All the treatment providers on this website fit into a continuum of care. As a parent of a young adult reviews the options on this website or a young adult looks for options for him or herself, remember this and ask questions. Holly and I met at the Young Adult Transitional Association (YATA) conference and it was there where we began a conversation about Autism Spectrum Disorder, Learning disabilities and labeling clients as “Failure to Launch” (horrible term) -- in this interview we discuss the options and how to look at this.
Holly Daniels, Ph.D is a Licensed Marriage and Family Therapist and meditation teacher from Los Angeles. She currently serves as the Director of Programs at Advance LA/The Help Group, and Clinical Outreach Consultant at Sober College. She also has a private practice that focuses primarily on eating disorder and addiction recovery.
Holly, thanks for sharing your time with me. How about we start at an easy place -- what can you share about the continuum of care that you see for young adults who need support services or treatment on the autism spectrum or with learning disabilities?
Young adulthood can be very difficult for clients and their families because clients no longer qualify for many of the support services that were provided and funded through school districts or regional centers, and yet our young adults are still in need of significant support. Often, the [school district] funding can be extended past the age of 18 but parents have to know how to continue to receive funding, which is not always easy to navigate. If parents are having trouble making sure there is still funding support for their young adult beyond the age of 18, I always encourage parents to seek the advice of a law firm that specializes in regional center matters and autism spectrum issues. (Tip: WrightsLaw)
Considering the continuum of care, there are many options for young adults that range from minimal, ‘outpatient’ support to full, residential support. The most common type of support for young adults with Autism Spectrum Disorder (ASD) and similar issues is in-home coaching support. This is usually one-on-one support with a life skills coach helping the young adult with executive functioning skills, social skills, and vocational and/or academic goals. You can often get a life skills coach through the regional center if you already have an established relationship with a regional center case manager. And there are many independent life skills coaching programs, like us at Advance LA, who provide in-home coaching. Coaching can be contracted for anywhere between 2 hours to 20 hours per week of coaching support. The range covers help with one particularly difficult course to providing significant life and scholastic support to help the young adult successfully procure and maintain college coursework or a part-time job, and successfully transition into a young adult social circle, with the support and guidance of their coach.
Next on the continuum would be day programs that are geared toward helping young adults stay engaged and productive during the day as they did when they were in high school. These day programs offer much of the same executive functioning and life skills support as the in-home coaching services do, but the services are organized in classes that provide a school-like structure of going to the program from 9:00am to 3:00pm. Often these day programs include vocational support helping clients find employment and support throughout the employment experience to make sure the young adults are doing what they need to do to maintain their jobs -- show up on time, successfully problem-solve real-life issues and interact well with their work cohorts.
There are some really cool specialized day programs that focus specifically on a vocational niche. Most of these are geared toward young adults interested in technical, computer based pursuits like programming, cyber-security, etc. There’s a great program in LA called Exceptional Minds that provides day programming for a 3-year period specifically focused on multi-media graphics, computer animation and post production.
When coaching or even a day program isn’t quite enough support for a young adult to maintain a productive, engaged, independent life, the next step of care in the continuum would be a transitional living program. Although there aren’t too many in existence right now, many have opened throughout the country, recently. We at Advance LA have a transitional living program, and I know the Edge in Chicago has a great program, and there are a few others like the College Internship Programs around the country, but I know that in the next few years there will be many more of these programs popping up. In a transitional living program, there are staff present around the clock to help our young adults keep regular schedules, practice independent living skills such as cooking, cleaning, laundry, money management, etc., maintain their health and wellness and take responsibility for their nutrition and exercise levels. Of course, a good transitional living program is also going to help each client map out a productivity plan and figure out how they can engage with the world either academically or vocationally, and provide the social skills support that is so often needed.
In any level of care, there are also ancillary support services that can be of great support for our young adult clients. There are social clubs geared toward the ASD/ADHD population. There are also class modules like the PEERS program out of UCLA that focus on social interactions, how to make friends, and how to date. These classes are offered at different times and can usually be taken in the evenings over a 3 month period.
As we begin to see more and more young adults who are on the Spectrum -- I think something like 50,000 youth who are turning 18 each year have ASD, and almost 40% of young adults (ages 19-23) with autism have not had a job or received postgraduate education after leaving high school -- there will be more support programs created to fill the need.
WHAT? The number of youth who have ASD is staggering. With this continuum of care many of these young adults are truly emerging into adulthood at an evolving pace. Can you shed some light on how a family or emerging adult would choose services?
