Guest Blog Post originally published by Learn from Autistcs, September 15, 2020
Tracey Cohen is an experienced ultrarunner, author, and speaker, and has competed in thousands of races around the world. She was featured on this blog last year discussing some of her experiences growing up undiagnosed, her current advocacy work, and her love of running. Tracey was diagnosed with Asperger’s Syndrome at the age of 39 and speaks regularly about autism to school groups and at conferences. She is the author of several books, including Six-Word Lessons on Female Asperger Syndrome, Six-Word Lessons on the Sport of Running, and the recently-released My Life on the Autism Spectrum: Misunderstandings, Insight & Growth. This week she shared how she’s been surviving the pandemic and the unique, personal nature of her new book.
How have you been doing during the pandemic? What have you been doing to maintain mental/emotional health?Though I know that I have much to be grateful for, it’s been hard. In 2018, an uptick in family health problems/emergencies caused me to make some added hard decisions including my employment situation. I felt I was finally starting to get back on my own feet when I began a new job at the beginning of 2020 only to be furloughed in late March due to COVID-19 and ‘forced’ to apply for unemployment.
Though I was assured by many that I had ‘earned’ (per my previous employment history) this and had nothing to be ashamed of, the kind words did nothing to assuage my humiliation and shame; I have always tried to pride myself on ‘earning my keep’ no matter the circumstances. I allowed myself a day or two to, what essentially amounted to feeling sorry for myself, before getting myself together and doing some good with the time and opportunity. In addition to the extra care I provide for my family, my days quickly became filled with a lot of volunteer work and tasks that were harder to take care of while working a full-time job. I also found time and inspiration to continue working on what is now my newly published book.
I find that no matter how difficult circumstances might be, I cope better when I am productive and helpful and establish some form of routine. Running, my lifeline among other things, has also helped me and though difficult at times, I have not missed a day. After a month or so after being furloughed and what appeared to be my dubious return to work continued to look bleak, rather than simply wait, I decided to take action and look for something new. Happily, I began a new job in July and remain cautiously optimistic.
Though all of the change, adjustment and additional challenges relevant to the pandemic and life in general continue to be difficult, some days more than others, my running, developing a routine, helping others and forcing myself to take action and move forward even on the most difficult of days is helping to preserve my mental/emotional health.
Photo credit: Martin Wooledge PhotographyYour new book My Life on the Autism Spectrum: Misunderstandings, Insight & Growth is described as “up close and very personal.” Can you give an example of how you expose yourself so candidly in this book?It is all very personal, and essentially everything I share are not topics that I discuss. Some of it, until now, including my time at the institution, are experiences that I have never shared with anyone, including my family. While I am willing to share such private information in order to hopefully help as many people as possible, it has been and continues to be a very painful process; essentially, I am and have been reliving it all which brings the nightmares and more (that have never gone away completely) on full force. I hope that people will understand and respect this for both myself and my family.
How is this book different from your others? While some of the information in my other two books are relevant to my own experiences, they were not written about me or my family and did not contain such private information. Also, while my previous books, Six-Word Lessons on Female Asperger Syndrome: 100 Lessons to Understand and Support Girls and Women with Asperger’s and Six-Word Lessons on the Sport of Running: 100 Lessons to Enjoy Running for a Lifetime are written in the format of and are part of The Six-Word Lessons Series (100 lessons, 10 chapters, every lesson and chapter title written in six words followed by a 40 – 60 word description), my new book, My Life on the Autism Spectrum: Misunderstandings, Insight & Growth is written in more of a free style form and also contains pictures throughout.
Why were you inspired to share your vulnerabilities so publicly? Since publishing my first book, Six-Word Lessons on Female Asperger Syndrome: 100 Lessons to Understand and Support Girls and Women with Asperger’s in 2015, I have had a number of requests to ‘write a book about my own life and experiences.’ Though I have never thought myself worthy, I genuinely want to help as many people as possible. After a great deal of reflection and analysis, I felt that I could possibly continue to help educate, inspire, and bridge the gap between awareness and understanding by sharing my story if I shared the personal details that readers will find in my new book; to write an autobiographical account without my greatest difficulties and vulnerabilities, would be disingenuous and a disservice to everyone I aim to help, educate, and inspire.
What’s something readers might be surprised by in this book? As I do not generally “read people” well and with there being all different levels of perception, knowledge, experience, and ‘flavors’ of autism, I don’t know what if anything will “surprise” potential readers. My hope (and intention of course) though is that those who choose to invest in my book and myself, will find value in my work. And what would please me greatly would be if readers find that their expectations have been exceeded.
