Autism: A Family’s Journey | Julian Maha | TEDxSarasota

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Translator: Queenie Lee
Reviewer: Hélène Vernet 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. (Laughter) 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. (Applause)

 

47 Responses

  1. Jessica .Whitman

    November 14, 2016 2:14 am

    To hear it spoken is humbling. As a Mom, this is amazing and difficult to listen to because I can think back on my three moments easily. It is about inclusion. I love the analogy! Thank you and be well

    Reply
  2. Alex Voss

    November 14, 2016 2:24 am

    Thank you for this! You really explain what so many of us feel/felt. You rock! β€οΈπŸ’™πŸ’›

    Reply
  3. Mike Adcox

    November 14, 2016 2:26 am

    Love this……i get what he was saying and awareness to acceptance…..yes we need more acceptance…and for me once i realize that MY daughter was "different,nor less" and i came "to"….it was so much easier to help/guide her to be where we are today………rem if you met once autistic child you only met one ASD child………ACCEPTANCE that not one child is like the next one you meet.good job Julian…..

    Reply
  4. Bonnie Phillips

    November 14, 2016 2:30 am

    I have learned so much since my son's diagnosis and I thank you for all you do. KultureCity is something everyone needs to get involved with. Awareness will lead to acceptance. I will be praying for you and your family to be able to continue this fight.

    Reply
  5. Sherri Burgan

    November 14, 2016 2:36 am

    I loved hearing your story. I went through the same feelings and fears. I felt isolated and rejected by family that didn't accept or understand. I did everything for my son because no one else would take the time for him because he was "different" even being labeled "the bad kid". Tomorrow is his 20th birthday and he is an awesome kid and has a great future to look forward to.

    Reply
  6. Cool Kid

    November 14, 2016 2:37 am

    Ok..,,I just totally teared up listening to this!
    So many similarities and feelings along the way in my own families journey.
    "I once was lost, but now I am found …"

    Reply
  7. Baylee Waterbury

    November 14, 2016 2:42 am

    This is so inspirational! My son Baylee is 15 and we are currently trying to figure out a game plan of when we will be doing for a career. He has a thing for computers and we are challenging him for the next few years with coding class. I know he can do anything if he puts his mind to it! This just summed everything up, and actually had me testy eyed! Thank you so much!

    Reply
  8. Wendy Alston

    November 14, 2016 2:51 am

    Beautiful sooken..And so veey true. We need our children accepted .My son is a wonderful person. Wish ppl could see past his inability to speak. He still understand and does think ..Thank you for speaking the truth.

    Reply
  9. Kristi McDowell

    November 14, 2016 3:56 am

    Our son is 10 years old and non-verbal, you touched my heart on so many things you talked about! Acceptance is definitely the key to power. It breaks my heart when we are on situations where people don't understand and look at my son as if he isn't a person and their ignorance infuriates me!! On the opposite side, we have been at restaurants and have had people interact with us and treat our son as royalty! Awareness is great, Acceptance, Acceptance, Acceptance is what we will push for using our voices for our son and so many others! Thank you for your wonderful, inspiring videos and we also think Kulturecity rocks!!! As does Autism Santa (Thanks Micheal).

    Reply
  10. Brandi Murray

    November 14, 2016 4:14 am

    I have to say the hole story touched my heart my heart! Truly amazing! And Thank you so very much for your strength to help others like myself! The part about when the woman went to grab your son's face that really touch me because that also happened to me in a local family grocery store in my hometown and I was blown away at her comments and disgrace she was so rude and hateful and thank God I had control over myself!! Thank you so much from the bottom of my heart for Everything You do!!!

    Reply
  11. Suzanne Deleon

    November 14, 2016 4:53 am

    WOW! He could be describing my son! He is exactly right, we need more than awareness! As someone that has been through this and been so very lost, I continually pray for acceptance! We have lost friends and family that just could not handle this precious boys differences. We continue to struggle, but I would not trade lives with anyone. We are overcomers and have become a very strong family! We are blessed beyond words and yes, the potential is endless!!

    Reply
  12. Kandice Beal

    November 14, 2016 5:22 am

    My son was also thought to be autistic but said he's too affectionate. I love that you said to not only to spread awareness but to gain autism acceptance.

