Demystifying Stimming

When my son was first diagnosed, the psychologist labeled him with “subthreshold” autism, otherwise known as atypical autism or PDD-NOS. He initially didn’t meet the full autistic criteria because, at the time, he didn’t engage in stereotypy: stimming and echolalia. Back then, I knew very little about autism. The imagery my mind associated with the term subthreshold frightened me. It was as if my child was clinging to a doorway between (what I believed to be) two very different worlds.

Until recently, if someone looked up the definition for stimming, they may have seen: “purposeless” and “pathological” repetitive movements. For echolalia they may have read: the “involuntary” repetition of phrases spoken by others. Through the work of teachers and speech therapists, we’ve learned that echolalia is not only an important exercise in verbal expression, it is communication. Through research, and more notably through the writing of autistic people, we now know that stimming regulates the mind by self-stimulating or self-soothing. Nearly everyone stims in some way or another. Biting your nails, twirling your hair, and bouncing your leg are all common stims.

Pacing is my stim; it helps me focus. In my first round of college, when I was a bit younger, I paced when I wrote. Something within the movement brought clarity to my thoughts and precision to my writing. I composed entire papers and short stories in my head, word for word, before I finally sat down to type. It was rewarding, but I sometimes went too far. After particularly prolific nights when I rapidly paced until morning, I sometimes found that I had bruised the sides of my heels due to repeatedly turning on them.

These days, I find fewer windows of time to pace. When I do, my steps are followed through my home by playful children, nervous dogs, or a husband who believes he must ease some sort of worry. So I sit at my computer with my mind feeling—stifled. With each distraction and interruption, I often have to remind my children, “Let me do my work.”

Stimming can be an important tool for calming anxieties or aiding concentration. So why do we discourage stimming in autistic people? Is it the choice of stim that we find so disruptive? Does rocking or flapping single one out in a way that nibbling one’s lip does not?

Knowing all of this, I still have found myself trying to redirect my son’s stims at times, even when it is not self-injurious. Recently he was flapping and drumming two toys against a chair. His posture was rigid, he was humming loudly and sweating, and because of the duration and intensity of the stim, I impulsively told him to stop. He did, for a moment, and then he repeated the phrase, “Let me do my work.”

A friend once stated that “neurotypical is also a spectrum.” We don’t all think the same way or behave the same just because we share a common neurology, and neither do people who are autistic. I believe, moreover, that neurotypical and autistic are part of the same extended spectrum. There is no metaphysical doorway between one neurology and the next. No pure divergence between Normal and Other.

McCarthy: Autism and Vaccines

On Monday of this week, the ABC network announced that model Jenny McCarthy had been hired as co-host of The View. McCarthy has spent the last ten years publicly supporting the debunked claim that vaccines, specifically MMR, cause autism. At nearly every given opportunity, she promotes her books about how she “cured” her own son’s autism through diet and dangerous chelation therapy. Apart from her with-friends-like-that-who-needs-enemies brand of advocacy, McCarthy has also been credited with a body count due to the growing number of parents who choose not to vaccinate their children from preventable illnesses:

But who cares what Jenny McCarthy thinks? According to USA Today, about one in four adults in 2008 said they were familiar with McCarthy’s views about vaccines. Of those adults, 40% said her claims made them more likely to question vaccine safety. Now figure in her new platform: 3.3 million women, ages 25-54, watch The View. Along with a multitude of other news sites, Salon pointed out that “it’s incredibly irresponsible for a broadcast television network to think Jenny McCarthy should be on television — in a position where her job is to share her opinions — every day,” adding that her authoritative rants run counter to “the entire mainstream medical profession.”

Why do so many people still associate autism with vaccines? One reason is sort of like the expression “A lie can run around the world before the truth can get its boots on.” The Wakefield study at the root of this particular lie was proven fraudulent and formally retracted, but the general public has been slow to catch up. In addition, for every legitimate bit of scientific data on the internet about autism, one must sift through at least a dozen advertisements-as-studies. Selling “normal” is big business, and there is no shortage of fear-mongering by organizations that profit from autism “detox treatments.”

