It Takes a Team

By Bernard A. Krooks, Past President, Special Needs Alliance

Dignity, security and personal fulfillment are essential to the quality of life that all individuals with intellectual and developmental disabilities deserve. But they face a tangled social, political and legal landscape, and it often requires the coordinated efforts of relatives, friends and special needs professionals to help them map their way.

Family members, of course, play a central role, offering emotional support and encouragement, planning for long-term financial security and frequently acting as primary caregivers. For some, they’re an individual’s most effective advocates, reinforcing their point of view with intimate understanding of a loved one’s needs.

Yet all too often, dreams face constraints.  Landmark legislation has recognized the civil rights of individuals with disabilities, and great strides have been made regarding social inclusion. But these hard-won victories are incomplete, and budget debates at all levels of government threaten even the programs already in place. Self-advocates, families and their supporters –advocacy organizations such as The Arc, the Consortium for Citizens with Disabilities, the Special Needs Alliance and many others–must continue their unstinting demand that people with disabilities have the same opportunities as others to lead self-directed, satisfying lives.

Then there are the special ed teachers, speech therapists, psychologists, career counselors and many other service providers who assist those with disabilities on a daily basis to realize their potential. These committed professionals challenge, guide and applaud those they serve in order to build the skills needed for self-reliance. They help provide a foundation for the aspirations of individuals and their families.

As a child with disabilities matures, families must often balance concern for their safety and well-being with a desire to encourage their independence. In most states, individuals are considered legal adults at 18, with full responsibility for their own financial, legal and healthcare choices. Special needs attorneys are sensitive to these deeply personal matters and can guide parents in their deliberations concerning various forms of guardianship, power of attorney and health care proxy, as necessary, and in ways to optimize self-direction.

Then there are financial considerations. The specialized care required by some individuals with developmental disabilities is costly. While many expenses are covered by public programs, there are gaps, and qualifying is usually means-based.  Families, financial advisors and special needs attorneys should begin partnering early to evaluate an individual’s long-term needs, eligibility for benefits, the amount of money necessary to make up the difference between what is covered and what is not, and how to protect those funds while receiving government assistance.

Self-advocates are increasingly shaping their own destinies. It takes a team to assist them with the tools to succeed.

The Special Needs Alliance (SNA), a national non-profit comprised of attorneys who assist individuals with special needs, their families and the professionals who serve them, has formed a strategic partnership with The Arc.  The relationship is intended to facilitate collaboration at the local, state and national level on issues such as providing educational resources to families, building public awareness, and advocating for legislative and regulatory change. 

Reflecting on Wings for Autism

By Sylvia Fuerstenberg, Executive Director of The Arc of King County.

Wings for Autism event registration

Wings for Autism took flight at SeaTac Airport, and it was a great success. I am so grateful for all of the families who took part in our launch, as well as the many volunteers who made the event a success. The commitment of The Port of Seattle and Alaska Airline is phenomenal. They are single minded in making travel inclusive for everyone. The TSA even made going through security a positive experience. When that is true, you know that everyone was committed! Although I could say a lot more about the event, I would rather let some of the parents and event partners tell you about their experience.

From Lisa Okada Visitacion, Mom:

“Phenomenal event. Increasing awareness and understanding. Building confidence and skills. Giving families hope. These are just a few thoughts I had about the Wings for Autism event yesterday. Kelli (and all the other participants) did such an amazing job. Many, many thanks to all the volunteers (there were many!) and staff at The Arc of King County, Alaska Airlines, TSA and the Port of Seattle. We will remember this experience forever and will most likely be flying Alaska Airlines when we travel by air. (I wonder if we can we take along a few of the volunteers, too?!?!)”

Wings for Autism pilot & child

From Jacki Jones Chase, Mom:

 “We got in the plane and they taxied it all over the airport runways. Then they stopped and let the kids, and adults, go check out the cockpit and bathrooms – they really put on an awesome event for kids with Autism!”

