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.

Sunday, January 4, 2015

Neurodivergence and Representation: Magic Maps, Musings, Farewells 1

The magical Leah Kelley blogger, speaker
educator, awesome parent of H
Leah Kelley, who blogs at 30 days of Autism, created an amazing people map for her son, H, who shows every indication of becoming a great voice for the next generation of autistic adults. She writes about it in her post Gathering At TASH and the Magic People Map. Leah has been kind enough to let me use her people map to feature some of those voices who found creative and out of the box resources to help afford the trip to Washington D.C., speak out, and participate for those they represent. Read about them while I try to gather my thoughts on various points regarding divergence in neurology and representation. I'm going on a hiatus, a sabbatical if you will, and narrowing my focus. I'm not quite sure how it will all work out. Hopefully placing this beautiful map of people cards throughout the post will help outline a path for my thoughts on where I am now and how to move on from here.

Leah's deep love and respect for her son H, her strong background and experience as a special education teacher, along with a keen understanding of what supports divergent people need to navigate public spaces, shine in the concept of these cards and made her latest great idea very much worth sharing. It is the definition of what autism parenting with love and acceptance entails.

30 Days of Autism  also hosted an excellent quick assessment of  the TASH 2014 conference from Cara, who blogs at That Crazy Crippled Chick, and you can read about that here. I actually recognized Cara from the I Am Norm Campaign's first Youth Summit! She has gone on to graduate school and outstanding activism.

My son Mu. My living example that nonspeaking
autistics deserve the same respect that the rest of
 the spectrum is fighting for
The Bad: I do want to be clear about my frustration at my  failure to bring about what was to be the most important contribution I could have made at TASH. I wrote about that on the I∩tersected blog, which you can read here and I may expand on it when I hurt about it less. My main job as a parent activist who works to be an ally is to use my parental privilege to create opportunities for disabled disability rights activists representing marginalized groups to be able to take the podium and speak on what matters to those they represent. My being there, or me being able to speak for or in place of two great activists who were Black and disabled was never the goal or the point. Had I wished to address people alone I would never have asked them to join me.
I was unable to garner the support to succeed in helping two important disabled activists afford the cost for the accommodations and supports they needed to have their voices heard at TASH 2014 in the moment when harm to disabled people of color needed to be spoken about the most. It was the latest in a series of events that marked my decision to withdraw from everything except blogging. I am now simply a blogging autism parent.

I realize now that the organizational aspects of disability rights activism as they are currently structured, are constrained by the same institutionalization of privilege, hierarchal discrimination based upon degree of disability, layers of intersecting factors which are othered by organizations lacking equal neurodivergent representation, and the racial discrimination that is polarizing our country in general. The voices of marginalized groups within disabled populations are already muted  (as defined in muted group theory by E. Ardener,  S. Ardener, C. Kramarae, and M. Orbe). Institutionalized disparities in representation and support for marginalized subgroups in disability advocacy made my task as an independent activist seeking grant funding for direct support of disabled activists who advocate for said groups impossible.

Me, retired activist, glasses perched on
on the end of the nose I inherited from
my ancestors, proud mom to
neurodivergent Mu.
These recent events, combined with what I have experienced over the past few years when trying to seek help for our son or other intersected neurodivergent individuals in need, have brought me to the point where I feel the need to step back from activism and try to work out fresh approaches to how intersected people of color can be fairly represented beyond tokenism and appropriation of content and ideas. I  also see sharp differences between how individuals in the dominant religion and those who speak for populations with high incidence disability are responded to when they reach out to our community to request assistance for themselves or others and when activists for marginalized groups request the same help and support. I therefore don't see any point in pushing against this wall of discrimination alone when such effort is unnecessary for those who fit a more acceptable intersected constellation. That privilege of limited intersectionality achieves whatever outcome they wish. I'll expand on this later as well.

