Tuesday, September 30, 2014

"Doesn't Everyone have a Little Autism In them?" Wounding "Well Meaning" Statements (Ableism and The Neurodiverse Movement explained.)

The problem with well meaning statements is that they come from a place of genuine care and attempts at understanding, so it is tougher to address them. Often, in person, I don't have the words to respond because people are often trying to show we are similar and can relate. It is often meant to be sweet however, often, these statements are also condescending. Without realizing it, statements like the following trivialize specific journeys in life. I find it easier to respond in writing so the following are other ways to look at how some of these well meaning statements comes across.  
1. "Doesn't Everyone Have a Little Autism In Them?"
Perhaps that is true in the sense that everyone has traits that could be translated as such, but in every other way its not true. It minimizes both the struggle and beauty of Neurodiverse traits. It's not true that everyone is a little Autistic. You either have the different brain wiring on a MRI and different areas light up when you experience sensory overload or you don’t. Even if there is “high” or “low” functioning it is still a similar brain wiring…which translates into purely autistic. No matter what. In some situations a presumably high functioning Autistic could be very low and in some situations a presumably low functioning autistic could be high in their certain fields…so it renders it simply autistic. (See THIS post by Musings of An Aspie for more.) In other mental differences, to be OCD truly, one must have both ritual and anxiety and compulsion and obsession…unless it’s OCD anxiety which is different and yes, a lot of people can have OCD anxiety without actual OCD. As for Bipolar, we do all have opposing sides and paradoxes of being deeply down or up at some stages in our life, but we can’t be a little Bipolar…you either are or are not. Again, the brain wiring is different. You can be a paradox or have similar attributes at a time but it is very different from BEING Bipolar.

Anyone who has these ways of being may have a tough time hearing statements like the above because it hurts. It is well meaning but it minimizes the struggle and beauty of differences. It’s kind of like saying” Everyone has a little Hispanic/ African/ German in them.” or "Everyone is a little blind in their sight." Um no…Some people have 20/20 vision. We don’t give these statements with physical differences yet we do it with mental differences? These Neurodiverse traits take a lot of work to discover, find validation in, and adjust to. It is invalidating to the journey and hard work of these people to say that "everyone" also is like this. It would be rude to say this to someone who is blind or of a different race or  someone who is sharing their life path of struggles and beauty, to minimize it by saying "all" of us are like that. It disregards the specific wiring, or essence of that person.
2.) "Maybe if Autistics stopped talking about their Autism/ Stopped writing articles/ Or sending me articles on how to treat them, I would just treat them normally the way they would like."

Let's get this myth out of the way first...we actually do not wanted to be treated normally. There is a difference between being treated with understanding and dignity and being treated like every other normally wired person. We are NOT wired normally so there are exceptions to our treatment. This is true in the medical world so it is going to also be true in the social world. We DO want to be treated with the SAME respect regarding our gifts and weaknesses that normal people do but this does not translate into being treated "normally." In my experience "normally" means not being forced into experiencing some sensory torture or having others be considerate about the fact that eye contact feels painful (see THIS post.) We don't need more ignorance.

Ableism and Neurodiversity (Click here for a brief explanation and roots of the Neurodiverse movement)  are relatively new words and the fight for existence and fight against Ableism is a relatively new movement. (Click HERE for a brief guide into the rhetoric of Ableism.) Like the Civil Rights Movement we need people to speak up for their own differences and need for respect. Martin Luther King was often despised for speaking out but he was crucial to the movement, along with many others who spread his name, referenced his speeches and pointed to the many injustices based on race. In the Feminist movement, words like "Patriarchy" were unheard of prior to the sixties and seventies. Now it is common knowledge and accepted into our society. Ableism is now on the forefront and it takes the people who belong to the Neurodiverse groups to spread the word. If it doesn't come from us, it is often skewed. Professionals are often well meaning but do not understand all the nuances in our brain. Since we live in our brain, we can probably explain more accurately than someone who only studies us. When we have the time to get out the words this can be effective. Usually written word is better for us, thus all the articles and references. It is easier for us to send out trusted sources or our own words and hope something sinks in than to explain it in person, which an NT would probably prefer. In person is always tougher because of distractions, grasping for words and sensory overload.

It has been found that the opposite of love is not hate but Apathy. Autistics are often met with apathy. In fact, anyone who is Nuerodiverse is often met with Apathy because our struggles in this particular culture are not seen, nor unfortunately, is most of our beauty. Ableism is often from apathy. Most people do not even know what Ableism is. I didn't until very recently. That is sad. To quote Lydia from Autistic Hoya "Our fight is less against willful hate and more against the easy ignorance cloaked in the privilege of never having to live a disabled experience -- the privilege of never being guilted and shamed into going to an event that you lost the spoons for but had requested an interpreter for beforehand -- the privilege of never having to decide days in advance whether you will go to an event or not -- the privilege of never having to wonder whether you'll be able to access the handouts, presentation slides, or speech of the presenter -- the privilege of not worrying whether other attendees' perfumed products will induce an allergic reaction, meltdown, or physical illness -- the privilege of not sitting on edge in case something triggers a seizure -- the privilege of not thinking about whether something will surprise you by triggering a panic, anxiety, or PTSD attack -- the privilege of not having to think about whether you can even get into the ... building -- the privilege of being able to go to any event you like, anywhere, with little difficulty or inconvenience except perhaps finding parking --."

