Sunday, September 20, 2015

Neurotypical Disorder Causes Problems for Some, Hope for Others


The following is a satirical work. All of the people are fictional. Any resemblance to real people is purely coincidental.

Sammy Henderson may seem at first glance like a typical six-year-old boy. He is very active, playful, and talkative. He shows a lot of enthusiasm when excited, such as by running where he's going or talking extremely loudly about areas of interest.

But Sammy is one of the 67 in 68 children who suffers from neurotypical disorder. Neurotypical disorder impedes the sufferer's ability to function separately from a social group, as well as limiting the logical thought process.

According to Sammy's parents, Peter and Caroline, Sammy has difficulties in establishing a functional routine, adhering instead to his habits of procrastination or refusal to accomplish required tasks.

Even something as simple as washing hands after using the bathroom can be difficult. Caroline tells me that Sammy often dishonestly claims to have washed his hands, even though she did not hear the water running. “It's difficult. I don't go in [the bathroom] with him anymore, so I can't stand over him and make sure he does it. I'm not really sure what to do.”

More complicated tasks often present greater difficulties. “It's always a chore getting him into bed,” says Caroline. “He knows he's tired, but he refuses to acknowledge it.” Instead, she often finds him creating battles between action figures depicting characters who have never actually met in any official storyline. “I don't know why he has the Hulk fighting Megatron,” explains Peter, “but he seems to enjoy it.”

Although unrealistic, Sammy's imagination appears to be quite complex. When I met the Hendersons, Sammy spent much of the visit insisting that he was a dragon, going so far as to explain when he was “breathing fire” at us. This belief persisted, despite explanations that he is not a dragon, and, in fact, dragons do not exist. These facts simply did not appear to enter his awareness.

Sadly, these behaviors are far too common among children who suffer from neurotypical disorder. Many parents will also report that their children will run into a street in front of cars, for no other purpose than to chase a toy. This is obviously contrary to common sense, which would tell us that personal safety should take precedence over retrieval of a toy.

However, not all believe neurotypical disorder to be something to be feared. Meet Debbie Garrickson. Her daughter, Emylie, recently started her sophomore year of high school. Like Sammy, Emylie also suffers form neurotypical disorder.

Last year was a particularly difficult time for Emylie's family. The Garricksons had recently moved, and Emylie began her first year of high school, with no friends sharing the same school.

“Emylie has always been really attached to her friends,” says Debbie. “She kinda got real depressed without anyone to hang out with.” Debbie explained to me the effect this had on the family. “She didn't join in any family activities. Sometimes she yelled at us for moving away from her friends, but she mostly just holed up in her room.”

It wasn't long before Emylie found new friends. Debbie encourages this coping mechanism. “Sure, she still doesn't want to play on family game night or anything, but at least she's getting out and doing stuff.”

In addition to encouraging her daughter to spend so much time with her friends instead of at home, Debbie offers a lot of freedom to Emylie. “Oh, I don't know [what they're doing]. Hanging out at the mall, looking at boys, whatever they do….Sure I worry, but what can you do? It's not like I can follow them around everywhere they go. You gotta let go some time.”

This approach to raising children with neurotypical disorder appears to show a lot of success. When they grow up, the symptoms of neurotypical disorder may impede children like Sammy or Emylie in jobs, such as scientific research or computer programming, that require logical thinking and attention to fine details. However, the inherent social skills and desire to succeed in a competitive situation may help in careers such as sales and professional sports.

As of yet, there is no known cure for neurotypical disorder. Many have suggested that the measles, mumps, and rubella (MMR) vaccine may play a key role in curing neurotypical disorder, but the vast majority of current scientific research suggests that there is no link.

Others believe that a high-gluten diet may reduce the risk of neurotypical disorder in children. Gluten may kill off harmful gastrointestinal bacteria that cause a high dependency on social interactions. There is little evidence to support this theory, but it may be worth further investigation.

