Tag Archives: autism spectrum disorder
Ethics Part One: Data Collection and The Right to Effective Treatment
In the next few weeks I will be writing about ethics in the field of applied behavior analysis. This is the first part in a multi-part series.
Sometimes behavior analysts get a bad rap because we are so focused on the data. Somehow, there is a perception that writing down the numbers and graphing the information is “cold” or “unfeeling” towards the client. Over the course of my career, I’ve had more than one person say to me that I was more fun or more playful than they expected me to be as a behavior analyst. I’m not exactly sure where these misperceptions started, but today I want to get to the root of them.
As a BCBA, I am bound by the Professional and Ethical Compliance Code for Behavior Analysts. Within this code, it clearly states “Clients have a right to effective treatment.” This is something I take to heart every day in my work. And it’s the primary reason that I have my clipboard and am taking data. I want to ensure that the treatment I am introducing is actually effective. My data is what shows me when something is clearly not working, and allows me to be efficient with making changes the best benefit my client.
Clear, objective data allows me to be responsive to data and provide information in a responsible manner. Here are a few things to consider:
• When I graph data daily and look at that information, it’s very easy for me to see if a client’s performance has plateaued, is improving, or is actually getting worse. I can make adjustments based on the trend in the data.
• When all practitioners working with the client graph daily, I might (as the supervisor) see that the client is not performing as well with one practitioner. This might indicate that more training needs to occur. Or, I might see that one practitioner is getting far better results than the others. This might indicate that the practitioner is not recording data correctly or is doing something as part of the intervention that everyone should be doing.
• Data should be collected daily and the teaching programs should be clearly outlined. This way, if for some reason a practitioner abruptly stops working with the client or if the client moves, it is much easier for future practitioners to pick up where the last ones left off.
• Looking at data daily gives an idea of the individual client’s general trends in mastering new skills. For instance, last year I had a client who generally mastered new skills within one week, and his trend in the data was very consistent across all types of skills. So if we introduced a new program and he wasn’t mastering it for three weeks, it was an indication that we needed to re-evaluate what we were teaching or how we were teaching it. Being well-versed in your individual client’s learning patterns allows you to more clearly make individualized decisions!
We’d love to hear from you. What outcomes have you discovered in the relationship between being responsive to data and providing effective treatment for your clients?
WRITTEN BY SAM BLANCO, PhD, LBA, BCBA
Sam is an ABA provider for students ages 3-15 in NYC. Working in education for twelve years with students with Autism Spectrum Disorders and other developmental delays, Sam utilizes strategies for achieving a multitude of academic, behavior, and social goals. She is also an assistant professor in the ABA program at The Sage Colleges.
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Discussing Autism with Newly Diagnosed 9 Year Old
This week’s blog comes to us from clinical psychologist Lauren Elder and was originally posted on Autism Speaks as part of their Got Questions? series.
“Our son, age 9, was recently diagnosed with autism. He knows something’s up, but we’re not sure how to explain. Advice?”
Yours is a difficult situation shared by many parents. Children need to understand what’s going on, but the discussion needs to be appropriate for their age and level of development. Your openness will help your child feel comfortable coming to you with questions.
I recommend a series of ongoing conversations rather than a one-time discussion. Here are some tips for starting the conversation and preparing some answers for questions that your son may ask:
Explain autism in terms of your child’s strengths and weaknesses
You may want to focus on what he’s good at, and then discuss what’s difficult for him. You can explain that his diagnostic evaluation provided important information on how to use his strengths to meet his challenges. Focus on how everyone has strengths as well as weaknesses. Give some examples for yourself, his siblings and other people he knows.
Provide basic information about autism
Depending on your son’s maturity and understanding, you may want to continue by talking about what autism means. (See our “What Is Autism?” webpage.) You want to give your child a positive but realistic picture.
It may help your son to hear that autism is common and that there are many children like him. This can open a discussion about the strengths and challenges that many children with autism share. You might likewise discuss how individuals with autism tend to differ from other children.
For instance, you might explain that many children with autism are very good at remembering things. Some excel at building things or at math. Also explain that many children with autism have difficulty making friends and communicating with other people.
