Skip to main content
Log in

The Ethics of Actually Helping People: Targeting Skill Acquisition Goals That Promote Meaningful Outcomes for Individuals with Autism Spectrum Disorder

  • Discussion and Review Paper
  • Published:
Behavior Analysis in Practice Aims and scope Submit manuscript

Abstract

As a field that predominately supports individuals with autism spectrum disorder (ASD), we have an ethical duty as behavior analysts to ensure that the goals we write and interventions we prescribe promote best outcomes across the lifespan. This is critical, given that as it stands now, outcomes in adulthood for individuals with ASD are poor in every area assessed. The Ethics Code for Behavior Analysts can be interpreted to provide support for teaching the right goals, the right way, with respect to inherent rights of those we serve, in order to help affect positive changes in these outcomes. The present article highlights ethical themes that are relevant in order to affect these changes that are supported by the Code, as well as actionable steps to take next. The aim is to provide a resource for practitioners to use in clinical practice and in making ethical decisions that will help to improve outcomes for individuals with autism in adulthood. In addition, recommendations are made about integrating these values and approaches in terms of training, supervision, advocacy, and research.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Subscribe and save

Springer+ Basic
$34.99 /Month
  • Get 10 units per month
  • Download Article/Chapter or eBook
  • 1 Unit = 1 Article or 1 Chapter
  • Cancel anytime
Subscribe now

Buy Now

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Similar content being viewed by others

Explore related subjects

Discover the latest articles, news and stories from top researchers in related subjects.

Data Availability

Not applicable.

Code Availability

Not applicable.

Notes

  1. A note about terminology: throughout this article, the terms “autism,” “on the autism spectrum,” “ASD,” “person with autism,” and “autistic person” are used interchangeably. Although the authors recognize that among the clinical, medical, and neurodiverse communities there are preferences and conventions in terminology use, the selection of terminology in this article is based on grammar and stylistic needs and does not reflect a particular terminological intent.

  2. The authors also note that, although this article is focused on ASD, the ideas discussed are applicable to a wide range of individuals, especially those with similar disability labels, such as various intellectual and developmental disabilities. Also, as is the case with all human behavior, the individual and their unique presentation of behavior within their given environment is more important than the specific disability label they may carry.

  3. It should be noted that the American Academy of Pediatrics asserted that, “Medically necessary services generally are defined as being clinically appropriate, based on evidence and likely to produce incremental health benefits that justify their cost” (Giardino, 2022). Thus, the medical necessity designation is open to interpretation and, it can be argued, supports teaching skills outside of the ASD diagnostic criteria that include vital adaptive behavior skills that promote independence.

References

  • Allen, K. D., Wallace, D. P., & Renes, D. (2010). Use of video modeling to teach vocational skills to adolescents and young adults with autism spectrum disorders. Education & Treatment of Children, 33(3), 339–349. https://doi.org/10.1353/etc.0.0101

    Article  Google Scholar 

  • Almalky, H. A. (2018). Investigating components, benefits, and barriers of implementing community-based vocational instruction for students with intellectual disability in Saudi Arabia. Education & Training in Autism & Developmental Disabilities, 53(4), 415–427. https://www.jstor.org/stable/26563483

  • American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). American Psychiatric Publishing.

  • Anderson, K. A., Sosnowy, C., Kuo, A. A., & Shattuck, P. T. (2018). Transition of individuals with autism to adulthood: A review of qualitative studies. Pediatrics, 141, 318–327. https://doi.org/10.1542/peds.2016-4300I

    Article  Google Scholar 

  • Autism Speaks. (n.d.a). Autism statistics and facts. https://www.autismspeaks.org/autism-statistics-asd

  • Autism Speaks. (2014). Community-based skills assessment (CSA): Developing a personalized transition plan. https://www.autismspeaks.org/tool-kit/community-based-skills-assessment

  • Autism Speaks. (n.d.b). State regulated health benefits. https://www.autismspeaks.org/state-regulated-health-benefit-plans

  • Ayllon, T., & Haughton, E. (1962). Control of the behavior of schizophrenic patients by food. Journal of the Experimental Analysis of Behavior, 5(3), 343–352. https://doi.org/10.1901/jeab.1962.5-343

    Article  PubMed  PubMed Central  Google Scholar 

  • Ayllon, T., & Michael, J. (1959). The psychiatric nurse as a behavioral engineer. Journal of the Experimental Analysis of Behavior, 2(4), 323–334. https://doi.org/10.1901/jeab.1959.2-323

    Article  PubMed  PubMed Central  Google Scholar 

  • Ayres, K. M., Douglas, K. H., Lowrey, K. A., & Sievers, C. (2011). I can identify Saturn but I can’t brush my teeth: What happens when the curricular focus for students with severe disabilities shifts. Education & Training in Autism & Developmental Disabilities, 45(1), 11–21.

    Google Scholar 

  • Ayres, K. M., Lowrey, K. A., Douglas, K. H., & Sievers, C. (2012). The question still remains: What happens when the curricular focus for students with severe disabilities shifts? A reply to Courtade, Spooner, Browder, and Jimenez (2012). Education and Training in Autism and Developmental Disabilities, 47(1), 14–22. http://www.jstor.org/stable/23880558

  • Ayres, M., Parr, J. R., Rodgers, J., Mason, D., Avery, L., & Flynn, D. (2018). A systematic review of quality of life of adults on the autism spectrum. Autism, 22(7), 774–783. https://doi.org/10.1177/1362361317714988

    Article  PubMed  Google Scholar 

  • Baer, D. M. (1998). Commentary: Problems in imposing self-determination. The Journal of the Association for Persons with Severe Handicaps, 23(1), 50–52. https://doi.org/10.2511/rpsd.23.1.50

  • Baer, D. M., Wolf, M. M., & Risley, T. R. (1968). Some current dimensions of applied behavior analysis. Journal of Applied Behavior Analysis, 1(1), 91–97. https://doi.org/10.1901/jaba.1968.1-91

    Article  PubMed  PubMed Central  Google Scholar 

  • Bak, M. S., Dueñas, A. D., Avendaño, S. M., Graham, A. C., & Stanley, T. (2021). Tact instruction for children with autism spectrum disorder: A review. Autism & Developmental Language Impairments, 6, 1–22. https://doi.org/10.1177/2396941521999010

