Lynn Dixon

How Raising an Autistic Child Has Challenged (and Strengthened) My Marriage

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This month, my husband and I will celebrate our twentieth wedding anniversary.

Twenty years ago, I wasn’t concerned with the latest autism research, inclusive education or fighting for disability rights. I was worried about my weight.

My wedding dress fit perfectly except for an ugly bulge of belly fat. Three weeks out from W-Day, I started an emergency Slim-Fast diet, replacing meals with eight ounces of pink, strawberry-flavored froth.

By some twist of logic, I persuaded my fiancé to diet with me. It wasn’t fair, I protested, that brides have to starve themselves into Barbie-sized dresses while grooms get to marry in the relative comfort of suit pants. I railed against unrealistic images of feminine beauty, sexual double standards and the objectification of women until he said, “Alright. I’ll do it.”

Every night for three weeks, we power-walked around our Chicago neighborhood, returning to our battered, shoebox-sized apartment. We’d roll out the TV cart, crack open two cans of Slim-Fast and watch countless episodes of Mad About You. We couldn’t wait to be married, simply so we could go back to eating solid food.

Fourteen years later, we were blessed with a son. It was a difficult conception and a near-catastrophic birth, followed by several years of anxiety about his development. By age 2, it was evident to me that our son had challenges and required more help than we alone could give him. My husband disagreed.

For several months, we stayed up most nights arguing. We fought over the inconceivable question of whether or not there was something “wrong” with our child. I maintained that our son’s behavior was out-of-the-ordinary and we needed to intervene now. I cited as evidence the increasing number of “incident slips” being sent home from our son’s preschool and their urging to get him evaluated.

My husband agreed our son could be intense and difficult to manage, but not exceptionally so. Lots of boys act up, he insisted. He wanted to hold off on any kind of evaluation to see if our son’s issues would resolve themselves over time. He didn’t want some doctor mislabeling or meddling with his boy. He accused me of over-reacting; I accused him of denial.

The distance between us grew. In the past, we’d always been on the same team. Whether partaking in a ridiculous diet, facing a family death or undergoing infertility treatments, we’d endured our struggles together. Now, when the stakes were highest, we each felt abandoned by the other.

The turning point came late one night after a prolonged argument. We each lay in bed, staring up at the ceiling in a silent stalemate. We had reached that devastating precipice in a marriage where there is nothing left to say and the future feels uncertain.

Finally, I turned and faced my husband. It was as though I was seeing him for the first time in months. His eyes were red and swollen and his forehead deeply creased. His look devastated me. I saw in it a mirror of the worry and anguish I thought I carried alone. He clearly felt it too. Seeing him so vulnerable stripped me of my own defenses. I began to cry.

“I’m so scared,” I said. “I love him so much. I don’t know what to do.”

“Me too,” he said.

We reached out and held each other tightly.

I can’t say we’ve agreed on everything since. When we do disagree, it’s this place we try to return to: a place of joint tenderness and vulnerability, of being held together by our fears but united in our love for our child. Neither of us would ever accuse the other of not loving our son. We both want what’s best for him even when we disagree on what that is.

I never lost my belly fat. Two kids and 20 years have only added more bulges. Still, I might purchase some Slim-Fast for our twentieth anniversary. We can split a can, watch reruns of Mad About You and remind ourselves of the challenges we have overcome.

The original version of this post was published here.

Tina Medlock

Staying Positive, Even When Some Days Are Hard

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The power of social media and the internet is amazing. Information is at our fingertips whenever we’re ready to access it. Yet, immediately after Joseph was diagnosed with autism, I could not face the plethora of information that was out there. It was simply too overwhelming.

Support groups, online chat forums, literature, workshops. You name it, it was there ready and waiting, but my emotional state at that time couldn’t absorb what I knew was there to help me.

When I did eventually open up, it seemed like everyone knew someone who was autistic and had a story to tell. Although well-meaning, I still didn’t want to hear it.

The reality of autism is there are so many different facets to it. At age 3, I didn’t know where my son would fit; I still don’t know now. I’ve heard countless tales about people with autism who go on to gain a degree, get married, live independently. And whilst these very stories are amazing and give me hope, I know that it is highly unlikely that Joseph will achieve any of these.

