In recent years the diagnosis of autism has skyrocketed. Children range from mildly effected with some stimming, sensory over load and issues in the area of speech and communication. This level earned the name pervasive developmental disorder, kind of a mild touch of autism if you will. There is a middle ground, and then there is what the rest of us know as autism, a monster within the body so great our children are in big trouble. Alex Spourdalakis was such a child, and now he is dead, possibly killed by his mother. Sky Walker was such a child and he accidentally killed his mother. What do these two young men have in common? Failure for the medical community to make a proper diagnosis and get this boys the help they really needed.
Who was Alex Spourdalakis? I became aware of his plight via the facebook community and the autism groups I am a part of. The Thinking Moms’ Revolution, Autism Media Channel, The Age of Autism all took on the story of Alex last winter. Mom’s like me brainstormed how to help, talked to anyone who would listen or might have a connection to help, we prayed for Alex and his Mom.
Alex was a young man with extreme autism, at the age of 14 he was full grown, strong, and violent. He was the apple of his Mother’s eye and she had given up everything to try and get Alex help. When you are an adult sized child who is capable of breaking your care givers arm during a fit of rage, you are no longer cute. You are no longer the poster child for autism is just a unique way of being, you are in the eyes of the medical community a psychotic threat that needs to be drugged and housed away from society.
What started as a routine cry for help, ended in a world wide fight for Alex’s human rights. Dorothy Spourdalakis took her son to a local hospital for help after a week of stomach issues that was causing Alex great discomfort. Alex spend two weeks tied to an ER cot before being transferred to Loyola University Hospital. His mothers request, help with his bowel pain. Rather than listening to Mom about his pain, sedating and scoping him to find the cause of his severe intestinal issues, Alex was stripped naked, overdosed with psychiatric medication, tied to the bed and left to be mistreated by the medical staff who only saw Alex as a psyc ward patient. As Dorothy fought to help her son, she was removed from his room, security guards were placed near by, no visitors were allowed in, no telephone was allow in the room even the staff had been instructed not to wear name badges so Dorthy could not learn their names. Dorothy begged to have him transferred to another hospital for the correct help, but as Alex lay tied to his bed, covered only with a sheet, her cried fell on deaf ears, until the autism community heard and responded.
Mothers who would, could and do relate to extreme autism took up the call for help. With the ever looming threat of CPS hanging over Dorthy, they went to work calling on the media, and asking for their voices to be heard. WGN of Chicago was contacted repeatedly by autism groups and individuals nation wide. Chicago native Lisa Joyce Goes contributing editor of Age of Autism, head of public relations for The Thinking Moms’ Revolution, and board member of the Canary Party, managed to be allowed into visit the family. Slowly pressure allowed others in, and in the middle of the night, Andrew Wakefield flew to be at the hospital to plea for proper medical help to allow Alex’s gut to heal, this to end much of his outrage.
I felt helpless down in Mississippi and extremely blessed for this very well could have been John, it had been John at one point in time. I prayed and cried and kept up to speed on the situation. I sighed a huge relief when friend and fellow Unlocking Autism Mom Shannon Johnson posted an update that Alex was being moved March 24, to an unknown location to get the help and services he needed. I smiled thinking that one day Dorothy would be a guest speaker and Autism One and we would hear glowing reports on how Alex was now doing. The end.
Then Sunday June 9, 2013 Alex died, his Mother and God Mother were found in the room with Alex where they lived in a tiny apartment above a plumbing supply store. The women were unresponsive and were later reported to be drugged. Both lived. One has awakened well enough to make a statement. As of this writing we do not know the personal details of those last hours that lead to this tragic end. What we do know, is that this did not just suddenly happen, it had been building for years. It escalated as Alex grew into a man’s body. Now it really is the end, or is it just the tip of the iceberg?
There are thousands of Alex Spourdalakis out there. Some are three year olds, others are reaching that preteen age while others are teenagers or older. The problem here is that our modern medical system that is partly to blame for creating this mess, is not helping fix it either. We take a normal child and without asking one health questions about their family history, possible vaccine reactions and we shoot them full of virals, toxins, foreign human and animal DNA, and expect nothing to go wrong. Some of these children react badly, some, like my John have their brain swell, their gut blown into Swiss cheese, and we label them autistic biased on behavior. Then their parents are handed forms for special ed preschools, pointed in the direction of the nearest ABA clinic, and reminded to get on the ever growing waiting list for state housing so there will be a place for them when they are no longer able to live at home. Period end of help. It is your issue now Mom and Dad.
Nobody I ever saw in the main stream medical community discussed with me the gut brain connection. By the time most parents learn what really happened to their child and what they need to do to reverse it, things are pretty far gone. When you cannot take your hands or eyes off your child, it’s rather hard to get online and hunt for answers. Answers to questions we should not have to ask, and answers that main stream medical is not giving parents despite years of children successfully walking away from autism with the help from biomedical intervention. When the food that is available for consumption is adding to this issue, and we either don’t know it yet, or know and cannot afford the alternative healthy foods, the issue continues to grow within the child. Where is the outrage over Monsanto destroying our food supply? Most people haven’t got a clue what’s going on. But I can assure you, in the days and weeks to come you will hear the outrage from the general public towards Dorthy Spourdalakis for killing her son and taking the easy way out.
Easy way out? Before you take that stand, spend one 24 hour period with a young man like Alex, leave your money behind becuase Dorthy didn’t have any. Live knowing that you will have to move again in minutes, just as Dorthy did. Every second of the day will be a life and death struggle and all she wanted, was the correct medical and educational help, a place to live where Alex was safe and others safe from Alex. We failed to get that for Alex, and now only in heaven is Alex at peace and the boy he should have been all along. A quick look into the life of Dorthy and Alex.
As for Sky Walker who I mentioned at the beginning of this post, Sky was an Alex with a very devoted Mom. Popular Political Science Kent State professor Trudy Steuernagel was found dead in her home on January 29, 2009. Sky was found in the basement with blood on his pajamas. Legally an adult, but with the mind of a child, Sky was placed in jail until social services could unravel what to do about his Mothers death and how if any way, to charge him with that death. Trudy left behind a letter to be read if she was found dead, telling how her son was violent, but did not understand what he was doing. Her death could and should serve as a warning to others that autism isn’t cute, pretty, or just a different way of being for some people, it’s a real life threatening issue.
Painting the town blue? How about we take that money raised from all those Autism Speaks walks and send back into the autism community and let the board of directors who run Autism Speaks work in the same manner they do over at Paul Newman’s place. I just wonder what that millions might do if we put it back into the children and adults who really need it. Alex’s blue light is gone, or is it, maybe we should use it as a lighthouse beacon to remind us first we need to provide services and proper medical care to those in need. Awareness, we are already aware, it’s time to take action and do more than lip service. For Alex, for Sky, and for all the extreme cases out there, lets stop talking and start doing.
You can learn more about death from autism on the blog Lives Lost to Autism.
For more information on biomedical help with autism and to learn how to apply for grant money to help fund your own recovery program or find free services in your area, contacts are listed below.