    Article  Google Scholar 

  • Baker-Ericzén, M. J., Brookman-Frazee, L., & Brodkin, E. S. (2018). Accelerating research on treatment and services for transition age youth and adults on the autism spectrum. Autism: The International Journal of Research & Practice, 22(1), 2–5. https://doi.org/10.1177/1362361317738646

  • Bannerman, D. J., Sheldon, J. B., Sherman, J. A., & Harchik, A. (1990). Balancing the right to habilitation with the right to personal liberties: The rights of people with developmental disabilities to eat too many doughnuts and take a nap. Journal of Applied Behavior Analysis, 23(1), 79–89. https://doi.org/10.1901/jaba.1990.23-79

    Article  PubMed  PubMed Central  Google Scholar 

  • Behavior Analyst Certification Board. (n.d.). BACB certificant data. https://www.bacb.com/BACB-certificant-data

  • Behavior Analyst Certification Board. (2020). Ethics code for behavior analysts. https://bacb.com/wp-content/ethics-code-for-behavior-analysts/

  • Bellini, S., Peters, J. K., Benner, L., & Hopf, A. (2007). A meta-analysis of school-based social skills interventions for children with autism spectrum disorders. Remedial & Special Education, 28, 153–162. https://doi.org/10.1177/07419325070280030401

    Article  Google Scholar 

  • Bernstein, G. S. (1989). Social validity and the report of the ABA task force on right to effective treatment. The Behavior Analyst, 12(1), 97. https://doi.org/10.1007/BF03392484

    Article  PubMed  PubMed Central  Google Scholar 

  • Bishop-Fitzpatrick, L., Hong, J., Smith, L. E., Makuch, R. A., Greenberg, J. S., & Mailick, M. R. (2016). Characterizing objective quality of life and normative outcomes in adults with autism spectrum disorder: An exploratory latent class analysis. Journal of Autism & Developmental Disorders, 46(8), 2707–2719. https://doi.org/10.1007/s10803-016-2816-3

    Article  Google Scholar 

  • Blaxill, M., Rogers, T., & Nevison, C. (2021). Autism tsunami: The impact of rising prevalence on the societal cost of autism in the United States. Journal of Autism & Developmental Disorders 52, 2627–2643. https://doi.org/10.1007/s10803-021-05120-7

  • Bolte, S., & Poustka, F. (2002). The relation between general cognitive level and adaptive behavior domains in individuals with autism with and without co-morbid mental retardation. Child Psychiatry & Human Development, 33(2), 165–172. https://doi.org/10.1023/A:1020734325815

    Article  Google Scholar 

  • Bondy, A. (2014). The pyramid approach to education: A guide to functional ABA. Pyramid Educational Consultants.

  • Bottema-Beutel, K., Kapp, S. K., Lester, J. N., Sasson, N. J., & Hand, B. N. (2021). Avoiding ableist language: Suggestions for autism researchers. Autism in Adulthood. https://doi.org/10.1089/aut.2020.0014

    Article  PubMed  PubMed Central  Google Scholar 

  • Brown, L., Nietupski, J., & Hamre-Nietupski, S. (1976). Criterion of ultimate functioning. In M. A. Thomas (Ed.), Hey, don’t forget about me: Education’s investment in the severely, profoundly, and multiply handicapped (pp. 2–15). Council for Exceptional Children.

    Google Scholar 

  • Cappe, É., Poirier, N., Sankey, C., Belzil, A., & Dionne, C. (2018). Quality of life of French Canadian parents raising a child with autism spectrum disorder and effects of psychosocial factors. Quality of Life Research, 27(4), 955–967. https://doi.org/10.1007/s11136-017-1757-4

    Article  PubMed  Google Scholar 

  • Carr, E. G., Dunlap, G., Horner, R. H., Koegel, R. L., Turnbull, A. P., Sailor, W., Anderson, J. L., Albin, R. W., Koegel, L. K., & Fox, L. (2002). Positive behavior support: Evolution of an applied science. Journal of Positive Behavior Interventions, 4(1), 4–16. https://doi.org/10.1177/109830070200400102

    Article  Google Scholar 

  • Claes, C., Van Hove, G., Vandevelde, S., van Loon, J., & Schalock, R. L. (2010). Person-centered planning: Analysis of research and effectiveness. Intellectual & Developmental Disabilities, 48(6), 432–453. https://doi.org/10.1352/1934-9556-48.6.432

    Article  Google Scholar 

  • Clarke, E. B., McCauley, J. B., & Lord, C. (2021). Post-high school daily living skills in autism spectrum disorder. Journal of the American Academy of Child & Adolescent Psychiatry, 60(8), 978–985. https://doi.org/10.1016/j.jaac.2020.11.008

    Article  Google Scholar 

  • Common Core State Standards Initiative (CCSS). (2022). Common core state standards initiative preparing America’s students for college & career. http://www.corestandards.org

  • Courtade, G., Spooner, F., Browder, D., & Jimenez, B. (2012). Seven reasons to promote standards-based instruction for students with severe disabilities: A reply to Ayres, Lowrey, Douglas, & Sievers (2011). Education and Training in Autism and Developmental Disabilities, 47(1), 3–13. https://www.jstor.org/stable/23880557

  • Cowan, R. J., & Allen, K. D. (2007). Using naturalistic procedures to enhance learning in individuals with autism: A focus on generalized teaching within the school setting. Psychology in the Schools, 44(7), 701–715. https://doi.org/10.1002/pits.20259

    Article  Google Scholar 

  • Dell’Armo, K. A., & Tassé, M. J. (2019). The role of adaptive behavior and parent expectations in predicting post-school outcomes for young adults with intellectual disability. Journal of Autism Developmental Disorders, 49(4), 1638–1651. https://doi.org/10.1007/s10803-018-3857-6

    Article  PubMed  Google Scholar 

  • Developmental Disabilities Assistance and Bill of Rights Act of 2000, 106 U.S.C. § 1809 (2000). https://www.congress.gov/bill/106th-congress/senate-bill/1809

