What It’s Like to Be a Guitarist With Autism

914
914

My name is Tom Bak and I am a musician and songwriter, and I have autism.

I was diagnosed with autism when I was 3 years old, and I have been playing guitar since I was 7. Music has always been a part of my life. My mom once said music was the only therapy I ever responded to.

I started performing in rock bands when I was 11 years old. I don’t try to hide my autism from my band, from the audience or from anyone. But having autism means I interpret, write and perform music in a unique way.

When it comes to performing sometimes I have to stand perfectly still to keep my concentration. If I move around while performing that can break my focus, and I’ll lose my place in the song. Standing still while I perform helps me maintain my concentration. The audience may think I am emotionless and stiff when I play, but this is just what I need to do to stay focused.

Sometimes when I’m performing it’s hard for me not to look at the audience.  Autism makes me sensitive to sensory input such as noise, people moving around and talking with each other. I try to just play through the noise and look at my bandmates to help keep me on track. But sometimes it’s really hard for me to redirect my attention away from the audience when I’m performing. One thing I can do that helps me avoid getting distracted by audience noise during a show is to focus on my guitar while I’m playing.

I started writing songs when I was 15. I’m lucky because my sister, Evee, and my best friend, Harrison, are a part of my band, and we work together to write new songs.

Tom Bak's band Bak Pak
Tom Bak with his band Bak Pak in Philadelphia

I’ll start a new song by putting together notes. I don’t really think about what the song is about. I just start by playing out notes and creating melodies. Before the song is complete, we have to take the melodies and lyrics and arrange them into the final song. Coming up with an arrangement for a song is hard for me. I’m good at thinking about the details but not the big picture of the song. I tend to think about details, such as how notes come together, rather than patterns when arranging melodies. However, songwriting is good for me because it helps me think about the meaning of the song rather than just the details.  his summer, my band and I recorded two new original songs.

Tom Bak performing at World Cafe Live in Philadelphia in 2016
Tom Bak performing at World Cafe Live in Philadelphia in 2016

I’m grateful for my band and the opportunities we have had to play in live venues throughout Philadelphia. I’m also grateful for the friendships I’ve made through music. Music has been an important part of my life, and I’ve learned so much from writing songs and playing live music with my friends.

I got started in music because there were people who were willing to give me a
chance. Any child with a disability who loves music should be given the same chances that I had.

The world needs more understanding of people in the autism community. People need to see that having autism doesn’t hold you back from pursuing your talents and following your dreams.

914
914

RELATED VIDEOS

JOIN THE CONVERSATION

Mom Creates Inclusive Birthday Party Venue, Pixie Dust, for Kids With Special Needs

86k
86k

All Raquel Noriega wanted was to throw her daughter, Ava, a birthday party the 2-year-old would enjoy. What she didn’t realize was how challenging it would be to find a venue that could accommodate a child on the autism spectrum.

Most venues host multiple parties at once, have bright lights and music blasting and are generally overwhelming, especially for someone with sensory sensitivities.

“In my search, I did not come across venues that suited her needs,” Noriega told The Mighty. “Like every other mom, I wanted to be able to go do fun things with my child and have a birthday party for her.”

Noriega eventually found a venue in Bayshore, New York, – Pixie Dust – which allowed her to tailor the party to her daughter’s needs. But she decided to take things a step further — to help other parents throw parties their kids with special needs could enjoy, Noriega bought Pixie Dust and began overhauling it as a special-needs-friendly party location.

“Our parties are customizable to each child’s needs and likes,” Noriega told The Mighty. “Every detail is thought and talked about with the parent during the planning process to prevent any meltdowns.”

Pixie Dust also allows parents to customize the party’s menu to fit their child’s dietary needs. “Most party places just offer pizza as an option,” she said. “We can customize the food menu for those with sensitivities to texture.”