I truly believe that with the exception of neurodivergent families of diverse races who conform to the dominant culture in every other way, the autism conversation will continue to be dominated by white privileged parents with the financial means to provide ample supports for the 'therapy' and education of their children. We will continue discussing what those children need and policy will be dictated by that group rather than by neurodivergent adults whose needs are underserved or heavily intersected populations who are both underserved and overshadowed by the dominant group. This is true across organizations. If someone of color is in a decision making position, that person must be from a class position that disassociates itself from those in poverty and silently allows the dominant voices to dictate autism policy, because when they have reached a place of power, they tend to forget that their true purpose is to serve their people. Instead they stay silent and do as they are told and think of their own gain. They justify this by the old myth that somehow they must accept the role of token in order to make history so that others can follow.

The Good: A chance to meet and have lunch with the next generation autistic disability rights voices was a great gift
H, son of Leah Kelley, autistic activist,
speaker, student and incredibly cool dude.
during the brief moments I was at TASH.  Henry Frost was unable to attend, but his example and presence were felt. Renee (see magic people card after Emma's  and Henry's below) invited me to lunch with her wonderful kids and H.  As we were having lunch with these amazing young people,  a great deal of self doubt and self loathing, the self directed ableism that haunted previous generations of autistics, was not there. Both speakers and typers were at peace in their own diagnoses, and this more than anything made me feel the online community may be having a direct positive influence on the new generation of tween and teen neurodivergent youth. This confidence and comfort with who they were, the relaxed way in which conversation flowed from neurology to gaming, from there to interests of the moment was uplifting and almost made my bitter disappointment with the underrepresentation of diverse voicesat the conference itself dissipate.  While we were having lunch I realized that a group of African American disabled activists were having a working lunch and discussing strategy for what was clearly their panel which would be occurring after lunch. Roughly 10 to 12 activists sat, ignoring everyone else in the retaurant. An opportunity was there to gain community involvement in their panel and simply network. It was heartbreakingly sad that their self imposed isolation was happening when we were all there, smiling and more than willing to listen had they reached out to us. But that is the state of activism now. We, activists of color, are burnt out and tired of a great deal.

Emma Zurcher-Long,  Autistic Activist,
Performer, student, advocate for non-
speaking autists who type to communicate
I recently ran across a trailer to an upcoming documentary on autism that begins at a short conversation with Temple Grandin. Because we have not reached a moment where our community has true representation in it, documentaries about autism will always have Temple Grandin in them, and will in many cases mention the movie "Rain Man" when discussing level of visible divergence. So Dr. Grandin states she is concerned about what she terms "too many smart kids, on the real fully verbal end of the spectrum, all they want to do is talk about their autism." Apparently, they spend more time discussing their autism than they do discussing their intense interests. I would say that it is a good thing that autistic youth discuss autism since their autism is part of who they are. It is quite impressive to me that young people know themselves well enough to discuss their support and accommodation needs, how their diagnoses give them advantages and challenges, and feel comfortable doing so. In fact Dr. Grandin has made a serious amount of money and gained great fame talking about her autism and writing her opinions about autism, when autism is not her area of academic specialization but is in fact part of who she is. So I was a bit surprised at her statement of great concern. If autistics start directly discussing their neurologies at such young ages, they will be able to advocate for themselves and others without self doubt or shame. That self advocacy is the goal, and a giant step towards having them direct the autism conversation and by doing so, direct their own futures. Reaching such a goal would give voice to hundreds of individuals across neurology,  rather than the present narrow field of voices limited to well intentioned autistic 67  year old Ph.D. s of animal science speaking in such a way as to obliterate the voices of those who type to communicate.
Henry Frost - Autistic Activist,
student, advocate for full inclusion, public
speaker and activist for non speaking autistics

