Toni (name changed) has lived alone for most of her 63 years, plagued with a nagging sense of hopelessness and never enough money. With no family supports to speak of, she often felt utterly alone. Her tiny government-subsidized apartment used to be crammed floor-to-ceiling with old books, papers, and nick-knacks that Toni never had the wherewithal to sort through – but things are looking better now. For the first time in her life, Toni has found support that really works.
Nomi Kaim
Toni has late-diagnosed Asperger Syndrome (AS), and she is now a member of the Asperger’s Association of New England (AANE) in Watertown, Massachusetts. One evening, while attending one of AANE’s numerous support groups for adults with AS, Toni divulged that her home walk-in closet had been impassable for over six years. A staff member took note and thought things over, and a couple of weeks later, Toni was set up with her first LifeMAP coach.
The Life Management Assistance Program, or LifeMAP, is a life coaching program designed specifically for adults of all ages with AS and related disabilities – adults who, like Toni, are self-sufficient enough to live independently or with minimal supports, but who also struggle mightily with organizational, social, interpersonal, educational, vocational, housing, or other practical difficulties common to AS. Coaches are independent contractors with an extensive professional background in ASD. They are carefully screened and individually matched to each client, with whom they meet between several times per month and several times per week, depending on the client’s needs. Coaches work actively with their clients one-on-one (or, in some cases, with parents) to strategically overcome specific impediments to clients’ everyday quality of life. Because LifeMAP hires a wide range of coaches from diverse professions – occupational therapists, social workers, nurses, teachers – the program is set up to tailor to just about any practical life challenge an individual with AS might encounter.
When she first met her LifeMAP coach, Toni’s primary goal was to clear out her closet. “I just couldn’t do it alone,” she says, citing her weak executive functioning and attentional deficits. “There were decades worth of ill-fitting clothes, books, writings, and 45 years of letters from my parents. Physically, emotionally, I just couldn’t bring myself to get started. I didn’t have a linear way of getting through it all. I didn’t know where to begin.”
Toni’s coach, a bright, patient woman with a keen sense of humor and a background in occupational therapy, quickly helped Toni break her gargantuan task into concrete, manageable, achievable steps. The two of them divided Toni’s supplies into designated categories: to keep, to throw out, to give away. Together, item by item, pile by pile, they cleared out Toni’s closet.
“I could never make those kinds of decisions by myself,” Toni explained, “But with my coach helping me I was able to focus and not get intimidated by the task.”
It felt so good to have an accessible closet that Toni decided to move on to the main room. They started with the photographs – hundreds of them – dating all the way back before Toni’s birth to her parents’ youth. As they created notebooks of her memories, Toni chatted with her coach about her unhappy relationship with her parents, who had not known about her AS. The two of them talked easily together, working all the while, and as the tidy notebooks were lined up neatly on shelves, Toni felt a tidying of her troubled mind, too. “In the process of organizing my belongings, my mind became more organized,” Toni said. Later she added with incredulity, “One year of coaching has done more for me than 40 years of therapy! Really, it has.”
Toni’s life was getting better every day, but things were not to last. Just as her home was emerging from its spatial chaos, Toni lost her coach. With the downspiraling economy, the Asperger’s Association lost its partial government funding for LifeMAP – funding that had allowed Toni and a number of other low-income individuals to see their coaches at no fee. Without this crucial financial backing, a LifeMAP coach costs $60-$75 per hour – markedly less than a typical psychotherapy session in the Boston area, yet still far more than clients like Toni can afford (Life coaching is not covered by most forms of health insurance).
Right at this point Toni began to feel ill and lost her appetite. She was losing weight, and doctors’ advice to modify her diet wasn’t working – because once again, Toni just didn’t know where to start. She was in desperate need of nutritional counseling, but she could never have afforded a nutritionist.
Luckily, Toni lives near AANE and was able to obtain a new coach in exchange for volunteering at the office several times a week. Toni’s needs were different now – more urgent – but LifeMAP was set up to meet them. The second coach was exceptionally gentle but highly proactive. She lost no time in helping Toni design a daily meal plan, plan a shopping list, and stock her cupboards with nutritious, affordable foods. Faster than ever before, Toni was back on her feet.
As her health improved, Toni and her new coach gradually moved on to other areas of her life. They tackled her longstanding spending problem (Toni said it was easier to spend wisely just by virtue of being able to locate all of her belongings!). They sorted out her finances and organized all her medical information, which did a lot to put Toni at ease about living alone, far from friends and family.
Although Toni’s no-fee coaching arrangement is now an anomaly (and a lucky break!), her experience with LifeMAP is hardly unique. LifeMAP has transformed the lives of AS adults in all walks of life, from seasoned professionals facing communication hurdles with their supervisors or colleagues to recent high-school graduates stuck in their bedrooms playing video games. Some of the most vocal “satisfied customers” are parents of young adults on the autism spectrum who are relieved to see their recently-grown children receiving the supports they need to gain skills and independence as they head off to college or look for or begin jobs. The parents of a newly-employed young man with AS wrote in, “Our son is so proud of himself right now and so happy to have a job. So far, we have heard quite a few compliments about him, from both his boss and two co-workers. His anxiety level has plummeted since he has a job where people are encouraging him rather than putting him down. We have to believe it is the coaching that is making the difference. Thank you!” Another couple reported, “We are more than pleased with our son’s coach! She has helped him through the paperwork of getting health insurance and encouraged us to get further diagnosis that has helped him understand himself and his world a little better. She is now training him to manage employment and social issues that arise in a society that doesn’t always make sense to someone with Asperger’s. She has kept in touch with us and made suggestions we had never thought of. We truly feel that our son’s coach has saved his life and our sanity!! We will forever be grateful to AANE and the LifeMAP program!”
As for Toni: one year into her LifeMAP coaching, she has never felt more optimistic. She relishes her meetings with her coach and her new lease on life. “My coach is so encouraging, so positive,” she says. “I have become a more positive person myself. I went from living aimlessly to a more focused approach to life. Now I’m thinking more specifically about what I want to do with my time, what I want from my future, what kind of legacy I want to leave behind.”
Two years old and counting, LifeMAP is eager to spread its legacy of success.
Nomi Kaim was diagnosed with Asperger Syndrome at age 20 and currently volunteers at the Asperger’s Association of New England (AANE) in Watertown, MA, where she is a member.
For more information about LifeMAP, please contact Nataliya Poto, LifeMAP program director, at nataliya.poto@aane.org or 617-393-3824 x19 or visit www.aane.org.
