of
the team at FDC, Nicole conducts complex developmental and behavioral
condition assessments including diagnosis testing for autism. Nicole is also
(14:00):
a qualified specialist for the BC Autism Assessment Network. I've
asked Nicole to join me to talk about the ins
and outs of getting a child assessed for autism. Hi
Nicole. Welcome to Life on the Spectrum
Dr. Nicole R. (14:15):
Hi Katie. Thanks for having me.
Katie Bennison (14:16):
When parents come to your office, what would you say
is the number one concern they express about the diagnosis
testing process?
Dr. Nicole R. (14:26):
I think in terms of concerns, I think parents are
very interested in getting an answer, getting a very clear
yes or no, so that they can move forward and
they can really start treating and providing some intervention for
their children who clearly have some challenges.
Katie Bennison (14:42):
What would you say is the main benefit to the
child receiving a formal autism diagnosis?
Dr. Nicole R. (14:51):
I think for children, the autism diagnosis in BC is
tied to funding. And so for lots of families that
opens up lots of doors to purchase services for therapies,
for interventions. Also in the school, it opens up doors for
further support, one- on- one support depending on the child.
(15:11):
And so it can really be a bit of a door
opener in terms of getting some real clear answers about
whether or not their child has autism.
Katie Bennison (15:18):
For parents that are waiting or thinking about coming in
for a diagnosis, can you describe what the actual process
is? Because I know there's a few different things that they
do when they come in.
Dr. Nicole R. (15:34):
Yeah, there's a few different components. First, the psychologist would
want to spend quite a bit of time with the
parents asking lots of different questions. And then there'll be
lots of time spent with the child where we will
do a series of different activities. And then the final
part is feedback, where we're sharing results of the assessment with the parents.
Katie Bennison (15:54):
Okay. Let's start with the parent part. It's called the ADI- R?
Dr. Nicole R. (16:00):
Correct. That's our kind of lingo for it. It stands
for Autism Diagnostic Interview, and then it's currently in its
second revision, hence the R for revised. And this is
where the psychologist or clinician has an opportunity to ask
the parents all sorts of things about what their child's
communication skills are like, what their social interaction skills are
(16:22):
like, and whether or not there's a presence of what's
called a restricted or repetitive behavior. So this is a
category where some kids might flap their hands or engage
in other stereotypical mannerisms. They might have fixated interests on
things. So maybe all they want to do is talk
about or play with dinosaurs, for example. It includes the
(16:42):
sensory sensitivities that we know are so common in lots
of little ones and older ones with an autism diagnosis.
And we would ask questions about eye contact and whether
or not there's gestures, and when a child wants something,
how do they go about getting that? Are they asking
parents verbally? Are they pulling hands towards the fridge, for
(17:02):
example? Are they using their eyes? All those sorts of
things. It's a really nice opportunity for parents to share
lots about what's happening in their day- to- day lives
with their kids.
Katie Bennison (17:13):
Then the next step is meeting the child, I guess. When
the child comes in for testing, whether it's private or public.
Dr. Nicole R. (17:24):
When the child comes in, that's really when the fun
starts. I think anyone who works with kids that's really
what they like the most, it's actually interacting with children.
We are looking at kind of problem solving using boards
and language, so kind of verbal problem solving as well
as some visual tasks. So looking at blocks and trying
(17:44):
to copy some blocks, looking at patterns and maybe trying
to match some pictures. And then if the child's verbal
and they're able to answer some questions, maybe answering some
questions about how old they are or something like that.
It's really just an estimate, but it is an opportunity
to kind of enter into the testing at the table
if kids are ready, and it gives us lots of
(18:06):
really helpful information for moving forward, regardless of whether there's
a diagnosis coming or not. After we're finished with the
developmental testing, if the child needs a break, we have
them take a break and then we'll kind of change
the room around a little bit. We're utilizing something that's
called the ADOS. It's the Autism Diagnostic Observation Schedule. It's really
(18:28):
a play- based assessment. Our very youngest module, it's considered
the toddler module. It's for kids between the age of
12 to 30 months that are either pre- verbal or
have single words.
Katie Bennison (18:42):
What types of things will you do with those kids?
Dr. Nicole R. (18:45):
So with this one we start off with something that's
called a free play, where we quite honestly we have
toys scattered on the ground, so that we'll have a
dump truck, we'll have some balls, we'll have some other
kind of nondescript items and we really are interested. I
ask parents to kind of sit back, not to direct
(19:06):
the play or to direct the activities. So it's somewhat
counter intuitive to parenting and especially parenting young children where
you want to point out things and you want to express
interest in things. But we really want to see what
the toddler is interested in on their own. What kind
of spontaneous initiation are they taking with these materials?
Katie Bennison (19:26):
What types of materials would you be using?
Dr. Nicole R. (19:28):
So we would like balls. Did they take a ball
and maybe initiate a game of catch with mom or
dad, or possibly with me as the examiner? Do they
line up their balls? Do they put their balls in
the dump truck and then repetitively dump it out and
that's their play. Does the dump truck go back and
forth and maybe it crashes and there is a big noise? All
(19:49):
those sorts of things we're really just observing what their
play is like, what their initiation is like. Are they
using words during that time? Are they saying, " Truck." And
when they're saying truck, are they coordinating that with a
point? Are they looking at mom or dad or are
they not engaging with the materials at all and just
seem to be quite interested in the door stopper that's
(20:11):
in the corner of the office.
Katie Bennison (20:12):
Okay. And so if they're slightly older, so from three
years to six years old, then what would you do?
