Today is world autism awareness day. Today, throughout the world, individuals will come together highlighting the needs and dreams of people living with autism. Today, all of us at the Autism Society honor and respect each individual living with autism for whom they are. We celebrate and honor parents, siblings, grandparents, teachers, and other professionals who provide support and love to those living on the autism spectrum. We celebrate those who, years ago, did not accept what they were told they couldn’t do and today have shown what they are capable of. We celebrate those elected officials, business and religious leaders who value the beauty of a person with autism.
But today, we also must realize that autism, in growing numbers, exists each day of the year. We also must remember that while we aim to increase awareness of autism, the larger societal need extends way beyond awareness. Our nation still lacks a strong commitment to assuring that each person living with autism is provided an opportunity to realize a quality of life so many are still denied. Our nation must stop talking about autism and do more than talk. Today, most people living with autism are discriminated against in employment and access to a quality public education. Parents regularly must battle with their child’s school to ensure their child receives the required and legally mandated opportunities to succeed. We are all aware of the issues people with autism still face today. Let’s use today to focus the conversation on making meaningful change.
Today promotes the need for awareness and the Autism Society joins in that effort. But it is not enough. But the real question that must be asked is will we as a nation on each day of the year really commit to allow each person living with autism to advance on a successful path, free of unnecessary obstacles to maximize his or her quality of life. When that is the reality, we can then celebrate as a nation that we did something right. Autism impacts 1 in 88 individuals. It is time to allow each “one” on the autism spectrum a life of success and opportunity.
The Autism Society
Over this past weekend, ASI hosted its annual Central Indiana Autism Expo in Carmel, IN. The event brought in over 70 exhibitors who supplied guests with information and resources. Thousands of visitors trickled in throughout the day, including Fox 59 news, who aired a segment on the rising numbers in the autism community.
ASI’s own Development Ally, Beth Schweigel, was interviewed on the subject. Check out Beth, and get a glimpse of the expo if you missed go to:
Most likely, by now, you have heard about the changes in the Diagnostic and Statistical Manual (DSM), the book clinicians use to accurately diagnose a variety of disabilities and disorders. If you haven’t heard, the manual, as of May of this year, will no longer contain the individual Asperger’s diagnosis, but instead, all areas of the autism spectrum will be categorized as Autism Spectrum Disorder. The change is being made in order to help doctors more precisely diagnose and treat these types of disabilities.
However, it is understandable that many parents and individuals who have come to indentify their child/children or themselves as an “Aspie” or as someone with Pervasive Development Disorder are frightened. It’s as if they are loosing their identifier. This change is taking away something many people have come to depend on and even love and embrace.
What if you loved that you came from Italy, but not just Italy, you loved that you were Sicilian, a southerner. And then, after years of identifying with that label, you found out that in a few months your Sicilian title would be abolished and you would simply be an Italian, lumped in with the Northerners. (In Italy, the Northerners and Southerners are not fond of one another). This change would be life altering; it would make you feel as if you lost a sense of self. This is what those on the spectrum who have been diagnosed with Asperger’s may be feeling, and that is a scary thing to feel.
However, although these changes are coming and Asperger’s and other related disorders will now be called “ASD,” there is something to remember that will help you and your loved ones make the best of the situation: the diagnosis of having Asperger’s or PDD may have been the title your child/children identified with, but that title is exactly that, a title. Take it away, and they are the exact same person they always were. Changing what you call a diagnosis won’t change the behaviors of anyone; they will all still be who they have always been.
The transition may be a little difficult and it may take some time to get used to the new diagnosis, or the new title of what you have, but remember, that title never made you who you were before, and its change won’t make you who you are now.
