Category Archives: Activism/Advocacy

Autistic Pride

March 15, 2015Activism/Advocacyadmin

French Translation: La fierté autiste
at http://www.judyendow.com/french-blogs/la-fierte-autiste/

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, mother, Dutch, daughter, 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 am launched forth into the world. These are things that are my personal givens in life.

When I think about pride and what sorts of things I am proud of I always think of other people. I think of my children and how each of them have made me so proud in various ways. I am proud of their accomplishments, but what I am most proud of is the people they have become and the significant others they have chosen for themselves. I am proud of the way they treat others and interface with life. My boys have grown into good men and I am proud of them.

As for myself, I like to feel a sense of accomplishment in my life. I like to know that because of my work other people are influenced in positive ways and their lives are better. It is very fulfilling to me as it gives my own existence a bigger, broader meaning. However, I don’t really feel pride about my work. I do feel privileged that so many people trust my input when it comes to their children, their families, their schools and organizations. And I feel proud of people I work with when they use information and the lives of people become better. I love so much when difficult situations improve and there is the feeling that things are better at the end of the day.

Even though I can’t really identify a personal feeling of pride about myself I can identify in me an autistic pride. I think autistic pride is different from feeling proud. Autistic pride is a collective thing. We feel it together with our autistic friends and acquaintances.
Collectively, autistic pride is not because we need to celebrate being autistic. Instead, autistic pride is because we need to celebrate our right to exist as full-fledged human beings.

For the most part autistic adults are a disenfranchised group of people. We are marginalized and have very little power afforded us by the majority. And that is how it happens with disenfranchised groups. It is assumed society’s majority is the giver of power to the less than groups – society holds the ticket and has the power to bestow that ticket to participate to the less than autistics.

Autistic pride side-steps the down under position this dynamic, with all its benevolence, tries to hand us. Autistic pride allows us to collectively declare and to celebrate the fact that we are human beings – real human beings – just like other people in our society. A disenfranchised group needs collective pride to rise up and take their place as equal human beings in society.

So, while I have difficulty identifying a personal pride I do not have that difficulty at all when it comes to autistic pride. I feel it. I join with my autistic comrades in celebrating our right to exist as complete, whole, full-fledged human beings in the world at large.

PS There is not such a thing as neuromajority (or neurotypical) pride because neuromajority (or neurotypical) people are already assumed to be human beings.

BOOKS BY JUDY ENDOW

Endow, J. (2019).  Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. Lancaster, PA: Judy Endow.

Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2006).  Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.

Endow, J. (2013).  Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.

Endow, J. (2009).  Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009).  Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With Autism Spectrum Disorders. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2010).  Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go. Shawnee Mission, KS: AAPC Publishing.

Myles, B. S., Endow, J., & Mayfield, M. (2013).  The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment. Shawnee Mission, KS: AAPC Publishing.

Originally written for and published by Ollibean on January 20, 2015

The Pseudo Logic of “Not Autistic Enough”

March 8, 2015Activism/Advocacy, Autism and Aging, Social Considerationsadmin

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 at your child and see no similarity. Please know that in the future of your child’s life autism will not look the same as it does today. Your child will grow and change over time just as all human beings do.

Some aspects of my life today (Endow, 2009) that you may find interesting include:

Married, had three children, divorced and raised them alone, one child with ASD diagnosis
Decided to get and obtained a master’s degree in social work in order to better support my children
Worked several years in a homeless shelter, developed and case managed a program designed to stabilize homeless shelter clients in their own apartments
Worked in the field of mental health for several years, limiting my practice to autism for the last two decades
Have authored several books, numerous blogs, been interviewed for TV shows, documentaries, have a DVD (with another in the works), maintain a website (www.judyendow.com) and speak internationally on autism related topics
Must spend time intentionally regulating sensory system in order to function in my daily life
Run my own business which enables me to combine work and flex calendar as needed for my autism neurology in order to allow me to do my work and earn enough income to support myself
Maintain a variety of work including consulting, writing, painting (see and purchase art prints and greeting cards at my website) and speaking by scheduling my work so as to avoid movement disturbances in my body (had a few episodes of catatonia in the past)
Do not speak on the phone for business. Only speak on the phone with a handful of people and after much practice that usually involves Skyping as a stepping-stone to phone only (without the ability to see the conversation partner)
Use a high degree of visual support (which I make myself) and routines (helps in reserving energy for novel situations) in my daily life
Am happy, have friends, am relatively healthy (a bit overweight), have a satisfying career and am just as autistic as I have always been

