Communication, Interaction, and Autism Acceptance
If you've read enough of my writings, you know that I am an activist for the rights of all people - especially Autistic people - to communicate using whatever method it works for each individual. Communication and Autism Acceptance Everybody communicates. Communication doesn't need spoken words. Communication doesn't need words at all. Behavior is communication. Smiles, looks, our bodies - those are used for communication and they are as valid as any word. I can type, and I like to type. Even if typing is exhausting, I still use this method to speak out. Interaction and Autism Acceptance But I
Autism Awareness Month Awareness
Beware of Autism Awareness Month by Amy Sequenzia. "Autism Awareness Month" Awareness I am writing this in March because I want everyone to start getting ready for April, which was declared by non-Autistics to be "Autism Awareness Month". I am declaring March: “Autism Awareness Month” Awareness Month. To make it less confusing, let's call March: The Month to Beware of Autism Awareness Month. Why am I doing this? April's Autism Awareness Month Because Autism Awareness Month is the month when all those so-called autism advocacy organizations double, triple down on using our neurology to raise money by advertising how terrible it is
Intelligence Is an Ableist Concept
Intelligence Is an Ableist Concept, by Amy Sequenzia. Warning: use of the R-word. Am I “Intelligent”? Too many times I see the word "intelligence" in articles that are supposedly about disability rights. The word comes up to explain that being disabled does not mean that there is a "problem" with the brain. Many times this happens when a physically disabled person, or someone talking about physical disabilities, want to point out that “their minds are fine”. The word is also used to tell stories of non-speaking Autistics who learned to type to communicate and "proved" that they are "intelligent".
Living My Disabled Life: My Story Is Mine to Tell Part 3
How I Tell My Story by Amy Sequenzia. Living my disabled life: My Story Is Mine to Tell Part 3. (Part 1 Autism: My Story Is Mine to Tell and Part 2 Love, Respect and “Autism Parents” ) By living my life. Unapologetically. Fiercely. With pride. I am me. I am disabled and I am a perfect being, despite the bias and oppression imposed on me. I am a perfect being despite my human flaws. My story is mine. The life I live is the one I have. I like my life. I don’t like what non-disabled people believe my life to
Love, Respect and “Autism Parents”: My Story Is Mine to Tell Part 2
Love, Respect and "Autism Parents" : My Story is Mine to Tell - Part 2 by Amy Sequenzia. This is the second post on how Autistic voices are dismissed and erased when the world talks about autism, and about what being Autistic means. The first post was about how the "experts", the media, and so-called advocacy organizations tell our stories. This post is about how parents tell our stories. It is a little more complex, because while it is true that parents usually know their children better than other people, and while we all hope that every parent loves their
Autism: My Story Is Mine to Tell
My Story is Mine to Tell by Amy Sequenzia. Everywhere - on the web, in conferences, in books, on TV and on the radio, in college lecture halls - people are talking about autism. Too many of these voices are non-autistic voices. Too many of these voices don't really know what autism is. Too many of these voices are simply telling old stories - full of assumptions - that non-Autistics voices have told before. Too many of these voices are actively silencing and ignoring Autistic voices, while being hostile to us when we tell them they are wrong. They tell
Proudly Autistic by Amy Sequenzia
by Amy Sequenzia Being Proudly Autistic Being proudly Autistic. Being proudly Disabled. Being me. Telling my story because my voice is my own. My story is mine to tell. I define myself. Since I was very young I have had an independent mind. Sometimes - no, many times - for a long time, I was silenced. I was told to comply. I was called names. To many, I didn't have dignity, I didn't deserve dignity. But I persevered. Perseverated. Persisted. Some people saw my humanity. To them, I let myself known. Without words. With smiles. An occasional hug. And
I Resist by Amy Sequenzia
by Amy Sequenzia. I RESIST My resistance is an act of defiance. I defy the assumptions of an unlivable life Of a tragic existence Of dreams that would never become true. The world said I wouldn't - I defied. The world said I couldn't - I defied. The world says that I won't, that I can't - I resist. I defied the expectations, and I kept existing. I defied assumptions, and I celebrate my existence. I resist the ones who insist on erasing my existence. I defy the ones who deny me respect. My existence is an act of
Mental Health Therapy and the Autistic Client: When Clinicians Don’t See the Autism (It’s All the Autism)
When Clinicians Attribute All Psychiatric Symptomatology to the Autism Autistic people find their way to therapy when symptoms of depression, anxiety, OCD and other diagnoses become problematic to them in their daily lives. When a client has been previously diagnosed with autism it is common for mental health clinicians to attribute all psychiatric symptomatology to the autism, which often results in autistics not being diagnosed or treated for comorbid mental illnesses when warranted. As clinicians we need to understand the autistic operating system – in other words, to see the autism – if we are to be helpful to
When Disabled Students Are Abused
This is the second in a series of posts about trauma due to criminalization of disabled students by Amy Sequenzia. Content Warning: ableist slurs, description of abuse. I write this post based on the case linked here, NC Boy With Autism Slapped: Former Teacher Gets Jailtime , and on similar cases that make the news when they happen but after that we don’t hear about the victims. I will tell what happened to me, how I reacted to the abuse, and the lasting trauma that might have gone unnoticed to many. The case in the link had a better ending than most.
Mental Health Therapy and the Autistic Client: When Clinicians Don’t See the Autism
A Series on Mental Health Therapy and the Autistic Client by Judy Endow, MSW When Clinicians Don’t See the Autism (Can’t See the Forest for the Trees) Today, autistic people, just like the population at large, find their way to therapy when symptoms of depression, anxiety, OCD and other diagnoses become problematic to them in their daily lives. As clinicians we need to understand the autistic operating system – in other words, to see the autism – if we are to be helpful to our autistic clients. When we do not have a strong grasp on this the results are
The Criminalization of Disabled Students
This is the first of a series of posts about trauma due to criminalization of disabled students by Amy Sequenzia. The Trauma Is Real Everyone has heard of the school-to-prison pipeline. It is the system that criminalizes students' minor infractions of school rules. It is the result of "zero tolerance" policies, of the presence of cops (School Resource Officers - SRO) in schools. It has become so extreme that a student kicking a trash can, due to frustration, can lead to a criminal record, detention in a juvenile facility and criminal charges instead of a school disciplinary action, like after
Mental Health Therapy and the Autistic Client: The Autistic Operating System, Part One
The Autistic Operating System, Part One Mental health diagnosis and treatment has evolved over time according to what makes sense and what works for most people. We have an increasing body of research around mental health issues that informs us today. However, when it comes to autistic people we do not have a body of research that informs us about diagnosis and treatment of mental health disorders. Autistic people are not like most people. This means we need to understand the underlying autism neurology along with its impacts in the realm of diagnosing and treating mental health disorders
Mental Health Therapy and the Autistic Client
By Judy Endow , MSW Mental Health Therapy and the Autistic Client: Establishing Context Background Information: The autism neurology gets hit with elements of confusion, chaos and change as a person goes through their day. How this happens is different for each individual on the spectrum. For example, Brady’s neurology startles to a touch on the arm, DeShawn’s neurology reacts adversely when it perceives a surprise change in the therapy room such as new curtains and Aysia’s neurology delivers a punch when her therapy routine was altered by Grandma bringing her rather than mom. Each of these individuals was abruptly
Autistic, Non-Speaking, and “Intelligent”
Autistic, Non-Speaking, and "Intelligent" by Amy Sequenzia "Being Autistic is not the same as being intellectually disabled". "Non-speaking Autistics are intelligent". "When non-speaking Autistics learn how to type they can ‘prove’ their intelligence'". All the statements above are true. They are also incomplete. Statements like these are assumptions that do not help in making the world more respectful of all disabled people. They are incomplete because some non-speaking Autistics might also be intellectually disabled; Because some Autistic people might be Autistic AND intellectually disabled; Because while some typists are able to show that the assumptions about their IQ were
The Advantage of Autistic Difference in Visual Perception
Autistic writer, artist and consultant, Judy Endow on autistic difference in visual perception. As a child, people sometimes thought I was stubborn and resistant when I did not want to allow them into my space or to do what they wanted me to do. They did not understand the negative effect they had on me and on my surroundings, and at the time, I did not have the words to explain it. Sensory Information and Perceptions Today I have the words and can explain. I do so in hopes that it might help others who may not yet have their
Eye Contact and Autistic Dissociation: One Example
Autistic writer, artist and consultant, Judy Endow on eye contact and autistic dissociation. Autistic Dissociation “Dissociation is the ability to cut off from what is happening around you or to you. In its simplest form it is daydreaming. It is a skill all children have and which children with autism tend to overdevelop in managing a world they find overwhelming for a whole range of reasons.” Donna Williams (Donna Williams at http://www.donnawilliams.net/333.0.htm) Overwhelming Eye Contact and Autistic Dissociation I can remember the overwhelming experience having eye contact with others sometimes had on me as a child. Too much bright,
Teaching Abstract Concepts to Literal Thinkers
Autistic consultant Judy Endow's strategies for teaching abstract concepts to literal thinkers. Teaching Abstract Concepts to Literal Thinkers During the holiday season people are sometimes rushed and frazzled due to the extra activities and expectations of the season. Thus, it is a particularly good time to talk about kindness. Many individuals with autism are literal and concrete thinkers, which can make teaching an abstract concept such as kindness a little tricky. Here are some ways to work with an autistic neurology when teaching the concept of kindness: Identify Acts of Kindness Even though kindness is an abstract concept we can
Autistic Neurology and Behavior
Judy Endow explains how understanding autistic neurology shifts our perceptions and enables us to support autistic students. "Besides being kind and being the right thing to do, it is far more expedient to support autistic neurology than it is to assume negative character and ill intentions about your student with autism when he is struggling." All people use behavior. Autistic people use behavior just like people who are not autistic. Basically, when a problem is encountered, people behave in a way so as to fix the problem. We all do this, whether we are autistic or lack autism!
