Silhouette of man against sky at sunset

How I Felt Before My Autism Diagnosis

How am I different today than I was, say, maybe 30 to 40 years ago? I would say I am a lot more intelligent than I was when I was younger, though I am still making mistakes in life. But that only shows I am human like everybody else.

I am able to do things I never thought possible. I am able to live independently with a little help. I have lived in my own apartment for just about 12 years now. I can cook for myself. I do some of the cleaning of my place and do all the grocery shopping. I can go places by mass transportation, and I have a pet I adore. I am able to volunteer at two museums because I cannot work a regular 9 to 5 job because of a medical condition. I am a board member of a local autism society. I can take mass transit to places I need to be. I did not know how how to do this when I was younger.

I am a respected by my peers in our autism community. I have been to a couple of autism conferences in the last several years, plus I have been nominated by a well-respected person in the field of autism. This award I will be receiving in a couple of months is named after this person. There are so many ways I am different from when I was younger. I have found in the last couple of years that many of my former classmates from elementary through high school who found me to be “weird” and would bully me have now become my closest friends. They love and care for me, not for what I have but for who I am as a person. They have come to respect me because I have tried to teach them about autism because I do not want them to be afraid of people who are different than themselves.

Today I am proud of the work I am doing in the autism community. I forgot to mention I was made the leader of our autism support group. I am working to make this group a success. I believe many of these things I have spoken about would not have happened many years ago if it was not for the encouragement of my friend and mentor Georgia, the first volunteer leader of our group who saw something in me I never saw in myself: confidence in my abilities. I asked to find important people in the greater Harrisburg area to get our group’s voice heard. I am the group’s Chairman of the Guest Speaker Series. I am the one who goes out to find different speakers for our monthly group meetings. I have been doing this now for many years, and each time I get someone, my confidence grows and grows.

Now, how did I feel before I got the correct diagnosis? I think I felt “lost” because I did not really understand myself and what was going on with me. Originally I had a diagnosis of a learning disability back in the early 1990s. In my early youth and into my adulthood I was doing things not anybody else in my family did. I always felt like the black sheep of the family because of things I was doing. I look back now and see I did a lot of “strange” things. I did not get the correct diagnosis until years later, Asperger syndrome. It took me a long time to fully understand what this diagnosis meant.

I had two different main interests other family members did not have, and now I understand why that might have been. Now I am able to help other adults on the spectrum understand their diagnosis and answer questions they may have and help their families through this period of adjustment. My diagnosis has helped open doors for me I never really expected to open.

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Mother with her boy in baby carriage in the supermarket

Tesco Tests Weekly Quiet Hour for Shoppers With Autism

In partnership with Autism Parent Empower, U.K. supermarket chain Tesco has launched a six-week trial program to test a weekly quiet hour for shoppers on the autism spectrum and with sensory sensitivities.

The program, which started in January, is currently in its fifth week at Tesco’s Crawley, Sussex location. The sensory-friendly event is held every Saturday from 9 a.m.. to 10 a.m. and features dimmed lights, softer announcements and a staff educated on autism.

The trial program was coordinated after Jo-Ann D’Costa-Manuel, director of Autism Parent Empower and mother to a child with autism, reached out to her local Tesco to see if they would offer a quiet hour. If the program goes well, it will be continued and rolled out to more stores across the U.K.

“We’re delighted that Tesco is trialling an autism-friendly hour in its Crawley store,” Daniel Cadey, autism access development manager for The National Autistic Society, told The Independent. “Like anyone, people on the autism spectrum and their families want to be able to go shopping. But we know that many rely on routine and can find the often busy, loud and unpredictable environment of supermarkets disorientating and overwhelming.

Tesco is the second U.K. supermarket – Asda the first – to feature a quiet hour. In the U.S., Costco offered a quiet shopping event in December for autistic customers in East Peoria, Illinois.

Thinkstock image by danr13

Woman with jigsaw puzzle pieces on face.

The Pieces of Autism I Hid From the World

Chameleon woman – I’ve been doing it since puberty. Logically the next evolution for a “parrot child” is a chameleon – right?

When many of us were younger, it was thought autism was only found in boys — a gender stereotype that is still hurting us today. Some of us are missed completely or misdiagnosed with other conditions. Some go to the grave without knowing they are Autistic.

A few of us are lucky and eventually figure it out. When we discover the truth, it is as if a light bulb has gone off. Growing up, we felt alien but did not know why. Most days I thought everyone around me was “crazy” – having no idea how different our perspectives were.

