How to Figure Out If an Autistic Needs Fixing

January 27, 2014Activism/Advocacy, Autism and Agingadmin

I have autism. I am autistic. Both these statements describe me and both are true. However, these two statements are NOT equal.

Having autism means I have been diagnosed, based on deficit criteria used by the medical field, with a medically defined disorder called autism. The diagnosis of autism is housed in the DSM 5 so falls under the domain of psychiatric disorders. When autism was first described, based on behavior deficits, it was thought to be a psychiatric disorder. We now know differently, but the diagnosis of autism remains housed in the DSM 5.

Being autistic means something vastly different. Everyone’s personhood comes to be defined by his way of thinking, being and interacting in this world. I have an autistic style of thinking, being and interacting in the world. Thus, my very personhood is autistic. Just like my personhood is white and female, so is it autistic.

I am autistic and I have autism. Both apply. Both are true. I do not need to choose only one statement as my truth. People need to understand this. It is not a case of choose your side and fight for your cause. This is important. Problems happen because people do not understand the difference these two statements imply.

I have autism. Autism is a disability. Life with autism can be difficult. Because of autism I need certain supports and accommodations. Having autism means I can ask for these supports and accommodations due to the fact that I have a medically defined entity called autism. I appreciate my diagnosis. I appreciate having autism because this medical label allows me a way to talk about and to get the accommodations and supports I need to live my life.

But the medical label of autism does not define my personhood. Problems arise when the diagnostic deficit language of having autism is taken out of the medical realm and used to describe my humanity – the human being I am in this world – a white autistic female. This is who I am.

I have autism. The difficulties that come with my autism can be supported and accommodated.

I am autistic. It is my place of being in this world. The essence of who I am – all my thoughts, actions and interactions are based on who I am as an autistic white woman.

I wish more people understood the differences between having autism and being autistic. At this point in history it is assumed having autism and being autistic are one and the same thing. This sort of understanding by the general public and most professionals who deal with autistic people cause us to be treated as if we are only the sum total of our autism deficits rather than as autistic human beings.

Here are a few illustrations:

Painting Classes
If you are autistic and want to learn to paint and can sign yourself up for a painting class this is what you do. However, if your autism posses difficulties meaning you need to ask your broker to sign you up for painting classes you will likely wind up being offered Art Therapy.

Piano Lessons
If you are autistic and want to learn to play the piano and ask for assistance to find a piano teacher you are offered Music Therapy. If you are neurotypical and want to learn to play the piano nobody will suggest Music Therapy, but instead when you ask about piano lessons you will get referral information about piano teachers.

Making Friends
If you are autistic and want to meet people who have similar interests a Social Skills Group is suggested. If you are neurotypical nobody will think in a million years to give you information about social skills groups, but instead will tell you about things like the Saturday Bird Watch Hikers, the Quilting Class at JoAnn Fabrics and the Open Studio at the Pottery Shop – established groups or classes where participants share one of your interests.

At this point in history, because society views having autism and being autistic as the same thing, autistic people are assumed in need of fixing – as if having autism is the sum total of our existence. The opportunities people extend to us are based on this notion. No matter how old we get we are continually segregated into things like Art Therapy, Music Therapy and Social Skills Groups.

Some days it is down right impossible to get others to see I am more than my autism diagnosis. In reality I am an autistic person wanting to enjoy life and learn new things just like any other person. Sometimes I need support or a particular accommodation to make this a reality – not therapy.

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

The Scarlet A: Why I Don’t Want My ID to Broadcast My Autism

January 21, 2014Activism/Advocacy, Autism and Agingadmin

A few days ago I read the article Law Allowing Autism to be Listed on IDs Moves Through Legislature. The original story being referenced is from NBC News (story24473883 ©2013 Law Allowing Autism to Be Listed On IDs Moves Through Legislature may be available in archives).

There are good reasons why many autistic people do not want to be publically identified, such as having it stated on an ID card/driver’s license, as having an autism spectrum disorder. Even though autism awareness campaigns of recent years have produced a society that is now pretty much aware of autism that awareness often includes misconceptions and stereotypes of what an autistic person is actually like in everyday life.

Here are some everyday misconceptions and stereotypes from my own life in recent months:

“Oh, don’t worry! You cannot have autism because you talk.”

“Autistic people can be sweet on the surface, but are prone to violence at the drop of a hat. They can switch from docile to killers in an instant.”

“Everybody knows autistic people are antisocial….no good ever comes of being antisocial.”

“People with autism rock, wear hoodies and hurt themselves. I just stay away from them…don’t want them striking out at me just because I get in their way.”

“Either they are smart likeTemple Grandin or a killer like Adam Lanza.”

