Position Statement of AAIDD
Unjustifiable Non-therapy: There is not objective evidence in support of growth attenuation therapy[*] for young people with disabilities, as first described by Gunther & Diekma (2006). A statement from the Board of Directors of the American Association on Intellectual and Developmental Disabilities.
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] Reports of hospital ethics committee reviews have not included full developmental evaluations or disability rights specialists. This is concerning and suggests that the ethics review committee did not fully consider the disability rights perspective on these issues, including a meaningful review of the child’s current and potential capacities as well as the longer-term impacts on outcomes, including social and community participation and quality of life.
Position
The AAIDD board issued an initial statement in 2007 strongly disagreeing with Gunther and Diekema’s clinical intervention because of both ethical concerns (e.g., lack of respect for her autonomy) and the lack of any evidence in support of the intervention or any positive impact on long-term outcomes. An updated statement from the AAIDD board in 2012 reiterated 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. This current position statement was developed after a review of existing and available evidence, as well as social and ethical arguments. It concludes that the use of growth attenuation therapy remains an inappropriate application of a medical intervention to address societal problems related to a lack of effective systems of support for people with IDD who have extensive support needs as well as ongoing biases and discrimination directed towards people with complex support needs. A lack of available support (real or perceived) cannot be used to justify interventions for which there is no objective evidence for an improved quality of life for the person with IDD in the short- or long-term.
As individuals and as an organization, we endorse policies and actions that help families to rear their children with intellectual and other developmental disabilities at home, accessing meaningful systems of supports that build children’s capacities while addressing support needs. 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 with families the benefits versus costs of various treatment options and struggle with the complex ethical concerns that can arise.
We believe it is impossible for medical professionals to support this intervention as treatment effects have not been adequately documented. It is therefore unacceptable to use an unproven, invasive, and permanent intervention under the simple assertion that it will be effective and will not lead to unintended negative consequences to the person and the family over time.
Based on the discussion above, the AAIDD Board of Directors does not support the use of growth attenuation “therapy.” We view Gunther and Diekema’s intervention as an unacceptable option that does not constitute evidence-based medicine but is a medical “solution” for a societal problem. Recognizing the intense and immediate needs of families who might seek this clinical intervention, the Board supports policy initiatives that more fully address the home, community and educational support needs of children with IDD that enable families and young people with IDD to be empowered and have access to systems of supports that are evidence-based and promote physical, social, and emotional wellbeing.
Adopted:
AAIDD Board of Directors
June 10, 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 attenuaton 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 (retrieved March 30, 2020)
[v] Washington Protection and Advocacy System (2007) https://dredf.org/public-policy/ethics/investigative-report-regarding-the-ashley-treatment/ (Retrieved March 30, 2020)