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My Journey from Professional to Father

Sean-Swindler 350 By Sean Swindler, M.S.Ed. —

I come to Autism from a different path than many, having worked first with adults with developmental disabilities, at the state level in disability policy, and then as a special education advocate and Case Manager for children with developmental disabilities. Throughout this journey, I met many people with Autism Spectrum Disorders, worked with many families and children on issues common to the Autism community – behavior plans, obtaining appropriate services in both the school and community, and our kids with Autism caught up in the juvenile justice system.

My wife, too, first experienced Autism as a special educator (we met in graduate school getting our graduate degrees in Special Education), doing those familiar special educator tasks of developing behavior plans, training paraprofessionals to implement a classroom routine and leading IEP meetings.

So on paper, you could say we “know” something about Autism. In fact, had you asked us 5 years ago, we would say we “know” something about Autism, with all the confidence of a person who has no knowledge of what they don’t know – Autism from the perspective of a parent.

I think of myself as an empathetic person. In fact, I consider it a strength. I always thought I was pretty good at putting myself in someone else’s shoes. In fact, people complain at times that I like to examine things from too many different angles, to explore all of the possibilities. Sure, I think I know what the parent of the child with Aspergers feels like when I, as the child’s Case Manager, assist the parent at yet another school meeting about yet another social misunderstanding with legal implications. Sure, I can understand the daily impact of behavior on the dynamics of a family. All the confidence of a person who has no knowledge of what they don’t really know.

My wife knew something was different when our son was 18 months old. He was so intent on arranging his blocks in neat rows. So upset when they were disturbed. He was fascinated with the details in objects, with taking things apart and putting them together. He didn’t sleep. We once walked around the block at 4:30am thinking maybe if we do a little exercise he’ll finally conk out (he didn’t). There was the time when he was so upset he reached from the back seat and pulled my wife’s hair and scratched her face. There were the calls from his pre-school to pick him up because he wouldn’t lay down and nap and not stop bothering the other kids trying to sleep.

The first child psychologist said its clear he has Oppositional Defiant Disorder, which through my professional experience I knew was a catch-all way of saying “we don’t know why he acts this way.” Another wanted to talk about the relationship I had with my father (fine, thank you). Finally, on our third try, they pinpointed ADHD. That makes sense. I have ADD and that can run in families. After more observations and recommendations from a good play therapist, at age 6 our son was diagnosed with Aspergers.

On the way home, my wife and I had what I like to describe as our “V-8 moment” – that forehead-smacking realization that it all makes sense. She could suddenly think of half a dozen former and current students who possessed similar behaviors. I could think of a dozen children and families I had worked with who had Aspergers, and how many emerging similarities I ssaw between our son and their stories about their children. Aspergers. For lack of a better word to sum it all up: duh.

The fascination since age 3 with Power Rangers. The collector of action figures who can tell you who bought him which of his hundreds of figures where. The fascination with Star Wars. (Being somewhat of a sci-fi geek myself, I feel fortunate that I have at least a passing interest, but alas my efforts thus far have been futile to interest him in Star Trek). Commenting out loud whenever his delicate sense of smell is offended. Did I mention he doesn’t like to go to sleep? And school.

For over 10 years I had been a special education advocate. People would pay me (actually, the non-profit I worked for) to attend their IEP meetings and help them advocate in the IEP process, sometimes in incredibly tense near due-process/mediation situations. My wife, similarly, has lead IEP meetings for years as a teacher, and written IEPs in the district where our son attends school. He needs an IEP. Easy! This should be a piece of cake for us. We’re blessed with a wonderful elementary school and a fantastic school team. I don’t know what would have happened if we had a team like the ones in meetings to which I was usually called to attend in other districts. Because it was hard.

It’s a different feeling. My wife teared up a little during the first meeting. My response when things are difficult emotionally is to do the opposite – to become detached and to view things over-analytically. Except that doesn’t work when it’s your kid. Your brain freezes. You become overwhelmed by the process. You say yes to things you may have told someone else to say no to. You say no to things that aren’t important. You sign the notice of meeting in the wrong place. All behaviors the families I attended meetings with demonstrated over the years.

