By Kat Milberger, LCSW
Many professionals who work with transition-aged young adults understand the joys and challenges that young people on the autism spectrum and their families face as and they wrap up high school and prepare for the open-ended expanse of adulthood. In this transition phase, it is critical for human service professionals to engage with families, to understand the complexities of this time for all members, and to provide guidance and support in a flexible but structured way.
A 2019 qualitative longitudinal study about the experiences of families of young adults with ASD discussed some key joys and challenges during transition. Families reflected on their child “having come a long way since their childhood” and growing to accept their child for who they are (Cribb et al., 2019, p. 1768). A 2015 study of parental quality of life found that “parents of transition-age youth and young adults with disabilities were generally satisfied with their family quality of life” (Boehm et al., 2015, p. 405).
Researchers also discussed the challenges of getting the “balance” right. One parent said, “It’s a very fine line. We can’t make him do stuff; he’s an adult. But it’s also not OK to just sit at home all day playing on the PlayStation. That’s not part of being in the adult world” (Cribb et al., 2019, p. 1775). A 2018 literature review of 17 qualitative studies suggested that many parents have “difficulty navigating their role in their children’s transition” (Anderson et al., 2018, p. S324). Young adults may have a clear idea of what they’d like to do after high school, but many look at the future and see only the unknown which causes anxiety. Young adults with ASD may find this lack of a clear path particularly uncomfortable, which can lead to leaning on the comforts and sameness of living at home and doing things that make them feel good. Parents often need the support of outside professionals to know when and how to nudge their child towards new challenges.
Contextualizing a Family’s Experience
Part of the professional’s role in supporting families is to help normalize their experience. As a social worker, I draw upon social work models and theories to help families contextualize what they are going through. For example, many parents go through their own identity struggle when their child becomes more independent. Erikson’s theory of Psychosocial Development labels this stage as “Generativity versus Stagnation.” If a parent’s role was, for so many years, to be a caregiver, support, and advocate for their child, that parent may have to restructure their identity now that caregiving is not one of their primary jobs. As professionals, we can support parents in processing this change, building community, and discovering their restructured roles and purposes.
Another theory that I often draw upon to normalize a family’s experience is systems theory. I conceptualize the young adult and their family as a “system.” They have a specific way of interacting with one another and with the outside world. An easy way to think about this is by imagining the family as a solar system. There is an “equilibrium” that allows the planets to orbit the sun, and moons to orbit the planets. If left alone, it would continue to function as it functions. However, if a new force or “input” is added to the system, or something is taken away from the system, it impacts the way that all of the planets, sun, and moons interact with one another. This leads to a period of instability and change that can feel uncomfortable. However, this change leads to a new equilibrium. All of this is to say that any change – such as ending high school, starting college, working with a social worker, moving out, starting ABA services, etc. – leads to a period of instability. Normalizing this can help the family understand what they are going through and roll with the changes, knowing that stability and equilibrium will follow.
As professionals working with families, trust is key to forming a collaborative team. Families often play a huge role in a young adult’s life. Therefore, we should see families as sources of information, support, opportunity, and guidance. Researchers have noted that families of transitioning young adults with ASD often feel a responsibility to educate support professionals about ASD (Anderson et al., 2018, p. S324). We should assume that not all experiences that families have had with support professionals have been easy, positive, or collaborative. We have to demonstrate that we see family members as experts on their child, though we know we will be seeing their child from a different vantage point than they are.
How do we do this? We stay focused on the strengths of the family and structure support so that collaboration is central. This requires planning out how to involve the family in the support process. This also means that we have to be self-aware about our own emotions. Sometimes family members are overwhelmed, fearful, anxious, or in fight/flight/freeze; this can manifest in many ways, some of which may feel frustrating or upsetting to the professional. The professional must always remember that it is not personal. The family is doing the best they can with the tools they have.
