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On Empowerment: Where to Begin When Building Self-Advocacy Skills and How to Be a Better Ally

 

Note: This post originally appeared in the Winter 2021 issue of Spectrum

 

For any individual, empowerment is crucial when it comes to the creation of a meaningful life—one that is embedded with communication, choice, and opportunity. These positive outcomes are often spoken about when speaking about empowerment, but there is a dark side… disempowerment. We don’t want to think about bad things happening to the people that we love and care for, but one unavoidable truth is that people with autism can be especially vulnerable to many kinds of exploitation. It’s hard to think about, but there are measures we can take to combat this problem. One thing we can all do is to help teach self-advocacy skills, starting as young and soon as possible. Put simply, self-advocacy means knowing how to speak up for yourself, make your own decisions, and create boundaries.

Disempowerment is avoidable. It has nothing to do with any specific diagnosis and has everything to do with how you, as an ally, chooses to teach, honor, and cultivate self-advocacy skills over time. There are major safety risks in teaching “compliance” (i.e., teaching someone to follow all directions immediately). Not only does this type of teaching eliminate the perception that boundaries are okay, it also teaches that neurotypical adults are the ultimate authority, which over time, may send the message that the neurodiverse voice is less valuable or important. “Compliance”-based teaching or discipline styles often involve the neurotypical adult dominating the interaction, which may squander creativity or punish freedom of expression. Be aware of the impact of how and what you teach. You can help to grow the “No!” and you should.

Self-advocacy builds resilience. It’s vital and important to have these skills in place so we can express preferences, have greater control in our lives, and have these skills to call upon if an exploitative situation presents itself. Self-advocacy is an area we may all need to grow in (neurotypicals and neurodiverse alike). If you are a teacher, a clinician, or a caregiver, we ask that you consider HOW you are teaching this skill currently. What are you doing to give tools of empowerment? Below you will find many suggestions from the two of us, both on skill areas to target and on how to be a better ally; we hope that you’ll walk away from this article with inspiration.

 

Consider these rights as the foundation for our suggestions…

The right to have a communication system that plays to one’s strengths and preferences

Skills to teach: First, focus on developing communication to express basic needs and preferences. This may start with simple gestural exchanges or by guiding someone to an area, may then move into “yes”/”no” choices, and then may develop further, either with spoken language, sign language, a picture exchange system, or the use of a speech-generating device (such as Proloquo2go or Tobi Dynavox).

Be a better ally: If teaching communication skills to a beginner, follow the individual’s lead on communication mode. For example, if the learner is more comfortable gesturing for items, rather than speaking, this may indicate an eventual preference for sign language; if the individual is interested in pictures and is a strong visual learner, this may indicate the appropriateness of picture exchange or a speech-generating device that uses icons. Having visual cues or pictures available for times of stress may help any learner to communicate more effectively. If at some point the learner’s preference shifts, shift with them and mirror their preferred mode.

The right to a patient communication partner

Skills to teach: Practice thinking phrases that indicate the need for additional processing time, such as “Hear me out,” “Let me think about that,” or “Can I get back to you later?” Teach ways to express grievances and preferences, so that the person can address issues after the fact, for example, “Do you mind waiting a little longer next time? I lose my focus when you interrupt.”

Be a better ally: Allow time for the person to respond (silence and pauses are okay), don’t follow up right away or add more words, and wait quietly. Make sure that as a communication partner, you are responding with a communication style that suits the person’s strengths and preferences. If the person is struggling to communicate in their usual form, offer other means of communication like typing together (taking turns) or texting, using communication forms, or drawing. Do not be quick to dismiss or assume that a long pause means that the person would like to talk about it later, rather than now. If in doubt, ask!

The right to having one’s needs met or questions answered in a timely fashion

Skills to teach: Teach the person to ask questions (using their preferred communication form) about anticipated deadlines or events. Develop the skills required to “keep time,” either visually, by using a clock or calendar, or by another system that plays to their strengths (setting a timer and listening for the audible signal). If the other person does not deliver something as promised, practice skills to remind others of unmet needs. For example, after a timer alert has beeped, but the caregiver has not brought dinner, the person can sign for “eat?” indicating that it is time to eat dinner, at the time promised.

Be a better ally: Meet needs within reasonable timelines and keep your promises to the best of your ability! Be a reliable and truthful ally. If you are unable to keep your promises, be ready to explain “why” and provide choices for fair alternatives. Answer questions as timely as possible; if the person asks often, consider incorporating visual or written supports and having them available, such as social narratives or communication boards.

