Tag Archives: prejudice

The Horrifying Events that Changed A Young Man’s Life

There’s a young man, his name is Reginald.  Everyone calls him Neli.  He was on the high school wrestling team, wore a key on a chain around his neck, liked to hold three playing cards, loved his hoodie, repeated “television and movie lines ” and carried a “string that he runs through his fingers.” He was described as being shy and he liked going to his local library, which was two miles from his home.  But one day none of that mattered.  One day someone saw Neli sitting on the grass outside the library waiting for it to open.  They called the police, reporting a “suspicious male, wearing a hoodie, possibly in possession of a gun.

Neli is black.

Neli is also Autistic.

All the schools within a few miles of the library “went on lockdown.”  SWAT teams were called in.  That’s at least five schools, though one report said it was eight.  Five schools.  Eight schools.  Lock down.  SWAT team.  All because an anonymous source said they saw someone suspicious sitting outside a library.

Suspicious could mean any number of things.  Maybe it means someone who moves differently, keeps their head down, stares at their feet, doesn’t look you in the eye when you speak to them or doesn’t answer you at all when you ask them a question.  Maybe they rock back and forth as they stand or sit, maybe it means they run a piece of string through their fingers or maybe they twirl it around and around the way my daughter does.

Neli was found, frisked and was unarmed.  This is where the story should have ended.  It is at this point that the situation should have been diffused.  This is where the person who had the ability to calm things down could have, but chose not to.  Maybe a parent, teacher, someone in the community who knew him, who could have vouched for him might have stepped in.  Except the school resource officer who approached Neli and frisked him, did know him or at least had seen him at his high school.  Whatever he knew or didn’t know wasn’t helpful as Neli’s life was about to get much, much worse.  Neli was forced down over the hood of a car and told he was being taken in.

According to one report Neli cried, “I didn’t do anything wrong!” The arresting officer replied, “You don’t have to – Welcome to Stafford County.”  Then he held a gun to Neli’s head and said, “I will blow your head off, nigger.” Neli fought back and in doing so the officer was hurt.

The jury deliberated for three days, found Neli guilty of “assaulting a police officer among other charges” and recommended a sentence of ten and a half years.

Ten and a half years.

The judge disagreed and sentenced Reginald Latson to two years in prison with time served.  Except Reginald had done nothing wrong.  Except that ONE YEAR in prison for seeming “suspicious” to someone is not justice.

“Suspicious” could mean someone who utters lines from a favorite movie or says something that is considered out of context or not relevant to the conversation.  Or maybe suspicious means “not white” and when combined with any of these other things this results in people imagining there’s a weapon as well.  Or maybe not being white is all it takes.  But one thing is certain, being viewed “suspicious” and black and Autistic in today’s world can get you locked up, sentenced by a jury of your peers to ten and a half years, put in solitary confinement for most of your time in prison, and when you’re broken, when you give up the will to live and try to kill yourself, it’s enough reason to put you in a straight jacket, restrain you for hours, hours in a chair, and then slap you with another charge to make sure you never get out of prison.

The Bazelon Center wrote before sentencing last week:

 This counterproductive and inhumane cycle continues with charges Latson is scheduled to face this week stemming from an altercation with a prison guard that occurred when he was being moved to a crisis cell while in psychiatric crisis and suicidal.  There was no serious injury to anyone in this incident other than Latson, who was shot with a Taser and bound for hours in a restraint chair.  Nonetheless, a new felony prosecution was initiated.

As I write this Neli has been sentenced to another six months in prison.  This is beyond unacceptable.  Neli should never have been charged to begin with.  None of this should have happened.  But it did.

A massive number of people have been working hard to gain Neli’s release.  At this moment it could not be easier to do something that could help.  If you only have a moment, sign this petition that my friend Kerima Cevik of the blog Intersected started.

Please.  It literally takes less than 60 seconds to add your signature to this petition.

Grant a pardon to Reginald Cornelius “Neli” Latson

If you have more time, please contact the Governor’s office directly Phone: 804-786-2211; via email by clicking here or on Twitter @GovernorVA and add your voice to thousands of others.

Neli Latson before his arrest

Neli Latson before his arrest

“Mistaken Beliefs People Have”

I asked Emma what she wanted to write about this afternoon during her writing session.  She typed, “Deconstructing the mistaken beliefs people have.”

I encouraged her to continue and asked what she was thinking of specifically.  She typed, “Mostly what people think they understand there cannot be, when talking about autism, creating lots of bad ideas that attract unoriginal therapies we must put up with.”

“Wow!  Keep going,” I urged.

“Actors playing roles the audience greets with enthusiasm, but an autistic person who doesn’t speak as expected, or at all, is booed off stages throughout the world.”

“Such a great point,” I said.

Emma typed, “The people of this world need to be exposed to difference and then shown compassion for their ignorance and limited thinking.”

She smiled and then typed, “Put it on the blog!”

And so I am.

Austin1

Choice

I haven’t felt like blogging lately.  I’m busy.   Emma is no longer going to school and we have a number of exciting projects we’re working on, in addition to the ones she is working on solo.  We are covering all the subjects any school would cover, only we are doing it according to what Emma is most interested in.  So instead of saying, this month we will read _________, we say, “Here are some books I thought might be interesting, do any of these interest you?”  And then if they don’t we keep looking, asking and seeing what clicks.

At the moment we are reading Shakespeare’s Romeo and Juliet (thank you K.), we’ll begin pre-algebra in another month or so, are studying ancient civilizations beginning with our earliest known ancestor (thank you Mom), learning about chemistry (thank you Dr. C), have a variety of craft projects, writing projects, music projects, and that doesn’t even begin to cover all the other things that come up in any given day.

