By Jeane Wharton
My husband thinks we should buy a dishwasher. I don’t think we need one—we have teenagers!
At the end of a family meal, I find solace in my cozy kitchen. The evening sun warms the pale yellow walls and shiny wood floor. The sunflowers-and-blue gingham dishes make me smile. As Barney Fife would say, “It’s ther-a-ped-ic” to smell the lemony dish soap as the fluffy, white suds rise elbow-high.
Unlike classic-television-dad Ward Cleaver, my husband does not dry dishes as I wash them—our son does! A.J. is thirteen, and there are other things he would rather be doing. He protests. I remind him of the Chinese proverb “many hands make light work.” He rolls his eyes as I say the proverb for the umpteenth time. He grabs a clean dishtowel and takes his place beside me at the sink. As we stand there, something wonderful happens–we TALK. Alone in the quiet kitchen we talk about the day’s ups and downs, current events, and religion. He tells me about his silly lunchroom buddies, a great science experiment or a difficult Language Arts test. The piles of dirty dishes disappear as we chatter away.
It hasn’t always been easy to talk with A.J. For the first three days of life, he slept. For the first three years, he cried and did not sleep. He didn’t talk until he was almost three. He would gesture and cry or whine. His older sister served as interpreter. “He wants a drink.” “He wants his blanket.” We chalked it up to his being the youngest.
When he finally did talk, he spoke in lengthy, grownup sentences. His comprehension was amazing. He was the only three-year-old in the neighborhood who knew Eastern Time from Central, Mountain and Pacific Time. He understood complex concepts like “to be continued.” He could quote extensive passages of movie or television dialog or expound upon the latest episode of a television show. Give him a few minutes, and he would tell you more about a certain collectible figure than you would ever need to know. But, he would not “converse.” He felt no empathy, expressed no interest in someone else’s point of view.
A.J. would answer questions with a yes or no. He might elaborate, if pressed, but generally he was a “man of few words.” Friends would comment on his serious facial expression and his monotone voice. He took figures of speech literally. His longtime babysitter tells the story of how she told another little guy to “get your tail out of the refrigerator.” Four-year old A.J. looked at her and said, “Janet, he doesn’t have a tail.”
Later that same year, while walking through the Winnipeg Zoo, A.J. sat upon his daddy’s shoulders. My husband held him by his sandaled feet. A.J. fussed. Finally, in exasperation, my husband asked what was wrong. A.J. said “Raphael can’t see.” A.J.’s sandals featured plastic heads of Raphael, the Teenage Mutant Ninja Turtle. Indeed, my husband’s hands covered the Turtle’s eyes.
A kindergarten screening almost kept A.J. from entering school. His September birthday had disqualified him the year before. He knew the days of the week, the months of the year, the alphabet. He could count. He could tell you that the “Power Rangers come on at 3 o’clock Eastern time, 2 o’clock Central.” But he couldn’t use scissors. We assured the screener that he was ready to start school, and that we would work with him to master the scissors skill.
The kindergarten classroom was full of brightly-painted cubbyholes, primary-colored area rugs, and the loud, cheerful voices of children. Murals and pictures hung on the walls. Mobiles dangled from the ceiling. It was adorable; it was A.J.’s worst nightmare.
Nine years later, I understand: A.J. was experiencing sensory overload. He didn’t appreciate the teacher’s hugs. He hated being pushed and pulled by rowdy classmates in line. The busy classroom was too much for him.
I wish I had known then what I know now. I wish someone had told me then about “Sensory Integration Dysfunction” and graphomotor function. I wish we could have detected the “low motor input” when he was that sweet little kindergartner. We didn’t. For years we had well-meaning teachers tell us: He’s lazy; do you give him chores to do at home? Oh, he’s the youngest, isn’t he? Let’s sign you up for parenting classes. Sixth grade won’t be so bad a second time…
A.J.’s doctor has called me a bulldog. She tells me A.J. is fortunate to have me for an advocate. Ha! I think the school secretaries, teachers, school counselors and administrators sometimes wish I would go away.
But I didn’t go away; I looked for answers. When he was a fifth-grader, I pushed for testing. School personnel would say “you don’t want him labeled…” I would reply that I didn’t care what he was labeled, as long as he was helped. I read books by Dr. Mel Levine, Tony Atwood, Carol Kranowitz and Echo Fling. I learned new words like Pervasive Development Disorder, accommodation, motor sequences and spatial perception.
A.J. was learning, too. Occupational Therapists worked on his poorly-developed gross and fine motor skills. He learned to ride his bike at age 12. He is now buttoning buttons and can easily open the combination lock on his locker.
Lockers and other challenges have made middle school as great a challenge as kindergarten was. Only in middle school he has pimples, peer pressure and puberty. Puberty hit this summer. He grew six inches in less than six months. A few nights ago I watched him place the largest Pyrex bowl on a high shelf. I marveled at this tall, thin young man. Just yesterday he would place the dishes for shelves he couldn’t reach on the kitchen table. I would put them away when the others were done. Now when he finds the Hershey’s Chocolate Kisses I’ve hidden above the coffee mugs, he looks DOWN at me, grins and asks “Mom, what have we here?!”
