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Bringing Neurodiversity into the Classroom

  • Posted on November 17, 2009 at 10:42 PM

A little boy steps off the bus, confused by his unexpected surroundings.  This year—the year he starts kindergarten—the bus stops at the backdoor of a new school, instead of the front entrance of his neighborhood school, after a much longer bus ride.  Maybe he knows he’s being ushered into this new school through the backdoor, maybe he doesn’t.  Maybe he even knows the classroom he enters is segregated from his peers.  We assume he doesn’t know, because he doesn’t talk about it, because he can’t talk about it.  You see, this little boy is my own son, and he is autistic.  We assume he’s unaware that he’s being treated differently (not equally), but we can’t be sure.  Of one thing I am sure:  If he’s not aware of it now, he will be aware of it when he’s older, just like the many autistic adults speaking in favor of neurodiversity.

Unlike past forms of segregation, my son doesn’t spend his entire day in the special education room.  He visits the regular classroom and his peers are told that, even though he doesn’t stay in their room, he is part of their class.  He comes in with an aide who helps him participate.  Then, when it’s all too much, she takes him away.  The school system recognizes his educational needs differ from those of his peers and claims those needs cannot be met in a regular classroom.  I know my son’s needs are not met in a regular classroom, but does that really mean they cannot be?  I grew up learning that “different but equal” is not equal at all.  Sadly, that doesn’t apply to my children or others like them, because our society fails to recognize people with atypical neurological development as equals at all.

Some refer to this forced inequality as disabilism and see it manifested in pervasive ways throughout our society.  Disablism refers to the societal tendency to single out, exclude or mistreat people with impairments, because of those impairments.  Segregated classrooms for the cognitively disabled are only one example of disablism.  Disabilism is institutionalized into the public education system, in part, by the behavior of teachers, service providers, and administrators that Dr. Thomas Armstrong, an educator and author out of California, calls the disability discourse, which he described as “an institutionalized discourse consisting of specific words such as ‘disability’ ‘disorder’ ‘deficit’ and ‘dysfunction’ to describe the lives of these children.”  These societal behaviors shape the environment in which all of our children learn and grow.  Telling children a segregated child is part of their class, while well-intentioned, still fails to integrate that child into their class.

Unfortunately, the regular classroom is not only designed to exclude specific students from the learning environment it fails to include any child in the learning environment.  The public school system is designed to teach standardized curricula.  It is not designed to teach the individual students expected to learn that curricula.  Individual teachers can transform that environment into something special, but this ability is not a requirement for employment and often the resources to do so must be found outside the public school system.  This fundamental flaw is not the fault of individual teachers, principals, or school boards, but is built into the educational system itself.

Our children are unique with individual needs that can only be met when they are treated as people, instead of a homogenized group.  Our children do not come standardized.  Yet, our educational goals and the learning environment we create to meet those goals are standardized.  Our children get pushed through the system regardless of what they learn.  Unless, of course, their needs stand out so much that the system rejects them.  The child who does not and cannot fit the standardized mold is diverted into the special education system.  There, they face the unfortunate reality that they are not deemed equal in our society.  They are different, but not equal; and disabilism and the disability discourse shape their futures.

Neurodiversity is a two-fold concept that can change the public educational system for all children.  Neurodiversity refers to a civil rights movement crafted by autistics that seeks true equality for people with cognitive disorders and mental illnesses—founded on the belief that neurological differences are natural human variations and deserve the rights, accommodations, and acceptance any other human difference deserves.  Neurodiversity also recognizes that neurological development is not standardized.  Everyone develop unique neurological processes that should be recognized, respected, and facilitated.

Everyone is neurologically diverse.  Everyone has unique educational needs our education system fails to meet.  Instead of designing an education system that meets the individual needs of our children, we have designed an education system that meets societal needs for measurements, cost-control, and resource allocation.  Changes to IEP legislation that require recording strengths as well as needs, separating a grade into groups that study different levels of mathematics or reading, using inclusive language, and telling students that those segregated in the special education system are part of their class address surface issues.  But the problem goes much, much deeper.  Our education system is fundamentally flawed.  It does not meet, nor is it designed to meet, the needs of the students we wish to educate.

