Rear View of a Boy and a Girl Sitting Side by Side on a Swing

I remember the day I met you four years ago. We were brought together in the name of volunteerism. As we sat in the conference room awaiting our assignment, small talk ensued. The usual niceties were exchanged. The typical “what do you do?” and “how do you know so-in- so?” followed. Conversations soon turned more personal.

You turned to me and asked, “Are you married? Do you have children?”

“Yes, I’m married, and I have three children,” I replied.

“What are their ages?” you asked.

I took a deep breath. This is where this conversation always gets uncomfortable for me. Strangers ask questions that dig a little too deep sometimes. I told you my son was 15 and my daughters were 7 and 5. There are always questions about the gap in age between my son and his sisters. “Why’d you wait so long to have more children? Why would you want such a large gap between them? Didn’t you feel like you were starting over?”

You asked these questions, and I simply replied, “My son is autistic. He was 9 when his first sister was born. That was the time we chose to add another child to our family.”

Your response astonishes me to this day. I expected silence. I expected a change of subject. What I did not expect was this:

“Wait! Let me get this straight. You had an autistic child. You proved you could create a damaged child, then you intentionally had additional children? Why would you tempt fate like that? Has the level of your selfishness ever occurred to you?”

My heart raced. My face burned. Rage poured through me. The chatter around the room stopped, and that silence was deafening as I struggled to process what was just said to me. I somehow found a way to suppress my anger and said:

“Never have I thought of surrounding my oldest child with a sibling’s love as a selfish act. My daughters love their brother. He will always be surrounded by people who love him unconditionally… just as he is. As you have just proven to me, the world can be a harsh, cruel place. Love doesn’t exist in every corner, but it always will exist in every corner of his world because of the love of his family.”

It has been four years since that day, and I still think of you from time to time. My son graduated from high school this year. He was the first in his graduating class to walk across the stage, and there in the stands were his sisters. He has three sisters now. They were all cheering him on that night. The youngest yelled, “That’s my bubba!” when she saw him in his cap and gown. The older girls are approaching their tween years, and they still tell everyone they have the coolest brother ever.

Am I selfish? Nineteen years ago I received love in a tiny package. As time went by, I couldn’t wait to see that love multiply. Today I’m a proud mother of four. Our house bursts with love, and we have plenty to share. The love my children have life spills into our community and shines light where there is darkness. Perhaps one day, it’ll touch your dark corner as well. Today I choose to forgive you for your harsh words and your ignorance. May you be touched by a love like ours one day.

Image via Thinkstock.


Autism moms I am familiar with, as well as myself, are ready to spring into action at any time. We come prepared with food, toys and other supplies as needed. When planning an outing to a new location, I will usually visit the place or event first so I have an idea of what to expect and know exactly where to go. As an autism mom, we are also used to exiting an event sooner than we planned due to escalating behaviors.

This was very much the case as we started out on a cool Sunday afternoon with our family. My 5-year-old son who is on the spectrum has been showing an interest in music. With this interest and others that have surfaced, we have been seeking out non-obtrusive opportunities for him to experience the respective subject.

On this particular afternoon, we were on our way to our first family-friendly drum circle a friend had told me about. We were excited to go and didn’t want to wait an extra month to complete a preliminary research visit. My husband and I agreed we would see what happens and be open to the option of leaving earlier than planned if needed.

As we arrived at the drum circle, a large group had informally assembled. As we entered the area, we went through the process of burning sage (smudging). My son found this fascinating since he always enjoys watching smoke. The group volunteers happily let him explore. In fact, he even played with a drum on the table, which isn’t something he would normally do. The larger group assembled around the bonfire, and we let our son work his way over to the group on his own time. Once closer, he spotted another fascination — fire.

After spotting the fire, he then made it his mission to get inside the circle to be closer to it. Unsure of the drum circle protocol, we did our best to keep him out of the circle. This led to several protests from my son, and after a short time, we decided to head home as the behaviors escalated.

As we were picking up our things, a lady with red hair came over. I don’t remember exactly what she said, but she let us know that it was completely fine to let him go in the middle of the circle. She said, of course, they wanted him to be safe around the fire, but we knew from experience he wouldn’t touch it. This lady among several others asked us to stay.

He entered the large circle undaunted (which was unusual for him) and went straight up to the fire. The woman leading the night was in the center talking. Feeling a bit out of place for the moment, her words floated over me until one sunk in — beautiful. She called my boy, a boy she had never formally met, beautiful.

