On Blue Light Bulbs

I’ll never forget that moment.

We entered a major home improvement store as we always seemed to be doing as homeowners. It was early spring and the Autism Awareness campaigns were in full swing. My then pre-adolescent son saw it first. It was a sign encouraging customers to “Light it Up Blue” by purchasing blue light bulbs.

He said, “Look, Mom! They are celebrating Autism.”

His face changed as he continued to read on. The sign said autism was a “crisis.” It explained how proceeds would benefit Autism Speaks search for cures and prevention of autism.

My son understood the word cure enough to know it implied he was sick. He looked at me despairingly and asked why they thought he was sick. I told him what I believe – Autism Speaks is absolutely clueless about the life of an autistic person and people are fearful of what they don’t understand. He looked puzzled. He wanted to know why they didn’t just ask autistic people. I explained how Autism Speaks refused to allow autistic people to have a voice in the organization. He shook his head and said how wrong that was.

Then he asked me the question I feared. What did they mean by prevention? Why would they prevent autism? My head was spinning. How could I explain this to my beautiful, perfect child? I blurted out that they cannot prevent autism because it is not a disease, that this was just a way to get more money.

Though not the full story, I could not bear to tell him the rest – that Autism Speaks was heavily funding research that would encourage families to terminate pregnancies. That they were hell-bent on discovering genetic clues so as to advise families against becoming pregnant. That this heavily funded organization wanted to eliminate people like my son from existence through eugenics. That this billion dollar organization intended to find a magic pill that would change my son into something less than, not him.

My heart sank like a rock into the pit of my soul. My son was devastated and deeply hurt and once again, I could not protect him. We left the store that day without what we came for. And we left with a little less hope for the future of humankind.

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Why the Autism "Community" Can’t Get Along

The idea of a “community” in autism activism is a farce. This is because many who are deemed to be part of this community have opposing goals. From my experience, three completely different groups exist. Though there is crossover between some of the groups, the ends are polarized and cannot unite. Below is my perception of the groups, though more groups might exist that are less well-known.

Vaccine-injury Conspiracists

This group believes that autism is a preventable injury. Though no science supports this theory, they hold on to bogus research claims and snake oil. The bulk of this group believes that the pharmaceutical industry has created dangerous vaccines as a way to make more profit (by using cheaper but harmful additives and ingredients or creating unnecessary vaccinations). Others take the theory a little further and believe that the industry is purposefully poisoning the people. Regardless of how extreme, this group tends to believe in pseudoscience and promotes sometimes dangerous “snake-oil” treatments in attempt to cure autism. Groups such as Talk About Curing Autism and Age of Autism are examples of this group’s mentality.

Eugenicists

This group consists of those who seek to eradicate the possibility of new autism births. They seek to find a prenatal test that can identify the likelihood of having a child on the autism spectrum so that families may be given the opportunity to terminate an at-risk pregnancy. They also seek to find ways to keep the so-called disorder from happening – presuming autism is a preventable defect (think Fetal Alcohol Syndrome). They hope to find a “cure” for those they believe are “suffering with autism.” They throw millions of dollars into “awareness campaigns” that stigmatize those who are on the spectrum. They also fund research that might further their goals. A good example of this group is Autism Speaks.

Neurodiverse

This is where the self-advocates, often identifying as autistic, tend to flourish. This group believes that disability is natural and that autism is a neurological difference and a variant of human diversity. This group vehemently opposes that autism should be prevented or cured. Led by disability activists, this marginalized group has been compared to the civil rights movements of the past. Their motto is “Nothing about us, without us!” This group promotes “acceptance” rather than awareness. Most of this group consists of those identifying as autistic. In the recent past, however, many non-autistic (aka allistic) allies have joined in support of the neurodiverse message. This group has been notoriously labeled by other groups as “too angry.” Others have attempted to discredit the movement by insinuating the members are not truly disabled and are NLMC (not like my child). A couple examples of this movement are the Autistic Self Advocacy Network and the Autism Women’s Network.

You may already be able to discern why these groups cannot converge. Here are a few ways they do and do not.

Convergence

Eugenicists and Conspiracists
These two groups agree that autism is potentially preventable and treatable. Both tend to infantilize autism as believing it only affects children (somehow magically disappearing in adulthood).

Neurodiverse and Eugenicists
There is very little agreement between these two groups. Both groups do support scientific research about autism but the support for research focus is very different.

