People Creating Options: The Julie + Michael Tracy Family Foundation and Urban Autism Solutions

Be the change that you wish to see in the world – Mahatma Gandhi

Here at Autism College  we enjoy highlighting   people that  are working towards creating opportunities for those with autism. Here is a guest blog written by Michael Tracy, co-founder of the Julie + Michael Tracy Family Foundation (JMTF) and Urban Autism Solutions.  JMTF and Urban Solutions  exists to help address challenges  in regards to employment and housing that our young adults with autism face.

Julie and Michael Tracy

Julie and Michael Tracy

Julie and I are the parents of two sons, Joseph, 23, and John, 21. While Joe developed typically, John was diagnosed with Pervasive Developmental Disorder (Autism) in preschool. We tried hard to mainstream him, but John struggled socially. No amount of soccer or Boy Scouts or 4H seemed to help. It tore out hearts out to see him so isolated. In middle school, John developed schizoaffective disorder. By the time he reached his sophomore year in high school he had been hospitalized at least three times and we could see that a big change was needed.

In his sophomore year in high school, John was enrolled in the Sonia Shankman Orthogenic School, a residential, therapeutic school associated with the University of Chicago. In the spring of 2011 he had his most serious psychotic break and was hospitalized for five weeks at Rush Hospital on the Near West Side of Chicago. It was a pretty intense experience for John and our family. While Julie and I were very impressed with the care John was given at Rush, we learned of the need for more specific psychiatric and transitional care directed towards young adults with autism and comorbid mental health problems.

After John was released and back at the “O” School, we founded the Julie + Michael Tracy Family Foundation and Urban Autism Solutions to help address challenges facing young adults with autism. Learning that the vast majority of this population lives at home with their parents and often don’t hold jobs and/or have meaningful lives outside the home, we set out to work with Rush University Medical Center to establish the Autism Assessment Research and Treatment Service Center (AARTS) with the goal of working with young adults on the Spectrum to achieve better outcomes.

Urban Autism Solutions is currently the only organization dedicated to providing wrap around solutions and a path to a fully integrated community life. We plan to create a series of residences for young adults with autism on the near West Side of Chicago. We just purchased our first residence that will house three young adults with autism. The building is in close proximity to Rush, allowing easy access to the Rush AARTS Center. With public transportation, the city is a much more livable place for those like John who will probably never drive. The neighborhood is conducive to walking, as is close not only to Rush but also to the University of Illinois at Chicago, the restaurant district surrounding Taylor Street in Little Italy and the West Loop neighborhood to the north. In the midst of so many businesses and in the shadow of the downtown, we know there may be more opportunities for meaningful employment for John. Finally, an urban setting, due to its diverse populations, might allow for “quirky” young men to “fit in” better.

Another initiative of our foundation is to develop social enterprise businesses to provide vocational opportunities for young adults with autism, as well as returning vets and others who need workforce development. This past summer, we launched a pilot community vocational garden, housed in the Illinois Medical District, just west of Rush. Our goal was to learn about urban gardening, health and nutrition and to create a viable path to greater economic independence for this vulnerable population. In addition to harvesting an abundance of produce, all indications of our initial research and assessment of the first year success of this pilot program are very positive. We are busy planning a major expansion for Year Two and we are exploring selling our produce to an  institutional partner and at a local farmer’s market.

The long-term goal of the JMTF and Urban Autism Solutions is to provide a safe and supported passage to a fully integrated community life. Through our initiatives of residential housing, groundbreaking research, vocational opportunities and an alliance with the Rush AARTS Center, we know we are creating viable opportunities and solutions for young adults and families with autism. To find out more about our foundation, go to www.jmtf.org.

 

 

Employment on the Autism Spectrum

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.

Autism Life Skills: 10 Essential Abilities for Children with ASD

By Chantal Sicile-Kira      Editorial Note: This article originally appeared in Advocate Magazine in 2008

 

Teacher: “What are your greatest dreams about your future?”

Jeremy: “I want to have my own house with roommates, good friends,

a fun job and be learning.”

 

Teacher: “What are your greatest fears about your future?”

Jeremy: “That I will not have enough money.”

 

Teacher: “What barriers might get in the way of accomplishing your goals?”

Jeremy: “You know I need good helpers. I need people that respect my intelligence.”