In addition to all of that, German (Emma’s very specific and insistent request) is coming along nicely though we are very much beginners, so all you German speakers, please do not start commenting in German and expect a response, unless it’s something like – Meine Tochter trinkt Apfelsaft, aber ich will Wasser, bitte.  Yeah, I just wrote that…. like a BOSS!  You have no idea how proud I am of that sentence, particularly as two months ago I couldn’t have put more than three of those words together.  And even though this was Emma’s idea, I’m (obviously) enjoying myself enormously.  (Oh you have no idea!)

But the point of this post was not to itemize the topics we are learning about or to show off my German (!), but instead was to say, yes, we are busy and so that makes blogging more difficult to get to, but the bigger point, the point I was thinking of when I sat down to write this evening, is this:  I don’t have to blog if I don’t want to.  I can just stop blogging.  In fact, if I felt like it, I could say – I don’t feel like doing this anymore and that would be the end of it. But my daughter doesn’t get to just stop and walk away from her neurology and how that is perceived by the majority of people out there.

So here I am, because this is about countering all the negativity that abounds when it comes to autism.  There is stigma and prejudice and yes, oppression and people saying and doing all kinds of things to Autistic people that are horrifying and appalling and the vast majority of people in this world see nothing wrong with that.  We have to stand up and say, no.  This isn’t right.  People are being beaten down, literally, beaten, threatened, murdered and it’s not okay.  It isn’t.  Our children are growing up in a world where autism is synonymous with all kinds of awful ideas and beliefs that hurt them.

Autistic people are being shouted down, ignored, trampled on, gas-lighted, abused, treated with contempt and some fear for their lives.  Non-speaking Autistic people are routinely treated as though they are incapable of thought and if they type, they are faced with suspicion, doubt and ridicule.  Speaking Autistic people are presumed incapable of understanding others, or believed to be using their neurology to get away with something.  If they speak out in anger they are told they are being unreasonable and that this is yet another example of their neurology.   I’ve seen non autistic people accuse Autistic people of being unable to understand the nuances of an argument because they didn’t like what the Autistic person said.  One woman wrote to an Autistic friend, “Oh, you’re autistic, now I understand why you said that awful thing about that poor woman.”  Seriously.  WTF?

The intolerance some non-autistic people show those who are not like them is staggering and horrifying.  The prejudice that is out in the world is rampant and everywhere.  So as busy as I am, as much as I don’t feel like blogging these days, my daughter doesn’t get to take the day off.  She doesn’t get to say –  I don’t feel like being treated badly or differently or as though I’m not capable of understanding.  I don’t really feel like hearing what that rude person just said about me right in front of me.  She has no choice.  And that’s what this post is about.  Some of us have a choice and others do not.

My daughter does not.

Em!

The Battle…

“It’s all well and good for higher functioning people who have autism to talk about how unique and precious their lives are and how important it is for everyone to accept their differences, but for families who are dealing with low functioning individuals, this is not their experience.   Those families are in an ongoing battle.”  

The above is a version of a comment I’ve read countless times over the years.

Aside from the curious conflation of the first part of the sentence discussing Autistic people’s sense of themselves, to the last part, which discusses the family’s point of view, as though the “low functioning” individual is incapable of having a point of view, there is no point arguing with anyone about their lived experience. However, do not make your experience mine.  This is NOT my experience of my child.  This is NOT my family’s experience.  This is not the experience of many, many families I know.  And do not assume this is my daughter’s experience either.  Just because this is the way you view your child or sibling or relative or the person you know, does not mean that is their experience of the world or their family member’s experience.

I do not assume that because I choose to celebrate my daughter, every family and every Autistic person will agree or feel the same.  Nothing is as simple as any one-word descriptor.  The ongoing battle I find myself in is with the inaccurate information about autism and Autistic people.  The ongoing battle is not my daughter’s neurology, it’s the misperceptions people have that they then apply to my daughter.  The ongoing battle is not about her at all, it’s about functioning labels, what people continue to say and believe autism means, how people view disability, the stigma attached and how people fear, reject and punish what they do not understand.

That quote?  That is exactly what I am battling – the idea that because someone cannot use spoken language, they do not have an experience of the world, the misconception that if someone cannot interact with another person in a way the majority of the population can understand or recognize, it means they are less than, unworthy, and therefore excluded.  Exclusion is the battle.  Non-acceptance is the battle.  Intolerance is the battle.  Hatred is the battle.  Prejudice is the battle.  Discrimination is the battle.  Misinformation, inequality, superiority, arrogance, ignorance, and all the ways in which people then behave because they believe these things and all the things they tell themselves that lead to any of the above being acted upon, that’s the battle.

USA-in-chains-610x400

Homeschooling, Unschooling…

We are homeschooling, or unschooling or…  I actually don’t know how these terms are defined and haven’t had time to do the research necessary to speak about any of this with any authority, let alone knowledge.  In fact “time” and what that means has kind of blown up in our faces as there never seems to be enough of it.  Richard and I are scrambling to make this work, while making jokes about how many clones we would need to do so, if cloning were an actual thing.  All of this is very new and we have not fallen into a routine yet.  I guess the best description of what we are doing at the moment is – winging it.  We are winging it, though this will change as time goes on, we think.  We hope.  We expect.  What I can say is that Richard asked Emma what part of history she was interested in learning and she chose ancient Egypt and ancient Rome.  This then led to several lessons on the Druids.  Who knows where all of this will lead next!

Meanwhile, Emma and I have embarked on the exciting adventure known as the German language, as per Emma’s request.  We had a particularly hilarious conversation a few weeks ago when Emma first brought up her interest in learning German.  I was somewhat incredulous and kept saying things like “Really?”  and “Are you sure you want to learn German?”  and “What about Spanish or French?”  But no, Emma was not to be swayed, so German it is.  And guess what?  It is SO much FUN!!  We are using a couple of different programs, one is Duolingo, which was recommended by a couple of people.  It’s a free online language program.  Did you know all nouns in German are capitalized?  Why?  Who knows, lots of theories, but there is no one answer as to why, that everyone agrees with.

