Autism, abuse and bullying: It must stop now!

Autistics are no strangers to abuse. Its not something I talk about but when you have a disability you are either subject to acts of extreme kindness or extreme cruelty. The struggle for acceptance comes not only from within but from without as well. What we perceive to be normal behavior is subject to our own life experiences. Thus everyone’s perception of normal behavior is different. It is those differences that set most if us apart but they also unite us in a way that we can’t imagine. When we see cruelty we are called to act. In a way, its constant struggle against its own depravity is humanity’s most noble feature. Yet it can be it’s most heinous trait when we lose sight of our decency.
The loss of human decency is evident in the way that culturally the disabled are treated.
For autistics of my generation, abuse was common in schools and in many other places. In 1994 not much was known about Autism. Dr. Tony Atwood had just written his first book called Asperger’s Syndrome. In 1994 I was in my sophomore year in high school, but I highly doubt that my fellow classmates had read his book or any book for that matter.
High school is a time when bullying is common. Anyone who doesn’t fit the socially approved norm of what is believed to be acceptable behavior is a target, and I had a big bull seye on my back.
I was a tall shy and socially awkward kid who spent most of the time in the library researching Greek mythology which was an obsession of mine. I preferred to be in the library as it was my escape from the hell that was high school.

I don’t like to discuss this subject because I still carry a lot of scars from that period and some wounds that are still healing. I suppose what got me started on writing this blog was seeing a showing of the Goonies on TV recently. It was one of those characters in particular that made me write this: Sloth. Yes. Sloth.

Sloth 

It was almost on a regular basis that I would hear fellow students calling out “Hey you guys” one of Sloth’s catchphrases whenever they saw me.  That was one of my many cruel nicknames. If they weren’t calling me  Sloth, they referred to me as Baby Huey the big dumb duck from The Looney Tunes Cartoons.

It was either Baby Huey, Sloth or Indiana Jones. Why Indiana Jones? Well, I like the stereotypical teenager had really bad acne, so I was prescribed Accutane. One of the requirements is to avoid sunlight at all costs. To achieve this I wore a fedora.That brought on kids humming the theme of Indiana Jones every time they saw me.

The bullying only got worse after that. One day in art class, I took my hat off and went to talk to the teacher. When I  came back my hat was gone. I looked around for it but could not find it. Eventually the teacher got involved because no one would admit who took it. She told the class if they did not return the hat in 5 minutes, the whole class was going to get detention. She and I stepped outside and she asked me how long this has been going on. I told her since the beginning of freshman year. When we stepped back inside the hat was returned. I found out later that one of my classmates ad thrown it out the window.

I assume the teacher Mrs, Gerardo must have told Mr. Twomey the school’s Vice Principal. Mr. Twomey was a clean cut Irishman who had eyes like lasers. Everyone at the school was afraid of him. He was the school’s disciplinarian and he was as hard boiled as they come. He called me into his office and I went there with as much fear and trepidation as a cat on a hot tin roof,  Whenever a student was called into his office that was it. Game over. leave your life at the door. You weren’t getting back because it was over. Imagine my surprise when he started asking me to describe al the instances of bullying and who the culprits were. He handed me a yearbook and I went through it and pointed my bullies. I must have listed at least to 20 of my fellow students.

It was also around that time that the school nurse Mr. Day went to all of my classes on a day I was out sick and yelled at my classmates and told them I had Asperger’s Syndrome. After I returned my classmates were asking me with rather shell-shocked and shameful expressions on their faces what Asperger’s Syndrome and I did not know how to explain it to them. With that one act, the school environment changed dramatically. It was at that  point  that I learned the power of advocacy yet I was not ready at that point to start advocating.

Now I ask when is the bullying going to stop? When is the ignorance going to end?

My rift with some autistic self-advocates

I had to unfollow/unfriend lots of autism self-advocates on social media  because of the hate they spread. I make no apologies for that. Tolerance goes both ways.
And by autism advocates I mean autistic self-advocates who cannot separate the good parents from the bad.
These autistic advocates have taken to vilifying all parents of autistics unjustly.
Then again many autistics have experienced bullying and abuse at the hands of non-autistics and have grown to hate them as a result.
These advocates ask for compassion and often give none in return. I prefer to love people and to spread love.