And the list of all these things I experienced as an advocate, case manager or policy-maker over the years grows. Like a wave of past professional experiences seeping into the most personal. And its all different when it’s your kid:

Having a behavior analyst visit your home. I guess we should clean?
Feeling like a failure when nothing discipline-wise seems to work. But I know Autism, right?
Deciding which medication to try or not try. “It’s a personal decision every family has to make, but for some kids medications can be a big help” I must have said a hundred times.
Deciding when to buck the recommendation of the psychiatrist and when to try something new. But doctors are supposed to know what they’re talking about, right?
Having that school meeting about a social misunderstanding that in a different place could have legal implications. That parade of kids sent to court for shoving their para or standing too close to someone enters my head as I enter the school building.
Speaking of courts…trying to avoid being tardy too many times. Because some days he refuses to go to school or finds other creative ways to delay the inevitable.
Working with the school to individualize curriculum. Its harder to keep track of homework when some of it is modified. Did you know that?
Dealing with the stares when inappropriate behaviors happen in public. You can feel the judgement, “why don’t you hire someone who knows how to work with your kid?” But I used to be someone who worked with kids with Autism. I think.
Being angry when a store clerk doesn’t understand your kid. Did I mention April is Autism Awareness month? Here’s a brochure.
Being thankful when they do.
How do you talk to your kid about being bullied in school? I was too. And there’s little you can say that makes it better.
Being thankful for the one friend (also with Aspergers) your child has and doing whatever you can to foster that friendship.
Experience the real impact of all of this on family dynamics and relationships. Did you know that everything you say at home will be repeated by your kid with Aspergers?

I guess I knew all of these things in a textbook sense, I had just never experienced them.

Which is the point.

I like to say that all of the incredible people and families I have known over the years have taught me. Thinking back, I now know that’s true, it’s just I wasn’t learning the real lessons they were teaching.

Sean Swindler, M.S.Ed., is the Director of Community Program Development and Evaluation for the Kansas Center For Autism Research and Training (K-CART). For K-CART Sean is responsible for the establishment of community partnerships and development of individual programs to respond to the needs of people with Autism. Before coming to K-CART, Sean was the Assistant Director of a community-based non-profit specializing in family advocacy and case management. He has also held positions with the Kansas State Department of Social and Rehabilitation, Division of Health Care Policy/Community Supports and Services, and The Arc of Douglas County, where he was support staff for the Self-Advocate Coalition of Kansas (SACK). Sean earned his Master’s Degree in Special Education with an emphasis on Transition, from the University of Kansas. He is the parent of a ten- year-old with Aspergers and a strong interest in collecting vintage Star Wars action figures.

All God’s Children: Celebrating Diversity in Neurology

By John Scott Holman —

I don’t get it. You got the Asperger’s and now everyone has it. Why is everyone talking about autism?

My younger brother isn’t exactly fluent in the politically correct vernacular of the autism community, which is why I found his question to be so intriguing. Sometimes it takes the unrestrained tongue of an outsider to make the “duh” statements the rest of us are avoiding. Autism was once considered a diagnostic death sentence; now a thriving autistic community is shattering stereotypes, surpassing expectations, and dazzling a world long darkened by ignorance and misunderstanding. The autistic community, however, is not without its share of disagreements, but we must remember that the very existence of the autistic community is a slap in the face to the doom and gloom prophesies of a society burdened by an “autism epidemic.”

I am autistic. Why is autism awareness so important? Because I’d like, for once, to feel that I don’t have to educate every person who wanders into my life. “Nice to meet you! I may seem relatively normal right now but I’m actually autistic and if you don’t want to end up really angry and confused by my behavior, I’ll need you to read this small stack of books, watch these videos, and really consider what you’re getting yourself into.” Yeah, that gets old...

Diagnostic labels, causation theories, and inventive lingo will always fall short of explaining the autism spectrum, because each autistic individual has their own singular opinions, experiences, and emotions. What if autism was not necessarily a disease or disorder? What if the commonly accepted social design, with its arbitrary laws and etiquette, imaginary lines drawn in the sand, and countless divisive ideologies, was simply tossed out? What if we started from scratch, constructing a society with room enough for all God’s children?

