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

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


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)

Comments

  1. Post
    Author
    Bonnie LaPee

    The Autism Community is so amaxingly lucky to have someone like Julian who can so beautifully articulate the autism journey. The ups and downs, but mostly, the hope. So much hope. Thank you Julian

  2. Post
    Author
    Amanda Nau

    I have been down those road… when my first son was two our world was shaken and we felt so lost… Today at age 7 we strive to do the very best we can for not only him but his newly diagnosed 2yo brother!! Whether it be ABA 5 days a week on two different shifts, racing from work to pick up one boy and drop off another, meeting with specialists /councelors/and case managers, paying for cosmetologists to come to our home for hair cuts, avoiding family & friends that can't seem to come to terms with reality or one of a million other things it is soo soo worth it!!! I have so much hope in their future and for the future of autism acceptance!!! With us parents behind them pushing them to be all that they can be I know for sure that success will come ♡ I just want my boys to know that nomatter what we may face in the future they will NEVER be alone ♡ and there are tons of dedicated individuals out there dedicated to making AUTISM ACCEPTANCE ever so real!! Thank You Julian and your wonderful family for Kulture City and all that you all do for our wonderful babies ♡ we are all so greatful for all of the hard work that has been put into everything you guys do!! ♡

  3. Post
    Author
  4. Post
    Author
  5. Post
    Author
  6. Post
    Author
    Amber Frazier

    Julian, as always you are so well spoken and doing amazing things for these kiddos! The talk about the institution is too close to home! <3 Thanks for all you do!

  7. Post
    Author
  8. Post
    Author
  9. Post
    Author
  10. Post
    Author
    manderpanderz18

    very very touching. this was fantastic and message is strong and true. I'm a fairly new autism mom and things like this give me hope for my sweet girl. I am so proud of my sweet girl. through triumphs and struggles,I'm the proudest mom. thank you so much for this video.

  11. Post
    Author
    kassia bolden

    Thank you for spreading acceptance. I've had many stories also with my son. Mostly bad. It breaks my heart that people just don't understand autism. Thank you for telling your personal stories with us. Your amazing for what you do.

  12. Post
    Author
    Jennifer Warrick Davis

    Thank you for sharing your story, and doing your part plus more to spread awareness and acceptance. My son wasn't diagnosised until his was 5 years old, and even though it was the scariest moment of my life, it also gave me relief. I could finally figure out the path I needed to take to make his journey a better one. There isn't a day that goes by that I don't appreciate the little things. My son has opened my eyes and gave me a new life. Take time and enjoy life, enjoy the little things, get lost, and make the most of it. Again, thank you, not only for this, but for all you do!

  13. Post
    Author
    Amber McDilda

    I just want to thank you, kulturecity, and autism Santa!! You guys bring so much awareness for children with autism, in return bringing opportunities are kids really truly need!! My son was two years old when he was diagnosed. They handed me a packet of information and that was it, no help, no nothing.. I walked out feeling so overwhelmed and truly scared at what the future would hold for my son. I bawled in my car after and just said Mommy will do everything she can for you to make sure you succeed, I have made it my mission to get him all the help he needed. I did all the research I could, staying up way to late just reading everything I could on autism! I was not giving up on my son and have done everything humanly possible to help him! He has come from being non verbal to not even realizing he has autism, unless you are with him everyday and see his quirky ways.. Being a single mother coming from an abusive relationship with his father and not having that stability from a partner, that one needs, I truly found so much help, information, friends from the toysaucross and kulturecity page! I am forever grateful for everything you and them have done!! Inspirational, heartwarming, caring, knowledgable, full of life, and so optimistic about what the future brings for children with autism!! Thank you from the bottom of my heart!

  14. Post
    Author
    Michelle Morseman

    Julian you are an amazing man. The world needs more people like you. Thank you for all you have done for the autism community.

  15. Post
    Author
    Cheryl R

    Sounds like a VERY familiar journey! When we were in a restaurant, a man turned around while our son 3yrs old was stimming and said, "Is there something wrong with that kid?" That was the first time my autism mama, grizzly bear came out!I pray that soon the world can learn compassion for everyone. We need a new Kulture!!!!

  16. Post
    Author
  17. Post
    Author
    Hawaiian Lover

    Thank you for sharing your story and spreading awareness. I too am a parent with a child on the Autism Spectrum. I am so thankful that my little bundle of joy changed my life path. While it hasn't always been easy, in fact we rarely had a good day in the fist 4 years. I wouldn't change a thing about him as he didn't just change my life but saved it!

