We want to take a moment and thank all of our readers for following us on our journey. We are pausing this week to spend time with our families. We will resume our writing on January 2, 2012. May your holiday season be filled with love and tantrum-free.
Archive for December, 2011
“My parents were told to put me in an institution…They are… it’s called Harvard. I am recovered thanks to them and TACA.”
In case you haven’t been following the news out in California, the LA Times recently ran a four-part series on autism. One part focused on recovery and you can read it here. If you want to read the other articles, you may find them here.
We are happy to hear people talk about the possibility of autism recovery despite its controversial nature.
We know recovery is possible and we have personally seen children recover. So, we thought we would review a peer-reviewed article on autism recovery.
Neuropsycholgy Review published the article and Molly Helt, Elizabeth Kelley, Marcel Kinsbourne, Juhi Pandey, Hilary Boorstein, Martha Herbert, and Deborah Fein served as authors. You may find a copy of the article here.
The authors first defined “recovered”.
- First, the child’s medical or psychological records must have a convincing history of autism spectrum disorder.
- The medical or psychological records must demonstrate that the child had a history of delayed or slowed development.
- The child must currently be learning and on a typical developmental trajectory in all areas.
- The child must no longer meet the definition of autism spectrum disorders as measured by an independent psychologist.
Predictors Associated with Recovery
After defining recovery, the authors go on to review research articles describing recovery. Following the review, the authors discuss predictors of recovery. By this, they sought to examine pre-treatment characteristics that were associated with positive treatment outcome. Before reviewing the predictors, it is important to note that the predictors are associated with positive outcome and do not guarantee recovery. It is also important to note that children who lack one or more predictors may still go on to recover.
- Early communication and language
- Motor development
- Rate of learning after intervention begins
Predictors Associated with Poor Outcome
Next the authors review characteristics that have been associated with poorer outcome. Again, these are merely associations and do not guarantee that a child who exhibits these traits will have a poor outcome.
- Accelerated head circumference
- Pre-existing condition such as Down syndrome, tuberous sclerosis
- Other sensory impairments (blindness, deafness)
- High rates of stereotypical behaviors
Treatments Associated with Recovery
Applied Behavior Analysis (ABA) is the treatment most often associated with recovery from autism. Research has shown that intensive intervention (40 hours per week) for a period of 2 years or more is most often associated with recovery.
The authors discuss other treatments with promising outcomes such as pivotal response training and the Denver Model. The authors also discuss the importance of biomedical interventions to address the illnesses often seen in children with autism (e.g., GI disease, food allergies, and metabolic disorders).
Recovery from autism is possible. While many factors are associated with positive outcome, scientists have yet to find the one approach that works for every child. Even with intensive intervention, there is no guarantee that a child will recover.
Additional Information on Recovery
Talk About Curing Autism (TACA) has quite a few recovery stories available on their website. We used the Zach’s story for our photos in this blog. If you would like to see some videos on recovery, we like the video produced by the Center for Autism and Related Disorders (CARD), Recovered. You may also find these videos at TACA helpful.
Posted in Feeding Intervention/Feeding Therapy, Intervention, Picky Eater, What Works Wednesdays, tagged ABA, Applied Behavior Analysis, Applied Behavioral Strategies, Autism, BCBA, challenging behavior, elopement, feeding intervention, feeding therapy, food selectivity, Picky Eater, picky eating, self injurious behavior, SIB, tantrums on December 21, 2011| 4 Comments »
Hi and welcome to “What Works Wednesdays” where we share a success story from one of our clinical cases. All names have been changed to preserve the privacy of the child and family. Our intent is to show readers how successful ABA can be.
Today’s case is about a little girl named Bailey. Bailey was 7 at the time we served her. She was a petite and very quiet. She was also diagnosed with autism. Bailey enjoyed visual stimulation. She had her favorite pompom present at every meal. She also enjoyed watching movies like Toy Story and Finding Nemo.