Our children deserve an education system designed to meet their individual learning needs.  Our children deserve a learning environment that teaches children, not curricula.  Our children deserve teachers that are trained and qualified to teach them as individuals, recognizing and meeting their individual education needs.  An Individual Education Plan shouldn’t be a privilege reserved for students with special needs, but should be provided to all students.  Our school systems need holistic change.  We need to re-think how we teach, what we teach, and who we are teaching.  We need to rethink the qualifications our educators need and we need to rethink the needs our schools should be required to meet. 

Change comes slowly and painfully.  Holistic change may be easy to envision, but it is very difficult to achieve.  It won’t happen this year or next year.  But it can happen.  Change requires a lot of work, a lot of planning, and often a new allocation of resources.  An individualized education provided by well-trained, highly-qualified, and fully-resourced staff doesn’t come cheap.  But our children are our future and they are worth the work and they are worth the money.  The real question is:  Will we afford our children the respect and consideration they deserve?

“Wow!”

  • Posted on October 21, 2009 at 1:47 AM

Can I just say that again?  “Wow!”  Today has been a great day, and I just don’t get to say that enough.  It’s not that I don’t have good days or even great days.  It’s just that things get so busy the “great” just goes flying by and I don’t stop to reflect until the humdrum days come.  So, I want to take a moment out of this very busy day and just say, “Wow!”

The reason I want to write is because I cannot imagine making a living any other way and still being happy.  I’ve tried various jobs and experienced various degrees of unhappiness doing those jobs.  I love to write, and as long as I believe what I’m writing, I’ll write just about anything.  Getting paid for it is just one of those bonuses that life throws at me every now and then.

The reason why I write about neurodiversity is different.  Blogging, of course, is cool, because you get to interact with people spread across the world in dialogues you’d not likely have in any other way.  But writing for publication goes beyond even this.  I’m working on a piece about The Autism Acceptance Project.  E-mailing back and forth with Estee is always great.  I’ve enjoyed her work for years and this project (mine, not TAAP), started expressly because of that friendship and my admiration for her work.  Busy as she is, I’m pretty sure I could e-mail her just to say “Hi.”

Today, I had an opportunity I probably wouldn’t have attempted without this project.  I got to call and speak with Michael Moon!  And I have to say it again:  “Wow!”  Of course I’ve spoken with autistic adults before (I can’t imagine having a child diagnosed with autism and not seeking out autistic adults for their insight, though I know it happens), and I always have to shake myself afterwards and try to understand where the prejudice comes from.   But, wow, is Michael an impressive person!

His photography is inspiring, his music is tingling (in a very good way), and his words are powerful.  Get a taste of his work and know that is his time to devote to the site hasn’t quite caught up with his aspirations for its content (which means there’s more to come).  But the content is rich and moving as it is, so check it out!

Busy or not, I couldn’t let this “great” fly by without one last “Wow!”

Autism: The Musical

  • Posted on October 3, 2009 at 12:00 PM

I thought “Autism: The Musical” was old news.  At my brother’s request, I borrowed a copy of this movie through Netflix to coincide with my brother’s visit while he was working on a project to design a sensory center (he’s a student of architecture) that would, should it ever be built, meet the diverse sensory needs of children with autism while also removing averse sensory stimuli from the building’s design.  The research he conducted while he was here included long conversations with me, meetings with some of our service providers, and watching this video to get reactions from my mom and me.  Time is only a passing acquaintance of mine that leaves few discernible marks in my memory – meaning I don’t know when this viewing occurred.  However, it was months and months ago.

Autism: The Musical was released in April, 2007, and seemed like “old news” when I watched it.  Now, over two years later, it’s still having a newsworthy impact.

“I cannot make people value my daughter,” one mother said, while speaking of her child during an emotional showing of “Autism: The Musical” on Sunday.

That one quote quickly became a talking centerpiece at the event.

Honestly, I don’t remember the entirety of my reaction to this movie.  I do know there were some parts I considered seriously controversial.  I also know that Autism Speaks posted this description:  “As it follows their journey, the audience not only better understands the nature of what autism is, but celebrates the joyful spirit of each child.”  Not without irony.  I also remember that it provided an excellent platform for my brother to experience the diversity that is autism beyond what my three unique little boys can provide.

What I also know is that Autism: The Musical supports getting involved in Autism Speaks, Cure Autism Now, and the (seemingly out-of-place) Miracle Project.