Wings for Autism pilots

From Jennifer Wade, Mom:

 “From the moment my family arrived at the airport, there was a friendly, smiling person with a Wings of Autism T-shirt on, guiding us along our way.   Every step of the process we were assured, explained the process and every attempt was made to ensure we were comfortable,  our questions answered and made to feel at ease in what is potentially a stressful situation for any parent /caregiver, taking a child on a flight. A special thanks to our pilot Mark who walked thru the entire waiting area talking to each family, meeting the kids, shaking hands and relaying his own personal story and why the event was so important to him. Having a child with special needs I’ve learned that it’s the support of family, friends, specialist and complete strangers willing to share their own insight and compassion that keeps our momentum going onwards on the path of progress and potential.”

Wings for Autism participant

Ray Prentice, Partner at Alaska Airlines:

“I didn’t realize until this event that a little bit of additional training and guidance, combined with our great caring employees, could totally change people’s lives. Speaking on behalf of Alaska Airlines’ volunteers I can openly share that we had a blast.  We felt a close connection with everyone at the event.”

Wings for Autism participants 2

From Sue Hanson Smith, Partner at The Port of Seattle who traveled to Boston to learn about the event and inspired us to bring it to Seattle:

“Thank you for all for pulling off a spectacular, in some cases, a life-changing event. I am so proud to be part of such a well-organized, energetic, and fun-loving team of professionals! The Arc of King County rocks! Without you we would not have had the families and the special kids to learn from.

Without Alaska Airlines we wouldn’t have been able to provide the “life-changing” experience. Thank you so much for your flexibility and your generosity in providing the airplane experience and memories to these selected families and their children. The t-shirts were the best!

And…TSA was outstanding in their ability to provide an easy, pleasant experience to the families and their children. From all the comments I heard, the first Wings for Autism at Seattle-Tacoma International Airport was a great success and it’s because of all of you.”

Wings for Autism participants

Sexual Abuse of People with I/DD a Global Scandal

By Theresa Fears, MSW. Theresa has been working in the field of sexual abuse prevention of people with intellectual and developmental disabilities for 13 years. She created the Partnership 4 Safety program at The Arc of Spokane. The Arc has recently launched a National Center on Criminal Justice and Disability to address some of the issues highlighted by Theresa and provide resources for people with I/DD who are in contact with the criminal justice system.

rate of sexual abuse graphicSexual abuse of people with intellectual and developmental disabilities (I/DD) is a huge problem.

Children and teens with I/DD are three to four times more likely to be sexually abused than are those without disabilities. Some researchers estimate that the lifetime rate of abuse of adults with disabilities is as high as 90 percent.

Childhood sexual assault has lifelong consequences. Childhood sexual assault has been connected to depression, posttraumatic stress disorder and an increased risk of sexual abuse in adulthood.

Adult victims of sexual assault may experience the trauma of not being believed or of being blamed for the attack and risking displacement from their homes or residences. Sadly, many victims do not receive therapy to help deal with the trauma of an attack. In a recent study, only 33 percent of victims received therapy after their sexual assaults. There are many false beliefs about those who offend. The most common is that they are strangers, but according to a number of authors, between 97 percent and 99 percent of assaults were committed by someone the victim already knew. Approximately 44 percent of the perpetrators were connected because of the victim’s disability. Perpetrators may include special education teachers, bus drivers, caregivers and other support personnel.

Research on risk factors for sexual assault of people with I/DD has been consistent over the last 20 years. The frequently reported risk factors are:

  • Lack of education about sexual development  and anatomy
  • Lack of information on abuse awareness
  • Lack of healthy relationship education
  • Lack of social norm education
  • Lack of age-appropriate friends

If sexual assault is a problem, then what is the solution? Prevention! There are three levels of prevention according to the Centers for Disease Control (CDC), primary, secondary and tertiary. Primary prevention takes place before harm has occurred; its purpose is to stop sexual abuse from happening.