It is also helpful to remember that what a family member says is only one layer of what they mean. As professionals, we should try to clue into metacommunication. This is the meaning underneath what the family member is saying. For example, if a family member says, “If you can’t handle my child, then I will just pull them from your program,” what they might actually mean is, “I am afraid that no program will be able to handle my child, and then they will not progress and become independent.” If we respond to their words only, we might address their actions of wanting to end services, and we may sound defensive in the process. If we respond to their fear, the response will look much different, and will likely build trust. The best way to respond to someone’s fear is to paraphrase what they said to demonstrate that you are really listening to them.
A 2018 qualitative study of parents of transitioning young adults found that families were “wanting to collaborate with knowledgeable professionals, but also suggested a preference for learning from other families” (Francis et al., 2018, p. 292). Some of the best resources to families are other families who are going through or have been through this transition phase. As professionals, it is important to have information about local support groups, social groups, advocacy organizations, and community events. Many families may be hesitant to attend such groups at first, so linking a family with another family in an informal way can also be impactful.
Creating a Structured Approach
Finally, as professionals working with transition-aged young adults, it is important that we give families an idea of what to expect from our services. This means that we have a structured plan – though one that is flexible to each family’s needs – so that some of the anxiety of seeking services is eased. The more in control that families feel, the more they will be able to contribute to the transition process. Some examples of how to structure services are:
- Built-in structures to ensure client self-determination
- Program overviews, flowcharts, transition plans, timelines
- Clear meeting schedules
- Measures of growth
- Expectations about the professional’s role and the family’s role in the transition process
Everyone is interdependent. As Geller & Greenberg noted in their 2009 article, “In the long run, it is the judicious use of that dependence and its gradual transfer to other support systems that result in the greatest success in independent functioning” (Geller & Greenberg, 2009, p. 95). It is our job, as professionals, to support families in this long, challenging, and rewarding process of transitioning their child into adult life. We do this as a team, with trust, and with the big picture always in mind.
Kat Milberger, MSW, LCSW
Kat Milberger earned her Master’s in Social Work at Virginia Commonwealth University in 2016 and became Licensed in Clinical Social Work in May of 2019. She has worked with adolescents and young adults on the autism spectrum in the Richmond area since 2012 and has served in various roles in school and community-based settings. Kat received a certificate from the University Counseling Services Training Program at VCU and went on to provide therapy to young adults on the spectrum between 2016 and 2018 at UMFS. She is trained in Collaborative Problem Solving ©, and uses a combination of Cognitive Behavioral Therapy, Motivational Interviewing, and mindfulness practices in her work with clients and families. In her current role as Manager of Adult Programs at CA, Kat leads a team of counselors in supporting young adults and their families in residential and community-based settings to dream big and to build skills towards living independently.
Anderson, Kristy A., et al. “Transition of Individuals With Autism to Adulthood: A Review of Qualitative
Studies.” Pediatrics, vol. 141, no. Supplement 4, 2018, doi:10.1542/peds.2016-4300i.
Boehm, Thomas L., et al. “Family Quality of Life During the Transition to Adulthood for Individuals
With Intellectual Disability and/or Autism Spectrum Disorders.” American Journal on Intellectual
and Developmental Disabilities, vol. 120, no. 5, 2015, pp. 395–411., doi:10.1352/1944-7558
Cribb, Serena, et al. “‘I Definitely Feel More in Control of My Life’: The Perspectives of Young Autistic
People and Their Parents on Emerging Adulthood.” Autism, vol. 23, no. 7, 2019, pp. 1765–1781.,
Lynda L. Geller PhD & Michael Greenberg LCSW ACSW (2009) Managing the Transition Process From
High School to College and Beyond: Challenges for Individuals, Families, and Society, Social Work
in Mental Health, 8:1, 92-116, DOI: 10.1080/15332980902932466
Francis, Grace L., et al. “Transition Strategies and Recommendations: Perspectives of Parents of Young
Adults with Disabilities.” British Journal of Special Education, vol. 45, no. 3, 2018, pp. 277–301.,