listening – barb rentenbach writes to andrew solomon, magic ensues

 

Two and a half weeks ago, I wrote a post entitled A Conversation about Autism and Empathy with Andrew Solomon  in which I shared, well, my conversation about autism and empathy with Andrew Solomon. I know, creativity abounds. Anyway, the dialogue that followed that post, both in its comments and on Diary’s Facebook page, meant a great deal to me, not least of which because it was driven not by those of us like me and Andrew who reside on the outside of autism looking in, but by autistic people sharing their own experiences.

I drew that conversation to the attention of my dear friend, Barb Rentenbach in hopes that she might join in and offer her perspective as a nonspeaking and long-misunderstood and oft-underestimated autistic woman. In response, I got this delicious photo ..  

 

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{image is a photo described in the next image, which is transcribed}

And posted it on Diary with the following …

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{image is a snapshot of the text on Diary’s Facebook page that accompanied the photo. This is what it says:

Image is a photo of my gorgeous friend, Barb Rentenbach, taken and shared here with her permission. Barb is autistic and nonspeaking. Her friend, therapist, and partner in crime, Lois Prislovsky, just sent me a note at Barb’s request to say that Barb had been working for over two hours to, in her words, “peck out” a response to my post today about autism and empathy. After two hours, she still wasn’t satisfied with it, so she plans to do the same every day until she feels like her words are “ready for prime time.”

The text on her iPad reads as follows:

“This needs to be my next newsletter tell Jess the cavalry is coming but slowly on a disabled horse. Cognitively intuitive B.”

#ThisIsAutism

#AlwaysWorthTheWait

#NoHurryHere

#NonspeakingDoesntMeanNothingToSay

#BarbRocks

#IfYouHaventReadTheirBookOrderItNow

#IMightBeYou

Barb worked on her response for two and a half weeks – each and every letter painstakingly typed in order to make her voice heard. Please read it. It’s long, I know. Break it into pieces if you need to. Start now and come back later if that’s what it takes. Three or four times if you must. But please read it. I’m begging.

So often, we have these types of conversations at the speed of light – Wireless Communication! Optical Fibers! Quicker Downloads! Faster! Faster! Faster! We trample each other, answering questions long before they are finished being asked. We listen only to respond and be heard, not to learn and to hear. And when we do that, we exclude people like Barb. People for whom communication might be slow and laborious, but is only impossible if we don’t listen. People who teach us “talkers,” as she Barb likes to call us, to slow the !%$@ down and listen – to each other, to ourselves, to nature, to God. Of all of the life-changing lessons that sweet Barb has taught me, that, I think, is my very favorite. Slow the !%$@ down and listen.

We’re listening, Barb. The mic is yours.

elephantautismquilt[1]

{image is an elephant made from a quilt of brightly colored puzzle pieces}

Dear Andrew,

My buddy Jess Wilson from “Diary of a Mom” fame asked my non-verbal Autistic self to weigh in on your latest controversy.

As my tattletale thighs attest, I weigh plenty and am happy to share myself fully as I believe that is precisely what is missing.

It’s like Saxe’s (1873) poem, “The Blindmen and the Elephant” where each blind man is partly in the right as he describes an elephant piece he studies, but all are in the wrong in knowing an elephant.

This autistic pachyderm will expand perceptions by presenting more pieces.

Being from Tennessee, perhaps a quilt is the best way to show another neurology position pieced together from me much of which I retrieved from the scrap pile as others often devalued my strange bits.  Handmade quilts take a long time and that is part of their value.  I type one painstaking letter at a time sewing my words carefully and preserving them for future use.  Like me, this gift is made from new and old pieces. May it blanket as a warm polemic.

In your March 17th, 2014 New Yorker article, “The Reckoning” about the Sandy Hook Killer you wrote, “Both autism and psychopathology entail a lack of empathy. Psychologists, though, distinguish between the ‘cognitive empathy’ deficits of autism (difficulty understanding what emotions are, trouble interpreting other people’s non-verbal signs) and the “emotional empathy’ deficits of psychopathy (lack of concern about hurting other people, an inability to share their feelings).”

I will comment on that one paragraph. Your other 55 paragraphs, I found to be provocative and factual, and I was delighted to harvest a new word – “sclerotic”. I am a collector. Thanks!  (BTW, 56 paragraphs = 28 victims times 2 controversies. Patterns were my first love.)

Cognitive empathy deficits are not part of my untidy truth.  However, it is what you know to be true because it is what you dutifully researched from what is known in science at this time.

In 1968 this same science depicted homosexuality as a psychiatric disorder:
This category is for individuals whose sexual interests are directed primarily toward objects other than people of the opposite sex…” (Page 44 from DSM II)

This mental disorder diagnosis of Sexual Deviation-Homosexuality (302.0) allowed mental health providers to bill insurance and perform “reparative therapy” which is treatment to change a person from a homosexual or bisexual orientation to a “normal” or heterosexual orientation.)

In 1974, homosexuality was removed from the list of mental illnesses.  Scientific breakthrough?  Nope. Gay people kicked up a fuss.

Let the ASD quilting bee begin.