Conspiracists and Neurodiverse
I am at a loss to find any common ground with these two groups.

Divergence

Eugenicists vs. Conspiracists
The eugenicists represent legitimate (albeit ethically questionable) science. The conspiracists do not.

Eugenicists vs. Neurodiverse
The neurodiverse are strongly against cures and prevention for autism and consider autism a natural human variant. The eugenicists are strongly for cures and prevention and consider autism a disease or affliction. Eugenicists seek social awareness while the neurodiverse seek social acceptance.

Neurodiverse vs. Conspiracists
Conspiracists believe that all cases of autism are preventable injury and fight to stop this so-called injury. They promote treatments that are often harmful and dangerous. Neurodiverse do not support questionable treatments for autism nor do they support the idea that autism is caused by a preventable injury.

It is probably not so hard to see why there is little community behavior between these groups. It is unrealistic to believe that they will ever converge because they simply do not share the same goals. Community generally refers to common ground. It is not only unrealistic to infer we should all “just get along,” it is offensive. What most really mean by that statement is that the marginalized group should be silenced.
I won’t deny that there are people who do not fit neatly into any of the three groups. Often we hear those who say they support the neurodiverse message but still seek a cure for some. These statements are in disharmony and make little sense. Realistically, these people are supporters of the eugenics or conspiracists groups but do not want to identify as such. You simply cannot be for finding a cure for autism and at the same time believe autism is a natural part of human diversity.
For those who read my blog, it is probably easy to see that I am an ally to the neurodiversity movement. My belief is that those who are labeled – are living with a disability, should be calling the shots. I believe that people on the spectrum should have a voice no matter whether their voice is through augmentative communication or their vocal chords. I cannot possibly imagine that I, an onlooker, should have more say than this marginalized group of people. I don’t get to determine how they should think and feel anymore then they do for me. This is their battle and I proudly stand beside them in support. As a parent, I stand beside my autistic son and let him be my guide.

This Raving Mother from Hell celebrates 1000 Ausome Things #AutismPositivity2013

My thirteen year old ausome son…

  • knows more about plant and animal biology than most college students
  • is more protective of earth’s precious plants and animals than most conservationists
  • takes more seriously performing in a play or concert than most adults
  • is more decent to humankind than it often deserves

I hope someday to be half the amazing person he is.

My April Vow

This April, I vow not to make Autism Awareness about me. I vow instead to make Autism Acceptance about Autistics, like my son. 

I am allistic, a parent, an observer, a bystander. 

I will not “light it up blue.”
I will not promote “puzzle pieces.”

I will let the people who wear the autistic label define their disability. Nothing about them without them.

Let April be about truly supporting people with disabilities instead of advocating for the families – the parents. 

This has never really been about me. 

Join me and take the pledge to only attend, speak at or otherwise participate in autism panels, conferences and events that meaningfully involve Autistic people. 
http://www.autismacceptancemonth.com/pledge/

Return of the Salem Witch Hunt

Mass Hysteria: Anyone with Mental
Health Issues is a Dangerous Killer

I couldn’t help this week but to draw a parallel to the witch trials with the mass hysteria caused by the irresponsible and unethical media. The people are now shouting from their social media rooftops – “hang them – they are killers!” If that were not enough, hate mongers posing as religious zealots are lighting other’s torches preparing for the hunt.

Much like the days of the Salem witch trials, people want a solution to end the wickedness (violence) society has brought upon itself. And our sensationalized media has been delivering by offering a scapegoat – people with developmental disabilities and mental health disorders. Let the burning and hanging begin.

No amount of real data can deter these convinced witch hunters. No, anecdotes and speculation are all the proof they need. “My friend’s sister’s cousin works with these people and she says they are just dangerous.” So it must be true. And then of course, some Bloggers also chime in with their pained stories of how hard it is to parent these awful children – “don’t you feel sorry for MEEEEEEEEEE?” I mean, if it’s on the internet, it must be true, right?

(The answer would be no. No, it’s not true. Data doesn’t lie – but people do.)

Ironically, those with mental health and other developmental disabilities are less likely to commit violent crimes than typical folks. But you’ve heard this before. Yeah, I know – your BFF’s dogsitter’s sister-in-law said….

