#StopCombatingMe: Enough. And not Enough.

Image Description: Black Box with white surrender flag. Text: Surrender is powerful when your war is unjust. Peace, Love, & Support for Autistic people. #stopcombatingme loveexplosions.wordpress.com

Image Description: Black Box with white surrender flag.
Text: Surrender is powerful when your war is unjust.
Peace, Love, & Support for Autistic people.

The Combating Atutism Act is expires this fall.  As written, it is a source of national shame..  It is, therefore, imperative that this legislation be completely overhauled.  Or it must not be renewed.

My Autistic child will always be my child.  But someday, she will be my adult child.  I regularly get grim glimpses of her future through my involvement and friendships with Autistic adults.

The vast majority of Autistic adults that I know, and I do know many, live in crushing poverty–constantly facing lack of suitable employment opportunities, deciding between heating their homes or buying food, denial of access to needed medical treatment, and so much more.   They lack the supports and accommodations that they desperately need in order to survive.

Autistic people, particularly Autistic adults, have been forever under-represented and under-served.  Our legislators have failed to incorporate input from those that Autism legislation is intended to serve–that is, of course, assuming that Autistic people are the intended beneficiaries.  It would be unthinkable to pass legislation which dismissed the advisement of the population of any other minority group that  it is intended to serve.   Not the parents/caregivers of those minority groups.  Not the big name “charities” claiming to represent the interests of Autistic people, all the while, completely excluding them from meaningful participation.  But the stakeholders themselves.

My eight year old daughter deserves a future and Autistic adults deserve a present.  They are entitled to essential supports across their lifespans.  Reallocating funding so that she, and other Autistic people, have access to education, employment opportunities,medical treatment (especially preventative medicine), etc. will serve the interests of both the Autistic community and the country as a whole.

And for the love of all things holy, rename the legislation.  Combating Autism Act?  That’s a disgrace.  It underscores the fact that the current legislation is focused on eliminating Autistic people rather than supporting them.  Using violent language to describe legislation allegedly designed to enhance the lives of Autistic people and their families is reprehensible.  It is, in effect, sanctioning the dehumanization and discrimination that Autistic people, including my child, face every single day.

Enough combating human beings.  Not nearly enough support.


scorch the earth #lovenotfear

scorch the earth
This post was written as a contribution to the “Love not Fear Flashblog” presented by Boycott Autism Speaks.

You are my child.  You are the child that I have.  And the very child that I wanted.

Your Autistic body is exquisite.
May it always respond to you.  To your will alone.
You owe your gaze to no one.
May you rest it only on that which offers you contentment.
Your flapping hands express your joy.
May they laugh at those that seek to make them table ready.

Your Autistic spirit is on fire.
May it burn bright in sight of those who would extinguish it.
You owe compliance to no one.
May you incinerate the intentions of all those who would force it.
Your worthiness of humanity is infinite.
May it ignite the blazes of love and acceptance to which you are entitled.

Every part of you is Autistic.
And I love every part of you without qualification.
There will never be a “but” after my love.
May we scorch the earth of all that endangers your selfhood.

champions of social equality

Image Text Reads: You're not actually for equality when you would deny Autistic people the right to--or belittle Autistic people for speaking in favor of their own existence.

Image Text Reads: You’re not actually for equality when you would deny Autistic people the right to–or belittle Autistic people for speaking in favor of their own existence.

It is pretty trendy to call yourself a champion of equality.  But here’s the thing folks.  Being a champion of equality?  It means just a smidgen more than being for marriage equality.  Being a champion of equality?  It means just a titch  more than being for gender equality.  Ahem, The Femisit Breeder.

I am NO expert on equality and all that it implies.  Because I am limited both by my own privilege and by my relative inexperience.  But I do know enough to shut up and listen when people of a marginalized group tell me that I should check my privilege, that I am being a bigot/racist/sexist/ableist/whateverist.  I don’t keep talking… unless it is to ask questions.  No, not the kind of questions that aren’t really questions but jabs.  The kind of questions that help me take baby steps towards understanding.

So when a self-proclaimed feminist makes a statement like this one:

I’ve legitimately seen it all now: Apparently I’ve attracted a whole subgroup of folks who think that we shouldn’t be trying to prevent/treat/cure Autism because it’s not a disability, it’s just like being “gay or dark skinned” and if you want to prevent/treat/cure it, then you’re discriminating against the ASD community. 
*Sigh* Congratulations Internet, you’ve jumped the advocacy shark.
–Gina Crosley-Corcoran (The Feminist Breeder)

My jaw hits the floor.  And then I read this from the same person:

I agree it’s totally up to the individual whether they want to be treated, and high functioning folks probably don’t feel they’re missing out on anything. But think about low functioning kids – those kids who’ll never be able to lead a normal life – how can we seriously say that it’s wrong to try to prevent that kind of disability? Being unable to care for oneself is not a “variation of normal” or any other such nonsense. It’s a disability. Of course these people should be treated with care and compassion, but it is not something we should be trying to promote. I find it wildly irresponsible that this so called “neuro-diversity” movement is trying discredit autism prevention and treatment measures as “discriminatory.” If there was a way to prevent depression and anxiety, you better believe I’d support that.

And now I am PISSED.  Because I know that she is referring to people like my daughter. People like Amy Sequenzia, Henry Frost, Amanda Baggs, and Emma.  And I am also damn near certain that she has never actually spoken to any of these “low functioning” people.  Because she obviously doesn’t understand that someone can be far from typical and still happy.  Still a valuable human being.  She obviously doesn’t get that the ability to perform personal care doesn’t guarantee or negate quality of life.