Don’t make everything about autism
It’s important to emphasize that your son’s autism-related strengths and challenges are just part of who he is and why you love him. Be sure to point out some of those special qualities that have nothing to do with his autism. This will help your child understand that autism is something that he has, not the sum total of who he is.
Assure your child of support
Explain to your son why he’s receiving the services he’s getting. For instance, you could tell him that he sees a speech therapist to help him communicate more clearly, or that he’s seeing a behavioral therapist to improve how he makes friends. Help him understand how you, his therapists and his teachers all want to help him. You can point out that we all need some help to become the best we can be. Some children need extra help learning to read. Some get very sad and need help in that department, etc.
Expect to repeat these conversations!
All children – and especially those with autism – need to hear some information multiple times. This doesn’t mean he doesn’t understand. what you’ve told him. Rather, revisiting these topics can be an important part of his processing the information.
Find role models and peers
It’s important for children with autism to spend time with typically developing peers. However, for children your son’s age and older, it can be a wonderful experience to spend time with other children on the autism spectrum. Consider enrolling your son in a play group or social skills group specifically for children with autism.
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Discussing Concerns With Family Members
This month’s ASAT feature comes to us from Peggy Halliday, MEd, BCBA and David Celiberti, PhD, BCBA-D. 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!
I am concerned that my two year old grandson may have signs of autism, but I am uncomfortable bringing this up with my son and daughter-in-law. Do you have any suggestions about how best to approach them?
It is natural to be unsure of how to share your concerns with your grandson’s parents. As is the case with many concerned family members, you may worry that such a discussion will not be well received or may cause some discomfort or tension in your relationship. If autism is a possibility, you would not want to delay screening and referral for possible evaluation and services because this may waste valuable time during which intervention can be most beneficial for your grandson. Even knowing that the best outcomes are associated with early diagnosis and intensive intervention, it still may be difficult to talk to your son and daughter-in-law if they have not expressed their concerns to you.
As a grandparent, you have already raised at least one child, so you probably have a good sense of what is typical in child development, and what is not. You may feel that your grandson is not making expected gains or may appear delayed in some areas such as communication or play relative to other children his age. Also, you may not have day to day contact so slower development of skills may be more apparent to you. This may create a sense of urgency in you that should be balanced with the need to support your son and daughter-in-law.
There are several important considerations. The way in which you approach your son and daughter-in-law will depend in large part on the quality of your pre-existing relationship and on the nature of how you communicate with one another. You may possess a relationship where difficult issues are frequently and easily discussed. On the other hand, this may not typify the type of relationship that you have. Regardless of your relationship, it is important that you bring this up from a place of love and concern, rather than judgment and blame. Many parents who have been carefully and respectfully approached by a relative later admit that they already had concerns of their own, and it was a relief to discuss them with someone else close to the child.
We would like to offer some concrete suggestions that may increase the likelihood that your discussion will be positive and constructive.
Planning Ahead:
- Take some time to think about what you want to share and how you want to frame your concerns. You might begin by commenting on the child’s strengths and praising the parents’ love and dedication to their child. It is important not to appear judgmental or focused only on the concerns.
- Plan your discussion ahead of time. Find a time and place when you will not be interrupted. It may be best when the child is with another caregiver.
- The role you take in the child’s life depends, of course, on geographic proximity, but be poised to offer concrete, practical help whenever possible. For example, you might offer to babysit siblings while parents pursue evaluation of the child, or offer a respite weekend of childcare so that your son and daughter-in-law might have time to discuss the situation without interruption. Whatever assistance you offer, the important thing is that your grandson’s parents perceive it to be helpful, so try and gauge their reactions carefully.
Having the Conversation:
- Try to keep the conversation free flowing. You may want to ask a few questions that will allow the parents to express their own concerns, if they have them (e.g., “I noticed that Billy became very upset when the phone rang. Has that happened before?” or “Does he seek you out when he is upset?”).
- Avoid labels and technical terms, which may trigger fear or upset from the parents. Focus instead on discussing milestones, which are observable indicators of a child’s development and accomplishments.
- In some cases, it may be beneficial to think about the discussion as a series of tiny conversations. This would be more appropriate if you have frequent contact with your son or daughter-in-law. It may then be helpful to share some observations that may provide a backdrop for later discussion (e.g., “Little Peter seems overwhelmed by noise levels.” or “I have noticed that he does not seem to know how to use words to get his needs met.). It may also be helpful to discuss observations surrounding worrisome or absent peer or sibling interaction.
