Working Together

Module 2. Introduction

- Hi, my name is Fiona. In this module you will learn about different experiences of autism. We have organized this module into 5 areas that are important to autism research partnerships: communication, sensory and motor experiences, interests, thinking patterns and some of our experiences with emotions. We’ve added optional resources for you to learn more. Click on each lesson to get started.

Module 2: Autism awareness

• Lesson 1: Autism awareness
• Lesson 2: Communication
• Lesson 3: Interests
• Lesson 4: Sensory and motor
• Lesson 5: Thinking patterns
• Lesson 6: Emotional expression
• Something to think about

Lesson 1: Autism awareness

This module uses the first-person voice (“we, us, our”) because it was created by autistic people. The information presented is only an overview of how autism is experienced by different people. Autism features occur on a spectrum. Each person is different. We have complex lives. It is important to take time to get to know us.

Features of autism

In this training, we focus on features of autism that may be important to research partnerships. These features can be grouped into five (5) general areas: communication, interests, sensory and motor, thinking patterns, emotional expression. Every autistic person experiences these features differently. Think about it as a unique balance of different features.

Autism and co-occurring conditions

Multiple areas of health challenges can complicate our lives, including other conditions like attention deficit hyperactivity disorder (ADHD); mental health conditions like anxiety disorder and complex post-traumatic syndrome (CPTSD); allergies and immune conditions; brain and nervous system issues like migraines; digestion and gastrointestinal conditions; sleep disorders, and muscle and joint pain.

Autistic strengths that benefit the research process: pattern recognition, passion for diving deeper; noticing things that others don’t, unique perspectives, seeing the big picture as well as the details, curiosity informed by our life experiences.

Lesson 2: Communication

We use a variety of ways to communicate. Some people talk in short sentences; others use many words. Some of us use Alternative Augmentative Communication or AAC. Examples of AAC include signs, picture boards, spelling boards, computers, or speech devices.

Understanding

Many of us like direct and precise language. We may be unable to speak when we are overwhelmed. We may understand everything but not be able to show it.

Masking

Masking is when we work really hard at hiding our autism. Masking takes a lot of energy. Some of us are not able to mask. Being accepted for who we are is important for our mental health.

Influence

Some minimally speaking people get physical support or prompts from another person. Examples: Facilitated Communication (FC), Rapid Prompting Method (RPM), Spelling to Communicate (S2C). There is evidence that the supporter may influence what the person types.

Ways of including someone who gets physical communication supports

Provide other ways to confirm, agree, or protest: speech, typing on their own, gestures, AAC.

Research partners should receive support to communicate on their own. This video shows Facilitated Communication. This training is not endorsing Facilitated Communication.

- [Narrator] Including someone who gets physical communication supports.
- [Device] Independent.
- Independent.
- [Interviewer] Yeah, and for recording, was that yes or no?
- Yes.
- [Interviewer] Okay, and- Turn your volume up.
- [Device] Yes.
- [Interviewer] You were telling me that verbal is not always reliable, but and you are saying that when it's, like, repeated, like-
- [Support person] Yes, if you ask him the same question multiple times and you get the same answer twice, then it's verbally reliable.
- [Interviewer] Okay.
- [Support person] To just ask him once, he might be repeating what you said the last time.
- [Interviewer] Okay.
- [Support person] Or that he's saying something else instead, but when you get that same answer more than once, then that tends to be very reliable.
- [Interviewer] Okay, so Thad, the other thing I wanna ask you is, because we did that interview and I created the video and I want you to look at it again, and then tell me with your voice or with your independent typing if you agree that this is really what is your experience, okay? Let's watch it, and then you tell me if you're good with that, if it's really what you want. Thank you so much for joining me and being willing to answer some questions about your experience of being on the autism spectrum. So, my first question is, how old were you when you were diagnosed with autism?
- [Device] It was just before my fourth birthday.
- [Interviewer] How did you communicate with your…
- [Narrator] Provide other ways to confirm, agree, or protest, like speech, typing on their own, gestures, or AAC.
- [Interviewer] Okay, so is that okay? Is that really what you wanted to say? You have to tell me by yourself, because I wanna know, like, if you're good with what you said, so you can just say yes or no, and if it's no, then you tell me more about it. Is that yes?
- Yes.
- [Interviewer] Okay.
- Yes.
- [Interviewer] Can I hear it with your sound there?
- [Device] Yes.
- [Narrator] Research partners should receive support to communicate on their own. This video shows facilitated communication. We are not endorsing facilitated communication.

Our experience with communication

People assume we’re not intelligent or we’re incapable of learning based on how we communicate. We often change the way we communicate to be more in-sync with others. People don’t show tolerance for things they don’t understand.

