What we did right

  • Learned “Never too early, Never too late”
  • Recognized the “power of presumed competence” with children and adults with Autism Spectrum Disorder (ASD)
  • Built and kept a network of trusted support, with other family members, people with ASD & professionals in the field
  • Made sure our advocacy organization, the Autism Society of Los Angeles, was not a provider of direct services so there would not be a conflict of interest in our advocacy and we would have more credibility
  • Listened to adults with ASD
  • Promoted conferences and support groups that were affordable, accessible and practical
  • We hired the best people in the country to do an assessment of our son’s program (Jay Nolan Community Services (“JNCS”) and listened to their recommendations.  Looked at our original dream, realized it wasn’t working and started over;
  • Advocated for Supported Living-assisting people with disabilities to live in their own home, no matter what the severity of their disability/autism. This can include life-long supports, 24 hours a day, 7 days a week. These are personalized services that are based on individual needs, interests and desires.
  • In Supported Living, learned and implemented Circles of Support for the person with autism.  Circles are comprised of family, friends, staff and others who are committed to assisting the person realize their dreams
  • Ascertained that one of the major benefits of supported living is that because it is so personalized, the individual with ASD can have the freedom to visit with their family as well as choose other preferred activities in the community. In other words “Have a Life”!! In contrast to a group situation where this is not practical and does not happen
  • Concluded that everyone is ready to participate in Supported Living
  • Learned that being non-verbal is not the same as having nothing to say and that people who do not speak in traditional ways can direct their own lives
  • Realized that although someone has autism, they still have family traits that are similar to their parents and siblings
  • Refocused ourselves to celebrate our son’s gift’s not his deficits
  • Dr. Condon, a psychologist, used film to breakdown behavior and showed how people with ASD aren’t in sync with typical people when they communicate.  Learned to wait for responses
  • Recognized the differences in a person with ASD’s ability to organize & regulate sensory information & internal language
  • Promoted idea of self-determination—all people have the right to determine their future.  This is happening and being funded throughout the country
  • Focus on relationships, friendships & communication
  • Determined that the power in California was with legislators & legislation
  • Realized power of class action lawsuits & legislation
  • People First Language—more than just words.  People First puts the person, their ability, their value in the community before their disability (i.e. our son Shawn, who has autism vs. our autistic son Shawn).  People are not defined by their disability. Respect all people.
  • Understanding “CHOICE” for a person with severe challenges while at the same time acknowledging health and safety issues
  • Recognized, early on, the importance of California entitlement legislation, while never fully funded.  Uses SHALL not MAY.  Wisdom of entitlement—clear principles, and plus affirms legal protection and rights
  • Concluded that  a closed environment does not create natural friendships
  • Strong advocate against any treatment or services that dehumanize, are inhumane and diminish the dignity of the recipient and administrator.  We oppose using pain as a means of treatment
  • Tried to keep a sense of humor about everything
  • Acknowledge the importance of effective PR (public relations) media and films.
  • Learned and understood that there is a “code of silence” in programs.  Staff does not tell on other staff so abuse can go unreported
  • The importance of creating a “Family Caucus” with legislators who have family members with autism to deal with important public policy issues