Misconceptions about who I am as an autistic person abound. I do not always choose to disclose my autism when in public because when I have done so it has not served me well. It seems John Q. Public is indeed aware of autism, but that awareness doesn’t include many useful facts. Thus, public perception of autism is largely based on what is picked up in the news, from TV shows and from other, mostly uninformed, people.

When people are aware of something such as autism it seems they start soaking up tidbits of autism related information as if they have feelers out for this information. I think it is similar to the phenomenon that once you purchase a new car you start noticing all the other cars of that make, model and color as you drive around town. Once you are aware of autism you notice when others are talking about anything related to autism.

The problem with where we are at this period in history is that nearly everyone in our society is aware of autism. Their feelers are out and they pick up various sorts of information to inform themselves. Some of that information is merely another person’s misinformed opinion. Sometimes it is the misperception of news stories that link crimes with a person’s autism. Other times society is lured into thinking an autistic person is like a sitcom character such as Sheldon in Big Bang Theory or Max in Parenthood.

Additionally, there seems to be a high degree of invented knowledge. This happens when a person has autism awareness and adds in the neighbors ideas, the news media stories and maybe the information from the friend whose sister’s next door neighbor’s babysitter said….and then John Q. Public adds this sort of information in the hopper of his own sketchy understanding. Together, his sketchy awareness of autism along with his newly heard autism tidbits serve to invent for him his own explanation about people with autism.

This is how the general public comes to their understanding of who I am as an autistic person. Their understanding causes them to believe things about me that are not true. And based upon their beliefs – often, erroneous beliefs – they treat me in a way that makes logical sense to them in the moment. What makes logical sense to a police officer, a fire fighter, an airline attendant, a grocery store check out person, a teller at the bank, a cashier at a department store – or any other place where an ID is requested is typically based on a mix of truth and fiction about autism in general. If my ID is marked in a way to broadcast that I have autism I will be treated in accordance with that person’s current working bag of awareness, hearsay and assumptions about autism. Some will have real knowledge, but most people at this point in time have very little real knowledge about autism – only the socially accepted awareness enhanced by news reports linking autism to various crimes.

I do not choose to disclose my autism in most of the situations stated above. The times in my life when I am out and about in the public and do choose to disclose I have occasionally been pleasantly surprised by the understanding and accommodations offered by others. But more often I have been unpleasantly surprised by the assumptions made about me. I know only too well the consequences reigned down on me when John Q. Public is aware of autism. Sometimes it means a person will raise his voice volume thinking that somehow I, an autistic person, will understand him better if he speaks to me more loudly. Other times it means mall security is called because it is assumed my behavior will become violent after a friend discloses I am autistic as an explanation for the uncoordinated movements and loud voice that happen to me when I am in sensory overload.

Because at this point in history society is well aware of autism, but very short on understanding autism in a way that leads to acceptance I am not willing to have my ID card state to all who see it that I am autistic. While in rare instances it may be helpful, in many more instances it places a target on my back – one that might as well say “shoot me.” This is very real to me and to many autistics. It is why we do not want to have our IDs stamped with something that can be likened to wearing a scarlet letter – a scarlet A for autism. It simply is not safe in a world where awareness of autism is the status quo.

Autistics Can BE Friends

December 16, 2013Activism/Advocacy, Social Considerationsadmin

Just like people in the neuro majority do not automatically understand social norms of autistics so it is that autistics do not automatically understand the social norms of the neuro majority. This is not complicated. Our different neurologies sort us out to have different norms when it comes to behaviors around friendships.

As a society we seem to operate on an assumption that the social ways of the majority are the right ways. We do not think about this or talk about this. We all define the standard by a majority rules mentality. Then, anyone who deviates from this standard is defined according to his deviation from the norm. Most people don’t even think about this. It is just the way society operates.

However, I think about it. In fact, I think about it a lot. I also believe others should think about this more than they do. If people thought about this more they would come to understand how wrong this not-even-talked-about societal assumption is and how it can lead to hurting people.

This is what I am thinking about just now:

It hurt me when as a little girl all the kids had friends, but I only had peers. The other kids were my peers. They could sign up to be my recess buddy or lunch partner for the day. We all knew these volunteers were really not my friends even though adults would call them that.

I knew that I was the only kid in the class who could never be counted as a peer to anyone else. I also could never be the recess buddy or lunch partner – only the kid who needed one.

This continues to hurt me as an adult. It hurts you too. You may not even know our societal assumption that the social construct of friendship based on the perception that neuro majority way of carrying on friendships is the right way hurts you. It doesn’t even matter if you know it. It will still hurt you. This construct leads to social injustice. And whether you are aware of it or not we are all hurt when social injustice is part of our world.