- [Narrator] Using alternative augmentative communication, AAC.
- [Device] When I was younger, it was even more challenging than now, as I could not talk very much. It was one or two words at most. I sometimes used pictures until I learned facilitated communication in the first grade that I could start to express myself. Then in middle school, my SLP helped me to become more verbal. It was possible for me to speak some basic sentences and could read books out loud with a clear voice.
- [Narrator] Authenticity.
- [Person 1] I want to just be able to have my autistic way of like speaking and moving and doing everything that's just easier and more comfortable. And if I have to try and like really monitor myself and really like try to control exactly the way I'm speaking, and it's like, I'm not even really capable of that to like, I can pull it off for maybe a couple minutes, but like people, it's like they just think, that based on the way that I'm talking, that I'm not actually that perceptive or that I like don't know what's going on or don't know how to interact.
- [Narrator] Translation and masking.
- [Person 2] I have certain levels of translation of my communication that I'm mostly doing, whether it's verbal or nonverbal, to be more in sync with other people or be able to meet people where they're at or that kind of thing. People assume that there's one real self or something, and I don't think it's as simple as that.
- [Narrator] Being misunderstood by non-autistics.
- [Person 3] And to me it's like, you know, with the children, you know, I'm easier to connect with than an adult because adult may think that, you know, and sometimes they call me a freak. I been called that many times. It doesn't hurt my, it doesn't hurt me sooner. It does not hurt me, literally, because I dealt with that.
- [Interviewer] You've grown a thick skin maybe, right?
- [Person 3] Not just a thick skin, but thick and protective skin. But I don't use that as, you know, they're trying just purposely trying to get under my skin or trying to be mean to me. It's just they don't understand.
- [Narrator] Asking for clarification.
- [Person 4] Sometimes I have challenges because I don't always get the support and the direction I need at work to understand the aspects of work. But I do pretty well of asking for clarification. I ask like, what needs to be done next? Like I try to interact as much as I can to understand what to do at work.

Lesson 3: Interests

Some of us are very passionate (and smart!) about specific topics. This is how we like to spend our time and connect with others: accessibility, technology, autism, languages, advocacy, sports.

- [Narrator] A passion for accessibility,
- [Person 1] So you understand the individual needs of the person. That's priority number one in my, you know, my work, because their access needs, it's essential to their daily lives. No if, and, or but. I wanna make sure that the information we give you, the resources we give you, the technology, the advancement, et cetera, that we give you, that it works for you and you alone, nobody else.
- [Narrator] A passion for technology.
- [Person 2] My biggest sort of like, I'll call it semi-hobby interest now is electronics. And so I think that's an interest that I'm gonna pursue more in various ways that I hope to sort of do some things related to technology and support for people with neurodevelopmental differences, and also just disabilities in general.
- [Narrator] A passion for autism and languages.
- [Person 3] Someday, at some point, in some way, write a book about autism. I mean, I'm an anthropology major, It just kind of feels like I'm constantly doing autoethnography of autism. It's kind of interesting to be able to look at it and just be able to see like what autism is for me personally. Another thing I would like to do is become fluent in Scottish Gaelic because I'm learning that right now.
- [Narrator] A passion for advocacy.
- [Person 4] I'm very interested in self-advocacy and helping others learn how to advocate for themselves.
- [Narrator] A passion for sports.
- [Device, person 5] It is great to do activities with others such as sports, like basketball and bowling. It is wonderful to ride horses at adaptive riding programs and go swimming at summer camps. It is great to make friends, watch football, and hockey.

Lesson 4: Sensory and motor differences

Our brains may struggle to process some sensory information. Too much input through the senses can be overwhelming. Our bodies may not move when and how we want to move. Spontaneous, unwanted actions or words may get in the way and be misinterpreted. Some examples include echolalia, hand flapping.

Some of our sensory and motor experiences: saying words we don't want to say; flapping our arms or hitting our ears when overstimulated or stressed; having to avoid environments that are overstimulating, wanting people to recognize and respect our limitations and needs.

- [Narrator] Echolalia.
- [Device, person 1] Some sounds echo in my head and are very loud so that you constantly try drowning out those sounds with other words. Sometimes words get stuck in my head, I call them words of annoyance, but technically the term is echolalia. When this happens, I say the words out loud and end up sounding foolish.
- [Narrator] Stimming.
- [Device, person 1] It sometimes causes me to do an activity called flapping where I flap my arms up and down or hit my ears at times, especially when I am overstimulated or am stressed.
- [Narrator] Overstimulation.
- [Person 2] People just don't really realize, how much is happening and how much it's affecting me in every waking moment of every day. Because, I'm really sensitive. I don't express it very much because, it's not like I can just go around complaining about everything all the time. Like now that I'm an adult, I can control a lot better how much I expose myself to on a daily basis and the kinds of environments that I'm in. But when I was a kid, I did not have very much control over that, and so I would just get so overstimulated, so quickly.
- [Narrator] Adaptation.
- [Person 3] In preparation for a surgical procedure. A couple years ago during the height of COVID, I put myself on lockdown before, the month before the procedure and I found that a lot of my chronic pain went away, and I realized that forcing myself to go out into the world was actually increasing my chronic pain. And so, my adaptation unfortunately, is I've, I've become agoraphobic. It's made me recognize that I have legitimate limitations and I need to honor those limitations, and if I don't, my functioning gets worse.

