Autism takes many more forms than most people realize. Likewise most people overlook the tremendous gifts the most autistic people have because they don’t understand the sensory experience the distracts them from the details the rest of us absorb.
Take my amazing son who was diagnosed as on the autism spectrum because of his obvious sensory integration disorder shortly after birth.
Sensory Processing Disorder or SPD (originally called Sensory Integration Dysfunction) is a neurological disorderin which the sensory information that the individual perceives results in abnormal responses. … Those with SPD perceive and/or respond to sensory information differently than most other people.
While many children show sensitivity, my son’s reactions to sound, texture and certain other stimulus was much more extreme. Getting wet, the wrong fabric it smells, and even the wrong music or sounds overwhelmed him so much that he would instantly shut down by going into a deep sleep. His defensive responses to his sensitivities when he was young caused him to turn out and turn off the outer world. While very athletic with extraordinary balance and coordination, he avoided sports and other group activities. Coaches, children and parents yelling were intolerable.
On the other hand, from the time he could walk, he exhibited an extraordinary gift working with animals, humor, music and art… And if you were one of the lucky people who he bonded with, he shared those gifts with you.
In his youth, unlocking the door to his beautiful mind and helping him function as a child with an old man’s mind was a challenge for him, his parents and his teachers and caregivers. Those of us blessed with access to his amazing mind and world were enriched beyond belief even as we struggled to help others reach across his barriers to connect and fought off the threats from those who couldn’t it wouldn’t make the effort.
The journey through childhood was challenging but the rewards, extraordinary. He was aided by the support of his support lizard and an understanding and supportive former child psychologist turned middle school principal in making the transition from the safety of a small classroom in grade school where he rarely rotated classes to full integration into a large urban middle school amid the loud noise and jostling of changing classes seven times a day with hundreds of other children.
He mastered math, history and science but struggled to cope with English and other humanities. After struggling to find the important points in the children’s emotion and symbolism-laden story “The Prince,” he matter of factly reported that three tradings revealed there was “nothing important” in it. He then spent two weeks painfully discussing the hidden meanings to master the symbolic language of the archetypes and emotions he doesn’t experience so he could understand others rather than playing his accommodation cards.
In American Sign Language, he was on track to becoming fluent when suddenly his grades dropped. His instructor reported she couldn’t get him to exhibit the emotional facial expressions required for fluency. Creative problem solving followed when I reminded her he is “on the spectrum.”
As the noise of participation in most of team sports, homecoming and prom, pep rallies and the other school rituals were too loud for him to enjoy, our son rarely participated. By accepting early our son’s uniqueness, however, we learned to enjoy his interests rather than to force him to compete in the community definition of “normal.” In the process, we learned that sensory integration disorder is really more of a gift that’s hard to live with because it doesn’t fit our society’s generally accepted loud and overstimulated socially charged expectations. In learning about our son, we’ve learned to seek to discover and celebrate his and others’ unique gifts as they share them.
Today, my son is 18 and a thriving, successful, self-sufficient, but still introverted college freshman.
He prefers drive thru and delivery (preferably with someone else opening the door) to dining in restaurants but regularly invited mom for a drive they Starbucks date.
He is a voracious learner of almost any subject, a provocative conversationalist and a connoisseur of fine coffees, teas and e optic fruits.
He listens to, plays and composes a diverse range of classical, jazz, ragtime, crooners and Classic 60s and early 70s bands. Through his music lessons he has bridged the gap of understanding and expressing emotion. His vocabulary has exploded with adjectives. Turns out we just weren’t speaking his language.
He is well informed and can politely discuss and debate most current popular world issues and many scientific and musical ones few will ever encounter.
He teases friends and family unmercifully, a gentle but intelligent wit.
While not highly social, he is a student of humanity. He observes and accepts with out judgement his fellow humans’ foibles. Still largely perplexed by the emotions and emotional behavior of most his fellow humans, he is even tempered and analytical. However he works to understand and accommodate the emotions of others. He says what he means and expects others to do the same.
He is never mean or ugly.
My son and his journey to adulthood is his own. Truthfully, although it wasn’t that way through grade school, his autism now is more livable and less disruptive than that experienced by many others with autism. He and we also have been blessed by the support of an amazing team of medical, educational and childcare professionals and surrounded by a welcoming and supportive group of friends and community without whom he wouldn’t be the man he is becoming. I always wonder what my son’s journey and prospects would have been without this support and what others can be with it.