Have you been inspired by other Autistic authors or advocates to tell your story or to live your life more fully? It was Liane Holliday Willey’s book, Pretending to be Normal: Living with Asperger’s Syndrome (Autism Spectrum Disorder), that, after first learning about autism, really gave me hope and insight about myself and set me on my path if bumpy, to learn more and eventually seek diagnosis. I am eternally grateful, and if I can do the same, even in part for others, I am willing to sacrifice my privacy and risk further judgement and humiliation.
Is there anything else you want to talk about that I didn’t ask? As people read my story, I am hopeful that all will keep in mind that no matter the misunderstandings and things that have happened in the past (and even in recent years and the present), I cast no blame on anyone nor do I have bitterness or the infamous “chip on my shoulder.” I care deeply about my family, friends, and people in general and am genuine in my efforts to help. While I do not see myself as any great success or otherwise, I have learned, made positive strides in life, and accomplished things I never thought possible. No matter people’s individual circumstances, they must believe that if I can do it, so can they. I don’t suggest anything to be easy, but I do maintain that every positive effort is worthwhile, no matter the outcome, eventually good things will happen. I further want people to know that I am grateful for their interest and support and always appreciate honest feedback. Thank you truly to one and all.
Tracey’s BooksMy Life on the Autism Spectrum: Misunderstandings, Insight & Growth
Six-Word Lessons on Female Asperger Syndrome
Six Word Lessons on the Sport of Running
Get in Touch with Traceytracey@growingupautistic.com
Tracey’s Facebook Page
Growing Up Autistic
-- by Trevor Pacelli
A decade ago around this time, my high school's drama club had its year-end ceremony celebrating the students' accomplishments throughout the year. At the end of that night, it was time for the club supervisor to announce next year's new officers. At that point, I had nominated myself to be the historian (or photographer), and prepared so vigorously to make sure I was seen as the right candidate for the job. I met with and shadowed the historian at the time, Louise Whitaker, wrote out my speech, gathered materials for it, and even dressed up to show how serious I was about it. To my absolute joyous surprise, after the supervisor said, "the Historian is…" he paused and said my name (albeit incorrectly). I walked right up to the stage to Louise, she congratulated me with the greatest of joy she ever expressed for me, and gave me this blue Styrofoam wand as a memoir of the torch being passed down. I was literally shaking with joy at this moment, this was a monumental achievement in my life that I still am so grateful about.
That summer, I worked with the other officers on fundraiser events and bought my own point-and-shoot camera for my historian work throughout the school year. Over that next year, I discovered just how much I loved photography, and was commended by others about my eye for the camera, and how hardworking I was as a club officer. Onward from there, I bought my DSLR camera after high school, and accomplished so much with it since then: I photographed various community events, church camps, took senior photos, engagement photos, proposal photos, business profiles, and even took a summer job as a photographer in North Carolina. Now, I've been able to use it to make my own cooking videos, proving that my journey as a photographer is continuing to grow, all because I worked hard back in high school for something I cared about. I went from a weird autistic kid desperate for friendships to someone with a clearer understanding of how friendships work. Funny how it all started with this silly little blue wand, but all that Eastlake Drama Club and its members did to help me grow and discover myself is something I will treasure forever.
Guest Blog by Jane Spitz, RoadwayMoving.com
Moving to a new home can be one of the most stressful and challenging situations in life. Aside from being a hassle, it can disrupt the way you live your life, especially when making some significant adjustments in terms of the new environment, neighborhood, and a lot more.
Thus, what is stressful and tedious to you is definitely more problematic to your autistic child. Since most children with autism need to adhere to a strict routine in a familiar environment, any deviation from that schedule, such as moving, can cause more anxiety and increased stress. Luckily, even if it’s impossible to eliminate all the fear a relocation might cause, there are ways to make the process much more comfortable for your child with autism. Consider these tips to make the move easier:
Talk About The Move
More than anything else, it’s crucial that you introduce the topic of moving with your child ahead of time. They need to be ready for what’s about to happen in the coming weeks and months.
For instance, announce the news a few weeks before moving day, making sure to highlight the positive aspects of a move to help ease his or her mind. Tell them that they might have a bigger bedroom and more chances to enjoy the things that interest them. Showing pictures and other visual aids will help them process the information better. In other words, try to make them excited about the change to reduce the anxiety and stress they have towards your upcoming relocation.
Keep Daily Routines Intact
In reality, maintaining some routines can be difficult when you’re busy planning a move. However, if you’re moving with an autistic child, try to keep their daily routines as much as possible so they have something to cling to for comfort when everything in your home is messy. Do your best to stick with their regular mealtimes, bed times, and other tasks they do every day.
On the other hand, if you don’t want to compromise the comfort of your child, hiring professional residential movers can be an excellent solution. Their services help you focus on keeping your child’s daily routines intact while moving professionals handle the challenging aspects of your move for you.
Have A Safety Plan In Place
Some children with autism tend to wander, making them susceptible to danger. Make sure any scissors, stacked boxes, and other packing materials are out of their reach. Also, keep the doors and windows closed throughout the moving process to prevent them from going out without your guidance.
