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Guest post by Tracey Cohen, author of Six-Word Lessons on Female Asperger Syndrome  Socializing and social events are incredibly difficult and 'tricky' for many people on the autism spectrum including myself. We very much want to be included but are overwhelmed quickly - by the social situation itself as well as the very notion of attending. As a result, we often decline invitations and/or make very brief appearances which are often seen as standoffish; some even assume us to be arrogant. But such assumptions could not be further from the truth. In fact, what may appear to be a small 'token' effort is actually monumental and often a huge achievement for many of us on the spectrum.
Personally, I get much more exhausted from even a brief social gathering than from running dozens of miles. This does not in any way though mean that I do not enjoy or appreciate the opportunity and people; I just have to be careful to not take on much more than I can handle as I can be snippy when overwhelmed and I never wish to do wrong by anyone. So - please be aware that while we always value an invitation, should we decline or only stay briefly or be at a loss for words, this is not an indication of indifference, disdain or otherwise. Please try to be patient with us and do not give up. We care deeply but likely need to show our appreciation and friendship in ways that differ from the norm.
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Guest post by Autism Home Support Services
 Photo by Pixabay Guest Post by Dr. Greg Grillo of Dentably.com
Dental issues are something that most people experience at some point in their life. A lot of these issues can be prevented by practicing good dental hygiene. However, because of sensory issues, oral health for patients with autism can be difficult. I’ve been practicing family dentistry for 17 years and my staff and I personally work closely with patients and their needs. Each person is different, and we like to accommodate their specific needs the best we can. I like to make families aware of some of the common dental issues that occur in patients with autism so they can work to treat or prevent them. 1. Early or late tooth decay Tooth decay is a common dental issue that can happen to anyone. It’s caused by acidic damage to the tooth structure produced by bacteria that live in plaque and causes tooth pain. In patients with autism, some have difficulties communicating their pain which may make it harder to discover that tooth decay is happening. By finding a special needs dentist and making regular visits, tooth decay should be easily avoided and treated. There are many resources available to find an amazing special needs dentist. Your primary health care provider may have recommendations on dentists that specialize in working with patients with autism. Ask anyone you know with children or family members that are autistic. They may have some great recommendations for dental care. Going online is also a great way to find the right dentist. The American Dental Association is a great resource because it allows you to search for dentists by location and specialty. 2. Gingival overgrowth Patients with autism may suffer from Gingival overgrowth. This condition is an abnormal overgrowth of the gingival tissues. Gums affected by this are often tender, soft, red, and bleed easily. Effective oral hygiene practices such as tooth brushing and flossing can sometimes help with this condition. Having a great toothbrush can make having a dental care routine easier. A brush with soft, natural bristles may help with any sensitivity one feels when brushing their teeth. Sometimes an electric toothbrush with soft vibrations can have a calming effect when brushing teeth. Try out a few and decide which works best. 3. Severe, early periodontal gum disease Periodontal gum disease damages the soft tissue and destroys the bone that supports your teeth. It’s a common oral condition that can be preventable with proper care. You may notice symptoms such as sensitive, swollen or puffy gums and loose teeth. For those with autism who suffer from periodontal gum disease, it’s essential that they brush twice a day, floss, and visit a dentist regularly. This can improve their chance of successful treatment. Building a dental care routine can be difficult, especially if there are any anxieties surrounding it. However, it’s important not to give up. Figure out how to make it more enjoyable and stay persistent. Soon enough, a dental care routine should feel like second nature. 