What Autism Awareness Should be About

In this month’s ASAT feature, Executive Director David Celiberti, PhD, BCBA-D, offer, OPs his thoughts on expanding autism awareness once April has ended. To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook!

Autism Awareness Month will soon come to a close. The blue puzzle pieces will disappear from Facebook pages and billboards, the media will focus their attention on other topics of interest, and we will return to business as usual. And business as usual is not OK, particularly given that so many children and adults with autism are not accessing the most effective, science-based interventions that will allow them to realize their fullest potentials.

When I first entered the field over twenty-five years ago, autism was considered a rare condition. When people asked what I did for a living, they often misheard me and thought I worked with “artistic” children. Today, autism is no longer the rare diagnosis that impacts someone else’s child. Our extended families, our neighbors, and our co-workers are now all touched by autism. With 1 in 68 children receiving a diagnosis, the sheer number of individuals with autism is staggering and heightens awareness in and of itself.

For many conditions, awareness is key because awareness promotes detection, and with detection comes a relatively clear path towards treatment. Take, for example, conditions such as Lyme disease and many forms of cancer. Better prognoses are attached to early detection. Within a few short weeks of detection and diagnosis, patients typically receive science-based treatment. If their conditions are not detected early, then access to such treatments is delayed and their conditions will likely worsen. In the world of autism, detection is not the “be all and end all.” We do not just have a detection issue in autism, but also, and perhaps more importantly, we have an intervention issue.

It is my hope that the conversation about autism awareness will be broadened to focus upon and overcome the obstacles that separate individuals with autism from effective, science-based intervention, and that those that separate their families, caregivers, and teachers from accurate information about autism intervention.

I leave you with 10 ideas about what “autism awareness” should be about.

  1. “Autism Awareness” should recognize the need to differentiate effective treatments that are scientifically validated from the plethora of “therapies” and “cures” lacking scientific support. Autism treatment has become a multi-million dollar industry with 500+ alleged treatments and thus, science sadly placed on the back burner. This means that heart wrenching testimonials, surveys that are pawned off as scientific research, and outrageous claims abound, making it challenging for parents to determine the best course of action for their child. The aggressive marketing of these “therapies” and “cures” is absolutely overwhelming for parents who are desperate for accurate information to help their children realize their fullest potential. For most other medical conditions, a provider that disregards proven intervention and uses a fringe treatment may actually be sued for malpractice. Such safeguards are not yet well established for autism treatment.

 

  1. “Autism Awareness” must recognize the responsibility that we have, as a society, to make sound choices.I use the term “society” given the myriad of stakeholders who make critically important decisions for persons with autism – not just parents, but siblings, teachers, treatment providers, administrators, program coordinators, elected officials and even tax payers. Decision-making power comes with tremendous responsibility. There are far too many individuals with autism who are not receiving effective treatment, are receiving ineffective treatment, or are subjected to treatments that are, in fact, dangerous. Every minute of ineffective intervention is one less minute spent accessing effective intervention.   Choices made have profound implications.

 

* Please see the questions that appear at the end of this article to promote more careful decision making at http://www.asatonline.org/pdf/roadless.pdf

 

  1. “Autism Awareness” must recognize that available information (and information providers) varies greatly in accuracy.As we know, not all information on the Internet is reliable and accurate. Often Internet information is deemed equivalent in relevance, importance, and validity, to research published in peer-reviewed scientific journals. It is not.

 

  1. Autism Awareness” must include careful and responsible reporting by journalistsThere are dozens of “miracle cures” and “breakthroughs” for autism that receive widespread media attention, even if they have not been proven effective. Unfortunately, treatments actually shown to be effective typically receive the least amount of media attention. It is hard to imagine that things will improve dramatically for the autism community in the absence of more accurate representations of autism treatment in the media.

 

* You will find examples of accurate and inaccurate reporting at http://www.asatonline.org/for-media-professionals/about-media-watch/ ASAT is undertaking proactive steps to enhance accuracy in media reporting.

 

  1. “Autism Awareness” should recognize the critical need for newly diagnosed children to access effective treatment as soon as possible.We also know that we have a limited window of time to prepare children for the least restrictive setting once they enter public school. The fact that resources allocated early can save a tremendous amount of resources over an individual’s lifespan does not always enter the conversation when evaluating costs and benefits. That must change.

 

  1. “Autism Awareness” should also instill hope for a better tomorrow for those individuals who are not part of the “best outcome” group.With the right treatment, individuals with autism can lead happy and fulfilling lives. Research indicates that interventions such as applied behavior analysis (ABA) can effectively help children and adults with autism realize their fullest potential. The conversation about “cure” often delegitimizes and derails important conversations about how we can help individuals with autism live and work independently, develop meaningful and sustainable relationships, reduce challenging behaviors that may limit opportunities, access faith communities, and enjoy the array of recreational pursuits that are available within their communities. Those are important conversations to have.

 

  1. “Autism Awareness” must mandate accountability from all treatment providers. Accountability involves a shared commitment to objectively defined targets, data collection, and respect for the scientific method. It is every provider’s responsibility to objectively measure outcomes regardless of their discipline. No one should get a pass on accountability. No one is immune from defining their target and objectively measuring progress. No one should get away with implementing their intervention carelessly and in no-transparent manner. No one should be permitted to boast claims that they cannot demonstrate through data. These unfortunate realities should not be tolerated.

 

  1. “Autism Awareness” must involve recognition that an abundance of clinical research already exists.Too often the plethora of peer-reviewed research that could guide and inform treatment efforts is disregarded altogether. If treatment providers and consumers are interested in published research on diverse topics such as improving conversation skills, promoting academic skills, eliminating pica, or developing tolerance for dental procedures, they can find it. Thousands of researchers have worked hard at publishing their findings in peer reviewed journals and their findings are often overshadowed by a media that practices sensationalism to provide consumers with information about the “next big thing” in autism treatment.

