Moving Into the World of Employment

Contributed by Cathy Pratt, Ph.D., Director and Chris Filler, Professional and Parent, Ohio from Indiana Institute on Disability and Community

Every three years, the Indiana Resource Center for Autism (IRCA) is legislatively mandated to conduct a needs assessment survey. As part of this survey, families are asked questions about topics such as insurance coverage, Medicaid waivers, impact of educational programs, interactions with the criminal justice system, and other relevant topics. The past two surveys have asked family members with children no longer attending school programs about the employment of their sons/daughters on the autism spectrum.

In 2006, the IRCA survey showed that 61% of individuals (over age 18) represented in the survey were unemployed, 14% worked in sheltered workshops and 25% worked in community jobs. Those who are currently employed work an average of 21 hours per week and have a median annual income of $6,516. This figure is troubling considering the dramatic increase in the number of those receiving educational services under the eligibility category of ASD, and the realization that this population will soon be entering the adult service system en masse. It’s also troubling because it illustrates the misunderstandings among many professionals concerning the realities and range of ASD.

Families advocating on behalf of their sons/daughters on the spectrum will come to realize that many adult providers have not received current and accurate information on autism. This lack of knowledge will impact eligibility and the types of services the person will receive. Below are 10 recommendations of information that adult service providers will need to know.

