Tuesday, June 16, 2015

Autistic Girl Dangerous: When Big Magazines Promote Perilous Stereotypes

Our autistic son at a younger age expressing
"Oh No She Didn't!" Without Speaking © Kerima Çevik The Autism Wars
 I'm really disappointed with the editors of Good Housekeeping magazine. They managed to find an egocentric blogger to produce a self gratifying piece on why she'll never have kids. It was as self important as can be expected from the title, "Why I Couldn't Care Less About Having Kids".  I'm sorry I won't be linking to it in any way; it is traveling round social media. But that isn't what is bothering me. I'd normally dismiss such an article, even on a platform as large as GH magazine. Unfortunately the article includes the following paragraph:

"In my early 30s, I worked with children with autism for my Master of Social Work degree. I was assigned to work one-on-one with a 7-year-old girl who brought the violence and pain. Like a thug out of a Martin Scorsese flick, she held a pair of scissors up to my neck then attacked me with a tambourine. She'd ask for hugs then head-butt me. I terminated our relationship after she picked up a bean bag, tossed it back and forth, looked me square in the eyes and hissed, "Finally, I get to bash you now."

 "Between processing transference and countertransference issues with lil' Joe Pesci and years attending Adult Children of Alcoholics meetings where I learned if it's not one thing it's your mother, I came to realize it's not the children that I hate. My feelings were merely a symptom of growing up too soon."

I can't imagine the trauma this child went through to end up assigned a social worker and feeling she must defend herself from the  social worker candidate meant to help her.

Children should not be put at risk to add snarky bits to writing
 I have discussed the wrongness of disclosure of private health information, especially regarding young children, for edgy internet content, attention seeking or shock value.  I call it Digital Exhibitionism, and apparently parents aren't the only people tempted to flash the private lives of vulnerable children at everyone for hits online. Using any part of one's casework load for entertainment value of any readership is low and unprofessional, even if the author was a masters degree candidate at the time.

Promoting the trope of autistic children who are in a perpetual state of raging violence for  entertainment is bad enough. But including the word thug to describe a 7 year old girl whose maximum body weight might be roughly 50 lbs, then making comparisons with violent characters in mafia movies is not just unacceptable it is dangerous. (I hope, I truly hope, that she did not select the word "thug" to imply this child's race. Because if she did I will be finding a way to file a legal complaint.) If the author is an indicator of social worker standards here our society is doomed. There is no ethical compass here. Her young client, for whom she needed to provide assessment and generate therapeutic and support resources has been compromised and made a cautionary warning of why someone would hate children in general, and autistic children in particular. I am the mother of a nonspeaking autistic son who is already targeted enough without large magazines like GH allowing material like this to make him an even larger bullying and hate crime target. This is unacceptable and disrespectful to an entire community, to the social work professionals who don't disclose their "adventures" with caseload clients for their own gain, and to the autistic girl who is probably in her teens now and perfectly capable of reading this and putting two and two together.

I won't be asking GH to take it down. I am instead asking all of you not to share that  Good Housekeeping article on social media. Do not allow it to gain hits or become a topic of debate anywhere. This author shouldn't get to gain notoriety to make things worse for others by using our anger at her lack of professional ethics and her vicarious slap at our loved ones. I don't want to see her interviewed because we made her relevant. What I would like to see is an avalanche of open letters to Good Housekeeping about how they screen and edit their articles and ask that they don't approve articles that promote dangerous stereotypes of autistic children that can instigate further harm against them.

I am always sad when I see people given the privilege of a huge platform squander it on snarky, inane, writing that could have been helpful to so many by getting to the point with stronger rhetoric; she was the child of a substance abusing parent and she apparently was trying to address how ending up a child parenting an alcoholic adult and having to become the defacto mother of her younger sister dimmed her interest in parenting as she kept seeking ways to recover a childhood she felt she was deprived of. Why she needed to invoke the trope of the "evil autie child" God only knows. I'm trying to maintain my composure because I don't want to be her. She is part of a greater problem I've been writing about for a very long time. Someone who takes a person at their worst moments and skewers that person for the pleasure of a wider digital audience. We must find a way to address the problem itself and end it, rather than try countering every irresponsible opportunistic human jumping on the autistic child bashing bandwagon. And yes, those people have to recognize that careless words on a page can lead to harm for disabled children.

