Like many others who are autistic, I live in a world that is separate from everyone else’s, deep inside my own head. It’s a world that is hard for others to understand, including our parents, family and friends. For our loved ones, our diagnosis can be a whirlwind of misunderstandings, a lack of answers and not quite knowing how to communicate effectively with us.

The mantra that “if you’ve met one person with autism, you’ve met one person with autism” is absolutely true, and I don’t mean to speak for everyone. However, under the autism spectrum disorder umbrella, many experience the same triad of impairments — difficulty with social interaction, social communication and social imagination. In other words, we are lacking some or all of the social abilities that are considered “normal” or neurotypical. Some of us may not communicate at all. Some of us communicate rarely or in “strange” ways. Some of us can communicate effectively with words, but not through body language or social cues. Some of us attempt to communicate often but are also misunderstood often.

I wasn’t diagnosed with autism until I was 22, so I can share my insights with you. Until my diagnosis in adulthood, I never realized many of my own behaviors. Only after reading the stories and struggles of others with autism (and their loved ones) have I truly been able to understand how I’ve been interacting with others my entire life. I’d like to share the misunderstandings I’ve had between my own friends and family members. I’d like to share them with The Mighty community because even though I am just one person with autism, I’m sure I’m not alone in feeling this way.

I’d like to bridge the gap between what my actions were, what I meant by my actions and how you interpreted my actions. For all the times I may have unintentionally hurt your feelings with my social downfalls.

For all the times you gave me a heartfelt hug, and I stood there awkwardly, not knowing how to express my love in the same way. For all the times you wanted to comfort me with a pat on the back or by holding my hand, but I shied away. For all the times I made you worry when I wasn’t doing well mentally, but I couldn’t find the words to tell you why or how to help me. I didn’t know how to say that I just needed to be alone, against your instinct to protect me.

For all the times you wanted to be comforted, but I couldn’t be there for you in the way you needed. I didn’t know a hug, a kiss, or a back rub would’ve made you feel better instantly. For all the times you wanted to have a conversation with me, but I couldn’t make eye contact with you, or I seemed uninterested. It’s hard for me to reciprocate your social cues. For all the times it would have made your day to hear an “I love you,” but I didn’t think to say it.

For all the Christmases and birthdays I neglected to get you a meaningful gift — I wish I could have done more, but I never wanted to disappoint you with something less than what you deserve. For all the times you could never go near my hair, or my toenails or my ears in order to groom me as a child. For all the phone calls you made because I was too scared to talk over the phone — it’s even scarier to predict the outcome of a phone conversation than one in real life.

For all the times I made you go into the supermarket alone, or I refused to stand in line, or I refused to walk into the gut of a crowd with you. The bright lights, numerous and varying conversations, and the claustrophobic atmosphere was too much to bear. For all the times I didn’t eat the food you made — if it was a different texture, I’m sure I would have loved it.

For all the times I neglected to respond to your calls/texts/emails for days or even weeks. I wanted to make sure I could focus all my attention on you. For all the times I didn’t take your movie/music/book/TV show suggestions. I know I’ll absolutely love it, but having too many interests gives me anxiety. For all the times I was too honest about my opinion and I hurt your feelings.

While I live in a world that is often disconnected from the world of my friends and family, we’re really not so different. I simply am not equipped with the instincts and innate skills to communicate with you like you are able to communicate with others. I love you just the same.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental 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.

Lead photo source: Thinkstock Images


Presidential candidate Hillary Clinton unveiled her new wide-ranging autism initiative on Tuesday, January 5, on the campaign trail in Iowa, the Associated Press reported.

Her plan focuses on research, treatment, insurance coverage, education and employment for those affected by autism.

Some of the components include conducting a nationwide early screening outreach campaign, pushing states to require health insurance coverage for autism services (in private insurance plans as well as marketplace plans offered in the state), launching an initiative to increase employment opportunities and conducting more research into identifying and understanding autism, as well as how to better support adults on the spectrum, according to her website.