So Ms. Crosley-Corcoran, and the too many people like her, are not actually championing social equality They are championing….well… THEMSELVES.  These people don’t actually give a rat’s ass about ACTUAL social justice.  No.  They are trying to disguise their personal endeavors to acquire power and privilege.

Actually, Ms. Crosley-Corcoran doesn’t really even understand what privilege means.  What the mother?  Huh?

I’ve noticed the same, and I think those folks oughta check their privilege. To be so high functioning that you can see it as a gift is a privilege that so many in the ASD community do not possess. My best friend’s child has ASD and his care consumes her life.

Do you remember when Paris Hilton participated in the “Vote or Die” campaign?  And then it was revealed that she had never actually voted.  Or even registered to do so?  This is all sorts of shades of that.  It is hip to be pro-equality.  Even when you don’t have any idea what that means.  Even when you are clearly and unabashedly NOT for equality.

Social equality.  It is not just a thing that the goofy celebs and wannabe celebs are doing for kicks.  It actually means something.

If you are for it, it means that you believe that ALL people are entitled to the same rights under the law.  ALL people should have equal access to civil rights, to healthcare, to education, etc.  When you exclude a population of people  by claiming that preventing them from existing is acceptable…  you’re DEFINITELY not even close to being for social equality.  You’re just another self-serving douchebag trying to grab yourself some power.

Please check out: Divergent: when disability and feminism collide

Tone it down

Tone Policing.  Please stop doing that.

tone focus

What is tone policing?
I’ve created some examples based on what I see people saying.  Often.  Too often.  Tone policing doesn’t just apply to Autism Speaks discussions.  But that’s what’s on my mind lately.

Example 1:
Person A:  Autism Speaks is a horrible organization which promotes the hatred of Autistic people.  Giving your money to them is funding a hate organization.  I am Autistic and you’re financing hatred of me.
Person B: I agree with you but people are just going to dismiss you as cranky and angry if you take that approach.  You need to gently educate people if you want them to listen to you.

Example 2:
Person A:  You shouldn’t support Autism Speaks because only 4% of its budget is used to provide direct services to Autistic people.  Autistic people are excluded from meaningfully participating in the organization as leaders and in the organizations efforts.  Further, the co-founder of Autism Speaks, Suzanne Wright, recently wrote an op-ed which promoted bigotry of Autistic people.
Person B: I agree with you but why do you need to say negative things about Autism Speaks?  Can’t you be for positive things without being against Autism Speaks?  It would be better if everyone just let all organizations do their own thing.  Concentrate on what you’re for instead of spending your time and energy on what you’re against.  You need to move on and be positive.  And stop being so angry.

Example 3:
Person A:  I can’t believe that you gave Autism Speaks money after you’ve seen all of the harm it does.  Autism Speaks is horrible.  It dehumanizes Autistic people like me.  Parents should be aware of how evil this organization is.
Person B:  You’re so angry and hostile.  I don’t want my Autistic child to be anything like you.  Why don’t you mind your own business?  Your hostility is dividing the community and if you keep acting like that, we will never be able to work together.

  • Tone policing is derailment.  It shifts attention away from the topic and content.  Often that is the objective of the person doing the tone policing because he/she is attempting to take the focus off of what he did wrong.
  • Tone policing often attempts to invalidate/diminish a valid argument because the victim is angry/emotional/passionate/negative.

Tone Policing Observations

  • I cannot think of a time when I have seen a person who is doing the tone policing also be the person who is right.  Probably because when you are actually right, you don’t have the need to shift the argument away from the topic.
  • Victims of tone policing are often the victims of oppression.  Aggressors of tone policing are often people in a position of power/privilege

You’re too angry to be right!

  • A person’s emotions–his anger, his passion, etc.  have not one thing to do with whether or not he is also correct.
  • Expecting a person who is or has been victimized to talk unemotionally about the topic of his victimization is incredibly inhuman and unreasonable.

Let’s think about the absurdity of tone policing in the context of a rape victim and rapist.

Rape Victim:  You’re a horrible person.  What you did to me is wrong.  I hope you get put in jail for the rest of your miserable life.
Rapist:  You are so angry and overly emotional.  How do you expect me to have a discussion with you when you can’t control your emotions?  We can talk about this when you’re more calm and less negative.

Can’t you be more positive, constructive, less negative, etc?

  • There is something really disingenuous and unkind about demanding that people be positive about things.  Everything is not always positive.  Demanding people frame it as such is dismissive.  Especially when we are talking about people with privilege making the demand of people without privilege.
  • Negativity is often necessary.  You cannot build an argument for why something is wrong, evil, in need of change, (a hate group) without pointing out the negative.
  • In order to be constructive, it is often necessary to be destructive first.  I cannot build a new house on a lot where a ramshackle one sits unless I deconstruct the old one. Getting a permit to demolish the old structure may require that I prove that it is not salvageable, dangerous, a public hazard, etc.

