From “Severe and Low Functioning” to “Kind of a Big Deal”

October 23, 2013Activism/Advocacyadmin

Some people consider it so abhorrent to entertain the possibility of having a child with autism they are willing to do a sperm screening that allows doctors to selectively choose only sperm that will produce female children to impregnate the mother. Since there are currently four times as many autistic boys than autistic girls the thinking is that only allowing sperm that will result in girl babies at least reduces the risk of autism.

There are ever so many areas to address in this article and others have done so here and here, but I will only address one area. What a child struggles with today is not necessarily indicative of who and what he will become once he is grown up. I will use myself as an example.

When I was a youngster I had many difficulties. I was actually institutionalized for some of my growing up years. As a young adult I continued to have difficulties in life. In fact, it took me longer to “grow up” than most of my peers. I was born in the 50’s and there was no such thing as autism awareness, supports, programs – nothing, zero, zilch. If I had been born today the terms applied to me would be severe and low functioning.

I was that autistic in the making that the sperm selection article is hoping to prevent. It wouldn’t have worked well in my case because I am female so they would have missed the sperm that made me since they are only booting out the male-making sperm at this point.

There is much research today in the field of autism focused on prenatal identification of autism. This would allow prospective parents the choice to abort an autistic baby. I am not here to argue for or against the idea in this blog. I am here to say I am glad I was allowed to live.

My life has not been easy, but it is my life. I would not want it snuffed out. From a once institutionalized child, characterized as severe and low functioning I grew up over time into the woman I am today. If you want to read my story it is in the book called Paper Words: Discovering and Living With My Autism, which won a 2010 International Book Award.

Fast-forwarding from childhood to fifty years later – today I am an accomplished woman professionally. I have two different publishing companies that have published a total of 10 publications in the field of autism since 2006. I am an international speaker on many autism related topics. I am a consultant to school districts and agencies on behalf of autistics, focusing on capacity building through staff training and coaching. I volunteer on state and national boards for autism organizations. I own and run my own business and know I am successful as evidenced by the fact that people keep hiring me and paying me. Many people tell me that I have helped them immensely.

I also have a full and meaningful personal life. My three grown children and their significant others bring me great joy. They are all happy and productive in their chosen fields of work, good citizens and wonderful people each in their own right. I have several good friends and more acquaintances than I know how to remember! I go out once a month with a group of friends. Last month I brought my newest, just out book Painted Words: Aspects of Autism Translated for my friends in this group. Jackie brought me a touching gift to express her sentiment – a package of napkins with a picture of an old-fashioned lady with the words “I’m kind of a big deal.”

My life is not always easy. I have to outsmart the day-to-day difficulties just like everybody else. Autism makes it extra challenging some days, but it also gives me an edge on some things. I appreciate that I had the opportunity to be born, to grow up and to become the me I am today.

So that is my story. From an institutionalized child who was severe and low functioning to 50 years later being “kind of a big deal.” I know people will say things like, “you are not like my child” and some may turn it into “inspirational porn,” but my story and my life are what they are regardless of what anyone says or does with the facts.

If you were my parents and the prenatal tests informed you that I had autism what would you do? If you could select sperm that made sure you did not have a male child in hopes of reducing your chance of having a child with autism would you do it? It isn’t here today, but one day you will very likely have the opportunity to decide.

For autistics growing up today and their parents please know that what you see in the every day life of child today does not necessarily predict what adult life will look like. I know many adult autistics who live full and meaningful lives with all varieties and flavors of autism in their bodies.

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

Don’t Mix Up Empathy and Civil Rights

September 28, 2013Activism/Advocacy, Autistic "Behavior"admin

French Translation: Empathie et droits humains : deux approches à ne pas confondre

Many times in the autism community parents of autistic children do not like autistic adults weighing in on situations that have to do with their autistic children. I am an autistic adult and often have parents telling me that I should not judge situations if I have not lived it – the “until-you-walk-a-mile-in-their-shoes” is told to me nearly every week as I post the latest news articles along with my comments on social media.

The news articles vary. Some weeks it is about the latest murder of an autistic by their parent. Other weeks it is about some new “treatment” for autistics such as having them eat parasitic worms or endure bleach enemas in the name of improving or curing their autism symptoms. This week it is about the surgical debarking of an autistic teen.

Sometimes I am told that because of my autism I am not capable of feeling empathy. This is an erroneous belief about autism that has been shown not to be valid. In 2013 we now know better, but this knowledge hasn’t caught up to include all people in the larger autism community.