Now please don’t mistake me for one of those parents who cannot see any positives and who doesn’t encourage their child to reach for the stars—far from it! And equally, I won’t be told that my son won’t achieve anything, either. It’s just so hard to know what the end game will actually be and this is why I avoided reading too much about autism in those early days.

I didn’t want to be surrounded by negativity and I don’t want to be surrounded by false hope. I needed to feel comfortable with the diagnosis before I could expose myself to those situations.

I recall sitting amongst a group of parents, who talked for two hours about all the issues that were causing them stress. Although I strongly believe in the need to offload now, it wasn’t for me then. I wanted to be surrounded by people who were slightly further down the road, who could tell me: “You know, I absolutely get where you are coming from and that it is shit, but you’ll get through it.”

So, by the time I started my blog, I decided that’s what I wanted to be able to do for other people. I can’t tell you whether your child will be capable of attending a mainstream school or a specialist one. I can’t tell you whether your child will ever sleep through the night or whether they’ll ever use the toilet. But what I can tell you is this: We all have very different experiences, and your parenting style needs to fit with you as a family.

Never assume that your child cannot achieve something, purely because of his or her diagnosis. It may create hurdles along the way, but I truly believe that Joseph may not have had the same successes if I’d had a different attitude.

I once heard a parent say that her child constantly took his coat off in the middle of winter and didn’t feel the cold. She went on to say that she couldn’t tell him to put it on because he had autism—he wouldn’t understand. How did she know that? How did she know that part of it wasn’t him being a typical 4-year-old boy pushing the boundaries?

Truth be told, I never know how much of what Joseph is rebelling against is due to his autism or because he’s a bright young lad who’s trying his luck. If I always said that he couldn’t do something because of his autism, I am certain we would be dealing with a very different child now.

I’ve always had the “can do” attitude and want Joseph to be exposed to as many different situations as he possibly can. I want to push him out of his comfort zone without him falling to pieces, so that he can see and feel more of the world. I access as many mainstream activities and services as possible, but know when to pick my battles and choose something that may be tailored to children with autism.

I’m a strong advocate for inclusion and integrating children with additional needs into mainstream education, with the caveat that they are able to learn, achieve and receive appropriate support. Looking to the future, it is likely that Joseph won’t continue his education within mainstream, and there would have been a time that I would have seen that as a failure on my part.

Now I realise that failing would only be if I put my own needs before his.

Kieran Rose

How We Hide Our Autism

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If you are the parent of an Autistic child, I’m going to introduce you to a concept that’s going to scare the pants off you: Your child is going to grow up to be me.

I am an Autistic adult.

Some people are of the belief that you can grow out of Autism, or that with the right support and interventions, Autism can be cured or lessened. If you’re one of those people, then I’m about to blow your minds with a second concept:

Nobody grows out of Autism and a child cannot be trained out of it. We just get better at hiding it.

Some of us have help hiding our Autistic nature and traits, through ABA or other interventions. Those of us who went undiagnosed learn to do it ourselves. It’s called Masking.

Masking is exactly what it sounds like: We put a mask on—a Neurotypical one.

————–

I notice the music thumping before I even get there.  

I walk up the path and ring the doorbell, hoping nobody will hear, so I can slip away unnoticed. But, of course, they hear.

The door swings open. Light and sound explode outwards in my face, forcing me to take an involuntarily step backwards.

The switch flips, the mask drops down.

“Hey, how are you doing?” I ask as I push in. I can already feel the real me slipping away, the script held firmly in the forefront of my brain.

I shrug off my coat and pass it to the host, remembering to give them a winning smile. I don’t know what I’m going to win with it, but it’s there anyway.  

A shake of the hands, trying not to die internally as my whole body wants to seize up, run away and scream at their touch, fire lancing from my palm, slamming up my arm and setting alarm bells off in my mind.

They gesture down the hall, so down the hall I go. The thumping of the bass is making me bounce on the crumb-littered carpet, the cacophony of voices merging with the shrill Christmas music, blasting out of the speakers. Everywhere is light and bright, the twinkle and sparkle and flash irritating my eyes and making my head spin.

I deposit myself firmly in a corner, clutching a drink handed to me by the host. People talk to me but I’m separate from myself now, helicopter viewing.  

Watching myself mutter and mumble painfully, not even hearing what the other person is saying; Screaming at myself to get out, to just leave, to escape into the silence of the night, the darkness. To get home where it’s safe.

Except I don’t. I can’t. 

 I’m masking and performing.

