When you think of the word autism, what picture comes to your mind? Chances are, unless you belong to the autism community, you probably visualize someone who is like “the rain man” who starred in the famous Dustin Hoffman movie. Many of you who are aware of autism think of autism and picture a children. Nonverbal or verbal, but still a child. Understandable. What frame of reference do you have to understand autism when the picture you are given in the media, when given, is that if autistic children who appeared only in the past two decades?
Let me give you some idea of my own experience with this. My knowledge that autism is a spectrum condition happened only when our own beautiful, precious daughter, was diagnosed with Pervasive Development Disorder-Not Otherwise Specified (PDD-NOS), before age three. That was over eleven years ago, and Hannah is fourteen years old. Her diagnosis soon caused me to “self-diagnose” with an autism spectrum disorder (ASD), based on my lifetime of developmental issues that were clearly outside the norms. Growing up, I endured being misdiagnosed with labels such as “obsessive-compulsive neurosis,” and in school, educators slapped me with labels such as “emotionally disturbed” and behaviorally disordered.” I detested these labels! They made it look like I was the problem, that I was crazy, and that all my problems were my fault and in my head!
I spent years having to settle for an ASD self-diagnosis. I did not have the finances to use the services of the few professionals in my area who are said to be qualified to screen and diagnose adults with any ASD. Also, my family was not enthusiastic with me wanting to get checked out for this. They argued, “You’re too old to get services anyway. What good would it do you to know if you’re autistic or not? I could tell you that! If you get that label, people will not respect you. People fear those with labels. That is the way this world is.” As if I needed to know how the world treats those with differences or labels! It was disheartening to me to watch my family instill in my daughter the idea that her ASD was something shameful, to be kept secret, and to talk about only in hushed tones. Oh, I know that they have meant very well and only long to protect Hannah from being discriminated against, bullied and rejected! Their fears have continued though Hannah has always been mainstreamed, well-behaved, and made good grades in school. They fear that openness about her ASD would “ruin it all.” Worst of all, they have told me, “If you yourself ever get an ASD diagnosis, you need to keep it secret from her or she’ll lose respect for you.” Sigh.
Without much family support, I continued to contact professionals in the hope that I would locate a qualified professional who accepted my insurance. In time, my family reluctantly came around to accepting that I was not going to let this matter go; they saw that I was powerfully motivated to get answers as to what could explain many of my problems. Though I was aware of this autism center, at a teaching hospital two hours each way from my area, I did not consider it, as it meant much driving each way, to get there. But in time, when I saw that they were the only ones who accepted my insurance and had a doctor who screened adults for ASD’s, I was able to persuade my family to reluctantly support me in accessing an official autism diagnosis by these means. in 2012, an appointment was scheduled almost for nine months in advance, on October 29, 2013. Relying on results of an eight-hour cognitive test taken on January 3, 2013, the autism specialist used that, the interview on that date of the appointment, comprehensive blood-work, and a later February 4, 2014, interview with my mom about me, to finally give me the diagnosis of a Pervasive Development Disorder. Relief.
But this is by no means the end of anything. It is just the beginning. My family, unfortunately, have let society’s ignorance and stigmas about labels and differences influence their attitude toward not only Hannah but toward me. Stay in the closet, we are both told. But doing so will not only keep the stigma going but will perpetrate that idea that autism is just a children’s issue. If it is a “disease” that has sprung up only in the past couple of decades, what explains adults like myself who are able to confirm that this very same condition has explained our own lives and long before autism was recognized as a spectrum?