Friday, May 15, 2015

The Only Things I'm Positive About #AutismPositivity2015

My husband and I took a moment to watch our son asleep this morning. He was wrapped in a tangle of sheets, unwilling to release his firm grip on a tiny piece of plastic that looked to be a lego piece. His handsome face was peacefully inhaling and exhaling deeply and not quite snoring. His arm was up in a position that made it clear he did not so much drift off to sleep; rather, his body won the battle to rest and recuperate against his iron will to keep moving. Ever darkening peach fuzz above his lip does not detract from the innocence of our son's face in sleep. These are the moments when I catch my breath and wonder how I was part of producing such a lovely human being. I have a difficult time understanding how people fail to see him as we do.

What a hellish year its been so far. So much we are trying to shield him from, so much hate, harm and pain. Surrounded by all the danger and uncertainty I was so sure our nation would outgrow, I can say the only things I feel positive about are that we love him, that autism is not an anthropomorphic demon "with" him, dogging his steps, waiting to trip him up, and that this will of iron he has had since infancy is actually becoming steel, forged in the  fire of these horrific adversities life keeps throwing in our paths. I'm positive I belong beside him, guarding his flank against the racist, ableist, ignorant, hateful and well intentioned enemies that stand between him and his rightful place in this world. I am positive he is not a burden. I am positive of his right to be part of any community he lives in.
Mustafa Bey

One of my favorite pictures of him reminds me he is growing up. People say he looks much older than 12. My giant younger brother was about this size at 12. Mu holds a resemblance to his paternal grandfather, a man who was tall and commanding, a maritime engineer. All those things about him
that intimidate the uneducated have never bothered me. I'm not sure why that is. I call him my Pan-Turkish American Pehlivan. I sing songs to him about John Henry and Kiziroğlu Mustafa Bey and tell him that those who were like him never gave up; they commanded respect and he should do the same. My concern continues to be that he should be allowed to participate in life as anyone would. Autism shouldn't be something he's "with", like a vaudeville ventriloquist's dummy in a suitcase that is carried with him, attached to an arm. Our son's neurology is  a descriptor of who he is like any other adjective we use to try and define him.

 He is American/Nonspeaking/Turkish/Hispanic/Black/Indigenous/Autistic/Obstinate/Charming. He is all that and yet more than the sum of all. He defies description.  He reflects and refracts each aspect of himself. That is who his is. Sometimes I see him pounding down the stairs they said he'd never climb without support or laughing, jumping wildly in the sunlight and laugh with the sheer joy he taught me to express fully.  I pity those who don't see him as I do. Perhaps it is the same as gazing too long at the sun. Maybe they should learn to not look directly at him just as he, in deference to not seeing their souls' secrets bared, does not look into their eyes. Realities can be overwhelming.

The hardest thing about being Mustafa's mother is people around me projecting their own ableism on me and telling me how I should feel about him. I shouldn't be happy because they wouldn't be. I must accept that he is an unacceptably divergent son, because they cannot accept him. I must be near some breaking point because were they in my position they would be. They have no idea. They just assume they do. Their forcibly imposed conclusions are the most difficult thing to fight each day. The time consumed countering all that insistent negativity about nonspeaking autism could be better used just getting to know my budding teenaged son.

When a word or short sentence bubbles its way to his lips it is a sweet jewel because verbal speech is nearly impossible for him. I know. I've seen the scans of his brain. His voice, a deeper richer combination of a voice I inherited from my mother and her ancestors, the voice our daughter has in a slightly higher pitch, is heartbreakingly beautiful. If Mustafa ever sings it will be something to hear. But that doesn't matter to me now. I just want him to be given the respect he deserves. He has inherited something I did not wish to give my children; I don't mean an autism gene. I mean a legacy of being a marginalized human being in a negative world. Acceptance? Acceptance is not enough.

I am opening the eyes of my heart and telling the world, here is my beautiful neurodivergent son, my most precious gift to you.  You cannot simply accept him. Respect him. Allow him to be an equal member of society. Cease killing his peers and silencing them. As for loving him?

 We have all love he needs.

Wednesday, May 13, 2015

The Case of Juliette Forbes & Beegle Family V United Airlines

Juliette Forbes, May 8, 2015 (KOIN)
Let's begin this with a simple question. If you are a frequent flyer, have you ever been on an airplane where a baby onboard cried the entire flight? Were the baby and the entire family removed from the flight? I'll just answer that question for you. No family has ever been escorted off a flight by police because their infant was upset during the flight. This is because the disruption the infant/individual was causing, however uncomfortable for the other passengers, was neither a threat to the pilot nor kept the pilot from flying the aircraft. Babies cry. Children and adults for that matter sometimes are not aware of any discomfort with flying until the plane is in the air. People get sick on flights. Things sometimes happen they can't control. Unless there is a direct threat or a medical emergency, flights continue to their destinations, complete with howling children or vomiting airsick passengers.

Now let us consider the case of Juliette Forbes, a member of the Beegle family, which you can read about in detail here.

The Beegle family and their daughter Juliette, a 15 year old autistic passenger, were on a return flight to Oregon. Juliette began vocalizating during the flight. Apparently United Airlines had the Beegle family removed from the flight by police because Juliette's vocalizations were allegedly disruptive.  Quoting KOIN 6 News follow up article on this: "There was a lot of howling and like, what’s going on?” passenger Marilyn Hedlund said. “It never stopped.”