Some statistics from the American Psychological Association regarding the mental health of the United States:

  • Published studies report that about 25 percent of all U.S. adults have a mental illness and that nearly 50 percent of U.S. adults will develop at least one mental illness during their lifetime. (CDC)

That’s a lot of people who are potential killers. And well, 50% pretty much means either you or someone in your home will eventually have a diagnosable mental health disorder if not already. That number doesn’t account for the developmental disabilities also being accused. Better take cover or warn your spouse – you might be living with the Devil’s Spawn!!!

In all seriousness, this hysteria must stop. Remember what happened to a society who bought into the witch trials? It is happening again for people with disabilities. Real people are being targeted this week. They are being told they are killers, and worse – that they should be killed. Children are shouting horrible things to their disabled peers in school. People in store check out lines are viciously discussing how we need to lock them all up.

Each one of us is susceptible to being labeled with a mental health disorder in our lifetime. That does not make us more likely to commit premeditated murder. In fact, it makes us all the more likely to become victims by the hand of an otherwise sane individual.

This is not to say that mental health should be ignored. Far from it. Our society is less likely to seek help for mental health issues because of the stigma associated with a diagnosis. That needs to change. People should not fear seeking help from a psychologist anymore than they fear obtaining an eyeglass prescription from an optometrist. As the statistics show, half of us will need to seek help for our mental health at some point in our lives. HALF. Though I’d guess more than half need eye correction, that’s still a lot of people.

Take a deep breath. Clear your mind. We don’t need to figure out why this happened. We do, however, need to take active measures to stop it from happening again. But that doesn’t start with creating mental health concentration camps or institutionalizing people based on labels. It starts by changing the way we as a society tolerate violence for entertainment. It starts by rethinking weapons laws and accessibility. It starts by realizing we are all human and not infallible. And it starts by letting the families in Connecticut grieve without fear that their loss started the biggest witch hunt since 1692.

Using Tragedy for Personal Gain

What a few days of utter hell! Advocates all over the country have been attempting to extinguish fires set by the media. It seems the media’s mission has been to out-sensationalize tabloid journalism. Highly emotional, the public is outraged and rightly so – too many innocent people are dying by the hands of gun owners with deadly assault weapons (people kill people, right?). The media knows that the public wants immediate answers and solutions that point the blame away from gun restrictions. And so they deliver.

While there was some talk about gun control, the new focus has become mental health. The headlines began to read the “Killer may have had [insert mental health diagnosis].” Thanks to this media hype, the dismayed public is now asking, why aren’t these “dangerous” people with mental health issues being helped? Adding more mental health stigma to an already terrible situation, enter the opportunistic vultures.

Over the weekend, a blogger (whom I refuse to name in effort to prevent feeding her more media attention) created a blog post under her real name (no pseudonyms for this one). This blog openly discussed her child’s dangerous mental health issues. Most disturbingly, the headline compared her thirteen-year-old child to a murderer. The blog post went viral. People all over applauded her bravery for sharing her story – a story that led the public to believe she was in danger and that her son might be the next mass murderer -a Michael Myers meets Jason of Friday the 13th waiting to happen. She used fear and panic to add more stigma about people with mental health disabilities. And the public was buying it.

One only had to dive deeper into this woman’s blog to see that there was indeed a very troubling history. Her child was allegedly sexually abused by her x-husband – a story in which she tells of a court hearing where alleged-molester-daddy-dearest gives the boy the cold shoulder causing the kiddo to break down. Later we read Daddy has joint custody. But that’s not all, no. Daddy has supposedly had this same 13-year-old child “incarcerated” four times!!!  Is it any wonder this child might have mental health issues? Mom also claims her boy threatened suicide to police and was hospitalized in a mental health facility on at least one occasion (we presume during jail time).These grandiose stories were starting to be over the top.

Did I mention Mom is a writer? She’s been interviewed by several local media outlets in the past – never discussing this crazed life she lives.  She has, however, given interviews on a local radio station about using Facebook as a tool to build an audience as a writer. She also worked for a time as a magazine editor. She even tells us on her personal blog about using Facebook to create a persona – someone she “wanted to become.” Hmmmmmm.

There are some very troubling parents who think they are helping their children by posting personal information. I won’t deny that I have seen it. But typically, these parents are “green” when it comes to social media. They don’t realize what they post on Facebook today ends up in Google’s search engine tomorrow. This mother, however, is not green. She’s a college art instructor who writes professional articles and erotica novels in her spare time. She expertly blogs, tweets, and Facebooks til the cows come home and advises others on utilizing these tools for self promotion.This mother did not inadvertently give out personal information that could harm her child without knowing she did so. No, this was contrived. Which leads me to my main point.