I love my autistic son, all his curves and edges, all his perfect imperfections as John Legend sings. I'm sick as hell of random people who are supposed to have the professional training to know better dissing those who share his neurology. It needs to stop. Now. It is up to our community to speak up but target those who decide what content is published. Digital Exhibitionists will always look for a virtual public park to stand in with their hands on their coats waiting for a good audience to flash.

Let's stop being part of the knee jerk process that gives them this power.

Resources and additional reading  for parents and educators:

"I Was One of The Scary Kids"

A Checklist for Identifying Sources of Aggression


ASAN Statement Refuting Media Claims Linking Autism and Violence

Autistic Academic on Media Misinformation and Negative Autism Tropes

Tuesday, June 9, 2015

Standing At The Intersection of Adolescence, Race, and Disability

Police badge, credit Wiki media commons
This post may wander a bit. Recent events have made me  very emotional, shocked and sad.

Our son is twelve.  His father, sister and I have spent a major part of his life trying to meet a single goal before his thirteenth birthday. We have been trying to insure he is equipped to survive his adolescence without being killed in a catastrophic encounter with police. He has been fortunate, and so far, safe. But recent events make it clear that we must act in some way to change the way things are or chances are, he may not be safe in the future.

When I realized that roughly 70% of people with disabilities encountered law enforcement more than once in their lifetimes, learned how many were victims of abuse and crime, and how many disabled males of color died in such encounters, I went to Annapolis to ask for an autism training bill for first responders. I later came to the realization that the training concept is inherently flawed and limited in its success.  For police officers in particular, training them in awareness of autism and how someone autistic reacts to sirens, strobing lights, and people shouting at them wasn't the solution to the problem of keeping our son and his nonspeaking peers from accidentally being shot or wrongfully arrested in a police encounter.  Particularly for autistic and other neurodivergent males of color, police training in other states did not deter or reduce catastrophic encounters. Understand that  Freddie Gray was diagnosed with disabilities resulting from lifetime exposure to lead paint poisoning common to the low income housing in West Baltimore. Freddie Gray was neurodivergent. His death is not counted as a Black disabled catastrophic encounter death but it should be.

 I have recently realized I must accept the idea that just about the only way to insure our nonspeaking autistic son isn't harmed is instilling in him that he must avoid police as much as possible.

The only legislative goal that will reduce catastrophic encounters with law enforcement for neurodivergent males in general and neurodivergent Black and brown males in particular, is legislation aimed at not placing them in the path of police to begin with.

I never thought I would have to consider how to teach my son to avoid police.  But there is no denying that recent events demonstrate race relations in this area of modern socieiy have reversed 50 years, and we are now living in a dangerously polarized country. So here we are with our sweet son, standing at this intersection of racism, ableism and disability. We are looking for breadcrumbs we can leave to aide him in preserving his own life  and the thought is frightening. So frightening that I can say the only thing that frightens me more is the rising number of autistic school children being arrested for school infractions and forced into the criminal justice system .

How do we teach him that the safest way to deal with law enforcement is to avoid engaging them at all?  Even if he needs help. Even if they seem kind and appear to understand he is unable to speak. Despite anything he's been presented by well meaning people who don't know what it means to be a Black man in America. Because if he meets a good cop one day, he may meet the one that hates him the next, and that could end his life. Too many others have died because they could not speak and were not provided with the means to respond when police ordered  them to do so.
The bullet-riddled windshield of Timothy Russell's car shows where some of the 137 bullets fired at the car police fired at the car landed. (credit: Marvin Fong/The Plain Dealer)
One of my main goals for the remainder of my life is lowering the odds that my only son will die  by pushing our community to rethink what the role of law enforcement should be in our lives and to support efforts to remove law enforcement from inappropriate roles in the lives of autism families so we are able to  avoid police engagement as much as humanly possible. I am tired of watching our people die.

We are traumatized and tired of being helpless witnesses to the lives destroyed and lost in such encounters.  Freddie Gray,  Matthew Ajibade, Tario Anderson, Rekia Boyd, Tamir Rice, Aiyana Stanley-Jones. It is the list of the dead and injured that just keeps getting longer by the month while the criminal justice system keeps failing them and our entire race, first by allowing them to come to harm, second by allowing those who harmed them to not be made responsible for their actions, and third, by  blaming the victims in order to absolve the perpetrators. I continue to repeat that even someone who is suspected of committing a crime has the right to be safely arrested and tried by a jury of his peers. Police are never supposed to be executioners.

