What happens when you uncover a hidden family history that reveals both heartbreak and resilience? Janet's discovery of a banker's box filled with her brother's medical records sparked an unexpected journey into autism's troubling past and ultimately led to her powerful memoir, "The Alien Savant."
Born in the 1950s when autism wasn't recognized as a diagnosis, Janet's brother Michael was simply labeled "mentally retarded" like countless other neurodivergent children of his era. Through intimate family stories and Michael's own remarkable artwork, Janet reconstructs a time when children displaying autistic behaviors were routinely institutionalized rather than supported. Her narrative takes us inside the walls of these facilities, where children with vastly different conditions received generic care rather than tailored education or development opportunities.
What makes this story uniquely powerful is how Janet contrasts Michael's experience with that of her twin grandchildren, both on the autism spectrum but receiving vastly different support in today's world. The evolution from institutional care to individualized education plans represents decades of progress, yet Janet reminds us how recent these changes truly are. Michael's primary mode of communication—detailed drawings that expressed his thoughts when words couldn't—feature throughout the book, offering readers a direct window into his perspective and creativity.
The Alien Savant serves multiple purposes: historical documentation of autism treatment, a loving family tribute, and a call for continued acceptance and understanding. Whether you're personally connected to autism or simply interested in how society's approach to neurodiversity has evolved, this memoir offers valuable insights through one family's deeply personal journey. Find Janet's book on Amazon, Barnes & Noble, Indigo Chapters, or through her website at myguidedpen.com, and join the conversation about how far we've come and where we still need to go in supporting neurodivergent individuals.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
The SJ Child Show is Backford's 13th season.
Join Sarah Bradford and the SJChild Show team as they explore
the world of autism and sharestories of hope and inspiration.
This season we're excited tobring you more autism summits
featuring experts and advocatesfrom around the world.
(00:20):
Go to sjchildsorg to donate andto get more information.
Congratulations on 2024's20,000 downloads and 300
episodes, Hi.
Speaker 3 (00:37):
Welcome to the SJ Childs show today.
Speaker 2 (00:41):
Sounds like 300 episodes you did just in the
last season.
Wow, that's awesome.
Speaker 3 (00:46):
That's almost every day you were that was over all
time, the 300 we just passed it.
Oh, it came.
Yeah, should have.
I guess they should have madethat a little more clear.
But hey, this is.
You know we're doing this so Ican learn what to fix.
I love it.
It's great to have you here,janet, and I'm excited to talk
(01:10):
about your book and learn moreabout your journey.
And yeah, before we get started, tell us a little bit about
yourself.
Speaker 2 (01:19):
Introduce yourself About myself.
Okay, about myself.
Okay, I'm a mother and agrandmother of eight and I grew
up in the.
I was born in the 50s and grewup in the 60s and 70s in
Scarborough, ontario.
I now split my time betweenFlorida.
(01:41):
I have a place in BonitaSprings and I spend the summer
months back here in Ontario ohamazing, I'm retired.
I've been retired about eightyears now.
I love that.
Speaker 3 (02:01):
I'm testing my audio here.
I keep getting a strangefeedback.
Sorry about that.
Everything sounds good at thesame time.
And tell us a little bit aboutthe journey that started for you
(02:26):
with your book.
And you know, why did youdecide to go down that route?
And you know, were you always awriter?
Did you have?
Speaker 2 (02:40):
writers.
I have sort of played around alittle bit, but this is my first
published book.
No, what happened a few yearsago?
We were cleaning out myparents' house, you know, and
getting it ready to sell and Iended up with a lot of the
(03:02):
paperwork you know like out ofmy dad's office and I swear he
kept every piece of paper onearth, but anyway.
And I also had all of mybrother's drawings and you know
I went through them.
I thought, wow, these arereally neat, like I knew about
(03:22):
most of them.
But oh my oh, but oh my gosh,they're falling apart because
they're so old.
But I've got to get these putinto a book for the family,
which was all I originallyintended.
Then I came across a box amongstall these other things, of all
his school reports and all hisdoctor reports and psychiatrist
(03:44):
reports, and I mean this was abanker's box full.
And I went, oh my gosh.
And I started going through itand looking to see what it was
all about and I was stunned Imean these were the reports from
the social workers in that sotelling what went on while he
was in residence in some ofthese places and I thought, oh
(04:06):
my gosh, there's a heck of astory here that people need to
hear, that people need to knowwhat happened many years ago,
back in the 60s, when there wasno special education, there was
no diagnosis of autism.
Any child that behaved in whatwe now call neurodivergent, any
(04:30):
of those children that displayedany kind of behavior that
didn't fit what they thought thenorm should be, these kids were
all pretty much labeledretarded, were all pretty much
labeled retarded, mentallyretarded, and most of the time
it was recommended that they gointo institutional life, that
(04:52):
they be better off with theirown kind.
Well, you know, no, theyweren't.
But that's what happened, andmost of the parents didn't know.
They had to go along with whatthese doctors were telling them,
and so they did, and thesechildren were all lumped
together.
I mean, you know, autisticchildren were with Down syndrome
(05:14):
children, and they were justall together and they just got
care, not any kind of education,any kind of socialization, none
of that.
So like at the time my brotherwas growing up, there were 20
(05:35):
institutions in Ontario and asimilar situation throughout all
the United States too, andthat's where most of these kids
landed.
