Episode Four: Siblings as Autism Caregivers - Interview with Alex

Episode Six: Interview with Dr. Kerry Magro, Autism Author & Advocate

Send us Fan Mail [https://www.buzzsprout.com/2567486/fan_mail/new] Autism Support Centers: Where You Can Go For Help! The following are Autism Support Centers in Massachusetts: Central/West Region: www.autismresourcecentral.org HMEA's (Horace Mann Educational Associates) Autism Resource Central, 712 Plantation Street, Worcester, MA 01605 Phone 508-835-4278 This agency services about 4,000 families, and they are affiliated with Advocates, which is a large social service agency in Massachusetts. Ask about family support services, residential options for shared living, day programs Many of these services are based upon eligibility and the level of support needed. West: Pathlight Autism Connections, 42 Russell Street, Hadley, MA 01035; also offices in Northampton and Pittsfield. Phone number: 413-585-8010 Check out the website: https://autismconnectionsma.org/ [https://autismconnectionsma.org/] Middlesex West Area: Vinfen/Autism Support Center, 1208A VFW Parkway, Suite 201, W. Roxbury, MA 02333. Phone: 617-206-5902 Check out the Website: https://vinfen.org/services/asc/ [https://vinfen.org/services/asc/] Greater Boston Area: Charles River West Region: Lifeworks/Autism Support Center, 789 Clapboardtree St, Westwood, MA 02090, Phone 781-762-4001 Website: http://www.arcsouthnorfolk.org/family-autism-center.html [http://www.arcsouthnorfolk.org/family-autism-center.html] Northeast Region - Danvers Northeast Arc/ The Autism Support Center, 100 Independence Way, Suite D3, Danvers, MA 01923. Phone: 978-777-9135 Check out the Website: https://ne-arc.org/services/autism-and-specialty-aba-services/autism-support-center [https://ne-arc.org/services/autism-and-specialty-aba-services/autism-support-center] Research Discussed in this Episode: Gendered Caregiving: Dembosky, J. W., Heckert, D. A., Boser, S., & Migyanka, J. M. (2024). Shouldering the burden: Intensive mothering and autism. Family Relations, 73(2), 807–825. https://doi.org/10.1111/fare.12943 [https://doi.org/10.1111/fare.12943]  Dudley, K. M., Klinger, M. R., Meyer, A., Powell, P., & Klinger, L. G. (2018). Understanding service usage and needs for adults with ASD: The importance of living situation. Journal of Autism and Developmental Disorders, 49(2), 556–568. https://doi.org/10.1007/s10803-018-3733-4 [https://doi.org/10.1007/s10803-018-3733-4]  Hays, S. (1996). The cultural contradictions of motherhood. Yale University Press.  Marsack, C. N., & Perry, T. E. (2018). Informal support, health, and burden among parents of adult children with autism. The Gerontologist, 59(6), 1112–1121. https://doi.org/10.1093/geront/gny082 [https://doi.org/10.1093/geront/gny082]  Tronto, J. C. (1993). Moral boundaries: A political argument for an ethic of care. Routledge. ([Missing authors], n.d., p. 37) Wilde, A., & Fish, R. (2024). Gender, feminism, and the project of critical disability studies (cds). Disability & Society, 40(3), 533–554. https://doi.org/10.1080/09687599.2023.2298774 [https://doi.org/10.1080/09687599.2023.2298774] Flourishing: Resource Directory Services, benefits & navigation tools for autistic individuals across the lifespan  To access the links to this page, please hold the Ctrl key and, with your mouse, select the link. This will bring you to the pages National Databases & Directories Autism Speaks Resource Guide [https://www.autismspeaks.org/resource-guide] Searchable nationwide directory of diagnostic providers, therapists, support groups, and housing. Filter by zip