  • Duncan, A., Liddle, M., & Stark, L. J. (2021). Iterative development of a daily living skills intervention for adolescents with autism without an intellectual disability. Clinical Child & Family Psychology Review, 1–21. Advance online publication. https://doi.org/10.1007/s10567-021-00360-6

  • Eikeseth, S. (2009). Outcome of comprehensive psycho-educational interventions for young children with autism. Research in Developmental Disabilities, 30, 158–178. https://doi.org/10.1016/j.ridd.2008.02.003

    Article  PubMed  Google Scholar 

  • Eilenberg, J. S., Paff, M., Harrison, A. J., & Long, K. A. (2019). Disparities based on race, ethnicity, and socioeconomic status over the transition to adulthood among adolescents and young adults on the autism spectrum: A systematic review. Current Psychiatry Reports, 21(5), 32. https://doi.org/10.1007/s11920-019-1016-1

    Article  PubMed  Google Scholar 

  • Eldevik, S., Hastings, R. P., Hughes, J. C., Jahr, E., Eikeseth, S., & Cross, S. (2009). Meta-analysis of early intensive behavioral intervention for children with autism. Journal of Clinical Child & Adolescent Psychology, 38(3), 439–450. https://doi.org/10.1080/15374410902851739

    Article  Google Scholar 

  • Ennis-Cole, D., Durodoye, B. A., & Harris, H. L. (2013). The impact of culture on autism diagnosis and treatment: Considerations for counselors and other professionals. The Family Journal, 21(3), 279–287. https://doi.org/10.1177/1066480713476834

    Article  Google Scholar 

  • Esbensen, A. J., Bishop, S. L., Seltzer, M. M., Greenberg, J. S., & Taylor, J. L. (2010). Comparisons between individuals with autism spectrum disorders and individuals with Down syndrome in adulthood. American Journal on Intellectual & Developmental Disabilities, 115, 277–290. https://doi.org/10.1352/1944-7558-115.4.277

    Article  Google Scholar 

  • Farley, M., Cottle, K. J., Bilder, D., Viskochil, J., Coon, H., & McMahon, W. (2018). Mid-life social outcomes for a population-based sample of adults with ASD. Autism Research: Official Journal of the International Society for Autism Research, 11(1), 142–152. https://doi.org/10.1002/aur.1897

    Article  PubMed  Google Scholar 

  • Farley, M. A., McMahon, W. M., Fombonne, E., Jenson, W. R., Miller, J., Gardner, M., Block, H., Pingree, C. B., Ritvo, E. R., Ritvo, R. A., & Coon, H. (2009). Twenty-year outcome for individuals with autism and average or near-average cognitive abilities. Autism Research, 2(2), 109–118. https://doi.org/10.1002/aur.69

    Article  PubMed  Google Scholar 

  • Fawcett, S. B. (1991). Social validity: A note on methodology. Journal of Applied Behavior Analysis, 24(2), 235–239. https://doi.org/10.1901/jaba.1991.24-235

    Article  PubMed  PubMed Central  Google Scholar 

  • Federal Drug Administration (FDA). (2014). Premarket assessment of pediatric medical devices: Guidance for industry an FDA staff. https://www.fda.gov/media/73510/download

  • Fong, V. C., Gardiner, E., & Iarocci, G. (2020). Can a combination of mental health services and ADL therapies improve quality of life in families of children with autism spectrum disorder? Quality of Life Research, 29, 2161–2170. https://doi.org/10.1007/s11136-020-02440-6

  • Ford, A., Schnoor, R., Meyer, L., Davern, L., Black, J., & Dempsey, P. (2005). The Syracuse community-referenced curriculum guide. Brookes Publishing.

    Google Scholar 

  • Fuller, P. R. (1949). Operant conditioning of a vegetative human organism. American Journal of Psychology, 62, 587–590. https://doi.org/10.2307/1418565

    Article  PubMed  Google Scholar 

  • Georgiades, S., & Kasari, C. (2018). Reframing optimal outcomes in autism. JAMA Pediatrics, 172(8), 716–717. https://doi.org/10.1001/jamapediatrics.2018.1016

    Article  PubMed  Google Scholar 

  • Gerhardt, P. F. (2008, March 7). ABA and effective intervention for older learners with ASD: Transitioning to competent adulthood [PowerPoint Slides]. Texas Association for Behavior Analysis, Invited Workshop, Dallas, TX.

  • Gerhardt, P. F. (2019, March 22). ABA and older learners with autism: Applications to promote competence and quality of life. [PowerPoint Slides]. Hawaii Association for Behavior Analysis Annual Convention, Honolulu, HI.

  • Gerhardt, P. F., & Bahry, S. N. (2022). Neglected aspects of transition planning and implementation for autistic adolescents and young adults. In J. B. Leaf, J. H. Cihon, J. L. Ferguson, & P. F. Gerhardt (Eds.), Handbook of quality of life for individuals with autism spectrum disorder (pp. TBD). Springer.

  • Gerhardt, P. F., & Lainer, I. (2011). Addressing the needs of adolescents and adults with autism: A crisis on the horizon. Journal of Contemporary Psychotherapy, 41, 37–45. https://doi.org/10.1007/s10879-010-9160-2

    Article  Google Scholar 

  • Gerhardt, P. F., Zawacki, J., & Satriale, G. (2013). Adaptive behavior in adolescents and adults with autism spectrum disorders. In P. F. Gerhardt & D. Crimmins (Eds.), Social skill and adaptive behavior intervention with learners with autism (pp. 159–170). Brookes Publishing.

    Google Scholar 

  • Ghanouni, P., Quirke, S., Blok, J., & Casey, A. (2021). Independent living in adults with autism spectrum disorder: Stakeholders’ perspectives and experiences. Research in Developmental Disabilities, 119, Article 104085. https://doi.org/10.1016/j.ridd.2021.104085

  • Giardino, A. P. (2022). Unique needs of children must be considered in medical necessity decisions: AAP. American Academy of Pediatrics (AAP): AAP News. https://publications.aap.org/aapnews/news/21979

  • Gold, M. W. (1980). Marc Cold: “Did 1 say that?” Research Press.

