Erin Clemens showing librarians a picture communication book

What My Local Library Means to Me as a Person on the Autism Spectrum

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It had only been two years since I was diagnosed on the autism spectrum, and I had just graduated high school. I tried college, but it didn’t really work out for me right away. I didn’t know what I wanted to do with my life. I didn’t know what I could do with my life. So I started volunteering at my local library.

I had been a member of this library since I was about 2 years old when my mom first brought me for story time. So everyone at the library knew me pretty well, even though I didn’t really know them. I had never taken the time to get to know them. But when I started volunteering, things changed for me.

A whole world opened up for me. I had to learn how to take public transportation in order to get myself there. Then, when I finally got a car, I learned how to drive myself there. I was great at finding the books to pull from the shelves that people would place holds on. And then it went a bit further.

The people who worked there became my friends.

I learned how to be humble on my good days that I found all of the books that were requested and how to be OK with myself on the days that I couldn’t get them all. I also found books that I was interested in. Eventually, I even made them a picture communication book for nonverbal patrons! Above all, I learned I could do something with my life.

I could help others.

And although I now have a job and don’t have time to volunteer nearly as often as I used to, I still try to find the time to go in and visit my friends. And they are still more than happy to help. This is why I want to thank them.

Thank you to my friends at the West Chester Public Library. Thank you for providing me with a safe place to learn new skills. Thank you for understanding my challenges and encouraging me to overcome them. Thank you for supporting my goals and for helping me to achieve them.

Most importantly, thank you for going above and beyond your librarian duties.

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My Great American Autism Success Story

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My name is Louis Scarantino. I was born in the ’90s and diagnosed with autism at 2 and a half years old. I couldn’t speak until I was 5 and had an abnormal childhood. When I started school, my mom, along with a counseling center I went to for support, did many things to help me get to where I am today.

My high school life was tough. I was bullied by a special education teacher who didn’t understand me, as well as by a school principal. I got my first job in high school at a Burger King, winning Employee of the Month three times. Once, I attended an Elton John concert and unexpectedly landed front-row seats and an autograph. Those were my only great memories of high school.

I attended a community college 40 minutes away from home, commuting by car five days a week to better myself. I got all A’s and Bs, even though I was hard on myself most of the time and always wanted to quit. I finished in four years, got an award in my major of Office Information Technology, and graduated cum laude.

I became a big fan of country and pop singer Shania Twain through a college girlfriend. I dreamed of meeting Twain after college, so I attended a show of hers in Las Vegas in 2013, knowing some lucky fans were going to be brought on stage. During the show, she came into the audience to hug fans and shake hands while singing “Any Man of Mine,” and I got a hug. Later in the show, she called some fans to the stage. I went down from the 11th row and told Twain I was from Pennsylvania. She brought me up by saying, “Come on up here, Pennsylvania.”

I told the audience I had autism. Twain was shocked, but told me I was fine and gave me another hug. She took my hand and invited me to sit next to her on stage! She asked me my name before she sang “Today is Your Day.”

That moment made me more passionate about life. I now feel successful working as a Photo Tech at a DMV location. In that capacity, I’ve received three different honors, including a state award I attended a dinner for.

I hope to do many more great things on the autism spectrum and hopefully get a film made about my life. Anything is possible for anyone who has autism if you follow your dreams.

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'The Vault' Is a New Hotel Designed to Accommodate and Hire People With Autism

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Vacations are great, but traveling can be especially stressful for people with sensory sensitivities who require certain accommodations to truly enjoy their holiday. Enter The Vault, a new hotel in Gateshead, U.K., that understands the needs of the autism community and is prepared to make accommodations in a facility for and staffed by people with autism spectrum disorder.

The Vault, owned and operated by the St. Camillus Care Group, is one of the first hotels of its kind. In the United States, there are “autism-friendly” hotels and hotels committed to hiring people on the spectrum, but there are no establishments designed specifically for hiring or housing people with autism.

“The concept has been over a year in the making and stems from a shared vested interest in this field,” Darren Wilson, The Vault’s director of housing, health and care told The Mighty. Wilson, who has 14 years of experience working in adult social care and housing, works with The Vault’s managing director, John Heron – who has successfully run several businesses despite his own learning disabilities – to make the Group’s dream a reality.

“My driving passion is to offer people with autism and learning disabilities something different, but most importantly meaningful, that pushes the boundaries that have been placed around them by mainstream services,” Wilson said. “We are immensely proud of the trainees we have worked with to date and their dedication and commitment validates our overall plan for the business.”

