Mom and son sitting near water, looking at sunset landscape

My Sweet Boy, You’re Different

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Sweet boy, you’re different.

Not to Mummy. Not to Daddy. Not to your little sister. You are our whole world and everything in it. Each eccentricity, each little quirk and trait — they are the rich and joyful substance of our lives. We know no “normal” but the world we inhabit with you. And, to us, it is perfect; we would want no other.

We are all different.

Not a single being on this earth is exactly the same as another. There will always be things that we struggle to understand about one another. That is a reality of what it means to be human.

But your differences begin to stand out more and more, every day; the cloak of youth is beginning to lift, and your peers are starting to be aware of behavior that is strange to them.

In the store, a slightly older boy and his brother are wind-milling and skipping around their mother. They wander over to you, and he speaks. “Hello! I am Sam, and that boy over there is my brother!”

You stim, squeeze your hands close up to your eyes and contort your face as if you are in agony. You are so excited he has spoken to you. You gesture towards yourself, your whole hand forming a point.

“This boy… this boy is H’s brother!” You have trouble getting your words out. I recognize all the quirks of your conversation. You have mimicked what he has said, the information he has provided, but you do not understand the purpose of the conversation. Your mind follows a slightly different script.

The boy frowns. He doesn’t understand why you have said what you said. He doesn’t understand why you pulled such a strange face. He turns away. “Bye!” he yells again as he runs off. You stim again, still so excited. You do not understand the rules that were broken, the judgments that were made.

You are still just delighted that he spoke to you. But one day you will know. And my heart could almost break, sweet boy.

My heart could break to see your desire to join in be thwarted by the quirks that make me love you all the more. The conventions of conversation come so easily to others; it is almost impossible for them to imagine a world where those unconscious rules are so alien.

The children at nursery are afraid of your stimming. They think you are angry with them, or aggressive — when the opposite is true. You are delighted by them, by everything they do, by every word they speak to you, by everything you observe and learn from them.

I wish I could show them. I wish I could explain that you are so sensitive, so kind, so desperate to be their friends, that if they could just accept you, accept what is “strange” to them, their lives would be so enriched by having you, being with you — but they are only 3 and 4. There is no way to force that understanding. Only time, and patience, and failing — perhaps failing many times — will eventually lead you to those who will see what I do.

This is just the beginning.

Truthfully, what hope do we have of sparing you from these judgments? There is not enough opportunity, enough time in the whole world to educate all of those who would question your exquisite oddities.

Will autism ever be wholly accepted? Will there ever be enough awareness?

I hope by writing, by fighting, by helping you carve out a well of understanding, as you grow, there might be less fear, less judgment. And, precious child — who will know what it is to be different more than most — I can help you learn to accept others in all their glorious uniqueness.

The world will be a better place for your presence in it.

Follow this journey on Someone’s Mum.

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How Horses Became a Form of Therapy for Me Before My Autism Diagnosis

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One of my autistic special interests changed the course of my life. I fell in love with horses at the age of 4 after my parents took me for rides on a pony. For 25 cents, they would lead you around the track six times on the pony of your choice. Lots of quarters were spent as they couldn’t get me off that pony. That became the Sunday ritual — take Anita to the pony track and spend half the day there.

Never hearing the word Asperger’s until age 50, then getting diagnosed, I never had any Early Intervention. Actually, I did, only I didn’t know it at the time. The love of pony rides turned into an obsession with horses. As I got older, I desperately wanted riding lessons and a horse of my own. My
parents couldn’t afford either of those, except for an eight-week series of group lessons. That didn’t stop me. When I was 12, I became a working student at a big stable near my home in New Jersey.  I earned riding time and lessons by mucking out stalls, painting fences, picking rocks out of the pastures, and cleaning saddles. The more I worked, the more time I got on the horses.

I was an autistic kid (undiagnosed at that time) who was totally awkward, extremely clumsy, and never looked anyone in the eye. As painful as it was, I had no choice but to interact with people. I’d savor every minute in the saddle. I’d focus on the movement of the horse as he’d walk, listening to the cadence of each hoof as it clip-clopped along. I was mesmerized by it all. I would use the time while in the stalls mucking them out to study each horse, observing their behaviors. The horses seemed just as fascinated by me. They would come by me, nuzzle their soft noses against my face, and seem peaceful.

My dream was to jump horses over big fences in competition. I spent every summer, weekend, and holiday at the stable. Horses were my life. And they were also my therapy. They got me out of my shell, interacting with people, learning how to work, learning how to take instruction from others, and dramatically improving my coordination.