The right to speak up against things that one does not like and establish boundaries

Skills to teach: As early as possible, understand and encourage the person’s preferences and help them to identify the feelings associated. Put very simply, we “like” something if it makes us feel happy most of the time, and we “dislike” something if it makes us feel sad or angry. Encourage the person to say “no” in the face of dislikes. Make it clear that “no” does not require explanation and should be held with confidence (despite duress or pressure). Teach consent, in as many ways as possible, but especially when it comes to body autonomy. This applies to hand-over-hand prompts (e.g., “Can I help you write your name?”) and hugs from relatives (e.g., “Can auntie give you a hug?”) alike. Boundaries can be extremely abstract; begin by teaching concrete concepts (e.g., teach privacy by always stepping out of the restroom while the person toilets), with basic human rights as your guide, and then build into more advanced topics. Use visuals and multiple examples to contextualize.

Be a better ally: LISTEN to the no and respect the “no” in the moment. Later, when emotions have subsided, if you need to know “why not?”, then follow up with the person and ask. Use this as a learning opportunity to identify other preferences so that you can be better in the future. ALWAYS obtain consent before touching anyone or entering their bubble (1-2 feet) unexpectedly. When it comes to boundaries, remember: We are all entitled to secrets. We are all entitled to private spaces. We are all entitled to make choices. We are all entitled to sentimental items. This list goes on… Respect these rights.

The right to a trauma-free environment

Skills to teach: Teach the person how to report grievances to appropriate parties (e.g., “Kim took my iPad”). If this skill is too complex, teach the person to walk away and seek caregiver assistance. As this skill develops, continue to build on other skills such as identifying injuries and alerting caregivers, teaching about “okay” and “not okay” behaviors involving the actions of other people (e.g., aggressive acts, appropriate vs. inappropriate touch, stealing), and discourse. As these skills advance, continue education on learning about rights and rules surrounding consent and social skills regarding understanding intentions of others.

Be a better ally: Do as much as you can to prevent people from observing traumatic events (such as observing another person have a behavioral crisis) or from being put in unsupervised situations if they struggle to advocate their preferences or express grievances (e.g., placed with a child that always steals toys). Protect the person from bullies–both intentional and unintentional! Intentional bullies act from a place of malice to harm another person. Unintentional bullies, which are rarely spoken about, are individuals that may not understand the negative impact on the other person, but can still cause considerable harm (i.e., may hit another person if they get in the way during a crisis). It is imperative that all teachers and caregivers take measures to create a trauma-free space.

The right to have control over one’s own information

Skills to teach: Teach the person about their diagnosis and give them information about it. Help them to understand when or why they might want to disclose information (for accommodations or to a first responder) versus times when it might not be necessary.

Be a better ally: Always pause and think, “Do I need to disclose this information?” before speaking about someone else’s information, even as a parent or caregiver. Is it really relevant to the situation? Is it my information to tell at this moment? There are already so many stereotypes associated with an autism diagnosis… don’t make the person wade through all of the assumptions because you disclosed their personal information.

The right to ask for accommodations

Skills to teach: Teach the person to identify necessary accommodations. Certain times of day or transitions may be more difficult than others, and it may take a second set of eyes to identify these times. With this information, help in structuring a schedule that suits the person and familiarize them with the setting events in which they might need more resources. Teach the person to utilize requests (in their preferred communication method) such as, “I need quiet please,” “Can you show me?” or “Can you type it out instead of saying it?”

Be a better ally: Provide these accommodations and understand that they are necessary for the person’s success. If you see someone struggling to ask for accommodations and see that a meltdown or shutdown may be building, pause and ask the person if they need “x” accommodation (e.g., “Do you want me to dim the lights?”) or begin to decrease the stimulation in the environment if possible (do not ask further questions), then wait and support. After the fact, take note of the context and help the person to identify the potential changes needed in the future.

The right to leisure in the way that we choose and the right to “stim” or engage in activities just because they feel good

Skills to teach: Provide access to a variety of different leisure routines and sensory items to encourage the person to identify things that are preferred and when they might like those things (certain times of day, or upon completing a task). Teach the person how to request the things that they enjoy and how to advocate for sensory needs. For example, “I need a movement break” or the sign for “music.”

