Only if you have suffered from the disease can you understand the extent to which food takes over your life. Someone I love dearly struggles with Anorexia – a nasty disease.
The ways to an eating disorder are many. Aspies are some of the people particularly at risk for such behaviour. Sometimes the eating disorder is the only control we have over what can feel like a chaotic and confusing life. We are certainly not the only ones who struggle with things like Anorexia, Bulemia, Overfeeding, Extreme eating routines and so on. Once you are caught in that prison, it is difficult to get out and like Baird says in her poem, people around you may end up making it even more difficult to escape.
The caffinated autistic updated their post from December 2015 regarding Autism Speaks to make sure the data was updated. There isn’t any improvement in their ability to actually be there for the people they claim to represent. Links to the information are found on The caffinated autistic’s blog. Autism Speaks do not cease disappointing.
Update 4/4/17 – as of December 2015, Autism Speaks now has two autistic board members, Dr. Stephen Shore and Dr. Valarie Paradiz. In addition, their mission statement no longer includes the word “cure” . You can read more specifics here.
When a person thinks of the term “Autism Awareness” in the United States, it’s usually one organization that comes to mind – Autism Speaks. It is heralded by celebrities, politicians, nonprofit and for profit organizations alike. Many parents of autistic children enthusiastically applaud their “efforts”, even partaking in fundraising, despite not knowing much about what those efforts entail.
Ask an autistic person, however, and you might get quite a different picture of Autism Speaks.
The number one tenet of any activism among disability groups is “Nothing About Us Without Us”, yet Autism Speaks can’t even manage to meet this one basic qualification. They have never had an autistic member on their board. Their current board consists of parents, including one who founded SafeMinds, which has contributed to the anti vaccination movement, as well as another board member who used be a board member for Cure Autism Now. To view the full list, click here. To view a list of other leadership in their organization, click here.
The only autistic person high enough up in their leadership to be worth mentioning was John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s Syndrome and part of their science advisory board. He resigned his position in November 2013, a decision he spoke about on his blog.
Autism Speaks spends just 3% of the money they raise back into helping families and autistic people. This comes in various forms, and not all of it is aimed at actually helping autistic people. Some of it is aimed at communication devices for autistic children and teenagers, and this is of course a very good thing. Much of it is also aimed at providing ABA therapy for autistic people, which is a behavioral intervention that much of the autism community opposes, particularly autistic people who are now adults who were subjected to it as children. Some accounts of this are here, here, here and here……………..
Sometimes being Aspergers sucks royally. My brain has been in melt-down for months now. Thinking and writing feels like wresting my feet from mud. Coherency is optional.
I know why this situation has come about. It is one that cannot be changed but must be lived with until it resolves itself. That’s the thing with life. Sometimes we are in control and sometimes circumstances control us. As anyone knows who knows anything about Aspergers, predictability is incredibly good. When I have to go through longer periods of unpredictability, melt-down is inevitable.
This is one such period. Blogging has become impossible. I can tell my reviews and articles are impacted, and writing drags me further into the mud. I’m not giving up, but I am giving myself space to come back to some sense of control.
Photo from “World’s Worst Pollution Problems: The New Top six Toxic Threats: A Priority List for Remediation” (2015)
“The human race is just a chemical scum on a moderate-sized planet, orbiting around a very average star in the outer suburb of one among a hundred billion galaxies. We are so insignificant that I can’t believe the whole universe exists for our benefit. That would be like saying that you would disappear if I closed my eyes.” (Stephen Hawking from an interview with Ken Campbell on the 1995 show “Reality on the Rocks: Beyond Our Ken”)
Brainwashing is something that happens to all of us. Often we are brainwashed to the point of blindness. Letting go is immensely difficult. My religious beliefs, cultural beliefs and common-sense beliefs have all needed pruning. In the Mormon church members are taught that humans may one day become as gods, creating worlds of our own. Culture taught me that humans have a Right to nature. From common-sense lessons, I learned that humans were much more intelligent and complex than other living creatures. One after the other, these flawed and dangerous beliefs have been revised.
Letting go of the idea of my own importance was intimidating at first. I had to defy the advice of Mormon leaders to NOT seek outside sources. Ready access to information on the net made that possible for me. Today information is accessible to a degree I can barely comprehend. Some of it is garbage, but much information on the net is verifiable and valid. Learning Truth has been amazing, beautiful, freeing and mind-opening.
