What Does Your Family Need?

Family Needs AssessmentFamilies which include members with intellectual and developmental disabilities (I/DD) have a variety of needs from obtaining healthcare to navigating social service systems to emotional support. And, these needs can be substantially different from the needs of families who do not have a member with I/DD. That is why organizations such as The Arc exist: to help families meet those unique needs.

Now, an international team of researchers is working to identify and prioritize these needs and compile the data into a report that will help organizations such as The Arc, early intervention programs, family-related and human service organizations better understand what needs are the most critical to families and seek funding to provide for those needs.

Can you help? If you are the parent of a child with I/DD from birth to age 21, you can take this online survey, called the Family Needs Assessment (FNA) and help us understand exactly what your family needs to thrive.

But the FNA survey is not just about collecting research. In addition to providing crucial information, the survey is designed in such a format that families can use it in their planning processes for obtaining specific family support. And it will provide immediate links to the best online resources for each type of need identified.

The survey consists of 75 “needs statements” that relate to 11 areas of family life including health, daily care, social relationships, family interaction, spirituality and economics among others.  Each individual taking the survey will rate the extent to which specific “needs statements” represent a need for their family on a 5-point scale. If you would like to take the survey, it should only take 15-20 minutes to complete. Find out more and start the survey at the at the Beach Center on disability at the University of Kansas website.

You’re Invited to Achieve Momentum at The Arc’s National Convention

2013 National ConventionWhat does it take to achieve momentum in your life, in your work, and in the movement for people with intellectual and developmental disabilities?

Join The Arc for a National Convention filled with innovative ways to help you do just that – new information, new programs, new technol­ogy, and new ways for you to keep moving forward toward your goals! Register now to attend the premiere event for the intellectual and developmental disability movement in Bellevue, Washington just outside of Seattle August 3-5 and join hundreds of other individuals, families, advocates, experts and professionals in the field for three days of informative sessions, unique events and opportunities to connect. Here are just a few reasons to make your reservations now:

  • Cutting-edge technology demonstrations – discover the latest technology innovations from organizations like Verizon, Microsoft and more – and examples of creative ways chapters of The Arc are using assistive technology.
  • Dozens of sessions focused on supporting self-advocacy, cultural diversity, building our grassroots network, using technol­ogy and innovations in family support.
  • A vibrant Marketplace with goods and services catering to you including The Arc Store and Entrepreneur Alley which spotlights microbusinesses run by individuals with I/DD.
  • Meet-and-greet events just for self-advocates and siblings hosted by The Arc’s National Council of Self Advocates and National Sibling Council.
  • Red Hot on the Red Carpet and The Arc & Sprout National Film Festival – we’re bringing back a crowd favorite from 2012 and rolling out the red carpet again as a lead in to our always popular film festival featuring shorts for, by and about people with I/DD.
  • A Night of Laughter and Dance: an opening night event from our local host with live entertainment from Jet City Improv and two local bands with self-advocate musicians.

And, if you book before July 5, you can take advantage of registration discounts and special room rates at the Hyatt Regency Bellevue on Seattle’s East Side. See you there!

Special Thanks to Our Sponsors: CARF, Essential Learning, Hammer Travel, Marsh, MediSked, MetLife, and Rest Assured

Get in the Game! Sports and Autism

Athletic womanSports are a huge part of many kids’ lives.  Not only is it a social gathering for adolescents to meet friends and learn to be part of a team, it also encourages healthy active lifestyles, and as we know exercise is important for everyone – disability or not. Some parents might think that having a child with autism means playing sports may never be a reality for their child. However, sports can be just as beneficial, if not more, for children with autism.

While many team sports such as basketball or soccer may be a little bit more challenging to grasp due to gross motor coordination, sensory problems or communication issues, individual sports may be the perfect fit. Individual sports like swimming, track and field and karate provide structure and team camaraderie while at the same time being very individualized. This perfect mixture could be very beneficial in allowing the child to fully participate in the activity at their own level while not having the social anxiety that can be brought on from other involved team sports. In a basketball game there has to be that thought process of knowing when the ball is going to be passed to you or who to throw to next.  A sport like swimming permits the child to focus in on one skill only helping to keep their attention and reducing that social anxiety that can be brought on in other team sports.

