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Living with Autism


February 25, 2015

Avoiding Medical Neglect of Autistic Patients

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1.     MYTH: Autistic patients with behavioral issues are acting out in hospital because they aren’t in a familiar environment or they “miss their family.”
REALITY: Parents of autistic children aren’t morons. Our children were ‘acting out’ and “agitated” in their familiar settings, such as home, day treatment programs and classrooms BEFORE they got to the hospital, which is exactly WHY they ended up in the hospital. So, not being in a familiar setting isn’t the problem here. Please don’t oversimplify things.

2.      MYTH: Autistic people have behavioral meltdowns simply because they are autistic.  We don’t need to investigate any medical issues. It’s just autism.

REALITY: Autistic people have baseline behaviors like any other person. When their behavior suddenly and dramatically changes, it may be a sign there is an underlying, undiagnosed medical issue going on. Think about babies. They can't talk. They cry daily. Yet, when that cry becomes wailing for days, you know something is wrong. Ditto Autistic patients with self-abuse. YES, they may have self-injurious behavior (SIB). Yet, when that SIB CHANGES..and it goes from baseline to crazy non-stop SIB, something is wrong.  Non-verbal autistic people often use extreme self-abuse and increased aggression to communicate pain or discomfort because they can’t tell you what is going on. And what is going on is much more intense in their mind, than what you or I would feel. You must investigate and rule out, until something is found. These are vulnerable patients. You can’t treat the autistic patient the same way you would treat a non-autistic patient. They are unlike any other patient. They present differently. They often have extreme tolerance for pain, but that doesn't mean they aren't in pain or discomfort. They are able to handle it better than we would, for longer, which makes them more vulnerable to misdiagnosis. Never assume they're fine without at least a basic lab work up and exam when they're presenting off baseline.

Consider the case of an AGITATED autistic boy discharged from a hospital, who died two days later. A simple blood test and IV hydration would have saved his life.  According to news reports,

The hospital assessed Harry (the autistic boy) as a category 2 patient, which suggests that he should be seen more urgently than someone coming in off the street, and he was found to be dehydrated. Doctors wanted to run blood tests and put him on a drip to rehydrate him, but when Harry was transferred to the Children’s Assessment Unit he was becoming distressed as the family were left waiting for hours. Because it did not appear that lab tests or IV drip were going to be carried out the same day, given the long period in which parents had waited, his parents asked if they could take Harry home in order to allow him to get some rest, and to return the following morning, which the doctors agreed to....The following day the doctor said Harry seemed better and he was discharged saying a blood test and other investigations were no longer necessary. His condition remained the same throughout the next day until little Harry collapsed and turned blue. He was rushed to hospital by ambulance. Resuscitation attempts were unsuccessful. Harry died. A blood test was carried out during Harry’s attempted resuscitation. Blood test revealed there were high levels of sodium in his blood, which is often seen in cases of severe dehydration and is quite common in young children with learning difficulties and special needs. The results of a peri-mortem suggest that Harry’s cause of death was due to severe dehydration and acute kidney injury.”

3.      MYTH: Blood tests, CT scans and MRIs are too hard to do with autistic patients because they become agitated. We don’t want to upset the autistic patient.
Reality: That’s why sedation and temporary restraints exists. Go the extra mile, if necessary. Surely, it will be cost effective to diagnose the problem compared to multiple stays in the hospital. Don’t ignore diagnostic testing simply because the autistic person is a difficult patient to sedate or you need to temporarily restrain to get proper diagnostic or treatment going. Get the tests done.  Consider the case of the autistic man who punched himself in the ear for years, and then one day, a test revealed he had bone infection that didn’t show up on labs. Or the autistic man who had undiagnosed gut issues that were driving him to beat himself. Yes, some self-abuse and aggression in autism is behaviorally related, but listen to parents and caregivers when they tell you, “This is way off baseline, something is wrong.”

4. MYTH: Parents of autistic children come to the ER room because they want a break.
Maybe some do, but I sure don't. I don’t want to be in the ER room, trust me. I hate going there. The smells. The sounds. It makes me sick. The only reason my son ends up there is because we were out of options and desperate to help our autistic adult child. We have no other choice. We depend on the expertise of doctors and professionals to help autistic children, no matter their age. This is the age of autism, we can’t turn our backs on this vulnerable patient population. We must continue to find ways to better diagnose, quickly diagnose and properly treat this very special population. 

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