I don’t believe her story. Her child may indeed exist – she has his and the family photos on the blog for all to see. He may even have an un-diagnosed mental health disorder. But I am unconvinced that this educated and savvy writer would willingly expose her child risking adolescent bullies and public retaliation. After all, she did not hide her identity (though supposedly changing the child’s first name). No rational parent throws their kid under the bus like that. Mom has seemed to find a lot of time to blog, write books, and tweet. I would think she’d be able to find time to get her child some appropriate help, should he really need it. Our mental health system is far from perfect. But there is help for those who have means. One would think a college instructor has the means. Are we to believe that rather than privately seeking help for him, she blogged about it?

No, I don’t believe that this woman has a child who is dangerous and has driven her to the brink as she’d have you believe. She is someone who saw an opportunity to get her name known. Perhaps this was her chance to get a real publisher to look at her work. Whatever the motive, I firmly believe that this was all about her and never about a social mental health crisis. Because all this woman did was make it worse. She helped link people with mental health issues to violent murderous behavior. I anxiously await the publication of her autobiography.

My Broken Back

After a week of illness I informally deemed “the new black plague” and end of semester finals, I thought Friday’s tragedy was the straw that would break this camel’s back. You see, I loathe guns. I will not have them in my home, regardless of their purpose. I’m not exactly sure when I formed this strong opinion, but know it began at least by my adolescence as I remember having this debate in civics class. Ironically, I grew up in a home with handguns and hunting rifles. I have no traumatic stories to tell that explain my great dislike of guns. Yet I do, very strongly, dislike weapons and see no sign of changing this perspective.
So when I finally came out of my cave of academic study and heard the news, I thought I would crumble. More senseless death, of children no less, in the name of someone’s barbarous argument that it is their “Constitutional Right” to carry and stockpile these killing machines. I have grown weary from the argument. Little did I know, however, that this story would become personal and downright paralyzing.
The media, in effort to sell the story, figured it had better give us the big answer: Why? Why would this young man have done such an unspeakable thing? In reality, because the shooter is also dead we will never know. But let the speculation begin. The media was going to give us that BIG answer, though completely unfounded.
ABC was the first news network to start the rumor. An anonymous relative supposedly said the killer was autistic and had a personality disorder. Within moments, that misinformation went viral. ABC had “dirt” it so desperately needed to stand out from its competing networks. Soon after, ABC removed that information from their website – presumably it was misinformation. But it was way too late. Other news media, bloggers, commentators, you-name-it stumbled on that misinformation and had begun to spread it like wildfire. There would be counters to this misinformation, but it would fall on deaf ears. You see, saying “we don’t know why” doesn’t sell papers or increase sponsorship. People want answers. And they are ready to accept those answers regardless of who gets hurt in the process. They are especially ready to point blame at something other than “the gun.”
Today, I continue to read the horror stories. Not the shooting details. I simply refuse to patronize the sensationalist news media with their nonstop speculative commentary. The families deserve much better. No, I am reading about the “witch hunt” demonizing autistics – the ongoing pleas to stop autistics from hurting others – to limit autistic rights – the nonsense connections from someone who knows someone who knows someone with an autistic family member who was “just like” the shooter. The well-meaning bloggers who plead for better “mental health” for people “suffering from autism.”
Autism, though still in the DSM, is considered a neurobiological disorder by the specialists and researchers who are forefront. It is a different wiring system in the brain that causes the individual to process differently than what is typical. Symptoms of autism do not include premeditated violent behavior.
Autistics and individuals with other disabilities are no more likely to commit violent crime than non-disabled people. In fact, people with disabilities of all kinds, including autism, are much more likely to be the victims of violent crime. Attributing autism as a motive to this heinous crime is no more valid than attributing Adam Lanza’s maleness, human-ess, or the fact that he lived in Connecticut. Though all of these things are true, they do not motivate one to murder.
Today I live in fear because of a rhetorical interpretation of the 2nd Amendment. I fear that I cannot safely go Christmas shopping without the possibility that a “legal” gun owner might go on a killing spree. Leaving our home increases the likely-hood my family will die by gunfire. I fear my family may end up collateral damage so that gun enthusiasts can continue to stockpile assault weapons.
But I mostly live in fear for my autistic child. A victim of abuse by the hands of “typical” people, my child, who values life above all, is now the target of a media frenzy.
Today my back is broken and it is difficult to have hope.