SELF-ADVOCACY, RIGHTS, ACCOMMODATIONS & DISCLOSURE
Self-advocacy
Where you work and what job you perform are important choices. When you finally accept a job offer, you will need to start practicing some level of self-advocacy.
Self-advocacy is:
- speaking up for yourself
- asking for what you need
- negotiating for yourself (working with others to reach an agreement that will meet your needs)
- knowing your rights and responsibilities
- using the resources that are available to you
- being able to explain your disability either by the use of written words, pictures or gestures
- learning to ask for help
- identifying any obstacle or difficulty and then seeking out assistance to find resolve
Once you have an understanding of your unique needs and challenges in the workplace, you can make a self-advocacy plan. Consider which accommodations you can implement on your own and which might require permission from your employer. Make sure you consider all of your needs — social and communication, sensory, executive function and movement. Make a plan if you will disclose, what method of communication you will use and what you will say.
Autism Speaks Workplace Inclusion Now™ (WIN)
Workplace Inclusion NowTM (WIN) is Autism Speaks workforce development program for employers, job seekers and community stakeholders committed to promoting diversity in hiring and creating an inclusive workplace culture in which not just autistic adults, but all employees can thrive.
A key component of WIN is online training courses, including several designed in collaboration with Virginia Commonwealth University Autism Center for Education, a national leader in developing knowledge and research-based practices to support individuals with autism spectrum disorder. Each course is designed to raise awareness around differences in thinking and communication styles and to provide strategies to build inclusive workplaces.
WIN is a tool to improve your career readiness. It will empower you to bring your best self to your employer, or potential employer. Through WIN courses, you will learn about self-advocacy, accommodations, disclosure and how to navigate your differences at work. All courses can be taken with a caregiver or trusted person, if needed.
Sign up for our Navigating your differences in the workplace course.
Employment rights
There are a number of important federal laws that protect individuals with disabilities from discrimination in employment and the job application process. These laws and the recourse you have if your rights are violated are outlined below.
Americans with Disabilities Act
The Americans with Disabilities Act of 1990 prohibits discrimination based on disability. Under this act, disability is defined as “a physical or mental impairment that substantially limits a major life activity”. The ADA requires employers with 15 or more employees to provide a reasonable accommodation for the individual with the disability. A “reasonable accommodation” is defined as any change or adjustment to a job or work environment that permits a qualified applicant or employee with a disability to participate in the job application process, to perform the essential functions of a job, or to enjoy benefits and privileges of employment equal to those enjoyed by employees without disabilities.
Rehabilitation Act of 1973
The Rehabilitation Act is an act of Congress signed into law by President Richard M. Nixon on September 26, 1973. It prohibits discrimination on the basis of disability in programs conducted by federal agencies, in programs receiving federal financial assistance, in federal employment, and in the employment practices of federal contractors. Section 504 of the Act (see below) created and extended civil rights protections to people with disabilities. As a direct result of the Rehabilitation Act, many people with disabilities were provided opportunities in education and employment. The Rehabilitation Act of 1973 was amended in 1978 (to establish independent living centers), 1986 (to enhance support for rehabilitation engineering), 1992 (to ensure consumer choice in career opportunities), and 1998 (to provide federal funds to assist people with disabilities in finding meaningful employment).
Section 503
Section 503 of the Rehabilitation Act of 1973 prohibits discrimination and requires employers with federal contracts or subcontracts that exceed $10,000 to take affirmative action to hire, retain, and promote qualified individuals with disabilities. This law is enforced by the Employment Standards Administration’s Office of Federal Contract Compliance Programs (OFCCP) within the U.S. Department of Labor.
Section 504
Section 504 states that no qualified individual with a disability in the United States shall be excluded from, denied the benefits of, or be subjected to discrimination under any program or activity that either receives federal financial assistance or is conducted by any executive agency or the United States Postal Service. Basically, this means all government-funded programs/entities must adhere to this law, meaning they cannot discriminate against an employee with a disability, or a potential employee with a disability.
