This was reposted with permission from Stuart Duncan.
I wrote this in May of 2012 but I thought I would repost it.
My friend Noelle posted this on her Facebook and it got me thinking. What if we treated other illnesses like they were mental illnesses? It got me thinking that some people still treat Autism as if it was a mental illness. As if somehow having Autism made us crazy or mentally unstable or at the very least deserving to be treated as if we were less than human. Then I got to thinking, I write this blog so that one day I won’t have to write it. I write it so that one day Autistic will be completely synonymous with human in the neurotypical worldview and not equated in some cases with mental illness.
The day we are treated as equals and as fellow human beings is the day that we autistics will be quiet. It’s the day we won’t blog. Its the day that the world won’t need us to say anything because we will be understood. I believe that autistics and other differently-abled people are given the responsibility to educate humanity on it’s shortcomings and cry out at injustice.
As Dr Martin Luther King, Jr. said, “Injustice anywhere is injustice everywhere.” Our words are both a sword and a shield against the intolerance and injustice of humanity. We are in a pitched battle to save the very soil of humanity from the depths of it’s own depravity and from the legions of those who are against and are led down the path of ignorance. We as autistics who are capable of putting pen to paper or putting words in mouths have a moral obligation to do so. Especially for those of us who can’t speak or write. Our words are the swords that educate the world and they are the shield that shall protect us from the spread of ignorance. There shall be nothing written or said about us without us writing it or saying it.
I just came across this article. Abusing the disabled is not okay. http://www.nbcnews.com/news/investigations/mom-please-help-fbi-probing-alleged-abuse-deaf-autistic-kids-n193846
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 come from 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 autistic self-advocates 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.
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.
- neurotypical ≠ neurofunctional (mymorninglatte.wordpress.com)
- the game… (mymorninglatte.wordpress.com)
- Fitting In vs. Being Yourself (eoghann.com)
- Some Advice for the Young Non Neurotypical Woman (chariotofreaction.blogspot.com)
- Between Hope and a Hard Place to “I wish I didn’t have Aspergers” #AutismPositivity 2012 (betweenhopeandahardplace.wordpress.com)
- thewanderingmonster to “I Wish I Didn’t Have Aspergers” #AutismPositivity2012 (thewanderingmonster.wordpress.com)
- N is for Nearlytypical (spectrummymummy.com)
- The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to Be a Better Husband (chutneybynancy.org)
- What Does Autism Look Like? (kenneyediting.wordpress.com)
I just came across this great blog post on Aspie Streams blog.
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
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
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.
I am constantly aware of autism. I am autistic. It is a part of me but it is not all of me. I am cognizant of how different I am from the time I get up in the morning to the time that I go to bed. I know I am weird and I like it. I am not ashamed of who or what I am. In fact I am proud of what I have accomplished in this life. Autism Awareness month is of great importance to me not because of all the Autism walks but for the fact that many of us become more vocal and share more of ourselves and are noticed more.
If we don’t share what it’s like to be human for each of us, how are we to know, understand and accept each other, as well as ourselves? So much of what makes us human is our desire to connect with other people. Autistics are no different in that sense. We all want to connect with others. To varying degrees we try connect with each other. If we cannot speak we find other ways to communicate whether it is through sign language or music or art. All things we do communicate or express an idea or an emotion. We just have to listen to understand what is being conveyed. In it’s most basic form autism is a disorder that alters the way that we communicate. Some of us like Carly Fleischman use writing. Fleischman writes the blog Carlys Voice and was featured on 20/20 several years ago. Others communicate through body language and facial expression. All humans communicate and I am human.
I know that I am weird. I don’t always say hello when I should. I often will get so focused on what I am doing that that I may forget there is anyone else in the room. Yet, I take great pains to remember the little things in life because details matter. And those details often include things that most people don’t realize like making eye contact. For the longest time I did not make contact. It took several years for me to learn how important it was to do it. If I didn’t make eye contact with people they thought I was insecure. I was neither. Eye contact and handshakes are things that most people take for granted but for a person with Asperger’s just being able to make eye contact it is a pretty big deal. Through years of training and mimicking the actions of reporters from both KABC the Los Angeles affiliate and from ABC News I learned to mimic the proper motion of a handshake.
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. dare to be your friends are special because they are brave. They are brave enough to be different. They are brave enough to accept our differences despite what people will say. People with Asperger’s have to adjust to a world that refuses to adjust to us. It is how we deal with this selfish injustice that defines who we are. I would rather have Asperger’s than not have it.
It has not been an easy to deal with being autistic, but I never let it stop me even when was told I would never amount to much. I guess I proved the nay-sayers wrong.
I never let being diagnosed with keratoconus a degenerative eye disease in both eyes when I was 15 stop me either. I never learned to drive as a result and rode the bus most places, which is no small feat in Southern California. It made things more difficult especially when I was attending school and reporting for the campus TV station because I would have to carry my camera, and other associated equipment such as tripods and occasionally boom mics with me on the bus. Often the trip would involve changing buses two or three times each way and would take up to 2 or 3 hours each way per trip.
Despite all of the things that I have accomplished I still know that I am weird. One of my biggest eccentricities is that I am always wearing a hat except for when I am at church or when I go to sleep at night. It is my uniform. Like Temple Grandin who always wears western wear like a cowgirl, I always wear a hat. It gives me a sense of comfort and stability to wear it.
I know that I am weird because I stim. Stim is short for self-stimulation. Many autistics I know do it. It is pretty much how we deal with emotions. Most people including those that are not autistic stim in some form or another. When people are nervous or anxious some people tap their pencil and sometimes women play with their hair. What we do is not much different except we do it differently. When I am excited I rub my eyes. When I am nervous I rub my hair. The sensation we feel temporarily distracts us from the emotions we are feeling. Autistics often feel those emotions in a manner that is much stronger than a person who does not have autism. That is because we lack the ability, or in many cases it is just severely impaired, to censor ourselves. This often has an impact on our relationships. So much of our interaction depends on the little white lies we tell each other so that we won’t hurt each other’s feelings. Normally it is done as an act of sympathy, but to some autistics it is just logical to tell the truth. That does not mean that autistics are incapable of feeling sympathy or empathy.. We do. We are not robots. We feel as much if not more than other people. Some of us even understand sarcasm.
That being said, I am still weird. Autistic humor often takes some thought and might not make sense to most people. Autistics do have humor. Even Data, the android character from Star Trek: The Next Generation told a few jokes. Like Data I often don’t understand why they are funny. I just know that they are funny.
I am weird because no two autistics are alike. I am human. Humans were not built in factories to exact specifications so that we are all carbon copies of each other. Honestly that would boring if we all looked alike. Many of us are non-verbal. Some of us are. I can’t do math like Jerry Newport, the basis of the movie of Mozart and the Whale, or Vernon L. Smith who won the Nobel Prize for Economics in 2002. I cannot write music like Travis Meeks, the lead singer and songwriter for the Band Days of the New. I can only write. I wrote my first short story when I was 9-years-old. In fact, it was my writing skills that led to my career in journalism.
I am weird because I look at the world through a different lens than most people. I am weird because I often say the wrong things and always dress the same way and do almost everything in the same way. I am weird because I like routines. They give me a sense of order and structure. I am weird because I am different. I am weird and that is fine with me.