The Stories We Shared

On March 24, the editors issued this invitation: TPGA would like to share an autism perspective: yours. As members of the autism community, we know that awareness is only a first step. Increased awareness brings opportunities to share our experiences and strive for what people with autism deserve: understanding, and acceptance. …Please send us a short essay on one thing you want readers to know about autism — as it relates to you. Share what you’ve experienced or witnessed. Tell readers about a formative experience; something joyful, or a brief moment of despair. Share your hopes, dreams, past, or future. Anecdotes laced with humor — however dark though not mean-spirited — are especially appreciated. We published 22 stories, vignettes, and interviews. Six personal stories from people with autism Corina Lynn Becker, Why I Am Wearing Black For this young adult with autism, April “is month of reflection, of remembrance. It…

My Fights With Autism and The Need for More Awareness

Kristen Kristen is eighteen years old and currently in her third year of high school. A statement I have always found confounding is, “I wouldn’t wish it on anyone.” Let me explain: I find this confusing because what if “it” could be beneficial or insightful for the whole of society? What if perspectives widen because of “it”? Who am I? I am an unknown Aspergian. I was diagnosed at the age of three, but with no follow up afterward. My childhood consisted largely of unwanted (probably neurologist) doctor visits where doctors would run test after test, and force me to look them in the eyes. I grew up with a degrading “you’re not normal” mentality. Needless to say, my childhood, like me, wasn’t “normal.” The doctors finally concluded that I had ADD and gave me Ritalin, which was useless. If that wasn’t cruel enough, in second grade I finally realized…

Patience, Awareness, and Justice

Sarah MacLeod quarksandquirks.wordpress.com findingmygrounduu.wordpress.com During announcements, my heart dropped. The service leader announced, “Remember that at noon, we have our congregational meeting about the accessibility improvements to the church.” To be clear, I completely support the church’s improvements plan and the capital campaign required to bring them about.  Armed with my knitting, I knew I’d get through the potentially too-long meeting to put these issues up for congregational vote.  While the meeting may be tedious, it’s truly democracy in action, and the improvements are necessary. Our church is built on four different levels, connected only by stairs.  We’re without an elevator (action item number one on the list), accessible bathrooms (item number two), and many other amenities that would make our facility the accessible building it should be.  It’s an old building (the meeting-house is 160 years old) with numerous additions made over many years, resulting in a markedly unwelcome building for those…

The “A” Word

Kim Dull www.modernparentonline.com (Coming Soon!) I’m a mom to three kids. I have a daughter, who’s almost seven. (I was going to refer to her here as Princess BossyMcBossypants since she thinks she’s in charge of the household, but that seemed a little excessive. So we’ll go with Princess.) I have a son, who’s five and a half (heretofore referred to as Monkey Man). And I have another son, who’s almost four (let’s call him Bubs). Princess is what you’d call “neurotypical,” or “typically developing.” In other words, she’s a normal stubborn, bossy, temperamental, yet ultimately very sweet and caring little girl. Bubs has some slight developmental delays. He receives therapy for speech, fine motor, and social concerns. But we’ve been very lucky that he’s pretty much caught up with his peers thanks to early intervention and the services provided by our local school system. But this story is about…

An Interview with Carol Greenburg, Autism Women’s Network Regional Director

I met Carol Greenburg last summer at the BlogHer conference in New York. Her confidence, humor, and commentary made her instantly appealing, but her kindness, fierce intelligence, and advocacy skills make knowing her both a luxury and a necessity. She is the executive director of Brooklyn Special Needs Consulting, and serves as the East Coast Regional Director of the Autism Women’s Network. She joined the Thinking Person’s Guide to Autism’s editorial board in January, where she adds her depth of knowledge as an advocate, parent of a special needs child, and an adult on the spectrum. ~Jennifer I’ve joked with you before that you really “have it all.” You’re an adult with Asperger’s syndrome, the mother of an autistic child, and an advocate in the autism community. Do you have trouble switching hats? Do you compartmentalize?  I try to compartmentalize. I think that’s the only way to really do it.…