The removal occurred after Juliette had calmed and was occupying herself appropriately. Juliette did not threaten or harm herself or others. Juliette was not a disruption or direct threat to the pilots, who were in the cockpit of the plane. I've been on flights with drunken athletic teams and loud, inebriated college students returning from Spring break. I've been subjected to flights with intoxicated tourists getting grabby with me, other passengers and flight crews. I've been trapped on flights with infants and toddlers having 3 plus hour meltdowns, and some passengers who were airsick,  or otherwise ill. In my frequent flying past, which lasted roughly 30 years,  only a lady who went into labor was removed from the plane and into urgent medical care. None of the disruptive passengers were escorted off by police.

If infants and young children melting down do not pose a threat to pilot and crew, and drunken college sports team members literally jumping on their seats and removing their clothing don't pose a threat to the pilot or impede his ability to fly the plane, then disabled teens vocalizing don't either. So if we can conclude that Juliette's vocalizations were not more or less distracting than drunken 20 year olds singing and dancing, then this family was removed because their child's disability was not something the cabin crew understood and therefore they reacted to her vocalizations with fear and prejudice.

Tilt Wheelchair: Quickie TS
credit, Christopher and Dana Reeve Foundation
There is a responsibility we have as care providers and  parents of disabled teens. We need to be thoroughly aware of  the complete scope of ADA accommodations for our loved ones traveling on aircraft and through airports. Here is an example of what I mean by knowing your stuff, legally. A friend of mine just informed other parents without special needs loved ones about the logistics and coordination arrangements her family makes with the airlines to insure her son's specialized wheelchair is in place to both successfully transfer him to connecting flights and to help him deplane upon arrival at their final international destination. Standardized airline wheelchairs cannot support his spine, placing him at great risk of harm. If the proper wheelchair device cannot be made to fit in the narrow aisles of an aircraft, then a provided wheelchair must be adapted to support his spine or the airline is not only placing him at great risk but also in violation of the Americans with Disabilities Act. This explanation of accommodation and a disabled teen's right to inclusion in commercial airline travel included an explanation of the right to have medical boxes containing medications that must travel with him at all times. All of this is part of the accommodation an airline must make to give this passenger equal access to plane travel. There is no compromise here. That is the law.

While I know every contingency can't be planned for, I can think of no instance except for a direct threat of harm to the pilot or a medical emergency that justified United Airlines having this family removed from the flight by police after an EMS team confirmed everyone was fine. This type of injustice to autistics and their families has happened before, and will continue to happen until our families understand that they must hold the airlines accountable for providing the travel accommodations needed by passengers with invisible disabilities and cease allowing commercial airlines to deny their right to travel because of their own ignorance of what autism is and how to accommodate autistic passengers who pose no threat to themselves or others.

Families also need to have a contingency plan for what to do should everything go awry. Flying economy is uncomfortable for everyone but more so for autistic individuals who must be packed in with sights, sounds, and smells that can overwhelm anyone easily. The world is unjust, particularly for disabled teens and adults. While we are acting to make it more equitable, we have to also plan for the worst and have a protocol in place should flights get delayed, cancelled, or something this awful happen.

It is past time we fight the injustice of how our children and loved ones are treated onboard aircraft. If we remain silent, autistic people, or any disabled people who vocalize, behave in a divergent manner, or simply have a bad flight, and their families will be banned from airline travel despite the myth that everyone is equal under the law.

I didn't want to address the issue of the how Mrs. Beegle handled this, but I'm going to, because the main issue here, disability and accommodation, is being forgotten in the heat of argument about a person with disability on a restricted diet, picky eating and airline rules about first class meals in flight.

 Language is everything. Prior to boarding a plane,  stating a loved one is disabled, is on a restricted diet, and you would like to insure a hot meal is made available for her and will pay the additional cost for it should have been done well in advance of a return flight.

This is not about picky eating. This is not about catering to the whims of a person. This is about how to insure accommodation for disabled people on the flight.

Also it is really important that if we don't want to have our loved ones treated like potential threats we don't present them as individuals who will explode any moment if they don't get a First Class meal.

 I am now curious as to how the family was able to travel to Disney world by plane without incident.

Wednesday, May 6, 2015

Oprah, D.L. Hughely, Inspiration Porn, and Presumption of Competence

It is all over the news and the internet. D.L. Hughley in mid interview breaking down. Oprah turned that moment into autism inspiration porn. I winced. Oprah's presentations of autism have always been from the perspective of parental moments of grief and have always made me, a parent of a nonspeaking autistic 12 year old son,  wince for a very long time. So let me break this down for you dear readers. Here is the video clip:

First let us clear up what you are witnessing. You are not witnessing the tragedy of autism. You are not witnessing the overwhelming triumph of an impaired person doing something outside of his routine. You are witnessing a father momentarily accepting his son's competence.  He says he did not believe his son, who is a 26 year old college graduate, capable of filling a car with gas. What will it take to prove to the man that his son will be okay? He can eat the same thing and follow the same routine each day for the rest of his life. That doesn't mean he can't make it. Rigidity is a stereotype. His son is a grown man, who by saying "Daddy I'll do it" was saying "I am in a space where I can do this for you." We have to have more confidence in our disabled offspring. I know we fear for them, but we fear for all our children. The risks with our disabled kids are just easy to see.

 My son will probably never drive and  will only be able to communicate with speech supports like an iPad. I presume he is competent. I don't reject the possibility of a high school diploma, though the system deprives him of one. I don't discount the possibility of his continuing on to college if he wishes to, though everyone else pushes me to insist he be trained as a janitor or someone who pushes shopping carts all day for the rest of his life. Mu will do what he finds fulfilling. Not what others impose on him. He will be autonomous but on his own terms. If he wants to push a shopping cart and enjoys it he will. His agency in his life is important to me.

