If you’re interested, my talk about what I’ve learned from my son with autism has been posted online.
Transcript
Tim: I’d like you to think of a song, any song, the first one that pops in your head. Okay. No, I’m going to count to three. When I do, I want you to sing it with passion and commitment at the top of your lungs. Great, one, two, three, go. I’m not hearing commitment. I would like to thank you all for participating. I would like to thank you all, sibilance, sibilance, for participating in our performance arts simulation of TweetDeck. That’s not all we were participating in.
Kris DesJardins is a person with autism and she writes very interestingly. How does it feel to be autistic when you’re overstimulated? It feels like 20 cologne smells. All people around you are wearing different things. Autistics smell all of it. Hundreds of kids running around you asking questions in different languages, like you’re sitting in a chair that is missing one leg and trying to balance it. All of that going on and lights flickering too much hence why autistics have meltdowns.
This is Will. This is our son or rather it was that he was three and a half at the time. He’s seven now. He is excited because he was aware [00:02:00] of snowfall for the very first time in this picture. He expresses his excitement, his happiness by self-stimulation of flapping of the arms. We were really excited because this was the first time we were able to get a hat onto his head. He has sensory issues, overstimulation issues.
According to the Diagnostic and Statistical Manual of Mental Disorders, the fourth edition, the DSM IV, autism is a communications disorder. It is characterized by qualitative impairment in communication and social interaction. It is also characterized by restrictive, repetitive and stereotypical behaviors, interest and activities. You saw the flapping of the arms. I didn’t know much about autism when I first heard the word. I may have known what you knew which was Dustin Hoffman’s characterization of Charlie Babbitt in the movie Rain Man, his inability to make eye contact, his scripted behavior, his obsession with the People’s Court in Judge Wapner.
I came to learn in fact that autism was in fact a wide spectrum of behaviors ranging from those like that but who are institutionalized for their whole lives often non-verbal trapped inside their own mind and yet on the opposite end of the spectrum, there are brilliant, occasionally, socially, quirky characters. Any of you who watched The Big Bang Theory, persons with children of special needs know that yeah, Sheldon’s got Asperger’s.
We can also look at Albert Einstein, Thomas Edison or Alfred Hitchcock as people who are suspected now to have had some form of the autism spectrum. I didn’t know that back then. Didn’t know much although I thought I did. November 20th 2005, I thought that was kind of a [00:04:00] big deal. We had the world on a string. Our son was 13 months old, a beautiful but a little different boy, didn’t show the emotion that some other children did, sort of obsessed over some strange little things we called quirks.
I was a magnificent, talented, handsome, award winning communications consultant. In about a year, I had built a million dollar marketing and advertising company for somebody else and decided on about October 31st of that year that we were going to go out on our own, quit the job and try to do the same thing for ourselves. I had won more than 80 awards in the 10 years previous for my work in communications. What a difference the day makes?
I remember where I was sitting when my wife walked out from around her office with tears in her eyes and she had Googled some of Will’s little quirks and said, “Tim, I think Will has autism.” Our world inverted and we began to go through all of these stages of grief, anger, frustration, fear, misunderstanding, denial. It’s a tough road. We had no family here with us in Columbia. We knew nothing, knew nowhere to turn.
According to Autism Speaks, eight out of every 10 marriages of person where they have a child with autism end in divorce, eight out of 10 because it is so exhausting. It is such a chore, such a challenge to break through that thick opaque wall to communicate with those you love so dearly and yet I couldn’t get over the irony of here I was, this widely lauded [00:06:00] communications professional who could not communicate with the one person that matter most to me in the world, my beautiful, beautiful boy.
We’ve come a long way since then. Today, April 14th, 2012, we spanned a long gap. Our paying clients now subsidize our work with more than a dozen small non for profits who couldn’t afford it otherwise. I’ve had the pleasure, the privilege of speaking to more than 1,000 non for profit organizations about how there’s never been a better time to do it as you do but there’s also never been a more important time to be good at what it is you do.
My wife and I’s relationship is strong. Our family’s relationship is beautiful. Why? Because of what our son, with the communications disorder as the DSM IV calls it, taught us about communication. The very first lesson came in our very first therapy, our very first intensive two-week treatment at TouchPoint Autism’s Central Missouri Autism Project.
We went in for two intensive weeks with our son, Will and they called it parent training. That sounded really odd to me. Didn’t they know I was kind of a big deal that I already knew a lot about communication? Why parent training? Why isn’t it child training? Those first wonderful therapists said to us, “Tim, you cannot expect someone else to change his behavior until you’re first going to change your own.”
You’re all here today because you want to make a difference, because you’re wired a little bit differently. You in this room are not normal and you have to understand this lesson before we can continue. I started this morning with a finger [00:08:00]. Also, in that first two-week training, we taught our son to make eye contact.
Persons on the autism spectrum don’t follow the same normal social cues that you and I do and so they taught our son. They taught us to teach our son how to make eye contact, something he has kept now his whole life, something that persons on the autism spectrum sometimes never learn. That was a good day. That was a big day.
