Archive of ‘Health’ category

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.

Tremor and smart phones


In this blog, I would like to discuss briefly three main issues.typing on a smartphone

  1. Define tremor, types of tremor, and diseases that may cause it.
  2. What is the importance of smartphones in the lives of people with tremor?
  3. How software helps people overcome shaky hands.

The smart phone has become an important tool for people. They help us talk to our families and have fun. The following are some ways smart phones can improve the health and lives of people with disabilities.

Tremor is an uncontrolled movement of the body. Some people call it “shaky hands”. Here are two types.

  1. Resting Tremor (RT) is part of Parkinson’s Disease (PD). In 2004, there were about 5 million people with PD in the world. There will be 40 million in 2020. There tends to be less Resting Tremor when the body is moving. Resting Tremor is worse when the body is at rest.
  2. Essential tremor (ET) is another uncontrolled movement of the hands. ET is the most common tremor. The World Health Organization says 4% of people are affected by ET. Essential Tremor is worse when the body is moving, and better when the body is at rest.

Other causes of tremor:

  • brain tumors;
  • side effects of some medicines;
  • caffeine; and
  • stress

Smart phones have become a tool to transmit and store data from people with tremor. They are also used to learn about tremor and to see how good a treatment is.

Below are some free apps with brief explanations:

  1. Lift Pulse App is available for Android and IOS. It can identify your tremor and measure its degree. You can set your baseline readings (on a normal day) and compare them with results from other days. You can find this app at:
    1. Lift Pulse App download link / Android version
    2. Lift Pulse App download link / IOS Version.
  2. Parkinson’s Central App is available for Android and IOS. It is a great free app for people with Parkinson’s Disease. It answers general questions to improve the lives of people with shaky hands. It gives information on health insurance and local resources near you. You can find this app at:
    1. Parkinson’s Central App download link / Android Version
    2. Parkinson’s Central App download link / IOS Version.
  3. Essential Tremor App is available for Android and IOS. It is a great free app for people with Essential Tremor. It gives you general information about symptoms and treatments. It lets you know about ET events near you. You can find this app at:
    1. Essential Tremor App download link / Android Version
    2. Essential Tremor App download link / IOS version.

Touch screens on smart phones could be a challenge for people with tremor.

Below are some helpful solutions.

Change the sensitivity of the touchscreen. Find Accessibility Options in Settings. Now you can adjust such options as:

  • Assistive Touch
  • Touch Accommodations
  • Switch Control
  • Keyboard Size
  • Shake to Undo

Review the options and play around with them to find what is best for your needs.

There are other free apps that would be useful as well. Also, many users with tremor prefer to use voice to text to overcome the challenges of tremor.

I encourage you to enjoy your smart phone, and not to let tremor hold you back.


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


When A Disease Has No Name


I am a patient advocate who works with people with medical problems and disabilities. When name tag with Hello my name is Undiagnoseda doctor diagnoses a person with a disease, it can be sad and scary. But, once a problem has a name, people can learn more about it. They can talk or write to others with the same problem. They can join groups or clubs for their disability. They can visit doctors and hospitals with special knowledge of their problems.

Sadly, some people never get a name for their disease or disability.

These people visit many doctors and hospitals. No one knows what is wrong. There are no clubs or groups for their illness. Doctors do not know how to help them. These people may feel very alone. They may be confused as to why doctors can’t tell them what is wrong. They may wonder if they don’t have a real disease or a disability at all.

Not finding a diagnosis happens a lot.

Most people do not know that some diseases have no name yet. Science and medical care are getting better every year. Still, there are many things scientists and doctors do not know. Scientists and doctors do not know every disease a person can have. Why is it some diseases or disabilities have no name?

How a Disease Gets a Name:

In the past, doctors named diseases for the problems they caused in the human body. If five babies were born with problems moving their legs, the doctor would say all five had the same leg disease. The name of the disease came from its symptoms.

