Medical Racism

Today was World Autism Awareness Day, sparking an international movement of lighting it up blue! But a haze of gloom encased the blue beacon as one doctor revealed that the light of hope in an autistic child's prognosis has a dimmer installed, and the light either shines or flickers thanks to the socially constructed benefits of race and education.

Claire McCarthy, M.D., reported the study's findings on Huffington Post, which were originally published in the journal Pediatrics. Exploring the cases of 6,000 autistic children enrolled in the Department of Developmental Services for California, a common thread was found in children who performed better following treatment: their mothers were white and well-educated, and were not receiving services from Medi-Cal.

Drawing from the school of Environmental Racism, this could be termed Medical Racism: obviously those families who are on government assistance such as Medi-Cal are less likely to receive high quality medical care, and it goes without saying that unfortunately, the majority of lower SES families in low-income neighborhoods are less likely to go to college, less likely to get a high paying job, and more likely to be placed on government assistance programs. It also goes without saying that the majority of these individuals happen to be minorities.

There are many obstacles that these groups face in terms of receiving treatment for their children. First, even if high quality providers of care were covered by Medi-Cal, not many are housed in or around lower SES neighborhoods. Transportation to and from these facilities create a problem as many families do not have cars or cannot presently afford the gas. Second, the coverage from Medi-Cal probably provides minimal hours of treatment per week, possibly 3, whereas private facilities have been known to get insurance companies to cover 10-15 hours of intensive treatment and additional hours from other entities (Lovaas, the founder of ABA, recommended as many as 40 hours for optimal improvement, basically stating "the more the better"). Third, many lower SES families have limited resources and no understanding of their rights, benefits, and assistance programs for having an autistic child, therefore they don't know where to turn or who to ask for help. Most are left with horrible services without knowing how much more they can get.

Though insurance companies are now required to pay for ABA services, Medi-Cal is usually not tied in with companies such as Blue Shield or Anthem. They pay for Regional Center services, and, as with everything else, location is key. One family who recently discovered their child is autistic, resides in one of the downscale areas of Los Angeles. Referred to Regional Center services, they are zoned to seek services from the South Central Branch. Having the reputation of being more frugal with their support, the outlook for the child is not bright. A lower SES agency in a lower SES area is a recipe for lower care, lower qualifications for employees, lower budgets, and lower motivation to fight for these kids. However, regional centers like Harbor, Pasadena, and in cities in Northern California, are more likely to provide higher qualities of care to their clients.

Many parents without education or guidance do not know that under the IDEA law, school districts are required to provide many services these children need, such as ABA, speech, and occupational therapy. If they cannot provide adequate services themselves, they are required to pay out of pocket for the parents to receive services elsewhere. Unfortunately for the lower SES families, even if they are aware of this law, they have difficulty getting quality care. They are unaware that they can request more, and when they do, they usually have a long enduring battle to fight with the district that typically ends in going to Due Process. Of course, the parents lack the resources to retain a lawyer, and they usually retreat from the field, accepting whatever the district throws at them.

Blessed by the opportunities society has afforded them, white mothers, who start out lost like any mother just given their child's diagnosis, typically have more resources to seek information: internet access, access to high quality medical care referrals, finances to pay for services privately, to pay for lawyers to get more services, etc. But does this mean that because of a socially unjust system in our state that children of minorities should not be afforded the same benefits and access to care? As we have so many times in the past, are we now spreading that racism to special needs children who don't know any better and suffer because of it? Are we telling our children that because of the color of their skin, or the misfortune of where they were born that they don't deserve to have a future? To get better? The face of autism is not that of a white child. They all deserve a chance.

A Mother's Guilt

It is an emotion that many parents, mostly mothers of autistic children struggle with, some openly, others hold it within, but it remains their self-induced cross to bear: guilt. The guilt of a mother, whom, through her own eyes believes she brought this curse upon her child, becomes all-encompassing. As most mothers do when their child becomes ill or when their child is somehow harmed, the mother of an autistic child asks herself, “what did I do wrong? What could I have done differently? How could I have done that to him?” Through the eyes of a tortured mother, she looks at her child and sees her destruction, the pain and suffering their child endures. But what if she looked at her child through their eyes? What if she could see their world, understand them and possibly find the path to forgiveness?

I think it’s plainly clear what “mistake” we’re talking about here, and many mothers have probably played the scene out in their minds over and over: that fateful day when you strapped your happy, bubbling baby into the car seat, and drove down to the doctor’s office. You cuddled and soothed your child as they were first pierced with that thin steel and injected with a trusted serum that was meant to protect them from crippling diseases that could ruin their lives. And shortly thereafter, you watched the child you once knew slip away, replaced by an affectless shell. It’s a traumatic experience for any mother to live through, and self-blame is not far behind. Now, many mothers attest to the fact that their child did not begin to show symptoms of autism until they received their shots, and although there is absolutely no scientific evidence to support the notion that vaccines alone cause autism, we cannot fully rule out that vaccines may play a role. While the jury is still out, evidence is being presented that suggests viruses might be the cause, transmitted through the vaccines. More evidence is coming in support of a genetic basis as well, and there’s a good possibility it might be a combination of the two, perhaps that the genetics lay the foundation for autism and wait to be triggered by some element of the immunizations. But for guilt-ridden mothers, whatever the cause, in their minds nothing changes the fact that they allowed their children to be given these life-altering shots.

