Barriers to Effective Medical Care for Autistic Adults by Lynne Soraya
Why is it hard to get good medical care if you're on the autism spectrum?
Once a week, I host a Twitter chat on issues relevant to living as an autistic adult. One evening, I got a tweet from a participant, who suggested a topic. “Could we discuss Doctor visits and how to make them more comfortable?” she asked. It was a topic I’d been meaning to cover for some months, after a hospital visit that brought me up against some of the invisible barriers those of us on the spectrum can face in medical care. The discussion that ensued was a lively one, one which showed that I was not alone in my concerns. READ MORE
Why is it hard to get good medical care if you're on the autism spectrum?
Once a week, I host a Twitter chat on issues relevant to living as an autistic adult. One evening, I got a tweet from a participant, who suggested a topic. “Could we discuss Doctor visits and how to make them more comfortable?” she asked. It was a topic I’d been meaning to cover for some months, after a hospital visit that brought me up against some of the invisible barriers those of us on the spectrum can face in medical care. The discussion that ensued was a lively one, one which showed that I was not alone in my concerns. READ MORE
Beyond Behavioral- The necessity of medical tests for ANY behavioral changes in a nonverbal person
by Thoughts of an Introverted Matriarch
I may have briefly mentioned some of Beans violent meltdowns lately. I tend not to share a lot of the personal day to day happenings that I think may reflect negatively on my kids. Not because I think one should never talk about autism in a negative light, but because I feel there needs to be a limit to how much of my children's stories I share with the public.
Anyway, back to my point... He has been having pretty severe meltdowns several times a day that have been leaving the whole house exhausted. Obviously, the meds he was taking were no longer helping, so I took him off of them. His mood improved overall, but the meltdowns did not cease, even a little.
When I took him to the doctor about it the first question was if I wanted to try more meds.
That is never the right first question when dealing with a nonverbal autistic child. Really, any autistic child, but especially not one who is extremely limited in communication. READ MORE
by Thoughts of an Introverted Matriarch
I may have briefly mentioned some of Beans violent meltdowns lately. I tend not to share a lot of the personal day to day happenings that I think may reflect negatively on my kids. Not because I think one should never talk about autism in a negative light, but because I feel there needs to be a limit to how much of my children's stories I share with the public.
Anyway, back to my point... He has been having pretty severe meltdowns several times a day that have been leaving the whole house exhausted. Obviously, the meds he was taking were no longer helping, so I took him off of them. His mood improved overall, but the meltdowns did not cease, even a little.
When I took him to the doctor about it the first question was if I wanted to try more meds.
That is never the right first question when dealing with a nonverbal autistic child. Really, any autistic child, but especially not one who is extremely limited in communication. READ MORE
Self-Advocacy is Only Half of It – On the Importance of Listening
by Caley at Autism Spectrum Explained
"...the biggest problem at the orthodontist was when they ignored my fledgling attempt at self-advocacy. They had just increased the length of my orthodontia and it was causing my jaw to hurt horrifically. I told them to stop, but they ignored me.
Around five minutes after they completed the procedure, I purposefully bent the orthodontia with my mouth, hoping that would force them to fix the problem. Of course, everybody got VERY angry at me. And I had to make up a story about being bullied at school because of my orthodontia so they would finally stop getting mad at me. They then left it as it was beforehand without the increase in length.
While I was bullied for other things, I definitely wasn’t bullied for my dentistry. Truthfully, they were the real bullies by taking away by bodily autonomy and ignoring my claims of pain. READ MORE
by Caley at Autism Spectrum Explained
"...the biggest problem at the orthodontist was when they ignored my fledgling attempt at self-advocacy. They had just increased the length of my orthodontia and it was causing my jaw to hurt horrifically. I told them to stop, but they ignored me.
Around five minutes after they completed the procedure, I purposefully bent the orthodontia with my mouth, hoping that would force them to fix the problem. Of course, everybody got VERY angry at me. And I had to make up a story about being bullied at school because of my orthodontia so they would finally stop getting mad at me. They then left it as it was beforehand without the increase in length.
While I was bullied for other things, I definitely wasn’t bullied for my dentistry. Truthfully, they were the real bullies by taking away by bodily autonomy and ignoring my claims of pain. READ MORE
Suggested Questionnaire for Healthcare and Related Professionals – please share widely by Restless Hands
I have head many complaints from autistic people and other people with disabilities about their struggles in communicating with healthcare professionals, etc.. I propose a simple questionnaire for professionals to use. These would be standard intake questions, and the answers would be put at the front of the patient/client’s chart.If you like this idea, please take this quick online survey!!!
If I get enough positive feedback, I will try to make this tool become a reality. I don’t know how, but I will try. Please help me spread the word. READ MORE (links on blog)
I have head many complaints from autistic people and other people with disabilities about their struggles in communicating with healthcare professionals, etc.. I propose a simple questionnaire for professionals to use. These would be standard intake questions, and the answers would be put at the front of the patient/client’s chart.If you like this idea, please take this quick online survey!!!
If I get enough positive feedback, I will try to make this tool become a reality. I don’t know how, but I will try. Please help me spread the word. READ MORE (links on blog)
Atypical Pain Expression by Notes on Crazy
Two minutes into my walk to work this morning, I thought, “I am not ok.”
I kept walking.
Five minutes into my walk to work this morning, I again thought, “I am not ok.”
I kept walking.
Ten minutes into my walk to work this morning, I thought for a third time, “I am not ok.”
I happened to be stopped waiting for a walk signal, and so I sat down on a convenient bench.
