Tom Iland: Shattering Autism Myths – From Diagnosis to Diverse Advocacy and Empowerment

Welcome to Why Not Me the World? Podcast, hosted by
Tony Mantor, broadcasting from Music City, USA, Nashville, Tennessee. Join
us as our guests tell us their stories. Some will
make you laugh, some will make you cry. Real life
people who will inspire and show that you are not
alone in this world. Hopefully you gain more awareness, acceptance,
and a better understanding for autism around the world. Hi,
I'm Tony Mantor. Welcome to whind Not Me the World.
Today's guest is Tom Island. He's a coach, author and
a postmasters, a credited speaker. There's only ninety three of
them in the world, and he's the only one this autistic.
He's got a great story to tell us. I'm happy
to have him join us today. So thanks for coming on.
Appreciate you having me.
Oh, it's my pleasure. I understand that you was diagnosed
autistic in your early teens? Is that correct?
Thirteen? Officially? That's when I was officially diagnosed or told
about my diagnosis at least.
Okay, what were some of the things that led up
to getting your diagnosis from a young age?
I showed the signs as far as that lying up
my toys. There was a time I went six months
without talking right. And my aunt that's my mother's sister,
was the autism specialist for the state of Illinois. Oh,
And I was on the spectrum. And I didn't fit
the criteria back in the mid eighties, which you had
to have an intellectual disability or mental retardation to fit
the diagnosis criteria. I did not and I do not
have such a diagnosis. So I was not officially diagnosed
in the mid eighties. But in the mid nineties the
criteria changed. You don't have to have an intellectual disability
to have the social behavior, communication, sensory difficulties that come
with autism. Okay, the story I like to tell in
my keynotes and other presentations. I was about twelve or
thirteen years old, my younger brother and sister. They were
getting calls from their friends looking to hang out after
school on the weekends. My mom one day, Mom, why
does the phone ever ring for me?
Sure?
And that's when she and my dad proceed to set
me down and explain that I had fit the criteria
the diagnosis, if you will, of autism back in the mid.
Nineties, and that was when you hit your teens. Is
that correct?
That's when I was thirteen.
Okay, after your parents explained to you that you are
indeed autistic, what was going through your mind and what
was your emotions at the time.
Well, first I thought, well, well, I don't want to
have autism. I want to be like everybody else. Or
I thought that being different was bat or that my
brain was broken. Right, I went into my room. I
must have cried for a good hour, and I thought
to myself, I was a big fan and still I'm
a big.
Fan of Batman.
Okay, all right, I thought to myself, what would Batman
do in this situation? Sure he would face the darkness,
he would find a way use his mind to overcome
the matter at hand and do what needed to be
done to be a better person, maybe even improve the
world or like the city for the better.
Right.
So I'm from my room and I'm like, okay, mom,
with this watches and thing all about Sure.
Now, this was your early teens, so before that, there
must have been some signs or signals that everything wasn't
just the way that they had hoped. So was there
anything that you can remember in your early years that
might have led to the eventual diagnosis. In your early teens, I.
Found myself quoting movies and television a lot. We call
it video talk in my family when I said something
I heard in a movie or TV show in general conversation,
even if it doesn't necessarily do with what was being discussed.
I also would memorize these movies. I would watch them sensively,
rewind them over and over. My favorite part still laugh
just hard at the funny bits, and have those movies memorized,
work for word, even acting them out okay, scripting if
you will, or putting, similar to the video talk, putting
the situation that I recall in the movie and the
TV show, acting it out right then and there. Certain
items of clothing I know were also quite intolerable for me,
like itchy wooly sweaters. I couldn't really have those loud
fireworks shows. There was like a war zone. We had
very sensitive still in a way have very sensitive ears
to where I can't take high magnitude sound and huge quantities.
So what about concerts? Is that something that's gotten better
for you or is that still an issue?
I tend to stay out my distance from the speakers
whenever possible, If it's a closed room, I might ask
to excuse myself to the men's room after a couple
of minutes, But for the most part, I'm more tolerant
of it than I was when I was a kid.