For years we’ve been told these shots are critical to the health and well-being of your children. The government, the FDA, medical boards, and doctors have all sworn to the benefits of vaccines. No child can enjoy public education without them. And so many children have been vaccinated with no health ramifications at all. Why would any mother doubt them? The reality is immunizations have become a crap shot, some kids develop autism, some don’t. If you don’t vaccinate, you risk other life threatening illnesses. These mothers made what is becoming a most difficult decision with unfaltering trust in their pediatrician. It was this false confidence that ultimately laid the burden on their shoulders. Though all rationale argues against their self-inflicted torture, a mother’s heart does not work in rationality.

I personally do not have any children, let alone an autistic child, but I can fairly imagine the pain a mother grapples with on a daily basis; I’ve seen it deeply lined in the weathered faces of parents just praying for some semblance of a normal life for their child. For many parents, that life is a fantasy; autism is the death of a dream. Every parent has that dream, a collection of hopes and wishes bridled with anticipation and excitement. Their first words, their first steps, that first time you hear I love you, sports, activities, school assemblies, college, and building families of their own are milestones that should have been guaranteed. For parents of autism, the guarantee fell through. Dreams of the future turn to just trying to survive a day in the life of their child, the loss of hope turns into a deep and constant ache.

Mourning the loss of this dream and trying to cope with their own pain, parents are doubly weighted beneath the pain and frustration of their child. Tantrums and fits, constant repetitive behaviors that interrupt their daily functioning, physical pain, frequent illnesses, limited means of communication, and isolation are all burdens the autistic child can carry. Being in pain as a parent is immeasurable compared to watching your child in pain. And the self-blame continues. Parents, mothers, look at their children and think, how he suffers, look how sad he is, look how she screams and cries, my poor baby, this is no life for them.

I often wonder, however, if these children are as miserable as we think they are. Yes, there are hardships and burdens thrust upon them, at very young ages, no less, but do they know any different? Can you truly miss what you never had, what you never knew could be? I think about people, adults and children alike, who have had some unexpected circumstance befall them, whether an injury or illness that changed their lives or an anomaly that affected them since birth, which made their lives exceedingly more difficult. How often we look at these people and pity them, thinking, that poor man, now stuck in a wheelchair;, that poor baby, how will she overcome that deformity? And yet, time and time again we click on the TV or the computer and see some inspirational story of someone overcoming the odds. They’ve learned to survive, they’ve learned to succeed, shattering their obstacles, and the one constant, resounding message is “I don’t feel sorry for myself, don’t feel sorry for me either”. They found the light in a place of darkness, and don’t think your child can’t do the same, that they don’t do it every single day.

In my time, I saw many children angry, frustrated, scared, and in pain, but I also saw the good moments: dancing and singing for no other reason than their own joy; laughter, whether or not anyone else got the joke; play time on a swing or a trampoline; a quiet peacefulness with a coveted object: a favorite blanket, a puzzle, a stuffed animal, tiny pieces of paper to toss in the air and watch float gently to the floor; those fleeting moments where they’re able to let others hold them, cuddle them, and squeeze them. The simple things make any life worth living, including theirs. In spite of the hard times, I don’t believe any of these children would choose death over their own existence. Many of them wouldn’t choose a cure over their life; as so many higher functioning individuals argue, they are happy as they are. Another child classified as severely autistic, when finally able to communicate with her family via computer, expressed a desire to have the same experiences as ‘normal’ kids. She wrote that she wanted understanding from others, to be accepted for who she is, idiosyncrasies and all, but never said she wished she wasn’t autistic.

As parents, the pain of having a sick child can consume you, and you can project that pain onto your child, believing that they must be suffering tragically when in reality it is your suffering you need to overcome. You see your children’s pain; you struggle with the guilt in believing you caused it. But in reality, these kids are made of steel. They get up and face the day, they endure the bad times, and they find happiness in the good ones. Are their lives the fairy tale we all wish our kids’ lives could be? No, but they are much stronger for it, and they don’t need pity. They have and will continue to thrive. Draw on their resilience, take a lesson from your little ones; they’re playing the hand they’ve been dealt, why aren’t you?

“Keep your face to the light and you cannot see the shadow”- Helen Keller

Sensing Our Surroundings

To see, touch, hear, and move about are the key elements we have to explore the world around us. Each sense has its own crucial function, and as stated in the last blog, each experience is transmitted to the brain through a course of nerves and synapses. Those who lack or struggle with one sense usually find their others to be strengthened. I am partially deaf, so I find myself relying more my vision, or rather my visual observation skills, to compensate. For autistic children, you will usually find that they too have certain dominant senses which overshadow the others. As they come to rely on these dominant senses to explore their world, they often ignore the weaker ones, which can result in exacerbating their symptoms.

One of the newer arguments (or rather, an older argument that’s finally breaking through) presented by Dr. Michael Goldberg is that autism is caused medically by a virus. The virus often times spreads through the brain linearly, from front to back or from side to side. The front of the brain is comprised of what’s called the Broca’s Area, which is responsible for speech production and can determine whether your child is verbal or not. The back of the brain is the occipital lobe, responsible for visual processing. Either side of the brain is where the temporal lobes are located, and where the Wernicke’s Area is housed, which is responsible for auditory processing: interpreting and understanding language, which also determines speech ability (if you can’t hear it, you can’t replicate it). Thereby, where the virus lands drastically affects the senses and creates a dominance.