It is social injustice when one group of humanity is assumed to be capable of being the friend while a smaller group of people is assumed to only need a friend. When you only see me as needing a friend we all lose something. When I was younger and only saw you as being a friend (but not needing a friend) we all lost something.

You see, I can also BE a friend, and in fact AM friends WITH some pretty wonderful people in my life. It took me most of a lifetime to figure this out. Autistic people are just like neuro majority people in that we all need a friend and we all need to be a friend.

I am writing about it hoping you will think about this more. Turns out I am more like you than I am different. I am able to BE a friend just fine – even when I do not act the way the neuro majority act when making and being a friend. Imagine that!

WARNING: If you think about this long enough you may need to change your paradigm of friendship when it comes to autistics. Instead of thinking it is good, kind, noble or heroic to befriend an autistic you may wind up hoping that someday one of your friendships might be with an autistic. WITH. Equal footing. Friends with each other.

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

Helping the Poor and Disabled

December 4, 2013Activism/Advocacy, Social Considerationsadmin

The holiday season is upon us. Opportunities abound to volunteer for a variety of good causes. It makes me cringe because during my lifetime I have been part of these “good causes” – sometimes part of “the needy” that the rest of humanity is encouraged to help and other times part of “the help.” I cringe because I have made many mistakes, regardless of my group identity from year to year, as I shifted from “the needy” to “the help.”

Please don’t get me wrong. There is absolutely nothing inherently wrong with helping others. It is something I consciously instilled in my children as they grew up, each holiday season choosing the projects to which we would donate our time and resources. Like others, I often purchase holiday gifts that support entrepreneurship of women in underdeveloped countries, disability groups and an assortment of charities. These things are nice and right and good.

What is NOT nice and right and good is when our actions stem from us drawing a mental line-in-the-sand placing “those people” we are “helping” on the other side – over there, away from us. Often we are not even aware when our attitude slides into this direction because it is such a prevalent societal attitude that it actually seems to be right and good when, in reality, it is nothing more than ableism dressed in pious clothing for the holidays. Sometimes when ableism is tied to holiday cheer and goodwill it is easier to rationalize and to call it by other names such as the Christmas spirit or to think it is part of peace on earth and good will towards all men.

Regardless of what you call it at holiday time or at any other time of the year there is a way to figure out if what you are doing is ableism or considerate and helpful. Anytime there is the proverbial line-in-the-sand creating any us versus them groups you are dealing with ableism. Sometimes ableism is easy to actually see with your eyes and other times only you know because ableism is in the way you think and feel. This is tricky because when you are caught in it the ableist thinking and feeling seems right and good, especially since ever so many people in our society participate in this status quo.

Here are some examples from my own life along with examples of both my ableist thinking and hopefully, some more recent nonableist thinking:

Toy donations where you purchase a toy and place it in a collection bin to be given to a “needy” child who somehow qualifies to receive a free toy.

My Ableist Thinking: It is good to give to poor children. It is not their fault their parents don’t know how to handle money or can’t keep a job.

Then, I remember when I was poor with three small children. I learned many things such as there is no good way to handle money when you have none and you cannot hold a job without reliable transportation and child care – both of which cost money you need to first earn to be able to purchase.

Today’s Thinking: It’s nice for all kids to have toys and gifts for Christmas.

Food drives where you donate specific food used to make up baskets or give money to the organization making the baskets to use in purchasing the food.

My Ableist Thinking: Parents should not have more kids than they can feed, but it is not the fault of the children. Those poor kids! I will gladly give to help them.

Today’s Thinking: Nobody should have to worry about where the next meal is coming from. In a country with our resources this is wrong.

Adopt a family where you purchase gifts from a wish list for each member of a family. Typically clothing sizes are included in the information. Sometimes giving groceries to make a holiday meal is part of the gift.

My Ableist Thinking: I wonder how parents get in the situation where they sign their family up to be adopted by a stranger just to get gifts and food. After all Christmas comes every year. It isn’t like a surprise that catches you off guard. If these people were smart they would have planned ahead for extra expenses of the holidays.

Then I was a mom with three small kids leaving a shelter to make my way in the world. Unbeknownst to me the shelter automatically enrolled us in an adopt-a-family program. I was embarrassed to accept thick, warm, stylish new winter jackets for my kids from the person who adopted my family. I invited the woman delivering the coats inside to warm up. I discovered that she herself went out and bought the coats for my kids. When I asked her what made her decide to do that she simply said, “Everybody in Wisconsin needs a warm coat for the winter.”

Today’s Thinking: I am so glad to be part of this world and can pay it forward because the truth is everybody in Wisconsin does need a warm coat for the winter.

