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Parents: Preparing for the Winter Holidays

The winter holidays can be a difficult time for children with ASD and their families. Difficulties may arise from too much free time, changes in routine, and gift giving.


Most school-age children are off school for two to three weeks for the winter holidays, leaving six to eight hours of unstructured time for families to fill each day. You’re not alone if you dread the school holidays; past experience has taught you that a lot can go wrong in two or three weeks. If you haven’t already done so, now is the time to plan how you will structure that free time for your child with ASD. Plan activities for each day of the vacation, and create simple visual supports (e.g., print a picture of a park from the Internet if you will be taking your child to the park) to prime your child about the activities you have planned. If possible, allow your child to help decide on the activities you are planning. During the vacation, review the schedule for the day the night before and on the morning of the day to which the schedule refers. Of course, you can’t plan for everything, and you will invariably have to make changes to the schedule. Let your child know of any changes as soon as possible, and provide visual supports to make the changes concrete for your child. If your family will be traveling during the vacation, changes to the schedule such as flight delays are even more likely. Prepare your child that more than likely, there will be changes to the schedule, perhaps through the use of a social story. Don’t forget to bring an assortment of things for your child to do such as coloring, books, games, or a laptop computer. plane travel.jpg
Where your child will go and what he or she will do in a day are not the only changes that may be upsetting during the winter holidays. Many people visit with friends and relatives during this time that they rarely see during the rest of the year. These people may feel like strangers to your child, and he or she may behave accordingly. Forcing your child to hug Aunt Mary because “She came all the way from Boston to see us,” is likely to induce challenging behaviors from your child and to make Aunt Mary very uncomfortable. Aunt Mary insisting on a hug may produce similar results. Inform Aunt Mary that your child may view her as a stranger and she should not be offended before Aunt Mary arrives at your home (or you at hers). If possible, show your child pictures of friends and relatives you will visit and review the names of these people before the visit.

Mansnowman.jpgy people exchange gifts during the winter holidays. This can be a source of great disappointment for family and friends of a child with ASD. As a behavior therapist, I once special ordered a beach magnet set for a child I worked with one-on-one, three hours a day, five days a week. I was sure he would love it. I imagined all the exciting language he would produce when we played with those magnets. I heard in my mind spontaneous comments he would make and squeals of delight he would emit. As you probably guessed, the boy opened the magnet set, said nothing, put it down, and picked up another toy. I tried to engage him with the magnets through my enthusiasm. Nothing worked. I have heard similar stories from parents and educators time and again. Even when the child showed intense interest in a toy when it belonged to someone else or requested the toy, the same toy is often of little interest to the child when received as a holiday gift.  As a parent, there is nothing you can do to prevent this. If you have a neurotypical child, you may have complained that he or she only played with a new toy for a day and lost interest. This is part of being a parent, but it is especially disheartening when your child is on the Autism Spectrum, has limited interests, and you worked so hard to find that special gift. Remember that your effort is special regardless of the immediate reaction to the gift. And time may reward your effort. I heard that the beach magnet set became a preferred toy for the boy I worked with over a year later.

Do you live in Wisconsin?

000_52_Eric_reading.pngThe cost of treatment for children with autism is so high, and even if you are lucky enough to find a good intervention for your child, it is hard to get the money. 

LOGO2_Sm.pngIn case you were thinking that nobody out there wants to help, check out this organization, Angel, Inc., who provides grants to individual families who have children with autism to get help with treatment!

I thought this was such a great thing to offer families, but you have to live in Wisconsin.  Funding is for up to $500 and you can apply quarterly!

For those of you who think TeachTown might be a good fit for your child, this is more than enough to cover an annual subscription!

They also provide education and networking for families who have children with autism.

000_25_Abby_smiling2.pngYou can help with this great cause by buying your Avon products through www.youravon.com/jmongillo and 20% will be donated to Angels, Inc. to help more families. 

If you know about other organizations like this in other states, please post here to let others know!

Evidence-Based Practices

B & E.JPGThere is certainly no shortage of interventions for autism.  However, not all treatment options have evidence to support them, and it is important for parents and professionals to look at the research behind various treatment options before choosing a program for their child.  This will put more pressure on those who develop new interventions to base their products on existing research and to continue doing research on their products. 

Manya & E.JPGThe National Research Council recommends early, intensive intervention for children with autism consisting of 25 hours of structured learning for each child.  The difficulty for parents and professionals is choosing how to fill these hours of intervention for their child.  Today, many efforts are taking place to help educate and evaluate treatment programs, but these efforts still lack the funding and the awareness to make them happen sooner rather than later.classhands.gif

One of the biggest problems in evaluating treatment approaches is that there is very little research comparing one approach to another or looking at combinations of interventions that might be effective.  In reality, professionals typically choose a variety of treatment approaches (e.g. Discrete Trial Training + Floortime + PECS) and make their choices based on what they think might be the best fit for the child’s individual needs.  Researchers need to make this type of study a priority or come to a consensus on how to evaluate treatment programs. 

Another obstacle is that people on the child’s treatment team may have very different philosophical ideas about treatment making it really tough to figure out what is best for the child.  Ultimately, the child’s needs are best served by the team coming to an agreement, so that the child has some consistency across treatment settings.

dmbtest.gifThe ultimate way to determine if the child is getting appropriate treatment is to measure the child’s progress with each new approach that is implemented.  Even less data-driven approaches must provide ways to assess how the child is doing.  Objective measurements are best and you are more likely to get reliabilty among team members.  

The National Standards Project is one of the best strategies for dealing with this issue - I talked about this in a previous post and am very excited about their initiative.

