A Mom’s Perspective
The reSTART program is really extraordinary---it was truly a transformative experience for my son (and also for me, his mom). Like many other recovery programs, it was challenging---there were many days when it was touch and go. My son was definitely out of his comfort zone, not really sure what he had gotten himself into!(And I have to admit, initially at least, that’s the way I felt also!) But ultimately, reSTART opened a door to self-understanding and personal development, providing my son with a sense of hope that he could be in charge of his life, that it was possible for him to make healthy, life-affirming choices. The reSTART experience for my son was exactly what the name of the program indicates…the chance to start over and the chance to move in some positive new directions with his life.
In the two years preceding his entry into the program, my son was gaming 12-14 hours or more every day. He was socially disengaged, not involved in any meaningful way with family or friends. His whole life revolved around gaming, which really made it impossible for him to function in school or avail himself of employment opportunities. Sleeping and eating were erratic. The very idea of life beyond the virtual world was simply not one he could readily consider. It was as if his personal development and his “real self”---the vibrant, unique person he could be--- had been put on hold, dwarfed by the magnitude of his gaming addiction. It was truly heartbreaking to watch him withdraw from all the really good things that life has to offer.
Finally, my son agreed to see a therapist near our home in Michigan. When the therapist first introduced the idea of participating in the reSTART recovery program, my son couldn’t have been more negative and was really closed to the possibility of participating in an internet recovery program. He adamantly declared that the program was not for him. But there must have been a small part of him that wanted to change, because he did agree to talk with Cosette Rae, the clinical director of reSTART. Wow! What a difference this one phone call made! Cosette was immediately able to establish a respectful rapport with my son. She was warm, encouraging, and empathic, yet quite direct in talking with him about the purpose of the program and what it could potentially offer him in terms of experiencing something different with his life. After my son talked with Cosette, he decided to take the plunge, and within the week was on a flight headed for Seattle. This was a very scary time, with lots of unknowns, but honestly, I have to say, it couldn’t have gone better; everything was in place to facilitate a smooth transition into a completely new living and learning environment. From the moment my son arrived at the Seattle airport, through those early weeks of having to adjust to a new living situation, through the aftercare period, the reSTART team was [and has been] absolutely incredible.
Looking back on this experience, I have to say that I don’t believe my son could have accomplished all he did without the benefits of a high quality residential program like reSTART. Right from the beginning he had the necessary supports to re-evaluate his life, learn new behaviors and skills, and combat a serious gaming addiction. The reSTART facility is beautiful, and designed in such a way as to integrate all the joys and responsibilities of living in a home environment. Residents assume responsibility for keeping a clean living space; there is an expectation that everyone will have chores such as caring for the animals, cooking, washing dishes and clothes, and in general contributing what is necessary to help the reSTART community thrive. This was not at all easy for my son. Prior to entering the reSTART program, my son couldn’t (or wouldn’t) do any of these things; his life had been completely filled with gaming and with the expectation that others would “do” for him. The reSTART program offered him choices with associated expectations and responsibilities, communicated in a matter-of-fact way that motivated him to work through the ups and downs of a personal growth process. It was truly amazing to see the progress he made. He became much more aware of the importance of making healthy food choices, learned how to expertly prepare a meal, and learned strategies to recognize and manage stress. He began to socialize with others, and take an interest in activities other than gaming. He started to volunteer at a local YMCA, and that went well. He participated in weekend activities such as backpacking that were expertly led by Gary, the reSTART recreational coach. These activities were not only fun and challenging, they were also therapeutic, providing an opportunity to experience the realities of teamwork and also the chance to try something new under guided supervision. Clearly, for my son and the other reSTART residents, it was not only a matter of giving up a life dominated by an internet addiction, it was also transitioning into a real life, with real people, real responsibilities, and real opportunities for personal development.
After my son had been in the reSTART program for a few weeks, I arranged a visit. This provided a chance to reconnect with him and also participate in family therapy, which was very helpful for both of us. At that point there was mutual agreement that my son could benefit from an extended time in the program---this would allow time to consolidate gains, make headway in areas that he was still having trouble with, and participate in other community based services that we all agreed could be beneficial for him. I could see that my son needed this extra time, and was really pleased the reSTART program offered flexibility in accommodating the varying needs of each individual resident.
Meanwhile, as the weeks passed by, it also became clear to the reSTART team that my son exhibited many of the characteristics of an individual with high functioning autism, or Asperger’s disorder (AS). We decided to seek independent evaluation by specialists to confirm this diagnosis. It was truly amazing to see how dedicated reSTART staff members were in facilitating timely access to appropriate services. Cosette was just outstanding in orchestrating quite a complex process--- she arranged for my son to be seen by several professionals who specialized in autism spectrum disorders, transporting him to numerous appointments that were required for the assessment and other relevant tests. Finally, the results came in with a diagnosis of Asperger’s disorder. This was not at all a surprise to my son---he was really relieved to have an explanation for many of the problems he had experienced throughout his life. I, on the other hand, was in a state of shock---and had many questions. How could it be that this diagnosis had been missed in earlier periods of his life? What did autism in a young adult with average or superior intelligence look like? If this was an accurate diagnosis, what would be appropriate “next steps” for my son after he left reSTART? The reSTART staff was exceptionally helpful in answering these questions, providing extensive phone support, recommending professional literature on AS in adults, and overall providing the encouragement, information, and recommendations for next-step options that we so very much needed to make good decisions on my son’s behalf.
