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Home » Autism: A Family’s Journey by Julian Maha at TEDxSarasota (Full Transcript)

Autism: A Family’s Journey by Julian Maha at TEDxSarasota (Full Transcript)

Julian Maha

Julian Maha – TRANSCRIPT

All of us have dreams. All of us have ambitions. All of us long for perfection – the perfect job, the perfect family, the perfect life that we think will bring us great joy, happiness, and contentment. So we often choose a path that we feel will get us to this destination of perfection the fastest.

Sure, sometimes, life might come along and throw us some curve balls, but we often find ourselves picking up the pieces and finding our way back to the same path headed towards the same destination. But what if life doesn’t work that way? What if, by staying on this path, you miss out on all the amazing opportunities that other paths might have afforded you? Or worse yet, what if staying on this path only causes you great misery and disappointment?

My friends, I’m here to share with you today, that sometimes, just sometimes, in order to find your true life’s path, you need to be lost. How do I know this? Well, that is our story.

You see, in 2011, we got lost, not lost in a way that asking for directions or consulting a map would fix, but lost in a way of kind of being dropped into a strange country, not knowing anyone there, not knowing the language, not knowing the signs. This was our introduction to the world of autism. Before this, my wife and I were living what you would call the perfect life. We were both successful physicians. We had a nice house.

We could travel whenever we wanted to, and we had just welcomed our first born into the world. His name was Abram. Abram was born a beautiful baby boy. He slept well, we was always happy, and he was very precocious, even beginning to talk at about ten to eleven months. We thought that we were on our way, on the right path headed towards our perfect destination.

But all that changed when he turned two. Almost in a blink of an eye, he stopped speaking, he stopped sleeping, and would often wake up crying inconsolably from two to six in the morning. As parents, we were very, very distraught. Consulting the physicians in our local community, autism did come up, but we were often told that he didn’t meet all the criteria, or that he was too affectionate to be autistic.

Finally, we got an appointment to see one of the top physicians in the country, specializing in speech delay. He had recently coined a term called Einstein syndrome to basically describe children who were not autistic, but had speech delay but were highly intelligent.

On our way to that appointment to see him, we were filled with hope and encouragement that finally, someone would set us back on our life’s path. That was the moment that we got lost. I remember sitting in the room, the size of a broom closet. The doctor walked in. He examined Abram. And within about five minutes, he told us, “He’s autistic. He’s never going to talk. He’s never going to say, ‘I love you.’ He’s never going to call you ‘mommy’ or ‘daddy.’ And in two to three years, you’re probably going to have to put him in an institution because he’s only going to get worse.”

Keep in mind that Abram was only four at that time. It was as though someone had dropped a bomb right in the middle of our lives, and we were just standing there holding the pieces. But why this fear of a diagnosis? Why this fear of autism? Even though we were both physicians, our knowledge of autism was severely limited to a single paragraph in our medical school books. This paragraph described the condition, but it was very, very heavily emphasized on the bleak prognosis that it had.

And when our lecturers talked about autism, they would often talk about it in reference to the movie “Rain Man” – a movie about an autistic individual that had spent the most of his life living in a mental institution. So, as you can see, not only was our knowledge limited but it was very much in reference to the cultural viewpoint of what autism was perceived of at that time.

And in terms of the cultural viewpoint, autism had always been built by the media as a diagnosis that stripped away futures, destroyed families, and isolated individuals. Plunging Abram into a world of therapy, we became more and more disillusioned because nothing seemed to be working. It was then that we realized that what we needed was acceptance.

We needed to accept Abram for who he was instead of trying to keep on fitting him into this box. And we needed to understand that he was the same boy that was standing in front of us. Yes, he was autistic, but he had great potential, and he had so much to offer the world .We needed to figure out a way not only to understand him but teach him, and we needed the community not only to accept him but embrace him. We needed to choose a new path, a path to show the world what autism really was, in a new light.

How did we come to this conclusion? We came to it in three separate incidents. The first incident happened at a barbershop. Abram had always hated haircuts. He hated it because it was physically painful to him, because every single blade of hair that was cut was akin to 1,000 paper cuts. So, we would only take him to the barber when there was no one there, so it does not upset the other customers.

One morning, my wife had taken him in. It looked empty. The barber put Abram on the chair, and he was doing pretty well, all things considered. When about five minutes into the haircut, a lady that was getting her hair done in the back rushed forward, proceeded to grab Abram by his face and shake him, all the while, bereding my wife for being a horrible mother for not knowing how to discipline a child in public. This was the moment we really realized that autism awareness was not enough.

What we needed was autism acceptance. You see, awareness always gives you an out. Acceptance does not. Acceptance is proactive. It forces you to look at solutions rather than the problem. Acceptance is liberating and is powerful. For instance, if I were to tell you right now that your house is on fire, that would be awareness. What you choose to do with that information, that is acceptance, and that is powerful.

The second incident happened while I was at a grocery store with a good friend of mine. This friend of mine trying to console me about Abram’s future said, “Hey, Abram can always grow up to be a grocery bagger.” Well, it’s nothing wrong with being a grocery bagger, mind you, but that statement really struck a chord within me. Why would the world applaud me and pat me on my back if my autistic son became a grocery bagger, when Judah, my typical son, if he became a grocery bagger, the world would basically say I’m like the worst father ever? Why was the bar set so low for autistic individuals?

Autistic individuals have great potential, but we have to give them a chance. We need to create environments where they can thrive in, where they can learn better ways to teach themselves. We need to help the community understand, and we need to create job opportunities for them.

The third and final incident happened on a chance encounter with another family. This was a family that was so isolated since their son’s diagnosis that they had not been invited over to anyone’s house for the past five years. They had also been deserted by their friends and their family. That was the moment that we realized that acceptance needed to change into inclusion. Autism had always been an isolating diagnosis, but it did not have to be. We needed a way to reunite these families back into the community.

And that was the birth of the KultureCity movement, a movement to empower families, to reunite communities, and to see the potential in every single child; a movement that created a non-profit as it impacted more than 100,000 families across our great country in the past two and a half years; a movement that we would not have started had we not gotten lost on our life’s journey.

So my friends, sometimes, just sometimes, getting lost might be the best thing that could ever happen to you. It gives you pause. It makes you consider the things that really matter. And sometimes, you might even start a movement that could change the world.

In the words of the great John Newton, “Amazing grace! How sweet the sound that sav’d a wretch like me! I once was lost but now am found. Was blind, but now I see.” Thank you.

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