Wellness and Healing

ALSO: I just showed this post to my roommate, who is an MD at a clinic that specializes in care for the LGBT community in the Baltimore area. I asked her  whether hormones were responsible for the difference in the “male/female” symptom arrays. I asked how that would apply to her trans patients (which, she treats a LOT of trans patients). She said, basically, that the longer you’ve taken testosterone the more likely you are to get the intense chest pressure and the arm pain, versus the upper back pressure and shortness of breath.

Hi there,

Yes, I do believe it affects a person’s response. I did find a website that shares a personal experience: here’s an excerpt:

Caffeine affects us all in different ways. Being autistic/Asperger’s does not alter this fact. Some people with autism are affected much less, by caffeine, than others. As autism and ADHD are strongly linked, the effects of caffeine could change dependant on whether you have autism with or without ADHD. This aside, I strongly believe that most people with autism are hypersensitive to caffeine (and any drugs, including alcohol). I certainly fall into this category.

They even listed how caffeine has affected them:

These are few of the affects I felt, but I have experienced many more at other times which include:

Being agitated

Increased anxiety

Jittery

Not being able to sleep

Being addicted to it. So I would need it to wake up properly and function throughout the day.

Not having a regular caffeine fix would make me: overly tired, grumpy, depressed and at times even angry.

Personally, coffee and caffeine doesn’t really do much to me. But I can understand why and how it affects people.

I’ll link the article below so you can read through it if you want.

I found an article from ADDitude that goes into more detail on how it affects ADHD:

The effects of caffeine consumption on ADHD remain largely anecdotal. The stimulant calms some people, while increasing anxiety in others. However, many parents and adults with ADHD, (and some studies) report light to moderate caffeine use as a way to help boost focus and concentration.

Tuckman, however, notes that patients taking stimulant medication for ADHD tend to crave caffeine less. “The amount of caffeine you’d need to consume to affect ADHD would probably cause agitation,” said Larry Silver, M.D.6, clinical professor of psychiatry at Georgetown Medical Center in Washington, D.C., and director of training in child and adolescent psychiatry at Georgetown University School of Medicine. “I don’t recommend drinking caffeinated beverages [or taking caffeine-containing pills] as a way to treat ADHD.”

The article will be below in case you’d like to read through that too.

I found an article about autism and boundaries. Here are the key points in the article:

One of autism's defining features is social deficits and impairments which can lead to people with autism not understanding boundaries.

Lack of understanding of boundaries leads to many of the social struggles people with autism have.

Helping people with autism understand boundaries is critical.

I will leave the link below so you can read the article. I hope many of you find this helpful.

Autism

Yes, I highly agree with your dad's view.

The autism criteria isn't based on the many ways autism presents. It's based on how we present when suffering. Or how much we bother allistics.

"Narrowed interests"? You mean the thing that allistics would just be encouraged to go to university to pursue because it's a "passion"? But when Autistics do it, it's a "criteria".

Repetitive movements? You mean, fidgeting? No, we're Autistic and we do it enough to bother allistics, so it's criteria.

Inability to socialise? You mean, questioning the bizarre rules and asking for accommodation for people to meet us at our level? Oh, hell no. Criteria!!

But any of the other things that Autistics experience? Nah. Anyone can experience those.

“It’s based on how we present when suffering”

This is not true. The diagnostic criteria is based on studies of autistic people. I will admit that the studies were heavily focused on little white boys, which means that the original criteria was also based on little white boys.

There have been several updates to the DSM since autism was first introduced as a diagnosis, the most recent being the combination of autistic disorder, PDD-NOS, and Asperger’s syndrome into one spectrum disorder.

The symptoms that are listed in the DSM-V are not “traits that bother allistics”. In order to even be diagnosed as autistic you must be clinically impaired by your symptoms.

If you don’t have autism symptoms when you’re not miserable or in the midst of trauma, you’re not autistic. Trauma can present like autism, which is why testing for other possible disorders is necessary before diagnosis.

“‘Narrowed interests’? You mean the thing that allistics would just be encouraged to go to university to pursue because it's a ‘passion’? But when Autistics do it, it's a ‘criteria’.”

Narrowed interests as defined in autism must be more intense/focused than allistic people, otherwise it’s not a narrowed interest.

I literally cannot go for more than 10-15 minutes without talking about my special interest. That is textbook abnormal.

“Repetitive movements? You mean, fidgeting? No, we're Autistic and we do it enough to bother allistics, so it's criteria.”

Again, it has to cause clinically significant impairment for you in order for it to be considered an actual symptom.

My repetitive behaviors consistently cause me physical harm. I get bruises, muscle cramps, and headaches from accidentally hitting myself; my fingertips are shredded; my skin has small scars and scabs all over it due to dermatillomania.