 

  1. “Autism Awareness” should help us identify and overcome the barriers that face our families everyday.Not every child with autism is invited to birthday parties. Not every faith community welcomes families of children with autism. Not every school provides meaningful contact between students with autism and their typically developing peers. Not every community provides recreational opportunities for individuals with autism. The absence of these opportunities is both a function of misinformation about autism and the lack of awareness about the successful efforts of others who have overcome such barriers. With 1 in 68 children being diagnosed, every facet of society would benefit from evaluating what they are doing, what they are not doing, and what they could be doing differently.

 

  1. “Autism Awareness” should be about the reality that the hundreds of thousands of children with autism will soon become hundreds of thousands of young adults with autism. We are facing a crisis in the field with a scarcity of services for adults with autism and the absence of a clear strategy for closing the gap between the ever increasing need, and an unprepared supply of resources. The Association for Science in Autism Treatment has committed to broadening its scope to be a part of an important dialogue about adults with autism.

We all play a role in bettering the lives of individuals with autism and helping their families and supporters become skilled and savvy consumers. Embrace that role with an eye toward identifying what additional steps you can take to become a contributor to important conversations and an even bigger part of the solution.

 


David Celiberti, PhD, BCBA-D, is the part time Executive Director of ASAT and Past-President, a role he served from 2006 and 2012. He is the Co-Editor of ASAT’s newsletter, Science in Autism Treatment. He received his PhD in clinical psychology from Rutgers University in 1993. Dr. Celiberti has served on a number of advisory boards and special interest groups in the field of autism, applied behavior analysis, and early childhood education, and been an active participant in local fundraising initiatives to support after school programming for economically disadvantaged children. He works in private practice and provides consultation to public and private schools and agencies in underserved areas. He has authored several articles in professional journals and presents frequently at regional, national, and international conferences. In prior positions, Dr. Celiberti taught courses related to applied behavior analysis (ABA) at both the undergraduate and graduate levels, supervised individuals pursuing BCBA certifications, and conducted research in the areas of ABA, family intervention, and autism.

Tip of the Week: A Simple Highlighter Tip to Help Your Child With Handwriting

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This week, Understood and teacher Ginny Osewalt share an innovative way you can help your child with handwriting. 

If your child is a struggling writer or has dysgraphia, she may have poor handwriting and trouble with spelling and getting her thoughts down on paper. It may be hard for her to read back what she’s written. She may fatigue easily or avoid writing altogether.

When writing gets in the way of your child learning or showing what she knows, having her dictate her responses to a scribe can be an appropriate accommodation. At home, that scribe may be you.

When you scribe for your child at home, here’s a way to get your child more involved in the process. This tip helps your child take ownership of her written work—and provides some handwriting practice, too.

All you’ll need is a thin yellow highlighter and a piece of lined paper. When your child dictates, use the highlighter to record, word for word, her thoughts and responses. Be sure that you’re using good letter formation. Pay attention to the lines and margins on the page, and use appropriate spacing between words. After your child has finished dictating, hand her the paper on which you’ve scribed.

Next, have her trace over the yellow text with her pencil, starting with the very first word and continuing down to the last punctuation mark. When she’s finished tracing, have her read what she’s written to herself and make any changes without your help (if possible). Then, have her read it aloud to you.

You may be amazed at how well your child adapts to this scribing method. Just keep in mind that scribing shouldn’t replace good classroom writing instruction. Also, be sure to explore the wide range of assistive technology tools available for struggling writers, like keyboards and dictation software.


About The Author

Ginny Osewalt is a dually certified elementary and special education teacher with 14 years of experience in the classroom. She is also an Understood expert.

This post originally appeared on Understood.org

Tip of the Week: Travel Tips for Children With Autism

This week, writer and mom Ruth Manuel-Logan shares her tricks for travel with children on the spectrum. 

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Traveling with children can be daunting, and when you travel with a child who has autism and requires organized structure, venturing out into unfamiliar surroundings can add an entirely new dimension to the experience.

Autism is a spectrum of neurological disorders characterized by severe and pervasive impairment in various areas of development such as language and social skills. It affects 1 in 88 children, primarily boys, and it is most often detected by age 3. Because children with autism typically require predictability, vacations can be over-stimulating and distressing for the child with autism.

Unfortunately, there are many parents with children on the autism spectrum who are afraid of journeying beyond their own communities. Even thinking about taking a vacation can summon up feelings of trepidation in parents and family members. Caregivers are overwhelmed at the thought of managing quirky, self-injurious, or violent behaviors that their child might exhibit in public; they also fear stares, rude comments, or judgments by others. They may opt, therefore, to keep their special needs child at home.

But traveling with kids who have autism is possible and doesn’t have to be difficult. Here are tips that can make your trip a pleasurable one for your child and a positive experience for the family.

Choose the Best Destination for Your Child

Vacations mean transition, which children with autism may find difficult. You have to know your child and have a thorough understanding of his needs first. Children with autism tend not to be socially intuitive, and new experiences can result in meltdowns, so planning what can be executed and enjoyed by your child is imperative. “Children with autism are stress detectors. They sense others’ stress and react in ways that are considered an interruption to the planned agenda for the day. For this reason, vacations at the beach or in the mountains, where schedules are often flexible and unhurried, can be ideal for a child with autism,” says Rebecca Landa, Ph.D., Director of the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore, Maryland.

Does your child like amusement parks? Is hiking in your child’s comfort zone? Do you find that his sensory issues fade when he’s basking in the sun on the beach? No matter where you travel, you should always remember the activities that your child will enjoy. Try not to overload him by bombarding him with too many things to do, as this will cause stress for everyone involved.

Include your children as active partners in the planning. Adapt it to your child’s interests, information-processing abilities, and attention span, and relate it to the upcoming trip. Researching the destination and how you’re getting there, and talking about accommodations and the kinds of activities that are well suited to your child are all part of planning process.

Make Arrangements Ahead of Time

Calling ahead to make special arrangements will make your trip easier. Contact airlines, hotels, restaurants, and amusement parks and explain that you are traveling with a child who has autism; discuss your needs and request certain accommodations.