Now. Now I believe that I have no more or less right to exist than any other living creature. By life, I mean any collection of atoms that enables a creature to consume another. Everything from single-celled life to the collection of cells, bacteria and fungi that make up my body. My cells are no more significant than other cells that exist. Except to me, that is, and a very small circle of family and friends. Understanding that plants have their own form of communication and discoveries about other animals‘ helped me realize that intelligence, as humans define it, isn’t a valid definition for all life-forms. After all, we humans seem to happily destroys vital life-sources for short-term gains, and that seems pretty stupid to me.
Right now, in North Dakota, the US Government is deciding whether it will break another treaty with Native Americans. The Dakota Access Pipeline will trek across vital food and water sources. We shall see how corrupt the judge making the decision is. Wars (conflicts) about water are likely to become more common as clean water becomes scarcer. At times it feels as though the only reason countries, organizations or communities go war is short-term gain, yet long-term consequences for current life may be dire. Western culture pollutes to an unprecedented degree. Air-pollutants, water-pollutants, land-pollutants and light-pollutants are all a symbol of our consumer-addicted economies. Humans are committing species’ suicide and ecological murder. Most of us probably don’t even care. Empathy for future generations and other life-forms is sadly lacking in our evolutionary development. In more than one way, Hawking’s description of humans as self-important “chemical scum” seems fitting.
Finally, a frank conversation about disability and periods. My period arrived when I was about 12.5. It was an embarrassing day. Since then, I have wished it away. Slowly, that wish is coming true. During these 40 years of monthly bleeding, I have tried the traditional products (pads and tampons) but never alternative menstrual products (like menstrual cups/menskopp). I cannot use tampons and I would guess that I am not alone in that. Nor can I use silicone products and had no clue there were alternatives. Thankfully, crippledscholar has had experience with various menstrual products and brought the topic into the open. Like she says, there are considerations that people with disabilities have to think about that are irrelevant without disabilities. Maybe my last periods will be more comfortable than the previous ones have been.
Let’s Talk About Disability, Periods, and Alternative Menstrual Products
Posted by crippledscholar on July 8, 2016
There is so much I want to say about disability and menstruation. So much that I could never fit it into a single post. I have noticed that there is very little written about disability and menstruation generally and what little there is is most often not written by disabled people. As a result a lot of it is about control and often menstrual cessation in order to make the menstruating person more convenient for a care giver. This sometimes goes so far as sterilization of the disabled person.
The dearth of material on disability and menstruation from the disabled perspective likely has a number of influences that include the fact that menstruation is still unfortunately a taboo subject generally that people are embarrassed to talk about. Add to that the very idea of disability and sexuality is also still (somehow) widely denied. Which is, I suspect why so many nondisabled people feel so comfortable talking about period cessation as a reasonable solution to disabled people who have periods.
This focus on just stopping the whole business of menstruation is frustrating because it primarily marks the disabled body and its natural functions as too inconvenient. It also means that for those of us who do menstruate that we are left with disability specific information on how to deal with our periods.
It is the latter issue that I’m going to deal with now because the first issue while so important is just to big for me to handle right now.
I am going to talk about disability and the accessibility of alternative menstrual products.
Unfortunately, I am just one person with just one kind of disabled body and so nothing I say will have universal application. This is one of the reasons why we really need more disabled people to share their stories and experiences. If you have a different experience please share it in the comments or write your own blog post about it and share that in the comments.
Hopefully in spite of this I will have something useful to say or spark a conversation to get more voices heard because I really feel that it is essential to demystify and destigmatize not only menstruation and particularly disabled people menstruating.
For context (to see if what I say will translate well for you) I have left side hemiplegic cerebral palsy and am autistic. So most of what I have experience with is dealing with menstruation literally single handedly and the sensory aspects it entails.
I started menstruating when I was 11 and have primarily used pads as my go to feminine hygiene product. I found tampons difficult and uncomfortable for pretty much my entire childhood and teen years. I only started using them rarely when I was well into my twenties.
I have never found pads to be particularly comfortable and couldn’t manage to deal with anything other than the thinnest option. I’m still not a fan of tampons. I find the uncomfortable but sheer pragmatism has forced me to use them occasionally. I am always hyper aware of them the entire time that I do.