For the “you’re right but…..” crowd

  • When you agree with someone, don’t tone police them.  It is not helpful to propagate the belief that a person’s emotional state is relevant to how valid his argument.  By discussing emotion instead of addressing the issue, you are derailing.  It is possible to unintentionally derail.
  • Hearing another person speak passionately and emotionally about a topic can make us feel uncomfortable.  However, we should not expect people–especially victims of wrong-doing to take responsibility for making us feel more comfortable and advocate for change.  This is a selfish request/expectation.
  • Often, one of the reasons a person is angry is because he tried asking politely/unemotionally/whatever and was ignored.  Don’t assume that a person hasn’t already tried asking nicely.
  • Some people are unwilling to separate the anger from the content of the message. That’s unfortunate.  If you believe a person is correct, don’t add your voice to those focusing on tone because that is not helpful and only serves to lend credit to those trying to derail.
  • If you want to be helpful, encourage those perseverating on tone to address the actual argument.  Signal boosting the points of the angry person in a “nice” tone can also be effective in reaching those that are incapable of understanding the composition of an angry perspective.

Anger is effective

  • We’ve all heard about the squeaky wheel and the grease.  And it is true in many cases…especially civil rights.  Civil rights have not, historically, been granted to those that are just so darn persistent in making polite requests.
  • Angry/emotional people are typically the ones most invested in the topic.  If those people are excluded from participation on the grounds of tone/emotion, that is pretty much a guarantee of failure to effect change.  Further, it is unfair to expect those who have the most at stake to sit out because they can’t play nice.

So tone policing.  Stop it.  Okay?  And also read this post by Chavisory’s Notebook because it is better than mine.

Kelli Stapleton. Still relevant.

It was always directed toward me.  Her um anger and aggression.  Always toward me.  I wondered if that was a consequence of doing a Lovaas replication program.  Because I’ve been in her face since before she was two years old.  It was always touch your nose.  Touch the apple.  Do this.  Do that.  And you know, um, maybe this is sort of a natural consequence to that.  I’m not really sure.  But I’m sure at this point it is some sort of shaped behavior.  Because sometimes even making eye contact with her will trigger a response.  (Kelli Stapleton–full interview here)

There is no doubt that the tragedy involving Kelli Stapleton and the attempted murder of her child belongs in every single conversation around Autism “treatments”, bullying, and the way that some parents of Autistic children habitually devalue and dehumanize their children.

The fact that so many parents are still willing to make the claim that Kelli’s attempt to murder her own child is “an act of love” means that her name and the road she traveled to get to the place where she was able to harm her child needs to be brought up again and again.

We need to examine.  To scrutinize the ill fated journey that she took to get to that place.  It is uncomfortable.  It is painful.  And it is entirely necessary to talk about that heartbreaking topic.

The how and why are so very important.

The easiest answer is that there aren’t enough services.  That there aren’t enough supports for Autistic people and their families.  And while it is true that Autistic people are in desperate need of more direct services and supports, we cannot say that lack of services are to blame for Kelli’s attempt on her child’s life.  Issy had just come home from an extended stay in a residential facility and Issy had around the clock care.

So we must look elsewhere for our answers.  I believe that the answers are in the way, even as parents, we have come to see Autistic people.  Not fully human.  Not worthy of the rights and respect that most of us take for granted.

If you read Kelli’s blog, you will not think it unlike many blogs written by parents of Autistic children.  For instance, you probably would not dream of posting a video of a typical teenager at his most vulnerable moment.  But parents of Autistic children do so habitually.  When either of my children are having a challenging moment, the furthest think from my mind is snapping a picture of myself comforting her.  Or capturing a video of a meltdown.  These are sacred moments where my child needs me.  Where I am thinking, only, of making sure my child knows that I am present and loving her with my entire being.

Capturing media as fodder for one’s blog should be about the furthest thing from one’s mind.  And I don’t believe that it is with this type of parent.  The martyr mommy/daddy.  Sure they can claim that they are trying to help other parents not feel so alone…or whatever the party line is.  But even if that is true, if my belief that they are attention seeking is wrong, they are doing so at the expense of the privacy of their children.  “Helping” other parents should not override the sacred trust of a parent/child relationship.

Parents prone towards these acts of betrayal of their children are not merely poor parents.  Because the ones that I’ve seen and am speaking of are also prone towards despicable acts of emotional and verbal abuse towards Autistic adults that are brave enough to face their wrath.

This tells me that these parents have devalued, not only their children, but Autistic people in general.  This should not be exactly surprising given the culture of hate and systemic dehumanization of Autistic people that we are entrenched in.  Nonetheless, I continue to be shocked by the lengths that these parents are willing to go to viciously bully Autistic people.  They wield their advantages of the power differential in shocking and despicable ways and maintain the nerve to cry out that they are the victims of discrimination.

Discrimination is a combination of power and prejudice.  Autistic people lack power.  They are a minority group and victims of all sorts of things like media bias, systemic oppression, marginalization, etc.  Autistic people are capable of bigotry.  But they are not capable of the type of discrimination that parents of screaming about.  The continued insistence that parents are the victims is offensive and only serves to underscore the fact that these loud parents are ignorant about what it means to be part of a minority.

I wouldn’t worry so much about what these foolish parents say.  Except that they are so damn loud and aggressive.  I cannot stand the thought of their voices–the voices of murder apologists– dominating the conversation around my daughter’s neurology.  The thought that they are perpetuating the Autism Speaks’ fear and tragedy stereotypes make it impossible for me to ignore them.

And so I stand with the brave Autistic adults, who are regularly targeted and viciously attacked by this insidious tribe.  I stand with them because they are awesome and courageous and kind.  Yes.  Because they are my friends.  Yes.  But also because every single time they hang their necks out,knowing full well that they will be targeted and abused as a result, they are hanging them out for my daughter.

