Futility is the Principle

By Jagabandhu das

It was recently announced in the news about how an 18 year old autistic boy from Ohio/USA is being charged for murder after his university professor mother (who was apparently very dedicated to his care-giving) died from injuries received from her son during a violent outburst. What a terrible tragedy! I’m co-parent to a very strong severely autistic 18 year old daughter who can also become quite violent at times in a very nearly sub-human manner (like a wild animal or chimpanzee). We can see that she understands very little and we are therefore completely dedicated to helping her (after being completely disappointed by the best efforts of professional medicine). Depending on the severity of his impairment it’s quite possible that this autistic boy doesn’t even understand what he’s done and even wonders where his mother has “gone.” The article mentions the deceased mother. What about other family members or the father? Are they not involved? Possibly not. Because families of autistic children suffer from an eighty percent rate of divorce. They simply could not survive the intense strain of the siege that is autism.

Even more tragic, apparently there also exists a disproportionately high or inordinate rate of murder/suicides amongst despairing parents/care-givers of autistic persons and those in their charge who finally completely give up with exasperation and broken defeat after being largely disappointed by their insular/isolati on and the dearth of viable alternatives available to them=2 0in “getting help” for their kids from a conventional medical establishment that knows next to nothing about autism. And the false hope generated by so-called alternative therapies can be worse than no hope. Because of the eventual level of disappointment experienced when the brutality of reality inevitable asserts itself.

Conventional medicine would only drug our daughter senseless as a “treatment.” A highly regarded neurologist from our local university teaching hospital (largely subsidized by pharmaceutical research) wanted to put her on respirdol which has potentially fatal side effects of diabetes and a rare form of liver cancer. We were unable to risk her well-being, however well-intended. Having her drooling peacefully in the corner isn’t our objective either. Also there is an unhealthy symbiosis between the medical profession and the pharmaceutical conglameracy which makes it difficult to pursue even minimal usefulness in this regard. All the most well-regarded treatments manifest thus far—both conventional and alternative are understandably targeted for those less severely impaired. Which allows the appearance of some measure of success. Our child is extremely severe (no speech/probably doesn’t even understand language) and is far beyond any “mainstreaming” potentials. Yet our local university chapter of CARD (Center for Autism & Related Disorders) considered that we were doing such a good job in caring for our daughter that they put us on their inactive=2 0list. They also readily admitted that hardly anything is really20known about autism. Kind of like Alzheimer’s.

It’s generally accepted that most autistic persons have difficulty engaging in eye contact with others. Whether family members or those with whom they’re less familiar. Our daughter is remarkable in that she herself seeks affectionate eye contact and social interaction (even with strangers in public, which has turned into quite a little challenge).

We noticed the sound sensitivity our daughter experienced before we heard that this was another commonality amongst autistics. What we noticed is that certain notes like G minor can send her into a fit of spasms (like the Govindam prayers on the Radha-Krishna Temple album or the synthesizer wash at the beginning of Pink Floyd’s “Shine On You Crazy Diamond).

There is some suggestion that violent outbursts from the severely autistic is caused by seizures which in some cases may be true. In order to eliminate this possibility we recently underwent standardized seizure assessment protocol at our local university hospital. They found our daughter had none of the symptoms attributed to seizures. So far as seizures are concerned: we’ve noticed that what really sends her into fits of tantrum is very toddler-like. She simply didn’t get her way. The only problem being she’s completely ambulatory and 120 pounds of mostly muscle. How to we deal with her violent out bursts and hitting. With sheer intensity of being. Sam e as it ever was.

In the past couple of years it’s been widely known and reported in the American media how some parents of autistic children believe autism to be a result of standard childhood vaccinations performed on toddlers in America. A class action lawsuit was mounted on their behalf. Recently, the court ruled against it because there was no scientific evidence to substantiate such claims. In our case we had noticed aberrational behaviors and developmental delays prior to our daughter’s vaccinations. I don’t like pharmaceuticals either (I hate to even take Ibuprofen, but I sure am grateful for it when I need it) but understand their benefits in some cases. Haven’t vaccines also saved lives? I also don’t feel it appropriate to blame God, the government or anyone else for whatever inevitable hardships that I must face in this life while considering self-pity the most useless of human emotions. Although I do think government is a good idea. And I think someone really ought to do it.

Apologies. For possibly offending anyone by my own cynical comments about government and self-pity (which was directed towards myself based on personal experience). Please know that unlike many other parents, I actually fought the “labeling” (diagnosis) of my much sought after firstborn. Only to be eventually devastated and heartbroken by the inescapable reality of it. And widely disappointed by all treatments (whether conventional or otherwise). For a time we did have good health insurance (way=2 0back when I had a “good” job). It didn’t matter. Contrary t o popular multifarious chicaneries propagated by charlatans seeking personal profit from the misfortune of others: there really is no “cure” for autism. Eventually I had to become truly strong from within so I could finally persevere as a soul and really begin to help the child I loved. Which is what parenting is really all about to me.

We’ve actually had her on specially formulated B vitamins for some time. It’s helps a little. We also tried the gluten-free, casein-free diet for years and it also only helped a little. Autism is known as spectrum disorder and so severity of affliction is manifest in a broad range amongst all those who suffer from it. The B vitamin therapy and dietary restrictions seem to work better with those who are less severely afflicted. Our daughter is at the most severe end of the spectrum with little hope of treatment by either conventional or alternative treatments.