Also sad to me is that a 26 year old is being discussed who is fully capable of discussing himself. Were he any other 26 year old his own feedback and point of view about this might have been requested. Publicly, we are still doing this warped coverage of grown neurodivergent people where we marginalize them and don't allow those capable of speaking for themselves to do so.

Oprah. Stop making inspiration porn. Please. It hurts so many. How Mr. Hughely's son feels about his own competence is just as important as how D.L. Hughely feels knowing his son is a man and can do things his father has no clue about. I hope going forward he allows his son to let him know what he can and cannot do and when. Many more individuals who appear more disabled have accomplished great things in life. Our society must change its perceptions of what our disabled loved ones can and cannot accomplish and cease presenting each accomplishment as a miracle.

P.S. Oprah. Be radical. Try interviewing an autistic adult about autism for a change. Without the tear jerking violins in the background would be really good.


Post Script: After publishing this article, I learned from Miz Kp at Sailing Autistic Seas that D.L. Hughely cussed her out when she called him out for calling his own son the "R" word during a comedy routine. After reading this, I can say that Oprah's staff didn't do their due diligence on what kind of special needs father Mr. Hughely is. Making your disabled son fodder for your audience then insulting another autistic young person's mother. Wow. Keep it classy D.L. Glad I don't watch your work. Please don't act like you support anything pertaining to our children.

The entire exchange can be read here:


Thursday, April 9, 2015

Dear John (Elder Robison)

Dear John,

Remember during the efforts for the freedom of Reginald Neli Latson when I said that I was for the first time, doing something I thought I would never do; and then, I posted something you wrote and shared it on social media? When you asked what drove me to make such a statement I wrote back that our writing is entirely different as I write about the marginalized populations within the autism conversation?

I need to also say I avoid reading some of what you write because I wish to not respond emotionally to it and be hurt by your words. I occasionally forget my vows to avoid your content and read something you write. I then regret doing so. Not because it isn’t well written, but because I view the world so entirely differently from you that when you make a statement from that large platform you have, and that statement has the potential to harm people like my son by influencing the way people view him and his peers, I get angry.

Here is an example, from a blog post for Psychology Today titled “April is Autism Awareness / Acceptance Month.”  You write, “We may have gifts too, but disability remains the basis for diagnosis. Some autistic people are rendered non-speaking by their condition, and I can’t imagine who would celebrate that. Others live with significant medical complications like epilepsy. I’ve yet to meet anyone who celebrates that either.”

Crohn's patient Bethamy Townsend Celebrating her honeymoon
and  rocking a Bikini with colostomy bags credit HuffPost UK
Let’s just pause for a brief statement on living with significant medical complications. I live with Crohn’s disease and other health issues. I have survived a great deal. I celebrate being here, as does my family each day I outlast expiration dates, because I was told I would neither have children nor live to age 30.

When you write about nonspeaking autistic people, people like my son, your writing perpetuates the same ableism that people who are not autistic (and have no concept of what the experience of autism is for nonspeaking individuals) does. Have you asked a nonspeaking autistic person if they wish to celebrate? Not being able to use one’s vocal chords to produce speech does not mean not being able to think or communicate. Over and over again, human beings demonstrate neurological competence in the face of medical diagnoses that negate competence. We have examples like Jean-Dominique Bauby, who produced an entire book after waking from a coma and while being paralyzed such that only one eye functioned.  Your statement discounts the research of British neuroscientist Adrian Owen, who, to quote an article on brain activity:

“ …described a patient who showed all the clinical signs of a vegetative state but whose brain activity suggested a considerable degree of consciousness. Horrifyingly, the report implied the existence of patients in a state worse than the usual locked-in syndrome: conscious but without any means of expressing it to the outside world, not even through the batting of an eyelid. While demolishing established clinical rules, this research also carried a message of hope: brain imaging was now sensitive enough to detect the presence of a conscious mind and even to reconnect it with the outside world.“

This news is cause to celebrate. What it means is that some measure of neurological competence can now be detected by brain imaging. That means a greater population of nonspeaking people have the potential to be understood whether they speak or not. Evidence like this urges us to presume competence exists in nonspeaking people and respect them accordingly.
Martin Pistorius and wife, Joanna credit NPR

This statement you wrote ignores what autistics like Carly Fleischmann, Emma Zurcher-Long, Henry Frost, Amy Sequenzia, and nonspeaking disabled adults like Martin Pistorius stand for, and what they
say when asked about being a nonspeaking person prior to finding a means to communicate. All say that they are presumed incompetent, maltreated, and were entirely dismissed prior to being able to let the world know that their brains understood what was being said about them and what was being done to them. We have seen a brain command an exoskeleton encasing a paralyzed body to kick a soccer ball. We have heard people who learned to type and use AAC to communicate tell us that being in what medical professionals define as a vegetative state, or being a nonspeaking person, does not mean you don’t think, feel, and understand, and yet you still see no cause for people like my son to celebrate?

My son’s very survival is a miracle. He doesn’t have to prove his competence by demonstration of savant talent. Pity is not wanted or required. You don’t know him. I do. He NEVER gives up. He overcomes his fears daily and takes great personal risks to reach out and communicate with us. Nearly everyone in society doesn't feel his life is worth celebrating. That includes some autistic adults who use verbal speech. But our family feels the way our son lives his life, and his repeated demonstrations of personhood in a world that denies him competence, make him a heroic person. He is a stronger person than anyone I’ve met. I’m over 50 and have travelled extensively, so when I say anyone I mean anyone in a very large pool of human beings. I know I am not alone in being a witness to the greatness of a human spirit as it overcomes so many obstacles and shouts with all means available to be heard. I am so sorry you do not feel that is worth celebrating.

