Navigating the Autism Therapy Maze: 9 Ways to Help Families Find What Works

September 9, 2010

Families of children with an autism spectrum disorder face many hurdles when seeking care for their child. Creating resource handouts for parents and partnering with educational institutions and research facilities are just a few ways pediatricians can help guide these families through the maze of therapeutic options.

ABSTRACT: Pediatricians can help guide the families of children with an autism spectrum disorder through the maze of interventions, toward the goal of optimizing these children's potential for a productive, independent, brighter future. This requires an awareness of local resources, smart use of published information, partnership with educational and therapeutic agencies as well as families, and the willingness to be an advocate and provide a medical home. Keeping track of their child's progress in school and knowing when to engage health insurance and Medicaid can also benefit these families. Connecting families to regional institutions' training programs may help reduce the cost of researchbased interventions.

With the prevalence of autism spectrum disorders (ASDs) in the United States now estimated to be about 1 in 110 children,1 pediatricians may have an influx of children with an ASD in their practice. The guidelines from the American Academy of Pediatrics (AAP) emphasize the need for early identification and prompt referral of children in whom an ASD is suspected.2,3 Even after diagnosis, the families of children with an ASD often return to the medical home for routine care-and for advice.

These families face many hurdles when seeking care for their child. A common obstacle is the paucity of subspecialists (developmental-behavioral pediatricians, child psychiatrists, and child neurologists) in many communities. This makes obtaining necessary services, such as screening for comorbid medical and psychiatric conditions, difficult. Although the AAP and other autism advocacy organizations provide many resources on ASDs for families, access to evidence-based therapies may be limited because of a lack of trained providers on a local level or because of larger legislative and reimbursement issues. In addition, given the difficulties in accessing evidencebased therapies, some families may choose to seek complementary and alternative medicine (CAM) that may be unsupported by scientific research. Consequently, pediatricians are likely to feel helpless in advocating for the families of their patients with ASDs.

In this article, we present 9 strategies pediatricians can use to help the families of children with an ASD navigate the maze of therapeutic options.

Debrief the family after diagnosis to reinforce the management plan

1

Before meeting with the parents of a child with a newly diagnosed ASD, you must first understand your role in the management plan. Ideally, this should be clear after reviewing the medical and therapeutic recommendations for the child in the report from the subspecialist who made the diagnosis. However, do not assume that the subspecialist has initiated the various processes specified in the report's recommendations. If you cannot glean from the report what your role is, a call to the subspecialist's office can help clarify which processes were initiated and what is expected of you. This prevents duplication of referrals and resources and ensures that the child begins appropriate therapy.

The parents of a child with a newly diagnosed ASD often experience grief and sometimes relief that their long-held suspicions were valid. When you meet with them, it is important to discuss their interpretation of the subspecialist's diagnosis and to determine what they believe the next steps are and what steps they may have already taken. It is not surprising that some families are so overwhelmed by the diagnosis of autism that they do not completely recall what is expected of them in the management plan. The meeting helps reinforce the plan, provides an empathic sounding board, and helps determine the family's priorities going forward.

Sort through the resources on ASDs and create handouts for parents

2

The AAP's Children's Health Topics Web site provides a wide array of resources-both academycreated and external-to help answer questions from the families of children with an ASD.4 In addition to the must-have policy statements, the Web site has links to family and community resources and professional resources, such as webinars from experts in the field. The AAP's Caring for Children With Autism Spectrum Disorders: A Resource Toolkit for Clinicians (available for sale through its bookstore) provides a wealth of family handouts and professional fact sheets on many topics, including therapeutic interventions across the life span.

It is helpful to sort all your ASD-related resources into 2 types: print copies you can give to families and electronic files you can use for future reference or for ongoing professional development. Table 1 is a good example of a starter resource handout for parents. This handout lists resources from several organizations; most notably the Family Services 100 Day Kit from Autism Speaks (which can be downloaded for free). Table 2 provides online resources for well-known research-based interventions. In addition to comprehensive intervention programs, many children with an ASD require assistance from related services to help improve speech, language, and social skills as well as sensorimotor functioning. Table 3 is a sample "related services" handout.

