Tag: health screenings

Working with Autistic Adults in Medical Settings

Monitoring blood pressure

Autistic people should be treated fairly at the doctor’s office. As an autistic adult myself, I’ve been treated well by some doctors and badly by others. Here are some tips for doctors, nurses, and other medical workers who work with autistic adults.

  • I’m an adult and should be treated like one. That means taking me seriously when I tell you how I’m feeling or what I need.
  • Sometimes the world around us can be really overwhelming. Things can be too noisy, too bright, or too rough.
  • Autistic people don’t all look or sound the same. We can be of any race, gender, age, or background.
  • Many autistic people like to be called autistic people, including me. That’s because we see it as an important part of ourselves. Don’t call me a “person with autism.” If you’d like to learn more, you can read this article about autism and language by Kate Ryan.
  • Some people can’t speak, but they can still talk to you in other ways. These ways include computers, tablets, letter boards, and other kinds of assistive technology. I do speak myself, but I know people who don’t.
  • You may need to break things down to make them more understandable. I don’t have a hard time with medical language, but some people do.
  • Autistic people still care about others, even though it may be hard for them to show it. There’s a difference between feeling something and being able to express it.

Keeping Colon Cancer Away

picture of a person colonKeeping healthy is important for everyone.  People who have developmental disabilities need to do the same things to stay healthy as everybody else.  This can be hard. Doctors and nurses do not always talk with people who have disabilities about staying healthy.  Doctors and nurses can be very busy fixing health problems. Sometimes they forget to try to stop problems before they start.

Why is staying healthy so important?

  • Because we feel good when we are healthy!
  • It is easier to stop sickness before it starts. It is harder to make sickness go away once we have it.

Colon cancer is a type of sickness that is very common in people who have disabilities.

  • Cancer is what happens when our bodies grow extra pieces inside that are not supposed to be there.
  • When cancer happens in the colon, it is called colon cancer.
  • Our colons hold our solid waste, or poop, until it is time to let it out of our bodies.

Colon cancer is very serious. It can:

  • Make you feel sick.
  • Make it hard to eat and drink.
  • Cause problems with using the bathroom
  • Be very painful
  • Sometimes, make you die.

There is some good news. There are a lot of things we can do so we do not get colon cancer. We can also get checked by a doctor or nurse to catch colon cancer in our bodies before it makes us sick.

First, let’s talk about preventing colon cancer. This means we will talk about the things we can do to keep from getting colon cancer.

  • The food you eat is very important to keep your colon healthy. Eating a lot of red meat like beef, pork, or lamb is bad for your colon. It is also bad to eat a lot of sandwich meat or hot dogs.
  • You can help your colon by eating more fruits, vegetables, and whole grains like oats, brown rice and 100% whole grain breads. Be sure to speak to your doctor before you make any changes to your diet.
  • Keeping a healthy weight, or not having too much fat on your body is also important to keeping your colon healthy. You should ask your doctor what a healthy weight is for your body. Also ask what kind of exercise you can do to lose weight or keep a healthy weight. Even if you are not overweight, staying active is important to keep your colon healthy. Any activity that is more than you usually do may help your colon stay healthy!
  • Our bad habits can be bad for our colons, too. If you smoke, try to quit. Ask your doctor what you can try to help you quit. There are special medicines that can make it easier to quit. There is a pill, a skin patch and a special chewing gum. If you drink alcohol, drink no more than one drink a day if you are a woman.  If you are a man, drink no more than two drinks a day.  If you drink alcohol every day, make sure you tell your doctor. Also tell your doctor if you plan to drink less or stop drinking.

Sometimes we can still get colon cancer even if we are healthy. There is good news, though. If colon cancer is found early, doctors can treat it before it has a chance to make us sick.

To catch colon cancer early, talk to your doctor!  Tell the doctor that you would like to know more about getting checked for colon cancer. Usually you start getting checked for colon cancer once you are 50 years old. If someone in your family has had colon cancer, make sure to tell your doctor or nurse. They should talk with you about getting checked for colon cancer sooner.

There are a few different ways that you can get checked.