Happy Christmas.

—————

Those of you that have young children who are fine at school but melt down at home have already witnessed it, as they are the ones who are especially good at it. Conforming at school is masking.

All day we “pretend” that we are NT. We make eye contact, a bit of small talk; we certainly don’t stim or fidget. We contain ourselves and outwardly make it appear that we are everyday people, doing everyday things.

Some of us take off the mask when we get home; those are the ones who melt down when they get home from school and you can’t figure out why.

There’s a reason for that Meltdown though.

If you can, imagine a day at school when you are Autistic: Hundreds of children, bells ringing periodically, people bumping into you, touching you, trying to listen to a teacher but your brain can’t process it quickly enough, the roar of voices, the ticking of clocks, movement everywhere. It’s a complete assault on each of your senses for seven hours a day without a break or let up.

Then you get home and it’s safe and calm, so you take the mask off. Kind of like shaking a fizzy drink bottle all day, then unscrewing the lid. The fizzy drink explodes everywhere.

Some of us don’t take off the mask; we come home and conform there, too. Whether as a child or as an adult, we lock ourselves into our masks. Our parents, our partners, our friends—none of them see the real us, the way we are underneath.

The biggest issue with masking is that a lot of it is conscious. We are aware we are doing it (once you get to later life it becomes a kind of autopilot), so can you imagine what kind of Herculean effort it takes?

Eye contact, social cues, waiting for the right moment to speak, don’t speak too much, don’t spin, don’t flap, hold it in, try to cut out the noise, don’t freak out that someone is touching you, remember your script, don’t say what you think, read between the lines, don’t be so literal, don’t just scream, focus on the conversation, ignore the six million thoughts running through your head at once.

Can you imagine holding all of that in your head while trying to hold a conversation? Or listen to a teacher? Or purchase something from a shop?

It’s utterly exhausting, both physically and mentally.

There are those of us who went undiagnosed; We Are the Expert Maskers. Some of us have been doing it for so long we run it on autopilot.

We’ve compartmentalised our brains so that we’ve cut ourselves off from that part of it. We aren’t aware of it, but the same huge mental process is burning away. Some of us have even convinced ourselves that it isn’t real, that we don’t do it. But it’s always there, that nagging memorandum that we’re able to tap into it at any time and remind ourselves that we are different, we don’t fit in…

For decades, it’s been the undiagnosed that have suffered. Years of masking takes its toll.

Tina Medlock

Why It’s Actually Not Selfish to Take a Holiday

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A long time ago, when my views on life were less complex and everything fit into a box, I was horrified to hear that parents went away without their children. After all, why on earth have children if you are going to continue with your life pre-children and not involve them in absolutely everything?

That was before a divorce and before autism entered our lives. That was before I realised the struggles that people have in this generation; juggling work, relationships and parenting. That was when my narrow-minded views allowed me to judge other people’s lives without truly understanding much about mental health.

Being a divorcee with a child means that I’m afforded time without my son. Initially, it meant I could work a night shift without exploring other avenues for childcare, but I never really got any downtime. That period ran simultaneously alongside a diagnosis of autism, and I’m not going to flower it up–it was bloody hard. I spent days running on empty, managing night shifts and a child with a variety of needs. Seemingly, sleep wasn’t one of them. Social media forced me to believe that I needed to be everything to everyone and the child comes first. Without question, my son is at the forefront of my mind just about every waking and sleeping hour, but I neglected myself and my own well-being and that inevitably impacted my ability to parent Joseph effectively.

It was a hard lesson to learn, but I have tried to correct that. I have made time for myself and other people, and allowed myself not to feel guilty for unashamedly being me in my own right and not just Joseph’s Mum.

Over time, I have managed my and Joseph’s time together more effectively, and taken advantage of the time he has with his dad. There has to be some benefits of a divorce, right? I have nights where I do all the things I haven’t been able to when Joseph’s around. I have nights where I do very little and take myself off to bed early to catch up on some much-needed sleep.

But there are also times when Joseph is with his dad for a couple of nights together, or he takes him on holiday for a week, and that’s when I put my heart and soul into planning “me time” or time for my current relationship. I tie myself in knots deciding what I want to do. Do I want to do 32 things in two days or do I want to just relax in the sun and chill? I want it all, obviously.

