Ace of Spade

The Impact of Shifting the Way We Think About the Autism Spectrum

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Recent years have seen a vast change in the conversation about the autism spectrum, as it is now being led by a variety of autistic people themselves – the only real way of understanding a condition that has no absolutes.

As someone on the spectrum, it has been enlightening to hear the experiences of people worldwide and see the similarities, however vague, that shed light on a condition I’m still understanding. However, despite all the positivity this has created, there is one common absence from many of these stories.

Characteristically struggling to communicate inner emotion, stories of day-to-day happiness are often a rare find in stories written by autistics. The public press uses autistic savants as a benchmark for “good autism” and too often assumes everyone else has a permanent uphill struggle to deal with, ignoring the fact that so many of us are perfectly happy with the lives we lead, irrespective of what others consider “low-” or “high-functioning.”

While I support the message of hope within the autistic community and compassion from the general public, is this paradigm we are creating of fighting a permanent uphill battle the way to achieve our goal?

That goal, in my view, is to create an autistic community that is not excluded for their differences, but celebrated for the gifts they bring, and whose various difficulties are both understood and accounted for.

It may be an idealistic vision, but it is one worth aiming for. It will, however, require integrating into education schemes the daily, admittedly more “unremarkable” stories. Stories that document the success of everyone on the autism spectrum, including those whose autistic qualities are nearly imperceptible to the neurotypical, but are still unique in a misunderstood way.

That publicly held mental image of autism in itself allows for a fascinating thought. If the happiness of autistics from all across the spectrum in as much variety as it allows can be made publicly associated with the condition, it could end the days of stigma. It’s this stigma surrounding autism that has trapped it into such a detrimental narrative from which it is difficult to escape.

I hope members of the autism community will lead the way globally in this shift in the way we think of the autism spectrum, and one day, perhaps all mental and physical health conditions, too.

The actual answer to what makes autistic people happy is, of course, not a single, standard answer; there are no “standards” to work from or to in autism, nor any way to pin down “this is how to be happy.” Its very existence as a complex spectrum of so many variations leads to an neurological ID as personal as a fingerprint. Think of life as a card game as we all play our best cards at the best times, when the opportunity arises, in order to stay in the continuous stream of cards being laid down. We use good cards to compensate for bad ones that we can’t play.

I think of autism as a wild card in the game; it’s one of only a few characteristics (or in this case, a set) that is and can be whatever we choose to make it. A negative stigma on autism creates negative feelings about it; we act on negative feelings, creating negative actions; negative actions creates negative results.

We must use positivity and hope to create positive feelings, positive actions and positive results. What those results are, I cannot say beyond my own.

But, for anyone who did want to know what positive results, success and happiness look like to an autistic person; in this age of easy labeling, it shouldn’t be too hard to spot us, to find us. Leaving conjecture and assumption behind, as we must all eventually do, what’s the best way to find out someone’s reality? Find them, and ask them yourself, of course.

“Before you judge a man, walk a mile in his shoes. After that, who cares? He’s a mile away and you have his shoes.” — Billy Connolly

Image via Thinkstock.

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Why I Don't Mind When People Say 'I'm Sorry' Upon Learning My Daughter Has Autism

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I don’t mind if you say “I’m sorry,” when you find out my 4-year-old daughter is on the autism spectrum. I actually I appreciate it

Many times I have heard and read about how parents of children on the autism spectrum absolutely hate it when someone who has just learned his/her child has autism says. “I’m sorry.” I don’t feel the same way. I’m actually grateful when someone has a polite or empathetic comment to make. Some people don’t know what to say, and instead of being quiet they say things like, “I saw ‘Rain Man,’” “She can talk, she’s not autistic,” “She looks so normal,” and other things I really don’t like to hear, but a sincere “I’m sorry” is not something that bothers me. I do, however, understand that the phrase “I’m sorry” may be viewed as a sign of pity, and our children’s lives are not to be pitied. They’re different, but wonderful lives.