Dr. Nicole R. (20:22):
Let's say you've got a four- year- old who's speaking
in little short phrases, there's a greater opportunity for a
few more kind of table tasks. We're still playing with
them. We're still trying to get a sense of what
their eye contact is like, and what their language is
like, and if they're using any gestures. But we are
able to engage in a bit more conversation. So I'm
(20:44):
interested to see if I put a conversational bid, for
example, if that child will pick up on that bid and-
Katie Bennison (20:52):
Give me example, pretend that I'm five, what would you
ask me?
Dr. Nicole R. (20:56):
I wouldn't actually ask you anything. I would say something. So
I might say something like, " My favorite color is pink."
And then I would be kind of waiting and wondering
if you might say, " Oh my favorite color is purple."
And we could have a little conversation about color or
something like that. Our favorites, favorite colors. So it's kind
(21:16):
of putting out statements as opposed to direct questions, which
can quite often turn into a bit of a Q&
A, but it's really just making a comment and seeing,
oh is that child kind of observing and listening, and
do they respond? And do we have a little social
interaction going there? Really we're looking at what is their eye
(21:37):
contact like? And then we're observing, are there stereotyped mannerisms?
So any hand flapping or repetitive jumping up and down.
Do they get really fixated on a certain topic?
Katie Bennison (21:50):
Do you do the testing process? And then the final
part is the results. Can you speak about that?
Dr. Nicole R. (21:58):
Overall when it's time for feedback, this is where we
share the results. So is it a yes or a
no for the most part. And then we talk about
kind of what to do next in terms of steps
for intervention, helping parents and giving them some information about
how to access their funding through the government. And those
(22:20):
feedback sessions can be tearful, they can be tearful for
a number of reasons. Lots of families are kind of
hoping to get a diagnosis because they've known for quite
a while that there is something a little bit different
with their child. Other families are completely taken aback. They
weren't expecting it, so there can be a very wide
(22:43):
range of emotions as I'm sure you can imagine. If
I'm giving a diagnosis for an older child, I typically
don't have them in the room for the first part of
the feedback. I'd never like the idea of talking about
a child while they're sitting in the waiting room. So I
typically say to parents, let's say it's an 18 year
old. I would say, " Let's talk just on our own
(23:06):
as parents and clinician, and then I'm more than happy
to have you bring your child back and I can
go over things in child friendly language." If that's something
that the team wants and if that's something that the parents want
depending on their whole makeup. Sometimes kids kind of nine,
10, 11, 12, I think it's really important information for them to
(23:26):
learn about themselves when parents feel that they're ready.
Katie Bennison (23:30):
There is a climb in diagnosis rates right now. Why
do you think there's such a rise in kids coming
in for testing?
Dr. Nicole R. (23:37):
There's a lot of talk within the professional community that
people are just much more aware of autism as a
diagnosis and people are maybe more willing to access testing.
There's been some discussion that the tools are becoming a
bit more refined and maybe people are doing a better
job of finding it.
Katie Bennison (23:57):
What are you hearing from parents about wait times to
get tested in BC publicly?
Dr. Nicole R. (24:07):
I think the kind of information that's out there for
public consumption is that it takes about 14 to 18
months for families to go through public testing. Private testing
there still absolutely is a wait list. My general sense
of that is it's between six and nine months.
Katie Bennison (24:24):
Whether parents decide to go public or private, what can
they do if they're up against a longer wait list
for testing.
Dr. Nicole R. (24:34):
During that waiting time, I think it can be very
frustrating for families, but if there are services and interventions
that they can access. So there can be publicly funded
speech language therapy that they could get their child involved
with. If there's resources available within the family, they might
have the opportunity to purchase private speech and language therapy.
(24:57):
They can go to social groups, playgroups, Strong Start, library
groups, all those sorts of things, preschool, daycare, all those
things to kind of increase socialization with other same age
peers. I think that would be a really good use
of family's time and resources. It's important for us that
families feel really welcome and really taken care of when
(25:18):
they're going through the process. We know that it's a
very challenging process. Families wait a long time to get
the assessment and it's my job as a clinician to
take them through it as properly as I can, but
also with a big heart and we hope that families
feel that. Thank you very much for having me, Katie.
I've really enjoyed it.
Katie Bennison (25:39):
I've been speaking with Dr. Nicole Ricci- Stiles from the
Fraser Development Clinic. I hope after listening to this interview,
you're starting to feel a little bit more informed about
the diagnosis process and getting a sense of some of
the reasons to pursue a diagnosis. Now, before we move
on, I want to bring someone else into this conversation
about diagnosis. Allow me to introduce you to Andrew.
Andrew (26:03):
The things that kids found interesting and did a lot
of, I didn't. So my set of hobbies would be
very narrow, but very intense.
Katie Bennison (26:17):
Andrew is someone who's pretty certain he's on the spectrum
even though he's never been tested or formerly diagnosed. He
was born and spent the first few years of his
life in Korea before moving to Vancouver, Canada in grade
three. Nowadays, he's a successful software developer. Andrew's mother taught
him a lot of his social skills and he taught
(26:37):
himself the rest. I wanted to get his take on
diagnosis. Andrew, welcome Life on the Spectrum.
Andrew (26:44):
Thanks for having me.
Katie Bennison (26:46):
Let's get back to your childhood and what were some of
the ways you were different from the kids around you?