I have seen many self-advocates take this stance: if you don’t agree you are a terrible bigoted person and you should be quiet.

One of the biggest issues is that of the Kelli Stapleton case.
The negativity that comes from the some autistic self-advocacy groups. is troublesome. I am an autistic self-advocate but I don’t fall in to this victim mentality that some have fallen into. I have never met a parent who is perfect and I know for a fact that most parents are trying to do what is best for their kids. That being said I also understand where most of them are coming from. Many of them have been abused, beaten, bullied, and victimized by non-autistic people which has led them to be angry and possibly have PTSD.  They are so angry that when they see things like this it brings back many of the experiences that were negative and painful and they assume this defensive position that talking about why Kelli Stapleton tried to kill her autistic daughter Issy is the same thing as condoning it. Its not. Trying to understand something like this is done simply to prevent it. Parents often get little to no assistance. These autistic self-advocates often don’t realize the adverse affects their behaviors can have on their families and loved ones because of their mindblindness. If i was in Kelli Stapleton’s position I cannot say I would have done the same thing, but I can say I understand why she did it.

When are autistic self-advocates going to stop blaming parents for everything? Just because they had bad experiences in life doesn’t mean every parent of an autistic child is terrible.
Parents of autistics are our natural allies and not our enemies. As long as we are at each others throats we will gain nothing. A house divided is a house that will fall.

As my friend Rochelle Dolim said:

“…they can’t educate against ignorance and hate by using anger and hate and expect any outcome other than perpetuating those negative feelings. Not much longer than a generation ago, minds that are now identified as being on the spectrum were an integral part of getting man safely to the moon and back. Only the perspective of autism has changed.”

I was raised with the idea that having a disability was not something to be ashamed of. I watched as my mom worked tirelessly to get my a diagnosis and taking me to the doctor on a regular basis after I got it. I watched as she advocated for me struggling against a system that wanted to deny me services and that I was even autistic. I watched as she took my case to against the Regional Center in California to court. The case set a precedent in California and and was one of the first times that Aspergers was legally recognized as autism because that was the issue of the case we filed in 1997.  That’s who my mom is and that is who most parents of autistic children are. They are people who will fight to the ends of the Earth for their children. And as their children get older they will fight alongside them.

Not Wanting to Pass for Neurotypical.

I was reading a comment on a Facebook group where a mom was asking how to tell her Autistic daughter that no one was coming to her birthday party. She had invited 30 people to her daughter’s party and didn’t know how to tell her. Seeing that bothered me and reminded me of many of my own birthdays a child and as a teenager.

Autistics are highly intelligent but socially awkward in most cases and sometimes we do things that make other people uncomfortable or give us strange looks. And that leads to social isolation and depression. Autistics have a high rate of depression because of this isolation. We are not always isolated because we want to be, but because we don’t read social cues and often are faced with an lack of understanding from neurotypical people who, because they don’t understand us, often exclude us from social activities. Human nature is to discriminate and segregate that which we don’t understand.

In order to survive in this world we Autistics are expected to pass for neurotypical. In other words, hide who we are. We have to learn proper behavior in classes or in groups or in one-on-one sessions with behaviorists.  Autistics like me take behavior classes to learn acceptable behavior when neurotypicals aren’t taking classes in tolerance. We basically have to learn to behave and think like a neurotypical person. That is not always easy for us, but it is not impossible. It takes a lot of energy to behave like an NT person. We can be charming and friendly, but it takes effort on our part.

Unfortunately this places an undue burden on us and it’s not something I am willing to do.

Behaving like a neurotypical person also means needing to learn how to think as a team at times. The idea of thinking as part of a team is foreign to us, but it is not impossible for us to learn. It just takes time and a bit of creative thinking and a bit of patience from neurotypicals. Still, understanding the deficits Autistics have in this area can go a long way to making the process easier. When there is no understanding it can be frustrating for us. I for one don’t always understand when people don’t know much of anything about autism. I suppose this is similar to what happens to neurotypical people who don’t know anything about autism meet an autistic person for the first time.  I can imagine how frustrating it can be when we don’t respond to something they have said because we are so fixated on something. That level of concentration can be a real boon especially because it allows us to pay attention to minute details especially when doing the research. I can also understand when say exactly what we are thinking how it can make neurotypicals uncomfortable. Autistics are notorious for their lack of guile especially when it comes to their thoughts and feelings. Neurotypicals seem to very good at not letting their thoughts be known especially when they know that by saying what they are thinking could prove disastrous.