  18. Post
    Author
  19. Post
    Author
    Lisa Bambu

    Wow so touching! I worry about my daughter all the time if I get sick what will happen to her, I'm in a panic everyday n cry myself to sleep 😢

  20. Post
    Author
    Denise R

    What a moving story!  I'm sure all of our journeys have things in common.  I also think one thing to remember is our children with autism grow up to be adults with autism and the earlier the awareness and acceptance, the better the futures for all of our children will be!  Thank You Julian!

  21. Post
    Author
    jennifer trogdon

    I love how he talks about how we all walks a path , and how we need enpowerment, awareness ,and acceptance, if more people understood they would not be so judgemental.

  22. Post
    Author
    T and C Ingermann

    if you're a parent or family member of someone with Autism , this hits home. Thank you so much for helping others see how wonderful our children are.

  23. Post
    Author
    just me

    I worry about my son too…what will happen when i can no longer protect him…We live in an area that is extremely hard to find help…but thankfully i have found a place for OT and PT where he feels accepted and all of the kids who go there are special in their own way…Acceptance…..

  24. Post
    Author
    Heathen Ldy

    Yay for getting "lost"! The piece about inclusion, though short, is the most powerful part of the message for me. We hear a lot about awareness and acceptance, even potential, but very little about inclusion. Thank you for making that part of your message.

  25. Post
    Author
    Lizzie lulu

    I'm not one to comment much. But wanted to thank you. Keep up the great work. Or. GREAT JOB! As my lil' dude would say!!

  26. Post
    Author
    Brad Hamilton

    Amazing. Inspiring. Very touching. Thanks for leading the way and stepping up and bringing awareness and acceptance to our communities.

  27. Post
    Author
  28. Post
    Author
  29. Post
    Author
    House Savely

    Amazing talk! My son was diagnosed at 2.5 years, and my daughter is now 2.5 years and has no speech/stims/bites (she is scheduled for en eval in January). Awareness and acceptance are key.

  30. Post
    Author
    Joanna Ayers

    This is awesome. Autism has definitely put us on a different path than expected and although life is a bit more difficult, we are learning to navigate around any obstacles that stand in our way. I have a 6 year old son who is autistic.

  31. Post
    Author
    Jennifer Rose

    When my kids were first diagnosed I struggled with letting go of the idea of who they should be and the grief of who they never would be. I came to realize I wasn't losing anything my kids made me open my eyes and see the world in a different way. I struggled with this for awhile but I finally accepted this and I am blessed I did. Our lives have gotten so much easier my non verbal 4 year old has finally started to talk and I am blessed to hear his squeaky voice say mama <3 I wish I could have heard this when I was struggling to accept their autism diagnosis…. my youngest was our first diagnosed then my oldest I saw quirks but not like his little brother the doctor saw him and said no he isn't autistic but we will give him pdd-nos…. many trips later we got our diagnosis of autism along with 5 other diagnosis….. but it was from there that I now had tools to advocate for my kids… thank you for all of the eye opening in this video I will pass this along to those I know struggling to accept the new asd diagnosis it is very moving!!!

  32. Post
    Author
    Amber Lee

    We have been fighting for my child since she was born and I will never stop fighting the fight! You might get lost and turned around, stopped and go sideways a few times but man what a ride!

  33. Post
    Author
  34. Post
    Author
  35. Post
    Author
    Amber Lee

    If you keep telling someone they cant, are not able, not capable then they will believe they cant, are not but if you tell them the world is theirs they can do or be anything and not let anything hold them back they will and can do anything!

  36. Post
    Author
    Kristy Nalesnik

    Julian, you are awesome! Thank you from the bottom of my heart, for all that you do for our children. Your message will live long after any of us do. Xoxo

  37. Post
    Author
    Cassandra Leonard

    I agree so much with acceptance over awareness. My son is 11 and we still struggle even with acceptance from family. Thank you for your story

  38. Post
    Author
  39. Post
    Author
  40. Post
    Author
  41. Post
    Author
  42. Post
    Author
    rebecca Griskey

    I too was lost. I really teared up when you went from Awareness to Acceptance to Inclusion. So often we get EXcluded as my gorgeous, sweet, loving, wild 7 year old (who has autism, -a definition of his differences NOT a definition of him) can be difficult in settings other than out home. He has anxiety and frustration as he is on verbal and cannot express himself…yet. We are working with a large team of professionals to help him in our world and to help us understand his world. Thank you for what you do to help others see the beauty in our lives just as much as we do. I appreciate you!