It is neither my intention nor my wish to deconstruct your entire piece. I only hope to demonstrate one of the reasons there is this canyon divide between how you and I view autistic people like my son. He doesn’t just exist. He lives in bright, live, movements and gestures that communicate his joys, sorrows, struggles and victories.

Each April we remember all we were told he could not and would not do that he has already done. We celebrate his right to personhood not qualified by a savant skill to justify it. I will continue to do so. Because he, like so many others I’ve met who are out there demonstrating their competence everyday, are worth it.

I don’t call the month of April Autism Awareness or Acceptance Month anymore. I call April the month of Mustafa and his neurotribe. I call it the month of possibility. The month of pride in obstacles overcome, and the month of the idea that autistic can be an identity without qualifiers or conditions, deserving of respect and worth celebrating.

Of course the public needs to be educated about what autism is, but that is because what we call autism continues to change and at each evolution the definition of what diverges and what that means changes with it. Of course we need help. I don’t think anyone including my son would deny that he needs accommodation and supports to access our community. He knows I am aging, I tire, and families need help too. But that doesn't mean that who he or his peers are should be denigrated or thought of as unworthy of celebration because it diverges from those autistic people who are less distinguishable from typical peers.

I will try, going forward, to read more of your words. Honestly this is the only way in which I can understand what you wish to communicate fully. In exchange, I ask that you try reading the words of nonspeaking neurodivergent people who communicate by other means. Reach out to them and use your platform and your words to help rather than expressing you see no cause to celebrate the idea that they are nonspeaking.

I think this would help us both understand one another better.  Happy Autism month, John.



Sunday, March 8, 2015

On Digital Exhibitionism By Autism Parents: Why Parents Live Tweeting Their Disabled Children's Worst Moments Is Red Flag That Should Concern Everyone

Giving autism parents a bad name:  Jason & Kate Wells
credit Twitter
The Internet age has given rise to a dangerous type of exhibitionism among people in general, and people who need parenting courses in particular. This becomes dangerous when the pathological demand for public attention places a child at risk. There is a pattern I have observed among special needs parents who later do harm to their children. This is how the pattern plays out.

1. The parents spend over 60% of their days generating written content that disparages their child and presents themselves as martyrs for having to parent divergent children.

Isabelle "Issy" Stapleton credit Facebook
2. The parents escalate to posting videos of their children at moments of crises in order to support their case that the child is at fault for the failed lives of their parents. No one questions whether the parents induce crisis in order to record content that can be publicly shared.

3. The parents are successful in gaining either local or national media attention, thereby rewarding the production of content damaging to a disabled child that will remain on the internet forever.

4. The parents crowdfund for assistance from the community based upon the negative content produced about their children.

5. The parents attempt to murder their children.

6. The parents are defended by others for attempting to murder or murdering their children because prior negative content showing their disabled child at a moment of crisis is used as an excuse.

While all this is happening no one seems to ask:

How the parents have time to videotape a moment when they should be keeping their children from harm to themselves and others?

How the parents have the time to constantly broadcast negative content when parenting the victimized child is such a tremendous challenge?

Alex Spourdalakis' photograph set in a funeral bouquet, credit HLN
Why any parent in good conscience  can believe it is okay to broadcast the worst moments their children experience to a global audience?

Why aren't the parents seeking mental health support for themselves if they have entered a state of depression so extreme that all content they produce about their own children is negative?

For those readers born before the internet and social media, imagine what it would be like to have your worst, most humiliating, childhood moments broadcast forever to anyone who chose to view it. There was a period when there were no rules to social networking, and parents would demand to be added to adult children's accounts only to post embarrassing and on occasion humiliating photos of their own children publicly to be viewed by the person's colleagues, peers, and complete strangers.  It took time for rules to appear that warned parents that the internet is a public broadcasting method and content posted on it can become viral and magnify harm done regardless of intent.

I am truly tired of this pattern of self serving exposure at the expense of one's own neurodivergent children and frightened of its consequences. Believe this is not a problem? Examples of parents who followed this behavioral pattern:

Issy Stapleton's mother, whose blog about her was named The Status Woe,  and who drugged her, left her in a car and tried to poison her with smoke from barbecue grills.

Alex Spourdalakis' mother and god mother, who after massive media coverage and fund raising efforts using video of Alex in four point restraint naked on a hospital bed, tried to overdose Alex on sleep medication, then stabbed him repeatedly and violently to death. Not satisfied, they then stabbed his cat to death as well

London McCabe, 2014, credit NBC News
London McCabe's mother, who after adopting a similar style of blogging and successfully fund raising, made statements on camera in front of her son about wanting to "pull a Thelma and Louise", and later threw him off the Yaquina bridge. I could fill this blog with examples like this. It is simply too heartbreaking to do so.

 In the past, I tried to call out parents who exhibited these types of behaviors because I feel these acts are a sign of worse things to come and I strongly believe this is a pattern that will not end well. Posts like "You are NOT Adam Lanza's Mother"  are an attempt to show other special needs parents that these acts are dangerous, permanently harm their children, and are a red flag the parents need counseling. But the internet and any moment of media attention are lures that no voice of reason can overcome.

Apparently parents Jason and Kate Wells have not garnered sufficient attention for themselves and have taken to live tweeting their autistic teenaged son having a meltdown on the excuse that they are educating others. I will not post the article about it. All I will say is they are a couple from Peterborough, Canada. Dehumanizing your own child does not educate anyone about autism. This degree of exposure of a vulnerable teen is no different from making them a side show act at a circus. It is abusive behavior and bad parenting. It is a display of the serious psychological problems the parents are having and is a sign that the parents need crisis counseling and intensive interventions for their own mental health and the safety of their neurodivergent son. It does not show anything about their son, his neurology, or his adolescence, except the parents' own ignorance of what is happening to their son when a meltdown is occurring and how to help him manage it in a humane, professional, and loving manner.