We stood there for some time. Watching the drummers. Watching the dancers. Watching my son dance, unfiltered, free in front of a crowd of over 100 people. He was in the presence of a group that said stay. He was in the presence of a group that let him be who he was. He was in the presence of a group of people who didn’t know him, but took the time to show love.

I sat on the sidelines speechless and in tears. It’s not hard to notice the stares in the store when my son has his behaviors. For some time, it has been my wish to have my son around people that fully accepted him. Just to see how it would feel.

Wanting to stick to our bedtime for the kids, we had to end the night early. As we left, people came up to us thanking us for bringing our son. This, too, was a first for me. There were times we had faced challenges at the store or the mall, and I wanted someone to tell me it was OK. On this night, people actually did come forward.

That night my son received 100 percent heartfelt acceptance. For the first time in my experience, people didn’t simply claim acceptance, they stood up and took action. For the first time, the stares weren’t due to behavior, but were given with admiration and love. One hundred plus members of this drum circle family have no idea that on a cool evening they were participants of a small miracle.

Follow this journey on Spectrum Lane.

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My name is Alex, and I have autism.

They say my mind is extraordinary, that’s why I stand out. I never said a word until I was 12.

I’m learning how to live in a world where I don’t belong, and I say that because people like me aren’t usually accepted. When I finally did talk, everything else looked fine from the outside. So my biggest problem now is that people forget I’m on the spectrum, so they say and do things I either don’t understand or get stuck on because I can’t figure out what they mean.

I still can’t always look at people when they’re talking to me, but I’ve worked hard to get where I am with eye contact. I still have meltdowns, and I still shut people out, but it doesn’t happen as often as it once did.

I learn in black and white, that’s all I know. I don’t know body language, and I can’t read facial expressions. I also have sensory processing disorder. Most materials that aren’t cotton feel like knives or fire on my skin. I don’t like to pet things, and I don’t like fur.

On a good day, most of the time you wouldn’t be able to tell I am autistic, unless you knew what to look for.

alex with a bunny

I know what I want, I just don’t always know how to say it. I don’t always use my words. There are days where I don’t talk at all, and those are the days where I shut people out.

I graduated high school this year, but I barely made it out alive. I have no confidence or self-esteem. High school never taught me how to love myself or how to fit in.

I’m obsessed with cars. If I know you, I know what you drive. It only takes seeing someone get out of their car one time to know what they drive, and I will remember it… forever. I know most people’s license plate numbers without even trying to. I have to be careful not to look because otherwise I would know every plate on the road.

I want people to know that just because someone may look completely fine, doesn’t mean they are.

So be kind, always.

If you or someone you know needs help, visit our suicide prevention resources page. 

If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255

Here is what my autism looks like…

Selfishness, self-centeredness, self-involvement.

I am an ice king, I move through the world like a young Vulcan moves through a human city, stoic, solid and apparently untouched.

I am the arrogant one, the annoying one, the one most likely to hijack a thread or a conversation and to loop whatever you’re talking about back to me.

I am the reclusive, the introverted, the loner.

I am the third seat bassoonist in the symphony of society, always unsure of the rhythm, eternally out of key. I fade in and out with varying levels of skill, I play my three notes and then retreat to a safe distance, watching, waiting to see if I am going to be accepted or if I have brought the music to a crashing halt and a scolding is imminent.

My lack of rhythm is ironic in that I tick to my own beat, tic-ing in various ways, some so subtle as not to be noted, others so loud that Oppenheimer would wince at my explosions.

I am both creator and destroyer of worlds.

Some of us swim in oceans of art, in seas of words, in colors more vibrant than a Van Gogh hallucination; others wrap ourselves in ourselves. I take my butterflies inside to play.

They say I feel nothing. Frequently I feel too much. I love too hard, I take a conversation into fragments, diagramming and re-diagramming and seeking that one tiny flaw and beating myself with it, long and hard, until days, weeks, months, years later I take out the much battered sentences and show them to the person I spoke the words to and they wonder what I am thinking of. Them. I am thinking of them. And they, well, they think about me, so science says, for about 17 seconds on average.