- Emphasize the need to simply get any concerns checked out in order to “rule out” anything serious or to get some guidance and support in how to promote skill development. You might follow this up by mentioning that the earlier a potential problem is recognized and addressed, the easier it is to help the child.
Other Considerations:
- Most parents begin to become concerned that something may be wrong when their child is between the ages of 12 and 18 months. If the parents are beginning to realize a potential problem exists, you want to gently urge them not to delay a preliminary assessment and evaluation.
- You should never take for granted that developmental concerns will automatically be addressed during routine visits to the pediatrician. Refer parents to resources such as good websites and resources they can explore on their own (we emphasize the word “good” as there is a tremendous amount of misinformation about autism both in the media and on the Internet, particularly many false promises about autism treatment). The most helpful websites at this stage are typically the ones that discuss developmental milestones. Parents often know when to expect their infant and toddler to sit up or take their first steps, but they do not know when they should begin to babble with inflection, point to things they notice or want, imitate gestures, or show interest in another child.
- If the child is in a daycare, speak to his or her teachers and directors about the child’s progress. They should be keeping records on how the child is developing in different areas such as social interaction, verbalization, etc. They are also a good resource to use to help evaluate your child in a school setting.
The following websites include milestones checklists, booklets, and charts, and a wealth of other helpful information.
- Association for Science in Autism Treatment (ASAT): On the ASAT website, you will find extensive information about the scientific support (or lack thereof) behind the full array of treatments proposed for autism, research reviews, articles and guidelines on how to make informed choices, and weigh evidence in selecting treatment options, a section of frequently asked questions such as the one you asked, information about upcoming conferences of interest, and links to helpful sites and other science-based organizations.
- Centers for Disease Control and Prevention: The Act Early website contains an interactive and easy- to-use milestones checklist you can create and periodically update for children ages three months through five years, tips on sharing concerns with the child’s doctor, and free materials you can order, including fact sheets, resource kits, and growth charts.
- First Signs: The First Signs website contains a variety of helpful resources related to recognizing the first signs of autism spectrum disorder, and the screening and referral process. There is a directory of local resources for at least eight states and that number is likely to increase over time.
- American Academy of Pediatrics (AAP): The AAP website contains information for families, links to many other web sites, information about pediatrician surveillance and screening, and early intervention. This site contains great tools for pediatricians, as well as parents.
- Autism Speaks: The Autism Speaks website includes an Autism Spectrum Disorder Video Glossary of clips designed to help parents and professionals learn more about the early ‘red flags’ of autism, information about how autism is diagnosed, and a resource library. They also offer a free 100 Day Kit designed to help families of newly diagnosed children make the most of the first 100 days following a diagnosis of autism.
About The Authors
Peggy Halliday, MEd, BCBA, is a Board Member of ASAT, and serves as the JCH Director of School Consultation at the Virginia Institute of Autism (VIA) in Charlottesville, Virginia, where she has been a practitioner since 1998. Peggy oversees trainings for parents and professionals and provides consultation to public school divisions throughout Virginia. She also oversees BCBA and BCaBA training experiences. In addition to serving as a presenter at state and national conferences, including the Organization for Autism Research (OAR), Commonwealth Autism Service (CAS), and Association for Behavior Analysis International (ABAI) Peggy was selected as an autism expert for the “how-to” website monkeysee.com. Peggy has been on the board of ASAT since 2010 and serves on the Public Relations Committee.
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.
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Got Questions: Help for Socially Anxious Preschooler Who Has Autism
This piece originally appeared at Autism Speaks as part of their Got Questions? series.
My almost 3-year-old was recently diagnosed as having autism spectrum disorder. We struggle going places such as open gym or even the library because he doesn’t like other kids in his space. He does okay with adults, but other kids make him extremely anxious. How do I help him become more comfortable when other children are playing in the same area or with the same set of toys?
I commend you for seeking support for your son at this young age. Receiving a diagnosis of autism spectrum disorder can be challenging and confusing. Yet research shows that early intervention can help maximize cognitive, language and social development.
