What we did wrong

  • Isolated, categorized and segregated children & adults on the basis of their disability
  • Punished people with ASD for their disability, i.e. when a child did not give eye contact or had self stimulatory behavior.  Programs were all about control and restraint
  • Universal message throughout ASD childhood “you are broken and we need to fix you”
  • Talked about my son in front of him as if he wasn’t there or didn’t understand
  • Because of our ability to access resources and because we were both professionals, we could find “the state of the art” best practices at major universities and just assumed it was the best, even though it was based on using aversives (physical pain as treatment)
  • We didn’t spend separate time & vacations with our two other sons
  • Believed fancy words and great IEPs (Individual Education Programs) actually would translate into reality.  Plans do not equal follow through; action does
  • Programs and plans were assessment driven, i.e. IQ scores predicted educational services, placement, social and future living arrangements.  Often those standardized tests were totally inappropriate, invalid and unreliable.  Shawn was given an IQ score of 31 and described as a much younger child—acts like a 2 year old at 8 of 9 years old
  • Continuum—you have to finish A, B & C to move to D.  You have to “get ready” to be allowed to move on
  • Allowed communication differences (mute, non-verbal, echolalic) to define that person, i.e. severely retarded, isn’t interested in people or learning, isn’t interested because they are not listening to us or looking at us.  It wasn’t that they didn’t want to communicate, it was they couldn’t in typical ways
  • Stopped dreaming—just wanted to last and get by another day, another year, another milestone
  • Once diagnosed, needed to act fast, fill his every moment with strict behavioral therapeutic interventions.  Extreme sense of urgency—especially during his early critical learning period.  Every minute was precious—can’t waste time.  This panics everyone, especially your family (siblings, husband, etc.)  No time for relaxing or fun.  Have to be programmed 24 hours with absolute consistency!
  • The label of autism—supposedly defined everything about that person—it dehumanized & all the descriptors were negative/defective.  We now know that labels back then & even today are not “absolute pure science” and often have been invented knowledge, just look at the DSM-diagnostic manual often worshipped and immortalized by diagnosticians, who constantly change definitions which do not seem to be based on true science. Remember the person who developed the Lobotomy won a Nobel Prize!!!
  • Aversives—the use of physical pain/punishment created post traumatic stress syndrome in individuals who are treated with this behavior program.  My son still says when he is anxious, frustrated or angry “no hit me, no pull hair, bad boy, this is a no!”
  • In education, work and living arrangements, there is not real support or understanding for functional augmentative communication
  • We did not understand the importance of relationships in our children’s everyday life—including school and work
  • Extremely naïve about the true reality and function of task forces, reform initiatives, studies, mission statements, advisory committees and pilot projects.  So often it is a way to delay much needed action.  Cheaper to fund a pilot project than actually have a comprehensive solution
  • The word “community” can be really deceiving.  Located in the community does not necessarily mean a person is with or part of the community
  • The word “empowerment” actually  meant giving power to the bureaucracies-not families and individuals with ASD.
  • Thought that one model would fit/be appropriate for everyone
  • Tried to be an open-minded, positive, supportive parent with professionals and interventions when deep down felt what was recommended was inadequate or inappropriate
  • Not being able to accept from professionals “I don’t know”
  • Spoke about independence when I should have promoted inter-dependence
  • Thought the behavior my son showed was autism. We didn’t realize it was communication and sensory issues.
  • Fearful of criticizing administrators, programs, teachers, therapists, etc.  Worried they would take it out on my child.  Didn’t realize you can be on the cutting edge one year and part of the problem or mediocre the next year
  • Inclusion/integration without the appropriate support turned into dumping
  • Group homes were a tragic failure.  Even though that was our dream when we began to look at residential services
  • Kept looking for a “captain” of our team for our son, when what we needed was a circle of support with many individuals
  • Didn’t realize that individualized plans did not mean personalized plans
  • Poly-pharmacology—over medication.  Didn’t recognize the physical/medical. gastro-intestinal issues nor understand that the over use of medication was cheaper and easier than implementing comprehensive and appropriate services and supports. In addition, understanding that individuals with ASD are subject to the same ailments as the typical population… allergies, ulcers depression,etc.