Wednesday, March 4, 2015

Neurodiversity, You're Doing it Wrong

ID: small triangles of varying colors make up the background. Black text reads: Neurodiversity is biological, irrefutable fact.

Love, neuroscientist in training -K

You might remember that I critiqued an article about Carly Fleischmann published on Autism Daily Newscast (ADN) a few weeks ago. The other day the same magazine solicited on the Parenting Autistic Children With Love & Acceptance Facebook page, seeking submissions for an upcoming online issue they are working on focused on Neurodiversity. The query mentioned something about our community members have strong opinions. I can't remember because we quickly deleted their post. Why? Again, ADN is doing it wrong.

The title of the current article asking for submissions "Neurodiversity, What's Your View?" is the first red flag. Neurodiversity isn't an opinion. It's a fact. It's actually not a special fact either. It's just like all the other kinds of diversity. As Kassiane said above, this is irrefutable. Our brains are as diverse as our finger prints. Whether or not the Neurodiversity movement is acknowledged is another matter. I am glad ADN is finally recognizing the Neurodiversity movement, but facts aren't up for debate.

Getting past the title, it becomes obvious that ADN hasn't the intention of supporting those Autistic advocates and activists who are promoting the good science that is Neurodiversity. No, ADN instead uses the beginning paragraph to highlight a horrible story that came out recently titled "The Debate Over an Autism Cure Turns Hostile". (Side note, that "Hostile" in the title was "Violent" but due to backlash from the Autistic community it was changed to a more subtlety bigoted word). The article signal boosted a pro-cure Autistic man, who has bullied and abused his way around the Autism Community for years. He's so vile I won't type his name.

ADN uses his point of view as a springboard for this discussion, once again signal boosting his hate, and demonstrating that they are functioning behind the times. Anyone who learns about Neurodiversity from this man's lowly portrayal is so far lost within the cure culture that they haven't the right to be reporting on the subject. In other words, ADN needs to do some research before using their platform. They have chosen the Neurodiversity movement's most obnoxious nemesis and his scathing words, that Neurodiversity is a "scam", to bring the topic to light? It's insulting.

The article does go on to offer opposition to the pro-cure stance, though quoting Julia Bascom, a tireless pro-Neurodiversity activist, did come second, not first. The starting point was hate. The starting point was not acceptance. Julia says another irrefutable fact, "Autism isn’t a disease or an injury; it’s a neurodevelopmental disability that shapes our brains differently." ADN pulled the quote from third article that I will give them credit for linking, They Don’t Want an Autism Cure. I suppose, in order to have a discussion on Neurodiversity, there has to be some opposition to pro-cure agendas.

Then to "balance" out the article, ADN retreats back into the agenda of anti-Neurodiversity man. In an attempt to discredit those fighting for acceptance, to dismiss Julia's statement, they use his quote that Autism is a “divisibility and a disorder and a disease" (they actually misquote him it's supposed to be *disability* not divisibility). This is the exact opposite of what little coverage they actually gave to the Neurodiversity movement in Julia's quote. To be very clear, Autistic people do not deny that Autism is a disability. They do, however, reject the idea that Autism is a disorder and a disease because facts. ADN negated the only good thing in the article.

They then close the article with a video, leaving no debate over whether this is a simple case of ignorance on ADN's behalf, or a willful act against Autistics seeking acceptance. They end with a video interview of anti-neurodiversity-bully-pro-cure-man who's name I won't type, completely bashing Neurodiversity, denying both the science and the social movement. The host demeans the Neurodiversity with the tone of her description in the beginning, and continues to poo-poo the movement throughout. It's a blatant display of disrespect from an organization claiming to want to join the discussion on Neurodiversity.

Why am I being so hard on Autism Daily Newscast?

First, both times I have written about ADN, they have approached me. It's not like I went looking for their mistakes. They showed them off. That means little though, the bottom line is they are spreading misinformation at the least, and hate at the worst. They make claims of unbiased reporting, when nothing could be further from the truth. Before getting their bearings in the Autism community, parents like I once was, have to wade through piles of this junk reporting and false information to get to true understanding. Autistic people have to live from underneath these lies, they have to dig their way out just to be recognized as human, when their humanity is a matter of fact.

ADN, you are doing it wrong. You need to do better. Both for the Autistic people you claim to represent and your own worth as a online magazine, you need to do better.