This team aspect, while helping them develop their motor skills, will also help them develop their social skills too by providing the feeling of being a valued member of a group and increasing self-confidence.  Individualized sports also eliminate the fear that your child will be picked last for the team or “ride the bench” the whole game, creating a sense of failure and rejection in their heads and turning them away from the sport completely. While a child may come in last in a track race, putting the focus on just finishing the race and having their teammates cheer them on to the finish line can be a great self-esteem booster.

Another great aspect of individual sports is the ability to continue participating throughout one’s lifespan. Individuals with disabilities have a higher prevalence for obesity and one large contributor to that can be a sedentary lifestyle (although other factors are also influential). Encouraging fitness at a younger age will help to find fun inclusive ways to exercise that can be carried on into their adult years too.

The Arc’s programs such as HealthMeet and the Autism NOW Center are great places to turn to for valuable information and resources on fitness and healthy living for individuals with autism and other developmental disabilities. Autism NOW’s website contains printable handouts with dietary recommendations and tips that promote healthy eating habits as well as a Health Promotion Guide  containing ideas and suggestions for developing and sustaining a healthy, active lifestyle for individuals with autism.

Shining a Light on Violence Against People with Disabilities

On any given day in the United States, someone with an intellectual disability becomes the next victim of violence, and usually without much notice. This month, for example, a house manager at a group home for adults with intellectual disabilities in Maryland was charged with multiple counts of assault and reckless endangerment for physically abusing a resident. No one would’ve ever known, except the assault surfaced in a YouTube video providing clear evidence of the crime. And, one ESPN producer reached out to The Arc and other disability organizations recently about a story involving a coach accused of sexually assaulting a 15-year old participating in Special Olympics. Upon further research into the issue, the producer was so alarmed by the sheer number of people with disabilities who are sexually assaulted that they requested others to speak out in an effort to expand their report.

To the shock and disbelief of many, these disturbing instances of violence are commonplace in the lives of people with disabilities. The National Crime Victim Survey reveals that people with disabilities are twice as likely to become victims of crime compared to those without disabilities. Even more alarming, people with intellectual disabilities are more likely to be victimized compared to those with other types of disabilities (such as physical disabilities). The Arc receives calls from all over the country – from concerned family members, friends and people with disabilities themselves – seeking help and answers. They often need to know what to do next, where to get legal assistance, how to help an attorney understand intellectual disability, and how to find a qualified counselor to work through the trauma of victimization. Traditionally, victim advocates and disability advocates have not shared expertise and resources to address this issue, but that has slowly been changing over the past few years, creating more opportunities for victims with intellectual disabilities to obtain much-needed services and supports.

April is Sexual Assault Awareness month and this week, April 21-27, is Crime Victim’s Rights Week. It’s a perfect time for chapters of The Arc, other service providers and advocates to reach out to their local victim assistance agencies alerting them to the high risk of violence and victimization that people with intellectual disabilities face throughout their lives. The Office for Victims of Crime created a guide in 2012 for states wanting to take a team approach, bringing together law enforcement, prosecutors, adult protective, human services and self-advocates, to ensure equal access to the criminal justice system for people with disabilities. And The Arc offers fact sheets on a wide variety of topics including the Abuse of Children with Intellectual Disabilities and People with Intellectual Disabilities and Sexual Violence.