Be a better ally: Accept these preferences without imposition or judgement. “Age-appropriateness” is not the goal here. Understand that every person has the right to fully unwind; without the opportunity to access leisure that is free of impositions, a full “unwind” will be hard to come by. If you’re in charge of a loved one’s schedule and daily routines, make sure you intentionally carve out leisure time that is led by the person. Provide access to stim toys/equipment (e.g., a swing, trampoline, or headphones/music) and always give enough free time to have sensory needs met. We all just need to do “our thing!”

The right to social preferences

Skills to teach: Teach the person how to express their social preferences, whether it be that they want to be alone, just with family, or with friends. Continue to fine-tune these skills by teaching the person to identify the level of interaction they want to have, such as going to an event to see people, but not staying for the event’s entirety.

Be a better ally: Respect the preference and let that person take the lead. Get rid of the iteration that there is any sort of “correct” preference. Recognize that everyone has different social preferences, and these may change daily. Always check in. And remember that while some things may be obligatory (such as school), other things are not (a birthday party on the weekend). Don’t sweat the small stuff—preserve social energy for when it matters.

The right to procrastinate

Skills to teach: Teach the individual how to gain “social permission” to access more time with other activities they’re already engaged in (e.g., “Can I finish this first?”), how to postpone things to a certain time in coordination with someone else (e.g., on device navigates to “ok, after lunch?”), or how to re-prioritize the requirement based on needs (e.g., “I don’t have the energy today, maybe tomorrow instead?”).

Be a better ally: Respect communication and be amenable. If the person does not communicate this need, but you see that they may need an accommodation (e.g., are fixated on finishing one task first), provide the delay regardless and acknowledge it (e.g., “Hey, I’m sorry. I see that’s important to you… Let’s do ‘x’ after”). In general, allow the person to finish one project before you expect them to start something new and allow extra time when shifting focus from one kind of task to a different kind of task (it is often necessary!).

The right to know “why” and the right to contradict false information

Skills to teach: Teach the person how to ask for explanations, such as “why” things are necessary or “why” things may be different in the routine for the day. Teach the person to speak up when someone says something untrue that affects them or is about information relevant to them (e.g., “My birthday is actually in June”). Teach the differences between “truth” and “lies,” and “intentional lies” versus “misspeaking.”

Be a better ally: Provide context and explanations voluntarily, as appropriate. Be literal and concrete. Information doesn’t always have to be verbal; you can also write it down or draw a picture. Always aim to speak from fact and give true information from the start! Avoid “half-truths” or lies, even if trying to prevent conflict. If you misspeak, label it as such—but do not abuse the term to explain “half-truths” or lies.

The right to be upset and the right to access one’s calming strategies

Skills to teach: Teach the person that all emotions are perfectly normal and okay! It’s hard being a person and sometimes we all get upset. Teach the person to recognize feelings, request breaks to calm, and teach them different calming techniques that they can utilize when they need them.

Be a better ally: Support the person if you’re wanted. Back off if you’re not. Acknowledge and believe that calming tools are NECESSARY… they are not “special treatment.” Respect what is a “big deal” to the person, even if it’s not a big deal to you, and remember preferences moving forward. Always validate emotions (e.g., I know that this is tough… I’m here for you”); do not discount the experience.

The right to make mistakes, to have the “dignity of risk”

Skills to teach: Teach yourself to SIT. BACK.

Be a better ally: Everyone has the right to self-determination, and part of that is being allowed to make choices. Some choices might turn out to be mistakes, which is okay because all people make mistakes. We can learn and move forward. Allow the person to make their own decisions even if they aren’t the ones that you would make for that person. Offer support and validation.

 

Empowerment can begin with just one single, definitive response… What will you teach?

How will you become a better ally?

 

Additional Resources:

Autism… What Does It Mean To Me?, by Catherine Faherty, which is a workbook about self-awareness and life lessons for individuals with autism.

Communication: What Does It Mean To Me? A “Contract for Communication” by Catherine Faherty, which is a guide on how caregivers and individuals with autism can communicate with one another most effectively.

Integrated Self-Advocacy ISA Curriculum: A Program for Emerging Self-Advocates with Autism Spectrum Disorder and Other Conditions, by Valerie Paradiž, which targets transition-aged individuals and emphasizes self-awareness of their expression and experience of autism, as well as individual agency for current and future advocacy.

Autism and Learning Differences: An Active Learning Teaching Toolkit, by Michael P. McManmon, intended to help professionals “impart essential life skills,” including self-advocacy.

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