Breaking Barriers

Perspectives from the trenches of the special needs world

Nurturing Dignity

Moving beyond the debates and sparking a revolution in Autism!

Debate over Autism treatments abounds. Seemingly endless conversations pervade all corners of my professional life disputing which treatments are effective, which ones work, which ones do not, which ones exacerbate, and which ones alleviate. I hear people argue, more often than not, with an adversarial and contentious tone, perhaps because the precise cause(s) of Autism are still largely unknown. It is not only diet and nutrition, or only behavioral therapy, or only this or just not…THAT! I fully recognize the importance of intelligent, respectful discourse over potentially beneficial programs, medications, and treatments. Many parents and professionals wean hope from these discussions as they are able to leverage their own knowledge, experience and instincts in such a way as to hone in on what they think might work for their child or student. However, the undercurrent to these rising tides of debate is the real issue. The fundamental piece that gets lost in the conversations is that, no matter what biomedical treatments are administered or which therapies are undertaken, there is a whole child who needs our help. Our children have no time to lose, so no matter what side of the debate(s) you fall on, we should all agree that enabling a child to become their true self and a productive citizen of the world is the real conversation we care to have. New treatments and methodologies will come and go, but it’s up to us to filter out the practical and the useful from the superfluous. We must come to a better, collective understanding of how to treat Autism, but also nurture dignity in those whose voices are rarely heard above the raucous din of a community at odds. Let’s start listening to our children and the science (of which there is not nearly enough, but that’s another post entirely). Let’s start a new conversation. One that answers the question: How do we help now?

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We are not calling for stagnation or myopia in our opinions. We are not calling for an over-simplification, but rather are asking for an evolution or a revolution in the way we think and grow with this term “Autism”. We can no longer stay in the muck and mire thinking, “I am right. You are wrong.” We have to help one another pull our collectively stuck boots out of the mud and move to firmer, higher ground. The story of Autism is unfolding before our eyes: 20 years ago those affected were “invisible children” to society, as Susan Sonkin, Director of CEED in New York, recently told me. Now the term ‘epidemic’ is being thrown around frequently. Autism has changed in myriad ways for all of us. We must now change how we help these children and young adults. New neuro-imaging techniques, cutting edge research and development of technologies, increased awareness and understanding, tireless advocacy on behalf of children and adults with Autism are all creating this new foundation, to which every piece of the puzzle matters. Enough of the adversarial attitudes and the sweeping generalizations! Every individual’s Autism is different, which is the exact same reason it can be such an elusive term. As Dr. Mark Frelich of Total Kids put it succinctly, “Autism is really an umbrella term for co-morbid diagnoses.” An individual profile requires individualized treatments. Anything else, any blanket or isolated approach is simply a waste of time.

As a special educator I am driven to help our students and as a human being I believe in what we do at our center, our approach, and how we help our students and families. At our center the proof is in the pudding, so to speak: students are thriving under a dynamic, multi-strategic, collaborative, and data-driven approach. Regardless of the diet of my children, or their biomedical regimens, or of the methodology of their day-school program, our students are consistently and continuously responding positively to our model. This is not because we have some silver bullet or magic key. The students’ entire program and all the separate components of it work in conjunction with one another to foster learning and progress.

Students with Autism are chronically underestimated and misunderstood, but if you don the badge of honor and the funny hat, you as a Behavior Detective can start to listen differently and discover what our students tell us every day: they are hungry to learn and they burn to connect with other people and aspire to know the world around them. It is our job to uncover those wishes and help nurture that freedom to explore and to understand. We have been fortunate to have learned from the best in all relevant fields of study and have expertly adapted that knowledge into a fluid, synthesized program that complements whatever else is going on in that student’s life. The primary reason students at Emerge & See flourish is because both the professionals and the family are working together to address all the needs of the child in all areas of functioning (emotional, social, academic, physical, etc.). We build programs from the ground-up to the exact specifications of each individual student. When they come to us we create a program for them; we don’t force the square peg in the round hole. Furthermore, when that peg changes shape (the child progresses) we adapt the hole creating a continuous and perfect fit. Our program is, necessarily then, exceedingly flexible in its ability to interpret and act upon a child’s needs. We have a unique ability to apply all of the tools at our disposal, no matter administrative restrictions (we are our own bosses) or the politics of choosing one methodological camp over another as many schools and organizations are forced to do. These camps are not rival factions; they are educational models that work brilliantly for some and not for others. It doesn’t matter what makes us as professionals ‘look good’ or what the hot new therapy of the week is. All that matters is that we provide those things that help a child.

Dignity is a funny word and sadly, one we often don’t use in education, especially special education. I’m not exactly sure why, because any teacher will tell you that they help their students achieve a state where they can be true owners of themselves and to feel dignified in that. We foster independence. We instill confidence. We impart and inject inspiration and love. We give them support and equip them with every tool that they need to go out into the world and conquer it. Dignity is a word that is lost from all our arguments and debates. The arguments over effective or necessary treatments are striated and disjointed, exposing one major, fundamental point of failure in our educational approach to autism: the current treatments rarely take into account the whole child. Some look at the neurological functioning, others the gut. Some treatments look only at externally exhibited behaviors while others focus solely on the internal emotional world of the child. Yet, there is a whole child there. So why would we neglect any piece of the educational puzzle that will help that child? Because mine is better than yours? I don’t think so and our kiddos don’t think so either! Guilty parties throw their weight around, politicizing discussions and, in turn, deflecting decisive action. These arguments, and the individuals or groups that perpetuate them are stealing time from children and hope from families. They are confounding and diluting issues that are already complex enough. The intricacies of navigating the sea of services and trove of therapies available can be learned and triumphed over, but the incessant and annoying chatter must first stop. The only “right” avenue or program to pursue is that which helps the child thrive. “Right” is whatever works to help a child claim the dignity that comes with having choice, freedom, independence of thought, and control over the mind and the body. “Right” is the choice to do with your body what you want, and not be victim to impulses, compulsions, or pain. The mind should be free to think thoughts that are productive and meaningful, thoughts that connect you to something greater than yourself.

Autism can be unpredictable and elusive, painful and difficult, but it is also beautiful and wonderful in its own way. As someone who works with it and explores it every day, I can wake up easy each morning knowing that I’m going to impart something vital to my students. I will help shield them from the debate and the drama. I will immerse them in the E&S belief that you can achieve anything; because every child can learn. No matter what comes, we will help these children and young adults become whomsoever it is they want to become, no longer trapped by unwanted behavior or isolation, silence or misunderstanding. A new day is here. So, ask yourself and leave a comment, tell us…how do you nurture dignity?

 

Alison Berkley, MST, is the Director and Co-Owner of the Emerge & See Education Center in New York City.

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