Who’s on Your Team?

Jamie Freed, MSW, AANE Director of Adult Training, Senior Clinician

Many children with Asperger Syndrome (AS) are fortunate enough to have a team of people to support and work with them. In addition to parents, the team can include any number of professionals who think about, focus on, and implement recommendations to address the specific needs that arise as a result of AS. Although some people on the team may work with the child in settings outside of school, a solid team of parents and educators is of critical importance, because school is a major focus of a child’s or teen’s life.

Developing a harmonious, effective educational team is not easy. Even when the team is in place, it doesn’t necessarily mean that their recommendations are always on target, always implemented, or 100% effective. However, by creating a team, there is at least an acknowledgment that children with AS have complex needs, and require sustained attention and targeted intervention to build on their strengths and to provide support in their areas of challenge. We see that children and teens with AS do better when teams meet regularly and work at providing interventions and supports to help students advance toward the goals in their Individualized Education Plans.

Now let’s consider adults. Do the needs of people with AS disappear when they achieve the magic age of 18 (age of majority) or 22 (when eligibility for public school funding runs out in Massachusetts)? Have they learned by this age all the basic skills they need to achieve success in life? Are they realistically prepared to handle the myriad of challenges adulthood presents? Some are well on their way to independent, successful lives. They know how to ask for the kind of assistance they need from college disability or student services offices, from a work supervisor or the Human Resources department. Many have figured out their sensory needs, and developed successful coping strategies: avoiding environments that are over-stimulating, or building into their days routines to calm an overloaded sensory system or activate an under-aroused one. Many have found the area of study or work for which they are appreciated and rewarded. Many find mates who value their unique qualities, and have satisfying personal lives. However, many adults we know—interesting, bright, funny, and talented people with much to offer—have challenges that, unaddressed for months, years, or even decades, feel insurmountable.

Most of the adults with whom we work at AANE did not have the benefit of an AS diagnosis and appropriate interventions as children. Even younger-diagnosed adults may have received inadequate transition services in high school, or “fell off the grid” when they exited the structure of high school or college. Many have gotten stuck, and are leading lives marked by failure and social isolation. They may be unemployed or underemployed, lonely and discouraged. But what if, as an adult with AS, you had a supportive team focused on your individual needs? Where would you start? What would you work on? Who would be on the team, and what type of support would each team member provide?

At AANE, we are attempting to begin answering these questions and addressing these needs through our new program, LifeMAP: The Life Management Assistance Program. Through LifeMAP, an adult with AS (or High Functioning Autism, PDDNOS or Non-Verbal Learning Disorder) can receive intensive, individualized support from a life coach, in order to address specific, concrete issues of concern in his or her life. Each coach and client with AS (or Aspie as some adults prefer to be called) agree upon specific goals, and meet regularly (usually weekly) to take steps toward reaching the goals. AANE staff supervise coaches, and progress is evaluated by client and coach throughout the program. Currently, LifeMAP employs seven coaches, working with a total of 17 clients. From October 2008 through June 2009, some adults had slots funded through the Department of Developmental Services, while other slots were paid for by the adults themselves or their families. AANE is slowly growing this program, hoping that we can expand it more to meet the needs of the adult community.

However, if you are an adult with AS, you don’t have to be part of LifeMAP in order to make desired changes in your life. You can create your own team. (Likewise, if you have a family member or friend with AS, you can create a team with him or her.) Team members can help you accomplish tasks, learn new skills, provide encouragement, and give you respectful yet honest feedback. The truth is that in our complex society, even adults who are not on the autism spectrum assemble teams as well, and rely heavily on them for their happiness and success. That is, we all rely upon a variety of other people (and machines and systems) to provide certain expertise or perform certain tasks in our lives, whether it’s a dry cleaner, a car mechanic, a farmer, a chef, a tax accountant, a therapist, a best friend, a spouse, a trusted colleague at work, or a professional mentor. People with AS may just need some extra guidance or support in figuring out who should be on their teams.