And it wasn't until the 80sbefore they started realizing
that there were differences,that you know.
Then they started working onthe autism diagnosis.
(05:58):
It was real basic back then.
It wasn't again until they got,you know, further into the late
80s and the 90s that theyreally got a true definition or
criteria to assess a child, youknow.
But we've come a long, long way.
There's still lots to do, butit's a lot better situation now
(06:20):
for the children now.
Now for the children.
Now.
I have twin grandchildren whoare both on the spectrum and two
totally different situations.
They couldn't be more differentas they tried.
But what's wonderful now istheir IEP.
Their program continues fromthe time that they've been
(06:43):
little, you know, four years old, but it still goes on in high
school here, which I discoveredand thought this is wonderful
Because they're not there andthey're also allowed to stay in
high school for five years,knowing that most of them are
going to need that extra time toget things worked out, need
(07:08):
that extra time to uh, to getthings worked out.
And, um, they teach some a lotof social skills, a lot of if
they're a good candidate for itindependent skills, how to live,
you know, uh, function bythemselves.
If they can some, some can,some can't.
So yeah.
So the book took me a couple ofyears to write and it's got a
lot of my brother's pictures init.
(07:31):
I use quite a few of thembecause that's one of his ways
of communicating with hisdrawings.
Wow.
Speaker 3 (07:40):
And you knew he was autistic growing up.
Speaker 2 (07:44):
Well, no, we didn't have a label for it, but I
realized when I was readingthrough the notes and we
certainly realized that once hegot old enough that we, you know
, we realized that that's whatit was, that that's what you
know where he fell into.
Now he was also hearingimpaired and there was some
(08:05):
emotional disturbances as well.
However, you know the main wayhe functioned.
He was a picture thinker.
He worked with his drawings andthat's the way he learned.
Most things was visually, but,yeah, a lot of his behaviors he
would do stimming.
That's the way he learned.
Most things was visually, but,yeah, a lot of his behaviors he
(08:28):
would do stimming.
He would wave his arms and makeodd noises.
That's how he always was.
We were used to it and didn'treally realize that there were
quite a few other children thathad displayed the same behaviors
(08:49):
and had the same issues.
So, not when he was young.
We didn't know.
My parents didn't know what thename was eventually going to be
.
They just knew that he neededextra help and specialized help.
Speaker 3 (09:07):
And that's great that they, you know, were able to
give that to him.
And and how was that for you,as a sibling just to, I, I'm,
I'm an only child, but I have ason and daughter that are just
as this complete opposite endsof the spectrum for another, and
(09:30):
so she will be, you know, hiskeeper, if you will, of his
heart and and whatever for um.
Speaker 2 (09:36):
That's how it worked out at least, and I think it
does most families.
Um, I'm the oldest of five ofus, uh, seven years younger than
me, so I had to not look afterhim, but old enough that I
(09:56):
looked out for him because hewas that much younger than me.
But we accepted the fact that,like initially, all we thought,
okay, he can't hear, he's deaf,so we wore a hearing aid and he
went to deaf school because thatwas available.
(10:17):
Unfortunately, there was nospecial education within or they
weren't able to handle kidslike that that had other
problems along with the hearingimpairment.
So as kids, as siblings, wejust accepted his behaviors.
(10:39):
He had all these odd things thathe'd do.
It was illegal and he hadroutines that had to be this way
or sorry, not functioning.
So we went okay and we wentalong with it.
Everybody did what was neededand we didn't mind that
(11:02):
sometimes Michael would have tohave extra attention from mom
and dad because he needed it.
None of us were.
I don't think nobody wasjealous of the attention that he
got.
No, not at all.
And usually my parents madesure that he participated, like
at birthday parties.
He was always there, you know,like uh sort of thing and doing
(11:26):
his own thing yeah, we have oneof those two doing their own
thing oh yeah, I love it.
Speaker 3 (11:34):
I love it.
Oh, and what, um?
When you put the book together,who did you first share it with
and what were their thoughtsabout that?
Speaker 2 (11:44):
Well, probably my sisters, because they're in it.
I had to make sure that theywere okay.
Well, they were okay with whatI was doing.
Um, probably the.
You know, it was a real familything on that personal level.
Then I found this wonderful,because I had no idea what it
was doing as far as editing andall that sort of thing, and I
(12:09):
found this really cool companythat they help self-publishers
of nonfiction so a memoir fallsinto that category and they
provide all of the differentservices that you might need,
(12:29):
all sort of under one roof.
So I thought, well, that worksgreat for me, because I don't
know what I need.
It's like when I had finishedthe draft and I thought, okay,
it's done.
And when, you know, I handed itoff to them and they went, nope
, there's lots we can do to fixthis.
I went, oh, okay, it needsfixed.
(12:49):
And they did.
They took it from being a goodbook to a really really good
book.
Yeah, I know, and they're awonderful company.
They're called Book Launchers,okay, and they are an American
company, although, it'sinteresting, the lady who runs
it, she's Canadian.
So I thought, okay, we've got aconnection here, a connection
(13:12):
absolutely.
Speaker 3 (13:14):
Yep, wow.
And what about Michael?
Is he still?
He's still around, does, has he?
Speaker 2 (13:21):
seen.
No, he passed away.
He passed away in 21.
Speaker 3 (13:26):
Okay and had.
Did the book come after thatthen?
Speaker 2 (13:30):
Or okay, that's why we were clearing the house out
to sell, my father had, in hiswill he my mother had passed
away in 2005.