Enforcing the laws
The Equal Employment Opportunity Commission (EEOC) enforces laws against workplace discrimination on the basis of an individual’s race, color, national origin, religion, sex, disability, and age. The law also protects people from discrimination based on their relationship with a person with a disability (even if they do not themselves have a disability). For example, it is illegal to discriminate against an employee because her husband has a disability. It is illegal to harass an applicant or employee because he or she has a disability, had a disability in the past, or is believed to have a physical or mental impairment that is not transitory (lasting or expected to last six months or less) and minor (even if he or she does not have such an impairment). Harassment can include, for example, offensive remarks about a person's disability. Although the law does not prohibit simple teasing, off-hand comments, or isolated incidents that aren't very serious, harassment is illegal when it is so frequent or severe that it creates a hostile or offensive work environment or when it results in an adverse employment decision (such as the victim being fired or demoted).
Resources if you feel your rights have been violated:
■ Filing a charge of discrimination with the EEOC
Accommodations
Under Title I of the Americans with Disabilities Act (ADA), a reasonable accommodation is a modification or adjustment to a job, the work environment, or the way things are usually done during the hiring process.
These modifications enable an individual with a disability to have an equal opportunity not only to get a job, but successfully perform their job tasks to the same extent as people without disabilities.
The ADA requires reasonable accommodations as they relate to three aspects of employment:
1. ensuring equal opportunity in the application process;
2. enabling a qualified individual with a disability to perform the essential functions of a job; and
3. making it possible for an employee with a disability to enjoy equal benefits and privileges of employment.
Many autistic employees require some type of accommodation in their employment. Some of those are easy and inexpensive to implement, while others require a more thoughtful plan. This section offers information on different types of accommodations. It is important to note that job responsibilities can change according to the needs of the business. Accommodations should be considered not only to get a job, but to keep a job.
Reasonable accommodations
Job Accommodation Network (JAN)
In order to understand all your options for a job accommodation, it is important to speak to someone with experience in understanding and applying accommodations. JAN provides free, confidential technical assistance about job accommodations and the Americans with Disabilities Act (ADA). Their website also outlines some accommodation suggestions for individuals with ASD. Click here to learn more.
Technology
Smartphones, iPads and other technology offer task management and organizational features that may be utilized to help you function more successfully in the workplace. Additionally, onboard video cameras and add-on software applications provide rich opportunities for you.
For more information on how technology can help you in the workplace, check out these articles and resources:
Universal Design for accommodations
Universal Design is defined as “design and composition of an environment so that it can be accessed, understood and used to the greatest extent possible by all people regardless of their age, size, ability or disability." Examples include: adaptive lighting, visual reminders in hallways and in communications, automatic doors.
Increasingly, employers recognize that universal design is a fundamental condition of good design. If an environment is accessible, usable, and convenient to use, everyone benefits.
Natural Supports
Natural supports are strategies that workers and managers use on a regular basis with all of their colleagues in the workplace, regardless of whether or not they have a disability. This allows you to be treated exactly like everyone else. Natural supports in the workplace are easier to maintain and more cost-effective than more formal interventions such as job coaches, too. Some business leaders who participated in the Autism Speaks Employment Think Tank expressed interest in the idea of using the “manager as job coach,” which would make it a natural responsibility for a manager to support employees with ASD. This also helps phase out the job coach, who is best used as a temporary accommodation during times of transition.
Workplace social skills
- Use a job coach to help you understand different social signs and cues.
- Review or ask your job coach to review with you conduct policies to understand what is unacceptable behavior.
- Use role-play scenarios with your job coach or trusted friend to demonstrate acceptable behavior in workplace.
Interacting with coworkers
- Look for a mentor to help you learn how to interact with co-workers.
- Minimize personal conversation, or move personal conversation away from work areas.
- Ask for a job accommodation that is an alternative form of communication if needed between you and your co-workers, such as email, instant messaging, or text messaging rather than conversational.
Communicating effectively with supervisors
- Ask for day-to-day guidance and feedback.
- Ask for clear expectations and the consequences of not meeting expectations.
