Thank God I Am Not Autistic! Medical Neglect in Children with Autism

 
Thank God I am not autistic.  If I was, I wouldn’t be here today writing this article.  Before you go ballistic on me, let me explain what I mean by that statement.  If I was autistic, I would still be able to think. I would still be able to write. I might even be a better researcher than I am now.  However, If I was autistic I wouldn’t be able to write this article because I’d be dead right now.
 

My hospital bracelets.

My hospital bracelets.

Last Friday night I suddenly became very sick with projectile vomiting and severe diarrhea. I have never been so sick. It started around 9:30 Friday evening and by 3:30 Saturday morning I knew I was in trouble. There was nothing left to throw up but my body kept trying to get rid of whatever it was that had invaded and was trying to kill me. I realized this was no simple virus and if I didn’t get to the hospital for treatment I might not make it. Of course, I also realized there was the possibility that I was being overly dramatic. My husband thought so, too. He wasn’t thrilled about going to the hospital in the middle of the night. He’s more of a “power through it, honey” kind of guy, but he could see I was serious, so off we went. I am so thankful we did.

When we got to the Emergency Room it was only a matter of minutes before I was taken to an exam room and within a half hour I was on IV fluids, and had received a dose of medication to stop the nausea. Blood work had been taken and my primary care physician was notified. Within another two hours I was in a private room on the med/surg floor with a crew of caring nurses attending to me. I was very fortunate. At the time I had no idea how fortunate I was. It wasn’t until the following day when my family doctor came for rounds that I learned just how serious things had been. My doctor started asking if I had been taking diuretics. “No.” He asked if I had been taking any new supplements. “No.” I asked if I would be going home today. “No.”  That’s when I learned that my potassium had bottomed out. “It was in the critical range. Your potassium was 2. We need to keep you for a while and build your potassium back up.”

Thankfully, the doctors and nurses who treated me did the necessary tests to find out what was wrong. They gave me the treatment that was needed to stop the vomiting and diarrhea that led to the hypokalemia (low potassium) in the first place. Once they stopped the vomiting and diarrhea, they were able to stop the loss of potassium and begin the replacement. I went home after two days in the hospital.

I was fortunate. Thank God I am not autistic. If I had been autistic, things could have gone much differently.

Alex Spourdalakis has autism. For nearly four weeks (as of this writing), Alex’s mother has been trying to get help for her son’s gastrointestinal problems, manifesting as vomiting and diarrhea. Unfortunately, because Alex carries an “autism” diagnosis, he has not been treated with the same kind of care that I received. Alex’s doctors don’t see him the same way that my doctors saw me. They see autism. They see a child who is nonverbal, who can’t tell them what is wrong, and who acts aggressively during times when he is having bouts of diarrhea and vomiting.  Instead of testing to find out what’s causing the vomiting and diarrhea, Alex’s doctors are treating his aggressive behavior with psychotropic medications. They are more concerned with keeping him under control than they are with treating his medical condition.

I wish I could say that what is happening to Alex is an isolated case; an anomaly. Sadly, it is the norm for children with autism. Because they have an autism diagnosis, their physical health is often ignored. When the child is small, he or she doesn’t present much of a problem to control. But Alex is fourteen. It takes more to control him. It takes a lot of psych meds. It apparently also takes shackles and chains; at least that’s what Alex’s doctors believe. And therein lies the problem. It’s what they BELIEVE. When doctors “treat” patients based on “belief” rather than “knowledge,” the patient is the one who suffers. All that is necessary to gain “knowledge” about what’s going on with the patient is laboratory testing and clinical assessment of the body. This is not being done for Alex, and it’s not typically done for other children with “autism.” Why? Because they have “autism.”

This MUST CHANGE.

WE HAVE A CRISIS ON OUR HANDS.

AUTISM IS NOT MENTAL.
AUTISM IS MEDICAL.
MEDICAL ILLNESS REQUIRES MEDICAL TREATMENT.
 
Please read the following article. Read it. Print it out. Email it. Share it on facebook. Give it to your child’s doctor. Give it to your friend who is considering going to medical school. If you are in medical school or nursing school, give it to your classmates and professors.
 

Autism is Treatable:  The Difference Between Standard Medical Practice and The Biomedical Approach

 
Once medical professionals get past their own prejudices, fears, and outdated belief systems, then AND ONLY THEN, can the healing begin.  I am begging.  If you are a doctor, or if you know a doctor, please share this information with him or her. We have to work to educate the medical community about the problems that are so common in children with autism. This must be accomplished with all possible speed. Our children’s lives depend on it.