Dad died in 2009 and in hiswill, he wanted us to, you know,
uh, a possession of the housewith the stipulation that we had
(13:51):
to have michael stay livingthere, that we couldn't sell it,
that you know, uh, that we hadto and we had to look after him.
So, uh, that's what we did.
Two of my sisters moved intothe house and were physically
there looking after him, and Iwasn't far away, about 30
minutes away from where he lives.
(14:12):
That's great, that's, yeah, sothat's what we did.
Speaker 3 (14:17):
That's amazing.
And what did your sisters thinkof the book?
Speaker 2 (14:21):
Interesting reactions .
The one thinks it's fantasticand she actually helped me.
We went to the Geneva AutismSymposium last November with the
book and she actually came withme and helped me promote it.
And you know the other sister,who's my sensitive sister she
(14:46):
was one of the ones who actuallylived with him and did most of
the teaching him a lot of thingsthat he needed to learn to be
there by himself.
I think she found it hard toread.
It just brought back so manymemories for her.
She actually found it a littledistressing, I think.
(15:07):
But she's totally in support ofit.
And and the youngest sister too, you know like yeah, so oh, I
love that.
Speaker 3 (15:14):
I love that when you went to the Geneva conference
was Rachel Barcelona there.
Did you meet her or see her byany chance?
Speaker 2 (15:26):
There was quite a few really well-known speakers.
Temple Grandin was there.
I did get to meet her and shegot a copy of the book.
I love it.
The girl from the Love on theSpectrum show.
Speaker 3 (15:44):
Danny, yeah, there's so many right.
Speaker 2 (15:50):
David was her boyfriend.
He was there, oh yeah.
Speaker 3 (15:54):
She's so sweet, isn't she?
I haven't had a chance to meether.
Speaker 2 (16:01):
She's a funny soul, like she's just, you know, I I
mean, uh, she, she was talkingto me and all of a sudden you're
wandering off.
Okay, because I know, I knowwhat that is.
So I'm, I'm fine with that.
Yeah, I thought it was kind offunny, but yeah, it was a very
(16:23):
interesting conference.
There were lots of interestingpeople who also had booths and
different products.
They had some new PECS programsand all kinds of different
interesting things that they hadto contribute.
(16:43):
I I did enjoy it very much.
That's wonderful.
Speaker 3 (16:47):
Yeah, love a good conference.
Oh, I love that.
What's in store in the future?
Anything you're going to beworking on or going to be keep
going to conferences andpodcasts?
Uh, there's nothing.
Speaker 2 (17:01):
Yeah, I've got another podcast.
Uh, this one that'll be comingout in july I've done already.
Then there's um.
I've already done autism live.
You probably know she's.
Speaker 3 (17:15):
She's an awesome, awesome lady is that how we
connected, I wonder?
I think it was actually justthrough Shannon.
Shannon and I are good friends,okay.
Speaker 2 (17:27):
I did that podcast.
It came out during April duringAutism Month.
Yeah, in fact, I got to be acouple of days before temple
grand, like yeah, I gotcelebrity status I think you
know that's on there.
If anybody wants to go watch it, it's.
(17:51):
It's an interesting little talkwe had um, because we decided
that she calls herself a ponyright, a parent of a
neurodivergent individual.
Speaker 3 (18:02):
Yeah.
Speaker 2 (18:02):
So I said I guess I'm a grand pony.
Speaker 3 (18:08):
Oh, that's great.
Oh, and how is it being agrandma and everything?
Is it wonderful?
Speaker 2 (18:15):
Oh yeah, oh, absolutely, absolutely.
It really is funny it's whatpeople say about that.
You have all the benefits, likeall the fun stuff, and you know
, and once there's some work todo or cleaning up after
everybody, all right, well bye,oh and live here, uh, here in.
Canada, where I live, I'm likesteps to a beach, a really nice
(18:43):
beach, and during the summerthey have an arcade and all
kinds of.
So the kids come up and hangout with Nana, like Nana's got a
cool house, so that's, that's afun thing and they're're
they're relaxed when they'rehere with me because I I totally
(19:04):
accept them the way they are.
Um, they both have their littlepeculiarities too, you know,
and I'm like, yeah, okay, um,whatever, like the uh, my
granddaughter they're both 15now.
My granddaughter, she's thequiet one, you know, and very
(19:25):
sort of careful about what shesays and when she says it.
And you know, my grandson isthe chatty one he is.
It's, it's really interesting,um.
So now I don't have anythingimmediate coming up, though I do
have one more podcast to dowith, uh, keegan uh, I can't
(19:49):
remember his name now because Ibooked this one a long time ago
and he can't do it till August.
Oh yeah, I don't remember whatI'm doing.
Speaker 3 (20:01):
Oh, that's so nice.
It's nice to chat with you andget to know you more.
What is one message?
Speaker 2 (20:14):
you hope people read the book might get from it.
Um, mainly that if there'ssomebody who doesn't have a lot
of contact with autisticchildren or adults to be, if
they, when they see it, I knowwhat that is and just be a
little more accepting of thatsituation.
That was one of the messages Ihope that type of person who's
(20:46):
reading it, who doesn't reallyknow much about autism, and then
for anybody who does, it's sortof a little history for them as
to how we got to where we're at, and the ones who are working
in the field and working in theagencies and social workers and
(21:08):
all of them, well, a littletakeaway that, hey, you're
appreciated.
