Category: Autism

Earlier Diagnosis of Autism Matters for African American

man with child
Cultural beliefs may play a part in diagnostic disparities.

The Diagnosis…

I try to remember when my son began to lose words.  It seemed like I always knew how to reach him.  I mean, yes, he had tantrums.  He was a baby; you know? Besides, he was a boy, aren’t boys a little slower to develop?  And his older brothers are quiet…we all are.

When my sister-in-law approached me about his development, I was stunned.  Of course he talks.  He talks all the time.   At least that is what I heard myself say.  Didn’t he?  The more attention I began to pay, the fewer “I love yous” I heard.   I know he used to call me Mommy.   When did he begin to just stare out into… nothing?   Joshua was moving backward, regressing.   A well-check visit with his doctor sent my world into a tailspin.  Just one word: Autism.   That was almost seventeen years ago.

Today’s Reality…

I have worked as a behavior therapist for nearly three years now.   In that time, I can count the number of African American children I have serviced on one hand.   That is not to say that autism does not affect African American children.  It is just to say that I serve a larger population of non-African American clients.   As a mother of an African American young man diagnosed with autism, this is concerning.  Why are we not seeing more African American families seeking therapy? Is it because of barriers to quality medical care?  Is it because of lack of financial resources?  Or could it be cultural beliefs?  Statistics bear out one fact…African American children are being diagnosed later than their counterparts.

National statistics state that Autism Spectrum Disorder (ASD) affects 1 in 68 children today.  This diagnosis affects boys nearly five times as often as girls.  It is not determined by race.  It is not determined by where you live.  It is not determined by how much money you make.   It is an equal opportunity disorder being diagnosed across these factors.   However, when you get diagnosed is a factor that can have a profound impact on a child’s development.   Early diagnosis and therapies to support language, communication, and social-skill development are important.  These have been shown to strengthen speech, relationship building, and interaction with others in a meaningful way.

Diagnostic Disparities…

African American children statistically are diagnosed later than their counterparts.  Because of this, they often miss opportunities for early intervention.   The failure to access services during early childhood can require more intensive and extended therapies later in life.

Statistics show African American families often have fewer resources.   These could be financial, access to care, or social supports.   Education about this diagnosis can be a powerful tool in closing the diagnostic gap.  Recognizing early signs of autism can help parents identify possible red flags.   The Centers for Disease Control “Know the Signs Act Early” campaign provides important information.   Their brochures highlight developmental milestones as well as developmental delays to watch from birth to age five.

Below are some red flags from the CDC that parents should know.  For more information, visit “Facts About ASD” on the Centers for Disease Control web site.

Red Flags…

Some signs about children with ASD include the following.

  • They may not point at objects they are interested in. (for example, not point at an airplane flying over).
  • They may not look when you point at objects.
  • They may show no interest in others.
  • They may not look at you when you speak.
  • They may like to be alone instead of with others.
  • They may have a hard time understanding emotions. (for example; sad, happy, scared, angry, etc.)
  • They may have a hard time saying what they feel. (for example; they are sad, happy, scared, angry, etc.)
  • They may not like being hugged.
  • They may look as if they are not paying attention when people talk to them.
  • They may have a hard time talking to others.
  • They may have a hard time playing with others.
  • They may say the same thing over and over.
  • They may have a hard time letting others know what they need.
  • They may not play “pretend” games. (for example, not pretend to “feed” a doll)
  • They may do the same thing over, and over again
  • They may need to have things done the same way every time.
  • They may have a hard time when things change.
  • They may act unusual to the way things smell, taste, look, feel, or sound.
  • They may stop doing things they once did. (for example, stop talking, playing with others, etc.)

Source: Centers for Disease Control and Prevention, 2016 – See footnote.

The information above does not address potential factors for diagnostic disparities suffered by African Americans.  It can, however, bring awareness of potential signs of autism.  This awareness can help families bring concerns to their pediatrician’s attention. Knowledge is power.  Early detection and intervention can make a significant difference.

Today, my son is preparing for adulthood.  We are working on vocational training with hopes of transitioning to college with educational supports.  Is his story typical? Who knows?  But shouldn’t it be?

For more information, see the resources below.

 

Bibliography

Centers for Disease Control and Prevention. (2016, March 28). Autism Spectrum Disorders (ASD)/Facts about ASD. Retrieved from Centers for Disease Control and Prevention: http://www.cdc.gov/ncbddd/autism/facts.html

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. https://iancommunity.org/ssc/finding-health-care-providers-adults-autism

Autism Is Not One Size Fits All

 A Shopping Trip

Joshua and Jacqueline
Joshua and I enjoying a trip to Ellis Island. Being in crowds can be hard for Josh for lots of reasons, but practice is making it easier!