If you want to know more about Autism Spectrum Disorder (ASD), ask a person with ASD.  But, that logic actually brings us to another controversy.  Is it possible for people with severe ASD to communicate logically?  Many think not.

The truth is many like me think well.

Autism is my prism not my prison. I will stitch till my lifeline-typing finger is crippled with overuse to share my reality of intelligence and cognitive empathy.

Justice almost always takes more time than the just expect.

Lucky for us, patience is often an ASD strength. What normals perceive as “waiting”and “wasting time,” we may view as stasis. Like well- seasoned Tibetan monks, we are in no rush. We understand the reality of impermanence. We understand the reality that nothing is as it appears to be. Please, consider here my hypothesis that there are more autistics now because of human evolution. Autism may serve to provide the individual time and space to contemplate and meditate more so than any convent or monastery. Non-verbals  “waste no time”on vows of silence. We simply live it.

Please give our humanity the benefit of the doubt.

After years of toiling with all I am, I can now type with just one hand touching my back for support to help me initiate movement and overcome my apraxia. The National Institute of Health defines apraxia (called dyspraxia if mild) as a neurological disorder characterized by loss of the ability to execute or carry out learned movements despite having the desire and ability to perform them. This includes talking and typing. I also struggle with ataxia, which is characterized by imbalance, unsteady walk and tendency to stumble, problems with fine motor movements, and difficulty positioning in space. I often politely ask my brain to please move my hand to do this or that only to be told, “We’’re sorry due to high autism volume we are not able to answer your call at this time. Please try harder later.”

Andrew, this is the second time I have written about an ASD controversy you sparked. I admire luminous incendiaries like yourself. You are vital for the evolution of humanity.  We autistics are fully human and intend to be a part of such solutions.  Our humanity is too often veiled by blind men who do not see our intelligence and sentience.  This quilt has two sides.

Side One:  Intelligence

I have been fighting this specific mis-perception all my life. Andrew, I don’t look normal. I appear quite messed up and a prime candidate for nothing but pity and patronization, with a sprinkling of repulsion and fear. I am disguised as a poor thinker.

Like many others with ASD, I think well but as my friend and harbinger of ASD truths Emma types, “Language is an awkward way to communicate”.  I argue that is true for everyone but highly challenging for those of us who are autistically wired .  It took me years to think in language. But prior to that my thinking was not faulty it was just not language based. Thinking in language is not efficient for me. I wish I could give you a pretty little fact package about what works so folk like me could get such opportunities and soar socially and academically. Of course, the problem is…it is hard to say in language. Typing makes it way easier, because I can control the speed of each thought and break it down to smaller parts to be better described by letters one peck at a time. Speaking requires a rather unnatural process for me perhaps like you singing a show tune you heard in another language. You may be able to imitate the sounds but the meaning in each mimic is not precise. The best way for me now is to communicate through typing. But still my thinking is not easily translated in to words. Feelings, sensations, visions and knowings that are cleanly processed in my mind don’t fit well into letter symbols. There I said it – or something close.  

In Western culture, significant people live outside of their minds. As the homeless are at a disadvantage because they must directly weather storms, cold, heat, and myriad dangers, those of us who exist invisibly in the conscious dream country of our minds suffer similar prejudices because we hardly exist in the external world and are therefore not censused.

The italic content below is from my August 7th, 2013 blog about your first ASD controversy where readers considered whether or not the world was better off with or without autism.

What inspired me to do this give away of my audio book, “I Might Be You: An Exploration of Autism and Connection was the recent controversy concerning the autism chapter in Andrew Solomon’s artfully researched bestseller Far From the Tree.  (The book took him 10 years to write. I can relate to that type of perseverance even though I suspect Andrew may type with all ten well manicured fingers and not just one autistically weird, nail bitten digit like me, but who am I to judge if he needs extra time.)  Many in our autistic community wish to boycott his book as they find it to be filled with harmful parenting horror stories.   I wrote on that below and have since heard the chapter.   We non-verbal auts often enjoy learning with audio books as we can usually do so under our own steam.  Which is why this giveaway is audio book specific.

Solomon is a master storyteller.  He relays tales of parents in harrowing, sustained pain.  He gifts these real people a voice. These overwhelmed parents are being heard.  I write of the healing power of being heard, here

Below is my comment following Jess Wilson’s “Diary of a Mom” account of this controversy.   The next comment comes from a special education counselor (The kind of special, nobody, I mean NOBODY wants to be).  See Dick run about his trouble with hardness.

          Barb: “it is true autism is hard. i have autism, the hard kind. but i have decided to be up to the challenge as my parents did because there is no other palatable option. andrew solomon is no enemy of those of us who are here with jess to “demystify the condition and to humanize the people behind the label in the public eye” because andrew is genuinely trying to know. so should we. andrew will learn from us and we from him. life is perspective. to live a balanced wholehearted life we are wise to learn how we are perceived so we may better connect with others and each respect who we chose to be. so, i just purchased “far from the tree” to learn more of those perspectives knowing they may be hard to hear. i hope andrew will repay my respect and purchase my audio book, “i might be you: an exploration of autism and connection” so he may learn my hard truths. may we all transform “years of accumulated slights” to the now of empathy and compassion. sometimes hard to hear but listening b

            Dick replies: 
July 12, 2013 at 10:22 pm 

I’m skeptical that anyone can honestly write “i have autism, the hard kind.” I am a 50 y.o. rehabilitation counselor and I work with adults and kids with autism – the hard kind – every day. None can read. None can write. None even know what autism is. THAT is “the hard kind.” I also work with adults and kids that have autism – the not so hard kind – who read and write and drive. But people who have “the hard kind” of autism can’t write about it. They can’t even talk about it.