Scheduling therapy sessions for Bailey was a bit complicated because of our schedule and her mom’s work schedule but we managed to make it happen. We started therapy on a Friday and her mom kept her home from school. Her teacher and BCBA from the school attended the breakfast session so they would be able to support Bailey when she returned to school the following week. Her ABA therapist also attended several sessions in order to fully support Bailey when intensive therapy was completed.
Prior to therapy, Bailey ate few foods. Like most children with autism, she preferred the white and crunchy diet. She also liked to have ice cream. Bailey was also a grazer. She preferred to eat small snacks throughout the day without actually ever sitting for a meal. As if this wasn’t bad enough, her family had never enjoyed a family meal in a restaurant due to her challenging behaviors and restricted eating.
Day 1: Lots of Behaviors
For breakfast on the first day, we had pancakes, grapes, carrots. Bacon was a highly preferred food so we made it available as a reinforcer for her. Right from the beginning, Bailey was willing to chew and swallow new food! This is unusual as most of our children are so frightened of new food that initially, they will only agree to lick it or touch it to their tongues. So Bailey at the tiny bite of pancake and chased it with bacon. Next we offered a tiny bite of grape. Again, she ate it and received a bit of bacon. This was followed by carrot. Again, we had success! On the very first session of therapy, Bailey ate 26 bites of food! Don’t get us wrong. It wasn’t a party. Sweet little quiet Bailey, screamed, cried, aggressed towards us, and engaged in self-injurious behavior (hitting herself). She also tried to elope from the table but we just asked her to come back and she did. We did not allow her to use any of those behaviors to get out of trying the new foods.
After we left, Bailey’s mom reported that she asked for her preferred foods. She told Bailey to wait until lunch. We came back a couple of hours later offered chicken, hot dog, more carrots, and bananas. We used bacon as the reinforcer again. Bailey chewed and swallowed 38 bites of food. Bailey’s challenging behaviors were much better during this session. She only engaged in a few instances of crying and elopement.
For dinner, Bailey ate sweet potato, mushrooms, pork, and potato. We used a KBar as a reinforcer. This session was a little harder because Bailey was not as hungry. She only swallowed a couple of bites of new foods. She also engaged in a new behavior: gagging! She had approximately 50 gags and she also expelled food many times. Her screaming increased as did her elopement.
Day 2: Improvement
We returned the following day and started all over again. For breakfast we offered watermelon, banana, waffle, and sausage. We continued to use bacon as a reinforcer following really non-preferred foods. Bailey swallowed 23 bites of food. She continued to engage in a lot of screaming, particularly around the sausage. however, her aggression, gagging, and expelling were much better.
Lunch was another improvement. We offered orange, pizza (yes, some children dislike pizza!), mashed potatoes, avocado, and a muffin. Bailey ate 37 bites of food! While she was a little “fussy” the screaming was gone and she only expelled 2 bites.
We continued to see more success at dinner. We started the therapy session and then mom moved in to the driver’s seat after the first few bites. We usually see an increase in behaviors when the parents take over and this was true for Bailey as well.
Her mom Bailey tried to run away and she screamed. She also started packing (holding) the food in her mouth. Silly girl! She didn’t realize that mom was in on it too! Mom held her ground and eventually Bailey ate for her as well. She ate pound cake, strawberries, cucumbers, and chicken parmesan. Bailey ate 27 bites!
Day 3: Discharge!
The next day mom supervised breakfast of egg, english muffin, ham, and cantaloupe. Bailey ate 25 bites of food but her behaviors were testy. She cried, fussed, and even threw a bite of food. Mom stood firm and eventually, the behaviors ceased.
Lunch was great as well. Bailey ate macaroni and cheese, grilled cheese, peas, and raspberries. For those of you who have not experienced picky eating, it may surprise you to know that children with autism and picky eating may avoid even the most preferred foods! Bailey ate 52 bites! She engaged in some fussy behavior but the screaming and aggression were gone.
For dinner, we all went out to a restaurant to celebrate. Bailey’s mom, dad, brother, and I all sat down together. Bailey ordered nachos with chili, broccoli, baked ziti, and french fries. It was a sight to see. Bailey ate 45 bites of food and she engaged in zero problem behaviors.
