Rosemary Kirstein wrote: My dear friend Libbey Walker is a doctoral student at Antioch U., and she needs data!
She's looking for autistic adults to fill out an anonymous online survey about autistic mental health and how you relate to descriptions of autism. Interested? Want to help?
(If Google Docs asks you to sign in, just ignore that!)
Debbie Ann wrote:Let me explain it this way. Ms. Walker is asking how an autistic adult feels about being described as autistic. That's not a question they want to be asked, ever.
What if you were asked to answer a questionnaire that asked.... “how do you feel about being called ugly?” …. She needs to find a different approach.
Here is one description of autism:
Autism spectrum disorder (ASD) is a neurodevelopmental disorder. To be diagnosed with ASD, individuals must show A: Deficits in social communication and interaction as well as B: Restricted, repetitive patterns of behavior, interests, or activities.
A. Deficits in social communication and interaction include:
a. Deficits in social-emotional reciprocity ranging from abnormal social approach and failure of normal back-and-forth conversation to reduced sharing of interests or emotions, to failure to take part in social interactions.
b. Deficits in nonverbal communication behaviors used for social interaction ranging from poorly integrated verbal and nonverbal communication, to abnormalities in eye contact and body language or deficits in understanding and use of gestures, to total lack of facial expressions and nonverbal communication.
c. Deficits in developing, maintaining, and understanding relationships, ranging from difficulties adjusting behavior to suit various social contexts, to difficulties in sharing imaginative play or in making friends, to a lack of interest in peers.
B. Restricted, repetitive patterns of behavior, interests, or activities include:
a. Repetitive motor movements, use of objects (such as lining up toys or flipping objects), and speech (such as echolalia or repeating phrases).
b. Insistence on sameness, inflexible following of routines, or ritualized patterns of behavior, such as extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day.
c. Highly restricted, fixated interests that are abnormal in intensity or focus, such as a strong attachment to or preoccupation with unusual objects and excessively limited or single-minded interests.
d. Hyper or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment, such as apparent indifference to pain/temperature, negative response to specific sounds or textures, excessive touching or smelling of objects, and visual fascination with lights or movement.
Here is another description of autism:
Autism is a neurodevelopmental disability that affects how we think, communicate, and interact with the world. Autism is a normal part of life. There is no one way to be autistic. Every autistic person experiences autism differently, but there are some things that many of us have in common.
1. We think differently. We may have very strong interests in things other people don’t understand or seem to care about. We might be great problem-solvers, or pay close attention to detail. It might take us longer to think about things. We might have trouble with executive functioning, like figuring out how to start and finish a task, moving on to a new task, or making decisions.
Routines are important for many autistic people. It can be hard for us to deal with surprises or unexpected changes. When we get overwhelmed, we might not be able to process our thoughts, feelings, and surroundings, which can make us lose control of our body.
2. We process our senses differently. We might be extra sensitive to things like bright lights or loud sounds. We might have trouble understanding what we hear or what our senses tell us. We might not notice if we are in pain or hungry. We might do the same movement over and over again. This is called “stimming,” and it helps us regulate our senses. For example, we might rock back and forth, play with our hands, or hum.
3. We move differently. We might have trouble with fine motor skills or coordination. It can feel like our minds and bodies are disconnected. It can be hard for us to start or stop moving. Speech can be extra hard because it requires a lot of coordination. We might not be able to control how loud our voices are, or we might not be able to speak at all–even though we can understand what other people say.
4. We communicate differently. We might talk using echolalia (repeating things we have heard before), or by scripting out what we want to say. Some autistic people use Augmentative and Alternative Communication (AAC) to communicate. For example, we may communicate by typing on a computer, spelling on a letter board, or pointing to pictures on an iPad. Some people may also communicate with behavior or the way we act. Not every autistic person can talk, but we all have important things to say.
5. We socialize differently. Some of us might not understand or follow social rules that non-autistic people made up. We might be more direct than other people. Eye contact might make us uncomfortable. We might have a hard time controlling our body language or facial expressions, which can confuse non-autistic people or make it hard to socialize.
Some of us might not be able to guess how people feel. This doesn’t mean we don’t care how people feel! We just need people to tell us how they feel so we don’t have to guess. Some autistic people are extra sensitive to other people’s feelings.
6. We might need help with daily living. It can take a lot of energy to live in a society built for non-autistic people. We may not have the energy to do some things in our daily lives. Or, parts of being autistic can make doing those things too hard. We may need help with things like cooking, doing our jobs, or going out. We might be able to do things on our own sometimes, but need help other times. We might need to take more breaks so we can recover our energy.