He kisses us goodnight each night. His hug is firm, his smile is wide. He is fresh from the shower, and he smells of “Bodywash for Men.” I think of how I used to tuck him in after his bath—how he smelled of baby powder and Johnson’s shampoo. Then I chuckle as I recall how much he hated baths, soap and shampoo!
He tells us goodnight. His deep, rich voice startles me. I notice dark facial hairs, and his dad and I talk about him shaving. Our baby will shave and start high school in a matter of months. He is talking about driving. I can’t imagine him in control of a car. He runs into people and things with a grocery store cart—we’re going to let him drive a car?!
I have to be honest. For many years, I focused on what A.J. could not do. He couldn’t sweep a floor or run or catch a ball. He made poor grades. He was uncommunicative. His strict adherence to ritual ruined family outings. (Remember Dustin Hoffman’s character in the movie Rainman? A.J. didn’t watch Jeopardy, but heaven help us if he wasn’t home to see the Power Rangers or Ninja Turtles.)
I try now to focus on what he can do. He has a sharp wit and loves puns. He has read everything J.R.R. Tolkien has ever written. He has performed in children’s theater. At eleven, he performed in a local professional production. He can snow ski and ice skate. He is a kind, affectionate person. He has plans to attend college and work with computers.
When A.J. was little, he had pale blonde hair and brown eyes. My mother-in-law would say “He looks like cousin Paul.” My mother would say “His facial expressions are like your dad.” A family friend would smile and say “He looks like A.J.” Years later, I hear her voice. I think she was so right. He is not cousin Paul. He is not my dad. He is A.J., a unique individual, a blessing in our lives!
by Aaron Levinger, age 14
A lways Means Well
S pecial Interests
P eople Seem Strange to Them
E ars Hurt When Things are Loud
R ules are Very Important to Them
G ets Mad When Routines aren’t Followed
E veryday Tries Very Hard
R emembers Things Very Well
S ocial Rules are Hard
By Kate Collins-Wooley, Ph.D.
Asperger's Syndrome (AS) is such a recent diagnostic category in the U.S. that most of the individuals who carry it are children or adolescents. We are only now developing a fund of experience that can anticipate and meet schoolchildren's needs; we know even less about the typical vocational functioning and other needs of adults with AS.
Since most children with AS appear to require some interventions, supports, or modifications to enable them to succeed in school, it seems reasonable to assume that many adults with AS will require at least some supports or special conditions in the workplace. One of the most common concerns adults report to AANE is work failure. Although many men and women with AS are succeeding in the workplace, many others have a history of being unable to get and hold on to jobs.
This article is intended to help adults with AS (and the parents, spouses, and mental health professionals who support them) to analyze employability, plan for any reasonable remediation of weaknesses, and identify the characteristics of jobs where adults with AS are most likely to feel comfortable and succeed. For those adults for whom competitive employment is not an option, we will outline how to seek disability benefits. In part, we will use what we have learned about how to help children with AS succeed in school, and adapt those insights and techniques to meet the needs of adults in the workplace.
Overview
AS is characterized by three clusters of symptoms or general kinds of difficulties that can directly impact employment:
Just as each cluster of symptoms often necessitates accommodations for a student with AS in school, similar accommodations may determine the difference between comfort and catastrophe on the job for an adult employee with AS. Let’s look at these three areas individually.
Sensory Issues
In the classroom, many children with AS become over-aroused when their senses are flooded by noise, flickering lights, or other triggers. They may feel anxiety or even panic, and react with tantrums. Often they require some accommodations to reduce sensory stimulation, such as sitting at a desk placed against a wall or at some distance from other students. They may wear headphones, or have special permission to leave the classroom to compose themselves in a “safe place,” such as a resource room or the school library.
Workplaces differ greatly in their general sensory load and in their flexibility about worker movement. Obviously , success for AS individuals is more likely in workplaces that are quiet, predictable, and allow frequent brief retreats from social demands, noise, etc. Even when employees with AS may not be aware of or complain about discomfort from noise, activity and unpredictable sensations, sensory overload may manifest itself as loss of focus, stress, or lowered tolerance for frustration.
Tolerance for sensation, or the ability to self-regulate, improves so much with time that adults with AS can often function well in stimulating environments. In addition, an adult at work is seldom quite as “trapped” as a child is in school. Therefore, this issue is probably not a huge obstacle to employment for most people with AS, but may remain a substantial consideration for some.
Social Issues
Most children with AS struggle socially. Some are aloof, and some exhibit behaviors that offend or estrange others. Some wish to have friends, but don’t know how to make a friend or maintain a friendship. Students with AS may also struggle with the social focus and content of subjects such as history or literature. Theory of mind or perspective-taking problems are common throughout the school years. Most education plans include special supports or instruction to improve social abilities, or to provide some relief from usual social expectations. For example, a child may see the speech therapist or adjustment counselor to learn social skills, but also be excused from eating in the lunchroom, or exempted from the usual disciplinary consequences for behaviors whose consequences s/he may not understand.