    Google Scholar 

  • Green, C. W., & Reid, D. H. (1996). Defining, validating, and increasing indices of happiness among people with profonde multiple disabilities. Journal of Applied Behavior Analysis, 29(1), 67–78. https://doi.org/10.1901/jaba.1996.29-67

    Article  PubMed  PubMed Central  Google Scholar 

  • Green, G., Brennan, L. C., & Fein, D. (2002). Intensive behavioral treatment for a toddler at high risk for autism. Behavior Modification, 26, 69–102. https://doi.org/10.1177/0145445502026001005

    Article  PubMed  Google Scholar 

  • Gresham, F. M., & Lopez, M. F. (1996). Social validation: A unifying construct for school-based consultation research and practice. School Psychology Quarterly, 11, 204–227. https://doi.org/10.1037/h0088930

    Article  Google Scholar 

  • Hardin, A. P., Hackell, J. M., Committee on Practice and Ambulatory Medicine et al. (2017). Age limit of pediatrics. Pediatrics, 140(3), Article e20172151. https://doi.org/10.1542/peds.2017-2151

  • Haring, T. G. (1991). Social relationships. In L. H. Meyer, C. A. Peck, & L. Brown (Eds.), Critical issues in the lives of people with severe disabilities. Paul H. Brookes Publishing.

  • Haring, N. G., & Brown, L. J. (Eds.). (1976). Teaching the severely handicapped: Volume I. Grune & Stratton.

  • Haring, N. G., & Romer, L. T. (Eds.). (1995). Welcoming students who are deaf-blind into typical class-rooms: Facilitating school participation, learning, and friendships. Brookes Publishing.

    Google Scholar 

  • Heward, W. I. (2005). Exceptional children: An introduction to special education. Prentice Hall.

  • Hong, E. R., Ganz, J. B., Morin, K., Davis, J. L., Ninci, J., Neely, L., & Boles, M. B. (2017). Functional living skills and adolescents and adults with autism spectrum disorder: A meta-analysis. Education & Training in Autism & Developmental Disabilities, 52(3), 268–279. https://www.jstor.org/stable/26420399

  • Horner, R. H., & Sugai, G. (2015). School-wide PBIS: An example of applied behavior analysis implemented at a scale of social importance. Behavior Analysis in Practice, 8(1), 80–85. https://doi.org/10.1007/s40617-015-0045-4

    Article  PubMed  PubMed Central  Google Scholar 

  • Howlin, P. (2021). Adults with autism: Changes in understanding since DSM-111. Journal of Autism & Developmental Disorders, 51, 1–18. https://doi.org/10.1007/s10803-020-04847-z

    Article  Google Scholar 

  • Howlin, P., & Iliana, M. (2017). Autism spectrum disorder: Outcomes in adulthood. Current Opinion in Psychiatry, 30(2), 69–76. https://doi.org/10.1097/YCO.0000000000000308

    Article  PubMed  Google Scholar 

  • Individuals with Disabilities Education Act (IDEA), 20 U.S.C. § 1400 (2004). https://sites.ed.gov/idea/

  • Isaacs, W., Thomas, J., & Goldiamond, I. (1960). Application of operant conditioning to reinstate verbal behavior in psychotics. Journal of Speech & Hearing Disorders, 25, 8–12. https://doi.org/10.1044/jshd.2501.08

    Article  Google Scholar 

  • Ivy, J. W., & Schreck, K. A. (2016). The efficacy of ABA for individuals with autism across the lifespan. Current Developmental Disorders Reports, 3(1), 57–66. https://doi.org/10.1007/s40474-016-0070-1

    Article  Google Scholar 

  • Kanne, S. M., Gerber, A. J., Quirmbach, L. M., Sparrow, S. S., Cicchetti, D. V., & Saulnier, C. A. (2011). The role of adaptive behavior in autism spectrum disorders: Implications for functional outcome. Journal of Autism & Developmental Disorders, 41(8), 1007–1018. https://doi.org/10.1007/s10803-010-1126-4

    Article  Google Scholar 

  • Kazdin, A. E. (1980). Acceptability of alternative treatments for deviant child behavior. Journal of Applied Behavior Analysis, 13, 259–273. https://doi.org/10.1901/jaba.1980.13-259

    Article  PubMed  PubMed Central  Google Scholar 

  • Keyes, M., & Owens-Johnson, L. (2003). Developing person-centered IEPs. Intervention in School & Clinic, 38, 145–152. https://doi.org/10.1177/10534512030380030301

    Article  Google Scholar 

  • Kincaid, D., Dunlap, G., Kern, L., Lane, K. L., Bambara, L. M., Brown, F., Fox, L., & Knoster, T. P. (2016). Positive behavior support: A proposal for updating and refining the definition. Journal of Positive Behavior Interventions, 18(2), 69–73. https://doi.org/10.1177/1098300715604826

    Article  Google Scholar 

  • King, C., Merrick, H., & Couteur, A. L. (2020). How should we support young people with ASD and mental health problems as they navigate the transition to adult life including access to adult healthcare services. Epidemiology & Psychiatric Sciences, 29(90), 1–5. https://doi.org/10.1017/S2045796019000830

    Article  Google Scholar 

  • Kirby, A. V. (2016). Parent expectations mediate outcomes for young adults with autism spectrum disorder. Journal of Autism & Developmental Disorders, 46(5), 1643–1655. https://doi.org/10.1007/s10803-015-2691-3

    Article  Google Scholar 

  • Klin, A., Saulnier, C. A., Sparrow, S. S., Cicchetti, D. V., Volkmar, F. R., & Lord, C. (2007). Social and communication abilities and disabilities in higher functioning individuals with autism spectrum disorders: The Vineland and the ADOS. Journal of Autism & Developmental Disorders, 37(4), 748–759. https://doi.org/10.1007/s10803-006-0229-4

    Article  Google Scholar 

  • Kuo, A. A., Crapnell, T., Lau, L., Anderson, K. A., & Shattuck, P. (2018). Stakeholder perspectives on research and practice in autism and transition. Pediatrics, 141(Suppl. 4), S293–S299. https://doi.org/10.1542/peds.2016-4300F