The next day, Bailey’s mom wrote to let me know that she ate some banana, a slice of bread with cream cheese, and her favorite bacon. There were no behaviors and she was off to school. School staff continued to support her good eating habits and Bailey has flourished. Bailey still needs encouragement to eat new foods. However, her mom has now learned how to successfully support her in trying and learning to like new foods. Intensive intervention is the boot camp that gets kids over the hump. The parents and teachers must continue to support the therapy after we are gone.
Seven months after therapy, Bailey’s mom wrote to us to let us know that Bailey had gained 7 pounds. Amazing! Congratulations to Bailey and her family. Your hard work has paid off.
Posted in Assessment, tagged ABA, Assessment of Basic Language and Learning Skills, Autism, Autism spectrum, BCBA, challenging behavior, FBA, functional behavioral assessment, SKILLS, Texas Education Agency on December 20, 2011| 5 Comments »
Yesterday we discussed questions to ask an ABA provider during an assessment. Today we will address what to expect in an ABA assessment. We would like to clarify that this process should not be limited to ABA providers only. A full and initial evaluation of a child as part of the special education process should also follow this model.
Currently, the field of ABA has no rules and regulations regarding initial assessments for ABA services. Thus, each agency will follow its own assessment protocol. Early intervention and special education services, on the other hand, have specific rules and regulations regarding assessments. You will find more information about those rules here for children age 3-22 or here for children under the age of 3.
We will attempt to describe a variety of assessments commonly conducted as part of an assessment for children with autism. Our advice to you is to become informed so that you know how to ask for assessments that your child needs.
We have described the different types of assessments on our website. In summary, your child should have a formal diagnosis so that the severity of autism is documented. The diagnostic assessment should be conducted each year as one measure of your child’s progress. The diagnostic assessment should be completed by a licensed psychologist. Texas Education Agency has a helpful list of diagnostic and screening tools related to autism.
Following the diagnostic assessment and before services begin, your child should have a comprehensive developmental assessment for every area of development. Our recommendation is that norm-referenced assessments be completed annually as a second measure of progress. At a minimum, your child should be assessed in speech and language, adaptive skills, fine and gross motor, social and emotional development, and cognition. The Texas Education Agency has provided resources related to developmental assessments here.
The developmental assessments provide information about where your child is functioning compared to his/her same age peers. Norm-referenced developmental assessments should not be used to develop program goals and objectives.
Your ABA provider may provide some or all of the aforementioned assessments depending on the type of personnel employed by the agency. In order for an agency to develop a program for your child, other types of assessments will be needed. These are the assessments we will focus on.
A number of criterion-referenced assessments are available for use by ABA providers. The Brigance is a widely used assessment with substantial research to support its reliability and validity. This assessment provides information about the skills children have acquired as well as what skills should be learned next. The assessment covers all areas of development and may be repeated as a measure of progress towards goals and objectives. The Brigance has been used to assess children with and without disabilities and is not autism specific.
The Verbal Behavior Milestones Assessment and Placement Program (VB-MAPP) is an autism specific assessment that may be used to determine which skills a child has mastered as well as which skills should be taught next. The VB-MAPP focuses on language and challenging behaviors. Thus, additional assessments should be used in combination with the VB-MAPP. Peer-reviewed research studies regarding reliability and validity are still needed.
The Assessment of Basic Language and Learning Skills (ABLLS). The ABLLS provides information regarding skill development in a number of areas including language, social interaction, self-help, academic and motor. Peer-reviewed research studies regarding reliability and validity of the measure are still needed.
We mentioned the SKILLS assessment and curriculum yesterday. This tool assesses skills in all areas of development. Unlike the ABLLS and VB-MAPP, peer-reviewed studies have been completed on the SKILLS.
Providers of services for infants and toddlers may use an assessment called the Hawaii Early Learning Profile (HELP). This tool has substantial peer-reviewed research related to its reliability and validity. The tool is also comprehensive and assesses all areas of development. The tool is designed to develop IFSPs and would thus be appropriate when developing your child’s ABA program. However, the assessment should not be used to determine your child’s eligibility for services.