-Interview with Jeremy Sicile-Kira

Transition Year 2007-08

With two teenagers who will soon be out of school, there has been much reflection and soul searching taking place in my home lately as to whether or not we’ve made the right decisions as parents over the years. Rebecca, our  neurotypical teenager, has just started driving and is becoming more independent. In hindsight, there is not much I would do differently if we had to start raising her all over again.

My thoughts concerning Jeremy, our 19-year-old son with autism, are somewhat  different. Those who have seen him on the MTV True Life segment “I Have Autism” will remember his can-do spirit and his determination to connect with other people, but also how challenged he is by his autism. Obviously, there are many more options available to help people like Jeremy today than when he was a baby. Over the last few years, as we considered how to best prepare Jeremy for the adult life he envisioned, I wondered what we could have or should have done differently when he was younger.

This led me to think: What would today’s adults on the autism spectrum point to as the most  important factors in their lives while they were growing up? What has made the most impact on their lives as adults in terms of how they were treated and what they were taught as children? What advice did they have to offer on how we could help the children of today? I decided to find out. I interviewed a wide-range of people—some considered by neurotypical standards as “less able,” “more able” and in-between; some who had been diagnosed as children; and some diagnosed as adults.

The result of these conversations and e-mails became the basis of my latest book, Autism Life Skills: From Communication and Safety to Self-Esteem and More—10 Essential Abilities Your Child Needs and Deserves to Learn (Penguin, October 2008). Although some areas discussed seemed obvious on the surface, many conversations gave me the “why” as to the challenges they faced, which led to discussions about what was and was not helpful to them. No matter the differences in their perceived ability levels, the following 10 skill areas were important to all.

Sensory Processing

Making sense of the world is what most adults conveyed to me as the most frustrating area they struggled with as children, and that impacted every aspect of their lives: relationships, communication, self-awareness, safety and so on. Babies and toddlers learn about the world around them through their senses. If these are not working properly and are not in synch, they acquire a distorted view of the world around them and also of themselves.

Most parents and educators are familiar with how auditory and visual processing challenges can impede learning in the classroom. Yet, for many, sensory processing difficulties are a lot more complicated and far reaching. For example, Brian King, a licensed clinical social worker who has Asperger’s, explains that body and spatial awareness are difficult for him because the part of his brain that determines where his body is in space (propioception) does not communicate with his vision. This means that when he walks he has to look at the ground because otherwise he would lose his sense of balance.

Donna Williams, Ph.D., bestselling author and self-described “Artie Autie,” had extreme sensory processing challenges as a child and still has some, but to a lesser degree. Donna talks about feeling a sensation in her stomach area, but not knowing if it means her stomach hurts because she is hungry or if her bladder is full. Other adults mention that they share the same problem, especially when experiencing sensory overload in crowded, noisy areas. Setting their cell phones to ring every two hours to  prompt them to use the restroom helps them to avoid embarrassing situations.

Many adults found it difficult to tolerate social situations. Some adults discussed how meeting a new person could be overwhelming—a different voice, a different smell and a different visual stimulus—meaning that difficulties with social relationships were not due simply to communication, but encompassed the total sensory processing experience. This could explain why a student can learn effectively or communicate with a familiar teacher or paraprofessional, but not a new one.

The most helpful strategy was knowing in advance where they were going, who they were going to see and what was going to happen, so that they could anticipate and prepare themselves for the sensory aspects of their day. Other strategies included changing their diet, wearing special lenses, having a sensory diet (activities done on a regular basis to keep from experiencing sensory overload), undergoing auditory and vision therapy, as well as desensitization techniques.

Communication

The ability to communicate was the second most important area of need cited by adults. All people need a form of communication to express their needs, in order to have them met. If a child does not have an appropriate communication system, he or she will learn to communicate through behavior (screaming or throwing a tantrum in order to express pain or frustration), which may not be appropriate, but can be effective. Sue Rubin, writer and star of the documentary “Autism is a World,” is a non-verbal autistic college student and disability advocate. She often speaks about the impact of communication on behavior. She shares that as she learned to type she was able to explain to others what was causing her behaviors and to get help in those areas. In high school, typing allowed her to write her own social stories and develop her own behavior plans. As her communication skills increased, her inappropriate behaviors decreased.