I take issue with any parent violating health laws, the privacy of their own children, and placing their children at risk of harm to feed their followers and gain social networking capital. I find it particularly disturbing behavior when the child is disabled, and may never be able to litigate against the parents for presenting damaging video content on the internet about them.

The most important take away from this latest episode of digital exhibitionism at the expense of a disabled teen is all of us who are parents to special needs children need to understand that this is not something that we should be applauding and encouraging. It is something we should be warning parents about as an indicator of serious problems in that home. It is a crooked line in a pattern that leads to a bad end. Every autistic teenager is not melting down attacking their parents 24/7 across the country. Broadcasting individual negative experiences in a one sided manner and generalizing across the community because individual parents may have a personal wish to get their teenaged son out of their home is WRONG, disturbing, and causes harm to all of us. Address the actual issue. If as parents the Wells need to transition their son out of their care because they are unable to care for him, they need to contact the proper authorities or do what other parents have done. Parents have created individualized housing, care, and transitional services for adult children in places where those services are lacking. Had the Wells spent less time broadcasting and more time reading, perhaps they could have broadcast how they worked with their son to help him through the additional stressors of his teen years and gain him some respite and autonomy from them.

We need to begin looking for solutions to help our children rather than using the internet to make their lives all about ours. It is called being a parent. Let us all begin acting like responsible ones.


In memory of all the murdered divergent children, with hope that speaking out helps end the killings

Friday, February 27, 2015

Kudzu, #AutismSpeaks10, & The Autism Wars

When my son was 2 years old, something pervasive, noxious, and invasive entered his life and ours. No, I don't mean autism. I mean Autism Speaks. Autism Speaks, is quite literally the kudzu of the autism and autistic communities.

Clemson University researchers are nearly lost
in the overwhelming cover of kudzu vines,
which have spread over every surface,
object and tree in the area. (Credit: Clemson University News)
First I should explain what I mean by kudzu, for those who may not know. Here's a quick primer. Quoting The Weather Network's article,  kudzu is the
"Plant scourge of the South adding more carbon dioxide to the atmosphere, aiding in its own spread"
"It quickly covers the ground, buildings, and anything else around, blanketing fields and even climbing up trees. Any plants unfortunate enough to be overgrown (including trees) are deprived of sunlight by the dense cover of kudzu leaves and they quickly die out. These vines now cover over 3 million hectares of land throughout the U.S., mostly in the southeastern states - Georgia, Alabama and Mississippi - but it has spread south into Florida, west to Texas and north as far as Ontario. "

"While these growths have taken on epic proportions, that's not the only problem from kudzu. It's already been shown that kudzu causes more nitric oxide (which is also a byproduct of burning fossil fuels) to be released from soils, which has caused an increase in ground-level ozone levels during summertime heat. In addition, as the plants continue to spread northward, especially with climate change, they are actually increasing the amount of carbon dioxide released from the soil into the atmosphere, introducing a feedback loop. "

"According to Malcolm Campbell, a professor and the vice-principal of research at the University of
Kudzu seed pods credit Wikimedia Commons
Toronto, in his piece in The Conversation, the research of Nishanth Tharayil and Mioko Tamura, from Clemson University, shows that the plants choked out by the kudzu tend to lock more carbon into the soil."

"The study, published in New Phytologist, showed that despite a 22 per cent increase in soil litter (due to the abundant leaves the kudzu drops during winter), there was a 28 per cent decrease in soil carbon after a kudzu infestation invades an area."

"According to a Clemson University press release, Tharayil said: "Our findings highlight the capacity of invasive plants to effect climate change by destabilizing the carbon pool in soil and shows that invasive plants can have profound influence on our understanding to manage land in a way that mitigates carbon emissions.""

Flowering kudzu credit Wikimedia
We watched in stunned helplessness as Autism Speaks, like kudzu, invasively entered our lives and propagated gigantic, noxious campaigns that spread vapors of ablest humiliation, hopelessness, and resentment sprinkled with the occasional seasoning of inspiration pornography around the world. Their misguided doomsday scenario of fundraising by fear of an autism epidemic oppresses supporters to relieve that sense of helplessness by raising money to aid it in spreading its depressive rhetoric. Local autism nonprofits directly helping autistic adults, children, and families saw funds being choked off as Autism Speaks launched massive media campaigns to generate new fundraising revenue streams of tens of thousands of dollars towards odd research efforts (read about why Alison Singer resigned from Autism Speaks here) each year.

As kudzu spread north, killing every native plant in its path, Autism Speaks expanded into legislative efforts and advocacy, with all the finesse of a bull in a china shop, upending or appropriating efforts by informed legislative activists and organizations not in lock step with them while trying to mandate its own singular, damaging agenda.  Autism Speaks spoke about autistics while choking out their voices. It claimed it spoke in the name of all autism parents while demanding all parents accept their idea of what autism does to families and what autism policy should be. It has spent recent years trying to obliterate any other advocating voice for autism by such misadventures as:

  • attempting to come to Washington D.C. and mandate their singular biased opinion of a national autism policy all the while ignoring disabled disability rights activists and all other autism and disability nonprofits. (This effort continues.); 
  •  targeted releasing of another apocalyptic "autism the epidemic" PSA (Sounding the Alarm) and massively pitching and screening it privately, along with sprinkles of funding, to various schools of public health and health care facilities in order to add professional legitimacy to their private autism agenda; 
  • that disturbing genome database campaign in collaboration with Google  named and hashtagged "MSSNG" meaning "missing", implying their view that a puzzle piece is missing from our children's brains and bringing to mind disturbing and dangerous eugenic practices of the past that began with attempts to prove that any divergent population was less than another genetically
  •  going as far as traveling to self promote and attempt to control the autism conversation in Catholic countries by marketing their organization to the Vatican complete with founding member Suzanne Wright's unfortunate statement that families look upon their autistic loved ones as St. Francis looked upon someone with Hansen's disease. 