So when I hear the words “you’re lucky to get time away,” it saddens me. I don’t consider myself particularly unlucky, but I know what it has taken to ensure this time happens and the planning involved to make it run smoothly for all of us. I know what I deal with every day as a parent of a child with additional needs and would consider the words a poor choice.

I’m well aware of parents–not just parents of children with additional needs–who do not get that respite and I know that may be for a variety of reasons: choice, nobody to assist or guilt. Society expects so much from us and we place too many expectations on ourselves.

It’s not easy to shut off when you are away, as you naturally worry for that child who you PA for, not just provide personal care and wonder whether anyone else can do it to the same standards. What I’ve found is, they actually can. How does Joseph cope? Marvellously, and he looks forward to his “holiday” time too, which removes some of the guilt and gives me assurance that he is not totally reliant on me. When I return, do I get a massive hug and him telling me that he has missed me? Absolutely not, he treats me like he saw me the day before in his usual offhand manner!

So whilst I have the opportunity, long may this continue. I don’t need to justify myself or feel that I’m lucky, but I would like people to read this and feel empowered to do the same.

Ellie Whetzel

I’m Thankful for the Good Days

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Pulling into Leo’s school today for morning dropoff, I cautiously peered into my rearview mirror, surveying Leo’s expression. Last week was one of those exceedingly challenging ones for my boy, across all environments: school, home, therapy…

Relief swept over me this past weekend as I’d noticed a transformation back to the joyful boy that I know. I was hoping beyond all measure that this positive swing would transfer to school as well.

Leo appeared calm as I parked, emitting some familiar “coos,” which are generally a sign he is at ease with the situation. His teacher approached our car while I unbuckled him from his seat.

“Come on, baby,” I coaxed, guiding Leo outside, and placing his bookbag onto his shoulders.

“Leo, you’re wearing your Dory shirt!” His teacher sweetly commented.

He smiled, taking her hand and allowing me a kiss before they walked away. I sat in the car for a few moments, watching as they approached the building, stopping along the way so they could work on his greetings.

With prompting, he waved “hi” to another teacher…a classmate. He seemed okay, as I looked on, even after they were out of sight…and holding my breath while I drove away…

When the overwhelmingly challenging days occur for my boy, and string together for any length of time, it feels as if I’m in a constant state of trying to put out the fires…or at the very least contain them.

The question of “why” he’s having such a hard time is not always crystal clear. In fact, there is almost always some level of mystery, or uncertainty surrounding what is causing the new behaviors, added challenges, etc…

I arrived at his school a little earlier than usual this afternoon, eagerly awaiting dismissal.

Leo exited the building holding his teacher’s hand, just as he had when I left him this morning. And as I neared him, I knelt down, kissing his cheek as I had this morning…

“He had a good day.” His teacher spoke, soft yet reassuringly, perhaps aware of my brewing anxiety.

And I exhaled fully for what felt like the first time all day, grateful for this “good day” for my boy, grateful for a teacher who works tirelessly to help him through the difficult days.

There will be more of those to come, of course…

But for tonight, I’m going to (try) to let the worry go.

Because today… Today was a good day.

Melissa Cote

How Cinderella Made My Autistic Daughter Feel Like a Princess

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Birthdays are supposed to be fun and exciting for little kids. I know my six-year-old daughter, Anna, is already planning her next birthday party and theme, and it’s only the night after her sixth party ended…she’s that excited!

Birthdays were always so exciting and fun for me too; so much so that I would have my girls’ parties planned, right down to the decorations, months before the party.

That changed for me a month before my youngest daughter, Zoey, turned 2. That was when she was diagnosed with severe non-verbal autism, global developmental delay, and dyspraxia of speech. She would soon also be diagnosed with extreme ADHD.

I tried to pull myself together enough to plan her birthday party, and do it just like I had done her first birthday party and all six of her older sister’s birthday parties. Her second birthday didn’t go as planned, and I would eventually realize that none of her birthdays would go as planned ever again. I tried though; each year I tried.

Her third birthday party was too loud and sensory overload took over—she couldn’t blow out her candles, and we didn’t sing “Happy Birthday” because she started to cover her ears from the noise. I took some flak from some family members because we didn’t sing the “Happy Birthday” song, but I did what was best for my child and will continue to always do so.

Zoey’s fourth birthday was a beautiful, sunny day, and I invited just small a group of family and friends for an ice cream social. Ice cream is her favorite, so I thought, “why not build-your-own sundaes?”