Secondary prevention happens immediately after abuse has occurred; its purpose is to prevent it from happening again. And lastly, tertiary prevention is a response to the harm of sexual abuse — generally therapy.

The CDC has recommendations for creating prevention programming based on years of evaluating what works and what doesn’t.

Providing prevention programming across the lifespan would require offering education to parents of people with I/DD and, children, teens and adults with I/DD.

The logical place to begin primary prevention therefore is with the caregivers of young children — the parents.

A solid parent education program should have three goals:

  • To  increase parents’ understating of  the rates of abuse and risk factors
  • To explain parental obligation to support children’s development as sexual beings and
  • To teach parents how to identify and challenge inappropriate or dangerous behaviors of any adult in a child’s life.

How can you begin a prevention program at your agency? First, look to the programs you already have for a natural fit. It would be easier to add sexual abuse prevention training to a parent education, information, support and advocacy program than it would to an employment program for example.

A good free parent education program is the “Where We Live” curriculum created by Pittsburg Action Against Rape (www.pcar.org/special-initiative). Although it is not written for children with I/DD, it can be easily modified. I would be happy to share this information with Apostrophe readers who are interested in beginning parent education in their community.

http://www.cdc.gov/traumaticbraininjury/pdf/VictimizationTBI_Fact%20Sheet4Pros-a.pdf

http://en.wikipedia.org/wiki/Sexual_abuse_of_people_with_developmental_disabilities#cite_note-5

This article first appeared in the Winter 2013 issue of Apostrophe Magazine (October-December).

Report Highlights Severe Abuse of People with Disabilities Abroad

The International Task Force of the Consortium for Citizens with Disabilities (CCD) today released a report that highlights examples of the severe abuse and neglect of individuals with disabilities around the World.  The report, Neglected and Abused Abroad: A Look at the Severe Mistreatment of Individuals with Disabilities Around the World and How the U.S. Can Help, highlights just a few examples of the horrible treatment, abuse, and discrimination faced by individuals with a variety of disabilities in other countries. 

Some examples of abuse include:

  • In Ghana, people with intellectual and mental health disabilities suffer severe abuse in psychiatric institutions and “healing centers.”  Thousands of people are forced to live in these institutions, often against their will and with little possibility of challenging their confinement;
  • In Kenya, a 10-year old girl who is deaf was raped but faces barriers in the justice system because of her disability;
  • In Mexico, children with intellectual disabilities were  abandoned at a private facility without any documentation on their diagnosis or even their names;
  • Children in Paraguay were found in cells with walls smeared with excrement and reeking of urine; and
  • In Russia, people with physical disabilities are prisoners in their own homes because of the widespread physical inaccessibility of Russian cities.

“Our country has an obligation to share our knowledge of how to ensure  children and adults with disabilities live as full citizens, with dignity and independence,” said CCD Chair, Katy Neas of Easter Seals.  “It is imperative that the United States show our leadership by ratifying the Convention on the Rights of Persons with Disabilities this fall.”

The full report is available at: http://www.c-c-d.org/fichiers/CCD_Inter_TF-Neglected_and_Abused_Abroad.pdf

The CCD International Task Force calls on the United States Senate to ratify the Convention on the Rights of Persons with Disabilities – the CRPD.  Through ratification of this important treaty, the United States will be in a much better position under international law to influence, train, assist, and if necessary use diplomatic pressure to work towards the equal rights and treatment of individuals with disabilities across the world – rights which have existed in the United States for years.

CCD is a coalition of over 100 national consumer, advocacy, provider and professional organizations working together to advocate for national public policy that ensures the self-determination, independence, empowerment, integration and inclusion of children and adults with disabilities in all aspects of society.  For years, the coalition and its members have been calling on the U.S. to ratify the CRPD protecting the rights and dignity of persons with disabilities.  CCD calls on the entire U.S. Senate to quickly provide its advice and consent to the treaty and restore the United States to a global leadership position on disability and human rights. 