You know another big day? After the two-week training had ended, they came for some in-home visits from TouchPoint and Will who was non-verbal, Will was non-verbal until he was about three and a half years old, he was two and a half and he had one of those little leap frog toys that you press letters and it makes the sound of the letter. You know what I’m talking about. Sarah, his therapist had done a session and was getting to ready to leave and she said, “Okay. Bye, Will.” Will sitting in his high chair took his leap frog and typed B-Y-E. He wouldn’t talk for another year but he was communicating. We had to learn to change our behavior.
I always tell people, you tell people you have a child with special needs and there’s this uncomfortability between you. They don’t know what to say. They don’t know how to act. Now, I always tell people, “Please don’t feel sorry for us. We are a family just like your family. We celebrate stuff too. We typically just celebrate different stuff.”
What I learned most of all from the things we began to celebrate is that it was awfully hard [00:10:00] to ever give a damn again about Snooki or Chloe or who said what to whom or which advertising agency won the latest CLIO or One Show or ADDY award. We began to learn very quickly and very clearly how to separate the truly important from a merely urgent and we really understood that we needed to question, vehemently question the ways we measure success in this country whether it’s fame for fame’s sake or how well somebody hits a golf ball at the expense of everything else in his life. Award shows, I was so young.
For the first 10 years of my career, I used language. I could make words dance. I could make metaphors move. I could make similes like sing but they were a mask. They were a mask for lack of confidence or a lack of understanding about a client or a product or a service. I prettied my clients up in costumes that I conjured out of thin air and out of the sorts. What a waste of time. I am so thankful that my son taught me that all of it was a waste.
Are you familiar with the concept of literal thinking? Let me give you an example. It’s raining cats and dogs outside, right? You’d grab an umbrella. You tell a person on the autism spectrum that it’s raining cats and dogs, they’re going to dive under the bed and repent because they’ll think the end is near because they’re imagining big, fluffy cats and big, barking dogs falling from the sky.
Persons with autism struggle with abstractions, figures of speech. They don’t understand the things you and I take for granted. I was crushed when I learned this, this literal thinking. How would my son [00:12:00]ever know what a master I was at the English language?
The back button changed everything for us. The rapid levels of search that you heard before my talk this morning changed everything. Gone are the days when people would give you minutes and minutes and minutes before you get to the point, even extra seconds. I began to demand more from my clients because my son demanded more from me. Substantiate your claims. Just say the darn thing. Drop the cat in the punchbowl and get to the point and speak with clarity. There’s going to be a lot of big ideas in this room, at lunch, in our conversations today. Say it simply. See it clearly. Say it straight.
Do you even notice how poorly sarcasm translates to the internet so much so that people feel they have to put stars around their sarcasm so that people will get it? My son doesn’t get sarcasm. He doesn’t get those kind of abstractions and what we realized when we sat down and had to try explain something to him that was sarcastic just how mean it was. It makes you realize really quickly I don’t want to sound like that. I don’t want to be a jerk. I’m better than that. You’re better than that. We are better than that.
The fourth thing I learned from my son, I realized about a week ago as I was lying in bed with him [00:14:00], we have a ritual every night where Will wants me to lay in bed with him until he falls asleep. It’s perfect for a couple of things. First is that that is usually when he asks the most interesting questions. “Daddy, I have a question.” “Yes, Will.” “Do ducks and the other animals in the zoos get paid because it’s their job, you know?” With no hints of humor, he’s genuinely curious.
What a great gift to not be feathered by the bounds of normal typical thinking. Is he the lucky one? Maybe, but it gives me a chance to lay there with Will and hear these questions and as he falls asleep. I get permission to unplug from the day. It’s just me, him and a white noise machine. There are no tweets. There is no texting. There is no Facebook. There is no YouTube.
You don’t think the matrix has us? We live in a constant state of what’s next when what we really need, what my son taught me that we need is time to decompress, to be alone with our thoughts, to process all of the inputs, all of the stimuli that we get so we can formulate a plan to turn them into action, so we can do great things instead of just ingesting amazing content which flows at us like that current in Finding Nemo. Once you’re in it, it’s very hard to get out of it. It’s time to unplug if only for a short time just to process your own thoughts just so you can have a cogent in difficult conversation before getting the next stimulus. We have naturally adapted and assimilated. That doesn’t mean it’s a good thing.
Persons with autism cannot [00:16:00] hence the meltdown. We’re all going to meltdown if we’re not careful. If we don’t take some time to actually stop ingesting and start talking. Scott Belsky said, “I believe that genius in the 21st century will be attributed to people who are able to unplug from the constant state of reactionary workflow and allow their minds to solve the great challenges of our era.”
Remember what Keith said at the very beginning. You in this room were curated from a much larger pool of people who wanted to be here today. Please I beg you take that as a gift. Make a chance not just to have conversations but when you leave this room, take some time this evening to think about what you heard to make an action plan for what it is you want to do as a result of the things you learn today before you plug back in.