She saw everyone gathered around and immediately came over to me to escape the small crowd. I knew it was too much; she wasn’t comfortable. She motioned for the two of us to go inside, and I granted her that. After all, it was HER day. While our friends and family gathered outside eating cake and ice cream sundaes, Zoey and I played with some of the very cool sensory toys that she had gotten as gifts.

Being social is very difficult for Zoey. If we have company, she usually retreats to her sensory room for a “break” and I respect her wishes every time.

I had no idea what I was going to do this year for her fifth birthday. I know that 5 is a milestone birthday and, thanks to school and therapy, she had come a long way from years past.

I noticed she was listening to the original Cinderella cartoon songs on her tablet. She would sing along with Cinderella to the song, “Sweet Nightingale,” and watching her sing was beautiful. Soon, she started watching the cartoon and she never shut the TV off, which she usually does—she was actually enjoying it and captivated by it! It made my heart happy to see her enjoy something. Zoey liked Cinderella.

I did some research and found Precious Parties by Kayla, which does Princess Parties. I got in contact with Kayla and asked if she would come visit Zoey on her birthday, explaining that she has autism and got overwhelmed easily. We booked her: Cinderella was coming to Zoey’s fifth birthday.

Cinderella arrived not long after our guests. All the other children squealed with excitement when Cinderella sat down and gathered the children around her to show them a treasure chest full of trinkets and fairy wings. Then she pulled out a Cinderella book, looked right at Zoey, and pointed to Cinderella on the cover and then at herself. Zoey said, “Cerella.”

Zoey knew that Cinderella was here at our house. It was overwhelming for her and she took many breaks. Cinderella did face painting on all the other kids while Zoey sat on the couch, having me give her deep compression (squeezes) on her legs. My husband came over to us and said, “Cinderella is here for you, baby girl.” Zoey kept taking my hands to do deep compression on her legs, as I looked up at my husband and said, “We tried, we tried.”

Zoey was definitely intrigued by this beautiful Cinderella at our house, and she actually went up and approached her three times. I was moved and close to tears, because no matter what Cinderella was doing—face painting a child, answering a question, whatever it was she was doing—she stopped every time Zoey approached her, and she treated her like the special little princess that she is. That meant everything to me.

We brought out the cake and we sang “Happy Birthday” to Zoey, and it was the first year that she blew out her candles. Cinderella cut her cake, took pictures, signed autographs, and then said her goodbyes, and off she left on her way back to Prince Charming.

Thank you, Cinderella, for making THIS birthday special for my special girl. It went exactly how I had planned.

Laura Rutherford

The Big Little Sister

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My son Brody is 5 years old. Cognitively, due to his autism and disabilities, he is around the age of 18 months to 2 years (or less, if you read the last assessment he had of this kind). My daughter Sydney is a neurotypical 2-year-old.

Both are very different. Both are very beautiful. And both are very much loved.

To Syd, Brody is Brody. She accepts him for who is he—her brother. And in a world where we really should just embrace differences and celebrate them, that is a beautiful thing. Because, sadly, this isn’t always the case.

When she was younger, I heard the phrase “big little sister/brother” thrown about by fellow parents of children with disabilities. And now she is a little older, I’ve begun to know exactly what they meant. Because a big little sister is exactly what Syd has become—and an awesome one at that.

The movie star, Sally Phillips, whose eldest son Ollie has Down syndrome, once said something that I love and can relate with:

“The siblings of special needs children are quite special. Absolutely accepting and totally loving, from birth, someone who is different mentally, and has a different way of seeing the world, is a wonderful trait. It’s a trait I wish there was another way of getting, but there isn’t. And it does involve a degree of not having it fantastically easy.”

Because you see, that’s exactly it. Being a big little sister is an amazing thing. But it can’t always be easy.

I imagine that there will be times when she wants to do things and we can’t.

I imagine that there will be times when she’ll see the world treat Brody differently and she’ll struggle to understand and will feel upset and angry.

I imagine that there will come a time why she wonders why they don’t go to the same school.

And I’m waiting for the day she asks why he doesn’t talk back or play with her quite the way a typical child would.

But let me tell you this.

I know that no child will ever “get” Brody more.

I know that no child will quite fight for him like she will.

And I know that no child will love him quite as much for who he is.

Her brother.

Brody.

Whilst she has taught him lots, he is teaching her too and he will help to shape who she becomes.