If it serves as a vehicle for communicating the value of autistic persons, that’s pretty good news.  However, I can’t help but think valuing autistic persons and curing people of autism are conflicting paradigms.

Treading the Muddy Waters: The Divided Communities of Autism

  • Posted on October 1, 2009 at 12:00 PM

Marc Sirkin, chief community officer at Autism Speaks, said:

We believe that all perspectives are valid and need to be heard and respected. No one perspective can ever be the definitive voice of autism.

I reluctantly agree, though I think it’s sad.  Once upon a time, it was common belief that people with dark skin are inferior to people with lighter skin.  Even the labels we used reflected these beliefs.  We called one black, the other white; we associated black with night, evil, and filthiness; and we associated white with day, good, and cleanliness.  This belief is no longer considered socially acceptable by the majority of our society.  Yet, some people still cling to this belief to varying degrees.  Despite the lack of social acceptability, some people experience racism as a common, even daily occurrence.

Someday the presumed inferiority of people with neurological differences will no longer be a socially acceptable.  Some day saying society should eradicate neurodiversity from the face of the earth will be widely viewed as a call for genocide.  And yet, when that day comes, some people will cling to this belief that neurological differences are marks of inferiority, that differences should be cleansed from people like so much filth.

It’s human nature to disagree.  It’s human nature to degrade.  It’s human nature to let prejudice, assumptions, and ignorance sway our thoughts and emotions.  It’s human nature to have to fight for the rights and worth of minority groups.  As much as I believe in the potential for individual human beings to be genuinely good, noble people; I do not believe human beings, as a species, will ever get passed these fundamental flaws.

Here and now, the inferiority of people with neurological differences is commonly accepted.  After all, these traits are “disorders,” so they are obviously inferior.  Not everyone feels this way, of course, but most people need to be awakened to the possibility that the obvious is not the truth before they can make a conscious decision about what they believe.  This awakening can and does happen.  I’ve seen it in the eyes of people I’ve talked to who have listened and understood.  There’s a visible transformation that plays out on their faces as they digest this new point of view.  Their faces reflect first confusion, then understanding, and openness to the possibility.  Then, their eyes widen with a moment of inspired surprise.  They see the faulty assumptions with new eyes and slough them off.  It’s a wondrous moment to watch this awakening transpire!

But, I’ve also seen cold, deaden eyes from people who closed their hearts and would not listen.  I’ve seen them turn away in disinterest; I’ve felt them turn on me in an all-out attack; and I’ve watched them smirk in derision.  Whatever their reasons may be, they are not open to the idea that someone with a label like “autism” or “bi-polar disorder” or “ADD” is equal unto themselves.  There’s little we can do for them but keep sharing our message.

To evoke the change that must occur before people with neurological differences are recognized as equals in society we must win the hearts and minds of as many as we can.  We must do so, not through coercion, but through conviction.  For each person whose heart burns with the cause of the neurodiversity movement there will be a different strategy and a different set of tasks.  No way is wrong and I do not presume to dictate anyone else’s approach to sharing this ideal.

My approach is three-fold.  First, I want a better world for my children.  My children are autistic, and if they face as adults the same world they face as children, they will spend their lives marginalized, ostracized, and victimized by the callous society which repeatedly fails to recognize their humanity.  I don’t want that for my children.  I recognize that to truly transform this world one of the things I need to do is converse with those autistic adults who are also trying to change the world.  These are those who can help me understand my children better and can help shape the messages I need to share to improve the world for my children.

Second, I want to help all the traumatized, victimized parents, and their children, who are reinforcing the world as it is.  This goal is much more difficult for me, but it is my conscious choice to pursue it.

Once, a long while back, I came across a story about Alison and Ryan Davies.  Ryan Davies was a little boy with autism, much like my own children.  His mother, however, was nothing like me.  She was traumatized by the experience of raising her autistic son.  She was so traumatized that she did something I found unthinkable.  She took her son to a bridge, held his hand, and jumped, pulling him down to his death.  This was the first story of this nature that I had ever read and it is burned into my memory and my soul.  It’s a constant, aching brand on my psyche.  It was the first story, but it hasn’t been the last.  One thing that makes this story so poignant for me is what came after.  Alison Davies’ sister actually defended the mother’s actions, and described this premeditated murder as “an act of love.”  Even now those words make me sick to my stomach.