The Center for Evidence-Based Practices: Young Children with Challenging BehavioB & E 2.JPGr, which is funded by the Department of Education aims to raise awareness and implementation of positive, evidence-based practices and to build an enhanced and more accessible database to support those practices.  Their mission is not specific to autism, nor should it be, but has a huge impact on the autism community if they are able to achieve the goals that they state.

They are currently conducting research to address this mission:

Research Program Emphases

  • Longitudinal, multi-site study to investigate the developmental patterns, preventive factors, and predictive variables related to young children’s challenging behavior.
  • Effective services and interventions for young children with challenging behavior and their families
  • Administrative operations and systems variables
  • Personnel preparation and utilization of evidence-based practice

Positive Behavior Support (PBS)

index_r2_c1.gifThe goal of PBS (Positive Behavior Support) is to apply the principles of behavior analysis in the community to reduce problem behaviors and increase appropriate behaviors which promote a rich lifestyle.  PBS is a type of ABA and is not necessarily in competition (despite the controversy among some that they are different approaches) with other types of ABA as it is often very suitable to use in conjunction with other treatments such as Discrete Trial Training, Pivotal Response Training, Picture Exchange Communication System, and other popular ABA techniques.  PBS typically refers more to dealing with challenging behaviors such as aggression, tantrums, self-injury, etc. and focuses on teaching more appropriate replacement behaviors such as functional communication.

The Association of Positive Behavior Support describes PBS and provides success stories and useful links and resource guides that you can download.  They also host an annual conference, the next one is March, 2007 in Boston, MA and they are now accepting proposals for presentations.  They also have a good newsletter which is free to download and print.

From the Association of Positive Behavior Support:index_r1_c1.gif

Positive behavior support (PBS) involves the changing situations and events that people with problem behaviors experience in order to reduce the likelihood that problem behaviors will occur and increase social, personal, and professional quality in their lives. It is an approach that blends values about the rights of people with disabilities with a practical science about how learning and behavior change occur.  PBS is a set of research-based strategies used to increase quality of life and decrease problem behavior by teaching new skills and making changes in a person’s environment. Positive behavior support combines valued outcomes, behavioral and biomedical science, validated procedures; and systems change to enhance quality of life and reduce problem behaviors such as self-injury, aggression, property destruction, pica, defiance, and disruption. The overriding goal of PBS is to enhance quality of life for individuals and others within social settings in home, school, and community settings. 

biting.jpgPBS is now used in many different situations and settings and with different types of social challenges. Children with and without disabilities participate in the PBS process in schools, at home, and in community settings. In school settings, PBS strategies are used to build a positive climate and include all students, not just children who may engage in more serious problem behavior. Adults with disabilities are actively involved in PBS team processes regardless of their age and where they live and work. The Association for Positive Behavior Support (APBS) has been created to build a community of individuals who are interested in the PBS process and who represent many different voices and perspectives. Family members, school professionals, psychologists, adult service providers, higher education professors, researchers, and community members are all involved in APBS. Regardless of the different settings and individuals involved in PBS processes, the key elements remain the same for individual planning. The PBS process involves a team of individuals working together collaboratively to gather information and create strategies for preventing problem behavior.

Functional Assessment. The cornerstone of PBS is the design anportrait_showcase_children_50.jpgd use of functional (behavioral) assessment to understand what maintains an individual’s problem behavior. Individuals engage in a behavior because it is functional; it helps them acquire some form of reinforcement (e.g., they get something desirable or pleasant, or they avoid something undesirable or unpleasant). A person may engage in problem behavior because circumstances in both the internal and/or external environment (i.e., antecedents, setting events) trigger or ‘set the stage’ for behavior to occur. Functional assessment is a process for identifying the events that trigger and maintain problem behavior. This process involves information gathering through record reviews, interviews, and observations and the development of summary statements that describe the patterns identified. Primary outcomes of the functional assessment process include:

  • A clear description of the problem behaviors
  • Events, times, and situations that predict when behaviors will and will not occur (i.e., setting events)
  • Consequences that maintain the problem behaviors (the function)
  • Summary statements or hypotheses
  • Direct observation data to support the hypotheses

Comprehensive Intervention. The team that forms around a child or adult in order to create a PBS plan should represent all of the situations and settings that are part of the person’s life. Information that is gathered from a functional behavioral assessment helps this team develop and implement behavioral intervention plans that are positive, proactive, educative, and functional. PBS plans include a number of interventions that can be implemented across situations and settings. These interventions include: 1) proactive strategies for changing the environment so triggering events are removed, 2) teaching new skills that replace problem behaviors, 3) eliminating or minimizing natural rewards for problem behavior, and 4) maximizing clear rewards for appropriate behavior. A hallmark of PBS planning is emphasis on improving overall lifestyle quality (relationships, activities, health) as an integrated part of behavior support.

Mindy2sm.jpgLifestyle Enhancement. PBS focuses not only on reducing behavior problems, but on enhancing a person’s overall quality of life. Outcomes include lifestyle improvements such as participation in community life, gaining and maintaining satisfying relationships, expressing personal preferences and making choices, and developing personal competencies. Such improvements in quality of life are facilitated by establishing a positive long-range vision with the individual and his/her family (e.g., through person-centered planning) and establishing natural supports through effective teamwork.

jpbi.jpgA great resource for staying on top of the research and clinical work in PBS is to subscribe to one of my favorite journals, the Journal of Positive Behavior Interventions (JPBI).  If you are going to subscribe to one journal and you work with or have a child with autism, this is one of the most practical journals I have seen as  the research is very applied and accessible to anyone.

Another useful journal, which is a free online journal, on PBS is the Journal of Early and Intensive Behavior Intervention

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