I very consciously stopped and thought…
Why am I not ok? READ MORE
Two minutes into my walk to work this morning, I thought, “I am not ok.”
I kept walking.
Five minutes into my walk to work this morning, I again thought, “I am not ok.”
I kept walking.
Ten minutes into my walk to work this morning, I thought for a third time, “I am not ok.”
I happened to be stopped waiting for a walk signal, and so I sat down on a convenient bench.
I very consciously stopped and thought…
Why am I not ok? READ MORE
Being Disabled and in the Hospital by Amy Sequenzia
Being disabled and in hospitals is always scary because our lives is not valued as the lives of non-disabled. I was, in a way, lucky but the policies still need a lot of improvement.
I recently had surgery, something that was supposed to be quick and simple, but complications turned my one planned night in the hospital into nearly one week.
The surgery was planned, I had a chance to choose the doctor and prepare my instructions and concerns before the first appointment – sometimes, during appointments, I am unable to type, because of seizures or overwhelm. READ MORE
Being disabled and in hospitals is always scary because our lives is not valued as the lives of non-disabled. I was, in a way, lucky but the policies still need a lot of improvement.
I recently had surgery, something that was supposed to be quick and simple, but complications turned my one planned night in the hospital into nearly one week.
The surgery was planned, I had a chance to choose the doctor and prepare my instructions and concerns before the first appointment – sometimes, during appointments, I am unable to type, because of seizures or overwhelm. READ MORE
Autism and Exercise: Why It's Frustrating by Cinder McDonald
It would be very easy to draw a quick conclusion that the majority of autistic people are too lazy to exercise. We are often found playing video games or noodling around on our iPads. We were the ones who didn't have to look too far for an excuse to get out of PE during our youth, we were sick most of the time growing up and when we weren't, we weren't able to keep up with peers at recess. It's hard to develop motivation for physical activity when you're always the one picked last for the team. Thus began the cycle of avoidance.
But even when we decide later on that we want to become more physically active, autistic (and other neurodiverse) people face additional barriers that are not well understood. Our processing issues get in the way. READ MORE
It would be very easy to draw a quick conclusion that the majority of autistic people are too lazy to exercise. We are often found playing video games or noodling around on our iPads. We were the ones who didn't have to look too far for an excuse to get out of PE during our youth, we were sick most of the time growing up and when we weren't, we weren't able to keep up with peers at recess. It's hard to develop motivation for physical activity when you're always the one picked last for the team. Thus began the cycle of avoidance.
But even when we decide later on that we want to become more physically active, autistic (and other neurodiverse) people face additional barriers that are not well understood. Our processing issues get in the way. READ MORE
ASAN Unveils Toolkit for Advocates on Health Care and the Transition to Adulthood
ASAN has prepared a comprehensive toolkit to empower people with disabilities, their families, and other disability advocates to help youth with disabilities manage their own health care as they transition to adulthood.
As ASAN found in our 2013 report, youth with intellectual and developmental disabilities face a variety of barriers to accessing and managing their health care when they reach adulthood. Youth may no longer have access to the same source of health coverage that they had before they turned 18. They may have difficulty finding adult-oriented health care providers who understand their health care and communication needs. And they may not get the supports they need in order to understand their health care options and make decisions for themselves. ASAN’s toolkit on health care and the transition to adulthood provides resources for advocacy both on an individual and a system-wide basis. READ MORE
ASAN has prepared a comprehensive toolkit to empower people with disabilities, their families, and other disability advocates to help youth with disabilities manage their own health care as they transition to adulthood.
As ASAN found in our 2013 report, youth with intellectual and developmental disabilities face a variety of barriers to accessing and managing their health care when they reach adulthood. Youth may no longer have access to the same source of health coverage that they had before they turned 18. They may have difficulty finding adult-oriented health care providers who understand their health care and communication needs. And they may not get the supports they need in order to understand their health care options and make decisions for themselves. ASAN’s toolkit on health care and the transition to adulthood provides resources for advocacy both on an individual and a system-wide basis. READ MORE
care and handling by Diary of a Mom
Three years ago when Brooke needed to have a couple of baby teeth pulled, we were told (and agreed) that the only way to do that would be in a hospital, under general anesthesia. That was what we did. Last month, we were told that she needed to have an adult tooth pulled. Her orthodontist referred us to her surgeon. This time, however, things were radically different. Thanks to myriad factors which I swear I’ll get into in detail in a full post tomorrow, we believed that she would be able to do this. We were right. As we left the dentist’s office just now, one tooth lighter, Brooke texted Luau. “I’ve been a rock star,” she wrote. “I am proud of me.”
I can’t tell you how proud I am of my girl, nor how grateful I am for the people who helped us to create the environment in which this was possible. Here’s the story of how that happened …READ MORE
Three years ago when Brooke needed to have a couple of baby teeth pulled, we were told (and agreed) that the only way to do that would be in a hospital, under general anesthesia. That was what we did. Last month, we were told that she needed to have an adult tooth pulled. Her orthodontist referred us to her surgeon. This time, however, things were radically different. Thanks to myriad factors which I swear I’ll get into in detail in a full post tomorrow, we believed that she would be able to do this. We were right. As we left the dentist’s office just now, one tooth lighter, Brooke texted Luau. “I’ve been a rock star,” she wrote. “I am proud of me.”
I can’t tell you how proud I am of my girl, nor how grateful I am for the people who helped us to create the environment in which this was possible. Here’s the story of how that happened …READ MORE