For an adult with AS considering employment, the question is whether s/he has sufficient social skills to meet the social demands of a particular kind of work without requiring the special supports and allowances that were provided when s/he was in school. Even if s/he can fit into the workplace socially, will it require such extraordinary efforts as to exhaust him/her, and so interfere with learning other aspects of the position?
We can expect that many adult employees with AS will have idiosyncratic difficulties in getting along with coworkers, accepting and responding to supervision and, especially, in dealing with the public. We think that most adults with AS who succeed at work are in roles that allow them to work independently most of the time, and have minimal responsibilities for or to unfamiliar people (i.e. the public or supervisees). They will need a sympathetic supervisor who understands the nature of AS, and can give close supervision and clear, patient instruction about job responsibilities and tasks.
Adults with AS should seek work in fields that do not require a great deal of “mind reading” or empathy. If attempts to obtain work through traditional resumes and interviewing are not effective, they may wish to arrange for special introductions to obtain work (e.g. through Mass Rehab or one of its provider agencies, or through personal or family contacts). It is also very helpful for many adults to find a mentor (social coach, job coach) who can act as an interpreter between the employee and others in the workplace.
A mentor can help the employee with AS decipher and abide by the unwritten social rules of the workplace. At the same time, the mentor can help supervisors and co-workers set the employee with AS up to succeed, by providing clear instructions and using an explicit, straightforward style of communication. A mentor can help ensure that supervisors and co-workers understand that any inadvertent social gaffes are related to the employee’s AS, so that others can be accepting, and continue to provide the information, support, and direction the employee with AS will need to stay on the job.
Executive Functioning and Cognitive Issues
Fortunately, many schools have embraced the concept of “all kinds of minds” and the need for individualized instruction to enable all students to achieve their full potential. When students with AS get appropriate support, their intelligence, talent, original ideas and wonderful, off-beat humor can shine forth for teachers and peers to savor and appreciate. Despite average or better IQ, however, many kids with AS have difficulty in school because of difficulties with organizational skills, problem-solving, abstraction, processing speed, concentration, and deficits in central coherence. They may be early readers but have relatively poor reading comprehension. They may accumulate a large fund of detailed knowledge, but miss the big ideas. To address these issues, students with AS almost always require some or all of the following:
Unfortunately, it will be quite some time until an “all kinds of minds” culture spreads to the workplace! The accommodations that allowed the child with AS to show his or her intellectual ability and special talents in school are generally not readily available at work. All responsibility for organizing, remembering, and interpreting cues falls on the worker with AS—and expectations for timeliness and quantity of work are usually non-negotiable. In addition, employees are expected to exercise “common sense” or “good judgment” in handling a variety of situations whose nature and requirements may not be at all obvious to a person with AS. Adults with AS usually have great learning potential and very good, but different, minds. However, their different cognitive style can pose a very significant handicap to full employability for adults with AS, because of these pressures for independence and productivity, and because of the expectations for “good judgment.”
People with AS often have limitations in thinking conventionally about priorities, scheduling, or balancing competing interests because of their problems with “central coherence.” Even well-meaning co-workers or supervisors may be taken aback by the inability of an employee with AS to differentiate between details vs. the “big picture,” or a tendency to overlook context when interpreting information.
Success for AS individuals is more likely if they are able to work in an area related to their special interests or talents. Some become quite expert in a particular field because of extensive study or the serious pursuit of a hobby. In that case, they are better able work quickly and require less supervision, while their competence and contributions are more likely to be recognized. Many adults with AS are more clever than quick; they will probably do better in a setting that emphasizes quality of work over quantity, and where time pressures are relatively low. They may excel at technical or concrete tasks, but may not do as well at abstract or managerial tasks. They will also do better when others prioritize tasks and manage projects.
The Ideal AS Workplace
To summarize, we predict that most adults with AS will be most likely to succeed in a workplace or job role:
When Competitive Employment is Not an Option
As early-diagnosed and early-treated children with AS come of age, we hope that tomorrow’s adults with AS will be better prepared to enter the workforce—but the data is not yet in. Today, many adults are connecting with the AS diagnosis, which was not available to them as children, precisely because they are seeking explanations for and assistance with their problems in the workplace.
Some fail repeatedly despite having advanced degrees or superior skills or knowledge. A weak work ethic or poor work habits are not the source of the problem. Adults with AS are out there, giving it their all—but still not getting the job, or getting fired repeatedly.
How to File a Social Security Claim
When work is not an option, most people will turn to social security for disability benefits, either SSI (Social Security Insurance) if you have no work history, or SSDI (Social Security Disability Insurance) if you do. (People with some work experience may also have some private disability insurance plans, but these also generally require that you also apply for social security benefits.) If your claim for benefits is successful, you will become entitled to both income (usually $300-$400 per month depending upon your living situation) and health insurance (Medicaid if you have no work history, and Medicare if you do).