Kim Stagliano, mom of three girls ages 11, 15, and 17 (all whom have autism) and author of All I Can Handle: A Life Raising Three Daughters with Autism, is a firm believer in planning ahead before she and her husband take their trio anywhere. “If we fly, I use the pre-boarding opportunity to tell the airline staff that the girls have autism, so that they can understand if we have a situation and offer us extra assistance if we need it.

Many major airlines, theme parks, hotels, and restaurants are often amenable to the needs of children with autism. In 2011, Logan Airport in Boston hosted a free rehearsal flying experience, called Wings for Autism, for children with autism and their families so that personnel can better understand the community. Families from three states — Massachusetts, Connecticut, and New Hampshire — took part in the airport dress rehearsal. JetBlue even lent one of their planes for the event and its flight crew volunteered their time. Families were allowed to go through a mock airport experience, including a normal screening process with airport staff checking to see how a child reacts when a favorite toy or backpack is taken away for scanning. Then they boarded the plane and helped practice staying seated and belted. Airports in Philadelphia and Newark have staged similar events and Manchester Airport in London produced an informative brochure on flying with autism, called “Airport Awareness.”

Theme parks across the country are also finding ways to accommodate children with autism. “We usually go to the guest relations office that can be found in most theme parks and request special passes so that we don’t have to wait on long lines,” says Amy Dingwall, of Trumbull, Connecticut, whose 17-year-old son, Ryan, has autism.

Prepare Proper Identification

Having a child with autism means increasing your safety quotient; many kids tend to wander and flee from adult supervision. According to a survey released in April 2011 from the Interactive Autism Network, wandering is probably the leading cause of death among children with autism. Even more dangerous is the nonverbal child who wanders and cannot supply any information.

Getting your child a medical bracelet or necklace with contact information is essential, particularly when traveling. If your child has sensory issues that would prevent him from wearing the jewelry, you can order ID tags that can be attached to shoelaces or even zipper pulls (like the ones from Zoobearsmedicalid.com). If your child is nonverbal, you might want to make an ID card to put in his pocket with a current photo, contact information, and a list of allergies. Be sure to also indicate that your child is nonverbal. “No matter where you go, remember to think ahead about safety for your child,” Dr. Landa advises.

You could also have your child wear an autism symbol ribbon or even a shirt with an autism message or organization logo so that strangers get a visual reminder. “Our kids are so good-looking, folks are often taken aback by ‘unexpected’ behaviors. Place a label with your child’s name, your name, and a cell-phone number on the back of the child’s shirt while traveling so that if you become separated, a kind soul can contact you,” Stagliano suggests. When Stagliano’s daughter was 12 years old, she slipped out of sight at Newark Liberty International Airport in New Jersey and came close to boarding a tram. “No one may have noticed a kid on her own, but she would have been in grave danger.”

Pack the Essentials…and Some Distractions

Put together a checklist to ensure that you leave nothing behind that your child will require. Children on the autism spectrum often need reinforcements, many of them tangible, so don’t forget to bring these along on your trip to reward his good behavior. All children are attached to their loveys, but children with autism can’t leave them behind because they see the loveys as extensions of themselves; forgetting them can end up putting the brakes on a much-anticipated getaway.

Soothers such as MP3 players, DVDs, or a favorite piece of string or eraser usually keep children calm and preoccupied. Think of your child’s daily routine and bring along the necessities that help him get through his day — snacks, toys, books, diapers/Pull-Ups, or assistive communication tools. Show your child what you are packing just in case he feels any angst about your forgetting any favorite items. “We go to extremes to make sure our three girls have their familiar items to help them feel comfortable,” Stagliano says. “This includes electronics like their iTouch or MP3 player, portable DVD player, games, or iPad. We make sure to pack a suitcase full of distractions.”

Practice Vacation Scenarios in Advance

Let your child know what she might expect to do or see on vacation. Role-playing what might take place during the trip can ease future regrets. Creating a sequential picture story of what will occur is an enlightening and effective tool in getting your child ready for the trip. Experts say that these types of word/picture scenarios can help relieve stress and reduce problem behaviors in children with autism.

“The entire preparation process should be spread out over the course of many weeks. Each day, create a routine where you ‘talk’ about the trip together. You and your child can arrange pictures related to the trip in the order in which the events will occur chronologically. Help your child organize pictures of the hotel or family member’s house where you will be staying into a collage or other visual arrangement. You can even provide a simple explanation or caption for each picture. As the trip nears, your child will be able to help narrate the captions and event descriptions, or affirm your narration,” Dr. Landa says. “You know your child best, so be sure to tailor the amount and complexity of information to his or her needs.”

Dingwall finds that preparing Ryan just a few days before a trip works best for him. If she reveals details about a vacation too far ahead in advance, Ryan will lose sleep because of his anxiety and will also perseverate, a common trait among children with autism, whereby they repeat a certain phrase or action. “We are always prepared with two types of picture schedules — one on Ryan’s iPod Touch, using his picture-based prompting app iPrompts, and the other a backup with pictures and Velcro backings that can easily be switched as needed,” Dingwall says.

Always Set Aside Breaks

Vacations do not fall into usual routines, so children with autism may feel lost and unanchored, and that can lead to breakdowns. Know your child’s trigger points and plan accordingly. “We don’t feel as if we have to spend all day at a theme park. Just a few hours that my daughters can handle and then a swim is much easier than eight long hours in a park followed by meltdowns. We also make sure to stick close to our bedtime routine even though we’re on vacation. Getting a good night’s sleep often helps prevent [unruly] behaviors,” Stagliano says.

Does your child tend to tire at around the same time each day? Does too much visual or physical stimuli kick start bouts of anxiety? Did you overschedule your child? “As you assemble the trip agenda, it’s essential to plan for breaks and downtime so that it is not an afterthought,” Dr. Landa cautions. As the parent, you have to know when to throw in the towel by anticipating needs and taking a break by bringing your child to a quiet spot, a relaxation space, or back to the hotel room to wind down.

Copyright © 2012 Meredith Corporation. Reviewed and updated 2013.