You know what you do isimportant, really important,
what you do is important, reallyimportant.
And that, as parents, likeanything you can do to help your
children's teachers and workers, do it, do whatever you can
(21:30):
Offer yourself, say listen, isthere anything I can do to help
you?
And just telling them, justsaying listen, I'm so glad
you're there, part of the day.
It makes my day easier kind ofthing, absolutely For sure.
So that's sort of what I had inmind as I was writing it.
Speaker 3 (21:52):
Yeah, do you have a website we can go to to find the
book?
Speaker 2 (21:57):
Yes, it's called my guided pen, so www, my guided
pen and um.
So there's a bit about the bookand you can order it from there
.
It's available on Amazon Canadaas well as regular Amazon,
(22:23):
barnes and Noble in the StatesIndigo Chapters in Canada.
Speaker 3 (22:29):
Is it com?
I didn't even think about that.
I don't know if Canadiancanadian websites have any other
, you know?
Speaker 2 (22:36):
different.
Well, like amazon is dot ca.
Speaker 3 (22:40):
Yeah, I thought so I thought it was a little bit
canadian side of things.
Yeah, okay, great.
Well, that's wonderful to knowfor people and, um, the title of
the book is the Alien Savant.
Speaker 2 (22:53):
Yep, oops, let me show that, yeah, show us that
real quick.
There we go.
And maybe show us some of thepictures, and that's one of
Michael's drawings on the fronthere.
So there's all his pictures andillustrations are all through
here, all sorts of ones that hedid and describing what he was
trying to describe to us.
(23:13):
As I said, that's how he usedto communicate, because he was
non-verbal and they did try toteach him to talk because, uh
again, deaf children were notallowed to do sign language.
Speaker 3 (23:28):
oh, I was going to ask you about sign language, but
he couldn't even do signlanguage.
Speaker 2 (23:33):
It wasn't permitted.
They wanted all the deafcommunity to learn to speak, and
again it was forced.
You can't do that.
So when sign language wasfinally introduced in the 70s
(23:59):
and allowed, they started toteach him to do some sign
language.
Now the problem with Michael.
This is where the autism got inthe way.
He wouldn't maintain eyecontact because he didn't like
it, so he would do real simplesigns that were a concrete,
meaning that that was somethingthat you could visually show him
.
This is the sign for milk, orthis is you know, this is the
(24:19):
sign for dog.
Um, so he, he learned those ones, but he couldn't sign a
conversation.
Yeah, um so he could, he could,just just so.
He would use signs and his owngestures, his own made up signs,
and then his drawings.
If he wanted something from us,he would usually bring it to us
(24:43):
as a drawing and he would drawin like a cartoon fashion where
each little square would and hewould show you this is how it's
going to start and this is whatI wanted to end up.
And or he would cut picturesout of magazines if he wanted a
particular thing.
He would, um, he would show itto you, bring you a picture and
(25:03):
said this is I want this, and hewould tell me he wants money
yep, I agree, real quick um, buthe was.
He was able to because dadencouraged it for him to go out,
as as when he was older, whenhe was old enough, uh, to go out
with his own money and and goout and buy the things he wanted
(25:26):
to buy, um, yeah.
So he got in trouble, though,though, at one of our dollar
stores.
He loved the dollar storebecause he loved gadgets and all
that you know, there's so manyneat things to look at and but
he had this horrible habit ofrearranging all their shelves,
and because he had to haveeverything, each thing had to be
(25:49):
straight, facing the right way,all fold up, so you know.
And they asked him one day toleave, and he wouldn't leave, so
they had to call the police,and it was kind of sad because
the policeman realized thatsomething was wrong with Michael
, so he followed him home, andthat's when he said, you know,
(26:14):
told my sisters, hey, you know,like, uh, he can't go back in
there cause he, you know, hewon't behave himself.
And I'm like, okay, yeah.
Speaker 3 (26:27):
And what?
Speaker 2 (26:28):
was he doing.
Speaker 3 (26:28):
Come on, let him, let him do it.
Speaker 2 (26:32):
Apparently.
Apparently, we found outafterwards that a couple of the
employees complained to themanager of the store about him
arranging the shelves and hesays what?
You're mad at him because he'sdoing your job.
Speaker 1 (26:50):
Really.
Speaker 3 (26:51):
Yeah.
Speaker 2 (26:53):
But this is just it you could take, could take,
obviously, that's a great talent.
If you do want your stock, yourshelf stocked, you know, and
you can make them understandthat's what you want.
Hey, he's happy for hours doingthat.
But this is what I mean about.
It's just about being acceptinginstead of fighting against it.
(27:16):
You know, uh, because you'reyou're not gonna win, uh,
because because uh, a lot of thetime they can't help it, that
they, they can't stop themselves.
You know it's yeah and okay.
So make it work for you, yeah,or make sure that they know
there's a certain time they'reallowed to do that and and
(27:38):
certain time they're not.
Speaker 3 (27:39):
You know so oh my gosh, it is so true too, oh yeah
days of our lives.
Oh, it's been so great to catchup with you, janet, and I'm so
thankful that you worked on thisproject and put it forth to the
(28:01):
community and, you know,allowed us all to kind of take a
glimpse of those things andwhat an important also the
history.