We will now explain the adult social security application process, and in particular the clinical judgments that are made about whether social security applicants (claimants) are or are not able to work. Understanding clinical reasoning about employability may also help individuals with AS and their supporters figure out whether further work attempts are necessary or desirable.
As Peter Martinelli explains in his article Disability Aspects of Asperger Syndrome in the fall 2002 issue of the AANE News, there are certain non-disability eligibility requirements for disability benefits that are generally easily sorted out during the first contacts with the Social Security Administration. Applications are usually made through the community field offices and can be made in person, by telephone, by mail, or even over the internet. The Social Security field office verifies the non-medical technical eligibility requirements such as age, employment, marital status, or Social Security coverage information, and sends the case to the Disability Determination Services (DDS) agency for evaluation of evidence of disability. DDS is always a state agency, funded by the U.S. government, and in Massachusetts is a service of the Massachusetts Rehabilitation Services.
You (the adult applicant or claimant with AS) will be asked by DDS what conditions or illnesses you feel prevent you from working, what your work history (if any) has been, including when and why you stopped working. You will be asked to provide the names, addresses, phone numbers, and dates of services of all your health care providers, and for any hospitalizations. You should list all factors that may play a significant part in your work problems, even if you feel that AS is the primary or major concern. Some health problems and all psychiatric diagnoses can and should be researched as contributions to disability. If you are a current or recent student you should also remember to provide the school specialists in psychology, OT, or speech and language as treating sources as well, especially if there are test reports available. If you are likely to find the application process difficult, you may also list on the application a friend or relative that you authorize DDS to communicate with if problems arise. DDS will not routinely contact this helper, but may do so if you can't be located by mail or phone, or if you seem confused or demonstrate serious difficulty about the process during the weeks or months that DDS is investigating your claim.
DDS will write to all of the treating sources you list on the application and may request your records, any treatment summary, any testing or lab reports, and/or may request that certain special inquiries be completed. A treating source is a claimant's own physician, psychologist, social worker, therapist, or other medical care provider, and is considered by DDS to be the best source of evidence about the nature and severity of your problems. If you have had treatment it is essential that DDS knows who, what, when, and where.
By far the best way for treaters to respond to DDS requests for information is to complete the DDS form (in Massachusetts, form 0588), which asks very specifically about the impact of your impairments on daily activities and interpersonal relationships. Therapist treatment notes are often inappropriate for information about work functioning because they are focused on symptoms such as sleep or mood rather than on functional activities that relate more clearly to work obligations. They also may use terms such as “stable” or “improving” that are misleading about your abilities because it is referring to your unique baseline or typical functioning rather than to a neurotypical reference group. Be sure to ask your treater to fill in this particular form. It does not take long, can be handwritten, or can even be dictated to a DDS toll-free phone service. The form requires information about your illnesses, a brief history about any hospitalization or residential treatment, your current mental status (questions about sleep, thinking, or mood). Then there are the questions about daily activities and relationships. Your treaters are not asked whether you are disabled; that is considered to be a decision only DDS can make. The treater is given the opportunity to comment on the severity of the symptoms and the impact of the impairment on how you live. It is important that your treater give specific examples of problems. General comments such as “can't work” or “very limited” must be backed up with concrete evidence. The following are the areas of day-to-day life that provide insight into your potential functioning in a job, which your treater will be asked about.
Adaptive Function: In general, how do you deal with social relationships, daily responsibilities, and leisure time activities? This is a question about maintaining some kind of daily routine and set of responsibilities. This is not particularly a limitation for most people with AS.
Concentration and Attention: The concern here is about the ability to accomplish chores without significant distraction. Some people with AS cannot cook without forgetting things on the stove, or make lists and lose them, or mismanage essential paperwork because of internal preoccupations, obsessive compulsive concerns, or because of problems with perseveration.
Memory: This is a question about the ability to remember instructions, or tasks such as shopping.
Ability to travel in public: This is a question about capacity to drive or to use public transportation without a companion.
Social: This question may address such issues as neatness and punctuality, and the ability to accept supervision and get along with co-workers.
Routine stress: This is a question about keeping up with responsibilities when there are changes in the tasks or schedule, or when productivity demands increase. How a person handles being hurried or thrown simple upsets reveals a great deal about her/his capacity to cope with work situations.
Need for excessive supervision: Problems dealing with social demands and with stress tolerance, as well as poor decision making or judgment, and preoccupation or negativism, may necessitate a level of supervisory attention that is not generally available in competitive employment.