In a perfect world, a family will have the continued support of their child’s high school service providers who will help them create a full transition plan that includes independent life skills support and academic or vocational strategies, with funded resources to pursue those goals. In that instance, the family will most likely engage with the services offered to them through their regional center or department of rehabilitation office. Unfortunately, many families and emerging adults get lost in the system during this transitional time, and do not enjoy full cooperation from their local centers to fund transitional support.
Therapeutic Educational Consultants can definitely help a family or an emerging adult find the right services. However, the use of an educational consultant can be cost prohibitive for many.
National Advocacy groups like Autism Speaks have online resource guides that list different services that are available for young adults on the Spectrum.
Although more and more programs that support young adults with ASD are emerging across the country, there still are relatively few programs overall, and we’re a fairly close community. We at Advance LA are always willing to help families find resources in their area, and I know that other programs like Edge in Chicago, College Excel in Oregon, or the many College Internship Programs (CIPs) in different cities across the country can definitely provide referrals if contacted by families.
What are the pitfalls or largest ‘problems’ that parents or families have when their emerging adult is receiving any level of care?
The biggest challenge for our families is often re-defining what “independence” will look like for their emerging adult. When navigating a possible move from the family home into a dorm or apartment, or helping the young adult find part-time employment and become more financially independent, families have to challenge all the social norms that tell us that our kids should be ready to move out at 18 and be fully employed and independent by 22. The truth is, for many of our young adults, it may take 10 or more years to fully transition into independent living. For some, complete independence from the family home is not a probability. So we work with our families to define for themselves, with full knowledge of both the limitations and the strengths of their kids, what the transition to adulthood is going to look like. We want families to feel empowered to define this transition for themselves and to not feel like failures if their child’s journey into adulthood doesn’t match the societal norm. And we of course want the emerging adult to understand that as well – each person’s path to adulthood is unique, and each person is worthy of support and care and love as they define for themselves what their life will look like and who they will become.
So we want to help young adults and their families chart realistic goals regarding the possibility of independent living and look openly without shame or sadness about what support they might need in the short term and in the long term, what plans they can make with school, work, living situations, finances that will bring them happiness and purpose, that will challenge them just enough so that they feel a productive forward momentum without feeling overwhelmed.
To be more concrete, the truth is that finances are often a very difficult piece for families as they realize that their young adult may not be able to reach full financial independence for many years. If finances are an issue, I recommend that families help their young adults look into the possibility of disability benefits so that there is some level of income for the young adult as she or he moves toward a more independent lifestyle. There are really great low-cost legal representatives that can also give good advice about all of the laws around disability insurance, creating disability trusts, and those sorts of things.
In your experience, what are the pitfalls for the emerging adult struggles to move forward regardless of the levels of care available?
Well, as a continuation of the above answer, young adults who need extra support are always going to struggle with issues of shame and sadness surrounding the idea that they need support, that their journey into full independence is more difficult that many of their neuro-normative peers. This is the reason that community building is so important. Young adults with ASD and other similar issues need a strong community they can belong to and draw support from.
What tips can you give to emerging adults who need to think about when they are moving forward in their own life? Are there any tips for families?
For both emerging adults and families alike, I strongly suggest getting connected to other young adults and families who have been touched by ASD. There are so many great national and local programs that strive to create a sense of community, and it is so important to connect in order to feel that community support for the long haul. Autism and similar disorders are chronic, life-long issues, and you need the support of people around you who know what you’re struggling with and who also know the beauty and the gifts that ASD brings to individuals and their families and everyone they touch.
There are so many different programs springing up on college campuses around the country that really support our young adults through the college process if that is their path. I always tell folks to research and then contact colleges and universities that have robust support programs in order to find the best fit. Also, keeping current with new legislation and emerging programs on college campuses across the country is really important. I encourage my families and my young adult clients to research all Employment First legislation, as that will shape upcoming vocational programs that will be government funded. Additionally, I encourage people to get Involved however they can with their state’s legislative processes so they can contribute to programs as they develop.
Is there anything you want to add?
The theme here is “Be your own Best Advocate.” Know that there is support out there, and don’t stop until you find the support you need. So many people are daunted by the prospect of beginning the search for support that they are sometimes paralyzed by anxiety, or they feel ashamed that they might need extra support, so they don’t take the necessary steps to find support. Remember that we’re all human, we all struggle, and reaching out and asking for help is always the next best step if you feel stuck or alone. You are not alone, support does exist, and let’s find the way forward together.