That singular fixation we Autistics have can be the cause of our social isolation. I believe that its important to look up from what you are doing every once in a while and say hello to the people around you. That way people will at least know that I am making an effort to be social. Life is only enriched through the connections we make with other people. Making friends takes effort even for neurotypical people, but it takes an even greater effort for me. I know that in my case I have to make a conscious effort to be social with people and learn the rules of the social road.

I often forget that much of the strife Autistics experience in life is caused by the fact that we expect neurotypicals to understand us and force us to act more like them. I, for one don’t believe that most of the neurotypicals I have met are inherently mean or intolerant. I think autistics don’t understand the world of the neurotypicals as much as neurotypicals don’t understand our world. This lack of understanding on our part leads to us feeling that the neurotypical world is inherently unjust when in reality we just don’t think in terms of greys like they do. The expectation that all people will react the same way is an unrealistic expectation that develops as a result.

I think autistics have to spend lots of time being forced to be things that they are not. We should be allowed to be ourselves but often we are not.

Autistics have difficulty understanding abstract thought. I for one am no exception.  Living life is an abstract thought. There is a lot of unknown in the world and I am not afraid to try and understand the abstract world I live in with my objective and factual mind. Yet, as a person with autism, I see and experience too much ignorance. It frustrates me. I wonder when it is going to end. Then I realize its not when it will end that matters but how it ends. The manner in which you face injustice is the manner in which it ends. If you handle it with dignity and grace it will end quietly. The way to make people accept you is to be yourself and to accept them in return.

If I had a son….

If I had a son, he would most likely have Asperger’s Syndrome like me. This is what I would tell him when he asks how to live in a non-autistic world:

“Living with Asperger’s Syndrome is difficult. It can be frustrating not knowing if people like you because they use body language to convey their thoughts instead of just saying what they feel. This also makes it worse when people lie. It comes easily to non-autistics to lie and cheat and take advantage of autistics and non-autistics alike. Most people who are not autistic are cowards. They chastise and mock anyone who dares to be different. It is hard for them to accept you because they can’t accept themselves. The ones that do dare to be your friends are special because they are brave. They are brave enough to be different. They are brave enough to accept your differences despite what people will say. I say to you ignore the nay sayers and the doubters. You are capable of achieving your goals. It may take you longer but you will get there. Why rush? Life is wonderful. Enjoy it. Let people hate you. They are just jealous of what you can do. They are just jealous of the way you look at the world. If people think you are incapable of being useful and productive. Don’t let them deter you. People with Asperger’s have to adjust to a world that refuses to adjust to you. It is how you deal with this selfish injustice that defines who you are. I would rather have Asperger’s than not have it. Be proud of who you are.”

I just wish my parents had said this to me.

Autism Reporting: Know the basic facts.

Autism reporting: Know the basic facts

By Robert Moran

In December 2012, a young man walked into Sandy Hook Elementary School in Newtown, Conn., and killed 26 people, 20 of them children. We later learned that he’d killed his mother before going to the school.

His many issues relating to social isolation came out in the following months, including the fact that he had Asperger’s syndrome, which is an autism spectrum disorder.

As an autistic person, those subsequent headlines startled me, and not just because innocent people were killed. I talked to some people online after the shooting, and this was the first time some of them had ever heard of Asperger’s syndrome. They first heard about it as a result of a mass shooting at an elementary school.

To read more click here:  http://www.spj.org/quill_issue.asp?ref=2110

In Memoriam: A Eulogy for My Mom

My mom died March 1. I gave the eulogy at her memorial.

