Friday, October 28, 2016

The Importance of Service Dogs and Why We Should Include Them and Their Handlers in Our Community

Amber Perry wrote a wonderful article about the KindTree Autism Rocks camp, a fun and relaxing trip where autistics "can just be themselves, free to stim, socialize with others without having to worry about ridicule or having any kind of authority forced on them, eat food that suits their dietary needs, enjoy plenty of arts and crafts and other activities to ground them and exercise their never-ending minds." I've gone twice before and it was a lot of fun, just as her article describes. I was excited to volunteer this year. I want to get more involved in the autism community, and of course thought this was a great way to do it. I was, however, disappointed to find out I would not be able to volunteer, or even go at all. It is upsetting to find out that a community that prides itself on being accepting of all types of people, can truly fail to be.

I wasn't allowed to go because the camp doesn't permit service dogs.

          When I attended camp years before I didn't have my service dog yet. A service dog is a dog which is trained to do specific tasks that aid a disabled person. A service dog, by law, must be allowed to go with their owner anywhere the public is allowed. Camp Baker Boy Scout camp is where KindTree's retreat is held, and due to some loopholes in the law the Boy Scouts are legally able to ban service dogs because they identify as a private club. This is like banning a person with a cane, or a wheelchair, or insulin to treat diabetes. And because the Boy Scouts have decided to grant KindTree’s Autism Rocks camp access to Camp Baker, it leaves little leverage for KindTree to advocate on behalf of its community members for ADA law without risk of dislodgement.

          Service dogs are a life-saver for thousands of people with a variety of disabilities. These dogs can be trained to smell the breath of a diabetic in order to assess their glucose level. They are trained to open doors, pick things up, aid in balance, alert people of imminent seizures, and call for help. They can provide a focus point for someone who is overwhelmed by their environment or events going on; this is called grounding and it's what my dog does for me. From an outsider’s view it looks like an excited puppy jumping up and down, being extremely adorable, and licking my face continuously. But even though T’Pol is an incredibly cute dog she has been trained to act that way. She is small, and easily fits onto my chest where she is trained to lay down just beneath my chin so she has perfect access to kiss my nose. When T’Pol does this I can focus on her, ignore the world, try to get my head together, and enjoy life.

We are all familiar with meltdowns. Sometimes our brains just can't deal with the overload of information the world offers. I have found, personally, that I can't focus on just something, but my sentient 3lb ball of furry energy can force me to focus by going, "Hey! They don't matter! Look at me! I'm so cute and soft!" I can sit and concentrate on her and then after a short time get back in there and deal with that horrible bright light called sunshine and those awful florescent bulbs. I can cope better when my neighbor decides he enjoys blasting "music" with overly heavy bass at odd hours, and I can make it through all the different kinds of social interactions I’m presented with without shutting down and running away. A simple addition of a fuzzy friend in a blue vest (not required by law, but often used to mark service dogs) is all I need to calm down instead of freaking out to the point of exhaustion, resulting in the need to sleep for the next 6 hours or more.

Not everyone on the autism spectrum uses service dogs, but many do for issues caused by autism as well as other disabilities not connected to autism. They are part of the autism community, but they are not welcome at this amazing, so-called accepting retreat so many of you look forward to all year. The Boy Scouts have been in the news numerous times for discriminating against a variety of people. Most likely you have heard about the lawsuits pertaining to the LGBTQ community, however there are others affecting wheelchair users, blind and deaf folks, as well as Down Syndrome and other disabilities.

I understand why KindTree felt they couldn’t press the Boy Scouts to support ADA law so I could attend this year. They had all of you to protect too. The needs of the many can certainly outweigh the needs of a few, but sometimes the needs of a few represent the needs of the many, and their rights. Should we be having our most beloved event held at place owned by such an unaccepting, discriminatory group? I don't have a solution. It’s a tough thing; where else would we have the retreat? I am sure it would take some searching, but I have to believe there are other places where everyone truly will be accepted.

As we continue to learn and advance and grow as an autism community, so will the tools we use to help us navigate life, like service dogs, giving us a wider degree of access and security in our crazy world. I will not be the last person to be denied access to an otherwise safe and accepting place I have every right to be. I sincerely hope we as a community find a path that allows the freedom we’ve fought so hard to find come to fruition for everyone, fairly and equally.

Sunday, August 7, 2016

What Autism Is Not: 10 Myths About Autism

Autism awareness has increased several times over in the last two decades. Autism is now a household word. This awareness, however, has not significantly decreased some of the misconceptions about autism.