Some things I learned:
- Since the 1994 introduction of Asperger’s Disorder (AS) into U.S. diagnostic systems, research and practice has primarily focused on children. In truth, this is a lifelong condition with serious implications for the individual with AS as well as for neuro-typical (NT) family members.
- AS is a neurodevelopmental disorder---not a mental illness or physical illness.
- AS is a genetic disorder, and runs in families. Grandparents and parents (of children and young adults more recently diagnosed with AS) may manifest AS symptoms but likely have not been diagnosed with the disorder.
- Many individuals with AS are not diagnosed in childhood---even those who were young children when AS first became officially recognized in the United States. Especially for those on the “milder” end of the spectrum, AS manifestations may be minimized or disregarded in early childhood, but are likely to become more conspicuous in adolescence or young adulthood when successful social relationships and executive functioning are key to almost every achievement.
- AS is a complex syndrome manifest by an array of communication, learning and behavioral symptoms. Although there is a range in the degree to which an individual may be affected, the “autistic triad” consists of difficulties in communication, difficulties with social relationships, and difficulties understanding another’s state of mind. AS should be suspected in anyone who exhibits extreme difficulty with reciprocal social interaction, non-verbal communication, and cognitive and/or behavioral rigidity. Emotional immaturity is also very common in individuals with AS.
- “Gaming” and internet addictions are common in individuals with an AS diagnosis or those manifesting AS symptoms. Gaming may be used as a way to help the individual with AS cope with the pain of “not fitting in”. It can be a way to create or connect with a complex imaginary world that replaces “reality”. It can be all consuming---a fantasy “special interest” that provides the individual with AS a way of feeling competent and “in control”. It can become an effective distraction or way of avoiding life responsibilities for which the individual with AS feels ill prepared. Unfortunately, excessive gaming can also exacerbate depression and anxiety and make it increasingly difficult for the individual with AS to mature and develop in healthy ways.
The diagnosis of an autism spectrum disorder in my son completely transformed my understanding of my son, my family, and the many inexplicable difficulties our family struggled with for so many years. For me, this was truly an epiphany---I now understood the “why” of previously incomprehensible interactional patterns. Although AS varies in terms of severity of impairment, it has a huge impact on the way an affected person thinks, acts, and reacts to others, and it can cause extraordinary pain, confusion, frustration, and anguish for all concerned. For me, after so many years of seeking help for family struggles, finally---finally having an accurate diagnosis has made all the difference in the world. The word “diagnosis” has Greek origins, meaning “to know”; to know the truth of a situation is the beginning of understanding. With a true understanding of the nature of the problem, and new insights into the developmental impact of the condition and how it affects all members of our family (those with AS traits, and those without), we are in a much better position to know what to do about it. The challenges have not gone away, but we now know how to make sense of them. For this I will be eternally grateful to the reSTART staff, for knowing how to really see and accurately interpret the signs of developmental difference, for having the tenacity to help my son access needed professional resources, and for having the patience, courage, and insights to help our family address the realities of this diagnosis.
My son is now successfully attending college and participates in a program especially designed for young adults with AS. He has good days and not so good days. But it is just so incredibly, incredibly exciting to see him making all kinds of progress. He has come such a long way in terms of understanding himself. He has emergent insights into his gaming behaviors, and reports a greater sense of control over forces which formerly controlled him. Every now and then we are able to engage in a conversation that almost feels reciprocal, which is a miracle to me. I still have moments of frustration, but I find that I am much more patient with him, much more tolerant of idiosyncrasies I now understand. Five months out of the reSTART program, I am so very, very grateful my son was able to participate in a program that afforded him so much in the way of personal growth and paved the way for new opportunities.
Because of my own professional work and responsibilities I have had first-hand experience with a number of behavioral intervention programs. I therefore have a basis for comparison that others may not have. As a parent and professional, these are the things I find as really outstanding about the reSTART program:
- An exceptionally talented multi-disciplinary treatment team, expert at tailoring treatment to the individual needs of individuals and families participating in the program, with substantive knowledge of internet addictions, the recovery process, and other disorders that may affect individuals who struggle with an internet/gaming addiction. Cosette Rae, the clinical director, works tirelessly on behalf of residents, respecting individual dignity and autonomy, while creating just the right context and set of conditions to inspire and support needed behavioral changes. Hillary Cash brings a wealth of knowledge and expertise in working with young people troubled by internet and gaming addictions; she is actively involved with residents and connects with them in meaningful ways that create a respectful context for diagnostic assessment and treatment. Gary Simmons, the recreational coach, organizes and directs weekend activities that are such an important part of the recovery process---there’s nothing like having a chance to practice problem solving skills and teamwork when you’re up against nature! And all the other reSTART staff members who model healthy living, healthy relationship-building, and dedication to learning and growth.
- A balanced provision of therapeutic supports and methods expertly customized to the needs of individuals challenged by internet/gaming addictions and related disorders or conditions. ReSTART is milieu therapy at it’s very best---just the right amount of structure, support, involvement, validation, expectations of personal accountability, and array of activities to promote successful daily living.
- A truly safe, respectful, therapeutic environment---this is a program that clearly sets and achieves high standards of excellence in care, where parents and other family members can feel absolutely confident their loved one will receive high quality, ethical treatment throughout the recovery process.
--Former reSTART parent, received 5/21/2011