When autistic activists, who remember their lives as neurodivergent children in a world of refrigerator mom treatments, Lovaas punishments as therapy, shock treatments, institutionalization and unspeakable harm, raise their voices in protest, Autism Speaks unleashes their supporters to bully and insult these justifiably angry advocates. It is a sad spectacle to witness.

Parents attacking autistic adults is in a very real sense akin to those parents attacking adult versions of their own autistic children.  Their inability to see that in their frenzied passion to attack (in the name of a mega nonprofit that uses legal power and corporate might to defend itself with impunity) they are damning the only people who know firsthand what the futures of their own children will hold and are fighting like hell to insure better futures for autistic children is sadder still. Would they want some stranger to attack their children as viciously as they are attacking autistic adults under the cover of social media? It is heartbreaking to see this degree of hostility and compartmentalization in Autism Speaks supporters. Aren't we all also parents? Aren't we supposed to have maturity and control our online behavior? Melting down on social media over a hashtag trouncing is not the solution to what is happening. Asking why #AutismSpeaks10 is viewed with such enmity by adults who are truly like our children because they share their neurology might be a better place to start.

Mu, autistic, out and about representing Charm City
On Purple day. Purple has become the only shade of
blue we endorse. Please note the absence of the puzzle
piece. ©Kerima Çevik
Our family never recovered from the shock of seeing Autism Speaks' "Autism Every Day" PSA, which is still branded with their logo and available for viewing on YouTube. We never viewed our son in this manner and it upset us greatly to have autism parents presented in this way. Having learned our lesson about the depressive effect that Autism Speaks can have on us, we now set a blistering schedule well ahead of time for the month of April to avoid the media bombardment of Jerry Lewis telethon style content that leaves us dispirited every Autism month. Shopping for school supplies, groceries, and a host of other things is a challenge during the month of April. Kudzu, I mean Autism Speaks, and their pervasive puzzle piece logo, meant to represent a piece missing from our children's brains? Or the unsolvable "mystery" of autism, or something? is in our faces. Tenth anniversary celebrations will only make their annual month long assault worse.

Autism Speaks came into our lives like kudzu, destroying and divisive to those it presents itself as being in the service of. The good news is kudzu is edible. And if the right species are planted to counter it, things like soy, peanuts, and peas, those plants will give back to the soil and allow native plant life to grow back.
kudzu starch cake,katori-city, Japan ©Katorisi Wikimedia
So how can we fight the kudzu spreading in autismland?

By continuing to insist that Autism Speaks stop inciting panic and hopelessness to control the autism conversation and raise money. It is WRONG. Speaking out even if they use their massive media control to counter. Continue to inform people about what Autism Speaks does and why it is wrong.

Continue to insist Autism Speaks include autistic representation. Autism Speaks needs meaningful autistic decision making representation. This means either a collaborative working partnership on equal terms with autistic run organizations that have equal representation in deciding autism policy and  issues that have a lifetime impact on autistic children and adults, equal representation on the board of directors, or both. The composition of its board makes Autism Speaks appear to speak for wealthy, cisgender, white, parents, grandparents and professionals who have autistic loved ones.

Don't allow Autism Speaks to continue efforts to mandate national Autism Policy as they see fit while excluding all other stakeholders: Autism Speaks must stop insisting on forcibly attempting to promote their own agenda by mandating autism policy alone. Autism policy, whether they like it or not, must be inclusive of all stakeholders including autistic voices and the voices of other organizations who represent autistic people and their families and care providers. This is not a corporate takeover. This is a cause and human lives are in the balance.

Reclaim Autism Month: Autism month should not be the personal fund raising self gratifying palooza of Autism Speaks. It should be a time when the full scope of what autism is, as well as how autistic people have always been part and parcel of our society should be on display. It should be a month for understanding, educating, and beyond awareness, it should be a time for demonstrations of acceptance, positivity and hope.

So please Autism Speaks, do not obliterate other voices with the ritual explosion of 10th anniversary chest pounding. We get it. You've leveraged a fundraising model that worked for Susan Komen for years. You're flush with funding and more is never enough. That doesn't give you the right to smash the voices of those you claim to speak for and torture them with loud, sensory overloading, displays of power that are dangerous to autistics. Tenth anniversary or not, for the safety of the autistics you claim to serve, tone down the over the top antics a bit this year.

My wish for #AutismSpeaks10 is that Autism Speaks makes a conscious decision to cease being the kudzu of the autism community and act to reinvent themselves into what they should be, a nonprofit that has true autistic representation and allows autistic voices, including those criticizing them, to speak their minds without being the victims of personal verbal attacks and abusive rhetoric by overzealous supporters. We could suspend reality for just a moment more and pretend that Autism Speaks lived with us in the United States and understood that autistic people and families who aren't Autism Speaks members, volunteers or supporters, like all other stakeholders, had the constitutional right to speak their minds about policies and practices that directly impact their futures.

Further, we could push this make believe scenario and consider that if all autism organizations looked for points of policy everyone agreed on, worked on a summit that united these points into an autism policy plan acceptable to everyone, then everyone would successfully advocate for said joint autism policy and the acrimonious nature of the autism wars might pause for a cease fire.

Wars tend to end with cease fires.