At age fourteen, my son had begun to express a desire to show his individuality. It is something that most teenagers go through. Suddenly, they want to pick out their own clothes. They want to try new hairstyles.They want to explore their own individual taste in music. In short, they want to try all things cringe-worthy to parents. My son is autistic. Up until that point, he had shown very little interest in things most preteens and teens do.  He wasn’t into the current fashions other than what I bought.  He wasn’t into confusing adults with slang. He wasn’t into blasting Richter scale registering music. So, when he asked me to take him shopping, I was excited and somewhat scared.  He was becoming… a typical teenager.  This was something I had not thought would happen.  Not because I did not believe he would grow up and become a teenager, I did.  But because looking at him through a lens of autism, I was not sure what to expect.  I could not read his social cues; I did not know what would be next. I did not know whether he would continue to show delays in certain areas.  I did not know if he would suddenly show interests that were not there before. That may sound simple, but trust me, it’s not. Like a lot of parents, I stood ever alert. I was the self-professed playground police. I was the guard always at the ready to protect him from the world.  I squared my shoulders, grabbed my purse and keys, slid on my sunglasses, and said…let’s bounce!

Into Uncharted Territories

My son, Joshua, had always avoided the mall as if it were a punishment. I often wondered if this were a boy thing or an autism thing.  With Josh, it was probably more of an “I don’t want to follow mom through endless stores” thing. I admit, I was a true mall warrior and had shopped with the best of them. But shopping with Joshua was different. He would lag behind no matter how often I prompted him to keep up. He seemed to have a hard time trying to walk beside me. Forget about him trying to focus on my witty banter.  After finding that I was talking to thin air for the fifth time, I stopped dead. Frustrated, I looked back to yell for him to catch up. That’s when I saw that he was tracking my footsteps with his eyes.

Joshua and Jacqueline
Fascial expression recognition was hard
For Josh to understand, but after a few
hundred selfies with mom, he’s getting it!

Anticipating my movement by social cues was hard for him.  He had a hard time understanding that I would stop unexpectedly to ooh and aah over a sweater in a store window.  He couldn’t understand that my deep exhale was a signal of impatience towards teenagers stopping directly in front of us to talk. He couldn’t follow these social cues.  He was too busy watching my feet so that

he could move with certainty through the crowded mall full of holiday shoppers. I stopped in front of what I thought was an age appropriate clothing store for him.  I knew I would never fit into any of these styles again.  As we went inside, I watched my son suddenly come to life. He circled the racks of clothes like a prize fighter. I held up a camouflage pair of pants.  Wait, was that a smirk?  I held my breath and reached for a pair of cargo pants.   “Mom those are skinny jeans” he responded.  Now that was almost with an attitude!  Oh happy day.  Was he acting like…hell, like I did at fourteen shopping with my mom?  I approached who I thought must be the store manager.  I owned shoes older than this kid.

A Mother’s Fear….

“Tell me, are there any colors that my son should not wear?”  I asked.  I was trying to look cool and confident.  “Excuse me?” he answered, looking confused and bored.  How do they do that?  I repeated my question.  “Are there any colors my son should not wear?”   His gaze followed mine to the front of the store where my son stood.  He was examining a pair of bandana-printed sweatpants as if he would be quizzed on them later.  “My son has autism.  He wants to shop for himself.  I need to know if there are any colors he should not wear.  Gang related colors?”  The manager smiled.  He suddenly looked old enough to buy a beer.   “That’s a good question” he replied.  We spent the next few minutes discussing this. He explained that, where we lived, gangs were identified by sports teams, not colors.  He ran them down to me by pointing out baseball caps hanging behind the register.  I made mental notes.   My son bought a pair of sweat pants and a sweat shirt. They matched. He paid with his own money at the register from his own wallet.  As we exited the store, I asked if he wanted to visit the food court.

“I’m good” he replied. That day my son joined the ranks of “teenagedom” while I continued to protect him from the sidelines.  It was a good day.

Understanding the Dangers of the Unfamiliar Paths

Individuals with autism may have difficulties understanding social cues in their environment.  This inability could place them at risk.  Wandering; victimization from others; as well as having their movements or interactions misunderstood; are real dangers for those diagnosed on the spectrum.  Autistics, parents, and caregivers need tools to help protect them when they are in the community.  Autism Speaks offers several tools to help gain insight into societal dangers.  They provide suggestions on how a community can help to safeguard their loved ones.  While my concerns may not be shared by everyone, for me they are real.  Pretending not to see the elephant in the room does not make it go away.

See Autism Speaks safety plans and strategies for safety while in the community. Topics

Joshua and Jacqueline
Social gatherings are great practice for Joshua. Everyone dressed up for a formal dinner. Ok, maybe this was one selfie too many!

range from cell phone use, avoiding victimization, and asking for help, to interactions with law enforcement. You may need to practice these plans many times with your loved one.   Knowing what can possibly happen and being able to anticipate it is power. Safety is being prepared, not dealing with the aftermath. Remember, like fashion, nothing is usually one size fits all.  But can we afford to not try it on?

“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