Andrew (26:54):
I was different in a sense that my speech development
was slower than the rest of my classmates, and I
would say social interaction came slowly. When I was in
preschool and my parents went for the first teachers parents
(27:15):
meeting, I guess I hadn't spoken in class by that
point. So my teacher asked my parents if I could
speak, like if I was a mute or not.
Katie Bennison (27:24):
How did your parents respond?
Andrew (27:26):
I was told that my mom did bring me to
a doctor even before preschool to see if I had some
learning disability or there was anything wrong with me. But
at that time, autism, I don't think was that well
known in South Korea and the doctor just said, " Oh
yeah, he'll eventually develop and come around. So don't worry
(27:47):
too much about it." I must've been like my son's
age, like two and a half or so probably back then.
Katie Bennison (27:55):
What did your parents do when the doctor said, " Oh,
don't worry about it, he'll catch up." What did your
mom decide to do?
Andrew (28:04):
I think my mom, I think that kind of made her relax
a bit more. But I think from her point of
view she kind of saw it as, " Okay, I might
have to spend more time with Andrew to make sure
that he's taught the linguistic skills as well as people
in Trashman skills, social skills." So I think she kind
(28:27):
of doubled her efforts to make sure that I learned
what I needed to learn to do well in school.
Katie Bennison (28:34):
What sorts of things would she teach you?
Andrew (28:37):
The main thing would be besides, I'm assuming just lots
of learning to speak well, it would be simple things
like to make eye contact when you speak to someone
else because I would, I think just avoid eye contact
most of the time. That carried on quite a bit
later. Or I wouldn't speak to other people, interact, be
(29:01):
proactive when introducing myself and getting to know others. And
that's something that she kind of coaxed, I guess, slowly
but consistently to say, " You got to do this, you've
got to do that." When you're young, you take it
as nagging. But as you grew up, you look back and
you appreciate some of that first hour put into that
(29:21):
stage of development.
Katie Bennison (29:23):
When do you think it was that you noticed that something was different?
Andrew (29:27):
I noticed that appropriately in elementary school, the things that
kids found interesting and did a lot of, I didn't.
So my set of hobbies would be narrow but very
intense. And that's true to even this day. For example,
(29:50):
when I got into chess, I would play chess even
as a very young person for three hours straight with
someone else without losing concentration. Or when I got into
computers, that's all I would do till wee hours of
the morning. So when that kind of stuff happens and
then you see the world and talk about, when you
(30:10):
make discussions with your colleagues or your friends or your
schoolmates, you just notice that the things that you're interested
in talking about and the things that fascinate you isn't necessarily
what people, your peers find interesting.
Katie Bennison (30:25):
You are one of the rare people that basically had
therapy from your mother at home. What would you say
in this day and age to parents that think their
child may be on the spectrum? What advice would you
give to that?
Andrew (30:43):
First, get the diagnosis because it's important to know what
you're dealing with in the severity. Maybe I had, as
much as I hate the term like high- functioning autism,
or maybe I had something else, maybe I had severe
delay in speech and social interaction kind of development, but
(31:03):
it's important to know what you're dealing with to know
what kind of help you can get. And try to
get as much help as possible because as I said,
as I told my sister and my wife that, if
I didn't have my mom staying home and taking care
of me pretty much full- time in my development cycle,
(31:23):
I don't think I would have turned out nearly as well as
I have.
Katie Bennison (31:28):
What do you think are the downsides of not being
tested for you?
Andrew (31:32):
It would've been a lot bigger relief for me. Just
kind of understanding why I wasn't quite like others. So
from that perspective, I think it would have made some
parts of my youth easier just to know that I'm
okay. Like this is the diagnosis, this is what I
have to work on. I kind of knew what I
needed to work on, but at the same time it would have
(31:54):
been nice to know why I was lagging behind in
some areas.
Katie Bennison (32:00):
We flash forward to now, and you've had a hugely
successful career. How do you think your autism has helped fuel your work?
Andrew (32:09):
I would like to say that it's not all downsides
to being different. Even though I had difficulty socializing with
others, a lot of times our society rewards someone who
digs deep and learns about and master certain areas. I
(32:30):
firmly believe that my single- mindedness in terms of narrow
interest and digging really deep into whatever I was interested
in, allowed me to succeed in whatever area that I
was interested in. Computer is a very frustrating kind of
an experience for a lot of people. If something doesn't work, they get
(32:52):
frustrated and people give up, but autism can work in
both ways. If you have that tendency to be single-
minded and just be in that narrow focus, you can
do great things that might elude a person that has
say a shorter attention span.
Katie Bennison (33:13):
Andrew, it's really been a pleasure having you and thank
you so much for sharing your journey with Life on
the Spectrum.
Andrew (33:21):
Thanks for having me.
Katie Bennison (33:22):
This is episode one of Life on the Spectrum
Autism Family Podcast. I'm your host, Katie Bennison, and you've
been listening to my conversation with Andrew about what it was
like to grow up on the spectrum without a formal
diagnosis. If you like what you've been hearing, please share
it with your family and friends and hit subscribe on
Apple podcasts or wherever you get your podcasts. Please add
(33:45):
a review too, because it really helps us reach more
people living on the spectrum. Well, that's it for today.
Our next episode will be all about the social challenges
of autism. I hope you'll join us for that. Thanks
so much for listening.
