To the Person Whose Autism Diagnosis Has Been Met With Skepticism

2k
2k
6

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
2k
2k
6

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

What I Learned as an Autistic College Student

322
322
1

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

322
322
1
TOPICS
JOIN THE CONVERSATION

A Letter to Hillary Clinton About Her Upcoming Autism Plan

1k
1k
11

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

1k
1k
11
JOIN THE CONVERSATION

Being the One Who Helps People and Learning When to Accept Help

366
366
2

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]
/* */ 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.

366
366
2
TOPICS
JOIN THE CONVERSATION

Yes, I Say He’s Autistic (And Other Reasons I’m Not a Popular Autism Mama)

2k
2k
22

My son A-Man is autistic. Notice, I didn’t say that he “has autism” or that he “is a boy who happens to have autism” or even, as some people who are adamant about person-first language would say, “is a boy who likes goldfish crackers, Paw Patrol, playing catch, and happens to have autism.” He is autistic.

Simply saying my son is autistic can make me pretty unpopular with a lot of autism mamas. In fact, I’ve recently learned a lot of my beliefs and views on autism are radically different than the “typical” view autism parents have. When we first received my son’s official diagnosis, I started researching like crazy and talking to as many autistic teens and adults as I could. I wanted to know how they felt, what helped them growing up, what they wish their parents hadn’t done, what they wish they had done. To me, that just makes sense.

If a man wants to help a woman, he would ask that woman what she liked/disliked/needed/didn’t need. He wouldn’t go ask another man who happened to know a woman at one point. To me, it just doesn’t make sense. Of course, that man may have some decent tips, just like some parents of autistic kids have decent tips. But if they are not autistic, they cannot accurately explain how an autistic person feels or thinks.

After all my research and chats with autistic people, I’ve learned a few things parents could be doing that unintentionally hurt their child. Today I’m sharing why I say he’s autistic, and other things that make me an unpopular autism mama.

1. The autistic community prefers identity language.

I’ve written an entire post about why we choose to use identity language when referring to our children, and you can read that here, but for now I’ll give a quick overview. The whole point of demanding people use person-first language is to separate the person from the disability and to remind people that disabled people are real people. (Holy cow, how many times can I put “people” in a sentence?) On the first point, I don’t see a need to separate my child from his disability. It’s a part of what makes him who he is. I say he’s autistic just like I say he’s a boy. I wouldn’t say he “happens to have maleness.” On the second point, I think if you need to check your language to be reminded that anyone is a person, you have bigger issues. Also, working so hard to separate the person from their disability promotes the stigma that disabilities are bad things that “happen” to a person rather than a part of what makes them who they are.

2. We are selective about therapies.

A-Man receives speech therapy to help his expressive language delay so he can more effectively communicate. He receives occupational therapy to help him learn coping mechanisms and regulate his sensory needs. He will soon start receiving physical therapy to help him with his motor skills affected by his dyspraxia. He is not, however, receiving applied behavior analysis (ABA) therapy. Many parents see ABA as the holy grail of autism therapies, but I really don’t see it that way. If you’re unfamiliar, ABA is a therapy designed to change the behaviors exhibited by autistic children so they can more easily fit into society. Essentially, the goal is to help a child learn how to pretend to be neurotypical. (Quick side note: anyone who was offended that I don’t use person-first language probably didn’t have an issue that I didn’t just say “the goal is to help your child learn how to pretend to happen to have neurotypicalism.”) Some forms of ABA use techniques designed to silence autistic people and force them to comply. While there’s a time and a place for ABA, and you can find therapists who practice in respectful ways, it isn’t something that’s right for our family at this time. If we do try ABA in the future, it will be highly regulated and used for specific tasks only. And if one therapist ever tries to tell my child he can’t stim, they’ll have another thing coming!

3. I’m not sad that he’s autistic.

I mentioned before in my letter to a mom who just received her child’s first autism diagnosis that it’s OK to feel however you feel, and it is. Most moms will agree with that. I embrace my son’s autism. It’s a part of what makes him special, just like one child’s giftedness makes him special and another child’s global developmental delay makes him special. Autistic people add another color to our beautiful rainbow of a world, and I would never want to see a world without it. A-Man lights up my life each and every day, so I’m not sad he’s autistic. I’m sad the world may forever treat him differently. I’m sad at the lack of education, acceptance and love for the autistic community. My son and his autism aren’t what’s wrong; society is.