But I don’t mind hearing “I’m sorry,” because I feel the same way… I’m sorry she will have to live in a society that is not prepared to deal with difference. I’m sorry she will have to live in a country where she will be seen as handicapped only because she sees the world in a different way. I’m sorry she has to spend several hours a week going to therapy. I’m sorry she has to miss classes to go to speech therapy twice a week. I’m sorry she can’t enjoy games with her friends because she does’t understand symbolic play the same way other children do. I’m sorry she can’t enjoy playing in the swings because she has proprioceptive issues. I’m sorry she has strong issues with food and textures that don´t allow her to experience the pleasure of eating; she is afraid to try new foods, she hates mushy food and may never experience my joy of eating a warm bowl of freshly mashed potatoes. I’m most sorry about this particular issue because she is not receiving all the nutrients and vitamins she needs from her extremely limited diet, and she has to take vitamin supplements, which she hates.

I’m sorry I had to take her out of her nursery school where she had friends and take her to a new place more suitable for her needs. I’m sorry she will have to go to a different school than the one we wanted her to attend because she needs a more personalized education. I’m sorry she and her sister might not be able to attend the same school just because her sister is neurotypical and she’s not. 

There are so many things in her life I’m sorry about, but there are also so many things I’m not sorry about, things I’ve learned from her that make me happy and proud of who she is and who she’s made me become.

She’s made me realize I have more patience than I new. I learned to cook fruits and vegetables in fun ways she likes and are healthy for her so she doesn’t miss out on the pleasures of eating. I’ve discovered I have very little shame when it comes to making her laugh. I’ve done silly, funny, ridiculous things just to make her smile; before she came along I would’ve never done these things in public. She’s made me find physical strength I never new I had so I can carry her in my arms even when I think I can no longer resist the weight of her 45 pounds, just because she loves it. I’m not sorry for how much she loves birds and how she has made me look past my absolute hatred of them and be able to walk into an aviary and learn names and sounds different birds make.

I’m not sorry how she makes me laugh until I pee in my pants, for how much her sister loves her, for how happy she has made our lives, for how proud she makes us every day when she conquers her fears and tries something new, for how much she adores her father and call him “my prince.”

For this and so much more, I’m not sorry.

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What Life Is Like for Me as a 25-Year-Old on the Autism Spectrum

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Not everyone knows what it’s like living with autism. Thirteen years ago, I found out why I’m different. An estimated one in 68 people around the world are on the autism spectrum, and I can empathize with many autistics facing challenges and obstacles.

At age of 25, my life challenges are increasing because of social pressure in society. Likewise, disability rights are overlooked. People of marginalized and stigmatized backgrounds are continuing to be voiceless and socially isolated.

I grew up with traumatic experiences where I got bullied, insulted and excluded. I have developed language structure problems. Please bear with my grammar in this article because this is the only way I express myself. Every day, people struggle to understand what I mean, what I do, or what I want. That is a typical life of being autistic.

Many times when I’ve tried to express myself, I either offended and scared people away. At this moment, I have no idea what I did wrong. It upsets me a lot when people do these things to me, even my own family and friends. I’ve felt depressed and socially isolated. I’ve felt terrible over people who are not on the autism spectrum who couldn’t try hard enough to express themselves after my own behavior offended and scared them away. It makes me feel like I am doing everything wrong.

I grew up missing out a lot of life opportunities that I always wanted to enjoy, such as having a consistent group of friends, having a job and a relationship. Earlier in my life I missed out on a lot of communication and social skills. Today I am still abused, attacked, bullied and consistently being punished because I am not good at communicating.

I tend to get lost in my mind. At home I sometimes don’t have the energy to find something to do because my mind feels trapped and too focused on the things I really want. Psychologists are there to support people on the spectrum, but it does not improve social awareness and acceptance from the society. So we may continue to isolate ourselves. Consistent unemployment is society’s fault.

People on the autism spectrum often feel voiceless and unheard, and are unintentionally (or intentionally) left out. This pressure causes anxiety and depression in my life.

I really want to empathize with you all. I want to make sure we take actions to improve autistic individuals’ well-being and promote social inclusion and acceptance. I may appear offensive, aggressive or lost, but that does not define me.

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To the Family in the Waiting Room Who Accepted My Son With Autism

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To the family in the waiting room,

Today my little man Brayden, who has autism, continually invaded your personal space, said “excuse me” approximately 10,485 times, and played out some of his favorite YouTube videos live and in living color for you. I find those things some of Brayden’s most endearing qualities. In the past, however, most people have been friendly enough at first, but have eventually ignored him or looked annoyed and I usually have to divert his attention elsewhere.

