boy reading in bed in life animated

Last night, my husband Andy and I finally got a chance to watch the widely acclaimed documentary film, “Life, Animated.”

For those who are unfamiliar with the film and best-selling book, “Life, Animated” follows the life of Owen Suskind, a young man on the autism spectrum, who, in his own words, uses his passion for Disney movies to help him make sense and find his place in the world.

I knew the essence of Owen’s story prior to viewing this documentary. He and his parents have appeared on various news programs and talk-show circuits over the past few years, sharing their remarkable journey.

Owen’s life is an inspiring tale, especially for families searching for their own key to unlocking the barriers which may exist for their child.

I had been looking forward to watching this film for quite some time now. I wanted to be inspired… to draw upon parallels between my own child, who similarly to Owen, has a deep and abiding love for Disney animated films. I wanted to feel as though if Owen could defy the odds, so can my Leo.

“Life, Animated” is an extraordinary piece of work. There were indeed moments of hope woven effortlessly throughout the film, simply by way of the Suskinds’ boundless dedication and love for one another.

Owen, the self-described protector of the sidekicks, can deliver every piece of Disney dialogue perfectly. He shows an optimistic view of the world around him.

Like Owen, Leo also experienced regression as a toddler. According to his parents, Owen was 3 when he began regressing and remained nonverbal until the age of 7, when a breakthrough occurred, thanks largely to animated films. In fact, Owen has used Disney films to help him cope with many of life’s challenges.

Watching “Life, Animated,’ I was inspired and filled with some of that hopeful optimism. But as one therapist in the film pointed out, the reality of life is not a Disney movie. And beyond the hopefulness embedded in the film, reality persists.

At the time of filming, Owen was 23, preparing to graduate school and embark on a new journey, moving away from his parents and into an assisted living apartment. While “Life, Animated” delivers an inspiring view of Owen’s incredible progression, we are also given glimpses into the challenges that still exist for him as an autistic adult and the fear and anxiety his parents feel as time continues to march on. They worry about what the future holds for their son.

Thinking about the future for your child or adult can be scary. Each day I stay consumed with the here and now. With helping Leo through his next school day, his next therapy appointment. One more skill mastered, another spoken word to add to the list… Progress clearly pieced together by the work of the past.

little boy smiling

It’s easier for me in so many ways to turn around and see how far Leo has come, rather than look forward 5, 10, 15 years and beyond. Thoughts of the future tend to bring forth uncertainty and fear…

Will Leo have the ability to communicate fully as time goes on? Will he be able to live independently? Will he be OK? Especially when I’m no longer here…

Owen deals with his own heart-wrenching epiphany during the film, and at one point, poignantly asks his mother, “Why is life so full of unfair pain and tragedy?”

“That’s just how life is Owen,” she responds. “You have joyful and happy times, but you also have times of sadness. That’s how life has always been…”

As the credits began to roll, I found myself gripping tightly onto the joy that Owen’s mother spoke of… trying with all my might to bury the fears that were bubbling over in that moment.

“Do you want to talk?” Andy gently asked.

“No,” I whispered, shaking my head, not yet wanting to face those feelings that the film had brought to the surface.

“It’s OK,” he responded. “We can talk about it tomorrow if you want.”

I nodded, while in the process of getting up to check on Leo.

The sweet sounds of his breathing filled the air as I approached. Placing my hand lightly on his little body, I swallowed back tears. I felt his chest peacefully rise and fall, rise and fall. It is impossible to be absolutely certain of what the future will hold for my boy.

But fearing it will not help him.

And what I do know is that just like life, he too will rise and fall…

He will struggle and face challenges, and he will fail.

But he will also persist and persevere.

I kissed his forehead, closed the door behind me and clutched onto the joy, the hope, and love that is ever-present in our lives…

He’s going to be OK.

Follow this journey on My Life With Leo.

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There are many people who dislike using labels for themselves and others. They may not want to feel like they’re being told to be or not be a certain way. They might dislike the idea of fitting neatly inside the given label. People like to feel free, not held down or confined to a certain way of doing things.

While brushing off labels can be liberating, it can potentially be harmful at times if a person views a diagnosis as a label. There are many conditions, that if left undiagnosed, can leave a person feeling isolated and confused.

