by Lonnie Pacelli
This is part two of How an Autistic Child has Changed a Career…For the Better
In 2006 I wrote of Patty’s and my decision to homeschool our son Trevor to help provide a learning environment more conducive with his autism. It’s now twelve years later and time to write about how things worked out.
Trevor started seventh grade with a customized schooling plan. Patty focused on arts and language and I focused on math and science. He also attended a homeschool-assisted school which provided English and math classes and attended a science class at the middle school he would have normally attended. The curriculum plan was designed by Patty and me along with Trevor’s school counselor. It was a hybrid of homeschooling and traditional schooling which we felt gave Trevor the best likelihood of success. Trevor’s counselor was completely awesome in working with us and putting Trevor’s well-being first. The blended teaching worked very well in seventh grade, but we also noticed that Trevor wasn’t getting enough peer socialization. In eighth grade we decided to start the process of mainstreaming him back into the public-school system. Patty continued focus on arts and language and math and science topics were now being provided by Trevor’s middle school. I like to joke that I was fired as a homeschool teacher and that my wife and son did the firing. In reality the mainstreaming was the right answer because it allowed him to get needed socialization through spending more time at school while also giving him some additional 1:1 focus through homeschooling. In ninth grade we felt Trevor was ready to be fully mainstreamed into the public-school system. While we packed up our homeschool materials, our involvement with Trevor’s schooling and socialization growth was still strong.
Ninth through 12th grade brought some high points but also brought a lot of struggle. Trevor was bullied and made fun of by many other students who took advantage of his autism. He had difficulty telling the difference between kids mocking him versus being a friend. Because he was behind his peers in his social interaction skills, he would say and do things that weren’t appropriate. He did have a few close friends who were genuine in their friendship, some of which he is still friends with today. One bright spot through high school was Trevor’s involvement in drama club. He participated in many performances both on stage and behind the scenes. The drama club was his “clique”, and while some in the club took advantage of Trevor’s autism, many accepted and looked out for him.
Trevor graduated from high school in 2011 with plans to go to college. Feeling that the jump from high school to a large university would be too drastic for him, he attended a local junior college for two years while living at home. He had developed a love for movies and photography, so he decided to major in film studies with an emphasis in photography. These two years were foundational for Trevor’s growth in that he continued to progress academically while also allowing him to work on socialization and adaptation skills. In his sophomore year he decided he wanted to transfer to a four-year university majoring in film and media studies. His decision on where to go was an outstanding example of decision making through empirical data analysis and pros/cons articulation. He developed a visibility board with a number of decision criteria including offering of major, closeness of family, and church offerings. He narrowed his choice down to two colleges, Central Washington University and Arizona State University, both of which meant he would be living away from home. He ultimately decided on Arizona State, comfortable through his analysis that this was the best option. It was also during this time that Trevor wrote about his experiences growing up with autism in Six-Word Lessons on Growing Up Autistic.
In August 2013 we took Trevor to the ASU Tempe campus, helped him set up his dorm room, and left him to start his junior year of college. While it was a bit unnerving being a thousand miles away from him, we had peace in knowing there were a number of family members in the area including Trevor’s big sister Briana who was now a nurse in nearby Scottsdale. His last two years of school were those of tremendous growth. He had to figure out a lot of things on his own, make new friends, and be responsible for his own studies. Fortunately, he plugged into a church group that was walking distance from ASU. He fit in like a glove and the church group was a high point of his time at ASU. He got to experience living and dealing with roommates, most of which he felt were too immature for him. We got several problem calls when he lost his wallet, had computer problems, or was having difficulty coping with some situations. He graduated from ASU in December 2015 Cum Laude with a degree in Film & Media Studies.