“Too many American families are staying up at night worrying about their family members, especially children, who are living with autism. There is more we can do,” Clinton said in a statement, Politico reported.

This newest initiative from the Clinton campaign comes on the heels of a December Alzheimer’s plan in which she proposed doubling spending on Alzheimer’s research, the New York Times reported. 

For more specifics on Clinton’s autism plan, go here

Related: Hillary Clinton Responds to Mom’s Concern Over Son’s Mental Illness Treatment

Many, but not all, children learn they are autistic at a young age. Women with autism might especially have a tendency to go undiagnosed until their later years, sometimes reaching into their 60s. Some never get their diagnosis. Experts in the field believe this could be because of the way women are socialized in society — from the way we communicate to the things that interest us. Poor diagnostic tools and criteria might also be to blame. While it is less common, there are stories of men who are left undiagnosed until adulthood as well.

I’m one of many people who didn’t receive their diagnosis until adulthood. For me, my diagnosis came at the age of 22, at an extremely difficult time in my life. Since receiving my diagnosis, I’ve been met with a lot of reactions — mostly that I seem too well-adjusted to have anything “wrong” with me. I’ve even encountered this type of attitude on my college campus when I met with a disabilities counselor about accommodations. Someone trained to help people like me could not comprehend the person sitting in front of her. I’ve perfected my outward persona to such an extent that some of my own friends and family members can’t believe I have a life-altering disability.

Now, there’s a huge difference between these individuals being genuinely surprised and these individuals doubting you. Genuine surprise comes out of a lack of understanding and exposure to autism spectrum disorders. Doubt is an unwarranted, unneeded and unhealthy judgment of your character. 

Statistically, one in 45 children in the United States has autism, and diagnostic tools are becoming more accurate. When information is more readily available, the percentage of people worldwide will likely go up. According to the CDC, there is one diagnosed female with autism for every five males diagnosed. Experts speculate that the real ratio could be higher. Many undiagnosed individuals could be “high-functioning” and living life without answers because they’ve never been identified for testing.

Whether you’ve recently been diagnosed, you highly suspect you might be autistic or you are self-diagnosed, you are the only person who can judge your diagnosis. You are the only one who cried tears of relief upon reading your first article about high-functioning autism and the late diagnosis phenomenon. You are the only one who may have had to go through your own mental hell, not knowing exactly what was going on, but knowing in your heart that you needed help to combat your intense emotional distress. You’re the only one who had to deal with misdiagnoses of mental health disorders, medications that never worked for you and even trips to psych wards. You are the only one who took dozens of online tests, read all of the books and blogs, listened to all of the interviews and just knew it couldn’t be anything else.

You are the only one who had to guess the reason why you couldn’t connect to people, why you seemed to be pushing them away your entire life, leaving you feeling lonely and numb. You’re the only one who had to guess whether someone was mad at you, happy with you or indifferent because you couldn’t tell the difference. You’re the only one who had to deal with the odd looks and bullying because no one understood your intensely specialized topic of interest. You’re the only one who had to dissect your entire life in front of a doctor, year by year, misfortune after misfortune, and could only hope that you’d leave the diagnostic interview with an answer. You are the only one who truly has experienced the world the way you have.

You should never have to defend yourself because you weren’t diagnosed at a more “appropriate” age, in the eyes of your skeptics. You shouldn’t have to be punished for studying and practicing your social skills so well that you passed for “normal” for so many years. You shouldn’t have to be punished for trying to appear well-adjusted when you were really close to falling apart. You should never have to defend every aspect of your being to someone who has already decided that they don’t believe your diagnosis. You shouldn’t have to learn how to live with your diagnosis while people are doubting whether or not it’s real.

You are amazing, strong and resilient. You are autistic and had no clue for years, but you still managed to push through life without much help or appropriate accommodations. You never gave up on finding an answer. Now that you finally have one, you can live a much more successful and fulfilling life. Now you can show your skeptics just how amazing you are — autism and all.

