Dr. Cara O’Neill is Chief Science Officer for Cure Sanfilippo Foundation and mother to a 10-year-old daughter with Sanfilippo Syndrome. During a wide-ranging interview with Sonia Adnan of Instagram’s autismlifegram.md, they explored the mentality toward treating patients with neurological diseases that often leaves parents adrift and alone in the fight for their children.
“There is a pervasive … underlying problem in our society of how we look at, think about, people who have terminal – particularly neurologic diseases, neuro-cognitive diseases, dementia – that brings into this paternalistic thought process of, ‘Well, is it really helpful to treat them? Is it really in their best interest?'” said O’Neill.
“‘What’s their life worth?’ is this very big issue. And I think that it underlies a lot of actions and decision-making process, not consciously. … But we have to be very careful about that kind of bias that underlies all of those decisions about how aggressive we are in testing and pursuing thinking out of the box for our patients, getting them the best care,” she continued. “They really need a lot more than maybe a patient that has treatments sometimes.”
She illustrated the point by sharing a personal encounter while visiting a specialist. “I am told, ‘Well, what do you want us to do? When do you want to come back? Come back whenever you feel like it.’
“So I’m left scratching my head, thinking ‘I’m here as a mom … trying to seek care for my child and, not that I’m expecting the clinician to do something, because I’m realistic about what can be done, but I am expecting them to be a part of the team. And to help care of my child as she progresses.”
“Part of that is knowing my child along the way and understanding that progression, versus, ‘Okay, I’ll meet you/see you when something really bad is happening. But I won’t really know the history beforehand. Or, I’m not going to be looking out carefully, proactive, for thing for you because, maybe, I’m swamped with patients and this isn’t the best use of my time.’ That’s the feeling it gives you.”
Adnan concurred, sharing a similar experience. “[My daughter] Mina was going to be entering kindergarten … and the [state’s] Autism program said, ‘We think she can be mainstreamed somewhat.'”
Adnan was resistant to changing her daughter’s school arrangement, but was told by the speech therapist, “If you want to keep her [in this program], you’ll have to find [another] speech therapist … I’m not going to work with Mina because she has no zest for life and I cannot teach her anything.”
O’Neill and Adnan also discussed on autismlifegram.md the value of getting a diagnosis as early as possible, even if there isn’t an available treatment. Among the myriad of reasons to know earlier are family planning and decisions about where to live.
Watch the entire interview with autismlifegram.md, which included several other topics and issues.