The Autistic Self Advocacy Network appreciates the opportunity to submit comments for the January 18th, 2023 IACC meeting. In our last comments to the IACC, ASAN discussed our opposition to splitting autism into multiple diagnoses. In particular, we discussed our opposition to the proposed diagnostic categories of “profound autism” and “severe autism” on the grounds that a) these categories do not have a standard definition shared by all proponents of them, b) these categories are merely old, harmful functioning labels resurrected, and c) these categories promote segregation of autistic people with the most significant support needs instead of community integration. We encouraged the IACC to reject calls for the adoption of “severe” or “profound” labels and instead encourage the IACC to support research into inclusive supports and services to help all autistic people achieve community integration.
In our present comments, we reiterate our support for research on communication access and different forms of augmentative and alternative communication for autistic people. Although the IACC has taken steps to align its research agenda with the research priorities of autistic adults, there is still a ways to go regarding research into communication access. We also call on the IACC to promote the Home and Community Based Services Final Regulation when it goes into effect in March of this year. The Home and Community Based Services Final Regulation is an important rule that lays out the minimum standards for home and community based services providers The Rule is finally going into effect nine years after it was originally made. Finally, we give an update regarding legislation around banning the use of electric skin shock for behavior modification to “treat” aggression or self-injury and what the next steps are to fully ban this inhumane practice. We ask the IACC to pressure the FDA to pass a new ban without delay as people who are currently subjected to this practice cannot wait any longer for a ban.
Continued Focus and Support for Communication Access
ASAN has previously submitted comments to the IACC focusing on support for communication access beyond oral speech. As we stated in those comments, there is troublingly little research in IACC’s database from 2018 (the last year available) focused on supporting methods of communication other than oral speech. The majority of the communication research in IACC’s database focuses on why autism may impact oral speech and how to develop oral speech in nonspeaking or minimally speaking individuals. ASAN believes that, while oral speech is not necessary to live a fulfilled and meaningful life, access to a robust form of communication is. Research estimates that approximately 1 in 3 autistic people do not develop oral speech, even after years of intervention. This research does not count the number of autistic people who can use oral speech sometimes but not always, or who gain oral speech through interventions but lose it again eventually. Given these facts, it is of the utmost importance that proportionate funding go towards research that supports understanding and providing augmentative and alternative communication (AAC) interventions for any autistic person who may need them.
Communication is an essential human right. All people, including autistic people, need access to communication in order to express their wishes, wants, needs, and to advocate for themselves. Autistic people, like all people, may use a wide variety of communication modalities such as speech, signed languages, gestures, behavior as communication, written communication, and low- or high-tech AAC systems. We urge the IACC to support research that values all robust methods of communication and helps all autistic people find the right method of communication for them.
We know from research that AAC can be highly effective for individuals with speech disabilities generally. We also know that a robust system of communication is essential for reducing “challenging behavior” and improving quality of life. However, we still need more research on AAC for autistic people, particularly autistic adults, autistic people who can speak some of the time, autistic people of color, and autistic people with multiple disabilities. We have limited best practice guidelines, for example, on supporting nonspeaking autistic people with motor differences such as apraxia. Little research-based guidance exists for supporters of autistic people, such as parents, teachers, support workers, and therapists, on developing a robust system of communication. By robust system, we mean a system of communication that allows autistic people to say whatever we want, not just make simple requests. Autistic people need access to communication systems that allow us to joke, argue, tell stories, and question. We need communication systems that allow us to say more than “I want juice.”
Therefore, ASAN encourages the IACC to prioritize research into best practices in AAC for autistic people. Specifically, this includes research on support for communication partners, instruction in grammar and syntax, accommodations for motor and physical disabilities, and accommodations for executive functioning disabilities. The autistic community also desperately needs research into which communication methods and supports are most effective for which autistic people. Moreover, we need research into cultural competency and cultural relevance in AAC interventions for multiply marginalized autistic people, such as autistic people of color, autistic people whose first language is not English, and LGBTQ+ autistic people.
Promotion of Full Compliance with HCBS Settings Rule
The Home and Community Based Services Final Regulation (herein referred to as the HCBS Settings Rule or the Rule) will go into effect on March 17, 2023. The HCBS Settings Rule sets minimum standards for what a setting or place must do to be considered truly home and community based and not just an institution by any other name. We urge the IACC to promote full compliance, on both the state and service provider level, with the HCBS Settings Rule.