 


About The Author

Ruth Manuel-Logan is the proud mom of a 12-year-old child with autism whom she loves to Reese’s Pieces. Ruth is hopeful that she’ll be able to flip on the auto pilot switch and allow her son to make his own independent mark in the world one day.

Article originally posted on Parents.com

Tip of the Week: Dos and Don’ts of Fidgets

This week, Different Roads is proud to share some tips from Nancy Hammill and Understood on the dos and don’ts of fidgets, both in the classroom and at home!

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Fidgets, like squeeze balls and key chains, are self-regulation tools that promote movement and tactile input. They can be great for kids who struggle with attention, focus and sensory processing.

But in my many years as a teacher and parent, I’ve often seen them misused. When I see a child throw a squeeze ball across the room or obsess over making shapes out of Silly Putty, I know something’s gone wrong.

The problem is we often hand fidgets to kids without any direction, thinking they’ll magically know how to use them. Then when they play with them—rather than use them as a tool—we get angry.

That’s why it’s important to teach kids how to use fidgets. Here’s what I suggest.

First, explain to your child that a fidget is one strategy in her “tool kit” to help her improve focus on a task. When used correctly in the right situation, fidgets can help her be a better listener, sustain attention on her work, and even calm down or slow down her body and mind.

Basically, a fidget is a tool to help her focus—not a toy.

Second, work with your child to identify specific times she might need a fidget. For example, she might need it when she’s doing homework or needs to sit still in a movie theater.

Third, set up clear rules for how to use fidgets in your home, and communicate them to your child. If you’re unsure where to start, here are my “non-negotiables”:

Rule #1: Be mindful. Before you grab a fidget, think about whether you need it. If you don’t know, review rule #2.

Rule #2: You can only use a fidget to help with focus and attention or to calm down. Otherwise it will be taken away.

Rule #3: Don’t use a fidget if it distracts others or interferes with the work others are doing. If the fidget does distract others or interfere with their work, use a different fidget or strategy.

Rule #4: Every time you’re done with a fidget, put it back where it belongs. (In our house, we keep fidgets in a designated basket.)

If you want to try a fidget with your child, there are many options to choose from. Experiment to find what works best for your child. But I recommend that you don’t get a fidget that has a cute face or that looks like a toy. Your child needs to remember that fidgets are tools.

When you’re ready, you can set up a fidget basket (or other spot), print the rules, and put the rules in a place where your child can easily see and review them.


ABOUT THE AUTHOR

Nancy Hammill is the 2016 National Learning Disabilities Educator of the Year, awarded by Understood founding partner the Learning Disabilities Association of America. She has 20 years of experience as a classroom teacher, literacy specialist and learning therapist.

About Understood: The professionals who advise parents on Understood are all experts in their fields. They include educators, learning and attention specialists, physicians, psychologists, lawyers and more. They share a commitment to children with learning and attention issues.

It Takes a Team: 4 Steps to Building a Stronger Therapy Team

For students on the Autism spectrum, having a strong and reliable therapy team to support individual needs can be an important factor in student success. When members of a therapy team are collaborating seamlessly, a student is more likely to have high quality support across all areas of development (communication, social, cognitive, play, motor, and adaptive skills).

mixed working group looking at laptopThe pervasive nature of ASD across these areas means that multiple disciplines are necessarily involved in effective intervention (Donaldson and Stahmer, 2014). When we work together and have a narrow focus, we can help our students make a great deal of progress. Gone are the days of a Speech Language Pathologist, Physical Therapist or Occupational Therapist taking a student away for traditional pull out therapy and leaving no time for debriefing with the classroom team.

Who comprises the therapy team is determined on a case-by-case basis. You may be wondering where to start with this sometimes daunting task of building a strong and supportive team. Below I will discuss some strategies that are evidenced-based and the ways that I incorporate them into my busy life as a speech language pathologist.

Pairing
One of the first things that I always try to do is build rapport with staff, which is known as a behavioral principle called pairing. It is important to build rapport and/or pair with team members, especially if you are new to the team or if other new members have joined. It may sound like very basic advice, but as clinicians we are very busy and sometimes we feel that we do not have time for this piece. I am urging you to put this time with staff on the top of your priority list. Once you have a good rapport with team members, it allows you to share ideas and collaborate more easily and more effectively.

Sharing
The next tip I have is to share the goals your student is working on. If you are the teacher, share the student’s IEP goals with the paraprofessionals and explain why you are teaching particular tasks. Knowledge is power! If you are the occupational therapist, please share your student’s therapy goals with the team. Therapy takes place all day, across settings and across instructors. If the team does not know what the goals are, they will have no idea how to address them across the school day.

Reinforcement
Students and professionals benefit from reinforcement! People feel good about the work at hand when they receive positive reinforcement. Let the paraprofessional know that they are doing a great job with their student(s). Everyone likes to get praise for a job well done!

Data
Another way that we can assure that our collaboration is helping the student is by collecting daily data on skills from all domains (i.e. behavior, academic, communication). When we, as a team, create a data sheet that captures the skills and specific targets we are addressing, we can use this across the student’s day. When we take this data and analyze the progress, we can all make informed decisions about a student’s programming needs. I have included a free team-based daily data sheet from Stages Learning. You can use this data sheet to track a variety of skills.

In my 14 years practicing in the field, the majority of people that I encounter are driven by a desire to see their students. However, even with the best intentions, we may face barriers in collaborating with other staff members. Follow the tips mentioned above and reach out to colleagues who seem to need additional support. I try to continually assess the needs of the teams I work with throughout the year. Maybe the team needs a refresher on a certain skill area – see if you can work this into your yearly professional development time. When we work together as a team, we can help so many students achieve their goals!


ABOUT THE AUTHOR

rosemarie-griffin-headshotRosemarie Griffin, MA, CCC-SLP, BCBA is a licensed speech language pathologist and board certified behavior analyst. Currently she splits her time between a public school system and a private school for students with autism. She is passionate about lecturing on effective communication services for students with autism and has done so at the local and national level. Rosemarie also enjoys spending time with her family, playing the harp and shopping.