Many of you reading this are doubtlessly humming the tune of John Lennon’s “Imagine” and scoffing at my gumball sweet optimism. Well, I’ve been called much worse than an idealist, and as far as I’m concerned, you cynics can go smoke behind the bleachers with the cool kids. How many social revolutions began with the words, “I don’t have a dream...”?

The world needs all kinds of minds. Human evolution is dependent on our diversity. Hans Asperger said, “It seems that for success in science and art, a dash of autism is essential.” Why is the autistic mind so vital to the human experience as we know it? Because great minds do not think alike… they think differently.

Shortly after my diagnosis, I had the opportunity to view the work of celebrated artists at the Baltimore Museum of Art. I strolled, disinterested, past statues and tapestries, landscapes and portraits. Finally, I turned the corner and entered the contemporary art wing. I felt a slow, electric wave dance through my body, escaping out the ends of hair, which stood erect on my arms and the back of my neck. Kandinsky, Matisse, Picasso... this was art I could feel. I was ecstatic as I tried to divide my time and attention among each of the sparkling canvasses.

all-children I was drawn to an astonishing painting by Gino Severini, entitled “Dancer at Pigalle’s.” The figure in the painting was split apart by shafts of light, leaving swirling fragments of color, texture and sound... yes, sound! An exuberant music, the unlikely meeting of a French can-can and the Hallelujah chorus, vibrated in my brain. This music was not heard by my ears, but it was heard nonetheless, automatically, and through no effort of my imagination. If I closed my eyes, the music would rapidly fade.

I had experienced an overlapping of my senses before, though rarely had the sound of colors been so discernible. This phenomenon is known as synesthesia, and I now know, after some standardized testing, that I am constantly experiencing some form of it. I see letters, numbers, days of the week, even people, as certain colors and textures. The numbers zero through nine each have distinct personalities. Listening to Miles Davis in a perfectly dark room, I see geometric patterns in shades of brown and blue, moving, not with the music, but as the music.

I involuntarily retrieve masses of information by moving through synesthetic pathways. A certain color in my environment may trigger a kaleidoscopic catalogue of images from my prior experiences, each image continuing in an endless chain of sensory and intellectual information, a new chain adjoining each separate link, ad infinitum... This can make it very difficult to hold a conversation, as I often try to verbalize my every thought.

Mark Twain said, “The difference between the almost right word and the right word is really a large matter - it’s the difference between the lightning bug and the lightning.” My own writing is the result of carefully selected synesthetic impressions - words are chosen based on the compatibility of their individual colors, textures, sounds, etc... Words must not only convey the intended meaning, but meet strict sensory requirements. If met correctly, the words will be inextricably linked to a pre-existing mental landscape. I can develop this landscape wherever I am, and set it down on paper at a later time; the words on the page are nothing more than a crudely drawn map of this utterly private world.

Mozart spoke of “seeing” his music, “My subject enlarges itself, becomes methodized and defined, and the whole, though it be long, stands almost complete and finished in my mind, so that I can survey it, like a fine picture or a beautiful statue, at a glance.” Famous autistic Daniel Tammett has used his synesthetic mind Tammet to recite pi to 22,514 digits in five hours and nine minutes. Schizophrenia and epilepsy run in the Tammet family. Though recognized among the small handful of true savants alive today, Tammet has stated, “There are many things that I can’t do that most people can.... When I look at someone who’s hosting a party and they can talk to 100 people and they can remember all their faces, they can do eye contact and communicate flawlessly and fluently I think of them as a genius.”

How thrilling it is to entertain the infinite possibilities of the human mind! No two minds are alike. There are at least as many variations in human neurology as there are human beings. Yet people still expect others to be capable of thinking and behaving exactly as they do. Our prisons are overflowing with the mentally ill. Even those neurologically diverse individuals who pose no immediate threat to society are often ostracized for their differences.