So we’re sort of on our own. All we can do is become stronger (and deeper) from within. By God’s Grace. And become evermore compassionate to her suffering until finally the self-indulgent false egotistical conception of our own “suffering” become completely obliterated by our real concern for the suffering of others.

It’s ironic how the severe difficulties which we must face in this life often get worse over time. Not dissimilar to a degenerative neurological disord er like Alzheimer’s. And bad can always get worse. Much worse. Until fairly recently, if someone wondered about our autistic daughter’s degree of impairment: the ability to dress herself was a sort of conversational salient point which always resulted in an affirmative answer. Now it’s as if she’s lost that skill along with a host of other life skills which she has executed freely of her volition for years on end. As if her hard drive (or self-will) were damaged somehow (on top of being autistic) so that she has become confused like a stroke victim and reduced to shuffling rather than walking with little or no ability to do anything for herself. Unless specifically emphatically instructed to specifically do so. When giving her food or a drink she has to be told also to eat and drink. Each bite. Each gulp. Or to sit down (or stand up). Or walk (each step). Just another day in paradise.

I mentioned that she has no speech skills (although she often controls her inward/outward breath to gasp the Holy Name of Hari for long periods throughout each day). But as many autistic people she also suffers from echolalia (the vocalized copying of sounds heard). In her case she seems to have learned quite well how to bark like our neighbor’s large dog. And she likes to bark loudly without compunction in all places. And hoot in high-pitched way like the owls in our forest. Whether at home, in the car or the supermarket. Needless to say she spends a lot more time at home than ever befo re. Becoming frustrated if we don’t constantly give her assertive=2 0commands for each minute aspect of each daily function. If we don’t tell her to sit down she’ll remain standing in the exact same spot like a zombie until her frustration builds to a violent outburst. It’s as if she suddenly forgot everything of what little she previously knew. And instead of being less dependent on us for basic needs, she’s more dependent than ever before except when she was a baby. Which is what she is in spite of being 18 years old.

Yet by seeing her as spirit soul and carefully listening to her struggle to chant the Holy Name in spite her severe impairment I have been caused to hear creatures in Nature like crows chant Ram and Krishna. As if their speech was impaired by a cleft palate. We had a cat that lived with us for 18 years who also constantly chanted Ram. Instead of meowing. And many birds in the woods surrounding our house chant Hari. Whereas the tree frogs chant Hari, Hari! As if the Holy Name was everywhere if I only had the eyes to see It. Or the ears to hear It.

I can still remember the time we drove down from Concord, California to a program at Pusta Krishna dasa’s home in Capitola near Santa Cruz (about a ninety minute drive) in early 1993. It was a rainy winter day. And the highpoint was when Pusta Krishna Prabhu asked me to lead the singing of Guru-puja to Srila Prabhupada. It was a great honor that I will always cherish.

Our daughter was only around two years old and20hadn’t yet received her diagnosis of autism. Something at the program somehow set her off and she cried inconsolably for hours until we finally left with her sobbing in my arms. As we loaded ourselves into our ancient Peugeot station wagon and drove off into the evening’s stormy weather our daughter continued to cry inconsolably as the rain pounded down out of the black sky. About half way through our rough ride home with nerves ruined by having to listen to hours of crying, I began to meditate on the matra sparshas tu kaunteya verse from Srimad Bhagavad-gita about learning to endure the nonpermanent happiness and distress of this world. I started to sing this verse in my mind over and over again like an acappella (unacompanied) kirtan. Within a few minutes my mind was pacified. Then the crying finally stopped.

This sloka along with the Bhagavatam sloka …tat te nukumpam… (this adversity is actually my real inner necessity come to reform me) have been of immeasurable solace ever since as throughout each endless day’s journey into night we are forced to endure unimaginable/unmentionable new adversities in our ongoing struggle with autism. Even our best efforts to help our daughter Gita are often unsuccessful. Nonetheless, without attachment to fruition, we continue to do all we can to help her in the midst of her affliction, forever bound by affection—surrendered to the inevitable futility of the ephemer al realm. And no longer believing in the myth of control as all=2 0rush headlong to an inescapable foregone conclusion in this land of death and exploitation.

A close friend recently remarked about how we had “sacrificed” both our material and spiritual lives for our daughter’s sake. This is not our own perception of our predicament. Without spirit, there can be no life. Therefore, all of life must be considered spiritual. And selfless sacrifice for the benefit of others can truly open the heart to the wonders of compassion very nearly unlike anything else can. At least that’s what Lord Buddha thought. And taught.

There’s something inside of “me” that’s more than “I.” There’s something inside of “you” that’s more than “thee.” There’s something inside of “us” that’s more than “we.” If we can bring this inherent goodness within us all out to help the world we live in—what a wonderful vision to behold that would be. If we really care about the suffering jivas in the world, will any less suffice? For any of “us?”

Kindest regards to all the parents of autistic people out there. God bless you all! Please continue to hang on tight with all your love. My daughter is actually my teacher who has taught me many things about unconditional affection, fundamental compassion and inner strength which I might not have learned otherwise. I’m sorry I’m such a poor learner. And for “preachin” to the choir.

And to the rest of our mu ch esteemed international audience —all the best to you and yours!