Welcome to Life on the Spectrum. I'm your host, Katie
Bennison. I'm a broadcaster, special education assistant and the mom
of two daughters, one of whom, Sophie, has autism. I'm
so glad you decided to join me today for our
first ever episode. I hope this will be a place
you come to regularly for information, support, and inspiration for
(00:24):
living with autism. Let's begin at the beginning, I want
to talk about diagnosis and given the complexity of autism
spectrum disorder and all the different ways that can show
up in a child, parents sometimes find the diagnosis process
extremely overwhelming and daunting and they wonder if it's stigmatizing,
whether having a diagnosis ultimately makes a difference. On the
(00:46):
other hand, some parents are desperate to receive a diagnosis
so that they can commence treatment and start helping their
child benefit from government subsidies for therapy. Navigating the diagnosis
process is just something most parents of children with autism
eventually have to deal with.
Speaker 2 (01:02):
There's a part of you that wants to know and
there's another part of you that doesn't want to know.
So when you know you can't unknow it, but also
when you know, you can get access to help.
Speaker 3 (01:16):
When you have the diagnosis, there is an answer to
many questions that you're dealing with like, " Why is he
behaving like this? What is it? Am I doing this
right? Am I doing this wrong?"
Speaker 4 (01:28):
This is a journey that the more information, the more
tools, the more resources you have along is extremely important.
For me, it's taken several years to understand how to
be the right parent for my son.
Speaker 2 (01:45):
After that diagnosis, there was certainly a grieving process around what
did it mean for his future.
Speaker 5 (01:52):
It's about knowing just some idea of what you're dealing
with and in the end it's the funding and the
access to different programs at schools and preschools.
Speaker 2 (02:03):
My kid would come home and he's like, " Why am
I so upset all the time? No one else is
upset. I don't get it. What's wrong with me?" And
when we were able to tell him like at least
he knows he can also put a name to it.
It's like it's not there's something wrong with you, you
need different tools and that's okay.
Katie Bennison (02:18):
Those were just a few of the voices from our
parent round table, a group of parents of teens living
with autism. And as you heard, diagnosis played a key
role for each of them in unlocking treatment for their
child. But still it can be scary, right? Putting a
label on your child, what does it really signify? Look,
my daughter's 15 and I still remember what it felt
(02:40):
like to receive her diagnosis. A very emotional time. And
of course a lot of questions. So in this episode
I want to take a close look at what an
ASD diagnosis really means. What is the process actually involved
and what are the reasons to get a formal diagnosis
if you suspect your child may be on the spectrum.
(03:01):
Well, to help me examine some of these questions, I'm
joined by Sarah Benedetti. Sarah lives in Burnaby, British Columbia.
She's the mum of two young boys, Remy and Rio,
and Remy was just diagnosed in May, 2019 with autism.
Sarah, thanks so much for joining me.
Sarah Benedetti (03:18):
You're very welcome. Happy to help.
Katie Bennison (03:20):
So can you tell me a little bit about Remy? First
of all, how old is he?
Sarah Benedetti (03:24):
He is just over two and a half years old.
His birthday's in November.
Katie Bennison (03:29):
When did you get the diagnosis?
Sarah Benedetti (03:32):
On a rainy day, May 17th, this year.
Katie Bennison (03:36):
If we can sort of rewind a little bit, what
were some of the signs that made you seek professional help?
Sarah Benedetti (03:44):
The main sign was Remy did not eat. He was
strictly on a bottle until he was two years of
age with PediaSure, formula then PediaSure. He would not put
anything in his mouth that was food- related.
Katie Bennison (03:59):
So how did you go from that to figuring out
that he may need to be tested for autism? How did that
come up?
Sarah Benedetti (04:09):
It took some time, but it wasn't until I actually
got professional help through behavioral therapy for his feeding that
I was sitting in a waiting room where there was
two other boys and they both had autism that was
also seeking the same service. And I thought, " Hmm, I
think I need to really push for this."
Katie Bennison (04:31):
Well, was there someone that suggested it to you professionally?
Sarah Benedetti (04:36):
Only one and I had a bunch of different professionals
work with Remy. It was my Burnaby infant development consultant
and she said it from the very beginning that Remy
should be assessed for autism, which I then brought to
my pediatrician at the time and he said, " Absolutely no
way, Remy is not autistic."
Katie Bennison (04:55):
So as you heard, Sarah was initially discouraged from seeking
an autism diagnosis for Remy. And she listened to the
experts at first, but eventually she trusted her instincts and
she got a second opinion with a different pediatrician.
Sarah Benedetti (05:09):
I brought Remy to his new pediatrician who we sat
down and she played with Remy and of course, checked
his head circumference, weight, height, all the normal things a
pediatrician would do. And you know Remy was nonverbal at
this point. He just kind of babbled like a six- month-
old would and she said, " You know, Remy..." She goes, "
(05:33):
Even though he doesn't say words, he has a conversation
with you and he is social." She's like, " But there's
something slightly off and because of that I'm going to
refer him to Sunny Hill." And I walked out of that
office finally saying, " Someone sees what I see. I have
an amazing son. There is just something off with him.
(05:57):
And the eating thing is one of it." Because at
this time he was eating purees through the help of therapy.
Katie Bennison (06:03):
Sunny Hill Health Center for Children provides assessment and treatment
for children with complex medical, physical and developmental needs. It's
a public funded facility run through BC Children's Hospital. If
you decide to go through the public health care system
for autism testing, and you in British Columbia, chances are Sunny
(06:24):
Hill will be part of your journey.