  43. Post
    Author
    Amber Lee

    Its scary to think they used to put children like ours in mental hospitals like they were a dirty secret, not giving them a chance to even try to live in this world. My world would not even be the same without Boo. She has taught me more about life in 11 years than the 40 years I have lived on this planet. I do not think there is anything that this kid will not be able to do in this world, she just needs this world to accept her just the way she is. #justasIam

  44. Post
    Author
  45. Post
    Author
  46. Post
    Author
  47. Post
    Author
    April Raines

    Thank you for all you do and KultureCity. We love you
    We know and understand how it is Ryan is 19 and Erin is 15 and both are autistic , acceptance is needed..

  48. Post
    Author
    Karla Pacheco

    Thank you Dr. Maha for sharing the story on how your son Abram (hope I spelled it correctly) received his diagnosis. I hope you didn't go back to that particular doctor thought, how could he be so sure how far your son was going to go. And that lady grabbing your son at the barbershop, I would have gotten into my first fist fight. But I did like your closing statement, sometimes we need to get lost to stop and really think about our life choices, or like yourself, while you thought you were ahead, you just never saw this pause coming.

  49. Post
    Author
  50. Post
    Author
    Bobbie Masterson

    For the first few minutes I thought he was telling "our" story. The similarities to our lives was uncanny. I must applaud the your wife for her restraint in handling the woman at the barbershop. The bar is definitely set far too low for our autistic children, these kids are more than capable of GREAT things and should be pushed and encouraged to be the best they can be.

  51. Post
    Author
    Amber Lee

    I wish there was a program that could go into schools and teach the teachers and kids about our children, the school my daughter goes to really and truly do not know what it is or how to deal with it, they prefer the kids to go to another school in the system that has a classroom just for kids with autism. Why should my child be forced to get up an hour earlier to go to a school 10 miles away because she makes them uncomfortable? We need more people out teaching acceptance even if its at a state level.

  52. Post
    Author
    Tracy Johnson

    That was very powerful! I do not have any children but have many friends with autistic children. More awareness and acceptance is certainly needed! 💚

  53. Post
    Author
    Jessica .Whitman

    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

  54. Post
    Author
  55. Post
    Author
  56. Post
    Author
  57. Post
    Author
  58. Post
    Author
  59. Post
    Author
    Mike Adcox

    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…..

  60. Post
    Author
    Bonnie Phillips

    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.

  61. Post
    Author
    Sherri Burgan

    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.

  62. Post
    Author
    Cool Kid

    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 …"

  63. Post
    Author
  64. Post
    Author
    Baylee Waterbury

    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!

  65. Post
    Author
  66. Post
    Author
    Wendy Alston

    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.

  67. Post
    Author
  68. Post
    Author
  69. Post
    Author
  70. Post
    Author
    Kristi McDowell

    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).

  71. Post
    Author
  72. Post
    Author
    Brandi Murray

    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!!!

  73. Post
    Author
  74. Post
    Author
  75. Post
    Author
  76. Post
    Author
    Suzanne Deleon

    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!!

  77. Post
    Author
  78. Post
    Author
    Kandice Beal

    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.

  79. Post
    Author
  80. Post
    Author
    Christie Goulet

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

  81. Post
    Author
  82. Post
    Author
  83. Post
    Author
  84. Post
    Author
  85. Post
    Author
  86. Post
    Author
    Mandi Gilliam

    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

  87. Post
    Author
    Tea Time with Teri and Twins

    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

  88. Post
    Author
    Laura Booth

    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.

  89. Post
    Author
    Jennifer Rice

    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!

  90. Post
    Author
    Jaime Ferraro

    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

  91. Post
    Author
  92. Post
    Author
    crystal walborn

    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

  93. Post
    Author
  94. Post
    Author
  95. Post
    Author
    Michelle Hawkins

    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.

  96. Post
    Author
  97. Post
    Author
    GAMMY SMITH

    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!

  98. Post
    Author
    Jaydon Lopez

    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.

  99. Post
    Author
  100. Post
    Author
    Deborah Choma

    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.

Leave a Reply

Your email address will not be published. Required fields are marked *