The story broke my heart.  More than that, it made me so very angry.  Time and again, I would come across of a parent who took their autistic child’s life and the anger would boil inside me.  I condemned these parents whole-heartedly.  It was so easy to be angry, so easy to condemn them.  I couldn’t understand them and I refused to try.

But the turmoil of these emotions got in the way of raising my own children.  I had to let that anger go.  I still mourn the loss of these precious children, but slowly I have developed a compassion for their parents as well.  Being who I am, it is difficult to imagine someone who just didn’t question the diagnoses and prognoses of the medical professionals.  It is difficult to imagine the loss, the hopelessness, and the pain of these traumatized parents who couldn’t fight the precepts society that doomed their children.  I sought knowledge and I cling to a very peculiar hope because it is an integral part of who I am.  Furthermore, I have loved and married a man who is marginalized by society, who is deemed to be of little worth, simply because he’s not normal.  I’ve seen how the way he is treated has done so much more harm than his neurological differences.  I’ve known people who have been dealt a bad hand – one that, should the precepts of society prevail, would have limited them to menial existences – yet they triumph over extraordinary circumstances.  I know in my heart that my children are precious; and I know in my heart that the child and the autism are forever intertwined, but that the challenges posed by autism will only be a fraction of the challenges they face because of how the autism is perceived.  For so long, I couldn’t tolerate anyone who didn’t have this understanding.  I assumed that they chose to be traumatized, knowing full-well there were viable alternatives.  For some that may be true.  But for many the ideas society accepts are all they’re really aware of, they cannot imagine another way to perceive their child.  Unfortunately, the idea that society accepts is that children with autism are broken and we don’t have any way to fix them.  These parents desperately need another message, another voice.  They need a voice that helps them break through the trauma.  They need a voice that doesn’t victimize them, but empowers them to help their child.  My voice will be part of that larger voices that seeks to open their minds to the possibilities, instead of thrusting them down into the depths of despair.

My third purpose is the belief that the best way to change hearts and minds is to bring this message into the mainstream.  For many of the people I talk with in my community neurodiversity is a concept with which they are completely unfamiliar.  Teachers, therapists, psychologists, and parents find the idea completely foreign, though not always completely unwelcome.  Communicating primarily online creates this illusion that the idea of neurodiversity is wide-spread.  It certainly has an international following.  But that isn’t enough.  As wonderful and the Autism Hub and the many bloggers who write about neurodiversity are, you only find them if you know to look and care enough to make the effort.  And there are those who are getting this message into the mainstream, but it’s still too few and too far between to have the kind of impact we need to enact the kind of change required.

Bev of Asperger Square 8 said:

Unless you are autistic, or your family member is, you probably don’t spend much of your days reading and thinking about what it means. You take the sound bites, read an article or two, watch 60 Minutes or Larry King. Nothing wrong with that, it isn’t your job to figure all this out.

While I certainly understand what she’s saying, I must disagree.  There is something wrong with the majority of people remaining oblivious to all the damage being inflicted on neurologically diverse people by the “squeaky wheel” of those who want to eliminate them.  There is something wrong with a society that will propagate the views of the powerful, while leaving the weaker minority with few means of communicating with the masses.  By allowing it, these everyday people provide their implicit approval.  By remaining ignorant of it, they don’t even know they’re doing so.  It’s not enough for people who have a connection to neurologically diverse people to care about what happens to them.  This issue deserves everyone’s attention, because it affects them whether they know it or not.

The image of puzzle pieces – scattered and awry – is associated with autism.  I’ve never understood that.  For me, the image I associate with autism, or at least my place in association with autism, is that of a bridge.  This is not a bridge to be jumped off of, but a bridge between perceptions.  I am the bridge between my family and society.  I also want to be one of the bridges between society and neurodiversity.  The change must happen.  The societies in which neurodiversity is strongest are societies based on freedom.  If the majority of the people in these societies truly knew, truly understood what is going on under their noses and being done in their names, they would not tolerate it.  I want to be one of the bridges from the understanding they have and to an understanding of the truth behind the sound bites in order to effect the change that we all need so desperately.