Why the Disability Community Is Grieving
11-9 by Judy Endow Our grief is deep. 11-9 feels so much to our disability community like 9-11 to our society. Our grief is deep. We are not being overly dramatic. Yes, 9-11 saw significant loss of life. Living, breathing people – lots of them – died that day. The reason those of us in the disability community feel this sort of grief today is because our human worth is on the chopping block. We know today that many of our friends, neighbors, fellow citizens out there in the community at large have voted against our humanity. For some
Disability Policy: Clinton versus Trump
In a few weeks will have elected a new President of the United States. Many of us get our information from watching TV. The trouble with this is we only get the information the TV decides is news worthy. Unfortunately, most things concerning disability are not newsworthy. This means that rather than seeing a candidate’s disability policy on the evening news we are more likely to see a candidate’s latest purported scandal whether it is about deleted emails or admitted past sexual abuse. While these things can be informative, I think it is helpful to also understand where the two
Providing Sameness and Routine While Living in Unfamiliar Surroundings
Judy Endow's Strategies for Providing Sameness and Routine Many children with special needs thrive in an environment with a high degree of predictability, sameness and routine. In the aftermath of a natural disaster life is anything but what our kids need to succeed. Often entire families, neighborhoods or communities are in the flux of confusion, chaos and change and will be for quite some time to come. Putting sameness and routine back into your child’s life as quickly as possible will be helpful. How can you do that when you have no idea what life will hold for you and your
Quick Tips to Create a Visual Schedule
Judy Endow on the Importance of Continuing a Visual Schedule After a Natural Disaster Many children with special needs use a visual schedule to organize their day. A visual schedule shows which activities and the order in which the activities will happen. A visual schedule can map out a big chunk of time such as an entire morning, afternoon or even a whole day. A first/then visual schedule shows what will happen just now (first) and what will happen next (then). (Endow, 2011) If your child uses a visual schedule it is important that you continue using a visual schedule through the
Autistic Burnout and Aging
Judy Endow Examines the Interplay Between Autistic Burnout and Aging Last week I returned from a vacation that I had been dreaming of taking for several years. I had booked my vacation quite a long time ago. After booking it, my personal resources declined. Many autistics know this phenomenon as autistic burnout. I am beginning to understand that there is likely some interplay between autistic burnout and aging . In autistic burnout we come to the end of our resources that enable us to act as if we are not autistic in order to meet the demands of
Autism, Direct Instruction and Having Friends
Autism, Direct Instruction and Having Friends by Judy Endow Social Understanding and Communication Social understanding and communication are two areas impacted by autism neurology. The way this plays out is different from one autistic individual to the next. Typically, for autistics I have worked with, this means that they do not always pick up social information from the world around them through observation only as most people do. Instead, they sometimes need direct instruction concerning information their autistic neurology doesn’t allow them to automatically pick up and learn. I think it is important that those around autistics understand that not
Autism and Movement Fluidity in Thinking
Autism and Movement Fluidity in Thinking by Judy Endow Unreliable Fluidity in Thinking One of the hardest things about my autism is the unreliable fluidity of my own thinking. Sometimes my thoughts are fluid and sometimes they are not. When my thoughts are fluid I can easily think through task-oriented things such as making a meal, writing an article, or cleaning the house. I can make a mental (or written) list and follow it. I can think of a main idea and sub topics. I can gather supplies and start. When my thoughts are not fluid life is a bit different.
Autistic Consultant on Autism, Making Friends and The Hidden Curriculum
Autism, Making Friends and The Hidden Curriculum by Judy Endow It can be difficult for some autistic people to sort out what things are okay to say and what things are not okay to say in various social situations. This was true for a high school student I worked with during the past year. William very much enjoyed talking with others, but was asking questions and making comments that were not appreciated by teaching staff. Worse, these comments and questions were causing other students to avoid him rather than include him in social exchanges. Each time teaching staff explained to
The Gymnastics of Person First Language
by Amy Sequenzia This post is about Person First Language and autism. Another title for this post could be: "Disability Language, and "Gymnastics". Some might find part of it funny, but I am not kidding. I wrote about why I believe Person First Language (PFL) is ableist, and how individual choices should be respected - the "individual" being the disabled person. Person First Language and Autism Most independent-thinking Autistic adults prefer Identity First Language (IFL). Some use Person First Language and their choice should be respected. This post is directed to non-autistics, to the media, and to autism advocacy organizations
Realities of Being an Autistic Therapist
by Judy Endow Realities of Being an Autistic Therapist In my work as a clinician licensed in my state to provide mental health therapy, many parents of children diagnosed with autism tell me how much they appreciate the fact that I am not only a therapist, but also am autistic. They feel they have a hybrid of sorts – I am a clinician, an autistic and have parented both children with and without autism. In addition, I have been an autism consultant for several school districts over the years so also can appreciate the educational side of things when it
Universal Design and Disability Acceptance
by Amy Sequenzia Universal Design If you are reading this, you probably should know that inclusion of disabled students, with the supports they need, is beneficial to all students. Universal Design is a thing. It means one builds things, and creates products that are accessible to all. It can also be used in classrooms, making sure all students have access to the same education, accommodating individual needs in a flexible environment. The idea of Universal Design is not about kindness, or about compliance with the ADA. It is about common sense. When more people participate, everyone wins because human beings
Autism, Social Greetings and Rhetorical Questions
by Judy Endow Autism and Rhetorical Questions Autistic people may not automatically know how to respond to rhetorical social questions such as “How are you?” or automatically reciprocate in social pleasantries such as “good morning.” This is not because they are rude, obnoxious, don’t care, or any of the other assumed reasons people attribute to this behavior. Instead, it is because all social information is not automatically picked up and used by a person with an autistic brain. The autistic brain simply works differently. Even so, autistic people can learn those things their particular brain hasn’t allowed them to automatically
Disability, Safety, and Value
Disability, Safety, and Value by Amy Sequenzia This post will mention the attitude of some parents. This post is not about love or wanting the best for a child. It is about being conscious that ableism exists, and that you might be, even if unwillingly, contributing to the systemic ableism in our society (I urge you to read the links. Click on the highlighted words throughout the post). I am a very disabled non-speaking Autistic woman. I need many supports. Many of you already know that. Some of you also know that the supports I needed throughout my life weren't
Teaching One Autistic Student to Ask For Help
Teaching One Autistic Student to Ask For Help by Judy Endow During the past school year I worked with a third grader diagnosed with autism as he returned to school after being discharged from a treatment center. Jake displayed many behaviors that did not work well in the classroom. These behaviors occurred predominantly during math class. Jake’s scores in math were 82 – 90 percent over the previous quarter. With these scores, it did not appear that he was struggling in math. I discovered that most of Jake’s behaviors stemmed from frustration. Jake knew when he needed help, but
Communication and “Autism Specialists”
by Amy Sequenzia From time to time I find myself writing about typed communication, and how Autistic typists are devalued by "autism specialists". There is a very vocal group of people - the "autism experts" or “autism specialists” - who refuse to accept that we can feel human feelings, that we can think complex thoughts, that we are people. "Autism Experts" and "Autism Specialists” Many, if not most of them are behaviorists, the ones who believe that everyone should strive to look as neurotypical as possible, and act as neurotypical as possible to have any value as human beings. They refuse
Teaching Autistic People
by Judy Endow Autistic People of All Ages Can Learn Just like people of all ages can learn, so is it that autistic people of all ages can learn. It is an utterly sad state of affairs that this even needs to be said, but unfortunately, it needs to be said. Too often I see autistic children being babysat rather than being taught at school. When I ask about academic curriculum being used, I am told, “Oh, he has autism” as if this is an answer to my question. In my work as an autism consultant I am called on
Epilepsy, And Living Epileptic
Epilepsy I am writing this as, partly, a rant. I don't want pity, and I don't feel sorry for myself. If you think you need to “feel” something, feel anger at the lack of funding on research that can actually save lives, the lack of understanding about what epilepsy is, the lack of accessibility, and the stigma. feel anger at the lack of funding on research that can actually save lives, the lack of understanding about what epilepsy is, the lack of accessibility, and the stigma Epilepsy is Complicated Epilepsy is complicated. It affects people in so many
Autism and Consequences
by Judy Endow Autism and Consequences Sometimes a person with authority over another engineers a consequence for certain behaviors as a way to decrease the frequency of unwanted behaviors. One way people learn is from consequences. For example, if you leave your car parked outside with the windows down and it rains, the natural consequence is that your car seats will get wet. Sometimes a person with authority over another engineers a consequence for certain behaviors as a way to decrease the frequency of unwanted behaviors. For example, a mother or a caregiver might decide that if hitting occurs at
Autistic People: Persons or Projects?
Autistic People: Persons or Projects by Judy Endow Autistic people experience the world differently than non-autistic people experience the world. One reasons for this difference is the autistic sensory system is quite different from the neuro-majority, which is considered the norm. In addition, the autistic thinking style has differences from the neuro-majority norm. Autistic Sensory and Thinking Differences The autistic sensory system takes in information from the environment. This information can come in too big, too small, delayed or distorted. Autistic thinking style is often visual, concrete and many have a thinking-in-pictures style of their own. This means processing
Disability, Dignity and Cost
Disability, Dignity and "Cost" by Amy Sequenzia Warning: I am going to mention "Right to Die With Dignity" legislation, my position, and other non black-and-white issues. I am against legislation that states the "dignity" of a terminally ill person should be a reason for euthanasia. I am not going to say that each person does not have the right to refuse treatment when all medical options have been exhausted and they will not survive the illness. Some illnesses, when the end is near, can be very painful. That's why I don't support legislation allowing euthanasia. Pain management is an option.
The Changing Implementation of Accommodations
The Changing Implementation of Accommodations Accommodations are something provided by law to people with disabilities. It is easy for people to understand physical accommodations such as wheelchairs and curb cuts. It is much more difficult for people to understand accommodations when it involves sensory and processing differences such as those common to autistic people. Because an autism diagnosis is one of a spectrum diagnosis there are a variety of ways autistic people experience their particular autism. In fact, even though there may be similarities, just as no two neuro majority people experience the world in exactly the same way,
Disabled TV Character and Positive Outcomes
One Person At A Time I wrote about this before but I want to emphasize a few points. I am talking about the effect of television, or any media, on how disabilities, and disabled people, are perceived by the non-disabled world. Specifically, I want to emphasize the - hopefully - positive effects of one TV show on its fans' views on disability and disabled lives. The show is X Company and this article contains spoilers. I will talk, again, about the character "Ulli". Quick recap: Ulli was a young boy with Down Syndrome, being kept as a secret by his
Why Disabled People Write About Ableism
Are You Paying Attention When Disabled People Write about Ableism? When I, and other disabled people write about ableism, we don't do it because we like the topic. We do it because we DON’T like it but experience it every day. We do it because we are protesting the many ways we are objectified, dismissed, ignored and dehumanized. I don't speak for all disabled people but I believe most would agree with my statement above. Forms of Ableism There are very obvious forms of ableism, from inaccessibility, to inspiration porn, to denial of rights. There is also the ableism
“Speechless”: A Comedy That Includes Disability
"Speechless" has been picked up by ABC. "Speechless”, is a new comedy series about a family with three children, one of whom is a teenager named JJ who is non-speaking and uses a wheelchair. Yes, a sitcom on ABC about a family with a child who has a disability and communicates using AAC (Augmentative and Alternative Communication). And JJ won't just be featured in one episode to teach the other characters a lesson, but is an integral part of every episode. Just like real life. If seeing a family like yours on a major network wasn't enough, JJ is being played
Autism, Behavior and the Impact of Kindness
Judy Endow on Autism, Behavior and the Impact of Kindness Please know that the behavior of people with autism makes sense in the context of their experience of the world around them. Because typical people do not share our context they are not often able to assign correct . They do their best by assigning meaning to our behavior based on what the behavior would mean were they themselves engaged in it the behavior. Often they arrive at wrong conclusions. Sometimes they even assign negative character traits to us based on their wrong conclusions. Example: As an autistic I can
Autism Awareness and May Flowers
Autism "Awareness" and May Flowers This is my THANK YOU to all who lived through yet another April with Autism Awareness, the bewareness and woes. It’s May now. My garden is blooming because you were there with me. May Flowers It is said that April showers Bring May flowers What does April ableist rain Bring to my life's garden? I see weeds of compliance, I see rocks of hate Thrown through the glass of my greenhouse Scattered shards cutting, Hurting the leaves struggling to breathe The ground covered with trash Left behind by the Vandals For
Autism Visual Thinking and the Parking System
Autism and Visual Thinking Many autistic people think visually. As a young child who thought visually I was often thought to be stubborn and insisting upon my own way when in reality I was merely trying to keep ahold of a thought. Today in my work I come in contact with many on the spectrum and see the same phenomenon at work. Let me explain with two examples: Example Parking Objects: Every day Britt comes to school with a toy from home. It is very difficult for her to leave the toy in her cubby so she carries it
Parenting and Caregiving Relationships
Parenting and Caregiving Finding the balance between parenting and caregiving children with disabilities can be challenging -- there's a fine line between hovering and being there to assist when needed. The dynamics of the caregiving/care receiving relationship are complex. They are constantly changing as our children grow up; what's nurturing and helpful for a five year old doesn't fly at ten, what was okay at ten, doesn't work at eleven, and so on and so on. The media typically presents the perspective of caregivers, particularly parent caregivers, but rarely provides the perspective of the person with a disability who uses personal
Disability Awareness Bewareness
Amy Sequenzia on Disability Awareness campaigns that silence the very people they claim to advocate for. I Am Aware of You I am aware of you Of your dismissiveness Of your hostility Of your badly disguised contempt You say you do all that Because it is a much needed First step A first step Towards acceptance, you say But we need to change our ways first A first step Towards better services, you say As long as not-us are served first You claim to speak for some of us The ones you call trapped Voiceless Severely damaged But
Autism Awareness and Autism Acceptance
No more deficit based Autism Awareness. Autism Acceptance focuses on the strengths and abilities of autistic people.