3.) Phrases that are often said to Autistics that are rude but often born out of ignorance and not malice. 

 Ignorance is a huge travesty that is easily remedied. If you are reading this and the links then you are no longer ignorant of some of these issues, thus (hopefully) making you a more understanding, compassionate person and starting you on the path to larger minority group issues. Lydia covers this better than I could and while I may have a few different approaches to a few of her points, this post covers most of it aptly: http://www.autistichoya.com/2012/02/15-things-you-should-never-say-to.html
My point in giving these well meaning statements a second thought is not to create shame in those who have said these things. In fact, I have been guilty of a few of these phrases once upon a time. But with education and a little enlightenment we can stop saying things that wound and instead start speaking each other's language. I really believe most of these things need to come to light to begin to translate different experiences of this world. This is the time of the Ableist movement. All Autistics and other Nuerodiverse people are finally being able to share their OWN experiences in their OWN words. There is immense freedom in that. We are finally bringing to light all the experiences that have (with good intentions) caused immense damage.

Many people, prior to the Civil Rights movement, thought that slavery was the accepted norm. Many people were enslaved because of "good intentions" and not thinking outside the cultural box of conformity. Now most of us would never even think that way anymore, but it took many people speaking up, many people looking foolish, and many of those who were discriminated against to speak up in the midst of disdain, pain and prejudice to create change that is still happening.  

The conversation needs to change. Luckily, steps are being taken to change it- for example The Social Model of Disability (CLICK HERE for more.) We need to build each other up and start speaking each other's language. Autistics often know how to speak NT ( normal people) because we have to mask, conform and be considered somewhat normal just to survive. Yet, many Normal people conclude that we are asking them to understand us but we are not putting in the effort. Nothing could be further from the truth. It is time create a better conversation without inflicting as many wounds.
*Post Edit: Josie wrote, on another blog, a statement which I feels helps this post immensely: "When someone is both an advocate and a self-advocate as well as an activist for something personally affecting, the line becomes blurred. You are advocating and working for things to be different for other people but also for yourself. It might be easier for other people [see those without a disability] if individuals did not engage in self-advocacy or did not engage in activist, awareness, or inclusion education activities which revealed that they, themselves, are a part of the population often excluded...One of the more effective ways to get across awareness and education is to make others understand that these are individuals, not one dimensional poster people. But that can be troublesome. I mean that can bother another person, knowing how much their willful ignorance, their indifference, their exclusion absolutely hurts and negatively affects individual lives. " She is right. We can't stop advocating simply because we are a part of the populous group affected. Change needs to happen and we need to know that indifference hurts.

Tuesday, August 26, 2014

The Rhetoric of Ableism dating back to Aristotle, Autistics Don't need Your Awareness and Other excellent Autism Links Written By Autistics for greater Autism Understanding, Autism Advocacy, Autistic Communication and Ableist Behaviours Regarding Autism

The following are some fantastic links to explore regarding Autism, written by those who have experience in this way of Being. With each link (click and it will open in a new window to read at your leisure) I will post a brief highlight from the article. I have emailed these links to the Autism Societies around my home because I believe they are THAT informative and important.

"...We feel misunderstood because nonautistic people keep telling our stories, without asking us for our input. We feel misunderstood because nonautistic people make assumptions about what it’s like to be autistic and then present them as fact. We feel misunderstood because, like the adult in the video, people are talking to us and at us and about us but they’re not listening. I don’t need this kind of awareness. And I certainly don’t need to be tolerated. I need acceptance and I need for the voices of autistic people to be the ones speaking about autism..."

*** http://downwitdat.blogspot.ca/2013/07/r-evolution.html
"...In my nurse world, we used to get a lot of what we then called "severe autistics" who were brought to hospital due to aggression.  They were quickly medicated, restrained, controlled.  No one stopped to ask the cause of the aggressive episode that precipitated their hospital visit, rather it was just accepted as something that happened.  It was "to be expected".  That was autism when I started my career.  Acting out, feelings of complete sensory overwhelm and overload, these don't seem foreign to me any more.  Through the tireless efforts of self advocates and the extended autism community; these behaviours now have explanations and many, including myself --- through the years, as I gained experience --- have acquired further insight.
Quite frankly, I feel a little this way after a while if I don't pace myself.  If I don't take vacation, if I don't stagger outings, if I don't employ my coping mechanisms, I end up feeling like I am covered in post-it-notes.  I become swamped by psychic and emotional clutter that is inevitably left over from an average day at the office.  Certain clothes hurt.  Sounds grate, smells gag.  I don't have autism.  But I can relate, even if only in a miniscule way.  That had to be learned.  Common ground had to be found and the rhetoric of "devoid of meaningful thought" had to be overcome.  But it did.  I did... and was completely horrified at how I had viewed my fellow humans."