His post-college life was filled with a lot of anxiety. Now he was out of school and it was time to support himself. He didn’t have a job upon graduation, so Patty and I decided to hire him into our company as our Media Director. He was employed by us for 17 months where we got to help him build good work habits. We instituted a monthly review process called “dones” where at the beginning of the month he would lay out what he would have done by the end of the month, which we would then review at the beginning of the next month. It was an outstanding process in that all three of us were aligned as to what he needed to do, and he was held accountable for getting things done. In July 2017 Trevor was hired by Northwest Center where he splits his time between facilities management and marketing. His marketing assignments have been fruitful, including being interviewed by two local TV news stations.
Today Trevor is 26. He lives on his own in a condo we purchased for him along with two other tenants on the autism spectrum. He pays rent, he manages his own money, he is as self sufficient as any 26-year-old. He’s still got some challenges that he’ll continue to have for the rest of his life. He’ll always need someone else to help coach him through situations. It was a lot of hard work on all our parts, but Patty and I are excited about his future and are grateful that we were in a position to help Trevor.
Guest blog by Ashley Taylor of DisabledParents.org
Parents with autism spectrum disorder face so many challenges. They may have to overcome their sensory overstimulation in order to keep up with household chores or their children. People they encounter might place the burden of stigma on the parent as they misunderstand autism disorder. However, many parents find that their autism actually has some benefits. They have insight and are more empathetic toward their children when they struggle with emotions. Or they find that while they are caring for their kids they are able to “hyperfocus” on the little ones. The point is, parents with autism have struggles and strengths just like any other parent.
To make life easier, many parents with autism spectrum disorder find that modifying the home in certain ways makes it easier to move around and get things done.
Replace the Floors - If you have carpets, replacing them with hardwood, tile or concrete is a safe bet. Not only are they easier to keep clean, but they also reduce the risk of slips and falls for both children and parents. They are also less likely to sustain damage from unruly kids because they are strong and durable. Finally, hard surface floors contribute to better indoor air quality, which means less irritating allergens and triggering odors for parents with sensory processing issues.
Install Smart Lighting - Parents with autism may have a lighting system that fits their needs now, but those needs may change with kids. Smart lighting systems have many benefits for homeowners. They allow you to turn lights on and off remotely, which can save money on electricity when you forget to turn the lamp off before heading out the door. They can also make your home more secure as lights going on and off are a clear indicator to burglars that the house is occupied and therefore shouldn’t be targeted.
Smart light bulbs also tend to live longer, which is better for the environment. But for parents with sensory issues, smart lighting means so much more than saving money on electricity and light bulbs -- it gives these parents control over the visual stimuli within their environment. Smart lighting systems make it easy to go from natural light to sensory mood lighting that calms and soothes.
Make Bathrooms Safer - The bathroom is the most dangerous room in the house. The high humidity and slick surfaces are perfect for slips and falls. It’s easy to forget about the water temperature and end up scalding yourself. Furthermore, getting up and down to bathe or use the toilet becomes more and more difficult as we age. To make the bathroom safer for kids and adults alike:
Parents with autism face many struggles, but their disorder can also give them special insight that helps them raise healthy and happy children. To make life simpler, it helps to modify the home in certain ways to create a safe and comforting atmosphere. Hard surface floors are safer and easier to maintain, but they also keep the indoor air quality purer for less irritation. Smart lighting systems are an investment, but they save money and make it easier to create sensory mood lighting. Finally, the bathroom is the most dangerous room in the house. Adding grab bars, a walk-in tub, and anti-scald valves can keep bathtime fun and safe.
Ashley Taylor, DisabledParents.org
By Patty Pacelli
Human beings were made to work, and adults with autism are no different. Employment leads to a better mood, higher self-esteem, and improved physical health. It allows autistic adults to further develop their skills and understanding. Our son Trevor liked being around people and enjoyed the feeling of accomplishment at his jobs.
This is why it's important to instill the idea of working in autistic children as early as possible by expecting them to do chores around the house and outdoors, including them in volunteer work and asking them to clean and take care of their own room and bathroom or other space. As they get into middle school and high school, talk to them about what kind of job they might want when they grow up, and encourage their ideas, even if they seem unrealistic to you at the time.