Article originally posted on Stages Learning Materials Blog.

Medication Considerations

What do you do when your doctor recommends medication? In this month’s ASAT feature, Megan Atthowe, RN, MSN, BCBA, offers insight on a variety of approaches parents can take when medication is recommended for children exhibiting aggressive behaviors. To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook!


My son with autism has developed aggressive behavior, and his doctor is considering whether medication could help. What can I do to prepare for this conversation?
Answered by Megan Atthowe, RN, MSN, BCBA

doctor-563428_960_720First, you should know that there is no medication that specifically treats autism. Medications approved by the United States Food and Drug Administration (FDA) for other conditions can be useful only to lessen symptoms. That said, off-label use of pharmaceuticals is by no means unique to autism and is common practice for many health conditions. So while research on the use of particular psychotropic medications in the autistic population is growing, our body of knowledge is still limited. In addition, medications can and do affect every individual differently, and children can respond differently as they develop, so it is likely to take time to find the best medication at the appropriate dose. Medication management, in other words, is a complex and an ongoing process and one that is highly individualized. It is a good idea, then, to be prepared with the right information before every visit to your health care provider.

Do you know how often the aggression actually occurs? Bringing data like this to the visit can be very helpful. You may want to ask your son’s teachers to share any information they have about the aggression with your health care provider, too. (They would need your consent to talk with him/her or to share any confidential information such as behavior data.) If you have not been keeping track of the aggression, now is a good time to start, even if there are only a few days until your visit. An easy way to do this is to use a calendar. Record specifics about when the aggression happens, what the behavior is like, how long it lasts, and whether you have noticed any recent changes. It is difficult for anyone to recall these details accurately, especially if the behaviors happen frequently, so writing them down will help you to share the most meaningful information you can with your health care provider. If your son’s school team is not already collecting data, perhaps they should start as well.

In addition to information about the current levels of the behavior, be prepared to describe how the school and your family are addressing the behavior and how long that plan has been in place. Has your son’s team considered or tried Applied Behavior Analysis (ABA) to treat the behavior? Research supports ABA as an effective intervention for decreasing problem behaviors such as aggression as well as for teaching children with autism new skills. It is important to be sure that a qualified behavior analyst is supervising any ABA interventions, as they must be implemented correctly to be effective. Your health care provider may be able to refer you to a local ABA provider, or you can find a list of board certified behavior analysts at the Behavior Analysis Certification Board’s website.

Before your visit, prepare a list of the names and doses of any medications your son takes, as well as any over-the-counter medications, vitamins, or other supplements. If your son receives other therapies, share what they are with your health care provider. He or she will want to ensure that any new medication is safe to take and will not interact with other medications.

If you and your health care provider decide to start your son on a medication, decide what the goal is. How will you know when the medication has been effective? How will you know if it is ineffective? Be specific and write the goal down. Schedule a date when you will check in with your health care provider on your son’s progress. He or she may have specific suggestions about what type of data to keep.
Finally, there are some important questions that you should have the answers to before you leave. Make sure that you ask any questions you have—a responsible health care provider will want to know that you understand how to use the new medication correctly. If you think of questions later, do not hesitate to call and ask your physician, nurse, or pharmacist.

Key Questions:

  • What is the name of the medication?
  • What is the medication used for?
  • When and how should I give it to my son, and how much do I give?
  • Should I give this medication with food?
  • What effects should I expect to see?
  • What are common side effects?
  • How long will it be until I notice the desired effects and side effects
  • What side effects are serious, and what should I do if I notice them?
  • Will side effects lessen over time?
  • Is there anything I should avoid giving my son while he is on this medication?
  • If I decide that I would like to stop giving him the medication, what should I do?
  • What should I do if I miss a dose?

Please note that there is information about research related to medications elsewhere on the ASAT website.

ABOUT THE AUTHOR

Megan Atthowe, MSN, RN, BCBA, LBA, is a registered nurse and behavior analyst who has worked with people with autism and other special needs in educational, home, and healthcare settings for over 15 years. Currently she consults to educational teams who serve students with autism in public schools.

Autism and the Peer Review Process

Autism peer review process

If one wanted to market a scientifically-unproven intervention, device, or pill as a valid autism treatment to families affected by autism, how would one go about it? Glossy pictures? Glowing testimonials? Miracle claims? Hyped social media pitches? Charming infomercials? Answer: All of the above.

And, here’s another marketing strategy: portraying one’s product as having scientific validation when, in fact, such validation does not exist. To do this, one might make references to “scientific evidence” in material that, upon systematic inspection, is less than convincing.

I was reminded of this when I recently reviewed a web page that boldly claims, “SCIENTIFIC RESEARCH Verifies The Son-Rise Program® WORKS!” Findings support the efficacy of parent-delivered SRP intervention for promoting social-communicative behavior in children with autism spectrum disorders.”

What are these findings? On the website, the Son-Rise marketers provide a link to a key source of their “verification” – a paper entitled “Training Parents to Promote Communication and Social Behavior in Children with Autism: The Son-Rise Program”. This paper, written by a trio of Northwestern University researchers, presents a study of the purported benefits of intervention delivered by 35 parents of children with autism who participated in a five-day parent-training course on Son-Rise Program methods, as well as an advanced follow-up course 3-12 months later. Parents completed The Autism Treatment Evaluation Checklist (ATEC), a rating scale that contains items on communication, sociability, cognition, physical status and behavior.

The authors divided the 35 parents into three groups based on how many hours of intervention the parents reported giving their child each week during the interval between their first and second Son-Rise trainings (i.e., no intervention [11 parents], 1–19 hours [13 parents], 20 or more hours [11 parents]). The authors present results reflecting statistically significant higher ATEC scores at second ATEC completion relative to the first, and they suggest that these higher scores reflect real improvements in communication, social skills, and sensory and cognitive awareness. They go on to point out that children with greater gains were more likely to have had more hours of parent-administered SRP.