In addition Emma is working on several writing projects.  One is a chapter idea, in which we will write alternating chapters.  Emma wrote, “How about starting on what you presumed parenting would be before I was born.”  I said, “Can you ask me questions, things you want to know?”  Emma wrote, “Very happy to ask.”  I said, “And what will your chapter be about?”  Emma wrote, “What I presumed the world would be like when I was a baby.”  I cannot wait to hear what she has to say about that!

We continue to make our way through Malala’s autobiography, I am Malala about the Pakistani girl who fought for her right to have the same education as boys and was shot by the Taliban.  This has led to some terrific discussions about advocating for one’s rights, oppression, prejudice, violence, silencing, education, and the lack of.  Recently Emma wrote, “Her life is unlike mine.”  (Referring to Malala.)  “But the oppression is similar to what I have experienced.”

While I continue to go through periods of abject terror at the thought of what we have undertaken, these moments are tempered with the excitement and joy I feel knowing that pulling Emma from school was by far the best thing for her.  She is ecstatic and the marked change in her anxiety and stress levels makes all of us very, very happy.

Emma chose this image for today's post.

Emma chose this image for today’s post.

An Argument Against Pathologizing Autism – What Others Had to Say

In yesterday’s blog post I asked for thoughts regarding the pathologizing language that dominates most conversations about autism and those who are Autistic.   I received some terrific responses both here, through email and on Emma’s Hope Book Facebook page.  I also asked Emma for her thoughts, which she very patiently gave me and generously said I could post here.

Emma wrote, “Deciding autism is a medical condition eases the minds of those who profit from it.”

A couple of great links were sent to things that have been written on the topic or related topics.  This, from the Zur Institute entitled:  DSM: Diagnosing for Status and Money, focusses on the DSM and argues, “Historically, many clinicians have been unaware that the DSM is more political than scientific, that there is little agreement among professionals regarding the meaning of vaguely defined terms, and that it includes only scant empirical data.”

Another link sent was this one, Time to let go of the medical model by Jarrod Marrinon, which does not speak specifically about autism, but is certainly still relevant.

And this link from Nick Walker’s blog, Five Steps Toward Autism Acceptance is terrific with the first step being, “De-pathologize autism and Autistic people.  This, in particular, stood out, “Blind people, Deaf people, and many other disabled people get the services and accommodations they need without being labeled as having mental disorders. We don’t have to call autism a disorder or a disease to acknowledge that Autistic people are disabled and can require accommodations.”

Nick’s words were similar to what Emma wrote when I asked, “What do you say to people who need support and assistance in their daily life?”

“Why should they have to fight anyone to receive the help they need to live?”

I said, “Well, in an ideal world they wouldn’t need to, but some say that there is only so much money and available resources, so people need to prove that they need the help more than others.  In effect they are being forced to compete for the money that’s been allocated.

Emma wrote, “This sounds like an excuse so that people who do not need help can feel better about how others are treated.”

David wrote, “The obsession with behavior as the be-all-end-all of autism “science” and “treatment” is a superficial distraction and a formula for spectacular failure in addressing the underlying realities – both impairments and abilities alike – which Autistics experience and must cope with every minute of every day. The temptation to pathologize and treat behavior for its own sake is dangerously misleading and utterly beside the point. That boilerplate approach to autism HAS GOT TO GO.”

Toddynho wrote, “why pathologizing autism is harmful”

Compare and contrast the life experiences of LGBT people in contexts where homosexuality is pathologized and in contexts where it is not.

“Are there any studies showing the direct links to pathology language and harm and abuse of the people who are being pathologized?”

To me, it’s self-evident and obvious that groups that are pathologized on the basis of their way of being are harmed and abused in consequence.

“If we do not pathologize autism how will the people who require assistance receive it?”

On a massive, massive scale, the adult autistics who require assistance are either receiving no assistance whatsoever, or the meager assistance being received is grossly inadequate if not downright harmful.”

Toddynho goes on to say, “What we have is a society that is pervasively pathological. Addressing the most acute societal pathologies will improve things for autistic people broadly much more and much faster than any kind of autism-specific “assistance” strategies ever will — and moreover will make things a lot better for most non-autistic people too.”

Gregg wrote, “Its a false logic really. There is nothing inherent to medical model understandings of Autism that enables support. Just the opposite really Its well documented that social model understandings enable supports that are far more useful to autistic people. I see no value in pathologizing Autism except to the industry that has been built up trying to take advantage of parents of Autistic kids.”

I believe the medical model, which is the model used in almost every university and by most autism professionals does tremendous damage to the very people they are intent on “helping”.  To repeat what Toddynho wrote, “…it’s self-evident and obvious that groups that are pathologized on the basis of their way of being are harmed and abused in consequence.”

“Do you think pathologizing language is harmful?” I asked Emma.

Emma wrote, “Justifying decisions to ignore those who need help is not reason to make people feel ashamed of their existence.  People need encouragement to do good.  There will always be some who cannot, but this is not a good reason for everyone else to stop helping each other.”

 

From: ukdisabilityhistorymonth.com

From: ukdisabilityhistorymonth.com

 

Your Child’s Been Diagnosed. Now What?

I always think I’ve written something already about any given topic only to realize there is more to add.  So it was the other day when asked about advice for a parent whose child was just diagnosed with autism.  This is a question that comes up often and always when asked I hesitate and here’s why.  For every child that might respond to various “interventions” the way my daughter did, there will be countless others who will not.  The therapy may be worse or better.  The child may have different sensory issues, they may be voracious readers, hyperlexic or they may not be able to see the printed word because of visual issues, the letters may swim on the page until a different background is found or some other tweak is done, which allows everything to stay still.