Past work: Your treater will also be asked if you have had any pre-vocational services or opportunities such as a sheltered workshop or Mass. Rehab. Support. There is also a question about whether you have resigned from or been fired from jobs because of psychiatric symptoms. Psych treaters often are not aware of these details, so you should talk about any work failure experiences with your treater before this question is answered. If you do not have any employment experience, this may be the place for your treater to explain why work attempts have not been made. For people with some sustained employment, this is the place to make clear why work became unmanageable. If there was any kind of special support in place at a past job, that should also be clarified. Working for friends or relatives, having a uniquely supportive supervisor, or being entirely self-employed may be as “exceptional” for level of support as a vocational rehabilitation setting and may explain why competitive work is not possible despite a strong work history.
You should check in with the disability examiner assigned to your case to make sure that all the treaters or care providers have sent the DDS the requested information about you. If reports are missing, it may be necessary for you to get your records yourself, or to remind, encourage your treaters' offices to send out this vital information. You may need to be quite persistent and assertive, or to enlist the help of a family member or other “neurotypical” (non-AS) ally.
If you have not had relevant treatment, or your records are unavailable or are unclear about your functioning or limitations, DDS will arrange for a consultative examination (CE) at their expense. A psychiatrist or psychologist will interview and/or test you to learn more about your abilities and limitations. These doctors are well informed about Social Security disability requirements, but may not have any particular expertise about AS. If you are asked to attend a CE but feel that you have treaters that know you well and have seen you within the past year, you should check to see if they have provided records to DDS, or will do so immediately. If sufficient evidence is provided, DDS will cancel the scheduled CE; however, if it is not cancelled you must attend the exam.
Medical Professionals Review the Evidence
Once the DDS has collected a body of information about your case, a medical and/or psychological consultant reviews your application with all the supporting evidence. Medical concerns are reviewed by a non-psychiatric physician, and psychiatric concerns are reviewed by a psychiatrist or psychologist. This is a review of the data collected only; the reviewer does not have any contact with you the claimant. The reviewer may contact your treaters, generally by phone, for additional information.
In addition to the information in your medical records, though, the reviewer will take into consideration some of the information you provided in your initial interview about your daily activities and your work history. If they haven't been sent to you initially, ask your assigned disability examiner for an Activities of Daily Living (ADLS) form and, if you have been working, for a Work History form. Use these forms to provide information about your social deficits, problems with stress tolerance, or difficulty functioning independently. You may also send in any non-medical evidence that you think illustrates your problems, such as a termination letter from an employer or a report from the Dean of Students about your problems with dorm life. Do not send general information about AS or your other conditions.
The reviewer is required to determine that documentation of the existence of the claimant's impairment (the illnesses, syndromes or diagnoses) has come from an “acceptable medical source.” For AS, this means a licensed psychiatrist or psychologist (M.D., Ph.D., Ed.D., Psy.D.). Once that is established, all the medical evidence as well as information from any non-medical source (you yourself, social workers, other therapists, teachers, employers, etc.) can be considered to determine the severity of the impairment.
The reviewer will then consider all of the medical and non-medical information provided and make decisions in a “sequential analysis” about eligibility for disability benefits, as described in Peter Mortinelli's Fall 2002 article. The claim will be “allowed” and the benefits provided, if the reviewer determines that:
What If Your Claim is Denied? The Appeals Process
If benefits are denied, some explanation is provided about the thinking behind the decision. The letter may report that the impairments are not severe, or are not expected to be disabling for at least twelve months, or do not preclude simple work situations. This provides a framework for planning for an appeal.
The first level of appeal is called a "reconsideration," which is generally a review of the same available evidence by a different psychologist or psychologist. If that is not favorable, the claimant has a right to a "hearing" before an administrative law judge. The final level of appeal, short of Federal Court, is a review by the Appeals Council. A significant portion of cases are decided in favor of the claimant at all levels of appeal, and do not require an attorney. It may take quite some time to go through the appeal process, but it should be pursued if you feel that you have been misunderstood, and you continue to be unable to work because of your disorder . It is highly desirable to provide new and/or different evidence about your limitations during the appeal process and it is wise to address the reservations outlined in the denial letter.
Work Incentives
Even if you are awarded disability benefits (income and health benefits) it is possible, and perhaps desirable, for you to continue to attempt to work. Social security and SSI have special rules called “work incentives” that provide continued support while you work on a trial basis. As long as you are medically disabled, benefits can continue for many months. Even after benefits stop, you still keep your Medicare or Medicaid for many months. During this period, if you stop working, you return to full benefit status. The purpose of the work incentives is to encourage you to try to work without risking your disability status. These work incentives should be part of the discussion between psychological treaters and the AS patient when making treatment plans about work or disability benefits efforts.
To obtain copies of Peter Martinelli’s article on SSI, or Living, Loving and Working: Life Issues, Solutions, & Resources for Adults with AS, contact the AANE office. For a “red book” summarizing Social Security Administration services for people with disabilities, call 1-800-772-1213.