Sarah Benedetti (06:27):
It was April and he was going through his second
round of therapy to learn how to eat solids. And
I had a meeting with my Burnaby infant development consultant
and I said, " Oh, Remy was referred to Sunny Hill." And
she said, " Oh, that's great." She's like, " Have you thought
about going private?" And I said, " Well no. My pediatrician
(06:47):
said nine to 12 months only. I think I can
wait nine months." I also thought that going private was
going to be around five to $6, 000 and we all
ready just put a huge chunk of money for West
Coast feeding. So I said, " You know what, no, I
can wait." And she goes, " No, your pediatrician's wrong." She goes, "
You can call Sunny Hill right now and they will
tell you the minimum wait time is 16 months." And
(07:10):
she goes, " And you did put a big chunk of
money out but an assessment's around two to $3, 000 and
I think it would be beneficial before." Because at this
point I was also going to do speech therapy out
of my own pocket. She said, " Before you spend any
more money, spend that money towards his assessment." So I said, okay.
Katie Bennison (07:30):
So you went the private route and did you have
any concerns about the testing process before you went in?
Sarah Benedetti (07:40):
You know what, I was just nervous. Remy saw an OT, two
of them. Remy saw a dietician, Remy saw two pediatricians.
And every person I asked, I said, " Why doesn't he
eat?" It was literally the million dollar question and I
just wanted an answer and I went in and saying
(08:00):
that if Remy positive or not, then I did it.
At least I know I went that route and if
he didn't receive a diagnosis then I can lay that
feeling aside and that's all I wanted from that.
Katie Bennison (08:14):
Sarah was nervous going in, but as soon as the
assessment got underway, she felt better. I asked her to
talk me through what she remembers of the process.
Sarah Benedetti (08:26):
It was different than I thought, but not in a
way. It just was very, it was very light. I
wouldn't say it was a stressful experience. When we met
the psychologist at her office, we went into her actual
office and there was toys, and she just started to
play with Remy. And it was just a total play-
based experience. She had a bunch of different toys and
(08:50):
Remy always navigate, like always would choose any automobile like
trucks, planes, anything with a motor and wheels, he wants.
So he immediately gravitated towards a fire truck and they
were just playing. And she would just ask little questions to
Remy to get him to do certain things and sometimes
(09:12):
Remy we would do it and sometimes Remy wouldn't. And being there
sitting and watching, I knew exactly what she'd been looking
for and I knew when Remy wasn't doing it.
Katie Bennison (09:22):
So what did you know that she was looking for?
Sarah Benedetti (09:25):
Saying his name several times and maybe on the fourth
time getting him to actually pay attention to her. And
look, that was the big one. Asking him to do
certain things like, " Pass me the truck or roll the
truck or lift the truck." And he wouldn't do it.
And then you see, " Okay, no, she wants him to
do it." I mean, these are simple examples. So then she'd
(09:47):
incorporate us in the play to get us involved in
it, and he would do fairly well when it came
to us playing with him as someone obviously he's used
to. And then she switched to puzzles and matching, and
he did fairly well with that but would lose interest
extremely quickly. And she was timing every single puzzle or
(10:10):
matching game that he did. And then there was snack
time, which he did not participate in at all. A
little bit of sensory, so touching certain things, sounds, having
something louder, the eye contact, so she'd have bubbles and
seeing if he can follow. It was about an hour and 15
(10:32):
minutes of that. And then there was a break and
then it was going to be the parent questionnaire part. So
I know with a lot of the psychiatrists that I
talked to, they can either do like different days where
they have just the child assessment and then they have
the parent assessment later. I chose to do it in
all one day. So it was about three hours in
(10:54):
total we were there.
Katie Bennison (10:55):
In Sarah's case, the diagnostic process delivered the news that
Remy had autism. And though the news was bittersweet, it
brought Sarah the clarity she had been looking for.
Sarah Benedetti (11:08):
In one way I felt like my world came crumbling
down, and on the other world I wanted to jump and
just be in excitement because it was like, " Finally I got an
answer that I needed, that I needed to hear that
my son did not eat because he has autism." I
also found that I had a lot of support. People
(11:30):
as soon as they... When my family found out... I
mean, we're a tight- knit family, so they were there
for me and then they would tell people and I
be getting messages from a lot of people and saying, "
I'll connect you with this person. My friend son has
autism," or this and that. Instantly, you do feel like you're
part of a community.
Katie Bennison (11:49):
As you can probably tell by now, Sarah is a
pretty proactive mom. So she set about lining up speech
and behavior therapists for Remy right away. And so now
how's it going since you've been receiving... Now you perceived
the diagnosis, are certain things becoming easier? Are you noticing
a difference?
Sarah Benedetti (12:11):
I don't feel like it's easy until the program's set
because I feel like I'm very unsettled, as in I
don't know what it looks like for myself. For when
the therapy happens, since it's done in my home and
I am not to be pretty much in the same
room, you've got to let them do their own thing.
(12:32):
That's where I feel unsettled as well as what does
it look like for Remy? Again, we're dealing with human
beings, so someday Remy is not in the mood to
play and kind of just wants to veg on the
couch all day. So that makes me unsettled, but I
think as time goes on it will get better. And
speech therapy has been now done for one month and
(12:52):
I'm seeing a huge difference. So I can only imagine
the difference that having the behavioral therapy and working with
these people will do. I think the biggest part is
him getting used to so many people coming in and
out of the house, but he loves to play and
he loves people, so it can't be that big of
a deal for him.
Katie Bennison (13:12):
Thank you so much Sarah. It's been a real pleasure
talking to you and I wish you good luck. Sounds
like you're really on your way. You're doing an awesome
job of looking at all the options and I know
that people listening will really appreciate your perspective as they
take their own journey to figure out autism spectrum disorder.