Autism, Death and Mental Health Therapy
by Judy Endow The traumatic event of death is something we all struggle with from time to time over the course of our life. It is no different for autistic people. I am often reminded to be sure to identify exactly what the autistic person is struggling with when it comes to their particular circumstances. I am remembering youngster who had a pet gerbil that died and he didn’t want to part with the beloved gerbil. Three days after the gerbil had passed the pet was still in the little plastic exercise ball, which the youngster was carrying around with
Parents, Are You Listening To Your Child?
As a non-speaking Autistic, I pay special attention to comments and statements made by parents of other non-speaking Autistics, especially children. Many times I see parents lamenting that they will never listen to their Autistic child say "I love you", or how much they long to hear those words.
Autism, Accommodation and Differential Expectations
People generally are very pleased with themselves when they have made an accommodation for me. I know this because they proudly announce it! In turn, I have learned to say thank you when people announce their thoughtfulness at making an accommodation for me. I truly am thankful because it allows me a fuller participation in the events going on around me. It also makes me smile because I have been making accommodations for people my whole life and it has never occurred to me to announce it!
Apple Celebrates Autism Acceptance Month with “Dillan’s Voice”
Autistic high school student Dillan Barmache, has so much to say and people around the world are listening. "Dillan's Voice" can be seen on Apple's website in celebration of Autism Acceptance Month. Apple has chosen Acceptance over Awareness and it's a big deal. Why ? Because 16 year old Dillan Barmache communicates using an iPad, you don't see that in the mainstream media every day. And because Autism Acceptance Month was started by #ActuallyAutistic people. ( You can read more about it's evolution from organizer Paula Durbin-Westby ) The world is listening and it's so exciting. Not being able to speak doesn't mean you don't have a
Normalcy is an Ableist Concept
by Amy Sequenzia Ableism: we know it is everywhere and we know it is the reason why disabled people fight the normative society that chooses to make us invisible. The idea that we should try to fit a pre-determined, arbitrary way of doing things excludes disabled people by default. We are often ignored, many times abused, used as props for inspiration porn, and generally left out - unless we change how we do things, unless non-disabled people feel at least a little comfortable in our presence. Despite laws and general common sense, any accommodations necessary to make a little
Autism and Friendship
By Judy Endow For many years having friends eluded me. I find that to be true with many teen and young adult autistics. If you are in that predicament I encourage you to hang in there because it does get better over time. One of the hardest things we have going against us as autistics is that it is generally non-autistics who try to help us to have friends. The only way they know how to help is to try to get us to make friendships work in the way they make them work based on the way their neuromajority
Autistic Visual Thinking Impacts Comprehension
by Judy Endow I think in colors. My thinking colors have sound and movement. When I hear spoken words my neurology automatically goes for the match – a match for the words I hear to a familiar concrete picture of something in the world outside my skin or to an internal picture I have stored in my memory. . When I was a girl I heard the saying, “I got the world by the tail.” Immediately, the matching pictures of my experience of the world popped up for me to see. I found the best match and promptly assigned
Autistic Neurology or Psychiatric Symptomatology?
by Judy Endow Sometimes autistic neurology – specifically our style of thinking and the way our brain handles information bumps up against what can appear to be psychiatric symptomatology. This has happened to me many times over the years. My style of thinking is visual along with being quite literal and concrete. I understand myself and, in general, thoughts, ideas and concepts by having or creating an object or visual representation of that construct. Here is an example: “…in my life, I have come to a fuller understanding of the parts of me as represented by actual pastel colored
The Predictability, Pattern and Routine of Stimming
by Judy Endow The neurology of a person with autism does not automatically organize the world outside their skin. When we are able to organize the happenings in the world we usually do so differently than neuro majority people. As a young child I saw over and over how light from the sun interacted with water particles rising from the ground and with water droplets in the air. This repeated experience became useful over time in that I learned the predictability of this occurrence. I also learned the effects of various factors (such as clouds, rain, air temperature, wind,
Person First Language and Ableism
by Amy Sequenzia If you are not Disabled and you are demanding the use of Person First Language (PFL), you are being ableist. If you are Disabled and you are demanding that other Disabled people use Person First Language, you are being ableist. If you are Disabled and want to use Person First Language when referring to yourself, I will respect that. I will also respect your right to demand that other people use Person First Language when referring to you. But the Person First Language concept is ableist, and I can tell you why. I do know the
Autism and Measuring Normal
by Judy Endow Even though people described me as in my own world as I was growing up, I was in the same world as every other human being. I could not help it that other people could not see the details of the world such as the sun sparkles and the misty tails rising up from the ground early in the morning like I could, but that didn’t mean our worlds were different. Instead our experience of the same world was different. My experience was much more robust because I had ever so much more to see
Disability History and Pop Culture
X Company is respectfully educating viewers about the ableism, discrimination and elimination of disabled people during the war. Hopefully, it will make more people aware of how disabled people are still discriminated against and abused in unthinkable ways.
Social Rules that Change with Age
by Judy Endow The “hidden curriculum” refers to the set of rules or guidelines that are often not directly taught but are assumed to be known. Most people automatically pick up this hidden information; their brains work that way. For those of us with autistic brains, this information is truly hidden; we do not automatically pick it up. Hence, the term, “hidden curriculum.” Even though our brains are not wired to automatically pick up this hidden social information, we can learn it. Once we learn it then we know it just like everybody else. Sounds easy. It is
Autism and Eating Out
Autistic author and consultant, Judy Endow, shares strategies for managing sensory sensitivities when eating out.
Six Questions Before Publishing About Children
Blogging About Children with Disabilities Protecting a child's privacy when parents write about their family's experience . How much information is too much when blogging about children with disabilities? The discussion revolving around #CrippingtheMighty, the hashtag created by Disability Visibility Project's founder, Alice Wong, is so important when considering writing or blogging about children with disabilities. It's imperative to listen to disabled people about their lived experience and the very damaging affects of content that objectifies and marginalizes disabled people like Inspiration Porn. At Ollibean, we believe in full inclusion and acceptance of all people and stories that objectify disabled people can’t exist in the same
Privacy Versus Popularity
Your child's disability is not about you. Your child’s disability is not your story to tell. If you do it in public at your child’s expense, you are not doing your job, which is parenting. - Amy Sequenzia on Ollibean By Amy Sequenzia The title could also be: Privacy of Disabled Children versus Popularity of Parents of Disabled Children. Which one is more important? The answer is clear to me. As I wrote before, a child's disability is not about the parents. Neither is the disability something the child has done to the parents. I know many parents
Disability, Ableism, and Assumptions
by Amy Sequenzia The title of this article probably isn't about what you think it is. This title refers to a couple of events that made me think about how we should never assume that ableism is something pervasive only in non-disabled circles. I am talking about more than internalized ableism, the need some disabled people have to distance themselves from disabled people they consider not worthy of any respect. I am talking about ableism that easily resembles, sometimes becomes, hate. I recently experienced this kind of ableism. It was hurtful, and it got worse than I described in
The Hidden Rules of Christmas
by Judy Endow Christmas will soon be here again. There is much about Christmas I love. There are many things about Christmas that took me a very long time to figure out. This is because my autistic brain doesn’t work in a way to automatically allow me to pick up social information that others expect me to know. This expected social knowledge is called the hidden curriculum. It is the information that everybody knows – everybody except people like me! During the Christmas season there are generally more social gatherings to attend than in everyday life. These gatherings are
Holiday Giveaway- ‘The Real Experts’
Ollibean Holiday Giveaway "The Real Experts" The Real Experts : Readings for Parents of Autistic Children edited by Michelle Sutton features essays by Nick Walker, Ally Grace, Emily Paige Ballou, Alyssa Hillary, Cynthia Kim, Kassiane Sibley, Sparrow Rose Jones, Michael Scott Monje Jr., Elizabeth J. Grace, Briannon Lee, Morénike Giwa Onaiwu, and Amy Sequenzia. "How do I help my child to thrive? To be healthy and happy, to fulfill his or her positive potentials, and to grow up to lead a good life? Every parent of an autistic child struggles daily with this question. Just trying to understand an autistic child’s actions, feelings,
“Stimtastic” – Great Resource forChewable Jewelry, Stim Toys and Fidgets
Stimtastic - Chewable Jewelry, Stim Toys and Fidgets. Run by an autistic person, Cynthia Kim, of another resource we love, Musings of an Aspie. Description from the site: Stimtastic is affordable stim toys, chewable jewelry and fidgets for autistic adults and teens as well as individuals with SPD, ADHD/ADD, dyspraxia . . . everyone who stims! Run by an autistic person, Stimtastic celebrates stimming as a natural part of our lives. Every purchase you make at Stimtastic.co supports autistic individuals: 10% of proceeds from sales at Stimtastic.co go back to the autism community in the form of charitable donations and direct giving. All
Holiday Giveaway!
We are so grateful to each and everyone of you who make our community so wonderful. We are celebrating you and the holidays by giving away some of our favorite things. Today's giveaway is our "Inclusion- it's everybody's classroom" mug.
Fear, Anxiety and Autistic “Behavior”
When it comes to autism and "behaviors" it's better to understand and work with -- not on--the autistic person who is employing the behavior.
14 Dead in Mass Shooting at San Bernardino Center for People with Disabilites
14 people have been killed at The Inland Regional Center, a non profit that serves children, adults and seniors with disabilities. An additional 14 were injured by the masked shooters . The building is open to the public and it has been reported that another group was hosting a Christmas party on the grounds. Police are currently searching the building and surrounding area for the active shooters who were wearing masks . At least three possible suspects fled in a black SUV and remain at large. If you have any information call 180078CRIME Live Stream
Autism, Visual Schedules and Prompting
Verbally prompting each step of a sequence isn’t an expedient way for many students with autism to learn routines.