            Barb comments back to Dick: July 15, 2013 at 10:50 am 

dear dick, it is my hope you will be open to knowing that many of us who are disguised as poor thinkers are in fact more like you than you may choose to believe. we may have a variety of physical and mental challenges confounded by profound difficulties with communication which shroud our humanity. i invite you to please take a few moments to read this link about how some of us with the hard kind have broken through with lots of hard work and sustained focus. thank you for caring. real b
      “a note on how this book was written” http://muleandmuseproductions.com/about-the-book-i-might-be-you/

 I wrote the measured response to Dick above because I am learning we all do better when we know better.  From my hard front row seat to autism, rehabilitation counseling, and special education, I learned that believing one’s students are mentally deficient and not capable of sentient thought much less writing leads to not teaching Dick.  (Oh, did I leave out a comma?  If only I could learn to write…)

Almost 100 percent of my teachers thought that way and treated me accordingly—as a lesser being. It only took one teacher who taught from her heart to my heart to change my reality and course. Andrea Reynolds assumed my value and competence. Then so did I. Others followed suit. Today, I choose to no longer allow myself to be excluded from humanity by such perceptions I do not share.

(END previous blog excerpt)

Andrew, I am not alone.  Many of us with ASD are happy to teach.  To quote my mentor Emma who is 12 (This old dog is all about learning new tricks) who wrote this by saying each letter aloud she pointed to it on a stencil board, “Autism is not what parents want to hear, but I hope that will change as more people get to know someone like me.”

We are all teachers.  My style may sometimes be more ribald than others (a gal’s must take her fun where she can get it) but our message is consistent: It is in our best interest to remember that we are all the same. People are flecks of God. Each God fragment dispersed through space-time has a slightly different shape. One shape is not superior to another. All are necessary to complete the perfect, infinite, God puzzle. To be proud that one “tolerates”diversity is ludicrous. The whole system is the sum of its parts. Be your part. Connect with other parts and the God puzzle is revealed.

Your book, Far from the Tree lay bare the question of whether or not the world is better off with or without autism.

I know that it is better with.

I think autism is a valuable part of human evolution.

Consider the stagnation of our predecessors. Homo erectus, who existed for over a million years with basically only axe- like tools, hunting, and the use of fire. No significant technological, ritual, or symbolic improvements were made until Homo sapiens appeared about one hundred thousand years ago. Homo sapiens had something Homo erectus did not—language, grammatical, articulate, and referential speech. Language changed the world.

Modern humans became the sole survivor of a complex family tree because language allowed consciousness of our pasts, our futures, and ourselves. Innovations promoting surviving and thriving exploded. “Life can only be understood backwards, but it must be lived forwards,”said Soren Kierkegaard.

These days, no human is equipped to process all the sensory and intellectual information available. Information overload is prevalent. Maybe autism is an evolutionary variation kite, flown to see if such a human wiring tweak will better equip us to deal with and process infinite information.

Research confirms that documented cases of autism and related spectrum disorders are increasing at unprecedented rates. Autistic tendencies may enable some humans to better weed out time perceptions and social/emotional/external distractions, which may hamper observations needed for specific problem solving. How often do normals take the time to really touch, smell, taste, hear, and truly observe a seemingly common object or parcel of nature?

The American Psychiatric Association’s Diagnostic and Statistical Manual, fifth Edition (DSM-5) gives criteria for ASD as: deficits in social-emotional reciprocity, non-verbal communicative behaviors, and in developing, maintaining, and understanding relationships.

I contend, many times, autistics revert to isolation by default rather than preference. It is infinitely easier to back away and not try to be included instead of oafishly stepping in and attempting to convey your intent to be a part.

Loneliness is the most predominant side effect of our unique design. Allow me to try and express the magnitude of isolation in people with brains like mine. The bad news is that the beginning, formative years comprise the most mind- exploding confusion and world abandonment that I think a being can physically withstand. We are talking threshold-of- ceasing-to-exist because the internal desire to get off this ride is so intense.

It is fortunate that most suicide methods take considerable coordination and effort, or autistics would be extinct way before genetic engineering becomes popular. Apparently, wishing to die with more repetition than grains of sand does not always do the trick.

I survived but did not thrive until decades later when I eventually found purpose and true friendships through words.

It started six years ago when I gained acceptance from not one, but two neurotypical cohorts. They are not damaged goods, either. Each, about my age, is physically attractive, very educated, and delightful. The purity is that these two buddies connect with me under our own steam. Obligation fuels no part of our bond. They are not paid or service providers for me in any way or tied to my family. Our only roles are to enjoy each other and have each other’’s back (Evolutionarily most beneficial.).

