The old African proverb “it takes a village to raise a child” appears to be truer now than ever before. With the 1 in 88 autism statistic already outdated, and the autism community clearly growing in size and stature, children today need a wide variety of supports and services in order to thrive and function to the best of their abilities. Yet when you talk with the parents of children with autism, you discover that many of these children are not able to access the resources they desperately need.
“There is power in numbers and there is power in unity.” –Dr. Martin Luther King, Jr.
With the 1 in 88 statistic, and with most of us knowing that the numbers are in fact far worse for younger cohorts, it would seem that the autism community should wield a great deal of power and influence. Yet we have very little power right now. Vaccines containing toxins and hazardous ingredients are still given to children by the dozen. The cost of organic, whole foods – the backbone of good health — is out of reach for many parents in our struggling economy today. Most of our pediatricians admit to not knowing what to do to help a child with autism, leaving parents to research treatments and therapies. Most parents discover that the most successful treatments and therapies are not covered by their health insurance, which in turn leaves many parents with mounting medical bills that threaten, if not annihilate, their financial security (if they even had financial security to begin with).
About a year before I got pregnant with my daughter, I attended a professional conference for which Carol Gilligan, author of In A Different Voice, was a keynote speaker. She noted that her latest research revealed that our society no longer had a collective voice or sense of common purpose. She continued that without a collective voice and action toward a shared cause, very little change could be made. Today, living the exhausting, hopeful, frustrating and blissful life of an autism mother, Carol Gilligan’s fears frighten me. Lack of change leaves an overwhelming sense of foreboding for the futures of children yet to be born. Arguably it could threaten the very existence of our society. Despite the bleak outlook of this fear, I am hopeful that the autism community will soon find its collective voice, its power in numbers and its power in unity to ultimately prevail in achieving access to all of the various things our children need to heal and thrive in life.
“This is our hope. This is the faith that I go back to the South with. With this faith we will be able to hew out of the mountain of despair a stone of hope. With this faith we will be able to transform the jangling discords of our nation into a beautiful symphony of brotherhood. With this faith we will be able to work together, to pray together, to struggle together, to go to jail together, to stand up for freedom together, knowing that we will be free one day.” Dr. Martin Luther King, Jr. “I Have a Dream” Speech at the Civil Rights March on Washington, D.C. 08/28/1963
I have never met better people or friends than I have in the autism community. Passionate, loving, resourceful, hopeful, intelligent, determined and unwavering in their efforts to heal their children, the autism parent is a formidable force of nature. One can only imagine what could be accomplished if all autism parents came together for the greater good of all children. Seriously. Take a moment and just imagine.
So, what is it that gets in our way? There is diversity in our community that is not fully embraced by everyone. In order to truly effect meaningful change, we need to find a way to support a whole community while still allowing room for individual differences. ABA is not better than Son-Rise or FloorTime. GAPS is not better than LOD or SCD. Speech therapy is not better than occupational therapy. DAN is not better than homeopathy. HBOT is not better than MB12. GcMAF is not better than AC Chelation. All of these treatments (and more!) exist and offer hope and healing to many children. There is no one treatment that will work for every child (save for unconditional love and the steadfast belief in your child’s limitless potential — that one works for every kid and it’s free!).
I have witnessed a great deal of criticism of parents by parents. “I can’t believe s/he spent the money on that!” “What are they thinking going that route? I’d never do that!” To be sure, everyone is entitled to an opinion. But when opinions begin to splinter an already marginalized community, there is little good that can come from sharing them. There is little good that can come from criticizing the efforts parents make to heal their children. Almost everyone I have ever met in my life has said, “no one knows a child better than that child’s parent.” Let’s all do more to honor that!
The bottom line is that we all want a better life for our children, and there are many different ideas as to what that better life looks like. There are many different paths to that better life. Some people (if not all) want better health. Some people want better supports. Some people want better therapies. Some people want access to alternative therapies. Some people want better services. Some people want better choices all around. All of us want acceptance and support as we move forward in the journey of healing our children, regardless of how different or similar our paths may be.
This is our shared cause: a better life for our children. Let’s work hard to remember that and come together to offer support coupled with meaningful action for our community as a whole, while working hard to allow that important space for individual differences. There is power in numbers and there is power in unity. Let’s come together now! We can do this! We shall prevail!
Keep thinking!