(13:35):
Dr. Nicole Ricci- Stiles is a Grouse Grind enthusiast and
the mom of three young children. She's also a registered
psychologist working at the Fraser Development Clinic, which is a
private clinic in New Westminster, British Columbia. As part of
the team at FDC, Nicole conducts complex developmental and behavioral
condition assessments including diagnosis testing for autism. Nicole is also
(14:00):
a qualified specialist for the BC Autism Assessment Network. I've
asked Nicole to join me to talk about the ins
and outs of getting a child assessed for autism. Hi
Nicole. Welcome to Life on the Spectrum
Dr. Nicole R. (14:15):
Hi Katie. Thanks for having me.
Katie Bennison (14:16):
When parents come to your office, what would you say
is the number one concern they express about the diagnosis
testing process?
Dr. Nicole R. (14:26):
I think in terms of concerns, I think parents are
very interested in getting an answer, getting a very clear
yes or no, so that they can move forward and
they can really start treating and providing some intervention for
their children who clearly have some challenges.
Katie Bennison (14:42):
What would you say is the main benefit to the
child receiving a formal autism diagnosis?
Dr. Nicole R. (14:51):
I think for children, the autism diagnosis in BC is
tied to funding. And so for lots of families that
opens up lots of doors to purchase services for therapies,
for interventions. Also in the school, it opens up doors for
further support, one- on- one support depending on the child.
(15:11):
And so it can really be a bit of a door
opener in terms of getting some real clear answers about
whether or not their child has autism.
Katie Bennison (15:18):
For parents that are waiting or thinking about coming in
for a diagnosis, can you describe what the actual process
is? Because I know there's a few different things that they
do when they come in.
Dr. Nicole R. (15:34):
Yeah, there's a few different components. First, the psychologist would
want to spend quite a bit of time with the
parents asking lots of different questions. And then there'll be
lots of time spent with the child where we will
do a series of different activities. And then the final
part is feedback, where we're sharing results of the assessment with the parents.
Katie Bennison (15:54):
Okay. Let's start with the parent part. It's called the ADI- R?
Dr. Nicole R. (16:00):
Correct. That's our kind of lingo for it. It stands
for Autism Diagnostic Interview, and then it's currently in its
second revision, hence the R for revised. And this is
where the psychologist or clinician has an opportunity to ask
the parents all sorts of things about what their child's
communication skills are like, what their social interaction skills are
(16:22):
like, and whether or not there's a presence of what's
called a restricted or repetitive behavior. So this is a
category where some kids might flap their hands or engage
in other stereotypical mannerisms. They might have fixated interests on
things. So maybe all they want to do is talk
about or play with dinosaurs, for example. It includes the
(16:42):
sensory sensitivities that we know are so common in lots
of little ones and older ones with an autism diagnosis.
And we would ask questions about eye contact and whether
or not there's gestures, and when a child wants something,
how do they go about getting that? Are they asking
parents verbally? Are they pulling hands towards the fridge, for
(17:02):
example? Are they using their eyes? All those sorts of
things. It's a really nice opportunity for parents to share
lots about what's happening in their day- to- day lives
with their kids.
Katie Bennison (17:13):
Then the next step is meeting the child, I guess. When
the child comes in for testing, whether it's private or public.
Dr. Nicole R. (17:24):
When the child comes in, that's really when the fun
starts. I think anyone who works with kids that's really
what they like the most, it's actually interacting with children.
We are looking at kind of problem solving using boards
and language, so kind of verbal problem solving as well
as some visual tasks. So looking at blocks and trying
(17:44):
to copy some blocks, looking at patterns and maybe trying
to match some pictures. And then if the child's verbal
and they're able to answer some questions, maybe answering some
questions about how old they are or something like that.
It's really just an estimate, but it is an opportunity
to kind of enter into the testing at the table
if kids are ready, and it gives us lots of
(18:06):
really helpful information for moving forward, regardless of whether there's
a diagnosis coming or not. After we're finished with the
developmental testing, if the child needs a break, we have
them take a break and then we'll kind of change
the room around a little bit. We're utilizing something that's
called the ADOS. It's the Autism Diagnostic Observation Schedule. It's really
(18:28):
a play- based assessment. Our very youngest module, it's considered
the toddler module. It's for kids between the age of
12 to 30 months that are either pre- verbal or
have single words.
Katie Bennison (18:42):
What types of things will you do with those kids?
Dr. Nicole R. (18:45):
So with this one we start off with something that's
called a free play, where we quite honestly we have
toys scattered on the ground, so that we'll have a
dump truck, we'll have some balls, we'll have some other
kind of nondescript items and we really are interested. I
ask parents to kind of sit back, not to direct
(19:06):
the play or to direct the activities. So it's somewhat
counter intuitive to parenting and especially parenting young children where
you want to point out things and you want to express
interest in things. But we really want to see what
the toddler is interested in on their own. What kind
of spontaneous initiation are they taking with these materials?
Katie Bennison (19:26):
What types of materials would you be using?
Dr. Nicole R. (19:28):
So we would like balls. Did they take a ball
and maybe initiate a game of catch with mom or
dad, or possibly with me as the examiner? Do they
line up their balls? Do they put their balls in
the dump truck and then repetitively dump it out and
that's their play. Does the dump truck go back and
forth and maybe it crashes and there is a big noise? All
(19:49):
those sorts of things we're really just observing what their
play is like, what their initiation is like. Are they
using words during that time? Are they saying, " Truck." And
when they're saying truck, are they coordinating that with a
point? Are they looking at mom or dad or are
they not engaging with the materials at all and just
seem to be quite interested in the door stopper that's
(20:11):
in the corner of the office.
