Eilis O’Connell-Sussman, MA, BCBA, LBA-NY
Mary Jane Weiss, PhD, BCBA-D, LABA
Endicott College and Association for Science in Autism Treatment

Navigating the world of autism treatment can be overwhelming and confusing with hundreds of claims of effective treatments. In today’s information-rich world, one can quickly conduct a Google search and be flooded with different types of therapies offering apparent solutions and hope for individuals with autism and their families. Unfortunately, many therapies or treatments may not have validity or verification of effectiveness based upon scientific studies published in peer reviewed journals. Some descriptions of treatments may rely on personal stories and make exaggerated claims of success, leading to confusion related to the treatment’s actual impact/validity. Worse yet, are the alleged treatments that have scientific studies proving their ineffectiveness and potential harm to those utilizing them. It is important for individuals with autism and their families to have access to factual and unbiased information that assists them in making decisions that are safe and that lead to effective and meaningful outcomes. Some treatments have preliminary research and can be considered with caution, while others have been proven to not work and/or to be potentially dangerous, and these should be avoided.

Leading organizations that support scientific treatments frequently publish position statements to support people in navigating the plethora of therapies available for individuals with autism. Position statements will describe an organization’s viewpoint of a specific treatment and cite supporting evidence as to why that viewpoint is accepted, along with any findings from a task force or committee that has investigated the treatment. Position statements are helpful in that they make clear a reputable organization’s stance on certain treatments, which is supported by the current literature and scientific findings.

Not all invalid or untested treatments currently have position statements, so it is important to reach out to trusted professionals when researching treatments. ASAT maintains an overview that describes the scientific backing of marketed treatments and breaks them up into three categories: what works, what needs more work, and what does not work or is untested. Autism New Jersey uses a helpful visual of a stop light to list interventions within green: treatments shown through research to be most effective for autistic individuals; yellow: have not been studied enough or at all; and red: shown through research to be harmful or ineffective for individuals with autism. Additionally, the Wisconsin Department of Health Services has an active committee that reviews the effectiveness of treatments and has a helpful table that rates treatment evidence from 1 (well established) to 5 (untested/potentially harmful/experimental treatment).

Currently, there are several position statements about treatments that are ineffective or harmful from a variety of organizations that are available to the public. It is important to review these position statements, discuss the information with a trusted professional, and stay up to date on new findings. The Association for Science in Autism Treatment (ASAT) has compiled a list of position statements and it is provided here to support those seeking information on various treatments. Please note that this list is not exhaustive.

Treatments vary along dimensions of evidence; some have not been studied yet; some do not have enough scientific validity to be deemed evidence-based; some have definitive studies proving the ineffectiveness of the method; and some have evidence of the treatment being dangerous. It is important to remain current with treatments that have limited research, as available data may expand to either lend support to their effectiveness or demonstrate their illegitimacy. Additionally, stay informed of red flags within treatments that allude to pseudoscience or are associated with anti-science perspectives; these may include treatments that involve ingestion of certain “remedies,” an inability to question the process or founder of the intervention, utilization of personal stories versus clinical research, and more. Seek the support of trusted medical and clinical professionals, along with reputable online sources that regularly review and update research related to various treatments.

It is our hope that this non-exhaustive list of position statements supports individuals and their families on their quest for effective and safe treatments.

Auditory Integration Training

Auditory Integration Training (AIT) is an intervention that begins with a hearing test to identify how loud certain sounds must be to be heard. From here, an auditory training practitioner determines if AIT is appropriate and, if so, a treatment program is provided that includes 20 half hour sessions during a 10-12-day period with at least two sessions a day. Treatment consists of listening to music that removes frequencies the participant demonstrates reactions towards and then controls the volume of auditory sound with a special device (AAP, 1998). The American Speech-Language Hearing Association (ASHA) created a working group to evaluate the current evidence on AIT in 2004, and to review whether it had sufficient scientific evidence as an effective therapy. ASHA compiled its results related to different diagnoses, including autism spectrum disorder (ASD), central auditory processing disorder (CAPD), social communication disorder, and spoken language disorders. Their previously published position statement stated that AIT had not yet met scientific standards for efficacy as a therapy for individuals with ASD by audiologists and speech-language pathologists. This approach has also been associated with some reports of documented harm, increasing the risk.