But today was different. Today was special. Today meant the world to me and you’ll probably never know. You and the young girls with you all interacted with my son. You never flinched when he invaded your personal space or put his hands on you without warning. You never looked annoyed and you never ignored him. Something you said to me made me realize you knew my little guy is “different,” yet you said it subtly enough that you didn’t “out” his differences to the rest of the waiting room. You and your girls played along with all the orders he gave while he was acting out his YouTube videos. None of you made me feel that he was in any way bothering you. You gave him your time. You gave him your patience. He even called one of you “friend.”

Now here’s what you gave me: a restored faith in humanity and a sense of relief. I did not have to constantly pull him away from you. I didn’t have to sit on the edge of my seat. I didn’t have to apologize or explain anything to you; that in itself is worth more to me than you will ever know.

My son is fun-loving, energetic, beautiful, intelligent, silly, sweet, and has an amazing imagination. You and your family saw all of that today, and embraced it. You didn’t see his repetitiveness and his lack of spatial awareness as a problem. The looks on your faces showed love. Your body language spoke volumes. You were relaxed, smiled often, took time out of what you were doing together to involve him (and even let him run the show), and complimented him on his intelligence.

I cannot begin to express enough gratitude for your sincerity today. He may not have seen it, but I did. All he knew was that he made several new friends today — and so did I. All I could muster up to say to you before you left was a simple, “Thank you,” but I wish I could’ve said so much more. Thank you just isn’t enough. Thank you for the love you showed not just my son today, but also to me because of your kindness to him. Thank you for showing me that I don’t always owe the world an explanation, and that I never need to apologize for anything. Thank you for welcoming my child to be your friend today.

I pray you reap what you have sown and are blessed for your kindness. The world would be a better place if there were more people like you in it. I only wish you could see this, so you would know you made my day today. Thank you from the bottom of my heart!

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To Parents of an Autistic Child, From an Adult on the Spectrum

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Dear parent(s) of an autistic child,

I am writing to you from my heart, and I hope you will listen closely. I went the first 50, yes fifty years of my life not knowing I’m autistic. Oh, I knew my entire life that I was different and never fit in. I encountered one obstacle after another, struggled, yet overcame them. I never had any intervention such as psychologists, occupational therapists, IEPs, or medications. Yet I accomplished many things others only dream about. So how was I able to do it all? The answer is my mom. She was my support system, my best friend, and coached me through everything.

One of my biggest accomplishments was earning my Master of Science in Nurse Anesthesia from Columbia University in 1988 and then starting my full time career as a Certified Registered Nurse Anesthetist. I became an internationally published military aviation photojournalist and got to fly in an F-15 fighter jet. I also used to ride horses in show jumping competition over six-foot-high fences. All this, and I didn’t know I’m autistic! I learned about autism only by chance, after a co-worker’s son was diagnosed.

Here is the dedication to my mom in my memoir, which I wrote right after getting diagnosed at age 50, “ASPERGER’S SYNDROME: When Life Hands You Lemons, Make Lemonade.”

I dedicate this book to my mother, Rita, who enabled me to become the person I am today, and for everything I’ve accomplished throughout my life. She has always believed in me and encouraged me to work hard and follow my dreams, no matter how far-fetched they seemed to be. I’ve always dreamed big, and she’s right there to cheer me on. Because we didn’t know I had Asperger’s syndrome when I was a child, indeed there were endless struggles with my “Asperger ways,” but somehow, she instinctively knew exactly what to do with me to keep me calm and focused. I can well remember endless times of getting upset or stressed out over something, but she always remained calm and worked to bring me back to my natural state of peace and calmness. She has devoted her whole life to me, and because of that I have accomplished things that others only dream of, because I focused on the gifts that I was given when I was born with Asperger’s.

My mom died on August 9, 2013. There are no words I can used to describe the loss I still feel from her absence. They say that time heals all wounds, but that’s not quite true. I miss her even more now. There are so many things I want to tell her. I found my soul mate, Abraham, and had the first-ever All-Autistic Wedding. We are working hard to help change the world’s view of autism, and I’m striving to revolutionize health care for autistic individuals. I’m using my 27 years as a health care professional and my autism to educate health care providers on ways to give the best care possible.

My mom empowered me to be able to do all of these things. This clearly shows you, my dear parent, the power you can have on your child. By providing them with emotional support, you are giving the most powerful gift on earth. I approach each day with my mom’s words of encouragement in my mind, and they are always loud and clear. Even though she’s not here physically, her wisdom is still guiding me, helping me reach my goals.

