Alex Spourdalakis and The Future
Update 3/12. Alex's Mom Dorothy Spourdalakis has a care plan meeting scheduled at the hospital - which, if she does not agree fully to the terms, will mean the removal of her son from her care and his being placed in DCFS
Managing Editor's Note: This comment from our John Stone is well worth repeating here on the main site.
I don't think in the history of AoA any story has struck such a chord as this one. Here we see the catastrophic future of our children - created by modern medicine, and well beyond its capacity to deal with. If it hasn't happened to us or them yet it, it assuredly will. This is the future a greedy industry and sychophantic crony government officials have created for us and our children - the complete failure of human institutions. Hell on earth.
Or we can think of those children in Chad, blamed for their reaction to the WHO meningitis vaccine, and shipped off to die in the desert for the greater good...
Im a mother that fights for my son and will never give up on him! He is an adult with autism that was attacked and assaulted in an state of ohio facility! He was mislabeled "moderately retarded" so they could commit here there. HE HAS BEEN THRU HELL from a system that doesn't understand autism, doesn't know how to work with autistic individuals and blames him and even me for his disability! Because of my advocacy for my son, the corrupt system court appointed an "go along get along" attorney as an interim guardian for placement and medical decisions. The court says "im uncooperative with health care professionals" They know their court-appointed attorney wont challenge them like I will for the survival and rights of my son! I haven't had much support from the autism community. I hope this never happens to another autistic individual and their family. http://www.youtube.com/watch?v=gGJFHh9NcV4
Posted by: Myra Tanksley | June 16, 2013 at 07:04 AM
What happened between these last updates here on AoA and this: http://chicago.cbslocal.com/2013/06/10/body-with-signs-of-trauma-found-in-river-grove/
As a parent of a non-verbal, very stron and growing 8 year old. I worry about these catastrophic failures of our systems: Medical, Legal and Social-Outreach. How could it have gotten to the point that this appeared to be the only way out?
Posted by: Rich O. | June 10, 2013 at 01:14 PM
Now look at risperidone...side effects..and wonder why some puritan thoughts are keeping our kids from trials using marijuana?http://www.drugs.com/sfx/risperidone-side-effects.html
Posted by: barbara j | March 14, 2013 at 10:54 PM
A doc mentioned this in the NEJM today, I know it's old but was surprised to find it up for debate. http://parenting.blogs.nytimes.com/2009/10/20/medical-marijuana-for-children/
Posted by: barbara j | March 14, 2013 at 10:42 PM
I am a single mom with an autistic 6 year old. I don't have much in this world because I devote everything to my child's well being and education and therapies. I live in Oklahoma but I'm willing to drive to Chicago and protest at that hospital for this child. But it won't do any good if I'm alone. Who is with me???? Saturday, March 16th????? Please contact me at [email protected]
Posted by: Pamela Nation | March 14, 2013 at 02:55 PM
I too am very upset that we are getting reports about Alex, but know nothing of how to help directly. Isn't there anyone or any of our organizations in direct contact with the mom? Posting on Facebook with photos of Alex's horrific conditions without any further action does not seem to be doing much. I know so many of us have placed calls, emails, etc. but I feel so sick inside that we, as a community are not doing more to help. This could so easily happen to any of our kids. We need some major action here from our autism organizations, starting with picketing outside this hellhole!!!!!!
Posted by: Valerie Boergesson | March 13, 2013 at 08:52 PM
RE: Susie, are you a friend of the mom? How are you being updated on what is happening with Alex? If the mom has an attorney does that mean she is able to fight having him put into the psychiatric hospital? Is the mom getting REAL help? I am tired of people saying this should be done or that should be done, when it feels like nothing is being done! I want someone to freaking do something! I am visiting every autism related page I can think of and no one is saying anything about the situation. We care and want to know what is happening and we want to know what we can do that will provide real, meaningful help to this mom. I am hundreds of miles away and feel helpless that I can't do more. But I am doing what I can, spreading this story, filing a complaint, contacting EBCALA. EBCALA said they were trying to assist a local attorney. Did they do so? There are autism doctors in Chicagoland. Is anyone offering their services? I want to know that someone is doing something, that this mom doesn't feel alone in this tragedy. PLEASE keep us updated!
