"I thank you again for this honor and for the privilege of explaining my journey to you. And for sharing the excitement of your graduation and the journey you are about to embark on. Trust your instincts. Go with your gut and follow your heart!"
Trustees, Faculty, Graduates, Family and Friends – Congratulations to the Class of 2019!
In the early 1990’s I went back to school to become a social worker after a career in commercial design, raising my children, serving on a board of education, and negotiating school systems for my son. He had significant difficulties in school and all social settings. He was extremely isolated, bullied, and misunderstood by all, including the educators and professionals we looked to for assistance.
In 1994 I received my Master’s degree in Social Work from Adelphi University, coincidentally, the same time Asperger syndrome became a diagnosis in the DSM, which is the Diagnostic and Statistical Manual used by health professionals to code mental and developmental conditions. Meanwhile, our son, a brilliant, sweet 25-year-old who had excelled in mathematics and shined in all of his high school and university courses was struggling immensely in all other aspects of his life. Most sadly, his inability to cope with the organizational demands of being a graduate assistant and the social demands of team engagement, dealing with other students and colleagues resulted in his shattered dreams of a Ph.D. and professorship.
Indeed 1994 was a landmark year for us all because he was able to finally receive an appropriate diagnosis of Asperger syndrome, and we also gained an explanation for his struggles and our many questions. But we had no clear path to follow – so my life turned to forging that path: For our son, our family and for others looking for answers.
What I found was that Asperger syndrome (now called autism spectrum disorder) is a ‘hidden disability’ affecting individuals with average to above average intelligence. This disability often includes, along with developmental delays, sensory issues and problems with social awareness, often made more severe by co-occurring issues such as anxiety and depression.
We live in a world where there is a “hidden curriculum” of expectations. You’ve all heard the expression “Everything I needed to know I learned in Kindergarten?” Actually, when you got to Kindergarten most of you already knew instinctively what your friends with autism had to be taught, like making friends and taking turns. People with autism tend not to generalize from one situation to another so these lessons need to be taught and retaught, no matter how intelligent the person with autism is. And this makes life extremely challenging.
I also learned that schools of Education, Social Work, Psychology, Nursing, and Medicine largely do not equip their students to understand autism.
And most people do not understand that whatever population or discipline you serve, you also serve autistics. They’re not silo’d somewhere in another area of study. They’re in every practice setting, and sadly, because of the lack of training, they are often left misunderstood and floundering. Few people know how to work with them, and even fewer are taught what happens to them as adults.
Through my involvement and leadership of Asperger Syndrome and High Functioning Autism Association, and my extended work as an adjunct at Long Island University and Adelphi, we went about educating educators, healthcare professionals and families. Eventually, the children with an Asperger profile became adults and their voices began to be heard in books and other media, making an impact on the greater community. Some include Dr. Temple Grandin, who made a significant impact in the humane treatment of cattle across the world, Dr. Stephen Shore, a professor at Adelphi who presents internationally, John Elder Robison, and Dena Gassner. All are authors, presenters, sit on numerous national committees and work with the National Institutes of Health. All had significant challenges, some had no language as children.
Our first goal was awareness: by educating people through conferences, workshops and support groups. This information became available to classroom teachers, family members, and professionals hungry for practical knowledge and strategies about the students and clients with whom they work.
We soon realized that awareness was not enough. Acceptance was needed. Acceptance comes from a place of understanding. So that had been the goal: To train professionals, and help families and individuals gain a solid understanding of self, self-worth, and tools for advocacy and self-advocacy. And in that process to help people live as independent or interdependent a life as they are able.
Lastly, our community seeks to help everyone understand that autism is intersectional; that with a strength-based approach people can achieve their own personal success. As my colleague Dena Gassner reminds me, intersectional implies that autism and autistics can be found in all populations and situations including the most vulnerable, like – LGBTQ, domestic abuse, chemical dependency, veterans, the homeless…..autistics are there too.
My work extended to support groups and conferences spanning multiple areas and issues such as the importance of early diagnosis, under-diagnosis of females on the spectrum, treatment for neurodiverse couples, employment and housing issues, and debunking false claims of magic cures.
I am proud to have participated in the founding of Westbrook Preparatory School, the first NYS-approved residential school on Long Island for fragile college-bound teens with autism and co-occurring conditions, as well as numerous other projects I have been privileged to be a part of.
Dr. Stephen Shore, is often quoted as saying “When you’ve met one person with autism, you’ve met one person with autism”. Don’t make assumptions about an individual on the autism spectrum. Get to know them. Find a common vocabulary. Give them time to respond. You will find some pretty interesting people may enter your life.
As Hans Asperger was quoted to have said, “For success in science and art a dash of autism is essential”
I thank you again for this honor and for the privilege of explaining my journey to you. And for sharing the excitement of your graduation and the journey you are about to embark on. Trust your instincts. Go with your gut and follow your heart!
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