Thursday, January 15, 2015

Neurodivergence and Representation: People Maps and Farewells II

What follows now is an adaptation of a Facebook note entitled "The Year In Hope", the last of the series I posted on my now unpublished personal activist's page, because I think it says more of what I wanted to say here and I have too much to say. This will be my Part II of a Three part post featuring Leah Kelley's Magic Card People Map, a great accessibility tool that she writes about in "Gathering at TASH and The Magic People Map." Those who have expressed an interest in having cards for themselves can ask Leah about them at .

Before the debacle of Facebook's year recapping app forcing users to remember traumatic events of 2014, Facebook had their app for grabbing photos and recapping the timeline year active again. 2014 was a year I don't really wish to recap. The cost in lives of disabled children and the human rights
Ariane Zurcher, writer, speaker, artist,
activist, mother  and ally of Emma
Zurcher-Long. Ariane embodies the
community building autism parent by
tackling tough topics and giving the podium
to her daughter to speak out about
nonspeaking autism and representation

losses are just too high to celebrate. I will be on hiatus from activism for at least part of this year. So I'm continuing the
 people map of some of those dedicated folk I think should be recognized for selflessly standing up for what is right, and the stalwart parent allies who stand with them.

There is something very important that I am asking of everyone of you. whether your activism is all online or you are community organizing, marching in protests, or standing in congressional offices and trying to make things right, please don't think about political expediency, tactical advantage, career opportunity, or personal gain . Think about what you are fighting for.

There are turning points in activism where people must  choose between their own ascension, the message they are meant to convey in order to drive change to those they advocate for or represent, and political expediency. Sometimes the internet results in a dichotomous environment where these moments of moral truth are not just sharper and more immediate. They are painfully public.  Stand for the truth. Be brave. Even if you stand alone.

Adriana is a living example that highly
ethical, highly qualified care givers
can be allies against ableism in the truest sense.
With Adriana's dedicated support, Amy Sequenzia
 is able to balance a busy life of activism with
self care and engaging our community
 Without deconstruction of falsehood, change is not possible. Without criticism (even of those who
may be somewhat beneficial to causes but are flawed in a way that damages in the long run) there is no moving forward. If we are afraid to call people and organizations out when they display shortcomings that have the long term potential to harm progress towards justice and equality inclusive of all, then what we live in is  no longer a democracy and we are all lost.

My hope at the beginning of 2014 was that we all became braver people. We need that embodiment of true courage. For those of us who are parents, I hoped  we might demonstrate by example that the true meaning of parenting is finding our own way to accept allowing our children to grow up and age with the supports and accommodations needed to live autonomous lives. What I have seen is a year in which too many systems online and offline exist that perpetuate the gaslighting of parental attitudes about what disability is and what the struggles of parenting are. So many negative groups online have influenced the attitudes of parents and care providers that crimes against our children have  increased and a victim's disability is always used after horrible crimes to justify them. Hundreds of social media groups, web sites and blogs, present such horrifically negative views of what parenting and caring for neurodivergent loved ones means.  Readers who are already sleepless, clinically depressed and seeking solace instead find large populations of similarly clinically depressed parents escalating despondency. The danger in such groups is they foster behavioral and emotional contagion.

Need an example of emotional contagion? Remember that 2014 was the year of the disclosure for the infamous Facebook newsfeed psychology experiment? The researcher manipulated the newsfeeds of about 1 million users in an attempt to manipulate the emotional contagion of users and drive happiness or melancholy. People have a tendency to converge emotionally. The worst example of this is the fixation of Jillian McCabe, the mother threw her beautiful son London McCabe off an Oregon bridge, with that infamous scene in the horrible Autism Speaks movie "Autism Every Day". She wrote that she really identified with "Alison Tepper Singer who contemplated driving off a bridge with her autistic daughter Judie Singer."

 My hope is that whether I am an activist or not, our community takes on the critical task of deconstructing the emotional contagion of these negative content generating organizations and groups.We should be teaching everyone to recognize the signs of clinical parental depression, emergent dangerous thoughts,  unstable emotional states due to chronic sleep deprivation. We need to spot the red flags apparent in certain parent support groups and keep them from instigating harmful behavior towards disabled people.  I pray everyone understands this and if groups are anyone's forte, they begin a wider grassroots building of groups that make it clear that our present views on disability in general and autism in particular are being imposed upon us and what we need to do is begin with understanding how this ableism permeates our lives so we can first keep our mental health and then help attack the true causes of challenges to parenting neurodivergent children: special education systems that aren't working, disparities in what should be a multidisciplinary one-stop care models for meeting the
Emily Titon is an autistic activist for disability
rights, human rights, and social justice. Emily
sits on the boards of several disability rights
organizations and can just as easily be found
community organizing for transformative change
Her work on the exposure of the JRC is a typical
example of excellence in activism.
lifelong medical, dental and vision needs of disabled community members, and research and technology investments in adaptive supports and accommodations that will allow universal design to fulfill its true purpose:  to be inherently inclusive of accommodation by design for disabled people, the world's largest and most underserved minority.

We need to think about how each organization that claims to advocate for our children is actually doing so. How far will they go to help our children? Do they have significant leadership representation of people like our children, regardless of degree of apparent disability? Because only those people, intersected, of our children's races, religions, ethnicities, gender identities, and sexual orientations will understand what life is like for them now and be motivated to drive change for them. Unless you have lived as an autistic adult, how can you possibly know the gaps in adaptive communities, education, health care policies,  or the research needed to significantly improve the quality of life of autistic children when they become adults and age?  So we do need to give the podium to those who represent our children and allow them to tell us what those critical obstacles are. Before it is too late.