Never-the-less parents who connect empathy and the “walk-a-mile-in-my-shoes” phrase are EXACTLY right. These two concepts do go together. To walk a mile in someone else’s shoes requires a person to have empathy. Even so, whether or not you believe autistics are capable of empathy doesn’t even matter in this case.

The reason I say that is because the thread that these news articles have in common is the stomped on human and civil rights of autistic people. We are not treated with the same rights as other human beings. This is seen over and over, week after week even though the topics of the news stories change.

Just using three examples of news stories already given please consider:

Feeding a child worms to intentionally give them intestinal parasites is considered child abuse if done to any child except an autistic child.

Murdering one’s child of any age is a terrible crime. Whether or not you believe in the death penalty, it is the punishment rendered by law in some of our states. In other states life without parole or a very many year prison sentence is given. This is because in our civilized society we consider the murder of our own children a reprehensible crime unless that child is autistic, in which case he is blamed for his own murder while public sympathy goes to the criminal murdering parent.

Holding down a screaming child to intentionally induce internal chemical burns by administering a bleach enema is considered child abuse if done to any child except an autistic child.

These three examples along with the newest news item regarding the debarking of a teen with autism should not be about empathizing with the parents. Walking a mile in the parent’s shoes is about empathy for the parents. While it is wonderful to empathize most of the time it is not wonderful to empathize in any circumstances where the civil rights of a human being may have been violated.

There is an easy way to begin to sort this out and here is how to do it:

If it is wrong to do something to a human being it is wrong to do that same something to an autistic person because autistic persons are human beings.
If it is a crime to do something to a human being it is a crime to do that same something to an autistic person because autistic persons are human beings.
When a crime is committed empathy goes to the victim even when the victim is autistic. This should go without saying, but unfortunately, it needs to be said.
It is perfectly fine to understand the difficulties in the life of a person performing a criminal act, but the civil rights of the victim, even when the victim is autistic, trump the difficulties of the criminal.
A medical treatment, procedure or surgery for an autistic should only be considered if it is also used on other people. If it is something performed on animals, but not on people then it is not okay to carry out on an autistic. Again, this should go without saying, but unfortunately, needs to be said – autistic people are not animals; they are human beings.

For example, my one time neighbor had her dog debarked so she could keep her dog in her apartment. Even though her child made more noise than the dog, debarking of her child was never considered.

Note: It is irrelevant whether or not this child was diagnosed with an autism spectrum disorder.

On September 27, 2013, a news article (no longer available online) included the opening sentence of

“Doctors at UW Madison have found a way to quiet down autistic children who scream loudly and often…”

Likely there will be comments on this post about empathizing with the parents because that is where we are in public discourse about these kinds of news articles at this point in history. I hope there are also a few comments about the human rights and civil rights of autistics.

I know it is difficult for many in today’s society to consider us fully human with our own rights, but it is important to think about and talk about it if you want to be part of the conversation as time marches forward. History shows that when a critical mass of a disenfranchised group demands equal rights as human beings only because they are in fact human beings it is accomplished over time.

It takes a long time, but it is eventually accomplished. Even though adult autistics are still largely ignored or otherwise ridiculed a critical mass is developing. More of our voices are standing up and speaking out against the atrocities committed on our people.

So, talk amongst yourselves. Discuss the issues. Know autistics will be back to weigh in again on whatever news story pops up next. This will be an important conversation for as long as it needs to be.

Have a great week,

Judy

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.

French Translation
Empathie et droits humains : deux approches à ne pas confondre
Translation/traduction: Marie Lauzon, C. Tran./trad. a. (Canada) marielauzon.com

Originally written for and published by Ollibean

IT IS WRONG TO MURDER YOUR AUTISTIC CHILD.

September 5, 2013Activism/Advocacy, Autistic "Behavior"admin

Issy Stapleton, 14, remained hospitalized in Grand Rapids, Michigan late Wednesday after her mother, Kelli Stapleton, allegedly attempted to murder her.

State police Lt. Kip Belcher said two portable charcoal grills were burning inside the vehicle where Issy was found unconscious. He said the van’s windows were shut and investigators believe Issy’s mother intended to murder her daughter.

Assistant Prosecutor Jennifer Tang-Anderson said authorities don’t believe the incident was an accident. Benzie County Prosecutor Sara Swanson said she authorized a felony attempted murder charge.

Belcher says Issy may have suffered permanent brain damage from the carbon monoxide poisoning. Issy’s mother was also found in the van and though unconscious when found, is expected to make a full recovery and is expected to be arraigned yet this week in 85th District Court.

Attempted murder carries a maximum penalty of life imprisonment with parole.