Those with Asperger’s and others on the more functionally able end of the spectrum may have more subtle communication challenges, but these are just as important for surviving in a neurotypical world. Many tend to have trouble reading body language and understanding implied meanings and metaphors, which can lead to frustration and misunderstanding. Michael Crouch, the college postmaster at the Crown College of the Bible in Tennessee, credits girls with helping him develop good communication skills. Some of his areas of difficulty were speaking too fast or too low, stuttering and poor eye contact. When he was a teenager, five girls at his church encouraged him to join the choir and this experience helped him overcome some of his difficulties. Having a group of non-autistic peers who shared his interests and provided opportunities for modeling and practicing good communication skills helped Michael become the accomplished speaker he is today.

Safety

Many on the spectrum had strong feelings about the issue of safety. Many remember not having a notion of safety when little, and putting themselves in unsafe situations due to sensory processing challenges. These challenges prevented them from feeling when something was too hot or too cold, if an object was very sharp or from “seeing” that it was too far to jump from the top of a jungle gym to the ground below.

Many adults described feeling terrified during their student years, and shared the fervent hope that with all the resources and knowledge we now have today’s students would not suffer as they had.  Practically all recounted instances of being bullied. Some said they had been sexually or physically abused, though some did not even realize it at the time. Others described how their teacher’s behaviors contributed directly or indirectly to being bullied. For example, Michael John Carley, Executive Director of GRASP and author of Asperger’s From the Inside Out, recalls how his teachers made jokes directed at him during class, which encouraged peer disrespect and led to verbal bullying outside the classroom.

A school environment that strictly enforced a no-tolerance bullying policy would have been extremely helpful, according to these adults. Sensitizing other students as to what autism is, teaching the child on the spectrum about abusive behavior, and  providing him/her with a safe place and safe person to go to at school would have helped as well. Teaching them the “hidden curriculum,” so they could have understood what everyone else picked up by osmosis would have given them a greater understanding of the social world and made them less easy prey.

Self-Esteem

Confidence in one’s abilities is a necessary precursor to a happy adult life. It is clear that those who appear self-confident and have good self-esteem tend to have had a few things in common while growing up. The most important factor was parents or caretakers who were accepting of their child, yet expected them to reach their potential and sought out ways to help them. Kamran Nazeer, author of Send in the Idiots: Stories from the Other Side of Autism, explains that having a relationship with an adult who was more neutral and not as emotionally involved as a parent is important as well. Parents naturally display a sense of expectations, while a teacher, mentor or a therapist can be supportive of a child and accepting of his/her behavioral and social challenges. Relationships with non-autistic peers, as well as autistic peers who share the same challenges were also important to developing confidence.

Pursuing Interests

This is an area that many people on the spectrum are passionate about. For many, activities are purpose driven or interest driven, and the notion of doing something just because it feels good, passes the time of day or makes you happy is not an obvious one. Zosia Zaks, author of Life and Love: Positive Strategies for Autistic Adults, told me that, as a child, she had no idea that she was supposed to be “having fun”—that there were activities that people participated in just for fun. It was one of those things about neurotypical living that no one ever explained to her.

As students, some of these adults were discouraged from following their obsessive  (positive translation: passionate) interest. Others were encouraged by parents and teachers who understood the value of using their interest to help them learn or develop a job skill. For example, when he was little, author and advocate Stephen Shore used to take apart and put together his timepieces. Years later, this interest was translated into paid work repairing bicycles at a bike store.

Self-Regulation

Respondents believed this is a necessary skill for taking part in community life. Many children on the spectrum suffer from sensory overload. It can also be difficult for them to understand what they are feeling and how to control their emotional response. Dena Gassner, MSW, who was diagnosed as an adult, believes it is necessary for children to be able to identify their “triggers” and that parents and educators should affirm to the child that whatever he or she is feeling is important. Even if it does not make sense to the adult, whatever the child is feeling is true for him or her. Various methods can be used to help them become more self-aware over time, to recognize when they are approaching sensory or emotional overload and to communicate the need for a break. As they get older, giving them more responsibility for scheduling their own breaks and choosing their own appropriate coping strategy can be very empowering.

Independence

Independence is an important goal, but may take longer than expected. Zosia Zaks told me that parents of children with autism need to realize and accept that they will be parenting for a lot longer than parents of neurotypical children. She has a point, but I never thought I’d still be discussing certain self-care issues when my son was old enough to vote. For many that I interviewed, some skill acquisition came later in life, and many are still improving themselves and their essential skills. This is nice to know because so often, as parents and educators, we hear about the “windows of opportunity” in terms of age and can become discouraged by our own inner cynics and other well-meaning doubters (“If they haven’t learned by now….”).

