Controversy #5: "autistic" vs. "has autism"

One of the first things I read after Elias was diagnosed was a quote by Ellen Notbohm that read something like "your child is more than his/her autism, do not define them by this one characteristic. You wouldn't call a child with cancer "cancerous," why call your child autistic?" This made sense to me, particularly since I was in the very nascent stages of trying to understand the diagnosis and thinking about calling Elias "autistic" was enough to have me swimming in a pool of tears. "Autistic" seemed like I was shackling him with this diagnosis; "has autism" seemed more like something that could eventually be discarded or cured. Of course, there is no proven cure for autism, though a small minority of children eventually shed their diagnosis.

It seems that my struggle with calling Elias autistic is typical of the dichotomy between parents of autistic children and autistic adults. Autistic adults routinely prefer to be referred to as autistic, whereas parents of autistic children want their children to be referred to as "my son Johnny who has autism." The Autistic Self-Advocacy Network (ASAN) has an informative post about what they call "Identity-First Language" as opposed to "Person-First Language." From the post:

 In the autism community, many self-advocates and their allies prefer terminology such as “Autistic,” “Autistic person,” or “Autistic individual” because we understand autism as an inherent part of an individual’s identity (emphasis mine) — the same way one refers to “Muslims,” “African-Americans,” “Lesbian/Gay/Bisexual/Transgender/Queer,” “Chinese,” “gifted,” “athletic,” or “Jewish.” On the other hand, many parents of Autistic people and professionals who work with Autistic people prefer terminology such as “person with autism,” “people with autism,” or “individual with ASD” because they do not consider autism to be part of an individual’s identity and do not want their children to be identified or referred to as “Autistic.” They want “person-first language,” that puts “person” before any identifier such as “autism,” in order to emphasize the humanity of their children.

Because when people say “person with autism,” it does have an attitudinal nuance. It suggests that the person can be separated from autism, which simply isn’t true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the color of his or her skin.

One argument I encountered in one of the more cogently-written papers in favor of person-first language expostulates that because cancer patients are referred to as “people with cancer” or “people who have cancer,” as opposed to “cancerous people,” the same principle should be used with autism. There are some fundamental flaws with this analogy, however.

Cancer is a disease that ultimately kills if not treated or put into long-term remission. There is absolutely nothing positive, edifying, or meaningful about cancer. Cancer is not a part of a person’s identity or the way in which an individual experiences and understands the world around him or her. It is not all-pervasive.

Autism, however, is not a disease. It is a neurological, developmental condition; it is considered a disorder, and it is disabling in many and varied ways. It is lifelong. It does not harm or kill of its own accord. It is an edifying and meaningful component of a person’s identity, and it defines the ways in which an individual experiences and understands the world around him or her. It is all-pervasive.

While it was difficult when he was first diagnosed to refer to him as "autistic," as time passes and I reflect on it further, it is getting easier to say that "my son is autistic." However, I don't like labeling him or anyone else, though I understand that there is sometimes a need to do so. I will be happy when he is able to tell me how he would like to refer to himself and I will be happy to use that term. But until that blessed day, I'm going to refer to him as "autistic" as little as possible -- not because of the word but because I don't want his neurology to be the first and maybe only way that people see him.

Family Pictures

Family pictures + me = frenemies. I love seeing other people's pictures and I love the idea of us getting them done. But in practice, they stress me out more than graduate school. For me, 90% of the tension is picking out everyone's outfits. I am terrible at picking a palate, coordinating colors, and then shopping for appropriate clothes that are within our budget. I am fully aware of my ineptitude and then to think about having it immortalized in photographs for which I'm paying a decent amount of money is paralyzing to me.

Thank goodness for Pinterest that has pins like this to help the color-challenged such as myself. And I can sit in the comfort of my own home and order pieces online and not be overwhelmed with multitude of choices in a store. The downside of course is not being able to see everything together before you buy, which in our case necessitated a trip to the mall to return some things and find a shirt for Ben and then a trip to Target to find white shoes for Caroline the day of the shoot (yay for $8 clearance shoes!). 

The other 10% of the stress comes the day of the shoot. Roxanne at Hawa Images is a friend from our old church and it was great to reconnect with her. She immediately made the kids feel at ease and was a pleasure to work with. However, I knew that it was not going to be easy for Elias to "cooperate" and it was going to be quite a bit of work to get a good picture of him individually and maybe impossible to get a shot of us all looking at the camera at the same time and smiling. I tried to let go of my agenda and be realistic about it, but I'd be lying if I said I wasn't hoping to get at least one good shot of us as a family all looking at the camera. But honestly, this is our family. We are not ever color-coordinated, my two oldest fight like North and South Korea on the DMZ (which is to say, constantly prodding and provoking each other), and Elias is who he is in all of his wonderfulness, which doesn't include sitting nicely and looking at a camera with a picture-perfect smile (though he will say "Cheese" when a camera is pointed at him, just not necessarily looking at the camera). We are messy and imperfect, but we love each other and we are a family. And that's what I want the images to reflect, which I think Roxanne did beautifully.