I recall in the beginning of my practicum, my supervisor told me she could spend one minute watching a new patient and figure out their dominance. I sat there thinking I hope I can do that one day, as she assured me we’d pick it up soon. Determining your own child’s dominant senses is usually not hard, especially when you spend far more time with them than we clinicians do. Making it simpler, however, is one thing my clinical supervisor hammered into our heads: that it is almost certain that verbal children’s dominant senses are auditory and kinesthetic (movement). Children who are non-verbal are visual and tactile (touch). It is not often that you find a child with dominant olfactory and gustation (smell and taste). But, if you’re unsure of these textbook findings, you can easily gauge your child’s senses by simple observation. If your child spends the majority of their time staring at moving objects or brightly colored flashing lights for prolonged periods of time, tries to rewind or fast-forward videos over and over again while watching the movie or clip, or flicks their fingers in front of their eyes while staring at something, they are visually dominant. If they prefer to touch several things such as soft fabrics, beaded items, or play-doh, they’re tactile. Those who run back and forth, jump, climb, flip about are kinesthetic. Others rewind or fast-forward videos or music to listen to the dialog and memorize the lines in order to script them. These are the auditory sensors.

At times it can be difficult to clinch your child’s dominance. Sometimes you will find that your child is engaging in an activity that can stimulant two senses at once, and only through careful observation can you conclude the purpose the activity is serving. For example, one patient I worked with used to take objects, hold them loosely against the wall with one hand and tap it with the other. We struggled with it; was the tapping tactile, feeling the rapid repeated connection with the object under his fingertips? Was it auditory, listening to the knocking against the wall? Noting that he was non-verbal and that auditory stimulation was not empirically likely, and after observing other behaviors, eventually we determined it was tactile. Another patient had a preference to take a small stack of thinly cut strips of paper and flap them. Many clinicians stated that they believed she flapped the strips as a visual stim, however I had been observing her for months, and noted that while she flapped the strips, she never looked at them. She held them out to the side at an arm’s length and flapped while looking in the opposite direction. It was then I realized that she listened to the sound of the papers. Likewise it may be difficult to determine if your child is visual or auditory when they’re watching videos, but if you watch carefully, most times those with auditory dominance allow their eyes to glaze over, or do not even look at the screen when it’s playing because they’re focused on the sound.

It’s important to realize that your child will probably engage in behaviors satisfying all senses, some auditory/kinesthetic children still like to watch videos and will stare at them. Some visual/tactile children will pace and flap their arms. But you will undoubtedly notice certain behaviors happening far more frequently than others, and the dominance will shine through.

Knowing your child’s dominant senses can be helpful in many respects, especially in teaching them new things behaviorally and academically. Utilizing their strongest senses will increase communication and provide a reward system to keep them motivated. If I had a patient who was auditory and kinesthetic, I would sometimes make up songs for various lessons, like the vowels or nouns, and then provide frequent small breaks where the patient could get up and move and run around as a reward. Other times I focused on one dominance. For example, a child who is predominantly kinesthetic may need movement in order to focus. One tactic I frequently employed in the clinic was running. If I needed a patient to spell a word for me, I would ask, wait for the correct response, and then we would run. Sometimes the game evolved into hide and seek, where I would duck into other offices, let the patient find me, then I would request the spelling word again and continue the game. Other times we incorporated a ball that we could run and kick. The movement kept them focused, the reward was the game.

Bear in mind, though, my previous blog: satiating a dominant sense for a child usually triggers stims. You must be mindful of the senses you’re working with and the rewards you’re providing. For a child who was auditory, singing a made up song to teach a new concept was beneficial, but we soon learned showing educational music videos on YouTube increased stims and scripting. A child who is visually dominant may work for the reward of watching a video, but the video may increase hand flapping or even cause a seizure. Sometimes you may provide a reward, but after receiving it, the child will stim so much on it that they will refuse to relinquish it to return to work. When working with your child, carefully observe them, note their reactions, are they focusing or stimming, will rewards keep them motivated or interfere?

While it’s helpful to incorporate the dominating senses to work with your child, do not fully neglect the weaker senses. Your child’s brain can be trained to strengthen the senses that need work, and usually, these senses can help them explore the world more, rather than focusing on a narrow field of interest or reverting back into their own solitude. For a visual/tactile child who usually perseverates on videos, you can strengthen their kinesthetic senses by increasing their bodily movement. The movement will awaken nerves and synapses not frequently utilized, which forces the brain to become more aware. Additionally, since movement is not a sense they usually seek out independently, you will have to move them, which forces them to become aware of your presence in the environment and keeps them from withdrawing. Likewise, taking a child who is auditory/kinesthetic and having them work on a visual computer program (one with no audio output) like a type of puzzle can strengthen their visual senses. In the beginning, exploring these new senses will not be easy or fun. Experiencing a new sense at a higher level of intensity can be distressing given that you are pulling your child out of their comfort zone. Or, the child may not find it as satisfying as their typical activities, so there may be limited motivation to continue the task. Begin these sensory exercises slowly and for smaller time periods, and then increase the frequency and duration gradually.

These senses are tiny windows into your child, some are wide open, others are tightly shut, but when you can seep in through the open ones and pry loose the closed ones, you may interact with your child and reach them in ways you never knew possible.