Episode Five: Interview with Dr. Dannette Taylor, IEP Advocate and Consultant

Send us Fan Mail [https://www.buzzsprout.com/2567486/fan_mail/new] Episode 5 focuses on the transition cliff from K-12 settings and covers future planning, ABLE accounts, and, in Georgia, the Now and Comp Waiver programs. Episode 5 will feature a guest expert, special-needs advocate Dr. Dannette Taylor, who is also a caregiver to an autistic adult. The episode addressed the service cliff and the gradual loss of services prior to transitioning from high school. We discussed the diversity of experiences with the service cliff, the inequitable services available, and the services that may not be available across the various counties in Georgia. Families do need to advocate early, and providers need to understand the lived experience and impact on maternal caregivers.  Learn more about Dr. Taylor's work at drdannettetaylor.com  https://drdannettetaylor.com/ References Brewer, A. (2018). We were on our own: Mothers' experiences navigating the fragmented system of professional care for autism. Social Science & Medicine, 215, 61-68. https://doi.org/10.1016/j.socscimed.2018.08.039 Crenshaw, K. (1989). Demarginalizing the intersection of race and sex: A Black feminist critique of antidiscrimination doctrine, feminist theory, and antiracist politics. University of Chicago Legal Forum, 1989(1), 8. http://chicagounbound.uchicago.edu/uclf/vol1989/iss1/8 Dembosky, J. W., Heckert, D., Boser, S., & Migyanka, J. M. (2023). Shouldering the burden: Intensive mothering and autism. Family Relations, 73(2), 807-825. https://doi.org/10.1080/10548408.2023.2170544 Dyer, J. T., & Gushwa, M. (2024). DEIPAR deeper: A curricular social justice framework and culturally responsive evaluative tool. In J. T. Dyer & K. Flores-Carter (Eds.), Infusing social justice into social science practice (pp.54-65). Kendall Hunt Publishers. Gowen, E., Taylor, R., Bleazard, T., Greenstein, A., Baimbridge, P., & Poole, D. (2020). Guidelines for conducting research studies with the autism community. Autism Policy Practice, 2(1), 29-45.  Ishler, K. J., Biegel, D. E., Wang, F., Olgac, T., Lytle, S., Miner, S., Edguer, M., & Kaplan, R. (2022). Service use among transition-age youth with autism spectrum disorder. Journal of Autism and Developmental Disorders, 52(3), 1051–1065. https://doi.org/10.1007/s10803-021-04999-6 [https://doi.org/10.1007/s10803-021-04999-6] Laxman, D. J., Taylor, J.L., DaWalt, L. S., Greenberger, J. S., Mailick, M. R. (2019). Loss of 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 Marsack, C. N., & Perry, M. J. (2018). The service cliff for young adults with autism: Parent perspectives on the transition to adulthood. Journal of Developmental Disabilities, 24(1), 78-90. Seligman, M. E. (2011). Flourish: A visionary new understanding of happiness and well-being. Simon & Schuster Audio. Shattuck, P. T., Garfield, T., Roux, A. M., Rast, J. E., Anderson, K., Hassrick, E., & Kuo, A. (2020). Services for adults with autism spectrum disorder: A systems perspective. Current Psychiatry Reports, 22(3). https://doi.org/10.1007/s11920-020-1136-7 Flourishing: Resource Directory Services, benefits & navigation tools for autistic individuals across the lifespan  To access the links to this page, please hold the Ctrl key and, with your mouse, select the link. This will bring you to the pages National Databases & Directories Autism Speaks Resource Guide [https://www.autismspeaks.org/resource-guide] Searchable nationwide directory of diagnostic providers, therapists, support groups, and housing. Filter by zip code, age, and service type. All a

Episode Two: Step-By-Step Guide to Applying for Adult Services, and Gendered Care Continued