She argues that "Disease, deformity, and physical features different from those of the majority were linked with evil and sin, and so it is not surprising to find these alleged imperfections attached in artistic representations to historical, legendary, and contemporary figures who were viewed as ignoble or evil."18 Mellinkoff maintains that this artistic tradition was not particular to the period on which she focuses, tracing "an amazingly consistent pattern of thought [that] has persisted in Western society, from at least as early as ancient Greece into our own time."19
Using physical deviance to render evil visible saturates the Western artistic”  
”Confronting ableism as visual, ideological, and epistemic problems does not require us to set aside efforts to change the material order of society—such as working to provide access to public spaces—but it does empower disability literature, art, slogans, and protests as crucial to the effort to change what disability means. If we locate the problem in disability, then the ableist absolves his or her responsibility for discrimination and may not even recognize its presence. If we locate the problem in ableism, then the ableist must question her or his orientation. The critic's task is to make ableism so apparent and irredeemable that one cannot practice it without incurring social castigation. This requires substantial vigilance, for ableist thinking pervades the culture. For example, as I write this, I am tempted to use medical metaphors to explain the task and script something like "we cannot simply excise the tumor of ableism and heal the culture, for it has metastasized and infiltrated every organ of society." Yet this metaphor relies on an ableist perspective that motivates with the fear of death and turns to medical solutions to repair a body in decay. Using it, I would endorse and perpetuate ableist rhetoric, just as I would by using deafness as a metaphor for obstinacy ("Marie was deaf to their pleas for bread") or blindness to convey ignorance ("George turned a blind eye to global warming"). The pervasiveness of these and similar metaphors, like the cultural ubiquity of using images of disabled bodies to inspire pity, suggest the scale of the work ahead, and the ease with which one can resort to using them warns of the need for critical evaluation of one's own rhetoric. Yet the task can be accomplished. Just as feminists have changed Western culture by naming and promoting recognition of sexism, the glass ceiling, and patriarchy—admittedly a work in progress, yet also one that can celebrate remarkable achievements—we can reform ableist culture by using rhetoric to craft awareness and political action.”


..."How can you help an advocate and a self-advocate?  First, listen to them. Their concerns are valid and ignoring them and explaining that it is not that bad or the problem does not exist does not help people.  It makes the situation worse. Second, help a self-advocate understand their rights and responsibilities.  Self-advocacy is about empowerment and the more knowledge a person has about the problem, the better prepared they are in finding a solution. Third, help with stress management.  Advocating for yourself and others can take a heavy toll on you, mentally, emotionally, and physically.  Self-advocates need support and understanding and so do advocates."

..."Many years ago, I thought that any conversation about autism was a good thing.  I thought that the  more people who knew about autism, the better and easier it would make my life and my son's life.  You see, we are both Autistic and it's not always been an easy road when faced with the ignorance and judgments of other people.  So, seeing people celebrating Autism Awareness in April seemed like a "Really Good Thing".  
I slowly came to an understanding and appreciation of the huge difference between autism "awareness" and autism acceptance.  Awareness means that the rhetoric surrounding autism is dominated by people who are NOT Autistic.   Parents, professionals, even siblings.  Acceptance means that  you don't just ask for our input but you recognize that we are going to lead the conversation. Awareness means that there is going to be a lot of misinformation.  Because the people creating "awareness" do not have the lived experience of being Autistic.  Often, they don't even consult with us when talking about us.   Acceptance means  respecting diversity, valuing our humanity and recognizing and appreciating our place in the community and as experts on the Autistic life experience..." 

..."For that to happen, autistic individuals–including autistic children–need to be allowed to communicate a broad range of messages in the ways that are natural for them. Forcing a child to make eye contact or to stop flapping is the equivalent of forcing them to speak a foreign language. It’s telling them that if they want to use behavior to communicate more than distress, they’ll have to speak another language because theirs is substandard and the people around them can’t be bothered to learn it.
“Behavior is communication” has to apply to more than just a small subset of behaviors or it’s no better than “quiet hands” masquerading as acceptance."
.."How do we do that then? How to we change thousands of years of underlying ableist metaphors?

One, we have to self-reflect, examine and then change ourselves.  How do we really feel about people with intellectual disabilities?  About our kids with developmental delays?  Do we see them as broken?  Not quite right?  Lesser?  A challenge?  (To who?  To you?) It's only going to go downhill from here? How about the other way:  are they somehow superior to your other children?  Blessed with preternatural powers?  Is that extra chromosome made of anything other than genetic material?  Do you see those with Down syndrome as anything other than an equal, than human?
Then you too need to enter rehab, my friend.  "