Our son has gone through some challenges with having jobs and finding new jobs, but we have continued to encourage and support him, and have not given up. Keep researching and networking and doing volunteer work while job-hunting.
For more about the workplace and people with autism, see my book, Six-Word Lessons for Autism-Friendly Workplaces. I wish you the best in finding work for yourself or the autistic adult in your life.
Northwest Center of Seattle recently hired Trevor Pacelli, a young adult on the autism spectrum, and one of his duties is to write blog posts for the company. In this post, he has written about his experiences with his past jobs and the varying degrees of inclusion in those workplaces.
Northwest Center is a nonprofit company that " . . . was founded in 1965 by parents who refused to institutionalize their children with developmental disabilities or accept the prevailing notion that their children couldn't be taught. Banding together to form Northwest Center, they hired their own teachers to develop education programs targeted to special needs children." (NWCenter.org) Their mission is "to promote the growth, development and independence of people with disabilities through programs of education, rehabilitation, and work opportunity."
Trevor is thankful and excited to be working for Northwest Center.
By Patty Pacelli
Independent living is an important goal for young adults with autism, and studies have shown that it can lead to better employment success. The process can start early in life, and there are several things to help meet this goal while still living at home.
Your Child as a Roommate - During your child's late teens or early twenties, if still living at home, treat your student more like a roommate and have expectations of them as if they were living on their own, such as doing their own laundry, keeping their own room or space clean (or not), buying their own food and toiletries, and anything else that had been provided when they were younger. To do this, they will need an allowance or "salary" of some kind, which will help them learn (with your instruction) to manage money. Have them pay you rent, and at least some of their car or transportation expenses, and some of their personal purchases. Along with this, get them started with a simple budgeting spreadsheet to manage their bills, purchases, and even some savings. We did this with both of our children, regardless of an autism spectrum diagnosis.
Moving Out - When your child does move out on their own, give them a lot of encouragement to do things their own way, but be available to help them as well. Depending on your relationship and your child, you may need to back off a little more than you'd like, or you may have to force them to do more on their own. Our son was very excited to be on his own, and wanted to arrange his items in his new place by himself, but some young adults might be too dependent on their parents, and the parents might need to push them to do more on their own. We tried to find the balance between making sure Trevor was living successfully and keeping safe, while letting him do things his way, even if he made some mistakes or it wasn't perfect.
Living independently, whether in stages while still at home, or in their own place, leads to greater self-esteem, confidence, household skills, knowledge and comfort with social situations, especially when living with roommates. This leads to less stress and more confidence and ability to learn new skills in the workplace.
For more about autism and preparing your child for employment, check out my book, Six-Word Lessons for Autism-Friendly Workplaces - Patty Pacelli
By Trevor Pacelli
Far too frequently I get the idea that because I have slower speech and a lack of understanding towards other people, I can’t be of significant help to them. But this Memorial Day, I was proven wrong about myself.
You see, I was sitting on a park bench in a forested area near my home. All seemed fine, until I suddenly started hearing high-pitched screaming and crying. I ran over to see the source of the mayhem, and I saw two women who clearly didn’t know each other, one with two huskies, and one sitting on the ground, a smaller black dog held tight in her arms. I asked what happened, and they told me that one of the larger dogs had bitten the smaller dog on the neck. They told me to call 911, which I did. The problem though? These types of emergency services don’t help dogs. The woman with the larger dogs said that she would help out the smaller dog, but needed to go back home to get something. So as she was walking away, she shouted out her name and phone number to me before I could get a chance to get it right. By the time she was gone, the other woman, I’ll call her Kayla, realized that she was just trying to escape the situation. Then her injured dog, I’ll call her LBD (Little Black Dog), ran out of her arms and into one of the bushes, her front left leg clearly damaged. Kayla started to freak out, as she took it as LBD losing trust in her as an owner.