Plain and simple; we are all part of something bigger than ourselves. Our attitudes are like markers used for drawing lines that reflect how we will approach and interact in the big wide world on the other side of our skin. When our attitudes draw circles, making us part of the human race, we are inclusive. When our attitudes draw lines putting any group of people on the other side of that line away from us we are playing with ableism.

This means that the very same actions we muster up when helping the poor and disabled can come from a place of inclusion or from a place of ableism. One attitude shares joy and life, the other a crushes with a heavy unworthiness sometimes drawing out a smoldering anger in others. Will your attitude draw circles of holiday meaningfulness where you include yourself in what already is or will your attitude draw lines that allow you to help those poor and disabled people on the other side?

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

I ALREADY AM A HUMAN BEING

November 2, 2013Activism/Advocacy, Autism and Aging, Autistic "Behavior", Social Considerationsadmin

Written in English: I ALREADY AM A HUMAN BEING
http://www.judyendow.com/advocacy/i-already-am-a-human-being/ ‎

French Translation: JE SUIS DÉJÀ UN ÊTRE HUMAIN
http://www.judyendow.com/french-blogs/je-suis-deja-un-etre-humain/‎

I do not know if you have ever thought of it this way, but it is a step up that today autistics have the opportunity extended to prove themselves human.

As bad as that is and wrong in ever so many ways it is a step up from 50 years ago when I was a kid and we were not even given any chances to try to convince anybody of our worthiness as a human being much less our intelligence. It is all so wrong and such a slow moving shift it is sometimes difficult to remain positive.

This past week I read two news articles on the same day that made me wonder if anything at all is changing in the attitudes of the general public in terms of knowing and accepting autistics for the human beings we are – YES, AUTISTICS ARE HUMAN BEINGS. Even when we do things differently based on our different neurology WE ARE FULL-FLEDGED HUMAN BEINGS. We do NOT need to first be made to act neurotypical before you grant us the status of HUMAN BEING because WE ALREADY ARE HUMAN BEINGS. I get so weary of reading sentences embedded in autism related news articles that seem to be based on an assumption that we are not truly human, but perhaps can be made into a human being by being forced to behave like a neurotypical person. Here are a few examples:

EXAMPLE 1: This study “examined the relationship between loneliness, friendships and well-being in 108 adults with autism aged 18 to 62 years. The study found that people with autism who have a group of good friends are less likely to feel lonely, depressed and anxious than those without many close friends.”

MY COMMENT: If the presumption is that autistic people are human beings why do we need a study to show that autistic people, just like human beings, feel less lonely, depressed and anxious when they have friends?

EXAMPLE 2: “A diagnosis of autism does not eradicate the essential desire in people to need intimacy. The desire is present, even if the means to achieve the desire – such as confident eye contact, an appropriate smile, looking and not staring – requires intervention by sources that understand autism. The main problem reported for the current lack of tools to help autistic people romantically is funds.”

MY COMMENT: Autistics have human desires because WE ARE HUMAN BEINGS. The means to achieve intimacy (or to achieve anything at all connected with our own quality of life enhancement) does not depend on funds to create programs with interventions that force us to act neurotypical.

It is burdensome to have to continually try to convince so many people that AUTISTICS ARE TRUE HUMAN BEINGS. I so much appreciate my autistic friends and allies especially on the days I feel down about the way I am perceived as not quite a real human being. This is why we so much need each other – so we can take turns holding the space for one another when it seems personally hopeless. And onward we go living our lives to the best of our abilities sometimes taking the tickets others extend to us to be part of their world.

And when people don’t willing give me a ticket to participate in the human race – well I hate to say this, but I have learned how to sometimes steal tickets and force my way in at times. I hate stealing, but sometimes it is better than being denied access. The devil part of me wants autistics to go to stealing tickets classes rather than social skills groups. It would be great to learn to take our place in the world being who we are rather than being made to act the part of who we are not as the only way to be allowed access to membership in the human race.

Inclusion is great when it happens, but it puts me in the position of being dependent upon your benevolence to extend it to me. Even though inclusion is meant to be a good thing, and it often is, inclusion also practically turns out to mean that you get to decide when, where, if and for how long I will be given the ticket to be part of humanity.

I am near retirement age and tired of needing to continually wait for society to bestow my own humanity upon me and to act as if that is really theirs to extend to me when in fact it is not! Because you see, regardless of what you believe or how you act – I ALREADY AM A HUMAN BEING.

REFERENCED LINKS

http://sfari.org/news-and-opinion/blog/2013/adult-focus

https://www.autismdailynewscast.com/romance-and-autism-dating-is-more-than-possible-for-people-with-asd/

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