The cornerstone of The Vault’s mission is to hire people on the spectrum as well as others with learning disabilities. “Our overall goal is to have potential employees assessed so that we are able to appropriately meet their employability needs,” Wilson said. These paid positions will focus on the different hospitality services offered by the hotel including computer literacy, art, design and those skills needed to work in a restaurant.

Trainees at The Vault

Each employee receives comprehensive training and support. “[Training is] important to us because we believe that people with autism can become outstanding employees,” Wilson said. “We want to build a service that showcases the outstanding but often hidden talent people with autism and learning difficulties possess.” Wilson hopes to train up to 28 employees through the program each year.

Rooms at The Vault are currently being revamped to accommodate the needs of those on the spectrum. While rooms are not available yet, Wilson anticipates guests will be able to stay at the hotel starting early this fall. In the meantime, The Vault is open to visitors who wish to eat at the establishment’s American-themed diner or visit their entertainment facilities – both of which make accommodations for people with special needs.

 

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What a Letter My Mom Wrote About Raising Me as a Child With Autism Means to Me

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When I turned 24, it really didn’t mean much to me besides knowing that in a year I could rent a car for the very first time. Two weeks later, I received an email from a parent in regards to helping her grandson who has Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS).

Maybe more than any of the other emails I had received before, this note was very detailed, asking several questions about topics such as early diagnosis, therapies, early childhood, how to approach the diagnosis, etc.

Kerry Magro with his mother, then and now

Even though I’ve helped answer questions before, I asked my mom to help assist me in answering this woman’s questions. What I received back from my mom made me realize it had been 20 years since I was first diagnosed at age 4. 

Twenty years of autism. 

It made me realize how much time had flown by and how I got to where I am today. I thought about the milestones I’ve hit: playing for my high school basketball team, being student council president, having a girlfriend, graduating college, becoming a motivational speaker, writing a book and, maybe most importantly, having a voice to be heard. Time slowed down for a bit.

This is what my mom wrote to the woman who was seeking advice about her grandson with PDD-NOS:

“Looking at Kerry today, I wish someone had offered me the inspiration and hope that he represents 20 years ago. And I can see why anyone would ask him how he got to where he is today. His PDD-NOS was severe. Although we didn’t know what PDD-NOS was at the time, they mentioned that some children were institutionalized, and that’s all I heard.

Kerry was our delightful only child who reached most development milestones like height and weight (except speech) until he was 2 and half years old. At 2 and half, he started to show extreme signs of sensory integration dysfunction, where he was afraid of a wide variety of sensory issues. Wind, rain, water, noises loud and soft were major issues.

There was a time when we couldn’t bathe him. Uneven surfaces such as sand or swings where he couldn’t feel the bottom below him were a problem. He was asked to leave two different preschools because they couldn’t handle him. He preferred isolation and wouldn’t play or participate with other children. He had delayed speech, limited pretend play, twirling and extreme difficulty with transitions and tantrums. He also had fine and gross motor delays. 

When I dropped him off at school in the morning, he would scream that he didn’t want to go in, and when I picked him up in the afternoon, I would have to drag him screaming because he didn’t want to leave. Once at home with a caregiver, he would scream at the top of the stairs, “Go away!”

Kerry was diagnosed first by Hackensack Hospital and then by Dr. Margaret Hertzig, the director of pediatric psychiatry at Cornell. Dr. Hertzig is a world-renowned expert in autistic and autism spectrum disorders. She watched him as he grew, marking improvement she observed. 

The Kerry you see today is not the Kerry I grew up with. We began occupational therapy (OT) at home with a pediatric therapist. OT continued at home until he was 7 as well as in school where he was in a multi-handicapped class. At 7, he began intensive physical and OT therapy at Hackensack Hospital where he did a lot of vestibular planning issues. He is seen privately to this day for OT/PT as needed by a local physical therapist.

One of the major things that worked for us was sports. Although he didn’t want to be around people, I got him involved in pee-wee bowling and then sent him to a JCC summer camp for children with neurological issues. The camp was wonderful in that they did a different activity every 40 minutes, and the forced transitions helped condition him a lot. The vestibular planning therapy also helped a lot.

Kerry started to respond to recognition, praise and rewards, and I ran with that. We have a million “great job” stickers, magnets and trophies. I also developed my own token economy barter system with him. If he would try something three times, he would get a predetermined prize (seeing a movie, an action figure, a game) that we agreed on. If after the third time he didn’t want to do something, I would agree to let him drop it. When he wanted to do nothing three times, it sometimes seemed interminable for both of us, but I kept at it and found a kid who loves bowling, soccer and basketball. T-ball was rougher with the coordination issues and was one that got dropped but not until the third season.