Society teaches you to be a lady, have manners and be polite. Flailing about is very unbecoming of a young girl. We learn to hold things in. We read books and create art. We collect pretty things in our rooms, locking away our feelings.

Social pressure is huge on young women. Society expects you to be a certain way.

Over the years I’ve learned to fake it, but learning to play “normal” has taken years of practice, constant trial and error. It is still a character that tires me out and requires a lot of work.

Girls are pressured from a very young age, and perhaps “boys will be boys” could be one reason Autism is often more obvious in males than in females.

I was a tomboy, and I believe my autism was obvious until I hit puberty and became more aware of the ways I differed from my peers. At that point, I made a conscious decision to study my peers and fit in. It was a bit like a science experiment. The more I worked on this project, the less I felt like myself. But for the first time in my life, nobody was bullying me. I was happy to feel safe and kept up the act through high school.

After years of being fake, it was hard to even know who I was anymore. I felt ugly and dirty. It’s hard to explain, but just thinking about how fake I was (years ago) makes my face pucker. I don’t like that person and I pity her.

I’ve recovered from that, but diagnosis was a major part of my recovery. It explained so much. There were always little things I’d never listed, but if I did they would all say – autism. All the pieces of me that I hid from the world, the strange things – autism.

Chameleon woman. Invisible Autism. Anonymously Autistic. Nobody sees me struggling.

#SheCantBeAutistic #InvisibleAutism #ActuallyAutistic #AnonymouslyAutistic #AutisticWomen

Follow this journey on Anonymously Autistic.

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Bad date.

Why Understanding Consent Is Essential for People on the Autism Spectrum

Recently I read about a campaign on social media, which had caused some controversy, designed to teach young children about consent.  In weeks and months past, watching events unfold on the world stage, a common theme has been respect and relationship with others: how we interact as a species, decide others’ worth and how, accordingly, we treat them. The recent worldwide Women’s Marches have highlighted issues surrounding how those who hold the “power” dominate those they consider “other.” As such, much emphasis has focused on protecting rights based upon gender, religion, ethnicity, disability and sexual orientation.

As children and adults on the autism spectrum, we may occupy a different place in our heads. Consciousness is not consciousness as other people experience it. You live in a space that is not entirely connected to your physical self or the world around you. I’m not sure if this is due to sensory differences, but it’s a distant place and often the connection to self feels as though you are being towed around like a balloon by the physical entity you are connected to far below. Or perhaps it would be more accurate to say the opposite: you feel like a balloon, towing around the entity that anchors you way down there. You may feel entirely at odds with it, like a badly fitting sweater: either too tight, hemming you in, not letting you speak; or too loose, tripping you up, too loud, too bright, too scratchy.

Much of a day on the spectrum may be spent traversing planes of existence, being jerked to and from the reality of your body and becoming palpably aware you have returned from another place, rudely reminded by the shock of light and sound around you. Stimming can keep you in the room and aware of your surroundings. The tap of fingers or thump of a foot can maintain a connection between body and self, providing a reminder of ownership of the vehicle.

This distance and disconnection between body and self can lead to a lack of understanding of others. A child on the spectrum may not realize they have verbal communication problems or appear “different” because their internal life is so very different from their external world. Only as they become older will they become aware, often hyper-aware in the case of girls, of their differences from other people.

When you are so far removed from your physical self in daily life, other people may seem alien. They occupy a space you don’t, and when you struggle to connect to self, understanding what you look like and how you appear to other people can seem like a nearly impossible task. When you are caught on a plane between body and soul, you have to find a platform on which to project yourself and find a mutual ground. And it’s exhausting being out there.

Other people’s body language and communication is foreign, and it can be hard to understand that not everybody is honest, or means what they say, or has your best interests at heart. It is hard to understand that another person might hurt or harm you. It leaves you vulnerable, both as a child and adult, because although you don’t exist in the same space as them, you still desire friendship and communication. Autism does not mean you do not experience love or compassion or empathy. In fact, a person can be flooded and over-whelmed by compassion and emotion to the point that it becomes overwhelming and overloading. If all your senses were burning, would you not look away from the source of the flame?

The differences can affect physical relationships and the way we interact with others. Because of the variation in physical connection between our minds and bodies, there can be an altered perspective of what might be considered “attractive.” People on the spectrum can be less likely to consider the physical and more likely to have a “soul” connection as that is where they live internally. An initial attraction may be more likely to be based upon soul qualities and then in turn physical than the other way around.