4. Constant teeth grinding, or “bruxism” Constant teeth grinding, or bruxism, especially over a long period of time, can put patients with autism at risk for even greater dental issues such as jaw pain and worn-down teeth. It may be difficult to break this habit, especially if the habit is anxiety related. Being patient and trying to break the habit is the best way to avoid any further damage. You may benefit from finding a distraction such as oral fidgets or other sensory toys to help lessen teeth grinding habits. 5. Pits, discoloration, lines, or other developmental defects in teeth Pits, discoloration, lines, and other developmental defects are common in individuals with autism. A pit is a small depression on the surface of the tooth mostly found on the teeth in the back of the mouth. The discoloration is yellowing or browning of the tooth. Lines are tiny fractures in the enamel that cause vertical lines on the teeth. These conditions are usually genetic, so preventing them is difficult. Luckily, there may be options for treatment. A simple teeth whitening can help lessen many of these conditions, but composite resin or porcelain veneers can also be used. The process for getting resin or veneers is usually a lot longer than standard teeth whitening. Discuss treatments with your dentist to find what will be best. Most people experience a dental issue at some point in their life. For patients with autism, it may be more difficult to resolve oral related conditions. Becoming comfortable with basic dental care and developing a good relationship with a special needs dentist can help to deal with any issues that you may face. The most important thing to remember is how essential it is to instill good dental hygiene practices from a young age for a healthy mouth for life.  by Lonnie Pacelli
The Israeli Defense Force (IDF) Special intelligence Unit 9900 is dedicated to everything related to geography, including mapping, interpretation of aerial and satellite photographs, and space research. Within this unit there is another, smaller unit of highly qualified soldiers who can detect even the smallest details—the ones usually undetectable to most people. These soldiers all have one thing in common; they are on the autism spectrum. Their job is to take visual materials from satellite images and sensors in the air. With the help of officers and decoding tools, they analyze the images and find specific objects within the images that are necessary to provide the best data to those planning missions. The IDF has also found that soldiers with autism can focus for longer periods of time than their neurotypical counterparts. This story speaks to me personally. My son Trevor was diagnosed with autism at age five. The only thing I knew about autism at the time was Dustin Hoffman’s Rainman character. Raising a son on the spectrum drastically changed my point of view on disability inclusion, seeing strengths through the challenges, and cultivating those strengths while accommodating the challenges. He’s a grown man today, living on his own, working, paying his bills, saving money, and building relationships. His strengths outweigh his challenges. The same reckoning with his strengths and challenges can lead to success with overseeing how an organization thrives, but how do you begin to ensure inclusion of disabled people’s strength in the workplace at scale with at an organization level? It has to start at the board and C-suite level. The Center for Disease Control and Prevention defines a disability as “any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions).” A disability can:
In 2018 Accenture published an outstanding research report entitled Getting to Equal: The Disability Inclusion Advantage. Some of the statistics in the report are eye-opening:
The Disability Equality Index (DEI) is a joint project between the American Association of People with Disabilities and Disability:IN (formerly known as the US Business Leadership Network). DEI’s primary goal is to provide a benchmarking tool to help companies assess disability inclusion policies and practices in six key areas:
Organizations complete a survey (DEI estimates between 30-40 hours to complete), send it into DEI, and receive an objective score on their disability inclusion practices and opportunities for improvement. DEI puts respondents achieving 80 percent or better on their website, with companies like Accenture, Microsoft Corp., AT&T, The Walt Disney Co., Capital One Financial Corp., and Boeing Co. achieving a score of 100 percent. DEI has an advisory committee comprised of corporate and nonprofit executives and advocates who advise on benchmarking topics and questions. While it’s a commitment to complete the survey, it gives an organization an honest and introspective lens into their culture, policies, and practices on disability inclusion and is valuable to help identify areas where an organization needs to improve. This isn’t fluff stuff. The Accenture report notes several tangible results of those organizations that embraced a disability inclusion culture.