To learn more about Alex Spourdalakis, please read the following article, written by Lisa Joyce Goes for Age or Autism.

The Case of Alex Spourdalakis: Continued Ineptitude at Loyola University Medical Center.

 

Add a comment »9 comments to this article

  1. Major difference between you and Alex is that you had a “family doctor (who) came for rounds” and Alex has no such doctor Your doctor knew you and history, and you had already established that he is a good match for you. And, it’s not a matter of health care discrimination against people with Autism. It’s about choosing the right doctor who will treat you as a person first. What happened to Alex happens to LOTS of other people – it’s not an autism issue. I’m overweight and for years a multitude of doctors dismissed my complaints. I was told to “stop eating the white stuff” – despite the fact I had a healthy diet – a fact they would have discovered IF they had bothered to ask. I was practically bedridden in pain and immobility before I finally found one Physician who actually saw me as a person and not an obese person. He discovered I had Thyroid Cancer, Lyme Disease, and a severe case of Adrenal gland dysfunction. So, I just want to say that this happens to all of us, and the moral of the story is: Don’t give up – you have to just keep going to other Physicians, until you find the one who will work with you and see you as a person first. I am grateful I live in a country where I can choose my Physician. In other countries, such as Canada, people tell me they have no choice.

    Reply

    • I understand your position, Theresa. And I agree with you on most counts. I know this kind of thing happens to lots of people. It is especially common for women who have been diagnosed as having Chronic Fatigue Syndrome and Fibromyalgia. There are of course other groups of patients who are treated similarly. However, the treatment of Alex and so many other children like him is pervasive, and it is because they carry the autism diagnosis.

      Reply

      • Marci, Thank you for your consideration of my viewpoint and kind response. I see your point and remain open to learning more about this.

        Reply

    • In response to Theresa … you were bedridden in pain, but were you ever put into 4 point restraints for greater than 22 days and going forward and continued to experience unbearable symptoms?

      Reply

      • Jo, believe it or not, I have had that experience as well on multiple occasions, but to hear that story you’ll have to wait until I finish writing my book.

        Reply

  2. I try to avoid mainstream doctors and hospitals at all costs because of all the horrible neglect and callous disregard when it comes to the diagnosis of autism! It really sucks for our kids and us these days…you’d think people would get ‘smart’ already!!!!

    Reply

  3. My child with autism had a congenital spinal malformation that should have been detected sometime between age 2-5, maybe at the 7 year growth spurt at the latest and could have been corrected with surgery thus effecting his development postively. It has caused him to be incontinent, physically weak and now to have orthopedic malformation. All of the telling symptoms that would have lead to the condition being considered we written off as just part of his autism, until this year at age 14, when an unusually astute neurologist suggested this possible issue. We did an MRI and YES…having NOTHING to do with autism, he needed a surgery to correct something that has probably been causing him significant pain for years!!! Maybe this has contributed to the severity of his autism? Ya think? Try being in pain for years and see if you don’t check out socially and academically.

    Reply

  4. As the mother of an autistic child, and the aunt of one that lives in a different state than where I live, I must agree to a point. It DOES matter as to where you live. If you’re not in PA or NY, and you have an autistic child, that child is basically screwed. Most states do not want to take the time to provide resources, and therefore the doctor is not able to properly care for the child. If PA and NY’s autism programs were national this would not be an issue at all. This goes for educational, behavioral and medical programs and care. I had one instance where I had to take my son to the ER rather than his PCP. I wasn’t sure about the Dr (though I was comfortable seeing him for myself). As the Dr tried to ask my son how he was feeling, I told him he was autistic. The Dr IMMEDIATELY changed tactics, made my son perfectly comfortable and at ease (shoulder rubs do the trick every time, I did not tell the Dr this, he just did it) and it took some time but the Dr worked out a means of communicating with Jimmy and finding out where it hurt and got things straightened out. In Oklahoma, my son would have been given benadryl and sent home as soon as I mentioned autism.

    Reply

  5. My 9yo son spilled boiling water on himself while making lunch, and I brought him screaming to the ER… He suffered from obvious burns, so there was no question of the problem. He is a high-functioning autistic, to the point most people would never guess his diagnosis, and he suffers from major sensory issues. Burns hurt, and so does the tingling cream applied to burns if your body is not processing correctly.

    So, the doctors pumped him full of a sedative and left. They left me pouring water on his body… for hours… while he screamed, and then, when the sedative did not calm him and they couldn’t justify I higher dose, they discharged him. He suffered 2nd and 3rd degree burns, and they charged his insurance a thousand dollars for sedatives… because he was autistic.

    Reply

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