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Finding Physicians for Adults with Autism

Frustrated doctorOur friends at SafeMinds featured a disturbing study this week. Disturbing but not at all surprising to most of us. Medical Doctors have poor attitudes about their patients with disabilities. And they don't trust their ability to treat them. I have three adult daughters with full autism. Pediatricians were never openly disdainful of my girls, but they glossed over medical care constantly.  For instance, we NEVER had the hearing or vision tests routinely offered. Why? Because my girls could not answer. Not one tried to find a way to make sure my kids had this important health. And they often ignored me when I told them what was going on. When they listened, they would tell me outright that they had no answers. Our most recent pediatrician's office just sent us the "too old" letter for my youngest, who is 20. I liked Dr. S. I'll miss her. Her Dad was a pediatrician, and she always took my concerns seriously. She never made me feel like a whackadoodle. She spoke directly to my daughter as if she was in the room on the table. We have a primary care doc for my older daughters. He's my doc too. He's terrific and kind and listens. Each question I have had, he opens his laptop and Googles it. He doesn't know a single thing about autism. He should be paying me a fee for the continued education credits. I ask, he delivers. Not bad. But I won't always be at every visit with my daughters forever and ever. And that's what we are all going to run into moving into adulthood.  I'm looking for a new primary care doctor for the four of us. Someone younger, which makes me nervous, as I think so many of the young docs are indoctrinated into really hating thinkers like me. But, my girls will need basic care for decades to come, and I'd like a younger doc who will be in practice for 30 or more years. To make matters worse, many people with disabilities like autism are on Medicaid. And few adult-practice MDs take Medicaid because it pays so poorly. Our kids are double screwed. What's your experience to date?

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Health AffairsVol. 40, No. 2: Vital Directions, Quality & More

Physicians’ Perceptions Of People With Disability And Their Health Care

Approximately 12% of  Americans have at least one disability. Growing evidence shows that individuals living with disabilities experience healthcare disparities compared to the general population. A new study published in the journal Health Affairs was the first of its kind to examine doctors’ attitudes on treating people with disabilities. The research involved surveying 714 practicing physicians. Sadly, the study’s initial finding revealed that 82% of the physician respondents believed that people with significant disabilities experience a worse quality of life than those without disabilities. Two other depressing statistics came out of this research. Only 40% of doctors were confident they could provide the same quality of care to a patient with a disability than they could for those without. Additionally, just a mere 56% “strongly agreed” that they welcome people with disabilities into their practice even though the Americans with Disabilities Act requires equal access to healthcare. The study’s lead author, Lisa I. Iezzoni,  a health care policy researcher at both Harvard Medical School and Massachusetts General Hospital, was not surprised that most doctors had negative attitudes about patients with disabilities. However, she reported to be shocked by the magnitude of physicians stigmatizing views. Iezzoni along with the other study’s authors suggest that adding disability training in medical school could be an excellent way to change perceptions about treating those with disabilities. Adding this curriculum may help correct healthcare disparities for this fragile population in the future.



Comments

d

One possible solution, although not financially feasible for everyone, is to look for a physician with a Direct Primary Care practice. They are not beholden to a broken and corrupt medical system, they are able to spend much more than three minutes with a patient, and they seem to truly care. We use this for my son and ourselves, even though my son is also on Medicaid. The cost can be around $50-70 per person per month, they do not deal with insurance companies or Medicaid, but when you consider the cost of disability/injury due to just one medical error by a typical physician who doesn't listen or care to get to know you/your child (just look at how much all of us have spent on managing our kids' vaccine injuries over the years), it definitely seems worth it.

We've had some real uncaring duds over the years for my son, for sure. What I have found, though, is that the doctors who are religious (around here, that would be Christian) seem to treat patients with autism/disabilities with much more kindness and respect, so perhaps you could tap into church communities, directories in which Christian businesses and practices advertise, etc. for recommendations? Just a thought.

I know we just got lucky with finding our family doctor and I have no idea what we will do if/when he retires. I don't even want to think about it!

Gerardo Martinez

Our experience has been poor. I think out of maybe 20 doctors total that have ever seen our vaccine damage son- three had good bedside manners and really seemed to care. Sad to say the rest- well they stunk!(me being polite). One was an urgent care doctor who had a good bedside manner and actually addressed my nonverbal son as a person!. The two other were alternative Medicine doctors, who we contracted with for services. One was A plus and really sympathized with our Son's situation. Too bad for us he was in his early 80's when we first found him. He has since retired.
Blessings from Frozen Texas!

letMeGo

I cannot stand being shrugged at or looking at pictures of people shrugging, as an autistic who was raped, restrained, injected and pinned down by several people and shrugged at in a mental ward as a teenager unable to attend high school, I want to die every day because of how I was treated, and equally so because of my condition and my lifelong vulnerability to violent tantrums and inability to have any long term benefit from the expensive therapies i was given.

I would prefer peaceful assisted passing as opposed to living with traumatic mental ward and autism flashbacks and co-morbid conditions, but assisted dying is still illegal or requires terminal conditions in my country. Don’t want to spend the rest of my miserable life being trapped in a mental ward or group home or in therapy rooms. I want to die with dignity instead. As soon as feasible.

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