It's easy to find material about what autism is. You probably already know a fair amount. It's a developmental disability marked by deficits in communication and social navigation, as well as displaying intense, narrow interests.

Unfortunately, it can be more difficult to find information about what autism is not. That's what I would like to focus on in this piece. I've chosen ten of the most destructive myths about autism.

1. Autistic people do not experience empathy.

Let's start with one of the more pervasive myths. This is still frequently quoted by experts when describing autism. However, it's simply not true.

Empathy is usually described as the ability to copy another person's emotions. Doing this correctly requires at least some understanding of how th other person's mind works. That is always more difficult when the other person has a different neurotype.

It may appear that autistic people have more trouble with that because most of the people around us have minds that work different from ours. Once we can learn how the neuronormal mind works, empathy becomes much easier, and in fact, it tends to be easier with other autistic people.

2. Autistic people do not experience emotions.

Perhaps the root of this myth has to do with the fact that autistic people, especially children, do not tend to use nonverbal communication the same way as the people around them. This means that we tend to show emotions in different ways that most people are not used to seeing. In addition, the same situation will often trigger different emotions in autistic people from what it might cause in a neuronormal person.

3. Autistic people can't form relationships.

From what I can tell, most autistic people do place more importance on our own personal interests than other people. However, that does not mean that relationships, whether familial, friendship, or romantic, are any less important to us.

Don't forget that a relationship is a two-way process. If an autistic person is interested in pursuing a relationship with a person, and the other person is willing to reciprocate, autistic people can and do form meaningful relationships with others.

4. Autism is usually accompanied by an intellectual disability.

There have been times when the majority, or even all, of recognized autism diagnoses came with an intellectual disability. For a time, that was even part of the definition. It was reinforced by the fact that autistic children were often institutionalized and placed in a setting where learning opportunities were not present.

With the recognition of “high-functioning” autism and the addition of Asperger's syndrome, we know that autistic people are often quite intelligent. In fact, upwards of 70% of recognized cases of autism have no intellectual disability.

This has also led to a belief that all autistic people are geniuses, which is equally untrue. We are all individuals, and each of us is different. Autistic people exist along the entire range of human intelligence.

5. Autistic people are all the same.

This usually takes the form of, “I've seen [insert TV show or movie here],” or, “My [insert relation here] is autistic, so I know all about autism.” It can even take the form of, “I'm autistic, so all autistic people can be like me.”

The truth is that there appears to be several different kinds of autism. Even within that, we're all individuals. Each of us has different abilities and different needs. Some of us struggle with things that others find easy. A common saying in the Autistic community states that “if you know one autistic person, you know one autistic person.”

6. There is a normal child trapped inside an autistic shell.

This can be a particularly destructive myth. It's typically quoted by those claiming to provide a cure or a miracle treatment, playing on parents' desperation. It often leads to parents focusing so much on trying to save their child from being swallowed up by autism that they forget to build a relationship with their child.

The truth is that building a relationship is the most important thing you can do. Nurturing the child's interests, planning activities with the child, and just generally having fun are the best ways to cause the child to open up and grow as a person. The child will always be autistic, but that doesn't have to be a setback.

7. There is something in the environment that caused autism or aggravated symptoms.

Whether it's vaccines, lead, smoking while pregnant, or any number of others, something must have caused this autism.

In all likelihood, autism appears to be genetic. Unfortunately, the myth of an environmental cause often diverts resources away from needed supports and services, and directs them instead to trying to find the source of the autism. It can also lead to some off the same problems caused by myth #6 in this list.

This myth is also built on the next one:

8. There is a massive autism epidemic.

Autism rates have increased from 1 in 10,000 in the 1960's to 1 in 68 now. That's a huge increase.

For this, it's important to recognize the difference between autism and an autism diagnosis. The definition of autism has increased dramatically since it was first described by Leo Kanner. The vast majority of us are in a part of the spectrum that wasn't even recognized in most of the world until the 1980's, and wasn't broadly known by professionals until the 1990's.

Furthermore, several studies have shown that when you use consistent definitions across the generations, there appears to be no significant increase.

9. Autism is a childhood disorder.

Autistic children grow up into autistic adults. It should seem obvious when you think about it. The problem is that most people don't think about it. That can lead to inadequate services for adults.