Autism, Perseveration and Holding onto Thoughts
Autism, Perseveration and Holding onto Thoughts by Judy Endow Like many autistics, all my life I have thought visually. My thinking is comprised of pictures, colors, shapes along with their sound and movement. Given that experience, I have had to learn how to hold onto new thoughts because it doesn’t just happen automatically. This is especially true if I see a novel thought while in a slightly (or more than slightly) elevated emotional state. It doesn’t matter if the emotion is negative or positive. Here is an example: When I am looking forward to an event
Autism and Public Perception
Autism and Public Perception by Judy Endow Today we have added something to our public perception of autism. Historically that perception has been one of an isolated small child rocking or head banging, oblivious to the rest of the world. Even though that perception is wrong, it is the public perception. There is an addition to that perception in the past few years. It seems society has added an adult image of autism. It is another false image, but never-the-less, quickly becoming an accepted public image of what it means to be an adult autistic. Unfortunately for
Disabled Lives and Respect
I thought I wouldn't write about this case . I've been following it and the developments have been a sad reminder that disabled people are, in 2015, still seen, talked about and treated as less than human. Emily Brooks has been writing about it and her analysis is so comprehensive, I don't have much to add. But the rhetoric used by people involved in the case is making my heart hurt. If you don't know about it, you can read the articles linked above and here . I will not talk about Anna Stubblefield, if she raped an adult
Good Morning America: Called Out
As an autistic person I have my share of differences. Any time I am a way that the majority of people are not it is labeled “a difference.” Growing up and continuing on in adult life I learned that in general society does not consider my differences a good thing. In fact, it has often been considered good sport to poke fun of me for my differences. This happens to all people who deviate from the coveted standard of “normal.” Any difference is teased, mocked and ridiculed. If you are a larger or smaller, taller or shorter, faster or slower,
Assumptions and Ableism
I've recently read an article about how some researches are slowly starting to debunk long held assumptions about autism, Autistics, functioning labels, and how the world needs to provide more appropriate education to “all” Autistics. This is a quote from a researcher (Laurent Mottron): "Early childhood interventions should focus on harnessing strengths, rather than erasing the difference between autistic children and neurotypical kids" Of course, Actually Autistic people have been saying this forever. We have been warning parents about the damages caused by "therapies" that seek to train Autistics to make us look "indistinguishable from our peers” for a long
Autistic Patterns of Thoughts and Emotions
I use the movement of things outside of me for purposes of thinking and of processing feelings. Recently, autistic friends have let me know that most people in the world do not do this and that it is a rather common autistic experience. I have no idea how common so would very much appreciate autistic weigh in here. Thinking My thoughts are all in colors and pictures. Usually there are sounds attached, but not always. To think I need a way for the colors and pictures to move. When my sensory system is calm and integrated the thoughts
Deaf Teen Filmmakers Interpretation of Phillip Phillips’ “Home”
Acceptance, connection, and belonging. Home. Thank you Deaf Film Camp for making such awesome videos!
Uniquely Human Neurotribe
This past summer two new autism books were released within days of each other. Each, of it’s own accord, is a game changer if readership becomes large enough. Together the two books could serve to alter the course of autism history in terms of who is given the stage to tell the autistic story. NeuroTribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman does exactly what the title says – lays out lots of history. There are so many interesting parts that I never knew existed that have impacted what we believe we know about autism.
Privacy, and Parental Behavior
I've written about this before: parents of Autistic children sharing very private information about their kids, sharing moments that show the kids being upset, or having meltdowns. These parents share everything publicly, using pictures and videos, the children's real names, even if the children are adults. Some say that they are trying to help other families, by showing the "real face of autism". These are the "martyr parents". Others are very angry "at autism" and say they are doing what any parent who loves their children would do: “fight autism”. These parents call themselves "warriors". Still
Autism, Transition Programs and the Impact of Poverty on Self-Advocacy
I am an autistic woman who has lived both in poverty and as a middle-income person during my adult life. I am noticing how self-advocacy is typically geared toward middle-income status. This could be problematic since many autistic adults live in poverty. Based upon my experience I have come to realize that middle class self-advocacy works fine if in fact you are a middle-income person, but doesn’t work well if you are a poor person. I will explain this more using an example from my life as a poor person versus a middle class person. Dental Experience as
Visual Accommodations and Blessings of My Autism
The visual sensory aspects of the way autism plays out for me most of the time means that I get too much information delivered – things are too big, too bright, too bold – typically too much to endure all day. Practically, this means I need to accommodate my sensory system in a variety of ways. Let’s take but one example from my life where visual overload is a pretty constant problem. Here are some things I have found helpful: Environmental Accommodations for Overhead Lights Most of the time I simply do what I need unless it
Autism and Changing Classroom Strategies
The field of autism is very new – not even 100 years old yet! This means we are constantly learning new things. We now know that what works for most children to learn does not always work for autistic children. In fact, it can be detrimental to their learning. Those of us in the field of autism will likely need to change the way we deliver help to those who seek it and change the way we teach our students.
On Not Being “Pretty”
My friend Cara wrote this awesome article about being "ugly" disabled. You should click on the link and read it. Go on, I'll wait. Isn't it great? The article got me thinking. Like Cara, I also have cerebral palsy. I sometimes use a transport wheelchair because I have poor balance and I can't stand for too long. When I sit down, my body "flops", or it slowly leans to my right side until I am almost lying down. When it doesn't lean to the side, it tends to relax too much, sliding down the chair. An upright position
Autism and Processing Social Information
My autistic neurology means that I am not good at picking up typical social cues, understanding complex social situations, automatically picking up meanings of idioms, or understanding the hidden curriculum that most others automatically pick up (Endow 2012). This means I often look naïve and gullible. The fact is I AM naïve and gullible when I try to use the social constructs of neuromajority folks to navigate the world around me. When I was younger and deemed “in need of help” that “help” largely involved others trying to teach me to think and act as if I had a
Autism and Stubbornness
I am an autistic woman. Most of my life people have let me know they think I am stubborn and controlling. Over time I have learned to hide the behaviors so people do not think I am stubborn and controlling. I understand you view my stubbornness as a bad thing so I have learned to hide it. Today I would like you to consider that what you label as stubborn and controlling is often a solution to help us manage our anxiety and fear. Whenever we have a fearful or anxious moment – and those moments tend to
Accommodations – They Make All The Difference
Accommodations are important and they work. I should not be making a big deal about it. The ADA is 25 years old. Sadly, getting the accommodations we, disable people need, is often the opposite of simple. If you have been reading my posts, you know that I am very visibly disabled. I am also proud, and I don't try to be someone other than myself. I do require a lot of supports, and once I have them, I can do anything I set up as goals. I have goals, or simply things I want to do, that most people
Using Autistic Strengths to Make Friendships Work
I am an intelligent autistic woman. I manage my own business, have raised three great kids and interface with the world around me with a fair amount of success. Not too shabby considering I lived in an institution as a kid, was homeless as an adult and used public assistance for some years. Today I am content in my life. It is intentional. I have decided not only to be content, but how to intentionally let go of some things that used to bother me. I hope to get better with this over time because it is great feeling
Will Chuck forget?
Will Chuck Forget? Chuck is terrified to go to school. He has stuttering. Others laugh when he says something. He has a breakdown at school. Some boys do feel bad but have no courage to tell and stand up for him. The teacher pretends nothing is wrong. Chuck went missing. Questions: Who is responsible? What can his friends do if he is found? What does it mean to watch and look the other way? Will his teachers take initiative and how? What can his family do? Will Chuck forget? End of the story. I wrote this story when I
Autistic Burnout
Each individual who has an autism spectrum diagnosis got that diagnosis based on deficits. That isn’t good or bad, but rather, simply the way diagnosing works. Diagnostic deficits are based on the social and expected norms exhibited by the majority of people. Deficits are determined by a significant deviation from this majority norm. And, if you deviate far enough from the norm you get a label. If you have a group of deficits that line up with the autism spectrum disorder label then you get that label. Once an individual has the autism label, we begin teaching skills to
Surviving Inclusion: At The Intersection of Minority, Disability and Resegregation
Kerima Çevik on Surviving Inclusion: At The Intersection of Minority, Disability and Resegregation “I see the work of inclusion as probably the last frontier of desegregation. If you read the brief from Brown v Board of Ed, The board of education argued that if we let the blacks be integrated then the next thing you know is that we’ll be letting people with disabilities be integrated.” Joe Petner, Principal, The Haggerty School, Including Samuel NAACP picketing St. Louis schools circa 1950s. Photo credit AARP In October of 2008, we discovered that our son, who was transferred into a full special education
Autism and A Changing Sensory System
Something about autistic sensory difference that I do not see addressed in the literature is the fact that sensory system needs change over time.
Autism and Non-Fluid Speech
I am a speaking autistic woman. Even so, I rarely have fluid access to my speech. Often times I have in mind something I would like to discuss with a friend so as to get their thoughts and ideas on the topic, but even though I know what I want to discuss the words are not available as speaking words. Oh, I know the words – they are in my head – I just cannot get them to come out of my mouth at will. This often poses difficulties for me. One example is when I am with my
Now you know . You cannot unknow .
I told Professor Wurzburg's class in March and April about my life and advocacy for inclusion, communication and civil rights. The class asked me questions and I answered. On April 8 I talked to the class on Skype. "This is good. Princeton thank you for this class. Learning about disability experience and discrimination from people who are disabled is the only real way. I share my experience to change my reality and the reality for my neurodivergent brothers and sisters. No person should experience the abuse. All people deserve respect, inclusion and communication. Now you know . You cannot unknow
Autism and Visual Detail
Because of my autism I often experience sensory overload. Many times this is painful. I have learned that by keeping my sensory system regulated I can avoid some of the pain. Over time, in the process of becoming more regulated, I have found ways to enjoy my unique sensory system. One of the things I enjoy is a degree of beauty I can see in many things around me. I don’t think neurotypical people often see the detail I do. The reason I think this is because when I comment about something beautiful I am seeing others often do not see it. Sometimes
Ableism and Pity. Reject Them, Be Awesome
I have written about how I had to unlearn ableism. I have written about my uncooperative body. I always state how generally happy I am, and that I am comfortable being me. All this is true but frustration shows up, and grows, every time I meet ableism. I meet ableism a lot. Ableism brought forth by pity. Pity directed at me by people who seem to believe I am “trapped” inside my body, that I suffer, or that my life is so hard, they can’t understand how I can even have goals and aspirations.
Autism and Hiring Help
I recently moved. It involved working with a realtor, a banker, and numerous other people. Today I am contemplating sorting out what to put into my new desk drawers and have a literal pile of paperwork from various aspects of my moving adventure. As each person representing each faction of moving began working with me they explained what they would do, how they would do it and the expected outcome. For example, the furniture store guy explained how the sale worked, the ordering and delivery of the furniture and the return policy. I asked my questions which were answered
Inspired? What Are You Going To Do Now?
You have heard it before. You may have said it. "You are such an inspiration!" "(Person's name) is so inspiring!" I have heard it, and I have been the one supposedly “inspiring” people. And I very much dislike it. Disabled people are usually the main subject of what is known as "inspiration porn". We move a finger while disabled, we inspire. If we can't move, but we open our eyes, we inspire. We use technology to live, we inspire. We wake up and enjoy life, we inspire. We smile, we inspire. We breathe, we inspire.
