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Self-Advocacy Toolkit - Online Version
Table of Contents
Introduction Where Do We Get Started? How Do I Know What I Need? Self-Advocacy Across Settings Self-Advocacy at School Self-Advocacy In the Workplace Self-Advocacy in the Community Self-Advocacy at Home How Can I Get What I Need? When Self-Advocacy Isn’t So Easy How Do I Navigate My Self-Advocacy? A Brief Note for Parents and Caregivers For More Information
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Introduction
Whether you are an Autistic person, a parent or caregiver, or a professional you have likely heard ad nauseum about the importance of self-advocacy, especially as an independent living skill. With good reason too!
Self-advocacy is one of the most important skills we can practice because we know our needs better than anyone else and the way we advocate for our own needs can make a big impact on how we are able to meet them! We can all benefit from treating self-advocacy both as something that we are entitled to as people and something we can practice to become more successful at.
But what is self-advocacy, exactly? Most of us might think of self-advocacy as speaking up on our own behalf, and that is certainly part of it, but is that all there is to it? Why does it come up for Autistic people so much when it’s something everyone needs to do? And if it’s so simple then why can it be so difficult sometimes? Let’s find a starting point!
Self-advocacy can be broadly defined as a collection of actions that center around one’s autonomy. Whatever we do to identify and meet our own needs could be considered an act of self-advocacy. That’s a lot of different things that fall under the self-advocacy umbrella, and we all excel at some forms of self-advocacy more than others.
Self-advocacy is an especially important topic for Autistic people because historically Autistic people have had to fight for their autonomy. Historically, a professional might have made a determination about an Autistic person’s needs based on their own assessment and opinions.
Today it is much more widely recognized that Autistic people should have as much autonomy as possible over their own choices and that any assistance offered to Autistic people should support that autonomy. While there is still a long way to go, all of the progress made so far is thanks to the tireless efforts of Autistic self-advocates, as summarized in this study.
So the purpose of this toolkit is twofold: to explore the ins and outs of self-advocacy so we can practice it more effectively, and to reinforce that self-advocacy is our right and we should be able to advocate for ourselves even in the face of people who might think we shouldn’t have a particular accommodation or control over our own important decisions.
If you are an Autistic self-advocate reading this toolkit, we hope you will take away some helpful strategies for deciding how best to self-advocate and the knowledge that you can speak and act on behalf of yourself and your own needs, and the fact that some people might be less than helpful does not change that reality.
Who Is This Toolkit For?
This toolkit is primarily intended for Self-Advocates, but can also benefit Family Members, Professionals, and Community Members seeking to better support the Autistic people in their lives.
In whatever role(s) you may occupy, you can use this guide to support your knowledge on the topic and to share with others you think might benefit.
Let’s Focus On
We have talked quite a bit about what self-advocacy means already, but what does it mean to us in practice? One helpful way to break it down is to think of it in terms of a few core questions:
- How do I know what I need?
- How can I get what I need?
- What am I going to do about it?
While there are lots of ways we could break down the huge umbrella term of “self-advocacy,” these three questions cover the core practical components of self-advocacy and the ways we might choose to navigate any situation in which a personal need arises. We will be breaking these questions down a little further a little later on.
Why should Autistic people practice self-advocacy skills? Because historically Autistic people have been denied their autonomy across many different settings and may find themselves in more situations where practicing self-advocacy isn’t as simple as deciding what you need and getting it.
Research shows that the self-advocacy skills of many Autistic adults can be heavily influenced by the expectations and attitudes of their parents/caregivers. The same is true of other adults in a given individual’s life.
Self-advocacy itself is a predictor of employment, education, independent living, and other adulthood outcomes. So self-advocacy is not only important for many different important life needs, many Autistic adults find themselves with gaps in self-advocacy skills for reasons entirely out of their control!
"There is mounting evidence that self-advocacy, determination and including autistic individuals in the educational discussions and research about them leads to positive outcomes that include achieving academic goals, independent living, improved confidence and employment outcomes.”