All this time, speech, physical and occupational therapies continued. He also took lessons piano at the house to help him out.”

To have this letter written out for me to read left me with so many emotions. Some of these things happened so long ago, I had no recollection of them whatsoever. What stayed with me, though, was the passion and love that came with this letter. No matter how many challenges were presented, my parents were always willing to go the extra step to help me, and today I want to live by that example to help others.

My parents are strong. They are saints. Without them, I have no idea where I would have been five years down the line let alone 20. I know I still have a long way to go, but one thing I know is for the next 20 years that I have autism, I’m not going to be sitting down. I’m going to fight, I’m going to serve, I’m going to commit, I’m going to conquer and I’m going to communicate for the better day for us now and for the future.

I wrote this blog post several years ago, but the lessons I’ve learned from my parents still rings true today. To all the parents out there, remember you are your child’s greatest advocate.

This post first appeared on KerryMagro.com.

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I'm Proud to Be Autistic

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​I’m Hayley. I’m 22 and autistic.

One thing that annoys me is when people assume if they know one person with autism, they know a lot about autism. If you know someone with autism, that’s great. But no two people with autism are the same; we all have different abilities, skills and personality traits.

I’ve had people say, “I know someone with autism and they don’t act like you.” Exactly, because we are two different people.

I try telling people that, but they don’t always understand.

From a young age, I knew I was different. I wasn’t keeping up with others with schoolwork, my spelling was horrible and understanding everyday things was hard. I started getting bullied in fourth grade, and from fifth grade until I left school in 10th grade, my life was hell. I was bullied pretty much every day, and I would bottle up my feelings for months until I would release them all at once.

I believed people who said they were my friends, and I gave them my lunch money, let them stay at my house, gave them rides and would go hungry to help them. But when I was bullied, they would turn and bully me as well. Then they’d tell me they were sorry, and I would believe them and forgive them time after time.

I didn’t understand my autism fully until I got to high school, and by then I hated it. I wished I was never born with it. I would wonder, why me? I just wanted to be “normal” and accepted.

My mother and I agreed that at the end of 10th grade, I would not be going to school anymore. I started working at McDonald’s and left school.

I had teachers tell me all the time I would never achieve anything with my life because of my disability. I used to believe them, but slowly, with the help of my family I started not hating my autism and myself. As time went by, I realized I actually wouldn’t want it any other way. I’m proud to be autistic. Yes, I have trouble understanding emotions and sarcasm and how others are feeling, but I’m OK with that.

I am Hayley, and I’m autistic and proud.

Having autism hasn’t wrecked my life. In fact, it’s made it better. It’s made me see how much of a individual I am.

I have achieved many things, including:

  • I got my license
  • I’m a lifestyle support worker
  • I share a rental
  • I have my own car
  • I found I have a passion for makeup and cosplay and photography
  • I pay my own bills, including car payments, electricity and more
  • And as of the end of last year, I started writing my own book about autism and have become a guest speaker about autism.

Don’t talk to me like I’m 2 when you find out I’m autistic. Don’t tell me how sorry you feel for me and how “brave” I am. And how I’m too “pretty” to be autistic.

People ask me why I tell people I’m autistic. It’s so they can understand me more, like why I might not look them in the face while they talk to me or while I talk to them. Why I can’t stay still. Why I cant understand sarcasm or jokes. Why I might not know what emotions they are feeling or showing. Why my anxiety is acting up or why I’m having a breakdown or meltdown.

So if you know someone with autism, please remember we are as human as you are. We have feelings, needs and dreams.

Don’t tell us what we can and can’t do, because we will prove to you we can do anything we set our minds to. And remember, no two of us are the same.

In June, I spoke at my first workshop in front of lots of people. In July, I passed a course on ADHD and autism with flying colors. I’m always studying and researching autism.

My story is ever changing, and I like that. It shows me how far I’ve come.

Follow this journey on Through My Eyes.

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8 Ways to Create Ease About the New School Year for a Child With Autism

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I still vividly recall the anxiety I felt years ago when the new school year was fast approaching for my three sons, one of whom has autism. Getting three children ready for school could create a lot anxiety, but many years have passed, and they’re now all adults.

Life has changed a lot since then. But some things may never change for a child with autism who may feel anxiety and uncertainty about a new school year. 