 

The venue caters to all ages and offers gender-neutral parties as well. Some party themes include “Pixies & Pirates,” “Buggy Birthday Buzz,” “Butterfly Garden” and “Barnyard Picnic.” It only hosts one party at a time to make each child’s experience as peaceful as possible.

Pixie Dust also offers periods of “sensory play,” where parents can take their kids for an hour of play designed for sensory sensitivities. “Sensory Play focuses on stimulating children’s senses of sight, sound, smell, touch, balance and movement,” Noriega said. “We use a variety of fun and messy ways to make that happen.”

Sensory play periods are managed by a Pixie Dust staffer who is also a special education teacher and development therapist. To better serve her clients, Noriega is working on becoming a certified autism specialist and is hoping to start a support group for special needs parents on Long Island.

“We are definitely not a cookie cutter party venue,” Noriega said of Pixie Dust. “[We] are a judgment-free zone. We get it.”

86k
86k
JOIN THE CONVERSATION

When My Employer Realized I Have Autism

544
544

To disclose or not to disclose my autism to an employer has been one of the more challenging questions I’ve faced during my young adult years. For many on the spectrum, it can be a daunting task due to society’s general lack of acceptance of disabilities and differences.

The question of disclosure first came up for me during one of my first part-time positions working in New York City. I had accepted a research position with the responsibility of looking up different analytics for professional athletes and teams. Technology and numbers had become an asset for me. My job responsibilities, mainly plugging names and numbers into an excel spreadsheet, were clear and I didn’t feel overwhelmed.

I didn’t need any accommodations, and my first few weeks were going by very well. I had already made several friends and was feeling like a part of the team. Than one day my employer was listening to me talking about my volunteer work in the autism community. He than asked me a question that froze me completely…

“Why did you get involved in the autism cause?”

I blurted out, “I have autism myself, so I got involved to help people like me.”

My employer responded with a smile and said, “That’s awesome that you are volunteering towards the cause.”

His response left me ecstatic. I felt confident about disclosing to him after his positive reaction. Two years earlier, I came out to my peers in college for the first time about being on the autism spectrum, so I could become a disability advocate. Since then, whenever someone would find out that I have autism, their usual response would be, “I would never have known!” But I’ll never forget that day when my employer decided to appreciate my volunteer work.

My advice for those on the spectrum who are joining the workforce is to self-reflect on your strengths and weaknesses every single time you go into a new employment situation. As a motivational speaker, I share this message when I talk to employers about hiring and retaining employees with disabilities. It has given me the opportunity to talk to organizations such as American Express, JP Morgan Chase and Wyndham Destination Network.

When accepting a job, carefully read the job guidelines and see what accommodations if any you may need to succeed in that position. After that, figure out whether disclosing is the right thing for you. Whether you talk to your employer about receiving accommodations is an individual decision. If you believe you need them though, go in with confidence, because those accommodations will maximize your potential at your
workplace.

I hope you find something you love to do every day. People with autism tend to thrive when we are working with our key interests — but that is true of anyone. I’m doing something I enjoy, something I hope to keep doing my entire life, and I hope you can do the same.

A version of this post appeared on Kerrymagro.com.

The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

544
544
JOIN THE CONVERSATION

The Internet Is Loving This 8-Year-Old’s Illustration Explaining Autism

1k
1k

Cadence is on the autism spectrum, but autism is just one of the ingredients that makes her who she is, the 8-year-old from Queensland, Australia, explained in a drawing posted by her mother on Facebook.

In it, Cadence asks, “Why do people call Autism a label?… I don’t think that’s right. My label is Cadence. One of my ingredients is Autism.”

To further prove her point, Cadence compares her “ingredients” to those in a can of tomatoes.

According to Cadence’s drawing, a can of tomatoes isn’t just tomatoes; it’s tomatoes, basil, oregano and an acid regulator. Like a can of tomatoes isn’t just one ingredient, Cadence isn’t just autism. Cadence describes herself as a number of things “Autism, Organs, Bones, Blood, Clever cells, Caring cells.”