My Definition of Autism

Andrew ReinhardtApril is Autism Awareness Month and The Arc and Autism NOW are taking this opportunity to ask individuals who identify as being on the autism spectrum to answer this question: “What is your definition of autism?” Andrew Reinhardt is working on a Master’s degree in physical science and has a diagnosis of Asperger’s syndrome. Below is his personal definition of autism. Follow the conversation this month online using #autismaware

By Andrew Reinhardt, Guest Blogger

Being on the autism spectrum to me was at one point in time a defining characteristic of who I am.  It is not anymore.  I’ve largely grown out of needing to define myself in such terms.  I am a very active individual, albeit not as active socially as I would like to be, but in terms of academics, work and family, I am very happy with my life and define who I am based on these parameters, and others.  This has some advantages, since I’ve seen time and again that having a disability, any disability, is not typically smiled upon in the hiring process or beyond in this country.  I’ve done best and even have tended to be hired more often when I learned to shut up and only open my mouth about having Asperger’s when it’s absolutely necessary.  Since I can pass for an individual who is not on the spectrum, at least at this point in my life, I find that it is better to not bring up such issues at all and play the part of so-called normalcy.

But still, Asperger’s still affects me in highly negative ways, though it affected me in worse ways historically.  I specifically avoid shopping at malls, or anywhere for that matter unless its grocery shopping.  I prefer to avoid eating out to ordering out.  These are habits born out of a general social anxiety, as well as several issues such as what to do with eye contact in crowds, the noise levels, the lighting, so on and so forth.  As bad as it is now, it was worse to the point of breaking out in hives during a full blown panic attack before.

This is progress, even if it doesn’t seem like it at times.  Historically, I’ve faced several problems worse than this, such as a severe fear of, and sensory problems with, insects, that caused me to run away from them to the point of running in front of cars at times.  I also was self-injurious at times when I thought I did something particularly bad, though in hindsight I’m not sure I’ve ever done anything particularly bad in my life.  All that said, though being on the spectrum has been a great bane to me throughout the years, it also has provided some good things to my life, for instance my mathematical skills, my analytical skills, and the drive to be more than I am today, the last of which is probably the most important because I’ve met individuals who have the skill, but lack the drive to do anything with it.  I contend that because of my life on the spectrum, particularly the hardships it’s caused, I’ve done better as an adult than I otherwise would have.

Working Toward Healthier Lives for People with I/DD

HealthMeetThe Arc of United States recently launched its new HealthMeet® project, funded through a 3-year, $1 million cooperative agreement with the Centers for Disease Control (CDC). ACHIEVA (The Arc of Greater Pittsburgh) has joined four other chapters of The Arc nationwide, to pilot local health care screenings, provide assistance with health care navigation and offer health promotion activities for people with intellectual and developmental disabilities (I/DD).

“We are extremely excited to be chosen to partner with The Arc of the United States, The Arc of Massachusetts, The Arc of New Jersey, The Arc of North Carolina and The Arc of San Francisco to be part of this project and provide free health screenings across our region,” says Nancy Murray, President, The Arc of Greater Pittsburgh.  “These screenings will allow us to provide health screenings, collect data on the health of people with I/DD and provide training and information on healthy lifestyles.”

Screenings began in March. “ACHIEVA has gotten off to a great start by screening our first 46 individuals and we have collected valuable health data during the screenings,” says HealthMeet screening coordinator Melissa Allen. “We are providing wellness informational brochures and encouraging healthy lifestyles by giving participants a gift bag at the end of their screening.”

In addition, ACHIEVA worked with Eruption Athletics, a personal training program for men and women with disabilities, and they are joining ACHIEVA’s HealthMeet events to offer fun fitness activities and exercise guidance to those that participate.  Eruption Athletics is dedicated to providing athletic trainer-certified programs to develop strength, flexibility and wellness with a focus on men and women with disabilities. This was a unique way for ACHIEVA to partner with a business in their community to enhance the HealthMeet event and put a fun and interactive spin on the benefits of adopting a healthy lifestyle for their participants.

ACHIEVA supports the HealthMeet effort with a bi-monthly electronic newsletter that provides health and wellness information and information about access to healthcare. For more information about HealthMeet you can visit www.thearc.org/healthmeet. If you want to receive ACHIEVA’s HealthMeet electronic newsletter please contact Melissa Allen at mallen@achieva.info.