Stimming it Out

We all use our senses to experience and explore the world around us. Some of us are lacking in some senses completely (sight or hearing), but make up for it with stronger senses elsewhere. Some of us have naturally stronger and weaker senses, for which we’re always finding ways to compensate. But every experience, every sound, sight, touch, smell feeds information into our brains, our sensory input, which stimulates the axons and synapses, releasing chemicals into the maze of tissue and engaging various structures for various purposes. For autistic children, the ways they experience the world is vastly different, and sometimes what could be a simply pleasurable experience for us becomes a drug for them.

There are two causes of stimming: environmentally inflicted stimming and self-induced stimming. Environmentally inflicted stimming is uncontrollable stimulation, such as being placed in a busy store with lots of people and loud noises and movement. Such overwhelming input for children who have a tendency to be selectively hypersensitive is an assault on the senses, synapses flash like a firework show, chemicals flood the brain, and involuntary muscular movement (flapping, twitching, pacing) ensues.

Self-induced stimming is probably more common, as it’s seen in the typical environments your autistic child finds themselves in everyday. As previously mentioned, one aspect of autism is an element of ADHD. One theory I’ve come to realize, whether or not it’s been explored I do not know, is that the behaviors associated with ADHD is not that of an over-stimulated mind like many believe, but an under-stimulated one, where the activities of the day as they’re communicated by the five senses are not enough, synapses are not firing as they should, and the brain seeks more and more stimulation. For a neurotypical child with ADHD, this becomes looking at and touching everything, constantly moving and talking, and darting about the room in an effort to flood the senses and satisfy the brain’s craving for sensory input. Hence the effectiveness of the stimulant Ritalin, which, contrary to belief of its paradoxical nature, does as it's meant to, jumpstarts the mind, bringing the brain up to the normal functional level and the everyday stimulation we all receive becomes enough for them.

For autistic children, they operate much in the same way a neurotypical child does, but when they seek stimulation, it usually becomes overwhelming for them, which results in the reflexive muscular movements mentioned above. This type of stimulation is called excitatory stimulation*. And like a bug zapper, our children are drawn to the alluring but harmful light of whatever satiates their needs. When these children find something that satisfies their sensors and sets synapses firing, I believe there is a neurological reaction to that stimulation, a flooding of chemicals that overwhelm the brain and creates not only involuntary movement, but a natural drug-induced high for the kids. Much like an adrenaline junkie who continues daring tricks and feats to feel the rush of the chemical surge through his skull, these children enjoy and thrive on the rush they get from sensory input. They become dependent on the neurochemicals; this is typically why many children obsessively rush to TVs, music, items with particular colors, sounds, scents, movement, or textures (their choice of stimulation depends on their dominant senses, which will be discussed in more detail in the next blog). This is also why pulling their desired object away from them usually results in a meltdown. Like taking away a drug addict’s supply, they can hardly bear the separation.

Additionally, like a drug addict, this stimulation seeking can be harmful to our children. The constant tensing of the muscles during movement undoubtedly causes physical discomfort for them (go ahead, try tensing your entire body’s muscles and flapping your hands over and over, after awhile it doesn’t feel so great). For some autistic children who are unfortunately given to epileptic seizures, sometimes the stimulation they seek out triggers those seizures. But, no matter how much their bodies may ache or the seizures may hurt them, they will continue to seek out their vices undeterred for that moment of bliss.

Another example would be that of a rat in a neuro-behavioral study. The rat had an electrode implanted into his brain, in a very particular section called the Nucleus Accumbens (NAcc), the structure of the brain responsible for pleasure. When stimulated, the NAcc releases an opium into the brain, giving us that warm fuzzy feeling following an intimate moment or that first spoonful of your favorite Ben and Jerry’s. The rat was then given two levers, one connected to the electrode, and one connected to a food dispenser. He was given the option to select whichever he desired. The rat initially began with the food lever, but once he discovered that the second lever stimulated his NAcc, the food became a faint memory. Becoming what could be determined an opium junkie, the rat neglected the food lever in favor of the electrode lever to the point where, without researcher intervention, the rat nearly starved himself to death.

One other important note that should be made is that these items also hinder your child’s growth and desire to reach outside of their solitude to engage the world around them, and consequently, you. When they become enthralled with the TV or the iPad, when they sit for hours with a musical toy, fascinated by the blinking lights, or even something as simple as a collection of crayons, they are permitted to retreat to that fantasy world where everything else fades to darkness, they’re left with a bright toy, and they don’t need anyone else. A recent article remarked how these items, specifically the iPad, are becoming “useful tools” (aka babysitters) for the parents of autistic children. Parents who could never take a moment for themselves sat their overactive child down with an electronic tablet and found the free time to complete chores, talk with other members of the family, and returned hours later to find the child still seated, playing. Obviously we have all been guilty of this, placing our children in front of the TV so we can fold the laundry or wash the dishes, and it bears mentioning that tablets have applications for autism that can help your child communicate, learn letters, animals, shapes, colors, and help them with fine motor skills, so leaving them with the toy doesn’t seem so bad. But for hours? Remember something as bright and involved as an iPad program is giving them a neurological fix, no matter how quiet your child is (this is called calming stimulation*). Limit its use, and when the dishes are done, sit with them and work on the iPad together, make a social activity of it. Otherwise chuck it and the isolation that inevitably comes with it.