The Hidden Curriculum About Fat
Just started another diet. I am determined to lose a little weight so as to be healthier. I know I can do this because I have done it nine times already. Each time I have been very successful, but the only problem is that each time I have lost the very same weight after having gained it back from the previous episode of losing it. I know I am not alone in this constant weight struggle. Lots of people lose a bit of weight only to gain it back again. Another thing I am not alone in is liking it
OLLIBEAN : Acceptance, Love, Self-Care: #AutismPositivity2015
Autism Positivity is coming out of April stronger. Tired A little frustrated Spoonless. But stronger. Autism Positivity is rejecting blue lights, casting a red shadow and obscuring the blue puzzle pieces of hate. We continue our #WalkInRed call to action, we are joined by accepting friends, old and new. As Elvis Costello has been singing for decades, even the Angels want to wear the red shoes. Acceptance, Love (and the Angels wearing red shoes) = Positivity Autism Positivity is reclaiming words used to devalue us, and giving them their true meaning. Defiant: standing for what we believe in and for
LOOPS
My body movement speed is not average. It is not in the mean. My thinking speed is. My thinking speed is faster than average. My body takes time to agree to cooperate with my mind. If my body chooses not agree to cooperate my thoughts remain my own. More anxiety less body cooperation. Less body cooperation more anxiety. Less anxiety more body cooperation. More body cooperation less anxiety. Excerpt from Wurzburg Seminar at Princeton University
On Surviving Inclusion
On Surviving Inclusion by Kerima Cevik Three young Black soldiers, bubbling over with the news that the Civil Rights act was just signed into law, and ready to demand a front door entrance and equal treatment everywhere rushed around places where people of color were formerly unseen and unheard. Image is of the first page of the Civil Rights Act of 1964. Credit National Archives. I cannot impart on you what this moment in time meant to them. Imagine being told all your life that you were less than others. Imagine approaching your local supermarket
Scientific Validation of Autistic Humanity
When I was a teenager, the “too much” of life caught up with me. Everything in the world around me was just too much. …too much noise with the varying sounds of the world clamoring to grab my attention, their pitches and tones wildly crashing into each other as if competing for a speed prize on a race track – or so I wished … If only the cacophony of the world outside my skin would at least line up and compete in some orderly fashion – like race cars on a race track – it would then allow
Synesthesia
Synesthesia I am a synesthete. I see colors and movement to music – to all sounds, actually but music makes everything prettier. I also see words, I can feel them. My synesthetic experience has always been beautiful but I never paid extra attention to it. The colors, the movements and the feelings have always been there. Recently, I have been expanding my musical experience, and I am enjoying it greatly. I am paying more attention to what I see, to what I feel. It is hard to explain. I wish I could paint it, but I can’t. So I wrote
Being Comfortable In My Skin
When I shared my post "Celebrating My Life" one commenter pointed out that “very few people are as comfortable in their skins” as I am. This got me thinking about what makes it possible for me to not only be ok being me, but to be proud of who I am. What makes me an unapologetic, unabashed, proud disabled woman? According to followers of the medical model of disability – most doctors and all the self-proclaimed “experts” – I have a long list of “devastating”, “severe” and even tragic deficits and impairments. Their “deficits list” would look like this: Non-speaking
Autism, Sensory Regulation and Movement Fluidity
Many any individuals with classic autism seem to have neurological movement differences. When these movement differences play out in our bodies, it is easy for onlookers to see, as we may get stuck in one position or in repetitive movement. Sometimes there can be difficulty in getting a body movement going, and at other times once our body is in motion, we cannot stop even if we want to. These movement differences can also play out in thoughts, speech, and emotions, areas that are not as readily observable to onlookers, yet can be daily obstacles to outsmart for some of
Celebrating My Life
Celebrating My Life Amy Sequenzia won't stop celebrating her autistic, disabled life. le I am writing this prompted by something John Elder Robison (I will refer to him by his initials, JER) wrote about Autism Awareness/Acceptance Month, in particular this quote: “We may have gifts too, but disability remains the basis for diagnosis. Some autistic people are rendered non-speaking by their condition, and I can’t imagine who would celebrate that. Others live with significant medical complications like epilepsy. I’ve yet to meet anyone who celebrates that either.” I commented that JER does not have to “imagine”. I am here, I celebrate being non-speaking, I celebrate
Autism and Stuck Emotions
It has taken most my lifetime for me to begin figuring out stuck emotions in relationship to my autism. In discussing this with other autistic adults I have discovered many share this problem. Some describe the stuck emotions as being shut down. There are variations of experience, but there seems to be a shared experience of stuck emotions in autistics. Everyone I have discussed this with agrees that stuck emotions are quite difficult to deal with and, in fact, have led to much misunderstanding and sometimes to psychiatric hospitalizations. Even though I have been talking to other autistics about this
The Reason I Blog
This blog (The Autism Wars), and all the other blogs and projects associated with it, are for my autistic son, Mustafa. But this blog is actually not talking about him without him or about daily life with him with some rare exceptions for times when his daily displays of empathy, kindness, and love towards me move me to write. When I say it is for my son, I mean it is part of my activism and my exploration of what it means to try and ally myself to his cause. This cause is something that too many of us are aware of
I Don’t Want Your Awareness
I don’t want Autism Awareness. Actually, I fear Autism Awareness because it only makes the world fear, hate and ignore us, one blue light, one puzzle piece at a time.
Take ASAN’S Pledge to Include Autistic Voices
Please join us and take The Autistic Self Advocacy Network's pledge to include Autistic voices in organizations, conferences and panels on autism. Would you support an organization that advocated for women or attend conferences about women if they failed to include women ? Of course not. Then, please, take a minute, sign this pledge and share widely. Join: Colin Meloy, Lead Singer, The Decemberists, Linda Walker Fiddle, Executive Director, Daniel Jordan Fiddle Foundation Mike Elk, Labor Reporter, In These Times Magazine, Steve Silberman, Investigative Reporter and Author, Wired Magazine, Cecilia Breinbauer, Executive Director, Interdisciplinary Council on Developmental and Learning Disorders
Autism, Inflexibility and Diversity
A universal assumption about autism is that autistic people tend to be inflexible and it is NOT GOOD to be inflexible. Let’s take a look at that assumption. Neuro majority people talk a lot about the inflexibility and the rigidity of autistic people. Seems like they get stuck in that train of thought. Isn’t it quite a narrow perception to believe that everyone should be just like you and should conform to your ways? And yet, as an autistic, if I want to get anywhere in the world I need do just that - to conform to the ways of
NEUROCOSMOPOLITANISM
A must, must have resource -NICK WALKER'S NOTES ON NEURODIVERSITY, AUTISM, AND COGNITIVE LIBERTY. NEUROCOSMOPOLITANISM http://neurocosmopolitanism.com
Uncontainable Presence
You are anywhere You are anytime Daring and enticing Changes unexpectedly predictable The obstinate constant I see your bright presence Piercing my eyes Crawling into my brain The pain comes swiftly And then, the deafening silence My body shakes in your presence Uncontrollable moves A dance of two wills The music is mute Rhythmically disordered Darkness and pain I'm lost in a sea of dread Forlorn as you carefully exit Leaving behind misery I tremble as the silence roars As the pummeling beat of you presence leaves The sky cracks open in blue A blissful fatigue Exhausted excitement But your
I Paint to Share My Autistic Experience
I started painting with acrylics in 2012. I wanted to use that medium to illustrate aspects of my autism. To date I have written several articles and books along with speaking in three countries about aspects of autism. Painting is one more way to explain some of the nuances of autism to those who might be interested. Painting allows me to show perceptions of the world that I see with my eyes as delivered through the neurology of my autism. I match up what I see with the colors and movements of paint on canvas paper. I have not taken classes
“Autistic People Should…”
Feb. 23, 2013 was this flash blog day. Autistics were asked to complete the phrase "Autistic people should..." as a way to make a positive difference in light of the suggestions given by search engines when that phrase is typed in the search bar. This was my contribution: Autistic people should take and keep a seat on the bus, just like Rosa Parks did in 1955 when fighting for social justice for blacks. I was born in 1955. I am glad black people no longer have to fight so hard for the chance to be seen as part of the
Being
My life through the years I've been listening to this It's enough to bring out tears I need it to immediately cease. They talk about my existence About my right to be I'm running out of patience I know who I am, I am me. Cure, treat, fix, change Words that hurt deep in my soul If I do all that they demand My essence is lost, nowhere to go. They know what to say to scare They do this intentionally But now it is my turn to dare I'm not backing down silently Not backing
Autistic Adults Do Not Look Like Autistic Children
I recently presented to a room full of people on the topic of Autistic People and Literacy. A few days later I again presented to another group of people on another autism related topic. It doesn’t matter the autism topic or whether the group I am presenting to be educators, therapists, or parents of children with autism – I am almost always approached by someone wanting to know how it is that I do not look or act anything like the autistic children they know. There are many reasons autistic adults do not look like autistic children. Here are some
#AutismSpeaks10 – Time to Shut Up
Autism Speaks asked us to tell how our lives have been touched by the organization’s “advocacy”. Autism Speaks should have known better. The party belongs to Autistics now.
The Quiet Key to This School’s Success
What do you do when you become the principal of a school with the lowest academic performance and the highest rate of suspension, absenteeism, and teacher turn over? Nothing. Nothing for 15 minutes twice a day to be exact. In 2003, James Dierkean, the innovative principal of Visitacion Valley Middle School in San Francisco, decided to try something unconventional to mitigate the negative impacts that stress was causing for his students and staff. He launched a meditation program. Specifically, a Transcendental Meditation (TM) program called Quiet Time. Principal Dierke and his staff, with the help
Outsmarting the Hard of Autism to Attend Live Theater
I love musicals and other live theater performances. About five years ago I googled the name of the performing arts theater in my town along with “season tickets” and was delighted to discover the possibility for a whole new adventure! My friend Marilyn and her adult son Jimmy (who also likes musicals and has autism) decided they would like to do this too. Each year I am the person who sends out the information on shows and orders the tickets for all three of us. Along the way we had to outsmart the hard of our autism and figure out
Five Reasons You Need to Read ‘Ghost Boy’ by Martin Pistorius
For over ten years Martin Pistorius was trapped in his own body, fully cognizant, but unable to speak or move. He was surrounded by people who believed he was incapable of thinking and tried desperately to get just one person to notice. His story serves as a wake-up call for all of us to drastically change our assumptions about speech and intellectual capacity as well as the need to radically reform expectations and treatment of people with complex communication needs.
How Being Included Changed This Boy’s Life
Having opportunities to learn with everyone could access more opportunities for all.
High-Functioning or Low-Functioning?
In this life I am missing the ability to go out into the world and just be accepted for my natural autistic self. I must inhibit so many of my natural responses just to fit in enough for others to allow me a place in the world. I have discovered that to have a place in this world I need to fit into it in a way that makes sense to the majority. For me, this isn't a good or a bad thing - just merely the way it is. Fitting into the world is something I need to balance
Respectfully Connected: Journeys in Parenting and Neurodivergence
We are all about respect, so of course, Respectfully Connected is a Resource We Love!