Revealing Research

  • Posted on September 26, 2009 at 12:00 PM

I admit when it came to the “autism epidemic” I took the statistics pretty much at face value.  I didn’t interpret the situation as dire, but I assumed there was a causal factor other than broadened definitions and increased awareness that supported the growing number of autism diagnoses in children.  Left Brain/Right Brain of the UK was the first source I’d seen that convincingly shed both doubt and light on those statistics and raised issues of bias that I needed to consider.

Now, research also coming out of the UK sheds further light on this very important issue.  I read this article posted in Medical News Today:

This ground-breaking study shows for the first time an estimate of how many adults are living with autism spectrum disorders (ASDs) in England. The study into the prevalence of autism spectrum disorders among adults shows that one in every hundred adults living in households has the condition - broadly the same rate as that cited for children.

The implications of this research are, in my opinion, nothing short of profound in their implications of the politics of autism.  Further relevance is revealed in these findings:

  • While 1.0 per cent of the adult population had an autism spectrum disorder, the rate for men was higher (1.8 per cent) than for women (0.2 per cent). This was in line with studies among child populations which show higher rates amongst boys.
  • People who were single were more likely to be assessed with an autism spectrum disorder than other marital statuses.
  • Among men, prevalence of an autism spectrum disorder was lower among those with a degree level qualification than among those with no qualifications.
  • Men renting their home from a social landlord were more likely than those living in other types of housing to have an autism spectrum disorder.
  • Adults with an autism spectrum disorder were no more likely to be using services for those with mental or emotional problems than the rest of the adult general population.

If I ever doubted we needed to take a serious look at how we, both in the US and internationally, approach autism this offers a never-before-seen glimpse that shows very clearly that we do.  Misinformation and assumptions having us looking for causes and solutions to this false “epidemic,” when what we really should be doing (and should have been doing all along) is using our resources to find ways to solve problems people with autism face every day.

Implications of Therapy

  • Posted on September 20, 2009 at 12:00 PM

Bev, of Asperger Square 8, has taken on an excellent project that has opened my mind to many new thoughts.  It’s called: A Checklist of Neurotypical Privilege.  While the entire document is worth reading (I highly recommend it) one piece stuck out and pricked me – mind, body and soul.

13. For a child of my neurotype, everyday teaching of the skills they will need to live in this society is called education or parenting—not therapy, treatment, or intervention.

The implication here is that for neurotypical children education is called education, but because neurodiverse students sometimes require different lessons, different teaching styles, and different techniques, their education is called therapy.

I consciously try to foster my children’s sense of worth and power.  I try to build them up so that they and others can better recognize their potential.  I do not, in any way, consider my children “less” because they are not neurotypical.  And yet, I never consciously thought about the implications of the use of “therapy” to describe our efforts to meet their educational needs.  The specialists who assist us in designing strategies and “interventions” to help my children learn are called therapists and they perform services that are funded as therapy.  I never once questioned these labels.  Now, after reading this document, thinking about it, and letting the issues it brings up fully penetrate my mind and my heart, I’m amazed and chagrined that it never occurred to me.  I’d long lost my comfort with the use of “intervention strategies,” which is a common phrase that’s applied to services intended to assist individuals with special needs.  But therapy always seemed completely innocuous.

When I think about the purposes of therapy, however, the point becomes clear.  The reason my children require therapy is because they do not learn all the things they need to know in a neurotypical manner.  Therefore, to teach them the things they need to know, we need to use different strategies, techniques, and behaviors to help induce learning.  Learning is still the goal.  So, whatever the means, teaching and educating are still the verbs.

Comparatively, consider the teaching strategies sometimes used with at-risk youth.  There are many, from charter schools to special programs, but they’re not called therapy.  These are children who often have neurotypical development, but face challenges not experienced by mainstream society.  To educate them as we should, we need to find ways to compensate for those challenges and this requires changes in teaching techniques.  In our language, we recognize that these differences and unfortunately we sometimes use language that denigrates the worth of the children, but we don’t call it “therapy.”  That’s reserved for students with disabilities.

Just as kids who perform below average or have problems due to their experiences, children who perform above average get specialized educational programs as well.  When I was a student, I attended classes that were labeled “differentiated.”  More was expected from me and my fellow classmates than our regular peers.  Specialized lessons were prepared for us and techniques were used to prevent the typical boredom children with above-average intelligence often experience in school.  It was differentiated, but still education – not therapy.

