A new and exciting development is taking place in the autism community that has the potential to influence society at large by its very nature. I'm talking about one of its Members competing to be crowned the newest Miss America. The young lady who is up for this honor is named Alexis Wineman. According to the information found on her Facebook fan page, her platform is titled thus, "Normal is Just a Dryer Setting--Living With Autism." When she was in the 7th grade, she received the diagnosis of Pervasive Development Disorder--Not Otherwise Specified." Today, I saw the photo of Alexis in her competition gown. Of course, she is beautiful in the picture. She has become the new pride and inpiration of the autism community and the new poster girl for "making good" and for autism awareness. Alexis is the first Miss America contestant who has been diagnosed with an autism spectrum disorder (ASD) and is competing as Miss Montana. Today, I saw posts about Alexis that several people, including autism nonprofits, posted. Of course, many left comments cheering Alexis on, one saying, "Team Alexis!" and "Go Alexis!" and much more. But I wonder, even if Alexis wins the crown, what will this do for the autism community? She speaks of autism awareness on her fan page but do we need more autism awareness? Do we need Alexis's success to convince an uninformed society to welcome people with autism and other disabilities?
Please do not get me wrong. If Alexis wins, not only will her win bring her, her family and her friends much pride, happiness and validation, but her win would also inspire many in the autism community by showing us all what people with autism or any disability can accomplish. This is most certainly true! There is not a doubt that Alexis has worked very hard, and continues to do so, to make all this possible. She has no doubt, over the years to present, put in endless hours of discipline, practice and pushing herself outside of her comfort zone, to qualify herself to even be eligible to compete for the crown of Miss America. Put autism in the mix and you can see that Alexis has overcome the obstacles of her differences, making her accomplishments all that more inspirational. Whether she wins or not, Alexis, like Temple Grandin, PhD, and other successful people with diagnosed autism, shows all of us, autistic or not, what is possible. But what can never be overlooked in the case of Alexis and in the cases of other successful autistic people, and successful people with disabilities in general, is that each one of them have enjoyed the support of others who believed in them, cheered them on, challenged them out of their comfort zones, and made personal sacrices of time and even money, to see these individuals succeed. Plus, each one of them benefited from proper diagnoses and interventions. Maybe not at first but eventually.
Believe it or not, when I express my concerns these have nothing to do with Alexis or her success, or the success of any other person with autism or other disabilities. My main concern is that there are those who find it a struggle to feel unmixed happiness for Alexis and her success. This is not because anyone begrudges Alexis (or anyone else) well-deserved success. It is for other reasons having to do with personal experience that is unshared by Alexis or others with autism or other disabilities who have overcome obstacles and "made it to the top." I'm thinking about the families of those with more severe autism or other disabilities whose differences so affect theit most basic functions, that their loved ones are very unlikely to ever be able to even aspire to Alexis's accomplishments. I'm talking about those who are nonverbal or have other significant differences for which they will need lifetime care for the rest of their lives or at least substantial supports. Such individuals will never be able to achieve what our culture defines as independence or success. From time to time, I have seen people in my network, whose autistic loved ones are nonverbal and lack basic self-care skills that limit their functioning, vent anger and even hostility toward those autistic people and families of those with "mild autism." These families no doubt see stories and autistic people like Alexis but know that her success and her story is not possible for their loved ones to ever know. A person in my network, whose autistic child deals with severe problems and a low function, vented one day with anger and hostility: "I see all these posts about kids with Asperger's or 'high-functioning autism' and all these success stories and how everyone is inspired by them. Well, what about MY child who cannot even talk and take care of herself or know what society considers independence or success? My child's autism! Who is inspired by THIS form of autism?! Do you parents who are blessed with your "inspiring" kids with mild autism have a clue as to what parents like me suffer? You do not HAVE A CLUE! Praying for Asperger's."
I'm also thinking of others in the autism community who are members of "the lost generation" who experienced misunderstanding, failure, and even abuse or harmful interventions before the autism spectrum disorders (ASDs) become implemented as a diagnostic tool in the year 2000 or a little earlier. Many experience unemployment, mental health issues, abuse, even homelessness or imprisonment because their ASDs were never discovered then and may remain undiscovered. More fortunate ones found a way to work around their differences and carved out niches for themselves, with the support and understanding of others even with no diagnosis. Myself, I admit that when I think about Alexis or any successful person with autism or other disabilities, I struggle with feeling unmixed happiness for them. Thinking about them, reading their stories and seeing the praise that others lavish on them, triggers in me feelings of sadness that the support and correct diagnoses and interventions that these people have had, were not present for many of us, including me. Reading about them and their successes, also triggers in me feelings of regret for missed opportunities that I no doubt had because I never knew what was going on with me and believed my bullies (peers and adults) who declated that I would amount to nothing. Therefore, while I did not "lose my way" by adopting a self-destructive lifestyle, I did not "find my way" by finding any niche of success. I also feel a measure of loss knowng that those years can never be regained. I know I am not alone. I have seen a few posts even today, by people lamenting the harm that wrong diagnoses and inappropriate interventions have done to them. Beholding Alexis's story is not exactly validating to people who cannot relate to the support and proper help that she had, though she had to wait till 7th grade to get a proper diagnosis.
Then there are the many families and autistic individuals who are low-income or minority and they lack access to the services and opportunties that Alexis and every other autistic and otherwise "different" person has known. All the preparation that Alexis has needed in order to simply qualify to compete to be crowned Miss America, are simply out of reach for many families. While they desire success for their children, they do not have the resources and maybe not the education, to expose their children to opportunties to build on their strengths and master their weaknesses, much less to develop their gifts and talents. Not because of lack of ability or talent but because of lack of opportunity or resources, so many of these children with autism or other disabilities many never be able to aspire to the kind of success of Alexis or others like her. Such families may struggle with feeling unmixed happiness at her success. Families of color may find it hard to ignore the simple fact that Alexis is white, with all that this represents. Racism is far from dead in the US, despite legislation and the fact that the current US President is Black. The abuse that so many heap on this President signifies this, in my opinion. I will not delve any more into the race issue here, only to point out that many in the autism community may struggle with feeling unmixed happiness for Alexis's well-deserved success. The point is that for many families of those with ASDs or other differences, survival is the goal that they are forced to be content with.
This is where my petition's success and the response of Congress and the President to it, can help so many autistic people and level the playing field. Comprehensive services for all autistic people means resources that can empower many to build on their strengths, master their weaknesses and be in the position to develop their talents and gifts. This can make many more stories like Alexis's possible. I have seen some in the autism community cheer that Alexis will bring more awareness to autism. This is needed for many uninformed people, to a point. But all the awareness in the world is not worth much without services and resources for those who need this awareness! The success of Alexis, as inspirational and well-deserved as it is, cannot provide other autistic people with actual opprtunities to similarly overcome weaknesses, build on strengths and develop gifts and talents. Only much-needed are currently often-not-existing services can truly help many autistic people. So by all means support Alexis, check out her webpage that I'm about to provide and cheer her on. But while you do so, please do not forget to support my Change. org petition so that many other autistic people can "reach for the stars" like Alexis.
http://www.missmontana.com
You can learn more about Alexis here.
http://tiny.cc/mrsahw
You can sign my petition also, right here.
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