So I’m selfish.  And I’m grateful with every fiber of my being.  As such, it is my moral obligation–the moral obligation of every single parent of an Autistic child out there, to use our advantages to support the creation of a world where our children are seen as whole and valuable human beings.  That starts with the recognition of the fact that the assault against the humanity of any Autistic person is as good as an assault against our very children.

pacla new year

Why? Why? Why?

“We love how Evie is always happy & smiling.”

This is a picture of the note that Evie’s para educator wrote yesterday.

evie note school

Today her note was short.

“Great Day!  So happy all day long!”

This is my Evie.

Full of love.  Full of life.  Full of happy.

This is my child.  And I love her with every corner of my being.

I’ve been labeled as radical–part of a fringe movement.

When did a mother’s love for her child become some sort of unthinkable political statement?

Here’s the thing.  Evie is Autistic.

My love cannot be contained in those tragic little boxes that it is supposed to fit in when you’re the mother of a non-speaking Autistic child.

And I don’t try to confine it.  So it explodes out all over the world.

Just like it has always done.

Because freaking damnit!

Evie deserves more love than I will ever be able to give her.

And I have all of the love.

Just like all parents do.

And poor Evie.

On paper, she looks like a good poster child for the Autism tragedy story.

Non-Speaking.  Insomnia.  Needs full personal care.  Needs 24 hour supervision.

I know that many of you are thinking that Evie should have come with her own melancholy violin soundtrack.  And probably me too.

Because that’s what you’re taught to believe.

But I am here to tell you that all of those Autistic despair ticker points blend into our life.

The hardest part of having an Autistic child, for me, is dealing with other people.

And the fear that grips my soul and makes many of my nights sleepless is that Evelyn is growing up in a world that hates her.

Growing up in a world where her life does not have the same value as your child’s life.

Because Evie is Autistic.  And your child is not.  Real life example, my child could be denied a life saving organ transplant because she is Autistic.  No, that’s very real.  Not made up.  And don’t, for a second, think that doesn’t cross my mind every time we visit her cardiologist.

And how do we get to a place where Autistic people are not considered as worthy of a heart as non-disabled people?

Well I will tell you.  The Autism factory.

Autism Speaks.

Yeah, I know it is the only Autism “charity” that you’ve heard of.

And oh boy do they do a great job of spreading “awareness.”

Please tell me…the co-founder of which other charity would say this about the population they claim to represent?  “Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.  “

Or can you let me know, pretty please, why I shouldn’t be outraged that Autism Speaks churns out videos where a board member talks about wanting to drive their kids off a bridge IN FRONT OF THE CHILD in the name of “awareness”?  And all like it is normal and natural to feel this way.

That’s not awareness.  That’s abusive.  That’s a person teetering on the edge of criminality.  And in no other circumstance would this be acceptable.  Only if you’re the mother of an Autistic child.

And all of the world sees this propaganda–because it is Autism Speaks.  They have what seems like an infinite budget to describe Autistic children as monsters.  As money-sucking burdens to their families.

As completely and utterly worthless.  No I am not being dramatic.  Because you don’t spend gazillions of dollars trying to prevent and cure children that are not Autistic.

And that’s what Autism Speaks spends their money on.  Churning out fear of Autism.  And telling the world that we need to wipe out the existence of these beasts.

And I’m not supposed to be angry to have my child described to the world in this way.  I’m not supposed to rant or use harsh language to describe the fact that this organization is promoting the hatred and bigotry my child will live with every day for the rest of her life unless something changes.

I’m not supposed to be angry that other parents think it is acceptable to KILL their Autistic children.  Never would the majority of the population defend a mother who tries to kill her child….unless that child is an Autistic burden.

It is somehow outrageous that I would say that I have never dreamed about killing my child.  That I don’t fantasize about some non-Autistic version of her.  I’ve been dubbed “sanctimommy” and called a liar for saying that I am not jealous of parents to non-autistic children.

I am quite literally an outcast for loving my child the exact way that she is.  Other parents are expected to love their children without restriction or condition.  My child is Autistic.  I am expected to want to change/cure/prevent/fix her.

I’m not sorry for loving my child.

I’m not sorry that I’m angry.

I’m not sorry that I don’t think my child is a monster.  Or that my life doesn’t look anything like the one that Autism Speaks would like you to believe I lead as the parent of one of those full on Autistic kids.

No.  I will not feel guilty for feeling blessed to have this amazingly perfect specimen of a child as my own.  I will not hide my pride for her.

I will not play nice with the people that seek to diminish her human worth to the point that her life could very well be endangered.

My daughter is perfect.  I want to change the world.  Not my daughter.

This is why I support a complete boycott of Autism Speaks and all of its affiliates.  And I am asking.  Rather begging for you to please take one second out of your life and sign the petition right here.  And if you’re feeling extra kind, like our facebook page.

I’m asking you to do that for Evie.  My laughing happy girl.  I am asking you to do that for me–her adoring mother.  And PS–as the organizer of the petition I will know whether or not you care as I have access to the list of those that sign.  I am only half kidding about the caring part.

What were you saying after Alex? Issy?

Now we can add Jaelen– 13 years old and Autistic, and his sister Faith–10 years old to the growing list of children killed by their own parents.

If you were saying that the parents deserve empathy and compassion for the burdens they bore, will you be saying that, again, this time?