- Ask to establish long term and short-term goals.
- Ask for assigning of priority of tasks.
- Ask for assignment of projects in a systematic and predictable manner.
Communicating in the workplace
- Ask for advanced notice of meetings, particularly when you may be required to provide information at the meeting.
- Ask if you can provide a written response in lieu of verbal response.
- Ask for advanced notice of meeting topics, particularly when you are required to participate verbally.
- If you need support, ask to bring an advocate to any performance review or disciplinary meetings.
Finding job fulfillment after diagnosis
Lessons from Autism Speaks employee John Taylor
John Taylor has worked at Autism Speaks since 2011. He is responsible for editing our Resource Guide, contributing to our Tool Kits and Roadmaps, and helping constituents access that information. His path to full-time employment started out bumpy, taking a turn for the better after he received his autism diagnosis at the age of 24. With a better sense of self, he found support from a disability employment agency which ultimately led him to his current role. Here, he reflects on how he overcame obstacles, shares challenges he still has, and offers advice to other autistic adults looking for fulfillment in the workplace.
Job searching: Know yourself and ask for help
A few things caused me difficulties when looking for a full-time job. For one, I was looking for an entry-level job. The catch-22 that many jobseekers face, whether they’re autistic or not, is that so many so-called “entry-level” job ads state a minimal number of years of experience is required. But,you can’t get that experience. All the other job ads have the same requirements. Job openings for those without experience exist, but it takes a lot more effort to find them. Or, you have to have connections to find them. As they say, “It’s not what you know, it’s who you know.”
After my autism diagnosis, I got help from a New-York-City-based organization, Job Path, that helps people with developmental disabilities find jobs. I had a very competent job coach there who helped me pinpoint my skills, prepare my resume, and practice for my interviews.
Interviewing: Challenges and nerves are normal
Once I found entry-level jobs, my difficulties didn’t stop there. I often have trouble making eye contact, especially when I’m physically close to someone, like across their desk during an interview. I also often find it so much easier to concentrate during a conversation without eye contact. By that, I mean focusing on both what I’m saying and what the other person(s) is/are saying. After all, we speak with our mouths, listen with our ears, see with our eyes, and think with our brains. While eyes can convey emotions, they don’t do the actual physical speaking and listening. However, in our society, many think that you must make eye contact when communicating with people. People who don’t make eye contact are also seen as not being honest. Silly neurotypicals, am I right? I’m sure they talk on the phone without eye contact just fine! I’m also certain that eye contact has no bearing on honesty.
Another thing is my body language. I’ve always been very fidgety, especially when feeling nervous. But who doesn’t feel nervous during a job interview? Besides, it is more unnatural to sit completely still for a long conversation than it is to fidget.
I’ve heard other autistic people say that they would prefer to have an alternative to the traditional interview process, like maybe being able to demonstrate their abilities with some sort of test. While I think these options should be open, not only to those with autism, but to everyone, I’m not totally against traditional interviews. I just think interviewers need to be more understanding of people’s differences.
Self-advocating: Tips on how to find a job and thrive in the workplace
Ask for help. Use an employment agency and/or a job coach that specializes in helping those with disabilities.
Practice answering common job interview questions like, “What are your strengths and weaknesses?” to help you calm down before an interview. This can be with your job coach, a friend, or a family member. Remember though, being nervous is normal.
Ask for accommodations as soon as you know you need them. I personally find it a lot easier to focus on my work, and not be distracted by things like conversations, by using noise-cancelling headphones to listen to things like music, podcasts, or audiobooks. A pair of noise-cancelling headphones is well-worth the investment if you have sound sensitivities. You can either listen to stuff with them on, or you can just use the noise-cancelling feature by itself. Keep in mind that not all accommodations are appropriate for all work environments. I only occasionally have to speak with coworkers, so listening to stuff on my headphones works for me.