ResourceDescriptionHelpful materials

Autism SpeaksThe nation's largest autism science and advocacy organization; dedicated to funding research, increasing awareness of ASDs, and advocating for the needs of persons with autism and their families
?Links to parent support groups, educational materials, videos
?Free downloadable

CDC – National Center on Birth Defects & Developmental DisabilitiesAims to promote the health of children and adults and to enhance potential for full, productive living, through research, partnerships, prevention, and education
?Learn the Signs, Act Early
?Free resource kits for health care and child-care professionals

Organization for Autism Research (OAR)Mission is to use applied science to answer questions that parents, families, persons with autism, teachers, and caregivers confront daily
?An Educator's Guide to Autism
?Parent's Guide to Assessment

Autism Society of AmericaThe nation's leading grassroots autism organization, with a strong chapter network that has spearheaded numerous pieces of state and local legislation, including the 2006 Combating Autism Act
?Online quarterly journal
?Annual national conference on autism
?Links to local chapters for families are particularly helpful

Future HorizonsAims to disseminate information about autism and Asperger syndrome through books and other media; has grown to be a world leader in publications and conferences on ASDs
?Catalog of books, DVDs, and other materials for families, professionals, and children
?Online magazine

WrightslawLeading Web site for special education law and advocacy; publishes thousands of articles, cases, and free resources for parents, educators, advocates, and attorneys
?Online articles to help families understand the special education process
?Books, CDs/DVDs, digital media through Harbor House Law Press
?Yellow Pages for Kids provides contact information for local resources

The National Academies PressPublishes reports from national institutions, offers free online access as a PDF read-and-print publication
?Educating Children with Autism

Maintain a local resource database

3

As thorough as the resources in the tables are, they are even better when modified to highlight what is available in your particular community. The AAP Toolkit has templates that can be edited to list local professional, therapeutic, and family support resources. Information on these services can be obtained from your local AAP chapter or subspecialist or from the Web sites of Autism Speaks (under Community, Family Services) and the Autism Society of America (under Autism Community, Autism Society Local Chapters).

With input from families and other providers, periodically review your customized resource list to make sure it is up to date. This list typically includes subspecialist physicians, community mental health agencies and psychologists, early intervention and school special education programs, therapeutic providers (occupational therapy, physical therapy, speech, behavior analysts), family resource and advocacy centers, and family support groups, to name a few.

Know your "alphabet soup" of research-based interventions and CAM therapies

4

Many interventions for children with ASDs have been developed over the years; these have evolved from different philosophies. It is important to understand the conceptual differences behind the various approaches.

Table 2 – Research-based interventions for children with ASDs

Applied Behavioral Analysis (ABA)


A video describing ABA is available at

http://www.youtube.com/watch?v=iyCx-OLzgJw



To find board-certified behavior analysts in your area, visit the Behavior Analyst Certification Board Web site:

http://www.bacb.com/consum_frame.html

Home/school programs

Discrete Trial Training (DTT)


For information and resources on DTT, visit

http://autismpdc.fpg.unc.edu/content/discrete-trial-training-0

Pivotal Response Training (PRT)


For a training video on PRT, visit

http://www.autisminternetmodules.org/mod_intro.php?mod_id=41



Please note: you will need to create a username and password to access the training materials

Verbal Behavior (VB) Approach


For an introduction to and more resources for VB, visit

http://www.autismspeaks.org/treatment/verbal_therapy.php

Developmental Individual Difference Relationship (DIR)/Floortime Model


For information and a video demonstration of this model, visit

http://www.icdl.com/dirFloortime/overview/index.shtml

In-school programs

Early Start Denver Model (ESDM)


Information on this model is available at

http://www.autismspeaks.org/docs/d_200911_ESDM.pdf

Social Communication, Emotional Regulation, and Transactional Supports (SCERTS)


For a video describing this model, visit

http://www.autismpodcast.org/?p=98

Training and Education of Autistic and Related Communication Handicapped Children (TEACCH)


For a video describing this model, visit

http://www.youtube.com/watch?v=ddGLJ2r4rcw

ASDs, autism spectrum disorders.

Research-based interventions. Most parents select one type of intensive intervention on the basis of their child's needs and their parenting style. The intensive interventions listed below require multiple hours of therapy per week and address behavioral, developmental, and educational goals (see Table 2 for a list of online resources). Before the parents choose an intervention, they need to investigate the claims of each therapy so that they understand the possible risks and benefits for their child. Currently, empirical evidence shows that no program is superior to another.

