College students and adults in the workforce who were not diagnosed when younger often find themselves struggling in adulthood. Many who were previously treated have stopped taking ADHD medication, hoping to outgrow the symptoms after puberty, as doctors once believed. They are often surprised when they begin to have similar problems as adults. Frequently these adults need to be officially diagnosed (again) and treated for adult ADHD to keep their jobs or save their grades.

Russell Barkley and others have reported 65-80% of kids with ADHD continue to have symptoms as adults. Sadly, only 10% or so receive treatment; gratefully, that seems to be changing. More recent research on adult ADHD supports the diagnosis, hence the change in diagnostic criteria. Without treatment the outcome is bleak for many adolescents and adults.

ADHD and Employment

The ADHD Awareness Coalition, spearheaded by CHADD, ADHD Coaches Organization (ACO), ADDitude magazine and Attention Deficit Disorder Association (ADDA), conducted a non-scientific survey last year and found disheartening results. Over 2,000 adults participated in the survey. 60 percent said they had lost a job due to ADHD symptoms. “More than 36 percent reported having 4 or more jobs in the past 10 years, and 6.5 percent responded they have had 10 or more jobs within the past 10 years.”

Clearly, finding the right job and career path to fit your specific needs is critical to success. Ask for accommodations; sometimes even minor changes can make the difference between success and failure in college or the workplace. As one who was too ashamed to ask for ‘special treatment’ (allegedly, because I didn’t want anyone else to ‘think’ I had problems), I can tell you it’s best to address your denial and come to terms with reality sooner, rather than later.

Coming to Terms with Invisible Conditions

Coming to terms with any kind of disability or difference is an adjustment. It requires honesty, courage and letting go of who you thought you were. Counseling may be helpful to work through the grief and other issues related to the adjustment period. It took over 50 years for me to accept that my ADHD is truly disabling without the right support and accommodations.

I have chronicled the ‘most’ major event that triggered my coming to terms with ADHD in a free ebook if you are interested in more details. There are also links to information about the legal protection, accommodations, advocacy and other relevant information in the article Adult ADHD and Self Advocacy:10 Tips for Facing Giants.

How Do I know if I have ADHD?

Not everyone who is easily distracted, disorganized or disruptive has ADHD. Likewise, many adults who have ADHD are undiagnosed or misdiagnosed. I was treated for anxiety for two years before my therapist realized that I had ADHD in the early 90s. Numerous confounding variables make it difficult to diagnose this disorder, ie., over half of adults with ADHD also have anxiety, depression and sleep disorders.

Here are some red flags and nuances to look for:

• ADHD is genetic. There is up to an 80% chance that children will have the disorder if a parent has ADHD. Many adults don’t realize they have ADHD until a child in the family is diagnosed.

• ADHD begins in childhood unless the symptoms are caused by a head injury or other environmental factor. In most cases, you are born with ADHD or not. Some believe that many babies who are oxygen deprived at birth and/or born with forceps may develop learning disabilities, ADHD or other mental health problems. The same is true for many babies who are exposed to alcohol or other drugs (including tobacco) before birth, and toxins such as lead paint after birth. Head injuries can result from abuse, accidents such as falling and other seemingly minor insults to the brain. All of these and other environmental factors are believed to cause brain damage, which often shows up as problems with learning, attention or mental health, though it may go undetected until a child enters school.

• ADHD is a misnomer. People assume that an attention deficit means that people are unable to focus at all. Most people with ADHD can be very focused or ‘hyper-focused’ on things they find stimulating, ie., video games, movies, music, reading, typing, etc. When someone is hyper-focused, he or she appears to block out almost everything around them and have difficulty transitioning from one task to another.

When not stimulated externally, the pre-frontal cortex of the ADHD brain is seeking stimulation. It is believed that the neurons are not firing fast enough, hence the need for external stimulation. I heard two different doctors describe ADHD as caused by a ‘sleepy brain’ that literally causes people to shift and move around to stay awake. The brain can be stimulated by medication, exercise, mindfulness or other meditation, fidgeting, chewing gum, knitting or crocheting, playing an instrument (particularly drums) or other stimulating activity. Different things work for different people.

