TRANSITION
To Work or Not To Work
Copyright © 1999, 2005 Roger N. Meyer®

      [This article was written shortly following my rejoining an email listserv mainly comprised of parents of Asperger Syndrome children. It has been slightly updated to reflect new findings about how work values are imparted to children at an early developmental age.]


    Over the past year I have maintained a small, private caseload of transition age young adults, and more recently have expanded the casework to include consumers of the Independent Living Resource Center (known in other states as a Center for Independent Living) in a peer-counseling person-centered caseload.

    What I am about to say regarding transition and employment for some folks with AS should be taken as a personal observation, but with an understanding that for two years I have lived and breathed the issues regarding adult employment of persons with AS, and have about a year's intensive casework under my belt with transition age young adults.

There are some persons with AS who cannot work.

    This is a painful message for some parents to hear. By saying this, I am not closing the door, nor do I wish to suggest that work isn't possible sometime in the future. The adult service system in this country can penalize some disabled adults in a way that makes working very difficult, often forcing the choice between whether the person wishes to remain on SSI or some other type of categorical assistance, or go off the assistance and take their chance in market-rate employment. This will be true despite the effect of the new Workforce Investment Act just passed but delayed for implementation by Congress.

    For the purpose of this discussion, I will not consider sheltered workshops or enclaves. Simply put, they are inappropriate for persons with AS, because the intelligence level and other high but uneven functioning levels of persons with AS makes AS adults extraordinarily bad candidates for such work settings.

In my support group in Portland, there are several persons of varying ages who have worked and are now on SSI/SSDI. Some of them tried work before going for eligibility; others had a lengthy work history and upon diagnosis, began to conclude that the challenges of work had such a profoundly negative effect on them that accepting entitlement assistance was and is preferable to regular market-rate work.

    Clinicians and others who really understand AS in adults recognize that there are some things we are capable of changing with the costs to be paid within the acceptable range of what we feel is tolerable.

    There are many AS adults not engaged in intensive therapy or vocational rehabilitation support who choose to make substantial changes throughout their lives, changes that make work possible. These adults believe they have the power to choose, and one of their choices is a decision to work. Exercising informed choice and using the power to act to control one's destiny in an important area of adult functioning -- working -- is one of the defining hallmarks of mature adult thinking and action. Even if an AS adult works alone, physically separated from other individuals in the workplace, inevitably the entire dynamic of work places the individual within multiple social contexts preparing for work, traveling, spending time during breaks, interacting with authority figures and with co-workers, if not the general public, that define the entire work experience.

    In today's economy, carving out work or creating a job with substantial gainful employment rewards for disabled employees is much more difficult than merely expanding the workforce during good times. Employers under special mandates to hire a certain percentage of disabled workers -- such as government or some disability-friendly non-profit businesses -- do expend the time and resources to create a disabled-worker-friendly workplace bycreating a position or combining tasks into a new job description well suited for a particular person or class of disabled employees. Providing there is adequate buy-in by others in the workforce, or a workplace environment favorable to supported employment, a disabled employee can thrive in such a setting, gaining genuine acceptance from his or her co-workers. While workplace policies and mission statements may set the tone, actual co-worker behavior on the work floor provides evaluators with "the real story" of successful workplace accommodations.

There are also a number of adults for whom patterns of dysfunctional behavior and processes of thinking bordering on thought disorder make it very difficult to understand the notion of employment. For them, isn't so much that they actively reject the idea of work, but they do possess a set of attitudes and behaviors intolerable to others in many typical work settings.

    Our society has plenty of such adults, only a few of whom are Asperger Syndrome. One need only think of career criminals, whose definition of work doesn't comport with non-criminal-culture ideas of acceptable ways of making a living. Drug addicts, serious alcoholics, and others not on the autistic spectrum have behaviors and attitudes affecting their ability to seek employment, get hired, and retain employment. If one develops an addiction or has a serious mental health crisis once employed, some employers have employee assistance programs that offer therapeutic support, including detoxification and mental health therapy. Providing the affected individual still has the essential desire to work, these programs offer a way back into the successful work experience.

    Let's look specifically at Asperger Syndrome.

    Given highly challenging behaviors and ingrained attitudes towards others that militate against acceptance in the overall world of work, reversing or modifying these behaviors and thought processes is a difficult, time-consuming task. It is possible to go for changes in both of these areas, but there are real-life barriers of time and the cost of professional therapy involved. True, there are jobs that don't place heavy social or other demands on persons, and many AS individuals do, in fact, choose those jobs.

