autistic adult

I am a so-called “high-functioning” autistic person. I have been diagnosed with Asperger’s syndrome (AS).

What exactly does it mean to be a “high-functioning” autistic person? I’m 28 years old, and to this day, I don’t know the answer to that question.

Does it mean to function better in your everyday life than your “traditionally autistic” peers?

Does it mean you are a genius who will change the world (Albert Einstein and Alan Turing are among the persons who supposedly had AS)?

Does it mean you can do more than most people with the same diagnosis as yourself?

When I’m at my lowest, my mom tells me I keep outperforming my peers all the time. When she’s not around, I tell this to myself. At first it was just a repetition of what I’d been told. By now, it’s become an instinct.

Deep down, however, I know that at worst it’s a lie. At best, it’s a half truth.

As many people with AS, their friends and their parents know, the capabilities and mental fortitudes of those diagnosed can differ wildly from person to person.

Myself, I think I’m moderately successful compared to my “highly functioning” peers. I have a bachelor’s degree in journalism. At the moment I’m in the first year of another bachelor’s degree, this one in Russian language. Because of circumstances surrounding past internships, and less media jobs, getting a paid job as a journalist has proven to be next to impossible. However, I’ve had a couple of stints as a journalist for student magazines, and in the process I’ve met a lot of interesting persons. I’ve had experiences and conducted interviews I’ll remember for the rest of my life.

I’ve traveled to 22 countries in Europe. I’ve also been to the U.S., South America and Russia. I’ve written two novels, and I dream of finding a publisher willing to publish them.

However, compared to my non-autistic family, the people I grew up with and the people I surround myself with every day, I feel like a failure on almost every level.

I’ve never once held a paid job. I’ve only ever had one girlfriend. I do not have an extensive social circle, and while extremely grateful for the friends I have, I have to work twice as hard as everyone else to maintain them. I have bouts of extreme anxiety and depression, and it seems unlikely I’ll ever be able to get rid of them.

I’ve met people like me, mostly online, who are only too happy to label their condition as a gift. For me, my AS can feel like a burden when it does not give back what it has taken away from me. Intellectually, I know that given my circumstances, none of these can really be considered “failures.”

But unless I can manage to accept me for what I am, or perhaps more importantly, who I am – that is, a person with unique challenges, I know I’m bound to hit a wall in the near future.

RELATED VIDEOS


One of the worst bullying experiences I’ve ever encountered happened almost 10 years ago, but I can still remember it like it was yesterday…

I was in high school and, while in the staircase after recess I was having a conversation with one of my friends about girls. He was telling me about a date he was recently on while I was sharing about wanting to find a relationship of my own one day. It was something I often daydreamed about. It was something I had wanted ever since starting high school.

While continuing our conversation one of my peers overheard our conversation and decided to butt in. She interrupted, and, in a condescending fashion, said I would die alone because I’d never be able to understand other people. That was one of the most gut-wrenching moments of my life. As silence consumed and I blacked out the world for a few minutes, I thought about an incident that had happened just months before, which made this situation even worse.

I had fallen into a trap by one of the popular girls in our high school who had told me she’d like to be my girlfriend. I told her I’d love that and at that moment thought we were in a relationship. Just a few days later, while asking her if she wanted to go on a date, she, in front of her friends, told me she was only kidding about wanting to be in a relationship with me. She laughed in my face while I walked away, fighting
back tears. My heart felt like it was beating out my chest.

I thought about saying something to a teacher but felt too embarrassed by both situations. At the time I thought they would laugh at me, feel sorry for me, pity me, I just didn’t know. I thought I was a loser, and for months after I had considered a life where I would have to embrace that I’d never be in a relationship, never get married, and never have a family of my own. I thought to myself, “Maybe I’ll get into
college and get a great job one day. Life won’t be that bad.”

Going into my senior year though, I was reminded of advice from a family member who said, “You can’t pass the time living your dreams in your sleep. You need to live
those dreams when you are awake.” I wanted to start my final year of high school off on as positive a note as possible. I went into my senior year as the president of our student council, captain of our varsity basketball team and lead in our school play.