• There are three types of ADHD - Hyperactive (the more obvious kind), Inattentive (dreamy, disorganized, procrastination, seemingly unmotivated and often mistaken for laziness by outsiders) and Combined, a combination of hyperactivity and inattention. Since these manifest very differently, identifying the less obvious Inattentive Type can be difficult. Those who have symptoms of both (me!) seem to bounce from one to the other. Hyperactivity is more easily recognized in children. In adults, it appears more as restlessness, impatience, fidgeting or wiggling.

• Keep in mind, ADHD symptoms may be mild, moderate or severe. The severely hyperactive person, who is always late, harried and in a hurry every day looks very different from a mildly or moderately hyperactive person, who bounces his/her foot or taps her fingers all day. An mildly inattentive person who can’t seem to start on projects or find her address book, presents differently from the severely inattentive one who can’t see over the piles on her desk, forgets to pick up the kids from school and sends email to the wrong person at work.

• A diagnosis of ADHD doesn’t mean you have all of the symptoms. It is also important to realize that many of the symptoms are present in everyone to some degree. The determining factors for diagnosis have to do with age of onset, level of impairment in daily life (work/school, relationships, etc.) and the cluster of symptoms that are not related to another medical or mental health condition. There is a lot of overlap between symptoms of ADHD and anxiety, Bi-Polar Disorder, so finding the right diagnosis is critical to finding the right treatment.

If you aren’t sure, but some of these challenges resonate with you, ask your medical provider or see a mental health practitioner for an assessment (preferably the latter). College counseling centers deal with these issues a lot. Don’t wait until your papers are late and grades are dropping to ask for help. Transitions, like going away to college, add stress to an already difficult situation. The change in structure and support may exacerbate ADHD.

LuAnn Pierce is a licensed clinical social worker and writer/blogger. She previously served as Teen Editor for selfhelpmagazine.com. LuAnn has published online articles for multiple publications. Additionally, she has published materials for non-profits such as the National MS Society, including several books (Growing up Sane: In Uncertain Times – 1997) and curricula (The Rest of the Story: Psychosocial Skills for Youth Develop – out of print). She works with dailyrx.com (1-800-THERAPIST) as a contributing expert and writes two blogsites. LuAnn has a small private therapy practice in Denver.   

Last week I went back to high school.

My friend and co-worker, Paola Vermeer, a scientist studying head and neck cancer at Sanford Research, was presenting to junior high and high school students during their school assembly. But this was not just any presentation.

Paola, or Pay was talking about a rare disease, called Multiple System Atrophy.

Pay’s mother recently passed away from Multiple System Atrophy, a progressive, neurodegenerative disease commonly referred to as MSA that she had been battling for 9 years. This was a very painful experience for their family as Pay’s mother was healthy at age sixty. Her health went into significant decline in the last 2 years. Pay created a YouTube video (http://www.youtube.com/embed/t-Db2cMgvSs?rel=0)that outlined this decline and the challenges they faced so she could share the experience with others who may be struggling to support a loved one with MSA.

Pay is brilliant. With a PhD in developmental neurobiology, she is an expert in her area of research. But what was absolutely amazing is how she intrigued and mobilized over 400 junior high and high school kids at 8:00 am last Thursday morning by talking about a complex neurological disease that affects only 50,000 people in the country.

Pay would say it was the candy or treats she handed to students that incentivized students to come down from their perches in the bleachers to participate in an activity but I have to disagree. It was a series of well thought out events that made it a successful learning experience for these students.

Pay started by asking students to come down and form a circle if they knew anyone with Breast Cancer. She moved down the list from more prevalent diseases like Diabetes, Colon Cancer, Parkinsons Disease to rare diseases Duchenne Muscular Dystrophy and Cockayne Syndrome. She explained how unrelated diseases such as cancer and Parkinsons Disease actually have more in common than we think and by studying one, we learn about the other.

Next was the amazing video created by Jeans for Genes (http://www.genesareus.org/filmlibrary/), of a darling 6 year old girl named Ellie who explains Cockayne Syndrome, a rare genetic disease affecting her younger brother, Tom. In a cute British accent, Ellie explains that Cockayne Syndrome is an autosomal recessive genetic disorder that Tom has, which makes his life harder. If you haven’t seen it already, it is truly a must-see.

