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.

2012 in review

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

600 people reached the top of Mt. Everest in 2012. This blog got about 1,900 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 3 years to get that many views.

Click here to see the complete report.

Understood

Too often people confuse personality with disability. I’m a person. I am not a disability. Autism is as much a part of me as my love of writing. I can do things much like everyone else. It’s sad that I have to say those things to people. It’s not enough to be aware of Autism. You must understand it. You must understand it affects all of those who are autistic differently. To be understood is something that every person on the planet wants. I want to be understood.  I for one enjoy being around other people.  Other autistics prefer to work in solitude. We are all different as the colors of the rainbow. We are not like Xeroxes where we all look alike or think alike. Humans are all different. And human is what we are.

 

I am me.

Being honest and telling people that you are autistic is a lot like coming out of the closet. Its not an easy thing to do. People don’t always know what to make of it. It’s funny how when you do tell people some of them who you thought you were there friends shun you out of ignorance. Then there are the people who treat you as if you have a disease and claim they want to cure you. They don’t accept you for who you are. 
I have to choose how and when and if I tell a person that I am autistic merely out of self-preservation than by a desire to be understood. The truth is telling people is never easy and I never know how they’re going to react. Sometimes I get the oh my friend/child/neighbor has it response. When that happens I feel a lot more comfortable. Even those people may not understand Autism. I don’t expect them to understand it. I expect them to understand me. We are all different. I am not like your friend/son/neighbor who is autistic. I am me.

Thoughts

One of the things I love about TV news is the team aspect to it. I love the ability that it gives me to interact and work with people.  We are all human beings and on some level we all want to be a part of a group. Even autistics gather together in a group that we call the Autism Community. It doesn’t mean we don’t have our disagreements, but that is part of being human and of working and socializing with others… humans are not designed to work alone.  Why would anyone assume that because I am autistic I want to work alone? I am a human being. We all want to be social in some way.  Autism is just a part of me but it is not all of me.

We Must Rise Above

As a disability rights advocate I have come to a simple conclusion…we must rise above. What I mean by that is simple…we must rise above the rudeness. We must rise above the personal attacks. We must rise above the mudslinging. Our job is not to act in the scurrilous and often disreputable manner that many people behave like towards us. We must always be better people. The lens of society is always scrutinizing our behavior just looking for any reason to disqualify us from the assumption that we are all capable human beings and we must use that to our advantage.
We must lead by the example we we set. We cannot let those who do not understand or those who do not know or those who fear us get to us with the often mean and degrading things people will say. Our job is to be better and to inform people about our particular conditions in a manner that is polite and we civil. We must rise above the muck and live our lives with both class and dignity. How can we ask for respect if some of is cannot show it? We must rise above the need to bully and treat with scorn people in our own community those who are more severely affected than us. Are they not our brethren? Do they not want the things that we want in life?
We must rise above the ignorance that we face day in and day out and not return people’s ignorant s scornful remarks with equally scornful remarks. We must return fear and hate and ignorance with compassion, love and knowledge. Knowledge is our ally. Knowledge and the ability to spread it is how we can spread our wings and fly.  If we don’t do that all the time we will crash and burn and all our work will be for nothing. We must rise above.

A Failure to Communicate Part 3: Autism and Intelligence

When I first read Emily Titon’s satirical post “A Person With Autism Manages To Do Something” I was drawn back to a post I wrote a while ago about Autism and relationships. While Emily’s post is satirical it is effective at pointing the general attitudes people have towards Joe Autie and the wonderful thing he did the one what I noticed the most was the surprise that Emily Expert had at Joe Auties ability to do something wonderful. I imagine if Joe Autie had been quoted in this satirical article his response to all the amazement would have been “Well duh! I have known I can do that my whole life.”
This got me thinking about how we perceive intelligence. So I posted a question on my Facebook to get an answer:

“I have often wondered why people associate interaction skills with any other skills or with intelligence? Autistics struggle with their interaction skills but that does not mean we are incapable of doing anything else. To assume otherwise is incorrect. We can be team players or a part of a group. We don’t interact because we don’t want to we don’t do it often because we struggle with it. Often people only have perceptions of what they see and hear to make assessments of what others are capable of based upon those factors. I was hoping a person who doesn’t have Autism could respond to this.”

Three of my friends answered. The first to answer was Matthew Gilbert. Gilbert is an adjunct professor of business at National University. Strayer University, and UCLA extension. His son is autistic.

“I think because it is hard to grasp someone’s intelligence until he/she communicates or applies it — otherwise it is really impossible to understand. Like the difference between potential energy vs. kinetic energy perhaps? My son, who is on the spectrum, is very intelligent but until he could talk (after lots of ABA) it was really hard to “see” that. Now, he is very sociable and uses wordplay to engage people as well as his love of bad jokes and math.”

I responded simply:  Seeing is believing then?

Gilbert responded:

“Then again, think about celebrated artists from hundreds of years ago who we can’t interact with (or there are no audio or video recordings of them). We make assumptions about their intelligence and abilities by their art, which I suppose is still communication (literally, as you wrote, seeing).”

