Transcriber: Ilze Garda Reviewer: Elisabeth Buffard
I'm going to start with a little bit of audience participation.
So I'd like to ask you to close your eyes,
(deep breath)
take a deep breath.
Just relax there for a couple of moments
as you think about what images are conjured
by the word
What does the concept
Maybe it's love, warmth, caring.
Maybe it's sad, lonely or non-existent.
Now I'd like for you to think about a person with autism.
Maybe a friend or relative has an autistic child.
What do they look like? How do they behave?
Do they look at you?
And now, lastly, I'd like for you to think about a mother with autism.
What?! What?
You might be thinking, "I have no idea what that looks like."
Or maybe you're thinking, "Wait, what? Can a mother have autism?"
Open your eyes.
The answer is
But we don't really think about moms and dads having autism, do we?
We usually think about an awkward child with poor social skills
who doesn't use eye contact or maybe doesn't even speak.
But what if I told you that child with autism
is going to grow up to be an adult with autism?
And what if I told you that adult with autism
can make a baby?
(Laughter)
This is the story about a woman with an autism spectrum disorder
who also happens to be my mom.
This is the story of the invisibility of autism.
For as long as I can remember,
my mom has called me Fred and my big sister Leroy,
and we called her Moppy.
We always knew she was a little bit different.
I used to think we shared this magical, mysterious secret
that no one else could ever understand,
and then I would think, "Oh, who would want to..."
This slide clearly demonstrates two things.
Number one, my impeccable fashion sense.
And number two, my uncanny impression of Rodney Dangerfield.
(Laughter)
So to answer the question that is sure to be on most of your minds:
What was it like growing up with a mom like that?
Well, Moppy provided us with basic needs like food, shelter and clothing.
She performed regularly scheduled activities
and household chores like taking out the garbage,
driving the carpool,
attended out school plays and concerts, and dance recitals.
She was extremely attentive to our pets,
always greeting them with hugs and kisses, and loving,
but why was she so different?
And, unfortunately the list of things she didn't do while raising us
goes on and on.
She didn't cook for us.
She didn't clean the house, didn't help us with our homework.
She didn't really teach us about the birds and the bees,
she didn't teach us how to wear make-up.
But, luckily, our dad was there to fill in a lot of those gaps,
quite frequently playing a role of both father and mother.
Moppy was much more comfortable being affectionate with us
when we were very small children.
And as we grew up, she required hours upon hours of me-time
during which she would obsessively watch her TV shows and read her magazines,
which to me was unbearably painful
because I felt like I was being rejected by my own mother.
As a child, I was anxious and depressed,
and I needed a mommy to make it all better.
And what did I have?
A woman I called Moppy
who couldn't relate to me, didn't know how to support me,
and her distance toward me made me wonder
if I was just some selfish, ungrateful child
who didn't know how to love her mommy the right way.
I mean, was it all in my head?
Was I doing something wrong?
Was I a bad daughter? Why doesn't she like me?
Is it my fault?
I felt isolated and defective.
I felt invisible.
And it seemed like Leroy didn't need our mom the way I needed her.
I was sure my pretty and talented big sister
was going to grow up untarnished by our weird mom.
She learned how to cook, she went on dates with boys,
she learned how to dress in trendy clothes,
her life was full of colour and shine,
maybe it was all that awkwardness... (Laughter)
Meanwhile, my life was dull and grey.
I mean, how could Moppy teach me how to grow up,
when it seems she never grew up herself?
Moppy was destined to slip under the radar,
because she seemed to develop normally through about age 5 or 6,
when, as my grandma puts it, she just simply stopped progressing.
She started showing signs of academic and social, and developmental delays,
but she was just labelled a problem child,
restless, hyperactive, what's wrong with her?
Eventually, she did graduate high school,
but it wasn't without extreme difficulty,
because she struggled academically
and she never received the kind of support or services
that she needed or deserved.
She was always just passed off as lazy.
And she was bullied,
and she was teased, and she was harassed,
and she was tormented so severely
that she had to transfer schools and repeat the grade.
And it's not like it all got better when she became an adult.
She continued to struggle, she continued to feel different,
she continued to be invisible.
Then, in 2007, on a five-page memo,
Moppy was diagnosed with an autism spectrum disorder
at the age of 58.
Finally. Finally! A diagnosis, a label for my Moppy.
But now what?
It didn't change her,
didn't change who she is, didn't change how she is.
But actually it changed her life for the better.
And I believe
the greatest and most profound results of her diagnosis
is watching her learn to accept herself and accept that it's not her fault.
When she's asked what's it like to be her and to have an autism spectrum disorder,
she says, "Well, it's the reason why I always felt like I don't get it."
She often says since her diagnosis she's relieved, she can be herself,
she doesn't have to hide anymore.
She's learned to become a self-advocate,
and I dare say she's blossomed into a role model.
If the rate of incidents of autism is one in 68 children,
how many adults with an autism spectrum disorder
are undiagnosed or misdiagnosed?
And how many adults with autism have children of their own?
And yet even with the power of that formal diagnosis
there still remain precious few resources for adults with disabilities,
let alone any kind of coaching or best practice techniques
for how to be a parent when you have autism.
But through awareness and acceptance,
we will progress,
we will continue to advocate for services and diagnosis for adults,
and we must remember,
to train our communities and ourselves
to remember that autism doesn't become invisible after childhood.
Recently, I had a conversation with Moppy about this idea of invisibility,
and I said, "Didn't you feel invisible as a child?"
She said, "No. No! Actually it was just the opposite,
I felt like I stood out like a sore thumb, nobody was like me, I was so different,
I wished I was invisible.
But now... Now I'm out and proud, and I want the whole world to know,
no holding back, this is me!"
This is what acceptance looks like.
This is autism.
Thank you.
(Applause)