A recent study by Kamila and Henry Markram offers a radical approach to understanding autism, which suggests that this “disease” is the result of an overactive brain, a brain continually processing such enormous amounts of information that daily life becomes a challenge. The Intense World Theory states that autism is the consequence of a supercharged brain that makes the world painfully intense and that the symptoms are largely because autistics are forced to develop strategies to actively avoid the intensity and pain. Autistics see, hear, feel, think, and remember too much, too deep, and process information too completely. The theory predicts that the autistic child is retreating into a controllable and predictable bubble to protect themselves from the intensity and pain.”

Indeed, history has repeatedly witnessed the scientific and artistic contributions of the autistic mind. The enormous impact of autism on human evolution cannot be disputed, yet the socially awkward catalysts of human progress have often been vilified by those who insist on social homogeneity. Where would we be if all humanity was more or less the same?

No one has it all figured out. This is the frightening yet liberating truth of the human experience. The blind lead the blind in pursuit of the light. We must love and share in order to survive. People need other people. We rely on the strengths of others to make up for our own weaknesses. Each individual mind is superior and inferior in its own way. While stumbling in the darkness of uncertainty, we cling to each other for support. In doing this, we come to realize that we all exist as one, each unique color merging seamlessly into the next along the human spectrum.

All Because a Teacher Met a Boy Who Was Different

By Principal Deb Donovan —

Once upon a time there was a Kindergarten teacher in Japan who met a boy who was different. This boy did not have a rhythm of life. He was up running around at night when he should have been sleeping. He did not eat a well balanced diet of healthy foods. He often refused to try foods that were hot or cold, crunchy or chewy. He could not speak and understand language the way his peers did. In fact, he did not seem to notice the other children in his classroom. He could not pay attention to the lessons and was not interested in playing with toys. His parents reported that he did not seem to show love the way their other children did. They felt exhausted in trying to help him and frustrated that he was not improving. Yet, they believed deep inside that their son could learn and grow if only they could unlock the pieces and put the puzzle together.

This boy was lucky enough to meet Dr. Kiyo Kitahara, a truly remarkable woman with vision, energy, passion and belief in the human spirit. Dr. Kitahara was fascinated by this boy and made it her life’s mission to discover the channels of learning for this child with what is now known as autism and for so many others who would follow. From that first encounter she embarked on an amazing journey that led to the development of the Musashino Higahsi School in1966; a school whose mission was to educate typical children and children with autism using the model we know today as Daily Life Therapy®.

Daily Life Therapy® is a unique educational philosophy that incorporates a broad and balanced curriculum including academics, art, music, physical education, computer technology and social education. There are three guiding pillars: vigorous physical exercise, emotional bonding and intellectual stimulation. These enable our students to take on challenges, learn to overcome obstacles and gain confidence from their own success. This enables our students to enjoy their family, community and all that life has to offer. As each of our students grow and learn, their personality and individual character matures allowing them to benefit from, and most importantly, contribute to society.

In the course of twenty years, The Musashino School in Tokyo would encompass kindergarten, elementary, junior high and high school divisions. As news of this methodology and success spread, Dr. Kitahara responded by establishing an International Division. This division enrolled children from the United States. This sparked the creation of the Boston Higashi School in 1987. Today, Boston Higashi School, located a in a suburban town just southwest of Boston on 55 acre campus, is celebrating its 25th year educating children and young adults with autism to learn to reach their full potential.

Currently the school has an enrollment of 130 students who come from not only Massachusetts but other states in the USA as well as other countries. The school offers both day and residential services and is accredited by the National Commission of Accreditation for Special Education Services to provide services to students on the autism spectrum from the ages of 3 to 22. Our children thrive in a caring environment that honors strong partnerships with parents, school districts, collateral agencies and higher education. Older students are engaged in employment education opportunities both on and off campus. We also boast of our famous Jazz Band that is comprised of approximately 20 students. Our band has played at famous venues such as Carnegie Hall and the Hokkaido Jazz Festival. Each year, the school hosts an Annual Celebration where the talents of every student are showcased on a large stage to an appreciative audience of over a thousand members from all walks of life. Autism doesn’t limit us because we embrace personal and collective excellence for one and all with enthusiasm while empowering others with an unwavering belief in the power of the human spirit. As we travel on this journey of autism together, we have set the compass of our hearts and minds to the highest intentions and are humbled and inspired by the path our students have opened to us.

