By Zosia Zaks, M.Ed., CRC
Introduction
I recently heard that 97% of adults on the autism spectrum in the United States are not working. I don’t have the source for this data. Even so, we all know that the rate is too high. Something is amiss.
I believe that all adults can work and need to work. Work is more than just earning money to survive. Adults want to do jobs that make them feel proud. Work is about contributing to society. Even if that contribution happens in an alternative format, this is how a person senses his or her dignity. Therefore, the autism community must urgently address this issue of severe unemployment and underemployment.
Vocational Rehabilitation: Sometimes a Good Option
Many disabled adults look for services and supports from the federal-state vocational rehabilitation system. Autistic adults can also avail themselves of what VR has to offer. VR is staffed by different types of professionals, including Certified Rehabilitation Counselors (CRCs) who are trained to provide a mix of counseling, education, skills supports, measurement of work strengths and weaknesses, and advocacy with employers.
Realize, though, that you must qualify for services from VR. Unlike special education, which is a right, you are not entitled to any supports or assistance in adulthood. At a minimum you will need a fresh diagnosis – a diagnosis from middle school or earlier is probably too old for the qualification process. Also keep in mind that each state calls VR something different: For example, In New York, VR is called Vocational and Educational Services for Individuals with Disabilities (VESID); in Maryland, it is the Division Of Rehabilitation Services (DORS); in Oregon, it is the Office of Vocational Rehabilitation Services (OVRS). States vary in what they offer and how you qualify. You can find out the name, phone number, offerings, and qualification procedures of your state’s VR office by looking at the state government website.
It is never too early or too late to contact your state’s VR office. You can call VR at any time in your life. Even if you are a teenager, you may qualify for testing services that can help you determine your work-related interests, talents, and assets. You may be able to participate in VR programs just for transitioning youth. Your state may have pre- vocational options, too, that let you “try out” different work environments or practice work skills before you graduate.
Keep in mind that the professionals in VR have varying degrees of familiarity with autism. If you have strong communication skills, or if you can live independently your need for support in the area of work may not be understood. You may qualify for a service that sounds perfect, such as a computer repair training program, only to discover that supports and accommodations for autism-related issues in the classroom are wholly lacking. You may qualify for VR funds to develop your own business, but if you need a lot of structure and guidance to get tasks done, self-employment may not be for you no matter how great your business plan is on paper. Creative alternatives for employment support and for finding jobs may be more viable for you.
Creative Supports
If you do not qualify for services from VR, or if the services VR has to offer don’t work for you, what else can you do?
Non-profit and private groups focused on autism are filling the gaps by providing ancillary social skills training, mentors, one-on-one behavior coaching, and longer-term employment supports. Before graduating high school, investigate opportunities and limitations of your state’s VR office, and then find out what is offered by autism-specific organizations in your geographic area. Remember to do this research early. You will need a lot of time to collect information, sort through what you discover, perhaps “test drive” certain supports, decide on the various options, and then actually complete application procedures. Non-profit and private groups have some method of determining eligibility for their programs and services, and you may encounter waiting lists.
If you are not finding the right mix of supports from either VR or autism organizations, then you will need to figure out what you can do on your own. It is possible to hire independent Certified Rehabilitation Counselors, social workers, or career counselors with specific training and expertise in autism for career testing, planning, and goal- setting. A number of families have marshaled a knowledgeable sibling or family friend to step in as a job coach. Parents themselves have approached employers to create work trials or to test-run accommodations. Allow yourselves to be as creative as possible. Just realize that finding, hiring, training, and deploying your own “support team” requires time, financial resources, networking, and diligent planning. Don’t wait until the week before high school or college graduation!
Alternative Paths to a Job
Frustrated by a lack of options or excruciating wait lists at VR and agencies serving autistic adults, some families and adults on the spectrum are finding other avenues to employment success.
Some families and adults on the spectrum find internships, volunteer opportunities, specialized positions, or extended “work trials” in businesses operated by compassionate relatives and friends. For example, maybe your parent’s college roommate would be willing to offer you an internship. Would a cousin let you observe and then try the different positions at his firm? Does your neighbor need someone to fix the computers in her warehouse? I bet she would be thrilled if you offered your services for free – she saves money, and you get experience. You or your parents might be lucky enough to network with a willing employer you’ve never met before, but just think for a moment how many workers your parents, relatives, family friends, and neighbors know. Almost all of us know at least 12 people in 12 different professions. And think of how many people these people know! If your networking skills are not great, this is where family and friends need to step in.
