I once had the following conversation with a psychologist:
“I am an autism expert. I know everything about autism. I read loads of books and I am autistic.”
“No you don’t, Lucy. You are one person with autism. You know a lot about autism, but that doesn’t make you an expert.”
Cue intense meltdown where I screamed and smashed things for over an hour.
I was 21 when that exchange took place and extremely stubborn. I was arrogant, had little to no understanding of other people’s views and if I disagreed with you, it didn’t end well! These days, six years, seven psychiatrists, five house moves, several assertiveness courses and lots of reading later, I would like to think I am less ignorant and less stubborn. I also realize that the psychologist was right. I am one person with autism.
This doesn’t make my voice irrelevant, though. Although I cannot speak for everyone with autism, I can advocate for them. Use my voice to educate people on all different types of autism. Tell people my personal experience of autism. Explain how poor the services and support available are. Tell them how I ended up going into care because no one would listen to my Mum’s concerns about my severe behavioral problems. Offer advice to service providers about how to make life better for this generation of autistic children and adults.
So no, I am not an autism expert, but I will always be an advocate.
The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.
I’m not a fan of change. I like my comfort zone and keeping things “as is” because I feel comfortable with “as is.” I know what to expect from “as is.” So, when change comes along and rears its ugly head, “as is” goes out the blankety-blank window.
Yeah, change sucks. Sometimes. Not always.
No time is change more expected, more discussed and more debated than at the start of a new year, so I always jump on the change bandwagon…for about a week. When the calendar marks the end of one year and the beginning of the next, change is expected. Change is encouraged. We are all supposed to change for the better, thus having a better year than last. So, come January 1, I decide to change, too.
I’m going to change by eating healthier, exercising more, swapping screen time for snooze time, swear less, reduce my incessant need to please people and decrease my wine intake. Change, change, change. It’s no wonder I’m not a fan — change and I, well, we don’t jive, so I typically fail miserably.
I continue to eat Cap’n Crunch cereal for breakfast, binge-watch “Homeland” until the wee hours of the morning, skip the gym (sometimes I just totally forget I thought about going), swear like a truck driver, people-please to the point where I don’t remember what pleases me and beg my husband to stop at Total Wine while traveling. Promise. Fail. Repeat.
Merriam-Webster dictionary defines changes as “to become different; to become something else.” What if this new year I decide to not become different or something else? What if I decide to keep on eating Cap’n Crunch cereal for breakfast, forget to go to the gym (time and time again) and keep on talking like a truck driver? What if staying the same isn’t so bad (with the exception of all that sugar in Cap’n Crunch cereal)? What if I’m resistant to change? What if change is scary or bad? What if something becomes different and I want it to go back to being the same? Can I change it back?
Yeah, change sucks. Sometimes. Not always.
As it turns out, no matter how much Cap’n Crunch I eat, change comes whether I like it or not. Change often comes when we don’t want it to. When we aren’t expecting it. When we want nothing more than to continue with status quo, when “as is” seems good enough. It seems no matter how hard I try to hang on to “what used to be,” it quickly becomes “what was.” Especially when it comes to my kids. As I watch them growing up, moving forward and “changing,” I dig my heals in, tie a harness around the biggest tree I can find and hold on to “same” as long as I can. Guess what? The tree falls over, the harness snaps and I fall flat on my face, landing in a big pile of change. Yeah, I know, “it’s what’s supposed to happen,” but it doesn’t mean I have to like it.
Change sucks. Sometimes. Not always.
There was a time when I longed for change. A time I begged for change. A time I prayed for change. A time when I feared the status quo and “as is” had me freaked out. I desperately wanted things to change, things to become different, even though “different” was precisley the driving force causing me to wait for change to come. And I didn’t want to wait for a new year for change to arrive.
I wanted my son Ryan’s language to change from scripting to communicating. I wanted his overloaded sensory system to change so his day-to-day life was easier for him (and yes, selfishly, for the rest of our family). I wanted his lack of desire to connect and make friends to change. I wanted my son’s insistance on routine and his fear of change to change. I wanted his diagnosis of autism to change, for him to not have a diagnosis at all which would make all those other changes I wished for no longer necessary.
But with all this change I bartered and begged for, what really needed to become “different” or to “become something else” was me.