Evolving from our hedonistic hippie era, the phrase “if it feels good, do it” hardly seems appropriate anymore, but we all have our vices: smoking, food, irresponsible sex, etc. that we know we shouldn’t indulge in, knowing the potential harm of such. As parents, you have the responsibility to protect your child from that as well, and given the harmful effects of some stimulatory objects, you need to be able to identify these items and remove them from the environment. Sometimes becoming over-stimulated isn’t always exhibited by the usual physical movements; as has been repeated multiple times in this blog, no autistic child is the same. Some over-stimulation (both excitatory and calming) can be shown through fits of giggling, rapid breathing or a few heavy pants, fluttering of the eyelids or rolling upwards of the eyes, or intense focus on a particular object or activity. Learn to recognize your child’s stims and the objects or activities that cause them and remove them. As noted above, calming stims are not as dangerous as excitatory, they don’t result in stereotypical movements or seizures, and parents can tend to the demands of their homes and families. But again, always in moderation and try to engage with your child in these activities to not only encourage social interaction but to also allow the parent to take an active role in their child's interests as well, whether it's a favorite game or a few simple strings.

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*Excitatory Stimulation: Over-stimulation of the brain that results in involuntary muscular movements such as hand flapping, twitching, and pacing

*Calming Stimulation: Over-stimulation of the brain that results in what appears to be calm activity, intense focus and engagement in an object or activity

The Futile Fight

Though I had anticipated a specific progressive order of blog topics, I couldn’t ignore this story when it found its way into my email box. A tragedy north of the border that, while heartbreaking and appalling, is a story about a fight many parents know too well, a fight where this parent finally threw in the towel.

Jeffrey Bostick was a hard working father who loved his family and his 11 year old autistic son, Jeremy. Living in Ontario before moving to Alberta, Canada, Jeffrey struggled and sacrificed to be able to find and pay for the services his son so desperately needed. Jeremy had instances of violent outbursts. When services were available, often times providers refused to stay and terminated treatment, believing his behavioral issues were too severe and leaving the family with few other options. Other times costs became so overwhelming they had to intermittently stop treatment, which is detrimental in its own right for a disorder that relies heavily on consistency. At one point, Jeremy was placed in a group home where he was making notable improvements; a small facility where Jeremy was tended to by two employees, he stayed on the weekdays and was allowed to return home on the weekends. But at $32,000 a month, Jeremy’s stay was short-lived, and the family removed him from the home and looked to the government for aid. Unfortunately, like most programs in the U.S., there were limited facilities, limited personnel, limited funds, and exceptionally long waiting lists to receive assistance in Canada, if you made it so far as to qualify for assistance at all. Finding themselves $90,000 in debt for Jeremy’s care, the Bostick family was given one last option for their son.

The family was told that Jeremy would have to be transferred to a full time lockdown facility. Deena, Jeremy’s mom said this was the point where Jeffrey snapped. After fighting for their son for nearly a decade, making no leeway, and falling through the cracks of the system time and time again, their son was now being ripped from his family, placed in a group home the family did not get to choose and did not even approve of, and left alone, surrounded by strangers. Jeffrey had had enough. He took his son home, locked himself and Jeremy in the basement, sealed off the doors with duct tape and stuffed linens in the vents. Then he opened a container of carbon monoxide and he and his son died together, side by side.

One thing I quickly learned when I began working at my internship was how difficult it was for parents to receive the resources and the assistance to care for their children. Nearly every hour of ABA therapy was fought for tooth and nail, and most times awarded following tireless IEP meetings, due process proceedings, emails and calls between lawyers, and lawsuits. It was a typical sight to see my clinical supervisor perched at her computer researching, emailing, calling, scheduling meetings to fight for coverage. Our kids were almost always denied by their insurance companies and school districts, but concerned for disruption of services, she allowed patients to continue treatment while appeals and decisions were processed. This often meant months of services continuing without funding. A few months after I started, I remember my supervisor venting about an insurance company who denied a patient, arguing he was not autistic. The patient had been independently assessed by a psychologist, a school psychologist, a neurologist, a therapist, and a medical doctor, all of whom agreed unanimously that the patient fell on the AS. A short time before I left the clinic, approximately 9 months later, he was still being denied on the same grounds, but services remained uninterrupted, a costly practice for the clinic, but the right choice, nonetheless. Sometimes bills amounted up to tens of thousands of dollars until we were finally paid, only to be rejected on the next statement, and the fight began again. But most clinics are not like this one. Without funding, providers and vendors shrug off the patients and bid them to return when they find the money, again, leaving the kids helpless.

School districts were no better, and for those unaware, yes, your school districts are obligated to provide services for special needs children under the IDEA, Individuals with Disabilities Education Act, but don’t think a simple law motivates them. Most school districts felt they were more than capable of providing these services to the children, and usually sought out cheaper facilities with under-qualified providers, usually young adults with high school diplomas, some in college, a few places required Bachelor’s Degrees, but such low standards undoubtedly resulted in providers leaving the Bosticks after a few episodes of violence. Inexperienced and unprepared, most people who don’t know what to expect typically run for the door. Treating autism isn’t for everyone, it takes someone with heart and determination. (It should be noted our facility required all providers to at least be enrolled in a Master’s Degree psychology program, about 90% had already obtained their degrees, and bites, scratches, hair-pulling, punches, kicks, and even slamming a clinician to the floor didn’t stop us from working or caring.)