As a board, make it a priority to work with the senior leadership team to understand your company’s disability inclusion position and ensure disability inclusion is baked into the culture, not just an add-on project. Here are three things you can do to get started:
Disability inclusion is not just a social responsibility buzzword meant to enhance reputation. There’s tangible business value to be had. As a board, your accountability is to ensure your organization is promoting a culture where the business benefits can be realized.  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. by Lonnie Pacelli
My fiction book, The Lawless One and the End of Time, has four main characters who meet at age 14 in Naples, Italy and all grow into globally-recognized figures. One of the characters, Bert Winn, was fascinated with history. He loved the concreteness of historical facts; they either happened or they didn’t. He met and fell in love with Laura, a math major he met in college. He graduated college with a Ph.D. in history and became an acclaimed professor. Bert and Laura married and had a son they named JT. The Winn family became internet celebrities and millions of people subscribed to their online video blog. Subscribers loved to hear their messages of fact, inspiration, and challenge. Their message? An unvarnished, inspirational view of life with Autism Spectrum Disorder. Bert started showing signs of autism at eighteen months with speech delay, difficulty maintaining eye contact, and a dislike for being cuddled. As Bert grew, he and his mother developed strategies for how to accommodate some of Bert’s sensitivities, such as a “beach ball kiss,” in which an imaginary beach ball filled space between them when they kissed hello and goodbye. Laura too had sensory issues, particularly with clothing fabrics. The two of them learned to cope with their sensitivities through the years, so they became normal for them. It also felt normal for their son, JT, to be on the autism spectrum. They didn’t view themselves as people to be pitied, but used the opportunity to help others understand the world of autism and how people on the spectrum could thrive just like anyone. Their story educated and inspired millions and gave those affected by autism hope. The story of Bert, Laura, and JT were heavily influenced by my wife Patty’s and my experience raising our son Trevor. He was diagnosed with Autism Spectrum Disorder at age five (the clinical diagnosis was Pervasive Developmental Disorder, Not Otherwise Specified or PDD-NOS) back in 1998. At the time, autism wasn’t well known and our only exposure to it was Dustin Hoffman’s character in Rainman. We had no idea what the future had in store for us as a family. Would he ever graduate high school? Would he drive? Would he have relationships? Through the years Trevor amazed us with what he was able to do and how he learned to cope with his autism. Today he is a college graduate who lives on his own, drives, works, and has an active social life. Yes, he has challenges that will be with him for the rest of his life. But we learned an important lesson with Trevor; the moment we underestimated him he proved us wrong. You may have your own perceptions of people with disabilities, whether it be physical (paralysis), cognitive (autism), present at birth (Down Syndrome) or related to an injury (amputation due to an accident). Your perceptions may be due to personal experience, observing a friend or loved one, or what you see in the media. Your perceptions may be inclusive or biased. Only you can decide. So, what’s your action? Educate yourself. Disability:IN, American Association of People with Disabilities, Special Books by Special Kids, Autism Speaks, Center for Disease Control and Prevention’s Disability and Health Overview, and Northwest Center are some great resources to help you better understand people with disabilities. Do your own web searches, just make sure the information you’re taking in is from credible sources. Take the time to learn more about disabilities and focus less on the “dis” and more on “abilities.” Oh, and if you want to learn more about Bert, Laura and JT’s story, check out The Lawless One and the End of Time.  by Lonnie Pacelli
Recently our son Trevor published a blog post entitled Every Oscar Winner for Best Picture, Ranked Worst to Best. In this post, he ranks, from 90 to one, each and every Oscar winner since Wings won the very first Oscar in 1928. Each winner is listed by the movie name, year it won, a picture from the movie, and a review summary. It took him three years to watch, review and rank the movies, which he did in addition to living a full work and social life. The ranking list, whether you agree with where they fall or not, is not only a fun read but is a major achievement for Trevor. A bit more on Trevor. He was diagnosed with Autism Spectrum Disorder at age five (the clinical diagnosis was Pervasive Developmental Disorder, Not Otherwise Specified or PDD-NOS). He has always been high-functioning with some social and communication challenges that typically accompany someone like him. Today he is 26, has a bachelor’s degree in Film & Media Studies from Arizona State University, lives on his own, has a job, and supports himself. He will have some challenges for the rest of his life, but as he gets older, he has become much more self-aware of his strengths and challenges. My wife Patty and I are incredibly proud of him. As I was reading through his movie rankings, something much deeper than movie reviews emerged for me. What struck me was the number of Trevor’s strengths that give him the ability to review, rank, and communicate the 90 movies, as follows:
Look at the above strengths. Most any leader would love to see a list of strengths like that in an employee. Couple these with subject matter training and you’ve got a vibrant, contributing member of the workforce. Another great example of unearthing strengths is the Israeli Defense Force (IDF). The IDF uses soldiers on the autism spectrum to scan visual materials from satellites and air sensors to identify minute troop changes. They found that soldiers on the spectrum can better focus and get less fatigued than their neurotypical counterparts. It’s a strength that fills an important security need. Take the initiative to understand how people with disabilities can contribute to your organization by doing the following:
According to Accenture’s research report Getting to Equal: The Disability Inclusion Advantage, there are 15 million Americans of working age living with a disability and only 29% of those participate in the workforce. It’s your responsibility as leaders to look at the strengths that exist in this vastly untapped pool and align them to the needs in your organization. Oh, and back to Trevor’s Oscar rankings, want to know what’s number 90 and number one? You’ll have to look for yourself 😊.  Guest Post by Robert Johnson Gregory’s story began when he was 3 years old and still not aware of what life would bring. He was diagnosed with a form of autism, which changed the life of his family. The final diagnosis for Gregory was that he would never be able to speak normally, go to school, or have regular daily activities. However, his family never gave up and today Gregory has a successful woodworking business.
After many battles with through medical institutions, schools, and life in general, one day Gregory found a new interest – woodworking. He met his grandma’s neighbor, Patsy, an experienced woodworker who loved it very much. They agreed to start woodworking lessons and this is how Gregory became a part of woodworking world. The lessons started slowly and modestly, with simple pieces, then the work transformed into manufacture and production. Gregory now has his own workshop, and created a website and Facebook page to promote his woodworking pieces. He began selling online, so after some time, his pieces became popular across Texas. Wood became his passion and also a way to keep his life in shape and not to be afraid for the future. The pieces Gregory works on vary from intricate designs on crosses to unique designs on Texas Mesquite, but also custom pieces for special purposes. Each day starts in the workshop and ends with at least one new piece. Gregory’s precision makes each work of art unique and beautiful. Gregory’s mother, Michelle, is thankful for his success and says, "It has helped his self-confidence and self-esteem and it gives him a purpose, which he has always wanted. He is happier, has less anxiety and worries less about what he is going to do with his life. He also keeps his mind and body in shape." Her words summarize Gregory's story. She believes that no matter about the condition or situation, the will and passion can make stones crack and mountains move. Gregory and Michelle hope to inspire anyone with any condition to be whatever they want to be. See the full interview with Gregory and Michelle.  Photo by Carter Sherline Guest Blog by Tracey Cohen. Originally published on The Art of Autism
“For as long as I can remember, my greatest loves, which is when I am most at peace, are running, especially outdoors, helping others and just giving back to our world if even in the smallest of ways. It was during my service as a United States Peace Corps Volunteer in 2003 that I ‘fell’ into writing, a process that partially occurs during my run. My effort to bring more awareness to the needs of the developing country I served has progressed in ways I never dreamed, including two books, numerous articles and frequent speaking opportunities all of which allow me to help and connect with others in ways never deemed possible. Fueled by the courage I muster on my run, it is my honor and privilege to inspire, educate and entertain in the challenging world we live.” – Tracey Cohen Six-Word Lessons on Female Asperger Syndrome and Six-Word Lessons on the Sport of Running |
Inspiration for Life with AutismThis 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. Categories
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- Six-Word Lessons on Growing Up Autistic
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- The Kindergarten Adventures of Amazing Grace: What in the World is Autism?
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- Blog
- 1-Minute Videos
- Meet Us
- About Autism
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