5 Ways Meeting Temple Grandin Changed My Life

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When it comes to celebrities in the autism community today, no name is bigger then Dr. Temple Grandin. A few years ago, while giving the opening keynote presentation at an autism conference in Memphis, I had the amazing opportunity to meet her. As someone who grew up as a kid on the autism spectrum idolizing Dr. Grandin, it was nothing short of a dream come true. While I thought meeting her would be enough, I soon after found out that I would also be having dinner with her every single night of the conference. It truly changed my life. Her perspective and her knowledge of the autism community were remarkable.

I wanted to write this blog in the hopes if you ever have the opportunity to meet Dr. Grandin, whether it is at a book signing, autism conference, etc., you will do just that. I could write a book on why meeting her changed my life (maybe I will someday), but for the time being, here are five reasons she’s changed mine…

5. Her belief in equal rights

While listening to Dr. Grandin’s keynote address at the conference, it was refreshing to hear her perspective on challenging our loved ones with autism. As much as our kids need services and supports, they also need discipline and routines. She believes at the end of the day, you need to treat those with autism as human beings.

4. Her passion

One idea that stuck out to me that Dr. Grandin said several times while I was with her was the fact that she thinks half of the programmers in Silicon Valley are on the autism spectrum. Dr. Grandin believes many individuals on the spectrum have great abilities. Every time she mentions this she does it with the knowledge that her own abilities have taken her very far. So she knows from experience that it’s possible for others.

3. Her humility

While many people with the amount of success Dr. Grandin has had could have a bit of an ego, she is very humbled. Her humility, along with the respect she gives to the people around her, is astounding. When she speaks, she rarely mentions her own work and always provides resources to help benefit the community.

temple grandin and kerry magro

2. The “stretching” method

One of the key phrases Dr. Grandin has become famous for is the need for us to “stretch” ourselves and our loved ones with autism. Like an elastic band, she says, you can’t stretch it too far or it will snap. You need to be mindful and stretch your loved ones or yourself to their or your own capabilities. It’s a constant reminder that progress, no matter how big or small, should be an ultimate goal.

1. Finally… the hope she gives our community

In my opinion, the biggest attribute Dr. Grandin brings to our community is her overall success in her field. Many of the attendees at this conference were parents of young kids on the autism spectrum. Hearing her stories of success and what she’s done with her life has given every family something to strive for. She truly exemplifies that there are wonderful possibilities out there.

Dr. Grandin gives me hope that I can also make a difference in the autism community as she has done. Even though I’ve only been speaking
professionally for six years while she’s done it for decades, I hope one day I can make the same lasting impact on our community that she has. For that and for all that she has done for our community, I will be forever grateful to her.

A version of this post originally appeared at KerryMagro.com.

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Why I Forgave the People Who Bullied Me Because of My Autism

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Living with autism has been a positive journey for me. I feel as though my autism is a gift that I can share with the world.

However, not everyone understands it, and they can turn to the last resort that nobody should go through: bullying.

Being bullied for being autistic can really do damage. I know when I went through it, I would just cry and cry, and I would feel severe pain throughout my body.

As I’ve gotten older, though, I realized I’m not the problem. It’s those who feel the need to bully me for something that’s a part of me.

But then I also got to thinking how sad those people must feel if they have to be so mean to me and others with autism. So guess what I did to those who bullied me? I forgave. I noticed when I decided to forgive those who were cruel to me, I felt free. It was like a weight was lifted off my shoulders.

Even though what they did to me was awful and, at times, damaged my confidence, I forgave them because I needed to be free. One of my challenges with being autistic is I get really upset when I feel threatened, and it takes time for me to bounce back from it.

But as I found forgiveness in my autism journey, it has made me a stronger person. To those who may be getting bullied because of your autism, my advice is to forgive and never blame yourself. You’re not the problem. It’s the person who is bullying you who is the problem. They’re going through something and are taking it out on you.

Never be ashamed for being autistic. It’s a puzzle piece of your life, and it can teach the world how amazing you are.

And forgive the bullies because it will set you free.

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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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