Dr. Chris’ Autism Journal

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.
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.

Many 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.

I recently had the pleasure of interviewing Krista Schultz, who works in Alberta, Canada with children with autism.  She is an ABA and developmental specialist and a frequent user of TeachTown with her clients.  I love her philosophy for teaching children and her passion for making a difference in the autism community.  I also really enjoyed her responses regarding technology and her feedback on TeachTown.  I hope you enjoy this as much as I did! 

Interview with Krista
May 2, 2007

1) Please provide us with a brief background about your education and credentials:

I am originally from Northern Alberta, Canada and received my first degree (Bachelor of Education) from the University of Alberta.  During teaching and then school counseling, I worked through a Master of Science degree in Educational Psychology with a Specialization in Developmental Psychology.  Since that time I have become a Registered Psychologist in the Province of Alberta and have continued to work in educational systems as well as home environments supporting children with special needs.

2) When and why did you start working with children with autism?

To be honest, it was quite unintentional.  Behavior has always been my key interest and I had been working with severe behavior disorders in children and adolescents. I am an avid proponent of the position that although we live in very rural areas, we should be providing children with services and professionals to the best of our abilities.  I received a call from a colleague who had a referral for an adolescent with autism and she asked if I would consult.  It was then that I realized that the area of autism and the families in our communities were sadly being under represented.  At that time, autism was not widely recognized.  Due to many factors, media included, I find there to be far more interest from the general public on the area of autism and thankfully, more recognition from service providers and educators to broaden their own knowledge of the diagnosis.

3) What positions have you had in the past and where do you work now?

I have been a teacher of many subjects, gifted students, educable mentally handicapped and those with severe behavioral disabilities.  As a Psychologist, I have a private practice and contract to school divisions, multidisciplinary teams and family agencies to provide assessment, support and programming for children with a variety of needs including those with medical conditions, FASD, severe behavioral disabilities, Autism Spectrum Disorders and learning disabilities.  I am also a workshop facilitator on several subjects surrounding special needs children and learning. 

4) What is the best part of your job?

Watching my clients successfully meet objectives and seeing the joy on the faces of parents.  AND, having clients whom other professionals cannot pick out of the classroom as the child who has the autism diagnosis!

5) What part of your job is most difficult?

Supporting families while waiting for services to be put in place.

6) What is your approach to using ABA? 

I believe that ABA incorporates many different teaching methods.  It is flexible and transitions between developmental stages as well as changes that a child presents during the course of their programming.  It is that flexibility - and the knowledge and openness to accept and embrace those times - that allows ABA programs to meet the needs of the individual child and address behavioral teaching.  Generalizing to natural settings and a comprehensive interventionist program that eventually fosters the fading of reinforcers is my key approach with my primary work being in school settings.

7) Other than ABA, what other treatment approaches do you incorporate into your practice?

My treatment practices in my work with autism have largely been guided by the science of ABA and the writings of Lovaas, Fenske, etc. 

8) Do you find that many children you work with benefit from using visual strategies?

Absolutely.  Given the difficulties with self regulation and auditory “overload”, many of the children I work with can build increased independent and functional skills from incorporating the visual modality.

9) How do you think that computers can help children with autism?

Computers are tools in our society.  Working with children with autism and using computers allows behavioral teaching and independence with skill building.  While the face to face, social component of interactions is certainly important, there are many aspects of teaching that can be completed by the use of computers.

10) Do you think computers can help parents, in what way?

Often the parents with whom I consult are eager, interested and motivated but they are not therapists or teachers.  They are not autism specialists or experts.  Having the technology and support of a good program that is effectively addressing the unique needs of their child(ren) with autism is empowering and motivating.  It also allows parents to be parents and not have the worry of appropriate programming or seeking out multidisciplinary teams to do, essentially, similar work.  Given our shortage of professionals in many areas and the factor of rural living, computers also “shrink” and sometimes eliminate barriers to effective programming.

11) How can computers help schools?

In our province, technology in schools is priority and for children with autism we find that while teachers want to offer similar experiences, they are often at a loss to make these times meaningful and functional.  In several situations this year, I have been exploring the use of TeachTown in a variety of settings in schools.  Again, non-expert facilitation and the preparation time that computers offer teaching professionals has been invaluable.

12) How do you use computers in your position and how can other clinicians benefit from technology?

I have been far more open to using technology and computers as tools for increasing functionality, independence and skillstreaming.  We are fortunate in this day and age that assistive technology devices and technology such as TeachTown has vastly reduced barriers that would have otherwise made appropriate and beneficial teaching very difficult or unrealistic.

13) What aspects of TeachTown: Basics are most helpful for you?

The non-expert model has been very motivating for those unfamiliar with autism.  The ease of setting the program up and moving parents and para-professionals through the trials has been excellent.  As an educational psychologist working with Individual Program Plans, the data, ease of collection and simplicity of results (graphs, etc.) have provided solid evidence of progress for clients.  Teachers have been thrilled with the explanations of objectives for sessions as it has allowed more meaningful short and long term goals to be added into the child’s program plan.

14) If you were on the design team at TeachTown, what would you do next to improve or enhance TeachTown: Basics?