There are few details available at this time.  But the mother–the murderer– apparently sued the federal government because she believed the vaccination caused her son’s injury.  She, apparently, lost last year.

But details have a way of emerging.  As we’ve seen too many times.  And I fear.

I fear.  I fear.  I fear.

I fear that I will hear more about the tragic lives of parents–raising their Autistic kids.

I fear.

I fear that we will hear more of the same from that vocal group of Kelli Stapleton supporters.  I fear.

I fear that they will say, “See, parents need help!  The system is failing them!  There aren’t enough supports!”  I fear.

I fear.  I fear.

I fear that they will not look down at their hands and see that there is even more blood covering them.  That they are up to their elbows in blood.

That they will not see that it is only a matter of time before we are all drowning in the blood of our disabled children.

I fear that they will refuse to see that the narratives that they are choosing for these stories are deadly.

The gory pattern is unmistakable.

The gruesome language that is used to describe disabled children, the systematic devaluation of their very existences, the narratives about parents needing more, more, more… it is contributing to this pattern.

And to those that are speaking these words..

You are culpable.

And the more you speak them, the more inextricably implicated you become.

You’re culpable.  Stop.

touch nose. gummi bear: what is aba and why does it suck?

After starting this post, I realized I was overly optimistic about containing this series to four posts.  I’m going to need to expand the series to do the topic justice.
Touch Nose.  Gummi Bear: ABA in our Family
Touch Nose.  Gummi Bear:  What is ABA and why does it suck?
Touch Nose.  Gummi Bear:  Why treatments designed using ABA are all the suck
Touch Nose.  Gummi Bear:  If ABA is sooooo bad, why is it used so often?
Touch Nose.  Gummi Bear:  Voices of Autistic Adults.  Adult Autistics who are willing to take a brief survey.  Click here.

What ABA is and is Not

I think that I have had a moment of understanding about ABA(Applied Behavior Analysis).  I am going to attempt to share what I think I’ve learned…what ABA is and isn’t.  If you already have a solid understanding of this—skip this part because it is kind of boring.  But I would caution that MOST people don’t—even those writing law which mandates ABA treatment.

ABA is, in the most simple terms, a “research methodology” (Schreibman, 2007).
ABA is not “a treatment for Autism” (Schreibman, 2007).

It doesn’t change my opinion about the treatments which are developed by the ABA process.  But it does explain why so many different treatments are called ABA (in reality designed using the ABA process); yet look so different.

I’m going to try to illustrate this using an example.  I use a computer to design a virus which causes the entire US economy to crash.  We wouldn’t say that the computer is the cause of mass devastation.  We would say that the virus is the cause of the devastation.  The computer can still be used to do good things.  (In the case of ABA, I actually still think the computer is pretty much always bad, but will get to that in a bit).

So let’s start by talking about what ABA really is.  I already explained that it is a research methodology—and I’m sure that I’ve oversimplified that but go easy on me.

Applied:  Socially significant behaviors are selected.
Behavior:  The behavior must be objectively measured and changed.
Analysis:  “An experimenter has achieved an analysis of a behavior when he can exercise control over it.”  (Baer, Wolf, & Risley, 1968, p. 94)

Baer, Wolf, and Risley described ABA as “the process of applying sometimes tentative principles of behavior to the improvement of specific behaviors, and simultaneously evaluating whether or not any changes noted are indeed attributed to the process of the application.” (Baer, Wolf, & Risley, 1968, p. 91)

ABA is Inherently Unethical
When I originally endeavored to write this series for my blog, I didn’t realize that there was a distinction between ABA as a research methodology and what are commonly referred to as ABA treatments—treatments for Autism which were developed using the ABA process.  They are used, interchangeably, even in law.  With this understanding, I realized that I will need to examine both the ethics of the methodology and the treatment.  In this post (which will be quite boring, sorry), I will strive to reveal the intrinsic immorality of the ABA process as it relates to how the process is applied to Autism treatments.

Often, when I speak to people about treatments designed using the ABA process, they claim that that the treatment that they are employing for their children is not like Lovaas, for example.  And that’s great because Lovaas type programs are abhorrent.  But here’s what we need to keep in mind.  ANY program which is designed on unethical theory is inherently iniquitous.

Let’s start with the Applied.  In order to be applied, behaviors are selected that are meaningful and socially important must be targeted.  This almost always (when the rights of others are not being infringed upon), unquestionably, falls outside of scientific capacity.  It requires subjective decisions to be made about behaviors by fallible and biased human beings.    What happens when human beings make judgments about which behaviors are important?

We get Autistic children touching their noses on demand in exchange for gummi bears.  Touch nose.  Gummi Bear.

I challenge anyone to make a case for scientific guidelines for determining which behaviors are and are not meaningful and significant for society.  CANNOT BE DONE.  What happens when people try?

We get Autistic children being coerced into quiet hands.  Into making eye contact. 

If you don’t agree with me that these are not behaviors that should be subjected to modification?  Well, that just illustrates my point about subjectivity.

One of the things you will hear behaviorist say is that in the field of ABA, behavior is treated as a function.  Which is why I find it so hard to understand how they miss the boat so often.  Behaviorists are given free reign to label things like eye contact and self-stimulatory behavior as maladaptive.