When parents realized the services they were getting were substandard to say the least, they sought out our clinic and funding from the districts. Sometimes parents insisted on placing their children in our school as well after finding their children’s educational needs were not being met in their public district’s special education classes. Nearly each district fought. For parents fighting for our school almost all of them went to due process; for external services such as ABA, Speech, and Occupational Therapy, some meetings took two or three sessions. One IEP I took part in took nine hours over two meetings before the district finally agreed to meet the parents’ requests. That evening, amidst the celebration, my supervisor suddenly interjected “Now we go to fight for this guy”. After a nine hour battle and two months of nerve-shattering preparation that preceded it, I retorted that we should’ve been able to enjoy the small moment of our success. Apologizing, she remarked “we always think what’s next? I got 50 kids to fight for”. And truly, the fight was never over.

As time went on the process became ridiculous, we became circus monkeys, jumping through hoops, singing and dancing to appease our funding sources and continue services for our kids. It wasn’t enough that they were improving, they needed to improve more, or improve faster, and then if they were improving too much or too quickly, the ring leaders then argued that they had made enough progress and didn’t require as many hours of therapy, or should stop therapy altogether. Sometimes they just changed the rules on a whim, to complicate things, or to simply entertain themselves as we scurried to meet their demands. One patient had been receiving speech services through his school district for well over a year, and then began OT services when he began attending our school. Approximately a year and half after beginning speech and five months after starting OT, the school district suddenly determined that our speech and OT specialists were not qualified to provide services because they were COTAs, assistants to supervising licensed specialists. We scrambled to readjust schedules and sessions to accommodate the request for him to meet with strictly licensed providers.

The stress we go through fighting for these kids is immense and overwhelming. In my experience with the IEP, my anxiety was practically debilitating as we went through two months of testing and assessments, every moment knowing that a bad day could jeopardize a test score or a poorly interpreted observation could result in having this child ripped from us. And this was just a snapshot in time, two months out of our lives, when in fact, her parents had been fighting this battle for years, much like every parent had been fighting before coming to us. Most never even knew what they could do, given the limited resources provided to them. My supervisor had been there herself, fighting tirelessly for her autistic son before giving up on the districts and forming her own clinic. I could never fully comprehend the stress, the pain, the anxiety and depression that comes with knowing your child deserves more, should get more, and is suffering through no fault of their own because money-hungry agencies and private insurance companies refuse to do the right thing.

Now, in many states across the US, insurance companies are becoming required to cover ABA services, and the bills have widened the expanse of who can provide these services (MFT interns like yours truly, for one), and many have been beguiled into believing this was the answer to their troubles. While it can certainly make things easier, don't be fooled by the bells and whistles. We are, after all, talking about private health insurance, which, if you've seen Michael Moore's Sicko, you know this is still a dark fight. I imagine most arguments now will fall into step with the previously mentioned patient, fights over whether one has autism no matter who agrees.

While nothing can even begin to excuse the path Jeffrey Bostick took, it can almost be understandable. As a parent, there is no worse feeling than the utter helplessness of seeing your child in pain every day, and there is no darker moment than knowing that no matter how hard you try, you can’t help them, and no one else will either. While tragic and horrific, through the looking glass of crazed desperation, Jeffrey’s act was one of pure love, to save his child from suffering and an apathetic world. Thanks to the people I met at the clinic, I know for a handful of these families, they are getting the help they need. Sadly, it’s a small drop in the perilous ocean of autism.

Autism's Solitude

Though Autism is predominantly characterized as a social disorder in the DSM, it’s really a mosaic of disorders that we find in childhood development, from communication disorders, anxiety, Attention Deficit Hyperactivity Disorder, Oppositional Defiance Disorder, Motor Skills Disorder, Stereotypic Movement Disorder, and Mental Retardation. With such a cornucopia of disorders thrown into the mix and psychologists and doctors alike flipping madly through the pages of the DSM to find an answer, it’s no wonder so many autistic kids are misdiagnosed and so many other children are misdiagnosed as autistic.

Communicative Impairments
There can be no denial that there are impairments in autism that prevent these children from effectively relaying their wants and needs to the world. Some are nonverbal; some are verbal with speech difficulties. Children cannot officially be diagnosed as autistic unless they had an absence of or a significant delay in speech development. If there was no speech delay present but other symptoms appear, they may qualify as having Aspergers.

Those who are nonverbal have, in one way or another found a way to communicate, either by pointing, grabbing your hand and gesturing, or vocalizing (whining, grunting, crying). As a parent, most know what a tiny nudge on the side or a pinch to the forearm means, like a mother or father who recognizes their new baby’s cries as distinctly different for hunger, wetness, fear, or pain. Given that you know what your child needs and wants, most parents find this sufficient for functioning, however how long would these gestures suffice in an outside environment, placed in a new classroom, with new friends, or new caregivers who haven’t spent several years with the child and haven’t the benefit of parent intuition?

Children who are verbal, however, are not necessarily more successful in communicating their desires than nonverbal. As mentioned in the previous blog, scripting is a frequent verbalization with these children. With limited vocabularies and a very limited ability to independently construct the words they do have into sentences, many children draw off of pre-made conversation; dialog from television and movies, songs, words from everyday exchanges they overhear, etc. One child I worked with would typically use scripts to answer various questions. For example, I could ask “Where do you want to go?” and he would respond “I need your help to find the park, can you see it?” in typical Dora the Explorer or Mickey Mouse Clubhouse fashion. “You want to go to the park?” I would ask. “Yes, let’s go! We can do it!” Another particularly bright patient would accurately pair the tone and words of the scripts to present her emotions: when happy, her scripts were songs and games. When upset, she scripted dialog from shows where the characters were distressed, yelling “We have to get out of here! Incoming! Ahhh!” However, for most autistic children, when reciting these lines, they are not often directed towards anyone in particular. As mentioned, these repetitions are usually to entertain themselves (perseveration) or to manage anxiety (obsessive-compulsion).

