LIFE ON THE AUTISM SPECTRUM: DIAGNOSIS MURDER
By Brian Lafferty
February 2, 2012 (San Diego) – I recently read a New York Times article that every Autistic and Asperger’s person, and their families and friends, should read. It’s troubling to say the least. A panel appointed by the American Psychiatric Association is looking to redefine Autism for its newest edition of the Diagnostic and Statistical Manual of Mental Disorders. They propose lumping most Autistic people into one category, among other things.
Notice I said “most.” By their logic, high-functioning Autistic people would no longer be Autistic.
The proposal involves narrowing the number of social deficits and repetitive behaviors. Asperger syndrome and other related Autism disorders such as “pervasive developmental disorder, not otherwise specified” would be eliminated. My sister, father, and I agreed that I’d likely be affected by this new definition.
So why are they rewriting the criteria for diagnosing Autism? Some studies say 1 in 110 children are diagnosed with the disorder. So by narrowing the criteria and weeding out those who are high-functioning, or have Asperger's, it would cut down on the number of diagnoses.
This is not only wrong it’s dangerous. While I don’t dispute that Autism diagnoses are high, it is not a compelling reason to redefine Autism.
Reading this article brought back a memory from college. A few of my classmates were discussing mental disabilities and how they thought too many people take antidepressants when they didn’t need to. I disagreed and added that I’m Autistic.
One of the classmates responded with something I took personally. He meant well, and there was no malicious intent on his part, but he shouldn’t have said what he said. He told me too many people were being diagnosed with Autism and that whoever diagnosed me could have been wrong.
It was the first time somebody questioned my disability. I immediately defended my Autism and after a minute of polite debate, the matter was dropped and never brought up again.
Reading the New York Times article made me feel as much threatened as I was during that incident. I wonder how much personal experience this panel has had with high-functioning Autistic people. I want to know if they’re familiar with the struggles Autistic people and their families have gone through and will go through. Have they thoroughly considered the possible financial and social ramifications of such a huge decision?
Have they even considered that people can start out as low functioning, but through therapy can be high functioning? When I was little I would have easily been diagnosed under the currently proposed definition of Autism. Throughout elementary school I had difficulty with verbal expression. Verbal communication with my teachers was hard because I knew what I wanted to say but I couldn’t get it out.
I had difficulty making friends because I simply didn’t know how or understand what friendship was. The only way I had a friend was if somebody wanted to be my friend, and very few kids wanted to.
Another criteria I would satisfy under the new definition is hyper-reactivity to sensory input in environment. Examples include adverse responses to specific sounds or smells. In the summer of 1993, when I was seven years old, my family and I went to Yellowstone Park. I didn’t know which was worse at the time: the foul odor of sulfur or the loud booms of the geysers. I couldn’t cover both my ears and my nose. I was so scared and miserable I stayed in the van playing my Game Boy while the rest of my family stayed out to watch Old Faithful.
In middle and high school, bullies mocked my “strange” voice. It was infuriating. I couldn’t help the way I spoke, and I was going through puberty at the time. Today I do talk a little “funny” to some extent. When it counts, I’m forced to make myself sound as “normal” as I can.
I’ve come a long, long way since then, thanks to years and years of therapy. I have little trouble starting conversations, my eye contact is vastly improved, I don’t have extreme reactions to sounds or smells (except with balloons), and I’ve made a lot of friends in college and in my job as a film critic.
I’m not saying I’m cured. Remnants of my childhood symptoms remain and always will. Just because somebody is high functioning doesn’t mean that person doesn’t have issues that hold him back. I still play with my pens and pencils, and sometimes I can’t make eye contact. I struggle with navigating conversations. Sometimes I blurt out random things without knowing it. I never know when a conversation topic ends, although virtually everyone else has the ability to determine it.
As an adult, I’ve struggled to get a job. I look “different.” I can only hide it so much. Federal law prohibits interviewers from asking about disabilities. They can, however, make unfair assumptions. This is one reason why a job interview isn’t the best way to determine whether an individual should be hired. An Autistic person can be fully capable of fulfilling his job duties, but if he doesn’t look “normal” at an interview, he won’t get the job.
When someone tells me that I’m not Autistic, it makes me mad. I’ve dealt with so much crap in my life, it’s not even funny. Some people get put off or turned off by my quirks and behaviors that I’ve long ago accepted I can’t help.
At the same time, I’ve accomplished so much. Student body president in high school, graduating cum laude in college, etc. Now a panel of experts wants to tell me – after everything I’ve been through and the struggles I’ve faced to succeed in these endeavors – that I’m not Autistic? That my achievements are great, but since I’m not Autistic, they’re not as remarkable or inspirational to others since I’m more “normal” in their eyes?
School districts, a lot of which are strapped for cash, can deny services to kids who need them. If the new proposed diagnosis criteria were to be put in place when I was in middle school, when I was higher-functioning, the school district could have refused to provide funding for me to attend The Winston School. Were it not for The Winston School, I would have probably been a huge failure at school and in life.
For as long as Autism has been known, it’s gotten a really bad reputation. I believe the average person tends to lump high-functioning Autistics like myself with the very low-functioning. By consolidating most Autistic people into one category, and excluding those who are high-functioning or have Asperger’s, it would worsen this perception and give Autistic people an even more negative image, with no chance of recovery.
But the worst aspect is the potential identity crisis. If I’m not Autistic, what am I? Eccentric? It’s taken me years to embrace my Autism. It’s a way of life. It’s who I am. I love being Autistic and that is the truth. I’d rather be referred to by name rather than a label. But if people must label me, I’d rather be labeled as Autistic than eccentric.
Brian Lafferty is a young adult living with Autism. He graduated from California State University, Fullerton with a degree in Radio/TV/Film and is also the film critic for East County Magazine. He can be reached at firstname.lastname@example.org. You can also follow him on Twitter: @BrianLaff.