~Money
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I used to like the phrase “it takes a village” until the village started demanding we follow “their” recomendation for vaccines, started trying to pass legislation that they know better for kids with disabilties, and I have watched the village remove children from good parents for whatever cause they would like to insert here ______ for the good of the child. Now I say the village can stay the hell away from my child, thank you very much. The village already damaged my child, so she is my child, not the villages or the herds.
Also, I think the biggest conflicts come between those that don’t think our children need any treatments at all more than which treatment to provide, though I have seen some arguments develop around some alternative therapies or treatments, or attacking parents that have turned to drugs instead of those, but the biggest issues have always been those stating we can’t accept and don’t love our children because we have sought recovery or cures. More of the village inserting it’s benevolent dictator/nanny state behavior. We do need to unite where possible, but in some ways we will never see eye to eye with the “neurodiverse” community and that is OK with me.
The problem is that unlike other disorders or diseases, autism seems to create experts at every corner. Just because you have a kid with autism does not make you an expert. Just because you are an adult with autism, does not make you an expert. So there is a foundation of autism parents that are as ignorant as they are opinionated.
If I had a dollar for every Alison Singer wannabe that runs around telling people that vaccines are not a problem, the diet doesn’t work, or there is no recovery…
So we are fracture as a population by definition. Then add the various ways that one can either remove the toxins, fix what broke, and improve behaviours and you have all sorts of opinions that are based only on anecdotal information.
There are many paths to the same symptom. Gluten makes my son behave the same way as die off. Milk makes him behave the same way as yeast flare ups. Metals might have caused the problems to start, but they have long been removed, and the problems are now caused by something downstream of the initial toxic insult.
As a community we will never be united until the science is presented. And that will take money. Money currently being spent on anything BUT how autism happens, or how to really fix it.
For every recovery minded parent, there are 100 who listen to their “autism reseller” and ignore what is truly possible for their child. After all the money is in the treatment, not the cure.
All we can do is try to educate and influence our government to do the right thing.
And that will only happen if we present the science to them.
Very well said, Marco. However, I disagree with the last statement. We need to educate and influence the government to do the right thing for sure, but we’ve been presenting science for a long time and it has been completely ignored. In some cases, it has even been their OWN science (think Verstraeten version 1 rather than the published version, version 4). I think it will only happen if we educate so many “average” people that the “average” ends up being knowledgeable enough to “just say no.” When enough people are saying, “NO!” — loud and clear — that will influence the government in ways that the science alone never will.
Amen, Sister! It breaks my heart to see and hear all of the petty bickering that goes on in the autism community. There are so many brilliant minds, but we can never gain traction being a fractured community. It saddens me to no end that just recently, an autism blogger posted the question, “True epidemic, or better diagnosis?”, and to my utter amazement, almost half responded with better diagnosis! I responded then, that if the autism community can’t agree on this, how can we ever accomplish anything? I certainly don’t have the answers, but thank you for finally saying so eloquently what everyone in this battle needs to hear!
The whole better diagnosis statement always makes me raise an eyebrow. It’s hard to fathom that anyone could miss the fact that their three year old isn’t talking or is lining up every household object they could get their hands on. I suppose there will always be people who believe that. Even so we need to come together to work for better health, choices and options for these kids. The petty bickering is hard to see and hear, especially knowing that all it does is disempower us as a community. It’s nice to have role models like you, who are working hard for empowerment.
ABSOLUTELY SPOT ON. This is the best of what I like to think of as “spectrum thinking.” We have to become more sophisticated as a group and develop respect for treatment modalities (barring abusive ones like electric shock adversives) in the same way the novelty/uniqueness of each person’s expression of autism is now accepted. The phrase, “If you’ve seen one person with autism, you’ve seen one person with autism” is now part of our collective speak — the same “spectrum thinking” needs to take hold in regard to causation and treatment. It is not difficult to respect persons with autism, and to want them to have every opportunity to be free from paralyzing anxiety, physical illness, sleeplessness and all the other debilitating aspects of autism while embracing and accepting the person that they are — this crummy and artificial paradigm of self-advocate versus parents should not divide us socially or politically. We are powerfully motivated, and growing in numbers… wouldn’t it be amazing if the rising of our mighty, and unified voices grew loud enough for ASD and developmental disorders in general were treated like the PUBLIC HEALTH EMERGENCY they really are?
Very well said.
“wouldn’t it be amazing if the rising of our mighty, and unified voices grew loud enough for ASD and developmental disorders in general were treated like the PUBLIC HEALTH EMERGENCY they really are?” It most definitely would be amazing! I really hope we see it happen. If we could unite we truly would be formidable!