The one moment that stood out the most that year though was when a month and a half in I started dating a classmate. I was in my first relationship. I was happy.

Today, even though I’m single as a 28-year-old adult on the autism spectrum, I’ve dated several women and have grown to be more confident in the dating world.

For those reading this I hope your loved ones, regardless of having autism or not, will be able to find someone out who will be there for them. Whether it is a relationship or even just a friendship… find those people who share similar interests to your loved ones, and never give up hope.

Don’t let naysayers or the bullies of the world hold you or your family down. But also remember, some of our loved ones do enjoy being alone at times, and that’s OK too. For those who ever feel alone though or just need a friend, I’m only a message away via my Facebook fan page.

October is National Bullying Prevention Month. Autism Speaks partnered with the National Center for Learning Disabilities, Pacer’s National Bullying Center and Ability Path to start a Special Needs Anti-Bullying Toolkit to help stop bullying. You can learn more about the kit here.

A version of this post appeared at KerryMagro.com.

Image via Thinkstock.


I am one of those people who truly loves Halloween — not the spooky, scary side of the celebration, but costumes… oh yes I love costumes. Give me a reason to dress up, whether it’s halloween or a theme party, and I am 100% committed. When I was a child, I bugged my parents for months leading up to the big day of October 31 by evaluating every possible costume I could potentially dress in that year. By the time the actual date rolled around most of my family was exhausted by my obsession with perfecting just the right attire for the big night.

Like so many parents, I looked forward to sharing these experiences with my own children. When I had my first son, I was elated to be able to dress him up in costume; he was an adorable 4-week-old pirate, a 1-year-old lobster and a 2-year-old Cookie Monster (even if he wouldn’t keep the head on). It wasn’t always easy figuring out how to maneuver a baby into these ridiculous ensembles, but the pictures are treasured, and my love of halloween, costumes, and trick-or-treating remained.   Then my son turned 3, and it all came to a screeching halt. 

While we had been engaged with early intervention and various therapies since my son was 18 months old, it was right around his 3rd birthday that we received the official diagnosis. Our son is on the autism spectrum. Nothing had changed yet, everything had changed. Many of the simple day-to-day ritual or family outings that most people take for granted were already not part of our norm for a variety of reasons, including our child’s sensory issues, meltdowns or challenges in large groups of people. Yet somehow the notion that Halloween would no longer be a cause for fun and celebration was simply not something I had considered.

That Halloween when my son was 3 we just barely got him into a t-shirt that resembled a pirate costume. He had the hat, eye patch and sword in the wagon next to him, but it was enough to feel as though we were a part of the day. Then last year, when he was 4, it became apparent that my grand plans for family-themed costumes and our first opportunity to attend a halloween parade at his pre-school were simply not going to go as planned, or at least not according to my expectations. The parade included every grade of the elementary school from pre-k through third, and it was wonderful. The kids looked great, the parents were out in full force, cameras were flashing at every turn, and the school did a wonderful job. When my son’s class came out I waited with anticipation. I had not been able to convince my son to wear his costume to school but sent a note to his teacher that morning explaining it was in his backpack and that I thought there was a good chance seeing the other kids in his class dressed up would make him want to participate.

As his class entered the parade every single child was in costume… except my son. He was wearing an black Adidas running outfit that was to be the underneath of his costume. I could feel or at least imagined I felt other parents wondering who the poor kid was whose mom forgot about the parade and costume. I could barely choke back tears as I realized yet again how different our experience was compared to other people’s, but I proudly stood by clapping and waving and taking pictures of my little guy.