  • We often have atypical symptoms and atypical reactions to medications
  • We often have difficulty describing our pain, symptoms or illness in a way that doctors understand
  • Many of us have had bad experiences with the medical system because of communication barriers or the way we experience our bodies
  • Sensory sensitivities, communication barriers and bad past experiences can cause us to avoid seeking out medical care when we need it."
  • ***
..."Unfortunately, it’s not about what I want. Social interaction has a real physical cost for autistic people. If I don’t listen to the voice of caution in my head and limit my interactions, my body will eventually take over and limit them for me.
When I’m in a situation where I feel comfortable, I can handle longer interactions. If I have to deal with unstructured activities, unfamiliar places, new people, rapid shifts in conversation partners or topics, or any of a long list of other things I find challenging, I’ll hit my limit sooner. An hour might be all I can deal with before I start feeling a strong need to escape.Since being diagnosed with Asperger’s, I’m getting better at “reading” myself. The anxiety, the need to escape, the withdrawal that precedes the uncontrollable shaking–these are not things I need to be cured of. They are signs that I need to take care–yellow lights to be heeded–and I’m learning to listen to them..."
http://aspergersgirls.wordpress.com/2014/08/20/bipolar-or-aspergers/..."For me, there are some distinct differences between bipolar and ASD, the primary being that I can predict, analyze, and understand my emotional states. I am aware of how I feel, not some of the time, but all the time. I can watch myself get happy, and I can step back and analyze the direct reason, and even theorize when the happiness will end. My behavior is not unpredictable. In retrospect, after I experience what might be seen as a ‘high’ or a ‘low,’ I can always find a trigger; sometimes the trigger is as simple as something I ate or someone who showed up at my door. In addition, much of my feelings of frustration, despondence, and discouragement are directly related to my executive functioning ability: the way in which my brain organizes information or doesn’t organize information. My executive functioning challenges can result in an inability to perform simple daily tasks, such as showering, dressing, errands, phone calls, or cooking. My lack of being able to perform simple tasks will cause sadness and disappointment, feelings that can easily spiral into a form of depression—a depression with an exact cause, other than biological.
http://ollibean.com/2013/01/05/autistic-autism/..."Pain comes in different ways, to all people. This is not autism, this is life. Seizures are bad, but they are not autism. Motor coordination is not autism either. Many people are, or will be, incontinent. This is not autism. This could be anything. Some autistics have meltdowns and there is always a reason. Outburst is not autism. Anyone can have one.How can a parent say that a child cannot have a coherent thought if the parent can’t understand the difference between communication and speech? Some people can experience the parts of autism that can be sometimes painful and uncomfortable but this is not all autism is. Finding better services and solutions for the discomfort is a good goal that we all support. Finding a cure for epilepsy is dream and a goal I support. I am Autistic. I cannot eat by myself a lot of the time. I self-advocate and I am happy." - See more at: http://ollibean.com/2013/01/05/autistic-autism/#sthash.3keuBR5T.dpuf

..."(It’s not just the association and pressure of shame, because when ever an autistic person gets autistically excited about something, there will be people there to shame and bully them, and some of us will internalize that shame and lock away our obsessions and believe the bullies and let them take away this unique, untranslatable joy and turn it into something dirty and battered.)It’s not any of that. Those are all things neurotypicals can understand and process. This goes beyond that. It’s not anything recognized on the continuum of “normal”. It’s that the experience is so rich. It’s textured, vibrant, and layered. It exudes joy. It is a hug machine for my brain. It makes my heart pump faster and my mouth twitch back into a smile every few minutes. I feel like I’m sparkling. Every inch of me is totally engaged in and powered up by the obsession. Things are clear. It is beautiful. It is perfect. I flap a lot when I think about Glee or when I finish a sudoku puzzle. I make funny little sounds. I spin. I rock. I laugh. I am happy. Being autistic, to me, means a lot of different things, but one of the best things is that I can be so happy, so enraptured about things no one else understands and so wrapped up in my own joy that, not only does it not matter that no one else shares it, but it can become contagious. This is the part about autism I can never explain. This is the part I never want to lose. Without this part autism is not worth havingNeurotypical people pity autistics. I pity neurotypicals..."

(Personal Note: I do not believe in pitying anyone. I do not like being an object of pity nor do I feel that Neurotypicals would enjoy that either...However, I DO get where the author is going, even if the word choice may not be my preference. There are some experiences I lose out on because I am Autistic and there are some experiences Nuerotypicals lose out on because they are Nuerotypical.)
..."This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.
Therefore, when parents say, I wish my child did not have autism,
what they're really saying is, I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.
Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.
Autism is not an impenetrable wall
You try to relate to your autistic child, and the child doesn't respond. He doesn't see you; you can't reach her; there's no getting through. That's the hardest thing to deal with, isn't it? The only thing is, it isn't true.
Look at it again: You try to relate as parent to child, using your own understanding of normal children, your own feelings about parenthood, your own experiences and intuitions about relationships. And the child doesn't respond in any way you can recognize as being part of that system."

..."To the parents of Autistic children: We need you.
Sometimes in public discourse, Autistic adults and non-Autistic parents disagree over very important issues that affect each of us personally. Sometimes this disagreement is spectacularly explosive. But there is no way for the autism and Autistic communities to move forward without creating some type of group cohesiveness. Yes, that means that we will have to enter into painful dialogue and discourse, and yes, that means we will have to accept the validity and legitimacy of the ideas and feelings of people with whom we may disagree. It does not mean that we have to set aside all of our differences, because that would make us self-deceivers. But it does mean that we have an obligation to each other and to ourselves to recognize what Dr. Martin Luther King Jr. called "inescapable mutuality."