4. I don’t think I’m a superhero.

There’s a common belief out there that all special needs moms are superheroes, that our kids are so incredibly lucky to have families that care for them. Honestly, I think this is a bit ridiculous. When people imply that I’m a “Super Mom” because I simply love my children with disabilities the same way I love my children without, it’s a bit insulting. It implies it’s difficult to love an autistic child, which I assure you, it is not. I’ve loved all my children since the moment they were each born. I love A-Man when he struggles with eye contact. I loved Baby M when he refused to eat solid foods. I love Mr. C when he’s throwing a tantrum. I love Miss S when she’s crying while I’m trying to write a blog post (guess what’s happening right now?). A-Man is no luckier to have me than Miss S is. Baby M is no luckier than Mr. C. I love, fight for and do everything I can for each of my kids. That makes me a mom. Some may even argue that makes me a good mom. But simply treating my special needs kids the same way I treat my kids without disabilities doesn’t make me a Super Mom.

5. I don’t think you or that cheerleader or that celebrity are superheroes.

There are a lot of news stories about people with special needs that drive me absolutely insane. “Cheerleader Takes Autistic Boy to Prom” should not be news. “Cashier is Nice to Girl With Down Syndrome” should not be news. “Girl in Wheelchair Made Homecoming Queen” should not be news. Don’t get me wrong, these stories can be heartwarming, and I read and share plenty of them for that mama who needs a pick-me-up on a rough day, but let’s take a step back and ask why it’s news. If you took the disability out of those headlines, would it still be news? Absolutely not because it isn’t shocking when someone goes to prom, becomes homecoming queen or is nice. It is apparently, however, shocking when people do these completely normal things for people with disabilities. Someone inviting an autistic child to a birthday party shouldn’t be newsworthy; it should be commonplace human decency. I don’t think someone is a hero for simply treating autistic and disabled people like he or she would treat every other person in the world. It doesn’t make that person special; it makes him or her a decent human being.

6. I don’t want your “special needs prom.”

This goes along with my last point, but I really, really do not want my children singled out for events like this. There is a “special needs prom” being held in my area next month, and I really don’t understand. People are trying so hard to “give special needs kids a night to feel beautiful and shine.” Why can’t they do this at their high school prom, like everyone else? Maybe, rather than making a cutesy prom just for disabled kids (which will likely make the parents/volunteers feel like they’re doing something good rather than actually doing the kids much good) we could simply make their actual prom more inclusive? I’ll admit, sometimes having the option of an event designed for autistic kids is helpful. A movie theater in my area puts on sensory-friendly shows which helps kids who can’t tolerate the typical loud noises at a theater. It’s simply an option if that showing will fit their needs better. The prom just keeps kids separated. There’s still loud music and bright lights, so it isn’t making it more accessible to autistic kids (or kids with other sensory issues), so I don’t see any point other than to say they did something nice for the special needs community.

My intention with this is truly not to offend anyone, I’m simply sharing my thoughts. I’m certainly not popular with typical autism mamas, but I’d much rather offend them than my own autistic son. My advice? When in doubt, ask someone who actually has your child’s disability. Don’t blindly trust the experts. One thing an autistic person told me that put it all into perspective is this: “Those experts screaming for person-first language are the same people who used ‘mental retardation’ as a diagnosis.” The disability community is constantly changing and evolving, and as parents, we’re just along for the ride.

Follow this journey on This Outnumbered Mama.

2k
2k
22
TOPICS
JOIN THE CONVERSATION

To the Person on the Autism Spectrum Trying to Speak on My Behalf

2k
2k
28

As someone who is part of the autism community, you have probably already heard the common phrase, “If you’ve met one person with autism, you’ve met one person with autism.” It means that no two people on the spectrum (or off the spectrum!) are exactly the same. It means that another person will not always feel the same way you do about certain situations. It means that each person has a different opinion.

And yet, I am constantly hearing — whether it is in a group or a forum or in person — the word “we” to describe personal experiences with autism. I have come across so many statements:

“We as autistics do not like to be called ‘people with autism.’”

“We feel as though our autism is a part of who we are.”

“We don’t want any therapy for our autistic traits.”

“We hate that autism organization.”

While these statements may hold true for some, they do not hold true for all. And to use the word “we” implies that they do. The use of the word “we” may confuse those who are not familiar with autism, or the differences each person has.

I am tired of coming up right after you and having to correct the statement that all people on the autism spectrum feel that way. I have grown tired of trying to explain to others that I might not feel the same way. I am tired of explaining to people that I really don’t care whether I “have autism” or “am autistic.” Maybe you don’t want any therapies for the social deficits, but I really would like to be able to understand a full conversation with someone without misinterpreting what they say. And perhaps you hate that autism organization. But I don’t. I may dislike certain aspects, but I don’t hate people who are trying to help me. And while I feel that my autism is a part of who I am, that does not mean everyone else does.

I constantly use the disclaimer: I can’t speak for everyone. I can only speak for myself.

I ask you, from one person on the autism spectrum to another, to please stop speaking on my behalf. By all means, please feel free to advocate for yourself. But instead of using the word “we,” just use the word “I.”

2k
2k
28
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.