  1. Adult service providers need a thorough understanding of ASD, the spectrum and the diagnosis. It is not unusual for there to be tremendous misunderstandings about Asperger’s and those at the “upper” end of the spectrum. Often these individuals are perceived as being willful or manipulative. For those with more significant disabilities, there is a misunderstanding about the potential gifts and talents they may possess. Adult service providers must understand the complexity of ASD, and that there are no generalized services that will work for all. They must understand that ASD is neurological and not a mental illness or emotional disorder.
  2. Those with ASD require a creative and careful assessment process. Many people with ASD often have unique skills that are not necessarily obvious during a traditional assessment process. They may possess skills suited for a specific “niche” that could lead to successful supported or competitive employment. Identification of these skills often occurs through careful observation, interviews with those who know the person well (e.g., family members or the individual him/herself) and a longitudinal assessment process. Several hours of traditional assessment or a checklist of vocational skills often misses the person’s unique and most important strengths.
  3. Be willing to think “outside the box.” Traditional vocational programs are not always the most appropriate or successful. Vocational/employment programs, supports and services all too often seem to be offered in terms of available options, instead of what the person needs and is interested in doing. Due to some people’s narrow focus and need for functional routines, there are situations when all of the available/traditional options for employment are equally unsuccessful. Sadly, there are times when a person is forced into an inappropriate setting and fails miserably. Agencies may then conclude the person is unemployable, rather than searching for a job match that acknowledges skills and talents. Do not assume that the person with ASD that struggles with communication and socialization has that same level of challenge in all areas. In fact, assume the opposite! Many areas of skill will be significantly more developed than social-communication skills.
  4. Be aware of sensory processing challenges. These challenges often limit many with ASD if gone unrecognized and un-accommodated. The person with ASD’s perception and ability to tolerate or cope with the sights and sounds of a typical work environment can be quite different than that of their co-workers. Accommodations can be made and coping skills can be developed. However, this does not happen automatically, quickly or under threat of losing a job. In fact, the person will likely shut down or quit rather than deal with the situation or attempt to explain the difficulties. This does not mean that the environment needs to be silent or rigid. It does mean that opportunities to periodically leave a stressful environment should be available and without consequence. Environmental control or accommodation can dramatically change the quality and quantity of the work or product, while presenting the person in the most positive light.
  5. Build on strengths. This should be the philosophy when working with any person. However, the strengths of those with ASD may be less obvious and may be more narrowly focused than those of others that come to the attention of agencies that provide employment services. Rather than addressing deficits, opportunities should acknowledge strengths and interests, when possible.
  6. Prepare, prepare, prepare. Be certain the person understands what is to happen during the assessment, work site trials and work training processes. Some require visual supports to assist in this area. Others may need to visit and explore the environment. In some cases, a verbal description and explanation of the situation, schedule and expectation may be sufficient. However, always err on the side of concrete and visual supports.
  7. Communication should not be all talk. Fewer words often are better. People have a tendency to talk too much to folks on the spectrum, regardless of whether the person is verbal or not. They assume that a verbal person will be able to understand verbal expression equally as well as other employees. This is misleading as some with ASD may use many words, but have limited receptive language. Be prepared to use more written and concrete communication and directions. Develop schedules, visual sequences of tasks, and information about the written and unwritten “rules” of the work culture. Employers and co-workers should be aware that the words they say may not communicate meaning as much as environmental reminders and cues. And finally, realize that many of these individuals do not understand sarcasm, innuendos and double meanings. As a result, the directions that we provide may be confusing or meaningless.
  8. Consider carefully the environment and predictability of the job. Workshop-type settings often are the worst for those on the spectrum. These settings typically contain many people, loud noises, and a lack of privacy or a place to get away. Even the person that seems less capable may perform better in a community setting with support than in a sheltered setting. Intermittent employment may not be a good idea either. Seasonal, ever-changing jobs increase the likelihood of anxiety, stress and behavioral escalation. This does not mean to place the person in a boring or static situation. This does mean that the predictability and stability of the employment will go a long way in creating an efficient and successful employee. If the job is one that offers change, use environmental and organizational supports to create predictability and structure.
  9. Social expectations require instruction. Social challenges are a hallmark of the ASD diagnosis. These challenges extend beyond the school years and can dramatically affect the person’s ability to successfully integrate into a work setting. Be prepared to help the person understand the social expectations (“rules”) of the job. These often are “unwritten” or “hidden” rules of the work culture, and can be critical for acceptance. Do not assume the person will “read” the social climate and adjust. It will not happen. Instead, prepare the person by teaching expectations. Rehearse how to greet, ask for help, “small talk,” compliments, etc. The employer should be aware that if social errors occur on the job, these should be calmly addressed in a very direct manner. Subtle suggestions will not work.
  10. Systems must work together (delays can be deadly!). The traditional “hand-off” between school and adult services over a few weeks or even several months often ends in delays in service or employment, misunderstandings and even failure in achieving a successful outcome. Agencies must work with schools to identify students early, begin to actively work with the school team to get to know the student, and begin to identify adult services and potential employment. Timelines vary from state to state and agency to agency. Funding and eligibility requirements may get in the way of a smooth transition. It goes without saying that funding will always be an issue. However, agencies must begin to create opportunities to work together systematically so that the transition is “seamless,” or at least does not unravel all together.

One final thought for family members: As your son or daughter moves from the public school system, which has clear legislative entitlements, to the adult world of eligibility, it is important to have a vision for your child. Examine the possibilities. An issue of the Autism Advocate highlights stories of success that occurred because family members pushed the system and expected a different type of future for their child. Hopefully, these exceptional stories will become common occurrences someday.


Pratt, C. & Filler, C. (2007). Moving into the world of employment. The Reporter, 12(2), 1-2, 13.

 

Getting a Job with Autism – Preparing for the Real World of Work

by Chantal Sicile-Kira

Editorial Note: This article originally appeared in The Autism File in February 2009 and discusses Chantal’s son, Jeremy Sicile-Kira. Find out more about Jeremy here.

“Jeremy does not like jobs with physical activities but likes to work with ideas and be able to tell others what to do…. As the case manager, I see Jeremy’s strong assets like working data, communicating with people to purchase/buy/manage a business. He is able to do gross motor activities, but often finds fine motor activities difficult and frustrating. Jeremy needs more opportunities exploring jobs and finding out what he would do to have fun and earn money.  These last two ideas are very important to Jeremy.”