Send us Fan Mail [https://www.buzzsprout.com/2567486/fan_mail/new] Autism Support Centers: Where You Can Go For Help! The following are Autism Support Centers in Massachusetts: Central/West Region: www.autismresourcecentral.org HMEA's (Horace Mann Educational Associates) Autism Resource Central, 712 Plantation Street, Worcester, MA 01605 Phone 508-835-4278 This agency services about 4,000 families, and they are affiliated with Advocates, which is a large social service agency in Massachusetts. Ask about family support services, residential options for shared living, day programs Many of these services are based upon eligibility and the level of support needed. West: Pathlight Autism Connections, 42 Russell Street, Hadley, MA 01035; also offices in Northampton and Pittsfield. Phone number: 413-585-8010 Check out the website: https://autismconnectionsma.org/ [https://autismconnectionsma.org/] Middlesex West Area: Vinfen/Autism Support Center, 1208A VFW Parkway, Suite 201, W. Roxbury, MA 02333. Phone: 617-206-5902 Check out the Website: https://vinfen.org/services/asc/ [https://vinfen.org/services/asc/] Greater Boston Area: Charles River West Region: Lifeworks/Autism Support Center, 789 Clapboardtree St, Westwood, MA 02090, Phone 781-762-4001 Website: http://www.arcsouthnorfolk.org/family-autism-center.html [http://www.arcsouthnorfolk.org/family-autism-center.html] Northeast Region - Danvers Northeast Arc/ The Autism Support Center, 100 Independence Way, Suite D3, Danvers, MA 01923. Phone: 978-777-9135 Check out the Website: https://ne-arc.org/services/autism-and-specialty-aba-services/autism-support-center [https://ne-arc.org/services/autism-and-specialty-aba-services/autism-support-center] Research Discussed in this Episode: Gendered Caregiving: Dembosky, J. W., Heckert, D. A., Boser, S., & Migyanka, J. M. (2024). Shouldering the burden: Intensive mothering and autism. Family Relations, 73(2), 807–825. https://doi.org/10.1111/fare.12943 [https://doi.org/10.1111/fare.12943]  Dudley, K. M., Klinger, M. R., Meyer, A., Powell, P., & Klinger, L. G. (2018). Understanding service usage and needs for adults with ASD: The importance of living situation. Journal of Autism and Developmental Disorders, 49(2), 556–568. https://doi.org/10.1007/s10803-018-3733-4 [https://doi.org/10.1007/s10803-018-3733-4]  Hays, S. (1996). The cultural contradictions of motherhood. Yale University Press.  Marsack, C. N., & Perry, T. E. (2018). Informal support, health, and burden among parents of adult children with autism. The Gerontologist, 59(6), 1112–1121. https://doi.org/10.1093/geront/gny082 [https://doi.org/10.1093/geront/gny082]  Tronto, J. C. (1993). Moral boundaries: A political argument for an ethic of care. Routledge. ([Missing authors], n.d., p. 37) Wilde, A., & Fish, R. (2024). Gender, feminism, and the project of critical disability studies (cds). Disability & Society, 40(3), 533–554. https://doi.org/10.1080/09687599.2023.2298774 [https://doi.org/10.1080/09687599.2023.2298774] Flourishing: Resource Directory Services, benefits & navigation tools for autistic individuals across the lifespan  To access the links to this page, please hold the Ctrl key and, with your mouse, select the link. This will bring you to the pages National Databases & Directories Autism Speaks Resource Guide [https://www.autismspeaks.org/resource-guide] Searchable nationwide directory of diagnostic providers, therapists, support groups, and hou

Episode Three: Early Pioneers, Vocational Rehabilitation, and Skill Development

Send us Fan Mail [https://www.buzzsprout.com/2567486/fan_mail/new] Episode 3 will cover a deeper dive into autism caregiver pioneers who advocated for vocational rehabilitation supports over 100 years ago. The episode will examine some first responder programs, and highlight the importance of the work of Dr. Sukariva, Dr. Kanner, and others.  This episode, we will review Mass Ability Program and describe how to access this support.   Historical Figures & Autism History Anderson, K. A., Roux, A. M., Shattuck, P. T., Rast, J. E., & Rava, J. A. (2024). Pre-employment transition services and vocational rehabilitation for autistic youth. Drexel University, A.J. Drexel Autism Institute. Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2(3), 217–250. Pozzi, M., Carnovale, C., Mazhar, F., Gentili, M., Radice, S., & Clementi, E. (2024). Grunya Sukhareva: A forgotten pioneer in autism research. European Psychiatry, 67(1), Article e12. https://doi.org/10.1192/j.eurpsy.2024.3 [https://doi.org/10.1192/j.eurpsy.2024.3] Sher, D., & Gibson, J. (2021). Pioneering, prodigious and perspicacious: Grunya Efimovna Sukhareva's life and contribution to conceptualising autism and childhood psychopathology. European Psychiatry, 64(1), Article e16. https://doi.org/10.1192/j.eurpsy.2021.2214 [https://doi.org/10.1192/j.eurpsy.2021.2214] Sheffer, E. (2018). Asperger's children: The origins of autism in Nazi Germany. W. W. Norton & Company. Maternal Caregivers & Pioneer Figures Marsack-Topolewski, C. N., & Perry, T. E. (2018). Parenting adult children with autism: Caregiver perspectives and service needs. Intellectual and Developmental Disabilities, 56(5), 318–331. https://doi.org/10.1352/1934-9556-56.5.318 [https://doi.org/10.1352/1934-9556-56.5.318] Park, C. C. (1967). The siege: The first eight years of an autistic child. Little, Brown. Park, C. C. (2001). Exiting nirvana: A daughter's life with autism. Little, Brown. Vicedo, M. (2021). Intelligent love: The story of Clara Park, her autistic daughter, and the myth of the refrigerator mother. Beacon Press.  Vocational Rehabilitation & Employment Davies, J., Romualdez, A., Pellicano, E., & Remington, A. (2024). Career progression for autistic people: A scoping review. Autism, 28(11), 2690–2706. https://doi.org/10.1177/13623613241236110 [https://doi.org/10.1177/13623613241236110] Ishler, K. J., Berg, K. A., Olgac, T., Obeid, R., & Biegel, D. E. (2023). Barriers to service and unmet need among autistic adolescents and young adults. Autism, 26(2), 375–387. https://doi.org/10.1177/13623613211035617 [https://doi.org/10.1177/13623613211035617] Roux, A. M., Shattuck, P. T., Rast, J. E., Rava, J. A., & Anderson, K. A. (2015). National autism indicators report: Transition into young adulthood. Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University. Taylor, J. L., & Seltzer, M. M. (2011). Employment and post-secondary educational activities for young adults with autism spectrum disorders during the transition to adulthood. Journal of Autism and Developmental Disorders, 41(5), 566–574. Healthcare, Ableism & Equity Flanagan, T., Carter, E. W., & Hall, L. J. (2024). Racially and ethnically diverse families navigating autism services: Intersectional barriers and culturally responsive approaches. Journal of Autism and Developmental Disorders, 54(3), 980–995. https://doi.org/10.1007/s10803-023-05940-7 [https://doi.org/10.1007/s10803-023-05940-7] Pellicano, E., Dinsmore, A., & Charman, T. (2022). Views on researcher–community engagement in autism research in the United Kingdom: A m