How Can the Cloud Help Your Chapter?

By Mike Holihan, MediSked, Guest Blogger

As many provider agencies adopt cloud based software solutions to manage their records, let’s examine the benefits to the people who are receiving the care and service provided to them by these agencies. How does a hosted software solution (aka cloud based; meaning it is accessed through the internet) help organizations like chapters of The Arc provide the highest quality of care to the individuals we serve?  Can the cloud make the lives of people better?  We believe it can.  Below is a list of examples of how cloud based software for providers can give crucial support staff access to information instantly, wherever they are.  The cloud takes records out the filing cabinets or binders and puts them at the point of care where they belong.  Let’s look at some examples.

  • Time searching for records: With a cloud based solution, client records are centralized and new information regarding them continually gets added to the same spot.  So you always know where to look for any type of information on an individual. Think about how agencies traditionally store information today. How long would it take a provider to find out a client’s Medicaid # or emergency contact?  Sometimes access to client records is urgent and time searching for that information in a paper storage system could be crucial. Time searching for records is a big improvement when you move to the cloud.
  • Special instructions: Special instructions are a lot more valuable when they’re at your fingertips.  Whether it’s enhanced protective oversight or allergies, when a provider organization’s staff sees them right away, they can avoid negligence and improper care.  So let’s say direct care staff is on a picnic or at the park with the people they serve and someone gets stung by a bee.  The employee could pull out their smartphone and access the client record to see if they have a bee sting allergy. If they do, there could be instructions on what to do or the employee can react quicker in calling for medical care. If they see that they don’t have an allergy, they can react in a more appropriate manner. It’s all about giving staff access to information that will help them make better decisions in case of an emergency.
  • Medication administration: Rather than waiting until the end of the week to find out if a medication has been missed or administered in error, the cloud allows for real-time records. The cloud allows an agency to become more proactive instead of being reactive. This is the benefit of “real-time” records.  Real time refers the ability to see when changes are made to a record as soon as an employee makes them in the system.  Because the system is accessed through the internet or cloud, real time records give the provider, much more power in helping provide better quality of care because you can manage things that are happening as they are happening.  As opposed to be reactive and trying to correct or fix something long after the fact.
  • Improved communications: Providers can talk to each other in real-time to inform other staff of any issues or concerns, rather than allowing those issues to grow.  A good example is, change in health, behavior, demographics, or natural supports being circulated immediately. Think about how agencies traditionally work.  Departments are siloed, meaning that one department rarely talks to another department. The cloud breaks down department walls and allows better communication around what’s really important, an individual’s care.
  • Improved outcomes: When data is available immediately, it can be used for trending and making better clinical decisions.  When it exists only in a notebook, it is never charted or tracked.  A good example: seizures, weight, behaviors, falls, choking, blood glucose, and more. If ignored, these predictive variables could be missed and an individual could end up in the hospital, where they are more likely to contract other illnesses.  Again it’s about being proactive and the cloud allows that to happen!

For more information on how the cloud helps chapters of The Arc improve the quality of care, get a free e-report.

Brazilian Educators visit The Arc Baton Rouge Children’s Services

By Barry Meyer, Executive Director of The Arc Baton RougeThe Arc Baton Rouge and Brazil exchange participants

Earlier this month, we were thrilled to welcome five visiting educators from Brazil to The Arc Baton Rouge Children’s Services. The visitors came to Louisiana through a program of the U.S. Department of State. The guests joined us from five states across Brazil and included four Secretaries of their state’s Department of Education and one Deputy Secretary.

We were selected because our programs help create inclusive preschool, child care and educational opportunities for children with disabilities. One of the State Department’s specific objectives was to “Expose participants to the ways in which private sector entities are engaging with public sector partners in support of educational programs.”