This isn’t the first time Cadence has had something profound to say about life on the autism spectrum. On her website, “I am Cadence,” Cadence’s mother shares drawings and stories written by the 8-year-old Past stories include “Autism Doesn’t mean I’m bad” and “Autism doesn’t make me special. It just makes me different,” in which she explains:

I don’t like it when people say I’m special. Special is an adjective. It means better or greater. I’m not better than other people. I’m not more important than my friends. Autism doesn’t make me special. It just makes me different. I’m good at some things. I’m not good at other things, just like everyone else.

Cadence’s drawing has been shared over 5,000 times since it was posted on Facebook. You can see Cadence’s drawing below.

1k
1k
TOPICS
JOIN THE CONVERSATION

10 Things ER Staffers Should Know About Autism

949
949

I’m autistic and also have a mental illness. I’ve had to go emergency rooms in hospitals a number of times. The experience has always been traumatic and unhelpful. I’ve experienced a lot of paternalism, been treated as if I’m a naughty child and invalidated in many other ways.

In some cases, these experiences have resulted in me avoiding seeking treatment for mental and physical health complaints, which in fact did require urgent treatment.

Autistic people — both patients and visitors — will be anxious and scared in the emergency room. Sometimes autistic people will be unable to speak or clearly express what they’re experiencing. 

Here are 10 things that could help ER staffers to assist autistic patients, visitors and support people:

1. Don’t assume autistic patients and visitors are being deliberately difficult. Autistic communication tends to be different from non-autistic communication, which can lead to misunderstandings, even when the autistic person isn’t in a highly stressful situation like accessing emergency health care. If we seem difficult, please do not assume we mean to be.

2. After their medical status is confirmed as not requiring immediate emergency intervention, ask the autistic person what they need, what they think would help and how you can assist. If their requests can’t be accommodated, explain this to them and the reasons why.  Some people may prefer to communicate via typing or facilitated communicate device, rather than verbal communication. If this is the case, find a way to accommodate their needs.

3. For autistic people, emotional, sensory and/or information overload can lead to a meltdown. The ER is often an overwhelming place. It has people coming and going, often with visible injuries, odd smells, glaring lights and confusing information. Being unwell enough to be present at the ER and having a meltdown is unpleasant for the autistic person and possibly other people in the ER who might be frightened.

The overload which leads to a meltdown can be addressed by decreasing the stimuli causing it. Often this can involve simple measures like explaining what’s going on as well as you can and providing a quiet space.

If someone does have a meltdown, trying to intervene will almost certainly exacerbate it. Leave the person alone. If you have to say something, stand back from the person and offer supportive, calm comments. Do not try to physically restrain the person or tell them off for their “poor behavior.” A meltdown is not poor behavior or a way to seek attention — it’s a response to overload.

4. Waiting for an indeterminate amount of time is stressful to almost all autistic people and any relatives with them. If an autistic person asks you how long they will wait for treatment or to be taken to a bed in the ward once the decision to admit the patient is made, they aren’t being difficult or pushy, they’re just anxious because they want to understand how long they will be there for.

Respond as accurately as you can. Even a little bit of information such as, “We are quite busy tonight, so it may be a few hours,” is more helpful than no information. This information is also useful to relatives waiting with the patient. They may choose to get some food or go home and sleep if it’ll be a long wait.

5. Some autistic people don’t have family, a partner or friend to support them and may attend the ER alone. Consider what they may be going through: They’re unwell enough to seek help in a hospital, which is probably not a place they would choose to attend otherwise. They’re in a situation that can be triggering, unfamiliar and scary. A staff member periodically coming up and asking them briefly if they’re OK or offering a hot drink can make a huge difference. This doesn’t need to be time consuming,

6. Many autistic people experience sensory issues and overload. Bright lights may be overwhelming, and unfamiliar smells, medical equipment making unexpected noises and undergoing uncomfortable medical procedures administered by strangers can be quite traumatic. Consider making some of the waiting room space and beds on the ward sensory friendly. This doesn’t need to be onerous and can simply involve using incandescent lighting in an area of the waiting room, screening off an area and providing fidget or sensory toys.