Needless to say the actual night that followed also did not go according to plan; my themed family costumes of Ghostbusters with our younger son dressed as the Stay Puff Marshmallow Man did not appeal to my older son. We tried again and again to no avail, and by the end of it he was so out of sorts (and so were we) that we never even made it out to trick-or-treat. This was not my finest moment as a parent. I had focused so much time and energy on creating a Halloween experience that would meet every Pinterest expectation that I forgot to focus on what was really going on in the mind and world of my child. He doesn’t like costumes, he doesn’t like to pretend he is anyone other than who he is, he loves imaginary play, but we can’t call him Captain Charlie or Superman because then everything goes downhill. I may not get it, but I can and have certainly learned to accept it.

The following Monday I received several pictures of the school parade via our parent email with countless notes from his teachers, aides and therapists all telling me that due to his sporty retro-sweatsuit combined with his good looks they all decided he was dressed as Ben Affleck from “Good Will Hunting.” I laughed and cried with these notes because it humbled me and made me realize that how we choose to look at a situation and how we choose to celebrate regardless of what is the “expected norm” matters more than what we think should happen.

His teacher told me she was so proud of how my son had walked in the parade, how he stayed with his class and held hands with his two friends the entire time. He didn’t freak out at the number of family members crowding the area or cheering and yelling. He simply stayed with his group and smiled the whole time, and he had fun doing it.  

So here we are in October yet again. Normally I would have started thinking about costumes at least a month ago, but this year I have decided to step back and see what happens. My son told me he wants to be an astronaut, and I think that is great. We will go pick out a costume together, he may or may not wear it and we may or may not make it out to trick-or-treat. If we make it out that night and he is not in costume, I will not worry about what people think or if anyone is annoyed at giving candy to a child who is not dressed up or may not make eye contact. None of it really matters to me any more. The realization that we are creating our own family memories and traditions that may look nothing like what we thought they would but are uniquely special in their own right is all I need.

Image via Thinkstock.


Sending a vulnerable child off to his or her first foray into the larger world without the shelter (OK, constant hovering) of a loving parent nearby can be emotional for any family. I feel especially vulnerable sending a child diagnosed with autism spectrum disorder (ASD) into a new environment where he, and I, will be tested in ways that we have not yet imagined.

I will admit to possessing a lot of baggage on this topic. We lack proximity to an extended family support network, so prior to the start of kindergarten, I could count on my fingers how many times my oldest son had not eaten lunch with me, much less spent the night without me. For the few times a week he had morning preschool, I barely had time to complete the grocery shopping before picking him up again. I was his interpreter, his defense, and, maybe, we were one another’s means of hiding, too. Our normal was never called into question. This was our routine — our small life.

Despite my insecurity about sending him off, pragmatically, my spouse and I made lists of pros and cons. We toured and studied private, charter and public local schools. I brought up homeschooling as an option. School research was our actual hobby for a matter of months. My diligent husband created Excel spreadsheets to calculate our votes with a statistical margin of error. And we came back repeatedly to the answer that our school of choice was the best fit for him, and the best fit for our family. Somehow, as the start date came nearer, that sense of calm ration deserted me.

The early childhood support team we clung to for the past two years changed over to an elementary team fielding a much larger caseload. That first team had walked us through the initial evaluation process and saw me cry in the car before driving away. They watched as we learned to parent: teaching toilet training and enforcing the wearing pants out of doors. The new team may certainly be just as or more proficient at their jobs, but saying goodbye to our trusted support team was challenging.

There was a different aspect of parent presence in preschool. If we arrived 15 minutes late due to an early morning meltdown, no explanation was required. Because our preschool had no busing option, I recognized the students and their caretakers by sight, if not by first name. Asking for patience, and sometimes some leniency, was less of an issue when it impacted one partial-day classroom.

We attended open house to meet the teacher. I took our gaggle of children for trips to practice the school bathrooms and to try out the playground. Nearly a month in advance, we were counting down the days and doing everything possible to make the transition as smooth as possible: countless library books about school, a paper chain countdown, personalized school supplies, a list of acceptable lunch options. We let him plan his entire first day of meals and snacks, and there were not nearly enough vegetables. 