I think that's a reallyimportant part that probably a
lot of books don't look at, that, don't shine a light on and
highlight that part so that wecan really see the contrast of
(28:22):
how far we've come and and alsoknow how much work needs to be
done all around the world.
In some of these other placeswhere you know the, the work is
just beginning.
So, yeah, true, true, yeah.
Thank you so so much for beinghere and I hope that we can stay
in touch.
Speaker 2 (28:41):
I'm sure we will, Sarah.
You can always email me withanything interesting you think I
need to know.
Speaker 3 (28:47):
Good, good Same here.
I appreciate it.
I really will.
Yeah, thank you so much.
This has been a greatconversation and I really look
forward to staying in touch.
Okay, appreciate it.
I really will.
Yeah, thank you so much.
This has been a greatconversation and I really look
forward to staying in touch.
Speaker 2 (28:57):
Okay, dear.
The SJ Child Show is Backford's 13th season.
Join Sarah Bradford and the SJChild Show team as they explore
the world of autism and sharestories of hope and inspiration.
This season we're excited tobring you more autism summits
featuring experts and advocatesfrom around the world.
(00:20):
Go to sjchildsorg to donate andto get more information.
Congratulations on 2024's20,000 downloads and 300
episodes, Hi.
Speaker 3 (00:37):
Welcome to the SJ Childs show today.
Speaker 2 (00:41):
Sounds like 300 episodes you did just in the
last season.
Wow, that's awesome.
Speaker 3 (00:46):
That's almost every day you were that was over all
time, the 300 we just passed it.
Oh, it came.
Yeah, should have.
I guess they should have madethat a little more clear.
But hey, this is.
You know we're doing this so Ican learn what to fix.
I love it.
It's great to have you here,janet, and I'm excited to talk
(01:10):
about your book and learn moreabout your journey.
And yeah, before we get started, tell us a little bit about
yourself.
Speaker 2 (01:19):
Introduce yourself About myself.
Okay, about myself.
Okay, I'm a mother and agrandmother of eight and I grew
up in the.
I was born in the 50s and grewup in the 60s and 70s in
Scarborough, ontario.
I now split my time betweenFlorida.
(01:41):
I have a place in BonitaSprings and I spend the summer
months back here in Ontario ohamazing, I'm retired.
I've been retired about eightyears now.
I love that.
Speaker 3 (02:01):
I'm testing my audio here.
I keep getting a strangefeedback.
Sorry about that.
Everything sounds good at thesame time.
And tell us a little bit aboutthe journey that started for you
(02:26):
with your book.
And you know, why did youdecide to go down that route?
And you know, were you always awriter?
Did you have?
Speaker 2 (02:40):
writers.
I have sort of played around alittle bit, but this is my first
published book.
No, what happened a few yearsago?
We were cleaning out myparents' house, you know, and
getting it ready to sell and Iended up with a lot of the
(03:02):
paperwork you know like out ofmy dad's office and I swear he
kept every piece of paper onearth, but anyway.
And I also had all of mybrother's drawings and you know
I went through them.
I thought, wow, these arereally neat, like I knew about
(03:22):
most of them.
But oh my oh, but oh my gosh,they're falling apart because
they're so old.
But I've got to get these putinto a book for the family,
which was all I originallyintended.
Then I came across a box amongstall these other things, of all
his school reports and all hisdoctor reports and psychiatrist
(03:44):
reports, and I mean this was abanker's box full.
And I went, oh my gosh.
And I started going through itand looking to see what it was
all about and I was stunned Imean these were the reports from
the social workers in that sotelling what went on while he
was in residence in some ofthese places and I thought, oh
(04:06):
my gosh, there's a heck of astory here that people need to
hear, that people need to knowwhat happened many years ago,
back in the 60s, when there wasno special education, there was
no diagnosis of autism.
Any child that behaved in whatwe now call neurodivergent, any
(04:30):
of those children that displayedany kind of behavior that
didn't fit what they thought thenorm should be, these kids were
all pretty much labeledretarded, were all pretty much
labeled retarded, mentallyretarded, and most of the time
it was recommended that they gointo institutional life, that
(04:52):
they be better off with theirown kind.
Well, you know, no, theyweren't.
But that's what happened, andmost of the parents didn't know.
They had to go along with whatthese doctors were telling them,
and so they did, and thesechildren were all lumped
together.
I mean, you know, autisticchildren were with Down syndrome
(05:14):
children, and they were justall together and they just got
care, not any kind of education,any kind of socialization, none
of that.
So like at the time my brotherwas growing up, there were 20
(05:35):
institutions in Ontario and asimilar situation throughout all
the United States too, andthat's where most of these kids
landed.
And it wasn't until the 80sbefore they started realizing
that there were differences,that you know.
Then they started working onthe autism diagnosis.
(05:58):
It was real basic back then.
It wasn't again until they got,you know, further into the late
80s and the 90s that theyreally got a true definition or
criteria to assess a child, youknow.
But we've come a long, long way.
There's still lots to do, butit's a lot better situation now
(06:20):
for the children now.
Now for the children.
Now.
I have twin grandchildren whoare both on the spectrum and two
totally different situations.
They couldn't be more differentas they tried.
But what's wonderful now istheir IEP.
Their program continues fromthe time that they've been
(06:43):
little, you know, four years old, but it still goes on in high
school here, which I discoveredand thought this is wonderful
Because they're not there andthey're also allowed to stay in
high school for five years,knowing that most of them are
going to need that extra time toget things worked out, need
(07:08):
that extra time to uh, to getthings worked out.