However, I believe well-meaning parents perpetuate the link between autism and vaccines. Early childhood is measured in developmental milestones (ex. Is your child doing X by X months of age?). These milestones are evaluated during a child’s pediatric doctor visits, which are scheduled to correspond with a child’s vaccination schedule. With autism, learning is non-linear. An autistic child may seem to be developing in a typical way and then veer off the expected course. Parents and professionals often refer to these stages as “regressing,” although that is not really an accurate term (some acquired skills may be put on hold while the child is learning new ones). So, a concerned parent might assume: 1) my child stopped meeting his developmental milestones after his 18-months check-up, 2) my child was given vaccinations at his 18-months check-up, so 1+2= 3) vaccinations caused my child to stop developing normally, which was later diagnosed as Autism.

Jenny McCarthy is replacing Elisabeth Hasselbeck, who has a reputation for her polarizing political views. At least with Hasselback the audience could easily identify her opinions as having a conservative Republican affiliation and consider them in a broader context. Most young parents probably know very little about autism or even vaccines, which makes McCarthy’s potential influence particularly insidious. As biologist Dr. Emily Willingham (who also has an autistic son) wrote, “We hate to see public health undermined by gassy musings from an uninformed ‘expert.'”

Autism and Hate Terminology

This week, the ASAN shared The Seattle Times news story “Autism ads raise ire, pulled off buses.” The ad featured a picture of a young boy, with the caption “Let’s wipe out cancer, diabetes and autism in his lifetime.” Autistic self-advocates protested the ad’s implication that autism is a disease or illness like cancer or diabetes that needs to be cured or wiped out.

The story reminded me of the Google controversy from earlier this year. Until very recently, if you googled “Autistic people should…” you might have been offered these search suggestions:

Another more recent variation of this search shows the need for continuing education about autism:

After autistic self-advocates and allies orchestrated a beautiful and successful Flash Blog promoting more positive search results, Google agreed to change the auto-complete suggestions. But did it fix the problem?

One article pointed out that “the search engine algorithm” is not the issue; the problem is “the frequency of the hostile search terms typed in by Google’s users” and “the societal attitude that produces all those searches.”

In my post “The Role of Autism Positivity,” I addressed how the language we use to discuss autism must change. Too often, organizations use war terminology with regard to autism: battling autism, conquer/defeat/destroy, or squash/wipe out autism. Some parent groups use phrases like “we hate autism” or “autism sucks.” If autism is not a disease but instead part of an individual’s neurological make-up, then it is not a huge leap from negative attitudes about autism to negative attitudes about autistic people.

The influence of language on our culture is one of the reasons why autistic self-advocates have led the movement to change “Autism Awareness” to “Autism Acceptance.” In her post “Autism Awareness?,” Ariane Zurcher also makes a good point:
“It’s interesting to note that the word awareness, when paired with the verb “to be” as in – be aware, is easily visualized and thought of as, “beware” which dramatically changes the meaning. It no longer is a word of benign information, but instead is a word of caution and fear.”

If we are truly considerate of how our words can affect people’s lives then perhaps one day consensus, rather than censorship, will yield friendlier search results.

[photo credit: 1st (top) “Autistic people should” search image by nj.com]

Imaginative Play

[Preface: My son (I’ll refer to him as PJ) was officially diagnosed as autistic two months after his third birthday, although he was receiving early intervention care through the prior year. Before, PJ’s father and I thought that perhaps he was just a late talker, and even upon diagnosis the psychologist assured us that since it’s difficult to accurately test very young children, there was a chance his diagnosis would one day be “reversed.” However, as he grew from a toddler to a child, differences between PJ and his peers became more and more evident.]

