I recently created this mandala, which ended up becoming a cathartic, stream-of-consciousness way for me to express some of my current feelings about raising a bright and talented son who has autism.
Autism, in Matthew’s case, seems to function as a buffer between the outside world and his experiences of himself as a living, breathing, emotional being in the world. To that effect, his demeanor can sometimes seem abrasive, or obstinate, and because he is so very intelligent (and often amazingly sweet!), these less-desirable social behaviors are perceived by others to be deliberately off-putting, when, in fact, BECAUSE of his AUTISM, he can become too overwhelmed by others’ social expectations of him to be able to respond “appropriately.”
These days, we are facing the exquisite challenges involved in supporting a teen with autism’s transition into adulthood. While many of our son’s peers are preparing for their futures in typical, socially-proscribed ways (i.e., applying to colleges, and beefing up their portfolios with “desirable” skills and experiences), Matthew does not seem to identify at all with the processes typically involved in this phase of life. BECAUSE of his AUTISM, the usual protocols that most youths growing up in a privileged society just seem to be able to “get” innately, are inscrutable to Matthew. Yet, as nothing about our son is typical, it certainly follows that his path to adulthood will be every bit as unique as he is. He will be breaking new ground in unprecedented ways, for sure, but he will also need a lot of support, patience, and tolerance from others as he makes his way.
At this juncture, it is really difficult for me as a parent to envision how things will all pan out. What I do know for sure, is that we will not be able to provide Matthew with the resources and support he needs and deserves alone. These are some of the questions I’ve been considering in my attempt to achieve a bit of clarity:
- How do we help Matthew navigate this new territory in a way that will be empowering for him?
- How do we help him to find his “community” (not necessarily only others with autism, but any caring, genuine, enlightened people out there who have the capacity to appreciate and make room for difference)?
- Where are those places and circumstances, where Matthew’s ways of seeing and being in the world will not just be tolerated with sighs and rolling eyes; but will actually be embraced, because they are optimal for developing ideas and creating exciting possibilities for the world?
- Who will be bold enough to step into Matthew’s world — to meet him there, in his element, where he thrives, feels grounded, and responds innately and effortlessly to the minute mysteries and details that most of us would never even perceive — instead of always requiring him to step out of that world that sustains him?
- Who will be brave enough to push themselves far enough beyond their own comfort zones, to begin to comprehend the manifest discomfort my son endures in every waking moment of unavoidably inhabiting a world that has always denied him approval for who he is?
- Who will love and accept him enough to become his tether to the world, to be the solid rock of “YES!” in a raging sea of “NO!”?
- Who will help us build Matthew’s house on that rock?
Finally, I would like to express my deep gratitude for Matthew’s mentor and human being extraordinaire, Jenny Forrester, for teaching me the “mind map” exercise, which helped me to generate these questions.
~SLH, March 25, 2015
*Text from artwork above…
HERE ARE THE FACTS:
- I knew there was something different about my baby boy the moment I gave birth to him almost seventeen years ago.
- My world is richer, more complex, and more beautiful than I’d have ever known if not for seeing it through his eyes.
- Matthew is so full of life and passion. He desires connections, and wants to share parts of himself with his family, his friends, and his pets, and he pours his soul into experiencing the earth’s beauty and majesty. He wants to love and be loved, but he feels alone. 😦
- Matthew cannot understand the seemingly arbitrary rules, expectations, and emotions that neurotypicals take for granted. His brain is wired for different ways of thinking, observing, and feeling.
- He realizes that others don’t care to understand his world — and he resents the double standard. Rightly so!
- The pieces of Matthew’s world are shattered, scattered, compartmentalized, confused, and incongruous with what the world values as “normal” and “acceptable.” Misguided attempts to teach and integrate him have amounted to veiled threats of punitive consequences for refusal or inability to conform to a society that patently disapproves of his essential nature, and does not tolerate the outrage and frustration of those who must endure constant negation and neglect.
- But my marvelous son is a survivor! He has not let the system utterly defeat him. He is learning, growing up, developing interests, and pursuing a tenable existence in a world that also needs to grow up!
- Matthew is beautiful, brilliant, and precious. His differences are not faults. He deserves to be the perfect human being he is! It is not his duty to make himself “right” for the world. It is not his job to make the pieces fit. The WORLD better start making itself “right” for him!
Stephanie L. Harper, Proudest Mom in the World!