Or it, I am thinking about it. The “Black Beauty” steam trains of India and the narrow gauge rails that crisscross the country starting in the far north near Nepal, moving south to the sea. I think about the signals and the whistle stops, and the whistle itself, smooth barrel of high pressure sound trapped within it’s tempered tolerances, smooth walls, quiet until the conductor pulls the chain and breaks the pipe, cracks it open. Do you not know about trains? Let me tell you about trains. Steam trains, electric trains, maglev trains, let me tell you again, and again, and eternally…

I do not live in barren white expanses, I decorate the walls of my mind, but I rarely, oh so very rarely, let you in.

And when I do – feel blessed.

This is what my autism is.

Sensorum in flood tides. Information in Force 12 winds.

I hear your words. Oh, yes, I hear them. And the squeak of your chair, and the rustle of your shirt, and the man chewing at table two, and the woman farting at table 10, and the little boy who wants to go home “now please?” and the glass-packed muffler on the street rod outside, and, oh, wait, is that a train?

There is so much data, so much to fill each second. So much that it hurts. It claws at me. It reaves my inner walls and makes me look for psychological plywood to batten down my hatches.

And sometimes it is too much.

You say to me, “My words are more important than your trains. My words are more important than your words. Be nice. Don’t hit. Obey the rules. Smile. Laugh at my jokes. Remember this, remember that. This is important!”

And you drown me in your words.

And so I melt down.

On the best of days I take myself home and I rest. I read quietly or think about the trains in the Punjab.

I wonder why your words are so important, I wonder why the fork goes on the right. I wonder why you want to shake my hands, see my eyes. These things are arbitrary things. Not like Watt’s steam engine, not like pipes, and condensers, and metal stresses. Trains are real. Trains are concrete.

Manners are just more rules, and what are rules, words and what are words, sounds.

Social conventions. Mass hallucinations. Subject to change and flux and, God help me, fashion. Different from country to country, heck, from town to town. All strains on some theme for social groupings.

Not for me.

But I want to please you. I want to fit in. I want to learn. I want to love and to be loved… and so I study. I think. I memorize. I adapt. (Yes, we can do that. ) I take lessons. I do therapy.

I train.

But it is hard.

I recover slowly. I run out of spoons. Be patient with me.

After all I am being patient with you.

Image via Thinkstock.

I have a confession. My life is a paradox. On one hand, public speaking is my profession. I enjoy my job. I feel I have both a calling and a gift to do it. Then there is the side of me that doesn’t like to talk at all. I’m terrified of meeting new people, socializing in large crowds and carrying on small talk. I’m often lost on what to say and when to say it. I’m completely uncomfortable in strange places with strange people. Sometimes, I won’t even leave my home.

I live with this daily, and I’ve learned to accept these two different sides of my personality even when others can’t seem to understand it.

Silence and solitude are at times my greatest assets. It’s not uncommon for me to go hours or sometimes a complete day without speaking. Learning to be comfortable with silence has helped me to become a focused thinker in order to process the world around me in a safe space. Silence is how I handle my sensory processing issues. Yes, there are times that I don’t talk a lot, but I need my moments of solitude in order to stay strong.

Then there are those seasons when silence and solitude are my biggest liabilities. Being comfortable with silence can be just as much a curse as it can be a gift. There are moments when my inclination to stay quiet and alone become the source of my struggles instead of the source of my strength. Sometimes my silence leaves so many stories left untold and unresolved.

One of the most devastating consequences of living with this constant contradiction is the role of depression. Silence ceases to be an asset when I’m unaware or unable to speak out about the secrets of my silent struggle. My story is a story that includes an ongoing struggle with periods of depression.

As a teenager and college student, my desperation to be included, mixed with my natural desire to remain in solitude, created routine periods of depression that led to years of self-medicating through drugs and alcohol. 

As a recently diagnosed adult, I’ve learned the language to describe my struggle, however, there are thousands, if not millions, of teenagers and young adults who are unable to articulate these feelings of despair. This post is for them and the people who love them, so here are just a few tips that I have found helpful in managing my moments of depression:

1. Understand the “norm.”

Every person on the spectrum is different, so reducing their behavior to a standard set of practices is usually not helpful. Instead, understand what normal behavior looks like for them. People on the spectrum also have personalities and likes and dislikes just like everyone else. Try to focus on when they began to show changes in their personalities and moods.

2. Recognize the ripples.

When I’m in a season of depression, the most accurate image I can use to describe it is quicksand. Quicksand can be dangerous, but it doesn’t have to be deadly. One of the primary ways to avoid it all together is to look for ripples in the ground as you walk. Ripples indicate that the ground ahead is unstable.