Between Heidi Shapiro, Children’s Services Social Worker, two interpreters, and me, we presented four programs of The Arc Baton Rouge Children’s Services:

  • Early Childhood Inclusive Program
  • The Preschool and Child Care Training and Technical Assistance Project
  • Parent Supports and
  • School Age Supports

Using a multi-platform approach including PowerPoint presentations, multilingual handouts, informal discussion, and a Q and A session, the guests learned how The Arc Children’s Services staff works with public school administrators, principals, and teachers to help them restructure programs. Additionally, they learned how our staff serves as mentors and coaches to support teachers to include children with disabilities in regular classes. They also saw how a similar training and on-going mentor/coaching approach worked in preschool and child care settings.

In the end, the participants understood that training parents and care givers to be their child’s strongest advocate was critical to ensuring success in transitioning to public school systems. They also left with the knowledge that an organization that is not a direct stakeholder, such as The Arc, can provide that training to individual parents, combine it with mentor/coaching of  teachers and create opportunities for individual children as well as real systems change.

I feel that The Arc Baton Rouge was very fortunate to have this opportunity to demonstrate to our Brazilian guests how we at the grass roots advocacy and service level incorporate our core values in a very real world way!

The five education officials concluded their visit with a brief tour and overview of The Arc Early Head Start program. The visiting Brazilian educators were:

 

Ms. Hortencia Maria Pereira ARAUJO

Deputy State Secretary of Education, State of Sergipe

 

Ms. Maria Izolda Cela De Arruda COELHO

Secretary of Education, State of Ceará

 

Ms. Maria Nilene Badeca Da COSTA

Secretary of Education, State of Mato Grosso do Sul

 

Mr. Claudio Cavalcanti RIBEIRO

Secretary of Education, State of Pará

 

Dr. Herman Jacobus Cornelis VOORWALD

Secretary of Education, São Paulo State

Where Have You Been, Barbara Walters?

Barbara WaltersBy Mohan Mehra, Immediate Past President, The Arc of the United States Board of Directors, and Brian’s dad. Brian is a young man with Down syndrome.

Last week, Barbara Walters used her platform on “The View” to defend comedian Bill Maher when he used the “R” word to describe Sarah Palin’s five year old son, Trig, who has Down syndrome.  You can watch the clip on YouTube.

“I don’t think he intended to be mean spirited,” said Ms. Walters. Of course he did. Hiding behind jokes often becomes a form of bullying. We see it in schools, on the playing field, and in the media when celebrities who have a large platform like Mr. Maher are looking for a laugh or attention.

To excuse Maher due to possible “ignorance of the language” is unacceptable. He is a public figure, seeks the limelight in his public and private actions, and pleading ignorance does not fit his outspoken style. Where have you been, Bill Maher and Barbara Walters?

Historically, the “R” word was a clinical term used to describe people with an intellectual disability. Today, society uses it as an insult or to degrade people with intellectual disabilities. A recent survey of youth age 8-18 done by Special Olympics and the University of Massachusetts showed that 63% said that they felt bad for the person being picked on and only 9% of the youth said that they laughed or did not care. Where have you been, Barbara Walters?

In 2010, both houses of Congress unanimously passed, and the President signed Rosa’s Law, a bill that removes the “R” word from all federal health, education and labor policy and replaces it with “intellectual disability.” Nick, Rosa’s eleven year old brother said during the hearings, “What you call my sister is how you will treat her…. It invites taunting, stigma and bullying.” Words are mere vessels for meaning. Where have you been, Barbara Walters?

In our culture, the media enjoys a special status. With over 3 million viewers of “The View”, and a large following on social media, Ms. Walters has a large platform to inform and educate, in addition to entertain. It would indeed be fitting that in the memory of her sister, Jackie, who had an intellectual disability, she calls out such use of the “R’” word as hurtful and insulting to people with intellectual disabilities and their families.