    Job developers and other employment specialists whose careers are built on finding the right job for persons with difficult behaviors and thought pattern/cognitive limitations also recognize that they can't work with clients who aren't willing to accept work as a positive option. People most difficult to place, and those who routinely fail even the best efforts are the persons who routinely sabotage themselves at work, and the dynamic of continued self-immolation in the work place has a profound and difficult to reverse effect on them. They are often stuck in old scripts having nothing to do with their current employed status. For them, routine and comfort even with behaviors and attitudes that are self-destructive has such a pull that therapy, counseling, job coaching and mentoring come at too high a price.

In our economy -- indeed in most economies -- the provider determines the cost, not the recipient of these services. Faced with intractable behavior and negative attitudes toward work, providers can and do reach points of no return, ultimately deciding that despite their best efforts, they cannot work with such persons. They, not the client or the employee, decide that the individual is incapable of benefitting from their assistance.

    Such clients, among whom are a small core of Asperger Syndrome individuals, constitute a small minority in the disabled workforce pool. It's a fact of life.

    There are some young adults so traumatized by the effects of their AS that moving them in the direction of understanding what adult work is all about is a Herculean task. If they live lives largely occupied with fantasy and with little understanding of themselves -- meaning their deficits as well as their strengths and dreams -- they stand little practical chance of succeeding in the world of employment. A recent study of learning disabled adults tracked for over twenty years concluded that the difference between success in employment, and failure was the knowledge -- call it self-determination -- that people with learning disabilities had about themselves, and how they used that information to navigate the world of work. Individuals in denial about their limitations, and who perseverate about their deficits, who play the victim role, simply do not succeed.

    The study presents a very clear message. It is a rough lesson, but an important one to understand.

    I am not in favor of taking a sheltered child and throwing him or her to the wolves. On the other hand, the world of adulthood isn't peopled with selfless support persons or service providers without boundaries or budgets The role of an adult, disabled or able, is to somehow find a place in that world. This means facing reality early, not just at the age of 18 or 19.

    By reality, I do not mean ruminating on deficits or limitations. By reality I mean those understandings a person comes to in determining his or her place in family, school, the social schema, and the world of work and other adult functions, including intimacy, friendship, and belonging. Self-determination is personal work. No one can do this work for person with a disability, but others can guide the disabled person through the steps to arrive at better -- always improving -- understanding.

     In considering their child soon-to-be-an-adult and the choices facing him or her, it may be necessary for some parents to think not only of further schooingl, or employment, or a mixture of the two on the way to independence, but another real possibility: that their young adult may not work.

    Period.

    While there is pressure in our society -- and politics is behind only some of it -- to define an adult through independence and self-sufficiency, part of our understanding of disabilities rests upon an acceptance of the fact that some persons may not work during their adult life. Everything the child is trained for; every parental expectation is that the child-cum-adult will be an active person, a person whose life is defined by doing.

    It is important that we keep our eyes open to what we expect work to accomplish for adults, and given our greater understanding, not be harsh in our judgment of those who do not work. Hence, there is a note of finality worth considering, even in passing, for parents observing their children's passage through the stages of pre-adult development.

    Vocational rehabilitation, whether public or private, is founded upon the idea that if people with disabilities wish to work, they can, and should be provided with the means to even the playing field as much as possible. But if the "if" means that the person demonstrates a real unwillingness or current incapacity to understand the basics that accompany what work means in our adult society, there is always the question as to whether that person is an appropriate candidate for vocational rehabilitation. In a time of flat funding, vocational rehabilitation counselors -- private and public -- constantly make triage-type decisions about who can be worked with, and who can't.

    If the family has done a poor job or no job of preparing their adult child for adult life, the hands of even the most willing counselor are tied. If the person is an adult without substantial family or community support ties, the same process of client cherry picking for success is still in evidence.

    Research by career development specialists indicates that the average child has well-formed ideas about the value of work in adulthood by the time s/he is six years old. Those attitudes are largely influenced by family behavior and family values surrounding the whole notion of the meaning of work in adults' lives. If parents themselves are ambivalent about work -- and some are -- their ambivalence affects their children.

    Our children aren't average. Our families aren't "average" either. It is not unusual for one or both parents in an intact family to be so exhausted raising an autistic child or children that their exhaustion and exasperation has a profound impact upon their capacity to be gainfully employed and provide for their children. Between the rigors of work and real parental exhaustion experienced by children at home -- especially if parents vocalize their stressed feelings about work out loud in the privacy of the family setting -- autistic children may take in what they hear about work quite literally. We all know that as autistic children learn the meaning of words, they are often very literal in their understanding. They do pick up the tone of parents as parents express their feelings about work in the privacy of the family setting. At the same time, when adult words about work are overheard, and misperceived or misunderstood by an autistic child, there is much unlearning to be done in the later years.

