Re: MSNBC report on Autism and Mainstreaming

The MSNBC report advocating for the mainstreaming of autistic children was somewhat misleading. Even though they briefly note at the end of the piece that all autistic children are not good candidates, they fail to note what percentage of these children would in fact benefit from this kind of approach. The number of autistic children who can thrive in a mainstream environment is distinctly in the minority.

Autism is a spectrum disorder and to make such a broad statement about the benefits of mainstreaming is a touch irresponsible. Kieran, the subject of their piece, was not diagnosed as autistic until he was four years old. This indicates to me that he is mildly autistic at best. Given his less serious condition, it is not surprising that he would do well.

They correctly noted that success in these endeavors requires a “team effort”. They seemed, however, to gloss over the fact that Kieran’s parents obviously had the financial wherewith-all to allow the mother to leave her job and instead work as a yard parent. This is clearly not something most parents in this situation could consider.

My chief concern is that the pressure to mainstream a special needs child is frequently a beard for budgetary considerations. Their report risks diminishing the need for special education funding by suggesting that mainstreaming is the more responsible and effective course. The “push” towards mainstreaming is a step away from full funding of special needs classrooms, which is constantly at risk.

Additionally, the piece seems to advocate for this unsupported “dietary” treatment. This theory has no scientific basis in fact. While diet is important for any emotionally challenged child, there has never been a scientific connection established between gluten and autism. As parents of autistic children we often feel un-empowered and these specious theories simply feed our need to achieve some measure of control. In my experience the better course includes behavior and physical therapies (which they noted that Kieran also receives). These likely have much more to do with his social and functional successes.

I am gratified that more attention is being paid to these children. But it is very important to tell the most complete story possible. My wife and I have taken care of our autistic daughter for the past nineteen years. As she entered the middle and senior high school programs we discovered that many of her early successes were at risk because of the pressure towards “inclusion” (mainstreaming). The difference between an elementary school and a high school environment can be like night and day. As our daughter entered high school, we began to face new and much more challenging issues. Mainstreaming would only have exacerbated these conditions. Another of my concerns here is that by advocating for inclusion in the early years, we put our children at risk as they begin to age out of the system, instead of putting in place reasonable and effective programs to support them as they enter the world at large.

While I am also gratified that Kieran is doing well, my first job as a caregiver is to advocate for my daughter (and children like her). My wife and I are nearing the far side of the education system, but many parents out there are just beginning to enter this very intimidating world. They deserve the best information available in order to make informed and realistic choices for their children. I think their report would have benefitted from some more careful language and by some fact checking. Autism is a big word, and it is a word that we are only just beginning to define.

on baseball (for jack)

between pitches

we discover something

about ourselves

between innings

the crowd rises, falls

between the smell of grass

and the heat of the mid-day sun

between batters

we sit in that place

learning to listen

begin and end

in those moments

we glimpse something eternal

in those moments

when the game is on the line

when the game is beyond the pale

young men stand

old men watch

women wait

children laugh

and in between

the game is defined

by silence

The Humans are not at home

The truth is always somewhere in the middle. It exists in the middle ground between how you see the world and how the world sees you. And so, assuming you are self aware and that truth is something you value, this becomes a useful rule. By defining your position and that of another person you can calculate the middle-ground. This should put you damned close to what passes as true. I do not believe for a minute that this rule is absolute, there is no such thing in practical terms. It may be helpful though, for example, if you are trying to map out how you got where you are or more importantly, how you are going to get the hell out.

Now, to me, the truth can be a difficult place to hang. I am bombarded every day with truth of some  blog or broadcast. What is true in the New York Times may be respun by the Manchester Guardian. Technology allows for so many different versions of what is true, or maybe what we wish were true, that we need to establish reliable sources and verify our versions of the truth through some kind of external review process. At the same time we must also consider the conditions that affect that point of view. Two major conditions are Style and Agenda. Remember, lies are always wishes. I believe Jeff Tweedy (of the band Wilco) said that.

Beauty is, of course, truth, but then again so is ugly (or for that matter, horrible). For the majority of my life my version of “truth” usually consisted of something wholly personal. This was certainly the case during my childhood. But we may be (or should be) forgiven for what we carry with us. Those things are for the most part reasonable under the circumstances. Even the vile crap from our infancy and the baggage picked up during adolescence is carried for a reason. If nothing else it acts as a key to our neurosis. I came, at some point, to see that this idea of a “true middle” allowed me to live in the world with a minimum of pain and disruption and still connect to the parts of the world I might have written off.

Because I had grown up poor, I spent the majority of my childhood fighting to get into all the places I imagined I had been denied access to. I felt it was my responsibility to tear down all of those “barriers to entry” and force my way (if need be) into the halls of privilege. At the time I kidded myself that I was doing it for the benefit other people. After years of this kind of pointless struggle and grief I came to the conclusion that it was all bull. Most of the things I has railed against were simply not real and the ones that were I soon realized (usually) had simple solutions. There was a lot of wasted effort during that time but also some degree of education. I began to learn that anger had fueled most of my difficulties. As a young man anger had had its place too, but in the long run it seemed to serve me only symptomatically. It would rise to the surface as a warning that all was not well. The mistake, or rather the sad truth, was that after prolonged exposure to this state of mind, we come to take comfort in it. This is a dangerous condition that is difficult to heal.