Here are some of my favorites:

I wanted pictures of the three kids individually. 

And I wanted pictures of the three of them together:

Ben asks upon seeing this picture, "Why did she take a picture of our butts?"

And I wanted pictures of all of us together, even if we weren't all looking at the camera.

This is way more what we're really like:

I love this one:

And I wanted a decent one of me and Chris, since we haven't had a good picture together since our wedding day:

And I wanted a few candids of the kids:

I love this one of Caroline. Pure joy.

My boys.

Controversy #4: Theory of the Mind

As I've been researching and ingesting information about autism, there is only one listed autism "characteristic" that really frustrates me. I am okay with stimming, with speech delay, with echolalia, with sensory processing issues, with developmental delays. I know that's part of the deal and it is what it is. However, when I read about the Theory of the Mind, I get upset mostly because I think that the premise on which it is based is faulty and misleading.

What is Theory of the Mind (ToM)?

Theory of Mind can be summed up as a person’s inability to understand and identify the thoughts, feelings and intentions of others. Individuals with Asperger Syndrome/HFA can encounter have difficulty recognizing and processing the feelings of others, which is sometimes referred to as “mind-blindness”. As a result of this mind-blindness, people with AS may not realize if another person’s behaviors are intentional or unintentional.

From  Executive Functioning and Theory of Mind, Autism Speaks

ToM in autistic children was based on the Sally-Anne test, which was a 1985 test which was set up as follows: Sally has a marble. She puts it in her basket. Sally leaves. The child then witnesses Anne come and take Sally's marble out of her basket and put it in her own box. Children are then asked the Belief Question "Where will Sally look for her marble?" Per the Wikipedia link above, "23 of the 27 clinically unimpaired children (85%) and 12 of the 14 Down's syndrome children (86%) answered the Belief Question correctly. However, only four of the 20 autistic children (20%) answered correctly. (emphasis mine) Overall, children under the age of four, along with most autistic children (of older ages), answered the Belief Question with "Anne's box", seemingly unaware that Sally does not know her marble has been moved."

A few things about this study: (1) it was done in 1985. There have been like 18 DSM's in the 30 intervening years (not really -- we're on DSM-V and they were on DSM-III in 1985). The point is, ASD is diagnosed differently now with a significantly wider umbrella, so the population that they chose were different than today's would be. (2) One of the hallmarks of ASD is language processing disorders. So it follows that no one should be surprised when an autistic child has problems understanding the question that is being asked or how to answer it. (3) Autistic people tend to be concrete thinkers, which when coupled with a language processing disorder can lead to not understanding the question being asked because they know that the marble is in Anne's box. (4) They are basing this theory on how an autistic child's brain works, not an adult's. (5)  To extrapolate their failure to answer this one question "correctly" to them being unable to identify the "thoughts, feelings, and intentions of others" is a stretch in my view.

So, there are a few ways to think about this. One, we can take it at face value and say that autistic people can't understand that other people have thoughts and feelings and ostracize them even further. Or we can say that autistic people have a more difficult time understanding other people; it takes them longer to interpret thoughts and feelings and may need to be taught how.

I see it more as a developmental delay. I'm interested to know if an autistic adult would answer the Belief Question correctly. All children need to be taught empathy: how many times do you tell your NT child to "be gentle" when petting a dog or a cat? Don't you take your child when they hurt another child and explain to them what they did and how that made the other person feel? Their language deficits and the fact that they are concrete thinkers can create a barrier to ASD people expressing empathy but that does not mean that they are incapable of it. I also see a need to help autistic people to understand motivating behaviors. Since they have difficulty in reading a person and their behaviors, it makes them easy targets for bullies and scammers.

In my last post, I specifically debunked this idea that Elias, because he is autistic, does not intuit or understand other's feelings. The reason that he reacted the way he did to me talking about autism is because he saw me upset about it months ago after he was first diagnosed. He specifically correlated talking about autism with anxiety and sadness. Of course I feel massively guilty about this, so I'm in damage-control mode right now. The point is that he gets it. He may not understand every emotion, but he is not unaware of, nor indifferent to, them.