And, um, they teach some a lotof social skills, a lot of if
they're a good candidate for itindependent skills, how to live,
you know, uh, function bythemselves.
If they can some, some can,some can't.
So yeah.
So the book took me a couple ofyears to write and it's got a
lot of my brother's pictures init.
(07:31):
I use quite a few of thembecause that's one of his ways
of communicating with hisdrawings.
Wow.
Speaker 3 (07:40):
And you knew he was autistic growing up.
Speaker 2 (07:44):
Well, no, we didn't have a label for it, but I
realized when I was readingthrough the notes and we
certainly realized that once hegot old enough that we, you know
, we realized that that's whatit was, that that's what you
know where he fell into.
Now he was also hearingimpaired and there was some
(08:05):
emotional disturbances as well.
However, you know the main wayhe functioned.
He was a picture thinker.
He worked with his drawings andthat's the way he learned.
Most things was visually, but,yeah, a lot of his behaviors he
would do stimming.
That's the way he learned.
Most things was visually, but,yeah, a lot of his behaviors he
(08:28):
would do stimming.
He would wave his arms and makeodd noises.
That's how he always was.
We were used to it and didn'treally realize that there were
quite a few other children thathad displayed the same behaviors
(08:49):
and had the same issues.
So, not when he was young.
We didn't know.
My parents didn't know what thename was eventually going to be
.
They just knew that he neededextra help and specialized help.
Speaker 3 (09:07):
And that's great that they, you know, were able to
give that to him.
And and how was that for you,as a sibling just to, I, I'm,
I'm an only child, but I have ason and daughter that are just
as this complete opposite endsof the spectrum for another, and
(09:30):
so she will be, you know, hiskeeper, if you will, of his
heart and and whatever for um.
Speaker 2 (09:36):
That's how it worked out at least, and I think it
does most families.
Um, I'm the oldest of five ofus, uh, seven years younger than
me, so I had to not look afterhim, but old enough that I
(09:56):
looked out for him because hewas that much younger than me.
But we accepted the fact that,like initially, all we thought,
okay, he can't hear, he's deaf,so we wore a hearing aid and he
went to deaf school because thatwas available.
(10:17):
Unfortunately, there was nospecial education within or they
weren't able to handle kidslike that that had other
problems along with the hearingimpairment.
So as kids, as siblings, wejust accepted his behaviors.
(10:39):
He had all these odd things thathe'd do.
It was illegal and he hadroutines that had to be this way
or sorry, not functioning.
So we went okay and we wentalong with it.
Everybody did what was neededand we didn't mind that
(11:02):
sometimes Michael would have tohave extra attention from mom
and dad because he needed it.
None of us were.
I don't think nobody wasjealous of the attention that he
got.
No, not at all.
And usually my parents madesure that he participated, like
at birthday parties.
He was always there, you know,like uh sort of thing and doing
(11:26):
his own thing yeah, we have oneof those two doing their own
thing oh yeah, I love it.
Speaker 3 (11:34):
I love it.
Oh, and what, um?
When you put the book together,who did you first share it with
and what were their thoughtsabout that?
Speaker 2 (11:44):
Well, probably my sisters, because they're in it.
I had to make sure that theywere okay.
Well, they were okay with whatI was doing.
Um, probably the.
You know, it was a real familything on that personal level.
Then I found this wonderful,because I had no idea what it
was doing as far as editing andall that sort of thing, and I
(12:09):
found this really cool companythat they help self-publishers
of nonfiction so a memoir fallsinto that category and they
provide all of the differentservices that you might need,
(12:29):
all sort of under one roof.
So I thought, well, that worksgreat for me, because I don't
know what I need.
It's like when I had finishedthe draft and I thought, okay,
it's done.
And when, you know, I handed itoff to them and they went, nope
, there's lots we can do to fixthis.
I went, oh, okay, it needsfixed.
(12:49):
And they did.
They took it from being a goodbook to a really really good
book.
Yeah, I know, and they're awonderful company.
They're called Book Launchers,okay, and they are an American
company, although, it'sinteresting, the lady who runs
it, she's Canadian.
So I thought, okay, we've got aconnection here, a connection
(13:12):
absolutely.
Speaker 3 (13:14):
Yep, wow.
And what about Michael?
Is he still?
He's still around, does, has he?
Speaker 2 (13:21):
seen.
No, he passed away.
He passed away in 21.
Speaker 3 (13:26):
Okay and had.
Did the book come after thatthen?
Speaker 2 (13:30):
Or okay, that's why we were clearing the house out
to sell, my father had, in hiswill he my mother had passed
away in 2005.
Dad died in 2009 and in hiswill, he wanted us to, you know,
uh, a possession of the housewith the stipulation that we had
(13:51):
to have michael stay livingthere, that we couldn't sell it,
that you know, uh, that we hadto and we had to look after him.
So, uh, that's what we did.
Two of my sisters moved intothe house and were physically
there looking after him, and Iwasn't far away, about 30
minutes away from where he lives.
(14:12):
That's great, that's, yeah, sothat's what we did.
Speaker 3 (14:17):
That's amazing.
And what did your sisters thinkof the book?
Speaker 2 (14:21):
Interesting reactions .
The one thinks it's fantasticand she actually helped me.
We went to the Geneva AutismSymposium last November with the
book and she actually came withme and helped me promote it.
