Why My Late Autism Diagnosis Was Better Than the Alternative

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I am a child of the 1980s. I watched the first season of Nickelodeon. I ate Kraft cheese and Oscar Meyer b-o-l-o-g-n-a on Wonder Bread sandwiches every day. I saw every Molly Ringwald movie. I saw New Kids on the Block when they were still opening for Tiffany. I was an innocent girl who suddenly walked into third grade and found she no longer had any friends because that’s the year the great divide between popular kids and the ones who got bullied appeared.

My mother always said “just ignore it.” But I couldn’t get her to tell me how. Apparently, I reacted differently than the other kids. So it was even more fun to taunt me. My mother got to the point where if I wanted to stay home from school, I had to be willing to call the doctor myself to make an appointment.

I would say inappropriate things or have inappropriate facial expressions. I would freak out at sounds and smells and touch that others took in stride; in fact, my “temper tantrums” have been referred to as “legendary.” I never got subtle humor, so there were misunderstandings aplenty. Friends were rarely better than acquaintances. As I got older, I couldn’t keep a boyfriend longer than three months.

I was smart. I was in the gifted and talented program from elementary school through high school. In ninth grade, I gave a speech before governors on Earth Day. I was a finalist in a national high school mathematics competition. I graduated with a bachelor’s degree from a Big Ten university in three years with honors. I interned at National Geographic magazine. I was the woman for whom there were no rhetorical questions. I could figure anything out. But I couldn’t figure out how to get along with people.

The year I turned 25, my parents wanted me to move back home to the Midwest, but to me that was defeat. So I picked up and moved from one coast to the other to get away and “figure out” the solution to this problem, too. I had enough saved to last about three months, which was plenty of time to figure this out, right? Nope. Then, it got worse. The diagnosis turned into major depressive disorder. I couldn’t work. I went on disability. I only left my tiny one-room apartment to go to the grocery store or the doctor.

It wasn’t until my 20s were nearly behind me and I saw a Time magazine article about a little boy with autism that I finally figured it out. I showed it to my psychologist, and after a year-long battle to get it covered by insurance, I had an appointment to be evaluated.

January 7, 2016 marked 4,500 days since my autism diagnosis. I keep track in recognition of the day my life began again. I could finally understand why I couldn’t understand. I got services from the local regional autism center. I slowly transitioned back into the world. Now I’m married, and we own a home in a quiet suburb of Los Angeles. I work from home so I don’t have to remember to use the right facial expressions or deal with the cacophony of a cubicle farm. Every day, I work remotely with technology teams from Texas to India who take my ideas and bring them to life for a major corporation. I am the official “autism champion” for my global company in Southern California. I volunteer with a local charity to help my compatriots struggling to find their place in the world. I teach law enforcement about sensory issues to aid in dealing with those in crisis.

I am an adult with autism. I am autistic. No matter how you say it, my life is better with the diagnosis.

The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. 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 Submit a Story page for more about our submission guidelines.

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To the TSA Agent Who Took My Son With Autism and Me Aside

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Dear TSA Agent,

I am sure you screen hundreds of people every day, and you probably don’t remember me or my family — but I remember you. I remember people who make me cry.

boys hugging at Disney World.
Kelly’s sons at Disney World.

It was my family’s first vacation together and my children’s first time on a plane. At the time, they were 7 and 9 years old, and we were very excitedly heading to Disney World.  My youngest has autism and is nonverbal, so I prepped for this trip for months. I read blogs and websites about preparing a child with autism for travel, preparing for the crowds at Disney and for the first time on an airplane. I called the airline and talked to an agent. She was patient enough, asking if I would prefer to be seated first or last. I requested as close to takeoff as possible so it would mean less time on the plane. She put a note on our itinerary so the expectation would be set with the associates at the airport.

The day before, I was able to check everyone in but myself. My ticket required that I stop by the ticket counter to check in. When I arrived, the agent explained that because of my special request, my ticket had been flagged. I don’t fly very often, but I’m pretty sure it’s not good to have your airline ticket flagged. The pit in my stomach worsened.

We walked to security, where you sat, a smile spread across your face. You greeted us warmly and asked for our tickets. I had everything: birth certificates, a marriage certificate and a doctor’s note explaining Patrick’s diagnosis. You simply asked for our tickets and our driver’s licenses. You studied them and stopped on mine, then looked at both children. “Which one has autism?” you asked. A sense of dread came over me. I quietly pointed to the redhead clinging to my leg.

You smiled and bent down, trying to catch Patrick’s eye. “Is he verbal?” I squeaked out a “no.” You said “hi” to him and smiled again, and I felt his grasp loosen a bit. Then you turned your attention to Patrick’s older brother. You smiled at him and introduced yourself to him. He smiled back and told you his name was Brady. Then he barraged you with the excitement he was bursting with over his first time flying. You listened as he prattled on, your grey head nodding in acknowledgement. Then you turned your attention to us, and I steeled myself for your judgment, your questions.