My tastes and preferences have changed over time, as well
as my special interests. When I was younger, I could
talk about Star Wars ad nauseum. Then I realized other
people didn't want to talk about that. Plus add an
interest in having a girlfriend and having friends for that matter,
so I had to take a genuine, legitimate interest in
what other people had to say.
Okay.
I started reading around my early thirties significant books about
self help personal relationships. I lived within walking distance of
a library, and after a major breakup with a young
woman with autism, I decided to read How to Win
Friends and Influence People by Dale Carnegie, The Seven Habits
of Highly Affected People by Stephen Covey, Andre from Mars,
Women from Venus by John Gray, Awaken The Giant Within
by Tony Robbins. All these books that were like a
switch going off with me. I think I should start
telling my story of struggle. I think I should start
showing people that people with autism can do something with
their lives and that we shouldn't be underestimated or overlooked.
Absolutely, So that was a little later in life. Now,
what was it like during your teen years through school?
Did you go to public school, private school? What was
that like for you?
I was in general education all of my years up
until tenth grade because freshman year in high school I
had gotten into a physical altercation and my social skills
were significantly underdeveloped, even though my academics were off the chart.
So I did go to a private school in tenth
eleventh grade that was specialized for people with autism and
social skills, and I spent two years there tenth and
eleventh grade having a live gaps bridged like body language,
nonverbal communication, abstract concepts and reading like sarcasm, irony, idioms, euphemisms, innuendos,
figures of speech that I really hadn't had any personalized,
real life instruction on until tenth and eleventh grade. And then
I proceeded to finish up at the public high school
I started in for twelfth grade, went to community college
after that, and a four year university after that.
Okay, that's great, So now you've over the years gathered
the knowledge of learning to read people and understand them
a little bit more. Now that you went from high
school to college, how was that transition for you.
I was definitely more aware of how I was conducting
myself and how much my body speaks and vocal variety,
eye contact, my proximity to people, all these things that
I hadn't really thought about that we sometimes either take
for granted or really learn just through experience or through instinct.
Put two and two together and connect the dots as
to what is and what is not socially appropriate. Okay,
once it was brought to my attention and it finally
started to make sense to me, did I be more
mindful of it and conduct myself accordingly?
Sure?
It. Actually I think maybe look more mature than my
senior year peers in high school. I seem to be
a little bit more evolved socially than most of my
peers had after I had received that instruction.
Okay, you brought up something that I think is very
important to a lot of autistic people, and that's proximity.
Some have problem with touching, hugging, et cetera. Did you
have a problem with that in your early years or
did you evolve to where you can accept it or
how does that enter into your life today.
When I was younger, certain touch was intolerable. But as
I've seen more and more the power of like a
hug or a good handshake, what those actions convey, and
the kind of chemicals like oxytocin, I think it is
that the trust formone that gets released during an embrace.
Also that I've been complemented on the hugs I give.
It's just right, not too tight, not too loose. But
people feel safe, or people have told me they feel
safe in my arms. Right, I realized the power of
that particular embrace, and I take that with me. So
I am comfortable with touch, but I'm also mindful of
what kind of touch is not appropriate. And I guess
a lot of people with autism could use more instruction
on that particular concept of boundaries.
Absolutely. That's why it's called the autistic spectrum, because there
are so many people in different areas of the spectrum
that can do different things that others can't do. That's
why we need more people to understand what autistic people
go through, because that way they can see, for example,
there's a difference between having a tantrum and a meltdown.
If we can get that out there where people can
see the differences, and hopefully that can help and things
can get better because of the understanding.
And I often explain the difference between a tantrument and
meltdown when I train police officers about autism. I have
a long standing partnership with the LAPD Mental Evaluation Unit,
and I discuss the importance of knowing the differences between
tantrum and meltdown. Here is a look or sound similar.
There's likely something going on beneath the surface. Yeah, when
it comes from the meltdown. And yet society we learn
to see something, say something society, and the meltdown happens
like gold.
The police, right right, Yeah, that brings me into my
next question. You've gone through high school, You've you'vevolved into college.