When discussing self-sufficiency, many stated that the two greatest challenges were executive functioning  (being able to get and stay organized) and sensory processing. Doing chores and establishing routines helped some as children to learn organizational skills and responsibility—two essential foundations for self-sufficiency.

Social Relationships

Relationships are important to all human beings, but are difficult for many on the spectrum. The adults I communicated with make it clear they enjoy having relationships, including those who are mostly non-verbal, such as Sue Rubin and D.J. Savarese (who wrote the last chapter of Reasonable People). However, understanding the concept of different types of relationships and knowing the appropriate behaviors and conversations expected does not come naturally, and can be magnified for those who are non-verbal.

Many adults, such as Dena Gassner and Zosia Zaks, discussed the importance of teaching children interdependence skills—how to ask for help, how to approach a store clerk, how to network as they get older. For them, interdependence did not come as easily as it does for neurotypicals. Yet, asking people for assistance—what aisle the cookies are located in, the name of a plumber when your sink is stopped up, letting people know you are looking for a job or apartment—is how social and community life functions.

Self-Advocacy

Effective self-advocacy entails a certain amount of disclosure. All of the adults I spoke with believed that children should be told about their diagnosis in a positive manner. Michael John Carley, who was diagnosed following the diagnosis of his son, says he always felt different than others. Getting a diagnosis was liberating because then he knew why he felt different. On the topic of disclosure to others, some believe in full disclosure to all, while others choose to disclose only the area of difficulty.

Like many her age, Kassiane Alexandra Sibley, who wrote a chapter of the book Ask and Tell,  was improperly diagnosed before discovering at age 18 that she had an autism spectrum disorder. She had to learn self-advocacy skills the hard way. Like many I spoke with, Kassiane believes that teaching children when they are young to speak up for themselves is the most important gift we can give them.

Earning a Living

This is an issue of major concern for many on the spectrum. Some of the adults I spoke with struggled for years before finding an area in which they could work. The life skills discussed earlier in this article impact tremendously on a person’s ability to find, get and keep a job. Many people on the spectrum continue to be unemployed or underemployed, which means we need to rethink our approach in how we are transitioning our youth from being students to being contributing members of society.

Temple Grandin, who co-authored the book Developing Talents, says that parents should help their children develop their natural talents and that young people need mentors to give them guidance and valuable experience. Authors John Elder Robinson (Look Me in the Eye) and Daniel Tammet (Born on a Blue Day) both credit their Asperger’s for giving them the talents on which they have based their successful businesses. For those whose talents are less obvious, a look at the community they live in and the service needs that exist there can be an option for creating an opportunity to earn money.  My son Jeremy and his teacher created a sandwich-delivery business and a flower business on his high school campus as part of his work experience. Customized employment, including self-employment, is an option that, with careful planning and implementation, can be a solution for some.

In retrospect, there are different choices I could have made  in raising and educating Jeremy these past 19 years. However, after conversations and e-mails with many  different adults on the spectrum, I have concluded that there is one factor I would not have changed, the formula I used for providing a solid foundation for both of my children: Take equal parts love, acceptance and expectation, and mix well.

 

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….

Transition to Employment and Independent Living for Individuals with Autism and Aspergers

by Temple Grandin

Successful transition from the structured world of school or college to successful employment requires a lot of hard work. One of the biggest problems I had with trying something new was fear. Long before a student on the ASD spectrum graduates from either high school or college, they need to get work experience while they are still in school. The transition from school to employment should be gradual and not abrupt. I saw one student who graduated successfully from college and he had zero job skills. This is wrong. Teaching job skills should start before the student graduates. Mother was always pushing me to try new things. If she had not pushed me, I would not have developed. Below I will outline the work experiences I had when I was still in school.

13 years old – During the summer I worked two afternoons a week for a seamstress who did freelance sewing. My job was to hand hem dresses and take garments apart. Mother found this job for me and I was really good at the job. I also loved the money I earned.

15 years old – Mother lined up a summer job for me at my aunt’s ranch. I was afraid to go but mother gave me two choices. They were come home in two weeks or stay all summer. I ended up staying all summer. Planning for the trip, which included flying from New York to Arizona, started three months before I left. It was essential that I was allowed to plan ahead. Surprises cause panic.