    Reply
  13. Christie Goulet

    November 14, 2016 5:31 am

    I especially liked the way this states acceptance forces you to look at solutions instead of the problem. Wonderful speech

    Reply
  14. Jill Canady

    November 14, 2016 9:16 am

    Really enjoyed this talk, so inspiring. I think we're all lost when we hear the diagnosis, but acceptance comes..

    Reply
  15. Mandi Gilliam

    November 14, 2016 10:02 am

    unfortunately i have two on the spectrum one more on the higher end and one on the low end. the video you shared really hit home. my youngest was developing well. not super fast or anything but what you would normally expect and at around 2 years old he just stopped. he stopped talking, and while he tries to get the words out he cannot and as a parent its heart wrenching to not know what they need or what they want and they cry. my son is also very loving and just a really god kid for being 3 years old and it breaks my heart to know that he can't communicate how he is feeling

    Reply
  16. Tea Time with Teri and Twins

    November 14, 2016 1:01 pm

    Thank you for sharing your family with us. I have one non autistic son, who is severely disabled and one with mild autism or high functioning autism. I related to your story on so many levels. My autistic son is left out of family and friend events. The other child is also left out even more. I hate how our life has become. I long for my children to be included and involved. One day they will.
    Thanks again,Teri Sprague

    Reply
  17. Laura Booth

    November 14, 2016 2:08 pm

    Such a powerful message. Thank you so much. I couldn't agree more, why was the bar set so low for people with autism. They have amazing potential. The world needs to give them a chance. Thank you, Julian for all you have done for the autism community. You truly are amazing.

    Reply
  18. Jennifer Rice

    November 14, 2016 5:55 pm

    I loved this. It is so true. It can be difficult as many people do not understand. It can be hard for me to take my son places. Kids his age don't typically like him as he likes to play with younger kids and still use his imagination at age 14. Not many accept him. His siblings I think still sometimes struggle with it but they do a great job especially when it comes to protecting him against other kids and such. Thank you so much for this. It was very inspiring to listen to!

    Reply
  19. Jaime Ferraro

    November 15, 2016 1:40 am

    Julian you never cease to amaze me! Not that it is right for anyone to feel isolated and lost I must say one of the best was chosen. When you became lost we all became a family supporting one another and learning how to teach Acceptance where before hand it was just awareness! You my friend have helped many of us find our way along this never ending journey! Thank you for all you do and God Bless

    Reply
  20. crystal walborn

    November 16, 2016 2:56 am

    Your story brought tears to my eyes. Like your situation my old "normal" is NOTHING like my new "normal" and I couldn't possibly imanage my life any different and it took me a while to adjust. But kristopher is the BEST thing that ever happened to my life!! There's still some hard times but I wouldn't have it any other way. Thanks for taking time to tell your story and get information out there. Maybe p e day ALL people will be really able to understand that life can change & at the time it might seem to much to handle but it gets easier and so VERY rewarding

    Reply
  21. Michelle Hawkins

    January 5, 2017 4:32 pm

    I love being lost! I look forward to each day with my autistic son. He always brings me joy and happiness. Watching him grow and do things his own way while only sometimes allowing me how to show him other ways fills my life with purpose. I love it and I wouldn't trade it for anything in the world.

    Reply
  22. GAMMY SMITH

    January 5, 2017 7:39 pm

    Raising my 3 grandchildren, 2 of which are autistic non verbal and who have experienced many physical and emotional traumas that most could not even imagine.
    I'm at the beginning of the journey. I am totally-utterly-painfully-crippling-no one will ever find me-lost.

    Your video gives me a ray of hope!

    Reply
  23. Jaydon Lopez

    January 6, 2017 4:36 am

    I really loved the video and can relate to the sentiments. Thank you for the way you handled the situation that not only raises awareness but also brings acceptance and inclusion.

    Reply
  24. Deborah Choma

    June 9, 2018 8:12 pm

    Thank you Dr. Maha. Grace is evident through your speech and expressions.

    Amazing Grace! how sweet the sound, that saved a wretch like me.
    I once was lost, but now am found. Was blind but now I see.

    Reply

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