Katie Bennison (20:12):
Okay. And so if they're slightly older, so from three
years to six years old, then what would you do?
Dr. Nicole R. (20:22):
Let's say you've got a four- year- old who's speaking
in little short phrases, there's a greater opportunity for a
few more kind of table tasks. We're still playing with
them. We're still trying to get a sense of what
their eye contact is like, and what their language is
like, and if they're using any gestures. But we are
able to engage in a bit more conversation. So I'm
(20:44):
interested to see if I put a conversational bid, for
example, if that child will pick up on that bid and-
Katie Bennison (20:52):
Give me example, pretend that I'm five, what would you
ask me?
Dr. Nicole R. (20:56):
I wouldn't actually ask you anything. I would say something. So
I might say something like, " My favorite color is pink."
And then I would be kind of waiting and wondering
if you might say, " Oh my favorite color is purple."
And we could have a little conversation about color or
something like that. Our favorites, favorite colors. So it's kind
(21:16):
of putting out statements as opposed to direct questions, which
can quite often turn into a bit of a Q&
A, but it's really just making a comment and seeing,
oh is that child kind of observing and listening, and
do they respond? And do we have a little social
interaction going there? Really we're looking at what is their eye
(21:37):
contact like? And then we're observing, are there stereotyped mannerisms?
So any hand flapping or repetitive jumping up and down.
Do they get really fixated on a certain topic?
Katie Bennison (21:50):
Do you do the testing process? And then the final
part is the results. Can you speak about that?
Dr. Nicole R. (21:58):
Overall when it's time for feedback, this is where we
share the results. So is it a yes or a
no for the most part. And then we talk about
kind of what to do next in terms of steps
for intervention, helping parents and giving them some information about
how to access their funding through the government. And those
(22:20):
feedback sessions can be tearful, they can be tearful for
a number of reasons. Lots of families are kind of
hoping to get a diagnosis because they've known for quite
a while that there is something a little bit different
with their child. Other families are completely taken aback. They
weren't expecting it, so there can be a very wide
(22:43):
range of emotions as I'm sure you can imagine. If
I'm giving a diagnosis for an older child, I typically
don't have them in the room for the first part of
the feedback. I'd never like the idea of talking about
a child while they're sitting in the waiting room. So I
typically say to parents, let's say it's an 18 year
old. I would say, " Let's talk just on our own
(23:06):
as parents and clinician, and then I'm more than happy
to have you bring your child back and I can
go over things in child friendly language." If that's something
that the team wants and if that's something that the parents want
depending on their whole makeup. Sometimes kids kind of nine,
10, 11, 12, I think it's really important information for them to
(23:26):
learn about themselves when parents feel that they're ready.
Katie Bennison (23:30):
There is a climb in diagnosis rates right now. Why
do you think there's such a rise in kids coming
in for testing?
Dr. Nicole R. (23:37):
There's a lot of talk within the professional community that
people are just much more aware of autism as a
diagnosis and people are maybe more willing to access testing.
There's been some discussion that the tools are becoming a
bit more refined and maybe people are doing a better
job of finding it.
Katie Bennison (23:57):
What are you hearing from parents about wait times to
get tested in BC publicly?
Dr. Nicole R. (24:07):
I think the kind of information that's out there for
public consumption is that it takes about 14 to 18
months for families to go through public testing. Private testing
there still absolutely is a wait list. My general sense
of that is it's between six and nine months.
Katie Bennison (24:24):
Whether parents decide to go public or private, what can
they do if they're up against a longer wait list
for testing.
Dr. Nicole R. (24:34):
During that waiting time, I think it can be very
frustrating for families, but if there are services and interventions
that they can access. So there can be publicly funded
speech language therapy that they could get their child involved
with. If there's resources available within the family, they might
have the opportunity to purchase private speech and language therapy.
(24:57):
They can go to social groups, playgroups, Strong Start, library
groups, all those sorts of things, preschool, daycare, all those
things to kind of increase socialization with other same age
peers. I think that would be a really good use
of family's time and resources. It's important for us that
families feel really welcome and really taken care of when
(25:18):
they're going through the process. We know that it's a
very challenging process. Families wait a long time to get
the assessment and it's my job as a clinician to
take them through it as properly as I can, but
also with a big heart and we hope that families
feel that. Thank you very much for having me, Katie.
I've really enjoyed it.
Katie Bennison (25:39):
I've been speaking with Dr. Nicole Ricci- Stiles from the
Fraser Development Clinic. I hope after listening to this interview,
you're starting to feel a little bit more informed about
the diagnosis process and getting a sense of some of
the reasons to pursue a diagnosis. Now, before we move
on, I want to bring someone else into this conversation
about diagnosis. Allow me to introduce you to Andrew.
Andrew (26:03):
The things that kids found interesting and did a lot
of, I didn't. So my set of hobbies would be
very narrow, but very intense.
Katie Bennison (26:17):
Andrew is someone who's pretty certain he's on the spectrum
even though he's never been tested or formerly diagnosed. He
was born and spent the first few years of his
life in Korea before moving to Vancouver, Canada in grade
three. Nowadays, he's a successful software developer. Andrew's mother taught
him a lot of his social skills and he taught
(26:37):
himself the rest. I wanted to get his take on
diagnosis. Andrew, welcome Life on the Spectrum.