Am I Autistic or Simply Human?

By Brian R. King LCSW —

I had the privilege of being involved in a dialogue yesterday that centered around the question, “Do you use Autistic Person or Person with Autism to describe yourself?”

This refers to what many people in the special needs community refer to as person first language. Insisting that the person comes before their challenge and therefore saying they have, in this case autism, is different than saying they’re Autistic.

The conversation that took place around this issue was very interesting and is very revealing about the power we place in how we allow words to affect how we see ourselves.

I wrote a book of poetry in which I reflected upon seeing the world through the unique lens provided by the mental wiring referred to as Asperger’s. The important thing to note at this point is that Asperger’s and Autism are terms created by the medical community to refer to a state of inferior functioning. A state of disease or dysfunction which, understandably, is a strong component in this debate.

The word, Aspie, or Autie are words I’ve heard used by those who’ve been given the label of Asperger’s or Autism as a way to refer to themselves in a more personal and less clinical way. I chose I’m An Aspie as the title of the book and as the name of my company in an effort to humanize the term for myself. However, I have since moved away from identifying so closely with that term as I find it limiting in that it doesn›t fully describe all that I am. I now think of myself simply as a human being.

Person first?

Ultimately the way a person chooses to refer to him or herself is a personal choice and an indication of how they presently see themselves in relationship to others and the world. It’s a window into their self-concept and the place they are in their journey of self-discovery.

I’ve met many who don’t care for person first language in referring to themselves. “I’m NOT a person with Asperger’s, I’m An Aspie,” they would say. They see Asperger’s as a large part of who they are and not easily separated out.

They see being “An Aspie” as someone else might describe themselves with phrases such as “I’m Irish” or “I’m a Christian.” You likely wouldn’t hear them say “I’m a Person with Irish traits” or “I’m a person with Christianity.”

It can be said that as with being Irish or Christian, cultural and religious beliefs affect how a person sees the world. Similarly, having traits referred to as the Autism Spectrum strongly influences the way I and others perceive the world and their relationship to it.

My Aspergian tendency to see things in a very concrete and idealistic way informs my values and my decisions. The creative way in which I write, speak and problem solve, everything that I am I can attribute in some way to the Asperger’s way of being that is part of who I am, but not all of who I am.

One person stated, “I want to be known as a person not an autistic.” Are you honestly less of a person because of a label. Would you defend your humanity by saying, “I’m not a man, I’m a human being and I expect you to see me that way?” Must it be either or, can you be both a man and a human being? Of course, it’s more a matter of which you give higher priority to.

What’s the big deal?

From the articles I’ve read and the conversations I’ve had, it appears to me that the special needs community is the only group (as far as I know) that insists on being referred to in this way. Some reasons for the preference of person first language are these:

On the one hand there are so many negative assumptions about the Autism Spectrum that being referred to as “a person with Asperger’s or Autism” provides a person with a way to say I’m just like you except for the Asperger’s part.

This perception may increase opportunities for inclusion among peers though I find it unfortunate that one would need to do so simply to be included. Unfortunate, but also an all too common reality isn’t it?

The more frightening reason is the thinking that if a person can be conceived of as separate from the Autism then it is justified in contemplating and even pursuing the objective of separating them from it and even eliminating the Autism completely.  

A dangerous belief

My greatest concern is that the more a person demands to be accepted as an Aspie or Autistic with phrases such as, “You have to accept me just as I am and I don’t have to change for you” the more they end up sabotaging the very thing they want - relationships.

What this belief states is that everything about me that’s different from you and keeps us from connecting needs to be embraced, accept it, we can’t connect with you. To believe and defend your right to be inflexible in the way you currently are is to defend the right NOT to grow and learn skills that every human being must in order to become more mature and skilled at navigating relationships.

I have not come as far as I have in life by remaining still, I have only accomplished so much by recognizing when my present skill set doesn’t serve me, then doing whatever it takes to learn what I must to get me where I want to be in life. Easy to do, no, but most worthwhile.