How did this happen? Here is my best guess.

They read my work.

I wrote, “Evolution has not wired all of us to attain such relationships easily. Some humans do not give having friends much thought—it just happens naturally. One top-heavy toddler hugs the tiny neck of another. From there, they battle with sharing and acquire language and exchange it as a limitless commodity.”

Like cheap oil in Dubai, words fuel friendships and that vital product is taken for granted by the indigenous. Not being from the land of cheap words, Autistics have a very hard time making nonpaid friends. But I finally did it at age thirty-six by getting words (and lots of them) out there. Then two beings were able to relate to me in a new way.

My slick words were expensive and time-consuming to excavate. It is hard to find good help in dystopia, but I did. SS (my smiling shrink) helped me drill down and find my crude words. The refinement process took years.

Eventually, my product was ready for market. In Synergy and other publications, I shared my past, humor, dreams, flaws, and interests. The same stuff you normals do on your first friend date. Jessica liked what she read and contacted me for a chat. After a few e-mail correspondences, I was able to establish my footing. I began to understand that she was not seeking something from me —but seeking me. It took time to acclimate. I was incredulous at first. Jessica was a Ph.D. student in educational psychology—same field as SS. I fished, but reeled in no evidence that she wanted to study or treat me. Curious. Surely this gal had many good friends. And Jessica is simply not the gold digger type. I can divine that vein a mile away. What did she want? Should I open the door? After eliminating a series of possible motives, I calculated the worse case scenario was she is another cloyingly pious God Squad activist who believes Hell does not discriminate against mute autistics and is making sure no salvation rock has been left unturned. I did not allow myself to entertain a best-case scenario. So, fortified with my most powerful religious arguments, I met Jessica at SS’ office for a face-to-face so I could communicate with supported typing.

We had a riveting conversation. Turns out religion was a topic, but that may be more my doing since I was prepared to spar. We met like this a couple of times. Jessica never did give me a Watchtower pamphlet, instruct me on how to accept Jesus in my heart, or ask for a donation. We simply began to share aspects of our lives, along with plenty of good food, wine, and music. “Simply,” is an interesting word choice for something that took thirty-six years to happen.

After I answered the door for Jessica, Elizabeth came a knocking. She also visits with no agenda other than mutual interests, affinity, and dare I say it, …friendship. A girl could get used to this and I have. Another friendship followed this one and I see no end in sight as my welcome mat is out. Words don’t fail me now.

My point is science describes aspects of me: “failure of normal back-and-forth conversation, reduced sharing of interests, emotions or affect, abnormalities in eye contact and body language, lack of understanding the use of gestures, facial expressions and non-verbal communication and absence of interests in peers” (DSM-5) without comprehending this elephant understands the tea party and may wish to attend, but navigating the play house is DIFFICULT.

Perhaps, prevalent autistic characteristic, such as “language problems,”” may be the precursors to other forms of valid, consistent human communication, which are faster and more efficient and honest than speech. Please consider that before language became dominant, surely a minority of humans hard-wired for verbal speech existed and were probably also viewed as “different.” Skull remains reveal that these individuals who became known as Homo sapiens even looked different, as their face was flatter, which allowed for articulate speech. These are a couple of the many reasons why I have great reservations about genetic engineering and cloning.

The system of heredity depends on variation. Neurodiversity is more than good – its God.  History has shown that when we start tying to eliminate diversity, nature answers cruelly. Take, for example, the self-important royals who inbred to keep the royal blood pure. How many short- lived, hemophiliac retards with big ears (kidding) did that produce?

Can one imagine a world where humility was bred out? Consider who would clone. It would be those same white folks who now spend thousands of dollars each year on infertility treatments just so little Johnny is like them. Meanwhile, tiny, beautiful babies of color and special needs can’t get adopted to literally save their life. My own incredibly smart and supportive mom would have probably chosen the cloning option if given the choice of that or having a special needs daughter destined to take a lifetime of care and countless resources. Imagine—she could play golf with a younger version of herself. Heaven—until Mom pulled every muscle trying to compete. See, cloning can even result in severe muscle strain.

Normals are often pleased with themselves and think they have a good handle on the past and a sound plan for the future, all the while participating with frenzy in the present. My own SS schedules people, places, events, work, leisure, and even passion in endless back-to-back “time” chunks. Her mind incessantly prioritizes these responsibilities and happenings based on a scale made up by normals. She hurries through or skips countless meals and other life joys in order to accomplish. I, on the other hand, have a lovely lunch every day, followed by a relaxing swim or fulfilling amount of peaceful chill time. I focus on one life concept at a time. For example, this word quilt has been my primary contemplation for near a month. I am not designed for physical or mental juggling. The outer world seems to value harrowing juggling acts. This autistic has a different perspective. Who is happier and closer to God: a napping native with a warm sun, clean ocean, and plenty of tasty trout, or a chainsaw juggler in a business suit with a buzzing cell phone?

I encourage all to discover your own shape, connect with others, and enjoy your lunch. The result will be resplendent and quite worth doing.

