The Autism Society Event and Education Recordings Archive

The "5 Keys" was written as a simple way to describe a complex process of self-understanding and acceptance, leading to self- determination and an active self-advocacy effort (that included meeting with President-Elect Obama) to inform and educate leaders about the desires of individuals on the autism spectrum to be involved with the choices in services that are definitely needed now and may be developed in the future.

The Key is CARE

 

Self Advocacy begins with Self

Based on the article The 5 Keys: Opening Doors to Better Understanding of Individuals with ASD, published in the March-April 2008, Autism Asperger’s Digest

By Ruth E. Snyder

When my son was first diagnosed with Autism the diagnosis was not a shock or devastating, it was instead enlightening and a relief to finally understand a life time of challenges; not his but mine.

The doctor waited at least one month before informing me that I too have Autism. I now realize it was to make sure I was not going to react in some way negative or perhaps become self absorbed in my diagnosis instead of how to help my son. I had no way of knowing why he chose to wait to tell me about us, but he worked with us over a year before the word autism was directly connected to us and the formal diagnosis.

One medical professional spent over a year of discovery with me before telling me the truth. Over a year of a professional relationship specific to building trust and understanding, developing respect and allowing me to discover the truth about Autism and our past; the medical, social, academic, professional, and of course emotional challenges of a life time that never made sense until the diagnosis of autism. A diagnosis being sold as a devastating disorder literally saved our lives in more than one way.

All of this was because one professional was willing to work with me, instead of just work on my symptoms. This process of self discovery is rather well known to professionals from England and trained as disciples of Dr. Lorna Wing; Tony Atwood speaks on topics such as this all over the country at least once a year, but still our experts did not even acknowledge Asperger’s (doesn’t even work on spell check) until 1994 when they finally put it into the book for professional reference other wise known as the DSM; the medical category of psychiatry.

My functional friends; or network of adults on the spectrum promoting self advocacy, also tell their stories of self discovery; like Michael John Carley, Lianne Holiday Willey, Jerry and Mary Newport, as well as so many more ( references to be cited for power point and hand outs).

The most famous of Autistics could arguably be Temple Grandin; Emerging Labeled Autistic, and Thinking in Pictures, explains how she thinks in pictures and as the ASA and others in the Autism world exposed her insights to the public we all played a very important part in her path of self discovery simply by asking her to write, tell her insights, and then come to speak. By inviting her to share, accepting her as she was, and encouraging her to share more, you all helped her discover her self.

Those of us slowly being recognized emerged begging to be embraced like Temple, yet also recognizing we are not EXACTLY like her. We looked up to her for hope, help and advise, she developed over the years and we all began to put an image to the possibilities and hope for children labeled Autistic. She is only one image of the hope that I have seen from the truth I have learned during my self discovery.

But each one of us must go through that process of self discovery before we can become educated self advocates. Not all of us want to be writers and speakers. Not all of us want to share our stories with parents and professionals or let the world know our diagnosis. For that reason the peer run support groups; on line and in person, like GRASP, AAGW, ANI, have begun filling a need that the professional world could not imagine. Here in Illinois the adults seeking self understanding have created other networks on line to integrate with the social in person meetings, they did this for them self and by them self.

This self discovery does not have to be self directed, but we are learning at a faster rate than many people once believed is possible and for that reason the self discovery cannot be tainted with pressure or confusion related to communication discrepancies among professionals or our growth will be delayed even longer.

During the formal process of diagnosis for my son I often would look at the examiners and ask “which son of mine are you talking about” because the boys were exactly alike, but it appeared in opposite ways. For me having this variation of the Autism Spectrum within my own family and under the same roof was in my opinion a gift. Having met many adults during the discovery aspect helped me comprehend how this spectrum is not linear like a drawing of the rainbow or the puzzle pieces in the ribbon. The spectrum of Autism, like the spectrum of advocacy, does not have bold boundaries that can easily be seen by the untrained observer. The boundaries, the limitations, the abilities, are sometimes felt more than seen. The one thing I learned about these limits and boundaries is that the multidimensional aspect means there is no room for comparative measures.

Self advocacy begins with self acceptance or understanding but it is fine tuned and best when it is balanced with knowledge and acceptance of both.

This presentation will build a foundation for a life long education in self advocacy for the individuals on the spectrum and those that care to learn to help develop healthy relationships with people on the spectrum.

Learning Objectives: