Category: Autism

“Autism Knows No Borders”

I am a public health researcher. My interest is in how disability Circle of children with the words Awareness and Acceptance in the middle.affects people all over the world. In the U.S., many doctors and teachers know a lot about autism. Every day we learn more about how to care for people with autism. We are learning to value their strengths. Many students with autism learn in regular classrooms. Many movies and books discuss autism. In the United States, autism is seen, heard, and talked about.

People with autism live all over the world. In many places, there is little known about it. In some cultures, there is not even a word for autism. Molly Ola Pinney started the Global Autism Project (GAP) to spread global awareness. She started it when she lived in Ghana, a country in West Africa. In Ghana, people often believe that evil spirits cause autism. Because of these beliefs, families often keep autism a secret. These families feel very alone. GAP aims to provide people with accurate facts.

Almost 60 million people with autism live in developing countries. GAP is building a global network of people who understand autism. It trains therapists, teachers, and families all over the world. It helps people create autism programs in their own cities and towns. The goal is to integrate people with autism in their own communities. Here are some real life examples of GAP’s work:

  1. Partnership with an autism center in the Dominican Republic – GAP in Dominican Republic
  2. Skill Corps in Kenya, January, 2016
  3. Teaching ABA Skills in India – What a difference a year makes: ABA in India

To learn more, see the Global Autism Project web site.

Autism Spectrum Disorder: The Gray-Zone

cartoon of a person with question mark

Butterflies. Anxiety. Sigh… What will their response be? Will they be extremely upset and not agree? Or will it make sense to them?

…Another not so clear-cut diagnosis of autism spectrum disorder (ASD).  Yes, I agree that his behavior was not typical for his age, but does it really fulfill diagnostic criteria?  Let’s see.  He has language delay… check.  He takes a long while to respond to his name… check.  Yes, but he does respond after the 6th time and was usually distracted with a toy.  I had to work to make eye contact… check.  Yes, but he was so interested in all our toys.  He would look at me when I got on his level.  Oh, he did point to request! Yea, but my colleague says that it was to meet his needs only. Ok, so he may have some delays in his social communication. 

Repetitive behaviors?  Well, he did flap and jump a few times when we brought out the bubbles.  Does that count?  Yes… check.  What about his restricted interests?  He did play with the cars, but what toddler boy doesn’t like cars?  Sometimes I did even get him to play with something else.  Well, he needed a lot of prompting for pretend play; he really only pushed the car and crashed it into other cars.  Repetitive play and restricted interests… check.  No reported or observed sensory concerns… no check.

Ok, so he was referred for evaluation for possible Autism Spectrum Disorder (ASD).  His Early Intervention (EI) team is concerned, but his parents aren’t so much.  However, he did score high on his Autism Diagnostic Observation Schedule (ADOS) and meets DSM-5 criteria. Then why are you questioning it?

“Why are you questioning it?”  This is a common query in my head.  Sometimes it is clear, but other times it is not.   Sometimes when you speak to his EI team, they may convince you that he has ASD.  However, the child may show interest in you and others that makes you question it.  Sometimes, he just seems like a busy kid that makes you work for his attention.  This may make you more concerned for early signs of ADHD.  Or you may wonder if it is just delays in all his skills, especially his intelligence.  If we really think about it, a child whose brain is younger than he is, may appear younger socially and need a lot of effort to get his attention. The reasoning often becomes circular.

As a new Developmental-Behavioral Pediatrician, I have struggled with this worry.  With each child, I find myself asking: “Are all toddlers who flap, toe walk, and take just a little too long to respond to your request really autistic? Or could it be something else?”  I have relied on my colleagues to help me answer these questions, but the question has not gone away.

Most recently, I read an article about some children incorrectly being called autistic.  Although the article suggested that “these children were less likely to be diagnosed by a specialist,” it did make me wonder if I am not the only one with these questions.  It also made me ask, could children that live in this gray-zone be called something else that we may or may not yet know about?

As the amount of children who are called autistic increased over the past 2 years, I began to wonder how many of those children fall into this gray-zone.  I wonder how many people are still in the gray-zone without any label.  I also wonder if I will ever be able to answer these questions without any doubt.

For more information about the article, please see: Autism May Be Over diagnosed in the United States

Genetic Testing for Children with Autism Spectrum Disorder (ASD)

young family talkingExperts are learning more each day about the role genetics plays in Autism. Sometimes Autism is caused by changes in a child’s genes or DNA. These changes can run in a family. Or, these changes can be new to your child.  A genetic test can help you learn more about these changes.

Why should children with Autism receive Genetic Testing?

•    Genetic testing can explain why a child developed Autism.
•    The test can help decide which services are best for the child.
•    A genetic test can help reveal other health problems in the child.
•    This test can help parents decide if they want to have more kids.

Genetic Testing does not tell you:

•    how a child will develop;
•    how well your child’s treatments will work;
•    who the parent of your child is; or
•    if you have HIV or have used drugs

It is not legal for your health insurance to change based on the results of this test.

A genetic test is often a blood test.  There are different kinds of tests. Your doctor decides which tests are best for your child.

To get Genetic Testing, a doctor can:
1.    order the genetic test; or
2.    refer a child to a genetics team

The genetics team are experts in genes. They can explain in more detail the genetic test and its results. Meeting with a genetics team is often helpful, even if testing is not done.

Many insurance plans cover genetic testing.  But, you should talk to your child’s doctor and insurance company before having the test.

Genetic testing can help children and their families. Talk to your doctor to see if it is a good option for your child.

To learn more:
Guidelines for Genetic Testing

What is Genetic Testing?

Autism Swim and Water Safety

Young child using kickboard and guided by a female swim teacher in a pool
Young child being guided by a swim teacher

When a child is diagnosed with Autism, the last thing parents are thinking about is swimming and water safety. But, there is information that tells us they should.

  • 9 of 10 children who die before age 14 do so by drowning.
    • National Autism Association, 2012
  • Drowning is a known danger for children who are 1 to 4 years old. The risk decreases with age for most children. For many children with Autism, the risk does not decrease with age.
  • Drowning is the number one cause of death for children with autism age 14 and under.
    • National Autism Association, 2012

Why are children with Autism at greater risk?

Many children with Autism are drawn to water. Scientists and researchers do not know why.

Running away from safe places is a problem for many with autism. This behavior stops happening around age 4 for typical children. For many children with Autism, it continues well beyond age 4.

Professionals rarely teach parents about the risk of children running from safe environments.

Language delays and sensory problems can make learning to swim difficult. Many children with Autism learn differently. What they hear may not be what is said. What they have to say may not be heard.

Sensory differences are also a challenge. Water temperature. Noise level. Touch. All can get in the way of learning.

Autism-specific swim programs are hard to find. Typical swim programs may not be best. Some children may need trained teachers. One-on-one teaching may be necessary.

What can parents do?

Manage the surroundings. Make your home safe. Use fences. Use door and window alarms. Consider a tracking bracelet for your child. LoJack Safety Net is waterproof and can be tracked under water.

If you have a pool, call a professional to help with making it safer.

Speak to your local fire and police departments. Be sure they know you have a child at a higher risk for running from safe environments.

Work with your ABA provider and/or school system to develop a plan at home and at school. Make sure plans are in place. How can your child be kept safe? What is in place to make running from safe settings more difficult? What is the plan if your child is missing? Ask your school or ABA provider to work on words such as “DANGER” and “STOP”.

Tell everyone who works with your child if your child is drawn to water. Identify nearby water sources. List them in your plan.

Helpful Resources

Autism Caregiver Support

Woman meditationing in a wheat field

Stress? Autism? Balance? Time.

Is it the techniques we choose? Or, is it the time it takes?

Is it possible? As a mom? To have balance? To manage stress?

As a mom to three children under 7, I am not sure. As a mom to a minimally verbal child with autism, I am really not sure. Things can get crazy. It’s difficult to step away from the stress. As caregivers, it is important that we care for ourselves. Easier said than done. When? How?

How can we take care of ourselves?

I think we all know that we have to do this. It’s the “how” that we all wonder about. How, exactly, do I care for a disabled child and take care of myself?
There are many studies that tell us that stress levels are high in moms of kids with autism. Still more tell us that if we manage the stress, we will be better moms. Caring for ourselves will help us care for others better. Okay. The question becomes how?

It’s about time…

A recent study at Vanderbilt University points to two techniques to manage stress. The first is mindfulness training. The second teaches a more cognitive approach. Both are led by peers. All well and good. I would love to try it. But, how are these people finding time? How could I possibly go? Researchers and policy makers are missing the point. We know how to care for ourselves. What we need is skilled, qualified care for our children. We cannot hire the babysitter down the street. The people that we hire require certain skills. Expensive, hard to find skills.

Do Researchers and Policy-Makers get it?

When will researchers and policy makers get it? Is it possible that just simply having time away has more of an effect on stress than the actual study intervention? I think it could. Imagine if an employer tried to work you like this? They can’t. There are Federal and State laws to protect employees. Not family caregivers.

    • 85% of 43 million family caregivers in the U.S. right now don’t receive any respite services.
      • National Alliance for Caregiving (NAC) and AARP Public Policy Institute, Caregiving in the US, 2015.
    • 4/10 adults in the U.S. care for a family member with severe health issues
      • PEW Research Center, June 20, 2013.
    • Care for the caregivers = More successful children. Happy healthy caregivers. Marriages. Siblings. All work to support the affected child. If the family functions well, the affected child will be better supported. A better supported child is more likely to succeed.

What can we do?

Lessons Learned from the Massachusetts (MA) Act Early State Team 2015 Spring Summit

”The Massachusetts State Team created a guidebook for Considering Culture in Autism Screening ”

I was an intern for Massachusetts Act Early this summer. This program works to improve autism screening in the state. I went to their Summit in June. There were 56 people from 7 states at the meeting. They discussed the role of culture in Autism screening.

Why talk about culture in Autism Screening?

People in this country are from all over. Some people just moved here. Sometimes they do not speak English well. Often, parents use other languages. The way a culture thinks about how a child grows may not be the same as American culture. So, doctors need to think about culture and language when screening for autism. If not, some children may not be screened or diagnosed.

The meeting involved a training on Autism screening. The training talked about culture. It included the following tips for doctors.

  • Think about the child’s background.
  • Provide screening tools in the child’s language.
  • Have someone translate if needed.

We talked about why it may be hard for a doctor to screen for Autism. We also talked about ways to help detect Autism while thinking about culture. I wrote a
report about the findings of the Summit (PDF).

To Learn More

Communicating With People Who Use AAC

Image of an AAC screen
Image of an AAC screen

“In this country we are justly proud of the freedom of speech, that we can say what we want. But I think there is an even more basic freedom than the freedom of speech and that is the freedom to speak.” Stephen Hawking

What is AAC ?
As a speech-language pathologist, I have had the pleasure of working with many children and adults whose developmental disorders or traumatic brain injuries have rendered them without a voice. As a result, many communicate with the support of Augmentative Alternative Communication (AAC) systems. AAC is a way to enhance and support communication in people whose existing speech is not functional. AAC can be:

•    High-Tech

  •     iPads;
  •     DynaVox;
  •     Tobii Eye Tracking; or

•    Low-Tech

  •     DynaWrite
  •     voice output; or

•     No-Tech

  •     picture books;
  •     alphabet system

Communication Partners
I worked with Jen*, a former patient of mine who used a communication book with words organized in numbered columns and rows. Jen was a fast user. I was a fast learner. I pointed to each column and row. She would raise her eyebrows to say yes or wiggle her lips to say no. We would eventually land on the target word (“Column 6, Row 2, Word: Hi”). Just as there are communication breakdowns in a speaking conversation, there are those in a conversation using AAC too. There were times when I moved through the columns or rows too quickly, and completely missed Jen’s signal. She would get frustrated. Or, maybe she was tired that day and her ambiguous raised eyebrows looked more like a muscle twitch. I would get frustrated. No matter how many breakdowns or how long it took, we had an endless amount of patience for one another. We were communication partners. We wanted to hear what the other had to say.
*Name has been changed

“And he’s Dopey…He never talks”
Too often I have opened a patient’s file and read ancient medical reports saying, “Patient was unable to respond to my testing questions…Patient is diagnosed with Mental Retardation”. Fortunately, we have come a long way from those archaic testing methods! We know that even though an individual cannot speak, it does not mean that s/he does not THINK (contrary to the classic fairy tale). Across my work, I have had the honor of meeting smart people, who just happen to also be AAC users. They have written books, presented at conferences and produced short films. AAC users have a lot to share with us as long as we are patient and willing to listen.

3 Helpful Tips When Communicating With an AAC User
1.    Remember to Pause. As I have discussed throughout this blog, patience is important, especially when communicating with AAC users. Be sure to provide enough pause time to allow the AAC user to respond to your question or comment.
2.    Face the Speaker. There is more to communication than speech alone. We communicate with our ENTIRE body, using facial cues, hand gestures and body movements. Make sure to face the AAC user while s/he is speaking so that you incorporate all those non-verbal cues and gain a better understanding of his/her message.
3.    Reduce the Use of Questions. There is a sense of pressure to be the one to ask the questions and maintain the conversation. However, questions tend to demand the AAC user to talk and can make the conversation one-sided. Instead, you can elicit a conversation by making comments.

Suggested Resources
•    I Raise My Eyes to Say Yes, by Ruth Sienkiewicz-Mercer and Steven B. Kaplan
•    The Diving Bell and the Butterfly, by Jean-Dominique Bauby (there is a movie too!)
•    Radiolab- Mr. Bliss: https://www.radiolab.org/story/257194-man-became-bliss/
•    Praactical AAC Blog: https://praacticalaac.org/
•    Augmentative Communication Program at Boston Children’s Hospital Facebook Page: https://www.facebook.com/ACPCHBoston?ref=br_tf

“The Power of Yoga”

A child in a seated yoga pose with his eyes shutIntroduction

Yoga has been a constant part of my life as I grow personally and professionally. It has been even more important as I find myself in a new city and on a new career path. I currently work in the field of autism and health services research. Recently, I took a yoga class that unexpectedly brought these two parts of my life together: yoga and learning about autism.

A Personal Story

My friend and I had taken this yoga class a couple of times together. It is a restorative yoga class, and the main purpose of it is to relax. In past classes, we had noticed that the teacher of this class was very thorough with her cues. She was also patient and thoughtful and had a very calming voice and presence. Near the end of the class, the teacher explained how much yoga has helped her as a person on the autism spectrum.
I was instantly struck by how brave she was for sharing that she has autism. At the same time, I was bothered that this felt inspirational. Sadly, the stigma associated with autism is such that someone may be seen as being brave for telling a group of people that she is on the autism spectrum. I admire this small, perhaps unintentional, effort to chip away at the stigma connected to autism.

Yoga for Autism

I am also amazed by the power of yoga. I knew about yoga practices for pregnancy, depression, victims of trauma, weight loss, and for those recovering from addiction, but I had never heard about yoga for autism. Based on what I know about autism, it makes perfect sense. Yoga focuses on quieting the mind and unifying the mind and body to bring peace.
Radiant Child Yoga is one organization that runs trainings for learning how to teach yoga to children with autism, ADHD, and different abilities. They believe that yoga helps children with special needs by:

    • activating calming hormones
    • giving children self-regulation tools by focusing on breath and movement
    • balancing brain hemispheres and improving mood
    • organizing and relaxing the nervous system
    • building self-confidence & self-affirmation

Even after ten years of practicing yoga, I am constantly reminded of the awesome power of yoga to clear the mind, open the heart, and strengthen the body. I believe the practice can truly benefit anyone and everyone and wish that yoga could be accessible to everyone who wants to try it.

For more information on this topic, please see the following websites:
Radiant Child Yoga https://childrensyoga.com/yoga-for-adhd-add-and-differently-abled-children/
Yoga Movement Therapy for Children with Autism Spectrum Disorder https://www.yogamovementtherapy.com/classes-workshops/yoga-for-children-with-autism-spectrum-disorder/
“Classroom Yoga Helps Improve Behavior of Kids with Autism” by Eliza Barclay https://www.npr.org/blogs/health/2012/10/12/162782583/classroom-yoga-helps-improve-behavior-of-kids-with-autism

Autism Insurance What to do if you receive a treatment denial No doesn’t always mean no

a soldier at a castle saying, News from the battlefield, sire. Out army was declared victorious. However, the Huns have challenged that ruling and it is currently under review….As a project director of the Autism Insurance Resource Center of Massachusetts, I work with families who try to get autism therapies covered by insurance. The good news is when a family finds out their insurance covers autism services. The bad news is when this same family gets a denial for the autism services they thought were covered.

What should you do if you receive a denial?

1.    Find out exactly what is being denied.
Make sure you know what service is being denied or not approved and why.

2.    Get the reason in writing.
If you get your answer over the phone, that’s not good enough.

3.    Request your claim file. This is free. These are your records the insurance company keeps about your insurance claims. Your insurance company has 30 days to send you your claim file.

4.    Request a copy of your insurance company’s Medical Necessity Guidelines.  These are free too.

What is medical necessity and what does it have to do with an appeal?

Most insurance denials are due to “lack of medical necessity”.
It is the standard used to decide whether a treatment or service is appropriate and effective based on the diagnosis. For example, pain medication would be considered an appropriate and effective prescription for a patient with chronic migraines. However, a prescription for an antibiotic would not be considered an appropriate and effective treatment for migraines. The insurance company would not pay for the antibiotic prescription because it is not medically necessary to treat the migraines.

How do I file an appeal?

1.    File your appeal in writing. This is absolutely the #1 thing people don’t want to do. No one writes letters anymore. But if you want any chance at winning an appeal, you are going to put your phone down and get on your keyboard.

2.    Write down everything and anything that is related to this denial; your insurance number and plan information, the date of service denial, the provider name and the treatment that was denied.

3.    Quote directly from the denial letter, state the reason used by the insurer (medical necessity is usually the reason) and explain why it is medically necessary.

4.    Be clear and provide references to your medical records.

5.    Include your doctor’s letter of support.

6.    Write a Personal Statement about your loved one and why they need this treatment.

How long does this take?

The insurance company must issue a decision within 30 days for a service that hasn’t yet been received and 60 days for a service that has already been received, but then denied. If there is a medical emergency, you can ask for a faster review. You will either receive a notice that your appeal has been approved or you will receive a denial of your appeal. Don’t give up.  NO may turn in to approved!

More information on appeals can be found through the Office of Patient Protection (OPP).   www.mass.gov/hpc/opp.
A Guide to Appeals can be obtained for FREE from Health Law Advocates.
www.healthlawadvocates.org

When You Need A Friend

happy young girls raising hands together in park.
Childhood friendship

Making and keeping friends is hard for anyone. This seems to become more difficult when people have a disability involving communication, the characteristics of which are “deficits in using communication for social purposes” or “persistent deficits in social communication and social interaction across multiple contexts.” Most kids can say they have friends in the neighborhood, school friends or church friends. For kids with Autism Spectrum Disorder or Social (pragmatic) Communication Disorder, developing friendships requires a lot of effort and provokes anxiety. It appears that the parents or teachers must make efforts to create friendships. I have been creating such friendship opportunities for my children all through their lives. When my daughter was young and attending an inclusion classroom, I called parents of typically developing children to arrange play dates for her. Some parents were really nice and met me half way by bringing their child to play with mine or meet her at the playground. I also called parents of the other children with special needs in the classroom. Those were the ones that happily met me all the way, for they were experiencing the ostracism that comes from having social skills challenges. Of course, that was possible as long as we were attending the local school. When my child was placed out of district, it became more difficult to have play dates and it required a lot of effort and strategic planning. Teachers had to be convinced of the need for friendships so that they would share our telephone number with a child that my daughter talked about at home. Then, we needed to call the parent, introduce ourselves, explain our situation and suggest a meeting place that was neutral and equidistant. Seeing a friend involved travelling, visiting, travelling and avoiding a meltdown.
Many times I questioned who really wanted the friends – my daughter or me? Did I want for her something that I thought all other kids had? Was she happy with one or two friendly acquaintances or did she need several friends? She is now an adult and still friendships continue to be hard. She needs help navigating the adult social world, where there are more unspoken conventions than in the children’s world. Participation in activities that are not located in our town means that she meets people from other towns and since she doesn’t drive, she needs transportation to and from meeting places. However, now that she is an adult, she can tell me that friendships are important to her and we make all possible efforts for her to see friends. That is something we can all understand as we all need friendships. What is hard to understand is that as children with disabilities become adults the opportunities that they have to make friendships with neurotypical individuals are almost nonexistent. There are programs organized by disability organizations to encourage socialization. Such activities are usually attended by people with disabilities and not many neurotypical individuals attend. Furthermore, those neurotypical individuals who do attend are often younger – they notice less the symptoms of socially and communicationally challenged persons, especially their lack of maturity. Yet younger neurotypical children do not serve as peer with age-appropriate interests. We must continue to look for opportunities to provide individuals with disabilities the opportunities to make meaningful social interactions in the communities where they live. I am not sure how to accomplish this but I think the Real Lives bill might be a step forward.