A wise advisor told me early on this indispensable advice: “You and his teachers must first visit his world so he can find his way into yours.”
Experience proves this true for my son and virtually everyone I encounter.
Stop for a minute to learn from your autistic friends the parts of the world you’re missing. Be open to and accepting of their world experience. In the process, we will all get closer to understanding each other and working well together!
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About The Author
Recognized by LexisNexis® Martindale-Hubbell® as a “AV-Preeminent” (Top 1%/ the highest) and “Top Rated Lawyer,” with special recognition as “LEGAL LEADER™ Texas Top Rated Lawyer” in Health Care Law and Labor and Employment Law; as among the “Best Lawyers In Dallas” for her work in the fields of “Health Care,” “Labor & Employment,” “Tax: Erisa & Employee Benefits” and “Business and Commercial Law” by D Magazine, the author of this update is widely known for her 29 plus years’ of work in health care, health benefit, health policy and regulatory affairs and other health industry concerns as a practicing attorney and management consultant, thought leader, author, public policy advocate and lecturer.
Throughout her adult life and nearly 30-year legal career, Ms. Stamer’s legal, management and governmental affairs work has focused on helping health industry, health benefit and other organizations and their management use the law, performance and risk management tools and process to manage people, performance, quality, compliance, operations and risk. Highly valued for her rare ability to find pragmatic client-centric solutions by combining her detailed legal and operational knowledge and experience with her talent for creative problem-solving, Ms. Stamer supports these organizations and their leaders on both a real-time, “on demand” basis as well as outsourced operations or special counsel on an interim, special project, or ongoing basis with strategic planning and product and services development and innovation; workforce and operations management, crisis preparedness and response as well as to prevent, stabilize and cleanup legal and operational crises large and small that arise in the course of operations.
Past Chair of the ABA Managed Care & Insurance Interest Group and, a Fellow in the American College of Employee Benefit Counsel, the American Bar Foundation and the Texas Bar Foundation, Ms. Stamer also has extensive health care reimbursement and insurance experience advising and defending health care providers, payers, and others about Medicare, Medicaid, Medicare and Medicaid Advantage, Tri-Care, self-insured group, association, individual and group and other health benefit programs and coverages including but not limited to advising public and private payers about coverage and program design and documentation, advising and defending providers, payers and systems and billing services entities about systems and process design, audits, and other processes; provider credentialing, and contracting; providers and payer billing, reimbursement, claims audits, denials and appeals, coverage coordination, reporting, direct contracting, False Claims Act, Medicare & Medicaid, ERISA, state Prompt Pay, out-of-network and other nonpar insured, and other health care claims, prepayment, post-payment and other coverage, claims denials, appeals, billing and fraud investigations and actions and other reimbursement and payment related investigation, enforcement, litigation and actions. Heavily involved in health care and health information technology, data and related process and systems development, policy and operations innovation and a Scribe for ABA JCEB annual agency meeting with OCR for many years who has authored numerous highly-regarded works and training programs on HIPAA and other data security, privacy and use, Ms. Stamer also is widely recognized for her extensive work and leadership on leading edge health care and benefit policy and operational issues including meaningful use and EMR, billing and reimbursement, quality measurement and reimbursement, HIPAA, FACTA, PCI, trade secret, physician and other medical confidentiality and privacy, federal and state data security and data breach and other information privacy and data security rules and many other concerns.