The practical response to the comment that I am “not significantly enough affected by autism to be able to understand real autism” and therefore should stop speaking out about autism is it is too late – much too late! I already have written several books that have sold around the world, have written numerous blogs and articles, have a DVD and am developing more content for my website that will include a video blogging feature. Also, I will not stop speaking on autism topics in my own country or in other countries. I will not be canceling already booked engagements and I will continue to book future speaking engagements. Even if I did stop, as I was encouraged, I cannot undo what is already out there in permanent form as books and such.

The logical response to the comment that I am “not significantly enough affected by autism to be able to understand real autism” and therefore should stop speaking out about autism is that these words do not make sense. Autism is a spectrum. There is no experience of autism that is more real than another experience of autism. All autism is real.

Furthermore, the idea that if a person can speak about their autism they are not autistic enough to weigh in on the subject is faulty logic. This sort of reasoning would mean that any autistic able to share about his/her autism really is not autistic in the first place – that autism means no ability to communicate. Not only is this untrue – it is a silencing attempt someone is trying to pass off by dressing it in a cloak of pseudo logic.

My friend Toshi Kinoshita summed this up nicely when he said, “That’s like saying Karl doesn’t like bacon enough to really love it and therefore should stop eating it. People can say the stupidest things.” (Personal Communication, 2015).

Just like Karl will not stop eating bacon, I will not be silenced. My experience of autism is not the same as anyone else’s experience of autism. It is my experience of autism. It is a valid experience of autism. When I speak and write about it many people tell me my words are helpful. Thus, I choose to continue writing, speaking, consulting and painting about autism – being who I am and doing what I do in this world.

BOOKS BY JUDY ENDOW

Endow, J. (2019).  Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. Lancaster, PA: Judy Endow.

Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2006).  Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.

Endow, J. (2013).  Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.

Endow, J. (2009).  Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009).  Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With Autism Spectrum Disorders. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2010).  Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go. Shawnee Mission, KS: AAPC Publishing.

Myles, B. S., Endow, J., & Mayfield, M. (2013).  The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment. Shawnee Mission, KS: AAPC Publishing.

Originally written for and published by Ollibean on January 4, 2015

High-Functioning or Low-Functioning?

March 1, 2015Activism/Advocacy, Communication, Social Considerationsadmin

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 with the essence of my being so as to come out in the most positive manner possible.

A few years ago I took a pottery class for adults – not disabled adults – just plain ordinary adults. I explained my obvious-at-the-time movement differences in terms of my autism. Several weeks later out of the blue, a fellow potter asked, “So Judy, are you high-functioning?”

In the context of working on my hand built sculpture, surrounded by others using potter’s wheels I replied, “Some days. And you?”

My question was never answered. Only silence followed. It wasn’t until I was on my way home that I figured out the question was meant to be in reference to my autism – not to my sculpture building abilities!

Many times when I disclose my autism the first question I am asked is whether I am high-functioning or low-functioning. People are not at all meaning to be rude, but rather, just trying to understand what they think is important about me.

In reality high-functioning and low-functioning are not real labels, having no definition, no skill set lists, and no diagnostic criteria. Yet these words are often used to determine opportunities that will be denied or extended to an autistic and in assigning the correct amount of personal responsibility and blame to an autistic for the way his autism plays out in everyday life.

Even though high-functioning is not a real thing and even though I am embarrassed to admit this, I would rather be seen as high-functioning than as low-functioning as this somehow has come to mean that others see me as a better human being. I have discovered the more I can look like a neuro-majority person the more opportunities I am given in life.

I now manage my own business that includes quite a bit of traveling and public speaking. By planning several days of quiet downtime before traveling I am able to inhibit my natural tendencies and perform for up to several days at a time. While this is great in that it enables me to be a financially independent human being, it also makes me to understand that the real of me is largely unacceptable in society at large.