For more information on the DSM and the changes being made please visit:
ARNIonline.org or call ASI: 800-609-8449
By: Hannah Tourney
Autism is a gift and a curse. As long as I can remember, I was the other. I was diagnosed with autism at age 2. It has always been clear to me that I wasn’t like normal people. I was “Special”. I was different, abnormal, and weird. Normal kids were my other. The sounds, scents, and sights that plague me never affected them. Everyday, I wander the halls of school, overwhelmed at the sounds of infinite chatter and the strange smells mixing with each other in the massive crowd. In the cafeteria, it gets worse. The chatter’s volume increases and the smells of different food, some enticing, some revolting, fill the room. They could easily socialize and follow the unwritten “rules” that confounded me. They had a seemingly endless knowledge on pop culture and people around the school. Conversing with the normal kids was like talking in a foreign language. Their otherness to me, was, common sense. I hoped and dreamed of just being the so-called normal.
Being normal was a near perfect existence in my mind. I dreamed about what life would be like if I was normal, but I knew it would never be. I would never be a normal, un-autistic kid at school or at all. It broke my heart. My whole life, I have worked so hard to an impossible dream. I have no choice. I have to act like the strange customs of normal kids make sense to me. It is my fate to hide my otherness, feel embarrassed or ashamed if ever it showed.
The special education room, where all the special ed. kids learn the unwritten social rules, always symbolized my otherness. None of the normal kids entered this room, but every abnormal was here sometime or another. I still remember the room. It never fades away, like all the other memories, in time. It stays, mocking me, yet welcoming me in with open arms.
In both Things Fall Apart and Avatar, two cultures see each other as the other. They fight, both sure of their supremacy. One falls, as history saunters forth. These battles against others have been throughout history and in the future. It is how things have and always will be sorted out between battles between others, with suppressing people and death.
The “Other” has a quality that makes them unacceptable. Mine is my disability. In Things Fall Apart it is skin color. In Avatar, it is their ignorance and resistance to Eywa and their species. The other’s “otherness” cannot be removed, taken away or cured. It is permanent and lifelong. My autism can’t be cured; it is part of me, whether I like it or not.
Being the Other is painful. It tears at soul and heart, and drenches you with loneliness. It’s depressing, and I would be lying if I said that I haven’t felt down over it. Everyday, I am reminded that I am not one of you. Nobody has to say it to me. It’s in the air. You can just feel it. Unacknowledged boundaries separate you from me. I look through the window, and hope one day somebody will break them down. It’s only happened once in 16 years, and probably never again.
Friendship has always been my most difficult challenge. What defines a friend? I can never tell if people consider me their friend or not. I never really know when I start being friends with someone, and it’s hard to know how to treat a relationship if you don’t know what kind it is. With the few friends I do have, it’s hard to keep in touch. I’m never comfortable with anything other than face-to-face one-on-one conversations. Talking in a group is a Herculean task. Everyone talks at the same time and I usually never know what the group is talking about. I’m pretty ignorant when it comes to most conversation topics. I don’t really watch a lot of T.V. or pay attention to gossip. One of the things I’m worst at is keeping in touch. I hate talking on the phone, going on Facebook, or writing e-mails or texts. I’ve lost a lot of friends because I forget to talk to them. The first day of school always symbolizes failure. I failed to keep in touch over the summer because I was busy doing nothing. I hate how I forget to talk to my friends over the summer. I hate how I always drift apart from people. I hate how being autistic makes me an other, and an anti-social other at that. I hate myself for being an other.
The first time I thought about suicide, I was in intermediate school. I was walking down the stairs from my bedroom after crying, and a thought popped in my head. I thought, “I should just go to the kitchen and overdose on my pills.” In that moment, I sat down. My mind split in to two separate consciousnesses. In one, I was planning out my suicide. In the other, I was reading my thoughts and felt terrified. I couldn’t believe I was actually thinking of killing myself. I sat there, frozen. I didn’t dare move a muscle, in case I decide to act on my urges. I must have sat there for hours. Eventually, my mom came and I confessed my feeling between sobs. I’d like to say that was the last time I had thoughts about ending my life, but I can’t. I haven’t been able to get enough guts to act on them, thank God. However, It lent me a perspective on Okonkwo. Okonkwo commits suicide in the end of the book, and I see why. When the villagers don’t kill the other messenger, Okonkwo had an epiphany. He saw that the villagers were now agreeing with the Other, the white men, and he was fighting a battle he could not win. Okonkwo realized that he was becoming the Other to his village, the tribesman who didn’t agree with the European ways. In despair, he chooses to take his own life instead of the Europeans killing him. In Avatar, Jake Sully becomes an other to both the humans and the Na’vi, but he gains back the Na’vi’s trust. In real life, the Other is the Other for life.