Identifying your specific needs is the place to start. Selfawareness is key to determining your needs, and therefore identifying who should be on your team. First, it’s essential to be aware of the components that combine to create AS, and of how those components specifically apply to you. What is your “brand” of AS? How do AS traits manifest themselves in your daily life? Identifying specific challenges resulting from AS will guide you in figuring out what you want or need to work on, and what interventions would make sense for you. Then you can identify who might be available to help you.

Who would be on a team for an AS adult? A team can be made up of family members, friends, colleagues, acquaintances, social or interest groups, pets, community members, professionals (clergy, pharmacist, gym personnel), etc. Team members can be paid or unpaid, short-term or long-term members, and can be found in a variety of ways: referrals to professionals, Craig’s list, meetup.com, on-line interest-based or social networking communities, social groups, family gatherings and more. AANE offers a variety of support and social groups that could be part of the supports that an adult with AS might access.

In addition to team members who are people, you can identify tools or strategies that work for you, and keep them in your house or in your mental “toolbox.” Tools might include items to address your sensory needs, such as weighted blankets, fidget toys, soft clothing etc. Acclaimed author Temple Grandin built herself a squeeze or “hug” machine which settles her system down after intense sensory and social experiences. There are tools available to assist with executive functioning or organizational challenges such as personal digital assistants, calendars, cell phones etc. Some websites, such as www.napo. net or www.flylady.com, have tips to help with organizing things in your home. Any of these can be helpful to an AS adult, but the same things won’t work for everyone—you need to create your customized toolbox.

Assembling Your Team

What kinds of people or expertise might you need on your team? While each person’s needs are unique, there will probably be certain general areas in common. What follows are some suggestions of common areas of need for adults with AS.

Help making safe, rewarding social connections

(Social Director/Social Connector/Social Organizer)

AS is a social communication difference, so this area can be extremely challenging. Many adults with AS want to connect to other people, and have the ability to take part in reciprocal social activity, but don’t know how to get started. (The popularity of AANE’s pizza and game nights, social activities, adult-only conferences, and groups are evidence of this desire and ability to socialize and connect.) If you experience difficulty connecting, you may want to recruit a team member who can provide a bridge to a richer social life. Depending on your need, this team member might help you finding a social group, or attend an event with you, especially the first time, to reduce your anxiety. It may be easiest to pursue social opportunities that are based on common interests. Fortunately, there are on-line social networking sites which facilitate in-person meetings among those who share the same interests. Given the success of sites such as www.meetup.com, there are obviously others, not just those with AS, who desire social connection with individuals who share similar interests.

Help with Social Skills/Thinking/Pragmatics

(Speech Therapist/Life Coach/Friend/Family Member)

Social skills and conversation—so important in our society—do not come intuitively to people with AS. However, these skills can be learned through explicit instruction and practice by relying on the considerable cognitive skills possessed by many AS adults. While children with AS are likely to receive such social pragmatics training nowadays, adults often missed getting this help. It can still be very helpful for an adult to work with a speech therapist or life coach to anticipate or role play social situations before they happen, or review them when they are over.

Help with organization or executive functioning

(Administrative Assistant/Secretary, Organizational Coach)

Executive function skills enable people to handle life’s practical demands at home, at work, and in one’s social life: make and implement plans, organize physical things in one’s work or home environments, organize/schedule activities and manage time, get started on tasks or projects and persist step by step to completion. Adults need to use these skills, for example, to set up systems to pay bills, shop, clean house, and cook. Multi-tasking is often required even if you live on your own, but especially if you’re working and/or have a family and household to manage. Because of the pervasive nature of these executive functioning challenges, many AS adults may need on-going support in the form of team member who provides specific, targeted assistance in this area.

Help finding emotional support

(Therapist/Coach/Friends/Family Members)

Emotional support is sometimes indicated, because it is hard to live in a world where you feel different. Many adults struggle with depression and anxiety as by-products of their AS, as a result of difficult life experiences, or as an additional, co-existing mental health condition. Some strongly benefit from working with a therapist who has a solid understanding of AS in general, of the specific emotional needs of a client, and of the variety of approaches that work best for Aspies.

For some adults with AS, medication can be a helpful tool, especially to alleviate depression and anxiety. For this group, a psychiatrist or psychopharmacologist can be a key team member. For others, medication is not indicated.