So, why do we use therapy to describe techniques used to teach students with special needs?  One obvious answer is that it hasn’t occurred to well-meaning people that the word might be offensive or inappropriate.  This is not a reason to continue using it, but it does explain part of the problem.  Like myself, there are others who have never considered the word might be controversial.  If this were the only barrier, change would be relatively easy.  Not genuinely easy, but more easy than it would otherwise be.  Unfortunately, this isn’t the only reason.  There is one good reason I can think not to change the use of the word.  Now, I caution you, it’s not a very good reason, in that it’s ethical or right.  It’s a good reason in that it benefits those the educational services are intended to benefit.

Simply put, the reason to keep the “therapy” label is funding.  Specialized educational services are expensive.  Funds are not readily available for these services.  In many American schools, the only reason these services get the funding the need is because it is federal law that they be available.  In many American schools, parents have to fight to get school officials to recognize that the services provided must be dictated by the needs of the child, not be the availability of resources.  This is a legal right won in the courts.  And it’s still an issue.  By changing the wording from “therapy” to “specialized educational services” one risks losing some of the oomph that “therapy” has.  Whether it’s accurate or not, whether it’s ethical or not, whether it’s true or not, “therapy” has a more respectable reputation with hints of medical necessity that “specialized educational services” lacks.  It’s all about shades of meaning here.  The research behind therapy and that supports its use is better funded and better supported than the research behind specialized educational services.  Programs for at-risk youth and for children with above average intellects are cut before students with disabilities, because the programs for students with disabilities have been propped up by law through the research that supports the benefits of therapy.  By changing the wording, you change the meaning in the minds of some of those you communicate with (which, admittedly is part of the point) in such a way that it’s detrimental to the programs being funded.

Now, again, I’m not saying that it’s a good thing that other programs are so easily cut from school budgets.  I don’t believe that.  I believe that all children, regardless of what their needs are, should get the educational services that fill those needs.  Society’s sense of the value of unique individuals has not progressed to that point yet.  By pushing for the human rights implications of education over therapy, I perceive a risk in damaging the fundability of those education services.  Ideally, the human rights implications would take priority.  They should.  But, the reality is that these services are often necessary.  I’m reluctant to advocate anything that would endanger their availability.

Which is not to suggest Bev’s document does any such thing.  I believe the purpose of the document was to open our minds.  If that’s true, then it certainly worked for me.

Teaching Self-Advocacy

  • Posted on August 27, 2009 at 8:09 PM

According to Dictionary.com, advocacy is the act of pleading for, supporting, or recommending; an advocate is an intercessor who pleads on the behalf of another or a cause.  Advocates have worked hard to reshape the way societies view disadvantaged minority groups.  Individuals within those groups have also stood up to fight for themselves and their right to be treated with respect and dignity as human beings.  Individuals with developmental disabilities are no different.  Except, for them, we’ve had to coin a new word before we could accept the validity their actions.

Thus, the concept of self-advocacy was born.  Self-advocacy is a civil rights movement that advocates for the right of people with developmental disabilities to speak for themselves on their own behalf.  For typically developing people, the act of self-advocacy would simply be called standing up for their rights or self-defense.  Yet, society feels we need another word or phrase to describe this same behavior in individuals with developmental disabilities.  Our society still clings to the belief that people we label as developmentally disabled cannot decide how to live for themselves, and we find it rather remarkable when they try to do so.

As much as this need for a separate term offends me, I have a responsibility to teach my children to advocate for themselves and for each other.  Growing up, I knew I could rely on my brother in this capacity.  I didn’t have the need for advocacy my children have, but my brother stuck up for me and defended me when I lacked the power to do so for myself.  He saw value in me that I often couldn’t find in myself, but I learned to stick up for myself by watching him.  I want my children to have the same close relationship and the same desire to stand with each other.  I want my children to grow into strong individuals who will stand up for themselves and the people and causes that matter to them.  I want them all to be advocates and self-advocates.

How do you teach children who struggle to socialize to grow and wield their influence on behalf of their own interests and the causes they believe in?  As I’ve learned with my stepson, this is a difficult thing to instill in young minds even when communication is relatively easy.  My stepson Brandon faces many challenges uniquely his own.  Many people in his life either refuse or are unable to see his potential.  He struggles to believe in himself and his abilities.  He’s starting to understand that he has a right to stand up for himself, for what he believes, and what he can do.  At the tender age of twelve, he risks seeing many doors close to him if he doesn’t stand up to those who would hold him down.  His father and I, and others who believe in his potential, can help.  But, in the end, he must believe in himself, speak for himself, and act on his own behalf.  This is a regular part of growing up.