Expand the developmental levels to promote additional training for older children!

15) What future directions should TeachTown take for developing other products?

I would like to see TeachTown work with assistive technology professionals to address the needs of children with autism who may present with additional impairments such as hearing impairments, visual problems or severe fine motor skill deficits. 

In a recent About: Autism Spectrum Disorders posting, the top 10 treatment approaches for autism were listed along with helpful links for each of these approaches.  The top 10 were determined by popularity, research, and most effective overall.

The top 10 listed were:

1) Applied Behavior Analysis (ABA)

2) Speech Therapy

3) Occupational Therapy

4) Social Skills Therapy

5) Physical Therapy

6) Play Therapy

7) Behavior Therapy/Positive Behavior Support

8) Developmental Therapies

9) Visually-based Therapies

10) Biomedical Therapies

I would like to see a similar list, in order, of those that are the most research-based and have evidence of effectiveness with the largest number of children with autism.  Organizations such as the National Autism Center are dedicated to coming up with good ways to make these kinds of lists and to develop rankings for treatment approaches which will be based on research and effectiveness for ASD.  This project is called the National Standards Project and the expert panel and conceptual reviewers include a prestigious group of autism researchers including several of our TeachTown science advisory board members including Dr. Ilene Schwartz, Dr. William Frea, and Dr. Aubyn Stahmer.

I would also like to see more studies on technology and which programs are effective and which ones are not.  It won’t be long before Computer-Assisted Instruction is added to the list above, I just hope that developers, and perhaps more importantly, university researchers continue to conduct the necessary research to keep improving these programs.

**Please see comments from the author of the ABOUT blog, she makes some excellent comments and I completely agree with her!**

It seems like every week I am reading an article about another school district struggling to keep up with the expenses of educating children with autism and how instead of adding resources, they keep getting taken away!

In South Carolina, $1.4 million were taken away from the already struggling programs.  This means that children might not get the needed treatment that they need, such as ABA.  More than $700,000 is being dedicated to serving the children with autism, which will cover ABA for only 30 students.  It seems to me that solutions must be found which can spread the limited amounts of money further, how can schools serve more children with the same amount of money while still providing the quality treatment that is needed?

It is time for researchers to start thinking about solutions for schools, there is a large amount of data supporting ABA and some other approaches as well.  However, I would like to see studies looking at how to develop ABA treatments further so as to be able to serve more children, perhaps in small group instruction, or utilizing technology, or simplifying procedures for less expensive staff to implement, or other creative solutions to deal with this critical issue in our education system.

In addition, I would like to see more funding and grants for school programs and more education for school staff to more effectively educate children with autism spectrum disorders.  This could be done easily through online learning programs or local conferences for educators.  In addition, more funding and research is needed for how to effectively and efficiently educate school staff so that they are empowered and motivated.

The other important thing that is needed for school systems is training and accountability for student outcome.  Researchers should consider designing assessments that are feasible and easy for schools to implement, and standards should be set for what exactly schools are expected to measure and report.  While some school districts require teachers to use standardized measures of assessment, these measures are often not appropriate or informative for measuring the progress of children with autism spectrum disorders.  If measurements are required, they should be scientifically validated for the autism population.  In addition, managable and efficient tools need to be developed and available to teachers to make data collection accurate and consistent.

Some states are taking measures to address these important issues, such as California and the Blue Ribbon Commission.  I recently served on the task force for education for this group, and was pleased to see that I am not alone in these concerns and that there are initiatives out there that are working toward solutions.  I will post updates on this Commission as they are available.  Please post other initiatives or solutions that you think are helpful! 

Researchers from Norway and New York (Eldevik, Eikeseth, Jahr, & Smith, 2006) recently compared 2 groups of children who were either receiving behavioral treatment for 15 hours/week or eclectic (i.e. using multiple treatment approaches) for 12 hours/week.  After 2 years of treatment, the behavioral group made larger gains than the eclectic group.

Many studies support the fact that behavioral treatment is effective and several researchers have stated that this treatment must be intensive, meaning 40 hours of 1:1 intervention.  In the 1st study of intensive behavioral intervention, Lovaas (1987) showed clinically significant gains for 17 out of 19 children with autism while the control group of the other 19 children with only 10 hours or less of intervention showed decreases in IQ.  Although this study has received some criticism due to focusing mostly on IQ changes for treatment outcome and because researchers have not been able to replicate the dramatic results, it is the most commonly cited study in ABA treatment for autism and helped lay the groundwork for many years of research.  Other research studies have also shown positive gains with intensive behavioral intervention, but none as dramatic as the Lovaas study in 1987.  In this paper, ABA is synonymouse with Discrete Trial Training (DTT).  However, as we have discussed in previous postings, it is important to note that DTT does not equal ABA, rather, DTT is one ABA approach.

The authors in this paper stated that less intensive ABA (10-20 hours/week) is acceptable when cost, availability of professionals, or concerns from parents about the stress of 40 hours/week on a child & the family are concerns.  The National Research Council recommends 25 hours/week, but they do not state that this intervention must be DTT, or even ABA, but the NRC does state that practices should be evidence-based.  In other words, it is not clear whether or not more natural, peer group settings are as effective (or more effective).  In most situations of quality education, eclectic approaches are provided which have some 1:1 intensive ABA and more natural, peer group instruction.