Drop, Settle + Train
The Supreme Court has a case that affects all disabled people, and the decision can be very damaging for us. We need to trust the police, and the police must “Connect, Respect, Protect” disabled people as they do with all people, not command, advance, hurt , kill.
Autistic Pride
This week someone asked me if I was proud to be autistic. It made me think about pride in general and about the term autistic pride. In general, feeling proud of myself is not something that is front and foremost in my life. When I think of who I am, words like female, adult, Dutch, heterosexual, white and autistic come to mind. None of these things are anything I am proud of or not proud of – they are simply words that describe me. I think of it as a launching pad. This is my originating place from where I
Talking to Autism “Advocacy” Organizations
I had the opportunity to speak, as a public comment, during a meeting of the Autism Society, Florida Chapter. It applies mostly to the National leadership because I think it is past time for some things to change. What I said might not have pleased everyone, and it might have made some angry. But I stand by the words - compliance is not my goal. It needed to be said though, not only to the Autism Society but to all organizations that say they “advocate” for autism. If an organization wants to help, it should not advocate for things Autistics
Autistic Meltdown or Temper Tantrum?
Autistic meltdowns and temper tantrums are not the same thing. Autistic meltdowns typically occur as a response to being overwhelmed.
Isn’t it a Pity? The Real Problem with Special Needs
The Real Problem with Special Needs We love this TEDx Talk from our friend, Torrie Dunlap, at Kids Included Together on benefits of inclusion and the real "problem" with special needs. Isn’t it a Pity? The Real Problem with Special Needs Torrie Dunlap, CEO, Kids Included Together Feeling Good about Casting Someone with Special Needs in the Show In the early 90s I was a student on this very campus, and actually, on this very stage. I was a drama major who had a dream to change the world through arts education. The world, however, had something different in
#IMREADY for Inclusive Media and Advertising
Hey JCREW #IMREADY for change. We want YOU to include models with disabilities in 2015. We want YOU to be part of the #15in2015 . 15 retailers including models with disabilities in 2015. Note: Changing the Face of Beauty quickly met its #15in2015 so now it's #15in2015 x 2! We want YOU to be part of the #15in2015 x 2 retailers including models with disabilities in 2015. We're thrilled to take part in the #IAMREADY campaign by Changing the Face of Beauty to promote inclusion in advertising. We believe everyone should see themselves reflected in all aspects of their community
The Pseudo Logic of “Not Autistic Enough”
Recently, I was told by a parent of a child on the autism spectrum that I am "not significantly enough affected by autism to be able to understand real autism" and therefore should stop speaking out about autism. Some aspects of my personal history (Endow, 2009) that you may find interesting include: Was nonverbal for some time Had self-injurious behaviors Lived in an institution for some years of my childhood Lived in two different groups homes Diagnosed with classic autism I understand that as a parent of a child with significant needs you may look at me and look
In Sidewalk Cracks: Authentic Relationships
In Sidewalk Cracks: Authentic Relationships In life we play on sidewalk squares. You on your NT sidewalk square You jump to my square to help me out (and so does everyone else) That I need all the help you can give. You teach me to copy your ways. I jump to your square and copy you. You are happy because I am learning To copy your ways in the world. All I have is you helping me And me copying your ways. Is it a wonder the feeling of alien predominates? There is more to jumping over the sidewalk crack.
Autism and the Importance of Stabilization
As an autism consultant I am often asked how I sort out what to do when I see an autistic client who is struggling in school or in life. As an autistic person I know first hand if stabilization needs are not met, regardless of the supports in place an autistic person will struggle. Stabilization consists of three areas that interplay – internal and external regulation in the context of a positive relationship. Internal Regulation ~ Sensory Diet Internal regulation has many components, but for stabilization I look at the sensory system. When a person has an autism neurology
#FreeNeli
by Amy Sequenzia Reginald "Neli" Latson was an 18 year-old Autistic high school student, a good student, a wrestler, when he was arrested while waiting for the library he often visited to open. Neli was, as teen fashion dictates, wearing a hoodie. He is black, and as bigotry, discrimination and ignorance dictate, he was profiled and reported as a criminal, "possibly carrying a gun". He did not "comply" with the officer who approached him, already with baseless suspicion, since there was no gun. An altercation sent Neli to jail, trial and prison. He served his time, and
LOVED As I Am
We can all use a daily reminder that we are loved, accepted and adored for being exactly who we are. Ollibean Goods of the Day- "LOVED as I am" , "You Are Loved" and "I Am Loved" .
An Autistic Weighs in on Friendship
I am a professional person who works as an autism consultant to various school districts when I am not speaking and writing. I have an autism neurology myself so I enjoy the privilege of being able to see and experience autism from a variety of viewpoints. One thing that greatly pains me is the continuing wrong assumptions professional people make about autistics and how those wrong assumptions often get interpreted as fact.
Disability Visibility Project
Ollibean is very proud to be a media partner of the Disability Visibility Project. Please join us in spreading the word about this important project dedicated to "Recording Disability History, One Story at a Time".
Autism and Holiday Schedules
Autism and Holiday Schedules by Judy Endow As an autistic getting through the holiday time can be quite tricky. As an autistic parent with children who had different needs it was even trickier. Routine and structure can go a long way! They anchor the days that can otherwise be perceived by an autism neurology as totally chaotic, which in turn, often leads to being overwhelmed and experiencing meltdowns. 1. Start by creating a visual schedule. You can simply use paper and pencil or use an iPad or computer to make your visual schedule. Words can
Ollibean Goods – Gifts That Celebrate Inclusion and Diversity
Ollibean Goods - gifts that celebrate inclusion and diversity . Ollibean Goods donates 10 % of net proceeds to fund literacy programs and provide iPads for communication .
Autism and Sorting Out Sensory Snags
All my life I have been easily overwhelmed by sound and motion. I can hear things nobody else even notices such as the hum of electric devices that are plugged in even when the appliance or device is not in use such as the coffee maker on my kitchen counter. I can hear fluorescent lights hum, the steady grind of ventilation systems in buildings and the crackling from inside my television when it is muted. When I am in the midst of much movement I tend to get dizzy. This is really distracting because I am in busy places when
Communication Supports for Speaking Autistics?
As an autistic, I know first hand how my communication abilities are different from the neuro-majority people around me. Most people do not understand my differences because I can speak. On the surface my communication abilities appear normal. This make it very difficult for people to understand when I need accommodations they are just that – accommodations – not personal preferences. For example, even though I can speak to crowds of thousands of people my neurology does not permit me to engage in telephone conference calls in a meaningful way. The most I can do is listen, but after a
Why I Don’t Like “Awareness”
Awareness campaigns of disabilities are only effective if they are planned and run primarily by the groups that are the subjects of the campaign. This is because such campaigns are not “awareness”, but “acceptance” campaigns. We welcome support, with focus on respect, equality and access. We don’t need “awareness” of deficits and tragic rhetoric.
Autism and Eye Contact
A challenge I am continually faced with as an autistic adult is the misinformed presumption and resulting behavior of neurotypical people when I do not look at them the in way they expect, want or demand of me. It is challenging because society has put the onus on me to change. Often it does not matter to others why I am different. They just want me to stop being different. Recently I was told directly, “If you want to be treated like a real person then act like one!” Eye contact can be hard for autistics for a variety of
World’s First Kid-Friendly Wheelchair From Wheelchairs of Hope
It's unacceptable that any child miss out on an education because of not having a wheelchair, and Wheelchairs of Hope is doing something about it. Wheelchairs of Hope is an initiative based on the belief that mobility from early childhood is a gate to education, and that access to education creates a new generation with improved skills, higher self-confidence levels, and more hope for the future. The UN, the WHO, and two Nobel Prize winners are backing the work of Wheelchairs of Hope. With production sites spanning three different regions, Wheelchairs of Hope will be able to guarantee shipment of
Autism, Differences and Murder
Ever since the not guilty verdict in the George Zimmerman trial and more recently, after a police officer shot and killed Michael Brown, I have been and continue to be very much afraid in the pit of my stomach. The not guilty verdict and the dragging on of the no fault attitude in Michael Brown’s shooting underlines the fact that in our society it is perfectly ok to track down, shoot and kill someone perceived to be acting different. We fear people who are different from us. Differences come in many forms. If you are White then someone Black is
Speeding, Autism and No Ticket Issued!
In the past few years I have had two encounters with the police while driving my car. The first time I pulled into a school parking lot, answered an email on my Blackberry, gathered my stuff together and let out a little scream, as I didn’t expect to see a police officer standing at my car door! “Good afternoon officer. How might I help you?” I inquired, knowing that it is very important to always be polite to a police officer. “Do you know why I am stopping you?” “No, I do not,” I replied honestly. “Do you know the
Attitudes – Information and Education
This is especially directed at parents, family members and all who spend a lot of time with disabled children. It also applies to adults, even if the way things happen when an adult is diagnosed or needs supports are different from how they happen with children. But we, disabled adults, also deserve to have supportive and informed people assisting us in navigating and participating in the world. When a child is diagnosed with a disability, or born disabled, it is said that parents, and family members, grieve. That's probably because the general perception of any disability is a negative one.
The BIG Deal About Small Talk!
by Judy Endow As an adult with autism small talk is the most difficult of all communication and yet it is likely the most important communication skill when it comes to developing real relationships with other human beings. I think of small talk as all the word fluff that people "lacking" autism (love to say it that way!) seem to require. I was reminded again last night when a dear friend popped out to chat online with me. Here is how our conversation started: Susie: hey Judy: what Susie: “what?” geez, was just saying hi Judy: STARTING OVER! Judy: hi
Visuals and Back to School Transitions
Our kids went back to school this month and likely many families are still struggling with the transition. It often seems that as the newness wears off, the getting-down-to-business-struggles begin. Autistic students have a particularly challenging time because their neurology does not permit them to automatically organize the world around them. Teachers and parents can support a child with autism to become more organized. For many it is an essential accommodation so they can be in a place to learn. Autistic students are often visual learners. This means that even though they may be verbal, as stress increases comprehension of
Attitudes – Grading People
Parents and family of disabled people should start demanding that everyone who is part of their children lives stops using functioning labels. We don’t need to be graded. We already have value.
ALL Students Should Be Safe at School
I spoke at Hillsborough County School District's board meeting on September 9, 2014 to address safety concerns for students with disabilities after Tamya Johson, a nine year old student on the autism spectrum was left sleeping on her school bus. The day after this meeting, September 10, Hillsborough School Bus Crash sends 21 people to the hospital. Transcript Mrs Elia, Board members, I’ve come to speak to you today to offer my help and the community’s help to do whatever we need to do to ensure all students are safe in our schools. Being safe while at school is the
The Case for Inclusion on The Inclusive Class Podcast
Check Out Education Podcasts at Blog Talk Radio with The Inclusive Class Podcast on BlogTalkRadio
How To Outsmart “Inflexible Thinking”
Because of my autism I have an autistic thinking style. One characteristic often attributed to me is “inflexible thinking.” Flexibility in thinking has to do with being able to adapt when circumstances change by adjusting or shifting from one expectation to another. This has never been easy for me, but I have learned how to live more comfortably with my autistic thinking style in a world where flexibility is much more highly valued than my inborn trait. First, I had to accept my own autism and the fact that I think differently (Endow, 2009). Self-acceptance doesn’t come easily for most
The Impact of 250 Words on Literacy
Ollibean Literacy Lifehacks : Tools for parents and care providers without education backgrounds to easily provide literacy instruction. Sign up for our free Flashcards of the 250 Words that represent over two-thirds of captioned television.
