‘Tis the Season

A story came across my timeline on Facebook this morning about Toys R Us stores in the United Kingdom* planning a “quiet hour” of shopping for individuals on the autism spectrum (see the original story here). I expect that we’ll see more stories like this each holiday season, beginning with the stories I have already seen about Halloween accommodations and continuing through the annual autism-friendly Santa visits. I am both thrilled and frustrated by the growth of these events.

You’re probably wondering why I would feel any frustration over what is obviously a well-meaning plan for inclusion, and part of me would agree with you. I believe that any effort which involves adapting to others’ differences and allowing them to have the same experiences as their neurotypical peers is a good thing. Every story like this raises awareness of the needs of some of our population. Notice however, that I am not saying it necessarily serves the needs of the autism population.

For some, it does; but not for all. It has been said that if you’ve met one person with autism, you’ve met one person with autism. Making the connection between sensory needs and autism, while understandable, is also reductive. For example, Cheeks is hypo sensory in some aspects and hyper in others (hypo sensory being under sensitive to stimuli and therefore one seeks sensory input, hyper sensory being overly sensitive and one avoids it). Creating an environment for him such as the one described in this article would be both a hit and a miss.

The larger issue, in my opinion, is making any assumptions about the needs of someone with autism. It’s true that there are diagnostic criteria for autism, and so a certain set of expectations about the needs of these individuals is fair enough. But it’s worth considering too, that there are many people with sensory needs who are not on the autism spectrum, who would be well served by this offering but don’t read further than the word autism in the title.

quotescover-jpg-30Much like not everyone with a physical disability needs a ramp, not everyone with autism needs low lighting and quiet. It’s incumbent on a host such as Toys R Us and others to make the offer, but then to allow the potential audience to self-identify whether it meets their need. Calling it an autism event sets it aside as different and separate, which is the opposite of inclusion.

True inclusion will come when we see the diversity of any population and address varying needs, rather than labeling it and by so doing, inadvertently demonstrating a limited understanding of the need. When those within the autism community create an event such as this, it’s called “sensory friendly”, not specifically for autism. Sensory friendly is created to address both hyper sensory and hypo sensory elements.

I truly applaud the people and organizations that show a heightened awareness of neurological diversity. I will also continue to advocate until this is the rule rather than the exception. Toys R Us and others are making great first steps.

* This event is currently only planned in the U.K., Toys R Us has not yet committed to doing anything similar in the United States or elsewhere.

The Case for Unconventional Therapies

Cheeks' receiving traditional behavioral therapy in social skills and following directions.
Cheeks’ receiving traditional behavioral therapy in social skills and following directions.

There are lots of reasons why parents of autistic children might pursue unconventional therapies. One of them is because the concept of proof—or lack of proof—can be transient, things that are at one time believed to be proven can be disproven (bloodletting, anyone?). For the purposes of this post, I am using the term “unconventional” to mean treatments that are backed with less or inconsistent scientific evidence. Rather, they are supported by smaller studies, anecdotal evidence or personal accounts.

Unconventional treatments for autism range from the innocuous (such as a gluten-free, casein-free diets), to the illegal (such as stem cell treatments which must be delivered outside the United States). Some of the more extreme treatments I have learned about include:

  • Parasitic Worms. Introducing parasites into the intestine on a short-term basis to boost the immune system.
  • Bleach. Diluted bleach ingested orally or via an enema, multiple times a day, to eliminate bacteria, parasites, yeast, or heavy metals in the digestive tract.
  • Lupron. A testosterone-inhibiting drug. Based on the belief that testosterone magnifies the toxic effects of mercury in the bloodstream.

These are just a few examples, there are many more. In the abstract, this list probably seems pretty horrifying and unconscionable. I chose the items on this list specifically because they seem horrifying, most alternative treatments are not this scary. We have not tried these therapies on Cheeks, although we have tried things that are less invasive than those listed above. But would we ever try something more extreme?

Consider this: your child is diagnosed with a life-altering disorder. He or she spends their days in physical discomfort, filled with frustration, and without personal safety. He or she is unable to access things that typically bring joy, such as friendship and education. No one can tell you why this is, and no one can give you a clear treatment plan that will help. Every solution you pursue comes with little or no change, and even when you see progress, it comes in small steps that are painfully slow to arrive. It’s all enormously expensive, and even those treatment options that are mainstream are still not covered by insurance. Everyone in your family is affected on profound levels, whether financially, emotionally, or socially. At the same time, your peer group that is facing similar challenges tell stories of success with treatment plans that your doctor never offered you. You easily find supporting evidence of these stories, even though the studies may be small ones. Can you say with certainty that you wouldn’t act on this information?

quotescover-JPG-15We follow certain rules when choosing new therapies for Cheeks. One is that we must first be as sure as possible that they will not harm him, physically or emotionally. The other is that we only try new things one at a time, so that we can tell which interventions are working and which are not. Furthermore, I believe that any unconventional therapy is best served in conjunction with more thoroughly tested options.