When managing my life on the spectrum, I’ve learned to do my best to watch out for unstable ground. Excessive changes in routine and/or social interaction can be emotionally, mentally and spiritually draining for me. It also increases the chances of me going into a depressive state. I’m not always good at recognizing when I’m in danger of stepping into the quicksand, so I try to have trusted friends and family who can help me recognize the ripples before I start sinking.

3. Pursue professional help.

When I was much younger I didn’t realize the weight of depression. I didn’t know I was autistic and also didn’t grow up in a culture that talked much about mental health. The result was I turned to drugs and alcohol as teen and young adult in order to self medicate.

I now have an extremely high view and value for seeking professional help. I see my therapist (who also diagnosed me with Asperger’s syndrome) at least once a month since my diagnosis almost two years ago. At this time, my depression doesn’t require medication, however, there are situations that may require the use of medication, and I recommend seeing a professional who can help you make those decisions for yourself or your loved one.

4. Respect the need for rest.

People on the spectrum don’t experience meltdowns or shutdowns because they are underwhelmed. Those moments, along with periods of depression, are usually the result of being overwhelmed. I have recently observed that my extraordinary ability to focus on tasks can, at times, cause me to go long periods without resting.

When I speak of rest, I am speaking about more than just sleep, which is needed. I’m talking about the rest of the mind and spirit. For me, rest is spiritual, so my faith plays a large role in how I manage my moments of depression. I encourage you or the person you love to find an activity that helps the soul to rest.

Depression on the spectrum can feel like walking in quicksand. The harder you try to get
out of it by yourself, the worse it feels, but I’ve learned that learning to speak up is the best way to get help when you need it the most.

My hope is you will learn there are times when it’s OK to speak up and allow others to help pull you out.

You are not alone. 

Imagine someone Googling how to help you cope with your (or a loved one’s) diagnosis. Write the article you’d want them to find. If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

My daughter had several loud, long drawn out meltdowns at the store today. Multiple adults stared, several made comments (“You are being ridiculous.), none of which helped me, my daughter or her siblings. They only added to her meltdowns and our sense of helplessness. My daughter happens to be on the autism spectrum and was having an unusually sensitive kind of day. It wasn’t any of these adults’ jobs to recognize autism, although my initial anger and frustration boiled from their lack of empathy of the fact that she was clearly struggling. I wanted to point out, “Hey, she has autism, cut us a break.”

Later, as I went on a therapeutic run, a plea grew in my mind, and I want to share it with you:

If you see a child in the store or any public arena having a meltdown, please have empathy. The child may be autistic, bipolar, hungry, tired. The child may be going through the loss of a loved one or struggling with bullies. In your short observation of the child’s behavior, you aren’t able to see what is under the surface, what triggered the behavior.

I think you are trying to be helpful when you offer advice and correction, but please realize your 10 seconds of “parental” correction is anything but helpful. The parent who is with the child has been parenting them for years. Your transient attempt at correcting   another adult’s child will only succeed at further frustrating and hurting a family clearly at its max. The child is not going to miraculously respond to your correction and say, “You are right, I am behaving ridiculously, I’ll straighten out now, just for you.” (If only it were so easy.) And trust me, that parent is not going to go home and say, “Wow, if only I told my child their behavior was ridiculous more often, they might be better behaved.”

If you truly desire to be helpful instead of just unkind (I’ll give you the benefit of the doubt), please don’t offer advice, correction or opinions about the child’s behavior. It will only add to the stress of that family’s day.

What you can offer:

Graciously allow them to go in front of you in the checkout line.

Offer them a gentle knowing smile.

Offer to help them empty their cart or offer to carry their groceries.

If you can’t offer anything, please just ignore them. Trust me, the inconvenience and interruption the meltdown caused to your day is far less than what it caused for them and their family. Please remember, you never know why the child is having a meltdown. Please don’t judge.

mom and two daughters in the car

This goes beyond meltdowns in grocery stores. The world would be a much kinder place if we all took a moment to think before we speak and if we gave people the benefit of the doubt instead of judging harshly. You never know what others are going through or struggling with.

Kindness, love, mercy, empathy, patience, and understanding. Practice these things, and you could change lives, including your own. You will find yourself with far more peace than if you spend your life judging, angry, and unsympathetic. Everyone wins… including this autism mom just trying to get groceries and her autistic daughter struggling to understand the world and wondering why strangers are being so mean to her.

Top photo via Thinkstock.

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