I’m the Other. I am not like you. But, you are the Other to me. It’s like that not only in Things Fall Apart and Avatar, but also in every Other story. Normalcy is only an illusion.
ASI serves families in Indiana. This is one of hundreds of examples. If you would like to help ASI you can donate money or your time. Click the donate button below or the Get Involved button below to learn more about how your help can make a difference for families right here in Indiana.
First let me introduce myself. My name is Madeline Szrom, most call me Maddie. I’m the Communications Ally at the Autism Society of Indiana. I had heard of Dr. Temple Grandin before attending the Indiana Autism and Asperger’s Syndrome Conference. I had heard of her life and her accomplishments despite her autism diagnosis. I knew that she was someone of great strength and ambition, but I didn’t know how much so and I didn’t understand to what extent until I heard her speak.
Dr. Grandin approached the podium, not as I had anticipated, with trepidation, but in a cool stride. She didn’t look fearful or nervous, but excited and full of enough energy to make 10 speeches. Her voice was quick and twangy and as soon as she spoke every other noise in the room was gone. She jumped right into the importance of early intervention for children with autism, stating, “You always have to stretch kids on the spectrum, if you don’t stretch them, they don’t’ succeed.” She was adamant about that. Temple, as she prefers to be called, went on to discuss sensory issues, hands on teaching, development and employment, one topic after the other with hardly so much as a sip of water in between. She had a mission to educate and enlighten her audience and she went after that goal in full force.
She was funny and original, making jokes when the computer/projector wasn’t working properly and wore a southern styled outfit complete with black and red rose button down and bolo tie. She pushed forward, speaking for an hour and at the end thanked the crowd and graciously walked off the stage. Applause erupted and the crowd hovered in their seats, momentarily stunned. I sat in awe of what I had just seen. Whatever predisposed ideas I had had about autism were shattered. This woman is amazing, astonishing, astounding! She is living proof to anyone, disabled or not, that anything is possible. It sounds cliché, I know, but I have never felt that phrase to be truer than that moment.
In addition to hearing Dr. Grandin speak, her mother, Eustacia Cutler, also talked about what it was like raising a child with autism in a time when little was known or understood. Mrs. Cutler walked with intense elegance, and she spoke with even more. It was the type of voice that was so lovely, she could have told me my car was on fire and I would’ve responded, “That’s beautiful.” Her story, however, was not beautiful, but sad. She struggled through raising a daughter with autism, battling for her kids and well being with a husband who wanted to take away everything and through it all, she grew and learned, becoming one of the biggest activists for autism.
I felt a little out of place when I first stepped into the conference. I don’t have any children, so I don’t know the feeling to be a parent with a child/children on the spectrum and I don’t have an immediate family member diagnosed, but when I left I felt more connected to the cause of autism awareness than ever. This is not an exclusive club, it’s not something only people directly affected can understand, it’s something we all can relate to in some way and should fight for. I learned that through hearing Dr. Grandin and her mother speak. My spirit was lifted with each word they said. I was proud to be working for an organization that supports people affected by autism before, but after this conference I am beyond excited to be part of a team that highlights how amazing, interesting and creative people on the spectrum are. We are all different, and that’s what makes us great; Dr. Grandin helped remind me of that, and I don’t think I’ll forget it again.
Valentine’s Day is rapidly approaching and whether you are planning an elaborate dinner, complete with roses, chocolates and a punch to your wallet, or just hoping to have some time to relax, there’s more than a good chance wine will be involved.