What Gilbert said had a hollow ring of truth to it. Intelligence is not just a number or a score. It can’t be measured accurately in an exam. People cannot be quantified by numbers. Society in general makes assumptions about a person’s intelligence all the time. As Gilbert said what about those long dead composers where our only way to assess their intelligence is to listen to their music? Too much emphasis is placed on how a person sounds or the phrasing that they use. Their is a distinct difference between a person’s written and spoken vocabulary. As Louis Pugliese a lecturer in Educational Psychology at California, State University told VideoJug.com, “There are many ways to be smart and there are multiple intelligences.”

See link for Pugliese’s complete interview.  http://www.videojug.com/interview/types-of-intelligence-2

Still the idea of the societal value we place on good communication skills is problematic to me even though there are several types of intelligences and not just one general intelligence. As Pugliese points out Verbal-Linguistic Intelligence is only one type of intelligence.

Autistics are often discriminated against because of the confusion that exists in society as to the difference between Verbal-Linguistic Intelligence and general intelligence.

Cecily Arambula who was the second person to answer my question on Facebook had this to say about the difference between communication skills and intelligence.

“I think society tells us that anyone diagnosed with something is different from those NOT diagnosed with something. If you can’t interact with me, you must not be able to do anything correctly. Societal ignorance.”

Arambula is right. I have noticed that many people who are diagnosed with disorders that affect their speech communication skills such as stuttering are often ostracized for being stupid or incapable. Some autistics are nonverbal in other words they cannot talk. Because of this they are assumed to be retarded. Yet put a typewriter in front ot that person they can write very effectively. Written commiunication is one part of Verbal-Linguistic Intelligence. Carly Fleischmann is perhaps one of the most well known autistics that cannot speak but can write.

The type of discrimination that Fleischmann and other autistics such as myself have faced is something that is of great concern to Pia Prenevost whose son is autistic told me via Facebook that this type of discrimination is the greatest fear she has for her son.

“He struggles with communication (he also has apraxia of speech) and is far behind in his language skills. However, I know… and can see concrete evidence… that he is wicked smart. His problem solving skills are off the chart, and he demonstrates great ability to learn… even with the significant challenges he faces in communicating and socializing. I am so very afraid that he will be judged as being not able to learn because of his obvious difference instead of his actual ability.

He is 5 and is going to kindergarten this fall and I just don’t even know how to handle the school people, to be honest. They look at the ‘label’ and make assumptions and not really get to know his abilities and unique learning style…. Anyway, I guess I will work it out but I can say in no uncertain terms I dread it.”

Prenevost has a right to be concerned.  He will be judged. It’s what people do. We just have to teach our children to ignore the naysayers and keep living their lives and to do what they love to do. By doing that he can be happy and educate the ignorant.

The Advocate – Love and loneliness

The column for which I won second place for best personal experience story from the Columbia Scholastic Press Association in 2007.  A fact I am proud of.  The Advocate was the first weekly column in a campus newspaper, The Daily Titan, describing life with Asperger’s Syndrome.

Love is perhaps the most commonly discussed, pondered and philosophized subject in the world. For those involved with
the treatment of Asperger’s, as well as those who have it, love is still a topic for discussion and thought.
The city on a hill is the perfect metaphor to describe the Daily Titan newsroom. With its location on the sixth floor of College
Park, it is like that city ona hill where students, through hard work, can enjoy the fruits of their labor and all the academic and personal
successes. Yet it can definitely be lonely at the top. Success, in my estimation, is meaningless when there’s no one to appreciate it.
With Valentine’s Day coming up, love is on the minds of everyone.With Asperger’s, the discussion is less philosophical in nature. The conversation is more about “can we love?” as opposed to the very nature of love itself.

The question is irrelevant.

Can you breathe?

We are capable of love like any other human being. The ability to love by both Aspie, (adiminutive name for someone with Asperger’s) and non-autistic alike is what makes us human. Aspies such as myself choose to express love in a way that does not fit the ordinary definitions of love. Even those who are not autistic differ in the ways they express love and show affection, but it does not make the feelings less real or less wonderful and beautiful. Love created the universe, which is reflected in the eyes of those we love. Being a male student on a campus that is 64 percent female does have its advantages – to which the remaining 36 percent can attest – but on the other hand it has its disadvantages.

Let’s face it, most autistics are men and most men never really understand women, least of all autistics. I choose to express myself through words and actions, and I have found saying “I love you” is much more powerful than giving out candied hearts on Valentine’s. Words are more powerful than any gesture. Yet love is something that anyone wants and deserves. People assume that whenever a disabled person mentions the things they deserve, they often mistakenly assume that we deserve those things because we are disabled.

In contrast, it is not because we are disabled but because we are human.
As I spend my time in this city on a hill, the world seems that much bigger and just that much more isolated. Perhaps being such an extreme man has had a part in that. But that discussion will have to wait.