In the last decade or so alternatives to the standard and and tampon methods of dealing with menstruation have become more mainstream (though they have definitely existed longer than that).
Alternative period products are generally washable and reusable and are considered to be both more environmentally friendly and more cost effective.
The oldest alternative period product is probably the menstrual cup …………..
I am not a fan of Autism Speaks and their tactics. There is not enough autism and too much speak in their club. So much of their work goes toward demonizing autism and terrifying parents into supporting them and their “cure” theories. Really. Folks. Stop patronizing us.
“Remember to put the person first! It’s a “person suffering from allism” not “allistic person” no matter how many times they try and tell you otherwise. It’s disrespectful to allow them their own choice in how they’d like to be referred.” (Tone it Down Taupe)
Friends, I want to talk to you about autism awareness awareness. We are, I fear, on the verge of an autism awareness epidemic, a veritable tsunami of awareness. Once a relatively rare phenomenon, the ailment, which is most commonly characterized by non-autistic people engaging in public handwringing about autism and/or feeling inspired by those tragically touched by neurodevelopmental disorders, has become increasingly common over the past decade. Some speculate that, within the next few years, as many as 1 in 2 people could have an awareness of autism.
In theory, more people knowing more about autism spectrum disorder would be a good thing. Autistic people, like me, could certainly benefit from the general public having a greater understanding of what our lives are like, and maybe even some genuine acceptance of those lives in whatever form they take. Increased awareness would be an excellent first step toward those goals. But the kind of autism awareness that is currently celebrated in day (April 2) and month (the rest of April) form was never made for people like me. I’d argue that it was never really made with anyone on the spectrum in mind at all.
The most nefarious incarnation of autism awareness is the kind espoused by Autism Speaks, which treats autistic people as little more than props in its various campaigns. The prominent charity’s simple and dishearteningly effective message—autism is bad and it must be stopped—misrepresents a complex condition and identity as a sinister looming specter that can and should be cured. It reduces the people who have autism to damaged, voiceless zombies bringing suffering to everyone who loves them, when in fact we are disabled human beings who might require treatments and accommodations unique to our circumstances. And Autism Speaks’ ends might actually be worse than its means, given that so little of its budget goes toward helping autistic people and their families……………………
Often when I use the words “equal rights”, there is an assumption that I am going to say something negative about men. Granted, there are a few men out there I would like to rant and rage against, #Drumph being the most obvious one at this time. However, equal rights means equal rights: that whoever/whatever I choose to fight for gets to have the same rights I would accord, if I could, to any person I like. I have chosen to fight for equal rights for people and animals. I do that one post, one individual, one conversation, one mail at a time. A militant attitude towards any kind of life doesn’t work for me. My Aspie mind becomes confused at the rhetoric that often lacks logic and has a one-sided view of the world.
I might have been that militant some years ago. Aspies are probably more susceptible to being manipulated into that kind of thinking. At least I am. But once I confronted my own deep-held beliefs about many topics (yes, including religion), I discovered I had been wrong. Admitting to being wrong sucks royally. But once I understood the psychological processes involved, it somehow became easier. Now I know that most of my understanding, opinions and knowledge is flawed. I also know that is true for the rest of the world. So, I seek to inform myself. For each new understanding, I see that there is so much more I do not understand. I guess that is kind of a dream condition for my type of Aspie. Digging into information and understanding the human mind is a need for me. Understanding the human mind is my “interest”, insofar as Aspies have special “interests”.
Poverty is an area of the human condition I would like to see reduced, even if that means I must give up something. Cause that is what equal rights is all about. The have’s (whether it be power or wealth) must share with the have not’s. A thanks to “Max Waller” who shared this youtube video on his Twitter. One part of fighting against poverty means fighting consumerism.
Gone Wild has posted an article about some of the many baffling ways of thinking non-ASDs seem to do. I completely agree with her words. So many ways of thinking and doing things in the non-ASD world make no sense at all.
“More Mind Boggling Neurotypical Beliefs
I want to be frank about neurotypical beliefs that I find shocking. I attribute my reactions to having a “real world” factual and concrete Asperger brain, although I can’t say that every person diagnosed Asperger would share my reactions. We are individuals, with our own ways of seeing and interpreting the environment.
These strange beliefs have to do with death, revenge and punishment.