Cure, cure cure

There is a passionate movement in society that is pursuing the notion that Autism is a disease that a person has, that the person wouldn’t miss if it were gone. I hear these folks loud and clear and have spoken to many of them. It often comes down to the gut wrenching digestive issues or other experiences such as hypersensitivity to an everyday experience such as running water. These experiences that cause a child such torture that they are debilitated in everyday life. They are seeking an end to that level of suffering and I support that.

My concern is when the discussion doesn’t end there and moves into ridding the person of anything considered Autisic. I admit, being on the spectrum isn’t a bowl of cherries and I’ve worked to lessen some of my own sensory sensitivities to no avail. The human condition is ripe with endless opportunities to get stronger through the experience of ongoing resistance. Working to rid myself of every challenge in my life, sensory or otherwise, is a foolish endeavor. I overcome some, improve others, manage most and accept the rest.

One thing that pisses me off is when I mention that myself or my children are on the Autism Spectrum and a person’s first response is to whip out a card for their chiropractor or biomedical doctor and recommending I make an appointment. I could do a bunch of name calling and lecture those who do that but instead I’ll simply say this. When someone mentions his or her or his or her child’s autism, ask

“What is that like for you?” You may very well hear an answer that you wouldn’t respond to with “Here, this guy can cure your kid!”

Autism doesn’t always mean paralyzing debilitation, but for many it does. So take the time to find out what it means for the person you’re talking to.

What does it mean for me?

For me at times being on the Spectrum is an exciting place to be when my creativity is really in the zone, my quirky sense of humor often serves to enrich my life and relationships, my unique sensory experiences fill me up in such a way that it seems life couldn’t get any better.

Then there are times when I’m so overloaded that my brain can’t seem to make anything work including speaking coherently and in those moments I want to cry out, “Make It Stop.” Those moments for me, I am grateful to say aren’t the norm for my experience of Asperger’s. Especially now that I’m well beyond public school age where those experiences were the norm.

So what does this have to do with whether to call it Autism or a person with Autism? It has to do with the story I tell myself about these experiences. Do I say I have occasional meltdowns because of this thing I have called Autism, this dreaded monkey on my back that plagues me like a demon I’m possessed by (a perception some people have by the way)?

Or do I tell myself that in that moment I went beyond what my mind and body can tolerate and need time to regroup? Because like all people I can be pushed only so far before exceeding my threshold. How you respond to these moments is very personal depending on just how debilitating and frequent those moments are.

What does it mean to others?

At the heart of the push for person first language is in changing the perceptions of others. What does the term Autism or Asperger’s mean to them? After my then seven year old son and I were certified with the label Asperger’s I decided to share this news with colleagues who until that point treated me kindly and fairly.

After that I was treated like a mentally ill ticking time bomb and was called into my supervisor’s office at which time he bluntly questioned my sanity. I quit two weeks later.

It seems to me that it’s how others respond to the labels that we most fear and rightfully so. People are excluded and sometimes violently persecuted simply because they choose a religious faith that is in the minority in their country. If it were known by others that they were a member of that group there could be severe consequences.

A boy around nine years old I used to work with was terrified his classmates would learn about his Asperger’s because he heard how horribly they spoke about the special needs kids on the playground. He said, “I can’t let them know I’m one of them.” So I can see the real need for some to run from the label of Autism or Asperger’s.

The label isn’t the problem

What I’ve ultimately learned is this. We live in a world were people spend more time in a place of fear than in one of confidence. Our nightly newscasts (which I haven’t watched in years) are little more than the top list of who was raped, murdered or robbed today.

Our politicians want us to believe that all of the problems of our lives are the fault of those who disagree with them and if we side with them our lives will get better. If we don’t side with them we should be afraid of the consequences.

People can be afraid of everything that isn’t just like they are, neurotypical and Spectrumites alike. People use labels to identify the things they like and don’t like, this is good, that’s bad. It’s when we judge a label negatively that problems begin.

Someone who says you shouldn’t label people, labeling is bad, isn’t thinking that statement through. We label ourselves every single day. I’m a father, a husband, a social worker, a son, a friend an aspie but most of all I’m a human being. If there is anything negative or duhamanizing about any of those labels it’s because someone judged it so.