There may be auditory issues that my daughter does not share, tactile, physical issues and the list goes on.  So what to do?  How does a parent wade through all the opinions?  How do you find a way to quell your fear, respect your child, ignore that list of all that’s wrong and find the things that will help your child flourish?

For me it boils down to two essentials.  The first is to presume my child competent.  I’ve written about this concept a great deal, but here are a few posts which talk about what that means – ‘here‘, ‘here‘, ‘here‘ and ‘here‘.  Presuming competence is very much a work in progress.  What I once presumed as “competent” my daughter has shown me didn’t go nearly far enough.  We do the best we can with the information we have.  But anything intended to “help” my daughter, anyone who is going to be spending time with her, must understand the concept and be committed to putting it into action.  This includes, speaking to her and not about her in her presence.  It means, even if the child shows no sign of understanding, even if the child has no spoken language and has never written a single word, we assume they can understand more than their bodies and gestures and utterances indicate.

Presuming competence has evolved for me and is helped by keeping my fear, judgment and assumptions checked at the door.  I cannot presume my daughter capable if I am simultaneously engaged in a running list of all she’s doing wrong.  I cannot practice a presumption of competence if every interaction I have with her is really an ongoing test where I’m insisting she prove herself to me.  Presuming competence is a life long practice and it is has far-reaching implications for not just my daughter, but all human beings I come into contact with.

Presuming competence is key, without doing this, everything else I do, no matter how great my intentions, will fall flat.  I have to believe in my kid.  It means that I speak to my child the same way I would speak to any child their age.  It means I approach my child believing in their ability to learn.  It means I believe they can and will learn.  It means they will communicate, I just have to find the best way to support them so that they can and it may not be with spoken language.  It means any therapy, no matter how popular, must be based in presuming my child competent, respecting my child’s process and treating them with the same respect I would insist on for anyone coming into contact with my non autistic child.  It means I have to do the inner work regarding what I believe, notions of should and shouldn’t, entitlement, prejudices, and whatever ideas I may have about my child and who they should be.  It means I approach my child with love, consideration, respect and curiosity.

I have come to believe that services, those services that everyone talks about and that are centered on our children, should include services for parents.  Early intervention for parents is crucial and much needed.  We parents are often in greater need of help and support than our children.  Good quality respite care, therapy for us, the parents, designed to help us cope and sort through our messy emotions so that we are in a better position to be there for our children.  I needed support from parents who’ve traveled the path I now found myself on.  No parent should ever feel the kind of fear I once felt.  Which means we have to change the current conversation surrounding autism if we are going to help our children.  No one is helped by having their every flaw (which is completely subjective, by the way,) scrutinized, both publicly and privately.  There are ways to get support and the help we and our kids need without demonizing our children and talking about them in ways we would never allow people to speak about our non autistic children.

Which brings me to the second essential thing – Autistic people.  It is imperative that all parents be given a list of blogs written by Autistic people who are describing their experience of the world.  This has to be essential reading while we figure out a way to put into place advisory programs made up of Autistic adults who are able to help parents understand their children.  These must be paid positions just as all other people involved with early intervention are paid.

We need mentorship programs of Autistic people mentoring our kids AND mentorship programs where our Autistic kids are mentoring younger Autistic and non Autistic kids.  One of the most valuable relationships my daughter currently has is with a little boy who shows no signs of being Autistic himself.  But they enjoy being together and the boy’s parents encourage their relationship. An inclusive society is key as we move forward.

On the Resources page of this blog I’ve put together a fairly extensive list, beginning with non-speaking Autistic people’s blogs.  I am always adding to this list.  I encourage all parents to start clicking on those blogs, find the ones that resonate and speak to you and follow them.  Start commenting on them, reach out to others who share your child’s neurology, develop relationships.  Listen and learn.  You will learn more from doing this than anything I learned in the half-dozen years I spent listening and reading non autistic people’s opinions.

And finally this is a short list of what I consider essential reading/viewing for anyone who has an Autistic child.

Wretches and Jabberers
Ido in Autismland
Intense World Theory of Autism

Emma and Teddy

Emma and Teddy

Emma, Barb Rentenbach and Lois Prislovsky

Emma, Barb Rentenbach and Lois Prislovsky

Emma, Mark Utter and Ibby at the ICI Conference - July, 2013

Emma, Mark Utter and Ibby at the ICI Conference – July, 2013

Emma and Laura

Emma and Laura

Emma and Ibby

Emma and Ibby

Larry Bissonette takes Emma's photograph

Larry Bissonette takes Emma’s photograph

Emma and Henry

Emma and Henry

The YouTube Video of Ari Ne’eman and Emma Zurcher-Long

My fabulous husband, Richard Long, has edited the videos of Ari’ Ne’eman’s and Emma Zurcher-Long’s presentation April 2nd at CoNGO (The Conference of Non-Governmental Organizations in Consultative Relationship with the United Nations).   

As Richard edited Ari’s terrific speech, Emma was in the room looking at the iPhoto library I keep on my computer, which is near the computer Richard was editing on.  At one point Ari describes the Autism Speaks video when a mother describes (in front of her non-speaking autistic daughter, who attempts to hug her mother several times as she talks) how she thought about driving off the George Washington Bridge with her autistic daughter strapped into the back seat, but doesn’t, for the sake of her other child who is not autistic.  As Richard had taken a still shot of Ari just at that moment, he needed to edit out the pause that was caused by the still shot and so had to repeat this portion of the video over and over and over.