Posted by: Donna Z | March 13, 2013 at 06:57 PM
Thank you for the update. A lot of us are having a lot of trouble sleeping thinking about this child in constant distress. If there are any action items for us parents living outside the Chicago area, like funding the legal help, please let us know ASAP.
Posted by: Jenna | March 13, 2013 at 05:27 PM
Jenny M, our moderators can sense an trollgenda from a country mile. 1) No sympathy at all for the boy. 2) Instant attack on Mom. 3) blanket assumption that DCF must be correct (I can't think of a parent in the country who thinks DCF is an angel from coast to coast and never to be questioned) and 4) diagnosing Mom with a label we've seen in the past as a dismissal of the medical issues. No thanks.
"This poor boy obviously has a mother who suffers from "Munchhausen by Proxy". God bless the DCFS and the hospital for trying to protect this boy from his parental abuser (allowing him to eat sheets?? Really?? No wonder he has GI issues!). It seems you are only reporting one very volatile side of the story, and may be unaware of additional mitigating circumstances. Did you fully research this? Are you aware of prior abuse in the home? Did you do a background check on his family? This is poor investigational reporting."
Posted by: Managing Editor | March 13, 2013 at 01:24 PM
Please don't assume that nothing is being done. I live in the Chicago area and know many people who are doing everything they can to help this family. Numerous agencies have been called. Mom apparently has an attorney, now. This is Loyola, folks. I was in a situation with my newborn son who was born very quickly at home before the home birth doctor arrived. The paramedics sent him to the local ER and neglected to turn on the warming mattress. They insisted I not go in the ambulance because they were trying to deliver my placenta. I tried to fight it, but I was a mom who just gave birth. He came in with a low temp. The pediatrician (who I didn't know) told me he may have an infection because of the low temp! I told her what happened and that's why he had a low temp and I wanted to sign out AMA. They then said they would call DCFS if I did so. I was stuck in that hospital unless I wanted to risk my son becoming a ward of the state (not to mention my other kids who knows?) It's not so simple. Loyola is a huge Chicago university medical institution with a lot of power. This is not the whole story, be assured there's a lot going on behind the scenes.
Posted by: Susie | March 13, 2013 at 11:02 AM
I agree with Jenna. Let's find this family a qualified attorney in the area that can start rattling some cages and establish a fund to pay the costs. As Martha so correctly pointed out, this will continue as long as doctors view autism as a mental disorder and not a medical one. Treat the underlying medical issues (i.e. in this case, GI) and the kids get better. Ignore them and they don't. It ain't rocket science.
And "Jenny M", calling the caring mother of this young man a parental abuser and asking for an investigation of the family just shows how completely and totally ignorant you are.
Posted by: Mike | March 13, 2013 at 10:52 AM
For some reason GI issues with autism are considered just psychological issues. We need doctors who understand conditions of the disabled. We need doctors who listen to parents and are willing to figure out what is wrong with those who have IDD severe issues. We need GI doctor's who really care to learn and stand up for what is needed. Fortunately, I found an answer for my son who was sickly, crying out like this one. If I mention what works then I am ignored so be it! At least my son is well, alive, and getting treatment needed. There are solutions but even Wakefield found how difficult it is out there when he was thinking out of the box.
Posted by: Martha Moyer | March 13, 2013 at 08:45 AM
Our community needs to quit pontificating and step up. Does Alex have a lawyer? If not, we need to identify one and establish a fund to help pay for his representation. Otherwise we are just using this situation to get up on our soapbox. This is a precious child who is suffering, and needs to be helped immediately. Can the editors or JB Handley or Jenny McCarthy or Autism One or EBCALA or MAPS or Autism File or Safeminds or SOMEBODY please make some calls and get things organized so that we can have a real action item (sending checks somewhere) instead of just making phone calls to idiots that do nothing? If we cannot save this ONE child, how sad it that? He matters, folks, and it is time to put our money where our mouth is...
Posted by: Jenna | March 13, 2013 at 02:18 AM
This could happen to any of us at any time! There are those who feel that when a person has behavioral issues, they should be heavily medicated with psych meds (which have horrendous side affects), and that force should be used to even take children from the home. I, myself, have learned from others to NOT TRUST, and to only use docs that know about autism recovery. Don't even trust teachers and other professionals. Only those who are actually recovering children understand. Even I didn't understand when I was ignorant. They really don't have a clue!