Throughout this toolkit, we will refer to self-advocacy as the practical set of skills we learn in service to our own needs, goals, and wellbeing. We will talk about navigating difficult moments of self-advocacy with an eye toward reminding people that they can choose to do what feels best and safest in the moment. But it is always worth remembering that practicing self-advocacy is part of the beautiful process of Autistic people reclaiming their own autonomy from a world that does not always want them to have it.
Where Do We Get Started?
Before we get back into our big three self-advocacy questions, let’s think about some of the day to day actions we might take in practicing our own self-advocacy. Whether or not you are conscious of your own self-advocacy, there’s a good chance you are doing most of these things every day in some way!
Determining Our Needs
The first step of self-advocacy is not demanding what we need, but understanding what we want. The fiercest self-advocate in the world might procure all that they ask for but struggle with knowing what they really needed in the first place!
Making Choices
Making choices is at the core of self-advocacy! Every time we make a choice we are practicing self-advocacy by working toward the thing that we want rather than relying on someone to decide for us.
Navigating Conflicts
Self-advocacy is a cornerstone of navigating conflict both in the sense that practicing self-advocacy can sometimes lead to conflict and that it can be an act of self-advocacy to decide that it would be better to give up on a particular conflict even if it means not getting what we want.
Making Big Picture Decisions
Deciding on big questions like the direction you want to go in life, who you want to spend your time with, and more are all components of self-advocacy that we might take for granted up until someone else decides for us or makes clear that their expectations differ from our needs and goals!
Maintaining Self-Awareness
Self-awareness is both a component of knowing what we want and whether we are making as much progress toward our goals as we want.
Sharing Our Opinions
One crucial component of self-advocacy is the idea that we all have value as people, and by extension our thoughts and opinions have value. Sharing our opinions even when not everyone might agree is another form of self-advocacy in the sense that it values and promotes our own thoughts and beliefs.
Seeking Assistance
One classic form of self-advocacy that most people are likely to be familiar with, seeking assistance is one way we can let people know about our needs and try to meet them when we are not able to fully do so on our own.
Self-Empowering
Any time we take the steps to do what we need to do to meet our needs, we are practicing self-advocacy by acting in our own self-interests, promoting our autonomy, and meeting our own wants and needs.
The actions and skills we might use in a given situation are likely to vary based on the specifics of our needs, the people who can help us, gatekeepers, and our own ability to meet our needs. If you find yourself wishing you were better in a particular area or skillset, that is a great sign that it might be worth practicing!
How Do I Know What I Need?
Self-Reflection Questions
Answer the following questions to guide you in figuring out what you may need to focus on now – each one has examples answers to provide perspective or guidance.
What am I focused on right now?
Example answers:
- I’m thinking about my long-term goals.
- I’m really really hungry.
- Something feels off and I can’t explain why.
- My situation at work.
Do I ever find it challenging to figure out what I need or want in this situation? If so, what is the main thing that makes it challenging?
Example answers:
- I don’t really know what I want to do in the long term yet.
- I know that I’m hungry but it’s hard to know what I’m really craving.
- Sometimes I can’t interpret the signals my body is sending me, so I can’t always directly identify the sensory input that is bothering me.
- I am having trouble weighing the pros and cons of seeking career progression and focusing on a job I like.
What strategies could I use to try to address that challenging thing?
Example answers:
- I could do more research into the careers that interest me to see if one really stands out.
- I could try a little bit of a few different foods to see what is most satisfying right now.
- I could use process of elimination by seeking out different sensory inputs in the environment and see if the feeling goes away when I eliminate them.
- Write down all of the pros and cons and try to weigh them together with the help of a visual.
What strategies could I use to try to work around that challenging thing for now?
Example answers:
- I can choose the best answer for me now even if it doesn’t seem perfect, knowing I can change later.
- I can stick to my safe food since I can rely on that being at least somewhat satisfying.
- I can temporarily remove myself from the situation to determine if any localized sensory input is the thing that’s bothering me.
- Consider what advice I might give to someone else who was in the same situation.