Emma and I have discussed this video before and though I’ve not shown it to her I wondered whether she was ever in the room when either Richard or I watched it. By  the fourth edit of that particular section, I looked over at my daughter who showed no outward sign of upset and whispered, “Emmy, is this upsetting you?”  (I know, talk about asking the obvious…)

I am painfully aware that  by writing about this I open myself up to all kinds of judgement and criticism, but I believe my insensitivity and slow response is an excellent example of the general malaise society has regarding messages like this one that Ari discusses and that are so cavalierly displayed with regularity not only by Autism Speaks, but a great many organizations and autism experts, which are then repeated in the media.  If none of us are able to admit ignorance and our less than ideal reactions, but only point fingers at others, there will be no conversation and little will change.  So I’m willing to reluctantly admit that it took having that section on repeat before it occurred to me to get my intensely sensitive daughter out of the room to discuss the Autism Speaks video in more detail.

This idea that our children and people (of all neurologies) hear these things, but because those who cannot communicate through spoken language are therefore thought to not be able to understand what is being said, is one of the more destructive assumptions made.  And what about those who do speak, are their feelings not important?  These kinds of messages, stated both publicly and privately without thought of the impact this has, encourages prejudice and intolerance, focuses on the suffering, not of the child, but of the parent because of the child, only fuels anger and fear.  Meanwhile Autistic people’s feelings are ignored, their response and reactions to such messages are considered, if at all, of little importance.

“Come Emma, let’s go in the other room.”  I suggested.  Once outside I asked Emma if she wanted to discuss the video Ari was referring to.  Emma wrote, “The video has a mom who is lost and cannot rationalize hope.”  Then a little later Emma wrote, “Autistic people are not viewed as able beings, this view makes us suffer.”  Read that again –

“Autistic people are not viewed as able beings, this view makes us suffer.”

After Ari’s terrific talk, Emma and I were introduced.  Watch Emma writing her final sentence regarding autism and acceptance, which says it all…

“Self-Knowledge Avails Us Nothing”

There are things I forget to talk about with my daughter.  Things that someone will mention or I’m reminded of in some other context and suddenly I’ll think – Gosh, why haven’t I discussed this with her?  These are things a parent would typically talk to their child about, but that because my daughter cannot easily communicate her thoughts I, without meaning to, do not immediately think to talk about with her.  This is the impact my limiting ideas about language and not being able to communicate through spoken language have on my daughter.  It doesn’t always occur to me to discuss with her a great many things until I am reminded.   Out of respect for my daughter I am keeping this post purposefully vague.

I am moving along here, learning as I go and continue to make a great many mistakes.  I have never deluded myself into believing the – making mistakes – part will end, the most I can hope for is that I won’t continue to make the same mistakes, but even so, I do.  I seem to need to repeat the same lesson many times before I am able to make lasting change.  It is a mistake to believe non Autistic neurology does not have trouble with transitions, generalizing information, learning something taught and immediately changing behavior to demonstrate this knowledge.  I will often know something, yet it will take many attempts before I am able to put that knowledge into practice.  You could say that my actions lag way behind what I know or believe.

In the 12 step rooms there is a saying – “self-knowledge avails us nothing.”  What is meant by this is that we can intellectually know something and yet that knowledge does not produce a change in the way we behave.  The only way to change is by doing something differently.  How easy that sounds and yet, look around, people have struggled with this since the beginning of mankind.  Addiction is the obvious example, but there are other, far more subtle things that are great examples of how we want to do something – eat better, exercise, be polite, more friendly, etc –  we know it would be better if we did whatever it was, only to find ourselves unable to do it.  Behavior modification, were it as helpful as many seem to believe, should have helped anyone who has ever attempted to “just stop” and yet it has shown itself as useless.  Unless behavior modification is used in its most extreme form, which I would argue is not dissimilar to torture, in which case it will and does produce short-term change, though at a terrible cost to the person being “treated”, it does not help those of us who are trying hard to change our less than ideal ways of coping with discomfort, fear, pain, and suffering.

Change is hard.  Changing the way we act is even harder than changing a belief.  Yet, we expect and ask children to change all the time.  We tell them something and then when they do exactly what we’ve asked them not to do, we wonder why.  Except that they are behaving the way most of us behave.  Adults are no exception to this.  Now add a neurology that makes communicating more complicated and all kinds of misunderstandings develop.  Conclusions are drawn, ideas and theories are created to explain, and yet…

Recently Emma was asked about something that happened at school.  She wrote, “if every time you tried to speak, the wrong things came out of your mouth, how would you feel?”  We live in a society where people knowingly say and do hurtful things all the time, yet those people are not put in institutions, given random medications against their will, labeled as “low functioning, ostracized, given electric shocks, condemned and treated as though they were criminals.  I’m thinking of a number of radio and talk show hosts whose ratings soar the more outrageous and venomous they are.  These people are rewarded for such behavior!  I’ve never met a parent who said, “I want my child to grow up to be rude, disrespectful and a bigot.”  And yet…

Today I will suggest a few topics and ask both my children what they’d like to discuss.

Em & N. ~ 2010

Em & N. ~ 2010

How Do We Put A Price on Communication?

As I was downloading a couple of photographs just now, I found the video we took of Ari and Emma’s presentation Wednesday evening.  Intact.  We’ve got it all!!  Woot!  Woot!  But before I put the video on here, I have to get permission from Ari and Emma.  So let me do that and then, if both agree, you should be able to view it next week.  I’m hoping by Monday.

In the meantime, there’s something else I want to talk about.  And that is the experience of hearing your child’s thoughts and opinions, interests, questions, and desires, when you weren’t sure you would ever be able to do so.  Now this is a little loaded because there are some who believe it’s wrong to suggest all Autistic people will be able to express themselves.  Those people believe there are some who cannot and it is creating false hope to suggest otherwise.  There are still others who feel that communication comes in myriad forms and we must stop insisting one way (speech) is the only way. They believe we should honor all methods of communication, whether that’s through words, sounds, body language, or silence and using our other senses.   Those people believe, and I am one of them, that we all have the wish to connect with our fellow humans in some capacity, at least some of the time, and it is incumbent upon all of us to figure out how we can support each other so that all have the opportunity to do so.

