Alix’s childhood was hindered by undiagnosed Aspergers until she learned to harness her gifts. Now, at 21 years old, she has already done what most people can only hope to do in their lives; speak to the UN, make a major scientific contribution, give a TED talk, and travel the world.
Alix was misdiagnosed as a child. Told she was strickened with a plethora of mental illnesses and learning disabilities, she spent years desperately seeking answers until she found the right kind of help that enabled her to flourish; piano playing, composing, ballet and science.
Alix is an undergraduate student in Vermont working toward a degree in neuroscience. She is also currently working on several research projects studying autism and schizophrenia. She utilizes the college learning disabilities accommodation program and now lives comfortably with her challenges. Aspergers101 is thrilled to offer you the insights and brilliance of Alix!
I was standing in the post office shipping off a package when I got a burst of inspiration to take this funny picture. It uses humor to describes some of the challenges people with developmental disabilities face but it also helps me vent my frustration and address a wider issue.
First day of school. College interviews. Job interviews.
It seems like the most important encounters that determine the quality of our life are also the most superficial. So much could go wrong in the first impression.
One girl I had just met told me that she thought my body language was condescending.
My rationalization: First off what does condescending body language even look like? I googled it because I was so perplexed and turns out condescending can only apply to language. I think she was trying to say defensive or standoffish.
A man who had just met and conversed with me briefly once told me that my use of vocabulary words like “tantalizing” and “perturbed” in everyday conversation makes him think I am keeping people at a distance.
My rationalization: I am always happy to explain things in a different way in order to clarify what I’m talking about but in this case, they did not give me the chance to clarify my idea. He just made an assumption on my intentions of using “big words” and technical terms when in actuality that is how I talk.
Growing up there was nothing I wanted more in this world than for people to see me for exactly who I am, and like me for it. I drive myself mad looking for this, because identity is unstable. People change as they get older through a combination of experience, genetic predispositions, and neuroplasticity. Aspergers is one fickle diagnoses, mainly because it is susceptible to all kinds of misinterpretation.
And then this miraculous invention called Facebook came out.
I joined Facebook in 2006 when it was still a relatively small community. One thing I loved about Facebook is that the social norms were different from in-person interaction, and often times made things easier on me. I can connect with people and not be criticized for my lack of eye contact or vocal tone.
I can filter my blunt comments, and assess my honesty before I say anything. Additionally, I can access hundreds of people within minutes who share my obscure interests, like Russian history or Phantom of the Opera. I think some of the first groups I joined were “addicted to piano,” and “when I was your age Pluto was a planet.” I had lived in 3 states and 2 countries at that point, and I could keep in touch with all of my friends from around the world.
Nowadays it seems like everyone I know is on Facebook and as a result, I have to keep my freak flag on a leash. Both of my grandmas are now on Facebook, and one of them said to me: “You better watch what you post because it might come back to bite you.”
What does that even mean? Do you even know how to use Facebook grandma? Turns out she did and also learned how to use an iPad way before I’d even seen one. To give you an idea of some of the posts my grandma was referring to, here is an example:
Dear girl who cheated off my exam today,
You’re a jerk.
Unfortunately for you, So am I. I put all the wrong answers in for you to copy and waited until you left to put the right ones in. It’s called studying.
Your passive aggressive classmate, Alix
I think social media’s impact on how we incorporate technology in our daily lives can condition us to display Asperger-type symptoms, the kind that my social skills training and family taught me not to do. Growing up my mom taught me to never use my cell phone at the table. To this day I never pull out my cell phone at a nice restaurant, even when asked to. Now when my friends and I go out, one is Instagramming their cocktail, the other answering a text from her husband, etc.
I don’t meet very many people my age who impress me with their ability to hold down a sincere conversation. I went to a youth group activity that was a meet and greet for young adults. I knew absolutely no one. I turned to this guy next to me and asked casually “What’s your name?”. He responded with one word “Martin,” and didn’t even look me in the eye, but instead was looking down at his phone where he had Facebook open.
I was talking to a CEO who runs a prominent company, he told me that when he hires graduates he looks for people who can look him in the eye, shake his hand, and carry on a conversation on top of meeting a few of the skills that would contribute to his company (e.g. using a computer program, or proficiency in Spanish, etc). He looks for people who have complex analytical skills or specialize in mastering one area. He could care less about the transcripts or grade point average of our degree.
There is hope for us with autism and there is a reason we should constantly strive to improve our social skills on top of pursuing our interests, because there are people who appreciate us for who we are and what we have. But in order to bridge that gap, we must have those social skills, even if Facebook and other social media is degrading the quality of interactions we have with people in person.
When I was diagnosed with Aspergers, my parents enrolled me in 48 hours a week of social skills and coping mechanism training. That was 10 years ago. These are 23 friendly suggestions I still find to be true and carry with me today.
My 23 Truths
Never follow advice that you intend to carry out by hurting another living being.
Find what you love and pursue it even if it means working twice as hard in other areas of your life in order to do so. It can be one thing or it can be many. Obsessions and interests can lead to successful careers. Additionally, if you’re interested in a task you’ll do better at it.