..."Hugs can feel suffocating and scary. I  may not be able to read nonverbal cues well enough to know when, or how long a hug might occur, thus making physical contact seem unpredictable.  Light touch is often aggravating.  Deep pressure may work better than light brushes. (they make my skin crawl just thinking about it) One of my sons enjoy being squished up in a blanket.  This might be a good alternative to hugs.  Trust is important and trying to force physical contact in one way to be sure I will not trust you.  Let me cue you when I am ready and be gentle.  Provoking anxiety will only make me  feel more distrustful and leery.  I can show my affection in other ways, like doing things for you to show I think of you and care.  Please, look for alternative ways I might be showing my love, like remembering to do a chore for you that you dislike, or making something for you.  Some children that are on the severe end of the spectrum like to carry around objects from the people they love most.  This can be shoes, clothes, jewelry, or other personal items that have your scent on them and remind them of you.  This is their way of being close to you."

..."Moreover, only in an ableist society, in which the values of individualism and independence are held in high esteem, could a term like “dependence” take on a negative valence. Dependence on others for help need to not be seen as infantilization, helplessness, or tragedy, but as an indication of the interdependence of all human beings and as a reflection of a basic human need for assistance and comfort. The failure of the study to investigate the implications of these types of words lessens its usefulness is terms of understanding how to change thinking about disability...."
*** (On this post I disagree with her on First Person Language. See this post for more: http://musingsofanaspie.com/2014/06/18/the-logical-fallacy-of-person-first-language/  But I like that she gives an exploration of how medical students view disability.)

We were told that many Autistic traits are just a sign of our “sin” and we need to “turn to God and our issues will resolve themselves." When meltdowns and temper tantrums happen and we deal with them differently than most parents do, because the tempers are usually from either sensory overload or frustration over wanting/needing to do something ect, and NOT from blatant mean spiritedness or vengeance, we are labelled as “giving into their sinful nature.” Although we can not blame someone for their stance towards sin (and it is a prevalent ideology in culture) we can distance ourselves from that input, try to advocate when we can, but then leave that door open when the person clearly is not going to try to see a different perspective. For there is only so far you can go when someone believes that way...in relationships and in meaning. We see all as equal in differing ways, even those who have called us evil for embracing the ideas we have. We see them as no worse or better than us, but we DO see them as people who can not have influence in our life or a strong voice, and for that we distance in a respectful but healthy manner until their choices bring them to a place of compassionate being. If not, we can compassionately BE separately...and even though, from their perspective that may be hurtful or they will not understand, it is because of the construction of each reality, and the idealism and rhetoric of the story we tell ourselves, that we can not possibly enter into dialogue about life together because we are speaking two separate languages...thus there needs just kind and firm space. Our life has been so beautiful since we have implemented this goal of interaction. It’s harder, and we are probably misunderstood more as purely selfish, but we know what we are and we respect others for what they are even if we chose not to participate in their particular aspect of living in our one short life. 
If you have any thoughts or links you would like to leave, feel free to do so in the comments section.

Wednesday, August 13, 2014

Post Partum Depression Part One

I had severe post partum depression after my first two children. I was one of the lucky ones because I found help. For women who do not get support, post partum depression can effect the first TEN years of their children's lives and their own. You can help them obtain the understanding and grace they deserve by reading and educating yourself on the topic.

There are very real, very debilitating effects of Post Partum Depression. Below is a link and list of criteria. It is written in simple, graceful, laymen terms for mamma's tired brains who do not have time to make sense of medical jargon.

For those mammas who do not believe they have this or are beyond their child bearing years... I still believe this is an article worth reading so you can learn to recognize this in friends.  Many women are silently struggling. If not helped this can affect the future of the family, community and beyond. To be kind to those around you, READ, READ, READ. Understand and in turn you can be part of the  healing process:


A phrase my therapist gave me during post partum depression; "K, if you are going to worry about it - play the movie out until the end. If you are worried about the issues with the kids- play their story out. Do you see them at twenty healthy and happy? Did this issue really play that much into their storyline? Do the mistakes along the way create an even better storyboard? Play out your movie." This helped me rephrase issues in a way that was manageable to me.

I have a LONG story about PPD. I used to be a huge advocate of it, but am currently in such a different stage...I was also a huge advocate (and still believe in these issues...) of natural birth, doulaship and organics, but again, my life has naturally incorporated all of this and is now on different paths of advocacy. However, I am a passionate believer in ALL advocacy and these issues were a large part of my story. I may have had moments of sharing and changing the world regarding the topic of PPD, but reading a comment recently on another blog, I realized maybe I should re- post a few of my long ago thoughts on PPD, because that blog was closed a long time ago... 
This is part one of two.

Autism Speaks "Sounding the Alarm" Silences Autistic Voices

Sometimes I feel so excited about new books on Autism or new documentaries...I wait in hope that they will give some accurate information. Sometimes I am rewarded but most times I am left disappointed. I have written about the fact that Autism Speaks does not Speak for Autistics. Unfortunately,  the documentary "Sounding the Alarm" showcased on Netflix. Many people gave it one star and left negative feedback warning others, but shockingly Netflix erased every negative comment about the show on their website.  Isn't it enough that our voices are silenced by the biggest advocacy group that is supposed to HELP Autism? Why must our feedback on the show also be silenced? (See details HERE.)

The best review for this unwatchable film was found HERE.