    Sometimes this unlearning process is successful. Sometimes it isn't.

    Failure is likely if, by the time the child approaches adulthood, adults in the household still remain conflicted and outwardly ambivalent about the global values involved in being employed, whether it's by themselves as self-employed persons, or as adults in the employ of others.

    I know this to be the case because I've had to deal with the outcome of parental exhaustion -- and undiagnosed parent Asperger Syndrome -- on the fate of two young adult children with whom I worked recently. One is sufficiently low functioning to have had his SSI continued as an adult. The other child, brighter and more worldly than his younger brother, developed just enough adult coping and "faking it" skills, along with his mother's sour attitude about work, that throughout his case's development as his Social Security representative I remained doubtful about how his surface level high functioning in the world would play before the SSA administrative law judge -- despite his failure at one brief stint at employment in a retail business owned by a spinal cord injured employer.

    That employer knew the meaning of challenge. He understood that he had built-in awareness of people's "can'ts" because he had so many of them. He knew the importance of attitude, because prior to his automobile accident as an adult, he had a positive attitude towards work. He knew what he wanted out of life, and disability be damned, he wasn't going to let an accident deter him from living his life fully as an adult. As a small business person, he got to know his young employee very well, but after four months of part time employment, patiently adjusting the complexity of his employee's tasks and work schedule, he had to let his employee go.

    This young man's Social Security hearing was a disaster. He blindsided me several times with information he had not revealed earlier -- information that gave the judge reason to believe he was a malingerer. I knew he wasn't. This was full blown Asperger Syndrome defined by a deceptive "appearance veneer." While the judge may have come into the hearing room already in doubt about this young man's multiple impairments as impediments to work, my client's performance -- almost bravado when directly examined by the judge -- was palpable. He had an "in your face attitude" towards authority I hadn't previously experienced in my many months of work with him. Because of his family upbringing heavily influenced by his mother's long history on SSI and his limited choice of friends, all SSI recipients who did not work, this young man believed that the world owed him a living. His mother did. His friends did. How was he to know any different?

    Sensing that the hearing would go from bad to worse, I deliberately drew out the judge's bad conduct towards my client. Talk about making lemonade out of lemons! My appellate brief to the Appeals Council in Richmond, Virginia concentrated on judicial misconduct, on deficiencies in procedural due process, in addition to the mental health material in the record the judge overlooked when finding against my client. The only reason the client may ultimately prevail and be awarded benefits is that the judge demonstrated such unprofessional conduct on the bench that his conduct alone recently won a remand of the case to be heard before another judge. My hope is that the client will get a hearing this next time around, rather than a one-sided sit-and-squirm lecture from the bench.

    Many young and older adults are not prepared for independence -- of which work is only one element. They require substantial living-in-the-adult-world life skills work prior to and during any consideration for their candidacy for employment. This observation doesn't diminish the responsibility of transition specialists and vocational rehabilitation counselors to help, but without a parallel support system being built or in place, the best vocational counseling work counts for naught.

    Even with a best shot including extensive life skills training, some people simply don't make it. Society owes itself a serious discussion about whether its expectations for adult success are valid for such persons. The moral opprobrium attached to such persons because of their not earning an income as adults warrants revisiting and reflection for each individual on a case-by-case basis. Stereotypes about the value to society of such persons with disabilities can only be reduced through their holders' involvement in the lives of disabled persons.

    "Not working" does not mean that the person is not a candidate for adulthood, or for seeing his or her contribution to society through a different lens than that traditionally defined as work.

    As parents and their soon-to-become-adult children weigh the options, and size one another up in the new light of life beyond K-12, or even K-16, this small question may intrude more constantly in their thoughts:

    Will my child -- will I -- work as an adult? The answers to that question raise huge issues, and now, rather than later, is the time to explore them.

Copyright Issues

This article is copyright, all rights reserved by the author, Roger N. Meyer.  It may be reproduced in single copy once for personal use, and in no more than ten copies total for educational purposes.  Fair Use is authorized for all purposes and under conditions established by US Statute and the International Copyright Convention, to which the United States is a signatory nation.  No person shall publish, distribute, copy, or by other means make this material available to others for purposes of personal gain or professional self-aggrandizement.  Individuals wishing permission to exercise other than fair use or limited distribution as outlined above must contact the author, in writing, and receive explicit written permission from the author prior to engaging in further use of this material.