A caring and accepting person.

What a wonderful gift.

Helen Needham

How I See Myself in You

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For seven years, I have watched you grow and your personality unfold. Before you arrived, I wondered what life with you would be like. After you arrived, I knew that life was different but didn’t realise how much I would learn from you. Through you, I have learnt what it means to be a mother, understood more about the person I want to be, and discovered new things about who I am.

I love your curiosity and independence, which were both evident from an early age. When faced with a challenge, you will always find a way to get around it. At 2, you used the filing box to help you reach the desktop and use the computer. At 4, you took Dad’s photo on his phone and tried to use it to access the Xbox using the facial recognition login. Recently, you almost worked out the iPad pin code after you set Dad a quiz about everything—from his birthday and favourite colour to his parents’ birth dates.

Like you, I enjoy the challenge of working things out and finding answers. Puzzle solving is a big part of my job. There is nothing more exciting than a problem to be solved, even if it does take a while. When faced with a challenge I can become wrapped up in it for hours and days, oblivious to the world around me until I have completed the task. This is so similar to the way you can get lost in a world of your own and spend hours working on your Lego masterpieces.

Life is the biggest puzzle facing us both, as we attempt to navigate through the twists and turns of what can often be a confusing world.

School turned out to be a bit of a surprise for us all. The demands of lessons and lunchtimes were overwhelming, and you often clashed with your classmates. As your refusal to participate in lessons and emotional outbursts increased, we realised that you couldn’t cope. Your anxiety was at an all-time high, and our hearts broke to see you struggle so much when we didn’t know how to help you.

While you struggled at school, I struggled at work. I have often been called out for being challenging, abrasive, inflexible, or inconsiderate of others. The reason is that I also struggle when there is uncertainty, an unexpected change, or when everyone has a different view about how to get things done. I don’t mean to be difficult—I just want to make sure that I get the job done on time to a high standard, and it sometimes takes me a while to get my head around different points of view. After years of conflict, and many unsuccessful attempts to change, my own anxiety has rocketed as I struggle to be the person they wanted me to be and take the next step in my career.

Things have started to change for us, as you have found the support you need at school and I am learning how to bring about the changes I need at work.

Even with these changes, life can be pretty exhausting at times. It is not always easy dealing with things that are beyond your control or don’t make sense. I have learnt to tell when things are getting too much for you—your voice becomes louder, your actions and language become repetitive and restricted, and your mood becomes more volatile. Signs that you could be headed for a meltdown and need some downtime, distraction, or support to allow you the time and space to deal with things before they get too much to cope with.

I understand how you feel. I often have moments when it all gets too much for me, too. Times when I need to work hard to keep things together, struggle to cope with even the simplest of demands, and need to escape. In supporting you, I have learnt how to identify my own triggers and manage my own stress levels without feeling guilty about the need to take some time out for me.

Together we are learning about self-regulation, and how to keep ourselves on a more even keel.

At night, I love to watch you sleeping, tightly wrapped up in your duvet cocoon. I think about the joy that you bring into my world. How you love to share your knowledge of facts with anyone who will listen, and enjoy using big words and quirky phrases you have heard. How you see life from a different perspective to most people and take great happiness from simple pleasures. How you always say exactly what you are thinking and don’t worry about what other people think.  How loyal you are to the people you have connected with, and how much you enjoy making people laugh.

As I watch you, I think about your spirit and approach to life and how similar it is to my own. We are different. We are the same. Reflections of each other, moving through life along intertwined paths.

Through watching and understanding you, I have discovered that I, too, have autism. In you, I see me and a future where we both can find our place in the world. A world where our differences are celebrated and our struggles are understood.

Anonymous

The Day I Lost My Autistic Child at the Mall

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What sort of mother loses her own child?

What sort of mother loses her non-verbal autistic child in a shopping center on a busy Saturday afternoon?

This mother.

It was all a big misunderstanding. I had to take my other child to the bathroom, so I told the other adult with me where I was going and where I would meet him. He either never heard me or never understood, and I never thought to check as I had to get my other child to the bathroom quickly. In hindsight, I should have checked.

I dealt with the other child and made my way to the agreed meet-up place. Before we even got there, I could tell something wasn’t right. I heard screaming and crying and there were crowds at the doorway of the store I was going to. Mother’s intuition hit me right there. I had that horrible feeling in the pit of my stomach that somehow this was about my son.