14-18 years old – Horse Barn – In my high school, I worked cleaning stalls and feeding eight horses. This was a job I found for myself. Even though I was a goof ball student who did not study, I worked hard taking care of the horses. I was learning valuable work skills.

16 to 18 years old – Carpentry Work – At my boarding school I did lots of carpentry projects such as fixing up our ugly ski tow house. I put tongue-and-groove siding on it with white trim. One important work skill I learned from my many projects was to do an assigned task. Decorating the ski tow house with cattle pictures would not be appropriate. I had to decorate in a manner that other people would appreciate.

18 years old – I was still a bad student who did not study. I did not see any point in studying until my science teacher gave me a reason for studying. He got me interested in science and I became interested in becoming a scientist. My teacher told me that if I wanted to become a scientist I would have to study. Almost overnight I decided to study and I got good grades in college.

College Years – During my college years while getting my B.A., I continued to visit the ranch and I had two other summer internships. One summer I worked in a research lab with mice and the next summer I worked with autistic children. Mother helped line up both of these jobs.

Master’s Degree – After four years of college, I spent five years getting my Masters and I was gradually spending more and more time working. I slowly transitioned from the world of school to the world of full-time work. During this period I had a part-time job as livestock editor for the Arizona Farmer Ranchman and I also worked part-time for a company that built cattle feedlots. After this five year period I was no longer a student. I had my M.S. degree and I was now building up my freelance consulting business, one project at a time. One of the things that made my transition successful was that I slowly transitioned from full-time school to slowly weaning myself away from the structured world of school.

Ph.D. Program – After five years of full-time consulting, I went back to school to get my Ph.D. when there was an economic recession in the 1980’s. I spent nine years getting my Ph.D. on a part-time basis and I still worked. I still designed equipment and did seminars on livestock handling, while I was working on my Ph.D.

Sell Your Work – One of the things I figured out is that I had to sell my work and not my personality. I avoided job interviews and I showed prospective clients a portfolio of my drawings and photos of completed livestock handling facilities. Many people thought I was weird but they respected me when they saw my design drawings. Many people made the mistake of putting too much stuff in their portfolio. It is best to put relatively few examples of the very best work. In my book, Developing Talents, I provide a lot more tips for making portfolios.

It Takes Time to Develop a Skill – I am a visual thinker and I used my visual thinking ability in my work designing cattle facilities. Half the cattle in North America are handled in my designs. While I was working on my Master’s, I spent three years learning all about cattle handling and different facility designs. I went to every feedlot in Arizona and I worked cattle. It was an obsession but it was an obsession I turned into a career. I had to work hard to develop my designs.

Types of Minds – I have observed that there are three basic types of specialized minds on the autism spectrum.

Visual Thinker

This is my type. I think in photo realistic pictures like Google for images. Algebra was impossible for me. Unfortunately I was never allowed to try geometry or trig. This was a big mistake. Some individuals who cannot do algebra can do geometry. Visual thinkers are good at the following occupations:

  • Artist and Graphic Design
  • Industrial Design
  • Architecture
  • Auto Mechanics
  • Drafting
  • Photography
  • Animal Trainer

Pattern Thinkers

These are the individuals who are often good at math and music. Reading may be their area of weakness. Pattern thinking is a more abstract form of visual thinking. They think in patterns instead of pictures. Some good occupations for pattern thinkers are:

  • Scientific Researcher
  • Statistics – data mining
  • Engineering
  • Music
  • Mathematics
  • Computer Programming
  • Chemistry

Word Fact Thinkers

  • Journalist – Blogger
  • Librarian
  • Record Keeping Jobs
  • Special Education Teacher
  • Bookkeeping
  • Speech Therapist

These are the individuals who know all the facts about their favorite things such as movie stars or baseball players. History is often a favorite subject. They are NOT visual thinkers and they are often poor in art. The following careers would be good choices:

Never Too Late to Start – I have had parents, teachers, and individuals on the spectrum ask me, “How can an individual who is 30 and has never worked get started?” It is never too late to start. They need to start one small job at a time. The first task is learning time management and showing up for work on time. The individual will have to make some changes. When I was hired by the construction company, my new boss scolded me on hygiene. I was very upset but I complied because I wanted to keep the job. As a person on the spectrum, I have never stopped learning. Every day I keep learning.