More Than An Autism Diagnosis

"This measure is one of “less than” as a diagnostic necessity, but please remember we are not “less than” human beings. We have a diagnosis – not a flawed humanity." Judy Endow on Ollibean
I am an adult with autism. My thinking is visual rather than word-based. Autism gifts me with a literal and concrete way of thinking. My thoughts are all in full moving color. You can read about this and about my life in my book called Paper Words, Discovering and Living With My Autism. (Endow, 2009a)

“Always, I have a front row seat to watch the show! Each color, with its infinite variety of hues and brightness, has its own movement patterns and sound combinations. Even though spoken words are the medium most often used by people to communicate with me, I am wired to connect to these words through the sound and movement of colors. This is the way I think. It moves quite fast, but even so, tends to be slower than the speed of conversation. This can cause me to look less intelligent. People say I have processing delays. Painting allows me to show my thoughts without the burden of constant translation.” (Endow, 2013)

So, why am I telling you this?

I recently sent an email to friends telling them of my art expression through acrylic painting and inviting them to take a look at the art page on my website with the paintings that show my autistic style of thinking. (www.judyendow.com/Art.html)

After viewing the paintings along with the above quoted words that go with the paintings, a friend responded saying that I seemed to have connected with a part of myself that has very few adjectives in common with the stereotypical view of autism.

This got me thinking. Stereotypical views of autism are based on the neuro majority assignment of “truth” as they look at us.

All human beings, regardless of neurology, look out at the world through eye glasses imposed upon them by their own neurology. Then, they assign meaning to the behavior of others according to the meaning that behavior would have were they engaged in it.

Most times this automatic guess is correct, but sometimes – like when neuro majorities are looking at autistics – the guess can be wrong. Over time, this repeated wrong guessing takes on a life of pseudo truth and becomes a stereotypical view. Thus, today we have a stereotypical view of autism that is quite narrow and limited and very much lacking in empathy, generated by those who live in their own world (that is not our world)…

Oh my goodness! Isn’t that exactly how neuro majorities describe us! Might it mean that we both – neuro majority and autistic – are making assumptions about the other according to our own yardstick measure that we unwittingly assume, without giving thought, is baseline “normal?”

The autism diagnostic criteria are a report on deviation from typical neurology. As such it shows a picture of what autistics ARE NOT and highlights what we CANNOT DO as compared to the majority “normal.” It says nothing at all about who we ARE or what we CAN DO. Indeed, our abilities and skills most often remain untapped because the neuro majority do not possess them so have no way to understand or support that development in us. For example, if my way of thinking in the movement and sound of color had been supported as a youngster I likely would have been able to produce paintings long before my late 50’s.

Even so, the negative, deficit-based language of diagnostic criteria is not good or bad, right or wrong. In fact, it is necessary if we want to utilize health insurance to pay for treatment and support of autistic individuals. They must “have” something and that something must be something “wrong” in order for the health care reimbursement system to work.

The problem comes when we take the deficit-based language out of the diagnostic realm and start using it to define the humanity of individuals with autism. It imposes limits on the way people think about us and in turn on the opportunities they extend to us.

So my friend was almost exactly right when saying that, through my painting, I seemed to have connected to a part of myself that has very few adjectives in common with the stereotypical view of autism. I say, “almost exactly right” because I have not connected with this part of myself. This IS “myself” – always has been. The real of me – the essence of who I am as a human being – has very few adjectives in common with the stereotypical view of autism!

When talking about autistics – individuals who have been diagnosed with autism – it is important to realize your words have power, often opening or closing doors. What you say and how you say it really does matter. (Endow, 2009b) Please do not use the deficit-based diagnostic criteria of autism to describe my humanity – or the humanity of any autistic.

In this age of the stereotypical view of autistic people, largely due to the autism awareness campaigns, here are some ideas to help any neuro majority person who may be interested to see beyond an autism diagnosis in an autistic person:

grey circle When interacting with an autistic think of that person rather than what you happen to know about autism. What you know about autism may or may not apply to a person with whom you are interacting. And even if it does apply, it will not do much for you in terms of getting to know that person.

grey circle Think of the person you are interacting with rather than the language pigeonholes you have heard applied to autism such as low functioning and high functioning. Nobody actually has a clear definition of those words. After all, how would you respond if someone asked you, “Are you  high functioning or low functioning ?”

grey circle  Realize that autistics are measured against the majority “normal” in order to get a diagnosis and, if young enough, early intervention. This measure is one of “less than” as a diagnostic necessity, but please remember we are not “less than” human beings. We have a diagnosis – not a flawed humanity. We have different operating systems. This means we may struggle with many of your ways and have to overcome many obstacles to fit into your world, but we are not less than – just different.

grey circle Get to know us for what we can do rather than for the diagnostic criteria attached to our label. This may be hard because the majority of social conversation and news media reporting is laden with definitions of autism, which of necessity are deficit-based. This is what people have come to know about autism. It has become our “public image” so to speak. But at the end of the day don’t we all like to be known for our strengths – for what we can do rather than for our struggles? Don’t we all want to be seen in our best light as good human beings in this world?

 

References
Endow, J. (2009a). Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.
Endow, J. (2009b). The Power of Words: How we talk about people with autism spectrum disorder matters! Shawnee Mission, KS: AAPC Publishing.
Endow, J. (2013). Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.
The Art of Judy Endow. 2012. www.judyendow.com/Art.html.

Image description black and white photograph of woman with long brown hair and glasses smiling.JUDY ENDOW, MSW

Judy is an autistic author and international speaker on a variety of autism related topics. Read more from Judy on Ollibean here and on her website www.judyendow.com.

About the Author:

Judy Endow, MSW is an author, artist, and international speaker on a variety of autism-related topics. The award winning Paper Words, Discovering and Living with My Autism ,  Learning the Hidden Curriculum: The Odyssey of One Autistic AdultPaper Words, and many other wonderful books can be found on her website JudyEndow.com.

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