I may take some heat over this from the autism community, but the question has been raised and if we’re going to be open and honest about our lives on the spectrum, I feel I need to be honest here as well.
Before you comment on this, please remember, this documents our experiences. It may be vastly different from yours. This forum is established to share our experiences and offer hope and encouragement to those on the spectrum and a glimpse into our lives to those not on the spectrum. This is a place for positive encouragement and the exchange of ideas in a productive manner. Any and all condescending remarks will be deleted. This is not a debate forum, but rather a place for us to share about our experiences.
That said… this is my take on I Am Autism.
Spring is around the corner. Really, it is. And as such, most runners I know are filling their calendars with runs for causes in which they believe and anything else they can fit in.
You may recall reading about our experiences last fall in St. Louis at The Color Run. We rallied a team of family and friends who ran for our boy. The team, “Color Me BENTON” was made up of some of the finest individuals you could ever hope to know. These people love deeper than most will ever know, smile bigger, laugh harder and love stronger than we could have ever hoped for. They embraced us and our son in a way we couldn’t have ever dreamed, the same as many of you have.
St. Louis will play host to The Color Run benefiting Autism Speaks again in April and several Color Me BENTON team members have asked if we’d be making the trip again. Unfortunately, we have a conflict with the date and are unable to attend.
As much as we LOVED our experience last year and whole-heartedly supported Autism Speaks and all they seemed to be doing to support families like ours, I have since learned a great deal about the organization. Sadly, the vast majority of funds raised goes to paying salaries rather than helping the families they claim to support. There is absolutely no representation of autistic adults on their board and even the one autistic employee identified has since left the organization because despite their catch phrase of “Autism Speaks, It’s Time to Listen” it seems they will not, at least not to him or to any of the families who have tried to speak with the company about their children. And, this is perhaps the most disturbing point in all this mess: the founders of the organization did so in hopes of helping their daughter cope with her son’s diagnosis. Yet, they put together a call to action on Washington in hopes of garnering support from our politicians. Sounds noble, right? I found the call to action online today and am appalled at what I read.
True, it starts innocent enough, “If three million children in America one day went missing – what would we as a country do? If three million children in America one morning fell gravely ill – what would we as a country do? We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made. We’d leave no stone unturned. Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.”
It’s what followed that turned my stomach.
“Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house. That is – if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes? Climb the furniture? Raid the refrigerator? Sometimes – the silence is worse.
“These families are not living.
“They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely – 24/7.
“This is autism.
“Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future.
“This is autism.”
While I realize that there are a great many cases where the fears and frustrations mentioned are a reality, I feel we cannot deny the millions of families who don’t live like this.
Another campaign they put together makes the claims, among others, that “I am autism…If you are happily married, I will make sure your marriage fails. Your money will fall into my hands and I will bankrupt you for my own self-gain. I don’t sleep, so I will make sure you don’t either. I will make it virtually impossible for your family to attend temple, birthday parties, a public park without a struggle, without embarrassment, without pain. You have no cure for me…your neighbors are happier to pretend I don’t exist until of course, it’s their child…I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry wondering who will take care of my child after you die. And the truth is, I am still winning. And you are scared, and you should be.”
As a parent of one with autism, I am beyond myself about this. However, if you can stomach your way through the first half of the campaign, you will catch the response:
“And to autism, I say, ‘I am a father, mother, sister, brother, grandparent. We will spend every waking hour trying to weaken you. We don’t need sleep because we will not rest until you do. Family can be much stronger than autism ever anticipated. We will not be intimidated by you, nor will the love and strength of my community. I am a parent riding towards you. You can push me off this horse time and time again, but I will get up, climb back on and ride on with the message, ‘Autism, you forget who we are. You forget who you are dealing with. You forget the spirit mothers, and daughters, and fathers, and sons…we are coming together in all climates. We call on all faiths. We search with technology…and a growing awareness you never anticipated. We have had challenges, but we are our best when overcoming them. We speak the only language that matters, Love for our children. Our capacity for love is greater than your capacity to overwhelm.
“Autism is naïve. You are alone. We are a community of warriors. We have a voice. You think because some of our children cannot speak that we cannot hear them. That is your weakness. You think because my child lives behind a wall that I am afraid to knock it down with my bare hands. You have not properly been introduced to this community of parents, of siblings, of friends, school teachers, therapists, pediatricians, and scientists. Autism, if you are not scared you should be. When you came for my child, you came for me. Autism, are you listening?”
So where does all this leave us with participating in an event that supports Autism Speaks? Honestly, that’s a tough call to make. But, here’s the way I see it: research is research. If we are hoping to find the cause and develop treatments and therapies to help our son and others like him (Notice I said “help” not “cure”.) then I have to believe that research is good. I may not agree with all the opinions of those doing the research, but if research will help, then research is good.
In all my 40+ years, I have yet to find any one person with whom I agree 100%, therefore, I don’t think it’s fair to assume that I’m going to agree 100% with any company or organization. I don’t agree with their scare tactics. I don’t agree that autism needs a cure. Autism is so much a part of who our son is, I honestly can’t imagine him without it. We, as a family, have been granted so many blessings due to his autism. We appreciate the little things more. We laugh so hard we cry. We have been brought together on a level most families will never know. True, we have some very, very difficult days, but our lives are wonderfully blessed by this little man who put us on the spectrum. We work every day to help him to grow and develop. That is our honor as his family. Therapy, time and effort, and lots of it all working together have brought great progress for him. It is truly a blessing to hear one of our neurotypical kids say things like I heard earlier tonight, “Mom, I think Ben is doing really great. He’s come a really long way lately.”
Amen, Buddy. Amen.
For us and our family, this is autism.
The happy, smiling little guy in the front row, he is our autism, and we are incredibly blessed for it and him.
Photo Credit: Spangler Photography