    Article  PubMed  Google Scholar 

  • Lai, M. C., Kassee, C., Besney, S., Bonato, S., Hull, L., Mandy, W., Szatmari, P., & Ameis, S. H. (2019). Prevalence of co-occurring mental health diagnoses in the autism population: A systematic review and meta-analysis. The Lancet Psychiatry, 6(10), 819–829. https://doi.org/10.1016/S2215-0366(19)30289-5

    Article  PubMed  Google Scholar 

  • Lambert, J. M., Copeland, B. A., Karp, E. L., Finley, C. I., Houchins-Juarez, N. J., & Ledford, J. R. (2016). Chaining functional basketball sequences (with embedded conditional discriminations) in an adolescent with autism. Behavior Analysis in Practice, 9(3), 199–210. https://doi.org/10.1007/s40617-016-0125-0

    Article  PubMed  PubMed Central  Google Scholar 

  • Laxman, D. J., Taylor, J. L., DaWalt, L. S., Greenberg, J. S., & Mailick, M. R. (2019). Loss in services precedes high school exit for teens with autism spectrum disorder: A longitudinal study. Autism Research, 12(6), 911–921. https://doi.org/10.1002/aur.2113

    Article  PubMed  PubMed Central  Google Scholar 

  • Leaf, J. B., Cihon, J. H., Leaf, R., McEachin, J., & Taubman, M. (2016a). A progressive approach to discrete trial teaching: Some current guidelines. International Electronic Journal of Elementary Education, 9(2), 361–372.

    Google Scholar 

  • Leaf, J. B., Leaf, R., McEachin, J., Taubman, M., Ala’i-Rosales, S., Ross, R. K., Smith, T., & Weiss, M. J. (2016b). Applied behavior analysis is a science and, therefore, progressive. Journal of Autism & Developmental Disorders, 46, 720–731. https://doi.org/10.1007/s10803-015-2591-6

  • Leaf, R., Leaf, J. B., & McEachin, J. (2019). Clinical judgement. Different Roads.

  • Lin, L. Y. (2011). Factors associated with caregiving burden and maternal pessimism in mothers of adolescents with an autism spectrum disorder in Taiwan. Occupational Therapy International, 18(2), 96–105. https://doi.org/10.1002/oti.305

    Article  PubMed  Google Scholar 

  • Linstead, E., Dixon, D. R., Burns, C. O., French, R., Novack, M. N., & Granpeesheh, D. (2017). An evaluation of the effects of intensity and duration on outcomes across treatment domains for children with autism spectrum disorder. Translational Psychiatry, 7(9), e1234. https://doi.org/10.1038/tp.2017.207

    Article  PubMed  PubMed Central  Google Scholar 

  • Lord, C., McCauley, J. B., Pepa, L. A., Huerta, M., & Pickles, A. (2020). Work, living, and the pursuit of happiness: Vocational and psychosocial outcomes for young adults with autism. Autism: The International Journal of Research & Practice, 24(7), 1691–1703. https://doi.org/10.1177/1362361320919246

  • Lovaas, O. I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting & Clinical Psychology, 55(1), 3–9. https://doi.org/10.1037/0022-006X.55.1.3

    Article  Google Scholar 

  • Lowrey, K. A., Drasgow, E., Renzaglia, A., & Chezan, L. (2007). Impact of alternate assessment on curricula for students with severe disabilities: Purpose driven or process driven? Assessment for Effective Intervention, 32(4), 244–253. https://doi.org/10.1177/15345084070320040601

    Article  Google Scholar 

  • MacDuff, G. S., Krantz, P. J., & McClannahan, L. E. (1993). Teaching children with autism to use photographic activity schedules: Maintenance and generalization of complex response chains. Journal of Applied Behavior Analysis, 26(1), 89–97. https://doi.org/10.1901/jaba.1993.26-89

    Article  PubMed  PubMed Central  Google Scholar 

  • Marsack-Topolewski, C. N., Samuel, P. S., & Tarraf, W. (2021). Empirical evaluation of the association between daily living skills of adults with autism and parental caregiver burden. PLoS ONE, 16(1), e0244844. https://doi.org/10.1371/journal.pone.0244844

  • Marsack-Topolewski, C. N., & Weisz, A. N. (2020). Parents’ perceptions of access to services for their adult children diagnosed with autism spectrum disorder. Families in Society, 101(2), 190–204. https://doi.org/10.1177/1044389419881273

    Article  Google Scholar 

  • Martin, J. E., & Marshall, L. H. (1995). ChoiceMaker: A comprehensive self-determination transition program. Intervention in School and Clinic, 30(3), 147–156. https://doi.org/10.1177/105345129503000304

    Article  Google Scholar 

  • Mason, D., Capp, S. J., Stewart, G. R., Kempton, M. J., Glaser, K., Howlin, P., & Happé, F. (2021). A meta-analysis of outcome studies of autistic adults: Quantifying effect size, quality, and meta-regression. Journal of Autism & Developmental Disorders, 51(9), 3165–3179. https://doi.org/10.1007/s10803-020-04763-2

    Article  Google Scholar 

  • Matson, J. L., Hattier, M. A., & Belva, B. (2012). Treating adaptive living skills of persons with autism using applied behavior analysis: A review. Research in Autism Spectrum Disorders, 6(1), 271–276. https://doi.org/10.1016/j.rasd.2011.05.008

    Article  Google Scholar 

  • Matthews, N. L., Smith, C. J., Pollard, E., Ober-Reynolds, S., Kirwan, J., & Malligo, A. (2015). Adaptive functioning in autism spectrum disorder during the transition to adulthood. Journal of Autism & Developmental Disorders, 45(8), 2349–2360. https://doi.org/10.1007/s10803-015-2400-2

    Article  Google Scholar 

  • McGreevy, P., Fry, T., & Cornwall, C. (2014). Essential for living: A communication, behavior and functional skills curriculum, assessment and professional practitioner’s handbook for children and adults with moderate-to-severe disabilities. Patrick McGreevy. (Original work published 2012).

  • Meyer, L. H. (1994). Editor’s introduction: Understanding the impact of inclusion. Journal of the Association for Persons with Severe Handicaps, 19, 251–252.