There are clearly a few notable differences between the behavior of autistic children and their neurotypical peers, but there is one so-called symptom that really bugs me: The Diagnostic Criteria for Autistic Disorder (see also criteria changes ) Part II/C–Delays or abnormal functioning in symbolic or imaginative play.

At a recent IEP meeting, the teacher stated that PJ had regressed from earlier progress of sharing toys in mutual play. Her complaint was that PJ was now interacting improperly with toys–“holding, shuffling, arranging or stimming with” the toys, rather than actually playing with them.

I once read something from a parent who said he viewed his autistic child as not much different from himself–just with some of the dials turned a little higher, and some a little lower. I relate to this comparison. When I was a child, I knew how to engage in the kind of play that was expected of me when friends came to visit, but it wasn’t how I preferred to play. When I was alone, I would gather my Barbies, simply hold each one, and mentally chart their existence. More than just naming the dolls, I would map their family trees and entire genealogies. I imagined their careers and the professions of their grandparents and the future professions of their offspring. I decided their favorite colors, biggest fears, where they traveled, and what they ate for breakfast, lunch, and dinner. And I designed all their spaces! Without Barbie furniture, I used scraps and bits or non-related toys to represent desks, dishwashers, books, and pans. By the time I felt prepared to act out what I had silently scripted, I was too exhausted and utterly satisfied to actually play with my toys.

To a critical outside observer, I would have appeared only to hold or shuffle my toys–certainly not anything imaginative. The careful planning of my Barbies’ homes, malls, and churches would have seemed a preoccupation with arranging insignificant items, and my desire not to be interrupted could have been taken as an abnormal response to social interaction (DSM:II/A). If anyone had cared to ask me what I was doing, I would have had the verbal communication skills to explain it to them. My son PJ would not.

Autistic children have special needs, but they also have the same needs as every other child. We must presume competence–not just for children, but for autistic adults as well, regardless of their ability to communicate. We all are more than the tally of diagnostic results that are measured by us or against us.

The Role of “Autism Positivity”

Autism positivity can be difficult to pitch. After my first-ever online comment regarding autism, I was attacked for stating that my personal experience had been more about discovery than tragedy. Many people believe that autism positivity dismisses the very real challenges associated with spectrum disorders; however, this is not the intent. Autism positivity is part of a movement to accept autistic individuals, as they are, and encourage a sense of self-worth. To achieve this goal, two important things need to happen:

The language we use to discuss autism must change. Tragedy-narratives and deficit-models contribute to the public’s infantilization or “othering” of autistics. When autistics are regarded as less than a person with typical neurology, it allows for harm, even in the name of treatment, as in the case of the Judge Rotenberg Center. High-functioning and low-functioning labels associated with autism are derived from a subjective ideal of “normal” and are also problematic. Most importantly, dialogues about autism should include and be guided by autistic people.

People should recognize that autism is not a disease.
It is a neurological variation. Many autistic people will need a variety of supports, and some will have serious impairments. But autism can also bring a tremendous set of strengths–intuitiveness, deeply focused thinking and attention to detail, enhanced pattern recognition (visual, auditory, numerical, social and scientific contexts), individualism, etc.–often referred to a the “upside of autism.” Autism is pervasive and cannot be cherry-picked. Treating an autistic person as though they need to be fixed can emotionally damage relationships, particularly between parent and child. Another important factor is for people to realize there is no credible evidence to support the claim that autism is caused by vaccines. (The 1998 study in question has been retracted for fraud, and the doctor–who has never been able to reproduce his results–was stripped of his medical licence, but in many ways the damage has been done.)

These two suggestions are just a couple of small steps in the right direction. The stigma and shame associated with disability, and autistic behaviors or “stimming” in particular, is troublesome, but it can be overcome. Autism positivity is about removing shame. Autism acceptance is not about denying disability or the need for accommodations; it’s about accepting that people are different. And that’s okay.