Your provider may use other measures for program development. These may include checklists, rating scales, and parent report/interview.
Other standardized assessments are available for your ABA provider to complete. These assessments may or may not be used during the initial assessment. They will most certainly be used over the course of the program.
When children engage in challenging behavior, a functional behavioral assessment (FBA) is required in order to assess the behavior and develop an appropriate Behavior Intervention Plan (BIP). At a minimum, the assessment will include a record review, parent/teacher interviews, and direct observations of your child. Providers may also use rating scales completed by parents and/or teachers. Finally, providers may complete a functional analysis where conditions are manipulated to assess how environmental changes affect your child’s behavior.
At some point in a program, providers will complete preference assessments for your child. Formal preference assessments include the systematic presentation of items to determine if your child interacts with or engages with various stimuli. Informal preference assessments may be completed on a daily basis in order to determine how to best motivate your child to work. The provider may simply watch how your child uses toys and which toys your child gravitates toward during free play. Providers may also ask you to limit your child’s access to highly preferred toys and activities to keep him/her interested in them during therapy.
ABA providers, early intervention personnel, and school staff may also complete a number of informal assessments. Most likely, they will request copies of records from your child’s medical and related service personnel. A comprehensive record review is almost always utilized during program development.
Providers may create agency specific forms they use when developing programs. Providers may also ask families to complete intake forms in order to gather information from parents and other providers. Completing and returning these forms as soon as possible will help your provider prepare for any upcoming visits or assessments.
Providers may complete observations of your child in a variety of settings such as home, school, and community. Providers will be able to develop better programs after observing your child in as many different settings and activities as possible. It will be important for providers to observe your child under his/her best performance. However, it is equally important for providers to be able to see situations when your child is not successful.
Providers may also complete skill probes. These are mini-tests where the provider asks your child to engage in a skill to see if your child complies or if your child is capable of performing the skill. For example, the provider may introduce a toy set. After playing with your child for a few minutes, the provider may ask the child to find a red car. The provider may document if the child completes the skill as asked. Skill probes may be conducted prior to program development. However, they may also be completed within the first couple of weeks of your child’s program.
As we have stated, this list is certainly not comprehensive or all-inclusive. Hopefully, it will help prepare you for your child’s initial assessment and program development.
Has your child recently completed an assessment? What would you add to help first timers through this process?
Hi and welcome to Ask Missy Mondays where I respond to email questions from readers who have questions about behavior. Today’s question comes from Tracy, who asks:
“My child is having his first ABA Assessment soon, what questions should I ask? What should I expect?”
Tracy, thanks for asking! You have been an amazing help to me on Twitter so helping you in this way is the least I could do. You have definitely opened a can of worms with this question but hopefully I can give you some insight.
Your first question to the provider should be, “Do you believe in and work towards recovery from autism?” I realize that this question may offend some readers with autism. Please understand that I would never suggest that any individual who is capable of self-advocating be treated without consent. However, for young children, we know that the symptoms of autism can be successfully treated so that the child can go on to function in school without special education. The child can go on to function in adulthood without supports. The recovery rate is not high (around 48% of treated children). However, even if children do not fully recover, early intervention can lead to great improvements in IQ, adaptive behavior, and communication. “Shoot for the moon. Even if you miss it, you will land among the stars.” -Les Brown.
Reinforcement and Punishment
The second question you should ask is, “What is your philosophy on reinforcement and punishment?” A good ABA team will use a variety of reinforcers to help your child learn. Over reliance on edible reinforcers can be problematic. We have written a little bit about reinforcement here. Check it out. Preference Assessments are a must. Read about them here.
A good ABA team should deflect the question on punishment and talk more specifically about using reinforcement to address challenging behavior. Do not get me wrong. Punishment strategies are important and warranted in many cases. However, in a comprehensive ABA program, the team should be modifying antecedents to prevent challenging behavior, teaching replacement behaviors for challenging behavior, and severing the association between reinforcement and challenging behavior. New, appropriate behaviors should be reinforced and challenging behaviors should not be reinforced.