Attachment Therapy

Attachment therapy, also known as “bonding therapies” encompasses several interventions that are built on the theory that individuals with autism and their caregivers need to facilitate greater attachment or bonding through holding therapy (ASAT, n.d-a). In holding therapy, a caregiver will utilize forcible physical touch to prevent their child from distancing themselves. Variants of attachment therapy can also utilize coercive, restraining, and aversive procedures such as unwanted deep tissue massage, aversive tickling, punishments related to food and water intake, restricting children’s access to normal social relationships outside of the caregiver, encouraging children to regress to an infant status, and “reparenting”, or techniques that provoke “cathartic emotional discharge” (Chaffin et al., 2006). The American Professional Society on the Abuse of Children (APSAC) created a task force to review the different treatments related to attachment therapy and to weigh the risks/benefits of attachment therapies. Their 2006 task force report reviewed the different types of therapies, the controversies related to attachment therapies stated above, and recommendations related to diagnoses and assessments of “attachment problems,” child welfare, and treatments and interventions. The APSAC reported that any intervention techniques involving physical coercion, enforced holding, physical restraint, physical domination, provoked catharsis, withholding food or water, prolonged social isolation, or exaggerated levels of control have no proven benefit and should not be used due to an established risk of harm for participants. This approach is especially concerning given the lack of child agreement and the level of intrusiveness associated with the procedure.

Chelation Therapy

Chelation Therapy provides medications that are intended to lower levels of mercury, lead, or other heavy metals, and are to be taken every other week, until urine levels are found to be stabilized (ASAT, n.d.-b). Once this is completed, the participant takes lipoic acid to chelate the metal that is tightly bound to one’s cells. The American Academy of Pediatrics (AAP) published a response to a parent considering chelation therapy in 2001 stating they did not support the use of chelation therapy for individuals with autism and stated potential side effects and risks of using this therapy. This procedure has been associated with severe medical complications and death and is extremely dangerous.

Complementary Alternative Medicine

Complementary Alternative Medicine can include a variety of treatments including dietary supplements, massage therapy, and acupuncture. The National Center for Complementary and Integrative health describes the alternative treatments and their current evidence to date. There has been research to demonstrate effectiveness of melatonin to support people with autism and sleep disturbances. Special diets, omega-3 fatty acid supplements, massage therapy, and acupuncture have limited evidence on whether they support symptoms of autism and should not replace evidence-based treatments. Secretin, hyperbaric oxygen, and anti-fungal agents do not have scientific evidence and may have dangerous side effects. It is important to speak with a medical professional about any complementary alternative medicines to ensure their safety and effectiveness.

Facilitated Communication

Facilitated Communication (FC) is a therapy that claims to provide individuals with autism a mode of communication through a service provider supporting the participants hands, wrists, or arm to assist them in spelling messages on a keyboard or a board with printed letters. FC provides physical support and stabilization to the participant’s arm, wrist, or hand along with emotional encouragement so they may initiate communication. FC provides ongoing assistance and does not have a system of prompt/cue fading over time even though providers of FC state the goal is for an individual to independently write or type on their own for communication. FC has been around for decades and has taken on different names such as supported typing, saved by typing, spelling to communicate, and typing to communicate (Celiberti & Daly, 2020). A similar treatment to FC, called Rapid Prompting Method, will be described further below. Multiple position statements have been published by various organizations that have reviewed the scientific evidence. All these organizations have emphasized that it has been proven that the communication is produced by the facilitator, rather than the individual with autism, thus discounting its credibility. Additionally, several organizations identified the harmful side-effects of raising false hope due to assumptions that the individual can be “accessed” through the advertised approach to communication. Additionally, the technique has led to false allegations of abuse, and significant unwarranted family disruptions. The following position statements are listed by organization:

Marijuana

Marijuana has been used by some suggesting that it can treat symptoms of autism spectrum disorder (ASD; Harrison & Zane, 2017). Increasing numbers of states have legalized the distribution of marijuana making it accessible for individuals to purchase. The AAP released a policy statement regarding the impact of the legalization of marijuana on youth. The AAP states that they are currently against the use of marijuana with children ages 0-21 years old, due to negative effects on brain development. The AAP states that medical marijuana, as regulated by the US Food and Drug Administration (FDA) for life-limiting and severely debilitating conditions, may be considered. There is not yet any credible or compelling data showing that it has therapeutic value for ASD, and the concerns on brain development are significant.

Patterning

Patterning consists of different exercises that claim to improve the neurologic organization of the participant. The exercises are performed by several people who manipulate the child’s head and extremities in patterns that simulate prenatal and postnatal movements of neurotypical children over many hours of a day (AAP, 2018). The AAP published a policy statement on patterning in 1999, which was reaffirmed in 2010. The AAP reports that patterning is based on outdated theories of brain development and should not be utilized.

Rapid Prompting Method

Rapid Prompting Method (RPM) is a treatment that aims to teach communication by using a letter board and quickly delivered prompts that are meant to match the rate of the participants engagement in stereotypic behaviors (Daly & Celiberti, 2021). Many professionals state that RPM is similar in practice to FC, as it is associated with significant prompting by a facilitator, along with the viewpoint that the participant has latent abilities that the intervention demonstrates (Daly & Celiberti, 2021). ASHA published a position statement in 2018 and did not recommend the use of RPM due to prompt dependency and a lack of scientific validity. Similarly, the AAIDD also discusses their position on RPM, emphasizing the lack of evidence and concern over authorship of the produced messages. The similarity to FC has been noted by several organizations, and there are no data to support its use at this time.