In this study, 13 boys participated in the behavioral group and 14 boys and 1 girl participated in the eclectic group.  All children attended regular education classrooms for about 20 hours/week.

Treatment staff were required to complete intensive training in both the behavioral and eclectic treatment group.

The behavioral intervention used was based on the Lovaas manual (1981) and the Behavioral Interventions for Young Children with Autism book (Maurice, Luce, Green) (1996).  An updated Lovaas manual is now available too, if you are interested in this teaching approach!

The eclectic treatment approach consisted of alternative communication (symbol communication or sign language), ABA, total communication, sensory integration therapy, TEACCH program, and other methods based on the experiences of the teachers.

Treatment outcome was determined by IQ testing (Bayley and Stanford-Binet), standardized language assessments (Reynell and PEP-R), the Vineland Adaptive Behavior Scale, nonverbal IQ (Merrill-Palmer), and a pathology scale (No Words, Not Affectionate, No Toy Play, No Peer Play, Stereotypical Behaviors, Severe Tantrums, and Not Toilet Trained).

No significant differences in number of hours of treatment were observed between the 2 groups, both groups received about 12 hours/week of 1:1 for 20 months.  The major difference between the 2 groups were the approaches used, not the intensity.  In the eclectic group, ABA was not used nearly as often as in the behavioral group.

The behavioral group overall did slightly better than the eclectic group, but the difference was not clinicially significant.  In this study, the children partipating had lower intellectual functioning overall to start than children in similar studies.  Also, in this study, lower intensity treatment was used (less hours) than in other high intensity treatments in other studies (more hours).  The quality of treatment was also not monitored as closely in the eclectic group as in the behavioral group.  So, it is possible that quality of intervention may account for the difference rather than the actual approach used.  The types of intervention used in the eclectic group were also not closely monitored so it is not clear how much time was spent on each treatment approach.  It is also possible that the difference between the 2 groups may be due to the more systematic, data-driven approach in ABA and that the ABA approach was manualized whereas the other approaches were not necessarily.

The fact that this study was a retrospective one (meaning they went back and looked at these children after 2 years) rather than a planned and controlled investigation is also a limitation that the authors noted.

My opinion:

1) I think this study will get a lot of attention and I appreciate that there are researchers out there trying to answer some of the important questions about number of hours and types of interventions.  I also think that the researchers did an excellent job identifying the limitations of their study and ideas for future research.  My only concern about this paper is that some people may leap to conclusions which the authors probably did not intend to make the readers believe.  I hope to see more studies like this one from this group of researchers addressing some of the limitations they mentioned in their paper and maybe some of the ones I list in this posting. 

2) I don’t think that this study proves that lower intensity treatment is not as effective as higher intensity treatment (nor do I think that was the intention of the authors in this paper) as this study did not directly compare number of hours and the children in this study had lower intellectual functioning to start than children in the other research studies.  I think it is an important study to directly compare # of hours with the same treatment approach within the same study - there is so much controversy over this and the truth is, we still do not know much about the # of hours of intervention.  Many studies have demonstrated effectiveness of ABA treatments with low-intensity (e.g. PRT studies) and many studies have demonstrated effectiveness of ABA with high-intensity (e.g. Lovaas).  I think this study highlights the importance of doing this research, but it does not answer the question about low-intensity vs. high-intensity. 

3) I don’t think this study demonstrates that Discrete Trial Training is superior to other types of intervention because the differences between the groups were not very big and it is not clear what exactly the children were receiving in the eclectic group.  I would like to see a research study comparing evidence-based treatment approaches, it is not clear to me that the eclectic group used evidence-based treatment programs and if they did, which ones did they use and which ones were effective or not?  Also, I would like to see research looking at more structured ABA approaches such as Discrete Trial Training compared to more play-based types of ABA such as Pivotal Response Training (PRT).  I also think it is important to look at treatments that are backed by research, comparing an evidence-based approach (Discrete Trial Training) to a potentially non evidence-based approach may be the main reason a difference between the groups was observed.

4) Although I think the measures used were interesting, I would like to have seen actual behavioral data on the children - did the children look any different after 2 years of treatment?  Did they use more spontaneous language, were changes in joint attention observed, did the play skills become more age-appropriate, and did the children look more “normal” in behavioral observations?  The problem with only using standardized measurements is that this information gets lost, a simple behavioral observation of the child in a play situation with the experimenter and with the parent, would have been sufficient.  This type of measurement is frequently used in more naturalistic training studies which focus on generalization of skills to the natural environment and I think that kind of measurement, especially in these important studies, would shed more light onto real treatment outcome (rather than just changes in standardized measures).

5) Another thing I would like to have seen in this study is information about generalization of skills - was there a difference in this between the two groups?  How was generalization measured or wasn’t it?  I think that any study looking at treatment outcome for ABA should report generalization - if the skills did not generalize to real-life situations, it is not clear how valuable those skills are.