The third question you should ask is, “What curriculum do you use?” My favorite response to this question is “We use a variety of resources to determine what to teach your child.” Any agency who relies on one tool to drive their programming for your is setting your child up for failure. Your child with autism needs a comprehensive program to address all areas of development including receptive and expressive communication, fine and gross motor, social and emotional skills, pre-academic and academic skills. As your child ages, other skills such as pragmatics, perspective taking, and theory of mind skills will be important.
An exception here is the SKILLS assessment and curriculum. Having worked for CARD for several years, I know that the SKILLS curriculum was developed using multiple resources. CARD also completed several research studies on reliability and validity of the measure. While the curriculum may appear to be one tool, it is actually quite comprehensive.
The fourth question you should ask is, “What is your philosophy on inclusion?” The research on ABA (and on inclusion) supports that children should be educated alongside their typically developing peers as soon as possible. Depending on the severity of your child’s autism, he/she may need initial instruction in a very small, distraction-free environment. Once your child learns how to learn, he/she will be transitioned to a larger room with distractions. Once your child is able to imitate and learn from watching others, he/she needs to start regularly scheduled play dates to practice skills with other children. Finally, your child should be transitioned to a preschool with support. The support should be systematically faded until your child is functioning in general education with no supports.
Finally, your last question should be, “What is your philosophy about assessment?” This is a loaded question but their response will be informative. We have written a little bit about assessment here. The bottom line is that an agency should either refer you to or assist you with a variety of assessments. Obviously, the first is the diagnostic assessment where your child received the autism label. After that, a comprehensive developmental assessment is needed so that your child’s current level of functioning is assessed compared to his/her peers. This assessment should be norm-referenced and it should occur about once per year so that you will see how your child is progressing.
The agency should complete informal preference assessments daily. This will help them better understand how to motivate your child to work. Formal preference assessments may also be needed initially and periodically throughout your child’s program.
The agency should collect on-going data to monitor your child’s progress towards his/her learning objectives. The data should be collected by each therapist for every therapy session. Data should be graphed following each therapy session. The graphs should be examined to ensure that your child is making adequate progress. Changes should be made to your child’s program if he/she is not making adequate progress.
Supervision and Clinical Team Meetings
Your child’s program should be supervised by a BCBA with extensive training and experience in autism. The supervisor should oversee and train all the therapists on your child’s team. The supervisor should hold clinical team meetings at least twice per month and those meetings should include every therapist and both parents. When possible, related therapy providers (SLP, OT, PT), and school staff should be invited to attend.
The supervisor should also conduct visits of your child during regularly scheduled therapy sessions to ensure that the program is being implemented as planned.
I realize that this was a long-winded answer. Hopefully, it will help you prepare for your meeting! I hope it goes well. We can also schedule some Skype time if you want to talk more.
Readers, if you have a question that you need help with, email me at askmissy at appliedbehavioralstrategies dot com.
This cartoon is a classic. We have been using it in our parent and teacher training workshops for several years now.
We know that it does not have to be this way. Research has shown that when children have challenging behavior, appropriate assessment and intervention will work to decrease the behavior. If you are the parent in the picture above, ask your child’s teacher to get help from a Board Certified Behavior Analyst (BCBA or BCaBA). The behavior analyst will complete a functional behavioral assessment (FBA). The behavior analyst will work collaboratively with the parents, teacher, related service personnel, and possibly even the child (depending on age) to develop a behavior intervention plan (BIP) to address the behavior. The behavior analyst will help train everyone to implement the plan. Finally, the behavior analyst will assist in developing a data collection plan to monitor progress.
If you are the teacher in the picture above, contact your school’s behavior analyst to get help with the FBA and BIP. It will make your life so much easier in the long run.
Have you ever felt this way at one of your parent teacher conference meetings? Has your child had an FBA and BIP? Please share!