The same will be true for my other children, Willy, Alex and Ben.  They will face even greater challenges, because more people will see them as limited with little or no potential to grow and develop, to do and be.  Now they are still young enough that my husband and I can shelter them from most of the doubters.  Alex and Ben are mostly unaware that there are those who would limit their potential.  Willy is becoming aware of this, though, as he gets older and interacts more fully with his peers.  Many of his fellow students have grown up with him since pre-school.  They accept Willy, but they also regard him as less capable than themselves, even in areas where he excels.

I attended one of Willy’s field trips to one of this city’s many parks.  When they were playing on the playground equipment, Willy wanted to climb up the biggest slide with the rest of his playmates.  One of his classmates said, “No, no Willy.  This slide is too big for you.  You might get hurt.”  The child meant well, but he was wrong.  This activity was no more dangerous for Willy than it was for the other children.  Willy struggles with the intricacies of language and socialization and processes sensory stimuli different than his peers.   Willy excels as an athlete, but struggles with sportsmanship.  So, I took the child aside and talked to him.  The idea that Willy, who struggled with things he and their other classmates did so well, could play their game and climb the big slide just like them was novel to him.  “But he might fall.”  I nodded.  “He might.  But you might fall, too.  Any of you might fall.  Willy is autistic, which means he can’t do some things as well as you do.  But he can do this.”  So, we watched as Willy climbed up the big slide.  His foot slipped once, but he made it to the top.  There was a new look in his friend’s eyes as he watched Willy slide down – a look of wonder and pride, but also incredulity.

Though he speaks, Willy still has a hard time getting others to listen when he tries to stick up for himself.  However, he’s learning to advocate for his little brothers.  Neither Alex nor Ben have an effective means of communication with those outside their circle.  Willy often acts as their intercessor.  “My brother won’t ask for it, because he doesn’t talk, but he wants a drink.”  Or, “You can’t make fun of him.  It’s not nice.  He can’t help it if he can’t talk.”  Brandon, too, is learning to stick up for his younger brothers.  Still, self-advocacy eludes us.  Perhaps it will come in time.  But, perhaps, you must learn to stick up for others and appreciate them for all their differences, before you can truly stick up for yourself.

Making the Connection

  • Posted on August 23, 2009 at 5:15 PM

When Willy was diagnosed, we were told Willy would never say “I love you.”  The doctor wasn’t just talking about the verbal expression of love, but implied my son lacked the ability to feel love.  Now, seven years later, Willy says “I love you” at least a dozen times a day.  He expresses love through hugs, kisses, and quiet acts of compassion.  It is easy to see and to hear and to feel Willy’s love.  He has deep connections with the important people in his life – both adults and children, whether they are family, friends, or service providers.  He loves and he shows it in a way that’s easy for others to recognize.

Alex, on the other hand, is predominantly non-verbal.  He’s said “wuv oo” maybe a dozen times in his entire life.  Like all his words, these are rare precious.  Yet, even for Alex, the implication that he does not love or cannot show his love is entirely wrong.  Alex loves the same way he does most everything else – passionately, loudly, and deeply.  Alex is sparse with hugs and kisses most of the time, then has sporadic outbursts of affectionate touching where he wants to be hugged and kissed for long periods of time all at once.

Alex shows his love in other ways that become easy to read if you make the effort.  His face lights up when his Noni (grandma) comes over and he bounces up to her, holding onto her, and trailing behind her like a loud, wiggly shadow.  He grabs people he loves as if he’s literally trying to pull them into his experience.  He jumps at them and presses himself against them like he’s trying to occupy the same space as they are.  His touches can be gentle, but usually he uses the same pressure on others that he likes for himself – deep, rich pressure that reaches to the bone.  When he greets those he loves his vocalizations reach an excited pitch that has a different tenor and tone than any other time.  He loves with his whole being, every fiber and sinew, and expresses it the best way he knows how.  Yet, many people outside the chaos of autism would not see or interpret his love accurately.