{image is a cartoon in which one elephant is handing another a small bouquet of flowers. The first says, “They’re Forget-me-nots.” The other responds, “Duh .. as if I had the option.”}

Side two:  Sentience

Andrew, you defined cognitive empathy as deficits of autism that involve difficulty understanding what emotions are and trouble interpreting other people’s nonverbal signs. Please know my cognitive empathy lets me know that you intended no insult so none was taken.

To show off a little of more of my cognitive empathy please enjoy this excerpt from my latest book.

Begin excerpt:
For the most part, the life I have chosen is manifesting at the rate I choose. Patience is a virtue, but for me it is more like a third arm. I was born with it—most are not. I wield it to help me juggle emotions, creativity, goals, personal interactions, and mindfulness. My boyfriend Jerry has a third arm, too, but Aspergers is the only diagnosis most would give him. Third arms are not transparent. All can see them if they wish, but most do not because they are not expecting to see.

I am designed well for my purpose because my third arm and high pain threshold make me well-equipped to harvest justice as it is a slow, painful processes to farm it. SS (my smiling shrink) was assisting my research of positive and negative liberty for background for this piece, when her wife, Ty, came in crying and asked if we could put our work on hold for a few minutes while she got something off her chest. Now, Ty is a formidable woman. She is ex-military, a tri-athlete, fulltime anesthesiologist, resolute friend to me, and a rock in our community. She is no crybaby. As one may imagine, I am a fantastic listener—much better than SS, despite her pro status because she is always strategizing ways to treat and fix. I literally just listen.

Ty tearfully read an article posted on Facebook by one of her business partners presenting “another position to consider” concerning President Obama’s statement supporting the right for same-sex couples to marry. The author was dismissive of such families and used crude terms to describe those sex lives. Truth be told, it was titillating, but so much is to the sexually parched. Plus, such acts did not seem exclusive to homosexual couples—but I digress. He went on to accuse Obama of reverse evolution because the President’s decision was based in part on how his young daughters perceive families with gay parents as equal. The writer judged divining wisdom from children as ignorant.

I understand why Ty’s feelings were hurt. Belittling the validity of her family is mean. I expect if Jerry and I marry, our family will also be put in some pile other than the IN Box with full rights under the law.

It boils down to justice. For now, us nontypicals must suffer at the hands of inconsiderate masses because the majority does not grant minority equal rights until all other alternatives are shown unpalatable.
So, day after day, I write the bitter truth. Each person who truly hears will find the status quo a little harder to swallow.

Like Ty’s kind, my ASD clan needs access to government. I was skipped over for a free and appropriate public education because even though supported typing was allowed for me, an imprimatur was never given permitting my supported typing to count. I moved on and now make my own education count.

This planting season, I am focused on harvesting my legal rights as a sentient adult. As it stands, my parents are my legal guardians. I can’t enter in binding contracts without their permission. As love has me considering the contract of marriage, I vote for change.
When my parents are gone, folk expect my brothers will take the reins. Well, not if I pull this horse to a dead stop with my own unsupported hands. To be fair, I love my brothers and they have dutifully let me ride on back of their bikes, 4- wheelers, jet skis, mini bikes and horses, but I am grown now and not always going their way.

My parents know I am preparing the fields and working hard to start tipping the scales of justice to include me. I want to marry. I want to have sex. I have no intention of asking permission. I do not want my brothers to be my keepers. The thought infuriates me. And that’s not just my Dutch oven PTSD talking. Why should I be susceptible to their whims? They don’t own me. Or do they? What part of the Old Testament law is our society cherry picking this week concerning rights?

In James Allen’s As A Man Thinketh, he writes “Law, not confusion, is the dominating principle of the universe; justice, not injustice, is the soul and substance of life; and righteousness, not corruption, is the molding and moving force in the spiritual government of the world. This being so, we have but to right ourselves to find that the universe is right.”

Allen further contends, “Circumstances do not make a person, but reveal him.” (We must forgive the sexist language of this 1902 author, but such forgiveness is needed, anyway, for righting ourselves to pick the fruit of justice.)

I embrace my purpose. My autistic circumstances reveal me as no neurotypical, privileged white girl life would. I am just Barb and I am grateful. When I write, it flows from the breeze because it is who I am and what I am here to do. Feelings and ideas funnel through the top of my head and grind down in words. The word drip is slow but rich as I can brew. Best served hot.

End excerpt.

When enough of us embrace our purpose and being part of the solution, eventually, justice prevails and discrimination bails.

And if memory serves as mine does, we are wise not to be too sclerotic and quick to believe everything we think.

Thanks for listening.

Like you, trying to know,

B

Ed note: The above was originally posted on Barb and Lois’s blog, Mule and Muse and published here with their generous permission. Please go check out the blog, buy or borrow the book if you can, and sign up for their newsletter. Their words are always, always worth the wait.