Then came Tim’s shoe, a globe-trotting Nike Sneaker made famous by a group of teenage kids who played a prank on their friend Tim. Like Paola’s presentation, there is more to Tim’s shoe than what meets the eye. Tim’s shoe raises awareness for MSA everywhere it goes as it is covered with personal mementos from everyone who sees it.  Anywhere Tim’s shoe goes, it is photographed and posted to the Tim’s Shoe Facebook page (https://www.facebook.com/pages/Where-is-Tims-Shoe/348809933762). Since arriving in Sioux Falls it has not been further than 50 ft from Pay since she requested it be sent from her friend Rita in Belgium. Pay has taken Tim’s Shoe to schools, research centers, support groups, and medical centers. The goal is to raise awareness that MSA may be under-diagnosed or mis-diagnosed, that there are no treatments, and that although the disease may be rare, that doesn’t make it any less important than a disease that is common – three elements that are shared by people with rare diseases/three comments that I hear so often when contacted by patients and families of rare diseases about the CoRDS Registry.

Pay’s message to the students was simple and clear:  It is not RARE when you are affected by a rare disease. Once you are affected by a rare disease, it is no longer rare to you.  Rare is only a matter of perspective. What Tim’s friends have done with his shoe for MSA is an example to all of us.  You don’t need to do something expensive or flashy to be extraordinary and impact people the world over. It is a message to set aside complacency and become active in and around your community. Ignore that voice inside that says “what can I do?  I’m only one person?” because Tim’s friends prove that you can impact people, you don’t need the support of an institution, organization or foundation. YOU as an individual can make a difference, no matter your age or the resources you have.

Tim’s shoe was not fancy, expensive, or time-intensive but has been incredibly effective at reaching many people thanks to our digital age of camera phones and social media.  Currently Tim’s Shoe has 2000 Facebook followers, numerous YouTube videos (http://www.youtube.com/watch?v=Mx7Fw7P9seI), and thousands of images and has reached thousands of people. It is awareness campaigns like Tim’s shoe that open up communication lines to talk about rare diseases, empower patients to share their story, mobilize individuals to raise money to fund much-needed biomedical research that will help us understand the etiology of these rare diseases so we can develop better treatments and ultimately cures for these devastating conditions.

Last Thursday afternoon, we heard from the principal of the school.  Apparently several fruitful discussions took place in the classroom and not surprisingly it was not only about the delicious candy. Rather, it was discussion about rare diseases: teachers and students sharing stories about knowing someone affected by a rare disease and even students expressing interested in future careers in biomedical research.

Pay is just one person and limited time. Tim’s friends did not have many resources, either. However, they all saw how devastating MSA is to an individual and their families and wanted to increase awareness of this devastating condition to help those who are affected by MSA. They used a simple idea, took action and changed the world…. and so can you.  With Rare Disease Day coming up, there are many things you can do to raise awareness for any or all of the 7000 rare diseases that affect  nearly 1 in 10 Americans that are affected by a rare disease. 

My list of TOP 5 easy ways to raise awareness for Rare Diseases:

1. Watch the video narrated by Ellie provided by Jeans for Genes (http://www.genesareus.org/filmlibrary/)  in your / your child’s classroom
2. Take a photo of your denim jeans and post to Global Genes Project  on Facebook (https://www.facebook.com/globalgenesproject?ref=ts) Learn more about Global Genes Project here (http://www.globalgenesproject.org/)
3. 3.     Use classroom lessons or activities on genetics developed by our friends at SanfordPROMISE and Sanford CoRDS (http://www.sanfordresearch.org/cords/), the Office of Rare Disease Research (http://science.education.nih.gov/customers.nsf/MSDiseases.htm)
4. Visit NORD (www.rarediseases.org) and print off a Handprints Across America sign. Take pictures wherever you go and post them to your Facebook wall. We started doing this at Sanford Research and posted to Sanford CoRDS Facebook page (https://www.facebook.com/media/set/?set=a.208043239285910.47980.165611436862424&type=3) it has been a huge hit!
5. Join the conversation on Twitter (www.twitter.com). Learn more about rare diseases and organizations and efforts dedicated to rare diseases. Tweet, Tweet and Retweet! To get you started, here are a few to follow: Sanford CoRDS (@SanfordCoRDS) http://twitter.com/#!/sanfordcords, Office of Rare Diseases Research (@ORDR) http://twitter.com/#!/ORDR, RARE Project (@RAREProject) http://twitter.com/#!/rareproject, RareDiseaseDay (@Rarediseaseday) http://twitter.com/#!/rarediseaseday, Inspire (@TeamInspire) http://twitter.com/#!/teaminspire, Marble Road (@MarbleRoad) http://twitter.com/#!/marbleroad. Don’t forget your hashtags: #raredisease, #1mil4Rare, #RDD2012

A list of Rare Disease activities at Sanford Research this month

February 6 – Executive Proclamation of 2/29/2012 as Rare Disease Day City Hall in Sioux Falls, South Dakota.