“Inability to socialise? You mean, questioning the bizarre rules and asking for accommodation for people to meet us at our level? Oh, hell no. Criteria!!”

No, inability to socialize quite literally means inability to socialize. The criteria is “persistent deficits in social communication and social interaction across multiple contexts”, not “tee-hee my communication style is different but it doesn’t impact me at all”.

The fact is that even with accommodations, autistic people will still be autistic and will still have those clinically significant autistic traits (yes, even if you’re low support needs or level 1).

Whilst I do feel the criteria is very ableist and problematic, I have to admit that, as @mischiefmanifold stated, it is observed and therefore a reason. It is wrong of me to pronounce it all as wrong based on my level and needs. My late diagnosis has given me tinted glasses, and I apologise for painting this topic with such a broad stroke.

Thank you to @mischiefmanifold for giving me a proverbial kick to remember my place. I genuinely mean that. I will remember this before giving such broad statements that seem to be solid fact.

Over the years, Marsha Farmer had learned what to look for. As she drove the back roads of rural Alabama, she kept an eye out for dilapidated homes and trailers with wheelchair ramps. Some days, she’d ride the one-car ferry across the river to Lower Peach Tree and other secluded hamlets where a few houses lacked running water and bare soil was visible beneath the floorboards. Other times, she’d scan church prayer lists for the names of families with ailing members.

Farmer was selling hospice, which, strictly speaking, is for the dying. To qualify, patients must agree to forgo curative care and be certified by doctors as having less than six months to live. But at AseraCare, a national chain where Farmer worked, she solicited recruits regardless of whether they were near death. She canvassed birthday parties at housing projects and went door to door promoting the program to loggers and textile workers. She sent colleagues to cadge rides on the Meals on Wheels van or to chat up veterans at the American Legion bar. “We’d find run-down places where people were more on the poverty line,” she told me. “You’re looking for uneducated people, if you will, because you’re able to provide something to them and meet a need.”

Farmer, who has doe eyes and a nonchalant smile, often wore scrubs on her sales routes, despite not having a medical background. That way, she said, “I would automatically be seen as a help.” She tried not to mention death in her opening pitch, or even hospice if she could avoid it. Instead, she described an amazing government benefit that offered medications, nursing visits, nutritional supplements, and light housekeeping—all for free. “Why not try us just for a few days?” she’d ask families, glancing down at her watch as she’d been trained to do, to pressure them into a quick decision.

Once a prospective patient expressed interest, a nurse would assess whether any of the person’s conditions fit—or could be made to fit—a fatal prognosis. The Black Belt, a swath of the Deep South that includes parts of Alabama, has some of the highest rates of heart disease, diabetes, and emphysema in the country. On paper, Farmer knew, it was possible to finesse chronic symptoms, like shortness of breath, into proof of terminal decline.

When Farmer started out in the hospice business, in 2002, it felt less like a sales gig than like a calling. At thirty, she’d become a “community educator,” or marketer, at Hospice South, a regional chain that had an office in her home town, Monroeville, Alabama. Monroeville was the kind of place where, if someone went into hospice, word got around and people sent baked goods. She often asked patients to write cards or make tape recordings for milestones—birthdays, anniversaries, weddings—that they might not live to see. She became an employee of the month and, within a year, was promoted to executive director of the branch, training a staff of her own to evangelize for end-of-life care.

Things began to change in 2004, when Hospice South was bought by Beverly Enterprises, the second-largest nursing-home chain in the country, and got folded into one of its subsidiaries, AseraCare. Not long before the sale, Beverly had agreed to pay a five-million-dollar criminal fine and a hundred-and-seventy-five-million-dollar civil settlement after being accused of Medicare fraud. Its stock value had slumped, and Beverly’s C.E.O. had decided that expanding its empire of hospices would help the company attract steadier revenue in “high-growth, high-margin areas of healthcare services.” Less than two years later, as part of a wave of consolidations in the long-term-care industry, Beverly was sold to a private-equity firm, which rebranded it as Golden Living.

It might be counterintuitive to run an enterprise that is wholly dependent on clients who aren’t long for this world, but companies in the hospice business can expect some of the biggest returns for the least amount of effort of any sector in American health care. Medicare pays providers a set rate per patient per day, regardless of how much help they deliver. Since most hospice care takes place at home and nurses aren’t required to visit more than twice a month, it’s not difficult to keep overhead low and to outsource the bulk of the labor to unpaid family members—assuming that willing family members are at hand.

Up to a point, the way Medicare has designed the hospice benefit rewards providers for recruiting patients who aren’t imminently dying. Long hospice stays translate into larger margins, and stable patients require fewer expensive medications and supplies than those in the final throes of illness. Although two doctors must initially certify that a patient is terminally ill, she can be recertified as such again and again.