I’m tired of being afraid

It’s true that we live in a world where certain labels can mean the difference between inclusion or exclusion. We also live in a world where persistence can and has made a significant difference in changing minds when those who disagree take the time to talk and learn from each other.

I don’t want to be afraid to say “I’m An Aspie” or anything else for that matter. As I explained earlier, it is so instrumental in everything that I think and do that I can’t conceive of being me without the Asperger’s. Asperger’s isn’t something I have it’s something I am, in part. Saying you “are” something versus saying you “have” something makes a huge difference in how you see yourself.

There are so many things I am that make me who I am. I could say that I have children or I could say, “I am a father.” I could tell you that I have a wife or say, “I am her husband.” I could say I have a degree in social work or that “I’m a social worker.” Though the two phrases convey the same information they feel very different to me. The “I am” statements feel more meaningful, more powerful and more personal.

One person suggested that, “All labels take away the power of personal integrity. A positive label is still a label.” She added that a person should be referred to by their name and no other label. So let’s try this out.

“I’m Brian.”

“It’s nice to meet you Brian, so tell me about yourself.”

“Sorry can’t do that. I believe all labels whether positive or negative take away my power and personal integrity so I refuse to think of myself as other than Brian.”

“But how am I to get to know you Brian if I don’t know the things you like to do?”

“Because if I tell you I like baseball you may think of me as a baseball player or someone who likes baseball. Either way I lose my integrity so just call me Brian.”

It doesn’t work does it. What has worked for me is being very clear in my mind that I hold all of the power when it comes to determining what any label I use means for me. When I choose to think of myself as An Aspie it is up to me to explain to others what that means for me. An essential part of what being an Aspie means to me does not mean I am better than or less than someone else.

Yes I am Brian, Yes I am just me, but in order to explain more about what that means I am going to use the word Asperger’s and explain what that means to me as well.

In short, I’m a father, a husband, a social worker, a son, a friend, an aspie but most of all I’m a human being.

I have one last request of you. If someone is different from you please take the time to let him or her teach you about who they are instead of deciding for them based on your own opinions and assumptions.

More often than not, such conclusions are misinformed.

We’re All In This Together.

Turning Away from Closed Doors of Limitations to Opening Doors of Opportunity

By Dr. Stephen Shore —

Boom! The autism bomb hits the mark, spreading shrapnel throughout the lives of the individual on the autism spectrum, their immediate and extended families, friends, the community, and all involved in supporting people with autism. Expectations and dreams suddenly veer off course. What to do?

Like with up to 50 percent of individuals with autism (Hansen et al., 2008; Jones & Campbell, 2010; Lord, Shulman & DiLavore, 2004) the autism bomb struck me at 18 months with loss of functional communication, meltdowns, withdrawal from the environment and self-abusive behaviors (Shore, 2003). With so little known about autism in the mid 1960s, my diagnosis of strong autistic tendencies, atypical development and childhood psychosis by the James Jackson Putnam Children’s Center was given a prognosis of lifetime institutionalization – employment in a sheltered workshop if I were lucky. My parents worked to make sure that did not happen.

Well… I did end up spending time in a couple of institutions – of education. Boston University where I got my doctorate in Special Education was one, and my current “institution,” Adelphi University where I focus my efforts on improving the lives of individuals
on the autism spectrum.

Turning away from closed Doors and Stepping Through the Window of Opportunity

Ahead of their time, my parents advocated on my behalf and convinced the Center to take me in about a year. Although the diagnosis was devastating to my parents, they quickly implemented what today would be termed as an intensive home-based early intervention program emphasizing music, movement, sensory integration, narration, and imitation.

Rather than following the paths of behavioral and/or pharmaceutical solutions the approach my parents took resembled the developmental methods of today such as the Miller Method (Miller, 2007), Floortime (Greenspan & Wieder, 2009), and Relational Development Intervention (Gutstein, S., Baird & Gutstein, H., 2009). Purely through parental instincts my parents gave me what I needed as opposed to attempting to fit a square peg into a round methodological hole. Perhaps my parents’ approach most closely resembled the SCERTS methodology of after fully assessing for a child’s needs, a program is assembled from existing techniques to provide the best support possible
(Prizant, Wetherby, Rubin, Laurant, and Rydell, 2006).