Episode Four: Siblings as Autism Caregivers - Interview with Alex

Send us Fan Mail [https://www.buzzsprout.com/2567486/fan_mail/new] In this episode, two siblings from different parts of the world discuss the psychosocial issues of caregiving for a sibling. Alex is the guest today. We will examine the need to have open discussions with family members regarding long-term care planning and the importance of the role siblings hold in the safe space they may provide their autistic adult sibling. Resources in Canada that were discussed in this episode Centre de readaptation de l'Quest de Montreal (CROM)—Center for rehabilitation in West Island Montreal, Quebec—is an organization that provides services and activities, housing, and support for autistic adults over the age of 18. Address: 8000, rue Notre-Dame, Montreal (Lachine), QC H8R 1H2 514-363-3025 Resources in Massachusetts Discussed in this episode Department of Developmental Disabilities 617-727-5608; Videophone (VP) (857) 366-4179 https://www.mass.gov/orgs/department-of-developmental-services Social Security Insurance - 1-800-772-1213 https://www.ssa.gov/ssi Social Security Disability Insurance 1-800-772-1213 https://www.ssa.gov/benefits/disability/qualify.html Advocates, Inc. 508- 628-6300 Other Resources Autism Self Advocacy Network (ASAN): https://autisticadvocacy.org/ [https://autisticadvocacy.org/] Drexel Autism Institute (A.J. Drexel Autism Institute): https://drexel.edu/autisminstitute/ [https://drexel.edu/autisminstitute/] Department of Developmental Services (DDS) Adult Application (Massachusetts):   https://www.mass.gov/lists/dds-eligibility-forms [https://www.mass.gov/lists/dds-eligibility-forms] Department of Developmental Services (DDS) Adult Autism Resource Guide (Massachusetts): This is the link to the resource guide we discussed in our episode https://static1.squarespace.com/static/518bb7cde4b0d1e7bd9c37b5/t/5c58694253450a702c533881/1549297988292/DDS+NE+Region_2019+Adult+Autism+Resource+Guide_Final_020419.pdf [https://static1.squarespace.com/static/518bb7cde4b0d1e7bd9c37b5/t/5c58694253450a702c533881/1549297988292/DDS+NE+Region_2019+Adult+Autism+Resource+Guide_Final_020419.pdf] Resources to Help with Services Navigation for Every State Thank you for tuning into Flourishing: Caregiving Autistic Adults Podcast series. Please take a moment to review the attached resources that may assist you in navigating your caregiving responsibilities beyond age 22.  The Association for Autism and Neurodiversity (AANE) is located in Massachusetts; however, they offer their support nationally, to every state. The organization understands the caregiving journey, and many are caregivers themselves. Here are Some AANE Programs That Pertain to The Service Cliff Benefit Navigation and Guidance: AANE is aware of the supports and benefits by each state and can provide you with this information. They also offer a free webinar on finding public benefits for autistic adults and can tailor the information to your specific needs. Support Groups and Coaching: AANE offers support groups and individualized help for the specific issues you are facing. Contact Information: AANE: www.aane.org 85 Main Street, Suite 3, Watertown, MA 02472 Research Articles on Sibling Caregiving and Other Articles Dyer, J. T., & Gushwa, M. (Eds.). (2024). DEIPAR Deeper: A curricular social justice framework and culturally responsive evaluative tool. In J. Dyer & K. Flores-Carter (Eds.), Infusing social justice into social science practice (pp. 53-65). Kendall Hunt Publishers. Kendall Hunt. Flourishing: Resource Directory Services, benefits & navigation tools for autistic individuals across the lifespan  To ac