Still others believe that neurotypical disorder has always existed at its current rate. The decline in prevalence may simply be due to our increasing ability to discern it from other, healthy types of brains.

Many other theories about the cause and declining prevalence of neurotypical disorder exist. Obviously, further research is required. My hope is that we can find the cause, so we can help children like Sammy and Emylie, and perhaps prevent other children from suffering from this disorder in the future.

Sunday, September 6, 2015

#AutismUnity


Columnist and autism advocate Steve Silberman recently published a column in the LosAngeles Times, in which he thoroughly criticized the actions of Autism Speaks, accusing the organization of not actually listening to the people they claim to be helping. I recommend reading Silberman's piece. He is a well-spoken advocate, sharing many views with the majority of the Autistic community.

In response, president of Autism Speaks Liz Feld wrote a piece the organization's blog, in which she attempted to refute the allegations made by Silberman, as well as calling for unity in the autism community. Much of the piece was spent seemingly confirming Silberman's criticisms, presenting them as positives. I do not wish to spend this post untangling those, or addressing the half-truths and outright lies embedded in Feld's writing.

Instead, I would like to focus my attention on the community's response to Feld's call for unity. On September 3rd, the organization BoycottAutism Speaks organized a message bombing campaign on Twitter, using the #AutismUnity hashtag, encouraging members of the community to voice their opposition to Autism Speaks' message.

I understand there is a certain irony to promoting unity by shutting out some people from the discussion. The truth of the matter is that no one has done more to leave autistic people and differing points of view out of the discussion about autism that Autism Speaks.

In fact, we do need to promote more unity within the autism community. There are multiple facets of the community, including autistic adults and children, parents, professionals, and researchers. All have something to gain from and offer to each other.

I've felt for a long time that autistic people should be at the forefront of the autism discussion. We're the ones who are being talked about, and it's our futures that are being decided. I feel that many of us can make a difference simply by allying ourselves and talking to parents, as well as becoming role models for autistic children, who will become the next generation of autistic adults.

Almost as important in the discussion as autistic people are parents. Aside from raising us to adulthood, and in some cases, much further, parents tend to learn a lot about the system that is designed to help us function in the world. As such, they learn about many of the problems in the system that many self-advocates are all but unaware of. Communication of these problems is essential to make progress and improve the system.

I would also encourage professionals and researchers to take part in the community. I personally know some professionals who have done this. They appear to come away with a better idea of what autistic people need for our daily lives. It's also much harder to not think of members of your social circle as fully fleshed out human beings, as appears to have traditionally been a problem among researchers.

This kind of unity requires that we abandon the demeaning types of messaging promoted by Autism Speaks. We need to stop thinking of autism as a disease or affliction. There is no room in unity to say that some of us are “barely living.”

It's time to celebrate the diversity that exists within our society. We need to embrace autism as a part of the larger human family. Only then can we create the accommodations necessary for equality.

Let me leave you with a few examples of #AutismUnity from Twitter:

Autism Speaks, stop speaking for people who can already communicate 4 themselves! #AutismUnity means it’s time to sit down and LISTEN!
#AutismUnity means we can't let the vile things Autism Speaks says about us and our neuro-siblings go unchallenged
#AutismUnity: Respect, Dignity & Acceptance for #ActuallyAutistic people, the opposite of what Autism Speaks does to us, without us!
#AutismUnity shouldn't mean erasure. Autism acceptance doesn't mean giving up on learning coping or self care skills. We can do both.
#AutismUnity is sitting with an autistic friend, stimming in sync. Being who we are. Supporting each other. Autism doesn't stop friendships
#AutismUnity is autistic people talking back to @AutismSpeaks, an organization that claims to speak for them. It's time to listen.
#AutismUnity is acceptance, accommodation, celebration of the diverse individuals that make up the autism spectrum. It is not cure culture.
#AutismUnity means listening to Autistic people. We should be leading the conversation about our own lives.