Through trial and error and life experience, I discovered simple ways that eased my autistic son’s adaptation to change. I practiced these throughout the years and still implement these as a mom and a teacher. I offer no guarantees, only that these ideas may ease your child’s willingness and adaptation on the first day of school and beyond. They’re worth trying. 

1. Create ease and predictability.

Begin to ease your child’s fear by taking your child on a field trip to school about one or two weeks before the first day. Introduce your child to her teacher and other school staff. Take photos of everything: the school lunch room, the hallways, locker, the classroom, the bathrooms, the cafeteria, including the lunch line, and tables. This will enhance your child’s familiarity and predictability within the school setting.

If your child resists going to the school for a visit, break it down even more. Drive by the school and take a picture. Try again another day by walking into the school. Oftentimes, the drive by the school is the best first introduction.

2. Offer your child an activity.

At home, arrange the school field trip photos into a scrapbook or on a large poster. Review with ease all the photos with your child.

3. Write a self emotional awareness (SEA) story. 

Write a story with your child about the school visit or imagine the first day of school. Start with lower emotions, such as doubt and worry, and work up to higher emotions, such as ease and enjoyment. Imagine the best and write about general things and emotions that may happen on the first day of school.

I offer this example:

“Once upon a time, Sarah was afraid to go to the new school. Every day she worried about the new school. One day, her mother said, “Sarah let’s visit your new school.” Sarah finds safety with Millie, her favorite dinosaur toy so she brought Millie with her. Sarah and Millie, both met her new teacher, Ms. Jordan. Ms. Jordan had a friendly smile and walked Sarah to a table where there was a puzzle with bright colors.

After saying goodbye to Ms. Jordan, Mom walked Sarah to the cafeteria and showed her where she will eat lunch with her class. Mom took lots of pictures. Because Sarah had many pictures to look at, she began to feel at ease. Because she held her new backpack and was able to gently touch her new uniforms, she and Millie began to accept them as new school belongings. Until finally, Sarah felt better about going to school.” 

Now you try writing a SEA Story with your child.

4. Create ease for your child by communicating with their teacher. 

Ask your child’s teacher to provide you the planned structure of the day and week. Provide that structure of activities in the form of a daily checklist or weekly calendar, so your child can experience ease in knowing what the day may bring. 

Talk with your child’s teacher about what your child’s likes and their strengths. 

If your child has limited expressive and receptive communication, provide the teacher with a list of their gestures or signing and the intention your child is communicating. Use a system of reliable tools to assist with communication like pictures, etc.

Also include the signs that show your child getting anxious. Offer the teacher a list of strategies that may bring ease to your child. Have the same list taped to the front of their notebook or backpack.

For example, prevent a meltdown by addressing anxiety. Offer the child a brief escape, quiet corner or area where they can cope and regroup. Perhaps offer headphone of relaxing music or a YouTube video to view calm nature scenes with animals. Or suggest assigning a peer student to sit with them to draw or color.

5. Create safety and predictability at home. 

Spend extra time with your child one to two weeks prior to the first day of school. Play at the kitchen table, draw, paint, play with modeling clay, while talking about school. Perhaps put on calming music to promote a positive atmosphere. 

Make cookies, lemonade and healthy fruit smoothies for enjoyment.  

Establish a bedtime ritual or routine. Watch a video or read a short story about forest animals or other interests your child may have. 

Establish a morning routine in getting dressed and eating breakfast in a quiet and calm home setting. Many children enjoy a visual image checklist to mark off tasks as they move through their morning.

6. Create predictability and positive expectations after the school day. 

Your child may look forward to activities that bring ease and rest, such as watching their favorite TV show or movie while eating snacks. 

Build upon positive emotions within home activities before school begins. Surround your child with a general ease and a pace that matches their preferences. Also draw upon physical activities such as walking in a park or riding a bike, since these can wash away stressful emotions. 

Read the SEA story you wrote and set it to pictures so your child will see school through a positive lens. 

7. Let your child feel your love. 

Most importantly, remind your children that they are good. Tell them they are loved and hug them many times a day. Tell them how well they are doing and how proud you are that they are doing their best. 

8. Lastly, remember to care for yourself. 

When you do your best to help your child adapt to the new school year, you’re their best advocate. Plan some individual time for yourself, so you can find general ease through this process. It’s important to care for yourself, so don’t deny yourself the nourishment, rest and activities you need and enjoy. Caring for yourself is the best care you can provide to your child during the transition to a new school year. 

These eight ideas are timeless and can be adapted and applied to a child, adolescent or young adult with autism. 

Lead photo source: Thinkstock Images

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