Current Patient Profiles
Alec Wilschek - Autism
Life is all about the relationships. The ones we nurture, the ones we let get away, and the ones we want to explore, but can’t figure out how. In the end, most of us define our lives by the connections we have made with others. Nothing has reminded me more of this than Autism.
I would like to tell you about my youngest son, Alec. We
call him AJ – named after his paternal grandfather who passed
away during my pregnancy. He is now 4 years old and was
diagnosed with Autism at the age of 2. If I could describe
AJ in one word, it would be “enchanting”. He
loves the water, to be tickled, and to listen to music. Every
morning when I enter his room at the start of the day, he smiles
at me. He laughs at the dog, loves letters and numbers,
and has a special bond with his maternal grandparents. Most notably,
he has the most soulful, biggest green eyes I have ever seen. And
on those occasions when he locks his eyes onto mine, he and I are
totally connected and I know he is with us. If you could spend
time with AJ you would soon discover that he is nonverbal. He
communicates by “pulling” me around the house to the
things that he wants. He drinks only from a sippy cup and will
only eat crunchy or pureed food. His diet consists of 8
food items. He will not sit in a chair for longer than 2-3
minutes before getting up to run or jump. He rarely seeks
the engagement of others for play or pleasure. He prefers
to play with things instead of people. He has learned to
tolerate the presence of his older brother, but does not seek him
out to play. He cannot kick a ball, swing a baseball bat, ride
a tricycle, scribble with crayons, feed himself with utensils,
or pick out his clothes for the day.
The DSM defines autism by communication and sensory integration criteria. I now understand that the “lack of communication” is really a symptom of the inability to process one’s environment to the point whereby one can reach the level of functioning required to have interpersonal relationships. Communication is the function of the ability to process stimuli, and the desire and motivation to interact with others. It’s all about the ability to value “people” relationships and the positive reinforcement most of us receive as we engage in human interactions. Every day I am saddened by the many challenges AJ will face throughout his life. In the end, if someone asked me what keeps me awake at night, I would say that it’s not whether he can ride a bike, or write, or go to college. What troubles me the most is much more fundamental. It is the fear that he may not ever make another human connection in his life. And that after I am gone, no one will be there to appreciate his laugh or see the way his face crinkles up when he smiles. The desire to have someone value your child just for who he is – this is foremost for every parent. I know that all of us with children on the spectrum want this for their child – me, Jenny McCarthy, and the family right down the street from you. This is why I am reaching out to all of you who are reading this.
Now, let’s go back to relationships for a minute. The etiology for 90% of autism remains unexplained. Yet, the leading researchers all agree that the pathophysiology is largely genetic, with an auto-immune trigger. Every time a new genetic link is found, families like mine, consent to more genetic testing, only to be left once again without answers. Although important from a public health perspective, this “genetic” hypothesis does little to help parents. In fact, it just fuels the self-blame they are already struggling with. For those with an autistic child, everyone in the family blames themselves. They dissect the personality of each person in their family tree for some kind of “clue” or “reason” that links back to the affected child. The divorce rate for autistic parents is well over 80% - this is unchanged for first or second marriages. I have come to understand that it is not the stress, chaotic therapy schedules, or financial drain that brings relationships to an end. It is the guilt and self-blame. Often, people can forgive others much more readily than they can forgive themselves. It is not that one parent cannot forgive the other, but the parent cannot forgive them self. It is these feelings of blame, guilt, sadness, & disappointment, which eat away at one’s confidence and self-actualization that initially enabled that person to participate in a selfless, healthy relationship. Divorce is always difficult for children. But, imagine the consequences for children on the spectrum who thrive on “routine” and need constant social cueing and engagement by those who are close to them so that they can learn to value interpersonal interaction.
1 in 94 boys are diagnosed with Autism. I believe this is the health crisis of our generation. Most of you reading this probably know a family with a child who is on the spectrum. I ask you to remember that the entire family struggles on a daily basis, on many levels. The best thing you can do for them is to “befriend” their child. If you have children, encourage them to be a “buddy” to the child with autism. Sit next to him on the bus; invite him to your child’s birthday parties, holiday events, etc. The sad reality is that the boy with autism will spend most of his time alone if left to his own will – not always by choice, because he just can’t make the leaps the rest of us do to initiate human interactions. Remember that small acts of kindness mean the world to families who are struggling. Community and science are both needed to heal autism.
In the state of IL, there is no law that mandates private insurance companies to cover treatments for autism. Treatments are considered either developmental or experimental. Medical insurance is designed for “medical” diagnoses, not developmental issues. Even mainstream therapy, such as speech therapy, occupational therapy, and physical therapy is poorly or not covered. Families like mine are paying in excess of $80,000 a year in out of pocket medical expense. And, this only touches the so-called “mainstream” treatments.
Newer therapies such as hyperbaric oxygen therapy, stem cell infusions, and RDI therapy have shown great promise for many children on the spectrum. For my friends and colleagues who work in the healthcare arena, there is evidence based research to support HBOT, as well as the premise behind stem cell infusions. This is not “science fiction” anymore (Rossignol, DA, Medical Hypothesis 68 (6): 1208-27; 2007). Both of these treatments are grounded in the theory of neurological cell damage and the inability to process oxygen and nutrients needed for proper neuron function. HBOT requires the purchase of a hyperbaric chamber – at $16-20K. Stem cell infusions are only available abroad – this procedure is not FDA approved in the United States. I want to be clear that I am not referring to controversial embryonic stem cells. Medical facilities in Cancun, Cost Rica, & China offer non-controversial cord blood stem cell infusions for children on the spectrum. It is disappointing that all of these organizations operate from a business model and not a research model. Therefore, published data is rare, but does exist (Ichim, T., et al, Journ of Trans Medicine Vol 5, p.30, (2007). Many families have participated in this treatment and their stories are consistent and very reassuring. The US medical community is currently amazed with the results of cell stem infusions for children with Cerebral Palsy (CP). The leap from CP to autism, regarding this application, makes perfect sense as both conditions are founded in neurological dysfunction. However, there are currently no stem cell research studies in the USA for autism and participation in offshore programs require tens of thousands of dollars.
I thank you for your time and energy in reading this. Your support, friendship, prayers, and good wishes are so appreciated. If you can, give a financial donation to support autism research or to individual families, like mine, who are committed to building a meaningful future for those on the spectrum. Additionally, support stem cell advances & pending legislation that mandates private payer reimbursement for autistic treatments. If you live in the Chicago-land area, stay tuned for information about our fabulous fund raising event in November 2008.
The warmest regards,
Kim Wilschek
St. Charles, IL
Nurse, hospital administrator, educator, and mother of Joey and AJ.
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