Neurodiversity cannot be discussed out of reality. Catch up.

Sunday, March 1, 2015

Why @MTV Stood With #AutismSpeaks10 Instead of Autistics

Yesterday I was thrilled to find an article written by MTV  "This Autism Nonprofit is looking for a Cure, but some Actually Autistic people aren't happy about it." The link is a memory cache, and that's all we have left because they redacted the article within a few hours. The article was about the #AutismSpeaks10 campaign and how the Autistic community and their allies worked to successfully dominate the conversation for once. To have MTV covering the story was exciting. To see it removed was maddening. I am fortunate to be privy to the details of why, and now I will share this wide open.

Before I do, here is Amy's experience. It's an important read.

My good friend Amy Sequenzia received a request for comment on the article as it was being put together, through personal message on the Boycott Autism Speaks Facebook page. She responded below.

When an Autistic person, especially one that works as hard as Amy does, has something to say, why do we think we can play around with those words and make them suit our purposes? We claim that Autistics have a communication deficit, and yet we pick and choose what we want to hear and how we want to hear it. Amy was well aware this might happen, which is why she was so determined to have fair representation of herself in the article. Amy submitted a comment to Robin Lempel, the author, with the firm stipulation that her words not be edited or reduced. Robin reassured her several times agreeing with her terms each time it was brought up. Sure enough, Amy was wise to be wary.

Shortly before the article was published, as requested, Robin sent a preview to Amy through email. The preview included the full quote. But the published article did not contain the full quote. Amy immediately contacted Robin to ask why. Robin gave her Caitlin Abber's email, as Caitlin was responsible for the editing. They began the following exchange. I do not (at this time) have Amy's first email screen capped, however the text is available now.

Dear Ms. Abber

I was asked by Robin to comment on the article published today about the Twitter hijack of Autism Speaks celebratory hashtag.

I said I would comment, but with the condition that the whole comment be published, no edits.
She agreed.

I also gave her links to articles that would be a good source of information, in case a non-edited quote were not possible. I was not interested in being half-quoted.

Sadly, the article - which is very good - does not have the full quote.

I am asking that this get corrected, either by editing the article, or by adding a footnote to it with the rest of the quote - ASAP.

Amy Sequenzia

Caitlin responded with:

Then Amy responded:


Instead of removing Amy's quote, as they again promised her, Caitlin took a passive aggressive swipe at the whole Autistic community. She not only silenced Amy, she silenced each and every Autistic person quoted in the article. She silenced the Autistic community, by removing their hard earned collective voice against Autism Speaks. She took down the entire article.

To recap because I know this is complicated;

1. Amy set a precondition that her quote would be used in full or not at all.

2. Robin (the author) said she would honor that.

3. Amy submitted her quote as per the agreement, as well as links to supplement, just incase they did not want to print the full quote.

4. Robin sent Amy a preview of the article where the quote was used in full.

5. Caitlin (the editor) used Amy's words to do as she pleased, breeching the agreement, and published the article with the quote trimmed.

6. Amy contacted them both asking them to correct their "mistake".

7. Caitlin excused her actions, stating that because Autism Speaks had not responded, it was "balanced" to break the agreement.

8. Caitlin made another agreement, to remove Amy's quote.

9. Caitlin again said one thing but did as she pleased, removing the entire article.

It's important to recognize the statement from Caitlin that Autism Speaks hadn't responded to the media request, because it very clearly illustrates how much influence Autism Speaks has. How many news stories have one of the parties being reported on refuse to comment? Many. How many times has Autism Speaks responded to the thousands of individuals, both Autistics and their loved ones, protesting their unscrupulous behavior towards the very people they claim to represent? Never. How are Autistic people ever going to get their side of the story told, if reporters and editors like these at MTV bow down to the powerful Autism Speaks, or worse yet, join them willingly? Somebody please tell me. I don't know.

It was just too much trouble for Robin, Caitlin, and MTV to fulfill their end of the bargain. They mislead Amy until after the story had been published, and then they continued to mislead her with the promise of correction. They did not even attempt to renegotiate before using their own discretion. Before using. Before lying. Before extending any respect for Amy and the Autistic community or considering the good they could be doing in a civil rights movement. They didn't even try. It was just too much trouble to use integrity and far too easy for MTV to use a person.