Highlighting the Talent of Self-Advocates in Evansville, Indiana

By Denise Seibert, Director of Development
Evansville Arc

Last month, Evansville Arc was proud to partner with The Arts Council of Southwestern Indiana to host our first ever art show in The Arts Council’s Bower-Suhrheinrich Foundation Gallery located in downtown Evansville, Indiana.  The show opened on May 10 and runs through June 12.  The show features fabric mosaics that have been completed by individuals served by our chapter, along with volunteers and staff of Evansville Arc.

The project began in 2009 as a one-time project to engage community volunteers with the clients served in our Adult Day Services program.  However, the project was such a success that we have continued work on the mosaics thanks to the help of local vendors, such as fabric stores and interior design professionals, who generously donate wall paper samples, fabric samples, scrap materials and other items.

I believe our President,  Deidra R. Conner, described the project best when she said “This project truly demonstrates that the love of art is universal and that everyone – regardless of physical or cognitive abilities – has talents or gifts that should be shared with others.”

Description of pieces

Freedom of Religion“Freedom of Religion.”

This mosaic represents the right for all people to practice their religion or beliefs. Seclusion of individuals with disabilities in the past and societal attitudes impeded their ability to express and practice their religion or beliefs. Many individuals with intellectual and/or developmental disabilities indicate that being able to participate in worship services of their choosing greatly enhances their lives.

Beverly attended church with her sister before her sister passed away. With supports, Beverly is now able to attend religious services. ““I’m happy to go to church.  I haven’t been since my sister died.  I really miss the music & want to sing.” – Beverly W.


Freedom of Expression“Freedom of Expression.”

This mosaic represents the right to speak openly and fully without fear of undue criticism or punishment. Too often, persons with disabilities have not been given the opportunity to speak for themselves. Due to social and cultural attitudes, their opinions were not always given the same value as those without disabilities and their efforts to speak up were stifled. Individuals with disabilities have much to say and are encouraged to speak up about issues that impact their lives and their community.

“I am able to speak my mind and follow what’s in my heart”- Matt B


Right to Access“Right to Access”

This mosaic represents the right of freedom of movement in the community. Freedom of movement is two-fold: being allowed to be a part of one’s community and being able to access it. In the past, persons with intellectual and/or developmental disabilities were encouraged to be placed in institutions and hidden from the rest of society. They were not able to attend public schools and take part in the daily activities such as employment, shopping, using recreational facilities, etc.  Prior to the Americans with Disabilities Act (ADA) even if they were allowed to participate, many individuals with disabilities were limited due to physical or other barriers. Today we are seeing more and more individuals with disabilities contributing to their communities as employees, volunteers and taxpayers as they are given opportunities and reasonable accommodations.

“The best thing about getting my job is that I’m earning my own money and I now have responsibilities. Having responsibilities is the important thing, like showing up for work and being on time.” – Nathan B.

Raising Awareness of Williams Syndrome

by Mike McFall, Williams Syndrome Association

In 2010, the Williams Syndrome Association designated the 1st full week in May as “Williams Syndrome Awareness Week.”  In the years since, the number of awareness events for Williams syndrome held annually has grown tremendously, and this year, Congressman Jim Moran (D-VA) will introduce a resolution in Congress (H-Res 194) in recognition of the entire month of May as Williams syndrome Awareness month.  What do you know about Williams syndrome?

Williams syndrome is a genetic condition that is present at birth and can affect anyone.  It is characterized by medical and cognitive problems, including cardiovascular disease, developmental delays, and learning disabilities.  These occur side by side with striking verbal abilities, highly social personalities and an affinity for music.

WS affects 1 in 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States. It is known to occur equally in both males and females and in every culture.

Unlike disorders that can make connecting with your child difficult, children with WS tend to be social, friendly and endearing.  Parents often say the joy and perspective a child with WS brings into their lives had been unimaginable.