As linked on the Son Rise web-site, this study is typeset like a published research article, prompting me to try to determine which peer-reviewed journal had published it. Through email correspondence, the third author, Cynthia K. Thompson, reported that the study had not been published because the team had decided to collect additional data prior to submission for peer review. In other words, this study is a “work in progress” and certainly not a verification of treatment effectiveness. In fact, this practice of repeatedly analyzing results prior to the close of data collection is, in itself, problematic from a scientific standpoint, as the process involves conducting many analyses that often yield varying results but are never reported (see Simmons, Nelson, & Simonsohn, 2011).

One of the mechanisms that make science such a powerful engine for progress is the reliance on the peer review process. The scientific method requires that, when a scientist makes an assertion (e.g., “This treatment works!”), (s)he knows that there exists a responsibility to show other scientists how they arrived at their conclusions with enough specificity that others can replicate the study. It is through this process of peer review that faulty assertions about the data are challenged and, hopefully, rejected in short order.

Typically, in the peer review process, an editor reviews a manuscript and, if deemed appropriate, shares the manuscript with a team of reviewers with demonstrated expertise in the relevant subject area. In many cases, these reviewers are “blind” to the identity of the authors and vice-versa, so as to minimize personal biases (e.g., affiliations, personal grudges). The reviewers are charged with the task of evaluating the contents of the manuscript on the basis of scientific merit, including the methodology, statistical analyses of the data and logic of the authors’ conclusions. The reviewers then describe, in writing, their opinions regarding the strengths and weaknesses of the study and make a recommendation regarding publication. The editor synthesizes this feedback and provides a summary to the author(s). In many cases, the editor will reject the manuscript for publication altogether. In other cases, he or she may require revisions, acknowledge limitations, temper conclusions or make other substantive changes prior to publication.

In the case of the manuscript written by Thompson and her colleagues, I suspect that, if it were submitted to a journal with a legitimate peer review process, a multitude of questions would be raised about it, including:

  • participant recruitment (35 self-selected parents out of a pool of 430 parents, many of whom participated in the first training but apparently did not return for more)
  • group distribution (non-random group assignment)
  • the outcome measure (one brief checklist completed by parents)
  • treatment fidelity (no way of verifying the quality or quantity of actual treatment), and
  • control for placebo effect, expectancy bias or any number of potential threats to the validity of responses.

And, despite some effort on the part of the authors to control for this, there is no real way of knowing what other interventions the child was engaged in during the interval between their parents’ first and second Son Rise training.

Of course, scientists who make up peer review committees are vulnerable to the same kinds of human frailties as the rest of humanity (i.e., jealousy, ego, bias, profit motive); however, the communal nature of the process, as well as another scientific safeguard- replication of results by others- helps to minimize the degree to which these frailties impact decisions regarding the quality of a study and our confidence in the results. The scientific method is far from perfect, but it is probably the best game in town for vetting new interventions.

Parents and other consumers of product pitches can watch for treatment claims that look like they have been established through the scientific process but in actuality fall short. Discuss potential treatment options with licensed and/or board certified experts whom you trust. Practice skepticism, especially when fantastical claims are made. Use resources, such as ASAT’s Treatment Summaries for quick reference. Families affected by autism deserve honest, direct communication about the state of the science for treatment options. Accept nothing less.

References

Simmons, J. P., Nelson, L. D., & Simonsohn, U. (2011). False positive psychology: Undisclosed flexibility in data collection and analysis allows presenting anything as significant. Psychological Science, 22, 1359–1366.

Cite This:

Mruzek, D. W. (2012). Focus on science: “Verification” and the peer review process. Science in Autism Treatment, 9(3), 18-19.

About The Author

Daniel W. Mruzek, Ph.D., BCBA-D is an Associate Professor at the University of Rochester Medical Center (URMC), Division of Neurodevelopmental and Behavioral Pediatrics in western New York. He received his doctoral training in Psychology at the Ohio State University and is a former Program Director at the Groden Center in Providence, Rhode Island. Currently, he is an associate professor and serves as a clinician and consultant, training school teams and supporting families of children with autism and other developmental disabilities.

Mruzek coordinates his division’s psychology postdoctoral fellowship program in developmental disabilities and is an adjunct faculty member in the University of Rochester Warner School of Education. He is actively involved as a researcher on several externally funded autism intervention research studies and has authored and co-authored more than 20 peer-reviewed articles and book chapters on autism and other developmental disabilities. Dr. Mruzek is on the editorial board for the journals Focus on Autism and Other Developmental Disabilities, Behavior Analysis in Practice, Journal of Mental Health Research in Developmental Disabilities, and Intellectual and Developmental Disabilities. Dr. Mruzek is a former member of the Board of Directors of the Association for Science in Autism Treatment.

To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook!

Who’s Most Qualified To Work With Your Child.txt

Parents of children with autism are faced with a wide range of choices when it comes to the education and support of their children. The most important question of all is who’s most qualified to work with your child? Although a great deal of research supports Applied Behavior Analysis (ABA) as the only effective treatment for autism, there are still many other interventions that are touted as potentially helpful. Research shows that combining ABA with other interventions is less effective than implementing it alone, with high fidelity and intensity (Howard, 2005).

Who's Most Qualified To Work With Your Child? Not all behavioral professionals are created equal. There is little control over the use of terms like “behavior specialist,” “behavior therapist,” and “behaviorist.” Just about anyone can claim to be one of these, often on the basis of very limited training and virtually no on-going supervision.  Consumers are often not aware that these are uncontrolled titles, and may put their trust in untrained, unsupervised practitioners. 

The problem of lack of quality control in behavior analysis was addressed by the development of state certifications for behavior analysts, and eventually the Behavior Analyst Certification Board (BACB) was formed. 