Children with AS may also be eligible to receive SSI if parental income is low, or SSDI if a parent has died.
by an Aspie who is in high school
Throughout my life it has been a struggle everyday to find that one point, where I could feel comfortable and pleased with myself. Where I would know the functions of the world and who I truly am as person, and be “normal.” Though I have never reached that point yet, I have a lot to show you about the life of someone who has Asperger’s, so one can see the world in the eyes from a different perspective.
Ever since I was little, I did inappropriate things without realizing what their effect was on other people. I couldn’t think intuitively, but I did what I felt on the tight string of an impulse. I used to hate getting help from therapists. I always thought that I had to be the best at everything. If I didn’t get what I wanted, I would break down. I felt I had nothing wrong with me, except that I wasn’t the best, or couldn’t be. It was frustrating trying to compete with everyone to have the best grades, be the tallest, and most popular. Generally, I would not escape that competitive edge and I was described as thinking that a game wasn’t a game, but my life revolved around it. I hated when teachers corrected what I did. I thought that the assistant teachers were spies, who watched every move I made and wrote notes on even the twitch of my thumb. To avoid them, I used to hide.
In the beginning of middle school, I was told that I had Asperger’s Syndrome. I thought that was a burger with your butt in the middle and it was very ugly. I hated being referred to by that term. Also around then, I first heard about team meetings. That got me really upset, that I didn’t know everything that went on about me, but my parents did. I also started my grade obsession, competing to have the best grades in the whole class. To this day, I continue to be obsessed with grades, but less severely. In middle school, I got angry if I got anything lower than an A, since I usually got A’s. I would throw temper tantrums if I got a B+, and sometimes an A-.
People in school ignored me. I felt lonely. I thought everything was fine with me, and I cried that I should have an aide another year. When I got older, I would realize all this fighting with others would be a disadvantage for my future. I avoided saying hi to the guidance counselor, afraid that I was be the only one who had to sees her. She mortified me, especially in front of my friends and people I had crushes on.
In 7th grade, I finally realized that I needed to work with my SPED liaison to improve my social skills. I wanted to be accepted by my peers. Every week I would go to her and it would give me great success. . This year, not only did I accomplish great things socially, but I became very mature and I was able to make new friends and finally observe the world and what was going on with my social problems.
That year, however, I had the stress of my upcoming Bat Mitzvah. I also had to take allergy medications, which made me drowsy. And I started becoming obsessively interested in members of the opposite sex. I became infatuated with this trumpet player and I found valve grease or “trumpet oil” near my seat. I fooled around with it at a concert, and it got me in serious trouble. Not only did my friends not want to talk to me, but I had no one who I could rely on really.
In 8th grade, I took the “boy craziness” to a new level. I began to write poetry about these guys that I would like and think about them every day. I had barely any friends and it was probably one of the hardest years for me. Many kids started dating and I felt left out. I would obsess why I didn’t have a boyfriend and become very depressed. Even though I did manage to flirt with a couple of guys, my female peers rejected me. I began to realize that some boys I liked were put off by how I pursued them. I got jealous over a girl who had a crush on my long term crush and best guy friend. She flirted with him and dropped me as a friend. In addition, my parents got divorced, which left a hole inside my happiness.
My first year of high school wasn’t much better. I did make a lot of friends, who had special needs, and other people older than me, but I still was obsessed with guys. I would dress, try to impress, and dream about them TOO MUCH. Unfortunately, I told two people, who were family members of my crushes that year; the guys were very rude to me and scoffed at my existence. Upset by the way peers rejected and bullied me at school, I became abusive to my family. Then I had to go to a social skills groups to stop my social regression. Before going to these groups, I thought that the kids in them were social retards; today I laugh at the prejudice I used to have. The group greatly helped me. I developed new friends and new skills.
The thing that helps me the most is that one summer, I worked with a social skills counselor, who has helped prepare me for real life situations. Currently, I am working avidly to improve my social skills. I am trying to listen to my parent’s cues and make contact with my friends. I am learning how to be less self-centered and be part of a family. In addition, I plan to help and advise others with my disability. I am proud that I was able to survive all of this and grow.
I advise that people who have Asperger’s should work hard with their disability. Never give up. Don’t complain about being different: someday you will be a very successful person. It takes a while to develop your social skills, but have patience and then you can succeed. Practice social skills by going to pragmatic groups, therapists, psychologists, or psychiatrists. Try to think positively and find ways to stop anxiety by doing things that work for you, such as listening to music, or doing something else you enjoy. Try to filter what you are saying and see how things affect others; be observant of your world. Listen to other’s suggestions. Help the less fortunate. Advocate for yourself. I hope that all the time and effort you put into working with Asperger’s will pay off and you can become successful later in life.
by Debi Baron
Oh I love the word eccentric
and how it rolls off the tongue
so much better than
neurologically challenged.
There’s a much longer name for it,
a diagnosis if you will,
found in books
he will no doubt read someday
if only to find amusement
in typographical errors.
He loves to draw timelines
and anatomical sketches,
and to know the detailed life stories
of his everyday heroes
Leonardo DaVinci and Charles Darwin.
