Spotlight On: Person-Centered Projects

Self-advocacy means speaking up for yourself. It means telling people what you need. This can be hard when you have autism. Talking with other people can be hard. It can also be hard to tell people what you need. You can learn these skills with practice.

Autism is called an “invisible disability.” This means you may not be able to tell that someone has a disability just by looking at them. Other people may not know when you need help. They may not know when you need a change. You may need to speak up and tell them.

Generally speaking, self-advocacy means:

• Speak up for yourself
• Make your own choices
• Know your rights and what you need to do
• Solve problems
• Ask for help when you need it
• Build friendships

Self-advocacy helps you know what you need and tell others about it. It helps you make choices about your own life. It includes:

• Knowing yourself
• Thinking about what other people may think
• Knowing what to ask for
• Giving clear details

Knowing yourself:

To speak up for yourself, you need to know yourself well. Know what you do well. Know what is hard for you. Know what help or changes make things easier.

Thinking about other people’s points of view

Think about other people and where you are. This can help your request work better. For example, if music is too loud in a restaurant, ask to sit in a quiet area. Other people may still want to hear the music. You do not need to ask them to turn off all the music.

Knowing what to ask for

Know what help or changes you need to do your best. An accommodation is a change or help that makes things easier for you.

Giving clear details

People may be more willing to help when they know why you are asking. Tell them what is hard for you. Tell them what helps you. This can help people understand you.

Help the individual understand their accommodations

Help the individual identify the accommodations or changes they use, or have used in the past, to be successful at home, school, work, and in social situations. Help the individual come up with simple phrases that explain what they need. Help them to practice saying these phrases with others.

Start with what feels comfortable

Begin by asking the individual how they would prefer to advocate for themselves. Even though talking with someone in person may be the most effective in some situations, some people may feel more comfortable starting with an email or written request. Starting with written communication can help the individual build confidence before handling similar situations in person.

Offer choices and help solve problems

Some people have difficulty advocating for themselves because they may not know what other options are available or what they are allowed to request. Give the individual choices and help them think through different solutions.

Let the individual speak for themselves

Give the individual the opportunity to speak for themselves. This is especially important to practice during the teenage years and young adulthood. Role-playing can be helpful. The individual can also write down what they want to say ahead of time. When possible, let the individual keep trying instead of stepping in and taking over if their first attempt does not go perfectly.

Encourage persistence

Self-advocacy does not always mean getting exactly what someone requests. If the request was not granted, it does not mean that asking was wrong or that self-advocacy does not work. Encourage the individual to keep trying and not be afraid of making mistakes. Some people and situations may be more willing to provide accommodations than others. However, making the request and starting the conversation can help the individual become more confident. It can also help others better understand their needs.

Individuals with autism spectrum disorder (ASD) have high rates of co-occurring mental health disorders. Although people may seek treatment for a specific concern, the issue that brings someone to therapy is often only the “what” rather than the “why.”

For example, a therapist may begin with the following description: John is a 20-year-old with ASD, anxiety, and depression. While this information is important, it is only the starting point for treatment. A case conceptualization helps the therapist understand the factors underlying the concerns that bring someone to treatment.

For example:

• Why does John have difficulty making friends?
• Why does he lose his temper so easily?
• Why does he avoid leaving his room?
• Why does he seem sad much of the time?

Understanding these questions can help the therapist determine where to begin treatment and which concerns may be connected.

The concerns that bring someone to therapy can be thought of as ingredients, and a case conceptualization is the recipe. It provides a framework for understanding why a person is experiencing particular difficulties and how those difficulties may be related. This framework can help therapists make decisions about treatment. For example:

• Which concern is most important to the individual?
• Which concern has the greatest impact on the individual’s quality of life?
• Should multiple concerns be addressed at the same time, or one at a time?
• If treatment begins with one concern, is there a particular order that makes sense?

A good case conceptualization helps answer these questions and provides a roadmap for treatment.