An jetliner vanishes over an ocean. Exhaustive searches take place long past the time interval that any passenger could survive under the best of conditions; the possibility is zero. Speculation goes on and on for months. Miracles are deemed possible: soon the airplane with everyone alive will materialize “out of the blue” due to supernatural intervention caused by prayer. The families cannot accept that their loved ones have died. They become angry if they don’t receive a body; they must have a body to prove that the person is dead, otherwise they can’t achieve “closure.”
I’m not indifferent to suffering; I’ve lost family members and it has taken years to reexamine my relationships – this process toward understanding will continue until I die. “Closure” is a strange idea.
What baffles me is the state of limbo in which dead people remain for an extended time, that is, in the mind of the survivors; as if the person is in limbo in a quantum state: is he or she dead or alive? Only Schrodinger’s cat knows. It’s as if the person doesn’t die until the wreckage is found and bodies are identified, despite the overwhelming evidence that all on board died weeks or months ago. These traditions and beliefs run deep. The “quantum dead” effect is simply strange.
A closely related belief is that “the remains” of a person contain an “essence” that can be recovered if the bones can be located and returned to descendants, or to a specific location. The act of placing the remains in a designated cemetery where “the person” can be visited, is believed to “honor” the dead and to confirm an event that happened decades before. This is an old tradition based in magic: bones are believed to possess contagious magical power. The Middle Ages were awash in the relics of saints, Kings, Queens and other powerful folk, and existing shrines are mobbed by pilgrims to this day. This tradition as deeply human, but I think it is healthy to accept that when the body dies, the person dies. What remains are memories.
What shocks me the most is that nations make a great display of “honoring” dead soldiers, but fail to honor living soldiers who have paid an enormous price in physical and mental trauma.
Any person who dies unexpectedly, due to an accident or a crime, immediately becomes the “best person who ever lived.” This story-making is repeated over and over again, and I think much of the blame goes to the media’s intent on ambushing the victim’s family just as they receive the tragic news.
Regardless of circumstance, according to family and friends, the dead person was a great humanitarian who loved the world, was kind, helpful, generous, and if religious, a dedicated member of the faith. Pretty remarkable life history for anyone, and in some cases attributable to expected social exaggeration, but by repetition these fictions become true in the minds of many. What if a long history of drug abuse, criminal activity, domestic abuse or a willingness to “con” family members emerges? The person remains a saint: is this denial, face-saving, shame? Does a social “law” exist that says only “good people” can be mourned (only good people count.) Why must people lie about loved ones?
As an Asperger, I believe that everyone counts; each human life ought to be acknowledged and absorbed into the pageant that is humanity.
Revenge and punishment = justice. This is a tough one; revenge is an impulse that can destroy a fair legal system, and needs to be recognized for what it is: magical thinking. The American system is highly variable, with laws, criminal prosecution and periods of incarceration in a “correctional institution” determined state by state. Other crime and punishment is controlled by the Federal courts. It is not these idiosyncratic systems that I can address.
Revenge as a driver of human behavior is familiar, and is a major cause of wars large and small, and drives conflict between ethnic, cultural and religious groups; between families, businesses etc. The resolution of conflict in many cultures was/is a matter of payment in kind: your uncle looses control and kills a man he suspects of cheating him. That man’s family vows revenge – kill the uncle! But an arrangement is made to “pay for” the death. This may seem cold or unfair to the victim, but the victim is already dead. Nothing will bring him back. Why should the living be dragged into an endless cycle of violence?”
This post has been moved from my book-blog and edited.
This has been a summer and autumn of death. Four people I cared about have died and their ages have been from nine to eighty-five. These past couple of days there have been three attacks: Paris, Beirut and Baghdad. Every year about 55 million people die per year. Yet very few of these deaths are deaths I care or worry about because I do not know anything about the people behind these numbers. But some people’s deaths do affect me.
In Norway, when a person dies, no matter how that death occurred, those who are left behind are expected to deal with the death stoically. Nary a tear is to be shed publicly and if you do shed one it is to be discreetly. Perhaps this has something to do with the distance we have created between ourselves and dead people here in the West. Or maybe not.
The first death I remember was father’s father. I was around seven years old. Back then children were not allowed to attend funerals. The reasoning behind this was to protect us children (I think). Personally, I thought my grand-father was wonderful. He played the harmonica, smoked a pipe and loved his grand-children to bits. I knew he did. But I cannot remember if I missed him.