Posted by: Heidi N | March 13, 2013 at 12:09 AM
"Jenny M" claims the boy is a victim of "Munchhausen by Proxy" - more of pharma's blame game.
Also, what a pathetic attempt at spoofing Jenny McCarthy.
Posted by: Madvocate | March 12, 2013 at 07:19 PM
Jenny M. states: "This poor boy obviously has a mother who suffers from "Munchhausen by Proxy". Really? That makes no sense at all. Hasn't this woman asked two hospitals to do something and hasn't Alex been getting only the treatments/meds that the "doctors" prescribe? It is sick to even imply that she has done something wrong.
In the meantime the doctors are trying to heal his mind and CPS is fine observing all of this?
Sounds a lot like the Elizabeth Wray case in Boston. It all turns my stomach.
Posted by: For Jenny M. | March 12, 2013 at 06:21 PM
Jenny M; you seem very interested in supporting the hospital.Why?
We have seen this 14 year old child tied down for 19 days straight in restraints; but you are fine with that?
You complain about him eating the sheets,(Yes, writhing pain not an issue, but the linens; that is what we should focus on). Meanwhile the hospital staff are apparently unaware of stimming behaviors,and despite having (one assumes), an OT department, there apparently has not been an OT consult for sensory issues, or even the simple provision of a chewing tube.
Is this how you would want your family member to be treated?
'Munchausens by Proxy" is by some considered to be the last defense of a medical group trying to prevent a lawsuit/and or to conceal their own ineptitude..
At this point, some advice for Mom; get a lawyer and if possible also a disability advocate fast, and before the next meeting.
Posted by: Hera | March 12, 2013 at 05:54 PM
299.0 is the kiss of death for medical care. The national news will not touch the story - we are not a "sympathetic community." They have proven that they will avoid any story that portrays autism as medical - because of where it could lead. The mere mention of GI and autism evokes images of Andy Wakefield (BOO!) to the average doc and media person - especially in Chicago which has been openly hostile to medical issues and autism in the Tribune for years. Where is Trine Tsouderos, who was so worried about the supplements I was giving my girls and how I was possibly harming them? Where is Paul Offit - who frets and cries for the health of all children and has a specialty in the gut pain from Rotavirus and also of intussusception? - He could prove that MAINSTREAM medicine can help this boy with a single phone call saying, "Enough Help This Kid."? Where are the folks destroying Dr. U in Chicago because they all know better how to treat autism? Please don't make this about the mother. I don't care if Mom is a Saint or a Sinner - I can see with my two eyes that Alex needs help - blaming Mom is as old as the hills in autism - we're an easy target and we take the heat off the medical community.
Posted by: Stagmom | March 12, 2013 at 05:22 PM
I would call CNN with this story! It has not made national news, once it does, hospital staff and CPS will back off!!
Posted by: Rosa Pettengill | March 12, 2013 at 05:01 PM
This is the wrong place to bring up the M-word, Jenny M.
Posted by: Genny H | March 12, 2013 at 05:00 PM
I'm trying to understand why she can't remove him from that hospital and take him to another one. If it's a safety issue then call an ambulance to do the transfer. This story is horrifying, as I have a 13yr old autistic son with GI issues and can't imagine what this mother must be going through. They are forcing her to agree with a treatment plan or lose custody of him? Something is missing here?
Posted by: Patty Bigornia | March 12, 2013 at 05:00 PM
My son could easily have been Alex. After spending two years in a Pedi GI clinic with no improvement, I was fortunate ten years ago to find a Rescue Angel who led us to a DAN who got his GI track back into shape and improved his behavior due to the pain and imbalance in his body. I am so sorry for Alex. Behavioral therapies do not work for a child in pain. Psych meds do nothing to heal a damaged gut. To recover Alex, they must first heal his body and in so doing, heal his mind.
Posted by: Deborah Z. O'Leary (@REALMOMMA2155) | March 12, 2013 at 04:52 PM
The government has no desire to recognize the gravity of the autism epidemic because that means they would have to take responsibility for the millions of children they injured with vaccines that weren't tested nearly long enough. At this point, if more parents can take them to court and prove vaccine injury (and they are forced to pay for their damages) they will suddenly start being afraid of us for a change.