30 thoughts on “listening – barb rentenbach writes to andrew solomon, magic ensues

  1. Barb and Jess
    This has given me goosebumps..and I have only started reading it. In relation to something completely different in my own life right now this phrase literally screamed out at me
    “Justice always takes more time than the just expect”…..
    What is going on in my world ties into acceptance, advocacy. standing up for what one believes in and most of all justice” I will continue to read this piece slowly, over time in the same way it was written.
    I thank you both for sharing this…
    Peace

  2. The phrase “Autism is my prism not my prison” – this alone is enough to change everything for me and my boys. But the rest of the post is so incredibly powerful and important that I need everyone to read this. Thank you Barb for sharing your words and thoughts and life here with us so we can all listen and learn.

  3. Goodness. I’ve only got as far as the first half so far, but “Autism is my prism, not my prison” and “People are flecks of God”…I think I need to come back with a notebook.

  4. I found a new saying for a shirt for my son.. “Autism is my prism not my prison. ” This is an AMAZING statement and I love it!!

  5. I also have to say I agree with Barb and have had some curious looks when I have conveyed the hypothesis ” that there are more autistics now because of human evolution.” I don’t believe this is something we need to fix but rather better understand. I quite often envy my son and how true he is to himself, without worry of judgment. He is an AMAZINGLY WONDERFUL guy and I thank God for him daily. He has added such enriching perspective on the world.. as does Barb. Thank you!

  6. Reblogged this on Spectrum Perspectives and commented:
    April is autism “awareness” month. Knowing “of” autism isn’t enough. Reading about what it “is” from the outside isn’t enough. Postulating, guessing, interpreting what we see, or what we think an autistic person is experiencing isn’t enough. We need autism ACCEPTANCE – to accept that people on the spectrum are “Different, not less”. We non-autistics need to be Autism Explorers – looking to autistic authors/bloggers/facebookers, etc. to discover the ACTUAL experience of autism. We’re on the outside, looking in – let’s engage so we can understand, so we can become partners in the experience.

  7. This has humbled me, changed my thinking, made me hopeful, and even had me thinking back to my childhood classmates. Fantastic! It’s not enough to say but this is just “Sooo much WIN!!!!!”

  8. You know those rare moments where you encounter information, and find yourself changed immediately upon receipt? Reading this piece was one of those moments for me. Magic, indeed. I will be pondering what I learned today for the foreseeable future, and beyond. Thank you to both Barb and Jess!

  9. I read this slowly with many breaks to process. My own ADHD means I often whip through reading and then turn it over and over in my brain until I am ready to consider all of it. New ideas keep hitting me like waves, because Barb’s writing is so rich. I feel like every word is important, while so much of what I read (and really, what I write) is wasteful, repetitive, and could use some editing. It’s refreshing, really. Maybe it’s because Barb takes her time, or maybe it’s because she more carefully chooses her words because they come with more effort.

    As a special education teacher, I am so interested in both Jess’s journey with her daughters, and Barb’s experiences and words. I cannot get enough, and I feel the need to soak it all in. I wonder how I can help unlock the feelings and the thoughts and the sensations inside of my students.

    Thank you for sharing, for allowing us to take the time to listen. And thank you Jess for helping to bring Barb’s words to more of us. We need to hear them. I Might Be You is loaded on my kindle and ready for spring vacation reading…something tells me I won’t be able to put it down.

  10. Jess and especially Barb, thank you so very much Jess for sharing and Barb for writing this. I had to give myself some time at the end of the day to read it all in one sitting, and I am so honored to read these words. It’s like getting a glimpse into the way my daughter might think- Emma’s idea that she doesn’t think in language. THAT really struck me….. I don’t know a better way to explain it. Just that, again, I am honored to be able to read it. Thank you so, so much.

  11. Barb, Jess, and Emma. Thank you. You all have in common that you make me laugh, and most importantly make me think. I presume competence largely because of you.

    Today, I was in a developmental preschool classroom as a favor for another psych observing a little guy for an ASD evaluation when I noticed another little guy in the classroom was all thrown off by my invasion of their space. I am told he already has been identified as being on the spectrum. I recognized the kind of anxiety that made him want to crawl out of his own skin as he sat alone in the corner. Because of you, my teachers, I w presumed confidence. I walked up to him, and kneeled to his level. I said ‘hi buddy, I’m Miss Sara. I know I’m not usually here but I’m just visiting today to help some of your friends, okay?’ He looked up towards me, and replied ‘Miss Sara, Miss Sara, Miss Sara’ in a happy squeally voice. Then he got up, and went about his schedule, no longer afraid. All because I presumed competence, All because of you.

  12. I just read your article and as a mother of a son on the spectrum (whom I will go to my grave advocating for) I write you to inform you that the words of this article has truly made me more inspired to fight harder for my child any every other child who continue to go unnoticed/forgotten in the shadows of ignorance. Thank You from my heart to yours!
    Sincerely
    Kimberly Gammill

  13. Barb and Jess,
    Thank you both so much…Barb for your beautiful words and Jess for bringing them to me. The insights you have shared will forever change the way I teach and speak to autistic children and adults. I have always believed they could understand me on a meaningful level and now I know they do. And I am reminded that we must work to SEE people, and to find ways to ensure all are able to access the world in ways that work best for them. I have also wondered if autism is evolution…I suppose time will tell.

  14. Thank you. I am so glad that I had the time to read this in its entirety. This piece is thoughts provoking. I absolutely love the phrase “Autism is my prism, not prison”. My son thinks and processes at a different level…it doesn’t box him in. Rather, he sees things that we just don’t.