Running With A Purpose

Jonathan Brunot

Photo courtesy of Verlaine Brunot

This is a guest blog post from Verlaine Brunot, whose brother Jonathan will be completing the Boston Marathon this Monday in honor of Autism Awareness Month. It will be his 9th Marathon overall and his 5th time completing the Boston Marathon.

By Verlaine Brunot, Guest Blogger

My name is Verlaine Brunot and I would like to share with you all a story about the power of perseverance, dedication and willpower.  This is a story about my youngest brother Jonathan.  Jonathan is severely autistic.

Jonathan Brunot was born on March 14, 1989; a healthy child with an expressive personality.  He had lots of eye contact, and his vocabulary built steadily as he began to learn to speak.  However, when he was about 2 ½ years of age, he began to regress dramatically.  His eye contact became non-existent and the few words and even phrases he had mastered in the previous months slipped away into completely non-verbal interaction.  Jonathan would later be diagnosed as severely autistic, a prognosis that meant he could never develop “typical” brain function for his age.

Just. Like. That.

Autism is a lifelong, pervasive disorder.   However, no matter how difficult the circumstances; an autistic person is only limited by the limits we put upon them.

Case in point, our amazing mother. She always taught us that Jonathan wasn’t merely an “autistic” individual, but rather we were an “autistic” family.  It was incumbent upon us as a family to do whatever we could to help Jonathan navigate through this difficult world.

That is why throughout Jonathan’s adolescence; my mother contacted many different special needs programs to enroll Jonathan in as many extracurricular activities as possible.  Since Jonathan wasn’t capable of telling us what new things he wanted to try, we effectively had to “throw him in the deep end” so to speak and immerse him in EVERYTHING.

We signed him up for a bowling league, took him to horseback riding, as well as registered him for a special needs basketball league.  These activities gave Jonathan an outlet in order to expend all his energy as well as to help him assimilate “normal” activities like his older siblings.  Jonathan was not always enthusiastic or attentive during some of these activities; however our mother was still determined to at least give him as much exposure as possible to these different environments.  It was precisely this determination and persistence that prompted my mother to have Jonathan join a special needs running club called ROLLING THUNDER.  The selfless volunteer coaches at Rolling Thunder specialized in assisted running with the mentally disabled and they welcomed Jonathan with open arms.

When Jonathan first joined the running club, he struggled tremendously.  For the first couple of weeks, Jon could not run more then 10-15 yard without stopping, or getting distracted or wanting to lie down.  In fact, Olga began running side by side with Jonathan, at times gripping his belt and effectively pulling him along the trails.  Even after 2 months of practices, Jonathan was still not really grasping the concept of running.  Olga was nearly ready to have him quit, both as a result of her fatigue from constantly pulling him and Jonathan’s inability to connect with the sport.  The leader of Rolling Thunder, Steve Cuomo, encouraged Olga to not give up on Jonathan and worked with her to help Jonathan continue running.  That led to the fateful day when Mr. Cuomo introduced Olga to a running coach named Vincent Delcid.

Over the upcoming months, Vincent was able to teach Jonathan to pace himself, and stretch, as well as how to approach hills and to sprint at the finish line.  Over time, Jonathan developed a great “coach – athlete” relationship with Vincent during their runs and really began to embrace the sport.

After several months of running, coach Vincent  REALLY upped the ante.  He could see that Jonathan was really enjoying their runs and was getting faster and faster by the day.  Coach Vincent told us that he wanted Jonathan to run the NYC Marathon. Yes, THE NYC MARATHON.  26.2 long, difficult miles across all the boroughs of Manhattan!

To me, this seemed initially like an OUTRAGEOUS,  INSANE, EXTRAORDINARY goal to set for Jonathan; but at the very same time there was no way we could doubt the determination of coach Vincent.  Between Coach Vincent and Olga, Jonathan had a support system that could NEVER fail.

On November 2, 2008 Jonathan completed his first marathon in 4 hours and 48 grueling minutes (ING NYC Marathon 2008) and he has hit the ground running ever since!

