J. Lorraine Martin cheeselesspizza.blogspot.com “Your son has pervasive developmental disorder, not otherwise specified.” That’s a mouthful to say, let alone hear. It was explained as a type of autism. That was 16 years ago. I did not have the Internet at home. There was no Google for further research. Dustin Hoffman had provided my only experience of autism in the movie, Rainman. Looking back, the declaration–the actual diagnosing words from a stranger, a neurologist, is fuzzy. What did those letters, PDD-NOS, mean? Could a socially constructed diagnosis tell me who my son would become? When I got home from that appointment, teary-eyed and uncertain, I looked at my son with his large brown eyes, head of blondish-brown ringlets, and cherub face. We had already begun to find our rhythm together. In our first year together, I intuitively discovered that if I laid him on the floor, and placed my head…
Author: Jen Myers
AIML Learning & Development @ Apple | Writer | Speaker | Autism Advocate.
Emily Willingham www.emilywillinghamphd.com www.forbes.com/sites/emilywillingham Let’s start with the headlines blaring the news about a recent autism study. They almost invariably use the phrase “grow out of autism,” even though the study itself does not use that phrase or even reference “grow” except to talk about head circumference. Instead, the authors of the report, published in The Journal of Child Psychology and Psychiatry, use the term “optimal outcomes” to describe what they detected in a group of 34 people who were diagnosed as autistic when they were under age 5. As the study authors themselves state, this idea that autistic people might show reduced deficits to the point of losing a diagnosis is not new. In fact, first author Deborah Fein and colleagues cite studies identifying frequencies of “optimal outcomes” as high as 37% among autistic people. The lingering open questions relate to whether or not the autistic people in these…
I love that the expectation is that he has an opinion, wants to learn, and we just haven’t figured out all the best ways to help him communicate. It is comforting to know that they meet him where he is, but demand much of him.
Jennifer Byde Myers jennyalice.com I get a note each afternoon from my son’s teacher. She emails me and let’s me know what Jack did that day, any struggles he had, and provides information about what’s happening in the classroom, and around the school. It’s efficient, an easy way for me to catch up on what he’s doing in school, and a great way for each side of the equation to have context for conversation with Jack. When we go out to dinner at Jack’s favorite restaurant, I write his teacher, then she and the aides can ask him questions about what he did the night before. It’s also great that the email goes to both my husband and me. So many times in the past I would read Jack’s little school journal, or talk to the teacher when I picked up Jack from school, and that information would never make…
Over the years many of us have struggled trying to figure out the perfect gift for our autistic friends or family, and while the quest may still be difficult, we’re hoping that some of the suggestions we have below, and in our Amazon store will give you a quick way to shop, or open your eyes to a new way to think about gifts. No matter who you’re buying for, one thing we can all remember is to truly keep the recipient of the gift in mind. Gifts should be given because they work, not because they are “age appropriate” or “gender appropriate.” A “practical” gift that may seem unfestive to you, may bring lightness of heart for someone who struggles to make ends meet. And always, consider what that person enjoys doing, not what someone thinks they should like. Give a Gift of Independence Description: bus, metro, or…
Shameful shamefuldocumentary.com Alex Plank and NoahTrevino are wrapping up editing on a documentary film entitled “Shameful”, which reveals the negative treatment and educational neglect of autistic youth in France, and the dramatic effect it has on those families. They traveled throughout France for over a month interviewing parents and meeting young autistic children in their homes, capturing the frustration, and angst of caretakers as they try to navigate a system that both blames the presence of autism on parents, and neglects to provide any educational structure for the children. I spoke with them several weeks ago. What led you to the Project? We heard about the issues in France through a conversation and thought that the topic would be a good fit for documentary. We had heard about “packing” [a controversial treatment where children are wrapped in wet sheets for hours at a time, which is often repeated over…
Kate When I was a fifteen years old, my psychiatrist told me that in ten years’ time, there would be a machine that would scan my brain and tell the doctors exactly what medicine to give me to make me normal, to make me whole. That was thirteen years ago, and though I have not yet heard of any such machine, I’ve realized that I never needed it. What I needed was acceptance. What I needed was love. These are the things that made me realize that I had, in fact, been whole all along. Sometimes, I feel as if my life were a long, cold winter, and that spring took a very long time coming. Like many autistic adults, I did not have an easy time of it growing up. Even in adulthood, I struggled with loneliness, employment, and a host of other issues. Though I was almost…
Brenda Rothman mamabegood.blogspot.com I had a lovely conversation with another mom of an autistic child, face to face, sipping coffee, while we talked about hot-button issues in the autism community. Without losing respect or good will for each other. Maybe it was the coffee. It was good coffee. We debated “cure:” why some parents want it and why autistic persons are offended by it. She said the desire for a cure would never disappear for some autism parents because their children are more severely challenged. She told me the story of a single mom with an adult autistic son, who was non-verbal, had restricted motor abilities, was self-injurious, and would never live independently. She related how difficult it is for the single mom to handle her grown child, how distraught she is about how she would care for her child as she aged, who would care for her child after…
Judy Endow, MSW judyendow.com Too much new for back to school is why I just don’t like it, though each new thing all by itself is entirely acceptable. New shiny shoes I do so love new ribbons in my hair a freshly pressed brand new pink dress Oh ……. ain’t I debonair! My satchel packed with all new things with all the stuff I need sits on the floor next to the door just waiting for me to leave! New class lists posted on the doors; the students find their names. They take their seats and wait to see what will this brand new teacher say! “Unpack supplies. Get settled in. My name is on the board.” On and on…
Jennifer Byde Myers jennyalice.com iEmergency+ application Create your own lock-screen with important information. I just got the paperwork from Jack’s school to set all of our records straight for the next school year. I know… already, summer is flying by. I scanned through the printed information I filled out from last year and got stopped at that emergency contact section again. It is a list that really defines the borders of my close-knit community. In an emergency, who can care for your child with special needs? Most of the time life goes along just swimmingly, but things happen; cars break down on the way to pick-up, I broke my leg once, we live in earthquake country. I have a collection of people that I know can take care of my child and keep him safe. It’s a short list, and I wouldn’t ask many on that list to even babysit…