My four-year-old daughter, Helene, was diagnosed with Autism almost two years ago. Since that time, I’ve done a lot of reading about Autism. Through the blogs I follow, I heard about your Google search for “I wish I didn’t have Asperger’s.” I don’t know why you searched those words. I don’t know what you hoped to find. But, I did imagine how I would feel if Helene did that search. I first felt sad, because maybe you wish to change the very person you are, and that must be painful and frustrating. I also felt scared, because I know what’s out there in the interwebs, waiting for you. When you do a Google search for “autism,” you find over 95,000,000 links – some good, some bad, and you may have no way to know the difference.
So, here’s what I hope my daughter will find if she searches those words someday. And, I want you to know it, to0.
You are not alone. As I write this today, 1:88 children are diagnosed with an autism spectrum disorder. According to the most recent census numbers, there are about 14,512,000 high school students in the United States. Enrollment is projected to increase over time, so there’s a good chance that between now and 2018, more than 165,000 high school students will be on the spectrum. There are roughly 24,400 high schools in the United States. So, on average, there are seven kids in every high school in the country with an ASD diagnosis. This means there’s a good chance you’ll find better resources, more information, heightened awareness and – with lots of hard work by people blazing the trail ahead of you — acceptance.
You are smart. Whether you have autism (and its severity) and whether you are intelligent (and the degree to which you are) are determined more by your genetic make-up than by any other influence. You may read many articles or hear people say to you (or in your presence) that up to 80% of people diagnosed with autism are also of below-average intelligence. Well, there are lies and damn lies. And, then there are statistics. A growing body of evidence shows that we need better methods of testing the intelligence of individuals on the spectrum, because traditional methods are not necessarily effective. Autism and low intelligence are not peanut butter and jelly. In the wise words of a smart blogging friend, autism and intelligence are trombones and baseball caps — just because you own one of each doesn’t mean you keep them both in the same closet.
You are worthy of love. You may have difficulty understanding, communicating or otherwise expressing your feelings. That difficulty does not mean you don’t have feelings or aren’t entitled to feelings. It is okay for you to want love — to want a boyfriend, a girlfriend or just a friend. It’s okay for you to want to “fit in.” It’s okay for you to not want these things, too. Those feelings are shared by many others on the spectrum — and off it. If you can’t find the words to express your feelings, know that there are other ways you might wear your heart on your sleeve, get some space, or make a statement. Write it. Type it. Draw it. Paint it. Hum it. Compose it. Sew it. Cook it. Sculpt it.
Let fear inspire you, not break you. In the mind-blowing volume of information on the Internet, you’ll find messages of contagious hope and messages of unbelievable hate. Always remember that these messages come from the same source — fear. When people are inspired by a person on the spectrum singing the national anthem at a national sporting event, winning a Nobel prize, or writing a book, the inspiration is the release of fear — the unknowns of what a person on the spectrum can or cannot do. Seeing someone accomplish goals that only few people reach — on the spectrum or not — renews our faith that anything is indeed possible and enables us to tolerate the uncertainty of the future. Let these moments inspire you to reach beyond what you believe is possible for yourself, whether it’s saying hello to another person, auditioning for a talent show or making the next blockbuster movie.
Paradoxically, when people spew hateful words or commit hateful acts toward a person with autism, that also comes from fear — fear of difference, uniqueness or individuality. Don’t let this fear consume you. Recognize it for what it is – the mean person’s personal weaknesses and insecurities. Mean-spirited words and acts come from people who don’t like themselves very much and act as an odd self-defense mechanism. The mean person’s thoughts and acts really measure more what that person thinks about him/herself, but directing those words at someone else — especially someone else who is different — protects the mean person from internalizing all that nastiness. So, remember this: there is an army out there, armed with information and fighting to raise awareness and acceptance to defeat this kind of fear. For every person diagnosed with an ASD, there is at least one person standing beside him or her, ready to fight the ignorance that allows this fear to fester. Do the math on that. If one in 88 children are diagnosed, how many mothers, fathers, sisters, brothers, cousins, uncles, aunts, grandmas and grandpas are drafted into this army? (I’m not exactly good at math, so I’m just gonna go with a lot.)
Be you for you. I can’t profess to know what life is like when you live it on the spectrum. My guess, based on all that I’ve read, it’s full of challenges and not-so-fun moments. As you navigate the interwebs, you’re going to find — just as in the broader community — the ASD community sometimes divides itself in different – maybe even non-productive – ways. Some believe ASDs are caused by vaccinations. Some do not. Some believe ASDs are not “disorders” that need to be treated but personality traits that need to be embraced. Some believe it is irresponsible to not treat or mitigate certain ASD behaviors or symptoms. Some believe that there is no such thing as a distinction between those on the spectrum and those who are “neurotypical” because there is no one who is truly neurotypical. Some believe very strongly about the medical, dietetic and psychological ways clinicians and parents should respond to ASD.
I don’t want to tell you what to think about these things. I don’t want anyone to tell you. I want you to decide for yourself. I want you to embrace or reject whatever facts you find and draw your own conclusions. But know this. Whatever you believe, there is a place at the table for you. You have a voice. You are worthy of respect. Do not let anyone tell you otherwise. Not every bully tosses blue slushy at you in the hallway. Some bully through false affections and disarming words. Don’t let any bully take away your strongest weapon — the freedom of choosing your mind for yourself.
Beautiful Google searcher, don’t wish yourself away. Wish for ways to communicate; wish for ways to connect to peers; wish for love; wish for a bright future. Don’t fall prey to the venomous words of the ignorant or the empty promises of the opportunists. Listen to the voices of hope, inspiration and love. Don’t believe the deck is stacked against you. Lean on the hundreds of thousands of shoulders of those who stand beside you because they live on the spectrum or because they love someone who does. Don’t give up hope. Give hope.
I leave you with my favorite quote:
I know of nobody who is purely autistic or purely neurotypical. Even God has some autistic moments, which is why the planets spin. — Jerry Newport