Self-Advocacy Across Settings
Now that we’ve touched on the basic building blocks of self-advocacy, it might be helpful to hone in on the settings in which we most often practice it. Self-advocacy can look very different across different settings, and the way we approach different situations within those settings.
As you are likely well aware, even when we advocate for ourselves we do not always succeed or get what we want, and sometimes we have to make judgment calls in the situation we are in as to whether it is better for us to continue pursuing our want or need, to try a different strategy, or to take a step back to preserve our comfort or wellbeing.
So let’s look at some settings and some approaches we may consider for different types of self-advocacy situations within those settings!
🏫 At School
🏢 In the Workplace
🚋 In the Community
🏡 At Home
Self-Advocacy at School
School presents a unique relationship with self-advocacy in that we are often taught and encouraged to practice self-advocacy in school, but school is also rigidly structured enough that many forms of self-advocacy we might practice in other settings will look very different in a school setting.
A classic example is that school is one of the few settings where we need to ask permission to go use the restroom! Even if it might be frustrating at times, we still have to navigate the structures of school and advocate for our needs to the best of our abilities!
What is a gatekeeper?
"Gatekeeper" is a broad term for any person who stands in the way of the thing you need, whether that is access to accommodations, a promotion, or medical care.
Regardless of setting, the key feature of a gatekeeper is they have the power to allow or deny you what you are advocating for.
Sometimes you might find a way around a gatekeeper, other times getting permission from a gatekeeper might be the only way to meet your goal.
With Classmates
Self-advocacy with classmates can be way less formal than self-advocacy with teachers but can be just as intimidating! Sharing our opinions, asking to join groups, and seeking assistance are all forms of self-advocacy we might pursue with classmates.
Even though our classmates do not have authority over us, we may care about what they think of us and feel the urge to defer to their opinions and preferences. Classmates are a great example of how it can be tough to practice self-advocacy even when we know it’s a good thing.
Individualized Education Plan (IEP) and other Services
If you have an IEP then you are legally entitled to be present at your IEP meetings, but what exactly can we advocate for in those settings? Self-advocacy in an IEP setting can be a hugely valuable tool, as it is one of the main spaces where your voice can help to shape your educational plan in a way that aligns with your long-term goals.
The challenge of self-advocacy in these settings of course is that we don’t always know exactly what we want long-term, and that there are other people in the room who may have opinions on what would make for the best plan. Self-advocacy in this setting is also a great way to practice asserting your needs with people who have authority over you. Finding the right balance of respect and assertiveness can be a tricky process, and a setting where everyone is working together on your behalf is a great place to practice.
Seeking Accommodations
Seeking accommodations at school can be a little different compared to other settings because the school may very well have a variety of accommodations prepared for Autistic students but may also struggle to accommodate unique requests.
If you have an accommodation need that doesn’t align neatly with available accommodations it is OK to advocate for your unique need. Even if the school ultimately cannot offer the specific accommodation you need, it is still worth treating your needs as valid and important.
Disclosure
Disclosure works a little differently at school than at other settings in that you may not have much control over who knows you are Autistic and who you can choose to disclose to. While disclosure can be an important component of self-advocacy in some other settings, at school it may not come up as often. Nonetheless in any setting, the decision to disclose is always yours and a balance of your desire to share your identity, your desire to avoid negative reactions, and in some cases your need to disclose to access certain accommodations.
Self-Advocacy In the Workplace
Self-advocacy in the workplace, like in many other settings, can involve balancing a variety of different priorities to try to reach your goals as best you can while valuing your own needs and beliefs. But in the workplace, the stakes can feel even higher because it represents our livelihood.
For many of us it might also represent some of our most important personal goals! How do we balance the reality that it’s reasonable for us to, say, seek out certain accommodations while considering the ways that raising a big fuss might impact our long term career goals? There are no right or wrong answers, only skills we can practice and goals and needs we have every right to advocate for.
With Coworkers
When it comes to our coworkers, some of the most challenging forms of self-advocacy can be vouching for our own ideas or observations when everyone has a stake in the outcome of a project or situation. Taking credit for your good work and seeking out career advancement are other examples of self-advocacy that might require navigating relationships with your coworkers.