When I was first asked to write this I found myself asking how do you write a eulogy for your mother? How do you say goodbye? The answer is you don’t. You say I’ll see you later.
Still I found myself at a loss as to where to begin so I decided to do what any good journalist would do and start with the facts.
My mom was born Deborah Elizabeth Stortz on (date of birth) in (place of birth) and Died as Jennifer Deborah Elizabeth Stortz Andres on March 1 at her home in Arizona.
My mom loved to go camping and fishing, traveling. Some of my fondest memories where of the trips my mom and my sister and I would take to Calico, camping in the mountains and skiing at Lake Isabella.
That skiing trip I still remember clearly. I must have been about 6 years old and my sister tricked me into wearing these heavy ski boots. They must have been made it to of lead. I mean seriously I mean seriously these boots were the kinds of that mafiosos made their enemies wear when they were about to dump them in the Hudson River.
I walked out into the snow and down I went. I literally could not get up the boots were so heavy. I lay there screaming and crying for what seemed like hours but when you are young everything seems larger than it is so it may have just been hours. I remember this story because it was my mom who came to rescue me from the snow. She took me back to the ski lodge and gave me a cup of warm cocoa, some slippers, and made sure I got warmed up. See that’s just who my mom was. She loved her family and most especially you and me Michelle (my sister). All we needed to do was just ask and she would be there for us.
My mom loved giving and gave us lots of love. She also gave us material items. She gave us our first color television. Do you remember that Michelle? I only think of that because it took her dying for me to realize the impact that she had on my life. If she had not given us that TV I would never have been introduced to TV news.
It’s funny how much our lives are interconnected. When she was a child she once met Walt Disney and because of her gift I now work for his company.
I am a firm believer in God and I know that my mom is in Heaven. And when it’s my turn to die I know that she will be waiting in front of the pearly white gates with a big smile and open arms. So I love you mom, but as I said earlier this is not goodbye this is I will see you later.

Autism in the Media: Asperger’s Syndrome, Adam Lanza and the (Dis)association with Violence

Part one of a series looking at the ways the media represents autistic people.
Continue reading

Meeting Myself for the First Time

Today I went to my first meetup for autistic people. It was both eye opening and interesting, I honestly had never spent much time with other autistic people. In fact I have never met any other autistic people in real life before. All of my friends and coworkers are neurotypical. So it was like meeting me for the first time. The last time I had ever spent any time with an autistic person was when I met Temple Grandin at an autism conference at UCLA 20 years-ago. Yes that Temple Grandin and yes 20 YEARS AGO.

The group was fairly diverse in ethnicity and age. As I looked around the room I saw myself being reflected back at me. That was not something I could ever experience with my neurotypical friends and coworkers. I sometimes felt that they did not understand me. That was probably because they are not like me at all and could not identify with me. Humans tend to socialize in groups with people that are like them. We call those similarities culture, religion and so on so forth. I guess there is some sort of autistic culture with its own body language and behaviors and the manner in which we perceive the world. I never noticed that until tonight. When I walked into the room I knew that I was in a room full of autistic people just like when I know when I am in a room full of neurotypical people. There was no criticism just acceptance and the freedom to be who we were without the need to conform to neurotypical norms. It was perfectly appropriate for one attendee to wear headphones to protect himself from noises. Some autistics are sensitive to noise. There was no pressure to act normal we could just be ourselves.

When I am with neurotypicals there is this pressure to conform to societal standards and to peer pressure which was the topic of discussion for tonight. When asked if anyone had an experience as to whether or not a neurotypical person had all pressured us into doing something we didn’t want to do, or try and take advantage of us or bully us, we all had a story to tell. It reminded that we all have had to struggle as a result of our autism. That commonality binds all autistics together in a way that I can’t with my neurotypical friends and coworkers. I think it is because no matter how well-meaning they are they don’t realize that they are part of the problem. They don’t understand us and we know and they don’t always know that we know it.

I believe that neurotypical people should take classes in how to behave like an autistic person and then act like one of us for a day and see what people say to them or how they are treated.

Either way being able to spend time with a group of people with whom I could identify with in manner. With this group it was perfectly acceptable to be socially awkard and miss social cues and not make eye contact with each other if we didn’t feel comfortable doing so. In fact, it seems we were expected to be that way, It was both freeing and fulfilling. It was a type of freedom that neurotypical people could not comprehend. I was free. I was just me.