ASA's 37th National Conference on Autism Spectrum Disorders (July 13-15, 2006)

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Saturday, July 15, 2006: 8:15 AM-9:30 AM
Providence Ballroom II
#2228- Lost and Found: Discovering Asperger Syndrome After 50
Families typically learn of autism when their child is young. Life altering and profound , this shakes parental identity to the core. With Asperger Syndrome, diagnosis is often stumbled on in late adulthood, is also life altering and profound, and follows a lifetime of bewildering, relentless struggles in school, work and relationships. Three persistent,courageous individuals share their paths of discovery to AS and resulting journeys: initial relief, review and revision of histories using an AS lens and what lies ahead.

Presenters:Dania Jekel, MSW, Asperger's Association of New England, Executive Director - Dania Jekel, M.S.W.,founding member, Executive Director, Asperger's Association of New England. With over 30 years working with individuals with disabilities and their families including 10 years of specialization with AS , Ms. Jekel facilitates groups for adults and parents, consults to individuals, families, schools and employers. She was honored by BU School of Social Work for Outstanding Contributions to Social Work in 2003 and received the Margaret Bauman Award for Excellence in Services to the Autism Community in 2001. She has presented at numerous conferences on the subject of Asperger Syndrome.

Bekan Knox, OTR, Asperger's Association of New England, Occupational Therapist, Retired; Volunteer, (AANE) - Bekan Knox, 63 ,retired OTR, Nichiren Buddhist, lives with her cat Riki in Arlington,Mass. Educated at Brown University (BA), Tufts University (OT), St.Mary's University,Minnesota, (MA), she studies personality types and the MBTI (Myers-Briggs Type Indicator). She contributed to "Inside the Family", Kantor and Lehr (1975) then built a geriatric and mental health OT consulting practice. Forty years in therapies with hospitalizations did not remit schizoaffective disorder. Help came from AANE in 2004 with an AS diagnosis. Reframing a lifetime with support, she now volunteers. Gathering strength, she wants to give back by becoming an ASD specialist by 2007.

Mark Goodman, M.A., Asperger's Association of New England, Volunteer, AANE - Mark Goodman, 73, lives in Needham, MA. In 1963, Mr. Goodman graduated from Northrup Institute of Technology with a BS in Electrical Engineering. He earned an MA in English Literature from Mancato State University in Mancato, MN in 1973. Mr. Goodman is looking forward to sharing his story of survival, transformation and re-evalution. He is a master of the metaphor and an avid walker. He is a regular volunteer at AANE and other organizations and has spoken at AANE events. His inspiring autobiographical essay, "I Am A Survivor", can be found at

John Rekemeyer, B.A., Asperger's Association of New England, Retired, Director of Communication and Systems, Millipore Corporation - John Rekemeyer, 74, resides in Spencer, MA. He earned a BA in Mathematics and Philosophy from Union College in 1958. He completed 1 year toward a PhD in Philosophy and Metamathematics at Harvard University. Mr. Rekemeyer worked at the Smithsonian Astrophysical Observatory, Honeywell Corporation and retired from Millipore Corporation as their Director of Communication and Systems. His lifelong interests include classical music, pure mathematics, history of science and philosophy.

Jamie Freed, MSW, Asperger's Association of New England, Director of Adult Services - Jamie Freed,MSW, Director of Adult Services, AANE, graduated from Cornell University and received her MSW from Boston University in 1990. Volunteering at AANE after her daughter, now 9, was diagnosed in 2002, Ms. Freed began to work with adults in a support group. Riveted by their stories, strength and wisdom she was committed to increasing programming options for adults with AS. Working at AANE from 2003 in partnership with adults, program offerings have expanded. Ms. Freed has spoken about AS to numerous parent groups and recently wrote "Adults with AS: Let's Look Through a Broader Lens" for the AANE newsletter.

John Halpern, PhD, Asperger's Association of New England, Retired, High Tech Headhunter - John Halpern, 73, lives in Natick, MA.

As public awareness of Asperger Syndrome increases, many people are getting diagnosed with AS early in life: as children, teens, or young adults. However, what about those who were born before 1955, and grew up long before the diagnosis had been articulated in the United States? Older Americans with AS have had life journeys often full of struggle. And yet, being diagnosed or identifying oneself as an “Aspie” late in life can still offer tangible rewards of self understanding and connection.

The Asperger's Association of New England proposes to present a panel discussion. There will be three sections: 1. A Power Point overview will summarize what AANE staff have learned from talking with older adults with AS, their family members, and other professionals. 2. A panel of two men and one woman. All of the panelists came to know they were ASPIE later in life. They will describe their life journeys, touching on successes and failures at work and in private life. One will describe bewildering encounters with a mental health system that did not know about Asperger Syndrome—and therefore could not provide effective help. Each panelist will speak for 10-12 minutes. 3. We will end with a question and answer period.

At AANE, hundreds of adults with AS have enriched our understanding of Asperger Syndrome by opening an ever widening window into their worlds: their minds, their hearts and their humanity. They have become our teachers, interpreters, guides and friends—as we are theirs. The life stories with which they have entrusted us are stories of survival. To become an adult with Asperger Syndrome meant you survived your school years. To become an older adult with AS means you had to survive through the years most people typically spend working, marrying and raising families. Many adults with AS watched their neurotypical peers and family members succeed and thrive while they themselves struggled, floundered, and failed in the arenas of college, work and relationships. Sometimes, to their own surprise, they succeeded—still without quite understanding why. Constantly nagged by a sense of profound difference, they struggled to navigate a social world whose rules everyone else seemed to know by heart—while they'd never been given a manual.