I know my son’s scream and those were HIS screams I was hearing. He had someone with him though, right? Except the closer to the noise I got, the better I could see my child lashing out and attacking — through sheer panic — the very people who were clearly trying to help him. I ran over. I can’t run very fast, but adrenaline carried me to my baby.

The noise of the adults shouting, firing off questions and more questions; the piercing of my son’s screams; the blasting of the shop’s music – it was all too much, even for me, let alone my terrified little boy. I grabbed him from the security guard and held him tight. He sobbed and sobbed, more than I had ever known him do before in his life.

“Yes, he’s mine.”

“No, I was not aware he was on his own.”

“Yes, of course I am sorry he was hitting you.”

I fell to my knees with one of my children standing beside me, wondering what this was all about, and the other in a heap on my knee still yelling and crying for all he was worth.

The tears welled up in my eyes and I could not control them falling down my face.

“He’s autistic,” I sniffled softly. “He can’t speak.”

The tuts and stares were so powerful they were like nails piercing right through me.

Finally, the crowd dissipated and only the security guard remained. By this time, the other adult appeared and the reality of what had happened finally hit me. My non-verbal 9-year-old with severe autism had been alone and lost in a busy shopping mall on a busy Saturday afternoon.

It doesn’t matter who was to “blame.” The fact was that it happened.

You can judge me all you like, but every day there are autistic children getting lost because they wander or get attracted to sensory stimuli and they have little or no understanding of danger. My son was found because he was watching the automatic doors open and close, and he was screaming. When the security guard noticed he was alone, he physically stopped him.

My son was not crying because he realized he was lost or because he missed me. He has no concept of what lost even means.

I have to live with what happened today. I have to find a way to keep him safe even when there are other adults with me. It should never have happened, but it did.

Please don’t be too quick to judge me.

Please be aware that children with autism are especially vulnerable. Be aware that not every child can even tell you their name or where they live. Be aware that, in seconds, a child can wander.

Be aware than even good parents like me can lose their autistic child, and we have to live with that for the rest of our lives. No judgment from anyone else will be greater than the guilt I have to live with now.

My story ended well. Not every story like mine will.

Losing your non-verbal autistic child: there is nothing more terrifying in the whole wide world.

E.C. Wells

I’m Autistic: Please Don’t Normalize Me

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Understanding me is hard because communication in general is hard for me. I struggle with social skills and facial expressions that come so naturally to a large majority of the population. So, when people deal with me, they often treat me like they would any other person. That would be fine if I wasn’t Autistic.

As a child, I was told to pay attention quite a lot. But honestly, that phrase confused me. I was paying attention—to the thing that distracted me from what they wanted me to focus on. It had my full attention, in fact. But apparently, that was wrong.

This is my perspective. This is the reason I used to give a blank expression back when people got frustrated with me. I simply couldn’t process what they were telling me. To this day, vague comments really confuse me. I’m not sure why exactly, but it really helps when someone explains what they want me to do instead of a hint or frustrated quip.

Please be specific. Tell me, “I’ll be there at six to pick you up,” or “Make sure you have all the materials with you for D&D today.” That structure is important to me.

So, why then is it surprising when I get distracted? “Please focus back on the book.” Oh, yes, there is a book I need to pay attention to. Sure, I can do that. Instead of just, “Pay attention.”

Sometimes, my mind wanders again because of a sound, or because my clothes are itchy. “Can you focus back on the book?” Honestly, it’s times like this that I need to get up and do things, but I never tell anyone because I think everyone feels that way… How can anyone just sit still that long? Thankfully, when I was younger some people understood that and I was able to do jumping jacks between lessons or take a break. Even now,as an adult, I dance to music or watch a show while I do chores.

If I ever focus too much on one task I start getting overstimulated. I don’t know if it’s because of my ADD, autism, anxiety… But I do know when I’m struggling with focus and I need to expel that extra energy. If I don’t, my anxiety does take over.

So, I change my main focus to what they find so important for me to focus on. This gets me questioning why is this so important. I don’t find it important. There must be something wrong with me.  My self-doubt sneaks in. If I don’t understand and they keep saying the same thing, it spirals. I feel like I’m dumb and in the wrong, and I start getting depressed. I figure, I can’t do anything right, and then my anxiety kicks in and I sound aggressive. People who don’t know me well enough think I’m a bully.