Meeting some very confident young people at TASH left me hopeful despite my sadness for my own people. I would think Dr. Grandin would be proud of young people who self advocate about their own neurologies. Her statement also excludes very young activists who type like Henry Frost and Emma Zurcher-Long, able to communicate eloquently at such young ages with AAC support. Her insistence in seeing the future of our community only in kids on the spectrum with verbal speech when such powerhouse young typing activists are making names for themselves is not just sad. It is a very good example of hierarchy of disability by presumption of competence based upon what is visible rather than what is possible. Independent young typing activists leading their own generation are the role models for nonverbal autistic presumption of competence. Dr. Grandin speaks as if there was never a groundbreaking documentary called Wretches and Jabbers that changed the global conversation about communication and nonspeaking autism, and as if Naoki Higashida never wrote "The Reason I Jump". The reason Emma Zurcher-Long is a public speaker (note the word speaker meaning communicator - she types through most of her presentations that is her primary communication method) is because of the impact of these nonspeaking people.  Probably one of the strongest voices in our community is Amy Sequenzia who also communicates by typing. Dr. Grandin is a privileged
Amy Sequenzia, Autistic Activist and
Poet, advocate for nonspeaking autistics
users of AAC to communicate
voice in our community and she sets up an ableist hierarchy of disability, immediately feeling the need to insure that the listeners understand that she's excluding nonspeaking children when she discusses "the really smart kids". If she has this ableism, and she is speaking to audiences filled with parents hoping to learn something to help their children, what is she teaching them about my son and his peers? I have no soapbox that will equalize the reach of my voice and allow me to counter such ingrained prejudice. Her fame has given her a large platform but she is using it to segregate autistics who type or need supports to communicate from those who appear to have verbal speech and may not require supports in the classroom or have less visible expression of divergence in neurology.  I've tried to counter this attitude, with little success. I now need to step back and think of new ways to approach these kinds of tremendous obstacles within our community in addition to continuing my son's homeschooling and fighting the wars we must fight for representation of our loved ones outside it.

Renee orchestrated lunch with young autistics
as a conductor would a concert. 
I am also sprinkling this small gift to you of magic cards of people as I write, because the people in them are so dear to the autism wars for driving representation beyond acceptance and the incorrectly used "awareness" term. They give hope to our community because they lift others up rather than simply promoting their own careers in disability rights advocacy or activism. They act with the community in mind. They are refreshing voices in a sea of self serving organizations crushing those they are pledged to serve underfoot while wondering why the very members they harmed are not building community or volunteering for them any longer. I'm doing this so that should someone happen upon this post while I'm gathering thoughts and on my hiatus, they can google and find their way to the words and works of said folk, and learn from them. I want them to share my joy and marvel at strong voices in the very young and the not so young. I would like to see tweens and teens of diverse constellations on similar cards next year. The internet has strong neurodivergent poets, artists, graphic artists, singers, and authors, who are incredibly young. Others were around when Ari Ne'eman was too young to know what his future would hold. Please learn about these people, learn from them and tell them your stories so we can hear your voices and learn from one another. I hope the cards give everyone heart, make their burden's light and guide them towards the understanding that whether my voice is here or gone,  the potential for a powerful community in the neurotribes is strong,  can be united, and if united could overcome any obstacle.

In case you missed the link in the first paragraph 30 Days of Autism can be read at (

This is  the end of part one of a ridiculously long post divided into three parts.  Part II is next

Saturday, January 3, 2015

Facebook Notes Series: My Standing Position on Facilitated Communication

Originally Posted on author's Facebook Page, April 21, 2014

Facilitated Communication, or FC, is the memorial whipping post of autism. An easy target to malign because fraud is always big news; many who do so are not aware that they are falling into an ableist point of view because said criticism is founded on the presumption of the incompetence of the user of this method as AAC support.