There are several techniques and technologies being used today to help autistic children communicate, whether verbal or nonverbal, from more simplistic tactics such as PECS, Icon boards, and letter boards to higher end technologies such as iPads and Go-Talks. Again, the pros and cons of these approaches will be discussed in detail in a later blog.

Stereotyped Behaviors and Interests
Most people recognize the most typical autistic behaviors, such as hand or arm flapping, pacing, twirling their fingers in front of their eyes, etc. These are behaviors autistic individuals can engage in for hours at a time if they’re permitted to, and while seemingly pointless to the outsider, these movements are meeting a need for these children. Most times, that need is “stimming”, short for stimulation. We all require stimulation of the various senses, and there are five for autistic children that are slightly different from the common ones we know: Auditory (hearing), Visual (sight), Tactile (touch), a combination of Olfactory and Gustation (smell and taste), and Kinesthetic (movement). Given that the autistic mind mirrors much of the ADHD mind, autistic individuals usually struggle with an overactive brain in an underwhelming environment, therefore they seek stimulation in various ways to appease their senses. What movements and activities satisfy which senses, how to determine your child’s dominant senses, and how to stop some stims and utilize others to help your child interact, grow, and learn academically will also be discussed in an upcoming blog.

Other children with Autism and Aspergers usually engage in obsessive and very select interests or topics. Some become obsessed with objects such as trucks or blocks. Others are obsessed with topics such as very specific events in history or how planes operate. These obsessions usually consume the individual’s daily life; they rarely can discuss other topics without somehow integrating their preference or completely redirecting the conversation back to their obsession. Like security blankets, most cannot function without frequent contact with the tangible object of their obsession, or the continuing thought of it. Obviously, with limited ability to discuss other topics or acknowledge the interests of others, this presents a considerably large obstacle with developing sustainable relationships. One patient I frequently spoke to had a particular obsession with middle eastern countries. Nearly every time he approached me, I could anticipate a question about Iraq or Afghanistan. At one point, I made the mistake of divulging that I had a friend from Palestine, and for the next two weeks, our conversations always began with “Does your friend in Palestine…”. We then we took a three week break for summer, and once he returned, the questions resumed, uninterrupted. Though at times I could redirect the conversation to his daily life, it never carried over to the next conversation we would inevitably have regarding the flag of Iran. It is very difficult to break these obsessive tendencies, typically through systematically reduced contact and discussion of these obsessions, but usually once one obsession is exhausted or is no longer made available, a new one is formed, and the cycle begins again.

Developmental Delays
Most parents don’t need to wait until their child is three to know there is something different about them. Developmental delays usually consist of delay in emotional expression (smiles, laughter), social development (eye contact), emotional contact such as a desire to be touched or a desire to be with one’s mother in the mother’s absence, delays in motor skill movement such as grabbing objects, picking things up, crawling and walking, and cognitive delays reflected by speech and academic abilities such as simple counting and recognizing basic colors and shapes.

As mentioned before, the symptoms of autism affect each child differently, some symptoms are more prevalent than others, some are not present at all. And if we’re not careful in not only diagnosing as professionals, but accepting diagnoses as parents, we may just end up like Jenny McCarthy, spending years treating an illness our child never had.

Unwrapping the Enigma

If you Google the word autism, you’ll find a wide array of websites, blogs, videos, and articles discussing what autism is. Nearly all of them will churn out industrialized one-size-fits-all definitions of what this disorder entails, lists of symptomology, poorly explored causes, various treatments, some effective, some not, and hundreds of support groups.

There are several ways to describe this disorder, through medical and biological terminology and approaches (both of which I’m admittedly still learning about and do not feel capable of discussing at this time), and through observable behaviors. But even observable behaviors are inconsistent from child to child and to pigeon-hole them into one intricate schema is like trying to hammer a belligerent puzzle piece into an ill-fitted space unable to contain such a complex shape.

The Diagnostic Statistical Manual Four TR (the psychology handbook of diagnoses) classifies the disorder as such:
-Social Impairment including deficits in non-verbal communication (eye contact, facial expression, body posture, and prosody); failure to develop peer relationships; lack of interest in social exchanges and activities; lack of emotional reciprocity

-Communicative Impairments including a speech delay or complete lack of speech not accompanied by other communication attempts such as gestures; in those who are verbal, the inability to conduct sustained conversation; stereotyped and/or repetitive speech; lack of imaginative play

-Stereotyped patterns of behaviors, interests, and/or activities such as obsessions with certain objects, subjects, or activities; rigidity to changes in the environment including changes to tangible items or routines; repetitive movement such as hand flapping, pacing, or complex body movements; occupation with small parts of objects

-Developmental delays such as verbal and motor skill deficiencies

This list has evolved from a very basic dichotomy in the 1950s, created by Dr. Leo Kanner and Dr. Leon Einsenburg, classifying autism on two main points: 1) A profound lack of affective contact, and 2) a repetitive ritualistic behavior which must be of an elaborate kind (1956). Throughout the years as various characteristics were observed in the general autistic population, more and more symptoms were added to assist in the diagnostics of the disorder, introducing the criteria presented by the American Psychiatric Association in the DSM above. While this list is frequently regurgitated onto the net in various forms and phrases, it paints a very cut and dry image of what autism should look like. But, as any parent in the autism community knows, your child is not like any other autistic child, the way autism affects each child is different and they are as unique as a thumb print. And as autism spreads throughout the population (in the 1950s, 1 in 10,000 were affected by it, today the ratio is 1 in 110), we are recognizing that even these requirements are not fully accurate in describing our children.