10. Autistic people can't achieve success.

This is usually based on the idea that there are no benefits to autism. We have plenty of advantages that we can use. Logical thinking, intense focus, and attention to detail, just to name a few. Additionally, as I've said before, we're all different, and we all have our own strengths and weaknesses. If given a chance, there is no reason an autistic person can't succeed in life.

I've had to condense most of these to fit them all in one piece. If you want to know more about any of them, keep checking back, or read any of the many other autistic bloggers out there. I look forward to exploring these myths further, as well as other autism-related thoughts, in the future.

Tuesday, May 17, 2016

Autiism in girls vs boys

            At he risk of sounding sexist, when I read this article my first thought was of course they are going to look at boys more than girls. Girls are supposed to be quieter and shy. Boys are expected to noisy and active, if they don't, parents and doctors rush to his aid and try to fix the problem, lest the boy grow up to be different. There's a lot of social politics about how a child develops, especially boys.
            Another problem the article points out, is how long it took for girls to be properly diagnosed. They just didn't see the significance of the girls behavior. Again, less attention is paid to girls.
             Think I'm exaggerating? I wasn't diagnosed until I was fifty, the psychologist merely confirmed what I told him and despite having friends who had it or had children with ASD, no one saw it in me.
             "But you act so normal," they explained when I questioned them. Yes, after decades of imitating neuronormals as a coping skill.
            The Lesson here is that adults need to get past gender expectations and pay attention to girls as much as boys or it will lead to the stress of undiagnosed girls struggling to develop or fit in.

Sunday, October 18, 2015

Aren't We All A Little Bit Autistic?

You seem pretty normal. Aren't we all just a little bit autistic? What is normal? Labels go on soup cans.

You may have heard some of these before. If you have an autistic friend, you've probably even said them. In all likelihood, you meant to be inclusive and open-minded. After all, your friend isn't that different from you. Right? It doesn't make sense to slap a different label on them.

While this mindset doesn't go entirely unappreciated, many of us in the Autistic community feel that it's dismissive of the different challenges we face on a daily basis. Even those of us who might appear on the outside to be mostly normal have worked hard to be able to function in a neuronormal world.

For many of us, the difficulties are primarily centered around communication and social norms. These are things that do not come naturally to us. That's not to say we can't learn those skills. It just takes conscious effort for us.

The truth is that we autistic people are very well aware of our differences. Most of us have come to terms with them, and are not ashamed of them. Most of us have no problem with others acknowledging that those differences exist. In short, there would be no word to describe the differences if the differences weren't there.

What about severely autistic people? Surely it's a compliment to say those of us at the Asperger's end of the spectrum aren't like them?

In a word, no. Don't forget that we have the same diagnosis as them, usually for many of the same traits. To compliment someone by saying they aren't like severely autistic people is to say that it's more preferable to be 'normal.' Such statements can make us uncomfortable sharing more about ourselves too.

And let's not forget the people we're making the comparison to. Let's imagine for a moment if someone were to say that at least their friend isn't like you. My guess is that you would find that insulting. It should always be assumed that severely autistic people have feelings and know what's being said about them.

There does appear to be one time when no one seems to want to include themselves on the autism spectrum. That would be immediately following a mass shooting, such as the recent tragedy in Roseburg, Oregon.

Thankfully, the news media has made a decision to not mention autism in a story without some degree of relevance. When autism is mentioned without an explanation of relevance, most people will determine the relevance on their own, even when there is none. For example, speculating if a mass shooter is autistic may lead people to believe that autism caused the shooter's actions.

Unfortunately, most pundits and bloggers don't hold themselves to the same standard. In an attempt to understand what led a person to kill several people, some will attempt to diagnose the shooter. Not only is this impossible to do simply from a news story and some vague descriptions from friends and family of the shooter, but it's also highly irresponsible.

Making unprofessional autism diagnoses for mass shooters in an attempt to understand their actions has in the past caused autistic people to be afraid to go to work or school out of fear for how they might be treated. It has also spawned organizations, such as Families Against Autistic Shooters. The world this creates, even though it's temporary, only adds to the difficulties of living with autism, while doing nothing to promote understanding.

In summary, we in the Autistic community have no problem with society recognizing differences between us and those surrounding us. The differences are very real. The problem only comes when those differences are used to explain unrelated behaviors.

Ignoring or fearing difference only drives people further apart. In order to fully integrate the human family, differences need to be understood and celebrated. This is the part where I call for autistic people to be proud of yourselves and educate those around you, as well as for non-autistic people to talk to and learn from your autistic friends and family members. After all, we might have differences, but we're all human beings first.

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


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.