  • The most common way is to have a test called a colonoscopy. The day before the test you will drink a special drink or take some medicine. This will make you empty your bowels, or poop. At the test you will be given medicine to help you relax and sleep. The doctor will look inside your colon with a small camera.  The doctor will look to see if there is any colon cancer. If there is cancer that is still small, the doctor will remove it. The doctor can also remove any small polyps. Polyps are pieces of your colon that look like they might turn into cancer.  This test should be done every 10 years. If colon cancer or polyps are found, you will need to have this test more often.
  • A sigmoidoscopy is like a colonoscopy. But, it doesn’t look at your whole colon. This test uses a small camera. It looks inside the lower part of the colon, called the sigmoid colon. Sometimes this type of test is easier for people to have. You do not need to drink the special drink or take medicine that makes you empty your bowels, or poop. You also usually do not need medicine to make you relaxed and sleepy. This test should be repeated every 5 years.
  • There is a new type of test called Cologuard. You do not need to drink a special drink or take medicine first. You can do this test at home. First, you collect a small bit of solid waste, or poop. Then you send it in a special kit in the mail. The kit checks your solid waste, or poop, for a change in a chemical called DNA. This change may mean you have colon cancer. Then you’d need to have a colonoscopy to check for sure. Not everybody can have this kind of test. You should not have this test if you have had colon cancer. You should not have this test if you have colon problems. You should not have this test if somebody in your family has had colon cancer. This test should be repeated every 3 years.

Maybe you have read all of this and you are thinking that keeping colon cancer away sounds like a lot of work. Or, maybe you are having a hard time deciding what to do first. The most important thing you can do is talk with your doctor! Tell the doctor that you would like to stay healthy and keep colon cancer away. Doctors and nurses love to help people stay healthy. Sometimes they just need a friendly reminder about checking for colon cancer!

For more information, visit:

The American Cancer Society


Colon Cancer Alliance



Oh, Behave!

Sometimes bad behavior is a sign of a health issue.  For many children with an intellectual ""disability (ID), the first sign of a health issue can be a change in behavior.  Sometimes people think the ID is the reason for the behavior.  And the health issue is missed.

Our Story: School Problems

I am the parent of a child with Down syndrome.  In fourth grade, our daughter’s teachers told us she had been struggling with behavior issues every day.  They said she was tired.  And they said she couldn’t handle a full day of school.  They said school was hard for her because she spent the day with peers who were not delayed.  She had problems for weeks, but they didn’t tell us.

Testing Reveals Tummy Trouble

Around the same time, our daughter had a triple-scope of her GI system.  The doctors wanted to know if she had celiac disease.  (Celiac disease causes the body to get sick when a person eats wheat.) Instead, we found out that she had very bad reflux disease (GERD).  The GERD made her belly and throat hurt a lot. Right away, she started medicine to reduce the amount of acid in her stomach.  And we changed her diet to remove the food that hurt her tummy the most.

At our next meeting with the school, we talked about my daughter’s behavior problems again. The school said they saw a problem every afternoon around 1 PM.

Putting It Together

At the meeting, we shared the “home update.” Part of the update included the results of the tummy testing.  We also talked about the changes to her diet that we were making at home.  One of the teachers spoke up.  “I guess we should stop letting her buy orange juice at lunch every day?”  And there it was.  We had our answer to the afternoon behavior problems.  Orange juice can increase painful reflux, and probably made her tummy hurt every day.

Figuring Out Our Mistake

We had all attributed her behavior to her disability. Low energy? We figured it was due to Down syndrome.  Feeling overwhelmed by the classwork, and the language demands of her peers?  That was caused by her low IQ.  The school was so certain that her behavior was related to her disability, and not a sign of something medical, that they let weeks elapse before bringing the problem to our attention.  As her parents, we did not suspect a medical cause either.  It was only luck and good timing that caused us to do the GI testing at that time, giving us the answer to a question we didn’t know we still had.

The Research

For people with intellectual disabilities, physical distress is often associated with changes in mood, mental status, and behavior, as a significant “setting event” (an event that increases the probability of occurrence of problem behaviors). (Gardner & Whalen, 1996;, Gunsett, Mulick, Fernald & Martin, 1989; Carr, Smith, Giacin, Whelan, & Pancari, 2003).

