Asperger 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.
AS is characterized by three clusters of symptoms or general kinds of difficulties that can directly impact employment:
- Difficulty processing sensory input (sensory integration).
- Difficulties understanding social intercourse (theory of mind).
- Differences in “executive function” (organizational skills) and cognition/information-processing skills, such as difficulty appreciating the “big picture” (“central coherence”).
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.
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.
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:
- Particularly generous and flexible teachers.
- Accommodations and modifications such as graphic organizers, semantic maps, previewing, reinstruction, extra modeling, duplicate sets of books and materials, extra reminders or prompts, extended time for assessment or for assignments, and/or a reduced workload.
- A one-to-one aide, smaller class sizes, and a longer school day or school year.
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:
- that is quiet and predictable, and allows for sensory retreats.
- that is low in social demands.
- that provides a great deal of explicit supervision from an informed, compassionate boss.
- where a special, more technical or concrete skill or interest is employed.
- where there is less need for exercising “common sense” or
- engaging in conventional thinking.
where time or productivity pressures are relatively low.
Even so, for some adults with AS, competitive full-time employment may not be a realistic option, because the right match is not available, or because no workplace is able and willing to provide the kinds of accommodations or levels of supervision they require in order to succeed. Others may require additional preparation or special “sheltered” pre-employment experiences before they are ready for part-time or full-time employment in a mainstream workplace.
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.
- Some individuals with AS may suffer as well from anxiety, depression, OCD, ADHD, tics, or seizures. By themselves these symptoms or conditions might not be disabling, but they may make work impossible in combination with AS.
- Some are overwhelmed or even injured by the stress of coping with an uncongenial work environment, and/or by their repeated work failures. When someone has had several work failures and/or has had a significant worsening of their physical or psychological health because of work-related stress, they may require relief from work expectations in order to have some balance or quality of life. For them, it may be necessary to consider alternative support, such as disability pension benefits.
- It may also be clear that certain young adults with minimal or no previous work attempts will probably not succeed at any kind of conventional employment, and are better off not attempting the impossible.
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 sendgeneral 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:
- The claimant has not been performing “substantial, gainful work.”
- The claimant has a “severe impairment.”
- The severe impairment has been limiting, or is expected to limit, employability for more than twelve months, and fits into a specifically described set of disability problems that are considered clear indications of total unemployability.
- The disability problems have prevented the claimant from doing relevant work in the past, and considering the residual mental abilities (age, education, and acquired skills) it is not reasonable to expect the claimant to work
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.
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.
This article was originally published in the Asperger/Autism Network.
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 FREE.
Children with AS may also be eligible to receive SSI if parental income is low, or SSDI if a parent has died.
By Kate Collins-Wooley, Ph.D.
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