Kayla’s next mode of action was to take LBD to the pet hospital, which in our circumstance, was at PetSmart. She asked me to come with her as a witness, and I quickly said yes. I got into her car, and the whole time, she was still sobbing and panicking over thinking she was a terrible dog owner. I kept affirming to her that she did nothing wrong, from what I could tell from the situation. So after a drive that felt longer than it really was, Kayla brought LBD into the hospital wing of PetSmart. I sensed her trauma, so as we were sitting in the waiting room for the doctor to come and check up on LBD, all I did was pat her back to let her know that she was not alone.
Then the doctor came to check up on LBD, which meant he had to take her away from Kayla, definitely not easy for her to accept. Thus, we waited as they checked on the damage done by LBD, and at this point, I was mainly repeating to Kayla that she did nothing wrong, and that it would be unlikely that LBD would dislike her now. But Kayla was more concerned about LBD being able to go for walks, after facing such trauma with a larger dog. Then the doctor came out, and he told her that LBD had quite a bit of swelling and damage to her back and front left legs, and that they would have to take some X-rays. I decided it was good to ask how the trauma would affect a small animal like LBD, and I believe from what I can remember that he said it would likely be traumatic at first, but would heal over time.
At this point, Kayla decided that she didn’t need me around anymore, as she had called her boyfriend to come over and help her out. So she agreed to give me a ride home as she waited for the X-rays to develop. As we got into Kayla’s car, I then asked her, “Can I pray for you?” Now, I am of strong Christian belief, so praying is a part of my way of helping others in need. So I said a quick prayer for Kayla, and she drove me home. As she dropped me off, she was ever so thankful that I was there to help her. Later that day, I got a text message from Kayla (I gave her my phone number in case she needed my eye witness later on) giving the status report on LBD. She even texted me a video/status report that I assume she sent out to her other Facebook friends, of LBD on her car seat. I texted back saying I was going to continue praying for her.
I learned something very important about myself from all this. Just because I have autism does not mean I can never help somebody in need. Nobody has to do anything elaborate to help somebody else, it only requires giving your time to let somebody else know that they’re not alone. It’s not a matter of how good of a speaker I was, I understood the situation and knew ahead of time how to verbalize what happened, so talking my way through it just came naturally.
So again, autism does not mean incapable to love or show a random act of kindness. It doesn’t even mean a limited ability to help others. Anyone can aid anyone in need, all it takes is a simple reminder that we are not alone.
He never got bored talking about his areas of interests and could recall the minutest of details with ease. He could keep himself occupied for hours on end which in some respects made him very easy to care for. At the same time, letting him live in his own world without interaction wasn't good for his long-term social skills growth. Today I know more than the average dad does about Spongebob Squarepants, Patrick , Squidward, Sandy, Mr. Krabs, Plankton, and Pearl (Mr. Krabs sperm whale daughter).
Now I love watching movies, and I LOVE food. Given his passion for both, these are two natural connection points that we have together. One of our favorite movies is Men in Black. We've seen it many times over the years. In fact when the third Men in Black movie came out we went to see it together in the theater. Prior to the movie they had a MIB trivia contest. Trevor and I nailed the questions and came home the proud owners of black MIB t-shirts. We also love going out for breakfast, lunch or dinner together at places ranging from The Melting Pot to Costco for hot dogs. These are things that we both love doing together and as a dad I fiercely protect our time for these activities.
Do you see this as an area to work on? Here's a few pointers that may help you strengthen those connection points as well as help your child with socialization and exposure to new things:
I cannot express enough the importance of finding those connection points with your autistic child. While there have been struggles along the way, I am thankful that Trevor and I have those connection points where we are able to enjoy activities together and build upon the great relationship we have.
By Patty Pacelli
For children on the autism spectrum, start career planning as soon as your child starts developing interests. The elementary school years are perfect for this, but at least by age 14. Taking note of their interests, especially their passions, can help them pursue and cultivate them. If they talk about dreams that seem unrealistic, encourage them anyway. You never know what they will be capable of as they grow and develop.
Take their interests a step further by finding household tasks or volunteer work that will help them explore and develop their passions while learning good basic work skills and lead to independence and better employment.