Looking at Human Genes:

Today, some doctors still use old disease names from symptoms. But more doctors today want to know the true cause of a disease. To find a disease’s true cause, doctors look at our genes. Genes are inside our bodies. They tell the parts of our body how to work. We are born with our genes. We keep the same genes our whole lives. Scientists know that a problem in our genes will often cause a disease.

Finding a gene problem is the best way to name a disease.

Today, if five babies are born with leg problems, the doctor will test a little of their blood to see their genes. Even though all five babies have leg problems, they may not have the same gene problems. The babies will get different names for their diseases, if they have different gene problems.

When we can’t find a gene problem:

Sometimes, doctors cannot find the gene problem causing a person’s disease. This happens because humans still have a lot to learn about genes. We don’t know how to find every gene problem in the body. We don’t know why some gene problems cause diseases, and some gene problems do not.

When we can’t find a sick person’s gene problem, their disease has no name. A person with a disease that has no name is called undiagnosed. Today, many people with diseases and disabilities are undiagnosed. These people and their doctors are waiting for new tests to find their gene problems. They are waiting for scientists to learn more about their diseases.

Living With No Diagnosis

For a person with a disease that has no name, life can be hard. Insurance companies may not want to pay for the person’s care. Doctors in special clinics may turn the person away, until their disease has a name. Groups for people with disabilities and diseases may not let the person join. Undiagnosed people may end up feeling alone as they live with their disease.

Having no diagnosis can feel lonely or scary.

But, even without a name for a disability, people can find help. A special group of doctors and scientists work for the US government to study diseases that have no name. They work at the National Institute of Health (NIH). The NIH has a page with tips for people who are undiagnosed.

These can be found at:

 Another pace for undiagnosed people is the organization SWAN. SWAN stands for Syndromes Without A Name. SWAN is a group for people who have no name for their disease or disability. They keep a website at:

At the SWAN site people can share stories. People can find others who also have no name for their disease. They can find a place to be together and share their daily lives.

Working with each other, people with no name for their disease can find hope. They can work through their struggles, and support new medical research.

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)

Challenges in transition from child doctor to adult doctor


Doctor with young adultBackground:

I work with families who have young children with autism spectrum disorder (ASD). Parents interface with Early Intervention, public schools, and pediatrics. For a person with autism, age 22 marks the end of many childhood services. But autism doesn’t go away at age 22. One transition is the switch from child doctor to adult doctor. This can be a difficult task. Adult doctors often have little training in ASD. As a result, they may not be familiar with autism-related issues.

ASD service systems reflect the idea that it is a childhood disorder. Yet autism is lifelong. The rate of autism diagnosis is increasing. Children with ASD grow up to become adults with ASD. Our service systems need to catch up. We need to advocate for systems that better serve people throughout their lives. This includes better training for adult doctors. Recent studies show that adult doctors don’t have enough autism knowledge. The good news is that they seem interested in learning.1

Why is this important?:

  • Some health conditions maybe related to autism, or they may not  It is important for the doctor to know the difference.
  • People with autism may require unique needs for doctor’s visits.
  • Primary care doctors should be familiar with ASD services. This way, they can make referrals as needed.
  • Primary care doctors need to look at the big picture to provide good care. This includes things like housing, social life, family, and job. The doctor needs to understand how ASD impacts a person’s life.
  • A good primary care doctor can be an important advocate. He or she can help a patient access services.

How to find an adult doctor who understands autism:

  • See this list of doctors that serve people with ASD in Massachusetts.
  • Reach out to Autism Support Centers and local autism agencies to request help.
  • Find a doctor, at a teaching hospital, who may be more up-to-date with the latest research.
  • Contact the doctors’ offices and ask questions about their experience with ASD.
  • Refer to this healthcare toolkit, which provides tips on how to find the right doctor.
  1. Sarris, Marina. The Challenge: Finding Health Care Providers For Adults with Autism. Interactive Autism Network at Kennedy Krieger

Institute. 8 April 2016.