February 11 – Radio Show on KSOO’s A Better You

February  13 – Radio Show on KSOO’s Viewpoint University

February 25 – 2^nd Annual Sanford Rare Disease Symposium & Life Science Discovery Program (LSDP) at the Sanford PROMISE lab

February 29 – Global and National Rare Disease Day. Join @SanfordCoRDS for a Tweet Chat at Noon CST.

We want to hear your ideas for Rare Disease Day!

Post your ideas on our Facebook Wall (Sanford_CoRDS) http://www.facebook.com/SanfordCoRDS or Tweet to @SanfordCoRDS http://twitter.com/#!/sanfordcords.

Reblogged from independencechick:

I’ve heard some people tell rising college students, “College will be the best time of your life.” Well, I don’t know about best time of one’s whole life, but college certainly is a great experience and, I think, should rank right up there. But too often, for students with disabilities, that doesn’t happen. Sometimes, it’s because parents and teachers mistakenly think students with disabilities, intellectual disabilities especially, cannot benefit from college, or can’t handle it. This, however, just …

Read about a different viewpoint for people with disabilities when they think college.

Take our survey to share your perspective

The current uses of audio podcasts and the accessibility of audio podcasts in U.S. online college courses as perceived by learners with vision loss is unknown. For that reason, we would like to request your participation in this study to share what you perceive to be the current uses of audio podcasts and your perception about the accessibility of audio podcasts in U.S. online college courses. Click on the link below to access the online survey on SurveyGizmo.com.

http://edu.surveygizmo.com/s3/725357/Current-Uses-and-Accessibility-of-Podcasts-in-Online-College-Courses

The survey will take approximately 15 minutes each to complete and will be anonymous.

The link provided will take you to an informed consent form to read. If you choose to participate, you may proceed with taking the survey by clicking Continue at the end of the form. You may click Exit if you choose not to participate in the survey.

Please feel free to forward this invitation to any learners with vision loss that you know of who have taken an online course that provided podcasts, so that they also can participate in the study. You must be 18 years of age or older to participate. The deadline to participate in the survey is May 1, 2012. If you have any questions regarding the study, please contact Kimarie W. Whetstone at whetstonekjw@yahoo.com or Capella Human Research Protections Office at 1-888-227-3552, extension 4716.

Benefits of Podcasts in Online College Courses

Volunteer for an interview to share your perspective

The benefits of using audio podcasts as a form of access to visual course content that would be otherwise unavailable to learners with vision loss are unknown. For that reason, we would like to request your participation in this study to share what you feel are the benefits of using audio podcasts as a form of access to visual course content in U.S. online college courses to learners with vision loss. Email Kimarie Whetstone at whetstonekjw@yahoo.com to volunteer for a telephone interview.

This telephone interview can be completed within twenty minutes and will be anonymous.

You will be e-mailed an informed consent form to read and sign if you choose to participate. Once your signed informed consent form is received by e-mail, you will be sent an e-mail to schedule the telephone interview.

Please feel free to forward this invitation to any faculty or administrator colleagues that you know of whose college or university offers online courses that provide podcasts, so that they also can participate in the study. You must be 18 years of age or older to participate. The deadline to participate in the interview is May 1, 2012. If you have any questions regarding the study, please contact Kimarie W. Whetstone at whetstonekjw@yahoo.com or Capella Human Research Protections Office at 1-888-227-3552, extension 4716.

Participation in this study is voluntary. If you choose not to participate or if you choose to withdraw from the study, you may do so at any time. There will be no penalty. You may also request to receive a copy of the results.

This study has been approved by Capella University’s IRB 203994-2, effective from December 15, 2011 through December 19, 2012.

Thank you for your participation in this study,

Kimarie W. Whetstone

Doctoral Student

There comes a time when virtually every parent contemplates the questions of when and how they should explain autism to their child on the spectrum.  I found myself thinking about this a couple of years ago when my then five year old son, Donnie, who has high functioning autism spectrum disorder (ASD), asked me when his little sister would go to the autism therapy center he attended.  This simple question got me thinking about how I would explain to him why he is different from other children.  What would I tell him when we have our first talk about his autism?