For more about preparing your child with autism for the workplace, check out Six-Word Lessons for Autism-Friendly Workplaces, in paperback and e-book.
By Patty Pacelli
Parents should begin thinking about employment for their children on the autism spectrum when they are very young. Involving them in household chores, volunteer work and other projects will help prepare them for employment later on. Our son Trevor had weekly chores and took care of his own needs as much as possible, and as early as possible. He was choosing his own clothes, making his own breakfast, and getting himself up in the morning with an alarm by about 10 years old. By middle school, he was making his own lunch to take to school as well. He learned to take care of the cat, clean the bathroom and vacuum in elementary school as well. He found comfort in these weekly chores because of his need for routine and schedule-keeping. These tasks can help your child to become a dependable employee later on.
In middle school and high school, job-shadowing and other similar opportunities, such as volunteer work in different areas, are great preparation for people on the spectrum to start exploring what they might want to do for a career or a part-time job.
As parents, the more you can keep your child's adult future in mind and look for ways to prepare for it, the better. Find more about autism and work in my book, Six-Word Lessons for Autism-Friendly Workplaces. --Patty Pacelli
By Trevor Pacelli
I may land on the autism spectrum, I may have delayed speech development, I may be at times discomforting to talk to in person, I may get tired easily from being out a lot, but I still have proven that I’m just as capable as everybody else in working a satisfying career.
One month after I received my Bachelor of Arts in Film and Media Studies from Arizona State University, my parents offered me a position in their company to prepare me for a career. They had me start with my three primary areas of interest: photography, movie reviews, and my book I wrote at 19, Six-Word Lessons on Growing Up Autistic. Since then, these areas have grown into a website where I sell photos (trevorpacelliphotography.com), a blog where I write about autism lessons in your favorite movies (trevorsviewonhollywood.com), and talks I’ve done for schools and other groups around the Seattle suburban area to promote autism awareness.
The bad news is, not everyone understands this. A 2013 study by the Journal for the American Academy of Child & Adolescent Psychiatry says that only 53.4% of adults with autism aged 21-25 have work for pay outside the home.
It’s much harder for people on the spectrum to find work that both pays them well and utilizes what they’re capable of, as those types of jobs are limiting. What makes it harder is that many corporations value team players who are excellent with interpersonal interaction; which does not align with the heavily introverted traits of autism.
The mental health website Emaxhealth.com has listed jobs best recommended for anyone on the spectrum, which includes but is not limited to computer programming, engineering, designing, photography, accounting, and journaling. Or, if the worker is nonverbal, job titles including janitor, store stocker, or landscaper work out great. They do not recommend “people” jobs such as waiter/waitress, market trader, and receptionist. While limitations exist for more popular jobs, it’s not hopeless.
In fact, accommodations are everywhere to help those with developmental disorders find the right type of employment. There are hiring programs, including those that help you after you get hired. Now, these can go a number of ways: If there is any sensitivity to bright lights, you can ask to have the fluorescent lights in your work space turned down. If you are caught off guard by sudden schedule changes, the employer can know to give more advance notice of these changes. Most people on the spectrum love a predictable work environment, and employers are always required by law to make sure each employee is comfortable in his or her work space.
Once one with autism finds an employer where both the boss and worker can mutually cooperate, then the positive skills of an autistic worker come into play. A couple of key strengths than an autistic worker can use to benefit a business includes a hawk’s eye attention to detail, a photographic memory, passionate focus on a given task, and a vivid imagination. The journey to finding the right type of job is different for everyone, and everyone gets to the position of earning regular income differently and in varying amounts of time, but everyone is capable of doing it, no matter what it may appear.
And finally, here is an article about the Soldiers of Intelligence Unit 9900, who demonstrate the skills of autism utilized in a job that actually requires them to save thousands of lives.
Inspiration for Life with Autism
This blog has a variety of articles about people living life with autism, and topics and ideas that can help in the journey. Guest bloggers are welcome. Inspired by Trevor, a young adult film critic, photographer and college graduate on the autism spectrum.