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Sexual Abuse of People With I/DD a Global Scandal

/in , /by The Arc

By Theresa Fears, MSW. Theresa has been working in the field of sexual abuse prevention of people with intellectual and developmental disabilities for 13 years. She created the Partnership 4 Safety program at The Arc of Spokane. The Arc has recently launched a National Center on Criminal Justice and Disability to address some of the issues highlighted by Theresa and provide resources for people with I/DD who are in contact with the criminal justice system.

Sexual abuse of people with intellectual and developmental disabilities (I/DD) is a huge problem.

Children and teens with I/DD are three to four times more likely to be sexually abused than are those without disabilities. Some researchers estimate that the lifetime rate of abuse of adults with disabilities is as high as 90 percent.

Childhood sexual assault has lifelong consequences. Childhood sexual assault has been connected to depression, posttraumatic stress disorder and an increased risk of sexual abuse in adulthood.

Adult victims of sexual assault may experience the trauma of not being believed or of being blamed for the attack and risking displacement from their homes or residences. Sadly, many victims do not receive therapy to help deal with the trauma of an attack. In a recent study, only 33 percent of victims received therapy after their sexual assaults. There are many false beliefs about those who offend. The most common is that they are strangers, but according to a number of authors, between 97 percent and 99 percent of assaults were committed by someone the victim already knew. Approximately 44 percent of the perpetrators were connected because of the victim’s disability. Perpetrators may include special education teachers, bus drivers, caregivers and other support personnel.

Research on risk factors for sexual assault of people with I/DD has been consistent over the last 20 years. The frequently reported risk factors are:

  • Lack of education about sexual development and anatomy
  • Lack of information on abuse awareness
  • Lack of healthy relationship education
  • Lack of social norm education
  • Lack of age-appropriate friends

If sexual assault is a problem, then what is the solution? Prevention! There are three levels of prevention according to the Centers for Disease Control (CDC), primary, secondary and tertiary. Primary prevention takes place before harm has occurred; its purpose is to stop sexual abuse from happening.

Secondary prevention happens immediately after abuse has occurred; its purpose is to prevent it from happening again. And lastly, tertiary prevention is a response to the harm of sexual abuse — generally therapy.

The CDC has recommendations for creating prevention programming based on years of evaluating what works and what doesn’t.

Providing prevention programming across the lifespan would require offering education to parents of people with I/DD and, children, teens and adults with I/DD.

The logical place to begin primary prevention therefore is with the caregivers of young children — the parents.

A solid parent education program should have three goals:

  • To increase parents’ understating of the rates of abuse and risk factors
  • To explain parental obligation to support children’s development as sexual beings and
  • To teach parents how to identify and challenge inappropriate or dangerous behaviors of any adult in a child’s life.

How can you begin a prevention program at your agency? First, look to the programs you already have for a natural fit. It would be easier to add sexual abuse prevention training to a parent education, information, support and advocacy program than it would to an employment program for example.

A good free parent education program is the “Where We Live” curriculum created by Pittsburg Action Against Rape (www.pcar.org/special-initiative). Although it is not written for children with I/DD, it can be easily modified. I would be happy to share this information with Apostrophe readers who are interested in beginning parent education in their community.

This article first appeared in the Winter 2013 issue of Apostrophe Magazine (October-December).

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Myths and Facts About the Convention on the Rights of Persons With Disabilities

/in /by The Arc

For the last two years, The Arc has been working with numerous disability advocacy groups to garner support for the Convention on the Rights of Persons with Disabilities (CRPD), which will promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by persons with disabilities across the globe. There are many misconceptions about the CRPD, and we would like to clarify some of the most common myths and facts.

Myths and Facts About the CRPD:

Myth #1: Sovereignty will be lost if the treaty is ratified
FACTS: Sovereignty means that the U.S. is protected as an independent governing body and no outside organization (like the UN) or another country can compel the U.S. to do anything. The same RUD (RUD = legal binding condition added to treaties) is attached to the Disability Treaty that is attached to all human rights treaties passed by the U.S. Senate in order to protect U.S. sovereignty ensuring that in no way can the treaty compel the U.S. to do anything and that any changes in law would have to go through our own traditional legislative procedures.

Myth #2: The treaty will require funding and support for abortion
FACTS: Abortion is not mentioned in the treaty but opponents of the treaty lead folks to think it is. There is nothing in this treaty that changes abortion rights in the U.S. It simply states that people with disabilities should have the same access to health care as people without disabilities. It is a statement of non-discrimination NOT a change in U.S. law or policy.

Myth #3: The treaty will take away homeschooling/parental rights
FACTS: The CRPD is a non-discrimination treaty that does NOT change our law but confirms our commitment to disability rights and allows us to impact disability rights globally. That means NO changes to U.S. laws covering parental rights laws or homeschooling.

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The Declaration: Just Do One Thing

/in /by Ann Cameron Williams

For the last few days, I’ve been at the Coleman Institute Conference on Technology for People with Cognitive Disabilities near Boulder, Colorado. I’m proud that The Arc helped to launch the Declaration of Rights for People with Cognitive Disabilities to Technology and Information Access, a stunning Jeffersonian document written by a small group of dedicated thought leaders in technology and cognitive disabilities. This document, which is available in several versions to ensure equal access to diverse readers at https://www.colemaninstitute.org/declaration, firmly reminds the United States and the world that communications platforms are public domains and therefore need to be accessible for all.