In my pre-doctoral work at UCLA and my post-doctoral training at Pediatric Minds Early Childhood Treatment Center, my colleagues and I have seen many forms of anxiety in children and teens who have autism. Like your son, many of them experience anxiety around other children, especially groups of children. Understanding the reasons for this anxiety can help select approaches that help.
For example, you mention that your son “does okay” with adults, but not other kids. This is very common. While adults tend to be more consistently friendly and accommodating, children can be very unpredictable. For instance, it’s not unusual for three-year-olds to grab toys from each other, cry, get very close to each other and just be loud! This can be particularly anxiety provoking for someone with autism.
In addition, many people with autism are hypersensitive to sensory input. As a result, public places such as open gyms or even a lively children’s library can be over-stimulating. The sights, sounds and smells can feel intense, uncomfortable and overwhelming. Understandably, this can lead a child to avoid these environments and become upset in the midst of them.
I strongly encourage you to work with your son’s therapists to develop a personalized intervention plan. Children with autism who are under age 3 can qualify for such services through their state’s Early Intervention program. After age 3, these services can be accessed as part of an Individualized Education Plan (IEP) through your school district.
Also see “Access autism services,” for more information on early intervention and individualized education services.
Fortunately, many programs are available to help young children with the type of social anxiety you describe. These include play-based forms of Applied Behavioral Analysis, occupational therapy that includes sensory integration, communication-focused intervention, social skills play groups and other options. Many children do best with a multidisciplinary approach that combines two or more of these methods with close collaboration among the care providers.
Also see, “Autism therapies and supports,” in the “What is autism?” section of this website. While every child has different needs, here are some strategies you can try – ideally in collaboration with your son’s therapists.
Practice. Are there specific social situations that tend to trigger your son’s anxiety? For instance, does he get upset when another child tries to take his hand or pull him into a game? Consider teaching him simple phrases he can use in these situations. For example, a simple “no.” You can also teach and practice toy sharing and turn taking at home. If your child enjoys play dough, for example, place just a few pieces on the table and take turns modeling each of the pieces, handing them back and forth. This can help him learn sharing and even waiting for gradually increasingly periods before getting what he wants. These skills can be difficult to learn. So start with brief periods of waiting and offer plenty of praise along the way. Providing this type of structured opportunities to practice social skills can encourage your son to use them in social settings.
Start slow. A room full of children may be too overwhelming for your child to use the new skills that he’s practiced with you at home. Consider hosting a playdate with one other child who is relatively calm and engaging. Sometimes, a slightly older child will understand how to be more accommodating.
In selecting where to have the playdate, consider your son’s comfort level. You might start at home or maybe a relatively quiet place at a nearby park.
Choose some relatively structured activities such as games or sharable toys that your child knows and likes. Keep the playdates relatively short to further the chances of success.
Bring the familiar. When entering a loud or anxiety producing environment, a comfort object may help provide a sense of security in an otherwise overwhelming environment. Consider allowing your son to bring a familiar toy, stuffed animal or book. Another possibility is a toy or game that actively engages his attention – and so directs his attention away from the hubbub around him.
Be patient. I encourage parents to appreciate that their child’s stage of development may not match what’s typical for his or her age. This is particularly true of social development in children on the autism spectrum. By focusing on small steps, you can foster your child’s confidence and decrease the likelihood of setbacks.
Remember, your child – like all children – is continually developing. You can support his social development – while decreasing anxiety around other children – by providing ample opportunities for success.
About The Author
Dr. John Danial is a 2012 Autism Speaks Weatherstone predoctoral fellow. Dr. Danial’s fellowship supported his work with mentor Jeffrey Wood at the University of California, Los Angeles, developing and evaluating behavioral interventions that reduce anxiety in children, teens and adults with autism and low verbal skills. He is currently completing his post-doctoral placement at Pediatric Minds Early Childhood Center, working with families of children with developmental delays and social-emotional challenges.
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NAVIGATING SESAME PLACE WITH A CHILD WITH AUTISM
This week’s post originally appeared on INCLUDEnyc,
As a mom of a three-year-old with autism, sometimes I’m hesitant to visit places that are overcrowded with people. I always worry that my son Julian will become overwhelmed and have a meltdown. Recently, his daycare took him on a trip to Sesame Place, and despite my worries, I decided to attend. I also invited a friend who has a five-year-old son with autism named Brandon (who is one of Julian’s BFFs).