It was just a story to MTV, to these women. It was something that could be trashed as not important enough, because some petty editor was uncomfortable with being asked to honor her word. Autistic people live it. My Autistic children live it. I live it too. We live knowing the damage that Autism Speaks inflicts. Now MTV has chosen to support them by silencing the Autistic community. MTV knows better now. They know the story but choose to disassociate themselves, as if that relieves them of responsibility to do the right thing. It doesn't.

Robin, Caitlin, MTV, I can never understand why Autism is such a hot media topic, and yet you folks continually silence actually Autistic people and cut them out of their own story. You can still do the right thing. You can still make this better. You can be an ally to Autistics in their struggle to be heard. You can change your mind.

Thursday, February 26, 2015

Division in the Autism Community

Image of a tweet from yours truly. The tweet reads: Tired of the claim that #Autistics & their allies divide the community. Saying no to fear rhetoric is self preservation. #AutismSpeaks10

To begin one of my favorite quotes, from one of my favorite musicians, Peter Tosh.

With my recent post about rejecting the term "Autism mom" I got push back from many "Autism moms". The whole -it's just semantics- dismissal was used. If you have the liberty to make light of language it is because you are too privileged to feel the damage. It's not just semantics when it is you that the world is busy defining in negative terminology. I also got the -you're creating division in the community- dismissal. I heartily disagree.

First and foremost, if you are unaware of the gaping divide between the Autism community and the Autistic community, you've got a lot to learn. The Autism community is comprised of both Autistic people and all those non-Autistic people who are vested some how in the area of Autism. Parents of Autistic children, professionals, teachers, friends, the whole big bunch of us. The Autistic community is strictly Autistic people. The clash between the two groups is what I have been writing about for four years. The divide. The difference. The discrepancy.

The divide is good. It's good because many in the Autism community do terrible things to those in the Autistic community. Filicide, abuse, use, bullying, attempts to "cure" with unsafe techniques, attempts to "fix" with repressive therapies, these are all things that the Autism community inflicts upon the Autistic community. When Autistics say no, they create the boundary with which the divide begins. It's a damn good thing they do this. As I said above, it's self preservation. How dare we do these things to a people, and how dare we insist on peace, while these things are commonplace.

My job, and your job too if you are not Autistic, is to stand in that division. Yes, it's an ugly place. I've said before, it's a lonely place. I stand there to both strengthen the Autistic community's hold, and to usher those from the Autism community into the divide with me. When I write refuse "Autism mom" it is a sentiment I have taken from my Autistic friends, and then offered to the other side. When I defend the murdered Autistic children, when I write about stopping therapy, when I write about the damage that Autism Speaks creates, I am writing in solidarity with Autistic people, and to the Autism community.

I am also writing for my family. I would never know my children standing in opposition to their being. It might be lonely in the middle, my work might not ever be done, but I am doing what every mother does. I am supporting my kids. I could never tolerate the treatment they receive from the Autism community and the larger world. Because they are young and cannot defend themselves, I support their people, who are defending them. My place in the divide is to usher in loving and accepting people, but it is to protect my children from the other side too. I will push back on you if you cross the line with me and mine.

So when you accuse me of dividing the community, I say I don't want no peace. I want equal rights and justice. That's what Autistic people are fighting for, and that's what they deserve. If you don't like division, get in the trenches with me and fight the good fight for our loved ones, for the Autistic community. After all, we all gather in their name. It's the least we can do.

Just an FYI: This tweet is from the #AutismSpeaks10 take down. Autism Speaks is attempting to celebrate their own 10 years of existence and continued dedication to smite the existence of Autistics.  Meanwhile, the hashtag has been dominated by #ActuallyAutistic people and those that love them. Join in the fun. It's the best party I ever crashed!

Tuesday, February 24, 2015

#AutismSpeaks10: Bully

Trigger Warning: This post discusses both bullying and rape.
I have thought long and hard before publishing. I am afraid with good reason. Take one look at his website and you will see why. I won't link here. It's too disgusting. It's too triggering. 
On another note, my friend mentioned in the post gave me full permission to write about the incident.