ASAN believes the HCBS Settings Rule will have a marked impact on the lives of many autistic people who receive HCBS, as well as people with disabilities who receive HCBS more generally. The Rule sets basic standards for what kinds of protections and rights service providers must provide to their clients with disabilities. For instance, the Rule specifies that people who receive HCBS in residential settings (such as group homes or assisted living facilities) must have basic privacy rights such as controlling who can come into their bedroom or living space, having a key to their bedroom or living space, and being able to lock the door to their bedroom or living space. The Rule also specifies that all people who receive HCBS have the right to respect and privacy, and the right to be free of restraint and seclusion. These are basic rights that most people without disabilities take for granted. Furthermore, these are basic rights that are currently being denied to many people with disabilities who receive HCBS. It is imperative that the IACC pressure states and service providers to comply with the Rule. It will impact the lives of the many autistic people who receive HCBS.
By the time the HCBS Settings Rule finally goes into effect, states and service providers will have had nine years to come into compliance with the Rule. This includes multiple postponements of the Rule going into effect due to the COVID-19 pandemic. It also includes allowances for states to not implement all the parts of the Rule right away, so long as they have filed a Corrective Action Plan with CMS, who administers the Rule. Nine years is more than enough time for states and service providers to come into compliance with the Rule. Once the Rule goes into effect, we urge the IACC to promote full compliance with the Rule, at the federal, state, and service provider level.
Following Up with FDA on Electric Shock Ban
In the Consolidated Appropriations Act, 2023, Congress and the President authorized the FDA to ban medical devices for one or more uses. This authorizes the FDA to ban the use of electric skin shock for the purpose of behavior modification to “treat” aggression or self-injury. Previously, the FDA sought to ban skin shocks behavior modification to “treat” aggression or self-injury but the ban was overturned by the DC Circuit Court on the technicality that the FDA was only banning the practice for one purpose. Now, the FDA has the chance to re-ban the electric skin shock for behavior modification.
ASAN urges the IACC to pressure the FDA to re-ban skin shocks. The use of skin shocks has been condemned as torture by the United Nations Special Rapportuer on Torture. The adults on this device at the Judge Rotenberg Center, the only place where the electric skin shock for behavior modification is still used, have intellectual and developmental disabilities, including autism.
The FDA has already banned the use of electric skin shock as used at the JRC once, saying that they “determined that these devices present an unreasonable and substantial risk of illness or injury.” We urge the IACC to reach out to the FDA as soon as possible and explain why a new ban is necessary. This is an urgent matter: people who are currently being shocked at the JRC do not have the luxury of waiting. Every day the FDA waits to act is another day people are being shocked for “offenses” as small as refusing to take off their coat. The IACC urging the FDA to re-ban skin shock would make a strong statement about the rights of autistic people and other people with intellectual and developmental disabilities to be free of this torturous practice. We again thank the IACC for inviting interested stakeholders to comment and help the IACC direct the future of autism research. For more information on ASAN and the autistic community’s research priorities, please contact Larkin Taylor-Parker, our Legal Director, at ltaylorparker@autisticadvocacy.org.