Choices.  Often, choices are good.  But sometimes, as a parent of a child with Down a cartoon figure on a path that splits into three possible branches, representing choicessyndrome, I must choose between two bad options.

My daughter is 13. In addition to Down syndrome, she has scoliosis, or a curve in her spine.  She also has sleep apnea, where the back of her throat closes when she sleeps.  Sleep apnea causes her body to wake her so she can breathe normally.  But waking up so much makes her sleepy all day.  The simplest treatment for my daughter’s form of sleep apnea is to sleep on her stomach to keep her throat more open and help her sleep better.  The treatment for scoliosis is to wear a Boston brace. It’s a hard plastic device that gently pushes on her rib cage to keep her spine from curving more.

But wearing a Boston brace and sleeping on her stomach together add up to a sleepless night for my child.  We work on it.  We try to add time in the brace.  We try to keep her from flipping on to her back as she sleeps.  But after weeks of waking many times a night for both of us, I’m right back to the newborn days of 3 AM feedings and 4 AM diaper changes.  My daughter falls asleep on the beanbag chair at school.  I nearly fall asleep in the car line for school pick-up.  No one is happy. Something must give.

We must make a choice between these two treatments, weighing the short term impacts and the long term impacts. Without the brace, the spinal curve may progress over time.  If it does, my daughter may need spinal surgery.  It’s a big “if”.  But wearing it means she gets a terrible nights’ sleep, every night, and so do I.  It feels too hard to weigh the choice between sleep now and the fear of possible surgery in the future.  But the immediate need for more sleep wins, and we ditch the Boston brace. 

We go for the sure thing -more sleep- and keep our fingers crossed that the curve in her spine doesn’t get worse.  It’s a terrible choice to have to make. And there are no do-overs, no second chances. My daughter now sleeps well, but I still toss and turn some nights, second guessing our choices. I worry about possible surgery in the future. I wonder if we tried hard enough to make it all work at the same time.  Did we make the right choice?

Being Parents




I am the mother of an 11 year old girl who has a developmental disability. My daughter needs lots of support. At the moment my daughter is stable, healthy and in a good school. Often times I think about her future and about her needs. I know I will be caring for her when she gets older. For me it is important that she receives good care. Also that she can be healthy and happy.


Parents caring for their children with special needs are very important. As parents, we have positive impact in helping our kids remain in their homes. We know what our kids need. We know what they like and what they wish. Our kids keep us positive. They give us energy every day. They make us happy when all is going well. Our kids give us lots of love.

Caring for ourselves

As parents we don’t count with much time. The most important things are our kids and family. Sometimes we forget about our own medical appointments. Going to our doctor may take us longer time. We are sometimes really tired. We need to try to make more time for our own needs. We need to try to go to our doctor’s appointments. Is important that we are well, so our kids are well too.

For more information

Caregivers resources

Animal-Assisted Therapy


girl with pony

girl with pony

As a mom of five, I have seen animals used to help people. The tests show that animals help people:

  • be healthy and happy
  • lower their heart rate
  • help heal faster
  • have hope and comfort
  • predict seizures.

Many animals can be used in animal-assisted therapy.  Dogs and cats are common.  Horses, goats, and dolphins are used too.

They are used in nursing homes.  Schools and doctors use them too.  The army and firemen work with dogs.  Animals work with people who have cancer as well.
For more information, please see:
Pet Therapy: How Animals And Humans Heal Each Other

Do you need help at home?


a person helping an older personAs a future public health worker, I want to learn more about programs that help disabled people. One of them is Adult Foster Care.

Who is eligible?

  • A person with a disability
  • Must be 16 years of age or older.
  • Can not live alone
  • Must need daily assistance with one or more activities of daily living for example: bathing, dressing or eating.
  • Must be approved by a doctor.

Do you have to pay?

The caregiver will receive tax-free money.
For more information visit Massachusetts Council for Adult Foster Care.

1 2 3 4