While I was happily raining on the #AutismSpeaks10 parade, I came across this unsavory character. Several times actually. The first time, he was complaining about his Autistic child, and the second time, he was bullying a friend. I have covered her name and handle in hopes she does not receive further horrid treatment. The tweets are easy enough to find anyway, especially if you are curious as to what sparked such an ugly response. It's certainly not the first time I have seen a parent of Autistic children bully an Autistic adult. It's not the first time I have seen a man threaten a woman with rape either.
Let's unpack the bullying of Autistics by parents first. There are some typical bullying behaviors demonstrated by these types of parents. One of the most common ones, and the one this creep (that will be his name now) was using yesterday is called gaslighting. The gist of gaslighting is that the bully denies the experience of the victim to the point of that the victim begins questioning it themselves, or, refutes the person's existence attempting to drive them crazy with self doubt. Notice above, my friend was afraid to use the word bully, because she knows from experience, it will be denied and even blamed on her.
The premise for creep's binge of bullying is a go-to-gaslight for parents; you are not like my child. In other words, you are not as disabled as my child so you cannot be acknowledged in the conversation about Autism. Apparently, if you can type, if you can defend yourself against bigotry, you aren't disabled. In this case, the Autistic person said something about being Autistic, and the creep came along to dismiss her actuality. Creep said her words were "bullshit" to be exact. He also questioned her diagnosis, among other gaslighty things. For what it's worth, apparently creep has established a pattern of this, but again, this is just one example in the larger pattern of how Autistics are treated by many parents.

These common bullying tactics used are often based in dismissal. On a grand scale this is called erasure. As a parent of Autistic children, the way other parents attempt to erase Autistic adults infuriates me. Most all of the misconceptions that we have about Autism can be cleared up once we recognize that there are many many many adult Autistics. The lie of epidemic dies. Panic diminishes. Fear fades. Then we non-Autistics can get down to listening instead of projecting. I get mad when I know there is a way to free my children from oppression while other parents work tirelessly at erasing the people behind the possibility. When these things are done by an individual habitually, it becomes abuse. My Autistic friends are abused by creeps all the time.

Now onto creep's use of the word rape. It's a privilege to not have to think about rape, and any man who would use the word carelessly is dangerous. It becomes a threat. At best he hasn't thought about the seriousness of it, hasn't thought about how many women recoil in pain when the word is used, hasn't thought about it being their sister, or mother, or wife, hasn't thought about how it could be them too. To be a man and to not think on those things is piggish. To use the word rape casually demonstrates a degree of indifference that encourages rape to exist. Making one of the most heinous acts committed against us, a punch line, an analogy, an easily used word, is a threat to women everywhere. We don't need our all to real abuse trivialized.

Worse than not thinking it through, is thinking it through and then choosing to use the word with the intent of hurting women. It's easier to notice the threat then, even if the man hasn't said the words "I will rape you". The hatred isn't accidental. Malice is the foundation. This is also the category I would put creep in. When I called him out on his bullying, he upped the anti. Creep knew it would hurt. He was on a rampage hurting any Autistic person he could find. This kind of person that willfully causes harm has the potential to make rape more than a word. That's the worst thing. Rape as reality.

As I said, this all started with the Autistic upheaval of the Autism Speaks' #AutismSpeaks10 campaign, where A$ tried to celebrate it's own 10-home-wrecking-years of existence. It's fitting that creep was hanging out with the biggest bully of all, trying to road block the success that the Autistic community has made in dominating the conversation. They cook up hate and creep devours it. Of course creep's hostility is not limited to Autistics but spills over onto women as well. Hate can never be contained. Like I told creep though, haters always hate themselves the most.

Saturday, February 21, 2015

Mother of Autistic Children, Not Autism Mom

In the past I have written about how I have rejected the title "Autism mom". Variations of such, "Autism dad", "Autism parents", even "Autism expert" all leave a bitter taste in my mouth. I once was all too proud to hold the name "Autism mom". I thought it reflected my strength, like an earned badge. I thought it set me aside. Maybe it even meant I was some how special. I'm not.

I am just a parent. A mother. A mother of Autistic children.

The term "Autism mom" doesn't do anyone good. It is from an era of language quickly becoming out of touch for the same reasons that person first language has been rejected by the Autistic community in favor of identity first. My friends don't "have Autism" they are Autistic, just like I don't have Judaism, I am Jewish.

Autistics don't have anything. They are.