1. Tager-Flusberg, H., & Kasari, C. (2013). Minimally Verbal School-Aged Children with Autism Spectrum Disorder: The Neglected End of the Spectrum. Autism Research : Official Journal of the International Society for Autism Research, 6(6), 10.1002/aur.1329. https://doi.org/10.1002/aur.1329
2. See, for example: Donaldson, A. L., corbin, endever*, & McCoy, J. (2021). “Everyone Deserves AAC”: Preliminary Study of the Experiences of Speaking Autistic Adults Who Use Augmentative and Alternative Communication. Perspectives of the ASHA Special Interest Groups, 6(2), 315–326. https://doi.org/10.1044/2021_PERSP-20-00220; Donaldson, A. L., corbin, endever*, Zisk, A. H., & Eddy, B. (2022). Promotion of Communication Access, Choice, and Agency for Autistic Students. 3. Language, Speech, and Hearing Services in Schools, 1–16. https://doi.org/10.1044/2022_LSHSS-22-00031; Hillary, A. (2019). Am I the curriculum? Curriculum Inquiry, 49(4), 373–386. https://doi.org/10.1080/03626784.2019.1664255; Zisk, A. H., & Dalton, E. (2019). Augmentative and Alternative Communication for Speaking Autistic Adults: Overview and Recommendations. Autism in Adulthood, 1(2), 93–100. https://doi.org/10.1089/aut.2018.0007
3. National Joint Committee for the Communication Needs of Persons with Severe Disabilities. (n.d.). Communication Bill of Rights. American Speech-Language-Hearing Association; American Speech-Language-Hearing Association. Retrieved January 9, 2023, from https://www.asha.org/njc/communication-bill-of-rights/; United Nations Convention on the Rights of Persons with Disabilities, Articles 9 and 21, December 13, 2006, https://www.ohchr.org/en/hrbodies/crpd/pages/conventionrightspersonswithdisabilities.aspx
4. Beukelman, D. R., Fager, S., Ball, L., & Dietz, A. (2007). AAC for adults with acquired neurological conditions: A review. Augmentative and Alternative Communication, 23(3), 230–242. https://doi.org/10.1080/07434610701553668; May, A. A., Dada, S., & Murray, J. (2019). Review of AAC interventions in persons with dementia. International Journal of Language & Communication Disorders, 54(6), 857–874. https://doi.org/10.1111/1460-6984.12491; McNaughton, D., & Light, J. (2015). What We Write about When We Write About AAC: The Past 30 Years of Research and Future Directions. Augmentative and Alternative Communication, 31(4), 261–270. https://doi.org/10.3109/07434618.2015.1099736; Morris, M., Dudgeon, B., & Yorkston, K. (2013). A qualitative study of adult AAC users’ experiences communicating with medical providers. Disability and Rehabilitation. Assistive Technology, 8. https://doi.org/10.3109/17483107.2012.746398; Sigafoos, J., Didden, R., Schlosser, R., Green, V. A., O’Reilly, M. F., & Lancioni, G. E. (2008). A Review of Intervention Studies on Teaching AAC to Individuals who are Deaf and Blind. Journal of Developmental and Physical Disabilities, 20(1), 71–99. https://doi.org/10.1007/s10882-007-9081-5
5. Walker, V. L., & Snell, M. E. (2013). Effects of Augmentative and Alternative Communication on Challenging Behavior: A Meta-Analysis. Augmentative and Alternative Communication, 29(2), 117–131. https://doi.org/10.3109/07434618.2013.785020; Drager, K., Light, J., & McNaughton, D. (2010). Effects of AAC interventions on communication and language for young children with complex communication needs. Journal of Pediatric Rehabilitation Medicine, 3(4), 303–310. https://doi.org/10.3233/PRM-2010-0141; Hamm, B., & Mirenda, P. (2006). Post-school quality of life for individuals with developmental disabilities who use AAC. Augmentative and Alternative Communication (Baltimore, Md. : 1985), 22, 134–147. https://doi.org/10.1080/07434610500395493; Saito, Y. (2007). Augmentative and Alternative Communication Practice in the Pursuit of Family Quality of Life: A Review of the Literature. Research and Practice for Persons with Severe Disabilities, 32(1), 50–65. https://doi.org/10.2511/rpsd.32.1.50
6. Huston, L. (2021, June 23). AAC Features that Need to be Developed to Include Marginalized Communities [Webinar]. AAC in the Cloud. https://www.youtube.com/watch?v=hIhbPI4olkM
7. Disabled and Elderly Health Programs Group. (2022, May 24). HCBS Settings Rule Implementation – Moving Forward Toward March 2023 & Beyond [Webinar]. https://www.medicaid.gov/sites/default/files/2022-06/covid19allstatecall05242022.pdf
8. Chapter 2, Subtitle C, Section 3306. Bill text is available here: https://www.appropriations.senate.gov/imo/media/doc/JRQ121922.PDF
9. No. 20-1087, Judge Rotenberg Educational Center, Inc., et al v. U.S. Food and Drug Admin., et al (Jul. 6, 2021) (hereinafter JRC v. FDA), https://www.cadc.uscourts.gov/internet/opinions.nsf/C32A7577ED02127D8525870A00555511/$file/20-1087-1905079.pdf.
