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

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

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.

Table 1 – Resource handout for parents of a child with an ASD

Resource Description Helpful materials

Autism Speaks
http://www.autismspeaks.org

Autism Response Team
888-288-4762

familyservices@autismspeaks.org

The 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 100 Day Kit is the definitive resource for families of children with newly diagnosed ASD

CDC – National Center on Birth Defects & Developmental Disabilities
http://www.cdc.gov/ncbddd/autism

800-232-4636

cdcinfo@cdc.gov

Aims 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 campaign to educate parents about child development and the early warning signs of ASDs and encourage developmental screening and intervention
? Free resource kits for health care and child-care professionals

Organization for Autism Research (OAR)
http://www.researchautism.org

703-243-9710

Mission is to use applied science to answer questions that parents, families, persons with autism, teachers, and caregivers confront daily
Online publications:
? An Educator's Guide to Autism for parents, teachers, and other professionals teaching a child with autism in the educational setting
? Parent's Guide to Assessment

Autism Society of America
http://www.autism-society.org

800-328-8476

The 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 Autism Advocate
? Annual national conference on autism
? Links to local chapters for families are particularly helpful

Future Horizons
http://www.fhautism.com

800-489-0727

Aims 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 Autism-Asperger's Digest features practical strategies for meeting the real-life challenges of ASD

Wrightslaw
http://www.wrightslaw.com
Leading 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 Press
http://www.nap.edu/catalog.php?record_id=10017#toc
Publishes reports from national institutions, offers free online access as a PDF read-and-print publication
? Educating Children with Autism—seminal publication outlines evidence-based educational interventions in children with ASDs and identifies characteristics of programs that work

ASD, autism spectrum disorder.

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