— Allan Gustafson, Interview with Jeremy Sicile-Kira
Transition Year 07-08

Like all parents, my husband and I worry  about our son, Jeremy, and what his future will look like. Jeremy is now 20 years old, and with  the economic situation being what it is, we are doubly concerned about the financial aspects of Jeremy’s  life as an adult. But as the saying goes, worry gets you nowhere – fast. Preparing, planning and creative thinking is a better alternative to wringing our hands.

When thinking about employment for your child or student  on the spectrum, there are a few  aspects that need to be focused on:  the life skills he or she needs to learn; a clear understanding of what employers look for in an employee; the interests and strengths of the person on the spectrum; the usefulness of mentors; and the different employment structures currently available.

Necessary Life Skills

In my latest book, Autism Life Skills : From Communication and Safety to Self-Esteem and More – 10 Essential Abilities Every Child Needs and Deserves to Learn, the ten skill areas covered are important for all aspects of life, whether  at school, at home, or in the community. Some of the skills  such as self-regulation, independence, social relationships,  and self-advocacy are  important  for getting and keeping a job. The topic of earning a living is the last chapter in my book, because being able to get and hold a job  is really a culmination of  all the life skills  hopefully learned during the school –age years, whether a person is on or off the spectrum. For example, for someone to be accepted in a workplace, they must be able to control their emotional and sensory meltdowns. A certain amount of independence is needed at most jobs. Understanding that you should speak to your boss differently than you would to  a colleague is important to know in most work situations. Self advocacy skills are  necessary in order to request what you need to get the job done.

Life skills in general  should be broken down and translated into IEP goals and objectives, especially during middle school, high school and  transition years. Obviously, everyone is different and the skill level reached for each of these skills is different depending on the person, but every student needs to learn a minimum in order to live and work in the community.

What Employers Look for When Hiring

Too often,  when  looking for a job placement for  a person on the spectrum, people take the approach of asking for handout, or a favor. We need to  approach this differently. I took a look at the top 10 skills and attributes most employers  look for as identified by the Bureau of Labor (Job Outlook, 2003) and I discovered that many of those attributes are attributes people  on the spectrum have, yet rarely do we sell those attributes to prospective employers. Here’s  the top ten of what  employers look for: honesty and  integrity; a strong work ethic; analytical skills; computer skills; teamwork; time management and organizational skills; communication skills (oral and written); flexibility; interpersonal skills; motivation / initiative.

Now, many of you reading this are probably  focusing on the skills in this list your child or student does not have. Look at it again, and think about what attributes your child does have. For example, most people on the spectrum are honest to a fault – they are usually  the ones in the store saying “yes” when a woman trying on a dress says “Does this make me look fat?”  They are not the employee who will be caught with his hand in the cash till.  That’s a positive point to sell. A strong work ethic applies to most of our guys – the ones who do not like a change in routine and are going to be there rain or shine. They will not be calling in sick because they had one too many martinis the night before, or leave early because they have an event to attend.  Analytical skills are really ‘obsessive attention to detail,’ and many of our children have that. The child who likes to line up blocks and trains probably has good organizational skills. Teamwork and flexibility are difficult areas for many, but we should be teaching flexibility at school (there are ways of doing that), and teamwork can be handled by ensuring the person on the spectrum has one person on the team that he is in contact with for all needed  information. Many of our children with Asperger’s are good communicators, and some have become journalists, speechwriters and professors.

The point is, when people are selling a product and/ or service,  they market the positive attributes,  not the negatives. And that’s precisely what we need to be doing with any prospective employees on the spectrum.

The Child’s Interests and Strengths

It is extremely important to consider what your child or student likes or is passionate (ie obsessed) about and figure out how that can help him earn money. In most cases, people on the spectrum can be difficult to motivate – unless it involves something they are really into. For some, it is quite obvious what they are particularly interested in because they don’t let you forget. The trick is to figure out how to use that interest and turn it into a moneymaker, or to find a career field that can use that particular interest or talent. That’s where mentors come into play (more about that later).