Knowing that police officers who sully the uniform will not be held accountable for any wrongdoing, regardless of how much evidence of their guilt is apparent is soul destroying. We've been swallowing this bitter bill for my entire life. It is a spiritual struggle  to continue to defiantly declare one's right to exist and human right to humane treatment knowing this is true. Here is one of endless examples of justice denied.

Cleveland police officer Michael Brelo mounted a car that 5 other police officers had riddled with bullets after "confusing the car backfiring with a gunshot"  and continued shooting down into the the windshield of said car until the two already wounded victims, Malissa Williams and Timothy Russell, where dead. Officer Brelo was acquitted of any wrongdoing. 137 bullets were not, in a judge's opinion, excessive use of force.  If you believe that compliance of a traffic stop would have changed the conclusion of this encounter, then you are deceiving yourselves. If, the moment the car backfired, the knee jerk reaction was to shoot with impunity,  this act was driven by the presumption that Black suspects are dangerous criminals who should be shot. That is racial profiling. Which makes this a hate crime. This was never going to be an arrest. It was an execution.  Understand why we fear for our son. If you don't understand and don't act to help everyone fighting to change this deadly sequence of events, many more will die.

This week the Supreme Court ruled in favor of San Francisco in the case of City and County of San Francisco v. Sheehan, overturning the decisions of all lower courts and placing all disabled people at risk. Specifically they ruled that police who forcibly enter a premises and shoot a mental health patient have qualified immunity from litigation. This sets a legal precedent that weakens ADA protections despite the court's attempt to bypass the impact on ADA issue, and enables more excessive use of force when dealing with neurodivergent people in general and mental health consumers in particular.

I have already pointed out  here  that both Paul Childs and Stephon Watts were shot dead by police officers who had autism training, knew them, and had even helped them in the past. A police officer being familiar with your son's autism, knowing your son doesn't use verbal speech, being trained to approach and manage neurodivergent people doesn't protect them from being shot by those very police officers later on.

Jurors in the Danziger Bridge trial in 2011 went to the scene of the shooting
 to get a firsthand look at the spot where New Orleans police shot
and killed two unarmed people and wounded others five days after Hurricane Katrina.
(Michael DeMocker NOLA.com | The Times-Picayune)
If I seem pessimistic about what is happening it is because even in cases where video evidence of wrongdoing supports witness accounts,  and even in cases where convictions are handed down, inevitably, as in the Supreme Court decision in San Francisco v Sheehan, justice eludes the victim. The conviction of the New Orleans police officers who shot among others 40 year old autistic Ronald Madison and his brother Lonnie, who was trying to walk him over the bridge and out of New Orleans after Katrina, was overturned and they have now been granted a new trial. We all know these men will never see prison. Ronald Madison was a gentle person, loved by his family and neighbors. His brother refused to leave New Orleans without him, and remained behind to help lead Ronald out after the storm because he didn't understand why he had to leave his home. It seems now that no one will ever answer for the innocent lives taken that day either.

If you ask my opinion of possible solutions to keeping our autistic offspring of color safe by avoiding unnecessary engagement with law enforcement, I'll respond that I have a list. Here is part of that list

1. Retrain 911 operators to clearly distinguish the difference between a mental health crisis call and a law enforcement call. Do NOT use police officers as mental health support staff to transport MH consumers in crisis to help facilities. 

2. Train parents to properly request an ambulance and mental health crisis support; train loved ones and care givers not to call police unless a weapon is involved.

3. Remove the use of police and school resource officers (SROs) from the chain of school discipline and prohibit the profiling of disabled K12 students through files maintained by SROs, as they are neither qualified psychologists or psychiatrists.

4. Block school administration from calling police to arrest students for school related infractions and fine them if they do so. This holds them accountable for not providing staffing support for disabled students who require it.

5. Insure that any incident involving the arrest of disabled students is automatically reviewed by that state's department of education's office of civil rights to assess the degree of violation of the student's civil rights and insure the student is provided with properly trained classroom  support staff per IDEA .

6.  Establish grass roots mental health crisis support teams and  peer run respite and crisis centers for MH consumers. This will increase respite for for MH consumers and families, averting  crises where police might be called to homes or schools for interventions outside the scope of law enforcement                                                                                                                                                                                           .

I must continue my efforts to find a way to explain this all to my son and together we must insure that even after we, his parents, are gone he knows how to survive as a nonspeaking  neurodivergent male of color in this increasingly corrosive world of hate.

God help us both.

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