BACB credentials allow consumers some degree of confidence in the education, training, and supervision of the professionals they entrust their children to.  If someone claims to have one of these credentials, consumers should be able to find them on the BACB registries, easily accessed online at www.bacb.com

What does the BACB mean for consumers?  Those seeking behavioral interventions for themselves or others can look for professionals who have met the standards of the Behavior Analyst Certification Board with the confidence that that they have a minimum level of education, experience, and supervision and that they are obligated to follow an ethical and professional code.  Whether looking for a school program, privately hiring a professional, or seeking insurance coverage of services, the BACB designations can help consumers to determine if professionals and staff members providing services are well-qualified. They are also not at all easy to accomplish, so it is safe to say that someone with one of these credentials has achieved a high level of understanding of the science of behavior and the practice of behavior analysis.

Some states now license and certify behavioral professionals, and the standards for state licensure and/or certification may be more or less than those required by the BACB.  Having a BACB credential in addition to state licensure ensures that the professional also meets the BACB’s high standards. 

Credential Minimum education requirement Type of work Supervision
Registered Behavior Technician (RBT) High school diploma or equivalent Direct implementation of behavioral interventions (paraprofessionals) Ongoing by a BCaBA, BCBA, or BCBA-D
BCaBA Bachelor’s degree Practice under supervision, supervise RBTs Ongoing by a BCBA or BCBA-D
BCBA Master’s degree Independent practice, supervision of BCaBAs and RBTs None
BCBA-D Doctoral degree Independent practice, supervision of BCaBAs and RBTs None

 

Guest post written by Dana Reinecke, PhD, BCBA-D.

 

References

www.bacb.com, retrieved January 28, 2017

Howard, J. S., Sparkman, C. R., Cohen, H. G., Green, G., & Stanislaw, H.  (2005).  A comparison of intensive behavior analytic and eclectic treatments for young children with autism.  Research in Developmental Disabilities, 26, 359-383.

National Autism Center.  (2015). Findings and conclusions: National standards project, phase 2. Randolph, MA: Author.

Spotting The Difference Between Fake and Real News

Spotting The Difference Between Fake and Real News

The decisions of many consumers are influenced by what they read in the newspaper or on the Internet and hear about on television or radio. It is our belief that access to effective treatment for the autism community is enhanced by accurate representations of autism treatment by these media outlets. Unfortunately, many media representations are fraught with inaccuracies. Here’s what you need to know about spotting the difference between fake and real news.  

Effective treatments typically receive less press attention because their providers are often focusing on maximizing outcomes in an accountable manner rather than on soliciting media attention. They are also limited by ethics codes on how they can promote their treatment and services.

Many of you may be familiar with the Latin phrase, “Caveat Emptor,” which means “the buyer alone is responsible for checking the quality and suitability of goods before a purchase is made.” With scores of “miracle cures” and “breakthroughs” for autism receiving widespread media attention well before they have been shown to be beneficial through credible, peer-reviewed research, “Caveat Lector: Let the Reader Beware” seems to be a very suitable guiding principle across all media platforms (e.g., print, radio, television, Internet) particularly at a time when “fake news” is becoming commonplace. In other words, the reader is put in the position of being him/herself responsible for evaluating the quality and suitability of information being presented to him or her.

As a consumer, you bear a responsibility to scrutinize sensational claims related to various autism treatments and to be knowledgeable enough to consider such stories through a skeptical lens. We wish you did not need to work so hard to differentiate good information from bad, but that is the sad reality of autism treatment today, with 500+ treatments being touted. Unfortunately, many writers and journalists are not well versed in research methods, unless they specifically write about science, which is a very small portion of all individuals writing about autism out there.  With all this in mind, when reading or hearing about an autism story in the media, please consider the following questions:

About the Intervention

  • Does the article or story describe how the intervention actually helps individuals with autism? In what ways?
  • Are those ways observable and measurable? Substantial? Meaningful?
  • Does the article or story report the costs of the intervention? Are these costs reasonable, both in monetary and human resource terms?
  • Is there any report of harm imposed by this intervention? What are the risks? What are the side effects? Does the article or story appear balanced between these?
  • Who can carry out this intervention? What kind of education, training and supervision do individuals need to have before implementing the intervention?

About the Experts

  • Whom did the author interview for this story and what are this person’s qualifications? Is he/she presented as an expert?
  • Is the interviewee making claims of efficacy/effectiveness that are supported by scientific data? What does the interviewee/expert stand to gain from this story? Who may benefit financially from this particular media exposure? How would they benefit?

About the Underlying Scientific Support

  • Did the article or story mention the existence of research articles published in peer-reviewed journals documenting the efficacy of the intervention method discussed? If not, could it mean that no such research exists?
  • If so, did the writer comment on whether these studies were well designed? Are any limitations to the studies revealed?
  • Is this study or studies presented as an extension of existing work, or rather sensationalized as a “breakthrough,” keeping in mind that often interventions are pitched as a “breakthrough” when indeed, they are not?
  • On the other hand, does the author acknowledge the absence of underlying research?  Is this acknowledgement rightly framed as a concern or rather just potentially baseless but encouraging statements suggesting that “groundbreaking research” is coming soon?

Some Final Questions to Consider

  • Are other media outlets reporting on this story or topic? If yes, favorably or unfavorably? Did they consider research data in their articles?
  • Has ASAT responded to this article via its Media Watch efforts? Please visit this page to peruse our library of archived media watch letters.
  • Has the author consulted with an unbiased and knowledgeable individual for his/her input about the intervention described (e.g., someone who is not personally benefitting from the story or someone with a strong grasp of research)?

 

Sadly, inaccurate and biased portrayals of autism treatments in the media are abundant.  In our experiences, inaccurate portrayals often fall within the following themes:

  • Exaggerating the research support for an intervention for which little or no research exists;
  • Ignoring the research basis that may already exist for the treatment in focus;
  • Disregarding the relevance of science;
  • Disregarding position statements from various professional organizations that may warn against or discourage the use of a particular treatment; and
  • Failing to acknowledge research that does NOT support a particular intervention.

Being mindful of these themes will enable you to truly embody the principle of “Caveat Lector.”  Please consider liking our Facebook page as we routinely showcase our Media Watch efforts. ASAT’s Media Watch responds to both accurate and inaccurate media portrayals of autism treatment in an effort to increase access to effective treatment for the autism community.