A photo of Taylor
A photo of Taylor

In May, I cried tears of joy when my diplomas came in the mail from the University of Florida. I cried not because I was relieved to leave undergrad behind, but because I won an important victory of not becoming a statistic. I made it, and the proof was in my hands and now hangs framed on my walls.

I have high-functioning autism. I was diagnosed at age 3. When my parents got my diagnosis in 1997, they were told I would be lucky if I had one friend, made it through high school and took the test for my driver’s license. Some people on the spectrum do not go to college, or are unemployed, or do go and may not succeed. I was one of the ones who thrived.

I stand tall and proud when I say I have a Bachelor’s of Arts and a Bachelor’s of Science from the University of Florida, and I stand a little taller when I say I finished in three years opposed to the usual four.

It wasn’t easy, if I can tell you so. I did not follow the yellow brick road to get there; I was met with doubt every step of the way. I was told not to go to a larger university, I was told not to jump in head first into academics and get my feet wet first and I was told that it’s OK if it’s too overwhelming. Needless to say, I didn’t take no for an answer. I would not be held back because I am autistic, but rather, I would work harder and become more resilient to be afforded the same opportunities as anybody else.

For the three years I was an undergraduate at the University of Florida, I lived on campus for two of them, I had a roommate for one semester, I graduated with honors, I took on every academic challenge I could with two majors, and well, I wrote and had a book published. I also accommodated my own unique challenges as best as I could — I scheduled my life in the details. I knew if I couldn’t handle the squeaking of player’s shoes at a Gators basketball game. I knew what my social limits were, and I knew how to work my way around dining options as someone with limited food preferences. I learned how to make college a triumph with my own rules and expectations.

College taught me a lot about how the world doesn’t always accommodate differences, and sometimes, it’s up to me to fix that and alter the world just a little to make the people around me a bit more accepting or accommodating. In fact, during my undergrad years, I learned so much about survival, adaptation and being a student on the autism spectrum that I was able to pass on all of my advice to the next generation in my book, “A Freshman Survival Guide for College Students With Autism Spectrum Disorders.”

It was in college, through a diversity retreat, that I learned precisely what it means to believe in social justice and to be an advocate beyond the autism and disability communities — to be an advocate to everyone outside of getting accommodations or inside the bubble of disability. I learned that one voice can truly make a difference. I learned that my voice was one my campus needed. I wrote op-eds for the student newspaper, I was a guest speaker to education and disability studies courses and I continued writing. I was letting my voice be heard all over the place. I graduated from the University of Florida and still get emails that the advocacy work I began is continuing without me, that the next crop of Gators is keeping the legacy alive. For a young woman who had the odds of graduation stacked against her, I was able to do more than survive — I made an impact.

I am in law school at the University of Miami now. I am watching myself do a lot of the same things that worked for me, in a new city, but closer to home. I am watching myself plan my schedules, find time to do what I would like, work around dining options and also be an adult with an apartment. Maybe the statistics are still not in my favor. However, the outside doubt and the internal doubt is much smaller than when I left for college. I’ve done it before; who is stopping me from thriving once again?

A version of this post originally appeared on The Huffington Post.

Lead photo source: Thinkstock Images

Dear Mrs. Clinton,

As I anticipate the release of your plan, I’m feeling cautious optimism. I think it’s wonderful that you’re the first candidate to speak on a subject important to so many families. Our community is in dire need of a genuine and openminded champion. I do hope, however, your speech won’t be pretty words with plans to throw federal money at small vouchers and research a “cure.” I hate to be cynical, but autism tends to become important during election years, and enthusiasm wanes once presidents reach the Oval Office.

People with autism spectrum disorder (ASD) are diverse and have complicated needs and goals. I know I’m but one person and cannot speak for our broad community, but I feel a need to weigh in on this conversation.