For most on the spectrum, a job will be their one connection to the community, and their main activity. If a neurotypical hates his job, he usually has another aspect of his life that is bringing him pleasure – his family, his church, athletic activities. However, most on the spectrum do not have family or friends or many outside groups they belong to, so it is important to help them find work that will fulfill them in some way.

There are those for whom it is fairly obvious what they are passionate about. For many like my son, Jeremy, it is a much less obvious. There doesn’t seem to be anything he is particularly obsessed about  that could lead to employment.  He used to love to spin tops (physics researcher?), and to follow the patterns in carpets and floor tiles (carpet checker in a rug factory?), now he is mostly focused on communicating about girls with his support people (beauty contest judge?). However, by having different people work with him or observe him in different environments, we have been able to come up with ideas to try out, and jobs  to avoid.

When thinking about Jeremy’s future money- making potential (either in a job, customized employment, or self-employment), we thought about the different strengths and weaknesses Jeremy had.  The questions we asked ourselves  are the same that most people should consider when helping someone on the spectrum who is considering employment. For example, we asked:

  • What is Jeremy usually drawn to?
  • Is there a particular  subject area or skill area that  Jeremy excels in?
  • What, if left to his own devices, does he like to do most?
  • What motivates Jeremy to do what he does?
  • How successful is Jeremy at  self-regulating? Does he need to work in a place with low sensory stimulation?
  • What kind of situations cause Jeremy to feel anxious?
  • What do Jeremy’s organizational or multitasking skills look like?
  • Does Jeremy do better in crowded environments or when there are fewer people around?
  • Does  Jeremy like moving around, or staying in the same place?
  • How many hours a week of work can Jeremy handle? Will he be ok with a 40 hour a week job, or does he need a part time job?
  • Does Jeremy like routine and the stability of  doing the same thing every day, or does he like change?

Jeremy is interested in the concept of self-employment and did well in two self-employment experiences he tried in high school.  He had a lot more control over his environment and what his daily tasks consisted of then he would have had in a regular employment situation. However, if he were to apply for a job, there are  many questions he would need to ask an prospective employer (or someone would have to ask for him)  during the interview process to ensure a good fit between himself and the job as well as the work environment.

The Importance of Mentors

Mentors can help figure out how to turn an interest into a job, or  into a means to earn money. Temple Grandin (Thinking in Pictures; Developing Talents) speaks often about the importance of mentors in helping to turn interests into marketable skills.  That is what helped her become the success she is today.  Temple had mentors  from her science teacher at school to her aunt, from family friends to colleagues who were crucial to her success. If your child appears to have skills or  a real interest in a specific area,  someone  who works in that field   can help  the child  realize the application of his interests.  Parents may realize their child’s talent, but not know all about a certain employment area.

For example,   a child may enjoy spending hours on the computer, but  his parent who is a taxi driver or a school teacher or an attorney, may  not know anything aobut the field of computers and employment possibilities. Someone who works in computers – perhaps a tech guy the family knows-  can give insight to what is  applicable  to someone with  that child’s talents.

Mentors can also help a student feel valued as  that person will be interested in the same topic he is and will enjoy hearing what the child has to say, whereas family members  may be tired of hearing about a topic they have no interest in.

Different Employment Structures

There are different employment structures currently available and by analyzing a person’s strengths and weaknesses, likes and dislikes, and by asking some of the questions above,  a clearer idea of what could be a good match with the person on the spectrum is possible. There is full-time work, part-time employment, seasonal work, year round employment and so on.

Other less traditional structures  are becoming more popular, and this is probably in response to the realization that most adults with disabilities are unemployed. In 2002,  unemployment figures for disabled adults hovered at 70% and had done so for the previous 12 years (2002 Report by the President’s Commission on Excellence in Special Education).   This report showed us that besides needing to do a better job of preparing our students for employment, meant we also had to start looking at other employment structures more conducive to individual employee needs.