    Article  Google Scholar 

  • Meyer, K., Sears, S., Putnam, R., Phelan, C., Burnett, A., Warden, S., & Simonsen, B. (2021). Supporting students with disabilities with positive behavioral interventions and supports in the classroom: Lessons learned from research and practice. Beyond Behavior, 30(3), 169–178. https://doi.org/10.1177/10742956211021801

    Article  Google Scholar 

  • Murphy D., Glaser, K., Hayward, H., Eklund, H., Cadman, T., Findon, J., Woodhouse, E., Ashwood, K., Beecham, J., Bolton, P., McEwen, F., Wilson, E., Ecker, C., Wong, I., Simonoff, E., Russell, A., McCarthy, J., Chaplin, E., Young, S., & Asherson, P. (2018). The economic cost of ASD and ADHD during the “transition.” In Crossing the divide: A longitudinal study of effective treatments for people with autism and attention deficit hyperactivity disorder across the lifespan. NIHR Journals Library. https://www.ncbi.nlm.nih.gov/books/NBK518643/

  • Neely, L. C., Ganz, J. B., Davis, J. L., Boles, M. B., Hong, E. R., Ninci, J., & Gilliland, W. D. (2016). Generalization and maintenance of functional living skills for individuals with autism spectrum disorder: A review and meta-analysis. Review Journal of Autism & Developmental Disorders, 3(1), 37–47. https://doi.org/10.1007/s40489-015-0064-7

    Article  Google Scholar 

  • Newman, L., Wagner, M., Cameto, R., Knokey, A., & Shaver, D. (2010). Comparisons across time of the outcomes of youth with disabilities up to 4 years after high school: A report of findings from the National Longitudinal Transition Study (NLTS) and the National Longitudinal Transition Study-2 (NLTS-2). SRI International.

  • O’Brien, J. (1987). A guide to life-style planning: Using the activities catalogue to integrate services and natural support systems. In G. T. Bellamy & B. A. Wilcox (Eds.), Comprehensive guide to the activities catalogue: An alternative curriculum for youth and adults with severe disabilities (pp. 175–189). Paul H. Brookes Publishing.

    Google Scholar 

  • O’Brien, C. L., & O’Brien, J. (2000). The origins of person-centered planning. Responsive Systems Associates.

  • Odom, S. L., Boyd, B. A., Hall, L. J., & Hume, K. (2010). Evaluation of comprehensive treatment models for individuals with autism spectrum disorders. Journal of Autism Developmental Disorders, 40, 425–436. https://doi.org/10.1007/s10803-009-0825-1

    Article  PubMed  Google Scholar 

  • Orsmond, G. I., Shattuck, P. T., Cooper, B. P., Sterzing, P. R., & Anderson, K. A. (2013). Social participation among young adults with an autism spectrum disorder. Journal of Autism & Developmental Disorders, 43, 2710–2719. https://doi.org/10.1007/s10803-013-1833-8

    Article  Google Scholar 

  • Partington, J. W. (2006). The assessment of basic language and learning skills: An assessment, curriculum guide, and skills tracking system for children with autism or other developmental disabilities: ABBLS®-R Protocol. Partington Behavior Analysts.

  • Partington, J. W., & Mueller, M. M. (2016). The assessment of functional living skills guide: Essential skills for independence at home, school, and in the community. Behavior Analysts, Inc. and Stimulus Publications.

  • Paul, R., Miles, S., Cicchetti, D., Sparrow, S., Klin, A., Volkmar, F., Coflin, M., & Booker, S. (2004). Adaptive behavior in autism and pervasive developmental disorder-not otherwise specified: Microanalysis of scores on the Vineland Adaptive Behavior Scales. Journal of Autism & Developmental Disorders, 27(6), 997–1006. https://doi.org/10.1023/b:jadd.0000022612.18116.46

    Article  Google Scholar 

  • Perske, R. (1972). The dignity of risk and the mentally retarded. Mental Retardation, 10(1), 1–6.

    Google Scholar 

  • Phillips, C. L., & Vollmer, T. R. (2012). Generalized instruction following with pictorial prompts. Journal of Applied Behavior Analysis, 45(1), 37–54. https://doi.org/10.1901/jaba.2012.45-37

    Article  PubMed  PubMed Central  Google Scholar 

  • Pickens, J. L., & Dymond, S. K. (2014). Special education directors’ views of community-based vocational instruction. Research & Practice for Persons with Severe Disabilities, 39(4), 290–304. https://doi.org/10.1177/1540796914566713

    Article  Google Scholar 

  • Pinkelman, S. E., Bundock, K, & Rolf, K. (2020). Supporting students with autism spectrum disorder in schools through multi-tiered systems of support. In McClain, M., Bundock, K., & Rolf, K. (Eds.), Interprofessional care coordination for pediatric autism spectrum disorder (pp. 137–152). Springer. https://doi.org/10.1007/978-3-030-46295-6_10

  • President’s Committee for People with Intellectual Disabilities (PCPID). (2017). Report to the President 2017, America’s direct support workforce crisis: Effects on people with intellectual disabilities, families, communities and the U.S. economyhttps://acl.gov/sites/default/files/programs/2018-02/2017%20PCPID%20Full%20Report_0.PDF

  • Putnam, R. F., & Kincaid, D. (2015). School-wide PBIS: Extending the impact of applied behavior analysis. Why is this important to behavior analysts?. Behavior Analysis in Practice, 8(1), 88–91. https://doi.org/10.1007/s40617-015-0055-2

  • Reid, D. H., Rosswurm, M., & Rotholz, D. A. (2017). No less worthy: Recommendations for behavior analysts treating adults with intellectual and developmental disabilities with dignity. Behavior Analysis in Practice, 11(1), 71–79. https://doi.org/10.1007/s40617-017-0203-y

    Article  PubMed  PubMed Central  Google Scholar 

  • Rispoli, M., Neely, L., Lang, R., & Ganz, J. (2011). Training paraprofessionals to implement interventions for people autism spectrum disorders: A systematic review. Developmental Neurorehabilitation, 14(6), 378–388. https://doi.org/10.3109/17518423.2011.620577

    Article  PubMed  Google Scholar 

  • Rogers, S. J., & Vismara, L. A. (2008). Evidence-based comprehensive treatments for early autism. Journal of Clinical Child & Adolescent. Psychology, 37, 8–38. https://doi.org/10.1080/15374410701817808

    Article  Google Scholar 

  • Roth, M. E., Gills, J. M., & DiGennaro Reed, F. D. (2014). A meta-analysis of behavioral interventions for adolescents and adults with autism spectrum disorders. Journal of Behavioral Education, 23, 258–286. https://doi.org/10.1007/s10864-013-9189-x

    Article  Google Scholar 

  • Roux, A. M., Shattuck, P., Rast, J. E., Rava, B. A., & Anderson, K. A. (2015). National autism indicators report: Transition into young adulthood. Drexel Autism Institute, Drexel University.