Attitudes – Communication
Communication is not only speaking, typing, texting or signing. Communication is also being able to listen and understand, being accommodated to make interaction possible.
What’s the Social Model of Disability?
What is the social model of disability and why is it important ?
Pharrell’s “Happy” in Sign Language
Beautiful American Sign Language interpretation of Pharrell Williams's "Happy." An expression of music in ASL composed by Rosa Lee Timm and Azora Telford. The video was produced by a team of Deaf campers & staff from Deaf Film Camp 2014 at Camp Mark Seven. CAST Rosa Lee Timm Azora Telford -- Campers -- (coming soon) -- Teachers -- Bellamie Bachleda Braam Jordaan Bim Ajadi Sophia Ballester Tate Tullier Wayne Betts Jr -- Counselors -- (coming soon) -- Interpreter -- Drisana Levitzke-Gray EXECUTIVE PRODUCER (VIDEO) Convo VIDEO PRODUCER Stacy Lawrence Sophie Sok EDITOR Bim Ajadi CINEMATOGRAPHER/CO-EDITOR Wayne Betts, Jr. VISUAL
Get Your Happy On
Love this video by Tina and Paul Sirimarco. Tina is an ASL interpreter and has been teaching her husband to sign. The videos they have created are so free spirited and joyful that they're really fun to watch. About Paul and Tina : Yup, it's official. They're adorable. "Don't Go Breaking My Heart" is just as much fun to watch.
Attitudes – Introduction
When you are disabled there is a lot going against you. Not that disability is the worst thing someone can experience. It is not. Disability can be hard and some things can be very difficult to deal with. Some of us need medication and managing this can be difficult; some of us experience pain and this can be energy draining; others might have trouble with sensory processing; some might even need hospitalization from time to time. Different disabilities require different approaches, and different types of accommodations. What non-disabled people should remember is that we either learn how to live as
More on Inclusion on Ollibean
Information and resources on Inclusion for parents, providers and children with special needs.
Supporting Autistic Relationships
As an autistic my connections to other people are perceived visually. In fact, I often need to have a concrete visual available in order to be able to think about my friends. A challenge I am often faced with is the erroneous presumption and resulting behavior of neuro-majority people when I need a visual in order to maintain a relationship. Many Autistics Are Visual Thinkers For those of us who are visual thinkers it seems logical that visuals would play an important part in developing relationships with others and in maintaining those relationships over time. In fact, many of us
250 Words Represent Over Two-Thirds of Captioned Television
"There are more than 500,000 words in the English language, but a person who masters only 250 words will recognize more than two-thirds of all words shown in television captions—provided the 250 words are those that are most frequently used. Equally dramatic, a beginning reader could be taught just 10 words—the, you, to, a, I, and, of, in, it, that—and then recognize more than one out of every five words. Mastery of the top 79 words means being able to read half of all words captioned." Source: Perspectives in Education and Deafness, Volume 16, Number 1, September/October 1997 Henry and
Students with Disabilities Excel with High Expectations, Access, and Inclusion
"We know that when students with disabilities are held to high expectations, have access to a robust curriculum in the regular classroom, they excel." Secretary of Education , Arne Duncan Until recently, the Department of Education's primary focus was evaluating states compliance meeting procedural requirements- timelines for evaluations, due process hearings and transition services. Under the new framework, Results-Driven Accountability (RDA), the Department will also include educational results and outcomes for students with disabilities in making each state’s annual determination under the Individuals with Disabilities Education Act (IDEA). “Every child, regardless of income, race, background, or disability can succeed if
Cheryl Jorgensen
Dr. Cheryl Jorgensen's website is an excellent resource for information about inclusive education, best practices, differentiated instruction, universal design, curriculum adaptation, writing standards based IEPs, facilitating social relationships and much more!
Lizzie Velasquez: Inspiring & Empowering a More Positive Online Environment
At only 25, Lizzie Velaquez is a motivational speaker, the subject of an upcoming documentary and author. In her viral TedX Talk, How Do YOU Define Yourself , Lizzie asks the audience to consider what defines them, and whether they're going to choose to give up in the face of negativity from others, or whether they're going to choose to be happy. After finding a video on Youtube which called her the ugliest woman in the world, Lizzie decided she was not going to let someone who had never met her, bully her – much less, define her. Lizzie has
Creating Visuals Instantly for Unpredictable Activities
As an adult with autism, knowing what will happen during each day is important to me. For children, who have much less life experience, it is often a deal breaker in terms of them being able to participate in life around them. Using visual schedules supports this need both at school and on ordinary days at home, but what about those times when life gets hectic or when spontaneity is in order? Why Visuals Work Having an autism neurology means that neither internal regulation (physical, sensory, emotions) nor external regulation (making sense of the world around us) just happens! We
On Disparity in Education: The Risks and Bravery of Being First
Being one of the first or the only students with any discernible divergence in any characteristic is dangerous, difficult, and involves tremendous courage. Over 50 years ago, at the beginning of a school year, the Little Rock Nine walked with angry white mobs behind them into their local high school to exercise their right to a public education with their white peers. Initially, the Arkansas national guard blocked their entrance by order of the Arkansas governor. Eventually, President Eisenhower ordered my stepfather's unit, the 101 airborne division, excluding my stepfather and all black soldiers, to escort the students to and
How to Improve Literacy Without Even Trying
One of the simplest things you can do to improve your child’s reading skills is already in your home. Closed captioning is free, easy to use, and a natural literacy booster. Research shows that closed captioning increases literacy skills in people of all ages. Simply having the captions on can dramatically improve vocabulary, word recognition, comprehension, and reading . Closed Captioning supports literacy for all. by Lauri Swann Hunt Turn on the closed captioning in your home; on your tvs, ipads, phones, and computers. Many people think closed captions are only beneficial for deaf and hard of hearing people. And,
Fractured Vision: One Autistic Phenomenon
I started painting with acrylics in 2012. I wanted to use that medium to illustrate aspects of my autism. To date I have written several articles and books along with speaking in three countries about aspects of autism. Painting is one more way to explain some of the nuances of autism to those who might be interested. Painting allows me to show perceptions of the world that I see with my eyes as delivered through the neurology of my autism. I match up what I see with the colors and movements of paint on canvas paper. I have not taken classes
An Odyssey: Learning the Hidden Curriculum
Learning the hidden curriculum social rules of society remains a struggle for autistics long after they grow up. For example, even though I am an almost 60-year-old woman with autism, over the past few years, I have learned a lot of new-to-me hidden curriculum items. The hidden curriculum refers to all the social information that everybody seems to know but isn’t directly taught to anybody. Here’s an example: Don’t scratch your privates really means don’t let anybody see you scratch your privates. Guessing at Hidden Curriculum Rules Once I amassed a volume of hidden curriculum items I began being able
Autism and Thinking with Colors
I think in colors. My thinking colors have sound and movement. When I hear spoken words my neurology automatically goes for the match. When I was a girl, I heard the saying, “I got the world by the tail.” Immediately, the matching pictures of tail started popping up in my head. It’s like having a personal version of Google Images. The initial picture search produced a variety of tails of animals. Then, there came the images of the ground mist I saw each morning when I went outdoors after breakfast. I assigned the world tail words I heard to this
Accessibility Is a Right Not a Privilege
Accessibility is a right not a privilege. 20 posts on Accessibility, Universal Design, and Inclusion It's Time to Go Beyond Access Creating Equal Opportunities For ALL Students to Participate in School Athletics State Obligations UNESCO Accessible Instructional Materials (AIM) Inclusion Is A Right Not A Privilege Paula Kluth on The Inclusive Class Roundtable The National Center on Accessible Instructional Materials Why Would We Want Inclusive Education? Ollibean Spotlight: Kerima Cevik Pay It Forward Activist How AAC and assistive tech make classrooms better for all : Paula Kluth The Case for Inclusion Part 3: Sea Change Access to the
What’s Underneath – Jillian Mercado
Jillian Mercado, the 23 year old model and editor and founder of Manufactured 1987 is featured in StyleLikeU 's "What's Underneath Project". The "What's Underneath Project" has select individuals remove their clothes to honor how style is not the clothes you wear, but rather, what's underneath. Transcript Off camera. StyleLikeU: So you should just talk very freely, don’t edit. Just, you know, we’ll edit and just let yourself just roll. You’ll, whoever ask the question you can talk to. At the end of each question you’ll just take a piece of clothing off. Jillian Mercado Voice: Ok, I have one,
I have Tourette’s. Please tell everyone.
This powerful performance by Jamie Sanders, spoken word poet and actor with Tourette's, covers bullying, shame, self-acceptance and empowerment in the best 150 seconds you'll watch this week.
Autism, Growing Up and Defining Friends
As an autistic, I have difficulties in the social arena in a multitude of ways. This was especially true during my growing up years. Even today as an adult, automatic social understanding is not my strong suit. I am, however, able to continually learn new things that enable me to do and be all I want in this world. Today, in my professional work I am able to provide some input to a variety of organizations and schools in regards to individuals with an autism label. One thing I consistently see regardless of where I go is the practice of
The Benefits of Real Food
Guest post from Chasing the Spring's Dani Johnson on the life changing benefits of a blenderized diet made for her daughter. We were drawn to the great recipes Dani shares as well as her experience of learning from adult g-tube users.
I Don’t Want Your “Protection”
This is for the people I refer to as "the FC police", or as someone once said, "the sheriffs".I don't want you coming to my life to "make sure" the words I type are mine, or that my facilitators are "honest". You can't because you don't know me, or my journey. All you say only shows how incompetent you believe I am, how helpless and without determination you think I am.It also sounds self-righteous and bullish, your stories and studies from long ago that prove nothing, that don't have anything to do with my life, my difficulties, my accomplishments
Autism, Airports and Lifelong Learning
For most of my life airports have befuddled me. It didn’t so much matter earlier in my life because the only time I used an airport was to go to visit my parents in another state. Back then, before we had the heightened security of today, people were allowed to meet passengers as they stepped off the plane which allowed me to simply follow them through the airport without needing to concern myself with the confusion all around me. In My 40’s Then, airport security changed. People picking up passengers could no longer go through the security checkpoint. I
Autism and Psychiatric Diagnoses
At different times during my growing up and even during my adult years autism wasn’t something people knew much about. I often came in front of mental health professionals. It is important to know that if you go to a mental health professional or take your child to a mental health professional in all probability you will walk out with a diagnosis of a mental condition as found in the DSM-5 – otherwise known as the Diagnostic and Statistical Manual of Mental Health Disorders In my adult life I obtained a master’s degree in social work. I did clinical work
@sesameworkshop This Autistic Wants to Say
Today we #EducateSesame and ask Sesame Workshop to listen to Autistics, to respond to our concerns and to end their partnership with Autism Speaks.
Is Autism a Disability or a Difference?