My youngest brother Jonathan has evolved into a gifted runner and a tremendous athlete. He’s an amazingly inspiring marathon runner who shows me strength and courage everyday… and oh yea, he happens to be autistic.

The proudest older brother in the whole world,

Verlaine Brunot

You can track Jonathan’s progress via the Athlete Alert text system.
Text RUNNER to 345678
Wait for a confirmation text message.
Reply to the confirmation text message with Jon’s bib number 20973
You will be signed up.

Planting Trees (Or How I Learned How to Plan for the Future)

Amberley, Caroline, and WillBy Amberley Romo

My family moved a handful of times when I was growing up. Every time we did, my parents would obsess over the trees. They’d discuss which kind of tree would be best-suited for where they wanted to plant, and, most importantly, the longevity of the tree. They were usually young trees. ‘They’ll grow,’ they said.  Even if we probably wouldn’t live there to see them mature, it was important to my mom and dad to leave deep, strong roots in the ground.

My younger sister Caroline was born with a neuro-genetic disorder called Angelman Syndrome. She’s nonverbal, but astoundingly effective at communicating with an assistive communication device, modified sign language, and, well, pointing. Before I went to college, being one of the roots in Caroline’s tree was just a normal part of my life. Although my parents encouraged me to go off to college where I wanted to—yes, even if that meant leaving Texas – I felt guilty and a bit selfish (‘I really only have to worry about myself now?’). I sought out work with organizations that served people with disabilities like Caroline’s. Now, I work for a national disability organization, but I’m still not home to help take care of my sister.

My parents always reassured me that they would take care of Caroline. They would make sure the necessary financial structure was in place, that, should anything happen to them, everything was prepared. ‘Take the pressure off yourself,’ they told me. How can I take the pressure off when I work down the hall from The Arc’s policy team? When I hear every day about the very real threats to supports and services for people like Caroline?

Amberley Romo 2In June, Caroline will turn 19. I am 22. We’re entering a new part of our lives. A part where I simply can’t assume everything will be taken care of anymore. Here comes the part where I have to know about SSI, and I need to know things like the fact that if an SSI/Medicaid beneficiary has more than $2,000 dollars in their name (whether via a thoughtful gift, or as a beneficiary in a will, savings, etc.) they can be disqualified from their benefits, and…and…and…

I went home two weekends ago to participate in our first-ever Person-Centered Planning meeting. I had never heard of Person-Centered Planning before, but my mother had found a facilitator and was convinced it needed to happen. It needs to be a celebration though, she said. This isn’t just a meeting. We want to make it a party. She fussed about buying favors for the guests, and festive cocktail napkins for the snacks. There was Tex-Mex.

And one by one, various people who are, or have been at some point, roots in Caroline’s life rang our doorbell. Her behavioral therapist, her cheerleading coach, a former school aide and frequent sitter, family members… Fourteen in all.

We introduced ourselves and milled about, strangers drawn around this one vibrant, 18-year-old focal point, and when called to order we drifted into the living room. Caroline waited in the living room the entire time, seated comfortably on a dining room chair placed front-and-center, legs crossed, hands clasped eagerly. We had worried that the situation might be over stimulating for her, that we might see some acting out. Not so. Yet again I underestimated her. She sat on her throne, grinning like the cat that ate the canary, soaking up every minute.

The concept of Person-Centered Planning is that by brainstorming with all of these different people, who all play different parts in Caroline’s life, we will together be able to form a more complete picture of who she is, and how to support her. We already know she tries to get away with things at home that she doesn’t at school and vice versa. (The girl does know how to work people with her smile). So the people who know her at school know a different side of her. (Any high school kid who acts the same way at home as they do at school, please stand up. No one? Moving on.)

