I helped Lil D get ready for school this morning, as I always do. Wake up, go to the bathroom, strip sheets that have been dirtied by yet another accident, brush teeth, change clothes, downstairs for breakfast. Put lunch in his backpack, and when the time comes, put the harness on and escort him to the bus.
Lil D has worn a harness on the bus for years. On the special needs bus my son rides, you need to be in a harness if you have a tendency to leave your seat, encroach others or have meltdowns.
So, for the sake of Lil D’s safety and of those around him, he wears one. He goes through cycles. Some months he is agitated and unpredictable on the bus, and then it’s good that the harness keeps him safely seated. Other times he exhibits calm behavior, and the harness isn’t necessary. We tried to go harness-less a few times, but it wasn’t working.
Why? Because Lil D is conditioned to the harness. He wants to wear it. He is uncomfortable being seated without that feeling of being strapped in. It makes me sad, but it is what it is. What do you do when the law touts “least restrictive environment,” but your child is conditioned to a restrictive environment?
I’ve been thinking about this lately, the things that children with autism spectrum disorder, especially those who are on the severe end of the spectrum and are nonverbal, get used to. The things they endure. The things they cannot complain about. The things that we decide for them on their behalf, using our best love and judgment – based on our knowledge as their parents, our carefully honed research on their condition and our roles as autism experts.
The Year of Autism Hell
I’ve also been thinking a lot about the last year of autism hell. Anyone who reads this blog knows our story — the year when Lil D’s health and behaviors deteriorated to a point of utter pain and despair. The year when self-injurious behavior became an unwelcome inhabitant of our house, an ugly, awful visitor who wouldn’t leave no matter what we did. The year when I reached my breaking point, but by the grace of God pushed on through until we figured some of the mystery out.
When things were at their worst and I kept pushing and pushing – could it be this? Could it be that? SOMETHING must be medically wrong with my son. – I was met with support and loving questions from my family. They saw Lil D suffering horribly, they saw him slapping his face and head banging and biting and pinching his arms. They saw him attack those who were trying to stop him from hurting himself.
While I made appointment after appointment and stayed up late into the night doing research and connecting with other ASD parents, they kept asking me about psyche medicines.
Bless their hearts. They have Lil D’s best interests at heart – they wanted to see the suffering end. My point back to them was – I, too, don’t want him to suffer. But if psyche meds calm him down and “zone” him out, then how will we figure out what is causing the pain? (Disclosure: He does take a psyche med, but that was already in place before the year of autism hell)
Autism is complex, my husband told me. No one really knows. The research and medical theories being put forth do not have mainstream medical backing. My husband is a doctor, and he has been a rock of support on our autism journey, but a voice of skepticism at times. It has helped temper me and ground me to pursue therapies that make sense for our son instead of chasing every new biomedical therapy out there.
But other times it drives me nuts. Think outside of the box, I say. There can be medical reasons for the behaviors exhibited by ASD kids. Autism isn’t just psyche, it’s medical, too. It’s a mystery, but there are things we can check for. The question is – when will mainstream medicine get on board?
I bring all this up because there is a sad, horrible, awful situation going on that has so many in the autism community across America (and beyond) up in arms. I first read about Alex Spourdalakis last week on a local autism Facebook group I belong too. The 14-year-old boy, son to Dorothy Spourdalakis, has autism and cognitive impairment. He began to have neurological issues, sleep issues and gastrointestinal problems (according to his mother, who is quoted in the article) in October 2012.
This February, a few weeks ago, he was admitted to a local Chicago hospital, where he spent 13 days in the ER bay under locked restraints, due to physical aggression he was exhibiting.
Let me repeat that. Locked restraints.
He was then transferred to Loyola Medical Center because it was determined they had the specialists (pediatric gastroenterology, neurology and anesthesiology) who could help.
The story gets worse from there. Click here to read updates. The last update I read was from March 12, which was day 22 of the ordeal. From what I am reading on Age of Autism (a “daily web newspaper of the autism epidemic”) and on the FB walls of autism activists who are trying to help the Spourdalakis family, the news is grim.
Reports are that Alex is being denied proper medical treatment, that he is being treated with psychotic drugs. That he is now conditioned to the restraints, and when not in them, is very agitated. That he is in an unclothed state. That security guards are posted outside his room. That his pain isn’t abating, yet doctors aren’t performing gastro medical testing or other medical testing.
I’ve also read that Alex’s mom is being pressured that if she doesn’t accept Loyola’s course of treatment, DCFS (Department of Child and Family Services) will be brought in and she may lose custody of Alex.