So many ideas in the larger autism community often become a debate. As an autistic this black-or-white, choose-your-side sort of thinking is very neurologically friendly to me. I like clear choices. But I also believe we are often unwittingly duped into believing we need to choose a side only because the idea is presented as a dichotomous choice. “Is autism a disability or a difference?” is one of these questions posed as a dichotomous choice in the autism community. The way the question is posed gives the impression that there is one correct answer. When Autism is a “Difference” Many
Autistic Pride
I am proud of being Autistic And of my Autistic friends I am proud of young Autistics Who have Autistic pride They amaze me I am proud of young Autistics Who are discovering themselves They are learning to understand the world Through creative Autistic eyes They make me smile Young Autistics showering us with love Bonding, sharing, exploring and laughing With words, gestures and looks Their Autistic selves leading the way They lead their own way Henry stands up for his right to be We follow his lead and stand with him He teaches the meaning of never giving up
Why The Lie We’ve Been Sold About Disability Is The Greatest Injustice
Stella Young of Ramp Up explains the Social Model of Disability, Inspiration Porn, and the lie we've been sold about disability in this nine minute TED Talk. Stella Young Transcript I grew up in a very small country town in Victoria. I had a very normal, low key kind of upbringing. I went to school, I hung out with my friends, I fought with my younger sisters. It was all very normal. And when I was 15, a member of my local community approached my parents and wanted to nominate me for a "Community Achievement Award". And my parents
The Importance of Opportunity
Dillan Barmache, a 14 year old autistic student, delivers his powerful 8th grade commencement speech using his iPad and brings the crowd to their feet.
Losing an Autism Diagnosis
I am an almost 60-year-old autistic woman who can navigate the world in a way that surprises some people when they find out I have autism. My teen years were spent in an institution because people did not know what to do with my “behaviors” or with me. Today I am a self-employed author, speaker, consultant and artist with a master’s degree in Social Work. Question: Did I lose my autism diagnosis? Official Answer: Yes and No No, an Autism Diagnosis Cannot Be “Lost” Technically, once a person is diagnosed with anything that diagnosis becomes part of their medical records.
Henry
Some call him a kid Others say he is a young man But whatever you call him You need to know this: He is courageous Brave and resilient He will fight and he will win It can be a fight for his rights When enemies come disguised as condescension It can be a fight for his dreams He will mobilize an army of friends To Stand With Him He is an example to many He showed other students the possibilities Henry does not fight for himself He is changing perceptions, changing the world Henry is a leader
Cry Me a River, Katrina Percy. Justice for LB!
I originally wrote this piece for the blog 107daysofaction.wordpress.com. I asked for permission to reprint it to help raise awareness on this side of the Atlantic about the story. If you'd like to get involved with Justice for LB and 107 Days of Action, please click here. I've recently been made aware of the story of the death of a young autistic man in the UK that's not getting any press that I'm aware of in the U.S. or Canada. I'd like to tell you Connor Sparrowhawk's story. Connor Sparrowhawk, known as "Laughing Boy" or "LB" to his friends and
April is Over!
Another April has passed – big sigh of relief! As an autistic I have a love/hate relationship with April – the AUTISM month. I love that increasingly more people over time have become aware of autism. I hate that Autism Awareness month contributes daily to many negative stereotypes of autism, most of it by people meaning to do something good on behalf of autism. As an autistic, I am meant to be grateful to all these wonderful people who are sacrificing their time, talent and money to be helpful to people like me. Some of the time I am grateful, but
FDA Advisory Panel Recommends Banning Aversive Shock Therapy at the Judge Rotenberg Center
Thursday, April 24, was a day that I'd been waiting for that day for a long time. An FDA advisory panel finally got to thoroughly hear both sides of the story of what goes on at the Judge Rotenberg Center, and to deliberate, based on testimony, whether what happens to the students there needs to be stopped. And they made the right decision. I just hope that they act on it quickly. I found out about the Judge Rotenberg Center by accident two years ago, doing some research for another post on my blog. I came across an article about
Skunk Hair, Autism and Social Understanding
There is a saying, “love makes the world go round,” but for real it is NOT love. Instead, it is hidden curriculum that makes the world go round! Hidden curriculum is all that social information that most people know even though they were never actually taught it. An example is the rule “don’t pick your nose” with the hidden curriculum being it is perfectly fine to pick your nose as long as nobody sees you doing it. Many people with autism have difficulty with hidden curriculum. Their brains are not wired to allow them to automatically pick up this untaught,
Young Autistics Making Me Happy – Expressions of PosAutivity: #AutismPositivity2014
This poem is for my young friends: Evie, Ty, Max, Fallon, Mu, Jack, Emma, H., Philip, Oliver, Brooke, Henry, Miri, Cody, MissG, MasterL, and many others I cannot name here but I know are going to grow up to change the conversation. You make me very happy!
Inclusion – How it Works Best for This Autistic
As an autistic, I sometimes feel boxed in by the best practice strategy of inclusion. Please don’t get me wrong – inclusive education is a very good thing! Historically, people with disabilities were not given access to public education. Then, over time, laws changed. Today we have special ed classrooms in our schools and the progressive schools practice inclusion. Today’s Inclusive Education Inclusion means that all the students get to learn in the general ed environment. Instruction is differentiated while physical, sensory, emotional and every other need of each student is taken into consideration so that all students learn together,
Dan Habib: Disabling Segregation
Dan Habib's Tedx Talk on the importance of inclusion, belonging and disabling segregation. Habib is the creator of the award winning documentaries, Including Samuel, Who Cares About Kelsey, Restraint and Seclusion: Hear Our Stories, Thalia and other disability related subjects . Check out Dan's Tedx Talk on the benefits of inclusive education for students with and without disabilities. Picture yourself back in your grade school classroom. I don't care if it's elementary school, middle school, high school. Just put yourself back there for a second. Look around the classroom. Do you see any kids with and without disabilities studying together
Hashtag Hate and How Pride Can Prevail
Guest blogger Kara Ayers is the Advocacy and Dissemination Coordinator for The University of Cincinnati University Center for Excellence in Developmental Disabilities (UC UCEDD) and has been featured on Disability Blog the official blog for Disability.gov. As a child, my family considered "hate" to be a bad word. We're teaching my preschool daughter the same. Someday I will teach her the tragic impact of hate and the freedom that it has stolen and continues to steal from so many. For now-I don't want her vocabulary or her mind limited by slurs and hate-filled language. As someone who works in social
More Than An Autism Diagnosis
I am an adult with autism. My thinking is visual rather than word-based. Autism gifts me with a literal and concrete way of thinking. My thoughts are all in full moving color. You can read about this and about my life in my book called Paper Words, Discovering and Living With My Autism. (Endow, 2009a) “Always, I have a front row seat to watch the show! Each color, with its infinite variety of hues and brightness, has its own movement patterns and sound combinations. Even though spoken words are the medium most often used by people to communicate with me, I
Musings from an Autism Outsider – Seeing the Full Spectrum
When I started writing about disabilities, I’d been working with disabled people for over fifteen years. I’d been in schools and agencies as the numbers of autistic people requiring support had started to rise. I’d heard the projections from the experts about how the numbers were going to continue to rise. And, in my most recent job, I’d had to tell several families with autistic teenagers that the agency for which I worked wouldn’t be able to support them, as we only supported individuals with intellectual disabilities. I knew that autism was a spectrum disorder. But I’d really only seen
Sesame Street, This is an Autistic Speaking
Sesame Street knew nobody was missing, or lacking, anything. I was perfect! Everyone is perfect! But in real life, as I grew older, doctors and teachers convinced everyone that I was too broken to be worthy of any effort toward education and a future. Nobody saw me the way I was seen by my friends at Sesame Street.
Goodnight Autism Puzzle Pieces
You may like lighting it up blue or using puzzle pieces as a symbol of autism awareness. I personally no longer like either of these things for lots of reasons and I post various blogs and articles about these topics in social media venues. My opinion, even though it may differ from yours, does NOT mean my autism is preventing me from understanding your point of view. It simply means we have different points of view. Yesterday I had a conversation in social media with a woman who explained all the reasons the puzzle piece symbolism was important to her
Parents – Acceptance Starts at Home
Parents, home is the single most important place for our children to feel accepted. We must embrace ALL of our children with love and acceptance for being exactly who they are. Home is the first place our kids learn about being accepted and accepting others. It is our responsibility and privilege as parents to create a nurturing environment where each child feels valued, safe, loved and whole. Our children are always listening and picking up on our feelings and attitudes. They're listening to how we speak to them, about them, and closely watching how we react to other people who
What Good Does Autism Awareness Do? It Doesn’t
I know most people want to do the right thing and believe “Autism Awareness” helps. But it doesn’t and it is time for some blunt truths, it is past time to stop walking in circles and move forward with Autism Acceptance.
Treat Others As THEY Want to Be Treated
I was taught to treat other people the way I want to be treated. This works out great when I am with autistic friends because we share an autistic neurology. It does not always work out well when I am with everyone else who populates this world from a neuro-majority place of being. Therefore, the onus has been on me to figure this out for myself. It has taken many decades, but I have finally worked it out in a way that allows me to live more comfortable in a world largely populated by folks who do not share my
#DearFutureMom Video Spreads Awesome Message From People with Down Syndrome
by Emily Ladau Have you seen this #DearFutureMom Video? We love it here at Ollibean and in honor of World Down Syndrome Day, we think it's definitely worth a moment of your time to watch. It's a great reminder of why people of all abilities must work together to celebrate and advocate for the rights, inclusion and well being of people with Down syndrome today and every day - because we are all people just the same.
“Sucking It Up” To Pass as Non-Autistic
Image description : Blue square with back text:"I look forward to autistics having everyday lives with things so many take for granted – going to school, being part of the community, having meaningful jobs with living wages along with meaningful relationships. Judy Endow on Ollibean It is a lot of work to look non-autistic, and yet, looking non-autistic is the ticket to sit at many tables. It is not right, and yet, I choose to expend a great deal of energy inhibiting my autistic ways for the sake of sitting at some of society’s tables. Employment is one such table.
Help Emily Ladau Win an Adapted Van
Hey guys, we need five minutes of your time. Disability rights advocate, Ollibean contributor, and all around awesome human, Emily Ladau is in a contest to win her first car. Emily recently had quite an adventure getting her driver's license and now she can legally drive! Emily's a wheelchair user and needs an adapted van and equipment which will cost around $70,000. Folks, please take a moment, read her story and vote daily so Emily can win the van she needs in order to drive. You can register to vote via e-mail, but be sure to check your spam folder for the password
Stop Combating Me – Why I Am Against Euthanasia
Today is “Stop Combating Me” flashblog. We are not the enemy but the way legislation is written puts us in real danger.
Being Disabled and in the Hospital
Being disabled and in hospitals is always scary because our lives is not valued as the lives of non-disabled. I was, in a way, lucky but the policies still need a lot of improvement.
Crossing Sign Conundrums
Over the course of my life I have seen many kinds of crossing signs. When I go to a college campus I drive past a wildlife sanctuary where a duck crossing sign is posted. Each spring mama ducks line up near their sign and lead their babies across the road while the cars waited. There were lots of ducks and some days the wait for motorists can be up to ten minutes. Every winter when I drive along a county highway to visit a friend I see a snowmobile crossing sign. A snowmobile trail is on one side of the
Kids’ Mobility Devices Just Got Cooler
A Fun Alternative to Children's Mobility Devices