Posted by: Charise Cole | March 12, 2013 at 04:41 PM
Jenny M, allow me, a veteran Autism Mother with a 19 year old adult son on the autism spectrum enlighten you to a couple of facts surrounding Alex, his medical needs and his mother trying to meet them. The respectable young man, Alex, who was "eating sheets" was indeed "Stimming". Stimming is a common behavior that is quite soothing to an individual many types of sensory disorders. Sensory disorders are of course very well known in our community and perfectly understandable. So, know this, the degree of interest in the case of Alex and his situation at Loyola Hospital is acute. Claiming that Alex's mother is abusive and blessing DCFS is a little ridiculous since obviously you need to do quite a bit of research to catch a clue about autism being a medical condition - and that Alex needs to be given the dignity of any other patient and taken seriously.
So, welcome, you've found the Age of Autism website. The pioneering resource for all the current news and science that surrounds the very real medical epidemic known as autism. So, why don't you get started on your studies and let these good people do their jobs.
Posted by: Wendy Frye | March 12, 2013 at 04:31 PM
Thank you for this excellent commentary.
It is quite clear that autism will continue to be ignored---either rationalized or trivialized. Mainstream medicine has to pretend autism is a merely curiosity--a mystery. Children aren't really suffering with autism. The public is constantly conditioned to accept autism as an acceptable part of childhood. That's what April is all about; the message is clear---all we need is awareness, early detection and intervention.
We've got lots of people who now make their living off of autism and the prospects for the future are endless. The drug industry will no doubt have an endless array of autism meds. "Ask your doctor if this behavior modifying drug is right for your child."
There are classes for kids with autism and even whole schools devoted to the disorder. Therapists provide expensive services. We've adjusted well to the disorder that officially has no known cause or cure. In a few more years we'll have a significant population of young adults with autism and the focus will no longer be exclusively on children. No matter. We'll adjust to that as well---no questions asked.
What's missing in all this is any real concern about THE COST OF AUTISM. Since the federal government has long shown no alarm or any real concern about autism, this burden will fall increasingly on the states. I do believe that the cover-up with continue until the cost simply overwhelms us. We won't even remember a time when we weren't hearing about autism---or having to pay for it.
I was struck something published yesterday. Julie Liske, Director/Brown Center for Autism in Nashville, TN, was shown saying, "I can't imagine what it will be like with the population that we have continuing on into adulthood. I can't imagine. I don't want to imagine it. Something has to be done." http://thestir.cafemom.com/in_the_news/152373/what_happens_to_kids_with
Anne Dachel, Media
Posted by: Anne Dachel | March 12, 2013 at 01:26 PM
What is wrong about US medical-pharma industry. Finally corporate media started talking about this.
Posted by: no vac | March 12, 2013 at 01:02 PM
To understand the culprits of pediatric holocaust in the US, it is enough to see, who are the biggest donors to corrupt US politicians. They are - Big pharma and medical industry. As long as this criminal political system will exists, children will continue to be crippled and murdered for profits.
Posted by: no vac | March 12, 2013 at 12:17 PM
I am wondering whether it would be appropriate for the mother to take Alex to an autism GI specialist who can actually treat him? Staying there in the current conditions is like taking a high school currciculum to a kindergartner and expecting them to pass the exam. It just does not seem feasible.
And why isn't anyone putting clothes on that kid?
Posted by: alternatives? | March 12, 2013 at 10:40 AM
The autism community needs an organization like Home School Legal Defense Association - pay your dues and receive free representation when you/your child find yourselves in situations such as this. Sadly, I'm afrain this will happen more and more often. I also think anyone utilizing biomed/alternative therapies will need this - that covers a lot of people.
The autism/biomed community needs to rally behind the parentalrights.org group - to protect our right to make the decisions for our children. Again, this is a large group of people who together will carry more weight.
Protect parental rights and ensure that all have accessible legal protection. Efforts to insure treatment for our kids and a huge, never ending PR campaign to spread the news to parents. Maybe those things should be the focus, rather than getting bogged down in their "austism is a mystery" game. Let them have their precious schedule - as long as they can't mandate it, the court of public opinion can render it useless.
Posted by: Shelly | March 12, 2013 at 09:25 AM