Interventions and Therapies

No one intervention works for all individuals with autism. There is no such thing as a "one fits all" approach. No two children with autism are the same and no two families are the same; therefore what works for one child and his or her family may not work for another. With autism on the rise, more interventions and therapies have developed focusing on helping individuals with autism. Families frequently feel overwhelmed with deciding what interventions and therapies to use. Because of this challenge, the Oklahoma Autism Network (OAN) developed a 10-step guide for putting together an effective intervention program. This is a process that cannot occur over night or by just one team member. You need to recruit as many supportive people as you can and be patient as you strive to put together the most effective program for your child.

THE OKLAHOMA AUTISM NETWORK 10-STEP GUIDE

Understand what the literature says about effective programming for individuals with autism spectrum disorders.
Develop a Master Plan for your child with autism.
Decide who your child's team is and who on the child's team will work on what goals.
Look at public resources to see if any free, natural resources are available to help your child meet goals on the Master Plan.
Decide any specific type treatment approaches you want to incorporate in your child's program in order to help your child meet certain goals on the Master Plan.
Decide if you are going to use any alternative type treatment approaches.
Carefully evaluate the research that supports or does not support any of the treatment approaches you are considering for your child.
Evaluate your financial position in order to determine how much out of pocket expenses you are going to have to pay for versus what other institutions might pay for (e.g. insurance, public school, early intervention).
Decide how and when you are going to evaluate if any of the treatment approaches are working for your child.
Re-evaluate your child's Master Plan and make changes as needed.

STEP 1: Understand what the literature says about effective programming for individuals with autism spectrum disorders.

The National Research Council (2001) at the request of the U.S. Department of Education convened a committee to examine scientific, theoretical and policy documents related to autism and to develop a method to evaluate the educational interventions for children with autism. This book is a great tool to use when creating or evaluating a program for an individual with autism.

The National Research council (2001) described the theoretical beginnings of most educational programs for children with autism as either developmental or behavioral.

Behavioral
The bulk of intervention research for autism spectrum disorders has been conducted from the perspective of applied behavior analysis. Applied behavior analysis includes any method that changes behavior in systematic and measurable ways. In the past, these behavioral programs emphasized acquisition of discrete skills, and intervention were evaluated in terms of whether they produced observable and socially significant changes in children's behavior.

More traditional behavioral programs focused on providing environments that were distraction-free and presented information to the children in discrete trials, and appropriate behavior was rewarded. More modern programs are now promoting programs that focus more on the generalization of these skills than the more traditional type

Some common behavioral intervention programs: Applied Behavioral Analysis (ABA), LEAP Model, Pivotal Response Training, Positive Behavior Support (PBS), UCLA Young Autism Project, TEACCH.

Developmental
Developmental programs use the child's interests and developmental level to increase social-emotional and intellectual capabilities. Developmental programs believe that by engaging the child in activities of interest, the child will build skills to communicate, regulate behavior, and interact with others (requesting, initiating, and responding).

Some common developmental programs include: Treatment and Education of Autistic and related Communication-handicapped Children (TEACCH), The Denver Model, and the Social-Communication Emotional Regulation and Transactional Supports Model (SCERTS).

Common Elements
The National Research Council also summarized the following six components as critical components to effective programs for young children with autism:

Early intervention - they found that the earlier we provided intervention to your children with autism, the more effective the programs were for children.
Programs need to provide intensive services for young children. They recommended that children need to be actively engaged in intensive instructional programming for a minimal of 25 hours a week. The instruction can occur in a variety of settings (e.g., home, childcare, play groups, community, school) and can include everyday activities.
Repeated, planned teaching opportunities for young children. Children should have access to one-to-one opportunities with trained staff, along with small group instruction in order to meet individualized goals. The ratios will be dependent upon the child's chronological and developmental age.
Family involvement - families need to be involved in every step of the entire process!
Low student/teacher ratios - They recommend that no more than two young children with autism per adult in the classroom.
Process for re-evaluating the program and a mechanism for measuring children's progress. Then making changes as needed to the program.

STEP 2: Develop a Master Plan for your child with autism.

Developing a Master Plan is a critical piece of developing an effective program for your child. In order for you to partake in this journey, you need to develop a goal and a road map for your program. You might need to access other people to help you develop a Master Plan. For more information on developing a Master Plan visit (link to Master Plan).

STEP 3: Decide who your child's team is and who on the child's team will work on what goals.

You need to carefully evaluate the people you feel are critical to your child's team. This can range from free supports to paid supports. After developing goals for your child's Master Plan, look at the list of people on your team and decide who can address certain goals. Your plan needs to consist of a balance of free versus paid supports (preferably more free supports). Below is an example of some free versus paid supports.

Free supports: Sunday school teacher, neighbor, favorite relative, next door neighbor, friend from school, work colleague.
Paid supports: occupational therapist, behavioral therapist, speech therapist, psychologist, teacher, gymnastics teacher, swim coach.

STEP 4: Look for natural resources to help your child meet goals on the Master Plan.

Natural resources are activities available to the child/family in the community that other families are accessing who do not have a child with autism. Families who have children with autism frequently isolate themselves and steer away from accessing these natural resources because they have possibly tried and failed. Keep trying to access these natural resources because they do not typically go away with funding. For families who solely rely on paid supports they are at risk for possibly losing those supports when the money goes away. Families who rely more heavily on natural supports are preparing their child to be supported by their community for the rest of their life. Some examples of natural resources:

Natural resources: swim lessons at local YMCA, boy/girl scout classes, gymnastics class, organized sports teams, local Mother's Day Out programs.