How you're into the real world of real life and
real working. You just mentioned that you work with the
police for helping them understand. What do you do other
things as well? Right?
I was a certified public accountant. I went to college
for that thinking that it would make me a lot
of money if I knew how to handle money. Sure,
but I realized after going to college, passing the CPA,
working in several corporate jobs. That's a lot more than
I thought it was. And I was in over my
head and really didn't enjoy the work at all and
decided eight and a half years ago to just walk
away from it. And now I do public speaking, I
do professional keynotes. I have human potential coaching. I'll meet
with clients personally to see what's at the root of
their matters or what they can do to make the
world of our place. I also do diversity, equity and
inclusion consulting for organizations that want to hire more people
on the spectrum or make the effort to put a
dent in those unemployment numbers.
Yeah, because they're huge. Yes, you know, I think it's
what around seventy percent, maybe I'll say more like eighty
or ninety that's that high. Yeah, Yeah, unemployed or underemployed.
They're not working or they're not working.
Enough to make ends meets right.
So when you do these consultations and you meet with people,
have you had situations where someone came to you and
your initial thought was this is going to be tough.
I don't know what I'm gonna be able to do
for this person, and then all of a sudden things
just kind of kicked in and it became a success
story for you.
I find that by telling my own stories or finding
wherever I can relate from personal experience has helped a lot. Like,
for instance, I have a client who recently got a
job in a movie theater, and I too, have worked
in a movie theater. So as he's describing a situation
or something that came up, It's like, Oh, yeah, that
happened to be when I worked in a movie theater too,
So I'm able to relate on that level. If there's
something where I am not able to relate or I
have no past experience for a given situation, I would
remind that person, so why are you doing this or
pursuing this? What's the underlying reason that you want this
to happen? So because we can focus on the why,
right then how should reveal or have a better chance
of revealing itself.
Okay, how long have you been doing the consultations and
the one on ones and working with the police for
bringing more exposure to the needs of the autistic community.
I was doing some police work on the side while
I was doing accounting. So I would say for the
last fifteen minimum or so years, I've been working with
police officers. Every now and then, I might give a
speech at like a high school or a college or
a random group of students about my life with autism.
But for the past eight and a half years, it
has been my full time, bread and butter way of
making my living and my impact on the world.
And how do you find the reception to those that
don't understand anything about autism? They just know it's a word,
they don't know what is behind it. How do you
find the reception of those that you're trying to get
across your message?
And it's actually something I've been working on continuously and
sort of what I like to go or call going
beyond the pond, because autism, you got a bunch of
people in the world, A small percentage they're in this
small body of water, swimming around, living their lives. Beyond
that pond is a lake, a bigger body of water,
more interesting creatures, interactions, and this could be people with
mental health difficulties, particularly with COVID, lots of people are
experiencing mental health difficulties. So I've kind of jumped or
opt over gone beyond the pond into that lake. Beyond
the lake is a sea, and even be there body
of water, even more interesting creatures and other interactions. They've
got stuff going on in their lives, maybe entrepreneurs or
people with past corporate experience that want to have their
own business. I can speak to that, So I'm appealing
to those individuals as well. Beyond the sea is an ocean,
uncharged water, places people have never been before, any huge creatures,
sometimes even unknown, And that is what's on the horizon,
somewhere to be and really show how I can stand
out and all my messages, my journey can apply to
just about anyone.
Right, So have you found when you go into like say,
a police station to talk about it, or you go
into a workplace to talk about it. Because I was
talking with someone here about a month ago, and his
approach was for the workplace not to try and overwhelm them.
In order to hire autistic people, you have to make change.
They brought it out that if you already have this
in place, if you could subtly do this or subtly
do this, so that it didn't seem like they was
making any big open change in order to hire someone
this autistic, but yet it allowed them to see the
differences and then allow them to see that that person
could go to work there and ultimately become very efficient
at helping the company out. So is that kind of
your approach or how do you approach it when you
talk to potential employers or helping them?
