Finding Friendship in the Flub-ups

By Lydia Wayman Every year, I look forward to the OCALICON autism conference in Ohio. The three days are the one time I get to be with my autistic friends who share my passion for advocating. It's an absolute whirlwind from start to finish. Teachers, therapists, and family members come to OCALICON to learn better ways to improve our lives. There are about a dozen autistic adults who attend, and since most of us are good friends, we tend to team up for presentations in different groupings every year. This year was extra special. I … [Read more...]

Why Do I Love the Things I Do?

By Lydia Wayman Advocacy and Questions Autism advocacy is all about questions – either the ones people ask about their own kids or the issues nobody seems to realize they are getting all wrong. I have a lot of the answers memorized, so often, I can just spout it off verbally. If it’s something I haven’t worked through yet, I usually have to spend some time and then work it out on the keyboard. I might ask that person if I can get their email address and get back to them on it. Why do you freeze in place and stare at the shelves in the … [Read more...]

Autistic Reflections: What Your Mirror Can’t Teach You

By Lydia Wayman I think a lot of the lack of understanding we have about each other comes down to the fact that most people judge the whole world on the basis of their own individual experiences. Many people interpret and criticize others' behaviors, needs, quirks, and struggles from the perspective of their own minds, their own bodies, and their own lives. There are so many misconceptions about autism and autistic people, and many of them are based on these perspectives that differ radically from our own. To be on the autism spectrum is to … [Read more...]

Why is Executive Functioning so Hard?

By Lydia Wayman Like most kids on the spectrum, I had major challenges with executive functioning. I left things everywhere. I could do my homework on my own without a problem, but I couldn't keep the assignment book up to date, so I'd get full credit on the paper and then miss points for writing the wrong due date. And if asked to "clean up," I… didn't. As I got older, I had trouble remembering appointments, keeping track of paperwork, and working with money. I didn’t know why I had so much trouble--I was really working hard and my … [Read more...]

Why Does It Matter?

Why are you so loud? Why can't you whisper? Why are you holding your spoon like that? Why do you run weird? Why do you do that stretching thing like every four seconds? Why can't you sit nicely like the other girls? Why do your tights fall apart after one wear? Why can't you keep track of your stuff! Why do I have to stand here and list every step to get you to clean up? Why do you leave your stuff everywhere? Why are these black shorts fine but the other pair isn't okay? Why won't you play kickball in gym glass? Why don't you play … [Read more...]

Mito and the Monster Under My Hospital Bed

Mito… a progressive disease that affects almost every part of my body in some way. In fact, it's almost certain that whatever the genetic error that has caused my mito is responsible for my autism as well, as autism is pretty common in mito. Suffice to say that I've had more than a few hospital stays--in the past four years, I've had somewhere around 30 admissions and many more trips to the ER. I have written and spoken at conferences and with individuals about medical advocacy and how to do what you can to make sure you are adequately … [Read more...]

How to Kill a Stinkbug (and Other Independent Living Skills)

Since I wasn't finally, formally, correctly diagnosed with autism a few weeks after turning 21, I didn't grow up with special attention to non-academic skills. I was the eight-year-old with her nose buried in The Hobbit. So when I was told to clean up and didn't follow through or had a meltdown over things my parents didn't understand, it was seen as behavioral and not a sign that I didn't know how to do or manage something. Even now, like many autistic people, I have such a scattered skill set that most people have trouble reconciling my … [Read more...]

What I Wish I Could Have Told You

Age 2: I scream when you're trying to dress me because lace feels like steel wool, tights feel like fire, and shoes feel like sand paper. Age 3: I refuse food because my brain sees everyday food as disgusting and inedible. It's like eating a muddy shoe. Age 4: It's confusing for a little kid when trusted adults encourage and even force me to do things that feel threatening, like watching fireworks or having my hair washed. Age 5: I sit with the teachers at recess because I don't understand what the kids saying to me or the rules of … [Read more...]

This is Some Village!

Last week I went to OCALICON, which is one of the biggest (if not the biggest) annual autism conference in the country. It's one of the best things I do all year. I got to speak three times this year, including my first big solo session…90 minutes presenting to mostly professionals about how their language around autism affects the kids who are hearing it. I also spoke on a panel as part of the AGI Young Leaders with my amazing advocate friends. The third day, I spoke with a dear friend and mentor to a smaller group about medical … [Read more...]

How to Grow a Kid

I grew up knowing that I was broken somehow and it was my fault. At school, I heard things like, "Come on, you know better than this!" and "You are smart enough to know better!" and "If you would be a little less maniacal about your grades, kids wouldn't be so mean to you." At home, I heard that I was self-centered and careless. I had a big list of negatives I could tell you about myself, but only one positive: I was smart. But I didn't have to work for my grades and test scores. They just happened, because I have a really good memory. So, the … [Read more...]