Sometimes he draws maps
of Pangaea and the world today as well.
He sings songs to his dinosaurs in the bath
explaining to them with great scientific accuracy
how they became extinct.
He is seven years old
and keeps me on my toes
challenging me
to think within his box.
I
Sunlight tickles my eyes.
Dancing dust whirls around me,
wrapped in a blanket of ice blue sky.
Glass beads pool in my hand like water. I spill them out,
follow the sparkling flow.
Cool to touch, they soothe my soul.
I sort them in a pattern only I could know.
II.
Faces blur, features indistinct.
I recognize a voice, a walk.
Talcum and lavender breeze past.
I rock forward and back,
watch a gold star
cast six-pointed shadows across my desk.
III
Words weave spells, spider webs
strung across the rafters of my mind.
Stories stuck to sticky threads, fill my head
with worlds of wonder. I inhale books
breathe their soft spicy scent.
Flip smooth pages back and forth across my face.
IV
Red rover red rover don't call me
over and over I walk along the playground fence,
slap my hand against cold metal links.
Only this chain unbroken.
V
I press glass shards together
bit by bit into a mosaic of memories.
Fingers raw, soul splintered,
I bleed the wounds clean.
© Lisa Janice Cohen
See more poems at www.bluemusepoetry.com
by Valerie Paradiz, Ph.D., Program Director
ASPIE - the School for Autistic Strength Purpose and Independence in Education
In Boiceville, New York
Adolescence is an important time of growth in any young person’s life. It’s a vulnerable time, during which self-esteem can be exceedingly fragile. For teens with AS, HFA or PDD, the quality of support and education they receive during this formative period can make or break future success as an adult, be it on the job, in relationships, or in independent living. While more and more young Aspies (a term coined by Asperger self-advocates) have access to crucial social skills curricula and practice of social skills in schools, opportunities for building self-advocacy skills are scarce.
Self-advocacy is a life-long endeavor, and the teen years offer a particularly fruitful moment for cultivating self-awareness, self-monitoring, and deeper exploration of what it means to be autistic, by way of peer discussion groups. Self-advocacy differs from advocacy in that the individual with the disability self-assesses a situation or problem, then speaks for his or her own needs. Learning how to do this takes practice and direct instruction. Too often, we raise our kids, treat our patients, and educate our students without ever speaking to them directly about autism. Perhaps we’ve made assumptions or even harbor fears that they aren’t capable of self-reflection. Yet if we deny kids this very important aspect of identity, we limit their ability to become the successful adults we want them to be. As with any academic subject, teaching self-advocacy takes training as well as knowledge of and respect for the disability movement. Parents can model self-advocacy at home, teachers can offer curricula in school, and most importantly, peers on the autism spectrum can offer strategies for good living and share mutual experiences.
I’d like to talk a moment about these fellow-travelers on the spectrum. Increasingly, adults with AS and HFA are coming together with the recognition that autism is not only a medical, neurological or psychiatric condition, but that it is a way of life possessing a particular culture and history. Many peer support organizations run by autistic people for autistic people began springing up in small pockets around the country in the mid 1990s, around the same time that AS was first included in the DSM IV (Diagnostic & Statistical Manual).
The first known peer support group, AGUA, was founded by Jerry Newport in Los Angeles, where he also met his future wife, Mary Newport. Soon thereafter the couple became important voices in the self-advocacy movement, authoring two books that offer important insights and advice on learning many adult life skills. In San Francisco, Adam Pollack developed the AUTASTICS. Here in New York State there is Autism Network International, based in Syracuse, which hosts a retreat each summer in the Adirondacks, offering conference workshops presented by and for folks on the spectrum. Finally, there is GRASP, a new non-profit in New York City, directed by Michael John Carley, that is about to launch a major campaign of setting up peer support groups across the nation, conducting a large scale outreach campaign to educate the general public about Asperger’s syndrome, and offering a list of speakers who can visit communities, institutions and schools as a means of modeling successful adult living. GRASP is also putting together a database and referral list of professionals, schools, and services that pass standards developed by folks on the spectrum.
At ASPIE, we have culled information from many of the sources I’ve mentioned here to create a self-advocacy curriculum for our students. Some of our kids weren’t aware of their diagnosis until very recently. Others have known for years, though they really haven’t had the opportunity to learn what autism or Asperger’s Syndrome is. At ASPIE, they are now beginning to get a good working knowledge of autism’s medical and psychiatric history, and they’re learning about important role models, both living and dead, from Albert Einstein to Andy Warhol to Temple Grandin. They also have the opportunity to speak about their strengths and about the challenges they face, and to share difficult, often traumatic experiences from the past, which they had no previous opportunity to discuss with peers. This process can carry a fragile teen from a place of shame and fear about his or her difference, into a more powerful position of self-knowledge, self-expression and the confidence everyone needs for a successful adult life.