Despite the documented link between health concerns and problem behaviors, medical causes for agitated behavior may frequently be missed in people with ID because they are often poor reporters of their own health issues. (Charlot, Abend, Ravin, Mastis, Hunt & Deutsch, 2011)


When a change in behavior is observed, medical causes should be considered first.  This is true of all children.  It is especially true for children with ID.  Children with ID are often less able to share that they are hurting somewhere. And research has demonstrated that behavior problems due to health issues are missed in people with ID.  Their caretakers should first figure out if any behavior is related to a medical cause.

For more information about behavior issues that are not caused by health issues, the book Supporting Positive Behavior in Children and Teens with Down Syndrome contains a wealth of information. (David Stein, Psy.D., Woodbine House, 2016)

High Blood Sugar

Person testing their blood

As a future health worker, I am worried about how people with disabilities are getting sick with diabetes.

What is diabetes?

• Diabetes is a disease in which blood sugar is too high.

What can be done to prevent diabetes in people with disabilities?

  1. Have your blood tested.
  2. Be active every day.
  3. Eat healthy food.
  4. Use portion size.
  5. Have a healthy weight.
  6. Use medicine in a good manner.
  7. Do not smoke.
  8. Use sun protection.
  9. Improve your health literacy.

For more information visit these websites.

Health Care Professionals and Students Volunteer at Health Screenings

The success of the Special Olympics(SO) is dependent on the volunteerism of thousands of people who donate their time and energy to coach, guide and advise the athletes. In addition, Health care professionals and students volunteer to ensure the success of the FUNfitness and Healthy Athletes programs.

Health care professionals share expertise

The Health care professionals conduct health screenings as an essential part of the FUNfitness program. Doctors, dentists, nurses, podiatrists, physical therapist, vision and hearing specialists all donate their time to insure that Health screenings are done in a professional manner.

Here in Massachusetts, our FUNfitness team includes Deirdra Murphy DPT, Clinical Director; Ed Kostek DPT, Clinical Instructor and Nancy Davis DPT who directs and implements the FUN fitness screenings.

Getting students involved

The committed team includes both seasoned professionals and students in these various health professions.

Deirdra is on the physical therapy faculty at UMass-Lowell, where her students have consistently participated. Ann Golub-Victor, DPT is on the faculty at Northeastern University(NU), recruiting many students from NU who are also key to our program.

Goals for the programs

The primary goal of FUNfitness is providing education and service to the Special Olympics athletes. The Healthy Athletes(HA) program has a key goal of increasing opportunities for people with Intellectual Disabilities(ID) to access needed health services. There are many barriers to these services including the attitude of health providers unfamiliar with the needs of people with ID or who have no previous experience with people with ID.

Through FUNfitness and other HA screenings, we create a fun and welcoming service where health professionals meet and interact while providing necessary service. . . And through this effort they come to the realization that their current and future practice can and should include people with ID and other developmental disabilities. As one student recently remarked, “I didn’t realize this would be so much fun.”

This is also our opportunity to educate health providers that people with ID have significant health problems previously unidentified, such as a high rate of balance difficulty and muscle tightness. The result is a better understanding of the need to address these concerns and that we all have a role in advocating for better health care for people with ID.

Learn more

To learn more about the FUNfitness Program,  other Healthy Athletes Programs or possibly becoming a volunteer, contact George Kent, george.kent@specialolympicsma.org ,at 508.485.0986 ex. 215.

About the author

Jim Gleason is an Associate Director of the Shriver Center University Center for Excellence in Developmental Disabilities (UCEDD) and a faculty member of the UMMS Shriver LEND Program.Jim Gleason


Healthy Athletes Program Makes a Difference

Over the last 10 years, the Special Olympics Healthy Athletes program has provided health screenings to over 1 million Special Olympics (SO) Participants worldwide. Their testimonies tell the story of a program that has made an extraordinary impact.