Why is this so important? Imagine, if you will, being unable to use your cellphone, computer and internet, ATMs and electronic banking, online job application forms, online insurance, health information, emergency information, weather, local community information… and anything else you access through electronic or wireless means. Imagine that while you might have the equipment, the languages and instructions that are used in all of these platforms are written in a confusing language that you don’t understand, maybe in words that are too small or which you can’t see clearly and which demand speed in processing that are too fast for you to react to. Now imagine (this is the easy part) that these platforms are how the world around you communicates with and operates upon. But because the platforms upon which the communications are built are not written into your language and communication needs, there is no way for you to move in this social space. You are, as a result, wholly dependent on someone else to help you translate the information you need to know. This is largely the current reality for people with cognitive disabilities in terms of technology and information.

People with cognitive disabilities include those with intellectual disabilities, Alzheimer’s, traumatic brain injury, some psychiatric disorders. While these impairments are the reality for this population, it does not mean that they should by virtue of their impairment be forever excluded from the public communications domain or marginalized as full citizens of this world. They deserve equal access to technology and information that support public communication and which have become a mainstay of social interaction. The Declaration states without apology that technology and information must be accessible to all, not just to those who can read or process or be physically adept in seeing, hearing, and typing to interact with this system. There is a sense of urgency to this because cloud-based communication platforms are solidifying rapidly, and if we don’t take action now, people with diverse communication needs risk being forever excluded.

And we can’t let that happen.

The Arc has been working on this Declaration with other thought leaders in cognitive disabilities and technology to ensure that the needs of people with intellectual and developmental disabilities are included in this new social movement. The Arc and now 57 organizations and even more individuals have formally endorsed the Declaration. I urge each of you to go online and read it yourself. The more people sign on, the more visibility, awareness, and power this movement will gain to advance accessibility in the new cloud based communications and information field. Here’s one more thing: Earlier this week, our small group of thought leaders went around the room and promised to do at least one thing to advance this social movement. As you read this, I ask you to do one thing as well to help us advance this important cause. Perhaps you will review the Declaration and endorse it, or perhaps to send this to your personal networks. Or maybe you can print it off and hang it in your office or send it to your child’s teacher or bring it to your local wireless communications provider. Maybe you’ll write your own blog, post it on Facebook, tweet it out, talk about it in a staff meeting, or simply think about ways to help while you tend your late summer garden… the list of possibilities of what you can do is endless, just as the possibilities of how this modest document might change the world for people with cognitive disabilities.

Do one thing.

Help us change the world.

We are The Arc.

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Catching Up With Micah Feldman, Intern and Advocate

/in /by The Arc

Micah Feldman is a young man “going places.” Just to give you a sense of how involved Micah is with fulfilling his goals of being an independent young man, taking advantage of every opportunity in his path – it took us at The Arc several weeks to coordinate a time to talk to prepare this blog post. Between Micah’s commitments as an intern at the U.S. Department of Health and Human Services (HHS), speaking engagements at various conferences, and personal events (like his sister’s recent graduation weekend), Micah is not sitting still this summer!

Tell us about how you landed your internship at HHS this summer.

I heard about the AAPD internship program from my mom and thought it sounded like a good experience. I applied once before, but wasn’t picked. So I tried again and this summer I’m one of 30 or so people interning in Washington. I wanted to work at HHS because I met Sharon Lewis at a conference and we became friends.

What is a typical day like at HHS?

Well, every day is different. But I have spent time doing research on guardianship and voting rights. I learn about the health care law. I now know that getting a physical regularly is covered. I’ve also supported the CRPD (U.N. Convention on the Rights of Persons with Disabilities). It needs to get passed.

Why is the CRPD important to you?

It will help people travel more outside the country and have a voice at the table. It’s important for us to support it.

Let’s talk about the good and the bad of your summer in Washington experience.

The best part was going to the ADA celebration at the White House. Tom Perez, the Secretary of Labor, spoke. He’s done a lot for people with disabilities. President Obama was not there because he’s a busy guy.

The worst part is by the end of the day, I’m tired of sitting in front of a computer screen.

What else have you been doing, besides working, here in Washington?

I went to a Nationals baseball game, which was a lot of fun. I saw the FDR Memorial. And soon I’m going to the Newseum with AAPD.

What’s next for you?

I will go home to Michigan for a few days of rest. Then I go back to Syracuse University, where I’m getting my certificate in disability studies. I’m a teaching assistant too. And I will continue to look for speaking opportunities.

This summer, I learned a lot and met lots of people. Maybe in the future, I will work here.

We at The Arc wouldn’t be surprised to see Micah again in Washington, working full time or as a self-advocate for important issues like the CRPD. Thanks for sharing your experience with us, Micah!

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What Does Your Family Need?

/in /by Ann Cameron Williams

Families 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.

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Shining a Light on Violence Against People With Disabilities

/in /by Leigh Ann Davis

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.

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My Definition of Autism

/in /by The Arc

April 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.

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.

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

/in /by The Arc

By 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?

In 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, DC 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.

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My Brother, My Role Model

/in /by The Arc

By 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.

Despite 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, DC this summer 2013 Paul Marchand intern.

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Autism Is “The Matrix”

/in /by The Arc

April 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, Kentucky and pursuing a career in the human services field. Below is her personal definition of autism. Follow the conversation this month online using #autismaware.

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.