I also don’t believe that every symptom of autism needs to be “fixed”. Cheeks is already perfect the way he is, I am reminded of that every single day. There is greatness inside of him, I know that for sure. I don’t want to alter that as part of shaping him into the kind of person the world expects him to be. I, like any other parent, only want him to be able to live a happy, healthy life.

But seeing your child sad, in pain, or hurting himself daily—these are the things that make parents desperate for help. Desperate people do desperate things. And sometimes, desperation is the motivation needed to make a difference.

Frequently Unasked Questions

Occasionally I get a question about Cheeks that is asked delicately, as if it needs to be approached with extreme care. I understand the impulse, but in my case it’s unnecessary to hesitate. It also occurs to me that questions are like pests. For each one I hear, there are likely many more that I don’t. For that reason, I’m going to use this space to publicly answer those sometimes-tentative questions. I’m calling it my Frequently Unasked Questions (I was tempted to use the acronym as is done with FAQs, but decided against it).

Today’s question: “What is Cheeks’ level of functioning?”

I think this question gets asked because people are seeking an easy way to summarize Cheeks in terms they can understand. However, as is the case with most labels, it doesn’t capture nuances. I usually answer by saying he’s moderately functioning. I do that because it’s like calling someone middle-class, it allows for a lot of unstated interpretation. It’s concise, but it doesn’t really answer anything.

The whole answer is, in some diagnostic criteria he measures on the low end, in others he measures on the high end. In order to answer the question fully I would have to break his individuality down into symptoms, which I won’t do.

A little background on the diagnostic criteria of autism: When Cheeks was diagnosed, it was under the terms of the DSM-IV. That’s a manual published by the American Psychiatric Association which classifies mental health disorders. That publication included a variety of named diagnoses within the autism spectrum, such as Asperger syndrome or PDD-NOS. It was superseded in May 2013 by the DSM-5, which is currently in use. The DSM-5 eliminated the varied labels in the spectrum, referring instead to anyone meeting the diagnostic criteria as simply having autism, and then separating by degrees of severity. That means there isn’t anything called Asperger’s anymore (although many within the community still prefer to identify with the word).

This is relevant information because historically, the term “Asperger’s” was used interchangeably with the term “high functioning autism” (HFA). HFA was never a diagnosis, it was a colloquial term that meant Asperger’s. The main difference between HFA/Asperger’s and other forms of autism was speech skills. It didn’t address any other symptom. Someone with Asperger’s could still have other, more severe symptoms than someone who was described as lower functioning on the spectrum.

quotescover-JPG-97There are several symptoms commonly seen with autism, but not all of them are present in every individual. They may include a lack of understanding of social cues and nonverbal communication, stereotypical behaviors (think obsessive and repetitive), speech impairment, hypo- or hyper-reactivity to sensory stimuli, inflexibility about routines or rules, etc. That’s not all of them, just some examples.

Cheeks does speak, but with significant impairment. He’s very empathetic, but social cues are hit-or-miss. He doesn’t really have repetitive behaviors, but he does develop focused obsessions. His self-injury and tantrums can be severe. He makes great eye contact and he’s affectionate. I could go on, but you see the disparity I’m demonstrating.

I also have to consider the message that labels like low and high functioning send. If I call Cheeks high functioning, I’m disregarding the very real and significant difficulties he has. And if I call him low functioning, I’m disregarding his current and constantly developing skills.

There’s no quick yet descriptive way to label anyone on the autism spectrum. In fact, there’s a growing resistance within the autism community about whether to use labeling terms at all. If you’d like to know more about that, you can read a good explanation here.

What I am most mindful of is that these are real, multi-faceted people, and we’re trying to use one term to describe all of their skills and deficits. That sounds like the results of a Facebook quiz, not a genuine and appreciative way to discuss a person. It’s better just to say to me, “tell me about Cheeks”. I promise not to spend hours on the answer, as much as I’d like to. And in return, I’d love to hear about someone you love, too.

[If you have a question about autism you’d like me to answer here, please use the “Contact Me” link on the top menu.]