My issue with FC criticism is that medical malpractice is more frequent and widespread than FC fraud, but we don't discredit modern medicine, and we don't tell people not to seek medical help. Psychiatric fraud and malpractice are more widespread, but we don't discredit the practice of psychiatry. In fact one of the most devastating chapters in autism history was Bruno Bettelheim and the entire psychiatric community insisting on legitimizing his dissemination of the unfounded "refrigerator mom" theory of autism ( "although [ Leo] Kanner was instrumental in framing the refrigerator mother theory, it was Bruno Bettelheim, a University of Chicago professor and child development specialist, who facilitated its widespread acceptance both by the public and by the experts in the medical establishment in the 1950s and 1960s." - Wikipedia).  An entire generation of mothers and their autistic children were irreparably harmed, all from a concept that was horrific, because the psychiatric community was not held to account for what the man was doing simply because of his professional label.

Cases of FC fraud should prompt the kind of response fraud in any other human services area does; that is a call for stringent standards and vetting for facilitators. It should not (based upon the presumption of incompetence of the nonspeaking participant, which isableist) be thrown out. Situations like these are why the cliche "throwing the baby out with the bath water" was created. Articles critiquing FC  facilitators should be doing just that. Not attacking the method, but shedding light on how important it is that standards be set for those facilitating, just as standards are set for quality of all those assisting and providing support to individuals in our community.

1. Presume competence of nonspeaking autistic individuals. Sue Rubin, Jamie Burke, Amy Sequenzia , Sharisa Kochmeister and countless others show us that the ultimate goal of assisted typing can be achieved though reaching that goal may take years.

2. Critique the fraud by all means but realize that malpractice and fraud are rampant and this should never prevent a method from being explored or applied. Celebrate the successes of this type of AAC as well.

3. Call for better quality standards in managing those who are trained to facilitate. Because the consumer is a nonspeaking one, it is important that strong self advocacy skills be established in the consumer as well. Be part of a solution. Improve the lives of nonspeaking people, don't take away the legitimacy of their speech support and marginalize them. There is a great deal of room on this giant ship of autism. Let's let everyone get onboard.

This post generated 56 shares and 87 comments. I will try to add some of the comments which were posted references below.

American Speech-Language-Hearing Association. (1994). Facilitated communication [Technical Report]. Available from [Particularly important are The Final Recommendations: and Appendix 2: Minority Statement to Technical Report on Facilitated Communication and Response from Subcommittee Chair] Accessed 25 April 2013.

Bailey, Judy, 2006, Dealing with Silence and Coming Out of Silence,, Accessed 30 April 2013

Bailey, Judy, 2007, Slides from a Presentation given by Judy C. Bailey, M.Ed.,at Ellensburg, Washington, Summer 2007,, Accessed 30 April 2013

Bailey, Judy, 2005, Thoughts on Facilitated Communication Training (FCT): What If…?,, Accessed 30 April 2013

Brandl, Charlene, Sometimes It Can Be Hard to Believe, Grandma Char and lessons learned, 25 March 2013,, Accessed 17 April 2013.

Brandl, Charlene, Why I Do What I Do, Grandma Char and lessons learned, 11 January 2013,, Accessed 17 April 2013

Crossley, Rosemary, Issues of Influence: Some Concerns and Suggestions, Facilitated Communication Digest, Vol.1 No.3 (May 1993) [pp 11-12], reprinted at Institute on Communication and Inclusion, Syraceuse University Accessed 23 April 2013.

Crossley, Rosemary, Literacy and Facilitated Communication Training, Facilitated Communication Digest, Vol.1 No.2 (Feb 1993) [pp 12-13], reprinted at Institute on Communication and Inclusion, Syraceuse University Accessed 23 April 2013.

Crossley, Rosemary & Borthwick, Chris. 2002, "What Constitutes Evidence?" Presented at the Seventh Biennial ISAAC (International Society for Alternative and Augmentative Communication) Research Symposium, Odense, Denmark, 2002, Accessed 24 April 2013.
Fransden, Mike, Examiner Health & Fitness, 9 October 2010, Facilitated Communication (FC) enables non-verbal people on autism spectrum to communicate by typing,, Accessed 16 April 2013.