To give a few examples: Students at ASPIE have been learning and discussing key terms like “perseveration,” “eye contact,” and “sensory sensitivities.” With time and practice, they have begun to have words for experiences they often didn’t understand in the past. Important self-advocacy concepts, such as neurotypicality and self-disclosure, are also explored in a safe, confidential group setting. Our students are beginning to see that, along with their parents and professionals in the autism field, they too have a perspective on their own lives, and one day they will be “experts” on themselves! In essence, they are practicing crucial skills that are the foundation for future success in employment and living situations.
In addition to the examples I’ve mentioned, our self-advocacy curriculum at ASPIE features:
AANE hopes that Valerie Paradiz will be able to speak in the Boston area in 2004-05, and show a 15 minute videotape of a teen discussion on self-advocacy produced by Taima Smith, MA, Media Studies an Indie/ASPIE digital media specialist.
by Susan Shanfield, LICSW
Susan Shanfield wrote and presented this talk at AANE’s Celebration of Community on March 7, 2004.
Hi Everyone. What an amazing experience that we women and girls are gathered here together to celebrate our strengths and differences—and I think that we’re making history at the same time. Usually with Asperger’s, the boys get all the attention. However, one in five people with AS are women. My daughter and I are two of them.
I always think of my family’s situation as unique, but maybe it’s not as unique as I thought. My son and I have Non-Verbal Learning Disability, NLD. My 16 year old daughter has Asperger’s Syndrome. So, some funny things can happen in our family, as you might well imagine!
But first let me backtrack. As a child with NLD back in the 1950s, from earliest memory I knew I was different from everybody else. All the other kids were having a blast playing, jumping and running around. I was extremely self-conscious and couldn’t imagine what to say to other children. This playing was supposed to be fun? I didn’t get it. The only child I did enjoy was my little sister—16 months younger—and she was a god-send. We were best friends—and still are.
Then there were organized games. Guess what? I was awful—horrible—the worst in the class. I couldn’t kick the ball and was always tagged at duck–duck–goose. In baseball, my own team tried to hide me and the other team would gleefully accuse them of doing so. Primary school was a blur of humiliation. But—not quite. I was an excellent student, especially in English and history. I loved to read and spent many hours of pleasure with my books. I also realized I had a talent for writing, which was very satisfying and helped me feel better about myself. In those days, no one knew about Asperger’s or Non-Verbal Learning Disability. The psychologist said I had “minimal brain dysfunction”. Oh yeah, and one other good thing…I was very kind-hearted and really felt for other children and adults who had special problems.
As I grew up, things gradually got easier, especially after adolescence was over. I became less shy and my self-esteem rose. I decided to become a social worker in order to help others who were struggling. To this day, it has been one of the best decisions of my life. I think my ability to be sensitive to others might not have been as strong, had I not had the learning disability or, should I say, “learning difference”. Today, I have a private psychotherapy practice, which is enormously satisfying to me.
In my late 20s I married and had my kids. My son was a handful. He didn’t seem to like other children at all and was often irritable and gloomy. He also needed constant attention. There was just something different about him. When they wanted to test for problems in second grade, I was highly insulted. “He’s fine” I said. “We’re all like him in our family”. Was I surprised to find that he indeed did have something called Non-Verbal Learning Disability, which involved deficits in understanding visual information, sensory integration, and poor fine motor skills! I looked at my husband and said “I think I have it too”. Sure enough, testing confirmed it. I was able to see my childhood in a new light. No wonder I had all those problems. I wasn’t just backward or clumsy.
My daughter was a different story. A very happy child, she was able to entertain herself for hours with her stuffed animals or just playing imagination games. We would often hear her running around her room, jumping off her bed and carrying on a conversation with herself. As she got older, we began to worry. “Should she still be talking to herself like that?”
But she was awfully cute—just a little different. She didn’t show much skill in playing with other kids, either, although she really liked them. Eventually, by trial and error, we managed to find a few compatible friends. She was smart too—and a wonderful writer—even better than her Mom! But, by the time she turned 13, everything went wrong. She no longer had friends, she was extremely anxious, and she had terrible mood swings. She was always impulsive—but things were getting dangerous. By seventh grade, she had been suspended many times for “inappropriate behavior.” You can imagine the many therapists, doctors, etc. we took her to. I could tell you some terrible “war stories” about them.
Finally we got a diagnosis. She had Asperger’s Syndrome and my husband and I became experts. We had to interpret her behavior to teachers, pediatricians, and others. There were so many stupid comments which people have made to us and to her. She is doing better now but has a long way to go. She still won’t admit that she has Asperger’s—she finds it too shaming. She’s in a special program at Newton North and she loves it. Gradually, things are getting better.
Now, for the survival strategies in this family where three out of four of us are on the spectrum:
I think we actually do very well—better than a lot of people out there who do not have Asperger’s or Non-Verbal Learning Disability!
So, all in all, it’s not always easy to be on the spectrum, but with resolve, compassion for one another, and a little sense of humor, we can not only get by—we can actually flourish!