10. Méndez, J. E. (2013). Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment [Data set]. United Nations General Assembly. https://www.ohchr.org/sites/default/files/Documents/HRBodies/HRCouncil/RegularSession/Session22/A-HRC-22-53-Add4_EFS.pdf
11. Neumeier, S. M., & Brown, L. X. Z. (2020). Torture in the Name of Treatment: The Mission to Stop the Shocks in the Age of Deinstitutionalization. In S. K. Kapp (Ed.), Autistic Community and the Neurodiversity Movement: Stories from the Frontline (pp. 195–210). Springer. https://doi.org/10.1007/978-981-13-8437-0_14
12. ASAN, 243 Other Orgs Urge FDA to #StopTheShock—Autistic Self Advocacy Network. (2019, March 6). Https://Autisticadvocacy.Org/. https://autisticadvocacy.org/2019/03/asan-243-other-orgs-urge-fda-to-stoptheshock/
ASAN IACC Meeting Comments for January 18, 2023
The Autistic Self Advocacy Network appreciates the opportunity to submit comments for the January 18th, 2023 IACC meeting. In our last comments to the IACC, ASAN discussed our opposition to splitting autism into multiple diagnoses. In particular, we discussed our opposition to the proposed diagnostic categories of “profound autism” and “severe autism” on the grounds that a) these categories do not have a standard definition shared by all proponents of them, b) these categories are merely old, harmful functioning labels resurrected, and c) these categories promote segregation of autistic people with the most significant support needs instead of community integration. We encouraged the IACC to reject calls for the adoption of “severe” or “profound” labels and instead encourage the IACC to support research into inclusive supports and services to help all autistic people achieve community integration.
In our present comments, we reiterate our support for research on communication access and different forms of augmentative and alternative communication for autistic people. Although the IACC has taken steps to align its research agenda with the research priorities of autistic adults, there is still a ways to go regarding research into communication access. We also call on the IACC to promote the Home and Community Based Services Final Regulation when it goes into effect in March of this year. The Home and Community Based Services Final Regulation is an important rule that lays out the minimum standards for home and community based services providers The Rule is finally going into effect nine years after it was originally made. Finally, we give an update regarding legislation around banning the use of electric skin shock for behavior modification to “treat” aggression or self-injury and what the next steps are to fully ban this inhumane practice. We ask the IACC to pressure the FDA to pass a new ban without delay as people who are currently subjected to this practice cannot wait any longer for a ban.
Continued Focus and Support for Communication Access
ASAN has previously submitted comments to the IACC focusing on support for communication access beyond oral speech. As we stated in those comments, there is troublingly little research in IACC’s database from 2018 (the last year available) focused on supporting methods of communication other than oral speech. The majority of the communication research in IACC’s database focuses on why autism may impact oral speech and how to develop oral speech in nonspeaking or minimally speaking individuals. ASAN believes that, while oral speech is not necessary to live a fulfilled and meaningful life, access to a robust form of communication is. Research estimates that approximately 1 in 3 autistic people do not develop oral speech, even after years of intervention. This research does not count the number of autistic people who can use oral speech sometimes but not always, or who gain oral speech through interventions but lose it again eventually. Given these facts, it is of the utmost importance that proportionate funding go towards research that supports understanding and providing augmentative and alternative communication (AAC) interventions for any autistic person who may need them.
Communication is an essential human right. All people, including autistic people, need access to communication in order to express their wishes, wants, needs, and to advocate for themselves. Autistic people, like all people, may use a wide variety of communication modalities such as speech, signed languages, gestures, behavior as communication, written communication, and low- or high-tech AAC systems. We urge the IACC to support research that values all robust methods of communication and helps all autistic people find the right method of communication for them.
We know from research that AAC can be highly effective for individuals with speech disabilities generally. We also know that a robust system of communication is essential for reducing “challenging behavior” and improving quality of life. However, we still need more research on AAC for autistic people, particularly autistic adults, autistic people who can speak some of the time, autistic people of color, and autistic people with multiple disabilities. We have limited best practice guidelines, for example, on supporting nonspeaking autistic people with motor differences such as apraxia. Little research-based guidance exists for supporters of autistic people, such as parents, teachers, support workers, and therapists, on developing a robust system of communication. By robust system, we mean a system of communication that allows autistic people to say whatever we want, not just make simple requests. Autistic people need access to communication systems that allow us to joke, argue, tell stories, and question. We need communication systems that allow us to say more than “I want juice.”