For an hour and a half, we considered very deeply what makes Caroline who she is. What does she like and dislike? Who is important in her life? What are her strengths and skills? If someone didn’t know her, what would we think they needed to know in order to ensure continuity and satisfaction in her life? The planning conversation is not one that comes up lightly. My parents know they won’t be able to care for her forever. They’re teaching me that skill they learned long ago—how important it is to start early, to lay down deep, secure roots. I don’t like to think that things will ever change. I don’t like to think that they won’t be around, and I don’t like to think of Caroline living anywhere but with family. I’ve argued with them tearfully that it doesn’t matter where I am in my life or what I’m doing– when the time comes I’ll be her caregiver, I’ll always have enough to provide for her, I’ll do this, I’ll be that. But hoping for the best is not a plan. Even planning well doesn’t guarantee anything. In a world without guarantees it is crucial to plan so that Caroline can continue to blossom, and, to the best of her ability, always be included in decisions about her life.

There is no perfect time to plan. There’s no good time to confront your own mortality, or the other hard truths that necessitate future planning. As siblings, that relationship is often the longest we experience. We are an important and vital part of our siblings’ lives. We deserve to be a part of the process, and it’s vital that we start the hard conversations with our families, if they aren’t already happening.

National Siblings Day is a great day to stop for a minute to think about these things. Or, if not today, a birthday, or an anniversary– any milestone to attach this important conversation to. There will always be a reason to push it back, put it off. But it’s too important for that. We plant the trees so that, someday, there will be shade.

Amberley Romo currently works at The Arc’s Washington, D.C. office as brand coordinator. She is a member of The Arc’s National Siblings Council, and the DC-area chapter of the Sibling Leadership Network, DC Sibs.

My Brother, My Role Model

Jui and brother ChinmayBy Jui Agrawal, Guest Blogger

I am the lucky younger sister of Chinmay Khaladkar. When I think about him, I smile because of all the happy memories that he brings to mind. Whether it is his love for music, cars, travel or eggplant parmesan, he enriches my life beyond words. Having been born with Cerebral Palsy, and the complications that have accompanied his condition, he has unyielding optimism that makes me proud to be his sister.

My family has been lucky enough to travel extensively, expand our worldview and experience the cultures of many countries. However, the one journey that helped me grow the most has been at home, as I’ve watched my role model, my brother, grow and become the most loving and happiest of people.

Through Chinmay’s eyes you see a world where everyone is good and intentions are always pure. He has a way of talking to strangers, laughing at your most lame joke, and making long-lasting friendships. His celebrations always bring together his biggest fans, whether it’s his therapist of 30 years, friends from kindergarten, or family from across the country- a reminder of all the people he has touched with his love.

Over the years, as our family has celebrated Diwali, the Hindu new year, there is a ceremony when the brother gives the sister a gift as a token of appreciation. Chinmay, not having the ability to drive on his own and get me a present, has repeatedly put his paycheck in an envelope addressed to me in his scrawling letters- flooring me his gesture, and showing me the true meaning of selflessness.

Starting at a young age Chinmay has always been the one looking out for me.  Whether it was holding my scared small hand as we went into the darkened basement for a game of hide and seek, or coming to my defense when my parents were angry at me for missing curfew, he has always consoled and protected me, being a true protective older brother.

Jui Agrawal 2Despite our connection, we’ve shared the same problems that all siblings face- the squabbles, the jealousies and the competitions. Chinmay will never graduate from college or drive a car, and as I’ve hit these milestones throughout the years, he has had a hard time dealing with my moving on from our days of playing pretend. Though I have spread my proverbial wings, he feels as though I have left him behind in my journey- Chinmay, an eternal child at heart, will never fully understand that it is because of his love and support that I have learned to fly. For both of us.

As we journey through adulthood, I have become increasingly inspired by Chinmay and realized that I want to dedicate my career to the advocacy of people with intellectual and developmental disabilities. I know that without him, I would not see this extraordinary community as having the humility, grace, and determination that they embody.

Jui Agrawal is pursuing a Master in Public Policy degree at the Bloustein School for Planning and Public Policy at Rutgers University. She currently works at the John J. Heldrich Center for Workforce Development on campus assisting with research related to disability employment. Jui has spent time working in Washington, DC, both at the Pew Charitable Trusts and a boutique government relations firm focusing on environmental, tax, and health policy issues. Most recently, she has interned with The Arc of California and United Cerebral Policy, and will be joining The Arc’s national office in Washington, D.C. as the summer 2013 Paul Marchand intern.