The above story is what I constructed by merely pulling from the original story. It is horrifying. Any person who attempts to murder a 14-year-old sparks in us an outrage, as it should. It is not uncommon for people to read this and say, “I hope that murderer never gets out of prison!” or even, “Prison is too good for her!”

I shared Issy’s story above rather than her mother’s story. The news media shares Issy’s mother’s story as if the story is about Issy’s mother and not about Issy. That is because Issy is autistic. For some reason, in our warped culture, being autistic somehow means you don’t count – you are not considered human being enough to count even after someone tries to murder you! In fact, you will likely not even be part of the story after the first few sentences.

The story becomes one of excuses for the mother or care giver who attempts to or actually succeeds in murdering the autistic. At our core, as a society, we hold the belief that a disabled person is better off dead.

We don’t actually talk about this belief, but it is what is underneath when so many can read the story and agree with and sympathize with the murderer. In no other murder scenario do we do this – sympathize with the murder and blame lack of services. Disabled people are construed as a burden to their families and are even thought to be the fault of their own murders! Sympathy starts pouring in for the poor murderer who had no choice and who, in fact, did what any one else would be driven to do under the same circumstances is what we are told by reporters.

WRONG

There are ever so many things wrong with this story line we see repeated about the “unfortunate tragedy” due to the “lack of services” for the family of an autistic person, while writing out the actual autistic person who was in fact murdered or had an attempt of murder carried out against her.

Here are some facts the news reports do not tell us:

1. Autistic people are human beings. Human beings do not deserve to be murdered. PERIOD. NO ifs, ands or buts.

2. Autistic people’s lives are not worth less than other people’s lives.

3. Autistic people do NOT cause their caregivers to murder them.

4. Lack of services is not a reason for murder.

5. If you are a parent or caregiver and feel the only way out is to murder your child you are in crisis. Call a crisis line. Your child may be removed from your care temporarily. Foster care isn’t great, but it will keep your child alive while your crisis state can be addressed.

I know by writing this I will have many parents of autistic children jump all over me saying all the usual things they say. So, I will tell you a bit about me ahead of time.

I was “severe” enough as a child to be institutionalized. As a teen I lived in two foster care arrangements that were not appropriate for an autistic teen. One was a group home for mentally retarded adults (that word was not a bad word at the time) even though I was neither mentally retarded or an adult. The other was a group home for delinquent teens; I was a teen, but not delinquent.

It took me a long time to grow up, but I did grow up. Today I have 3 grown sons, one of whom is on the autism spectrum. I was told my autistic son exhausted all the services when he was a teen, including the state mental institution after which he was returned home to my care. At times I feared for my life. I feared for the lives of my other children. I was only told my son had failed all the services my county had to offer and that I should call the police when he became violent.

I foster parented a severely autistic teen for a short time. I went to college. I got a master’s degree in social work. I worked in clinical settings. Eventually, I limited my practice to autism. Today I have my own business. I am an author, consultant, artist and international speaker on autism topics.

I write all this about myself because, nearing retirement, I have experienced all sides of this many-faceted story. I know how it feels to be the victim, the mother, the caregiver and the social worker. I understand foster care from the angle of the kid in the system, the foster parent and the social worker. And I can tell you that at the end of the day no matter how I look it I know this:

IT IS WRONG TO MURDER YOUR AUTISTIC CHILD.

If murder is looking like a solution to you it means you are near the breaking point and need help. Call your local crisis center and say these words, “I am thinking about murdering my autistic child and here is how I would do it.” Then tell them your plan. If you do not have a local crisis hot line go to the nearest hospital emergency room and say the same words. It is not a perfect solution. It is a crisis solution, but will ensure you get someone to help you in the moment because murder is not a solution to your problem.

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

J.Cole Writes Apology Letter To Autism Speaks

July 23, 2013Activism/Advocacyadmin

http://www.complex.com/music/2013/07/jcole-writes-apology-letter-autism-speaks

J.Cole offended many over the lyrics “I’m artistic, you niggas is autistic, retarded” in his Jodeci Freestyle rap number. He was called on this. The Anti-Bullying Alliance created a petition and asked for a formal apology from each rapper, as well as the offending words be removed from the song.

Kuddos to J.Cole for writing an apology letter that sounds sincere. The disheartening thing about his letter is that it is addressed to Autism Speaks. J. Cole offended autistic people, not an organization – in this case an organization that many autistic people have actively boycotted over the years.