I think it depends on the employer and what kind
of company they're working in, because when it comes to
hiring people on the auction, the spectrum, or any diagnosis
for that matter, there have to be what are called
reasonable accommodations. I can't move mountains just for one employee,
at least, I don't think most companies do right on
the same token. The more the individual can bring to
the table, say I do better when my directions are
in writing, or if you can please bear with me,
I may ask the same question multiple times, Please be
patient with me, it will eventually stick. Or I do
better in this particular environment, with this particular aspect. So
the more employees can give employers, police officers' allies, whomever
might be looking to help them, the better they can
do their job in assisting. So it works both ways.
Employers want to help lay out the accommodations, but the
employee has to be willing and able to say, here's
what I need. I think this can help me. Can
this work right? So it's basically a situation of compromise. Yes, yeah,
So have you found that it's working for you? Have
you found that you've been able to make some big leaps,
even if it's just small leaps, Because like they say,
you got to start out with baby steps and then
you start growing. Where would you compare your business in
helping the employee e and the employer find that compromise?
Is it still baby steps? Or are you to the
point of walking? Or have you started a slow jog
or you a full boat bore run. Now I feel
I can offer just about any organization the consultation or
the problem solving wherever you want to call it, as
to what is going on within that organization. And I
believe where there's a will, there's a way. I've right
one way and had several situations or clients that they
presented a problem to me. I suggested a solution, or
they in some ways found their own way. I brought
something to their attention, or as the process of folds,
they're like they have an Aha moment.
Right.
So I think as over the last eight and a
half years, I've really shown people that they have the
power to live their life. They want create the best
out of a not so good situation, get things done
in a way that hopefully everybody can benefit from.
Yeah. Yeah, that's great because when you get people, especially employees,
having that Aha moment, that means they're getting it. That
was the big thing, and it still is a big
thing that people just don't get it, you know, they
don't understand enough. And then sometimes they're stuck in the
old fashioned way or the old ways that they want
to do it, and they're not willing to compromise or
move a little bit to help someone else out. And
that's I think that's the big thing that we have
to The bridge we have to cross is the understanding.
Very much so. And there's a term augnitive flexibility. You know,
they say there's more than one way to skin a cat, right,
And a lot of times people on the autumnce spectrum
offer a perspective or an approach that no one would
have otherwise thought of, right, and it actually can yield
to better results or better efficiency or better clients or
what have you. So there are a lot of unanswered
questions out there, and I think the answer lies in
the perspective of people in the to the spectrum. I
think there was one quote I heard in passing. It
was I miss what others catch, and I catch what
others miss.
Oh, that's interesting when.
It when it comes to the employee in the employment game,
if you will, when people are on the autism and
the spectrum are involved.
Yeah, that's that's a cool statement.
I miss what others catch, and I catch what others miss.
Yeah, yeah, that's that's that's good. Now you've been doing
this for several years. You've been successful in helping bridge
that gap. There's still a long ways to go, because,
like you said, I thought it was seventy percent, you're
saying it's eighty or ninety percent of underemployment or not employed.
What do you see changing or what can you help
change in the next let's say five years, they can
make that better.
I'd say over the next five years. What needs to
be focused on more? Even as people in the arts
and the spectrum get ready to leave high school make
that transition to adulthood, what have you we seem to
be focused on academics. How are they doing in math, English, science?
All these things that be good in school. Once you
get to the real world, it's the soft skills, the
interpersonal skills, the social skills that are going to get
you farther in life. And sadly that is a huge
struggle for people in the auto spectrum. So more assistance,
support and guidance are needed in the line of soft skills,
social skills, interpersonal skills, so that our young people are
people in the auto spectrum, what have you are relatable, likable, knowledgeable,
and are able to find and keep a relationship, a job,
something that they can grow with and be proud of
and make the world a better place with. So I
would definitely say those abstract soft skills are the main
focus or what I would like to see bettered over
the next five years and more.
Yeah, and along with that is housing. I've got a
friend here that in Nashville that has a company called
Our Place Nashville. They work with autism and special needs people,
trying to get them housing in the local area where
they can survive and get out there and do things.