And you know the other sister,who's my sensitive sister she
(14:46):
was one of the ones who actuallylived with him and did most of
the teaching him a lot of thingsthat he needed to learn to be
there by himself.
I think she found it hard toread.
It just brought back so manymemories for her.
She actually found it a littledistressing, I think.
(15:07):
But she's totally in support ofit.
And and the youngest sister too, you know like yeah, so oh, I
love that.
Speaker 3 (15:14):
I love that when you went to the Geneva conference
was Rachel Barcelona there.
Did you meet her or see her byany chance?
Speaker 2 (15:26):
There was quite a few really well-known speakers.
Temple Grandin was there.
I did get to meet her and shegot a copy of the book.
I love it.
The girl from the Love on theSpectrum show.
Speaker 3 (15:44):
Danny, yeah, there's so many right.
Speaker 2 (15:50):
David was her boyfriend.
He was there, oh yeah.
Speaker 3 (15:54):
She's so sweet, isn't she?
I haven't had a chance to meether.
Speaker 2 (16:01):
She's a funny soul, like she's just, you know, I I
mean, uh, she, she was talkingto me and all of a sudden you're
wandering off.
Okay, because I know, I knowwhat that is.
So I'm, I'm fine with that.
Yeah, I thought it was kind offunny, but yeah, it was a very
(16:23):
interesting conference.
There were lots of interestingpeople who also had booths and
different products.
They had some new PECS programsand all kinds of different
interesting things that they hadto contribute.
(16:43):
I I did enjoy it very much.
That's wonderful.
Speaker 3 (16:47):
Yeah, love a good conference.
Oh, I love that.
What's in store in the future?
Anything you're going to beworking on or going to be keep
going to conferences andpodcasts?
Uh, there's nothing.
Speaker 2 (17:01):
Yeah, I've got another podcast.
Uh, this one that'll be comingout in july I've done already.
Then there's um.
I've already done autism live.
You probably know she's.
Speaker 3 (17:15):
She's an awesome, awesome lady is that how we
connected, I wonder?
I think it was actually justthrough Shannon.
Shannon and I are good friends,okay.
Speaker 2 (17:27):
I did that podcast.
It came out during April duringAutism Month.
Yeah, in fact, I got to be acouple of days before temple
grand, like yeah, I gotcelebrity status I think you
know that's on there.
If anybody wants to go watch it, it's.
(17:51):
It's an interesting little talkwe had um, because we decided
that she calls herself a ponyright, a parent of a
neurodivergent individual.
Speaker 3 (18:02):
Yeah.
Speaker 2 (18:02):
So I said I guess I'm a grand pony.
Speaker 3 (18:08):
Oh, that's great.
Oh, and how is it being agrandma and everything?
Is it wonderful?
Speaker 2 (18:15):
Oh yeah, oh, absolutely, absolutely.
It really is funny it's whatpeople say about that.
You have all the benefits, likeall the fun stuff, and you know
, and once there's some work todo or cleaning up after
everybody, all right, well bye,oh and live here, uh, here in.
Canada, where I live, I'm likesteps to a beach, a really nice
(18:43):
beach, and during the summerthey have an arcade and all
kinds of.
So the kids come up and hangout with Nana, like Nana's got a
cool house, so that's, that's afun thing and they're're
they're relaxed when they'rehere with me because I I totally
(19:04):
accept them the way they are.
Um, they both have their littlepeculiarities too, you know,
and I'm like, yeah, okay, um,whatever, like the uh, my
granddaughter they're both 15now.
My granddaughter, she's thequiet one, you know, and very
(19:25):
sort of careful about what shesays and when she says it.
And you know, my grandson isthe chatty one he is.
It's, it's really interesting,um.
So now I don't have anythingimmediate coming up, though I do
have one more podcast to dowith, uh, keegan uh, I can't
(19:49):
remember his name now because Ibooked this one a long time ago
and he can't do it till August.
Oh yeah, I don't remember whatI'm doing.
Speaker 3 (20:01):
Oh, that's so nice.
It's nice to chat with you andget to know you more.
What is one message?
Speaker 2 (20:14):
you hope people read the book might get from it.
Um, mainly that if there'ssomebody who doesn't have a lot
of contact with autisticchildren or adults to be, if
they, when they see it, I knowwhat that is and just be a
little more accepting of thatsituation.
That was one of the messages Ihope that type of person who's
(20:46):
reading it, who doesn't reallyknow much about autism, and then
for anybody who does, it's sortof a little history for them as
to how we got to where we're at, and the ones who are working
in the field and working in theagencies and social workers and
(21:08):
all of them, well, a littletakeaway that, hey, you're
appreciated.
You know what you do isimportant, really important,
what you do is important, reallyimportant.
And that, as parents, likeanything you can do to help your
children's teachers and workers, do it, do whatever you can
(21:30):
Offer yourself, say listen, isthere anything I can do to help
you?
And just telling them, justsaying listen, I'm so glad
you're there, part of the day.
It makes my day easier kind ofthing, absolutely For sure.
So that's sort of what I had inmind as I was writing it.
Speaker 3 (21:52):
Yeah, do you have a website we can go to to find the
book?
Speaker 2 (21:57):
Yes, it's called my guided pen, so www, my guided
pen and um.
So there's a bit about the bookand you can order it from there
.