Highlights of the above article are:

"Throughout the film, the “cost” of Autism is brought up several times.  From Bob Wright lamenting that “you don’t die of autism”, to doctors talking about the millions of dollars we cost, to parents distraught about paying out of pocket for therapies that are not covered by insurance.  There is not one point in this film that talks about the fact that not only do many Autistics find ABA (the therapy they bring up the most) to be dehumanizing and abusive, but also that childhood should not be spent in 8 hours a day of therapy.  Autistic children are children first.  They are not your science project. By far, the most disturbing part of the film for me was the filming of Autistic children and young adults in crisis.   Shown at their most vulnerable and since all of the parents claimed they were unable to communicate, certainly without their permission.

"I was able to emotionally separate myself until the moment a young man who was Autistic and had Down’s Syndrome was shown, clearly in distress.  His parents and caretakers sat around a table talking about how this young man was unable to communicate.He was communicating right in front of them!  They were not listening!  It made me so angry for that young man.In an earlier scene, a little boy was asked to give his mother a hug.  He complied.  I guess he didn’t comply enough because she asked him several more times when he was already done.  She later said “We want our child to say ‘I love you’”. Um, he just did." Excerpt taken from here:http://autismwomensnetwork.org/film-review-of-documentary-sounding-the-alarm-battling-the-autism-epidemic/
"That is the big problem with Autism Speaks, and with this film.   It’s a film about parents who feel like they were robbed of the child they wanted.  It’s a film about pity, fear and anger and the terrifying consequences of ableism on Autistic lives.  It is not a film about “awareness”.  It is a film about exploitation.
I would not suggest that anyone watch this film.  I know many parents have felt that they can watch these documentaries and feel “not alone”.  I just don’t see how you can justify your need for support at the expense of the dignity and humanity of Autistic people.   There are ways to find respectful support that don’t demonize and stigmatize our lives.   Use those 57 minutes of your life that you’d spend watching this to do something to make the lives of Autistic people better.  Because this film certainly isn’t helping." Excerpt from here:http://autismwomensnetwork.org/film-review-of-documentary-sounding-the-alarm-battling-the-autism-epidemic/

What could help fill that void of misunderstanding instead are educational links from actual Autistics. Please see the side of my blog for more articles under the label Autism/ Aspergers as well as the Musings of An Aspie links on the side. There is strength we can gain from this sorrowful perspective. We can mourn the misinformation, educate instead, love within our little world, and try again.

Monday, August 4, 2014

Lifestyle Diets- It is NOT just about weight or health. Why food is SO contraversial.

We are bombarded with food messages every day...in ads, in the news and fad health crazes. We are told we ARE what we eat. We are told to add life to our self by choosing the right foods....but all this information is often conflicting. For instance the food pyramid is promoted from a government standpoint yet it misses key facts in nutrition and eating.  Even though messages of food surround us, personal talks about food are less accepted than topics of politics or religious beliefs. It is more toxic to talk about ones eating habits in the presence of others than to talk about a belief in God. People get more insulted by personal food choices than they do by personal beliefs. Food feels personal.

I have been on an extensive food journey. As the owner of a researching brain, I read any material I could get my hands on. If it had been on the news, in the latest fads, or in a food movement I  probably read both sides of the issue and extensively studied each health benefit and downside. Based on this conflicting research, I came to a few conclusions on what wasn't right for ME personally. It was good I decided to read all this information...and there came a time when I had to STOP reading all this information. I also formed a few stronger opinions of what I would probably never put in my body again, YET, I had to come to those conclusions in my own time. I was intelligent enough that I knew about a decade ago that certain chemicals or food additives were pure poison but I just could not implement change ...until I COULD. That knowing is how I still respect people on their own food journeys. I remember that while I  knew some aspects of my eating were not right for me, no amount of willpower or research changed my life, until it did. Until one day, my life had taken a series of paths that suddenly led me to the one moment that changed everything about eating for me. And I STILL don't have it right. I am still aware that one day they will find conflicting evidence about something like liver/ salads...or whatever, and I will be shocked that what I thought was a good choice - wasn't. That is just how food tends to go, and that is why I disagree with people who promote eating as all about health. It simply can't be.

 Eating is not ALL about health because health changes. Health also may get better with some diets due to sensitivities and allergies and intolerance's (a big issue in our household and part of the reason we feel so much better now...we had MANY of these and thus why we are stricter about breaking our habits) but health still has a way of turning into illness, even in the most well maintained body.  Shit happens. Random sickness can strike the toxic and the healthy bodies. In fact, at times the toxic bodies can hold up better. If food was simply about health the conversations about it would have stopped years ago.

I do not often speak about our food journey except with close family who have the innate privilege of communing with us over food or feeding our kids food. God knows that everyone who knows us seems to be curious about it. I can often tell who truly wants to know our journey to enhance theirs and who just wants to refute our story. Because, let's face it, with all the research out there, many stories CAN be refuted. The one essence that can not be refuted is YOU. Is ME. Our own personal journey can not be refuted because it is OURS, deep down in our souls. That is what I try to stick to. My friend Lola gave me a lot of advice at the beginning of my journey because I saw what had worked for her and I honestly wanted to know more. I did not feel judged by her lifestyle. I knew I would never fully follow her journey and I still do not fully, but I took aspects that I could incorporate into my life and when I was lost on a few topics she pointed me in the right direction. That is the goal I have for sharing my story. I only share specifics of health or food thoughts to those who genuinely want some direction. For those who feel lost. But I never give it as "the answer" just one of the few answers they may apply to themselves...or not.