I began working my way up the ladder of riding skills. Of course, part of getting on a horse is the possibility of unintentionally coming off the horse! I can still remember the first fall I sustained. The horse had decided he was enjoying the cold weather, took a leap into the air and started
bucking. Off I went, falling on the ground. I was scared because I couldn’t breathe. I felt like a fish out of water. The instructor ran over to me, and she instructed me to try and relax, and that my breath got knocked out of me. She explained that this is normal after a fall, and in a few moments I’ll be OK. She was right. I then calmed down, and a few moments later, I could slowly take a deep breath in. No injuries, just an unexpected experience. I got up, dusted myself off, and we then went over to retrieve the horse who was standing nearby looking bewildered.

I got back on, only this time I focused more intently on my position in the saddle, and gripped my legs more tightly against his sides. Of course I was scared to get back on, but I did it. It was a learning experience. One of many!

I continued the lessons, the mucking out stalls, and eventually I reached my dream, riding in jumping competition. I was a working student from age 12 to 21. It all changed my life. All the skills I learned during those years empowered me to have the skills necessary for life, and for sure my career as a
Certified Registered Nurse Anesthetist. It also built my self-confidence. I was a little lost soul when I first started out, then blossomed into what I am today. When I see a horse, I get tears in my eyes, as they all have a special place in my heart.

I purchased my first horse at the age of 29, after graduating from Columbia University with my
Master’s in Nurse Anesthesia. The day I received the letter congratulating me on passing my Board exam, I was on a mission to finally get my very own horse. That for sure was one of the highlights of my life. I used to take him to ride in clinics at the United States Equestrian Team’s Olympic Training
Center in Gladstone, New Jersey.

Although I no longer ride, I still have horses, three of them, at home on my farm. They still provide therapy, as it’s peaceful to my soul to simply feed them and watch as they eat their grain then munch on their hay. Looking back over all those years, I see the incredible therapy it provided for me.

Horseback riding is used as therapy for many reasons, and autism can be one of them. I highly encourage parents to consider horse therapy for their autistic child. There is a specialized kind of horse therapy called hippotherapy. The American Hippotherapy Associaton defines it as follows: “The term hippotherapy refers to how occupational therapy, physical therapy, and speech-language pathology professionals use evidence-based practice and clinical reasoning in the purposeful manipulation of equine movement to engage sensory, neuromotor, and cognitive systems to achieve functional outcomes.”

You can read more about this amazing form of therapy on their website at www.theahainc.org.

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With One Question, My Autistic Daughter Changed What I Knew About Empathy

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There is a widely held belief that those on the autistic spectrum lack empathy. It is often referred to by technical names such as “lack of theory of mind” or even “mind blindness” — both meaning a person with autism appears to lack the ability to understand the emotions, thoughts and actions of others. In other words they find it very difficult to put themselves in another person’s shoes. Some examples of this could be laughing at someone who is clearly upset, saying things that could appear as socially inappropriate, or misinterpreting jokes.

A few nights ago though my autistic daughter said something to me about empathy that has taught me so much.

We were reading a book together before bed. It was one of her reading books from school and from a well-used reading scheme. At the end of the story there are some basic comprehension questions, and this night I decided to ask her them.

Part of the story involved some children hiding under a staircase in the dark as a villain came searching for them. The children had to stay quiet to avoid being caught. The question read, “How do you think the children felt when they were hiding from the villain?”

As an adult I thought this would be pretty obvious. But my 7-year-old daughter’s answer was nothing like I expected.

She took a moment to think. Then she looked up and said quite simply:

“How am I supposed to know that, Mum? I can’t ask them!”

What to many would be a fairly typical response from a child with autism actually made me think.

Much of what we see as empathy is actually assumption. The Cambridge dictionary defines empathy as “the ability to share someone else’s feelings or experiences by imagining what it would be like to be in that person’s situation.”

We have to imagine what another person might be feeling. We base our opinions on our own experiences and feelings and assume the other person could be feeling the same. We are guessing!

My daughter struggles with social imagination. But that does not mean she doesn’t care. It does not mean she has no sympathy or feelings towards others. She just doesn’t want to assume, so she has found the perfect way to overcome that: ask them how they are feeling.

How often in life do we assume someone is sad or lonely just because they are sitting by themselves? How many times have we mistaken a smile for happiness? We are all unique complex human beings with complicated emotions and feelings. We deal with life events in very different ways. We can say we empathize with someone based on the fact we imagine they feel how we would in the same position. But in fact they could feel completely differently.

While it may be socially inappropriate to ask someone at a funeral if they are sad, there are times when asking others how they feel is much better than assuming. Asking enables them to express themselves and connects us far better than presumption does.

mom and daughter selfie

I thought I was pretty good at empathy. I would have said those children were frightened or worried, but if I asked them they may have actually been excited, cramped or even thirsty. As my daughter said, how are we supposed to truly know if we don’t ask?