But they routinely ignore that the function of these behaviors are, in fact, adaptive.  I’ve lost count of how many Autistics have told me, “I can listen to what you’re saying, or I can make eye contact.  I cannot do both at the same time.”   The identification of these divergent behaviors as needful of modification restricts the access of Autistic people to the behaviors that they have adapted in order to function.  I fail to understand how anomalous behavior (of which adaptive function is habitually ignored) is worthy of modification.  Behaviorists have proven, time and time again, an intolerance to Autistic characteristics and the way that they manifest themselves in behaviors.  It is not okay to decide that self-stimulatory behavior is worthy of modification—especially when we slap labels like “scientifically proven” and “evidence based” on these decisions.

Further, even if we examine behaviors which infringe upon the rights of others, is modification the right strategy.  Let’s say that every time I put my daughter in her car seat, she hits me.  She is violating my rights by hitting me, right?  Does it make sense to modify this behavior when we don’t even know why she is hitting me?  Is it ethical to focus in on the hitting behavior?

I say, no.  I say there are a myriad of reasons for which she could be hitting.  Maybe there is something sharp in her car seat.  But I’ve ignored this possibility and just assumed that she is hitting in protestation.  By pursuing behavior modification of this behavior, my child is endangered.  Both by the sharp thing in her seat and by the fact that I have taught her that communication is not valued.  I’ve also taught her that she cannot count on me to meet her needs.

Can we talk about the analytic part of ABA now?

The result of this, mostly, unchecked control ignores the value of an Autistic person’s right to bodily autonomy.  The implications of this cannot be overstated.  Modification of subjectively selected (very rarely by the person receiving the treatment) behaviors, behaviors which are rarely infringing on the rights of other members of society, is considered of higher worth, than the most basic of human rights.  Hence, the human rights of Autistic people are considered not equal to the rights of non-autistic people.

We all have behaviors which may be judged by others as socially unacceptable, bizarre, and/or maladaptive.  But are we willing to permit other people to draw, not only, conclusions that these behaviors are not meaningful to us in some way, but to relinquish our autonomy to another human being to exert control over them?  I’m unwilling to do so.  Is my daughter, and other Autistic people, not entitled to this same sovereignty?  To answer this question with, “no” is to debase Autistic people.  To designate Autistic people as less valuable human beings.  As my Autistic friend K from Radical Neurodivergence Speaking will tell you, “I’m not a real person anyway.”  Is she right in your eyes?  Not in mine.

But, but, but…ABA works!

Lots of things “work” that are intrinsically wrong.  But what do they work to do?  Let me point out the obvious—just because something “works” that doesn’t mean that the end result is a moral accomplishment.  Guns work to kill people.  But is what they work to do an ethical victory?

Or really any worthwhile accomplishment.  I leave you with the example of, “Touch nose.  Gummi Bear.”  Yes, behavior modification can teach my daughter to touch her nose on demand in exchange for a gummi bear.  I’m wondering how on earth this is socially significant.

Further, and more importantly, I am wondering how and why we are making the assumption that my daughter does not know how to touch her nose.  The presumption is that she is incompetent.  That she does not know how to touch her nose.  It ignores the fact that there are any number of reasons why she may not be touching her nose when I ask her to—including that it is ridiculous to repeatedly ask her to touch her nose.

Because I was curious.  I intended to tell my three (almost four year old) to touch her nose repeatedly.  She complied two times before saying, “Why are we doing this?  I don’t want to.  Let’s paint.”  And then she got off her chair and went to get the paint.  Should I assume that her non-compliance with my demand means that she does not know how to touch her nose?  Should I demand that she continue to touch her nose to prove that she has, in fact, mastered the skill?  Or can I assume that it is absurd to continue to insist that she do this to demonstrate she understands?  Shouldn’t we be doing…oh I don’t know…ANYTHING else?

Oh!  In case you missed it above:  Adult Autistics who are willing to take a brief survey about their ABA experiences, Click here.  Trigger warning for ABA questions.  This is not a survey for parents of Autistic children.

touch nose. gummi bear: ABA in our family

This will be a series:
Touch Nose.  Gummi Bear: ABA in our Family
Touch Nose.  Gummi Bear:  What is ABA and why does it suck?
Touch Nose.  Gummi Bear:  Why treatments designed using ABA are all the suck
Touch Nose.  Gummi Bear:  If ABA is so bad, why is it used so often?
Touch Nose.  Gummi Bear:  Voices of Autistic Adults.  Adult Autistics who are willing to take a brief survey.  Click here.

The time has come for me to write the dreaded ABA posts.  Dreaded by me because it isn’t the kind of thing that I write well.  Dreaded by some of you because you think ABA is where its at.

I’m compelled to write it because I believe it was one of the factors that contributed to Issi Stapleton’s physical reactions.  I’m compelled to write it because I’ve seen, first hand, the effect it had on my daughter.

If you use ABA, please don’t go into defense mode.  There are some things that ABA has branded as ABA that are not the intellectual property of ABA.  Some of these things, I like and am fine with using as tools for Evelyn.