I needed to change… my understanding, my fear, my ignorance and my awareness. My son didn’t need to change, I did. When he was scripting, he was communicating — I just needed to change how I heard him. When his sensory system was overloaded and he was in the throws of a meltdown, I had to change how I viewed the world so I could see his view in order to help him. I had to change my thinking of what a friend was and what a friend needed to be. I had to change my fear of disrupting his routine and find ways to help him cope when the routine had to change. I had to take my worry, fear and lack of understanding of autism and change how I viewed this diagnosis and realize that autism did not make my son “become something else.” He was and has always been Ryan. I just needed to change how I saw him.
And I did. This time, change did not suck. This time, change was good. This time the status quo needed to be disrupted. “As is” was no longer cutting it, and it was hurting my son. This time, I had to “become different” and “become something else.” This time, change didn’t hurt me. This time, change saved me.
It was my insistence on things being the same — the same as they were for my oldest son, the same as they were for kids in my son’s daycare class, the same as they were for my friends’ children — that caused me to want change for him. And at the time, I believed this change was best… for him. Yes, in some ways those changes may have helped Ryan communicate better and get through the ins and outs of his day better, but he didn’t need to change — I did.
Change sucks. Sometimes. Not always. But when your heart is in it, really, really in it, you can change. You can “become different,” and that difference may change your world and the world of someone you so desperately love.
Wine and Cap’n Crunch will not change though. Guilt be damned.
The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.
I am (or was) terrified of people because of how easily a faux pas can diminish the chances of a good first impression or even one afterwards, and this is the result of my frustration, being on the autistic spectrum and susceptible to social maladaptation.
In the following poem, I am a force to be reckoned with, as my effervescing anxiety manifests in loud turns of phrase and swift dervishes of verse that recall back to the poem it was inspired by, “Alone” by Edgar Allan Poe, and in it I am larger than my own reserved self when I am off the stage. The message itself is more important than the construction of the piece as based on its reception, this poem strikes a chord in many people’s hearts. As an Asperger’s syndrome awareness advocate, bringing people together through mutually recognizing our own timidity in social situations is the most beautiful spoil of my work.
One of my closest friends once told me that he does not experience social anxiety because he has no recognition or fear of awkwardness that may result from a social blunder. While this is a way to easily dismiss this anxiety, sometimes it may magnify it because learning how to forget to recognize your own awkwardness increases your chances of committing it anyway. This is why I continue, even to a minuscule extent, to fear the judgments of others, even when they do not matter in the grand scheme of things. Of course, I was feeling the pressure to be more conforming to what is socially acceptable when this was written (which I instead invalidate in the poem by mentioning the transience of acting cool), so this makes this piece I believe one of the better ones in my repertoire.
I hope you enjoy it just as much as I did writing it.
“Terrified of People,” by Iain Kohn
And yet, in spite of all my differences from the common person,
there is no more significant affliction to me than how I like to isolate myself
from common people too.
Loneliness is my specialty like trembling is that
of an earthquake, or how a closet is designed
to hide all the right parts of me, or waves wash away the completed work.
The few friends I have I never get to see as often
as my peers at, say, school, who constantly talk
with gaggles of teens stampeding aimlessly. But
as they sound their staccato foot stomps and
strange shouts of shameless incantations, my right to enter
a conversation with other friends shatters with the shyness of Asperger’s syndrome.
I am terrified of people.
Now, a common person would say that my disorder is mere shyness and implore
me to get back on my feet, saying, “Hey, maybe there’s someone who shares
your common interests.” And I respond:
Surely, you know someone with as much of a passion for language as I do?
How about people who would rather do nothing than
watch a football game? Someone who would rather choke on Legos than take a selfie?
And then you think, “Well, he’s not trying.”
But you must understand that I am terrified of people.
There is a treasure chest of good qualities I can display to the world,
but day by day I choose laptop screen,
video game by video game letting social awkwardness infiltrate enemy territory.
I have no escape. When you look at me, already I am thinking of what you are thinking of me,
and my awkwardness will diminish my chances of making a friend
as quickly as dust settles on long-forgotten opportunities,
I am terrified of people.
I am terrified of people.
