RP from 2017: I appreciate all of the positive responses to my last post Creating A Brighter Future for Adults with ASD - The First Step: Advocating for A Positive Future and hope that caregivers, educators, professionals, and individuals with ASD continue to benefit from my insights. My hope is that with newly learned information parents feel empowered to be compassionate advocates for their child’s future successes and independence.
This month provides insights into the drop off in services that many young adults with ASD and their parents experience after exiting the special education programs that have prepared them for their future. This exciting yet worrisome time is influenced by the extent of mindful work done in the previous years of transition planning. This is also the focus of Hopkins Education Services Mighty & Mindful program for youth with ASD.
The needs of individuals with ASD do not end when they exit public education, but sadly many of their support services do.
So, when services end and young adults with ASD leave a special education program and do not become employed or enter higher education, what happens? The National Autism Indicators Report: Transition into Young Adulthood research shows that 1 in 4 young adults with ASD are in a situation where they feel disconnected and are not receiving any support services (Roux 2015). Ruminating negative thoughts are likely to take over and it becomes more difficult to reconnect to social and academic
supports once the tie has been broken.
Supports are essential to connecting individuals with ASD to employment, higher education, and a more independent life, which we can all agree results in increased self-esteem and overall wellness. According to the study, the struggles that I have seen during my professional career in the Denver Metro area are being experienced by families across the United States. Let’s not forget that 50,000 young adults with ASD graduate from high school each year. We also know that 26% of youth with ASD experience disconnection and absence of services. Simple math tells us (50,000 x .26) that at least 13,000 young adults with ASD are not receiving the support they require to live into their full potential each year as they exit public education. The report indicates that many services that support individuals with ASD (such as speech language therapy, occupational therapy, career coaching, mentoring, general therapy, etc.) are no longer readily available, as displayed in the diagram below (Roux 2015).
Often, life as an adult for many disconnected individuals sadly becomes limited to playing video games and watching TV or DVDs for mental stimulation, as it is familiar, safe, and controllable. I believe that this does not have to be the case, if parents are educated and empowered to connect and support their young adult as they transition out of public education. The years of transition planning for the individual become critical as individuals move away from the structure and supports of their school program and into life of independence and unpredictability. A proper transition plan should ensure a child has developed the many areas needed to be self-sufficient and as independent as possible based on their unique needs.
In my experience, this is the critical point when parents and families must be educated on how best to support their child and continue with the transition plan established with the school/case manager in the previous years. Individualized planning will ensure that the level of supports needed for transitioning into adulthood match the needs of the individual to optimize independence. Creating a structure in the home is paramount, as it is possible to see a decline in independence and overall wellness. As is often the case, in the absence of structures, individuals with ASD will create their own habits and routines when provided extended ‘free’ time. It could then become difficult to extinguish these habits with out a comprehensive behavior intervention plan. A solid transition plan will provide an opportunity for an individual to continue moving forward toward their goals as they transition into their post-secondary options.
So what can you do to support your young adult transition into adulthood?
As your child prepares to exit public education, ensure some structures/supports are in place to continue
your child’s growth and progression toward independence. You must also educate yourself. Below are some questions that I have focused on when working with young adults and families as they transition out of public education settings:
How will your child get around independently to recreational, educational, or employment activities? (They should not rely on a ‘Parent Taxi’ to get around.)
What government or private agencies are in your area to support your child in their area(s) of need? (mentor/coach, psychologist, therapist, speech language pathologist, higher education support services, etc.)
What social groups are available for your child to join? How will your child be able to connect with friends/peers to be social? (If there are none, how could you create one?)
What daily living skills does your child need to live independently? What residential options are available for your child?
Is there a balance of work and social/recreational activities to stimulate and motivate your child as they navigate adulthood?
What are some attainable goals for the next month? 6 months? A year?
Being able to answer a majority of the fore-mentioned questions with certainty and clarity will help to support your young adult with ASD as they strive to become successful and independent. If you are a parent of a young adult with ASD who has already exited public education and are seeking support, support is out there. Have faith that independence and success for your child is within reach and seek support.
I would also like bring attention to a crucial fact that young adults with ASD are young adults first, and desire to be treated equally and feel success, as would anybody else. Focusing on the individual is central to my work at Hopkins Education Services in developing the Mighty & Mindful program for youth with ASD and it has proven to translate into happy and successful young adults.
Roux, Anne M., Shattuck, Paul T., Rast, Jessica E., Rava, Julianna A., and Anderson, Kristy, A. National Autism Indicators Report: Transition into Young Adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University, 2015.