Sensory Integration Therapies

Sensory Integration Therapies involves activities that are proposed to organize the sensory system of an individual by providing proprioceptive, vestibular, auditory, and tactical inputs (AAP, 2012) and is usually provided by an Occupational Therapist (OT). Sensory integration therapies may take the form of brushing, swings, and other equipment designed to provide specific sensory input. The AAP recommends that pediatricians do not use sensory processing disorder as a diagnosis; rather, they should investigate other relevant diagnoses that encompass sensory symptoms (AAP, 2012). Sensory integration therapies should be approached with caution, as there is limited data to their effectiveness. The AAP recommended that families speak to their pediatrician about the allocation of limited resources and about how to determine whether a therapy is effective.

References

American Academy of Pediatrics. (1999). The treatment of neurologically impaired children using patterning. Pediatrics, 104(5), 1149-1151. https://doi.org/10.1542/peds.104.5.1149

American Academy of Pediatrics (2012). Sensory integration therapies for children with developmental and behavior disorders. Pediatrics, 129(6), 1186-1189. https://doi.org/10.1542/peds.2012-0876

American Academy of Pediatrics. (2015). The impact of marijuana policies on youth: Clinical, research, and legal updates. Pediatrics, 135(3), 584-587. https://doi.org/10.1542/peds.2014-4146

American Association on Intellectual and Developmental Disabilities. (2019, January 9). Facilitated Communication and Rapid Prompting Method. https://www.aaidd.org/news-policy/policy/position-statements/facilitated-communication-and-rapid-prompting-method

American Psychological Association. (1994). Resolution on Facilitated Communication by the American Psychological Association. http://www.division33.org/s/Resolution-on-Facilitated-Communication-by-the.pdf

American Speech-Language-Hearing Association. (2004). Auditory Integration Training [Position Statement]. American Speech-Language-Hearing Association. https://www2.asha.org/articlesummary.aspx?id=8589947218

American Speech-Language-Hearing Association. (2018a). Facilitated Communication [Position Statement. https://www.asha.org/policy/ps2018-00352/

American Speech-Language-Hearing Association (2018b). Rapid Prompting Method. American Speech-Language-Hearing Association. https://www.asha.org/policy/ps2018-00351/

Association for Behavior Analysis International. (1995). Statement on Facilitated Communication, 1995. Association for Behavior Analysis International. https://www.abainternational.org/about-us/policies-and-positions/facilitated-communication,-1995.aspx

Association for Science in Autism Treatment (ASAT). (n.d.-a). Bonding Attachment Therapies. ASAT. https://asatonline.org/for-parents/learn-more-about-specific-treatments/bonding-attachment-therapies/

Association for Science in Autism Treatment (ASAT). (n.d.-b). Chelation Therapy. ASAT. https://asatonline.org/for-parents/learn-more-about-specific-treatments/chelation-therapy/

Celiberti, D., & Daly, K. (2020). A treatment summary of Facilitated Communication. Science in Autism Treatment, 17(8). https://asatonline.org/for-parents/learn-more-about-specific-treatments/facilitated-communication/

Chaffin, M., Hanson, R., Saunders, B. E., Nichols, T., Barnett, D., Zeanah, C., Berliner, L., Egeland, B., Newman, E., Lyon, T., Letourneau, E., & Miller-Perrin, C. (2006). Report of the APSAC task force on Attachment Therapy, Reactive Attachment Disorder, and attachment problems. Child Maltreatment, 11(1), 76-89. https://doi.org/10.1177/1077559505283699

Daly, K., & Celiberti, D. (2021). A treatment summary of Rapid Prompting Method. Science in Autism Treatment, 18(1). https://asatonline.org/for-parents/learn-more-about-specific-treatments/rapid-prompting-method-rpm/

Harrison K. L., & Zane, T. (2017). Focus on science: Is there science behind that?: Autism and treatment with marijuana. Science in Autism Treatment, 14(4), 12-15. https://asatonline.org/for-parents/becoming-a-savvy-consumer/treatment-marijuana/

International Society for Augmentative and Alternative Communication. (2014). ISAAC position statement on Facilitated Communication. Augmentative and Alternative Communication, 30(4), 357-358. https://doi.org/10.3109/07434618.2014.971492

Shannon, M., Levy, S. E., & Sandler, A. (2001). Chelation therapy neither safe nor effective as autism treatment. AAP News, 19(2), 63-63. https://www.aappublications.org/content/19/2/63

Speech-Language & Audiology Canada. (2018). Use of Facilitated Communication and Rapid Prompting Method. https://www.sac-oac.ca/sites/default/files/resources/sac_official_statement_on_facilitated_communication_and_rapid_prompting_method_jan2018_en.pdf

Citation for this article:

O’Connell-Sussman, E., & Weiss, M. J. (2021). A non-exhaustive list of current position statements related to autism treatment. Science in Autism Treatment, 18(11).

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