Katie Wright and Michele Iallonardi Broaden Scope of Katie Couric Autism Episode
The Iallonardi family.
Katie Wright and her sons.
You might recall Michele from the movie Autism Every Day, which came out many years ago. She is also in the new movie United States of Autism. Michelle is always a strong voice for families - and a realistic voice of the day to day challenges we face. Check your local listings for air time.
By Katie Wright
Watching the boys and adults affected with autism tape the Katie episode about autism was so inspiring to me. These are amazing, articulate, gifted and artistic young men. I loved hearing everything they had to say and learning how their parents dedicated their lives to facilitating their child’s success.
Christian cannot be interviewed on talk shows because he cannot speak.
As I was watching the show, however, I couldn’t help but be reminded of the huge disparity that makes up the autism spectrum. My son lives on the other side, the severely affected side of the spectrum. I am so proud of my 11-year-old son Christian – no one works harder (my opinion as his Mom!). However, Christian is not a savant, not a professor, not an artist, but just a typical kid struggling with severe autism. He was toilet-trained at age nine and needs 24-hour-a-day supervision because he has no awareness of danger. More to the point, Christian cannot be interviewed on talk shows because he cannot speak.
When people discover my son is severely affected they often ask if he received early intervention. Yes! So to all those parents who did the same, you are not alone! We spent our entire savings on the best intervention possible. The problem was that his untreated biological issues made cognitive progress impossible for many years. I believe this is because he has “total body” autism, not a behavioral disorder. Additionally, kids like mine have complicated gastrointestinal and immunological problems, which is, unfortunately, fairly common... Read the full post at Katie Couric's site.
By Michele Iallonardi
As a parent of a child with autism, I am always interested in hearing about the experiences of others in my shoes. Very often, the stories that most people know about are those who have made amazing strides and had incredible success despite their disability. As a Board Member of the Nassau/Suffolk Chapter of the Autism Society of America, I have met hundreds of families affected by autism, and I know firsthand the struggles that they face each day. As my son gets older, I have thought more about how the world perceives children with autism who are severely affected. When I look at my own son, my friend’s children, and many of the children in our autism community, our stories are very different than the ones who usually garner the most attention. I worry constantly about their future.
What I fear is that people will think that our children are not enough. That we are not doing enough. It concerns me that the world will judge us even more, and that people will think, “Well, if the parents had tried xyz, then maybe their child would be able to talk/play/work, etc.” I fear that the world will not accept my son as he is — a sweet, beautiful, loving boy – who is also significantly affected by autism.
Jackson is almost 12-years-old. He still wears pull ups at night. He speaks very few words, and is only understood by those who know him. Jackson stills likes it when you sing the ABCs or Twinkle Twinkle Little Star. He wants to be picked up all the time and carried around like a toddler and he does not understand that he might be too big for some people to lift. He loves to squeeze your neck so tight, when he is happy or sad, and he doesn’t know his own strength. Jackson would never intentionally hurt you, and he doesn’t even notice or understand when he does. My sweet boy needs to be watched every single minute of every single day in order to keep him safe. At 12-years-old, he will still need help to eat, wash, and use the bathroom. There is not a single thing that he can do alone. Read the full post at the Katie Couric site.
It's so true. While I want to celebrate the accomplishments of these children/adults who are on the higher end (who give me hope for my two!!) it's just so obvious that the media isn't showing "the other end!!" It's short-sighted (to say the least) to not show the stories of all individuals along the spectrum. Our friends who love and care for children on the severe end need our greatest support....we can't let the media push them aside.
Posted by: Melissa | July 07, 2013 at 04:08 PM
There so many sad things included in the tragedy of autism. For me perhaps the greatest is the betrayal of our misplaced trust by so many.
If there is a bright side to this betrayal of trust it is this. Autism is not the only major problem that we are being lied to about. Once you realize the extent of the autism betrayal a whole new seedy world will open up to you. As sad as this all is it will help protect you and yours.
http://www.youtube.com/watch?v=Po2fBUNQ72k&feature=player_embedded
Posted by: Lou | May 31, 2013 at 02:09 PM
Just try having a 39 year old with autism who has little speech; has paralyzed bowels due to institutional neglect; has IDD, bipolar and numerous other diagnoses. I am a widow in my 70s and trying to keep my son together so I can die in peace. There is no time for retirement fun. My younger son, fortunately is doing well and has a family, but I don't have time to get to know my two tiny grandchildren because I am trying so hard to keep my son with autism together and trying to live as long as God will let me. My child had very good early childhood training but he still has severe autism!
Posted by: Martha Moyer | May 31, 2013 at 08:46 AM
If the underlying problem is biological then early diagnosis only makes sense when those problems are addressed. Maybe the damage would be less severe with early intervention, and maybe the wrong treatment makes everything worse. For example in my case my child was anemic from bowel problems and the psychiatrist called it ADD without hyperactivity and gave her Adderall, which masked her symptoms of tiredness and made her speedy. Years later on a gluten free diet and a healthier bowel her anemia is cured and she no longer has ADD without hyperactivity. The media wants a good story and the highly gifted autistic kids make for good narratives, but the real story is the fact that in this epidemic no one is even looking for a cure while children and parents suffer from treatable elements within the disease.
Posted by: Kapoore | May 31, 2013 at 12:50 AM
I'm sure the networks and major media (including the Katie Couric show) all like the "autism- lite" version better. As someone who has worked with kids who really struggle with the most basic of things (toiletting, eating, talking/communicating) that really bothers me. I think its also a way for them to ignore the issue easier.
Posted by: jen | May 30, 2013 at 02:52 PM
I posted this on Katie's blog...
It's so hard to listen to Ralph and Michele Iallonardi talk about what autism has done to their lives on Autism Every Day. Michele's statement, "I can never die; nothing can ever happen to me" has been echoed a million times by moms across the country.
"I worry about his future. I worry about where he'll live."
We live in a world totally unprepared to deal with this emerging population of disabled Americans.
Doctors and health officials don't care why it's happening. The only response from the medical community has been "learn the signs," "early diagnosing," and "early intervention." They have no answers. The don't focus on all the concomitant health issues of these children.
And incredibly, doctors love to take credit for the epidemic with the incredible phrase, "better diagnosing" as if kids like Jackson were just missed 20 years ago.
Autism is never a crisis to officials. Families going broke trying to help their children--that's just the way it is for autism families.
What will it take for the U.S. to demand answers? How bad do the numbers have to get? Is one in every 50 kids not scary enough?
Children---why are we always talking about CHILDREN WITH AUTISM? Where are the adults with autism? What will happen when hundreds of thousands of kids like Jackson become adults?
The video "The United States of Autism" shows us the real world of autism. This is what everyone needs to watch. It's hard to walk away thinking that kids have always been like this, we just didn't notice. (And it was wonderful to see Ralph Iallonardi wearing an AGE OF AUTISM...the Daily Newspaper of the Autism Epidemic T shirt.)
Anne Dachel, Media editor: Age of Autism
Posted by: Anne Dachel | May 30, 2013 at 12:08 PM