This week I have found myself asking others simple questions rather than presuming I know how they could be feeling: How are you doing? How are you feeling? Are you OK?

Many of the answers are nothing like I would have imagined.

My daughter may struggle with empathy in some ways, but she has taught me so much about it in ways I would never imagine.

Empathy is wonderful, but sometimes asking how someone truly feels is even better.

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Why I Fear Receiving -- or Not Receiving -- an Autism Diagnosis as an Adult

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I’m going to admit it. I’m scared.

Not the ever-present anxiety over the world in general, but truly scared. All journeys begin with a single step, and today I took one that felt as heavy as it was important.

Today, I booked myself in for an autism assessment.

What frightens me most? That the diagnosis will come back true, or that I will return to the limbo of undiagnosed symptoms I don’t understand? Both. Autism is a heavy word. It comes with societal connotations of behavioral problems and disability. I will be labeled “high functioning” because I can eat and speak and shower myself without assistance, and overestimated in my ability to function. I struggle daily in the most invisible ways. My life has been a steep learning curve, a constant development of rules and reactions through trial and error. I have tried almost every tactic to fit in with others, even blending myself so far into the background I began to lose the parts of me that are unique and special.

What ability I had to express happiness and anger I smothered in an effort to not be troublesome. I didn’t ask for help because I feared being a burden. I twisted myself into a figure I believed was more acceptable than who I really am. Someone who abided by the numerous and confusing rules.

I pushed myself beyond the limits to appear more social, tolerated situations that caused me distress because I felt too guilty to escape. Agreed to things I did not want, made changes that did not suit me, perfected the art of a still face and body. I have excellent control of myself. I can hold the pieces together until I’m alone, but once I crack there’s no stopping the emotional flood.

I call those “episodes,” a terrifying outburst of uncontrolled crying and screaming into my pillow. I scratch my arms and legs, berate myself for “losing it.” The more I suppress the episodes, the bigger the eventual explosion. Part of me knows I’m in no danger of hurting myself, but the mere fact that my brain shatters like that is scary. I can only hold my “episodes” back if someone may witness the event. I’m scared to be alone. Scared of what my head may throw at me while I’m vulnerable.

So I struggle. And I hurt. Somehow, I have a job. Full time work is exhausting. I have one day off a week (supposedly for “study”) to cope. My lunch breaks I spend in a dark room, eyes closed. This is how I manage. I compare myself to other, more active, people and see myself as a failure. But I can work, I do work. I’m proud to work and I love my job. That’s where my fear of diagnosis comes from: I feel like the autistic / high functioning stereotypes don’t allow for people like me. A high-functioning person is often viewed as not needing help, and the perception of autism in general can be of limitations. But it’s the labels that create limits that shouldn’t exist.

Still, the label is a resolution. The beginning of a new chapter in my life where I am no longer a mystery, no longer a failing neurotypical but a person with a set of specific challenges that are different than those around me. Diagnosis means developing strategies outside of those I created out of necessity. It means assistance in understanding the world around me. It means forgiving myself for needing to sit at my desk with sunglasses, and accepting the “episodes” as a natural and needed release.

I’m scared to say I am one of you, in case I am not. I’m scared of finding out there is nothing about me that validates my struggle with the world. I’m scared I could be a pretender, invalidating every truth that the autism community is trying to express. If that happens to be the case, I am so terribly sorry.

For better or worse, I will have this assessment. I will find out where I fall.

To those of you who are also considering, or worrying about diagnosis: you are not alone. The bravest thing you can do in your life is to begin understanding the complexities of yourself. It’s also the only way to completely understand how you best function in the world, to optimize your strengths and develop your weaknesses.

Both possible outcomes of the assessment are scary for me. They’re also both exciting in their own way.

It’s OK to be scared. You can come be scared with me.

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Autistic People Should Not Have to Pretend Not to Be Autistic

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There is something known among adults in online autism communities: society expects autistic people to blend in. We live in a world where being different is not always welcomed.

People don’t understand autism and naturally fear what they do not understand. I cannot blame or hold a grudge against these people. They are acting on instinct by excluding what is not the same.

Many introverts can relate to this struggle, as society tends to dote on extroverted and social people.

If you read definitions of “introvert,” you will find the qualities described in a negative and often pathological way most of the time. “Reclusive, self-centered, loner.”

The definitions of the word “extrovert” are almost always more positive. “Social butterfly, energetic, group-minded.”

What is an introverted, socially awkward Aspie to do?

Passing – an autistic person who is trying to blend in and pass off as neurotypical.