    Again, thank you.

  15. I am so grateful that people like Barb write for us and that people like Jess publish for us. This is fantastic and thought provoking. Thank you both.

  16. So very interesting. I loved the part where she said we are all flecks of God. Each fragment different shape, not superior to another,to complete the perfect infinite God puzzle.

  17. Thank you for your time and effort in putting this together. I feel a connection with what you wrote although I never would have considered the possibility a few short years ago. Our children can sometimes teach us more than any paid professional or educational system. Please keep translating your thoughts into this wealth of insight.

  18. Barb, I have read your book. My son has listened to the audio version. Much of what you expressed here I am hearing for the second or third time, but I learn more every time I come across your words. I understand that words are not your first language, so thank you, so very much for your words.

  19. I am only one third of the way through this post, but need to comment that I became so totally absorbed in reading it that I completely forgot about the eggs I was cooking for dyeing, that are now beyond recovering. Oh well. Can’t wait to read Barb’s book.

  20. Thank you Jess, and Barb. I haven’t been able to read all of this yet, as I’m at work and have spent way more time reading your blog than working lately as it is. I just discovered your blog and have been engrossed with it. My little boy has an obvious speech delay and some other non-typical behaviors. He is in speech therapy now and will be seeing a pediatric developmental specialist next month for an autism evaluation. He won’t turn 3 for another few months. I’ve been so scared of what it all means. Your blog, and seeing all that Barb is (which is amazing), gives me hope. I know that whatever we face, it will be ok. He will always be my little,loving boy, and we don’t need to be scared. We just need to learn along with him.

  21. Dear Barb,

    I have been slow to respond to this because it warranted more time and thought than I’ve had; I’m one of the chainsaw-juggling types, and I’ve been rushing through life the way I do. But I have read this in chunks and with feeling and I am moved by your description of your own life, and grateful for the generous way you’ve responded to my writing, even when you disagree with it. You are right that I intended no offense, and I appreciate your acknowledging that.

    I should begin by saying that I don’t think autistic lives are “less than” non-autistic lives. But I do think they are different from non-autistic lives. I would never devalue the achievements of autistic people. I doubt the computer on which I’m typing this message (and which I rely on for my output as a writer) would exist if not for the contributions of people with autism. And I think that if we “cured” all of autism, our doing so would impoverish the world.

    I do have some sympathy with the person you quote as suggesting that people with “the hard kind” of autism are the ones who have no ability to use language and very little ability to communicate at all. I’ve met and spent time with such people. It may be that they cannot communicate because they have never received adequate supports–but many of those I’ve spent time with have been given every support their parents or caretakers could find, and they remain uncommunicative. Many are in evident pain. I don’t know whether they could all learn to express themselves as you express yourself. But I have seen autism that is characterized by suffering. So I’d never want to see autism eliminated from the range of human experience–but I’d like to see that suffering assuaged. And some of it cannot be assuaged by any means we now have available. I worry about those people, and wonder how we can fight for a more accepting society without abandoning the people whose pain is in fact endemic–impossible to alleviate through a more humane social system.

    I have also spent time with people with autism who seem to have a hard time understanding the interior emotional lives of others, which is what I have described as a deficit in cognitive empathy. They often have tremendous other skills or assets. But they need quite a bit of explaining about how other people are feeling, or about how their behavior makes other people feel. They can sometimes learn to recognize patterns in these domains, and can develop an intellectual, analytic ability to achieve appropriate responses to other people’s psychic states, but they don’t recognize them as readily as many non-autistic people are able to.

    I emphasize in my original piece, and would emphasize again here, that I don’t think autistic people lack emotional empathy. I think that once they understand someone else’s emotions, they are concerned, engaged, present.

    I now need to say very clearly that I also don’t think autism is a monolith. Some autistic people have these particular challenges; some don’t. Some autistic people are nice and some are not-so-nice. Some are social enough to want fluent communication; you reveal a profound sociability not only in what you’ve said here, but also in the impressive, admirable, amazing work you put into saying it. Watching that short video of you typing one letter at a time is deeply moving. The fact that you did that in part to communicate with me is a compliment I take entirely to heart, and I thank you for it.

    So I don’t think that all autistic people are entirely bereft of cognitive empathy. I think some substantial number of autistic people have less cognitive empathy than a typical group of non-autistic people. And I think many of those same people have remarkable skills.

    Look, how’s this for a parallel, since you’ve talked about gay issues and drawn the parallel: many gay people are bad at sports. I’d guess that if you took an average of the athletic ability of all the gay men in America and compared it to a random sample of straight men, you’d find the gay men are less likely to excel on the playing field. Now, we have any number of Olympic athletes who are gay; we have the first openly gay pro football player waiting to be drafted; we have a gay culture that has embraced the striving for bodily perfection. I wouldn’t say that gay people can never do sports. But if someone said that many gay people lack athletic grace and body confidence, I’d have to acknowledge that that is true. And I am nonetheless proud to be gay and believe gay people have a million other things to offer.