And yet, I secretly enjoy having a swing set all to myself,
a conversation just to me, the air blowing into my face from a mile away. I have resigned to how I will never be normal and started searching for an identity.
After, not many people have the willingness to stand up
for their weaknesses, but me, I make them willpower.
New Jersey Governor Chris Christie signed a bill into law on Monday that has prison terms up to 10 years for people who endanger the welfare of those with developmental disabilities, reports Asbury Park Press (APP).
Senators Steve Sweeney and Robert Singer proposed the law after they heard the story of Parker Drake, who was allegedly bullied by two acquaintances last year. Drake, who has autism, jumped off a jetty into the Atlantic Ocean on Feb. 26, 2015, and Nicholas Formica and Christopher Tilton, who reportedly bribed and encouraged him, took videos of the incident and allegedly posted them on social media, NJ.com reported.
In an interview with APP prior to the passing of the legislation, Drake stated, “I didn’t really think I was going to make it,” adding that he had no idea he was going to be jumping into the cold water — or filmed. “I would like for them to be prosecuted, and I would like for there to be better laws to protect disabled people,” he said.
Per the new law, it’s now a second-degree crime to “create a substantial risk of death for someone with a developmental disability.” The crime is punishable by five to 10 years in prison or a fine up to $150,000, or both. Legislation for lesser offenses is also now in place.
“These added protections should send a clear message that this type of bullying and dangerous acts against those with developmental disabilities won’t be tolerated in New Jersey and that those who do so will be held accountable,” Senator Singer told APP.
Dr. Suzanne Buchanan, Executive Director of Autism New Jersey, expressed her gratitude towards the lawmakers and explained to The Mighty what we can do to continue making the community a safer place.
“While the law will hopefully offer greater protection for our most vulnerable citizens, we must continue our proactive efforts of raising awareness to help build communities that embrace and accept individuals with autism,” Buchanan said. “Whether it be via character building, awareness campaigns or disability support programs, children and adults alike will have a greater understanding and sensitivity for the disability community. These qualities will hopefully reduce episodes of harm and increase meaningful inclusion for individuals with autism.”
Becky Large, a local woman whose son has autism, has lead the charge in getting her town to declare itself autism-friendly. Surfside plans to offer accommodating restaurants to families with special needs and fun sensory-friendly events at the local aquarium and movie theater.
“[We’re] creating opportunities for people to be able to leave their homes and feel comfortable and if their child has a meltdown, everyone around them gets it and it’s OK,” Large told the outlet.
When you told me about your child, when you first saw signs of autism in them right around their 2nd birthday, you looked at me with tears running down your face. You told me that was the first time you got him a diagnosis and how relieved you were finally to know what it was so you could help.
You then asked me, “Do you think my child was born with autism? Was it something I did? What could I have done differently?”
I didn’t know what to tell you at that time. It reminded me of a time before when I was again speechless when a parent had asked me what will happen to their child when I’m gone. I believe it’s these types of questions that are always the most difficult and most sensitive for our community to answer.
I remember that conversation like it was yesterday. How I started telling you there is no medical detection or cure for autism today and how if you’ve met one child with autism, you’ve met one child with autism. Then I started to tell you about my story. How I was nonverbal until I was 2 and a half, had regressed shortly after that and how I was diagnosed with autism at 4.
You see, back then, I’m sure my parents would have told you if you asked them the same question that it was something that happened to me while I was getting older. Today I can tell you that autism has made me the person I am, and I wouldn’t want it any other way. It wasn’t always like that, but it is now. I continued the conversation by giving you my card and telling you, although I’m not a scientist or an expert in the field, that regardless if your child was born with autism or not, the journey you are on right now is one countless parents are going through. Please don’t play the blame game with yourself. It will do you no good.
Repeat after me: it’s not your fault.
Every second you blame yourself for your child’s diagnosis is one less second you have to help them. For anyone reading this, some days are going to be tough (I know this from experience), but I promise you there are countless advocates out there — like me — who will be there to help you. Become an advocate for your child and always know that if you need someone, I’m only one message away on Facebook.
As you continue your journey, you’ll find there are many people like me who are willing to help you. Don’t close yourself off to us. Embrace “community,” and when the tough days come, know will get through them together.