On the internet, I started looking for a book that I could use to help explain autism to him and his younger sister.  I quickly realized that the books on the market basically fell into two categories.  They either dealt with low functioning autism or the story was told from a sibling or friend’s point of view.  These books just didn’t fit my son.  Even though he has ASD, he is able to talk and express his thoughts and ideas.  The more I thought about it, the more I realized that most of the school aged children I know with high functioning ASD can talk and express themselves, especially after early interventions.  Why couldn’t a book’s character reflect this?  I thought that my son and other children like him deserved a character that could share his own thoughts….a character that they could relate to and even look up to.  Inspired by this realization, I wrote ASD and ME.

ASD and Me is written from the point of view of Eli, a seven year-old boy that has high functioning autism spectrum disorder. Through the story, Eli explains how he was diagnosed and how ASD affects the way he thinks and interprets the world around him.  He also talks about some of the social and life skills he has learned that help him fit in with others.  The story concludes with some of the interests and activities that Eli shares with other children.  A “Letter to Parents” section at the end of the book offers detailed information about the symptoms of high functioning ASD, which would be helpful in explaining the disorder to extended family and friends.

It took two years to write and illustrate ASD and Me.  I worked on it after I put the kids to bed and here and there, when I managed to carve out some free time.  The first time I read ASD and Me to Donnie and his little sister was a very special day.  I had poured many long hours into illustrating the book and I hoped they would understand its message.  The most important message from the book is that “every kid in the world is different”.  The book explains that some differences you can see, like hair or skin color, while other differences, like autism, are hidden on the inside of the body.  It is these differences that make each of us special in our own way.

When we came to the page that illustrates Eli’s special school, I explained to Donnie that he went to a “special school” too.  He immediately remembered and assigned the names of his old classmates to the children in the illustration.  He easily related to the different situations Eli was in throughout the book and the feelings that Eli experienced.  Most importantly, learning that he has autism did not scare him, or make him feel sad, or anxious.  I came away with the feeling that it just seemed to all make sense to him and wasn’t a big deal.  As we finished our discussion about the book Donnie turned to me and said “Every kid in the whole world is different, mom.”

“You are exactly right!” I replied.

About the book:

ASD and Me:  Learning About High Functioning Autism Spectrum Disorder

Written and Illustrated by Teresa DeMars.

Special Illustration by Donnie DeMars.

Published by Charity Press Books

Softcover/Perfect Bound

ISBN 978-0-9836388-0-3

Pages:  30  Price:  $12.99

Ebook

ISBN 978-0-9836388-1-0

Smashwords Edition       Price:  $3.99

Connect with Teresa DeMars online:

Youtube video book trailer:  http://www.youtube.com/watch?v=SU-7946HlMw

ASD and Me on Facebook:  https://www.facebook.com/ASDandMe

ASD and Me on Google+:  http://gplus.to/asdandme

Blog:  http://asdandme.org/wordpress/

Links to Purchase:  http://charitypressbooks.com/

The Vocational Rehabilitation Act was ratified in 1973 and has the purpose of protecting those with disabilities from discrimination, especially in the work place. The act also provides federal assistance for vocational counseling, training and job placement for people with mental and physical disabilities.

Every state has a department or division of vocational rehabilitation with offices located throughout the state. If you or one of your family members is interested in going to college, and has a physical or mental disability, your state’s vocational rehabilitation department can help them apply and receive school grants.

The process is simple, and because it is a grant, you will not be responsible for paying back the money when you graduate. Listed below are the steps to take to receive a vocational rehabilitation college grant:

1. Call your local vocational rehabilitation office and explain your situation: Tell them what type of disability you or your family member has and that you or they are interested in going to college. Ask what steps you need to take to apply for a vocational rehabilitation grant. To ensure grant funds will still be available, you should contact the office at least five months before beginning your first semester of college.
2. Set up an appointment: In most states, you will be assigned a vocational rehabilitation caseworker. This person will work with you throughout the years as you attend school. In your first meeting, you may need to bring a note from your family doctor or psychologist verifying your disability (this is especially true for those with mental disabilities).
3. Verify the grant with your school’s Financial Aid Office: Once you have been accepted to a school, been approved for vocational rehabilitation assistance and received the grant, you will need to visit your school’s Financial Aid Office to verify their receipt of your grant information.
4. Stay in touch: In order to continue receiving vocational rehabilitation assistance, you will need to periodically meet or speak over the phone with your rehabilitation counselor. Most state vocational rehab departments will also require you to submit doctor’s or counselor’s reports on the status of treatment for your disability every semester. You will also need to submit your grades to your caseworker at the end of every semester. If you do not comply with these requirements, your grant (and any other assistance) can be revoked.

