The State of the State of Autism 2014: Fitting the Pieces Together

As the ball dropped and 2014 was officially rung in, my first thought was, “More Americans with Autism will have access to important, life- changing therapies than ever before!”  My second thought, after a heavy sigh, was, “It’s not enough.”  There is so much more work to be done.  Autism as a community of individuals, both those who are on the spectrum and those who love those on the spectrum, has struggled to find a clear voice.  Ironic?  Perhaps.  But the time to come together is now; the time to be clear, concise, and direct is NOW!

We must be clear with our lawmakers and with ourselves on 3 crucial points:

  1. Quality ABA must be made available for all individuals with Autism Spectrum Disorder (ASD).

To accomplish this, we must have a federal mandate requiring insurance to fund these services.  Ladies and gentleman, the debate is over, we know that Quality ABA services, delivered consistently over a specific time frame, are effective in creating progress on substantive goals for individuals with ASD.  The science is clear.  We can no longer allow children, teens, and adults to go without these services; to do so is unconscionable, inhuman, fiscally irresponsible, and — in many cases — life threatening.

As we move forward, Quality ABA must be our goal.  We must be clear.  Quality ABA therapy does NOT employ aversives, is NOT punitive, and does not harm children.  Organizations and individuals who claim to provide ABA to individuals with ASD must be trained and rigorously held to the highest standards, so we can be assured that services delivered are safe and effective.

  1. We must give our adults with ASD a voice in the Autism community and the global community.  For decades, the largest unified voice for the Autism community has been parents of children with Autism.  Parents are an essential voice, necessary to the discussion, but we must make room for adults on the spectrum to be heard.  This will require a great deal of perspective taking and patience on all sides.  The horrible irony here is that this is frequently a short suit for the members of the autism community.  Let’s be honest, perspective taking is something in short supply in the global community!  No matter the obstacles, we must do this hard work.  If we as a community fail to do this, we will never accomplish our goals; we will mire ourselves in back biting, finger pointing, and ineffective action.  We will not always agree, but we must always be willing to listen.
  1. We MUST create and fund programs for teens and young adults that lead to job readiness.  The sheer magnitude of the numbers of individuals with ASD alone should propel us to take this action now.  Clearly, this action is essential for the good of our entire society.  Additionally, successful programs that do create job readiness have demonstrated that there is a virtual gold mine of talent when we do this correctly.  We cannot only build self-esteem and skills in individuals; we can help facilitate their contributions as productive  members of society.

These are three simple goals that have already been demonstrated to be effective.

Imagine if we could wake up in 2015 and know that every child had access to early diagnosis and intervention, that every individual on the spectrum had access to quality ABA to help them achieve their individual goals, that every teen with ASD was being prepared to be substantively employed, and every adult in the Autism community knew that they would be heard!  It is possible.  It is happening in small corners all over the world; we just need to focus and spread it to the far corners of the earth! Together, we can achieve these goals and make this world a place where the strengths of the Autism community can shine.

Shannon Penrod is an outspoken Autism advocate and the host of Autism Live, an interactive webshow featuring news, resources, and information for the Autism community.  Shannon’s son was diagnosed with Autism at the age of 2 1/2.