Applied Behavioral Analysis (ABA). ABA uses behavioral principles to teach new skills and increase desirable behaviors.5 (Several other interventions, such as Discrete Trial Training and Pivotal Response Training, are also based on ABA principles.) Families considering an ABA program for their child should seek a board-certified behavior analyst to ensure that the therapist has had adequate training and supervision.

Discrete Trial Training (DTT). This involves breaking down tasks into short, simple trials, with concrete instructions, and rewarding desired behavior and completion of tasks with tangible or external reinforcement. This occurs in an environment with few distractions and a very small teacher to student ratio that does not promote the transfer of skills to more natural situations. Thus, those who use this method must teach the child to perform skills in different settings, with different people, and different stimuli.6-8

Pivotal Response Training (PRT). This approach focuses on critical, pivotal behaviors that affect a wide range of human interactions and social situations. PRT is used to teach language; decrease disruptive/self-stimulatory behaviors; and increase social, communication, and academic skills.9,10 The child plays a crucial role in determining the activities and objects used in the PRT exchange, and skills are taught in a natural, contextual setting.

Verbal Behavior (VB). The goal of VB is to increase functional language and appropriate social skills while decreasing stereotyped and problem behaviors.11 A VB program focuses on helping a child realize that language will get him what he wants, when he wants it.

Early Start Denver Model (ESDM). This developmental model of intervention is delivered in a classroom setting where all activities and therapies are conducted within a play situation.12 It was recently combined with PRT to target children with ASDs aged 1 to 3 years.13

Developmental Individual Difference Relationship (DIR)/Floortime Model. The parent or professional who applies this relationship-based approach follows the child's lead and looks for opportunities to respond in a way that encourages expansion of a skill or interaction.14 It is highly dependent on the skills of the parent or professional implementing the program.

Social Communication, Emotional Regulation, and Transactional Supports (SCERTS) Model. This educational approach provides specific guidelines for helping a child become a competent and confident social communicator while preventing problem behaviors that interfere with learning and the development of relationships.15 The SCERTS model also provides educational and emotional support to families and aims to foster teamwork among professionals.

Training and Education of Autistic and Related Communication Handicapped Children (TEACCH). This is a special education program that teaches independence and developmental skills through a structured approach.16 An individualized plan is developed for each student on the basis of emerging skills in a highly structured environment, using visual supports to help the child easily predict and understand daily activities and respond in appropriate ways.

CAM therapies. Parents may feel the urge to use CAM therapies for a variety of reasons. Pediatricians must be willing to have an open and nonjudgmental discussion with the family and be familiar with the CAM providers in their local area. Several articles review the scientific standing of CAM therapies.17-19 They are also well outlined in the AAP ToolKit.

Be aware of early intervention programs and school procedures

5

The Individuals with Disabilities Education Act (IDEA) guarantees a free and appropriate public education and provides protections for all children with disabilities from birth to age 21 years. Infants and toddlers from birth to 3 years with, or at risk for, disabilities are covered under the Early Intervention (EI) Program (Part C of IDEA). Because the EI Program's rules governing eligibility, coverage, and cost differ from state to state (eg, some are completely free, some have family cost-sharing based on income), it is helpful to know the rules where you live. A good explanation of EI in the context of the medical home is available at http://www.medicalhomeinfo.org/health/Downloads/EIBrochureF.pdf.

School services traditionally begin when the child reaches the age of 3 years (Part B of IDEA). Children with any ASD are eligible under the special education category of "autism"-1 of 13 such classifications. The child's parents and school personnel work as a team to form an Individualized Education Plan (IEP) and agree on what the appropriate education entails. This plan dictates services and placement, which then obligates the school district to cover the related costs. A parent guide that details the special education process is available at http://ed.gov/parents/needs/speced/iepguide/iepguide.pdf.

Also see whether your state partners with the National Professional Development Center (NPDC) on ASDs. The NPDC provides professional development for teachers and practitioners who serve persons with ASDs from birth through age 22 years. For more information on the NPDC, go to http://autismpdc.fpg.unc.edu.