Keep in mind that every state vocational rehabilitation office functions a little differently, although the overall process is very similar. For information on how to receive assistance, contact your state’s individual department.

Lindsey Webster has been a rehabilitation counselor for 15 years and also owns the site Masters in Counseling  http://www.mastersincounseling.org/.  She likes to write about different topics related to counseling and careers.

By Heather Becker, Ph.D. and Shauna O’Neal, Nursing Student

The University of Texas at Austin School of Nursing

When you are busy with class assignments and the demands of life on campus, thinking about your reproductive health may seem like a distant priority.  But for women, reproductive health care – including both sexual health and family planning– is something to think about.  Know that you have the right to quality reproductive health care.  That means health care providers should make their offices physically accessible, from the front door to the examination table. Your medical provider should have information on providing accessible facilities; in 2010, the U.S. Department of Justice Office of Civil Rights prepared a booklet entitled “Access to Medical Care for Individuals with Mobility Disabilities” (available at www.ada.gov) that explains what is required under the Americans with Disabilities Act.

Yearly examinations to check for vaginal infections, cervical tissue changes, and changes in breast tissue are an important part of staying healthy. Even if you’re not sexually active, your doctor can answer any questions you may have about abnormal periods, unexplained pelvic pain, or starting sexual activity at your annual visit. The Federal Affordable Care Act now makes these well-women visits low or no cost to you. It’s possible to make your visit go more smoothly by alerting the staff about your disabling condition when you make an appointment—this allows them to plan ahead for extra time, staff, or equipment, if necessary. Your provider should discuss your reproductive health care with you – including methods of birth control, testing for sexually transmitted diseases, and answering questions about sexual behaviors. Your obstetrician/ gynecologist may not have treated other patients with a disability such as yours, so he or she may not be an expert in your disability. Choose a doctor or nurse who is willing to listen to your expertise in living with a disability, and willing to provide you with outside informational sources if there’s something they don’t know. This is a great opportunity to forge a “teamwork” relationship. You both want you to be healthy!

Down the road, you may wonder if you can or want to parent a child. Most women wonder about family planning, at some point. This is something that each woman must decide for herself, but if you do want to have a child, Dr. Coble-Temple – herself a woman with disabilities – offers the following advice:

Have a positive sense of yourself

Know how to locate information on pregnancy and disability

Get support from family and friends

Prepare and Plan; Figure out what you can do and what you will need help with

Trust yourself

The following websites provide additional information for women with disabilities about reproductive health care and parenting.

Center on Research for Women with Disabilities < http://www.bcm.edu/crowd/ >

Through the Looking Glass < http://www.lookingglass.org/>

If your doctor or nurse is not familiar with treating women with disabilities, you might suggest they check out the following website for OB/GYNs sponsored by the American Congress of Obstetricians and Gynecologists: http://www.acog.org/departments/dept_notice.cfm?recno=38&bulletin=4526

By Sarita Freedman, PhD

In 1995 the world was witness to an explosion in the number of individuals diagnosed with Autism, especially High Functioning Autism (HFA) and Asperger’s Syndrome (AS).  The Center for Disease Control quotes current incidence rates in the United States as 1 in 150, in sharp contrast to previous rates of 1 in 10,000.  These rates appear to be consistent world-wide.  Young children who received diagnoses of HFA or AS are approaching young adulthood and, due to increasing publicity about autism spectrum disorders (ASD), previously undiagnosed adults are seeking diagnosis and treatment.

So, what is life like for adults who never received intervention?  Mr. Tim Page writes one of the most eloquent personal accounts I’ve read to date in his article, Parallel Play (The New Yorker, August 20, 2007).  Mr. Page notes that the symptoms of AS include, “early precocity, a great ability to maintain masses of information, a lack of ability to mix with groups in age-appropriate ways, ignorance of or indifference to social norms, high intelligence, and difficulty with transitions, married to a preternatural ability to concentrate on the minutia of the task at hand” (pp. 36-37).  “Restricted, repetitive and stereotyped patterns of behavior, interests, and activities,” a hallmark of ASD (DSM-IV TR, American Psychiatric Association, 1994) is cleverly referred to by Page as “monomanias.”  He remarks, “Not only did I not see the forest for the trees; I was so intensely distracted that I missed the trees for the species of lichen on their bark” (p. 38).