As a young child on the autism spectrum, even before I was officially diagnosed, I knew I was different. I didn’t quite fit in with the kids in the special education classrooms, but I didn’t always fit in with kids in mainstream classrooms either. I wasn’t made aware of my diagnosis until right before I started high school, and it didn’t come as a surprise. In fact, it was a big relief! For a long period of time, I actually completely and totally believed that I wasn’t human. I thought I belonged to another species, and I just looked human. I had an extremely negative self view. I believed I was unintelligent and “bad.” I don’t know that being told about my diagnosis would’ve helped at such a young age, however, it was extremely beneficial when I got older.

I’m thankful my parents pursued a diagnosis, even when some professionals brushed off their concerns.

A word of advice from an autistic adult with a learning disability — if you are concerned about you or your child having a specific condition, please seek out a professional! I can’t imagine being successful when I hate myself, am frustrated and alone. An official diagnosis of a particular condition does not mean someone is less than. A diagnosis itself will not hold me back. The point of a diagnosis is to bring understanding and awareness. It is then up to the person and their family as to what they will do with it.

Understanding and loving oneself can be essential for success in adulthood. Knowledge and acceptance by the family members can make the world of difference for a child.

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Thinkstock image by syntika

Autism acceptance means embracing us for who we are. It doesn’t mean looking for a “cure” or a way to fix us, but rather helping us navigate this world while capitalizing on our strengths. Everyone on earth wants to be accepted, and not to have the notion of having to be changed forced upon them. This is also true of autistics.

Imagine walking into a foreign land, where everyone is speaking a different language than you are, is dressed differently from you, and has a totally different form of body language than what you’re used to seeing. You don’t know what to do and start to become very anxious. All of a sudden, someone extends a handshake and says to you, “Welcome to our home. We know this is all unfamiliar to you, as your customs are to us, however we will do our best to try and understand your ways of life. All we ask is that you do the same for us. We can learn from each other!”

How wonderful it would be if this were always the case! All too often, the opposite occurs. People see someone who is different and perhaps feel intimidated. Perhaps they view the person as less than. Even worse, they feel compelled to try and make them conform to their ways. Wouldn’t you much rather have the above scenario take place? It’s all we can ask for as human beings.

The next time you run into someone who is autistic, or different from yourself in any way, for that matter, extend that handshake and a smile. You may be making more of an impact on their life than you may realize!

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Thinkstock image by syntika

I couldn’t tell you how many times people have commented my daughter, Beans, has a “grumpy” disposition. I’ve lost track. It feels as if it happens daily, really. But the thing is, she isn’t grumpy – she’s almost 3 years old, she’s a toddler, and she’s also autistic.

If you knew she was autistic, you’d know she doesn’t get “shy” around strangers, she actually struggles socially.

If you knew she was autistic, you’d know it takes her a long time to warm up to people.

If you knew she was autistic, you’d realize trying to get her to give you eye contact or say hello is really distressing for her, and you’d back off.

If you knew she was autistic, you’d know it takes her about half an hour to decide on what item of clothing to wear every morning — despite having a wardrobe full of clothes. She only regularly wears about eight items.

If you knew she was autistic, you wouldn’t use the hand dryer right beside her in the public toilet and you wouldn’t mow when she was around.

If you knew she was autistic, you’d understand why she likes her food divided up sometimes.

If you knew she was autistic, you’d be compassionate and understanding when you see me carrying her everywhere — because her legs tire easily, and they hurt.

If you knew she was autistic, you’d know if the morning routine is deviated from in any large way without warning, she has a difficult time adjusting.

If you knew she was autistic, you’d know how much thunderstorms terrify her.

If you knew she was autistic, you’d know she completely falls apart when she’s itchy.

If you knew she was autistic, you’d know some shoes can take a long time to put on comfortably.

If you knew she was autistic, you’d see how at peace she was when she was playing in water.

If you knew she was autistic, you’d realize an iPad or an iPod can be a parenting tool — not a display of bad parenting.

If you knew she was autistic, you’d realize she’s an imitator and she’s processing her world through watching and copying others.

If you knew she was autistic, you’d see how lining up things and having collections is super calming for her — not funny or odd.

If you knew she was autistic, you’d know when she’s upset and I’m not cuddling her or touching her it’s because she doesn’t like to be cuddled or touched when she’s upset, it’s not because I’m a bad parent.

And if you knew she was autistic, you would know when she smiles it’s authentic; when she laughs it’s from the heart.

When you see her for who she is, hopefully you’ll realize she is not “grumpy.”