If you read his letter, yes, it does sound sincere. Also, it is very obvious that his view of autism has been gotten through the media. Unfortunately, this is where most of John Q. Public gets their information about autism. And by the way, understanding autism and understanding autistics are not equal things. I needed to say that because most people I run into assume they understand me, an autistic person, because they have heard about autism in the news and understand autism is whatever the news story happened to say about autism.

A friend pointed out to me that J. Cole was reaching out to autistics and simply chose the most visible venue. I understand this and it makes me mad. As an autistic I have understood for ever-so-many years just how invisible I am. You see, it is parents of autistic children who have been given by society the right to speak for and about all autistics – who they are, what they want, should and shouldn’t have, what their experience is, etc., etc., etc. Even though there are many autistic adults who can and do speak to the issues we remain, in large, invisible to society while an organization like Autism Speaks continues to be what is visible. And so it winds up that J. Cole apologizes to this organization, assuming that this will cover it nicely, assuming his audience to be parents of children with autism and college students with Asperger’s. That is pretty much the public face of autism in America.

Regardless of how sincere the apology sounds it isn’t directed at the people J. Cole needs to apologize to for his behavior. Autistics are human beings. We should count as real people. Unfortunately, this rarely happens, but instead typical people tend to interact with parents, effectively sending the message that autistics do not count as real people…again and again and again.

People, please think about this – truly think about it – For example, if you were hit by a drunk driver and paralyzed how would you feel if the driver apologized to the doctor and everybody thought that was perfectly ok because that drunk driver chose the most visible venue and he meant well. Even though those things are true, how would that make you feel? And then how would you feel if the people at the doctor’s office tried to make you feel ok by saying things like the drunk driver was doing the best he knew to do and he sounded sincere. Would you be ok with that – to not even count as a human being? Probably not. So then, why am I supposed to be ok with being counted as less than human only because of being autistic?

Society’s perception of the autism viewpoint needs to go beyond the parents of autistic children and college students with Asperger’s. We need to be represented by our own selves. In fact, all of yesteryear’s autistics have grown up and yet, very few ask us…they only ask parents to speak for us even though many of us – even those of us who do not have speech – have been speaking, writing books, blogging, etc for a very long time. We still are largely invisible to society. And if that weren’t bad enough, we are also discounted by ever so many in the larger autism community that include parents and organizations – people who actually CAN see us and DO KNOW we exist. We are often discounted and told either we are not autistic enough to know their autistic child’s experience or we are too autistic to be able to understand their child’s experience. So, autistic adults remain discounted or invisible for the most part.

When J. Cole apologizes to Autism Speaks for his offensive behavior toward autistics it feels to us like we are once again counted as less than human – not real people – in fact, invisible. And yes, maybe you are right that it is not really his fault because he has the public perception about autism. I would agree, but then, who’s fault is it? Who is the public? Are you the public?

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

After Community Outrage Seattle Children’s Hospital Pulls Bus Ad

July 12, 2013Activism/Advocacyadmin

Seattle Children’s Hospital had to pull an ad from the King County Metro busses on Friday July 7, 2013 due to complaints about the words “Let’s wipe out cancer, diabetes and autism in his lifetime” next to the face of a smiling youngster.

An online complaint campaign was organized by the Autistic Self Advocacy Network’s Washington chapter (ASAN-WA) to object to the ad’s assumption that autism was an illness to be wiped out like cancer and diabetes.

“Autism is a disability, but it is not a disease. It is not a life-threatening illness,” said Matt Young, co-leader of ASAN-WA. “The idea it’s a state to be wiped out has much negative impact on our lives.”

A Facebook post by Beth Ann Vosskuhler-Waleski echoes sentiments of many. Beth Ann wrote, “Autistic people such as myself do not need a cure, instead, we need people to accept us for what we are and to celebrate our gifts as well as they would celebrate anyone’s.”

On Monday, Katharine Fitzgerald, director of marketing and health promotion at Seattle Children’s said: “It’s been difficult because we do so much to support children, teens, and families affected by autism here at Seattle Children’s, and we’re doing amazing research at our research institute.”

The hospital has an Autism Center, providing treatment and support for individuals with autism spectrum disorders. The bus ad was one of three created as part of a $70,000 campaign to raise awareness for Seattle Children’s Research Institute.

Kudos to Seattle Children’s Hospital because after receiving a high volume of phone calls, emails and Facebook comments they pulled the metro bus ads and posted this official statement on its Facebook page, “We are sorry for the hurt and anger these ads have caused — that was never their intent.”

The offensive ads are expected to be replaced with a new version sometime during the next few weeks.

REFERENCE

http://www.huffingtonpost.com/2013/07/12/seattle-childrens-hospital-autism-ad_n_3582030.html

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