Athletes share their stories

As a member of the Healthy Athletes Team, over the years I have heard many personal stories about the program. I remember speaking with one athlete who tearfully related how the Healthy Athletes (HA) Program saved his life. He spoke about going to the Special Smiles Dental screening where an oral cancer was discovered.

Others have received prescription eye glasses and goggles so they can see better. In fact, one young woman told me she didn’t know there was a line on the bottom of the pool until she received special goggles.

In Boise Idaho, I sat next to a local resident at dinner one evening and he was amazed at how well he could hear, having just received a new pair of hearing aids. He hadn’t been able to hear a conversation for over 10 years.

These may sound like extreme examples, but the HA program is also finding at least 30% of the athletes screened will need some form of education or intervention. For many, the result is a healthier lifestyle.

Athlete chooses healthy lifestyle

Yesterday I met with Colin Davidson, a Massachusetts SO athlete who participates in many sports including soccer, basketball, track and field, skiing, sailing and golf.  Colin competed in the U.S. National Games with his soccer team and at the Athens Special Olympics World Summer Games (2011) where his relay team won the gold medal; he also competed in 800 m and 1600 m events.

Colin attended the Dental, Vision, Hearing and FUNfitness screenings which he passed without finding any major problems. Yet he does feel he learned a lot about how to stay healthy.

“I eat better, drink water and milk and last year I worked out with a personal trainer to prepare for the Athens games,” Colin said. “All of this was very important for helping me to get to a healthier weight and stay in shape. Now I try to exercise almost every day and I feel better and more confident”.

A healthy outlook

When I asked Colin if he thought Special Olympics participants should attend the HA screenings, he answered,  “Yes, it will help you to be a better athlete.”

His further advice to everyone, “Never give up, and keep being positive in life.”

Next week be sure to join us as I share the experiences of health professionals responsible for the Healthy Athletes screenings.

About the author

Jim Gleason is an Associate Director of the Shriver Center University Center for Excellence in Developmental Disabilities (UCEDD) and a faculty member of the UMMS Shriver LEND Program.Jim Gleason

Special Olympics: Working to Promote the Health of People with Intellectual Disabilities

My name is Jim Gleason, I am a physical therapist and have been very fortunate to work in the field of developmental disabilities since 1976. Actually, I began during the summers of my high school and college years when I worked in recreation and direct support for people with disabilities at summer camps. On occasion I would be a lifeguard for Special Olympics swimming events or volunteer at track and field events where I saw firsthand the joy and sense of accomplishment that participants experienced.

At the same time we could see that athletes were running in ill-fitting shoes, or didn’t know proper ways to warm-up for exercise or stretch out their muscles.

Beyond sports

What most people don’t know is that Special Olympics is also a health promotion activity. In the 1990s, a local dentist, Steve Perlman, and other health professionals recognized that many people attending Special Olympics events were in pain; had untreated tooth and gum disease, could not see the finish line, could not hear the starting pistol, and had many untreated health conditions. Something had to be done.

Healthy Athletes Begins

Healthy Athletes (HA) was established to provide health screenings and education for athletes, families, and coaches and is now a major part of Special Olympics events. HA includes screenings for: dental, vision, hearing, podiatry, physical therapy, health promotion and health physicals. This effort is also an important training ground for health professionals and students to learn about the needs of persons with Intellectual Disabilities (ID) and advocate that all health professionals be involved in the health promotion of people with ID/D in their routine practice.

Screenings offered today

Here in Massachusetts we offer Healthy Athletes health screenings at the State Winter and Summer Games, and at many local events throughout the year. At the State Winter Games in the Worcester Area on March 10, 2012, we will be offering screenings at Auburn High School and other locations.

This program has helped me see both here in Massachusetts and around the world that there continues to be tremendous need to address the health needs of people with disabilities. Over the next month I will introduce an athlete in the program as well as another health professional who feel the program has made a difference in their lives.

Join us to learn more.

About the author

Jim Gleason is an Associate Director of the Shriver Center University Center for Excellence in Developmental Disabilities (UCEDD) and a faculty member of the UMMS Shriver LEND Program.Jim Gleason