Sometimes our coworkers might have different ideas about how to get things done or be competing for the same types of opportunities we are! When we advocate for ourselves in those settings, there is always the possibility of confrontation. One thing that can help for those of us who tend to avoid conflict is to remember that we all need to practice self-advocacy to succeed in our work settings, and anyone who would get upset at you for doing so is not someone who is keeping your best interests at heart.
With Management or Bosses
Whereas the possibility of conflict and competition can sometimes stifle self-advocacy among coworkers, the scary part of self-advocacy in the fact of management or a boss is the power and authority they hold over you. Whereas we may not be competing with our boss to have our idea heard, our boss might decide that our idea is not worth pursuing and tell us to focus on other things. In that sense, repeated self-advocacy can become discouraging when it is not successful.
While it is true that some forms of self-advocacy, such as asking for accommodations, still leaves you with some leverage even though your boss does have authority over you. But for the majority of self-advocacy situations involving a boss who might act as a gatekeeper, one helpful navigation tool can be to find scripts that frame your self-advocacy in terms of how it might help your boss meet their goals.
Seeking Career Progression or Higher Pay
Perhaps one of the most important forms of self-advocacy at work can be the way we seek out career progression and higher pay, since the outcome of that self-advocacy can have such an impact on our lives and livelihoods.
While it might go without saying that we should say so when we are seeking career advancement or higher pay, another component of this skill worth considering is the steps we can take to ensure we receive higher pay or career progression, such as seeking new jobs outside our current one, using a job offer as leverage, or taking a new job if it is a better opportunity.
Seeking Accommodations
In the workspace, one of the most important parts of practicing self-advocacy is awareness of your rights and awareness of who to ask. Knowing what you are entitled to ask for can be a big difference-maker, especially if you encounter resistance in some form.
If you have received an official Autism diagnosis then the most important thing to be aware of is your rights under the Americans with Disabilities Act. In particular, under the ADA people who legally qualified as disabled are also entitled to “reasonable accommodations” to make workplaces accessible.
If you are denied a reasonable accommodation in your workplace, it may be worth considering consulting with human resources about your rights under the ADA.
If you do not have an official diagnosis, then your workplace is not legally required to offer you any accommodations and part of practicing self-advocacy in that setting might be trying to convince your workplace that a particular accommodation is beneficial and worthwhile.
Disclosure
Everyone may have different feelings about disclosure in the workplace. If you have an official diagnosis then you only need to speak with human resources to receive those accommodations, but for many Autistic workers that is the real sticking point.
A survey of 985 Autistic workers showed a much higher comfort level with disclosing to colleagues rather than officially disclosing to HR.
Another study suggests that Allistic colleagues have a better impression of their Autistic coworkers after disclosure than before. But it is also true that everyone’s situation is different, and you are ultimately the best judge of what feels safe, appropriate, and necessary for your workspace.
If you feel stuck on what to do in your workplace, this free decision tree may be a helpful way to organize your thoughts.
Choosing or Eating Food
Restaurant Choice
When it comes to choosing a restaurant we all have different self-advocacy styles. Some of us would rather avoid an argument and defer to what someone else wants to do. Others might have specific sensory needs when it comes to food and need to advocate strongly for the food they can enjoy. Others still might be somewhere in the middle, not wanting to ruffle feathers but struggling with some of the restaurant options the group goes with.
One great way to practice self-advocacy in this situation is to practice being the one who asks if everyone wants to go out to dinner. Instead of suggesting dinner generally, you can suggest the restaurant directly.
If someone disagrees it is up to you whether you would rather advocate for your choice or defer; finding ways within your comfort zone to practice self-advocacy can be a great starting point for eventually working on expanding your comfort zone!
Substitutions
A common theme we might notice in food is that we sometimes have specific preferences that are very important to us but we also don’t want to be seen as a fuss or a bother. Some of us might have even had the experience of being told we are difficult for having specific food preferences, and asking for substitutions is a classic situation where this conflict between practicing self-advocacy and going with the flow can come up.