To help combat some of the more common things that happen with me, I compiled a list. While these hints may not help every Aspie, I’m hoping they can be of some help.

Please never give me too many choices.

Never ask me what do I want to do today without having an idea of your own. Because if I don’t have any ideas, I will need some from you. It is easier for me to pick between choices then it is to think of every single thing I want to do that day, especially if I’m having a bad day.

The same thing with, “What do you want to eat? What do you want to drink? What do you want to wear?” It’s so much easier for me to answer that I want “that one” versus all of the choices that I have. So, “Would you like almond milk or regular milk?” It’s a simple question and I can answer because you know I like both. “Which would you like to do, go to the park or go swimming?” If I have something different in mind that’s not in the choices, I will tell you. For instance, I will say, “Can we do a walk instead?”

Please never mock or laugh or tease me when I’m wrong. Even if it is meant to be In good humor, I don’t understand and it simply aggravates my anxiety. When I don’t know proper facts, just gently explain how I am misinformed. But be ready for a debate because I am autistic and change is hard. And that includes change of information. Instead of yelling or being mad that I am debating with you, you’re going to have to be ready for it and explain the facts in a way that makes sense. I’m sorry my brain can’t always process the things you say.

Sometimes, I AM the one who is right. For instance, one time I got into a debate with a woman who insisted dogs were not mammals. Anyone who knows science knows she’s wrong. It is really hard for me not to come across as rude or arrogant, but to me a lot of my knowledge seems to be common sense. So, it confuses me when people don’t know the same facts as I do.

If I am rude, I really am sorry. I really mean no harm. I am honestly just not able to understand your point of view. When I chuckle or roll my eyes, that is literally me processing a foreign perspective. It’s not usually a personal attack, but it is often misinterpreted that way. I’m just trying to comprehend someone who is able to think of something so different from my way of thinking.

When I’m having a bad day… usually staff and family members are the first to notice. But sometimes their good intentions can make things worse. During days like this, please give me space. Instead of bombarding me with questions like, “Do I want…,” let my brain process what’s going on and don’t give me things that I already struggle with. Let me do things that I find easy and fun. That way, I won’t struggle with something new because I’m already struggling with something else.

Make simple choices for me. Put on music, or the TV. Or let me play a game. Put food by me, or water. As an adult, I like being asked if I ate already, rather than what do I want. It might just be that I forgot to eat, and I don’t feel well. It happens when I am stressed about something.

The problem is, I don’t often know I am stressed. I just know something feels wrong, which often makes everything feel wrong. I live alone, so my cat is the best therapy. He simply snuggles, and purrs away my bad mood. I then calm down and realize what was bothering me… though some days I never know what was wrong. Patience, unfortunately, is one of the only suggestions I have for this situation.

Please use your “I feel” sentences. Even when we’re young. We really can’t put ourselves in your shoes, without a whole lot of training and understanding. So, when you get upset at us for things, our first reaction is to wonder what we did. But if you say, “I feel frustrated when you break your new toys,” instead of “Why did you do that?” we can apologize and understand why you’re mad.

Also, please accept our apologies and tell us you understand that we didn’t mean to do it and that we’re not bad. Sometimes we don’t know our own strength. Things break because we don’t know how to play with things. Sometimes we get curious and learn the hard way that the doll’s head does not turn that way.

Honestly, observation is key. If you notice we seem surprised or scared, it really was an accident and we just need to be taught how to play with the item. But if it’s done out of anger from your perspective, it could be due to a lot of different reasons. First, anxiety is often mistaken as aggression. Second, why are we angry?

As an adult, I no longer break items because I learned to be gentle, but I sometimes hold things too hard or get upset because they’re not working the way I want them to. Because I don’t process things properly or filter things properly, it really is a split-second between “This is not working” and “I hate it!”

I had to be taught to pause and calm myself when things don’t work. I had to learn that I cannot control everything. I had to learn that the only thing I can control is myself and my own reactions. And honestly, that is a comfort. Even though it’s confusing when things don’t work the way I want them to, I no longer throw things or break things because of it.

And finally, please stop trying to normalize me. I’m autistic, I will not ever be “average.” I may be learning social skills… a lot of them make no sense to me and they will never come naturally. Be patient, and understanding with that fact. My needs will always be my first thought; my disability will never be “fixed.” And that’s NOT a bad thing.