Therefore, ASAN encourages the IACC to prioritize research into best practices in AAC for autistic people. Specifically, this includes research on support for communication partners, instruction in grammar and syntax, accommodations for motor and physical disabilities, and accommodations for executive functioning disabilities. The autistic community also desperately needs research into which communication methods and supports are most effective for which autistic people. Moreover, we need research into cultural competency and cultural relevance in AAC interventions for multiply marginalized autistic people, such as autistic people of color, autistic people whose first language is not English, and LGBTQ+ autistic people.
Promotion of Full Compliance with HCBS Settings Rule
The Home and Community Based Services Final Regulation (herein referred to as the HCBS Settings Rule or the Rule) will go into effect on March 17, 2023. The HCBS Settings Rule sets minimum standards for what a setting or place must do to be considered truly home and community based and not just an institution by any other name. We urge the IACC to promote full compliance, on both the state and service provider level, with the HCBS Settings Rule.
ASAN believes the HCBS Settings Rule will have a marked impact on the lives of many autistic people who receive HCBS, as well as people with disabilities who receive HCBS more generally. The Rule sets basic standards for what kinds of protections and rights service providers must provide to their clients with disabilities. For instance, the Rule specifies that people who receive HCBS in residential settings (such as group homes or assisted living facilities) must have basic privacy rights such as controlling who can come into their bedroom or living space, having a key to their bedroom or living space, and being able to lock the door to their bedroom or living space. The Rule also specifies that all people who receive HCBS have the right to respect and privacy, and the right to be free of restraint and seclusion. These are basic rights that most people without disabilities take for granted. Furthermore, these are basic rights that are currently being denied to many people with disabilities who receive HCBS. It is imperative that the IACC pressure states and service providers to comply with the Rule. It will impact the lives of the many autistic people who receive HCBS.
By the time the HCBS Settings Rule finally goes into effect, states and service providers will have had nine years to come into compliance with the Rule. This includes multiple postponements of the Rule going into effect due to the COVID-19 pandemic. It also includes allowances for states to not implement all the parts of the Rule right away, so long as they have filed a Corrective Action Plan with CMS, who administers the Rule. Nine years is more than enough time for states and service providers to come into compliance with the Rule. Once the Rule goes into effect, we urge the IACC to promote full compliance with the Rule, at the federal, state, and service provider level.
Following Up with FDA on Electric Shock Ban
In the Consolidated Appropriations Act, 2023, Congress and the President authorized the FDA to ban medical devices for one or more uses. This authorizes the FDA to ban the use of electric skin shock for the purpose of behavior modification to “treat” aggression or self-injury. Previously, the FDA sought to ban skin shocks behavior modification to “treat” aggression or self-injury but the ban was overturned by the DC Circuit Court on the technicality that the FDA was only banning the practice for one purpose. Now, the FDA has the chance to re-ban the electric skin shock for behavior modification.
ASAN urges the IACC to pressure the FDA to re-ban skin shocks. The use of skin shocks has been condemned as torture by the United Nations Special Rapportuer on Torture. The adults on this device at the Judge Rotenberg Center, the only place where the electric skin shock for behavior modification is still used, have intellectual and developmental disabilities, including autism.
The FDA has already banned the use of electric skin shock as used at the JRC once, saying that they “determined that these devices present an unreasonable and substantial risk of illness or injury.” We urge the IACC to reach out to the FDA as soon as possible and explain why a new ban is necessary. This is an urgent matter: people who are currently being shocked at the JRC do not have the luxury of waiting. Every day the FDA waits to act is another day people are being shocked for “offenses” as small as refusing to take off their coat. The IACC urging the FDA to re-ban skin shock would make a strong statement about the rights of autistic people and other people with intellectual and developmental disabilities to be free of this torturous practice. We again thank the IACC for inviting interested stakeholders to comment and help the IACC direct the future of autism research. For more information on ASAN and the autistic community’s research priorities, please contact Larkin Taylor-Parker, our Legal Director, at ltaylorparker@autisticadvocacy.org.