By Lisa Ackerman
Many families living with autism are FRUSTRATED that not much is seemingly being done to help the autism cause. As a parent, I am in agreement. After being on this journey for almost 14 years, it’s sad to see the lack of progress made in this area. There just seems to be more people affected, fewer resources to offer help, and no end in sight.
You may have thought, if autism affects 1 in every 50 kids (1.) that means there would have to be a lot of celebrities, congressional representatives or other well known, high-profile figures that have kids with autism. Your assumption is correct. There are a lot of famous people with kids affected by autism. I know, as I have met some of them. They are parents like you and me who have needed to reach out to us for help as well.
I have always wondered – why don’t celebrities and famous people help? The answer is complex.
Issues that affect children can be extremely challenging. Your job as a parent is to protect and help your child be the best they can be. When your child has a disability, it doesn’t matter WHO you are – the process can be debilitating. Add this emotion with also being constantly viewed under a “microscope”. People who have a high profile are subject to a lot of attention. It is the nature of their “job.” Many kids born to celebrities don’t ask for this attention. Such attention could really lend itself to children being a victim of horrific assaults in the media or worse. I understand why people who are famous don’t want to be involved. Their child needs to be protected.
Most parents of children with autism are not famous; they don’t have cameras in their faces wherever they go. They live their lives without fame (or money!!)
Our famous, high-profile friends often live in a fish bowl. People can see everything they do – even things they don’t want to disclose.
When a celebrity steps out to help a cause, it is a pretty fantastic thing. We have many famous friends who have helped TACA. It is equally fantastic when someone also wants to help without even having a child affected by autism. We really appreciate everyone’s efforts to assist in creating more awareness.
When you meet or read about high-profile people who have a child with autism, don’t judge them for their effort (or in your opinion, their lack of effort). Their journey is completely different.
Autism is the least funded disability in America affecting the most children. I hope someday, more brave souls step forward to help. Instead of chiding these celebrities, let’s coax them into action that will make a big difference for families and individuals living with autism.
See, I suppose I just come from a different point of view – I want a celebrity (or politician, etc) who lends themselves to the cause to be someone who is passionate about it. I don’t want a celebrity who takes up Autism as their “cause” to do it for the sake of just picking *something* to be for. I want them to be invested and involved because it’s important to them, whether or not they have a family member or friend with ASD.
So I suppose I’m just understanding why there aren’t many who advocate. (Since the same can be said for so many other causes…)
Because a lot of them support Autism speaks. Autism speaks parties with them.
Shrug. I haven’t seen them supporting Autism Speaks either?!. And I have zero reason to suspect that the causes that celebrities systematically pick are unimportant to them. I suspect the reason they don’t come “out” to the public about autism in their family is because autism is still a stigma. The persistent viewpoint is STILL “it is the parents fault. If they tried, they could get the child to behave.” We as a culture are very uncomfortable STILL with behavioral disorders. It is much more acceptable culturally to have a child with diabetes, MS, or almost anything else…
Some of the most MOVING moments in history are when celebrities were involved in different causes involving a microphone, personal statement and a congressional hearing. That is one important step missing from the past autism efforts.
I almost hesitate to say this but… we need a celebrity or high profile person with no attachment to autism (via a relative) to take the torch. It will hit home with people with no personal attachment to autism. I know there are athletes like Ernie Els, Doug Flutie, etc. that do fundraise heavily for various foundations and causes. I commend them for being public about their experiences and for using their fame to raise money for the cause.
Lisa, you gave my wife and I the TACA Journey Guide in 2007 at an Autism Conference at the Anaheim Convention Center. You probably don’t remember as our meeting was brief and probably one of many such interactions. But, I want you to know that the book you gave us was our first “autism bible” and we still reference it. It has helped our son immensely and helped direct us in the right direction on a host of issues. Thank you for that. We also met our son’s future special ed. lawyer at that conference who has also been an invaluable member to my son’s team.
When we went to that conference our son was completely non-verbal, had chronic diarrhea, zero eye contact, and spun in circle most of the day. Six years later he is now mainstreamed at school (with supports), has friends, is verbal with a vast vocabulary, passes normal stools, and while he is still far from “typical”, he is a loving, growing, and compassionate, caring boy. How a celebrity couldn’t see upside in experiencing the joy and awesomeness of those kinds of results for kids affected by autism is beside me. There has to be someone out there with a huge platform that would want to be a part of watching children with “no hope” shock the world.
Jeff – thank you for your note. It made me smile. Our kids have SO MUCH PROMISE. They are diamonds in the rough. It would be LOVELY to have others witness and see that opportunity. Blessings, Lisa