I almost left this out because it seems so self-evident but then I got to thinking, really thinking going back through pictures and videos from the early years of Will’s therapy, there was a time when we would have as many as four different therapists at our home in a given week, occupational speech, physical and behavioral and because we had no family here, these people became our friends and our family but we watched speaking with a boy who is non-verbal and how hard they would focus, how intently they would listen.
It wasn’t just so they could do their best to teach whatever it was they had to teach that day. It was so that they could give Will a signal [00:18:00]that they knew there was a person inside, a sentient being trying to communicate and that they could change whatever they were working on to adapt to Will if they paid enough attention. We picked that up from those therapists. My wife and I did and there would be nights when he was non-verbal where we could not go to sleep. Your head is just spinning and turning. Your shoulders and your neck are stiff and sore because you focus so hard. We went through so much Advil in those first few years because of how hard intently we tried to listen to try to understand.
Have you ever noticed today in the age of social media how many people at least a bazillion want to be heard but only maybe what, like six want to listen? What pushed me over the edge to include this point in this talk … I watched the TED talk last weekend from this most recent TED mainstage talk in February and Sherry Turkle who is a psychologist, author and a professor at MIT, she said, “Human relationships are rich. They’re messy and they’re demanding and we clean them up with technology and when we do, one of the things that can happen is we sacrifice conversation for mere connection. We shortchange ourselves and over time we seem to forget this or we seem to stop caring.”
Relationships are work. Conversation is work. Listening, not just pausing waiting for the other person to stop so you can start talking again is work, messy [00:20:00], demanding, delightful, rewarding work. It’s never been more important than it is right now. I had mentioned that team and how close they came to our family, this group of angels. We joked and called them Willie’s angels, team Willie.
In the days of Snooki and Chloe and dancing with fame for fame’s sake, if you’re looking for someone to emulate, if you’re looking for someone for your children to emulate, if it’s true as my friend Pennie Williams says that there are only three ways to measure success, money, fame or making a difference, look to these people. Look to the angels who have given of them self to help others. You want to make a difference especially the young people in this room whose brains are still malleable and we don’t have all the bad habits the older people of us do, volunteer Monday for a small local not for profit. You have the time if you don’t make the time.
Families like mine need you. We need you to care about something more than another line on your resume, than about money and fame. I’m surrounded. It’s sort of like which one of these. It’s not like the other. This morning, I’m surrounded by an MD, a PhD and a freaking astronaut so when I say I’m going to give you some research, it is way anecdotal but what I’ve observed is that by focusing your life on making a [00:22:00] difference, that takes care of money and making a name for yourself.
In this wake up Steve Jobs’ passing, has there ever been a more important time to think different, to ask interesting questions, to recalibrate this idea of normal? My son, my beautiful boy asks the most interesting questions, questions that fit outside, way outside on the warning track of normal, questions that fit outside traditional behavior, traditional schooling and thus people like Will tend to get marginalized the crazy ones, round pegs, square holes, called loser by some of the other kids at school because they don’t fit in.
If thinking like this is a typical, I don’t want to be typical. I have a couple more questions for you. My friend Ray Williams says, “Why is it that everybody wants their children to be normal but no one wants them to be average?” Another friend who runs a private school in Calgary says, “Why do our schools keep teaching children what to think, not how to think?” My friend Jordan says, “Autism truly is a different ability [00:24:00], not a disability.” Jonah Lehrer said on Wall Street Journal on March 31st, he said, “For too long, we assumed that there is a single template for human nature which is why we diagnose most deviations as disorders but the reality is there are many different kinds of minds.” That’s a very good thing.
The truth is we all have special needs. Dr. Abraham Maslow said man is this perpetually wanting creature. We need to feel safe. We want to feel part of a team. We need to feel like we are making a difference working towards some greater good. The problem with our society in this day and age in the age of buzz and overstimulation is that working towards some greater meaningful good, what does it require? It requires patience, sacrifice and delayed gratifications. Are there any three things we suck at more as a society than patience, sacrifice and delayed gratification? That brings us to our last point this morning.
When I was younger, talent impressed the heck out of me. Amazing young people who made things seem effortless knocked me on my can. I was so impressed. Will changed all of that thankfully. Will taught me that the magic is not in the size of your steps but the will that just keep going and encouraging others to do the same.
Take these things away from you today and see how you can apply them. Be willing to change your behavior before you expect someone else to change their own. Vehemently question the things you choose to celebrate, the people you choose to celebrate. Understand that clear trumps clever [00:26:00] every single time. Unbuzz, unplug, de-stimulate if only for a few minutes so that you can process information and take action. Listen. Actively listen. Don’t just wait for the other person to stop talking. Come together as a team so that the whole can become greater than the sum of our individual parts.
Question what is normal. Use technology. Use the smart people around you to recalibrate the idea of normal and lastly and perhaps most importantly, be in this for the long haul. Recent data by the CDC suggests now that one in 88 children in America are born on the autism spectrum. Please stop marginalizing them. Please understand they have different abilities, not disorders, not disabilities.
Relentlessness is the greatest expression of commitment. Commitment is the greatest expression of love. My boy taught me that. Then he asked me if he needed a permit to buy a ray gun. Thank you.
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