When Emma first wrote an unexpected sentence, described in detail ‘here‘ it was the beginning of what would turn out to be nothing short of an odyssey for all of us.  From that moment, on November 25th, 2012, we have experienced what can only be described as a dream-like adventure with Emma leading the way.  The degree to which she was underestimated by almost everyone who met her, including us, is beyond my ability to describe.  I say “almost” because there were a few people who met her who were not fooled.  It is interesting to note that those few were Autistic.  My friend Ibby was the first and we’ve written a little about this in two pieces she and I wrote featured in Parenting Autistic Children With Love and Acceptance’s first addition of their terrific new magazine, which you can read ‘here‘ (It begins with a piece by Ibby on page 17 and then ends with my companion piece beginning on page 21.)  By the way, the entire magazine is filled with wonderful pieces by Beth Ryan, Nick Walker, Cynthia Kim, Amy Sequenzia, Renee Salas, Sharon davenport, Alyssa Hillary, Kimberly F. Steiner, Juniper Russo, Amy Caraballo, Jane Strauss, Kelly Green, Steve Summers, Leslie Rice, Zita Dube-Lockhart, Leah Kelley, Lei Wiley Mydske and others who donated their art work.

When someone sees Emma, who now communicates by pointing to letters on a letter board, (which is different from when she wrote that first sentence a year and a half ago) I sometimes hear the following comments – “I just don’t see how this can translate to a school setting” or “It takes too long” or  “economically it’s not feasible because it requires a one on one ratio that most schools won’t be able to pay for.”  Except here’s the thing…  The way Emma communicates is tailored for an academic setting.  Just as in any classroom, a student is called upon to give an answer or thought, about any given topic, so could Emma be given the opportunity.  All it requires is for the teacher to say, “Emma when you’re ready just signal and you’ll be next.”  The aide can then raise their hand when Emma has finished writing.  This would also deal with the comment that it “takes too long” and I’ll just add that our society’s increasing desire, that everything be reduced to a sound bite, should be tempered, and having someone like Emma in a classroom, would be beneficial to all, by the very fact that we all need to slow the f*ck down.

As far as what this means economically, I argue that there is a great deal of money being spent on a great many things that are NOT working.  Things like trainings for methods that do not produce the type of complex and nuanced language we are seeing.  How do we put a price on communication?  How can anyone suggest that having someone who was thought to be unable, or worse, incapable of expressing their thoughts, not be supported to do so because of the cost associated with it?  How can any of us seriously object?  And yet… people do all the time.  And it catches me by surprise every, single time when they do.

To see your child express their thoughts, as we have had the opportunity to do, is beyond anything I’ve ever experienced.  It has changed everything.  Literally everything.  Some people have said to me, “Oh you’re so patient.”  No.  I’m not.  When Emma is writing something, I am filled with eager anticipation for what she’ll say.  Patience?  No.  Ecstatic is a better way to describe my feelings as I witness the outpouring of her words.

How we engage with our daughter, how we speak to her, what we think and now believe, all of it has dramatically changed as a direct result of her communication.  I haven’t even begun to discuss what this has meant to Emma.  And here’s just one more massive difference between then and now.  Instead of me guessing or making assumptions about what this means to Emma, she can now tell us.

“I want to tell you that I am capable.  Daring massively, eager to prove my intelligence, I will work tirelessly so that Autistic children younger than me won’t be doubted the way I am.”                                         By Emma Zurcher-Long

How does anyone put a price tag on this?

Emma Wears A Pretty Dress To School ~ April 4th, 2014

Emma Wears A Pretty Dress To School ~ April 4th, 2014

Emma Presents At CoNGo With Ari Ne’eman

Tuesday night I received a message from Jess of the blog  – Diary of a Mom – telling me she wasn’t feeling great, was supposed to get on an airplane the next morning to come to New York City to give a presentation, along with Ari Ne’eman, co-founder of ASAN (Autistic Self Advocacy Network) at CoNGO (Conference of NGO’s) in consultative relationship with the UN.  She asked me if I’d be able to step in if she still felt awful Wednesday morning.  I told her, not to worry, “we’ve got this,” urged her to drink liquids and get lots of rest, but that I fully expected her to wake feeling much better and that none of this would be necessary.

Fade to the following day.

Jess texts me to say she’s feeling wretched, definitely has the flu, there’s no way she’s going anywhere and has contacted the person who invited her to speak to tell him she can’t make it, but that she’s asked me and is hoping he’s okay with this change in plans.  So we wait to hear from him and I go about my day, trying as best I can to not think about it.

Three hours before the event I was able to check my email and see that I’d been given the green light.  I had a few things I needed to do before I could even think about what I would say, but because of an earlier conversation I’d had with Erich who organized the event, I felt I had a pretty good idea.  Basically I intended to introduce Emma and begin by reading her A Letter to the World followed by Emma Discusses Awareness, a quote from something Emma wrote about Acceptance just a few hours before and ending with a question to Emma, “would you like to add anything?”  An hour before the event I was in a panic, while Emma was cheerfully singing and dancing to Donna Summers, wearing her pretty party dress which she chose specifically for the presentation.