Lesson 5: Thinking patterns

It can be difficult to describe differences in thinking. It can be complex to understand. Each brain works differently. Some of us can be really good at understanding details and how things are connected. It can be hard for us to understand social situations.

Information processing

It may be hard to remember everything, and the order things should be done. It may be hard to change between topics or tasks. Too much information can be overwhelming.

Getting things done

It can be difficult to start or complete a task. Pressure or anxiety make it even worse. Some of us need complex tasks and information broken down to process them. Others may need to have all the information and details before starting a task.

How we think, process information, and understand the world: having a spectrum of skills and knowledge; seeing details but also the big picture; thinking in terms of systems; experiencing increased awareness; being overwhelmed when getting started with a task.

- [Narrator] Spectrum of knowledge.
- [Person1] Social communications and processing visual information are both really, really hard for me. And I may understand very complicated things, I can see patterns very easily, I can see the big picture and the small picture at the same time, which is something that not a lot of people can do. But the things that I'm good at, I'm really, really good at, and the things that I'm bad at, oh, do I really suck at.
- [Narrator] Systems thinking.
- [Person 2] I tend to be a fairly analytical person. I tend to kind of look at things in a very systems-oriented lens. So I'm both a big-picture and small-picture person in that way. I have to learn by really seeing how things integrate with my overall knowledge of reality and the world, and make it make sense while I'm learning it.
- [Narrator] Heightened awareness.
- [Person 3] I think things differently, do things differently. I have different skill sets differently. But it makes me more aware of my surroundings and it makes me more aware of what I'm doing, but also makes me have more insight.
- [Narrator] Executive skills.
- [Person 4] It's like, because the way that my executive dysfunction works, it's not that I don't know that I'm supposed to do something and it's not even, sometimes I forget, but it's not even necessarily that I've forgotten, it's just that initiating things and then not knowing exactly how it's gonna go or how I'm going to approach it is so overwhelming that I just don't start. So it's like, "I know I need to do this, but I'm overwhelmed by the prospect of doing it and therefore I'm delaying it until I feel more regulated and I'm able to just do this."

Lesson 6: Emotional expression

We can express emotions differently. Our faces may not match our thoughts. Pay more attention to the words we say than our facial expressions or actions. We are happiest when we feel loved and supported and we can do the things we enjoy.

We may have trauma from bullying or failures due to not being supported. Some of us can act out when overwhelmed or upset even though we don’t want to. Acting out may look like yelling, screaming, or hitting. Sometimes, we have had bad experiences with research. Building trust takes time.

Some of our experiences related to emotions

• Emotional awareness: “there is more coming in then there is going out.”
• Expressing feelings can be difficult.
• Being more aware of people’s feelings.
• Wanting to be part of the community, respected, and valued.

- [Narrator] Emotional awareness.
- [Person 1] There's a lot more coming in than there is going out, and that's something I think is pretty universal across all autistic people. Just because someone's not speaking or being super expressive to you, and really engaging with you, it doesn't mean that they're not aware or that they don't understand what's happening.
- [Narrator] Expressing feelings.
- [Device, person 2] Autism makes it difficult to express my thoughts and needs such as when things are frustrating and I need to convey my feelings, such as being angry or when someone says something hurtful. It is easier to show love by hugging someone than I love or trying to help them, especially my mom or other family members.
- [Narrator] Empathy.
- [Person 3] Being autistic, it makes me be more aware of people's feelings too as well, and I can feel that. For me, it's trying to understand the gifts that I have, the empowerments that I have, and also the insight that I have. How can I best utilize them?
- [Narrator] Being valued in the community.
- [Person 4] Just because I'm on the autism spectrum and I have a disability, it does not mean I don't have ideas, I don't have thoughts, I don't have the ability to make my own decisions and figure things out. I like to be part of a community and do things just like anyone else would in the community.
- [Person 5] I would just like to see a world where, like Data on "Star Trek," the entire community there understands that he is not a typical quote unquote human being. He is an Android. I'm not saying that autistic people are androids, but his lack of social ability definitely highlights part of the autistic experience. But what's interesting is that on "Star Trek," everyone understands this and tries to help him understand and bring him along, whereas out in the real world, you never know what you're gonna get.

Summary

Autism is a spectrum condition. It affects different people in different ways.

We all have different accessibility needs. Those needs may change based on the task and the environment. Our needs are not related to how we look or how we communicate.

Having strength in one area does not mean also having strengths in other areas.

Accommodations and supports should be individualized.

Something to think about

What features of autism would you like to learn more about? (check all that apply)

• Communication
• Interests
• Sensory and motor
• Thinking patterns
• Emotional expression
• Co-occurring conditions

You are done with module two. Click on next to continue to the activity and click on next module to access the following video.