Headlines: Abuse and Empathy

Zoe illusionofcompetence.blogspot.com WARNING: this post discusses child abuse We are two weeks into Autism Awareness Month and I count three casualties so far. Two stories in the news this week, of three autistic children murdered or abused by their parents and caretakers. In Washington, two autistic boys (ages 5 and 7) were discovered locked in a cage, where their father and his fiancee kept them every day, in unsanitary conditions. They weren’t allowed to walk around the house or to go to school. I don’t know their names. Their father, John Eckhart, told police, “What am I supposed to do? Let them run around the house? They’re autistic.” In Massachusetts, Kristin LaBrie was found guilty of “attempted murder, assault and battery on a disabled person and a child, and child endangerment,” after she withheld chemotherapy drugs from her 9-year-old autistic son, Jeremy Fraser. This actually happened years ago, but was…

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Randomness

Rivka Iacullo netiimvzaviyos.livejournal.com My son CJ is now five years old, coming up on six. He’s a bright boy who loves reading (though he doesn’t like demonstrating his skill on command), tow trucks, playing outside, and the color orange. He spends hours on the weekends enacting strange and elaborate imaginative scenarios with his younger sister Claire, who functions as his trusty sidekick. (One of their favorite games is “Princess and Customer,” something I could not make up myself if I tried.) CJ was diagnosed with autistic disorder at the age of three. He is sufficiently high-functioning that it took me a while to wrap my mind around the possibility of autism. This is, I believe, at least partially because of the incompleteness of the short autism awareness blurbs that show up in parenting magazines, pamphlets in the doctor’s office, and the like. They recommend action when children don’t talk, never…

Why I’m Wearing Black

Corina Lynn Becker nostereotypeshere.blogspot.com April is an emotionally charged month for me, April 1st especially. Up to grade six, it was because I dreaded April Fool’s Day, a day dedicated to pulling pranks I did not enjoy. However, in grade seven, I was given more reason to not like the day. On his 77th birthday, my Grandpa had a massive stroke. The damage was severe enough that any operation would just leave him in a vegetative state. It was decided that Grandpa, a man dedicated to his work as a minister, would not be happy in such a state. So we just sat there for three days, waiting for him to die. On April 1st, at 8:30 AM, Grandpa passed away. It was the first time I experienced the loss of close relative. To me, it was losing a huge chunk of my foundational support. I had always assumed he…

My Fight

Spectrummy Mummy SpectrummyMummy.wordpress.com Pudding hates DIY stores. The ceilings are too high, the lights too bright, the smells too noxious, the noises too loud, the people too many; we just can’t go there with her. It is unbearable, and nothing makes it better.  So we just avoid going, easy as that. So most often Spectrummy Daddy goes alone, but this time he was ill, and though my Mondays are crammed, there was no putting it off.  Pudding was in school for the morning, so I took Cubby right after his music class.  He is more sensitive than she is, so I wasn’t sure how he’d do, but apart from a lot of questions about the various noises, he did okay.  Phew. I only had a brief amount of time before I had to collect Pudding to take her to speech therapy, so I found a sales associate to ask where…

Mother of A Child With Autism

Amy Spurway I am many things. I’ve got lots of labels. Mother. Writer. Wife. Gen Xer. Self-obsessed panic-prone neurotic with duck feet. But today, the one that is bouncing around my brain like a four-year old with a face full of neon blue icing from a Little Mermaid birthday cake is “Mother of a Child With Autism.” Maybe it’s because April is Autism Awareness month. Of which I am all too aware, thank you very much. Or maybe it’s because I spent the better part of last evening at a mom-blogger workshop talking to another woman with an autistic kid. Or maybe it’s because I spent 20 minutes this morning standing in the school hallway with my daughter Roo’s kindergarten teacher and Special Needs Assistant, discussing her refusal to follow instructions, and her “violent outburst.” Or maybe it’s because it’s just my reality, my most significant label. I am the…