Let me put forth a few caveats right now. There has not been much reporting (if any) in the mainstream media about this. I am getting my news from autism news organizations and activists, so obviously I do not know the hospital’s side of the story. Local media seems to be backing off the story, citing the problem of HIPPA violations. As a journalist, even when I am writing blog posts, I want to be fair and hear all sides, and I am unable to do so in this situation.
But, enough information is coming from on the ground to sicken anyone following this story. Even if a fourth of this is all true (and there’s enough to make me believe it is), we should all be appalled. And we should all be afraid of what this means for the future of children and adults with autism spectrum disorder within the mainstream medical community.
The Coming Storm
I look at the dates of when Alex’s ordeal reached a crisis points, and it physically hurts me because it coincides close enough with our own year of autism hell. I have a husband with a medical background who, though skeptical at first, supported me and went the distance with me for our son.
When we had appointments with a local neurologist who is known for disdaining the theories and questions of autism parents (I needed him to order a variety of medical tests for our son), I brought my husband and my father (who has a Ph.D. in pharmacology) with me and Lil D as to provide some weight to the appointment. I knew the neurologist would listen to my husband, not me.
After the appointment, knowing that we had a month to wait until Lil D would be admitted for an overnight hospital stay to undergo the extensive testing, I questioned myself over and over. My husband and I discussed whether Lil D needed to be under the care of a local psychiatric hospital. We were at our wits end.
We are here today, in a better place, because we got the right testing done, and something showed up, and that led us down another path. And, we started treatment, and a thousand of other things that has led to a healthier Lil D today. But this is so far from over. There is so much more we need to do.
I think about us, and I think about Alex suffering in Loyola Medical Center. And I think – that could be us.
Here’s the thing. Alex’s ongoing story has to be a huge wakeup call for everyone.
One mother (and friend of mine), whose son has autism is nonverbal and has medically complex issues, said to me:
“In the bigger picture I am scared for all the individuals on the spectrum [who] will be bearing down upon our medical system. What is going to happen to all the adults on the spectrum when they begin to have routine health problems such as hernias and gallbladder attacks and heart attacks? The system is woefully unprepared to care for these individuals, and there is a tidal wave of them heading straight for them in the coming years. Are they going to deny care for all these individuals because they cannot communicate where their pain is? Because they act in the only way they know how to express pain? Honestly, this scares me more than anything.”
Another mother of a child with autism (and friend of mine) had this to say:
“There are many honorable and well-intentioned healthcare providers out there. But the ‘system’ can work against them — there are a lot of institutional protections put in place, ostensibly to protect patients and caregivers but usually with the real basis of protecting the interests of the shareholders and stakeholders of the institution and the payors (health insurance companies and their bedmates the pharmaceutical/medical equipment, manufacturers). … Imagine how confusing it is for a parent who isn’t knowledgeable about how these institutions work?
“And who is there with a sick, aggressive, and needy child? Also remember that when people see a person, they see their appearance and behaviors first. Yes, they should see beyond those, but they don’t. Behaviors to the general public and unfortunately to medical professionals still signal ‘mental illness’ — meaning that mental health professionals get called into the picture first off. I don’t think they’ll often treat a person who isn’t calm/has self-control. Of course that’s wrong as we know it, the medical staff should be better educated, but they aren’t.”
What will happen to Alex? What will happen to the thousands upon thousands of children (and adults) with autism spectrum, so many of them on the severe end of the spectrum and unable to express what is wrong when they are sick? How can the medical establishment at large treat our children? It certainly cannot go the route of what is happening to Alex.
Just because children like Alex (or my Lil D), cannot speak for themselves doesn’t mean that when they are in pain, when they are exhibiting alarming behaviors and it seems like they are in distress, that they should not be treated as humans. Safety, restraints – it’s all a very touchy subject with many things to consider. But the kind of shackles Alex was put in? Are you kidding me?
I’m not dismissing the use of psychiatric drugs. But I am saying that to focus on that, to chalk up seemingly mysterious symptoms or aggressive behaviors to “its autism,” well that’s a most unjust and unfair way to treat children and people with ASD. Listen to the person with autism. Listen to his mother and/or caregiver. If the person is nonverbal, there are other ways to listen.
Said one more mother with an ASD child, “One of the things as I parent I didn’t originally realize is that autism is a diagnosis based solely on observed behaviors. It does NOTHING to explain the why behind the behaviors. … While you ‘need’ a diagnosis to get the appropriate behavioral and/or educational supports, it also means that you may not get the appropriate medical care, because it will be written off as ‘autism.’”
There is a change.org petition going around about this. You can sign it here.
You can also contact the Joint Commission customer service line at 630-792-5800 lodge a complaint. This is a governing body that accredits medical institutions.
Click here to read a CNN iReport, then choose the green button so CNN will report on the story.
You can make noise.