Andrew (26:44):
Thanks for having me.
Katie Bennison (26:46):
Let's get back to your childhood and what were some of
the ways you were different from the kids around you?
Andrew (26:54):
I was different in a sense that my speech development
was slower than the rest of my classmates, and I
would say social interaction came slowly. When I was in
preschool and my parents went for the first teachers parents
(27:15):
meeting, I guess I hadn't spoken in class by that
point. So my teacher asked my parents if I could
speak, like if I was a mute or not.
Katie Bennison (27:24):
How did your parents respond?
Andrew (27:26):
I was told that my mom did bring me to
a doctor even before preschool to see if I had some
learning disability or there was anything wrong with me. But
at that time, autism, I don't think was that well
known in South Korea and the doctor just said, " Oh
yeah, he'll eventually develop and come around. So don't worry
(27:47):
too much about it." I must've been like my son's
age, like two and a half or so probably back then.
Katie Bennison (27:55):
What did your parents do when the doctor said, " Oh,
don't worry about it, he'll catch up." What did your
mom decide to do?
Andrew (28:04):
I think my mom, I think that kind of made her relax
a bit more. But I think from her point of
view she kind of saw it as, " Okay, I might
have to spend more time with Andrew to make sure
that he's taught the linguistic skills as well as people
in Trashman skills, social skills." So I think she kind
(28:27):
of doubled her efforts to make sure that I learned
what I needed to learn to do well in school.
Katie Bennison (28:34):
What sorts of things would she teach you?
Andrew (28:37):
The main thing would be besides, I'm assuming just lots
of learning to speak well, it would be simple things
like to make eye contact when you speak to someone
else because I would, I think just avoid eye contact
most of the time. That carried on quite a bit
later. Or I wouldn't speak to other people, interact, be
(29:01):
proactive when introducing myself and getting to know others. And
that's something that she kind of coaxed, I guess, slowly
but consistently to say, " You got to do this, you've
got to do that." When you're young, you take it
as nagging. But as you grew up, you look back and
you appreciate some of that first hour put into that
(29:21):
stage of development.
Katie Bennison (29:23):
When do you think it was that you noticed that something was different?
Andrew (29:27):
I noticed that appropriately in elementary school, the things that
kids found interesting and did a lot of, I didn't.
So my set of hobbies would be narrow but very
intense. And that's true to even this day. For example,
(29:50):
when I got into chess, I would play chess even
as a very young person for three hours straight with
someone else without losing concentration. Or when I got into
computers, that's all I would do till wee hours of
the morning. So when that kind of stuff happens and
then you see the world and talk about, when you
(30:10):
make discussions with your colleagues or your friends or your
schoolmates, you just notice that the things that you're interested
in talking about and the things that fascinate you isn't necessarily
what people, your peers find interesting.
Katie Bennison (30:25):
You are one of the rare people that basically had
therapy from your mother at home. What would you say
in this day and age to parents that think their
child may be on the spectrum? What advice would you
give to that?
Andrew (30:43):
First, get the diagnosis because it's important to know what
you're dealing with in the severity. Maybe I had, as
much as I hate the term like high- functioning autism,
or maybe I had something else, maybe I had severe
delay in speech and social interaction kind of development, but
(31:03):
it's important to know what you're dealing with to know
what kind of help you can get. And try to
get as much help as possible because as I said,
as I told my sister and my wife that, if
I didn't have my mom staying home and taking care
of me pretty much full- time in my development cycle,
(31:23):
I don't think I would have turned out nearly as well as
I have.
Katie Bennison (31:28):
What do you think are the downsides of not being
tested for you?
Andrew (31:32):
It would've been a lot bigger relief for me. Just
kind of understanding why I wasn't quite like others. So
from that perspective, I think it would have made some
parts of my youth easier just to know that I'm
okay. Like this is the diagnosis, this is what I
have to work on. I kind of knew what I
needed to work on, but at the same time it would have
(31:54):
been nice to know why I was lagging behind in
some areas.
Katie Bennison (32:00):
We flash forward to now, and you've had a hugely
successful career. How do you think your autism has helped fuel your work?
Andrew (32:09):
I would like to say that it's not all downsides
to being different. Even though I had difficulty socializing with
others, a lot of times our society rewards someone who
digs deep and learns about and master certain areas. I
(32:30):
firmly believe that my single- mindedness in terms of narrow
interest and digging really deep into whatever I was interested
in, allowed me to succeed in whatever area that I
was interested in. Computer is a very frustrating kind of
an experience for a lot of people. If something doesn't work, they get
(32:52):
frustrated and people give up, but autism can work in
both ways. If you have that tendency to be single-
minded and just be in that narrow focus, you can
do great things that might elude a person that has
say a shorter attention span.
Katie Bennison (33:13):
Andrew, it's really been a pleasure having you and thank
you so much for sharing your journey with Life on
the Spectrum.
Andrew (33:21):
Thanks for having me.
Katie Bennison (33:22):
This is episode one of Life on the Spectrum
Autism Family Podcast. I'm your host, Katie Bennison, and you've
been listening to my conversation with Andrew about what it was
like to grow up on the spectrum without a formal
diagnosis. If you like what you've been hearing, please share
it with your family and friends and hit subscribe on
Apple podcasts or wherever you get your podcasts. Please add
(33:45):
a review too, because it really helps us reach more
people living on the spectrum. Well, that's it for today.
Our next episode will be all about the social challenges
of autism. I hope you'll join us for that. Thanks
so much for listening.
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