21 Years of Autism

Following an incredible evening which entailed the honor of moderating a panel of young adults diagnosed with autism (with NAA-NY Metro), it occurred to me that it has been more than two decades years since I began working in the field of autism.  21 years is a long time, especially in the world of autism which has changed so monumentally during this time.  One aspect of last evening really stood out in terms of how the the world has changed with respect to autism.  A parent in the audience asked the panel whether and how often they tell people they have autism/Asperger’s syndrome and whether they had experienced any stigma.  By and large, the members said that they tell others frequently, often at the first appropriate moment, so that there is understanding about any of the quirks with which they might present.  None of the panelists reported any stigma.  This is truly remarkable.  The degree of awareness has grown so much so that these particular individuals, in NYC, find that others know what autism is, as well as feel comfortable (and not ashamed) of the “label” that explains who they are.

Twenty-one years ago, when I was an undergraduate sophomore looking for direct experiences with children to boost my eventual application to clinical psychology graduate school programs, I first met children with autism working in a school and research setting using the Applied Behavior Analysis (ABA) approach.  Back then, even knowing of one child with autism was highly rare.  The Diagnostic and Statistical Manual of Mental Disorders-Fourth Edition (1994) indicated a rate of autism of 2-5/10,000 individuals; now rates of autism spectrum disorder [note the change in terminology] have been found as high as 1 in 68 children via the CDC .  Back then, ABA was the primary (and often the only known ) treatment approach in most circles (with the notable exception of a few, including Dr. Stanley Greenspan).  When I spoke of my work with these children, people both in and outside of psychology had no experiences with which to compare. Frequently, the only reference to autism was often from the movie, Rainman.  Services for families of children with autism were few and far between.

Since 1995, I have worked as a teaching assistant training other undergrads in ABA, worked in a private home-based ABA program for children with autism, an early intervention (EI) center- and home-based program using ABA and DIR/Floortime, at the Rebecca School , and in my own private practice using DIR/Floortime.  In 2001 , I began a parent support group for parents of children with ASD in the EI program.  Sessions centered around explaining what autism was, ideas about causes, and ensuring that parents were not feeling the blame attributed to them by outdated unproven theories.  During parent groups now, the discussion and concerns brought from parents of recently diagnosed children are much different.  They are more about learning about treatment approaches and advocating for the proper services rather than “what is autism?”

Another amazing aspect in the field has been the self-advocacy efforts of many individuals with ASD.  By sharing their stories (in published books, blogs, by speaking at conferences), a wealth of knowledge has been conveyed directly to the public from those with ASD themselves. I continuously learn from these individuals, adding a crucial layer to the work that I do.  Last night’s NAA-NY Metro panel was a testament to the incredible impact on the field of autism these individuals have.  These brave individuals (for whom, by nature of their disability, expressing themselves in a social context is quite difficult) shared their life histories and amazing successes in an articulate and inspiring way.  I do not think that this type of forum happened two decades ago.

A resounding theme from last night’s panel was self-awareness and self-advocacy and how necessary these are for success.  Many asked, “How do you develop self-awareness?” Panelists’ replied about their exposure to neurotypical peers and having at least one friend who pointed out their differences.  I was glad to have my DIR/Floortime background to provide an additional response (especially for those who have less access to neurotypical peers). My DIR/Floortime training has taught me that self-awareness and self-advocacy are rooted in respect.  By attuning to one’s child, meeting them “where they are at,” and exploring with them the “why’s” of his/her behaviors, a parent (and hopefully those involved in his/her support and care) unconditionally accepts and loves them.  Experiencing that unconditional positive regard enables individuals to accept themselves for who they are, and, in turn, be comfortable (and proud!) to inform others of their needs.  When parents, educators and therapists support individuals to understand their own needs in a respectful way, they are laying the foundation for those individuals to advocate for themselves.

How blessed I have been to work within the field of ASD for this long.  I believe that it is with the theoretical and treatment models based on development, individual differences (including sensory processing) and relationships, and the self-advocacy of so many individuals with ASD, that awareness has been promoted in a positive way.