For those who require one-on-one support, tailored apprenticeships may be another alternative work possibility. An apprentice can rely on the journeyman to set priorities, organize job tasks, determine the pace of the work, and interface with customers or business-related contacts – instantly removing most social and executive functioning aspects of a job. Since the apprentice and the journeyman expect a relationship that involves at least some degree of guidance, it becomes natural for the journeyman to impart hidden curriculum wisdom. Apprenticeships can often be created for all sorts of jobs, not just union-based jobs typically associated with the apprentice/journeyman structure.
Some families have placed an adult child into self-employment if the individual works best alone or has a special talent or interest that lends itself to proprietorship or consulting. Self-employment ranges from managing a restaurant franchise to tuning pianos to adjunct teaching at a community college.
Many self-employed people, not just those on the autism spectrum, cobble together several “mini” jobs to equal full-time employment. For example, teaching college classes as an adjunct provides just enough external structure, allowing me to follow the rhythm and calendar of semesters. I also obtain all the benefits of university affiliation – such as library privileges so I can conduct research – without the political and social constraints of being a full-time faculty member. But part-time adjunct teaching isn’t a living, so I also see clients, train professionals, and write articles. My days vary, but I have maximum control over what I am doing and when.
Be sure you have the ability to initiate tasks, direct your own activities, and make decisions under pressure if you are going to consider self-employment. Too many people jump into self-employment without carefully assessing their abilities and strengths. On the flip side, too many people don’t give self-employment a chance. You may be able to find support for any areas of weakness. Some of us delegate to others those tasks we can’t do. You may also discover ways to “patch in” supports that extend your ability to make self-employment an option. For example, you can hire someone to do accounting or to handle business phone calls.
Self-employment should be seriously considered if an autistic adult needs strict control of the work environment or the daily schedule. In my case, I must be able to set up my work spaces to my specifications and I must be able to flexibly arrange what I do each day. I only came to understand this about myself after years of trial and error. If you have severe sensory issues, severe executive functioning issues around the tasks of daily living, or your physical energy level and sleep cycles fluctuate, self-employment may be the only viable work option, in which case you will have to fit your skills into a self-employment framework.
If you are not ready to hold down a job or work for yourself, consider the wide range of alternative options. For example, you can always volunteer doing something related to a special interest. I know someone who has retained much echolalic speech as an adult and his favorite pastime is memorizing and then repeating Disney movies. He adopts almost exactly the precise voice of each character and switches between characters effortlessly. The members of the local senior citizen center absolutely love to hear his rendition of their favorite Disney classics and they appreciate his visits! He may not be earning a wage, but he is certainly contributing to society. Find what you love to do, what you are doing already, or what you are good at doing, and build out from there. Every single adult has something to give to the world.
Lastly, consider all of the other factors of life that can impact employment. This will help you determine what types of supports you might need and how you might go about assembling them. For example, if you do not drive and are not able to tolerate public transit, you will need a job in walking distance or a home-based job and if you need a job coach, then you will have to find one that can travel to your neighborhood. If you don’t understand your transportation challenges in advance, you can’t plan for employment effectively. Specific areas to look at carefully include transit, personal care, dressing, eating, sensory issues, environmental factors, level of physical activity, pace of work, degree of socializing required by the job, anxieties around certain tasks, and executive functioning before, during, and after work.
Again, keep in mind that it can take time to organize a team, hire or consult with experts, make plans, and try out different ideas. Autistic adults often need extended periods to adjust to the work environment. And because of the specific social and communication issues associated with autism, autistic adults may need assistants to do the most heavily social aspects of creating an alternative path to work, specifically networking, cold calling, asking questions, or describing needs and strengths. Remember, the vast majority of positions are not filled by responding to help-wanted ads: Most people get a job via their connections to other people.
Adult Life Skills
As a Certified Rehabilitation Counselor (CRC), I am often asked what skills autistic adults need to find and keep jobs. Personally and professionally, I find the biggest problem is not the actual tasks of a job. Across the spectrum we have talents, skills, and knowledge in abundance. The bigger problem is all the social interactions, the politics of the workplace, the essential networking, and the “hidden curriculum” that is so hard to discern. Therefore, worry less about the specific job tasks you might be given and focus a lot more on social skills, self-regulation, self-advocacy, and flexible thinking.
Some people say, what do my emotions have to do with work? The answer: Everything. You need to be able to figure out what you are feeling, how much of a feeling you are experiencing, and what is socially appropriate to do for that particular emotion and that particular amount of emotion. Also, certain feelings should not be expressed or processed at work. The only way to learn how to identify and cope with your emotions is through practice. Don’t begin practicing your first day of your first job.