And they told me that they're one of the only
places in the country that does that. They're not the
only one, but they're one of the few. So that
needs to be addressed too, because in order to get
what you're trying for, we have to have that. So
they don't have to take and wonder where they're going
to be living, if they're going to be.
Working, indeed, are they going to be living with their folks,
so maybe find someplace else to live, a group home
or something, and all these questions that we have, particularly
as they get ready for that transition to adulthood. That's
why I wrote my very first book, Come to Life,
Your Guide to Self Discovery to help answer those questions.
Instead of get a bunch of right, this helps us
find the answers for the best possible life for that person.
It's also been translated into Spanish.
Oh that's cool, So is that still available?
Still available? You can find it through my website. You
can get on Amazon.
Okay, if you would give people your website and how
they can contact you.
My website is come to lifecoaching dot com. Based on
the title of this book, and my philosophy is that
life doesn't come to you, it's up to you to
come to life. You have to be the one to
go out there and make things happen. See what's out
there for you. Maybe have some failures along the way,
if not, definitely have some failures along the way so
you can figure out what works and doesn't work for you.
You can also offer rather get My newest book, My
Glass is Full Stories of Putting Mental Health First, the
first book I've written that appeals to not just the
autism community, but those who might be struggling with mental
health matters, particularly post COVID.
Yeah. That's great. Yeah, because the last couple of months,
I've had several that I've interviewed that found out that
they both have ADHD and autism. And the interesting part
about it is is the ADHD will will pull them
one way, the autism will pull them the other way,
and they have to find a way to cope with
both of those, to come to the middle, to survive.
So I think what you're doing with those books, I
think that that kind of goes along with that as well,
because it gives some people something to think about to
try and hopefully better than lies.
Definitely, and also it gives people hope that there are
people out there who have struggled who have had trials,
tribulations and triumphs. And I feel that by laying my
guard down, saying where I messed up, what I learned
the hard way right, that betters people's lives. And I've
got another book on the horizon I'm writing with my fiance.
It's called they Said We couldn't, So We did. I
like that, how to make relationships work when the odds
are against you. So I'm on the autism spectrum. She's
not I'm a white man. She's a woman of color.
Okay.
I don't know if you believe in astrology or horoscopes,
but Sagittarius men cancer woman. Okay, how's that go? Yeah, yeah,
will be writing about.
I think that's great. I think what you're doing is great.
So now you're standing in front of one hundred people,
thousand people, whatever you do when you go for your
public speaking. Some of them are autistic. Some of them
are just finding out they're autistic. Some of them are
just finding out that they have kids that might be autistic.
Some of them are finding out again that, like you
just brought up, that this other thing is going on
other than just autism. What are you telling them?
I would refer to my speech then currently using to
hopefully get me to the Toastmasters International World Championship of
Public Speaking. The title of the speech is the Glass
is Full, based on this book here and in it,
I describe how there's a lot out there in the world.
In fact, we live in a world of never ending
information and sensations. Well, it may be nice to have
access to all of it, it may actually be harmful
to us physically, mentally and emotionally if left unchecked. So
I encourage my audience to ask themselves the important questions,
and I during the speech, I describe how how much
you can hold a given moment is like a glass
miss water represents information and sensations. If you allow yourself
assume this is full, promote to let informations that sensations
keep pouring into your glass. Eventually that glass is going
to fill up and overflow and make a mess.
Right.
So I would encourage families, particularly those with autism, to
have some kind of code word or phrase when to
say stop, I've had enough for me and my family.
It was the glass is full. I would say the
glass is full whenever I'd had enough and you all
have to back up. And shut up please.
Right.
So that's the theme I'm going for with my World
Champion speech, and it's my message to my peers and
I think the world really we all need to know
about our limits when they're about to be exceeded. And
if your glass must overflow, it should be with happiness, prosperity, love,
p happiness. Be mindful of what you're filling your glass
with and who's supporting you. And when is enough enough,
well you say the glass is full before that overflow,
the bad overflow. Absolutely, that is that's taking me about
forty years. It took me forty years to write this book,
and now I'm telling them my peers have that code word,
that phrase, be mindful of what you're taking in and
know when to say stop.