For those of us who are conflict averse, one helpful turn of phrase is “Is it possible to…” It is a helpful phrase because we are letting the server know we do not plan on arguing if they cannot fulfill our request, but we are still practicing self-advocacy by taking a step to try to meet our preferences and needs.
Comfort Foods
Those of us who rely on our comfort foods regularly may have had the experience of people commenting on how much we eat our comfort food or perhaps even suggesting we need to expand our horizons.
If you have particular comfort foods you rely on but dislike the attention it can bring sometimes, self-advocacy can take all sorts of forms.
The most obvious is standing up for your needs and continuing to eat what you want, but it is also perfectly valid to choose not to eat with someone who comments on your food choices, or find a private space where you can eat in comfort.
Accommodations
While it is possible you may seek out some sensory accommodations at certain restaurants depending on your needs, the main way a restaurant might accommodate our needs is to alter a dish or menu item to meet our sensory preferences.
As we noted above, some restaurants may choose not to allow alterations or it might simply not be possible with some dishes. But it is reasonable to ask, and a restaurant can be a good setting for practicing asking for small accommodations!
Disclosure
When it comes to food and disclosure, some might not really see a connection at all while others may have found themselves in situations where they felt the need to “explain” their food preferences due to scrutiny or frustration.
As always, why you prefer the foods you do is your business and other people should mind their business. But that’s not much comfort if you are stuck in a situation where someone is making those kinds of comments. If you feel that disclosing might be a helpful way to get them to stop then it is OK to bring it up!
Self-Advocacy in the Community
Self-advocacy in the community can once again take a wide variety of forms. The act of seeking out resources that benefit you in the community is self-advocacy in its own right, as is pushing back when an institutional gatekeeper keeps you from accessing resources you think you should be able to access.
The types of skills we work on to practice self-advocacy in the community can vary from executive functioning to practicing standing up for ourselves in difficult situations.
Accessing Community Resources
Sometimes accessing community resources is as simple as going and getting what you need while other times it is a complex process of self-advocacy with lots of hurdles and pitfalls. Accessing a particular resource in the community may involve securing transportation, convening with members of your support network, securing enough money, having the right paperwork, and a litany of other requirements.
One good way to navigate accessing resources in the community is to practice our planning skills, clearly writing out our goal and listing all the components we need to meet it.
While it might not be necessary every time you run to the convenience store, it can be invaluable for a big grocery run, a trip to the DMV or a doctor’s appointment where you need to let them know you have new insurance.
Talking to Strangers
One reality of being out in the community is that we will often have the opportunity to interact with strangers, and sometimes strangers will try to interact with us when we are not seeking it out. In both cases, a helpful way to practice self-advocacy can be with scripting.
Necessary interactions with strangers in public are usually more routine like checking out with a cashier or ordering from a restaurant and a simple script can apply in lots of similar situations. Likewise, it can be helpful to have a scripted comment ready for an unwanted interaction in public so that you do not have to think of the “right” thing to say while in a stressful situation.
Consider the “talking with strangers” situations you find yourself in most often, as well as the ones that you are most concerned about, and consider planning a few simple scripts of what you’d like to say in those situations. While no script is perfect in every possible situation, it is a valuable starting point that works especially well for brief interactions.
Friends and Relationships
One of the most wonderful things we can experience in the community is making friends and finding relationships, yet it can also be one of the most challenging areas to practice self-advocacy.
Whereas we might worry about standing our ground with a stranger due to general conflict aversion, we might not want to disappoint the people we care about or decide we are flexible enough to go along with whatever they are saying.
There’s absolutely nothing wrong with doing this sometimes, but if you find yourself stuck in that pattern then it can be an important form of self-advocacy to try to identify those moments that are most important to you so you can advocate for yourself when it matters most.
Seeking Accommodations
One of the most important areas to consider your legal rights when it comes to accommodations in the community is transportation. If there is an obstacle making your local public transportation inaccessible to you, it is worth trying to contact your local transit authority to explain the gap and hear what options they might be able to offer you.
