• Communication Interaction and Autism Acceptance, Amy Sequenzia, Ollibean Logo

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

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

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

  • Blurred photograph of Mt. Everest, text reads" A VIBRANT MIND HIDDEN IN PLAIN SIGHT, Martin Pistorius . Ollibean logo, Ollibean and outline of a circle made up of equal signs of various shapes and sizes

A Vibrant Mind Hidden In Plain Sight

Martin Pistorius, author of the New York Times best-seller, Ghost Boy: The Miraculous Escape of a Misdiagnosed Boy Trapped Inside His Own Body delivers one of the most impressive and thought provoking Ted Talks ever. Martin Pistorius' story serves as an urgent call to action to change our assumptions about verbal speech and intellectual capacity. It also reinforces the absolute necessity to treat each human with dignity and respect. How many people are waiting right now for someone to acknowledge their means of communication? How many are waiting for someone to talk to them respectfully and then to listen and watch for subtle movements-

  • What you see as “inspiring”, the way we do things, the way we lead our lives, is not a superpower. It is just our way of navigating this – still – very inaccessible world . Amy Sequenzia on Ollibean

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

  • We all have value, even when the majority cannot see the wisdom behind our voices (spoken or not). Amy Sequenzia Ollibean logo "ollibean" and circle made from equal signs of various sizes and shape

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

  • Announcement. Your feelings about your children’s diagnosis are not as important as their right to privacy, dignity and respect. Amy Sequenzia, Ollibean Logo

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 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

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.

Respectfully Connected: Journeys in Parenting and Neurodivergence

We are all about respect, so of course, Respectfully Connected is a Resource We Love!

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

Assigned Friends Outcome

I was taught to say, “Thank you for being my friend.” So I say it. I was told to smile like I mean it. So I smile. I know I am supposed to feel grateful That you are my friend That you took the class On how to be a peer mentor to me – The good friends way – A pal for six weeks You have been defined You are a good person For giving up your spot At the popular kids’ lunch table To earn the community service hours You need for graduation By eating lunch with me,

More Problems With Functioning Labels

Every now and then my autistic friends and I have to explain why functioning labels are not helpful, why it works against acceptance, why it is something created by non-disabled people who knew very little about how autistic brains work, who saw autistics as lesser people, and who saw the need to grade us in order to apply their wrong assumptions in an attempt to "fix" us. To them, "high-functioning” autistics were "better", easy to deal with. The "low-functioning” autistics required a lot more work because their lives was "misery". That's the first problem: lack of understanding of autism, leading

  • For us, autism is not simply an add on to our personhood, but is in fact, foundational to our identity. Judy Endow

Person First Attitude Trumps Language

Am I a person with autism or autistic? Does it matter? And why?

Amy Sequenzia: Does it matter?

Should it matter that some of us are labeled intellectually disabled? Read the definitions, look at us in a realistic way and ask yourself; Does it matter? Aren’t we all worthy?

Mother

This is for every person who embodies the meaning of motherhood. This is for the ones who nurture and protect, who never consider their lives more important than the lives of the ones being nourished, educated, protected and loved.

  • AUTISM ACCEPTANCE, A HUMAN RIGHT. The Ollibean Equal sign is in the middle,

Autism Rights Are Human Rights

Autism Rights are Human Rights Autism Rights are human rights. That’s something every Autistic activist knows. It is printed in t-shirts we wear and it is something we have to keep reminding the world because our rights are violated on a regular basis. We have to fight for the right to be heard, for the right to participate in the conversation about us. Young Autistics have to fight for the right to go to their neighborhood school, with their friends, to learn the same curriculum a non-autistic child learns. That’s why we say that the fight for autism rights

  • a teenage light skinned boy with freckles, wearing a black jacket, blue and white striped sweater, pink collared shirt is standing in front of large columns and steps that lead to the Lincoln Memorial

Listen Up

Listen Up! the PSA from the Autistic Self Advocacy Network and Autism Acceptance Month has been released!

A Generational Shift in Understanding Life With Down Syndrome

"You cannot know if someone else's life is worth living without asking them and without even knowing them."

  • Autism Acceptance Month, Acceptance Is An Action

Autism Acceptance Month

"Acceptance is an action." Autism Acceptance Month from the brilliant folks at ASAN, is beyond incredible. We could read the About page again and again- and probably will. Check it out. Take the Pledge. What is Autism Acceptance Month? Autism Acceptance Month is about challenging ignorance, prejudice, fear, and hysteria about autism and autistic people. Autism Acceptance Month spreads the word that autism is both a neurological disability and a natural part of human diversity, and centers the voices of autistic people in the conversation about us. Autism Acceptance Month promotes acceptance of autistic people as family members, sons, daughters, spouses, friends, classmates, co-workers,

Neurodiversity IS the Next Civil Rights Movement

"When we talk about inclusion what we're talking about is diversity." Audra Zucherman, co-founder, The IDEAL School .The IDEAL School practices full inclusion while nurturing their students abilities to create real change in the world through compassion and self- empowerment.

I Feel Tired

Some parents understand that autism is a natural part of some children’s lives and they fight the societal attitudes toward autistics. That’s love. Some parents don’t, and they fight, and hurt, their own children. This is not love and is one of the things that make me very tired.

I Am Autistic and I Know What Autism Is

Autism is not a set of deficits. Autism is complex and all of us can self-advocate despite the difficulties we might face. Autism is life. I am Autistic, I self-advocate and I am happy.

I Am

How do you talk to someone who uses AAC?

Amy Sequenzia: I, Too, Want to Understand.

Why would a parent of an autistic child decide that it is better not to listen to other autistics? Why? I, Too, Want to Understand.

Amy Sequenzia: To You, Young Autistic Friend

Autistic advocate and poet Amy Sequenzia's message of acceptance and respect for young autistics for 2012 Autistics Speaking Day. "There is nothing wrong with being who you are. You are perfect in your uniqueness."

  • Ollibean Think Tank Amy Sequenzia Advocacy on turquoise and green background

Supporting Young Autistics

We hope that young autistics today will be proud of themselves and without shame. The message that boy received at that moment was the opposite of acceptance. It was ableist and it came from someone who is part of our own community.

Presume My Competence

Really, this is number one. Please presume my competence.

  • Top 10 things I need you to know

Focus on My Strengths

#4 Please focus on My Strengths. I have many. We all do.

Top 10 Things Autistic Self Advocate Needs Teachers to Know : # 3

Top ten things I want you to know. Number 3: Please talk directly to me, not to my support person.

  • boy wearing a turquoise tshrt that reads "Not being able to speak is not the same as not having anything to say" sitting on couch one hand on iPad one hand on his dog . The dog is yellow lab/golden mix .

Autistic Student’s Top 10 List for Teachers of Students with Special Needs #2

Top ten things Autistic student wants teachers, therapists and friends to know about students with special needs... they may be shocking to some of you, but hopefully to most they are exactly what you expect. Here's number 2.

“We Want Respect”: Adults with Intellectual and Developmental Disabilities Address Respect in Research

Abstract Respect is central to ethical guidelines for research. The scientific community has long debated, and at times disagreed on, how to demonstrate respect in research with adults with intellectual and developmental disabilities. To illuminate the v

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