Citation:

Celiberti, D., & Wozniak, R. (2016). Caveat Lector: Let the reader beware. Science in Autism Treatment, 13(1), 8-9.

Author Biographies:

David Celiberti, PhD, BCBA-D, is the part time Executive Director of ASAT and Past-President, a role he served from 2006 and 2012. He is the Co-Editor of ASAT’s newsletter, Science in Autism Treatment. He received his PhD in clinical psychology from Rutgers University in 1993. Dr. Celiberti has served on a number of advisory boards and special interest groups in the field of autism, applied behavior analysis, and early childhood education, and been an active participant in local fundraising initiatives to support after school programming for economically disadvantaged children. He works in private practice and provides consultation to public and private schools and agencies in underserved areas. He has authored several articles in professional journals and presents frequently at regional, national, and international conferences. In prior positions, Dr. Celiberti taught courses related to applied behavior analysis (ABA) at both the undergraduate and graduate levels, supervised individuals pursuing BCBA certifications, and conducted research in the areas of ABA, family intervention, and autism.

Renee Wozniak, PhD, BCBA-D, joined the ASAT Board of Directors in 2016. Prior to serving as a Board Member, Renée was a part of ASAT’s Externship, where she assumed the roles of Media Watch Co-Coordinator and Media Watch Lead. Renée received her Ph.D. in Special Education, focusing on Autism Spectrum Disorders (ASD) and Applied Behavior Analysis (ABA), from Arizona State University. She has worked in the fields of ASD and ABA in a variety of capacities since 1998, serving in public schools as a special education teacher, behavior intervention teacher specialist and district-wide autism trainer, and in clinical and home-based ABA programs as a research assistant, clinical/behavior interventionist, and program supervisor. Renée has trained families, therapists, teachers, teacher candidates, paraprofessionals, administrators, and others working with individuals with autism, and has instructed master’s level ABA, ASD, research and special education courses. She continues to stay involved in the field as a home-based ABA program supervisor, and as an instructor in ABA and ASD master’s degree programs. Renée is passionate about helping individuals with autism and their families by supporting and disseminating scientific research in autism treatment.

The Difference Between Saying A Child with Autism vs. Autistic Child

In the autism community, one of the most fiercely debated topics is how to refer to people on the spectrum. Here’s the difference between saying a child with autism vs. autistic child. While some prefer the term ‘people with autism’, others lean towards ‘autistic person’. Then there are those who remain indifferent, and prefer to take a tomato [tomayto]; tomato [tomahto] view of things. More than simply conveying meaning, words convey sentiment and ultimately shape how people are perceived.

A Child with Autism vs. Autistic Child

As a parent and someone whose life has been impacted by autism, you’re likely to have your own thoughts on the topic. The way you refer to your child, as either a child with autism or an autistic child, says something about how you see your child’s condition. 

Unpacking the term a ‘child with autism’

Autism is not something which defines our special children. This is the same thinking that would be applied when describing someone with any other illness or disability. A good example is when referring to a cancer sufferer, you’d say ‘someone with cancer’. This acknowledges that the person is more than their illness, and places emphasis on the fact that first and foremost they’re a person.

The well known autism blogger Autism Daddy had this to say on why he tends to use the terminology ‘child with autism’: “Anyway, the same way you say “she has cancer” I say “Kyle has autism”. It doesn’t define him as a person, it’s just something that he has and he has to live with and fight…the same way you fight cancer.”

Another important idea which this term conveys is that autism is merely one trait which makes up who a child is. It highlights the fact that there are many other facets and intricacies which make up a special child’s personality. Another parent blogger explains the significance of not focusing solely on your child’s autism: “I have a son with autism, twinkling green eyes, long brown hair, the cutest smile, an infectious laugh, and an apparent lifelong obsession for the freakin Wiggles. Not an autistic son.”

Unpacking the term an ‘autistic child’

The term ‘autistic child’ conveys the idea that autism is an integral and defining part of who a child is. This isn’t necessarily a negative way of describing someone, it’s simply a different way of perceiving the condition. The important distinction is that a term like ‘autistic’ implies that the child would be completely different if not for autism. In other words, autism makes a child who they are. Some also argue that this term is perhaps more reflective of reality as unlike an illness, autism will always be part of who this child is. And in that way, autism does make special children who they are.

Alex Lowery wrote a compelling piece in which he explains why he identifies more closely with the term autistic: “Personally, I don’t see anything offensive about the term “autistic.” I use it quite frequently to describe others and myself on the spectrum… Why is it considered offensive to say someone is autistic? And why is it better to say that they “have” autism? To me, that kind of implies that autism is an illness that needs to be cured — which it isn’t.”

Like Lowery, some people on the spectrum find the term ‘people with autism’ offensive because they perceive autism as a part of who they are. Unlike an illness, autism isn’t something someone simply ‘has’ and can recover from. Autism is a lifelong battle; an indelible part of one’s identity and the way one sees the world. And for those who perceive autism in this way, ‘autistic’ conveys these ideas clearly.

What does the research say?

In 2015, a variety of people were surveyed – including those with the condition, family members and professionals – to get a better sense of the autism community’s preferences.  The survey clearly shows that there has been a shift towards language which in some way identifies autism as an integral part of a person’s identity.

All those surveyed identified with terms like ‘on the autism spectrum’ and ‘Asperger syndrome’. However, a significant distinction can be found when it comes to terms like ‘autistic’ and ‘Aspie’. According to the survey, those with the condition prefer identity-first terminology like ‘autistic’ while family members didn’t.  The survey also found that terms like ‘low functioning’ and ‘classic autism’ are strongly disliked by most people surveyed.

What can we learn from all this?

It’s important to be aware of the language used to describe autism, and to take into account the preferences of those with the condition. But perhaps the biggest takeaway is that just as perceptions about autism are continually evolving and changing so too is language. We all need to be aware of this, and to accept that there isn’t such as thing as a correct way to describe autism. It’s largely a matter of personal preference.

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