A Tipping Point in Autism: a message from the Founders of the Art of Autism

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OLYMPUS DIGITAL CAMERA

A Call for Constructive Conversations with Each Other and with Ourselves

By Keri Bowers and Debra Muzikar, Co-founders, The Art of Autism

A tipping point: “The moment of critical mass, the threshold, the boiling point.”

Together, we have a combined 48 years’ experience in our roles as “autism moms” and autism advocates. Over those years, our sons, Kevin, now 21, and Taylor 27, have given us profound insights, experiences, joys and sorrows in our chosen roles as advocates.

For you, our collaborators, friends and followers, we hope The Art of Autism has been a positive experience in enjoying a space and place for creatives to share art, blogs, poetry and other inspirational insights. For us we are always inspired by the quality of art, poetry, books for our review, music, videos, and blogs that are submitted.

With over 500 autistic artists from all over the world who participate in the Art of Autism project, we appreciate each voice, idea and value shared over the years. Even when we have not necessarily agreed with or endorsed a particular point of view shared, ours has been an effort to honor diversity and differences. With the effort to share differing perspectives also comes responsibility.

Like any other forum, publication or blog, The Art of Autism, is reasonably selective in what we share/post. We endeavor to be open-minded and share things of general and artistic interest, while striving to promote autistic voices, parents, professionals, and others.

To that end, and in honoring diversity – the very foundation of the autism acceptance movement – we also honor each individuals’ right to interpret and absorb our blogs and posts differently. We do not, and never will endorse or engage in hostility, rage, or angry assaults against others with whom we disagree. We view The Art of Autism and The Autism Shift as conduits to positive interactions, conversations, opportunities, projects, advocacy and education.

This past year, in ever-changing times in autism and social media, our work has become increasingly more difficult. Navigating autism in current times feels like walking on proverbial egg shells with land mines beneath. We simply never know when we might unintentionally upset someone(s) with a word, a blog, a post, a meme, or even a photograph.

The Seeds of AoA; The Back Story

Historically, what you may not know about The Art of Autism is that Kevin and Taylor were the original seeds of inspiration behind creating this forum. With all the challenges of starting and developing an organization, from the beginning they inspired us behind the scenes to do what we do to keep it alive and growing. They were/are a constant reminder of our purest intentions.

Although the project has provided us much inspiration and joy over the years, there have been times that have been less than joyful. In those times, we have developed a close working relationship. We hold each other up when one of us is weary. We keep each other accountable. In times of stress, we remind ourselves to be mindful of spiritual practices, and to maintain The Art of Autism’s integrity. Yet this is not always easy.

Staying the Course

Staying the course – even when difficult – is how we raised our sons. When our sons were boys, long before adulthood, in our own little corners of the world (only miles apart from one another), we experimented with the arts as creative forces to develop their ability to self-determine, experiment and find expressive outlets for their literal and figurative voices. We used spiritual principles in our respective homes to guide our efforts. We pushed lovingly but firmly so that they would find as much expression and independence possible in their lives. Mostly, we never gave up even when doing the right thing was harder than doing the easy thing. This continues to this day – even now as they are both adults.

A Critical Mass

So yea, this past year has been difficult behind the scenes at AoA. Our ability to share things you and we care about has become mired in a new(er) phenomenon in autism – a social and political divide – which seems is only growing.

Malcolm Gladwell, author of the best seller “The Tipping Point: How Little Things Can Make a Big Difference” defined a tipping point as “the moment of critical mass, the threshold, the boiling point”. So we are calling this time in autism a tipping point; a point at which we need to make difficult decisions about who we want to be as a global community.

Whether it be divides in beliefs about vaccinations, intervention practices, insurance reform, employment and housing issues, abelism, Autism Speaks, parenting techniques, the puzzle piece,  – or even calling ourselves “autism moms” (now not okay by some standards), each of us in the global autism community is more and more, affected by polarizing values and beliefs.

Late last week, Suzanne Wright, co-founder of Autism Speaks, passed away. While we saw waves of condolences in social media, we also saw a backlash against her even in the tragic time of her passing. This causes us to ask ourselves how this makes the collective ‘us’ more accepting, compassionate, more human as we seek to create – and even demand – autism acceptance.

This critical mass makes it harder and harder for everyone and anyone related to autism to interact with the daily work of raising kids, sharing ideas, and growing together in autism.

