Anonymous survey for autistic adults

An author I follow posted this on facebook:

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?
https://www.facebook.com/thinkingpersonsguidetoautism/posts/6750318818342721
(If Google Docs asks you to sign in, just ignore that!)

It never asks for your email address. It is open to both formally- and self- diagnosed Autistics/Aspies (those with Autism or Aspergers). You can open in private browser if you don't want it tied to your google account.

Here's the link to the study: Research Study: Personal Wellbeing Among Autistic Adults

Dear Nicole,
My honest suggestion would be for Ms. Walker to find some other way to approach this subject or ask this question in a much different way.

I have been renting out rooms in my home for 11 years now and I have had 6 tenants/people/roommates that I am sure were autistic. It was very obvious to me.

They each work so very hard at holding down a job and acting like an adult and fitting in that I think it is often exhausting for them. I don't think any of them wants anyone to know that they are handicapped in any way. So I would never have come out and asked them if they were autistic. I think each of them would have been absolutely heartbroken if they ever thought that I suspected such a thing. They struggle so hard to be 'normal' and want so much to be accepted. And when you spend time getting to really know them they can often tell you stories of being bullied or swindled that will make you cry. And they are usually the sweetest, kindest and most wonderful people.

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.

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.

Looking at the Permaculture and Autism, Autism Spectrum Disorder (ASD), and Asperger's, The Importance of Neurodiversity in Permaculture, and Aspies (and non aspies!) what are your "intensely focused interests"?, I see a lot of people who are quite happy/comfortable with being autistic/having autism/having aspergers.

Now, neither my husband nor myself have been formally diagnosed, but a lot of the autism/aspergers traits fit us quite well. I personally don't go around telling most people that I'm probably an aspie. I don't want people to look at me and think, "Oh, you're weird (in a bad way)." I like to let my weirdness show in increments to those I feel will be receptive to said weirdness. I like who I am. I struggle with certain things, and I don't like how prone I am to getting overwhelmed, and I work hard to prevent the not-useful aspects of who I am.

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.

I don't see being autistic as being any different than someone, say, being an ENTJ on the Myers-Brigg personality quiz, or being a verbal learner, or being extroverted. It's part of who they are and comes with both strengths and weaknesses that make them unique.

I cannot speak for the people you know, but I have heard that a lot of autistic people go through a LOT of trauma in childhood related to not being understood, or being told that their coping mechanisms and interests are wrong (such as being disciplined for fiddling with their necklace or hair when stressed, or covering their ears when things are too loud. Those actions help them calm themselves, but they are told those things are wrong. They are told most of everything they do is wrong).

Personally, the people I am usually the most comfortable interacting with are those that are also on the spectrum. I'm able to be myself without judgement or people thinking I'm inferior because of my loud voice, or my large hand gestures, or how I didn't quite read the undertones in a conversation, or because I got overwhelmed from juggling too much mentally/emotionally. It could be that autistic people around you don't talk about their autism because they fear judgement, or because they have been harmed by derogatory treatment and diagnostic terms.

In the survey, it actually asks the person how much they identify these two descriptions of Autism:

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.

One description is broader and more positive. The other frames autism in a very, narrow negative way. I honestly hope a lot of people contribute to the study. I think the questions it asks are very important, especially ones like this: "On a scale of 0 to 10, how much have you personally accepted yourself as an autistic person?" I like that the questionnaire is anonymous, and you can take it without anyone knowing your autistic, and they never even ask for your email address.