On the first day, I was numb with fear, excitement and pride. Walking away from him was one of the hardest moments of my life. We made it through those first few days where he and I came home yelling and crying and trying so desperately hard to adjust. He didn’t eat, drink or use the bathroom. I didn’t sleep. I read up on the rules and manuals; he played Legos in isolation. We gave ourselves more time, and I wrote a lot of emails. I nodded and put on a brave face.

I am starting to know his new support team on a first-name basis. He has moments where he is overcome with excitement about his new library card or he found the sticker I put in his lunch box. One day, he came home and spoke about another child by name! Granted, this classmate had sustained a broken arm during recess, but I was so encouraged that he had connected with another person that I enabled the making of a “get well soon” card.

There are glimmers where a new baseline is emerging, where he and I have come to an equilibrium once more, a balance of getting by, and some hard times, and having fun.   

And then today, this came home:

school project about best friends for kindergarten class

My gentle and loving 5-year-old boy wants to complete the picture with a drawing of the stuffed puppy he has slept with since he was 1. I am so scared. I have to trust that the other parents, parents of children I have never met and whose names I do not know, are putting in their work, too. How will these other 5- and 6-year-olds respond to a boy whose best friend is a stuffed animal? Will they see an opportunity to be a friend to him?

Letting go of control and being willing to risk it, to trust my boy to his own limits and to trust others with his heart, is my experience of kindergarten. We can do this together.     


We just got back from my son’s back-to-school night. John is a 15-year-old with autism spectrum disorder, and he is in an all autism out-of-district school. John has been in this type of setting since he was 3 years old, and this is the third and likely final school he will be in.

Every year, back to school night makes me reflect back on the early years, and as my wife is a special education teacher, it makes me think about the exceptional people my son has had in his life.

We were terrified in those early years, my wife and I. Everything was so new, the future so unknown.  Who would he become? How would he get there? Who would help us? Were we doing the right thing? And the most important question of all – were these the right people? These questions can haunt you as an ASD parent, especially at the beginning. Before you develop a sense for who’s right for your child and who’s not. Even if you think you have a bit of instinct to rely on, you’re not sure your instinct is even reliable. You are putting a lot into someone’s hands on nothing more than faith.

We were very lucky in those early years. I would venture to say we didn’t even know how lucky we were until we got to look back on it. John’s first school was a warm and loving environment, a place my wife described as “like walking into a warm hug.” For most of his years there, he was in a classroom with the same teacher and the same assistants. This team of people was nothing short of exceptional. Their level of dedication and love for my child is unmatched to this day. We’re still in touch with his teacher from those early years. She still likes to know how he’s doing. I don’t think her love for him ended when he aged out. You can’t put a price on that.

His second school was a much more formal environment. It was what he needed as he was getting older and a focus on academics became more important. It was hard for us as parents, adjusting to this environment, though he did exceptionally well. There was no more daily communication of
every detail from his day. He had more responsibility than he used to for things like homework. He was being challenged more. He also had the same teacher and aide here for a good long stretch of time. At first we had trepidations, but by the end of those four years, we knew that we had hit the jackpot a second time.  It became clear that this second set of people in his life were as dedicated and
caring as the first set of people.

Around the age of 14, John also outgrew that environment. We had to start looking for other schools, and we heard about one within a decent busing distance. Friends were telling us to see it, and we finally did. After just a few minutes, we could feel that it was the right place for him at this time in his life. And the people — could this be happening a third time? Could we really be finding another place with people of the same caliber as the first two?

We moved him in mid-school-year last year and this year he’s back for the full year. He is joyous
about this place. He’s surrounded by a team full of people who get him, who challenge him and who help him to be a better him. And after back-to-school night, I can honestly say these people have
the same level of dedication and caring as he had the first two times.

I don’t know what we did to be this lucky, to find good people at every turn. To find people who help our son become the best person he can be. I do know, however, that it’s not something you can buy or beg or borrow or steal. It’s a gift from the universe, and I’m eternally thankful for it.


