Ep34 Lived Experience and Self-Advocacy with Michau van Speyk (Ethics)

When creating goals, targets, programs, addition/removal of accommodations, are we genuinely listening to the needs and preferences of autistic individuals? Or do we find ourselves more likely to adhere to data and mastery criterion to direct our behaviors? As practitioners, we may mean well, but it is in our best interest to set aside our pride and take some time to listen to the voices of those who have personally experienced what we claim to understand.

In this chat, we meet with Michau, autistic self-advocate, to discuss his experiences growing up Canada. He provides his perspective on what he found supportive, unhelpful, or painful/traumatic, and how and when he finally felt his voice being heard. He’ll also discuss his work in self-advocacy, long and short-term goals, and how others can do better for the autistic community.

Learning Objectives:

1. Recognize the importance of co-production for treatment, accommodations, and interventions not just with other professionals and practitioners, but with autistic individuals themselves.

2. Describe how to incorporate the individual’s voice, preferences, values when establishing programs and goals.

3. Identify multiple potential variables that can affect placement, treatment, and social and learning opportunities for individuals.

Take Aways- your bite-sized educational noms:

- Individuals who receive therapies are often bombarded with a variety of competing stimuli and contingencies. Goals for this, programs for that, being pulled out of class here, attending an appointment there. It’s… a lot, to put it mildly. And too often the individual in the middle of it all, the one actually experiencing the things put in place, is overlooked; their voice, opinions, values, needs are left overlooked. Instructors, teachers, professionals need to be aware of the overlapping contingencies and requests that are being placed upon the individual and take those into consideration when creating programs, setting goals, and mastery criterion.

- And speaking of mastery- As a professional, the inclination may be to only gauge mastery based on numbers and education- 80% mastery across three settings/persons for example- but what about the learner’s interpretation of “a mastered skill?” How often do we check in and ask, “you got this? What else do you need help with? What would help? What isn’t helping?” The individual is the one most aware of their needs and it’s a disservice to disregard their voice.

- There are multiple variables that can affect placement including but not limited to the goals of the administration/governing body, teachers, individual therapies, family culture, and community culture. Let’s just take a moment to look over schools and placement- the learner is often pulled out of class, assessments run, data analysed based off brief periods of interaction, and then decisions made. BUT Are we building enough rapport to get an accurate understanding of the learner we’re working with during assessment? Are we hearing what they perceive as their needs and goals? It takes time to build rapport, build trust and skills for people who don’t feel like they often fit into “normal”. Check biases and preconceived notions and let the learner lead.

Worth 1 Learning, 1 Ethics CEU

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