Social Impairments
One important note discussed in Dr. Michael Goldberg’s book, The Myth of Autism, is the fact that few if any autistic children nowadays meet the criteria of profound lack of affective contact, and even with the newly developed criteria of the DSM, the general idea being projected is that autism creates an individual so disconnected from society emotionally and socially they’re devoid of all attributes that make them decidedly human. During my time with my kids (each child I’ve ever had the pleasure of working with has come under the slightly possessive and affectionate title of “My Kids”), I found this to be untrue. While there is no doubt a social deficit and limited motivation to connect with the people around them, to deem them completely incapable of doing so is unfair and inaccurate. In highlighted moments of the day, I saw these interactions taking place and connections being built, strictly on their terms as only they would have it, but connecting nonetheless.

I recall a few examples of such, one being of two of our patients playing in the ever-popular trampoline of our playroom. Jumping side by side in parallel play, neither acknowledged the other with eye contact, with verbal exchanges, physical exchanges, or expressions such as smiles or laughter. Standing outside of this bubble watching their blank faces, it would appear that neither one even knew the other was there. Then, without a word, one turned and left the trampoline and trotted over to the swings. The other didn’t say goodbye, didn’t even turn and watch her go, she didn’t even seem to realize her peer was gone. She continued to jump for a moment before suddenly bouncing to the entryway and hopping out of the trampoline, joining her peer on the swings. Again, no eye contact was made, no greeting uttered as she climbed into the suspended seat. The two stared straight ahead of themselves, faces blank, aside from the occasional smile and laughter only the joy of swaying through the air unbridled could bring. But, the two were together. Given that humans are the desperately social primates we are, it becomes evident that interactions we've deemed “socially acceptable” and expected of us in daily interpersonal exchanges are at times, erroneous. Sometimes we don’t need to talk, sometimes we don’t need to smile. Sometimes, just being near another living breathing soul is enough. While it is important to express ourselves to one another in this world, it would seem these children have found an alternate route. Whether or not this can be counted as tantamount to a severe disorder, my thoughts on this must be saved for another blog.

Another aspect of autism that has been widely circulated to the general population is the lack of emotional recognition and reciprocity, and the desire to avoid affection. While I have seen struggles in respect to this symptom, I wonder how entirely accurate it is as well. With many patients, we worked to help them understand and recognize emotions in others and themselves. This involved intricate work with labeling smiley faces and sad faces, reading the telltale signs of facial expressions and prosody, and ultimately graduating to recognizing the emotions on actual people’s faces, and then their own. Many of my kids succeeded, being able to label others and even review photos and videos of themselves happy or upset and properly label their emotions. However, when in the moment, if they were screaming or crying, they could not appropriately state whether they were happy, sad, or angry. In this sense, having an intimate connection and understanding with their own feelings is a prominent deficit of autism. But emotional reciprocity? Not so much, based on my own experiences.

In the many kids we treated at this facility, I rarely if ever came across a child who didn’t like being consistently touched. At times they would pull away, sometimes they had to initiate the contact, other times they had particular people who could touch them and others who couldn’t (as previously mentioned, always on their terms), but they loved being hugged, squeezed, tickled, and kissed.

When it came to spontaneous emotional recognition and reciprocity, it was rare but present. During a particularly difficult time at work, I was in my office with a patient, taking a break from work and just watching her. She was scripting* her usual libretto and I became emotional as I ruminated on stressful events. A few rogue tears crept out of my eyes, and though she was facing the wall, she froze; her scripting stopped. Turning my gaze to watch her I saw her peering out of the corner of her widened eye, watching me. She stared for a moment, and I asked for a hug. She leaned in and hugged me, then pulled back. Watching my face intently for a moment as a few more tears escaped, she leaned in again and kissed my cheek.

Another time, struggling yet again, I had excused myself from the clinic and walked to a distant grassy corner to recuperate. A frequent walking path for clinicians and their patients, one small group soon came sauntering up the sidewalk. Recognizing from a distance that I was crying, the clinician stopped her patient and bid her turn around to afford me some privacy. Though a good 40 feet away, I could see the patient refusing. A typical trait of an autistic child suddenly forced to change an expected routine, I assumed she was frustrated because she wanted to finish her walk. Soon, though, I heard her shouts over the fall breeze. “Can I kiss Jae?!” she yelled. I signaled permission to the clinician, and the child came running across the grass. She leaned over and kissed me, then willingly turned around to return to the clinic without tantrum.

Given these inconsistencies with the diagnostic criteria and observed behaviors, the question becomes does the DSM have to change to describe autism more accurately? Or do these children even qualify as autistic to begin with?

There are many more facets to autism symptomology that will be discussed in the next few blogs, all of which require more individualized attention and time. Future topics will also include Autistic behaviors, tried and true ABA therapy techniques, Autism and its alleged connection with mental retardation, how autism affects the family and the marriage and much more. Please return soon.
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*Scripting: The repetitive verbalizations of dialog heard from movies, television, music, or everyday conversations, sometimes used for entertainment, other times used for anxiety management.