My next death came with the death of a friend’s father. The only reason I remember that death is because I used my friend’s grief in a fit of anger. My mom made me apologize, something I salute her for.
Some time passed and then a grand-aunt (something I have myself become) died. For some strange reason she loved me a whole lot. I thought she was really nice to let me practice on her piano. Other than that, she was my grandmother’s old sister. But I still felt a bit odd about her disappearing from my life.
Harder to deal with was when a friend in high school died. He was a really nice kid who happened to contract leukemia. We weren’t close at all but I was still weirded out about a person my own age dying. It just did not seem possible that a person that young should die.
I had a spontaneous abortion (one that I knew about). This was to be our first child, but that was not to be. The loss of that expectation hit me hard. My husband was not having fun either.
When an ex-uncle and the rest of my grand-parents died I felt conflicted. When it came to some of them my main feeling was relief and almost joy along with a bit of guilt. With the others there was more a sense of “this was how life was supposed to be” along with some sadness. But my family had moved around a lot and I struggle with social relationships so grief as I see others go through it wasn’t really what I felt.
Then came my cousin. He had not yet turned 40. One day he just died unexpectedly. Both lungs had a clot and that was that. I had really loved that cousin. As a child I had been infatuated with him. Once again I was weirded out, confused even. Life became unpredictable.
Suicides also became part of my death experiences. For some reason society (that diffuse unknowable entity) frowns upon self-killing. At least we, here in Europe, do. My personal feeling is that this only places an additional burden upon shoulders that are already bowed down by grief. To me, the suicides made sense. With what these people had to bear emotionally I could understand their need to stop that emotional pain. I was still sad to see them die, but I could understand their choice.
A friend of mine died. She was about my age (49) and it was not expected. She and her husband had recently had a baby. Behind were left children (one a recent baby) and a husband who missed that friend dreadfully.
At some point I realized that people were dying by the millions every year through war and hunger. Millions and millions and millions. Even divided into days the numbers are staggering. Then we add various forms of killing – be it through oneself or others – disease and age to that number and we are looking at .
Death fascinates me. Yes, there is grief when I know the person or the person who loved them. Along with the grief I have an interest in how we treat death and the dead. I enjoy talking about death, but most people seem to hate talking about the most normal thing we humans do. Only birth equals it. Inside my head it only seems logical that we talk about such an important event more. Trying to understand the taboos surrounding natural subjects is challenging to the point of impossibility.
This post from October 2014 has been moved from my book-blog to Identities.
Saturday I had my first major melt-down in a long time. I was at a family gathering. My family is loud. So am I. All of that loudness over a long time becomes confusing. I cannot help but hear everything that is going on, and concentrating on one conversation takes a lot out of me. Add to that strong emotions from a few of the participants and visual stimulus and I was teetering. The thing that pushed me over the edge was that I had been overly optimistic about the time my medication would last.
All of a sudden I knew I had to get out of there. If I didn’t I had no idea what would happen. Major melt-downs are like that for me. Thankfully, my husband saw that all was not as it should be and we got the crew going. Driving home I had to keep my eyes shut tight, put my fingers in my ears to lessen the volume and bend forward. Then I breathed as well as I could and kept on trying to get myself back on the edge. When we got home, I took my medication and went into my room, wrapped myself in our duvet and read a book.
That was when it hit me. I had kind of guessed that this was my method of handling the world when I was younger. But the feeling of desperation and pain that I felt Saturday evening and the relief it was to hide brought back memories of childhood.
My parents had no idea I am Asperger. Whenever I tried to hide at parties (i.e. hide behind a magazine or book) they thought I was being rude or pouting. At home I had to get away at times and hid in my bed all covered up and behind a book. My family thought I was out of sorts and would try to cheer me up. The thought was kind enough but just made matters worse. I was often accused of pouting. Looking at it from an objective point of view, I can see how it would seem that way. But pouting was the last thing I was doing.
I hate being dependent on my medication, but I dislike melt-downs even more. I love parties and noise. But once my level of stimulus tolerance is reached, I need to leave or find a quiet place. Being reminded of how long my strategy has been used and how comforting it is to me was interesting and educational. I wish I could have avoided my melt-down on Saturday. At the same time I am thankful for the trip down memory lane and all that it taught me.