"Autism mom" gives the impression that I am parenting a thing to be had, not a human. I am not parenting a so called condition. I am parenting children. Autistic is one descriptor applicable. Jewish. American. Gifted. Autistic. Pick your poison. It's also a descriptor that should have no shame attached.

My Autistic children deserve to grow up proud of their humanity.

"Autism mom" simultaneously puts parents on a pedestal. The fear rhetoric is at a peak surrounding Autism and it has become every uneducated mother's worst nightmare. I become "heroic" because I got the thing to raise. I got the nightmare. Yet we are still living. Still existing. This automatically proves my fortitude, whether or not it's true.

What has made me strong is rejecting the fear. Love takes guts.

"Autism Mom" has also, for Autistic people, become synonymous with distrust, with pain. When "Autism Moms" are taught that their child is something to fear and that they themselves are somehow special, superior, they do all sorts of things that harm. They silence. They erase. They even commit acts of filicide. This might sound extreme but it's all too real.

The distrust Autistics have for "Autism Moms" is justified.

It is also important that parents of Autistic children consider our sense of identity as it relates to our children, for ourselves. Putting "Autism" in front of who we are, mothers, fathers, parents, is unhealthy for us too. Our children are who they are, and we are who we are. They are Autistic and we are parents. Two individuals, two identities, connected but both deserving of respect in our own right.

 Call me a mother of Autistic children, not "Autism mom".


Image Description: Red textured background, with finger prints forming a heart shape. Text reads:

When you say you would cure your Autistic kid "in a heartbeat!" I have to wonder if your heart beats.

Then my heart breaks. -Heather Clark

Friday, February 20, 2015

Twice Denied

I recently wrote about my children being twice exceptional, both gifted and disabled. A good friend commented on the post that she too was both gifted and Autistic. She explained that this has made it very difficult to get supports and accommodations because her abilities are used to dismiss her disabilities. This is a point I would like to suss out further as it is a reoccurring act against Autistics, and because it has already happened to my young children.

While my children are both gifted and disabled, I could have named them night and day.

One is instantly recognizable as Autistic. The way he moves his body with a bounce and runs with a flutter, is notably Autistic. The way he speaks in song, pattern, and symbolism is glaringly Autistic. The way he couldn't conform if he wanted to, the way the doctor diagnosed him while walking in the room, the way he is, proves his disability.

But it doesn't prove his genius. He is denied.

One is easily identified as gifted. The way he is so articulate and bubbling with excitement to speak, establishes his giftedness. The way he demonstrates his unbelievably deep sense of compassion, shows his giftedness. The way he masters complex games of strategy, the way he was at first refused a diagnosis, the way he is, proves his genius.

But it doesn't prove his disability. He is denied.

One began reading at two.
One did the same numerically.
One walked on tip toes.
One has balance like a cat.
One watches movies in his head.
One hacked the calendar system.
One writhes in pain with socks.
One can't take his socks off.
One can't distinguish between faces.
One never forgets a face.

Tell me who is who.
Tell me where the line is drawn.
Tell me how to raise whole children in a world that only acknowledges half.

It's as if the disability cancels out the giftedness and vice versa. As if they erase each other. As if it all falls together in some neat little equation to soothe the poor mathematicians back into their apathy. It doesn't work that way. We can't pick and choose what is acceptable within a person. We can't erase the parts that aren't easily understood. We are talking about dynamic human beings. Deep and wide, we are only human beings.

I love and accept my kids all the way. They are disabled and I love them. They are gifted and I love them. The degree of disability does not factor into my acceptance. Their gifts are not what qualifies my acceptance. I deny neither. It's messy this life. It's a whole lot more messy than we give each other credit for.

I expect that the world respect my children as whole.

Expect me to protect their full and wonderful identities.

Wednesday, February 18, 2015

Waiting for Carly Fleischmann

Autism Daily Newscast reported Shan Ellis decided to take a leaf out of Carly’s own book, and go “straight to the horse’s mouth“. In an exclusive interview, we talked directly to Carly’s father...

This afternoon, I received a tweet from Autism Daily Newscast about the article they published,  What happened to Carly Fleischmann? : an exclusive interview with her father. I had already read the article. I have been following Carly for years.