Right. You know, it might have taken you forty years
to write it, but the most important thing is that
you did right, yes, because that's part of getting your
message out there. That's part of getting the message for
the autistic community, so that people know that just because
they're labeled with that word autism doesn't mean they're labeled
with any other words of not being able to do something.
I think the world underestimates people on the autism spectrum
too much because they don't talk like we do. They
may have difficulty forming relationships like we do. They have
difficulty finding keeping a job like others do. That means
they're totally useless. They don't have anything to offer. But
really they have a lot to offer, and all too
often they're not put in a place where they can shine.
But they fail and they don't bounce back from their failures.
They've had so many rejections, terminations, failed instances in their
life they just quit. In some cases, they end their
lives prematurely. They've given up. Yeah, I'm here to say,
let's see if you can give it another shot. What
can you do differently that you didn't do last time
to improve and how can we make the world beter
placed in the process.
Yeah, that's the ultimate goal, is to find that happy
medium where everybody can coexist and get along and be
able to be creative and do the things that they
want to do. So just because someone has that idea
that they want to do something and they have that
label of autism, which in some people's eyes restricts them
and say they can't do it, that just means that
they have to get out there and just do what
you just said and not let the failures stop you.
Let the failures teach you so that you can grow
and evolve into something and show them that, hey, we're
very capable of doing this very much. So, yeah, I
like your message. I like what you have to say.
Is there anything that we've missed that you might want
to put out there that you think is important.
I think it's very important that your listeners or viewers
know that I am what's called a Toastmaster's International Accredited Speaker.
There are only ninety three people in the world who
have this designation. I'm the only one with autism to
accomplish this. It's someone who has mastered the art of
public speaking and applies to a particular trade or line
of work. And with autism being a social communication disorder
and public speaking basically being socializing and communicating the fact
that I was able to do this, I want to
encourage your listeners to imagine what kind of barriers they
can break, what kind of ceilings and stereotypes they can shatter,
what kind of obstacles they can overcome, and to lead
by example and Toastmaster's our motto is where leaders are
made right. I'm putting yourself in areas where you feel uncomfortable,
where you're not the expert in the room. That makes
us better people. As scary as it might be, you
do not have to know everything. It's okay to make
mistakes right. Find people that support you throughout that journey
will help you become a better person, and you may
even amaze yourself.
Yeah, it's it's learning to live outside of your comfort zone. Yes,
and that's very difficult, no matter whether you're neurotypical or
autistic or ADHD or anything that you want to say.
That's a tough thing to do, but it can be done.
It sure canon Ironically, as much as we want things
to be consistent, predictable and unchangeable, really the only consistent, predictable,
unchangeable part of our lives is cha. Right, you may
as well embrace it, learn to roll with it, see
how we can become better from it, rather than attempt
to fight it or resist it. Because if you're going
against what I feel might even be like the laws
of nature, you're going to be in over your head
pretty quickly. So see how you can adapt change any bol.
Yes, yes, I love it. Well, this has been great,
great conversation, great input, great thoughts. I appreciate you coming on.
Thank you very much and on my email address for
anybody interested in contacting me for a consultation or becoming
a coaching client. Tom at Thomasiland dot com and my
website again Come to Life Coaching dot com. You can
also contact me through that. There's a link there to
get my Come to Life book. It's available in Spanish
as well a ban A Labda and look for My
Glasses Full where ebooks and books are sold. The hard
copy is available through my publisher, book Baby. I recommend
going to book Baby for a hard copy of My
Glass Is Full. If you want the even book, you
can go to Amazon, Barnes, and Noble Lah all major
retailers for.
The e book. Absolutely, that's great.
Thank you Tony for having me.
It's been my pleasure. Thanks for taking the time out
of your busy schedule to listen to our show today.
We hope that you enjoyed it as much as we
enjoyed bringing it to you. If you know anyone they
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