“I just want to say God bless you,” you started. I was dumbfounded, unable to determine where the conversation was headed. “I have a grandson that is autistic.” You continued, telling us how you had taken your grandchildren to Disney World the year before. You talked fondly about your grandson with autism: “He was the best behaved, most appreciative and the most excited. I’m sure Patrick will have a wonderful time.”

My husband joked about Brady’s affinity for talking, and you both laughed. I found it hard to do anything but try to work around the lump in my throat. You patted Patrick on his head. “You know, he doesn’t have to be able to talk to tell you what good parents you are.” I smiled my appreciation, and you thanked us and wished us safe travels. The next person in line moved up to your counter and you greeted them just as warmly.

That interaction might not have lasted in your memory, but it certainly did in mine. Your words helped calm my apprehension and reminded me that my husband and I have a different experience than most, and there are people who recognize and appreciate that. I stopped to wipe my tears away and collected myself, ready to move forward.

boys sitting in chairs

A version of this post first appeared on Quad City Moms Blog.

The Mighty is asking the following: Share a travel moment related to disability, disease or mental illness that made you laugh, cry, roll your eyes or was otherwise unforgettable? 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 Submit a Story page for more about our submission guidelines.

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Apple Store Employee's Moment of Compassion for Boy With Autism Goes Viral

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One Apple employee’s kind deed has earned him praise all over the internet.

LynnMarie Rink and her son James were at the Apple Store in Green Hills, Tennessee, on Thursday, Jan. 21, buying a new iPad. James, 9, has autism and Down syndrome, and the iPad helps him communicate.

All of a sudden, something caught James’s attention outside the store and he tried to run outside but ran straight into a clear glass wall instead. He hit his head on the glass and then again on the floor when he fell, according to LynnMarie Rink’s Facebook post. Everyone in the store witnessed James’s fall.

That’s when Apple employee Andrew Wall came over and asked what he could do to help. He joined Rink and James on the floor where he proceeded to set up the boy’s new iPad.

Rink posted a message of gratitude on Facebook, along with a picture she took of Wall and James together.

And then this happened….Nashville Folks – can you help me find this guy on FB? Or do you know any big-wigs at Apple… Posted by LynnMarie on Friday, January 22, 2016
  “There are no words to accurately describe how grateful I am that he took the time to ‘meet us right where we were,’” Rink wrote in her Facebook post. “He didn’t have to sit down on the floor with us. He could have easily waited for us to stand. [He] could have easily waited for us to come back another day. But he hung out with us in the midst of our pain… That moment reminded me that there are good people in this world and that there will always be people to care for James.” Rink was eventually able to connect with Wall via Facebook and she says Wall told her he hopes to pursue a career in youth counseling some day.

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The Word That’s Important to Focus on as a Special Needs Parent

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When you have a child with special needs, you might hear these words: limitations, impairments, disabilities, delays or challenges. And in the beginning you might think, What does this mean for my child? What does the future hold? While it may be easier to to frame your child’s potential within these limitations provided by doctors or schools, I believe it’s better to focus on one word: potential.

Potential means possibilities. Potential means progress. Potential means we as parents can believe in our child more than anyone else. Potential means opportunities to succeed, to make goals and help our child take steps to reach them. Here are four reasons why goal setting is essential for any child with special needs:

1. Goals are individual and personal, not for comparing.

Whenever I hear the word “individual,” I think of IEPs: Individualized Education Plans. The thing I love about IEPs is that they are made just for my child and no on else’s. They’re not comparing my child’s progress to any other child’s. And that’s just what goals should be: individualized.

There was a meeting about five years ago where I requested that a goal be added to my daughter’s IEP (one involving a life skill). One person was astounded we would even consider this goal and explained that many children in school do well despite not reaching it. She said that the school district could not promise success but could help her do some small tasks in the school setting.

I didn’t settle for that answer — I didn’t want to compare her to any other child, because as her parent, I know her better than anyone. I found a new way for her to reach this life skill. She learned it in our home with a trained professional in just three sessions.

Don’t be afraid to dream the outside the so-called boundaries for your child — he just might achieve it.

2. You will never know until you try.

When I was a younger mom, I got trapped in the mindset that Julianna, my daughter on the autism spectrum, just wouldn’t be able to do certain things. One day my husband decided it was time to teach our two older kids to ride bikes.

“You don’t mean Julianna, right? How is she going to learn?” I asked him.

“We have to try!” he replied.

So we spend the entire winter break that year in a parking lot. Our middle child, Blake, who was 6 at the time, caught on right away. Julianna, our 9-year-old, was struggling. But my husband didn’t give up. Day by day, she made more progress. It was like a miracle unfolding before our eyes. By the end of the break, she was riding independently. To me, she achieved what I before thought was impossible.

I believe in trying, and it doesn’t even have to end in success. Either way, you will learn something valuable about your child.

3. Every child can progress in some way.

As a younger mom, I also felt overwhelmed by the many therapies my daughter was involved in. Most times it seemed like she wasn’t making any progress at all because I couldn’t see results. If I could go back, I would have kept at some of these therapies longer. Progress is hard to measure at times. Looking back now, I can see how the different therapies we did stick to have helped her. She learned to walk through physical therapy. She has improved her speech through speech therapy. She learned fine motor skills and self-regulation skills through occupational therapy. She’s learned and is still learning life and social skills through ABA therapy.

