An autism mom says #AuthenticAwareness means knowing medical problems often go under-diagnosed and untreated.
By Judy Talbot
My daughter is 36 and has autism. When she experiences a significant increase in behaviors, we suspect some underlying medical problem. Unfortunately, our experiences in emergency rooms have tended to blame her behaviors on her autism.
One time she kept saying, “Ow that hurts,” but would or could not say what specifically hurt, except it seemed to be somewhere near her stomach.
At the ER, the doctor would push and ask if it hurts. She says, “Yes.” They push another place, and again she says “Yes.” After a while the logic seems to be, Oh there isn’t anything wrong, it’s just typical autistic behavior.”
I explain that no, she has a high tolerance for pain. After some time, and with my persistence, her primary doctor ordered a PIPIDA scan to view the liver, gallbladder, bile ducts, and small intestine. And… it showed her gallbladder needed removal immediately. All that time with her in all that pain, I wished the test was run in the ER, instead of blaming autism.
Another time, my daughter's behaviors were blamed on autism, but some time later, when she was having a sonogram for incontinence they found she had a cyst the size of a grapefruit on her ovary. Again, surgery needed.
During many of my struggles physicians have advised me to medicate her, basically, drug her until she shuts up. Too many drugs (eg, antipsychotics) were tried yet nothing helped. In fact, a medication she was on caused pancreatitis, and by the time the doctors finally believed me that her behaviors were not ordinary, they found she was suffering necrotizing pancreatitis. And it almost killed her.
I realize that not all behaviors are caused by physical pain, and that every person with autism is different. But what I do know is that we must find better ways to diagnose non- or minimally verbal patients. Clincians who have the patience and skill and willingness to treat our kids are a rare breed, and our children are paying the price.
Judy Talbot is the mother of an adult daughter with autism.