We arrived and Ari gave a terrific speech about autism, acceptance, the reason calling a group of people “burdensome” and an “epidemic” is hurtful and problematic and then it was Emma’s turn.  After I read Emma’s words about “Awareness” I said, “I asked Emma earlier today what she thought about awareness versus acceptance.  Emma wrote, “I am aware of many things, and so are you.  Acceptance takes more dedication.”  I paused and then turned to Emma and said, “Do you have anything else you’d like to add?”  I held her stencil board and gave her a pencil.  Emma wrote, saying each letter as it was pointed to, “Yes.  Autism was not something parents wanted to hear, but I hope that will change when more people meet someone like me.”

Applause.

I intended to post the video of the whole thing here, but our camera had a different idea and when we returned home, excited to see the footage, nothing had been recorded.  And because we thought the whole thing was being recorded we didn’t bother taking any still shots either.  So other than a few photographs of Ari, we got nothing.  (Insert sad emoticon.)

Regardless, Ari and Emma rocked and I’m guessing at least a few people came away with a very different idea of what autism is and isn’t.  And if I’m right then it was worth every second.

PS  Jess, I’m hoping you’re feeling better.

Ari Ne'eman

Ari Ne’eman

 

 

 

Awareness Sucks

Today I wanted to do a companion post to yesterday’s “Emma Discusses – Awareness“, with a post entitled, “Emma Discusses – Acceptance”.  I love when Emma tells me to put something she’s written on the blog, because her words are always so profound and insightful.  But once we returned home Em was too tired, so I resigned myself to writing about Autism Awareness and what that means to me.  After all today is World Autism Awareness Day.

A year ago I wrote a  post – Autism Awareness? where I discussed how my awareness regarding autism has changed over the years.  The next day I wrote  – “What I Wish I’d Been Made Aware of When my Daughter Was Diagnosed With Autism“.  After rereading those posts, I then remembered a couple of others I’d written about autism awareness and acceptance, ‘here,’ ‘here,’ ‘here,’ and ‘here‘.  And after all that I just felt cranky.  Seriously.  Just cranky.

I don’t look forward to April the way I once did.  April is a loaded month when many of my friends feel they must hide or cannot look at social media because they know they’ll be triggered by all the calls to “light it up blue,” the hype from organizations like Autism Speaks who seem to do nothing, but speak… it’s exhausting and in the end the awareness they’re pushing isn’t awareness that helps either me or my daughter.   What they seem to call awareness, is to my mind hyperbole, fear mongering and irresponsible.  I’ll be honest, I would be happy if Autism Speaks folded up their little tents and found something else to rant about.

In addition to Autism Speaks’ dire calls for action, the CDC released new statistics – 1 in 68 – and I just groaned because I know how those numbers will be used, forget that they’re almost completely meaningless and actually not an accurate number as Jim Martin explains in his most recent post, 3 Reasons Why Canadians (and Everyone Else) Should Stop Using the 1 in 68 Autism Stat (For Now).  More fear. More anger.  More calls for action.  More listening to people who don’t know what they’re talking about.  More and more and more and more and I just want to crank up Pharrell Williams’ Happy at full volume, put it on repeat and dance.

So in the midst of all the calls for awareness I’m going to hold my daughter close, revel in her presence, sink into my immeasurable gratitude that I get to be her mom and feel the joy in knowing she is a young woman who is talented, funny, creative, wise, insightful, kind, and more forgiving than anyone I’ve ever met. And, boy, am I proud of her.

How’s that for a little awareness?

Emma ~ 2010

Emma ~ 2010

Emma Discusses – Awareness

“Awareness is deciding something is worth your time and attention.  It is not necessarily good.  Real awareness needs to be balanced.” ~ Emma Zurcher-Long

I asked Emma whether she wanted to write something about autism awareness since April 2nd is World Autism Awareness Day, designated by the UN in 1989.  Emma wrote,

“Autism awareness really does me very little.  It is not honoring or making my life easier.  So many believe I am unintelligent even though I write well.  Until they see me writing, it is not what they assume.  What good is awareness if it doesn’t tell people the truth?”

Ariane:  “What is the truth?”

“The truth is, so much of what we perceive compared to another, isn’t known.  People see me, but don’t understand what they are seeing.  I want people to know what it is like to have smart thoughts, but not be able to prove it.

“No one wants to be treated with impatience.  I am happy when people are aware of how bright I am.  Maybe they have a special light bulb for that.  Shine some awareness on those of us who can’t talk the way we think.”

Texas ~ September, 2013

Texas ~ September, 2013

On Being Judgmental

The other day a parent felt I was being judgmental because of my Demanding Speech post.  I felt terrible that was her take away from the post, but I also understood why she felt that way.  One walks a fine line when criticizing current therapies or suggesting we do things differently while not sounding preachy or judgmental to those who feel the very thing I’m criticizing has helped their child. And I have to admit here that in writing the previous sentence I initially wrote, “suggesting we do things better for the sake of our kids…” which, yeah…  that sounds judgmental and yet…

So how do we protest, how do we talk about things, things we feel outrage about, things we believe are wrong without sounding like all those “autism experts” I so often criticize here on this very blog?

And the only answer I have, for myself and anyone else, is – stay open to other points of view, be willing to listen and learn.  But how do I speak my truth while understanding that what I say may upset some?  I don’t think it’s possible and I’m okay with that.  Not everyone is going to agree with me.  That’s okay.  I don’t agree with the vast majority!  But what I won’t do is stop talking about all of this.  I won’t.  And while I talk about all of this, people comment and email and reach out and give me feedback and many times after reading what they’ve written I rethink my position. I change, I grow, I learn.  All of this is a process, and by that very fact it means that what I believe, is in a state of constant flux, there’s movement, more to learn, more to understand.

