Conducted by Frank Bird, MEd, BCBA, LABA
Co-Founder, Chief Clinical Officer and Vice President, Melmark

Frank Bird

Frank Bird, Co-Founder, CCO and Vice President

These two interviews with parents of adults with autism illustrate the emotional and logistical challenges of placement and show the need for strong and unrelenting advocacy. They also demonstrate the uncertainty of finding appropriate intervention in adulthood, even when childhood services have been excellent, and all preparation steps have been taken. Indeed, these interviews show the differential outcomes in the transition to adult services; one parent describes a continuance of excellence in care and an adult who is thriving, while the other paints a picture of an individual who has lost skills and spends their days alone and unengaged. The interviews heartbreakingly show the capriciousness of the transition into adult services, the need for funding and advocacy, and the urgency associated with achieving equitable outcomes for all adults with autism spectrum disorder (ASD).

Frank: You had the opportunity to experience applied behavior analysis (ABA) services for your son from a young age until 22 years of age; can you tell me a little about that experience? What words would you use to describe the intervention your child received? What about the support given to your family?

Parent One: Our son started in early intervention with ABA services. There is no doubt this structure and the routines and teaching helped him develop some really important skills. We were fortunate to continue into a 12-month school setting that also had ABA services and from day one, his skills continued. It was not only ABA but also the staff and the program that embraced the input from us and created an environment of support and compassion. Their speech and OT folks were incredible and worked alongside the teachers and clinicians to really create a well-rounded program. When our son transitioned into residential services, we saw amazing growth with his toileting, communication, and his everyday skills of toothbrushing and showering. They also had a parent training program and came to our house to help us so that we could have our son home during weekends and holidays. We became pretty good with ABA skills; it helped with our typically developing daughter as well! The words to describe ABA would be goal-oriented, data driven, and functional.

Parent Two: We chose the program because of ABA. We realized early on that this system, this teaching, was going to be what our son needed. Our son is where he is at (or was…) in terms of his behavior and communication because of ABA. ABA alone is not enough; you also need the administrative support to make a teaching environment. We were fortunate to have all of this in our school program and residential setting until our son turned 22. The staff taught us about data and how to use this information to make decisions; we would joke that with all the training we got, we could have passed the BCBA exam! The words to describe ABA are analysis and making decisions from that data.

Frank: You also had your son attend residential services during this time. Please tell me a little about that. Many parents worry about their child living elsewhere. Did anything help ease your initial concerns? What helps you feel comfortable with the arrangement now?

Parent One: I still remember the day my husband and I brought our young son to his residential services. Our emotions ranged from great sadness and anxiety and disappointment to a sense that he needed twenty-four-hour help and that we had to do something to keep him safe. It was so emotional, and we were scared. But the transition was amazing! The staff and the administration were so caring and supportive. They were welcoming and gave us great confidence that we did the right thing. And there is no doubt, this model and ABA services that were provided day in and day out, gave our son a setting that helped him to simply blossom. Yes, there were challenges and ongoing sadness that he wasn’t with us but seeing his development, his learning to communicate and the lessening of behaviors was inspiring and gave us hope. Over the years, our son was able to come home for weekends and holidays, and the intervention got him ready for adolescence and young adulthood. This program saved our family!

Parent Two: I never imagined that I would or could make this decision! I remember saying to my husband after hearing some friends of ours who placed their daughter in a residence, “never will this happen to us.” But it did. Our son needed more than 6 hours a day of good programming, his skills were not maintaining or generalizing, and his behaviors had gotten worse.  We really had no choice, but we did have a choice as to where he went. Critical in this process was to find a program that was ABA-based, had quality staff and a “heart” to match. We found such a program, which let us come to a place of being comfortable with our decision. This program did amazing things and our son’s profile changed dramatically. I know our experience was so different from others and I know that other children with autism do not need residential care. But for us, we needed to keep our son safe and give him a chance to be more productive. The greatest satisfaction for us was when we returned him to his house after a weekend visit with us, he would always run into the house to greet his friends and staff. We made the right choice!

Frank:  Your son turned 22 and graduated to adult services. Can you tell me about the transition planning and process? Ideally, when do you think parents and teams should begin preparing for the transition to adulthood? What kinds of things did you begin to think about or plan for and when?