But there are major struggles as well.  Many babies have life-threatening cardiovascular problems. Children with WS need costly and ongoing medical care, and early interventions (such as speech, physical and occupational therapy) that may not be covered by insurance or state funding.  As they grow, they struggle with things like spatial relations, numbers, and abstract reasoning, which can make daily tasks a challenge. The majority of adults with WS need supportive housing to live to their fullest potential.  Many adults with WS contribute to their communities as volunteers or paid employees working at senior homes and libraries or as store greeters or veterinary aides, but few are able to work a “full-time” job, or earn a large enough salary to be self-sustaining.

Opportunities for social interaction are vitally important as well. As people with WS mature – beyond the structure of school and family activities – they often experience intense isolation which can lead to depression and increased anxiety.  Individuals are extremely sociable and experience the normal need to connect with others; however people with Williams syndrome often do not process nuanced social cues and this makes it difficult to form lasting relationships.

Common features of Williams syndrome include:

  • Cardiovascular Disorders
  • Kidney & Gastro-intestinal Disorders
  • Similar Facial Features
  • Developmental Delays
  • Learning Disabilities
  • Hypercalcemia (elevated blood calcium levels)
  • Anxiety
  • Low birth-weight / slow weight gain
  • Feeding problems
  • Dental abnormalities
  • Hernias
  • Hyperacusis (sensitive hearing)
  • Musculoskeletal problems

This May, thousands of children and adults are expected to join the Williams Syndrome Association (WSA) to raise awareness for Williams syndrome (WS) by holding events including nearly 50 walks in cities across the U.S. including New York, St. Louis, Detroit, San Diego and Houston. Get a complete list of events and find out more about the efforts to raise awareness at walk4williams.org. And, you can find out more about Williams syndrome at williams-syndrome.org.

My Definition of Autism

Andrew ReinhardtApril is Autism Awareness Month and The Arc and Autism NOW are taking this opportunity to ask individuals who identify as being on the autism spectrum to answer this question: “What is your definition of autism?” Andrew Reinhardt is working on a Master’s degree in physical science and has a diagnosis of Asperger’s syndrome. Below is his personal definition of autism. Follow the conversation this month online using #autismaware

By Andrew Reinhardt, Guest Blogger

Being on the autism spectrum to me was at one point in time a defining characteristic of who I am.  It is not anymore.  I’ve largely grown out of needing to define myself in such terms.  I am a very active individual, albeit not as active socially as I would like to be, but in terms of academics, work and family, I am very happy with my life and define who I am based on these parameters, and others.  This has some advantages, since I’ve seen time and again that having a disability, any disability, is not typically smiled upon in the hiring process or beyond in this country.  I’ve done best and even have tended to be hired more often when I learned to shut up and only open my mouth about having Asperger’s when it’s absolutely necessary.  Since I can pass for an individual who is not on the spectrum, at least at this point in my life, I find that it is better to not bring up such issues at all and play the part of so-called normalcy.

But still, Asperger’s still affects me in highly negative ways, though it affected me in worse ways historically.  I specifically avoid shopping at malls, or anywhere for that matter unless its grocery shopping.  I prefer to avoid eating out to ordering out.  These are habits born out of a general social anxiety, as well as several issues such as what to do with eye contact in crowds, the noise levels, the lighting, so on and so forth.  As bad as it is now, it was worse to the point of breaking out in hives during a full blown panic attack before.

This is progress, even if it doesn’t seem like it at times.  Historically, I’ve faced several problems worse than this, such as a severe fear of, and sensory problems with, insects, that caused me to run away from them to the point of running in front of cars at times.  I also was self-injurious at times when I thought I did something particularly bad, though in hindsight I’m not sure I’ve ever done anything particularly bad in my life.  All that said, though being on the spectrum has been a great bane to me throughout the years, it also has provided some good things to my life, for instance my mathematical skills, my analytical skills, and the drive to be more than I am today, the last of which is probably the most important because I’ve met individuals who have the skill, but lack the drive to do anything with it.  I contend that because of my life on the spectrum, particularly the hardships it’s caused, I’ve done better as an adult than I otherwise would have.