Prevalence: In our ever-growing database at AANE, there are 1,128 adults—and 75 of them are over 50 years old. We have heard from increasing numbers of older adults as media coverage has increased. That the number of adults of whom we are aware has increased recently speaks to the need for more positive publicity, allowing them to recognize themselves in others and seek the support and understanding that they deserve.

Who Calls, and Why

Adults: Primarily, adults self refer, looking to validate their hunch that AS may explain their confusing lives. Some seek referral for formal diagnosis. Some seek support and community. Some contact AANE because they have a child who receives an AS diagnosis, and the parent recognizes the he or she has those same traits.

Family Members of an Adult: Parents, siblings, partners or adult children of adults with AS call, looking to understand their family member.

Mental Health Professionals: We hear from therapists, psychiatrists, or case managers who know or suspect they may be working with an adult who has AS, but do not feel they have enough understanding of AS to provide effective services.

Job Coaches/Rehab and Career Counselors: When they realize their clients may have more challenges than can be addressed through traditional career counseling services they may call AANE.

The fascinating and circuitous routes to AANE include: 1. An article about a mathematician in the London Times Literary Supplement, which makes passing mention of AS, 2. NPR news shows: An Infinite Mind and Fresh Air, 3. A flyer advertising a talk about Asperger's at an adult education program, 4. Reading a New York Times article, 5. A chance meeting at the local dump. For many the discovery comes after hours spent on the internet looking for answers to explain their confusing combination of strengths and challenges.

What Follows Initial Awareness or Diagnosis?

1. Relief and Elation: “I finally found the answer to what's been plaguing me my entire life. This explains everything!” 2. Exhaustive research: Many adults dive in and read everything they can find. 3. Evaluation of the Evidence: What fits? What doesn't? 4. Re-evaluation of life history: a. A review of one's family history, perhaps identifying other ASPIE relatives and the affect of their possible AS on you. b. A reassessment of one's school and work lives in light of the new diagnosis. c. A reexamination of relationships that worked, and those that didn't. d. A reassessment of one's psychological and emotional self 5. Forgiveness of self and others: A common by-product of undiagnosed AS seems to be blame of self and others. With the understanding of one's different neurology that AS provides, and the explanation it offers for why life has been such a struggle, the “blame game” is significantly diminished. 6. Acceptance and Self Accommodation: Many come to accept who they are, and sometimes even to appreciate their own courage, efforts, and particular areas of competence. Often, as they learn how Asperger Syndrome affects them, they will figure out accommodations to reduce anxiety in their lives. 7. Disappointment and Anger: While the diagnosis provides a healing explanation for many things, the neurology doesn't change and the difficulties that one has had may continue. There is significant anger at having been misdiagnosed and misperceived for a lifetime. There are sometimes lasting effects of inappropriate treatment (for example, Electro Convulsive Therapy). 8. Finding Community, whether on-line, in social and support groups, in autism/AS organizations, or in communities of people who share interests. This seems to be essential in establishing a new, healthier identity and reminds people that “you are not alone.” For those who remain isolated, coming to terms with the diagnosis is more difficult. 9. Advocacy: In learning to self-advocate, many ASPIES reach out and help others by sharing their stories orally or in writing, speaking on panels, tutoring, fixing computers, volunteering at an autism/AS organization.

We have noticed that, despite being at the age when many NTs (neurotypical people) are retiring, these adults continue to work daily at self understanding and strategies for improving their lives. There is no “resting on laurels.” Their worlds are rich, their minds full of ideas and reflections. They work tirelessly to find strategies to self accommodate. In a community of their peers—other ASPIES—for the first time in their long lives—they enjoy, relate to, and understand one another.

Learning Objectives:

Participants will learn: 1. Many older adults have Asperger Syndrome, whether formally diagnosed or not. 2. The consequences and benefits of receiving a late diagnosis. 3. How people come to understand that they have AS. 4. How they react to the knowledge of the diagnosis. 5. Through sharing of stories, what AS looks like in three older adults. 6. That there is much to be hopeful for. 7. That we need to work in close partnership with our adult clients. 8. Why adults with AS are our best teachers. What programs and services can be offered to adults, using AANE as a model that others can replicate.

Sufficient Information to determine how the session contributes to best practice and advances the field of autism spectrum disorders.

Identification of older adults as having Asperger Syndrome is very new. With diagnostic criteria originally being applied to children, it was not until adults began to self identify or their family members began to identify them that this category of adult with AS existed. There is no body of work against which to measure our effectiveness. This presentation will be unique and innovative. Conference attendees will have the rare opportunity to hear from three members of a group mostly, as yet, unidentified. Their willingness to share their stories of survival, of resilience, of successes and failures will help other adults to identify their own AS and will be instrumental in aiding in the education of a wide variety of helping professionals.

The staff presenters are among the few people in the world who have the breadth of knowledge of this population. Through programming at AANE they have had significant success in working with this group of people for whom community had always been elusive. They are now our partners in educating those who are interested in and willing to hear what they have to say.

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