While it can be a little more complicated than accommodations in the workplace, the ADA still protects you and allows you to request reasonable accommodations in a public transportation setting!
If an obstacle has historically kept you from accessing a particular type of public transportation, seeking out ways to overcome that obstacle can be a powerful form of self-advocacy that if successful can help you access a much wider area of the community!
Disclosure
Disclosure in the community is highly situational and personal. For those who are very open about their identity it just might not come up that often in conversation. But there may be situations where disclosing might be important to securing an accommodation or to share about yourself, and it is up to you to make that judgment call.
Disclosure is a classic example of self-advocacy because there is no objectively right or wrong answer as to what is best, only your best judgment as to what you think would be most helpful in the situation you find yourself in.
Self-Advocacy at Home
With Family Members
Family members represent a combination of authority and familiarity that we don’t often find in other areas of our lives. When practicing self-advocacy we might need to consider our relationship with each family member before we proceed. Is the person I am talking to going to take me seriously if I practice self-advocacy?
Do I feel comfortable having some conflict with them? What authority do they have over me? These are all things we might consider before we choose how to act on our needs and preferences around family members.
One helpful thought exercise can be to consider each of your family members and on a scale of 1 to 10 assign a number that matches your confidence level practicing self-advocacy with each person. That can be a great starting point, and sometimes if we need to practice self-advocacy with a more challenging family member it can help to talk to someone easier first!
With Roommates
Roommates operate on a slightly different dynamic than family members as you exist on much more equal footing. The friend you rent your two bedroom with can’t exactly ground you or send you to your room! But we still live with our roommates and have a major impact on each other’s lives.
Practicing self-advocacy in some cases might be accepting the possibility of some conflict so that you can come to an agreement about how the living space functions.
In other cases it might be softening your reaction so you can both focus on resolving the issue at hand. When discussing an important topic with a roommate one helpful strategy can be to script out your main point, then bullet point a few reasons about why it is important as the basis for conversation.
While you cannot script the entire conversation, it can be a helpful starting point especially for a difficult conversation!
Arranging Your Space
One underrated form of self-advocacy in our living spaces is that we can choose how we want to arrange them to reflect our styles, tastes, and preferences. Arranging our space can require a degree of executive functioning to plan out, but most importantly requires self-awareness to sense what feels right to you.
Arranging your space can also be a great way to practice self-advocacy, as you can directly decide what is right for you without needing to justify or explain, and can just focus on what it is that you want. So if you find yourself having a hard time with the first steps of self-advocacy, thinking about the arrangement of your space can be a helpful step!
Seeking Accommodations
Seeking accommodations at home might take two different forms depending on how we mentally frame it. One is seeking out accommodations that are currently inaccessible to us, such as a nice set of noise-cancelling headphones for when the family gets loud or a designated decompression space because there simply isn’t enough space in the home.
Alternately, there is the framing of asking roommates or family members to recognize our needs and take small steps to help us meet them. It can be especially tricky to navigate a dynamic where a roommate or family member refuses to accommodate a particular need, as at least when the problem is accessing an accommodation you are working together toward eventual access.
When a family member is particularly stubborn, one way to continue practicing self-advocacy without constantly acting in conflict is to put a time on how often you bring up a particular topic, whether it is once every few days or few weeks. Sticking to a specific time interval can limit the stress of feeling like we are always in conflict with a roommate or family member who is already reluctant to help us meet our needs.
Disclosure
This section will most often apply to roommates, though adults who discover later in life might also wonder whether they want to tell their family members or not. On the one hand, we are never obligated to disclose to anyone and there isn’t necessarily a specific practical reason why a roommate would need to know.
On the other hand, we live in close quarters with our roommates for an extended period of time and many Autistic people might find hiding their identity at home in that way is too painful to seriously consider.
If you find yourself uncertain of what you want to do, a pros and cons list might be a helpful starting point. It is your identity and you are allowed to consider the practical implications alongside the general importance you place on being open about yourself.
How Can I Get What I Need?