Carly Fleischmann is a young Autistic woman, who has worked hard to communicate her non-speaking voice through typing. Carly finally proved her competence, and she did have to prove it, because for most of her young years were spent in demeaning and unhelpful therapies like Applied Behavior Analysis (ABA). The article says:

"Then, she had a breakthrough. At age eleven, Carly was allowed on the computer, where she typed out: HELP HELP"

When people learn of her story, they quickly come to adore her. I certainly do. Notice though, Carly was allowed on the computer. The language is revealing.

Recently, I've been reading about the injuries she suffered from electroconvulsive therapy (ECT), which were discussed in the article. ECT is a controversial treatment usually used for depression, where the brain is triggered into seizures, hopefully changing the brain's chemistry.

Unfortunately, after going through ECT, Carly went from a prolific typist, a college student, and an active voice in the Autistic community, to near silence. A cryptic message Carly left on her Facebook page in December, moved everyone in the Autism community to worry. 

"i cabnt typerc anymmyore ectt didfd thisds to meed brayiin is scrrammbellld needdc fdocttor helphgfi"

(I can't type anymore ect did this to me brain is scrambled need doctor help)

All expressed great concern to learn that Carly has such harm from ECT, including and especially, her fellow Autistics.

At that point, her father posted on her Facebook page saying that Carly had undergone ECT to treat her obsessive compulsion disorder and that she hadn't been able to type since shortly after the procedure. He also noted that Carly's message above was progress and that it was a joyful time.

But the unease grew as Carly reached out to her Facebook community with another post in January, where she described herself as being in her head, frustrated, and locked in again. She also describes her parents:

"msjy mosgm wolpnt stwtop taorlkisng asgnd iswts relalyy
My mom wont stop talking and its really


bsecausgse iop dnsont geswt wahlat shnne ilps svavyinmg
because I dont get what she is saying

Mssy dpdad chlnangses hilps voiscse vauluame alwll thwae tiwqme
My dad changes his voice valume all the time

anafnd iitps nosft hlewping
and it's not helping"

So when this article about Carly came out I was extremely interested in reading it. I do want to know what happened to Carly Fleischmann. The title was immediately unnerving, because obviously, it was an interview with her father and not her.

Her father's depiction is not "straight from the horse's mouth" as the article ironically claims.

In the Autism community, you will find plenty of parents over talking their children. Talking too soon. Too loud. Without too much consideration for their children. You will also find that Autistics are routinely infantilized.

Carly is an adult. She has proven that she can work hard and find words. Her father speaking for her is suspect even with her current struggle to type, because this is her story. She gets to decide when, where, and how to tell it. For the majority, his words are enough. Autistics know better. They experience this kind of routine silencing every day. They know Carly has something to say. I agree.

We want to hear from Carly.

More, the content of his responses in the interview was upsetting. Shirking responsibility, he made it very clear that Carly herself, initiated the ECT procedure due to her OCD. Carly may very well have initiated the treatment, but the intensive ABA therapy she went through in her young life likely created and exasperated her OCD. That's one of the horrid side effects of ABA "therapy" that all too many Autistics will verify.

He describes her life as out of her control without acknowledging the control he has exerted, and allowed others to exert, over her. As much as her father would like to place blame on her for choosing such a controversial treatment to ease her battle with OCD, the history of his choices and the impact they have had on Carly's life cannot be dismissed.

The compliance training Autistic children are put through is damaging.

Why did Carly's words ask for help? Why did she say she needed a Doctor? Why does she describe her parents as frustrating and not helping, noting that Mom talks to much and Dad needs to control his volume? Why are some people comforting their worries with Dad's words, and yet much of the Autistic community find his words disturbing?

Why didn't Carly sign off on the interview?

One of the things I have learned in communicating with Autistic people, family and friends, is that I need to give all the time necessary for a response. I can hurry the process and speak too soon, interrupt authenticity, and project myself upon the person, or, I can allow them to process in their time and respond with their truth. The waiting causes me discomfort, but it's well worth it.

Let's remember, Carly has waited a long time for us to understand her.

For all I know, Carly's father has said nothing untrue, it's just not good enough to settle me. We all must respect Autistic communication as varied and complicated as it comes. As parents, we should protect the silence in which our Autistic children gather themselves to speak, and promote the voices of Autistic adults, like Carly. Never should we speak for or over them.

Carly, I will gladly wait for your truth.