Don’t Define Me by my Deficits by Judy Endow
One thing that happens when a person is diagnosed with autism is that people start evaluating how that person doesn’t measure up. In fact, this needs to happen in order to receive an autism diagnosis. A diagnosis is important in terms of securing needed supports and services.
The measuring doesn’t stop after the diagnosis is received. As autistic children grow up they are assessed and measured many times over and for good reasons. Every needed support and service means the autistic must “qualify” to receive it. If an autistic child needs help in school they must meet the criteria to receive an Individualized Educational Plan – basically a plan with goals and outcome measures to put the student on the path towards the free and appropriate education that he cannot be denied according to law in the United States.
All of this is good and makes sense.
What doesn’t make sense is when we take these measures of shortcomings and use only these shortcomings to think about autistics. When this happens autistics are thought of only in terms of their deficits and difficulties. While being found lacking and having deficits and difficulties as measured against typically developing peers is of utmost importance in the diagnostic realm and in terms of getting educational, medical and support services, this is not the sum total of an autistic person.
This is very important because what we need to have a diagnosis along with the medical, educational and support services that follow are very different from what we need to have a meaningful and productive life. I will make this personal now, using my own life for you to see an example.
You see, I get my diagnosis and supports based on what’s wrong with me, what I can’t do, and what my difficulties are in daily life. These things are easily measured against the neurotypical norm. So, that is how most of my life I have only known who I wasn’t and what I couldn’t do.
“Because there is not a good way to measure the things that make me be me those things go unmeasured. Instead I am measured by the yardstick of what makes you be you and am found to be lacking.” (Endow, 2013. pg. 44)
Life According to What You Can Do
But then, just like you, I live out my daily life according to what I CAN do, what I am good at and what I enjoy in my day.
In my everyday life as an adult it matters a whole lot what I CAN do because my capabilities have allowed me to earn a living. It matters more in my life today that I can write books, do public speaking and run my own consulting business than it does that my speech was delayed, I was institutionalized as a child or have a classic autism diagnosis.
It matters today what I am good at and what I enjoy because this has led not only to me running my own business, but in addition is the basis of my friendships with others and the hobbies and interests I pursue. Together, my work and my friends intersect with my hobbies and interests, bringing me a full life with a depth of meaning.
Autism is my diagnosis and indeed is so pervasive that it cannot be separated out and thus, I not only have autism as a diagnosis, but I am autistic in my identity. My diagnosis is about who I am NOT and what I cannot do – a measure of my limitations, deficits and difficulties. Being an autistic woman is about who I am – a human being who IS, who CAN and who DOES – measured by living a full life in her own way in this world.
I had to learn how to outsmart the hard of my autism to live a full life as an autistic. It took several decades. Today my life is about who I am and what I CAN do. It is about the real relationships with colleagues, friends and family. Today I still have limitations, difficulties and deficits, but they do not define me. Instead they inform me. I can plan my life accordingly, ensuring supports, down time and accommodations so I can be the human being I want to be in this world. Today I have a full and meaningful life. I am content and happy and I am still just as autistic as I have always been.
My advice for younger autistics and for those who love and support them would be to look at who you ARE as a human being. Ultimately, this will become more important than your autism. Most of the time people around autistic children focus in on what they cannot do so as to make those areas of life better. In doing so autistic children grow up knowing who they are not. This is not a good basis for living a meaningful adult life because as adults, our work, our friends and our pastimes are based on who we are, what we can do and what makes us happy.
Therefore, I think it is of utmost importance our children learn this along the way. It took me most of my life to learn this. I hope by writing about it people supporting today’s autistic children will be sure to teach them who they ARE in this big wide world because one day that will become more important than their diagnosis of autism.
Endow, J. (2013). Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.
Endow, J. (2009). Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.