Many autistic adults, especially those who are not diagnosed until later in life, have grown up with a sense of shame for their “autistic-ness.” Early on we learn that kids will be mean and tease us if we flap our hands or act too strange.

Fear of bullies is often the first thing that causes us to turn inward. Autistic children are often bullied; mental and physical abuse from our peers is common, and due to our language and communication difficulties we often do not tell adults.

We may not really understand what is being done to us and feel as if our peers are unpredictable, irrational, and dangerous.

We learn to blend in – blend in or be beat down. Our vicious peers teach us that our quirks will not be tolerated. Teachers tell us, “quiet hands, sit still, you cannot wear sunglasses, or hats in the classroom.”

As children many of us are sick or uncomfortable but learn to struggle in silence. It is hard for us to explain the unpleasant sensations in our bodies. My eyes burned from light so I told my mother I had a headache. I took a lot of baby aspirin for no reason when I was little.

Once I remember telling a school nurse I felt like I would throw up in the next hour if I didn’t go home. She told me it was impossible for me to know that. She made me go back to class where I later threw up. She did not understand I was trying to tell her I was getting close to the point of sensory overload, and when I get to that overload I start throwing up. I was undiagnosed. To her I was a child trying to get out of class. This happened to me several times a week, and the school nurse insisted to my mother that I was somehow making myself sick to miss school.

People told me and my family I was lying or making things up. Nobody understood, believed, or wanted to help me. I was dismissed.

Speaking up was not helpful, and sometimes when I did people looked at me like I was making it up, so eventually I stopped.

With no other options I began to pretend to be normal, but blending in has it’s dangers. If people spend enough time with me, they figure out that I am “unique.” In professional settings it takes all of my concentration to hold my “autistic-ness” in.

The offensive “compliment” – “You hide your autism well”  — has been given to me in the past, and ever since I have been greatly disturbed.

Why should I have to hide my autism? Is it something I should be ashamed of? I love who I am and would never want to change that even if I could. Hiding… as if there is something wrong with the way I was born.

Passing is not good for your mental health. It teaches us to have shame in who we are. It gives a message that we are not good enough.

Passing takes up so much of an autistic person’s limited social energy that we go home and have sensory meltdowns the minute we can be alone. When I was a child – and even now with work – I could hold things together through the school day but would come home and fall apart.

If an autistic person is focusing on passing, they are tense, working brain muscles that are not very strong, and are not relaxed. Imagine if you were tense and wound up for 8 to 10 hours straight. How would you feel when you got home?

Eventually this can lead to a total implosion, breakdown, or possibly – when we are having extreme difficulties keeping up with everyone’s expectations of us – a diagnosis.

I have to write everything down because my working memory is not great – but my longterm memory is forever.

I need to be alone. I need to stim. I need to wear hats and sunglasses indoors. I need to avoid bright lights like Gizmo from Gremlins (and sometimes may exclaim “Bright lights!” in a Gizmo voice the instant a bright light stings my eyes and brain).

Even my humor is not understood or appreciated by most people. Not wanting to be thought of as a “childish,” I often keep my fun comments to myself so people never get to know the real fun and silly me.

The modern social world is not built for us – but we are expected to fit into it like a puzzle piece.

I am not a puzzle. I am a human, an Aspie. I’m not like you and shouldn’t have to be.

Trying to fake it is detrimental to my health, and I can’t do it anymore.

#anonymouslyautistic #shecantbeautistic #actuallyautistic

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6-Year-Old Writes Letter Explaining Why We Need to Educate Others About Autism

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A letter written by 6-year-old Lex Camilleri has gone viral thanks to its powerful message about the importance of educating people about autism and other conditions.

“On Monday I felt very sad because a girl in my class said my brother was weird,” Camilleri wrote in her letter. “My brother has autism and is not weird. I would like it if we could learn about all disabilities in schools so that everybody understands that some people are different, but we should all be treated the same.”

Camilleri’s mother posted the letter on Facebook, where it received more than 23,000 likes and 26,000 shares. “This left Lex really upset, but from this she said she wanted to make a change, she wanted to talk about ‘Disability Awareness In Schools’ in her next School Council Meeting, so she wrote a letter (with a little help from me with the spellings) which she handed in last Thursday,” she wrote. “I’m so very proud that Lex has this view and wants to change the way other children view others with disabilities. She is only 6 years old and is already part of the school council, wanting to make this change.”

The post was shared by U.K. organization National Autistic Society, which applauded Camilleri for her wisdom. “We think there should be much more autism understanding in the classroom which is why are encouraging all schools and nurseries around the country to sign up to our free autism resources,” they shared.

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