Michael has been my greatest teacher, inspiration, and impetus for the work I do, the second greatest teacher has been my daughter Mollie. I could tell you stories of difficulties that we experienced during Michael’s life journey, but what really is most important is where we are today. Today, Michael’s life is a balance of community life at home, work, and recreational opportunities with paid staff and family.
The supports in Michael’s life have been a mission I have needed to take on; the creation, development and training of strategies and supports to meet his ASD and SynGap1 Neurological needs. I would like to report that those community services are here in our community, but alas they are not.
The Early Years
For example, during Michael’s educational years, I developed and coordinated a Regional Autism Consulting Cadre for 11 years. During that time I was able to bring in local, state and national experts in the field of education for students with autism. The purpose of the cadre was to build communities of autism specialists within the 10 school districts that participated. The cadre was known for its “Focus on Autism” state conferences and annual six week training series throughout southwest Washington. The intent for this effort was to provide teachers and paraprofessionals with ASD focused teaching strategies so that Michael would receive the free and appropriate public education that he needed and deserved.
During summer months, I developed and staffed a local Extended School Year (ESY) Program, matching adolescents with autism from four school districts with near peer age supports (college students). This ESY program worked on academic goals identified on their IEP and provided community based instruction with a focus on social-communication skills so that students would not regress during the summer months.
The Later Years
When Michael reached transition age, he started with a new teacher. Unfortunately the teacher wanted Michael and all the students to adapt to her teaching style (verbalization and compliance teaching) that were and still are contrary to Michael’s visual learning style. After three meetings with a cast of thousands (bit of an exaggeration), I presented a proposal to the school district’s Special Education Director. The plan would provide Michael with a Community Based Instruction program that I developed; providing communication and self-help skills, community activities and work experience based on Michael’s talents, gifts and strengths for less of the cost of a full-time para-professional.
In the meantime, I was one of thirteen families in our area working on a Companion Home Residential concept. The concept would provide a “host” provider who would live with an individual with autism (Michael) 24/7/365. It took six years, and by then Michael was old enough for the service. It required developing a non-profit (501c3) agency, advocating with our state’s legislators and finally getting one of our senators to champion our cause. We then applied for the RFP and were awarded the funding to create “Autism Community Services.” The companion home provider working for Michael is contracted and paid through our state’s CMS waiver. Michael’s provider receives respite based on Michael’s individual plan of care, with continual involvement and support from his dad and me. It works more like an extended family or small village of support.
Michael also participates in supported employment, career development service through our county’s Developmental Disabilities Day Program. For example, he volunteered at a local fire station, providing “rig-inventory’. That means he is gets into the cab of the fire engine and takes inventory of supplies that need to be there. He liked this job, but it’s not paid. I would love to see Michael in paid community employment, but as it stands, we just recently started with a provider in our county that has the level of expertise in strategies and supports that Michael needs—but we have a long way to go.
Next step, create standards of practice for Washington State Developmental Disability Administration contracted providers who support individuals with classic autism. Why am I doing all of this? It’s for Michael, so that he can have a happy and health community life, one that supports his rights and dignity as well as every other person with an ASD in the state of Washington.
As an autism consultant, I see the worst case scenarios for adults with autism, which keeps me awake at night. Michael’s supports currently hinge on my activism, advocacy and training. I cannot leave that responsibility to my daughter Mollie (co-guardian) at the level of advocacy I currently provide. This isn’t rocket science; what it is instead is a service system that is willing to change to meet and respect the human rights of individuals with autism.
This timeline represents my son’s life with autism, how his year of birth parallels the evolution of education and community for those who experience autism and other developmental disabilities.
This illustration is the best way I have of showing you my journey through my son’s life with autism the past 30 years. It also helps demonstrate the work that families who have children with autism face, along with their desire to build better lives for their sons and daughters and not settle for the “status quo.” Many of these families lived and worked by this quote from Margaret Mead:
Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.
The mothers who hold great importance in my journey with autism and developmental disabilities started with the “Refrigerator Moms,” the mothers that fought against Bruno Bettelheim’s theory of autism. I had the opportunity to see them in a panel presentation at the 2007 Autism Society of America Annual Conference titled “Mothers from the Freudian/Psychoanalytic Era Respond to the Documentary Refrigerator Mothers”. Among them were:
Ruth Sullivan, first elected president of the ASA in the 1960s, founder of the Autism Services Center of West Virginia and a long-time advocate for the rights and advancement of autistic people.
Eustacia Cutler, mother of Temple Grandin and author of A Thorn in My Pocket, who read excerpts from her account of her experiences with the psychiatric profession while raising her daughter, who is a well-known autistic person and a very accomplished professional.
Mary Flanagan, long-time advocate and crusader for the rights of autistic people in New York and one of the subjects of the documentary who spoke of the damage that the Freudian era did to families. The four mothers led the panel discussion before a full house of parents and professionals. http://www.pbs.org/pov/refrigeratormothers/