7. Medical staff should explain as clearly as possible to autistic patients what is happening. If possible, provide the likely duration for results of medical tests being returned. It’s OK to qualify these statements by saying the time may vary, but having some kind of ballpark timeframe and reason for medical tests and procedures can reduce anxiety.

8. Autistic family and friends may be highly anxious about the person they’re supporting.  Some practical measures to assist autistic friends and family of patients are quiet areas in the waiting room, somewhere to buy food since many autistic people are sensitive to being hungry, which can trigger stress or meltdowns, being given approximate waiting times and being told what’s happening as much as possible.

9. It may help to develop a tip sheet to provide to autistic patients and visitors, which includes information on the triage process, how to access assistance if overloaded, what the expected behaviors are in the ER, where to access Wi-Fi or charging points for devices and where to go to provide feedback or complaints. Staff training around autism can also be very helpful.

10. Consider having a supply of cheap items to reduce sensory overload available in the ER for patients and support people who need them: ear plugs, sleep masks (especially for those in ER overnight) and a small number of fidget toys.

Read a related story about a helpful phone app for people who can’t speak during an emergency.

With sincere thanks to Penny Robinson for her contributions to this article.

What’s a part of your condition you live with every day that others might not see? Explain what that experience feels like. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

949
949
JOIN THE CONVERSATION

To the People Who Think I 'Sugarcoat' Our Experiences With Autism

135
135

mom and little girl with autism at the pool Listen up, and please listen carefully. I have something important to say.

Or, don’t listen. Don’t read any further, if you don’t want to. Maybe you don’t care what I have to say, and that’s OK, too.

I’m speaking to all of you, though.

I’m speaking to all parents to children with autism who have chosen to share your journeys. I’m reaching out to all of you, who, after the day has long since taken every drop of energy in your reserve, dig even deeper to live the day all over again just to let someone else know they’re not alone. What a profound, selfless gesture it is to do so. Your unabashed honesty brings clarity to so many, yet you face scrutiny from other parents for not being “real” enough. I know this because I’ve been there, repeatedly.

“Too cute and sugarcoated” was one bit of feedback I received on a recent piece. “… don’t downplay its seriousness with hearts and rainbows” was another. I accept what I write will not resonate with everyone, but this was just disheartening. With that in mind, I’m going to offer an explanation in regards to the manner in which I choose to convey the messages I share. In doing so, I’m speaking directly to those of you who have chosen to pass judgment.

Just as my child on the spectrum does not fit into a particular mold, neither do I! There is no “one size fits all” manual for maneuvering through a life that includes autism. Therefore, there should be no expectation among parents in the same community in regards to what is deemed a “realistic” or “reasonable” outlook for a child’s future.

My daughter and I have a lot of less-than-stellar days. On these days, I have moments where I cry alone because I feel completely inadequate. However, hidden between those tumultuous moments have been some real moments of pride, inner strength, and pure joy. I write about these days, these experiences, as a whole. I don’t omit reality and write fairy tales as many have claimed. I do deliberately choose to focus on how these experiences have made me stronger and more capable. If that’s not your cup of tea, I accept that. What I do not accept is the notion that I’m misguided because the tone of my writing is too positive.

I have three children. Someday, they will undoubtedly plug their names, or mine, into a search engine. I want the results of that search to show them how much this experience has taught me as their mother.

The writing I choose to share is not “too” anything. It is my own. Writing is therapeutic. Just as it can cleanse the soul to vent, it can build confidence to write a positive message. I share my journey because I believe the lessons I learn may motivate others to push through. There’s nothing sugarcoated about it. My daughter inspires me, and I’m excited to watch her grow.

135
135
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.