Many autistic adults need scales and visual aids to deal with emotions, to regulate sensory processing, to gage physical needs, and to modulate communication. For example, if you are at a very high level of anger because your boss told you that you stacked the boxes incorrectly, you need to know that it is OK to take deep breaths, pace back and forth a few times, or walk to the water fountain and get a drink to cool off, but that it is not alright to show anger to the boss, yell, refuse to continue working, or leave the worksite.
I have to watch my level of sensory integration. I have learned through much trial and error the symptoms that indicate I am overwhelmed or becoming overwhelmed, and techniques to bring my body back to a state of equilibrium. Job coaches need to watch for issues and need to be developing strategies and techniques with you so that you can match your behavior to what is expected of adults in your specific work environment. Occupational therapists can also assist not just with sensory processing but also with physical pacing, expression of emotion, and cognitive self-awareness.
Self-advocacy is important because you will encounter moments when you need to articulate your experiences and ask for assistance or accommodations around your challenges. For example, maybe you know in advance that you have difficulty regulating your amount of excitement. You have worked with your support team to create a sliding scale tool for this emotion that helps you match your amount of excitement to one of five levels and that then provides a visual clue of the appropriate behaviors for each level. You try your hardest to use your scales at work to prevent a meltdown. But without self- advocacy skills you will be unprepared for the day you need an exception. You must be able to say to your manager, “My excitement level is extremely high today and despite
using my strategies, I just can’t get myself calmed down. I need to calm down so that I can concentrate on editing this stack of articles. Can I take a 15-minute break now? I’ll stay 15 minutes late at the end of the day to make up the time.”
You do not need extensive verbal fluency to advocate for yourself. I worked with a young gentleman who now carries an index card with a red stripe on one side and a green stripe on the other side. He shows his boss the red stripe if he does not understand what the boss wants him to do, which always causes him agitation and anxiety. When the boss sees the red stripe, she is careful not to overwhelm him further. She usually stops talking, switches to visual instructions, and often gives him a few minutes of breathing room. Conversely, if he is feeling comfortable with a set of instructions and feels ready to proceed with the next activity, he shows his green stripe.
Flexibility is also crucial and very difficult to teach. Again, visual aids such as “if/then” flow charts can help. Also build up your tolerance for disruptions, interruptions, changes to the schedule, or suggestions from co-workers by rehearsing what you will do and what you will say. Writing conversation scripts in advance helps some of us. For example, if your manager frequently asks you to do tasks in novel ways, a script such as, “I see you would like me to repair the motherboard differently. I’ll try, but I need a few minutes to adjust because I thought I would do it the old way,” might give you the time you need to switch gears, accept new instructions, prepare yourself for a new experience, or cope with your emotions about the change in ways that are appropriate for the workplace. Remember, you can utilize communication cards and other visual strategies to get your point across if talking under stress is too difficult, if talking is not your first choice, or if talking is not an option.
Hidden curriculum is perhaps the hardest component of work life to tackle because the context of an interaction is so important: Something said in one moment may be appropriate or inappropriate depending on what else is going on, who else is in the vicinity, or even who is talking. This is why strategies for behavior, facility with emotions, and self-advocacy are such a crucial foundation for social interaction in the workplace. Should you come to a social moment you do not understand, you will still be able to use your foundation skills to remain calm, act appropriately, and request data or input. While you use your foundation skills to get through the day, you can begin to catalog hidden curriculum information for future use.
An example may illustrate what I mean. Let’s say you are friends with a certain co- worker, and the two of you always have coffee together every morning before starting work. Suddenly, on a Tuesday morning, he walks in the door, ignores you, mumbles “Bad hair day,” grabs his coffee, and slinks into his office, shutting the door. You are left standing there baffled and also upset. Why is he talking about hair? Why did he grab his coffee and go away?
Your solid set of foundation skills come into action: You know what is appropriate to do when you are upset, how to show your feelings, and what techniques help you get yourself back to a regular level. But later, you can investigate to recover the missing hidden curriculum data. You find out from the person sitting next to you that the expression bad hair day means the person is having a bad morning. Now you realize your friend is probably just having a rough day and doesn’t want to talk to anyone yet. In this case, it makes sense not to be offended. You decide to ask how he is doing at lunch.
Here is another example. You start a new job, and on the second day, you observe the boss waving to the UPS guy. He yells out to the UPS guy, “Hey you! Hurry up!” and then laughs. The UPS guy chucks a roll of 2-day stickers at the boss, laughs, scans a box, and steps out.