Self-Reflection Questions
Now that we have covered some of the ways we practice self-advocacy across a variety of settings, let’s consider some strategies we can use to engage in self-advocacy in our day to day lives. Let’s dive in by visiting the second part of the questionnaire and asking ourselves how we can act on our needs.
What is the most obvious path to getting what I need?
Example answers:
- I’m not really sure there is an obvious path.
- I could go to the fridge and eat some leftovers.
- Figure out what’s wrong so I can deal with it.
- Making sure my boss knows I want a promotion.
What is the biggest obstacle to getting what I need?
Example answers:
- Figuring out exactly what I need to do.
- Working up the energy to get off the couch.
- There are lots of sensory inputs to test in this space.
- One of my coworkers will likely take it personally because he also wants the promotion.
How can I manage the obstacle I am facing?
Example answers:
- I can research some basic ideas to see if it gives me any ideas.
- I can think about how great it will be to enjoy those leftovers once I get up.
- I can try to eliminate each sensory input one at a time to see which are bothering me.
- I can accept that it’s not my job to defer to my coworker and if they get upset about it that’s their problem.
What alternative steps could I take?
Example answers:
- I could just focus on the present and not worry too much about planning for the long term.
- I could order delivery so I have another 20 minutes before I need to get up.
- I could find another space to do my work.
- I could decide not to pursue the promotion because I don’t want conflict.
When Self-Advocacy Isn’t So Easy
One unfortunate reality about self-advocacy is that as much as we encourage Autistic people to practice it, in the real world Autistic people who do practice self-advocacy are often subject to considerable pushback, questioning, and ostracization. While we strongly encourage the practice of self-advocacy, we also think it is important to be realistic about the world we live in and the reality that self-advocacy is not always rewarded.
We think it is important both to create realistic expectations about practicing the complex skill of self-advocacy and to ensure self-advocates that when they face pushback it is not inherently their fault. While there are always new strategies we can take on to try to navigate difficult situations, there is also no perfect behavior that will make unkind people nice.
When you find yourself running into a situation where your self-advocacy is becoming a source of stress, or you feel like you are not getting out what you are putting in, you are well within your rights at any time to reevaluate your strategy, invest a different amount of energy than you were previously putting in, or decide it’s not worth it altogether.
You are not obligated to push back against gatekeepers and you are not obligated to give up the first time you meet resistance against your self-advocacy - the important thing is what feels right for you in pursuit of your needs and goals while accounting for your comfort level and social battery.
Your Rights as an Autistic Person
One major component of self-advocacy, perhaps the one we first envision in our head when we hear that term, is standing up for our rights in the face of institutional resistance. After all, advocating for one’s own rights is both admirable and hugely beneficial when advocacy is successful. But what rights do we have exactly? And what requires more careful navigation?
When it comes to specific rights associated with an Autistic identity, the ADA covers the vast majority that we associate with adulthood and independent living. While we strongly encourage self-diagnosis as a valid way that many people find out they are Autistic, it is important to note that when it comes to your legal rights ADA protections only apply if you have an official medical diagnosis.
That means if you are self-diagnosed with no other legally qualifying disability and find you benefit from certain types of accommodations, you may need to convince your employer that it’s worthwhile to grant those accommodations because they are not legally obligated to grant them to you.
Alternately, if you do have an official Autism diagnosis, employers are required to offer reasonable accommodations to make the workplace accessible to you.
If you need to resolve a dispute regarding a reasonable accommodation or request one, you will need to disclose your Autism diagnosis to your organization’s human resources representative so that the organization knows they have an obligation under the law. If you choose not to disclose your diagnosis then you cannot claim legal protection under the ADA without another qualifying disability.
Some Autistic people may not see a dilemma at all about disclosing their identity, while others may worry about their workplace having that information about them and whether it will lead to de facto discrimination.
Ultimately the choice for many will come down to the importance of the accommodation they are seeking. Those who need it might have no other choice but to disclose, whereas those who don’t feel a strong need for an accommodation might decide it’s better not to talk about it at work. As always, the best choice is the choice that you are most comfortable with and will help you best succeed in your workplace!