It wasn’t until something happened that truly required my attention and effort that I found out what was worth fighting for. I was thirty-three when my daughter was born and almost from the beginning we realized that caring for her was not going to be as automatic as our son (my stepson) had been. She began to exhibit signs very early on that something was not quite right. She was not at ease in the world. While she was a happy baby, she was moody and quick to change. My wife dealt with these demands as well as anyone could hope, but before long the task became overwhelming and just after she had turned two years old we were told that our daughter suffered from a pervasive development disorder. Our daughter was autistic.

Needless to say this floored the both of us. For myself I can say that at the time I was experiencing a new emotion every other day. I would blame myself and twenty minutes later try to avoid any responsibility whatsoever. During periods of relative sanity my wife and I began the daunting process of getting our daughter the appropriate medical and educational support. The first obstacle to this process was our own naiveté. We believed at the time that the HMO’s (Kaiser) and school administrations (SFUSD) were there to do the right thing by our daughter. Not even close.

Initially the doctors at Kaiser Medical in San Francisco had ignored or plain missed the diagnosis. This resulted in months of unfortunate and potentially disastrous delay in getting her critical therapy. My daughters pediatrician was not involved in the initial diagnosis. He was on some kind of vacation or hiatus but gratefully another pediatrician who was filling in noticed the behavior and immediately brought it to our attention. What followed were nineteen years of finding our way through the dark. It was all about trial and error, faith, and in the end forgiveness, while slowly moving forward.

The Joy of Autism

Margot at the Wedding

Katie stood in the doorway, frozen in place. Her arms hung poised and stiff, her fingers flicking out ecstatic rhythms. Her low monotone chant methodically repeated, endlessly replaying ancient conversations, unshakable ghosts from her childhood. This mornings particular chant seemed to signal a shift; a less hostile, more playful tone. No angry ghosts. She wheeled suddenly from her static pose and ran the length of the hallway, laughing fiercely, the sheer joy of a much younger child erupting from somewhere deep inside.

It had been a difficult Fall. Her entire school career had been defined by various traumatic episodes and rejections, but high school had proved the most difficult by far. Her recent placement at the “Mac” school had seemed a god send, but in reality it turned out to be more an institution than a school. It was a unique place full of dedicated people, a hybrid school and clinic that combined the critical aspects of a hospital with the bare academic attributes of a high school.

Alicia rose from her late Saturday morning bed with a smile and a kiss for Katie. “How did you sleep baby?” She asked gently caressing her face.

“It was okay.”

In fact Katie had barely slept. Lately she had begun to rise early as her mood had cycled through the various high and low states. I looked up from the computer and blew a kiss to them. They were standing in the entry to the hall with their arms draped around each other. Katie was smiling and cooing in her rigid loving way.

“Have you had your meds?” Her mom asked gently kissing her rosy cheeks.

She nodded and smiled. “I did.” Turning away, Katie raced back into the hall returning to her earlier play, her powerful laugh obliterating the quiet of the morning.

On her last birthday Katie had turned eighteen. These anniversaries were especially important to her, critical milestones on a very long road. The math seemed especially to enchant her quick precise mind. She often recites each birthday from the present until that vague point in the future beyond which she can not imagine. She looks forward to these dates, allowing her to register some certainty in an uncertain world. As punctuation to these monologues she always performs the necessary calculations, how many years to go, how many since, offering her some measure of her reality.

“What are we going to do today?” Katie asked, already knowing the answer. These outings, when she can manage them, are well rehearsed and scripted out days in advance. Her mom looked up from her morning coffee and recited the itinerary for the day.

“Well, first we will all take our baths and then we will have some breakfast. Next we will get dressed and then we are going out to see a movie!”

“Where will we have lunch?” Katie asked with special anticipation.

The medication Katie was on was especially hard on her metabolism, causing her appetite to dominate her experience. As milder medications had become available over the years the severity of their impact on Katie had eased up somewhat. This unabated hunger had simply become how Katie defined herself, yet another way she had been forced to measure the world.

“We will get Subway and then we are going to see a movie!” Her mother recounted as it had been rehearsed many times before with an emphasis on the word ‘movie’.

“Yes.” Katie agreed in her fierce monotone.

It had actually been Katie’s suggestion that we go to a movie. She had been planning out our schedule for the upcoming weekend as was her habit when she made the suggestion. This was something of a sea change for Katie. Going to a movie was a huge risk. It involved a massive potential for chaos. But this year was very different on many levels. Katie was changing, growing up, and that often meant opportunities that might prove both positive and negative. Over the years we had learned to take the good with the bad.

So, on her highly unusual suggestion that we go to the movies, her mom proposed that we see the new Noah Baumbach film, “Margot at the Wedding”. This was a film we had been trying to see for a few weeks and it seemed like a good opportunity. Katie had seen and enjoyed his previous film “The Squid and the Whale” many times on DVD. I remember that we sort of looked at each other somewhat dubiously but decided to give it a try. So it was settled and once agreed upon could not be altered without a great deal of distress.