The second hallmark of ASD is “a qualitative impairment in social interaction” (DSM-IV TR, American Psychiatric Association, 1994).  Page notes, “Caring for inanimate objects came easily.  Learning to make genuine connections with people—much as I desperately wanted them—was a bewildering process.  I felt like an alien, always about to be exposed…deeper emotions reduced me to aching silence” (p. 38, 41).  Most teens and adults with HFA/AS acknowledge a strong sense of confusion and despair when it comes to fitting in socially.  They are poor judges of character and are socially vulnerable.  Social vulnerability and naivete often results in exploitation.  Tim Page give us a “bird’s eye view” of the internal experience of individuals with ASD.  Reflecting on his life of 52 years, Page recounts “the melancholy sensation that my life has been spent in a perpetual state of parallel play, alongside, but distinctly apart from, the rest of humanity…my pervasive childhood memory is an excruciating awareness of my own strangeness” (p. 36).  That he would rather “improvise an epic poem at a sold-out Yankee Stadium” than attend a small social gathering (p. 41), highlights the depth of social discomfort most people with ASD experience.

The current generation of high-functioning people with ASD has benefited from early intervention in some cases and in others, intervention that begins after the average age of diagnosis—still between 7-9 years of age.  The types of interventions that have been found most useful for high functioning individuals with ASD have a relationship-based philosophy at their core.  This is central to the development of self-awareness, awareness of others, and the ability to participate in reciprocal relationships.  Most motivated individuals can “learn” what the rest of us simply pick up naturally, often referred to as the “hidden curriculum”—social etiquette, non-verbal cues, friendship skills, characterization of others’ strengths and weaknesses, empathy, pragmatic communication skills, etc.  Although individuals with ASD may not be hard-wired to understand emotions, empathy, and friendship, they can learn to do so.  This speaks to the common fallacy that individuals with ASD cannot empathize.  The fact that individuals with ASD may not express empathy and emotional understanding the same way that “neurotypical” individuals do, does not minimize their ability to experience deep, personal emotions and empathy.

Intimate relationships between a “neurotypical” person and a person with ASD are almost always fraught with challenges.  The partner without ASD often reports feelings of loneliness and deprivation of affection (Attwood, 2007).  Many reports of failed marital therapy are a result of clinicians who approach these couples as they would any other couple.  According to Attwood (2007), there are three prerequisites for a successful relationship:  both partners must acknowledge the diagnosis; both partners must be willing to learn and change; the couple should have access to a clinician who can modify the counseling to “accommodate the profile of abilities and experiences of the partner with Asperger’s Syndrome” (p. 315).

A final and important area of impairment in individuals with HFA/AS lies in the cognitive domain, particularly in the area of Executive Functioning (EF).  Much has been written, and research in this area continues to shed light on the types of challenges faced by students of all ages with ASD.  Deficits in EF have been the primary reason for many very bright students with ASD to either fail or drop out of college, with social deficits falling closely behind.  In order to succeed in college, most students with ASD require many of the same accommodations that students with other learning differences need.  However, there are additional supports specific to the student with ASD that will need to be in place for a successful outcome.  These include but are not limited to:  the broad areas of executive functioning, social concerns, and independent living skills.  Fortunately there are many universities and colleges that recognize the need for these additional supports and accommodations and specific programs that include staff training and individual mentoring for the student with ASD are being developed.  So far, their success rates are impressive!  This type of support may need to extend into the process of securing employment and the individual’s ability to function in the workplace.  Community and governmental supports can also be very useful towards this end.

Our society has already benefited from the ideas and inventions of individuals with ASD, past and present.  Appropriate programs and interventions will enable people with ASD to maximize their potential, live happy lives, and continue to contribute as university professors, scientists, librarians, researchers, tour guides, military personnel, telemarketers, lawyers, physicians, and more.