I have been "overweight." At Christmas this year I was 175 pounds on my smaller 5'6 frame. Now I am 139. Could I stand to lose more? According to beauty standards- yes! But each weight had a lesson of BEING. Being at both I can say that weight does not make one happier. Both of my frames brought different aspects, struggles and goodness to the table. Losing 35 pounds over the last few months felt glorious at first. The first time I fit into size 6/7 again I was delighted and dizzy, BUT after I got used to it, I found the same issues in my life surface again over time. I am the same ME. Perhaps in better clothes (it's so frustrating that quality clothes are typically made in smaller sizes. It was so hard to find things that suited my style before. Luckily I think that is changing.) But on a purely physical plane, I do feel more exposed at times. More aware. I do get the looks from men (and women) more again. I got them a bit overweight too but now it happens more and sometimes I feel very small and vulnerable. If it was about weight, I think I would still choose to be slightly bigger. But it's not about weight. It's not even fully about health...I will tell you what it is about for me ...and I believe that each person has to find their own balance and reasons that motivate them to stick with anything in life...beliefs, ways of living, food, sex...whatever. I tend to have more questions than answers when I research these topics and I am learning to like it better that way.

In regards to health, my tummy still hurts even with all the food changes.  Yet, I have LESS issues than before eliminating certain foods. I DO feel better in general. But my health is STILL not the best. Food is a layered issue. Not only are people STARVING but hurting people are throwing up or eating to numb. Food is about wounds. Food is about collective economic, political and status power wounds. Food is about judgement. I have watched someone get all riled up about Splenda and the implication that is poisonous more than they were riled up about someone denying their beliefs about God. Food does feel like it is WHO we ARE. But it's not. Food IS a part of us. Some of the saying is true, that we are what we eat, but that saying, even though it has truth, has always bothered me. Because in the end, we are not just what we eat. Our essence is more. We ARE what we ARE. I AM. 

I have learned when people ask about our food journey, to cause the least harm by saying, “We were having drastic gut issues and this was a last resort suggestion from our doctor and thus far it is helping.” I find that an expansion on that can cause feelings of judgement. Unfortunately, some people still get upset or worse feel pity. Our kids have a harder time with the phrases that tauntingly cringe, “Too bad you can not eat this…it is SOOOO good. I feel so bad for you.” We have told them children do not understand but adults should not be participating in that behaviour. We avoided people the first two months of our lifestyle diet change, when that phrase would have undone us. Now we just think, “It is you who is in pain on my behalf and I do not feel pain about this- so why do you?” 

I do not think our diet is right for everyone. I do not think any diet is right for anyone. Just like I do not believe that one lifestyle, political stance or belief system is right for everyone. I believe we all have to find a way to enjoy our health and food that is worth it enough for us personally to stick with it. I also believe this has to come with a mixture of working through our layers of pain and grief and our layers of joy and BEING. That is the ticket. It does not matter the weight or what foods we choose to eat in particular (although I do agree that getting off of sugar for anyone helps heaps with immunity and hormonal issues) but it DOES matter how we feel on it. People have accused lifestyles like ours as “inhospitable” because we can not go anywhere to eat and we can not accept other’s foods or we can’t have people over. I disagree. We never liked to do that anyway. We preferred to go over for tea or light salads and fruit before too (because of a meat paranoia I have. I only eat at those homes I KNOW well enough to monitor this. It's my personal issue. Plus, I generally just prefer to eat at home or with our parents and bestie. I find I can concentrate more on the topics without food because I am an Aspie and the sensory aspects greatly distract me. It's different for everyone.) We gently decline but never in a way that is meant to harm. Sometimes we decline based on boundaries and self love, most times we decline simply because it is best for everyone in the end. We still enjoy community and still have people over for tea and food…and I do have snacks on hand that have gluten/ sugar/milk for any of our home events. We try not to infringe our eating on others. 

However, I DID have people who used to make me feel awful by their discussions on weight and God. I did not like that and it taught me that if I ever did change my eating, I would not participate in that…and I still try desperately not to unless ASKED. I always appreciated the people who SHARED their story when asked.  Most know we are pretty much only raw eaters, but that is because we are adamant on our kids not breaking the diet because we know it would cause them pain in the end. They would feel very sick if all the people who wanted them to indulge got their way because it would now be too rich on their systems. While food is part of hospitality I have come away with this lifestyle realizing it can still be incorporated to a lesser extent in community and still be enjoyed. I adore a picnic with cold chicken drums, fresh fruit, dark chocolate and fresh home made iced green tea with tiny bits of mozza cheese chunks ( we are still 15% dairy with butter, mozza and Greek yogurt.) So I can still commune with my food and others if need be. 