It is not uncommon for children and adults to experience abuse, both verbal and physical and not think to tell anyone.  We may not understand we have a right not to be treated in this way. It can be easy to manipulate either a child or vulnerable adult on the spectrum into believing that abusive behavior is appropriate because we often don’t understand deception, dishonesty and manipulation. It can be very hard to understand lying, or the purpose behind the lie. In girls, who often mimic the behavior of others and spend their lives attempting to conform, there is an increased danger of them going along with something they don’t want to do because they believe it’s “what everybody does” and they just want to fit in.

In times when the degradation of women, minorities and the vulnerable becomes widespread, it is even more important to teach children on the spectrum (and on any other spectrum of disability) the principles of respect and self-worth. It can seem easy to want to protect and shield them. Perhaps it’s harder for some adults to view them as humans who will grow up to have sexual experiences than a child without their difficulties.

I believe there is a greater responsibility to arm these children and adults with the knowledge and communication they require to understand their value in the world. They are individuals with unique talents and perspectives. It is important to show them what physical respect in relationships is, how they should not be touched without their permission, what it means to be in a loving relationship and why another person may want to take advantage of them.

It is important to allow their questions and provide a safe haven of trust, so if they come to you and tell you something has happened, they know that you won’t blame them, or tell them they have always been naive and make it their fault. If the time comes that someone treats them in a way that hurts and confuses them, they will need a place to turn to so abuse does not become the mainstay of their life and allow their uniqueness and value to be drowned out.

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Woman in gray sweatshirt shopping for toys

What I Wish More People Understood About Toys as the Parent of an Autistic Child

A young autistic boy had been asking his parents for a doctor kit. While “shopping” on Amazon, he added about 50 of them to our cart. During that week, he had therapy appointments, so Mama told him she’d take him to Walmart. He couldn’t wait to go shopping for a doctor kit.

This little boy is 10. In many ways, he’s wise beyond his years, but in others, he’s still a kid at heart. The day came to go to Walmart. The boy was so excited. He chattered nonstop about getting his doctor kit and playing vet with his dogs and stuffed animals. When he and his mama got to the toy section, he stopped. Suddenly he looked sullen and even scared. “Mama, you go first,” he whispered. There happened to be sales associates on every aisle, and this little boy seemed like he felt embarrassed. At this moment, his mom had an idea about what was wrong.

She walked ahead and pointed out doctor kits when she saw them. He finally chose which kit he wanted. (It was between an all-pink kit or one geared for toddlers.) The boy whispered his choice to his mama, seeming like he felt too embarrassed to reach out and touch them or look them over. He was too nervous to carry it up to the register. But as soon as the little boy got into the car, he was ripping it out of the bag and proudly showing it to his daddy.

The toy doctor kits were on just two aisles, the baby toy aisle and the all-pink “girl” aisle. Now this little boy might know his family doesn’t judge him for the toys he chooses, but sadly, he might also know that others in the world can at times.

You see, it doesn’t matter if he wants something pink, or blue, or 50 shades in between the two. It doesn’t matter if the suggested age is 3 to 6 years, or older. In his home, there is no age restriction or gender stereotypes.

Let me put a spin on Lin-Manuel Miranda‘s touching words… A toy is a toy is a toy is a toy. It shouldn’t be genderized or limited to age (except of course for small pieces and kids who might put them in their mouths). Why can’t more people grasp this? Kids are kids only once. Their childhoods should be happy and magical and free of useless judgment.

Editor’s note: This story has been published with permission from the author’s son.

Follow this journey on A Legion for Liam.

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Thinkstock image by danr13

Temple Grandin

Temple Grandin Named to National Women's Hall of Fame

Dr. Temple Grandin, one of the greatest autism advocates of our time, has been named to the National Women’s Hall of Fame.

Grandin, a six-time author with a Ph.D. in animal studies, was diagnosed with autism when she was 2 years old and is one of 10 women to be inducted this year. Previous hall of fame inductees include Oprah, Sally Ride, Maya Angelou, Hillary Clinton, Rosa Parks and Eleanor Roosevelt.

“Honoring Dr. Temple Grandin in this esteemed group of women not only speaks to the power of her research and advocacy, but also her impact as a role model for young women everywhere,” said Tony Frank, president of Colorado State University, where Grandin teaches. “Early in her career, her determination helped her break into what was a largely male-dominated animal production industry, and she continues to serve as an advocate for women in the sciences, for young people with autism, and for anyone unwilling to let artificial boundaries stand in the way of their personal and professional success.”

Prior to this honor, Grandin was named one of Time’s “100 Most Influential People in the World” and was inducted into the American Academy of Arts and Sciences.

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