Many of us thrive on routines. Conversely, we also have trouble with changes in routine. A new job itself is a change in routine. Whatever you used to do during your work hours will probably have to change. Figuring out the best routine could take a bit of trial and error. As you progress in a job, you will probably be given more responsibilities. When this happens, you will have to change your routine. This, once again, is difficult. I think it’s a good idea to tell your supervisor how beneficial routines are for you and to ask for time adjusting to any changes to them.
Schedule periodic check-ins with your supervisor to stay on the same page. I meet once a week with my supervisor because that works for us. Maybe you would want to meet every day or every month, whatever works for your arrangement. Even if it is not the most fun part of your job, it helps you stay on the same page.
Workbook activity: Accommodations
Make a list of accommodations that you have relied on in the past in other settings, like school, and some you think may help you in the workplace. Think about the best way to ask for these accommodations. This workbook can be downloaded here.
Disclosure
The issue of disclosure for people with ASD and other “invisible” disabilities can be complicated. Many employees with autism fear being judged due to misconceptions and stereotypes associated with their disabilities. It’s always a good idea to discuss this decision first with someone you know well and trust (a family member, friend, or support person). There are different pros and cons to disclosure that you will have to weigh. But ultimately, the decision of whether to disclose your diagnosis is entirely up to you.
Types of disclosure
- Nondisclosure: Generally, there is no obligation to disclose your disability to an employer until the need for reasonable accommodation becomes apparent. Nondisclosure is acceptable if you have ordinary requests to handle typical issues in the workplace that are not barriers related to your disability. For instance, you don't need to disclose your disability for things such as asking a supervisor to explain confusing instructions or telling your co-workers that you want to relax on your lunch break by playing a game on your phone, rather than socializing.
- Soft disclosure: Many employees will report a barrier they are facing, offer a general description of their condition, explain how their work is negatively impacted and request an accommodation for it. This is soft disclosure. For example, you could inform your supervisor you are getting headaches working under the fluorescent bulbs in your workspace due to light sensitivity. You can point out it is affecting your work and as such, you request softer light bulbs or different lighting over your workspace.
- Hard disclosure: When you know that there is something in the workplace that is preventing you from competing for a job or performing a job well and you need to formally request a reasonable accommodation to assist you, you may need to reveal your diagnosis. You should inform someone who can act upon your request, such as a manager, supervisor, or human resources professional. You should make it known that an adjustment or change at work is needed for a reason related to a medical condition. In some cases, employers do not need to know the specifics of your diagnosis to implement your accommodation. Some state laws, like California, restrict employers from requesting a diagnosis or asking for detailed medical information. Details about the accommodation may be all that is needed. But under the ADA, employers may be able to insist on knowing the name of the impairment as part of determining whether the employee has a covered disability.
Confidentiality
The ADA requires employers to keep all disability-related information confidential. Employee medical information can only be shared with those who are considered to be on a need-to-know basis.
It is not necessary to tell your co-workers and colleagues about either being autistic or needing accommodations. They may become aware of the accommodations you have, if any (like extra breaks or a flexible starting time), but they are not entitled to know why.
Workbook activity: Disclosure considerations
Write down the reasons you may want to disclose your disability and why you may not want to. Share this list with a member of your support network and/or job coach to help you make your decision. This workbook can be downloaded here.
Navigating her differences:
How Amy Gravino turned her passion into her profession
Amy Gravino is a prominent autism advocate, relationship coach at Rutgers University (NJ), media personality and international speaker. But she didn't start out this way. Early in her career she moved across country to Seattle and took her first office job. It would also be her last. She found it through a temp agency that did not specialize in autism or finding employment for people with ASD. There was no on-site support in place; no one for her to check in with or whom she could ask for help if needed. After a series of miscommunications, she decided to disclose her diagnosis to her coworkers. Shortly after, her supervisors decided they no longer needed a temp. But it wasn’t entirely a negative experience. She says it helped her find her purpose and lead her to where she is today.
In 2020, I started a new job as a relationship coach in the Rutgers Center for Adult Autism Services (RCAAS). The timing couldn’t have been stranger, as I was there for all of two days before Spring Break, and then a global pandemic happened. Work finally resumed in person in the Fall of last year, and it some ways, it truly feels like I didn’t start at the RCAAS until then.