It's available on Amazon Canadaas well as regular Amazon,
(22:23):
barnes and Noble in the StatesIndigo Chapters in Canada.
Speaker 3 (22:29):
Is it com?
I didn't even think about that.
I don't know if Canadiancanadian websites have any other
, you know?
Speaker 2 (22:36):
different.
Well, like amazon is dot ca.
Speaker 3 (22:40):
Yeah, I thought so I thought it was a little bit
canadian side of things.
Yeah, okay, great.
Well, that's wonderful to knowfor people and, um, the title of
the book is the Alien Savant.
Speaker 2 (22:53):
Yep, oops, let me show that, yeah, show us that
real quick.
There we go.
And maybe show us some of thepictures, and that's one of
Michael's drawings on the fronthere.
So there's all his pictures andillustrations are all through
here, all sorts of ones that hedid and describing what he was
trying to describe to us.
(23:13):
As I said, that's how he usedto communicate, because he was
non-verbal and they did try toteach him to talk because, uh
again, deaf children were notallowed to do sign language.
Speaker 3 (23:28):
oh, I was going to ask you about sign language, but
he couldn't even do signlanguage.
Speaker 2 (23:33):
It wasn't permitted.
They wanted all the deafcommunity to learn to speak, and
again it was forced.
You can't do that.
So when sign language wasfinally introduced in the 70s
(23:59):
and allowed, they started toteach him to do some sign
language.
Now the problem with Michael.
This is where the autism got inthe way.
He wouldn't maintain eyecontact because he didn't like
it, so he would do real simplesigns that were a concrete,
meaning that that was somethingthat you could visually show him
.
This is the sign for milk, orthis is you know, this is the
(24:19):
sign for dog.
Um, so he, he learned those ones, but he couldn't sign a
conversation.
Yeah, um so he could, he could,just just so.
He would use signs and his owngestures, his own made up signs,
and then his drawings.
If he wanted something from us,he would usually bring it to us
(24:43):
as a drawing and he would drawin like a cartoon fashion where
each little square would and hewould show you this is how it's
going to start and this is whatI wanted to end up.
And or he would cut picturesout of magazines if he wanted a
particular thing.
He would, um, he would show itto you, bring you a picture and
(25:03):
said this is I want this, and hewould tell me he wants money
yep, I agree, real quick um, buthe was.
He was able to because dadencouraged it for him to go out,
as as when he was older, whenhe was old enough, uh, to go out
with his own money and and goout and buy the things he wanted
(25:26):
to buy, um, yeah.
So he got in trouble, though,though, at one of our dollar
stores.
He loved the dollar storebecause he loved gadgets and all
that you know, there's so manyneat things to look at and but
he had this horrible habit ofrearranging all their shelves,
and because he had to haveeverything, each thing had to be
(25:49):
straight, facing the right way,all fold up, so you know.
And they asked him one day toleave, and he wouldn't leave, so
they had to call the police,and it was kind of sad because
the policeman realized thatsomething was wrong with Michael
, so he followed him home, andthat's when he said, you know,
(26:14):
told my sisters, hey, you know,like, uh, he can't go back in
there cause he, you know, hewon't behave himself.
And I'm like, okay, yeah.
Speaker 3 (26:27):
And what?
Speaker 2 (26:28):
was he doing.
Speaker 3 (26:28):
Come on, let him, let him do it.
Speaker 2 (26:32):
Apparently.
Apparently, we found outafterwards that a couple of the
employees complained to themanager of the store about him
arranging the shelves and hesays what?
You're mad at him because he'sdoing your job.
Speaker 1 (26:50):
Really.
Speaker 3 (26:51):
Yeah.
Speaker 2 (26:53):
But this is just it you could take, could take,
obviously, that's a great talent.
If you do want your stock, yourshelf stocked, you know, and
you can make them understandthat's what you want.
Hey, he's happy for hours doingthat.
But this is what I mean about.
It's just about being acceptinginstead of fighting against it.
(27:16):
You know, uh, because you'reyou're not gonna win, uh,
because because uh, a lot of thetime they can't help it, that
they, they can't stop themselves.
You know it's yeah and okay.
So make it work for you, yeah,or make sure that they know
there's a certain time they'reallowed to do that and and
(27:38):
certain time they're not.
Speaker 3 (27:39):
You know so oh my gosh, it is so true too, oh yeah
days of our lives.
Oh, it's been so great to catchup with you, janet, and I'm so
thankful that you worked on thisproject and put it forth to the
(28:01):
community and, you know,allowed us all to kind of take a
glimpse of those things andwhat an important also the
history.
I think that's a reallyimportant part that probably a
lot of books don't look at, that, don't shine a light on and
highlight that part so that wecan really see the contrast of
(28:22):
how far we've come and and alsoknow how much work needs to be
done all around the world.
In some of these other placeswhere you know the, the work is
just beginning.
So, yeah, true, true, yeah.
Thank you so so much for beinghere and I hope that we can stay
in touch.
Speaker 2 (28:41):
I'm sure we will, Sarah.
You can always email me withanything interesting you think I
need to know.
Speaker 3 (28:47):
Good, good Same here.
I appreciate it.
I really will.
Yeah, thank you so much.
This has been a greatconversation and I really look
forward to staying in touch.
Okay, appreciate it.
I really will.
Yeah, thank you so much.
This has been a greatconversation and I really look
forward to staying in touch.
Speaker 2 (28:57):
Okay, dear.
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