The controversy around Autism Awareness Month continues, but the controversy continues to grow. In the past the argument centered on autism awareness versus autism acceptance. Now the divide has grown to autism awareness versus autism acceptance as action.
As I point out in my post, “Autism Awareness, Acceptance or Action, Where Are We Really?” caution may be the order of the day as we shout for acceptance as action. That said, if we really want acceptance or acceptance as action, what has to happen to get us there?
The First Step toward Acceptance Is Counterintuitive
In my post, “The Counterintuitive Nature of Autism,” I share that many things having to do with autism, are counterintuitive. I think that is true here. For autism acceptance to happen, I think first there are things we must refuse to accept.
We must refuse to accept research based on biased questions and small sample sizes that do not represent the population of autists and that do not reflect the true nature of autism and autists themselves.
We must refuse to accept the “help” of support groups and organizations who perpetuate the myths that autists cannot survive in our society without their assistance (while asking ourselves what happens to these organizations if we realize we can learn to live as autists without them? Scary right?)
We must refuse to accept that providers have some right to judge us and find us wanting when we do not follow their advice or do things in the manner they would choose.
We must refuse to accept “treatments” for autism that treat symptoms without understanding underlying causes.
We must refuse to accept that school systems and personnel know better what our children and families need just because they believe they are in positions of power over us.
We must refuse to accept the statistics that indicate that autists are not working or contributing to society in meaningful and purposeful ways.
We must refuse to accept that the stereotypes and generalizations apply to all autists.
We must refuse to accept that help or solutions have to have the word “autism” in them.
We must refuse to accept the depiction of autists as individuals who sit with their heads between their hands rocking back and forth unable to cope with the world and life around them.
We must refuse to accept that our lives can never be better.
I could go on forever here. But you get it. For autism acceptance to happen, we have to refuse to accept what the world has seen fit to grant us. It is not enough. Just like we became a free country because we took a stand, just like slaves were freed because we took a stand, just like African Americans and women obtained the right to vote because we took a stand, we have to take a stand.
What Do These Refusals Look Like in Real Life?
So each of the above suggestions is at a somewhat abstract level, but what if we convert those to types of concrete actions we can take to move acceptance forward? What does those actions look like?
What if we refused to donate money to research and organizations that promote biases against autists that damage their ability to succeed in school, work, and life by perpetuating the notion that autists need tremendous assistance to be fruitful?
What if we refused to participate in research/organizations that do the same?
What if we refused to abandon people whose lives look hard and started pitching in to be helpful?
What if we refused to use generic cop-out words like “meltdown” and started specifically identifying the cause of the change in behavior such that it could be addressed and the behavioral cycle could stop or at least be lessened?
What if we refused to click on pictures and links that portray autism negatively?
What if we refused to bash our kids on social media?
What if more autists refused to be quiet?
What if, what if, what if? So many choices!
So acceptance may start with action as many people are arguing – it may start with the action of refusal to accept the status quo.
But That Only Gets Us Part of The Way to Acceptance – How Do We Get The Rest of The Way?
If we must first refuse to accept the status quo, we must then demand something better. Thus, acceptance requires that we demand something better. Every minute of every day. Very simply, we must demand to be treated like the valuable, beautiful, worthy people that we are. We demand to be viewed as people whose struggles make them stronger, more resilient, more determined, and more powerful than anyone has yet to acknowledge.
This transition, of course, will not be easy.
Are We Ready to Accept Acceptance?
In preparation for this change, we must to come to a place where we can accept acceptance, both from ourselves and from others.
Crazy, right that we would need to learn to accept acceptance? What??
But think about this: How often have you been offered a complement and struggled to accept it? Did you simply thank the person giving you the complement, or did you push it away? Did it feel good to receive it, or did you feel embarrassed? Yeah, that is what I am talking about. It is tougher than it sounds!
Yet, if acceptance is offered, and not accepted, it will be offered less and less. So, we must learn to accept acceptance!
We Have To Define Acceptance
A month devoted to autism awareness or as many want, autism acceptance, requires that we know what it is. In a recent post, “Autism Awareness, Acceptance, or Action, Where Are We Really,” I discuss this point. If we do not clarify exactly what acceptance is, we run the risk of achieving something we never asked for or wanted and missing the mark of attaining that which we need.
Organization and Structure Will Be Necessary
We need to know that there exist and participate in organizations/research projects willing to speak out on or work on our behalf, willing to acknowledge our gifts, and willing to pave the way for opportunities. I am unaware of many I feel I can support at this time.
Individuals Must Speak Out
Individual autists must keep speaking out and must speak out in larger numbers. Nothing is drowned out during Autism Awareness Month as quickly as the voices of the autists for whom the month was established. More, the autists who speak loud enough and often enough to be heard will make sacrifices to clear the path to acceptance as sacrifice will be required to get there.
No movement in the history of man (that I am aware of!) has been successful without the sacrifice of those who went first – because before you can fit in, you have to first stand out. Those autists, for example, who share their autism, their successes, and their failures (and we desperately need them to do so!) will pay a price and will need our support.
We Must Keep Living (Taking Action) While the World Catches Up
And while it is great to have people and organizations out front helping and creating a landscape for change, we must accept personal responsibility for our own successes and failures. If acceptance is action, we must accept ourselves and take action on our own behalf.
Using tools like the one I propose in my post, “The Best Free Resource for Autism Diagnosis and Management” will move you forward. Understanding the “9 Essentials for Creating a Life You Love with Her Autism,” laying out the points that comprise the Philosophy of Her Autism will move you forward. Refusing to accept less than you deserve will empower you and move you forward. You can insert here all of the things you have found that also move you forward, or better yet, put them in the comments below so others can give them a try!
No, it is not your fault you are living with autism in your life, but you can still take steps to own your life and your future. For those of you who don’t think I understand your struggle, check out my post, “Comorbidity: Life with Autism and Its Closest ‘Friends.’” We are no stranger to struggle at my house.
There is no substitute for personal accountability and responsibility. Embrace it. It makes you better. Even as we work for acceptance, there are those autists and their families and friends who are succeeding everyday. If you are one of the people who get up and face down autism and all that comes with it everyday, whether you yet know it or not, YOU ARE ONE OF THOSE SUCCESSFUL PEOPLE.
We Must Begin to Celebrate
No, we don’t have to celebrate autism as defined by the hardships for which we never asked. We have to accept it is there and that to the extent we survive/thrive with it, we have accomplished something tremendous. Don’t believe me? You may hear from others that they “don’t know how you do it.” Know what that is? Acknowledgement of your strength. Others may ask you things that begin with “Why don’t you just….” Know what that is? Evidence that the struggle is so great, they can’t even begin to understand it. Because if we could “just” we sure would have.
Everything you do, everything you finish, everything you overcome is a win that must be celebrated.
We have to compare where we are today with where we were last year or ten years ago, not yesterday. Each baby step is a win and each win is a leap toward acceptance. What if the world saw us celebrate these wins rather than bemoaning the “losses” and the struggles?
Celebrate, celebrate, celebrate!
You have accomplished more than you probably ever wanted to in this lifetime. Be proud and celebrate it. The size of the win matters way much less than that you take the time to appreciate it!
Autism acceptance requires that we all allow ourselves to dream again, to hope again, and to believe again.
No one is going to make possible for us that which we think is impossible.
We will have to believe autism acceptance is possible and worth what it will take to get there. If we can live with autism and all that comes with it every day, we can do this.
We can achieve acceptance.
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