    Book  Google Scholar 

  • Ryndak, D. L., Morrison, A. P., & Sommerstein, L. (1999). Literacy before and after inclusion in general education settings: A case study. Journal of the Association for Persons with Severe Handicaps, 24, 5–22.

    Article  Google Scholar 

  • Schroeder, J. H., Cappadocia, M. C., Bebko, J. M., Pepler, D. J., & Weiss, J. A. (2014). Shedding light on a pervasive problem: A review of research on bullying experiences among children with autism spectrum disorders. Journal of Autism & Developmental Disorders, 44(7), 1520–1534. https://doi.org/10.1007/s10803-013-2011-8

    Article  Google Scholar 

  • Schwartz, I. S., & Baer, D. M. (1991). Social validity assessments: Is current practice state of the art? Journal of Applied Behavior Analysis, 24(2), 189–204. https://doi.org/10.1901/jaba.1991.24-189

    Article  PubMed  PubMed Central  Google Scholar 

  • Shabani, D. B., & Fisher, W. W. (2006). Stimulus fading and differential reinforcement for the treatment of needle phobia in a youth with autism. Journal of Applied Behavior Analysis, 39(4), 449–452. https://doi.org/10.1901/jaba.2006.30-05

    Article  PubMed  PubMed Central  Google Scholar 

  • Shattuck, P. T., Garfield, T., Roux, A. M., Rast, J. E., Anderson, K., Hassrick, E. M., & Kuo, A. (2020). Services for adults with autism spectrum disorder: A systems perspective. Current Psychiatry Reports, 22(3), 13. https://doi.org/10.1007/s11920-020-1136-7

    Article  PubMed  PubMed Central  Google Scholar 

  • Shattuck, P. T., Lau, L., Anderson, K. A., & Kuo, A. A. (2018). A national research agenda for the transition of youth with autism. Pediatrics, 141(4), 355–361. https://doi.org/10.1542/peds.2016-4300M

    Article  Google Scholar 

  • Shattuck, P. T., Narendorf, S. C., Cooper, B., Sterzing, P. R., Wagner, M., & Taylor, J. L. (2012). Postsecondary education and employment among youth with an autism spectrum disorder. Pediatrics, 129(6), 1042–1049. https://doi.org/10.1542/peds.2011-2864

    Article  PubMed  PubMed Central  Google Scholar 

  • Shyman, E. (2016). The reinforcement of ableism: Normality, the medical model of disability, and humanism in applied behavior analysis and ASD. Intellectual & Developmental Disabilities, 54(5), 366–376. https://doi.org/10.1352/1934-9556-54.5.366

    Article  Google Scholar 

  • Sigafoos, J., Green, V. A., Payne, D., O’Reilly, M. F., & Lancioni, G. E. (2009). A classroom-based antecedent intervention reduces obsessive-repetitive behavior in an adolescent with autism. Clinical Case Studies, 8(1), 3–13. https://doi.org/10.1177/1534650108327475

    Article  Google Scholar 

  • Skinner, B. F. (1996). The ethics of helping people. In M. A. Mattaini & B. A. Thyer (Eds.), Finding solutions to social problems: Behavioral strategies for change (pp. 61–72). (Reprinted from Criminal Law Bulletin, 11, 623–636) American Psychological Association. (Original work published 1975).

  • Slocum, T. A., Detrich, R., Wilczynski, S. M., Spencer, T. D., Lewis, T., & Wolfe, K. (2014). The evidence-based practice of applied behavior analysis. The Behavior Analyst, 37(1), 41–56. https://doi.org/10.1007/s40614-014-0005-2

    Article  PubMed  PubMed Central  Google Scholar 

  • Staats, A. W., & Butterfield, W. H. (1965). Treatment of nonreading in a culturally deprived juvenile delinquent: An application of reinforcement principles. Child Development, 36(4), 925–942. https://doi.org/10.2307/1126934

    Article  PubMed  Google Scholar 

  • Steege, M. W., Mace, F. C., Perry, L., & Longenecker, H. (2007). Applied behavior analysis: Beyond discrete trial teaching. Psychology in the Schools, 44(1), 91–99. https://doi.org/10.1002/pits.20208

    Article  Google Scholar 

  • Steinhausen, H. C., Mohr Jensen, C., & Lauritsen, M. B. (2016). A systematic review and meta-analysis of the long-term overall outcome of autism spectrum disorders in adolescence and adulthood. Acta Psychiatrica Scandinavica, 133(6), 445–452. https://doi.org/10.1111/acps.12559

    Article  PubMed  Google Scholar 

  • Stokes, T. F., & Baer, D. M. (1977). An implicit technology of generalization. Journal of Applied Behavior Analysis, 10(2), 349–367. https://doi.org/10.1901/jaba.1977.10-349

    Article  PubMed  PubMed Central  Google Scholar 

  • Sundburg, M. L. (2014). VB-MAPP: Verbal behavior milestones assessment and placement program (2nd ed.). AVB Press.

  • Szatmari, P., Bryson, S. E., Boyle, M. H., Streiner, D. L., & Duku, E. (2003). Predictors of outcome among high functioning children with autism and Asperger syndrome. Journal of Child Psychology & Psychiatry, 44(4), 520–528. https://doi.org/10.1111/1469-7610.00141

    Article  Google Scholar 

  • The Rehabilitation Act of 1973, 29 U.S.C. § 701. (2010).