A case conceptualization is an ongoing process rather than a one-time task. The following steps can guide its development:

• Collect information from multiple sources. Gather information through clinical interviews, self- and other-report questionnaires, self-monitoring data (such as daily behavior or mood tracking), and reports from family members and other treatment providers.
• Identify current concerns and their triggers. Develop a comprehensive list of the individual’s presenting problems and identify situations, events, or other factors that may trigger or contribute to those problems.
• Develop working hypotheses. Use a specific theoretical framework, such as functional-behavioral or cognitive-behavioral theory, to develop hypotheses about why the concerns are occurring. Then personalize these hypotheses based on the individual’s experiences and circumstances.
• Begin interventions based on the hypotheses. Use the case conceptualization to guide treatment and determine appropriate interventions.
• Monitor progress. Evaluate whether the individual is responding to treatment as expected and whether the changes observed support the original hypotheses.
• Revise the hypotheses as needed. Update the case conceptualization when new information emerges or when treatment outcomes differ from what was expected.

Case conceptualizations can be written as a brief narrative, often in one or two paragraphs, or represented visually in a chart or other format.

Regardless of the format, the process should remain collaborative and person-centered. The individual’s perspective should help guide the process, including what they consider important and how they understand the relationships among different concerns.

Sharing a case conceptualization with the individual can also be a powerful therapeutic tool. The conceptualization can be adapted to meet the person’s level of understanding and can be used with individuals across levels of ASD and intellectual impairment.

Being a therapist involves taking a scientific approach to treatment. Therapists develop hypotheses, use those hypotheses to guide interventions, monitor outcomes, and revise their understanding based on what they observe.

When therapists feel unsure about what to do next, or when they feel as though they are simply responding to symptoms or the newest crisis, it may be time to revisit the case conceptualization.

A strong case conceptualization should remain flexible. As new information becomes available and the individual responds to treatment, the conceptualization may need to change. Revisiting it helps ensure that treatment continues to be guided by an individualized understanding of the person and their needs.

Presenting Problem

Presenting problem: irritability and verbal aggression in 20-year-old male with ASD
Data from multiple sources: moderate ASD, moderate irritability, severe social anxiety and depression, low motivation, low community participation in important activities

Specific Issues

Problem list includes: moderate ASD, anger, social anxiety, depression, increased daytime sleeping, no same-age friendships/romantic relationships
Triggers: drastic decrease in community involvement following high school graduation, loss of BHRS services, closest friend recently moved out of state, recent family stressors

Hypotheses and Interventions

• Recent stressors within family and significant issues within family dynamics leading to increased isolation in bedroom.
  Family therapy, referral for caregivers for individual therapy to target mental health issues
  Monitor irritability and family stressors; expect it to decrease with increased social activity outside of the home

• Frustration intolerance related to ending a preferred activities and low motivation.
  Individual therapy with exposures for frustration tolerance, behavioral therapy
  for parents
  Monitor irritability and family stressors; expect it to decrease with increased social activity outside of the home

• Escape behavior in response to social situations where he perceives others as being critical and rejecting.Individual therapy with exposures to social situations, Cognitive restructuring
  Monitor anxiety; expect it to increase with increase social activity and introduce exposures as needed

• Belief that he is incompetent and a failure following high school graduation leading to decreased interest in social interactions.Individual therapy with behavioral activation targeting important community activities, Cognitive restructuringIncrease community engagement in self-reported important activities to improve motivation and mood
  Monitor anxiety; expect it to increase with increase social activity and introduce exposures as neededMonitor irritability and family stressors; expect it to decrease with increased social activity outside of the home

It’s been said that “a picture is worth a thousand words.” Data is easier to interpret when put into a visual form where multiple data points can be summarized, and relationships and trends can be easily determined. When designing a visualization strategy, remember that the goal is to make the message more apparent.

In general, “less is more” for data visualizations, as it makes them easier to understand and interpret. Including too many variables on one graph can make things complicated and difficult to understand. The aim is to include as much information as you can, while keeping the design as simple as possible.

• Bar graphs are easiest for most people to interpret.
• Line graphs are helpful for showing changes over time.
• Make sure the visualizations are well labeled so people can understand what is being represented. This includes units of measurement.
• Determine the appropriate amount of data to visualize. Including too much data may create a lot of “noise,” which may make it difficult to recognize/understand small changes that occurred during that time. However, larger data sets can be helpful in some situations, such as showing larger trends over time.
• Well-designed data visualizations should “speak for themselves.” If you are finding that you need to explain your graphs, you may need to put more effort into how you set up and label the visualization.