Parent One: We were so fortunate to have a children’s program that understood adult programming, the adult service delivery system, and had a masterful plan to prepare our son and us. At the end of the day, we were able to get an adult placement that met our son’s needs, ABA-based, great staff, and huge administrative support. It is not the same as what we got educationally, but then again; our son is now an adult. He lives in a five-person home with peers that he has known for years, the house is beautiful, and the staff are so compassionate! Parents need to be involved early on and most importantly, parents of kids turning 22 must demand more from the State. Adult services are underfunded and very few have ABA services of quality. There is no doubt we are the lucky ones!

Parent Two: The organization that our son was in during his childhood years had a great transition program. They started meeting with us when our son was about 17 years of age, helped us with legal paperwork for guardianship and started talking with us about adult services and how to navigate the adult world. It was difficult to hear and yet they stayed with us. They met with us and with Developmental Disabilities Services (DDS) personnel and supported our intense range of emotions. They met the potential vendors, created plans for the transition, and offered to train and support the new program. The process was incredible, but the transition was a failure. The new program had no clinical services, and the staff there just did not have any support. We realized this placement was just not going to work. We tried and they tried, but it just wasn’t a fit. This was the only program that accepted him, but they didn’t know what they were doing. Having a choice of one is not a choice! The discouraging thing is that we started early, we advocated early, were actively involved and still, failure. I can only recommend that changes must happen in the state: more money and better services!

Frank: Your son has now transitioned into his adult placement, tell me about that experience.

Parent One: There is no doubt we have been blessed to have a program that provides ABA services and has a structure in which the staff is active and engaging. The services are not as intense as when my son was in children’s services and staffing patterns are not as robust. That being said, staff are trained and are supervised by clinicians and demonstrate great empathy for all the young adults. Now that the pandemic has subsided, my son and his housemates are back in the community! My son sometimes struggles and has significant behaviors, but staff keep him safe and manage his tantrums. I know many families don’t get this type of programming and are deeply concerned, but there just are not enough services that understand the importance of having a well-trained staff, supervision, and clinical services.

Parent Two: It has been so disappointing. The staff does not have the training or support and there really is no clinical expertise. My son has become a danger to himself and others, and I am working on getting him a new vendor. It has not been a good match. I am working with DDS and they are understanding, but there are limitations and that there are very few programs in the state that have ABA services. It is difficult to watch all the skills that my son had disappearing. He does not participate in any household routines as it is “his choice” to stay in his bedroom. I understand that as an adult he has certain rights, but as a mother can’t I have rights as his guardian so that I can encourage the staff to get him engaged?

Frank: What would you recommend to other families who are experiencing this transition, how should they prepare themselves? How should they help prepare their son or daughter? In retrospect, what helped the most?

Parent One: My family was very fortunate to have our school-age program as our advocate. They were so knowledgeable about the adult system and started meeting with us when our son was 18 years of age. They helped us with guardianship, Supplemental Security Income (SSI), and were willing to meet with us throughout the transition process. My husband and I realize we were fortunate to get into an ABA adult placement and sure, services are different in adult programming; however, we are confident in the people who run the program, knowing they will help us and our son. I think parents have to become advocates for ABA services and be prepared to get involved. Do not assume things will be as they have been and learn to change your expectations.

Parent Two: I thought I did prepare myself. I realized that things would change, that resources would be limited, that staff might not be as well trained, that the ISP (Individualized Service Plan) wouldn’t be like the IEP (Individualized Education Plan). These changes were explained to me by my son’s educational team and DDS, and yet, I was not prepared for what I experienced. I recommend that parents talk with other parents who have experienced the transition and how they dealt with the system, visit adult vendors, ask questions, a lot of questions!  And use the expertise and support from your child’s existing school or residential setting, they can help and guide you. Unfortunately for me and my son, the choices for adult services were extremely limited, I was given a choice of one and that one had no ABA services, no clinical structure. Many of us had to fight the system to get our kids into evidence-based children’s programs. We found we had to be prepared to be strong advocates again.

These parent stories exemplify the arduous transition from childhood to adulthood for individuals with autism and for their family advocates. Indeed, the availability of appropriate programs, supports, and expertise is woefully inadequate.  The need to advocate for their children does not end with attaining the age of adulthood.  Perhaps most profoundly, the individuals most impacted by autism are often least able to self-advocate, making their family’s advocacy essential.  In many ways, the quality of programming, and the individual’s quality of life itself, depend upon the continued advocacy of others, most notably, parents.

Citation for this article:

Bird, F. (2022). The transition to adult services: Two parents’ journeys. Science in Autism Treatment, 19(3).

Other Related Interviews:

Related Media Watch Letters:

Other Related ASAT Articles

#Adolescents #Adults

Print Friendly, PDF & Email