This year, instead of moping around the sure-to-be-packed liquor stores, why not pre-order some of ASI’s “green label” wines? With a variety of choices, from dark reds, like Merlot, to dry whites, like Chardonnay, ASI has you covered for whatever your taste. Most importantly, you’ll know a portion of each bottle or case goes directly to help Hoosier families affected by autism.
Valentine’s is a day full of romance and love, so instead of using your money to buy an oversized stuffed bear that will likely end up a dog toy, really share the love and help support those affected by autism.
Since you’ll be raising a glass anyway, why not drink to a good cause? Or should we say, “wine” not?
ASI wine on sale at www.inautism.org!! Go to the drop down menu where it says Shop ASI.
or Kevin – without you. You saved Kevin.”
This is just one example of how the Autism Society of Indiana’s Allies have impacted the lives of thousands of Hoosiers over the past two years. In fact, the Allies have received and answered over 2,600 calls to our toll-free number in 2012 alone!
It is likely that you are personally affected by autism, or you might know someone who is. At a rate of one in 88 (over 80,000 people in Indiana) children diagnosed with autism, we have a lot of work ahead of us!
100% of the funds we raise stay in Indiana.
- Give at the $100 level, and know you are supporting one family. Donate here.
- Give at the $500 level, and know you are supporting training for parents. Donate here.
- Give at the $1,000 level, and know you are helping to raise awareness about autism, which in turns reduces the stigma of this diagnosis. Donate here.
This is an incredibly controversial topic, and I thought the information below, published by the Autism Society of America did a good job of explaining what to expect when the new edition of the DSM is released in 2013.
As always…I’d love to hear your comments!
December 3, 2012, Autism Society of America
The American Psychiatric Association (APA) on Saturday approved a fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), signing off on a sweeping change to the definition of autism.
The DSM-5 eliminates autistic disorder, Asperger’s disorder, childhood disintegrative disorder and pervasive developmental disorder (not otherwise specified) by dissolving them into one diagnosis called autism spectrum disorder. According to the APA, this represents an effort to more accurately diagnose all individuals showing the signs of autism.
The DSM-5 is important because it provides the diagnostic labels that governments, insurance companies, schools and other institutions use to determine the services needed by each individual. The Autism Society, the nation’s largest grassroots autism organization, strongly advocates that individuals with autism spectrum disorder should continue to access their existing services or maintain their waiting list positions if a diagnosis changes under the DSM-5.
The Autism Society has been very involved throughout this process. We have submitted written comments to the APA advising that changes must not affect the services individuals receive. We have been invited to discuss these upcoming changes with the APA and will continue to represent the rights of individuals with autism–advocating for the protection of services. The Autism Society hosted a keynote session on the DSM-5 at its national conference last July, during which APA working group member Dr. Bryan King explained the need to make autism diagnosis more reliable and valid from person to person and place to place.
Here are a few important points the Autism Society believes all individuals affected by autism should know:
- The specific diagnoses that are considered Pervasive Developmental Disorders are all quite complex. According to many clinicians, diagnosis of co-morbid conditions occurs too frequently because the definition of autism in the DSM-5 is too long and too complicated.
- The APA reports that it did not find significant data to differentiate a diagnosis of Asperger’s Syndrome, PDD-NOS and “high functioning” autism.
- Broad criteria has made it more difficult to grasp an already complex disorder that manifests itself differently person to person.
- A lack of clinical clarity can also lead to particular populations (females, minorities, and those from low income families) from being properly evaluated, resulting in misdiagnosis and improper treatment.
In the beginning of DSM-5 considerations, APA’s Neurodevelopmental Workgroup met with advocacy groups including the Autism Society, the Autistic Self Advocacy Network and others to solicit feedback and learn about the specific issues important to people living with autism. As part of the revision process, field trials were conducted over 11 sites and involved 2,000 patients to determine the extent to which separate clinicians from separate sites would make the same diagnosis (indicating reliable assessment). Of the 11 sites, 7 were adults (1 geriatric) and four were pediatric. According to information received from the APA, field tests were conducted by trained clinicians using test-retest methods on real patients.