We put together this article to explain some terminology when looking for a viable intervention for your loved one. This is a complex topic and this article scratches the surface. Our aim is to help families to have some tools in their tool box when seeking intervention for their loved ones.
The two most important takeaways from this article are:
- When comparing programs and treatments, look for evidence-based practices that show a positive impact based on rigorous scientific research and peer review by experts in the autism field.
- When comparing professionals, look for licensed, certified providers where possible because the associations and boards that certify/license professionals have systems in place to not only verify credentials, but also investigate, monitor, and act upon verified misconduct and unethical practices.There is no known “cure” for autism.
A 2019 article put it this way, “The most important thing about autism spectrum disorder (ASD) is that there is, in fact, no cure for this disorder; however, currently, there are many claims of pharmacological and dietary therapies and behavioral interventions that are said to improve outcome or even lead to ‘cure’ or ‘recovery.’”As if that weren’t enough for families to navigate, some practitioners say that they are “experts” in autism treatment, when they have no specific training, recognized credentials,or licensure in a health profession.Anyone can create a website, promise big results, and promote themselves an autism expert. But are they? In a world where there is no known cure, families need to be cautious about accepting claims at face value.This especially applies to the families of young adults who have aged out of high school and find themselves without services or options.They and their families are vulnerable.
- The Program for the Education and Enrichment of Relational Skills (PEERS®)is considered evidence-based. Currently DARS and The Choice Group are partnering to provide a 16-week program for young adults in Charlottesville. The curriculum has been extensively studied in prominent universities by autism researchers for nearly 20 years. And, new research in (PEERS®) continues to advance the understanding of this approach. The University of Virginia STAR researchers are recruiting participants for a social skills group for adolescent females ages 11 to 17 with ASD based on the (PEERS®) program.
- Applied Behavior Analysis is another evidence-based approach that has almost 50 years of continued research and practice. It is the behavioral approach that is used by VIA and Faison Center, both private special education day schools. These schools serve students through the age of 22 when their local education agencies cannot meet their educational needs. More information.
- The National Clearinghouse on Autism Evidence and Practice.
- Autism Speaks lists a number of accepted behavioral treatments and interventions for autism and related medical issues, such as, epilepsy, gastrointestinal problems, mental health issues, etc.
- In 2014 The National Professional Development Center on Autism Spectrum Disorder identified 27 targeted practices as evidence-based. “The 27 identified EBPs have been shown through scientific research to be effective when implemented correctly with students with ASD.”
- Real Hope, Real Science (Association for Science in Autism Treatment) has an excellent parents’ section on its website. It examines treatments and gives an opinion as to whether they are evidence-based, don’t work, or need more research
- The National Standards Project at the National Autism Center at the May Clinic publishes A Parent’s Guide to Evidence-Based Practice and Autism. It is 212 pages long, and full of great information about how to find reputable treatment options. It lists 11 “Established Treatments” that have been thoroughly researched and have enough evidence to state confidently that they are effective; 22 “Emerging Treatments”that have some evidence of effectiveness, but not enough for us to be confident that they are truly effective; and “Unestablished Treatments” for which there is no sound evidence of effectiveness. Examples of “Unestablished Treatments” include: Swimming with Dolphins, Marijuana Therapy, and Stem Cell Therapy.
- Autism Science Foundation’s list of non-evidence-based treatments is helpful.
- Autistic Self-Advocacy Network (ASAN)commissioned a report on First-Hand Perspectives on Behavioral Interventions for Autistic People and People With Other Developmental Disabilities. For this report, ASAN interviewed ten people about their time with Applied Behavioral Analysis (ABA), Floor time, and cognitive-behavioral therapy (CBT). This type of feedback from self-advocates about the various behavior treatments is invaluable for service providers and families alike; after all, they are the ones who have actually experienced these treatments.
When looking for professional help, look first for licensed, credentialed providers, if they are available for the service that you’re seeking. It’s a daunting task, but ask around, and research the options. Because autism is a multi-dimensional, complex disorder, there are many different types of professionals who may be involved, including: speech language pathologists, occupational therapists, social workers, therapists, psychiatrists, neurologists, psychologists, behavioral analysts, gastroenterologists, developmental pediatricians, general pediatricians, internists, family physicians, special educators, and vocational coaches to name a few.
Here are some credentialing terms to know:
- Accredited versus Non-accredited Colleges: Accreditation by a college is a voluntary process to validate their standards of education. Some licensing agencies (see below for more information about licensing) and employers do not accept a degree from a non-accredited college as proof of academic competence. Also even though a college may be accredited, all offered programs may not be accredited.Refer to this directory of accredited schools on the Council for Higher Education Accreditation’s website.
- Medical Specialties Board Certification/Recertification: A rigorous examination process that most medical professionals choose to pursue to demonstrate competency in their field. Make sure the “board certification” is actually in the area of expertise you need. There are 70 medical boards which certify physicians in each state. American Board of Medical Specialties certification lookup.
- Behavioral Analyst Certification: Of particular interest for individuals with autism, is the Board-Certified Behavior Analyst (BCBA)qualification. This certification board requires the applicant to hold a degree, learn behavior-analytic content, have experience or supervised fieldwork, and pass the BCBA certification examination.
- Licensure: If a profession can be licensed, it makes sense to look for a licensed professional for added confidence in a provider’s training and experience. In Virginia, the mission of the Department of Health Professions“is to ensure safe and competent patient care by licensing health professionals, enforcing standards of practice, and providing information to health care practitioners and the public.
Each state has its own licensing/monitoring boards(different ones for different specialties) though some states will accept other licenses as qualification to practice. Virginia’s health professionals licensure lookup is online for physicians, psychologists (applied and clinical), behavior analysts, speech and occupational therapists, social workers, and more. Full list of regulated health professions.
In most professions, a licensed provider has been through specific supervised training and completes a designated number of hours of on-going training. For example, in Virginia, licensure for professional counselors includes coursework in a number of very specific areas of study from an accredited college, supervised practice, and continuing education to keep current in the field.”
Online Grading and Reputation scores: What Do They Mean and Are They Helpful?
The answer is: it depends. We all know that online ratings for doctors and anything else are not guaranteed to be real or truthful. Some people only write reviews when they have a complaint.Some sites only review by select criteria, for example, punctuality and bedside manner, which may or not be your top concerns. And then there are the “Top Doctor” awards. You may assume, like we did in researching this topic, that a “Top Doctor” award actually meant something. This article burst our bubble: Top Doctor Awards Named Me a “Leading Physician” for Just $99, but I’m a Journalist.Obviously that is extreme. However, there are genuine peer-reviewed awards where objective measures apply. Those are the ones that matter.
Based on all this complexity, the bottom line is “buyer beware.”
CRAAG is interested in your comments on this article. Email CRAAG your thoughts to [email protected]