This real of me is nothing more than my low-functioning ways! Some of my friends tell me that I do not need to inhibit my natural self when I am with them. For these friends who tolerate the real of me – even though they want to tolerate it – it is difficult for them. In addition, I have learned along the way that if I take them up on their offer that they, in turn, will limit their time with me because my natural ways exhaust and drain them. They are not bad people – it is simply the way their neurology as a neuro-majority person plays out for them.

To me this is one of the hardest things about autism. It is hard for everyone. And yet, I have some real friends in this life. Together, we tend to adore each other’s essence – that “stuff” that makes us who we are – while working out the challenges that physical proximity often brings to our friendship. We may not always look like typical friends, but we connect by the steel-strong threads that run between our souls. It is this connection that makes the meaningfulness in our friendship rather than our outward social graces.So, high-functioning or low-functioning? It is often the first question asked when my autism is disclosed. I now answer, “Yes, I am.” It is the truth and it weeds out the interested masses from a future potential friend!

Suggestions for Supporting a Child to Fit In While Valuing Who He Is

Implement planned down time before outings or events where your child will be required to be around others.

Think through options of how your child might “fit in” so that he is more likely to succeed in a variety of ways rather than to fail if he is not able to act as the world expects.

Example: At a family gathering options might include:
1) being in the main area of the house interacting with the guests
2) sitting off to the side in the main area of the house playing on his iPad
3) inviting one cousin to play iPad games on the extra iPad in the den that has been closed off to guests.

Provide opportunities for your child to participate in social events that are neurologically friendly to him such as visiting a sensory friendly Santa or going to sensory friendly movie theater. The idea is to balance the “fitting in” with times of honoring who he is, setting up enjoyable opportunities that don’t include the challenges that make it difficult for him to fit in with crowds.

Remember being social is not rewarding in and of it self for most autistics. It is hard work. Consider rewarding this as you would reward any accomplishment of hard work.

Provide access to other children on the spectrum so your child can experience a sense of community while free to be himself.

BOOKS BY JUDY ENDOW

Endow, J. (2019).  Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. Lancaster, PA: Judy Endow.

Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2006).  Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.

Endow, J. (2013).  Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.

Endow, J. (2009).  Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009).  Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With Autism Spectrum Disorders. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2010).  Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go. Shawnee Mission, KS: AAPC Publishing.

Myles, B. S., Endow, J., & Mayfield, M. (2013).  The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment. Shawnee Mission, KS: AAPC Publishing.

Originally written for and published by Ollibean on February 1, 2015

Outsmarting the Hard of Autism to Attend Live Theater

February 22, 2015Activism/Advocacyadmin

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 how to make this work for Jimmy and for me. We infused our outings with predictability, sameness and routine (Endow, 2009, 2011, 2013) to decrease anxiety thus increasing enjoyment. Some of the things we do today that ensure that both Jimmy and I will be set up to have a great time include these things:

The first year, by mere coincidence, we got seats smack in the middle of a row with a wall behind our backs. They were perfect for us! I found out what to do to insure we get these same seats every year and then follow through to make it happen.
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Jimmy finds it extremely difficult to pass in front people or to have people pass in front of him once he is seated. With these middle seats that doesn’t happen as long as we are the first ones seated in our row. We always arrive way ahead of time at the theater and as soon as the doors open we are among the first in line and thus, the first people seated in our row.
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I find it difficult to have people passing behind me once I am seated, whether in a restaurant or theater. Another reason our seats that have a short wall section directly behind us work so well for us!
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Jimmy and I both like to know exactly what we are doing ahead of time. We have developed a routine for going to the theater. Arrive very early, sit on a particular bench outside the theater doors, get in line as soon as the ticket takers arrive, find our seats and stay there until the musical is over.
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We are among the last to leave the theater due to where our seats are located. I love it because nobody is ever behind me on the way out!
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We always go to the Sunday afternoon matinee and we always go out to eat at the same restaurant. The first year we tried different restaurants, but it just became so much easier to do the same routine each time so that is what we settled on. Jimmy likes the food and I appreciate the place only has booths along an outside wall, ensuring nobody will pass behind me and that we will have a nice meal. The restaurant is small enough to not be very noisy so that works well for us all.
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This restaurant is also a popular place so I arrive 30 minutes ahead of Marilyn and Jimmy to put our names in to wait for a booth along the wall. I want the booth and Jimmy prefers not to wait so this routine serves us both well. I am always seated at a booth having coffee when my friends arrive.