ASHA Practice Policy - Browse by Topic
Below are the official documents of the Association related to a particular topic. You can also browse documents by year and by type of document.

Jasuta, Stephanie Sherbel, Speaking Up for People Who Can't Speak, Blogging Authors, Guest Post,, accessed 16 April 2013.

Tuzzi A. (2009). Grammar and Lexicon in Individuals With Autism: A Quantitative Analysis of a Large Italian Corpus, Intellectual and Developmental Disabilities, 47(5), 373-385., Accessed 16 April 2013. (In English).

Wilkens, John, 'Nothings need to be heard', email Interview with Diane Goddard, Peyton's Mum, U-T San Diego, 29 March 2013, Accessed 16 April 2013

Williams, Donna, In the Real World, Printed in Vol. 3 No.2 (Feb 1995) of The Facilitated Communication Digest [pp5-9], Reprinted at Institute on Communication & Inclusion, Syraceuse University, Accessed 23 April 2013

Zurcher, Ariane, More About Facilitated Communication, Emma's Hope Book, 15 February 2013, Accessed 22 April 2013

Zurcher, Ariane, Is Facilitated Communication a Valid Form of Communication?, Emma's Hope Book, 16 November 2012, Accessed 22 April 2013

Zurcher, Ariane, An Unexpected Response and The Importance of Trust, Emma's Hope Book, 10 December 2012, Accessed 23 April 2013

Zurcher, Ariane, What I Wish I’d Been Made Aware of When My Daughter Was Diagnosed With Autism, Thinking Person's Guide to Autism, 8 April 2013, Accessed 24 April 2013 

Sharisa Joy Kochmeister et al, The Voices and Choices of Autism - An Insider View, Volume 1, Issue 1 [pp 1-121]: June, 2009, Accessed 23 April 2013

Thursday, December 18, 2014

For God's Sake Stop Speaking

"Autism is forcing parents and caregivers to slow down the frenetic pace of our modern world and look into the eyes of our (autistic) loved ones…as Saint Francis did with the leper." Suzanne Wright Speaking At the Vatican

Dear Mrs. Wright,

I don't know you. We will never, ever meet. But I need to insist that you cease insulting my son and the children of millions of families by continually inflicting your frightening opinions of autism, autism families, the Wright brand of mandated policy for autism and your depressive views of what our lives are like on people each time your speak publicly. 

You and your husband have this huge platform and you use it to equate autistic children with people affected by Hansen disease? When I heard that part of your latest unfortunate speech I had a tough time keeping down my dinner. How dare you?  My son is not affected by disease. But you just keep on going there, don't you? For God's sake  stop insulting my son and all his peers.

Apparently you also didn't know that no one uses the word leper and hasn't for years because it defines the person by their health condition. The appropriate term would be a person affected by Hansen disease. So you've managed to insult that entire community as well. (Please note Hansen disease is curable and those affected by Hansen can live with their familes: click here for more information.)

Your insistence that your tragic ideas on how autism should be viewed, managed, and treated be forcibly imposed on every country in the world is frightening in its scope and ambition. The very loud horn of the autism apocalypse you keep blowing at the world is sad because there is so very much good you could do. I cannot grasp this hate filled fear mongering in someone who has a neurodivergent grandchild. I would think you would want to use every means at your disposal to insure the world accepts him and supports and accommodations are made for him to actively participate in every community. I can't help but wonder how he feels about a grandmother who speaks publicly about how difficult his existence is on his mother as you did in your previous unfortunate address to Washington.