I believe when your autistic child grows up to become an adult, what they will remember the most is what their parent(s) did for them. Be their support system. Be their source of knowledge, and most of all, love them. They have gifts you can nurture. They will make you proud. You can enable them to become as independent as possible, and fly from the nest. Even after they take flight, your love and support will always be with them on their journey.

Best Wishes,

Anita Lesko, BSN, RN, MS, CRNA

 

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To the Waitress Who Told My Son With Autism to 'Eat All Your Food'

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“Hey, you must eat all your food.”

Those were the words you spoke when you kindly placed our meals on the table. I smiled politely, asked you for a hot chocolate with cream and thanked you for your service. I observed my son’s reaction as he uncomfortably smiled and pushed himself further into his seat, trying to evade your words and looks.

After you left our table, I looked at my son and said to him,“You know she was only being polite when she said you must eat all your food. Do you understand what I mean?” He looked at me with a smile on his face. “Yes, like she was just trying to be nice.”

Before our meals arrived, my son told me he was full. This was after only a few sips of the kid’s size milkshake he excitedly ordered when you seated us.

We ate our meal mostly in silence, content with our worlds. He finished his slice of bacon, quite a feat for him since he usually only eats the cheesy pizza. I enthusiastically applauded him for eating something he usually never eats, and told him I will make a nice sandwich from his leftover toast and scrambled egg. To this he quickly responded, “But Mom, I’m not going to eat it,” anxious at the mere thought of having to finish a sandwich at some point in the day.

I assured him that he didn’t need to eat the sandwich, but that we would take it home, just in case.

My son was constantly checking the time, eager for me to finish my meal so we could leave. I patiently explained to him that I’m not going to be rushed, and that we would leave at 11:15.

At 11:07, you arrived with my hot chocolate and looked at my son’s plate. “Oh my, you haven’t even touched your food. You must eat all your food, don’t waste Mommy’s money.”

You smiled, and I told you, “It’s OK if he doesn’t eat all his food; he has sensory challenges. Please bring me the bill.” But you still looked at him and told him that he should at least finish his milkshake. Then you walked away, oblivious of the now-intrusive nature of your comments.

This time I looked at my son and said, “Did that sound polite?” He shook his head.

I wholeheartedly agreed with his silent answer and told him that your comments were intrusive and inappropriate. You made him feel uncomfortable about his lack of eating. What we initially perceived as politeness had become unprofessional and intrusive conduct. He asked,“Mom, what does intrusive mean?”

This is typical for us; I explain things in life to my son in a way he’ll understand. I explained that intrusive, within this context, is when someone says something and acts in a way that makes us feel uncomfortable. It’s that uneasy feeling we get when someone invades our personal space and comments on our behavior, even though it is none of their business and has no direct impact on their well-being.

My son nodded his head with understanding. I asked him, “Do you think I should educate the waitress about the intrusive nature of her comments?”

He looked at me with his kind eyes and said. “No, it’s OK. I’m sure someone else will.”

However, a few minutes later you came back to clear our table and gave us the bill. I paid and, despite my annoyance with your inappropriate comments, tipped you more than the usual percentage. Still, you did not get the message. Facing me, you cleared my son’s plate and quarter-full milkshake glass, and with no reservations, continued to say to him, “You didn’t even finish your milkshake.” You made him feel uncomfortable! Again!

I wanted to tell you off, but managed to let my cooler  side prevail. I looked at you and said, “I told you that I do not expect him to finish his meal or his milkshake. Your constant comments and questioning him about his eating and drinking, especially after I told you he has sensory challenges, is inappropriate.”

You looked at me blankly – perhaps you have never heard of the term sensory challenges. Nevertheless, you still went on to respond, “At least he drank more of his milkshake.” By now, I was nearing the edge, and politely told you that my son is on the autism spectrum, he eats very little, and this is OK with me and should be of no concern to you.

You smiled dismissively, and said we must enjoy our day. All I could think of was how anxious and uncomfortable you made my son feel at the one place where we can usually just sit and enjoy our meals and each other’s company with no care in the world. We walked out, not having enjoyed our meal.

Today’s bill was far more expensive than I ever expected it to be. You tested my patience and my restraint when you caused my son anxiety in a space that should be child-friendly. Next time, focus on exceptional service without judgment.

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