I know what it feels like to feel another person is judging me.  It isn’t a great feeling.  And it doesn’t help me understand the other person’s point of view and it definitely doesn’t make me feel particularly inclined to stick around to hear what else they might have to say.  In fact, when I believe someone is judging me, my visceral response is to retreat or fight back.  But, if I can let go of that initial desire to flee, I often learn, even if it is a lesson in verifying what I already thought.  The most important thing I can do is not preach, not convince, not judge, but speak honestly about my experience.  If that resonates with others, great, if it makes people angry, so be it, if it alienates some, okay, but this blog is about our experience, mine, Emma’s and Richard’s.  I don’t speak for anyone but myself.  I don’t pretend to know what Emma’s experience is, even when she writes about it here.  The best I can do is interpret it, respond to her words, talk about what it means to me and ask more questions, but that’s it.  The same goes for my husband, I don’t and cannot speak for him.

And in the end, that’s all any of us can do.  I hold deep convictions about much of what I see going on with autism.  I object to most of what is commonly believed to be the “truth”.  Yet I also know I continue to get things wrong.  I have tremendous humility when it comes to all of this.  I am constantly learning.  People, usually Autistic people, are generous enough to share with me their experience of things and it changes my thinking.  I listen. I revise.  I tweak my constantly shifting beliefs.  I ask questions.  I continue to learn more, I realize how I haven’t gone far enough in my thinking.  I  dig deeper.

But when I am in a room where a teenage boy is being watched like he is a prisoner while eating his lunch, pelted with questions he cannot easily answer by speaking, his favorite food, in this case, rice, withheld until he finishes some other food, again in this particular case fresh, cut up fruit, overseen by someone else, whose only real power is that they can speak easily while the boy cannot, spoken to with barely concealed impatience and irritation, I’ve got a problem with that.  When I see a group of people being treated as unequal, with less respect simply because their neurology is in the minority, I feel physically ill.  When someone who cannot communicate through spoken language is treated as incompetent I feel sick.  When people speak to my daughter or speak about her, often in front of her, with exasperation, irritation, barely disguised annoyance, I feel enraged.  When a human being is treated with condescension by another human being simply because that person is deemed less intelligent regardless of whether this is true or not, I am motivated to speak out.

This is personal, it isn’t just some issue I feel strongly about.  Do I feel judgmental?  Sometimes, but more often I feel  sad.

What follows are a few photos that make me happy…

Henry and me laughing as Emma tries to convince Henry that the water isn't freezing cold

Henry and I laughing as Emma tries to convince Henry that the water isn’t freezing cold

My friend Ibby

My beautiful friend Ibby.  Photo taken by Emma

One of my favorite photos of Emma as a baby, because even then her personality shines!

One of my favorite photos of Emma as a baby, because even then her personality shines!

Larry Bissonette takes Emma's photograph

Larry Bissonette takes Emma’s photograph

The Result of Trauma

Recently someone commented on this blog, misconstruing a comment made by someone else, attacked that person, made accusations and as I was trying to remember how to block the person from making further inflammatory comments, they managed to write four more focussed entirely on me.   Each comment was more accusatory and hate filled than the next, and though they didn’t get through moderation, I saw them before deleting and successfully blocking the person and their various aliases.  And yet it made me sad to have to block them.

After years of blogging I have learned there is no use responding to such comments, because when someone has made the decision that you are hateful, and untrustworthy, really anything said will be taken as yet another example of what they’ve decided is true and reinforcing whatever it is this person believes.  Ironically, this is what happens to anyone who has been objectified, not treated as an equal or even a human being with respect and dignity, but rather has come to represent something larger than any single person can possibly be.

I have also learned that it is better to remove the offending comments than to allow them, as they do not lead to useful, productive discussion, but instead end up creating a mosh pit of anger and resentment, which can be far-reaching, upsetting and triggering to a great many, as opposed to just the one or two the original comments were directed to.

When a person has been traumatized repeatedly throughout their childhood, made to feel inadequate, told they are inferior, treated cruelly, belittled and teased mercilessly, they grow up believing, at least a little, that they deserved such abuse.  It also is common for that person to then become hyper vigilant of the same sort of cruelty being played out throughout their life with other people. It is a means of survival, as well as a way to protect themselves from more trauma.

For children especially, who’ve experienced on-going trauma, the tendency can be to see this same kind of abusive behavior that they grew up with, in others now that they are older.  Sometimes they may be correct and people really are being abusive, but other times their reaction will be incorrect.  People who wish them no harm, people who even care about them, will be viewed as abusive too, in keeping with all those people who hurt them in the past.  The original trauma will be replayed over and over leading to an unending cycle of trauma, reaction and trauma.

I’m not saying anything new here, you can read about PTSD, trauma and the result of systematic abuse over long periods of time by doing a little research yourself…

The point is, when we as a society, condemn a population of people, whether that is because of skin color, gender, neurology, sexual preference or anything else, we are doing long-term damage.  Damage that will result in an increase in addiction, depression, suicidal ideation, nightmares, anxiety, irritability, anger, difficulties forming close bonds with others and general feelings of isolation are a few of the symptoms documented.

Abuse is like that.  It has long tentacles, reaching out over decades and even entire lives, causing those who have been victimized to respond to others who wish them no harm, as though they were.

There is no easy answer, but if there is a single word that can be used, which will certainly not do more harm, it is love.  I know it sounds trite, too simple and clichéd, but  I believe it is the only answer.  As Emma wrote recently after reading a New York Times article about the ongoing fight for control of a vital highway in Afghanistan, “War is useless for making peace.”  Love has always been the answer.  Even if others cannot hear it, cannot believe it, cannot feel it, those of us who can, must be even more determined and vigilant.  Love.  Embracing those who are in pain, embracing those who are hurting, even and especially when they strike out.  And while we do that, we must protect ourselves and those who need our protection from any who are intent on hurting us with strong boundaries and the help and protection of others.  It’s a tricky balancing act and definitely something I am working on, but I am confident it can be done.

Love

Love