Following blind happiness is a better decision than choosing certain unhappiness, as long as you apply appropriate practical skills and common sense (which can be learned in a Google search). No matter where you are and what situation you may be in, this isn’t your parent’s, boss, or teacher’s life, it’s your own. With the accumulation of knowledge and self discovery you can make choices that will shape the life you want. If you want to be a scientist, do what you need to in order to make that happen. That path is not exactly linear, you might have to do things differently than others, but that doesn’t make it bad or wrong to pursue. I had an incredible amount of difficulty socially when I started college in Charleston, SC. It was the weirdest feeling because I had wonderful friends there as well as great education and academic support. It never made sense why I was unhappy there but the moment I moved up to Boston 2 years ago, the unhappiness slipped away. Against the advice of my family, I drove to Boston, found an apartment, and an internship in one weekend, and met the love of my life. This move was all based on the feeling that Boston was the place I needed to be. I fit in well because I could talk to people about quantum physics and current issues, and have people eagerly teach me more than I could possibly understand, rather than think I’m weird.
If one way doesn’t work, don’t linger on the frustration of a broken road. Find a better way.
Study with people who are smarter than you and sit next to the nicest person in class.
A great idea implemented in an effective way will always trump prestige and superficial qualities that seem out of reach for those on the spectrum. Your mind is an asset, and if you use it properly without shame or pride, you can change the world.
The best way to figure out whether someone is manipulating you or helping you is to ask yourself: Do they want something from me? People can only manipulate you if you have something they want. Special educators sometimes neglect the needs of high-functioning autism in order to retain disability funds.
Finding who you are is a continuous journey, not a specific event that happens. It frustrates me how adolescence is deemed a time of searching for identity, because it implies that becoming an adult means you know every aspect of who you are. That’s a bunch of Bologna. I’ve met people of all ages who vary in behavioral patterns and world views. Accept, understand, and utilize your strengths as they are at this moment, and use a growth mindset to improve yourself.
The easiest way to interact with someone who thinks and feel differently then you do is to ask them questions.
In a debate, argument, or conflict, always validate the opposing persons view before stating your own view.
When in doubt, Google. When googling, question the reliability and truth of everything. Look at the people who make claims, and ask yourself if they have a sufficient amount of knowledge to make such a claim. The more proactive you are in your education, the less you have to rely on others for answers. You can find all laws, licenses, addresses, and criminal records within a simple click. This is something you should do in regards to everyone involved in providing accommodations for you such as counselors, doctors, and tutors.
Social media is not a substitute for in person interaction. Social skills like table manners or looking someone in the eye when you shake their hand are invaluable.
Don’t take advice from hypocrites. For example, don’t take relationship and marriage advice from someone whose had 3 marriages end in divorce.
Vaccines do not cause autism. This study was published by a scientist who was jaded by his funding sources, and falsified his data in order to get published. The journal that published his research revoked the paper, and denounced its validity after learning the truth of his research methods.
Firm and non-flexible opinions stunt intellectual growth and stifle your own truth. Research all sides of one issue before deciding for yourself.
Make choices that bring you closer to your goals, not based simply on what you feel. Mastering this habit will help you overcome lethargy, anhedonia, and other symptoms of depression and social anxiety associated with Aspergers.
People are just people. No matter what it may seem, the most seemingly superficial or flawless of individuals have imperfections and insecurities. The success of a person is determined by how they deal with their imperfections and insecurities, not the existence of them. Everyone has their weaknesses, some people are just better at hiding it than others.
The energy you put in will be returned to you. Say positive things to yourself and surround yourself with positive people even if you don’t feel it, because it will make your surroundings positive and supportive to who you are. You might have to boot out some psycho family members or close friends if they are creating more negative emotions than positive, but trust me it’s worth it. Be brave, set those boundaries so you and others can be inspired to improve.
The easiest way to affect an individual’s first impression of you is with make up, hair, clothes,and body posture. Changing facial expression, tone, and word choice take a lot more work. Hair and makeup never came naturally to me and I didn’t start learning how to use them until I went to college. Pinterest has lots of simple tutorials. Because of sensory issues, I only wear makeup for special events.
People are not divided into two categories of “weird” and “normal”. Everyone exists on a spectrum.
Go out of your way to figure out what aspects of yourself you can improve on, and which ones you can’t. Love every part of yourself either way.
There is never any need to be mean. Being nice does not equate to being a pushover and you can always present constructive criticism in a respectful manner.
Keep firm boundaries in the work place. Your personal and private life are better left separate. If you don’t believe me, try bringing up your aunt’s kidney stone as a casual conversation and tell me how it goes.
I send all my love and support to all of you reading this post. -Alix
An Aspergers Perspective on Living With Sensory Integration Issues.
Some of the greatest struggles I had before I went to treatment at 11 are sensory integration problems. My sensitivities to food, certain fabrics in clothes, and the feel of water on my skin created a huge struggle to be a fully functional human being. Growing up, I would throw tantrums whenever I would shower (gross right?), and I think at one point I went 3 months without a shower because whenever I did, it heightened my sensitivity to stimuli, and all inferno would break loose. I would scream for hours.
I would barely eat anything and what I did eat, I would eat over and over and over again. I loved mashed potatoes and yogurt for a time, and I think my mom let me eat it for breakfast when I was little. She was just grateful I would eat something so I didn’t starve to death.