The case of Reginald Cornelius Latson is a crucible for representation beyond the disability nonprofit industrial complex. How have organizations who claim to be diverse disability rights advocacy organizations responded to four years of harm done to Neli?
Lei Wiley-Mysdke is the founding curator
of the Ed Wiley Autism Acceptance Lending Library
A community building effort to educate and
empower both the autism community and the
general public on neurodivergence 
Remember that Neli was able to move freely and without supervision in his community before this catastrophic encounter with police. This should have every organization and activist thinking that whatever went wrong, it was not wrong with a young man who had no prior criminal history, no record of aggression in school, and a diagnosis of Asperger's  given much later than other children, even those of color. So with that understanding, we must think of what was done to him that triggered crises and permanently damanged his mental well being rather than simply anthropomorphizing autism itself. Are organizations informing their members that the DOJ had already brought suit against the State of Virginia for their treatment of prisoners like Neli? How are your favorite organizations responding here? Did you only hear of the Latson case recently or not at all? That should tell you how they will treat your son or daughter should they fall afoul of the criminal justice system. Know who you are supporting before your fundraise, buy hair dye and run that 5k.

Back to that hope that people speak the truth without fear. Fear silences. Look at what is happening
Beth Ryan is a parent activist and example
of a transformative community organizer for
good  with healing efforts such as the online
 support group Parenting Autistic Children
 With Love And Acceptance,  
right now. A woman is shot, two police officers are shot, and this tragedy is being leveraged into a way of forcibly silencing

calls for police reform and judicial review of a whole host of incidents in which deadly force was misused and injustice was done. The wrongness of that is nauseating. Redress, transparency, and accountability are what make a democracy. Any attempt to smother criticism of public servants by the public who hire them is a red flag that all is not right.  My hope is that when a truth needs to be told we don't do what is done in special needs circles too much: that is we don't think of only our children's political advantages and abandon the chance to move forward as a community. One voice, regardless of how many connections it has and its individual fame, is small and ultimately dependent on those who follow it. Fame is a fickle mate. Aim to gather community and make it strong. If everyone in our community sees the emperor of ableism points at that narcissistic wrong and shouts "The emperor has no clothes!" even those who survive by kissing the emperor's arse can no longer deny the truth of its wrongness exposed. So don't hesitate. Make our world better. When you see a wrong say so. Don't do the math to calculate an advantage for yourselves.

Remember the KONY 2012 guy Jason Russell? He did what many autism advocates end up doing. He allowed the brief media spotlight and sudden intense popularity to make him more important than the cause he championed.  That led to disaster. Sadly it was never about him. It was about the invisible children. And he went from making a difference to making everyone forget about what he was fighting for. Don't be that
Dr. Anderson-Grace is an autistic academic,
educator, activist, and board member on disability
rights organization. One of the founders of NeuroQueer,
she represents a movement that commands representation
and unity in intersected populations within our
community such that even her brief involvement
in community results in transformative change.

We are fighting for the human rights and civil rights of our loved ones. We are fighting for their equal representation in the society we live in. We are not looking for a segregated life on the fringes of society. We want our children to be respected as they are and given the tools they need to live in the society we live in. The minute we forget what our purpose is we are lost. I've seen it too much this year. Don't let the next victim be you.

My last hope and wish is that everyone work to build a new autism community. This can be done so simply and online. Know the numbers for all your local help agencies. When someone says they are hungry, have no shelter, need to an ear, give them crisis hotlines and food banks and shelter addresses and true help. Resources in the internet age are so easy to find but so few who are in need know about them. This is what I've always meant about pay it forward activism. If you help someone, tell them to remember and help another family or person. Whatever is in a person's ability to accomplish to help other members of our community, that person should try and accomplish it. It would make such a great difference in the lives of autistic children and adults. This is the antidote for the hundreds of groups out there on the web where parents trigger themselves with repeated stories of how they are suffering with their kids and how hopeless and without a future things are until someone decides it is okay to murder their own disabled children. The only genuine antidote is a truly united, diverse, inclusive community. I feel I have failed my part of the task to light a spark to build an online version of it. Maybe all of you can succeed where I have not. But you must begin with community concern beyond personal concern. Make sure your children and family are well. Balance your time so your mental health is in great shape. Then reach out and join with others to help make things better.


This is the end of Part II.  The final section, Part III  is next.

Mentions links etc.

Leah Kelley's Magic People Map Card info can be found above by mousing over Gathering at TASH and the Magic People Map. Inquiries about acquiring cards for your event can be obtained by commenting on her blog 30 Days of Autism:

The Autism Parenting Positivity Group Parenting Autistic Children with Love and Acceptance can be found here:

Ariane Zurcher and Emma Zurcher-Long's joint blog, and ongoing chronicle of autism positivity in parenting and autistic self advocacy for autistic tweens and teens who use AAC to communicate can be found here:

Dr. Ibby Anderson -Grace's blog Tiny Grace Notes - Ask an Autistic, for parents with questions for autistic adults who are also professionals, academics, and topic experts can be found here:

The Letters to Autistic Kids Project, founded by Dr. Ibby Grace and Leah Kelley, can be found here: 

Lei Wiley-Mysdke is the curating founder of Ed Wiley Autism Acceptance Lending Library, for information:

Questions for autistic activist Amy Sequenzia and Adriana about building long term friendships with mutual respect between disabled activists and care providers, supported typing, and balancing the livea of active disabled people with complex health management can be addressed to Amy Sequenzia and Adriana through Amy's website:

The further adventures in activism of Emily Titon can be followed by following her on Facebook or twitter @imnoteamplayer, or Googling her. Here she is in  a Boston Globe article with Cheryl McCollins, the mother of JRC torture victim Andre McCollins.