Depending on whom you ask, the autism community wants a variety of changes. Some of us wish to be “left alone” without the burden of “fitting in.” Others want more supports to adjust to the broader society. Ask 12 of us, and I can guarantee you 12 different answers.

I will start with myself and mention some of the needs I see in our community, both as a person who has ASD and a person professionally involved with ASD.

Me and my daughter
Me and my daughter

First of all, I believe we need access to quality services, education, therapies and technologies, and we need them from a young age, not when our state decides we’ve reached the top of a 10-year Medicaid waiver list. Many families languish on these lists, only to realize the services are not covered. In many states, the Free Appropriate Public Education laws are, in my opinion, a joke. It can take a full year to “prove” to your public school system that your child has autism, let alone access services the school won’t want to pay for.

And there’s so much that isn’t being done with technology. I believe nonverbal children must all be ensured communication devices. Sensorial soothing blankets, chairs and balls must be commonplace in school classrooms.

And finally, we come to a big stumbling block: the need to examine autism after childhood. Adults in our community want to live meaningful, productive lives, but many are blocked at every turn. We need evolving community centers where adults with autism can do meaningful work. We need supported employment that pays real wages and challenges employees to better themselves. We need laws changed to encourage hiring equity.

I want to tell you a humiliating personal story about myself to show you the full extent of the glass ceiling to employment in the ASD community. I’m an adult who was undiagnosed until she was 17 years old. I fought my way through a Master’s degree in Social Work while working in restaurants. I then worked for a year and a half as a social worker before finding myself out of work in 2008, due to the recession. I applied to work at several restaurants and then a CVS, and was found, despite my experience, to be unqualified. I struggled with the personality tests these places required applicants to take, tests that cater to a neurotypical brain. My brain works differently, and I was always ruled out. I was unemployed until a part-time job that did not test became available.

I truly do appreciate what you’re trying to create, but please do not leave “us” out of your discussions or your planning. Talking to one family, self-advocate or group of advisors is not enough. Please go into our community and see our hopes, needs and goals. Please put several people with ASD — male and female, all levels of “functioning,” verbal and nonverbal — on your advisory panel if you reach the White House. Ask the guardians of older adults what kind of assistance they need to care for their loved ones. If you have any interest at all, I would be honored to be part of such a group. Just include us, many of us!  

Good luck with your campaign, and please follow through on being a community champion.

Yours Sincerely,

Wendy Katz

Ever since I was a kid, I’ve always wanted to help people. I’d be the first one to get the newspaper for my dad to make a fire.  I donated every cent I had in my pocket to people ringing bells outside grocery stores for charities. (One year, I even stood ringing the bells, myself!)  And whenever somebody misplaced something, I was the first person to start looking for it.  Whatever I could do to make a difference, I would do it.

When I was 15, I was diagnosed with Asperger’s Syndrome. This form of autism can be hard for me some days. And during those difficult days, it’s OK for me to accept help from others. I may need an extra hand with keeping my room clean. Sometimes I need help at school or work because of communication issues. I can’t drive myself to many places on my own, and I must rely on my friends and family to help me travel long distances.

But none of this has changed my desire to help people myself.

I have made bracelets out of duct tape, and sold them to raise money for others with autism. I raised enough money one year to purchase an iPad with a protective case for a class of kids on the autism spectrum. Another year, I raised enough money to provide a scholarship for a child to attend an autism program.

I have also volunteered in various places for many years. In the past, I have volunteered finding books that people place holds on at my library. At my local chapter of The Arc, I helped in a class of 2-year-olds with autism. Currently, I help at Easter Seals making picture icons for kids who are nonverbal to communicate with. I also volunteer at my favorite museum, The Franklin Institute Science Museum, for their Sensory-Friendly Sundays.

I may be on the autism spectrum. And I may need help from others once in a while. But I love to help people myself, too. It just goes to show that even though some people might be different, they can still make a difference in the lives of others.


Erin donating an iPad to a class of kids on the autism spectrum

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]
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