The Board of Directors for the American Association on Intellectual and Developmental Disabilities, the oldest multidisciplinary association in the United States representing professionals within the field of intellectual and developmental disabilities (IDD), has a strong interest in seeking and promoting effective, evidence-based approaches to support people with IDD. This organization does not consider growth attenuation therapy as one of those appropriate supports.
Background
In 2006, Gunther and Diekema[i] published a description of an intervention they termed “growth attenuation therapy” in which a six year old girl with profound and multiple disabilities received hormone therapy, a hysterectomy, and bilateral mastectomy with the goal of keeping her stature and physical features undeveloped by halting growth prior to reaching her full adult size. They stated that they found it “hard to imagine how being smaller would be disadvantageous to a person whose mental capacity will always remain that of a young child” (p. 1016). In stating that there will be no significant future improvement from her baseline, Gunther and Diekema revealed that they and their colleagues recognized little potential for growth and development of this young child. The abundant evidence that all children are able to learn and that the cognitive capabilities of children with severe motor impairments can be grossly underestimated were not mentioned, nor were issues of bias and discrimination considered.
Families, often the primary support providers, may face extraordinary challenges raising their children and may seek this intervention out of fear not being able to continue support their loved one at home. They fear that as their children with significant and complex support needs grows, their physical care, transportation, and other personal support needs become more than the family can manage. These families look to medical professionals who have an obligation to “do no harm” to ensure that the risks of clinical interventions are outweighed by the anticipated benefits. To our knowledge, there have been no studies tracking intervention outcomes (e.g., medical complications, perceived individual and family wellbeing, impacts to the medical providers, or any other long-term effects). We do know, however, that high doses of estrogen and progesterone can increase risk of complications such a thrombosis [ii](blood clots). Further, surgical interventions such as hysterectomies and removal of breast buds introduce unnecessary risk inherently associated with surgery. Despite such concerns, this protocol has reportedly continued[iii] though it is controversial[iv] and not supported by evidence documenting either short- or long-term benefits on physical, social, or emotional wellbeing.
A legal investigation found that the surgical intervention described was not adequately considered by appropriate ethical review boards and was in direct violation of the laws of the State of Washington as court protections for the child, including the need for a court order for this extreme intervention, had not been pursued.[v] In this case, inadequate access to developmental evaluations or disability rights specialists suggests that the ethics review committee did not fully consider the disability rights perspective or meaningfully review the child’s current capacities or the longer-term impact of the treatment on her social, community participation, or quality of life outcomes.
The treatment continues to have proponents [vi]. Its supporters focus on its ethical application [vii], the access and equity issues that surround failing to offer the treatment [viii] and explore the extent to which court oversight is required at all. [ix]
Position
The AAIDD board has issued several statements on this issue: Its initial statement in 2007 strongly disagreed with Gunther and Diekema’s clinical intervention both because of ethical concerns (e.g., lack of respect for her autonomy) and a lack of any evidence in support of the intervention or its positive impact on long-term outcomes. In 2012, the AAIDD board reiterated its opposition to this intervention based on lack of evidence, the ethical challenges which continued to exist, and the foundational premise of autonomy for the people with IDD. In 2020, the AAIDD board concluded that growth attenuation therapy remained an intervention for which there was no objective evidence for an improved quality of life for the person with IDD in the short- or long-term. This 2026 statement is consistent with the previous positions of the AAIDD board: growth attenuation therapy is an inappropriate application of a medical intervention to address a societal problem, and the appropriate locus to address inadequate supports for people with IDD with extensive support needs, healthcare disparities, and discrimination are public policies and systems of support.
The AAIDD board endorses policies and actions that help families to raise their children with IDD at home and access meaningful systems of supports that build children’s capacities. We applaud the efforts of the many families and support professionals who are engaged in providing extraordinary care to children with extensive support needs and who continue to meet those needs throughout their adult lives. We also recognize the many challenges faced by physicians as they weigh treatment options and consider complex ethical concerns; however, growth attenuation therapy is a permanent bodily alteration without any evidence that there will be any benefit to the individual.
The AAIDD Board of Directors does not support the use of growth attenuation therapy. We view Gunther and Diekema’s intervention as an inappropriate medical solution for a societal problem. The Board supports policies that address the home, community, and educational support needs of children with IDD and enable people with IDD across the lifespan to have access to evidence-based systems of supports that promote their physical, social, and emotional wellbeing.
Adopted:
AAIDD Board of Directors
May 13, 2026
Previous versions adopted 2007, 2012, and 2020.
[*] While we assert that this is not a supported intervention or therapy, the term growth attenuation therapy is used as it is consistent with what is described in other writings.
[i] Gunther, D., & Diekema, D. (2006). Attenuating growth in children with profound developmental disability: A new approach to an old dilemma. Archives of Pediatrics and Adolescent Medicine, 160, 1013–1017.
[ii] Parasuraman, S., & Goldhaber, S. (2006) Venous Thromboembolism in Children. Circulation, 113 (2), e12-e16.
[iii] Pollock, A. J., Fost, N., & Allen, D. B. (2015). Growth attenuation therapy: practice and perspectives of paediatric endocrinologists. Archives of Disease in Childhood, 100(12), 1185.
[iv]Field, G. (2016) Should parents of severely disabled parents be allowed to stop their growth? New York Times Magazine. March 27, 2016. https://www.nytimes.com/2016/03/27/magazine/should-parents-of-severely-disabled-children-be-allowed-to-stop-their-growth.html
[v] Washington Protection and Advocacy System (2007) https://dredf.org/public-policy/ethics/investigative-report-regarding-the-ashley-treatment/ (
[Vi]Growth attenuation therapy in children with severe physical and cognitive disabilities. Brown Pediatrics Residency. https://brownpedsresidency.org/growth-attenuation-therapy/
[Viii]Brown, S.D., Kennedy, K.O., Holder-Niles, F.F., Anselm, I.A., Snyder, B.D. Fogelman, D., Kirber, M.F., Kober, G., Holm, I. & Marron, J. M. (2025). Growth attenuation therapy: Ongoing ethical and practical challenges 20 years post Ashley. The American Journal of Bioethics. https://doi.org/10.1080/15265161.2025.2497982
[iX]Spyrou, P. (2020). Considering the provision of growth attenuation treatment to profoundly disabled children in light of the family court’s welfare jurisdiction. University of Adelaid Law Research Paper No 2020-57. https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3625366