 I have to be more careful sharing my food journey to not insult than my religious journey. That was shocking to me. I struggled so deeply my first few months on our lifestyle food change, and the only thing that kept me going was the venting on my private blog and supportive friends. I was so grateful to be able to SPEAK my existence. I could not do so otherwise. Weight is not the issue. In fact, they have proven in a few studies that women live longer who have an extra 10-30 pounds on them then women who do not. Probably because a random illness has more to work with? That does not make them better though. Perhaps it is about women who are soft in their essence and sometimes that tends to carry on  somewhere in body…whether a little belly, rounder thighs or cheekbones or whatever? That said, thin women can also carry this essence, if for them the thinness comes from genetics and not obsession with weight. Their eyes carry the softnesstheir essence shows a softer side. I can always tell when it is a woman who is naturally thin and a woman who WORKS too hard to be that thin. I also understand that a woman who works that hard is finding her security in her body. Just like a woman who is overweight is finding security and safety in her body. It’s the same feeling/ goal but in opposing manifestations. Overweight and underweight tend to come from the same root core. This is why not one manifestation of body is better- thin or overweight or average. We are all simply struggling TO BE in the here and NOW. We all tend to deal with it in some form or another. If food was solely about weight, food would almost be a non issue with the right amount of therapy and research. 

If food was about health, it would be also be a non issue. If everyone was magically better and healthy with the right food choices ALL the time... that would catch on! But health is not so cut and dry. Weight and health are pieces of the food story. Shame stories, history and brokenness are a piece of it. Wholeness, joy and essence are also a piece of our food stories, but in the end there are so many layers and so many more questions.

For me, it always comes down to BEING. I no longer crave any kind of sugar or any kind of food other than some stir fry, rice or salad or smoothie…I just don’t and that DOES free up my life. It enables me to live more in the present because I struggle with living in the future. I believe this futuristic stance on life comes from my upbringing. It was always about getting to heaven when you die. It was always about death. I LIVED to DIE. I find there is some brokenness in that theology. I no longer live to die...because that is a deep travesty in the gift of life I have been given. There are many layers of that, I will not go into now, but I realized that food was part of having me rooted in the future. It was always about what I would eat NEXT. What I would eat for supper. What I would eat for a snack or to harness my cravings. I don’t think I will ever go back to eating how I ate before simply because of that one factor of the future. I’d always feel craving, guilt or confusion over health and food. Currently,  I KNOW I am eating the healthiest that I can manage and there is no guilt when I enjoy my dark chocolate, my berries that used to be so sour to me but now are so sweet, and stuff that was tasteless before because I was so numbed by the extra sugar taste or stimulants I was used to. THAT is what I love about now. Not weight, not health, not even my new clothes…what I love is that I taste the tiniest bit of allowable food and  I can actually ENJOY it NOW. I didn’t before. I couldn’t. I was looking for the next pleasure sweetness. I needed all the tastes…(this is strictly my journey and not yours…we all have different ones) and now I don’t. Whenever I hear people say, “Oh she is gluten, diary, preservative and sugar free…so basically she is on a tasteless diet.” I smile. It happens a lot…because they feel judged so they judge me…and I will admit at first (the first month or two) I felt the same way. It felt tasteless, but NOW, I TASTE every morsel of what I eat, how sweet ripe raspberries are, how the tiniest bit of honey feels divine, and how the mix of “bland food” is a delight on my tongue. Food no longer controls me and that is why I stick so strongly now to our lifestyle diet. It is enough to motivate me staying on. The weight was never a motivator which is why I failed at diets that I tried before when I wanted it off. I had to come to a place of belonging weight wise before I could even start to think about my own food journey. Being "overweight" was one of the best moments of my life, because it taught me to face myself just as I was...just as I AM. While health was a motivator for me at first, and it was enough to get me on our current path, I STILL have some of the same health issues. Health comes and goes (although I do have better immunity now) but being FREE to enjoy my food that I do eat, but not think about it again until it is time to eat…I always wanted that. That motivates me to stay in the present. I love the power of NOW. That is what motivates me. I do feel more vitality and health in some of my choices and that helps! I do believe food matters, but it is not the only thing that matters. Its also not about beauty. Essence IS beauty. I was beautiful before, I am beautiful now, and I will be beautiful until I die because I was MADE for NOW. So are you.

In the controversial terrain of diet, food and lifestyle you have to find out what motivates YOU to live NOW. You have to face your own layers, embrace your darkness and light, and find out what keeps you grounded enough to be present. Because that is the greatest gift...LIFE. Essence. You, being worthy, BECAUSE you EXIST. Not because of your food choices, your body control, your self control, diet or exercise regime. Not even because of your health. It comes down to your soul essence of belonging and love. Who are you RIGHT NOW? The size of your body is part of you but not at all a complete picture of you. The health of your body is part of you but is not what defines you. The food choices you make point to inner issues, past stories and present anticipation but it it not all YOU. Don’t embrace that judgment lest you judge. Do not become judgements or allow judgments to become YOU.

I am. I am worthy. I am because I AM made in the image of a greater I AM. I simply am and in that becoming I see you the same way because YOU ARE.

p.s. As it tends to happen because of where I live and my socio political climate I participate in, I am speaking from a place of privilege. I am aware and humbled that I get to even CHOOSE the quantity and quality of what I nourish myself with. This post is considering an audience with similar people of privilege and will obviously not apply to certain demographics. It is a great blessing to be able to choose what has a part in keeping us strong, healthy and responsive. I am not saying otherwise. I do think food needs to be a considered part of existence. I do not think BEING is completely tied up in it though. We have to go to our roots of BEING before we can find healthier ways of participating in life (food, beliefs, exercise, sleep ect.)