Keep track of the child's educational and behavioral progress in the medical chart

6

School documentation on the child receiving special education services is rarely provided to the pediatrician unless it is specifically requested. Yet it contains crucial information that can help you evaluate your patient and determine whether any further advocacy or interventions may be warranted. Be sure to ask the family to bring you a recent copy of the IEP. This is renewed every year as long as the child continues to qualify for special education. Other helpful records include the results of psychoeducational testing, progress reports, and behavior documents.

Another way to obtain school documentation is to seek a release of educational records. However, remember, school systems follow the Family Educational Rights and Privacy Act (FERPA), not the Health Insurance Portability and Accountability Act (HIPAA). In order to receive these necessary educational records, families must complete an authorization that allows the school to release information to the physician. The authorization is usually available at the school and would be preferable to a medical release at the physician's office that may not be consistent with FERPA wording.

Know when to engage health insurance and Medicaid

7

School-based services for children with ASDs are usually not available all year round. Given the current financial constraints, relatively few children enrolled in school-based services are qualifying for extended school-year programming. To help families meet the National Academy of Sciences' recommendation of all-year programming, write a prescription for the necessary service (speech, occupational therapy, behavioral therapy) during "school-off" times; use the appropriate diagnosis code-299.00 for autism and 299.80 for other ASDs-and provide resources for center- or community-based therapies.

Always check the patient's insurance coverage. It is not unusual for services to be denied on the basis that they are educational and not medical. You can address this through proactive "letters of necessity." The Referrals section of the AAP Toolkit provides sample formats of this letter. It is also important to note your particular state's legislation regarding autism coverage and insurance mandate. For the current status of state autism insurance reform initiatives, visit the Autism Votes Web site (www.autismvotes.org) and click on State Initiatives.

Partner with educational institutions and research facilities

8

Although most communities have school interventions and community therapeutic providers, intensive research- based interventions, such as ABA, may not be available because of a lack of adequately trained providers or inadequate reimbursement through insurance programs. Some families may have to resort to fee-for-service practices, which can be prohibitively expensive (ABA-driven therapies can cost more than $40,000 per year). In such cases, it may be feasible to connect families with regional institutions' training programs in psychology, education, and behavioral analysis. These often have graduate and doctoral students who are in training for many of these interventions and who can provide therapies as part of a practicum, at a fraction of the cost, or as part of a research protocol that provides free access to usually unavailable therapies.

Broader clinical and research networks, such as the Autism Treatment Network (http://www.autismspeaks.org/science/programs/atn), also help families enroll in research protocols. One caveat regarding research protocols: the data on patients enrolled in them are usually not available to primary care providers.

When all else fails, call for help!

9

Sometimes busy pediatricians cannot be expected to delve deeply into the mysterious world of advocacy, with its ever-changing laws and a body of literature that is updated weekly. Despite having access to all this information, it never hurts to formally-or informally-consult a subspecialist or a regional advocacy center that may be more up to date with respect to the interventions and services available to families in your area. In addition, parent advocates can often play a key role in connecting families with much-needed supports, in both the educational and therapeutic arenas.

ServiceDescriptionAdditional information

Speech and language therapyDepending on the verbal aptitude of the child, the goal might be mastery of spoken language, use of signs or gestures to communicate, or the pragmatic (social) use of languageTo find a speech-language pathologist, contact the American Speech-Language-Hearing Association:

Augmentative communication (AC)Any tool, strategy, or technology that compensates for, enhances, expands, or helps develop expressive and receptive communication skillsFor examples of AC devices, see the GoTalk Communication Device Series from Spectronics:

Picture Exchange Communication System (PECS)PECS allows children with little or no verbal ability to communicate using picturesFor a video demonstrating PECS, go to

Occupational therapy (OT)OT can provide strategies for learning key tasks that can be practiced at home, in school, and in other settings; OT can also address sensory defensiveness, which is common in children with an ASDFor a podcast on the role of OT in children with ASD, go to

Social StoriesThe goal of a Social Story is to share accurate social information in a patient and reassuring manner that is easily understoodFor a video describing Social Stories, go to

Peer-mediated instruction (PMI)PMIFor a training module on PMI, go to

Video modeling (VM)VM is used to teach desired behaviors in children with ASDsFor more information on VM, visit The National Professional Development Center on ASDs Web site:

References:

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