Later that day we left the flat and after getting lunch at the local Subway Sandwich Shop, we made our way to the Embarcadero Center Cinema. We purchased tickets, popcorn and sodas, and settled in to the section in the rear of the movie house. These were our usual seats, close to the rear exit and in an area with the minimum of competition and a maximum amount of privacy.

During the week, while Katie was at school, we were occasionally able to catch films at this theater. We would take advantage of Alicia’s extended lunch periods, a result of having to work split shifts at her job. It was a requirement for full-time employees where she worked that they accept split shifts. This resulted in a nearly twelve hour day, but as it happened it also allowed us to occasionally take in a movie during her lunch break. The local Indy film house was near by her work, and we found that, depending on the film schedule, we could frequently see movies that we might otherwise have had no time for.

We settled in to the seats and began watching the previews. I was sitting on the aisle with Alicia in the middle and Katie beside her to the inside. This seemed the best arrangement as Katie would occasionally become distressed when forced to interact with others in such an uncontrolled social situation. As it happened there were relatively few other people at this showing. This alignment would allow us to control her responses and to monitor her mood as things progressed.

The film began and almost immediately we recognized that this story was not in the same vein as The Squid and the Whale. Where Squid was a charming if somewhat uncomfortable look at the deconstruction of a modern family, Margot was really a character study with a dysfunctional family as subtext. This would have been merely a point of mild discomfort if it weren’t for the inevitable sexual complications. Almost immediately we became aware of the understandable, but severely inappropriate nature of the relationships among the various family members. I looked at Alicia who was already aware of Katie’s elevating mood. She seemed to be growing restless. The problem here was that the dye was cast and to have ended the outing at that point may have resulted in a cascade of emotions that could easily spiral out of control. Alicia looked at me and we simultaneously shrugged. What were we to do at this point? Should we risk a long term break down by asking Katie to leave or should we risk finishing the film?

I usually lean towards seeing these things through, gambling the long term benefit of having completed an outing with questionable content versus the experience of failure, which often crippled any future possibilities. Alicia seems to judge these things on a case by case basis. We were in the middle of this silent debate when suddenly it happened.

Katie stood up half way and yelled aloud that she wanted to go now. As Alicia turned towards her to comfort her, Katie’s fist slammed into her head full force. initially Alicia recoiled from the attack then recovering quickly, began immediately to usher Katie out of the Theatre. I remained behind briefly in order to gather our belongings and followed behind as quickly as possible. I discovered that Alicia and Katie had left through the rear entrance and were collecting themselves just outside of the theater in preparation for the return home.

Alicia was understandably distressed and Katie was at first inconsolable. As we walked along through the sterile and nearly deserted buildings of a downtown condominium complex we attempted to diffuse the situation. We began by speaking in calm tones about how inappropriate the attack on her mother had been. We further explained that while her response to the film was understandable, her actions were not. All the while an overriding sense of guilt and helplessness blanketed us like a pall. These kinds of set backs were frequently impossible to recover from. Katie had in the past absorbed these events only to throw them back at us in the form of some relentless diatribe full of fierce self recriminations. As we continued walking Katie cycled up and down from anger and resentment to fear and absolute sorrow for her actions. She had struck out against the only target she could manage, her mother, whom she loves dearly. We eventually calmed Katie down and slowly made our way home through the busy streets and bustling cafes of North Beach.

Many months later it came to me that, in this case, as in so many, we had simply done our job. We had given Katie a chance to put herself out into the world. This meant that we had put her, to some extent, in harms way, but with a certain climate of control. This, we had come to realize over the years, is often the best that you can do for people who are challenged in the way that Katie is. The joy of raising someone with Autism (or any kind unique challenge) has at least one thing in common, sacrifice. Sacrifice is common to all parenting, with or without children of special needs. But to people whose challenge includes the time, work, and patience necessary to make a real difference in a disabled persons life, sacrifice must be its own reward. Realizing the greater good that results from this kind of sacrifice becomes an act of unqualified joy; the Joy of Autism.

Art in the spring

I have been invited to be in a show in April. It is the Pan Opticon in North Beach and it includes some noteworthy San Francisco artists, like Lawrence Ferlinghetti, Jack Hirschman and Matt Gonzalez (If you don’t already know, Lawrence is the Beat-era Writer and Poet who published Allen Ginsberg, Jack Kerouac, and William S. Burroughs and who also co-founded City Lights Books, Jack Hirschman is the San Francisco Poet Laureate painter and activist and Matt Gonzalez is running this year with Ralph Nader as a vice presidential candidate)

I am very proud to have been asked to be in this show. It is a much needed opportunity for local artists to get together and compare notes. It will also be an opportunity for some ggod food and wine and great conversation. There will be over fifty artists.

In addition to the show, our family is looking forward to going to see our son Derek graduate this spring from the Tisch school at NYU. It is quite an accomplishment and we are very proud of him. He also recently received a paid internship at Habitat, a children’s museum in Berkeley. Go Derek!

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