One  less traditional structure  is customized employment, which  means that the work is tailored to the individual, not the other way around. It can mean job carving, where one job is carved up into different tasks  and shared by several people, giving each employee the part of the job they enjoy or excel at the most. Another type of customized employment is self-employment, which is sometimes referred to as micro-enterprise and  which basically means having your own business or being self-employed.  This can be a good  option for those who are having a difficult time fitting into  regular paid positions, or when there is no position available. This option is gaining popularity in the US as well as in the UK.  For some examples of self-employment initiatives by people with developmental disabilities,  visit http://www.incomelinks.biz/projects.htm.

Self Employment as an Option

Although I would encourage Jeremy to try  an employment opportunity that seems like a good fit, I am not holding my breath waiting for that job to show up on the horizon. I am not convinced that that much has changed since 2002 in the job market in regards to hiring disabled people, and certainly with all the neurotypicals now jobless, I don’t anticipate a huge rush of employers looking to hire my son.

I became interested in the concept of self-employment or micro-enterprise  when Jeremy was not offered any  work experiences during his first few years of high school, about 5 years ago. The workability person at the time felt that Jeremy was not ready for any of  the job options she had in the community.  His teacher, however, felt everyone, including Jeremy, had potential, and was open to creating a self-employment experience under workability. At that time, Jeremy could not communicate as readily as he can now, and so we had to  come up with ideas based on observations that people who knew  Jeremy made about his strengths and weaknesses, his likes and dislikes, and then ask him yes or no questions.

I had heard of people with developmental disabilities having their own business.  When the opportunity came, I  attended a workshop on the process and how it could work, and it made sense to me for someone like Jeremy.  It was clear that if workability was telling me there was not   a work experience opportunity for  Jeremy, I was going to have to create something for him  to learn “on the job” skills.

Jeremy’s teacher came up with the idea of starting a sandwich delivery service for the teachers, based on Jeremy’s strengths and likes, and the fact that by the end of the week, the teachers were sick of the on-site lunch option, and so there was a need for such a service.  Jeremy’s second experience was providing  a needed product (selling flowers to peers at school where no flowers were available on campus). By actually doing these businesses, Jeremy learned valuable business lessons.  These lessons were complimented by general education classes he took those semesters, such as a class on marketing and another one on economics. For his class projects he had to write papers on how he applied those principles to his job. Some of these lessons were:  the cost of doing business; the difference between a profit and a loss;  how marketing, location and  price affected the numbers of customers he was able to attract and keep. Jeremy also learned that if  he could not do all aspects of his job,  he had to pay someone else to do the parts he could not. In reality, it is these kinds of business lessons all neurotypical teens should be learning in the current economy.

That being said, self-employment is not for everyone and necessitates a business support team. The business support team can be made up of a teacher or parent, a paraprofessional, a mentor , a friend, someone who has business experience. Each person brings their knowledge to the team.   The business team helps to advise in areas the person needs help with, and also does parts of the business the person cannot, just as in all businesses (ie I pay a tech guy to take care of my website because I can’t). There are free resources, available on-line for those who are not experienced in starting up a business.

Looking at   self employment as an option sometimes leads to an actual job. The process of discovering a person’s strengths and weaknesses, can lead to discovering  areas of traditional employment that  had not been considered for that person previously. Sometimes it leads to a job offer  from a business in the local community that  the person had visited  to  get more  information about his area of interest.

Conclusion

Teaching children and teens on the spectrum needed life skills is a necessary  preparation to  life as a money-earning adult. Analyzing the needs of both the potential employee and employer, as well as looking at the different options in employment structures is necessary to ensuring a good match. Finding a mentor can help with a successful  transition to gainful employment.

This year, Jeremy is benefiting from two workability experiences while he is studying to earn his high school diploma. Twice a week he works at the local library (which he has visited on a regular basis for the last 10 years). Once a week he helps develop the business and marketing plans for the micro-enterprise experience that some of the other students are working on through workability. Jeremy  has come a long way thanks to all the different team members along the way who believed in his potential. It takes a village….