A former lead consultant to the Government of Bolivia on its Pension Privatization Project with extensive domestic and international public policy and governmental and regulatory affairs experience, Ms. Stamer also is widely recognized for regulatory and policy work, advocacy and outreach on healthcare, education, aging, disability, savings and retirement, workforce, ethics, and other policies. Throughout her adult life and career, Ms. Stamer has provided thought leadership; policy and program design, statutory and regulatory development design and analysis; drafted legislation, proposed regulations and other guidance, position statements and briefs, comments and other critical policy documents; advised, assisted and represented health care providers, health plans and insurers, employers, professional. and trade associations, community and government leaders and others on health care, health, pension and retirement, workers’ compensation, Social Security and other benefit, insurance and financial services, tax, workforce, aging and disability, immigration, privacy and data security and a host of other international and domestic federal, state and local public policy and regulatory reforms through her involvement and participation in numerous client engagements, founder and Executive Director of the Coalition for Responsible Health Policy and its PROJECT COPE: the Coalition on Patient Empowerment, adviser to the National Physicians Congress for Healthcare Policy, leadership involvement with the US-Mexico Chamber of Commerce, the Texas Association of Business, the ABA JCEB, Health Law, RPTE, Tax, Labor, TIPS, International Life Sciences, and other Sections and Committees, SHRM Governmental Affairs Committee and a host of other involvements and activities. The American Bar Association (ABA) International Section Life Sciences Committee Vice Chair, a Scribe for the ABA Joint Committee on Employee Benefits (JCEB) Annual OCR Agency Meeting, former Vice President of the North Texas Health Care Compliance Professionals Association, past Chair of the ABA Health Law Section Managed Care & Insurance Section, past ABA JCEB Council Representative, past Board President of Richardson Development Center (now Warren Center) for Children Early Childhood Intervention Agency, past North Texas United Way Long Range Planning Committee Member, and past Board Member and Compliance Chair of the National Kidney Foundation of North Texas, Ms. Stamer has worked closely with a diverse range of health care providers, managed care, insurance and other health care payers, quality assurance, credentialing, technical, research, public and private social and community organizations, foreign and US federal, state and local agencies and others on health care, aging, disability, savings and other process improvement, change management; regulatory affairs and public policy and other concerns.
A Fellow in the American College of Employee Benefit Counsel, the American Bar Foundation and the Texas Bar Foundation, Ms. Stamer also shares her thought leadership, experience and advocacy on these and other related concerns by her service in the leadership of the Solutions Law Press, Inc. Coalition for Responsible Health Policy, its PROJECT COPE: Coalition on Patient Empowerment, and a broad range of other professional and civic organizations including North Texas Healthcare Compliance Association, a founding Board Member and past President of the Alliance for Healthcare Excellence, past Board Member and Board Compliance Committee Chair for the National Kidney Foundation of North Texas; former Board President of the early childhood development intervention agency, The Richardson Development Center for Children (now Warren Center For Children); current Vice Chair of the ABA Tort & Insurance Practice Section Employee Benefits Committee, current Vice Chair of Policy for the Life Sciences Committee of the ABA International Section, Past Chair of the ABA Health Law Section Managed Care & Insurance Section, a current Defined Contribution Plan Committee Co-Chair, former Group Chair and Co-Chair of the ABA RPTE Section Employee Benefits Group, past Representative and chair of various committees of ABA Joint Committee on Employee Benefits; a ABA Health Law Coordinating Council representative, former Coordinator and a Vice-Chair of the Gulf Coast TEGE Council TE Division, past Chair of the Dallas Bar Association Employee Benefits & Executive Compensation Committee, a former member of the Board of Directors of the Southwest Benefits Association and others.
Recognized for her pragmatic and insightful thoughleadership, Ms. Stamer also publishes and speaks extensively on health and managed care industry regulatory, staffing and human resources, compensation and benefits, technology, public policy, reimbursement and other operations and risk management concerns for the American Bar Association, ALI-ABA, American Health Lawyers, Society of Human Resources Professionals, the Southwest Benefits Association, the Society of Employee Benefits Administrators, the American Law Institute, Lexis-Nexis, Atlantic Information Services, The Bureau of National Affairs (BNA), InsuranceThoughtLeaders.com, Benefits Magazine, Employee Benefit News, Texas CEO Magazine, HealthLeaders, the HCCA, ISSA, HIMSS, Modern Healthcare, Managed Healthcare, Institute of Internal Auditors, Society of CPAs, Business Insurance, Employee Benefits News, World At Work, Benefits Magazine, the Wall Street Journal, the Dallas Morning News, the Dallas Business Journal, the Houston Business Journal, and many other symposia and publications. She also has served as an Editorial Advisory Board Member for human resources, employee benefit and other management focused publications of BNA, HR.com, Employee Benefit News, Insurance Thought Leadership and many other prominent publications and speaks and conducts training for a broad range of professional organizations.. Health Care Compliance Association, Atlantic Information Service, and others.
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