  • Tomanik, S. S., Pearson, D. A., Loveland, K. A., Lane, D. M., & Shaw, J. B. (2007). Improving the reliability of autism diagnoses: Examining the utility of adaptive behavior. Journal of Autism & Developmental Disorders, 37(5), 921–928. https://doi.org/10.1007/s10803-006-0227-6

    Article  Google Scholar 

  • U.S. Department of Health & Human Services. (1999). Mental health: A report of the surgeon general. Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, National Institutes of Health, National Institute of Mental Health. https://lccn.loc.gov/2002495357

  • Van Houten, R., Axelrod, S., Bailey, J. S., Favell, J. E., Foxx, R. M., Iwata, B. A., & Lovaas, O. I. (1988). The right to effective behavioral treatment. Journal of Applied Behavior Analysis, 21(4), 381–384. https://doi.org/10.1901/jaba.1988.21-381

    Article  PubMed  PubMed Central  Google Scholar 

  • Van Laarhoven, T., Kraus, E., Karpman, K., Nizzi, R., & Valentino, J. (2010). A comparison of picture and video prompts to teach daily living skills to individuals with autism. Focus on Autism & Other Developmental Disabilities, 25(4), 195–208. https://doi.org/10.1177/1088357610380412

    Article  Google Scholar 

  • Vohra, R., Madhavan, S., Sambamoorthi, U., & St. Peter, C. (2014). Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions. Autism, 18(7), 815–826. https://doi.org/10.1177/1362361313512902

  • Walker, A. R., Uphold, N. M., Richter, S., & Test, D. W. (2010). Review of the literature on community-based instruction across grade levels. Education and Training in Autism & Developmental Disabilities, 45(2), 242–267. https://www.jstor.org/stable/23879810

  • Ward, M. J. (2005). An historical perspective of self-determination in special education: Accomplishments and challenges. Research & Practice for Persons with Severe Disabilities, 30(3), 108–112. https://doi.org/10.2511/rpsd.30.3.108

    Article  Google Scholar 

  • Wehman, P., & Kregel, J. (Eds.). (2020). Functional curriculum for elementary and secondary students with special needs (4th ed.). Pro-ed.

  • Wehmeyer, M. L. (1998). Self-determination and individuals with significant disabilities: Examining meanings and misinterpretations. Journal of the Association for Persons with Severe Handicaps, 23(1), 5–16. https://doi.org/10.2511/rpsd.23.1.5

    Article  Google Scholar 

  • Wehmeyer, M. L., & Schalock, R. L. (2001). Self-determination and quality of life: Implications for special education services and supports. Focus on Exceptional Children, 33(8), 1.

    Google Scholar 

  • Wehmeyer, M., & Schwartz, M. (1997). Self-determination and positive adult outcomes: A follow-up study of youth with mental retardation or learning disabilities. Exceptional Children, 63(2), 245–255. https://doi.org/10.1177/001440299706300207

    Article  Google Scholar 

  • Winett, R. A., & Winkler, R. C. (1972). Current behavior modification in the classroom: Be still, be quiet, be docile. Journal of Applied Behavior Analysis, 5(4), 499–504. https://doi.org/10.1901/jaba.1972.5-499

    Article  PubMed  PubMed Central  Google Scholar 

  • Wolf, M. M. (1978). Social validity: The case for subjective measurement or how applied behavior analysis is finding its heart. Journal of Applied Behavior Analysis, 11(2), 203–214. https://doi.org/10.1901/jaba.1978.11-203

    Article  PubMed  PubMed Central  Google Scholar 

  • Wolf, M., Risley, T., & Mees, H. (1963). Application of operant conditioning procedures to the behaviour problems of an autistic child. Behaviour Research & Therapy, 1(2–4), 305–312. https://doi.org/10.1016/0005-7967(63)90045-7

    Article  Google Scholar 

  • Wong, C., Odom, S. L., Hume, K. A., Cox, A. W., Fettig, A., Kucharczyk, S., Brock, M. E., Plavnick, J. B., Fleury, V. P., & Schultz, T. R. (2015). Evidence-based practices for children, youth, and young adults with autism spectrum disorder: A comprehensive review. Journal of Autism & Developmental Disorders, 45(7), 1951–1966. https://doi.org/10.1007/s10803-014-2351-z

    Article  Google Scholar 

  • Xu, J., Murphy, S. L, Kochanek, K. D., & Arias, E. (2020). Mortality in the United States, 2018. NCHS Data Brief, no 355. National Center for Health Statistics. 2020. https://www.cdc.gov/nchs/products/databriefs/db355.htm

  • Yeo, K. J. & Teng, K. Y. (2015). Social skills deficits in autism: A study among students with autism spectrum disorder in inclusive classrooms. Universal Journal of Educational Research 3(12), 1001–1007. https://doi.org/10.13189/ujer.2015.031208

  • Zerbo, O., Qian, Y., Ray, T., Sidney, S., Rich, S., Massolo, M., & Croen, L. A. (2019). Health care service utilization and cost among adults with autism spectrum disorders in a U.S. integrated health care system. Autism in Adulthood, 1(1), 27–36. https://doi.org/10.1089/aut.2018.0004

  • Zimmerman, E. H., & Zimmerman, J. (1962). The alteration of behavior in a special classroom situation. Journal of the Experimental Analysis of Behavior, 5(1), 59–60. https://doi.org/10.1901/jeab.1962.5-59

    Article  PubMed  PubMed Central  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Contributions

The first draft of the manuscript was written by Shanna Bahry and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Shanna Bahry.

Ethics declarations

Conflicts of Interest/Competing Interests

The authors have no conflicts of interest to declare that are relevant to the content of this article.

Additional declarations related to ethics/consent are not applicable, because this article did not involve the use of human and/or animal participants.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Bahry, S., Gerhardt, P.F., Weiss, M.J. et al. The Ethics of Actually Helping People: Targeting Skill Acquisition Goals That Promote Meaningful Outcomes for Individuals with Autism Spectrum Disorder. Behav Analysis Practice 16, 672–695 (2023). https://doi.org/10.1007/s40617-022-00757-x

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s40617-022-00757-x

Keywords

Navigation