At first my parents tried to get me to imitate them – but without success. Rather than staring at the closed door of getting me to imitate them, my parents stepped through the window of opportunity by imitating me. As a result I became aware of their existence and progress began.

By age 4, speech was beginning to return and I enrolled in the James Jackson Putnam Children’s center with an upgraded diagnosis of merely being a neurotic, rather than a psychotic child. Things were looking up.

Although my parents did not realize it at the time, they heavily influenced my research agenda of comparing different approaches for educating children on the autism spectrum with the goal of matching practice individual needs. The topic of matching practice to needs shall be explored in future issues of Autism Brainstorm.

Buying a Ticket Out of Perseveration Station and Taking the Train to Successful Employment

Taking a sharp steak knife I would pop the back off a wristwatch, unscrew the tiny bolt attaching the watch motor to the stem used to wind up the watch, and then be lost in a world of miniature gears and springs. Nothing was better than the micro world of watch motors where things made sense. Curious about this ability my parents soon supplied other devices to disassemble – and made sure that I got them back together again with no pieces left over and still in working condition!

Rather than considering the fascination of disassembling watches as aberrant or even as something to use a reinforcement for good behavior, they supported the interest and shaped it into something that led me high school and college employment as a successful bicycle mechanic to
the point where I even had my own repair shop!

Using interests and strengths as guideposts for determine meaningful employment for individuals on the autism spectrum is another important area that will also be explored in my future contributions to Autism Brainstorm.

Conclusion

Originally, an autism spectrum diagnosis was considered as a destructive bomb shattering lives and ruined expectations. Fortunately my parents were pioneers in looking at what I can do rather than perseverating on the limitations of having autism. Society is catching on this concept. Organizations such as Specialisterne in Denmark where the founder’s goal is to have a million jobs worldwide for people with Asperger Syndrome focusing on the strengths and abilities people on the autism spectrum do have.

Rather than considering autism as a destructive bomb, Autism Brainstorm will encourage us to turn away from closed doors of limitations to open doors of opportunities as autism becomes da bomb.

Stephen Shore, Ed. D.
Assistant Professor of Special Education, Adelphi University
Internationally renowned author, consultant, and presenter on issues related to the autism spectrum

References

Greenspan, S., & Wieder, S. (2009). Engaging autism: Using the Floortime approach to help children relate, communicate, and think. Cambridge, MAL Da Capo Lifelong Books.

Gutstein, S., Baird, C., & Gutstein, H. (2009). The RDI Book: Forging New Pathways for Autism, Asperger’s and PDD with the Relationship Development Intervention Program. Houston, TX: Connections Center.

Hansen,R.,Ozonoff,S.,Krakowiak,P.,Angkustsiri,K.,Jones,C.,Deprey,L.,Le,D.,Croen, L., Hertz- Picciotto,I. (2008). Regression in Autism: Prevalence and Associated Factors in the CHARGE Study. Academic Pediatrics.8:25-31.

Jones, L and Campbell, J. (2010). Clinical Characteristics Associated with Language Regression for Children with Autism Spectrum Disorders. Journal of Autism and Developmental Disorders, 40: 54-62.

Lord C., Shulman C. & DiLavore P. (2004) Regression and word loss in autistic spectrum disorders. Journal of Child Psychology and Psychiatry 45, 936.

Miller, M. (2007). The Miller Method: Developing capacities in children on the autism spectrum. London: Jessica Kingsley Publishers.

Prizant, B, Wetherby, A., Rubin, E., Laurant, A, & Rydell, P. (2006). The SCERTS model: A comprehensive educational approach for children with autism spectrum disorders. Baltimore, MD: Paul Brookes Publishing.

Shore, S. (2003). Beyond the wall: Personal experiences with autism and Asperger Syndrome. 2nd. Ed. Shawnee Mission: AAPC Publications.