Give Me 10 Minutes, And I’ll Give You Some Controversy

It all started a couple months ago after I’d submitted another article on the subject of aspergers and autism.  I cannot even recall which post it was, but the question has stayed with me for a couple of months.  I’ll paraphrase the question as follows:

“I have a relative whose son is diagnosed with Autism.  I referred to him as having Autism Disease, and I got a very negative response from his mother.  What is the correct way to refer to someone with Aspergers or Autism?”

As a favor to this reader, I’ve posted this question on a couple of groups I’m part of, both on Facebook and on LinkedIn. I also read a stellar Psychology Today article written by John Elder Robison, author of Look Me In The Eye, entitled I Am Autism, Too.

aspergers autism

photo credit: SecretsandLiesinPerfectHarmony on Flickr

The Autism Aspergers Controversy

Opposing “Disease, Disorder, and Cure.”

One of the persons commenting on this discussion summed of the nature of the controversy very well:

“How would you like it if you were ‘diseased’ or referred to as ‘disordered’  it suggests that any NT (neurotypical)  is free from such defects?”

This is where the greatest controversy lies.  As some have astutely pointed out, the terms “disorder”, or “disease” were originally meant to serve the medical community.  They were meant to accurately capture some of the aspects of autism and aspergers.  But think about this:  As Lynn Soraya, another gifted writer, has pointed out, it’s like parents having a boy, and wishing and communicating to the boy his whole life that they wish he had been a girl.

In the words of John Elder Robison,

“For many of us on the spectrum, a parent’s stated quest to “cure” our autism feels sort of like a divorced parent constantly criticizing her ex in front of us kids. As that kid, I know I am half Dad, and half Mom. So when Mom tells me Dad is no good, what is she saying about me? For those of you who think this is metaphor, let me assure you it’s not.

If much of my life is defined by autism, and autism is a terrible thing, how do you think I will feel about myself? I ended up in special classes because I am autistic. I flunked out because I am autistic. I already know I am disadvantaged with respect to others who are not autistic. I don’t need more stuff to feel bad about.”

The issue, then, lies in the power of words to color a person’s whole experience of themselves.  It’s very hard to think well of oneself when the word “disease” and “disorder” is attached to one’s fundamental nature.  And the thought that one needs to be “cured” of a disease or disorder implies that one is fundamentally flawed.

So, then, where is the controversy?

I believe the controversy comes into play from parents and relatives who see the very deep and real difficulties that their children/loved ones face as a result of varying degrees of autism and Aspergers.

Here is a quote from the comment section of Mr. Robison’s article:

The title of this comment was, “Please Stop Dictating to Parents”

I have a 14 year old son with Autistic Disorder. He is not “on the spectrum” as you are. He is severely and profoundly affected by his Autistic Disorder deficits.

At present no cure exists but I have over the past decade sought ABA intervention for him and for other autistic children who want to help them with ABA.

I also want research to continue towards finding more treatments and hopefully a cure for what is for my son a seriously debilitating disorder. I am happy for you as a high functioning person with Aspergers Disorder that your do not need or want a cure.

But please stop trying to dictate to parents that we can not describe our children’s conditions honestly and openly. And stop telling parents that they have no right to fight for a cure for their children.

You want respect for your decision to oppose a cure for yourself. Here it is. I respect that decision.

Now, will you reciprocate and tell me that as the parent of a severely autistic boy who can not decide for himself that I have the right to seek a cure on his behalf and that you will exercise that choice.

Can you show mutual respect Mr. Robison?

This parent was offended at Mr. Robison’s assumption that s/he was judging their child’s condition.  And often, the organizations and persons seeking a ‘cure’ for autism see aspects that are debilitating and want to take those difficulties away.

My Thoughts Regarding Autism and Aspergers

Words Matter

It’s very important to have some type of label to describe a syndrome, or number of characteristics, that define a subset of people. As I have written previously, receiving a diagnosis may be the best thing that can happen for a person on the autism spectrum. Without knowing something about the condition, a person may wander around for years knowing something does not make sense to them, but not quite know what it is.