As an autistic adult, I’ve had more than my share of disappointing and frustrating experiences with employment. Starting a new job in the midst of a pandemic and waiting a year and a half to even meet most of my co-workers was the last thing I could have expected. The prolonged isolation coupled with the trepidation I felt after my previous jobs left me with feelings of such uncertainty, and questions not unlike the ones I used to ask in my elementary school years:
Will I fit in? Will the others like me? Am I going to be able to do what everyone expects me to do?
Returning to the Rutgers campus in September of 2021 felt like the first day of school all over again. The one established relationship I had was with Dr. Christopher Manente, the Executive Director of the RCAAS. We’d met five years earlier at an event outlining the vision for the RCAAS and then again at a panel I spoke on that was organized by Dr. Manente in 2019, forming a connection that would prove more fruitful than I could have imagined.
As a relationship coach, I work one-on-one with the participants in the SCALE (Supporting Community Access through Leisure and Employment) program and the CSP (College Support Program) to help them navigate issues related to friendships, relationships, and sexuality. And while it may seem ideal on paper to have an autistic adult working in an environment that is all about supporting autistic adults, I have still faced challenges adjusting to and understanding the workplace.
Being the only autistic employee at the RCAAS, my role has extended beyond educating the students to my co-workers, to helping them to reimagine their preconceived biases and ideas about autism. It is an opportunity that I only wish I would have had in previous jobs, where my colleagues’ knowledge and understanding of autism and neurodiversity was extremely limited.
But where the desire to have that understanding was nearly absent from my past workplaces, at Rutgers, my colleagues and supervisors are more than eager to listen, to collaborate, and to learn, and it has made all the difference.
So many autistic adults are still struggling, still fighting to find the job and the workplace environment that is right for them. It took me many years to realize that I need to work in a field and in a position that means something to me, rather than just doing something for a paycheck. When it comes to getting a job, we hear so often that it’s who you know, not what you know that counts.
But what I have learned is that the most important person you need to know is yourself—who you are, what you’re passionate about, and what you need to be successful. Be that person—the person you are, who no one else can be, and the employers who are paying attention, and who understand the value of having different kinds of minds, will stand up and take notice.
Soft skills
While every job requires different technical skills and knowledge, success in any field also depends on soft skills. These include things like work ethic, teamwork, organization, willingness to learn and creative problem solving. It will be important for you to determine which soft skills are important to do your job, and which skills you need to work on with someone.
The difference between soft skills and hard skills is that hard skills can be defined and measured easily. Examples: how many words per minute you type, your ability to use specific computer programs (like Microsoft Excel) and your writing ability.
Soft skills are more difficult to master because the rules change depending on where you are and the people you are with. For example, it is perfectly acceptable to jump up and down and cheer out loud for a teammate who has just hit a home run on the ball field. But this type of behavior would not be acceptable in an office setting after hearing that a co-worker just developed a great new idea.
As you interact with your co-workers, it’s important to know that many people are taught that you don’t discuss religion, politics or finances at work. It would be also important to not talk about other personal topics such as race, sexual orientation or certain physical characteristics (including a person’s age, height or weight) and even someone else’s disability because it could be hurtful or uncomfortable.
There are a number of ways to learn appropriate social skills on the job. One way is to find a mentor at your workplace. A mentor is a positive role model who can guide you, inspire you and support you. A mentor can be someone from your place of work, or even a family member or someone from your community. When you become more experienced, you may wish to mentor other new employees.
Transportation: Getting to work
Reliable transportation to and from the job is critical. You will need to work with your family and your supported employment provider to determine the best options for transportation. Transportation can be done privately if you or someone who supports you drives and has a reliable vehicle. Or you could consider rideshare services, like Uber or Lyft, which use websites and mobile apps to match people needing a ride with a local driver willing to take them where they need to go for a fee. Additionally, you can consider public transportation options such as buses, trains or cab services. Safety should always be considered when making these choices.
Online Transportation Resources
■ Disability.gov – Transportation Options in your State