For any people who might be reading this who have decision making power in a workplace: one of the greatest things you can do as an ally in the workplace is open up the accommodations process, and encourage people to use accommodations if it helps them do a better job or it makes the space more accessible.
While there may be logistical limits on some specific types of accommodations, the more that organizations can be open about treated accommodations as the tools they are, the less Autistic workers have to worry about whether it is worth disclosing.
How Do I Navigate My Self-Advocacy?
Self-Reflection Questions
For our final questionnaire we shift our focus to making choices, the impact we hope to have, and how we might choose to adjust after the fact if necessary.
What’s the next step I can take?
Example answers:
- Researching my options seems like the only reasonable choice.
- I have to get up off this couch.
- Step out of this space and clear my head.
- Talk to my boss during our 1 on 1 meeting.
What do I hope will happen?
Example answers:
- I hope I will get a clearer sense of what I need to do next and what seems most interesting.
- I hope I can quickly eat these leftovers so I can get back to my game.
- Once I decompress I hope I can more easily identify the source of my discomfort.
- I hope the boss will say she has been considering me for a promotion too.
Is there anything else I want to try?
Example answers:
- I could ask some of my friends about their long-term plans.
- Maybe I’ll just have some pretzels for now.
- Put on my sunglasses because part of me thinks this overhead light has a lot to do with the problem.
- I want to check in with my boss and see if she thinks there are any ways I can work on my skill set or show improvement.
How did it go?
Example answers:
- I still don’t feel certain, I think I might need help.
- Great! Leftovers are always better the next day.
- OK - I feel better but I’m still not sure exactly what is bothering me.
- Good - the boss says she will consider me. But she did suggest a lot of things for me to improve on.
Is there anything you want to change based on how it went?
Example answers:
- I want to talk to some friends and my mom.
- I should order pizza more often.
- I had better remember my noise-cancelling headphones next time.
- I want to pivot my focus to working on some of the skills my boss talked about.
A Brief Note for Parents and Caregivers
If you are a parent or caregiver who has been reading a lot, you may have noticed a few persistent themes: self-advocacy is important, self-advocacy isn’t always easy, and self-advocacy is a skill that we can practice.
You may have also noticed the attention we drew to the contrast between the way that Autistic people are often encouraged to practice self-advocacy versus what can happen when they do practice self-advocacy. As a parent or caregiver seeking to support an Autistic child or adult in practicing self-advocacy skills, you may be wondering how to best offer them that support without undermining their autonomy.
A great starting point is always to make it known that they can come to you with questions or if they need support in a challenging situation. While it may be tempting to intervene in some situations, it is important to give people who are learning self-advocacy skills the opportunity to navigate new situations, practice, and in some cases fail! Likewise, it is just as important to be ready to step in when you both agree that is the best path forward.
Getting assistance in and of itself is not a failure - getting assistance is in fact a crucial component of self-advocacy! The core issue at hand is whether the person in question has decided that they are ready for help, or whether you have intervened before they get a chance to work on their process.
When you and the person you are supporting are on the same page about it there are lots of ways to offer assistance! For complex examples of self-advocacy one of the best things you can offer is to help with some of the executive functioning work that can come with it.
Say, for example, the person you are supporting is seeking an accommodation at university, but nobody seems to know what office handles those requests. While the person you are supporting might ultimately need to start and see through the process, you can cover some of the legwork of finding the right department, filling out paperwork, or waiting on the phone.
At the end of the day all we want is to be in the corner of the person we are supporting and helping them work toward their goals. As with other areas in life you can support them both in practicing their autonomy and responding to their stated needs.
For More Information
Here are some more resources for you to explore on this topic area. Note that not all information presented on these sites is neurodiversity-affirming.
Research
Frontiers in Psychology
Self-advocacy and self-determination of autistic students: a review of the literature
Advances in Autism
Autism & Developmental Language Impairments
Resource Page
Americans with Disabilities Act of 1990, As Amended
ADA.gov
"Should I Disclose?" Decision Tree
Autism Grown Up
Blog/Article
Autistic Workers Often Avoid Disclosing Their Condition to HR. Here’s Why
SHRM
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