On the other hand, the words attached to the diagnosis matter supremely. There has been an increasing move to recognize neurodiversity. Temple Grandin has done a terrific job of highlighting the many learning styles and gifts on the autism spectrum. More and more research is pointing to the strengths and positive aspects of the autism spectrum.

And, as has been summarized in a flurry of comments across the web, especially those individuals wiht Aspergers and Autism, it truly matters whether you terms this a disease/disorder, or a condition or syndrome.

Advocacy Matters

This is a very strong counterbalance to this whole debate. Without agreeing with the terms “disease, disorder, or cure”, I do believe that assisting individuals on the autism spectrum is crucial. Just as it is important to offer any human being assistance in areas where she or he needs to grow! As a counselor, I work with individuals who have depression, bipolar disorder, schizophrenia, anxiety disorders. Each person also has a host of strengths that I seek to highlight for him or her. And each person is worthy of receiving as many strategies, solutions, and skills to help them live happy, fulfilled lives.

And that’s where I agree with those who provide some of the strongest advocacy for individuals on the autism spectrum. They are wonderful, caring people who have a drive and dedication to serve and help their children and loved ones.

But, Words Do Matter.

In Conclusion

So, in conclusion, lets embrace neurodiversity and provide empowering words to describe individuals on the autism spectrum. Let’s let them help us NT’s with the wealth of giftedness they bring to our world. And, in turn, lets’ seek to help them, wherever possible, live fulfilled and happy lives.

In the words of John Robison:

I want useful help. I want to learn how to hold a conversation, how to make a friend, how to get a job. Practical skills are what I need, not moral judgments.

That’s why it is vital to embrace neurological difference. It is not going to go away, whatever a parent may wish. Demonizing the way we are only makes us feel bad.

And that’s not all. I am a logical fellow. When I consider the situation, it’s obvious that autism is not evil. It’s not good or bad. It just is. There is no morality hidden inside neurological difference. It’s not logical.

What do you think?  Have I missed some aspects of this controversy?  Are there some thoughts or comments you would like to add to this discussion?

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Comments

  1. Lee says

    I’ve got Asperger’s syndrome and I don’t consider it to be a disability, more of a difference. It is however debilitating, and for that reason I’m classed as disabled by the state.

  2. steveborgman says

    Lee, thank you for sharing your experience. You highlighted some important aspects of this discussion: A) Considering Aspergers as a difference versus a disability. B) Also recognizing that sometimes it can be debilitating in terms of social communication C) Unfortunately, these labels are sometimes the only way to get services, which highlights the need to advocate for individuals on the autism spectrum.

  3. SueByrne says

    I was one who wandered around, for 46 years, feeling that the rest of the world was “out there” somehow inaccessible to me, viewed through a wall of glass 20 feet deep but crystalline in transparency. Only with the diagnosis of my daughter did I realize her diagnosis fit me, and then my life made sense. I cannot teach her everything she needs to learn, as I have many of the same deficits. But I CAN advocate for her to learn these things and help her find mentors. So, I am grateful for the label that liberated me from my isolation in the most important way, giving me the words to paint the boundaries of the issues, pulling the shroud off the mystery and revealing the practical tools I can use at my option to more fully realize my abilities, given the right support. It still feels overwhelming, and I also love the term “spectrum” that gives me empathy for the unknowable worlds of so many others now. But “disease” raises the hackles; it is to me a word that applies to physical deterioration. When applied to human capacities as innate as sociability and relationship and communication, the danger lurks that this “disease” renders some of us less human. It is therefore dehumanizing. It is therefore terrifying with potential for evil we have seen unleashed in Rwanda, Nazi Germany, and countless other dark episodes.

  4. steveborgman says

    Sue, thank you for sharing your intensely personal experience with Aspergers, labels, and advocacy. I agree with you that the word “disease” can be easily misunderstood and used in harmful ways. I appreciate the words ‘condition’ or “neurodiversity” or “differently abled”. Thank you for sharing.

Trackbacks

  1. Applied Behavior Analysis Offers More Than Memorization | Autism symptoms Blog says:

    [...] Give Me 10 Minutes, And I'll Give You Some Controversy … [...]

  2. [...] Again, don’t misunderstand me!  There is no ‘cure’ for Aspergers.  Nor am I sure I would want there to be a cure. [...]

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