Dr. Sarita Freedman is a licensed psychologist in Calabasas, CA.  She specializes in working with individuals of all ages who are affected by autism spectrum disorders, and their family members.  She is the author of Developing College Skills in Students with Autism & Asperger’s Syndrome.  For more information you can go to her website www.saritafreedman.com, and check out her facebook fan page @http://www.facebook.com/pages/College-on-the-Spectrum/122968414401855

BIBLIOGRAPHY

American Psychiatric Association (APA) (1994) Diagnostic and Statistical Manual of Mental Disorders, 4^th Edition (Text Revision).  Washington, DC:  American Psychiatric Association.

Attwood, T. (2007) The Complete Guide to Asperger’s Syndrome.  London:  Jessica Kingsley Publishers.

Center for Disease Control (2007) Autism Information Center, Prevalence of ASD’s. http://www.cdc.gov/ncbddd/autism/faq_prevalence.htm#whatisprevalence

Page, T. (2007) ‘Parallel Play.’ The New Yorker August 20, 2007.

Dr. Luis Melara is an Assistant Professor in the Department of Mathematics at Shippensburg University. He has a Doctorate in Computational and Applied Mathematics from Rice University.  Dr. Melara recently participated in a Question and Answer session with We Connect Now regarding his own experience in applying to college and as a professor working with college students with disabilities on his campus.

Q and A with Professor Luis Melara

What services were made available to you as a high school student to help you to succeed in, or prepare for, college?

My high school did not offer any services to help me succeed in, or prepare for college. I took AP courses and other college-bound courses to help me prepare.  As a junior in high school, I visited the university campus I would eventually attend for college.  This trip was coordinated with one of the counselors at my high school and an outreach student group at the university.

Do you think that these services were sufficient to prepare you for college?

The visit to the university motivated me to apply there for college.  I found the college student tour guides to be very welcoming and I loved the campus.  I was very happy when I learned I had been accepted.

Would you have added any other or different services from those made available to you?

I would have really benefited from counseling because the college application process was not known to me or my parents.  I had plenty of questions about college which I found out mostly by reading brochures and conversations with my classmates, who seemed to know more than I did.

Did you receive any special trainings or seminars from your college to prepare you to teach students with disabilities?

No.

What type of disabilities have you accommodated in your classroom while a professor?

Students with disabilities are registered with my institution’s Office of Disabilities.  I am legally not privy to the types of disabilities students have.  Faculty receive letters from Office of Disabilities informing us of students in our courses who are registered with their office and that they may approach us about taking exams at their office. I am not informed of the specific accommodations provided, however.   I send a test to the office and then, it is returned to me, after the student has finished.

Do you personally know any professors with disabilities in your field, Mathematics?

Yes, I do.

How well-integrated in the classroom are students with disabilities that you have taught?

Students seem very well integrated.  They attend classes like the rest of their classmates and the only difference is on exam days, when they take their tests in the Office of Disabilities. I’ve had students who are registered too but choose to take the tests with everyone else in class on exam days.

Are students with disabilities a group with a visible presence on your campus?

Unfortunately, I am unable to tell since the campus has many student groups and I am not familiar with all.

By Nicholas Zappola

Choosing the right college is tough enough—when do you really know it’s the “right” one?—but when you live with Charcot-Marie-Tooth disease, it’s an even bigger challenge. Some things to think about when choosing a college would be walking distances, handicap assistance (in case crutches or wheelchair needed), the surrounding geography and so on. This will help narrow the choices down to actually quite a few colleges out there.

Those of us who have CMT understand that long walks can sometimes be quite painful. Our gait and balance can be affected by the disease, and walking can cause some uncomfortable feelings and even pain. What can be done about this when looking for the right college? It’s easy–federal law requires most schools to provide students with disability assistance necessary for access to class. For example, one college I visited, High Point University in North Carolina, has a huge campus that would be difficult for me to get around while having CMT. One thing I found out though was students with disabilities have the right to help in accessing class, even if that means a golf cart!

Schools everywhere have some form of assistance for people that are in need of an elevator or a wheelchair ramp to get around from place to place. Although a lot have these things to help, there are certain schools where there could be issues with your crutches or wheelchair. Some schools I visited had sidewalks that were so uneven with cobble stones popping up left and right, making it easy for one to trip even without crutches. That’s a school that I would not recommend going to for your own safety. Colleges should be searched based on geography and surroundings, because if a college is on a hill or very uneven then it shouldn’t be considered as a top school.

Just remember that you may be legally entitled to receive assistance if you need something to help you get around. Choose your school wisely, not just by academics, but choose because of the feel it gives you. Consider your own needs when it comes to your CMT as you pick your college.