Matthew McConaughey is promoting autism awareness. Several big news sources have picked up his video and are encouraging us to share the link. In the short clip, McConaughey states that there are over 70 million people living with autism and that children with autism need our support. Specifically, they need an early diagnosis and access to services. Teaming up with a company named Kiehl’s, McConaughey wants to give these kids a real chance. Sharing the video can help make that happen. For every share, a $1 donation will be made to Autism Speaks. With this campaign, McConaughey hopes to make a lifetime of difference.
It sounds very, very sweet, but the donations will cap at just $200,000.
I’m not complaining.
Alright, alright, alright!
Let me try again.
McConaughey’s final thought in that video, that’s he’s hoping to make a lifetime of difference, is what’s making me more cynical than hopeful. A lifetime of difference. What a perfect phrase for what I had hoped for my child compared to what actually became his reality. Autism became his reality, and it’s not the kind that you see happily portrayed in the news or on television.
I don’t know too much about McConaughey’s children, but I would venture a guess that he’s not the parent of a severely affected child with autism like I am. I’d also venture a guess that his perception of autism is a far cry from the autism reality that my family lives. Until he meets us, which I’d be more than happy to have happen, he and other Hollywood celebs focusing only on awareness, will never know how expensive and difficult life is for families like mine. It is expensive, and some days, life with autism is very difficult.
Difficulties aside, it costs quite a bit to care for a child with autism. According to Autism Speaks in 2014, it’s $1.4 million over a lifetime. CNN Money offered a higher figure of $2.4 million when an intellectual disability existed.
I haven’t done the math for Ronan’s care in a while, but if I had to offer an estimated figure on paper of what it costs for just one year to keep him healthy, safe, and alive (remember, he’s prone to wander), that cost is about $100,000. Anti-seizure medications, doctor appointments, co-pays, weekly therapy appointments, and respite add up. Not included in that figure are the supplements he takes or the allergen-free foods that Ronan eats or the diapering supplies he requires. We’re blessed with some insurance coverage, but we pay the must-haves on our own, too. And when we can’t pay those out-of-pocket expenses ourselves, because sometimes we just can’t, the generosity of kind souls have helped us make ends meet.
I’m in awe that we’ve survived paying for everything for as long as we have. When money is really tight, we look for grants to help pay for Ronan’s needs including alternate therapies and medically necessary equipment that insurance companies refuse to recognize and cover. I’m grateful for grants and for the organizations who offer direct assistance to individuals with autism. I’m extra thankful when help comes from another autism mom on the other side of the phone! We’ve gotten the most support from the National Autism Association. When I called them years ago, they recognized that I had a great need. Stepping in quickly, they did not stop their efforts until I had secured the help my son and my family needed. Run by autism parents, the NAA knew exactly what a mom like me truly needed.
They may be small compared to Autism Speaks, but the NAA does big things for everyday families like mine. Autism Speaks isn’t like NAA or some of the other autism organizations. True, they are one of the biggest. But if you ask me, bigger doesn’t always mean better. Bigger costs more. Bigger wants more…more limelight, more recognition, more press. Bigger tends to step on the small to get what it wants…which could be more limelight, more recognition, and more press. The smaller orgs, like Generation Rescue and TACA, are much, much smaller like NAA is, but I find that they, too, do much, much more for families like mine with a fraction of the manpower and the funding.
McConaughey doesn’t say where the funds he’s helping raise are going to go, but let’s say it will go directly to the that 70 million he mentions. If it’s shared with each of those individuals, their cut would be $0.002. That’s it. I’d love to ask specific questions like who’s going to get the money? When is that going to happen? Will there be stipulations? Can funds go toward dietary intervention, biomedical intervention, or alternative medical treatment not usually covered by insurance? Or can it be earmarked for a later date? I don’t like to think about it, but when Ronan ages out of all things pediatric, and when my husband and I get too old or are physically unable to care for him, we will have to look for a long-term place for him. I cannot even fathom how much long-term care is going to cost. Since that could be a reality for us, I am starting to look for more information on what kind of options we will have. I like what The Autism Trust is doing and will keep them in mind for long-term care should that need arise. Homebased in Texas, maybe McConaughey and I can meet there to chat about autism and the toll it can take on a family.
As mom of a severely affected child whose child’s benefits are in jeopardy (gal from the agency has still yet to call me back), I’m trying to be hopeful. I’m trying to be positive. I’m trying to be grateful when I see a public figure take on autism. But I think this latest campaign misses the mark. That said, I do believe that McConaughey’s efforts are genuine. Those efforts very well could help someone somewhere. Personally, I’d love to see that help go toward the smaller orgs who are knee-deep in autism reality like I am. Regardless of where the funds do go, if the autism rate continues to rise, which I do believe it will, those 70+ million people already living with autism will need a lot more than $200,000. They’re going to need so much more than that.
Cathy Jameson is a Contributing Editor for Age of Autism.