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Dear Alysia,

I’ll be completely honest with you — when we first met back in sixth grade in 2000, I couldn’t stand you. I was used to being the teacher’s pet. With my black or white and literal thinking, I followed rules to a “T.” Although I was a goody-two-shoes, my issue was that I misunderstood people easily. I was still awaiting my autism spectrum diagnosis. When you came in the picture, you were so annoyingly perfect! I thought you were smarter, funnier and just all-around better than me. I thought I was weird, but you were even weirder. Those first few months sucked.

Until one day, when we were in reading class listening to a story, and I noticed my desk was a little off balance. It was squeaking. Then I heard a noise. I looked up and saw that your desk was squeaky, too! I mean, really?! You had to out-squeak me?! But I couldn’t help smiling, and when you started giggling, I did too.

The author and her friend as kids, posting outdoors in front of tree in neighborhood
Erin and Alysia in 2001

Our friendship began. And all of those “annoying” little qualities I couldn’t stand about you…well, they started to benefit me. I didn’t realize it at the time, but you were teaching me things I needed to grow into a successful adult.

Like when we worse strange outfits. Only, I wore mismatched shoes, and you simply wore fun mismatched socks. I didn’t know fashion (and let’s be honest, I still don’t), but your strange socks helped me to understand that it’s OK to be a little different.

As we grew older, we have stayed close. I was officially diagnosed as being on the autism spectrum in 10th grade. Rather than dissing me for some more neurotypical friends, you asked me questions to learn more about it. Then you figured out more ways to help me.

From taking me to the beach because I couldn’t drive myself there, to helping me clean my apartment; from helping me with my college homework to supporting my autism self-advocacy work, you (and your family!) have been there for me. We have talked things through so I better understand the world around me. Although I feel like you know me so well you could read my mind, even if we have misunderstandings, you remain level-headed and patient while we sort things out. This is a cherished gift for me as someone on the autism spectrum.

I could never thank you enough for accepting me for who I am, while still pushing me to do my best. Thank you for not leaving me in the dust when I was diagnosed, but sticking by me. As a result, I feel like we are taking this lifelong journey together.

The author and her friend this year, smiling and standing indoors near window
Erin and Alysia in 2017 (Photo by Peter Brown)

You are an awesome friend, and an amazing person.

Your friend,

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Starting a conversation — it seems so simple, right? If only it were that easy. Communication can be hard for me as an autistic person. Sometimes others interpret me wrong, such as if I look up to the ceiling and do my horse sound (a gentle vibrating exhale), others can interpret it wrong. Once, I did this and others interpreted it as me being impatient to get on the barrel, and my coach said “Do you want me to move this stuff off of this barrel so that you can practice? You just have to ask to get on the barrel.” I pretended to go along, and I got onto the barrel.

Talking on the phone is very hard for me. Because I cannot see the person, I cannot guess what they are feeling. The voice is also altered, so it can sometimes sound like a totally different person is talking to me through a rectangular screen with speakers. It also requires faster processing, because the person is waiting on the other end of the line. I process things more slowly, so this can be difficult for me. I avoid talking on the phone a lot because of these things. I also have high anxiety, so that makes it even more difficult to talk on the phone.

I am best at communicating through texting, emailing and writing. Communicating this way gives me more time to process what I want to say, and it gives me more time to process what someone is saying to me. I have started to communicate with my mentor, friends and family members through texting and emailing. My mentor has even said that I am communicating more than I did last year.

Conversations are really hard for me. I tend to just talk about my SIs (special interests) around friends and family members. Around others I don’t know well, I tend to be very quiet and I don’t talk much. Part of this is due to my high anxiety, and part of it is due to not knowing what to talk about. Obviously I can’t talk about my SIs a lot, because people don’t just want to hear about horses, autism and dogs all the time.

I try to go through conversations in my head, but they never come out of my mouth.

I feel sad sometimes because I cannot talk with others, because I struggle with starting a conversation and I have anxiety. I also sometimes get so anxious that I cannot make myself speak. This happened to me once with my mentor, and I had to explain that my anxiety made me not able to speak.

Yes, communication is hard, but I will keep working at improving my communication skills. I will take it one step at a time, and I know I have support around me to help me. It may seem like calling someone is a small thing, but really it is a big thing for me. When I have done it successfully, it is an achievement. I am autistic, and I can do things neurotypicals can do — it may just take more time and practice.

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Thinkstock image by Milan_Zokic

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