On day three, you are asked to give the boxes to the UPS guy at the end of the day. He is taking a long time scanning each box. Just like the boss, you say, “Hey you! Hurry up!” The UPS guy scowls at you. After the UPS driver leaves, the boss chastises you for speaking to him inappropriately. You are totally confused, deeply embarrassed, and also worried that you might lose your job. You use your foundation skills to identify these feelings and cope with them privately. You use a script you developed in advance that provides a framework for responding to criticism appropriately. You go back to your job. Later that evening, you call your job coach and ask for the hidden curriculum. Your job coach explains, “Oh! The UPS guy – that is the boss’s cousin! They yell at each other all the time but it is just a joke. You, on the other hand, should not yell at the UPS driver. It does take quite a long time to scan all those boxes and get them on the truck.” You and your coach decide together that the coach will let the boss know you were simply confused but understand now.
These “adult life skills” are absolutely crucial to work success, whether you are folding boxes, illustrating toothpaste tubes for a multinational corporation, answering the phones at a small neighborhood bike repair shop, repairing iPhones, volunteering at a paperclip museum, delivering pizzas on the weekend, reciting Disney movies for seniors, or running an X-ray machine. Don’t discount the importance of these skills. You will use them every single day, no matter what you are doing with your life and no matter how your autism impacts you.
Work Culture
Another key aspect of working that is not considered enough is work culture. If you are an adult on the autism spectrum, or if you are a professional or family member helping an autistic adult, carefully analyze the culture of a workplace and how well the culture matches your needs and values.
I interface with employers on behalf of clients regularly. Part of what I am doing is advocating on behalf of clients who might work there: I am explaining autism and what autistic adults can contribute, I am describing the types of accommodations that might enable an autistic adult to succeed at a particular job, and I am pointing out ways that hiring someone with a specific set of talents or interests will be valuable to the company. But I am also assessing the worksite culture and how the different adults I am assisting may or may not fit in to that culture.
If you just can’t managing the executive functioning of getting into a suit and tie every day, if you loathe the idea of punching in with a time card at an exact time, or if you do not like conforming to a standard pitch line about the company and its activities, I am not going to recommend a position for you at a worksite with a strong corporate culture, strict time requirements, a dress code, and policies on what employees can say about store products. On the other hand, if you need to know exactly when your shift starts and stops, and if you need to know exactly what to do each moment of the day, a corporate environment might be better than a local shop with an informal schedule and rotating tasks.
Some people are going to say, “Isn’t this obvious? If you are scared of heights, don’t become an astronaut.” To a degree the concept of workplace culture in employment planning is a given. But when it comes to autism, this issue magnifies in importance. You must know yourself thoroughly, and whoever is assisting you must take workplace culture into serious consideration.
Conclusion
Because our culture is not a meritocracy, and because the world of work in our society places such an extraordinary emphasis on social connection, autistic adults frequently need extra assistance in this area. Teaching someone how to navigate the social environment at work adroitly is complicated but not impossible.
Keep in mind that learning happens over time. It is totally normal, for example, for adults to try a variety of jobs and fail at several, yet when an autistic person is fired everyone acts as if the world is falling apart. I was complaining to a fellow autistic friend of mine a number of years ago when yet again, a job I was trying was just not working. I was deeply frustrated and disappointed. She said, “What’s wrong with failing? You can always get up and fail something new!” Autistic adults have just as much right to change their minds, fail, try again, adjust, adapt, and grow as any other adult. What you are doing at 20 is rarely what you are doing at 40 or 60.
Often autistic adults do not fit the typical profile of someone who needs employment supports. Autistic adults have a unique learning profile and unique challenges in communicating and socializing that can be difficult to pinpoint or to address with typical accommodations and services. When it comes to autism, it is vital to put all notions aside. I know autistic adults with verbal fluency and master’s degrees who need visual aids and a job coach to maintain employment. I also know autistic adults who use electronic communication devices and need supports around basic activities of daily living and they are extraordinarily successful at college and have much to contribute to their chosen fields of endeavor. Always presume ability while simultaneously investigating openly what someone’s support needs might be.
In conclusion, I restate my unequivocal belief that all adults on the autism spectrum have something to contribute to their communities and to the world. It is up to the rest of us to help each one reach his or her potential. When society broadens our value of all types of positive contribution, the chances to create a high quality of life full of dignity and activity go up.
Presenter: Wendy Fournier is a founding board member and President of the National Autism Association. The organization has been instrumental in bringing federal attention to the issue of autism-related wandering. In 2010, Wendy and NAA Executive Director Lori McIlwain were invited to present on the wandering/elopement issue before the Interagency Autism Coordinating Committee at NIH, where they outlined the need for data collection, medical diagnostic coding, and federal health agency involvement. As a result, the committee has since implemented several of NAA’s recommendations. In addition to bringing awareness to the issue, NAA has developed extensive resources for the community including the AWAARE collaboration website and the Big Red Safety Box program.
