The story of Fred and Leroy — my mom has autism | Wendy Hamilton | TEDxOmaha


Translator: 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 wordmother. What does the conceptmothermean to you? 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 isyes. This is my mom. 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,
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)

29 thoughts on “The story of Fred and Leroy — my mom has autism | Wendy Hamilton | TEDxOmaha

  1. I think it very important that you stress to people that your Mother's poor parenting result was about Depression NOT Autism.  I am an Autistic Mom and did a fabulous job of raising my girls.  I did not suffer from abuse as a child and was able to come out without depression.  Depression is what huts so much.  Many Autistic adults are so steeped in it that they have no way out.  

  2. I won't to be a mom but im more that im going to be seen as as a bad mom naw becouse thay a sum im not going to look after my baby's needs 🙁 when atchalie im more likely to be whot ting more to do with thaer life's. Im hi lie likely to seem more like a biz body mom

  3. Thanks for speaking out. There is so much advocacy for autism, and so little is said for those who have suffered from the effects of autism in a parent or spouse. You are a pioneer.

  4. I'm a parent, with Autism, and amongst all the videos for parents of autistic children, this seems to be the only one that discusses autistic parenting. I have a teenager and find it very difficult, as a single mom, on the spectrum. I would love to see some videos aimed at autistic parents, because we could use the help and there doesn't seem to be any. I'd love to hear a talk, by Wendy's mom, on what it was like to have autism and a teenage daughter at the same time. It's not easy.

  5. Describing something as normal but then putting normal in quotation marks is extremely idiotic. If you don't believe in something then don't describe something as the thing you don't believe in. I reckon people who claim not to believe in normality are in denial.

  6. As an Autistic mum of 4 I found this pretty depressing- except that fact that Moppy (eventually) got some validation. I don't believe I miss out any crucial aspects of parenting, personally- and I think I have a closer relationship with my kids than most mums I know. I'm not 'touchy-feely' in general, but I am with my kids. They talk to me about things that I'd never have talked to my parents about… They like the fact that I'm up on the stuff they're into- there doesn't seem to be a huge generation gap or anything. Yes, common co-morbids of Autism such as anxiety and depression can be a problem- but non-Autistic people get depression too.

  7. My dad is autistic, and got diagnosed at age 67. There have been times throughout my childhood when I felt like he didn't care about me. Even today, he rarely looks me in the eye, and he does not like to touch people. I try not to take it personally, but it still hurts. It's not his fault. Due to his autism, and various other mental health issues, he was just unable to be a parent to my sibling and I. His mind was always somewhere else, and he always said the most random things. He's never really behaved like an adult.

    My parents have been married for 44 years, but it's been a long, troubled, rocky, fucked up relationship. He gets routinely bullied by my mom to get his life together, pressuring him to be the breadwinner. In the past, she has treated his lack of employment as being a lousy husband, plus she threatened to divorce him many times. Instead of learning about the way his mind works, and accepting him how he is, she treated him like he was just being stupid, that he should just snap out of it and behave like an adult. Their relationship was at times quite chaotic, and things are still shaky to this day.

    Growing up in this environment really sucked ass, and I'm glad that my childhood is over. Conversations with my mom & pops are kept to the bare minimum. We don't have many family get-togethers. I can't stand more than a few hours per year with my mother, and my dad is just off in the world in his head. That's why I've spent so much time building my chosen family from the friends who treat me better than my biological family!

  8. I have a son with Autism . i also have Autism so raising my son and trying to understand his disability i got to understand myself better, even though we are both high functioning. It sucked growing up at a time when this was not well known for me being treated more like a outcast and trying to find acceptance was hard and still is . lucky my son has 2 parents that work really hard too help him.

  9. My Mother is high functioning Aspergers but it has taken 40 years for her 4 children to finally figure this out. We love her and know that she tries very hard to do what she is supposed to to please her husband which extends to us. Unfortunately, her disorder has quietly sabotaged my life over and over. When family situations arise, she has no intuition or good sense, she follows strange people. My Sister is very much like the speaker with the same issues. She has never recovered from feeling unloved. I bonded emotionally to my Father..it's been very very difficult and would have been impossible, but she has a wonderful husband that is a bit Angelic. He has been there for me…us.I just wrote my Mother a letter this morning and for better or worse, let her know that consensus is amongst her children, that she is on this Aspergers scale and can take this knowledge and somehow accept it and get help. She can take a class in reading facial expressions and learn to spot liars, possibly begin to understand from our perspective that indeed, we have had plenty of issues and they are all related to this…Pray she does not react with stubbornness or jealousy…threatened by losing control. Threatened by facing her short comings…She has very much enjoyed using the BP2 diagnosis I have completely balanced without alcohol, against me and as a tool to harm my children. It's really strange…not ok…we were all victims of her strangeness and we are all still affected. Praying awareness can bring understanding and healing to all of us…By the way, she has told me many times that she got the "First batch of Polio vaccinations " and that it was tainted. She never discussed how and what this "tainting" was or health issues related but I often wonder if this odd bit of info isn't a clue into what gave me Robo Mom

  10. I am a Mum with espies and I am having struggles everyday more so now that my daughter is getting older and is at an age where she can talk back

  11. Ur video really helped me 👏🏻👏🏻👏🏻👏🏻 coz I always feel like no one is on my side not even my parents and husband also at times I feel like because of my esperjues I can not parent be a parent

  12. Made me sad….I'm the MOPEY. I didn't know my daughter was going through this while I was melting down.

  13. Thank you. I’m having problems with my eldest daughter 30 accepting me I’m 60 and struggled so much, I know she suffered but refuses to engage with me in the healing process and it hurts so much.

  14. I’m a mom diagnosed with ASD. I have 3 small children and an extremely supportive husband. It only became glaringly obvious I was autistic after having kids and having my world and routines turned into chaos and was having meltdown after meltdown. Then the burn outs. I was never very social so it was assumed I was just shy. If it wasn’t for my husband I’d be lost because it’s true, there really isn’t any sort of support or guidance for those of us trying to raise children as autistic parents. I can relate to a lot of what she said. When my kids were younger, babies, toddlers, it was easier to cuddle them. Now I’m having a hard time connecting with my oldest, 7 year old. I find her complicated and hard to understand. And now it’s starting with my 4 year old son. My 3 year is just like me. I suspect she is also on the spectrum which is probably why we get each other. I am trying my best. My husband is good about explaining to them that mommy is a little different and sometimes needs silent alone time. But it is very frustrating when out of nowhere over something so ridiculous (like arriving at the movies only to find it’s sold out) I start to panic and cry in public unable to stop and now I’m embarrassed and need to leave. My biggest fear is that my daughter grows up thinking I don’t love her or something. I wonder if she feels the same way this woman did as a child and if so, what can I do to reverse that while she is still little?

  15. This video as well as the comments makes me afraid that there will be a law passed forbidding autistic people to have children

  16. My mom asked me why I don’t want children. I told her “the worst thing I could do to another human being is give them my genes.”
    Since then she has never mentioned me hypothetically having children of my own.

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