Moreover, if your hands are full on a moving day, you can ask the help of a trusted friend or a relative to keep an eye on your child to help them stay away from potential chaos and hazards.
Prepare Comforting Items
As mentioned, most children with autism rely on things and behaviors that provide them comfort. Because of this, it’s a good idea to prepare a comfort kid for them when moving. It will be a great source of comfort when things get messy during the big day.
If they have toys, books, and electronic devices that comfort them, keep them handy. Also, don’t forget to pack some of their favorite foods so they have an added source of support during the relocation.
While moving to a new home can be an overwhelming experience, these tips will help your child cope with the changes. Lastly, even if you’re moving to a faraway place, you can also rest knowing your child will have a comfortable and less stressful moving experience with the help of moving services long distance.
Guest Blog Post by Dr. Steven DeLisle, DDS
A trip to the dentist can lead to some anxiety, even for adults. The process of regular dental cleanings and X-rays can be uncomfortable for children who aren’t familiar with them. Even more involved treatments like fillings are done more quickly and painlessly than most people expect.
But parents of children with ASD, know that a trip to the dentist is quite different. The unfamiliar location, people, sights, smells, and sounds can easily make a child uncomfortable and uncooperative. Many parents feel helpless when their child is at the dentist, not knowing what to do or how to help their child deal with the ordeal.
Below are six ways parents can help. Of course, you know the saying, “If you’ve met one child with autism, you’ve met one child with autism.” Since every child with autism processes sensory events differently, not all of these tips may apply to their unique situation.
1. Find a Pediatric Dentist that Offers Special Needs Dentistry
Although some dentists say they’re “kid-friendly,” this is often just a marketing tool. Unless they specify that they’re a pediatric dentist, they have not gone through the rigorous additional education and training needed to best serve children and young adults. Finding a true pediatric dentist will help your child receive the most comprehensive oral health care possible. Additionally, ask potential pediatric dentists if they offer specialized special needs dentistry. They may even have additional training, certifications, or references that can help with your decision.
2. Ask to Take a Tour Before an Appointment
To help prep your child for their visit, ask the office if you can bring your child for a quick tour before their scheduled appointment. If so, your dentist will walk your child through their upcoming visit, showing them the tools and the space. For many children with autism, this will help soothe and reassure them. It can also help you identify any possible triggers that could arise during the upcoming appointment. As you know, helping your child feel safe and comfortable will make the whole process easier later on.
3. Create a Visual Story
Consider creating a visual story to help your child understand exactly what will happen at the dentist from start to finish. Ask your child’s school if you can send the story to the classroom so that teachers and therapists can incorporate it into their lesson plans. Doing this the week before a visit could be a help in preparing your child for what’s coming ahead.
4. Use Noise-Cancelling Headphones
A dentist can help mitigate some of the sensory triggers that might cause difficulty for your child. Consider using noise-canceling headphones to play calming music that will block out some of the sound. Your dentist may also allow your child to use a tablet during their treatment. Just make sure the headphones utilize Bluetooth (you don’t want wires dangling around your child’s head!).
5. Consider Sedation Dentistry
Although sedation dentistry is not for every child, it is a pain-free option available for many children. It’s safe and can help your child avoid a potentially harmful meltdown. Have an honest discussion with your child’s pediatric dentist about the possibility of using sedation dentistry to help you make an informed decision.
6. Use the Power of Music
Although we all love music, there’s no denying that many children on the spectrum have a special bond with their tunes. Put together a playlist of music that your child loves to help soothe them when they’re at the dentist. You can either play it in their wireless headphones, or you can ask the dentist if they would be willing to play it in the office.
According to a University of Washington study, children with ASD are at greater risk than neurotypical children of oral health issues. Whatever you do, make sure you don’t allow your child’s fear (or your own) to keep you from providing them professional oral care. Help your child learn that the dentist is their friend.
About the Author | Dr. Steven DeLisle, DDS, specializes in sedation dentistry and has experience treating children with special needs. He is the founder of Children’s Dentistry in Las Vegas and Tooth Fairy Pediatric Dental. He was selected to join the team at Foundation for Positively Kids, a non-profit focused on treating medically fragile, foster, and special needs children at the Child Haven Dental Clinic.
Guest post by Don Lewis of AbilityLabs.com
Are you at your wits end with a child who won't sleep? There are many reasons children with autism may have sleep problems, from allergies to circadian rhythm disorders. These are some of the most common issues contributing to sleep problems in children with autism and how bedroom design can help combat them.
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.
Guest post by LighthouseAutismCenter.com
It can be a challenge for children with autism to stay active and healthy. Here are some activities and ideas for meeting those challenges.
Guide created by Lighthouse Autism Center
Guest post by Autism Home Support Services
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.
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.
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.