Help with employment issues

(Employment, Career, or Rehab Counselor, Job Coach, Human Resources Professional, Supervisor)

Employment is another area of significant challenge for many adults with AS. Our community is full of gifted and talented adults—even many with advanced degrees—who are unemployed or underemployed. Even those who are employed often struggle with fitting in at work, or meeting others’ expectations. Working with a knowledgeable employment counselor or coach could be very helpful. An employmentfocused team member might help to: organize the job hunting process, identify good-fit jobs, help you prepare for interviews, assist with social or work challenges that arise while on the job, and work with clients around “strategic disclosure” of AS to employers.

Health and Wellness

(Doctor, Dentist, Personal Trainer, Cooking Teacher, Dietitian)

Health care can also be a challenge for adults with AS. Asking for help, in general, is a challenge as it places a social demand on an individual and involves recognizing one’s own needs. Communicating with health care providers can be especially daunting if there is a serious, anxiety-inducing health issue being addressed; communication abilities decrease when anxiety increases. Seek health care providers with an understanding of AS, or a willingness to learn about it.

A regular exercise or fitness routine can provide both physical and mental health benefits to adults with AS. There are many adults in the AANE community who practice meditation or yoga, or who walk longer distances and more frequently than the average person.

Help with sensory challenges can come from an occupational therapist, from consulting other adults with AS about strategies or materials they find helpful, or from looking at catalogs or web sites that sell sensory aides.

The AS Adult Community

Fellow Aspies may be your most important source of support and information through face-to-face contact, support and social groups, through the growing on-line community, or through organized groups in the Autistic Self Advocacy community including ASAN New England or GRASP New England. Adults with AS are often best understood by other AS adults. Being connected to others who share similar qualities and difficulties may make you feel less isolated and alone, and more empowered. (Please visit our website for an updated list of on-line communities.)

Ready, Set, Go!

Everyone can’t be equally skilled at everything. The things that Aspies excel at are critical to the forward movement of society. If Aspies get the targeted assistance needed in their challenge areas, they can be freed up to work on the more creative areas in which their skills and expertise are sorely needed. You also can’t do everything or afford every possible intervention. Here are some suggestions of first steps:

  • Identify your current team.
  • List the team you’d like to have.
  • Call the AANE Adult Services Team. Either by phone or in person, we can help you identify your “brand” of AS, identify and prioritize your specific challenges, and think through who or what can be helpful.
  • Be creative! Your team may, and in many cases should, include mental health professionals—but in some cases that’s not who is needed. Be open and creative when thinking of ways to address the specific needs that you have. Having a team member to help you figure out how to clean and organize your living space may significantly reduce depression, increase self-esteem, and free up energy for other things.

For the parents of adults (or siblings, or other concerned relatives and friends) who continue to play a major role—or many roles—in the life of an adult with AS: that’s okay! Since AS is a developmental delay, it’s not surprising that parents will continue to be more deeply involved in the lives of their adult children with AS than they would expect to be in the life of a neurotypical adult child. However, promote your adult child’s independence by helping him or her recruit a robust, trustworthy team. Then you can slowly step back to a distance that feels right to both parent and adult child.

What if someone is in denial, and does not acknowledge that s/he has AS? It may still be possible to provide assistance. Many individuals object to the label, but recognize their challenges. Don’t be hung up on making someone accept the label, if it’s possible to proceed with helpful interventions anyway. For those who are less aware of their own needs, getting the right interventions can still be very helpful. However, it may take a team member to decide what those interventions might be, and to persuade the adult with AS to participate. You will need to be persistent, creative, and patient, allowing the adult with AS to become familiar with new ideas, new approaches, or novel interventions. Sometimes when an adult with AS says “No,” the person really means, “I need more time to get comfortable with this idea.” Don’t assume it’s a flat out, permanent rejection of your idea—don’t be discouraged.

For the Aspie adult (or family member): Don’t go it alone! Remember that all of us humans rely on teams for support, encouragement, guidance, and assistance in the areas in which we are not skilled. For an Aspie adult, a versatile team skilled in the areas in which you are challenged may allow you to spend your time, energy and mental resources on pursuits which highlight your unique talents and skills.