 Because I spend a great deal of time with colleagues  like your grandson, I know that presuming a child with limited expressive speech has no understanding of what you are saying is a large mistake. The most important lesson to be learned from the story of Carly Fleischmann is that when she was able to type, she told her parents that she was subjected to years of them berating her while she was right there. She understood everything she saw on every media around her. She went through waves of self loathing because of it. That should have been enough of a wake up call for all of us with autistic children and loved ones. We should respect our loved ones, regardless of degree of visible disability, enough not to speak ill of them.  But you continue to be stuck in the concept of disability as a disease. Rather than fight for the accommodations,  and the furtherance of technologies needed to help make life more accessible for autistic children and adults, you bellow that autism, like the boogie man, is coming for all of us. If your opinion was not being forced upon us and if your comments did not constantly insult autistic people of all ages, I would say, everyone has an opinion. But you and your husband keep using your power and influence to dictate to the rest of the world how autism should be viewed and that puts statements like the vile thing you said in the quote above squarely in my business. It puts my son at risk by implying he is in a condition equal to someone affected by Hansen disease. You don't dictate how my son's disabilties should be viewed or defined. You don't get to mandate how my son's life should be lived. You don't have that right. Having a grandson with my son's neurology doesn't give you the right to insult autistic people either. 

Disability is the world's largest, and most maligned minority. Like so many pioneering parents and grandparents in the Down community, you could have lifted your grandson up. You could have led the way to life changing policies by standing by him and by trying to reach out to prominent autistic professionals in a real way, with respect. You could have joined with the entire autism community and sought points of policy on which everyone agreed. When Autism Speaks decided to try and dictate federal autism policy without regard to autistic advocates,  parents, other autism organizations, in fact anyone but yourselves, I assumed the backlash would make it clear that your personal opinions shouldn't drive an entire nonprofit no matter how much wealth and power you have because your mandating your distaste for what my son and his peers are is unacceptable to me and literally hundreds of other people. Instead, you are now involving the Catholic church and using your massive privilege to inflict the agenda you couldn't mandate in Washington on the world? Wow. 

By the way lighting public spaces blue neither informs nor aids my son or his peers at all. No amount of offensive puzzle pieces sold in too many different ways and shoved in my family's faces because our son is autistic helps either. 

Stop. Just STOP doing this. 

Autism organizations should be dedicated to greatly improving the  lives of Autistic people and by doing so, improving the lives of their families. They should not be dedicated to insulting them and demanding the obliteration of any variance in the genetic code that produces differences. That you see, is a slippery slope because everyone has an opinion on what should not exist. I know. I am a Black woman. And there are quite a few people out there who think I should be remade to conform to white people more. I don't need blonde hair. I need to be accepted for who I am and where discrimination exists, I need it recognized and dealt with. That is justice. That is the standard that should be set for disabled people as well. Comparing autistic loved ones to people affected by Hansen disease is just scary, because the comment stigmatizes those affected by leprosy and implies that autism is akin to leprosy, a chronic bacterial infection.

Your very loud, seizure inducing awareness campaigns are nothing to be applauded. They are actually harmful to autistic children and adults, you know the people you are supposed to be helping with these efforts.Truly helping would mean you doing the right things. Things like sitting down with your board and making some real decisions on how you can include autistic professionals as equal partners in your organization, so you can move forward without constantly insulting most of a community you insist you speak for. Do you have the kindness and ability to shun worldly wealth, power and pride as St. Francis did? It takes that kind of humility and courage to invite self advocacy organizations, disability rights organizations, and include other legitimate autism organizations in any policy making process before dictating policy and agendas to the world. 

It should never be implied in any way that people view their autistic loved ones the same way a Catholic saint viewed a person affected by Hansen disease. Parents and care providers aren't martyrs or saints. They are people whose job is to take care of their children and loved ones. No autistic person should be viewed as a diseased or damaged person. You were busy dragging St. Francis into this. Wow. He would have been horrified. Shame on you. Shame on you.  

For God's sake, stop saying you are speaking for the entire autism community. You do not speak in the name my son or me or my friends and their children. Stop generalizing the misery of people who are unhappy and blame autism (when they need to look in the mirror)on us. Stop gaslighting autistic people and their families with this litany of derision and doom. 

For God's sake, STOP.