Yesterday, I sat in that haze again. I have kept myself busy. I enjoy the exercise I get in while my children are at school, but I don’t enjoy it nearly as much as I would like to — because I am constantly wondering if my child is safe. I am constantly wondering how I can move her forward and provide her a life that will be fruitful and give her the amazing gifts I hope to provide for all my children.

As I put my little ones to bed last night, I reached out. Though I could have called and polled my friends, there was a part of me that didn’t want to talk about it — but I did want the answers. I have been part of an online mom group for years. I figured they may have some insight, so I shared this post:

I have had wine to be honest, but I swear some days I just wish I knew what Serrie was thinking. I am so grateful for all I have, but there are moments I wish I knew. Is this normal? I wonder because so many of my friends “avoid” talking about Serrie… Why is our society so afraid of special needs? It makes special needs families feel lonely.

I am grateful because within just a few minutes I had responses. One response that surprised me was one noting a bit of discomfort due to being politically correct or fearful of saying something wrong. I am the queen of saying everything wrong, so I guess it never occurred to me when people were quiet, it wasn’t always a slight or a way to distance oneself — sometimes people may not say anything at all because they think they are doing what is best. No matter what they think is best for me (or other parents with a new autism diagnosis), the worst thing I can hear is silence. That lonely feeling I get when I think of what my child is thinking or wanting to say is magnified with friends who are silent. Every time a friend says “I saw her smile,” it lights my life. Every time a friend says “She said xyz to my child,” it gives me hope. And every friend who takes the time to check in or listen as I cry truly touches my heart.

I am fairly certain I am not alone — so today, I am letting you know my take on being my friend as I parent a child who has autism:

1. I am the same mom (and friend) I was before. I am no different from you, and though I have a child with distinct challenges, my challenges are no less or more important than your own; they are just different. I still want to hear about your child. Even though I may wonder about my child meeting similar milestones, I am truly happy for you and the child in your life.

2. I still need you. Perhaps I need you now more than ever. I dreamed, just like you did, about how my child would move through life, and I am now saying goodbye to some of those dreams. I am slowly creating new dreams and new goals, but it’s a process I have never walked before, and I need all the support I can get. Please don’t leave me alone. I need you. One day, I hope to be able to be the one you need once again.

3. My child is still my child. She or he is no more or less than my other kids. I love my child. Completely. I may feel overwhelmed or defeated sometimes, but that does not mean I love my child any less than I did the day before my child’s diagnosis. Please don’t ever ask me to leave my child out. That is the most painful thing you can do.

4. If you don’t know what to say, just be there. When you turn your back, walk away or say nothing, I wonder what I did wrong. I am already struggling; leaving my side can only make me struggle more. Please know your presence is truly appreciated, and though I may not know how to thank you, I am grateful you are near.

5. This road has major ups and downs. You may think I am “over” how the diagnosis has changed our lives. I may be “over” the initial shock, but as I travel this new journey, I will find myself having amazing highs and amazing lows. That may transfer to my daily life and my mood. I am sorry. Bear with me. This is a journey that has no end.

6. If you want to help, help with my other kids. One of our greatest fears is trying to meet the needs of our child with special needs and neglecting the needs of our other children. Though we may not be able to reciprocate immediately, it’s truly appreciated. This summer my kids sat through up to seven therapies a week. Those times they got out of it were truly gifts — not just to them, but to me.

7. If I say I can’t go or a party is too much, trust me: It’s not you. I am learning to understand my child’s unique needs. As I understand them, I will be better prepared to venture out into the world. I will be able to take you up on outings and parties, and I will have your support in those events.

Parenting is not easy. I have had the fastest education as to exactly where we as parents succeed and fail. In the past, I am certain I have not been the friend I should have been when my friends experienced a new diagnosis, but now I have a better understanding as to how. As parents, let’s learn to love our children and each other’s children for who they are without turning our backs — but instead by embracing the unique qualities of each child.

A version of this post originally appeared on Messy Blessy Momma.

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.