Autism Is “The Matrix”

Wendy KatzApril is Autism Awareness Month and The Arc and Autism NOW are taking this opportunity to ask individuals who identify as being on the autism spectrum to answer this question: “What is your definition of autism.” Wendy Katz identifies as being on the autism spectrum. She is living in Louisville, KY, and pursuing a career in the human services field. Below is her personal definition of autism. Follow the conversation this month online using #autismaware

By Wendy Katz

How do I define autism? It is simple but the total truth: Autism is “The Matrix.” Seriously, it sounds cheesy, but I feel that one reason that I truly related to this classic film is for this reason. What is “The Matrix?” It is everywhere and colors everything, it is the world pulled over people’s eyes to blind them from the truth.

Granted in the case of autism, “The Matrix” is a metaphor: my autism is not a veil blinding me from the truth, but it is a tangible reality, which is everywhere in my world, ever so subtly coloring and altering the contours of my reality and woven into my very fabric in such a way that I am not aware of it and cannot see it. And though I am not blinded from the truth, sometimes my altered awareness does blind me to certain realities tangible to others, whose sight is clear.

Sometimes I am not aware, for example, of subtle politics and actions, which might limit my professional advancement. Other times I might miss the flirtations of a “friend” or the tension in some of my relationships. Some other times I simply cannot see the forest for the trees: I may be so blinded or distracted by a truly “loud” sound or smell that I cannot focus on the true interpersonal undercurrents of a situation. To stretch this metaphor, I may not be “blinded” to the truth, but at times I am “visually impaired”.

When people ask me about the differences between say a psychological issue such as depression or OCD and my developmental disability, the answer comes quickly and easily. There is no slightly off neurotransmitter in my brain that can be slightly tweaked to change my experiences. My very BRAIN is a different shape, and as Morpheus says in “The Matrix”, “The body cannot exist without the mind.” Autism isn’t a social impairment or a need for behavior modification: it is an entire reality, which for better or for worse I inhabit.

One way in which my reality departs from “The Matrix” metaphor, is that on rare occasions, it seems to truly be “for the better”. Sometimes I have a way of looking at the world or solving a problem that is so far outside of the box that it is a true gift. Other times, I find myself seeing straight through a truly smooth manipulator because I am immune to his or her charms. Autism isn’t always a curse but isn’t necessarily a blessing either; it is simply the world in which I live.

So which character would I be in the movie, extending the metaphor for “The Matrix”? I tend to pass well enough in everyday life that some think I was misdiagnosed or “beat” my autism or have such a mild case it “doesn’t count”. But the world I live in, the things I see, hear, feel, smell, touch, taste, and EXPERIENCE are still colored by autism. I have one foot in the “real world”, but I am no Neo; I am still bound by the rules of “The Matrix.”

I tended to identify with Trinity: a ballsy girl with a foot in both worlds, unable to shake “The Matrix,” yet at times able to see through it. I find that when I truly focus, though I still see the world through my own eyes, I can almost extrapolate to figure out the world as a neurotypical person sees it. At times, I feel like a lingual translator of sorts, and I find myself able to translate and explain things to people on both sides of “The Matrix.” I consider this both my “savant skill” when people ask and an invaluable gift.

I remember when the movie first came out, people asked me if I would have taken the red pill out of “The Matrix,” rather than the blue one which ended the “trip down the rabbit hole”. I told them that I would not only grab and dry swallow the red pill, but I wouldn’t bat an eye to see Morpheus and would have cried out in relief, “Oh that explains EVERYTHING!”

All joking aside, autism colors everything I do and all of my many accomplishments, failures, worries, hopes, and dreams. When people ask me who I would be if I wasn’t on the spectrum, I find myself unable to even answer the question. I have accepted that I will never know.