  • Data Collection–when used as a tool to determine antecedents to meltdowns, seizures, etc.  I do not like data collection to determine if a student has mastered a skill.
  • Breaking down tasks into small steps
  • Visual schedules

Our family’s history with ABA
So, I thought I would start by telling you about our family’s experience with ABA.  When Evelyn was still in Early Intervention, PECS were introduced by her speech therapist.  At the time, Evelyn was probably nearly 3 and was still verbal; however, she was mainly using consistent speech approximations and signs.  She was not yet stringing words together.
I admit to having had a bee in my bonnet about PECS right off the bat.  I was told that when we were doing PECS, we could only honor requests Evelyn made using the picture symbol.  If she signed or verbalized, we could not honor it.  And it was not counted as a success.  I was also told that giving Evelyn access to the PECS was “dangerous”.  It had to be implemented in this very strict way–you know with the trials and the recording of data, etc.  So, admittedly, I didn’t buy into PECS.  I was also at a point where I was obsessed with Evelyn’s verbal communication.
Evelyn stopped speaking and signing shortly after she began using PECS–I’m not attributing this to the PECS in anyway.  She entered Early Essential Education when she was three and continued working on the PECS.  I believe, at this time, discrete trials were introduced and I think I heard about the words “table ready” but didn’t give them much thought.  Evelyn was not making significant progress in any area.  Her EEE special educator suggested that we apply for ILEHP.
ILEHP is, theoretically, a utopian interdisciplinary collaboration–think medical, PT, OT, SLP, social workers, etc.  We were to come up with three questions for the team to answer.  At this point I don’t even remember what the three questions were.  I do remember that I was perseverating on Evelyn starting to verbalize again and was majorly down on PECS.  I also remember that this is the first I heard of ABA.
They showed a video of a young child “working” on this chain of tasks.  She did it with such efficiency and focus, I was truly impressed.  I didn’t ask enough questions or give it enough thought at the time.  Had I really thought about it, I probably would have seen that the child was performing like a robot.  And the tasks were not practical.
During EEE, I didn’t agree with her speech therapist in a lot of ways…and I can see where my thinking was incredibly flawed by my desire for Evelyn to verbalize.  But her SLP and Developmental Educator were totally great.  I have doubt of their respect for my daughter.
Fast forward to Kindergarten.  I believe, at this point, Evelyn started receiving services from the school’s Autism Specialist daily.  I believe I insisted on this.  BIG MISTAKE.  Enter the school’s Autism Specialist–BCBA spending a good deal of time with my child.
And then, where Evie liked school previously, she no longer did.  Coincidence?  I think not.

From an email I wrote shortly after  it started January 16th, 2012.

I am really concerned that it sounds like Evie is biting and protesting (flopping to the floor) so much at school. I think the breaks without stimulation mentioned above will help. I would like to see more data about this in Evie’s daily notes home. I am concerned that she seems to be feeling so frustrated and am wondering how we can make this situation better. Please have S and whoever else works with Evie make a note of what happens and when and I will see if I can come up with any ideas. J mentioned that she has a different theory and approach when Evie flops than we do at home. I can’t remember if you’d already left. J said that you guys make Evie follow through on the request to say wash her hands as she doesn’t want to reinforce the protesting behavior. While I can see where J is coming from, I disagree when it comes to Evie. We find that ignoring the protest for a minute and giving Evie a moment to collect herself works best in that she calms down quicker. I don’t feel that it reinforces the behavior as she still needs to follow through. We don’t like forcing Evie to do anything unless she is exhibiting an unsafe behavior like biting. I am guessing that other children at the school protest occasionally and that they are not physically forced to meet the request of staff. I don’t want that to be different for Evie.

And then came the reply from the Autism Specialist:

In my observations, I noted a contrast when staff waited for her to stand up after flopping. If the same direction was given, she would flop repeatedly and become more distressed. In effect, she was less likely to comply with the direction and became more resistant to prompting. Staff rescinded demands a few times. The data thus far indicates that the flopping and biting occur when she is directed to do something she doesn’t want to do or is thwarted in her pursuit of desired items/ activities.

In the field of Applied Behavior Analysis, behavior is treated by it’s function. Rather than a universal response to a developmental age, the purpose of the behavior is used to determine programming. I do believe that the behaviors are being reinforced as the immediate consequence serves the function of avoidance/escape and the behaviors increase in frequency and intensity after (the definition of a reinforcer). In addition to the skill building (appropriate communication, receptive comprehension) and proactive interventions (prevention, reinforcement for following directions, visual supports), it is important to interrupt the reinforcement she is getting for these behaviors. We deliberately implement reinforcement contingencies to teach and strengthen behaviors. Similarly, It is important to interrupt unplanned contingencies that serve to strengthen maladaptive behavior.
Prompting is a large component of the errorless instruction (DTI) that has been successful with Evie. Prompts are used to set her up for success and reinforcement. This is the goal in all learning situations. It is not to force her in isolated situations, but to implement evidence based procedures to teach skills. Data will be collected to monitor progress. I will compose a draft of a behavior plan, including proactive programming, to review with the team.

Several emails later from me:

I never meant that Evie should be allowed to refuse certain requests indefinitely. My experience with Evie is that giving her a second and then immediately transitioning into the activity is very effective. If staff is rescinding requests, even if only occasionally, I believe that does, indeed, reinforce negative behavior.
I do not feel that biting or interrupting the education of other students is ever acceptable. However, I maintain that I do not want my child to be physically forced to comply with other requests at this time before giving her an opportunity to collect herself–like ten seconds is what works at home. I think it is essential that we bear in mind that Evie’s autism diagnosis is a secondary diagnosis to the constant discharges she has in her brain. It was explained to us by the child development clinic (Susie was present for the evaluation and diagnosis) that these discharges cause autism like characteristics. Therefore, the requests that are made of her may not be able to be realistically met–she needs time to process demands. I think we need to start at the beginning–identifying stressors, perfecting the procedure, and collecting enough data to allow an accurate interpretation.
I want to work collaboratively with this team. But I must be honest and let you know that I see a lot of backsliding this year that I can’t help but attribute to the fact that we haven’t stuck with what works with Evie–the schedule, the breaks that her neurologist indicated, etc. In a lot of ways, I am concerned that effective parts of Evie’s program from last year have–aside from speech and language–have been abandoned resulting in a change in her behavior. I feel that further discussion is definitely warranted–I would like to sit down as a team with last year’s team to discuss her program last year and the outcomes of the ILEHP program that we participated in.