Figuring out how to honor both of our autism neurologies in a way that resulted in being able to enjoy our season tickets has been great for us all. We constructed the elements of predictability, sameness and routine in our reoccurring outings along with ensuring our own accommodations. Next up for us is Book of Mormon, and then, Mama Mia the following month. Many autistics – just like Jimmy and me, with a bit of intentionality and practice on fine-tuning of the routine – can come to access community events they enjoy.

BOOKS BY JUDY ENDOW

Endow, J. (2019).  Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. Lancaster, PA: Judy Endow.

Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2006).  Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.

Endow, J. (2013).  Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.

Endow, J. (2009).  Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009).  Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With Autism Spectrum Disorders. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2010).  Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go. Shawnee Mission, KS: AAPC Publishing.

Myles, B. S., Endow, J., & Mayfield, M. (2013).  The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment. Shawnee Mission, KS: AAPC Publishing.

Originally written for and published by Ollibean on February 10, 2015

Person First Attitude Trumps Language

January 18, 2015Activism/Advocacy, Social Considerationsadmin

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

Some years back Kathie Snow was instrumental in bringing us into a person first language. It was a way to show respect towards a person with a disability. This continues to be important to many today who want to be known as more than a wheel chair user, the blind gal or the seizure patient. All people like to be on par with the human race – to be counted one of the tribe of homosapiens in our world.

The way many people with an autism spectrum diagnosis wish to be recognized is with the word autistic. For us, autism is not simply an add on to our personhood, but is in fact, foundational to our identity. Just as we would not refer to an African-American as a person with Blackness, to a person of the Jewish faith as a person with Jewishness or a boy as a person with maleness, many of us do not want to be referred to as a person with autism. For us the neurology of autism is part of our identity in the same way race, religion or gender is part of a person’s identity. Just as we refer to people as Black, Jewish or male many autistics want to be referred to as just that – autistic. It is who we are in this world.

Even so, not ALL people with an autism spectrum diagnosis want to be referred to as autistic. My friend Jacob, for example, explains that autism visits his body in such a way that when people see him coming they SEE the autism. Jacob feels very strongly that when others use person first language they are more likely to see him – Jacob, a fellow human being – rather than the hard of his autism in his body.

I want to respect all my friends and refer to them in the way they wish whether that be autistic or person with autism. This is easy to do when I am one on one with a friend. It is very difficult to do when in a larger group where honoring one means offending another.

The more I thought about this the more I began to see that even though friends may wish to be referred to in different ways this language is not really a dichotomously posed choice where we need to decide which is better and choose accordingly, being ready to defend our choice to whomever asks and especially to those who made the opposite choice.

Rather than seeing the polarized language of person with autism and autistic, I see a unifying construct. I now see that when Kathie Snow invited us to use person first language she was actually inviting us to come into a person first attitude. And it is this person first attitude that unites the word usages of person with autism and autistic. We all want to be included in the human race.

Today when I am do public speaking on autism related topics I on purpose use both person with autism and autistic, honoring all my friends preferred language while realizing that a person first attitude is the important construct. Thus, “I invite you, as the reader, to use whatever language supports you in a person first attitude toward fellow human beings who happen to have an autism spectrum diagnosis.” (Endow, 2013, pg. 14)

BOOKS BY JUDY ENDOW

Endow, J. (2019).  Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. Lancaster, PA: Judy Endow.

Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2006).  Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.

Endow, J. (2013).  Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.

Endow, J. (2009).  Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009).  Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With Autism Spectrum Disorders. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2010).  Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go. Shawnee Mission, KS: AAPC Publishing.

Myles, B. S., Endow, J., & Mayfield, M. (2013).  The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment. Shawnee Mission, KS: AAPC Publishing.

Originally written for and published by Ollibean on September 3, 2013