‘Autistic’ or ‘Person With Autism’?

Jean Winegardner www.stimeyland.com When I write my column Autism Unexpected for Washington Times Communities, I use the words “person with autism” and “autistic person” pretty interchangeably. Every once in a while, I get a comment telling me I should use “person first” language, meaning I shouldn’t use the word “autistic” to describe a person. Because I’ve heard this criticism more than once, I feel it necessary to tell you that I not only use the word “autistic” intentionally, but thoughtfully and with purpose. The theory behind person-first language (“person with autism”) is that it recognizes the person before the disability and stresses that there is more to a person than just autism. I asked my blog readers and my Twitter followers which they preferred, and the majority, mostly parents of children with autism, reported that they prefer the person-first terminology. Person-first language is an easy philosophy to accept. It makes…

A Single Mom’s View of Autism Divorce Rates

Estée Klar www.esteeklar.com I have always found the idea of blaming the autistic child for the deterioration of marriage unfair to autistic people. Yet, when my own marriage ended, I couldn’t help but wonder if any of those ideas behind the eighty per-cent divorce rates and autism might in some way be true. A single mom of an autistic child for several years now, I’ve seen that when relationships fall apart, we begin by looking outside ourselves for the external causes to blame. No matter what the circumstance, illness, disability, death are the certainties of a full life. We make vows for better or for worse, even if most of us want the “better.” Frequent divorce seems to reflect the advent of the re-start button — an impatient, quickly gratified culture with many options at our fingertips, and a waning attention span. It’s perhaps an unforgiving view about what as…

Getting to Know Your New Neighborhood: Reaching Out and Building a Network

Susan Walton www.discoveringfamilyfun.com It’s important to realize that you cannot cope with this new element of your life alone. And you shouldn’t try. There is help out there for you, for your child, and for your family, and you should take advantage of it. In addition to uncovering the services and agencies that offer assistance, you want to find and keep the friends and professionals who will sustain you. And conversely, you may need to minimize your exposure to the people, feelings, and obstacles that drag you down. First and foremost, your best allies are other parents who have a child on the spectrum. You can find existing parent networks through local support groups, parent clubs, assistance agencies, and online forums like Yahoo Groups. Joining those groups is a great way to get started. To find out if there is a Yahoo Group for parents of children with autism in…

The Crucial String

Liane Kupferberg Carter http://www.huffingtonpost.com/liane-kupferberg-carter My husband and I had grown increasingly uneasy about our second child Mickey. Though a warm, engaging baby,  he showed no interest in playing Peekaboo, How Big is the Baby, or waving bye-bye.  At monthly visits the pediatrician assured us all was well. But by 18 months, Mickey had only three words, which is why fourteen years ago we finally found ourselves sitting in a cubicle at a major teaching hospital. A team of unsmiling experts spent two hours poking, prodding, and measuring our son, asking him to draw a straight line, stack cubes, put pegs in boards. I perched forward to catch the doctor’s words more fully, hoping to hear how adorable, how promising my child was. Instead, she said: “Don’t expect higher education for your son.” It felt as if we were looking down an endless, dark tunnel. Our radiant little boy had just…

Does Your Child With Autism Have a Daily Record?

Shannon Des Roches Rosa www.squidalicious.com www.canisitwithyou.org www.blogher.com/blog/shannon-des-roches-rosa There are so many factors that can influence or illustrate how our children with autism are wearing their own skin, including but not limited to: health, toileting, aggressive and/or self-injurious behaviors, sleep patterns, medications, language usage, diet, and school performance. We’ve used a Google spreadsheet to successfully track important factors for my son Leo for the past several years. A daily record of Leo’s important variables helps track and explain underlying patterns if and when things go awry — or go well. Because we keep Leo’s record online as a Google docs spreadsheet, it can be shared with his entire school and home program team, as well as with interested family and friends. Once a behavioral record has been set up, it takes only a few minutes each day to fill it out. An online behavioral record spreadsheet has been an invaluable tool…

Teamwork

KAL autismtwins.blogspot.com I clutch John’s hand as we enter his brother’s school. We are here to pick up Sam after week two of an after-school soccer program, a program I thought would be great after hearing that a few of his classmates were enrolled. In the five minutes it takes to find the gym, no fewer than three teachers greet us, see John, and say “Hi Sam!” Their faces look puzzled and I watch them trying to sort it out: Sam has a twin? Why didn’t we know Sam has a twin? We find the gym and look inside. Eight or so boys running between two nets, a coach yelling encouragement. There are just a few minutes left and more parents are filing in behind us. John takes in the open expanse, the rolling ball, and yanks me inside. Before I can get a good grip, he darts free. At…

Be the Change: How to Shift Autism into the Mainstream

Caitlin Wray www.welcome-to-normal.com I have a neighbour who can’t say “autism.” Both of us having two young kids, we had a casual chat on the lawn the other day as neighbours often do, about the usual stuff. Except of course, the “usual stuff” for parents like us will strike others as highly unusual. It’s hard to make small talk about our kids without autism finding its way into the conversation. It used to make me uncomfortable; it can be awkward to find succinct ways to weave such a complex situation into an informal chat. But I no longer let society’s discomfort with autism deter me from talking about “it,” because “it” is part of who my son is, and indeed has become part of who I am. If my neighbour gets to talk about her daughter’s ballet class, then damn it all, I get to talk about my son’s karate…

How Do People React When They Learn Your Child Has Special Needs?

Emily Willingham daisymayfattypants.blogspot.com What response do you get from people when you mention your child’s difference or try to explain it to them? I can categorize our responses into three distinct groups. 1. From total strangers — and my mentions of autism in this context are rare — the response is pity. Clearly pity, and with it a lack of understanding of what I’m even talking about. And then, of course, I find myself struggling to clarify why pity simply isn’t necessary, to get across with pith what a great person my son is, what a total joy it is to have a wonderful person like him in my life. It’s rare that I bring up autism to strangers, although if I were savvier, I could use it as a way to enhance awareness and downgrade the pity response. 2. From casual acquaintances, such as parents of other children and periodically from others closer to…

Special Ed 101

Kristina Chew autism.typepad.com Prior to my son Charlie’s diagnosis of autism in July of 1999, I knew even less about special education than I did about autism. I literally didn’t know anyone — family members or friends — who had ever been in special ed. I had less than zero idea if any of the public schools I had attended back in the 1970s and 1980s in California had special ed classes. I’m sure they did; to say that I was ignorant is an understatement. Now I realize that my lack of experience and knowledge about special education back then speaks to a general attitude about special ed, a sense that it’s great that our society provides it, but best not talk to about it; that special ed is for “those kids” who don’t do well in school, or have behavior problems, and so forth. So here is a bit…

The Miracle by the Lobster Tank

J. Lorraine Martin cheeselesspizza.blogspot.com It was a typical, suburban day at my local grocery store. Besides loading up on Mad Housewife wine, I had other highly important plans: channeling the wisdom of Pavlov on aisle 12 as I held up a bag of Skittles — think mad housewife becomes mad scientist. What can I say? An autism mom often reaches new heights (or is it lows?) to help her child step outside of his self-imposed postage stamp zone of perceived safety. In case conducting Pavlov experiments isn’t in your shopping repertoire, allow me to explain. You see, my oldest son, at the age of nine, developed some intense fears at our local grocery store. Despite uneventful years of happy grocery shopping experiences up until that time, he one day became dramatically frightened over the thunder sound in produce when the water sprayers came on; not much later the mooing cow…