* * *

Some people assume that “normal” people can communicate with each other and autistic people cannot or cannot do so easily; thus, there is either no communication or faulty communication coming from the autistic people.  Those who have studied communication, however, know that communication is a difficult process.  Even “normal” people rarely communicate effectively.  What I say, you may hear, but you’re likely to interpret it differently than what I mean – if you’re listening at all.  Truly effective communication is rare.  People hear, but they don’t listen; people read, but they don’t seek to understand.  We talk, but that doesn’t mean we communicate.

When an autistic person is trying to communicate, this problem may be exacerbated by the different ways some autistic people use to communicate.  For example, Willy is heard more often than Alex, because he communicates in a way that neurotypical people are familiar with; whereas, Alex communicates in a way that is all his own, and most people have no experience listening to him and assume he’s not communicating anything.

In this sense, it is true that some autistics do not communicate effectively.  In order to effectively communicate, the hearer has to listen and try to understand.  That does not mean it’s true to say that autistics do not express themselves or their emotions.  Whether they use words or not autistics do express themselves.   Some use a set of verbal and body languages very different from our own.  Others learn the set of verbal and body languages we use daily, but it is as if these means of communication are foreign to them, like French or Spanish is foreign to a native English speaker.  Even if they become fluent in the ways we communicate it will still be more challenging for many autistics to communicate unless we learn their verbal and body language as well.  Communication is a two-way street, and we shouldn’t expect them to do all the work.

* * *

A while back my brother came to visit.  He can rarely afford to make such a trip, so it’s always something of a shock when he’s here (for him, not us).  He loves his nephews dearly and tries very hard to communicate with them, but it requires a period of adjustment, especially with Alex.  Willy is verbal and very physical and adores his Uncle Pat to no end.  It requires very little work for them to re-establish their connection.  Benjamin Patrick, my brother’s namesake, loves to be lifted high and tossed around.  That and an unconscious sense of trust (that’s doled out selectively, but uncanny wisdom) is enough for Ben to build a bond with someone.  Alex is more puzzling for most people.  It’s not that he adores his Uncle Pat any less, or that he doesn’t appreciate the physical play that my brother is so good at, but Alex communicates in a way uniquely his own.  Understanding Alex can be difficult even for those of us with a lot of practice.  For someone without that practice, sometimes it’s simply impossible; often an interpreter is necessary.  Alex is also more wary than his brothers.  He likes to stay back and observe before he joins in any action.  He’s also adapts more slowly to major changes, but handles minor ones more easily.  So, when my brother came Alex held back at the first.  But once Alex regained his sense of equilibrium while having Patrick in the mix he was able to interact with Uncle Pat as well as he can, but it still was difficult for Patrick to understand him.  It wasn’t that Alex didn’t express his love or his enthusiasm in having Uncle Pat around, but that it was more challenging for Patrick to understand him.  Patrick knew this, accepted it, and did the best he could to understand.  Most people don’t bother.

In order to connect with people socially, communication is required.  In order to have communication, there needs to be an expression, a “listening” period, and comprehension.  To say autistics do not express love or that they do not try to make connections with others is wrong.  The expression is there, but may come in different forms than most of us are familiar with.  The questions becomes:  “Are you listening?  If you are, are you trying to understand?”  From what I’ve seen, the answer is often no.  We hear, but we do not listen.  We talk, but we do not communicate.  When communication fails, we blame others because they didn’t speak to us.  Most of us don’t stop to ask, “Did I listen?”

Estee Klar’s Joy of Autism

  • Posted on August 19, 2009 at 12:00 PM

Back when I was blogging at Hazardous Pastimes, I used to converse regularly with Estee Klar at The Joy of Autism.  Estee is also the founder and executive director of The Autism Acceptance Project, where she works to advocate the acceptance and accommodation of autistic individuals and where she also promotes the work of autistic artists.

You can read more about Estee’s personal journey with autism.  In this article, Dr. Baum describes Estee as, “really a fighter; she has lots of energy to push forward the cause of children with autism. She is a huge advocate for people with autism to have the right to be who they are and that society must accept them.”  Estee has done her research and comes clearly on the side of rights, dignity, and quality of life for autistic individuals.

I have great respect for Estee and look forward to a renewed and on-going friendship with her.  The work she does is very important for the autism community as she seeks to fight misinformation, prejudices, and discrimination where she finds it.