So now we ask as your personal tipping point to consider this: how are your actions reflected in what you experience in your world? At the Art of Autism, we wish to incorporate the following awareness into what we do on an everyday basis.

–    We will encourage The Art of Peace. As an artist, advocate, or simply a human being, we will do something each day to make the world a little brighter.

–    When we make someone or something else wrong, we will remind ourselves or each other that our actions gives others permission to make us wrong.

–    We will practice The Art of Actively Listening to others

–    The Art of Active Listening, does not always imply agreement. We will allow others to have their points of views. We do not have to like or agree with – or even need to be friends with everyone. We will remind ourselves that differences are not an excuse to attack or harm others.

–    With advocacy comes responsibility. We will strive to become more informed, respectful advocates.

***

Please feel free to email us or comment below. We are grateful for our participants and the feedback from our readers.

7 Comments

  • I thought your message made great sense. One caveat: active listening is a huge challenge for autistics, even what some people call “high functioning” autistics. I know I have great difficulty with it myself.

    Is there something you have found effective to help with that challenge? And is there some way for us to help remind “NTs” that they should NOT interpret autistics’ failure to “actively listen” as reflecting rejection, contempt, anger, or any negative intention?

    • keri bowers says:

      we ompletely agree, and we will work on a post to make sense… In a format of 1,2, 3, 4, 5 steps to active listening. Thanks for your valuable feedback. We heard you (and even discussed you) on the phone. Were your ears burning tonight?

    • keri bowers says:

      Claudia… Having just seen your question, I’m sorry for the delay in writing. There are several techniques, the simplest being to say to another “So, what I heard you say is (fill in the blank…) This is not something one might do over and over in any given conversation, so it is a practice needed wherein good friends/family can be utilized (to practice on) in order to get to a point where the parts of someone’s conversation with us that are not absorbed or that seem to be important to another are repeated, and thus actively heard. This brings us then to the question: how does a person know when something is important to another – or might be important to us – when they/we cannot read faces or “hear” intonation? This is also the art of practice; generally working actively with autistic kids on this will support and serve them better as adults. Yet, like the rest of the NT world, not everyone cares or wants or is able to actively listen, and certainly doesn’t see or understand why practice becomes a good tool. :>)

  • nirith avraham says:

    For me and my son Neri, the Art of Autism was about the connection to others to those who want the same things for our children, to thrive to make a difference, to bring light into this world , beauty and to create a shift , a shift in the perception out there.
    We all became stronger because of them , they showed us the way , and how we should be , generous and kind and empathetic ; they show us what it means to give, to love and support each other , even with just kind words, and be able to listen to each other when needed .
    I am honored to be part of The art Of autism ,and thankful that my son Neri had so many opportunities to shine . Regardless what we believe in, as far as how to advance them , helping them to be more independent and accomplished individuals WE ALL BELONG TO THIS LARGE CIRCLE a circle of friendship ; I thank you both for creating this circle ; Soon Neri and I we are leaving the country , as we return to our native country , but no distance will change what we created and I see it only as an opportunity to enlarge this circle and to make larger waves of beauty and kindness and love. Truly yours Nirith Avraham ps: Neri will continue to generate generosity on the other side of the ocean and for everybody eyes to see .

  • mike lutrell says:

    I really appreciate all the information that I have learned reading this blog. Some of the poems have inspired me and the stories, artwork and self penned personal accounts resonate deeply with me.

  • linda schorin says:

    What a beautiful, wise,and meaningful post. We all have to remind ourselves of these issues and ways of being in community and the world. I wish this kind of caring and respectful approach could become a part of the political discourse as well. So much damage is done when it is not. Thank you Debra, and Keri for reminding us of what matters and for having created this amazing organization.

  • Angela says:

    Thank you so much for your website and your work. I am a person with a disability and I have worked with young adults with autism at a special needs school so I understand the challenges you face from working with my former student’s parents and as a person with a disability that has advocated for others with autism for the past 15 years. I find your website very inclusive, non-judgemental, and informative. I understand the responsibility you have being in a position of making information available to the public and being mindful of the individual needs of everyone effected by Autism. I dealt with the same challenges as a special education educator working in a organization with many other professionals, students, and families with many different needs and challenges. Thank you for all you do and keep doing it.

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