    I can speak only in response to my experience with people with autism, and to published writing on the topic. I believe that many autistic people have communication issues in both receptive and expressive communication–and a lack of receptive communication skills tends to manifest in compromised cognitive empathy. Some other autistic people don’t have those problems. And these problems aren’t shameful ones. They aren’t necessarily even problems.

    I have been fearful of the rhetoric that says gay lives are the same as straight ones. They should be treated equally and they have many points of equivalence, but they are not identical. My children, growing up with two dads, are having a subtly different experience of life from most of their peers. It’s not a worse experience, but it’s different. There are things two men can offer than a man and a woman can’t; but there are things a man and a woman can offer that two men can’t. For political purposes, claims of equivalence are useful, but for purpose of understanding the human condition, they stand in the way of coherence.

    Adam Lanza did not murder school children because he was autistic. We’re all clear about that. But I continue to believe that some of his autistic tendencies interacted with his psychopathy. I suffer from clinical depression, for which I am medicated. My gay issues and my depression also interact; anyone who has multiple qualities has them interacting, and both the good and the bad that each of us do reflects the various components of our character and personality. Some people’s autism has interacted with their immense kindness or great brilliance to wonderful effect. Adam’s interacted with his damaged mind and the ultimate effect was horrific. To consider someone who has a diagnosis and not consider the diagnosis is to do by sloppy.

    This has been a long journey for me, Barb. I readily accept your assertions of pleasure in your own life, and I see clear evidence of your impressive mind and heart. I am grateful to you for keeping this dialogue open. I meant no harm and mean no harm. Indeed, I have meant well, as well as I can, and so have you, and I will always welcome your thoughts, your ideas, your friendship.

    With affection,

    Andrew

    • Andrew,

      From the bottom of my heart, I thank you for this thoughtful response. As a fellow chain saw juggler, I very much appreciate the effort that it took to dedicate your time, attention and emotional energy to continuing the conversation.

      I am by no means attempting to co-opt the discussion between you and Barb, but since it’s public, and heck, it’s my blog – lol – I am going to take the liberty of responding to a particular part of your comment.

      You assert that a lack of athleticism is common among gay men in the United States. Whether or not that’s remotely empirically true I won’t argue here. What I will focus on, however, is this …

      “I wouldn’t say that gay people can never do sports. But if someone said that many gay people lack athletic grace and body confidence, I’d have to acknowledge that that is true. And I am nonetheless proud to be gay and believe gay people have a million other things to offer.”

      You asked how it was for a parallel and I’d argue that, with all due respect, it’s pretty bad. ;). Firstly, unlike empathy, athleticism is not one of the core defining traits of humanity nor one whose absence could be used, no matter how wrong-headedly, to draw parallels to sociopathy or to negate or dismiss the inherent sentience of a group of human beings.

      However, accepting the parallel for the sake of the conversation, let’s continue to draw it here ..

      This was the line in your original article to which I initially reacted:

      “Both autism and psychopathy entail a lack of empathy.”

      It doesn’t say, “Many autistic people lack …” It says that autism entails a lack of empathy. Period. Of course you went on to qualify what you meant by empathy (which is another issue altogether on which I think you know my stance by now), but nonetheless, the original sentence did not say “many” or even “most” it said, “autism entails ..”

      The parallel would read, “homosexuality in males entails a lack of athletic ability.”

      While it may not be offensive to you as a gay man who happens to not be much of a sportsman, I find the sentence absurd and I’d be shocked if others, like, say, the many gay Olympiads or football or basketball stars who you mentioned didn’t have a very different reaction to it. More over, I find its consequences, even if we’re only talking about athletic ability and not empathy (cognitive, emotional, or otherwise), quite frightening. If it becomes accepted that gay men aren’t athletic, then we stop offering sports as an option for gay boys because, well, we know that they’re not going to excel at them. Because it says right there in that magazine, written by that celebrated and very well-respected author, that male homosexuality entails a lack of athletic ability. We both know that that’s how the Zeitgeist is born and bred. On every website and every tv show on which you appeared as an expert witness, the unassailability of your words grew. And parents and teachers and everyone with whom autistic people interact every day began to integrate, or solidify, the idea that gay guys just plain aren’t good at sports. Well, ya know, except for the few Jason Collinses of the world, but what are the odds that your kid is Jason Collins?

      That’s where I’m stuck. In the proclamation, intentional or otherwise, that those autistic people like Barb, like my daughter, and like so many others who have written here, who DO experience a full spectrum of empathy, even if different and / or differently expressed than the neurotypical population, are the exception to something that is only a rule because we’ve written that it is.

      Again, I thank you so much for investing in this. What we say here matters. What you say everywhere, as an extremely high-profile and respected journalist, becomes accepted thought. I know that you consider your words carefully, and I fervently hope that you will also consider mine along with Barb’s and everyone else’s here as you move forward.

      Warmly and gratefully,

      Jess

      • dear a, thank you for your slow response. i treasure the power of slowness. i am pecking out my reply with your sports analogy in mind despite sweet jess’ critique: “athleticism is not one of the core defining traits of humanity”. jess is clearly not from the south east. shooting for a productive end to autism awareness month b

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