I am amazed at how far she has come, and how much my perception of her potential has evolved. Limitations cannot rob any child of potential. Progress is happening, even when you can’t see it.

4. You will have more purpose as a parent, and your child will have more self-worth.

Parents are hard-wired to relish in the milestones of their children. We love high-fives, sticker charts, giving awards and certificates. Seeing our child accomplish a new skill is rewarding and often worth celebrating. And guess what? It’s just as rewarding for our children. I believe they love the high-fives, hugs, and pats on the back even more.

Last summer, we made a goal for Julianna to stop a troubling behavior, something she had done for years. We reached out to a child psychologist for help and adopted a method to help her reach this goal. It took many weeks of trial and error, but in the end, she achieved it. The psychologist knew this was a big milestone for her, so she invited the whole family to her home to have a party for Julianna. We had a cake and small gifts, and she was given a fancy certificate. This moment gave my daughter confidence and self-worth, and it gave me a memory to cherish forever as a parent.

As parents, we are walking down the path beside our child. We might wish we could walk the path for them, be in their shoes, but we can’t. It’s their path, and we are the guides. We can’t force progress, but we can foster it. We can’t create success, but we can channel it. We can help them find the right path to take.

Two roads diverged in a wood, and I —

I took the one less traveled by,

And that has made all the difference.

— From “The Road Not Taken,” by Robert Frost

As special needs parents, we have to be open to “the road not taken.” The “road less traveled” might be a little more lonely, but I can promise you, you will make new friends along the way. It really will make all the difference. Never cease to dream about what your child can do. What is your child’s destination? How will you help him get there?

Follow this journey on The Special Reds.

Lead photo source: Thinkstock Images

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When Friends With Disabilities Make Disparaging Remarks About Others With Disabilities

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Throughout my educational career as a person with autism, I have been in several different programs with people of varying levels of ability. Having this experience, and a mother who worked in the disability field who explained how things worked, taught me to embrace my differences while simultaneously encouraging others to do the same.

Unfortunately, not all young adults with disabilities have that mentality. I know people who have an “I’m disabled, but I’m not like them” mentality towards people with more “significant” disabilities, or see themselves as being “less impaired.” For example, when I went to the movies with my family and a friend who has Asperger’s syndrome for my birthday, a van from a group home and some young adults were outside. One of the youths greeted my friend with “Hi, honey!” My friend shook his head and said “Lots of obnoxious kids out here.” Of course this comment hurt me deeply, but I didn’t know how to properly call him out on his hurtful remark.

God bless my mother — she simply stated, “Sometimes the best reaction is no reaction at all.” And then there are acquaintances and peers of mine also on the autism spectrum who casually drop the R-bomb or use the term “special needs” in a condescending manner when referring to someone with perceived lower intelligence. It’s like, even in the world of disabilities, there is a level where people who are more impaired are lumped into a category of inferiority.

This casual ableism is petty and hypocritical. Regardless of our level of functioning, we are all the same at the end of the day — and not just because people with so-called “higher functioning” disabilities also struggle with being perceived as “different,” just like people with more significant difficulties. We are all human. People without disabilities still to this day are struggling to grasp this concept. We do not need this internalized ableism. Not everyone is not going to feel the same about their disability. Some people (like me) enjoy talking about their disability and viewpoint of life through that lens, while others dislike the anxiety component of autism or disability or are uncomfortable talking about it. That’s OK.

But it is never, ever OK to demean others. That’s not cool.

Spread the Word to End the Word! You can head here to pledge to stop using the R-word. It’s a step toward creating more accepting attitudes and communities for all people.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? 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 Submit a Story page for more about our submission guidelines.

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A Mom’s Response to That New Yorker Article About Autism

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The following passage is from an article recently published by The New Yorker:

For parents of autistic kids, awareness is desperately important. It’s a searing experience to have a child who doesn’t talk, who doesn’t want to be touched, who self-harms, who demands a regularity and an order that parents can’t supply, whose eyes are not windows to their souls but black mirrors.”

Many throughout the autism community have been offended by the complete insensitivity and demeaning nature behind a statement that equates the eyes of autistics to black mirrors.

What a heartbreaking reality we are faced with when we live in a society that is still so quick to further perpetuate such negative stereotypes associated with individuals with autism. That they are some how less than. Vacant and devoid of the ability to experience rich thoughts and emotions…

Soulless?

When my son, Leo, was born, and he was placed into my arms, the very first thing I noticed were his eyes. I stared into those big, expressive eyes in wonderment — blue at the time, they have since turned to a beautiful shade of green. And each time I look into those eyes, I see his soul — and everything that is precious and unique about my sweet boy.

Leo may have limited speech. He may have trouble communicating and expressing himself in the way we as neurotypicals are accustomed to and expect. And Leo does have autism — but his eyes are not black mirrors.

They are a gift I marvel at each time I peer into them.

Ellie's son Leo

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, 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 Submit a Story page for more about our submission guidelines.

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