STEP 5: Decide the treatment approaches you want to incorporate in your child's program to help your child meet goals on the Master Plan.

Because of the increase in the amount of children being diagnosed with autism spectrum disorders, there is also a large increase in the variety of approaches and interventions available for children with autism. Treatment approaches are being developed quicker than the research behind the intervention! Because of this, proceed with new treatment approaches with caution.

B.J. freeman provides guidelines and questions to consider in her article, "Evaluation of Intervention Programs for Autism." Consider each of them when making decisions about a treatment intervention for your child.

Approach any new treatment with hopeful skepticism. Remember the goal of any treatment should be to help the person with autism become a fully functioning member of society.
Beware of any program or technique that is said to be appropriate for every person with autism.
Beware of any program that thwarts individualization and potentially results in harmful program decisions.
Be aware that any treatment represents one of several options for a person with autism.
Be aware that treatment should always depend on individual assessment information that points to it as an appropriate choice for a particular child.
Be aware that no new treatment should be implemented until its proponents can specify assessment procedures necessary to determine whether it will be appropriate for an individual with autism.
Be aware that debate over use of various techniques are often reduced to superficial arguments over who is right, moral, ethical and who is a true advocate for the children.
Be aware that often new treatments have not been validated scientifically.

A few questions to consider regarding specific treatment approaches:

Will the treatment result in harm to the child?
Is the treatment developmentally appropriate for the child?
How will failure of the treatment affect my child and family?
Has the treatment been validated scientifically?
How will the treatment be integrated in the child's current program?

STEP 6: Decide is you are going to use any alternative type treatment approaches.

Some families decide to use alternative type approaches. These are approaches that have not been validated scientifically; however, they might have some case studies that demonstrate their effectiveness. We strongly encourage families who decide to use alternative approaches to do so with caution and to evaluate the approaches prior to starting the program by asking questions as described in Step 5.

For a full list of different treatment approaches along with a summary of research on the programs, visit: http://www.asatonline.org/resources/autismtreatments.htm.

STEP 7: Carefully evaluate the research that supports or does not support any of the treatment approaches you are considering for your child.

If you decide to proceed with an intervention, and the intervention has some research to support it, you need to carefully evaluate the research. To evaluate such information, it is important to understand what well-founded research is and what it is not. Valid research follows a standard scientific process and contains specific "ingredients." Here are some key questions for evaluating the ingredients of research:

Who conducted the research? Did the researchers stand to gain or lose money or reputation depending on the outcome? Did qualified professionals publish the research?
What was measured - fact or opinion?
Where was the information gathered? Was quantitative research done in a well-controlled environment such as a laboratory? Was qualitative data collected from people in several geographic areas?
When was the research conducted? Has the same research been replicated more recently, perhaps in the last year or two? Is this the most current data on the subject?
Why was the research conducted? Why is this data important? Remember the original intent of the research as you consider the results reported. Why do you need to know this information and how will you use this knowledge?

For more information on evaluating research, please visit the following website: http://www.schwablearning.org/

If the intervention(s) you are considering to use with your child has no research available, proceed with caution and look to see if there are any risks associated with implementing this certain intervention technique. Risks can include: harm to your child, child missing out on other opportunities, financial cost, emotional cost, time cost, etc. If you still feel as though the benefits could exceed the cost associated with the intervention technique, develop a plan and measure the expected changes specific to your child.

Below are a few strategies for measuring change in your child:

Decide first what changes you want to see in your child and write goals about those changes. Be specific about the changes you want to see happen.
Take baseline data of your child's skills and abilities prior to starting the new intervention.
Start the new intervention by itself. If you start more than one intervention at a time, you will not know which one is making changes happen or not.
Re-assess the goals by taking more data. Decide how long you are going to wait before measuring your initial goals again. When that time frame elapses, then take data of the same skills and abilities that you did initially.
At this point you can decide if the intervention is worth continuing, or is it time to try something else.

* Remember to try to be as "objective" as possible. Try not to put your bias into the intervention approach; just look at the data.

STEP 8: Evaluate your financial position in order to determine how much out of pocket expenses you are going to have to pay for versus what other institutions might pay for (e.g. insurance, public school, early intervention).

Investigate all the options you have for financing and/or providing for your child's program. Some options might include: early intervention services, public school services, Medicaid, and private medical insurance. After looking at the programs and identifying out of pocket costs, if any, look at your family budget to see if the programs will fit in your budget. Many times, cost of services can be negotiated, many providers offer a sliding scale if you demonstrate financial hardship.

The following is an on-line training conducted by the Oklahoma Autism Network for families in Oklahoma regarding accessing financial resources.

STEP 9: Decide how and when you are going to evaluate whether the treatment approaches are working for your child.

As a team, you need to decide at what point (e.g. 1 month, six months, one year) you are going to meet and evaluate the Master Plan. At this point you will look to see if your child did or did not accomplish the goals on the Master Plan. Also, this is a time to evaluate the various treatment approaches or natural resources that have been used to determine if they were effective in supporting your child towards reaching the goals on the Master Plan.

STEP 10: Change and update the Master Plan as needed.

Now is the time that to make any changes to the Master Plan. You might add, change or remove team members. You also might decide to try different treatment approaches or stop using approaches that the team did not feel were effective for your child.

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