I created a social story for Julian and told him about all of the characters he would see when we went there. I let him know that we would be playing in the water, going to see Elmo, and that we were going to go on fast rides that went up and down. I spoke to him about Brandon coming with us and how we would be taking a bus. He was very excited and told me he was very happy; or, in his words, “Mommy, Juju happy” (he refers to himself in the third person and always calls himself by his nickname).
The morning of the trip it was a little shaky; we took a car to his school (he was not happy about this because Mommy had only mentioned a bus). When we got on the bus, he was upset and overwhelmed with all of the new changes in his routine. I won’t lie — I was feeling a little overwhelmed myself. It took about 15 minutes for him to calm down, but after that he watched the cars as they drove by and ate lots of snacks, watched parts of a movie that was playing, and climbed all over me. In the end, he didn’t scream and cry the whole time, he didn’t get sick, and best of all, we made it in one piece.
When we arrived at Sesame Place we went straight to the Welcome Center, which was right by the entry gates and, oddly enough, not packed. I told the woman at the desk that we were traveling with two amazing little boys with autism. We were asked basic information like our boys’ names, birthdates, heights and addresses and we were each given a plastic wrist band with the numbers 1-3 on it (each number had a tab that ripped off the band) for water rides. This wristband allowed us to enter the rides through “Abby’s Magic Queue” and skip the long lines 3 times (good for 4 people each time). We were also given a small card with the numbers 1-6, which allowed us to ride 6 dry rides (good for 4 people each ride). We also rented a double stroller for less than $20 which allowed us to stroll both boys and carry our bags easily.
First we did the water rides. We went on a raft/slide ride near the entrance about 4 times in a row. Lucky for us they didn’t ask for any of the tabs. Both boys had a hard time waiting their turn but equally loved the ride; the smiles on their faces were priceless. Next we did the lazy river (for this ride they took one of our tabs); we were able to do this one twice as well. There are some parts on the lazy river where you will get splashed or sprayed by water; we just used ourselves as shields to block them (none of the boys like water in their faces). By the time we finished the lazy river, it was time for lunch. We had chicken fingers and French fries (which only came out to about $30 with a souvenir cup and plate).
Next we went on the dry rides and did just about everything in the Elmo’s World section of the park. For the dry rides we went to the exit and handed our cards to the attendant. They crossed off one number from the card and we were allowed to board the ride first. We had lots of fun on the spinning cups and air balloons. Apparently Julian has a thing for rides that go high in the air (me, not so much; I am afraid of heights). We also went to take a picture with Abby and Elmo, and we were super lucky that there was no line at all.
When it was time to leave, we got to watch some of the parade and wave to some of our favorite characters. Julian was very upset that we had to go and started to cry. Brandon was able to help soothe him by taking his hand and telling him that he was going to be ok. Julian slept the whole ride back on the bus after having some snacks and water. At the end of the day, we actually had a great time despite the normal meltdowns and moments of overstimulation. I was so happy that he had gotten to experience Sesame Place just like any other kid would.
I wrote this blog to encourage other moms of children with disabilities to try and worry less about all the things that can go wrong when experiencing new things, and to take the risk and go for it. Inclusion is one of the most amazing things that places like Sesame Place offer, and best of all, there are supports in place to support our kids. Of course there are going to be bumps in the road, but it’s nothing different than the ones we face every day. Go out, try new things, and follow your child’s lead; the worst thing that can happen is a meltdown (we deal with these anyway). But the best thing that can happen is the making of incredible memories.
About The Author
Millicent Franco is the Program Intake Coordinator for INCLUDEnyc. Millie helps coordinate services for Spanish bilingual families through the help line. Prior to joining INCLUDEnyc, she was a Family Support Worker via Healthy Families New York where she provided families with child development information/activities in order to help create a community of informed parents raising secure children. She also brings previous experience as a Case Manager for Turning Point’s transitional housing program. She is the proud mother of an amazing little boy with Autism and wants to help break the stigma associated with having special needs.