That was when it really started to dawn on me.  Something is not right here.  Evie was a happy kid–did not engage in physical aggression at home–or very rarely.  When she started getting ABA’d, the physical reactions started.  As time went on, I became more and more convinced that ABA was at the root of her unhappiness at school and the physical reactions in which she was engaging.

The Autism Specialist and I argued back and forth over this for almost two years.  She made statements that she was “not comfortable authoring a behavior plan” which allowed Evie the space, bodily autonomy, processing time, etc that I asked for.  And that her neurologist indicated was essential with regard to her medical conditions.

Most of our arguments centered around Evie’s autonomy, around the fact that the Autism Specialist repeatedly told me that ABA helped with Evie’s “deficits caused by Autism”, around my demands that she not be forced to make eye contact, and forced to have “quiet hands” or “table ready hands”.  Mostly we disagreed over whether Evie was exhibiting “negative behaviors” (her opinion) or whether Evie was communicated (mine, her neurologist’s, and psychiatrists).  And what on earth was the purpose of ABA—the title of this series:  Touch Nose.  Gummi Bear.

For the longest time, I didn’t really have the words for why ABA was not feeling good.  And then I read this.  And it REALLY didn’t feel good.  I wrote, my most popular post, to date, The Cost of Compliance is Unreasonable after reading Sparrow’s post.  At this time, my Autistic friends found me and rescued me.  After talking with them, I became more and more adament

Then I went in and observed for a day.  And that was point break.  You can read about that here.  To sum up, Evie’s WAS communicating–that she had a psoriasis patch that was itchy, that she was thirsty, that she needed space.  These were communications were ignored because the behavior they manifested in were undesirable.

At the end of the 2012/2013 school year, Evie had not made meaningful progress.  Again.  We asked that the Autism Specialist be removed from the team.  We were left with a team of people, with whom we don’t alway agree, but are willing to forgo the parts of ABA that are harmful, look at Evie’s behaviors as communications, and explore other ways to help Evie make educational progress.

We’re still waiting to see how she progresses educationally.  BUT, Evie is so happy this year.  The child that we see at home, is also the child that they see at school.  I have no doubt that the fact that she is not being subjected to ABA is the driving reason for the change in her temperament.

K. from Radical NeuroDivergence Speaking is, coincidentally, doing a similar series which I encourage you to read.  Indistinguishable from Peers-an Introduction.

the cost of non-compliance is unreasonable

In January, I wrote a post about the cost of compliance training.  The unforgivable price that our children pay when forced to be compliant.

It turns out, that the cost of non-compliance is also unreasonable– unconscionable.  Well, it was for Issy Stapleton.  Her mother, Kelli, attempted to kill her last week.

I’ve been reading Kelli’s blog.  Listening to an interview.  And reading comments left by those who allegedly worked in the Stapleton home as service providers to Issy.

If you’re reading this.  You’ve seen the videos.  The first one was little more than Kelli running around hysterically crying–I’m not going to comment on that.  But about this video, I have much to say.  Especially after watching it in context on her blog.  Particularly this part

Carly, Issy’s behaviorist, was there to make sure I said and did the right things. Basically, I just had to give her tokens for having ‘quite hands and feet’ and redirect her when she started perseverating(you know, getting stuck) on certain topics.                  

We walked into the classroom.  Issy was so happy to see me (and I her!).  I told her I was there to be her worker.  I sat down next to her and started to work on a coloring page.  Issy started perseverating, I redirected.  She got physical…

I found it very striking that the video started with Issy’s physical reaction.  We see from Kelli’s words that a few things happened.  Mainly Issy was non-compliant.  Was she reacting to being told that her own mother was her “worker”?  Being coerced into having “quiet hands and feet”?  What does it look like when Kelli says, “I redirected.”

Autistic adults routinely rail against the inhumanity of being told to have quiet hands and feet.  Being forced to be still when their bodies need to move.  Many suffer PTSD–partially from “quiet hands and feet.”

I’m morbidly curious about the perseverating and subsequent redirection.  It is suspicious that this part of the video was edited out.  I suspect that it was a physical violation of Issy’s bodily autonomy or the threat of such violation.

The video, itself, does not lead me to believe that this is an inherently violent child.  I see a child who is outnumbered by adults and has no escape route.  I see her cornered and lashing out.  After I see adults overpowering her and restraining her, I see her physical reactions escalate.

I believe, at the very core of my being, that Issy had been subjected to abusive and aversive interventions for years.  Therapies which violated her person and punished her for non-compliance.  By Kelli’s own admission in this interview, she suspected that Issy’s physical reactions were related to ABA therapy.  This is in response to the interviewers question about who the violence was directed towards.

It was always directed toward me.  Her um anger and aggression.  Always toward me.  I wondered if that was a consequence of doing a Lovaas replication program.  Because I’ve been in her face since before she was two years old.  It was always touch your nose.  Touch the apple.  Do this.  Do that.  And you know, um, maybe this is sort of a natural consequence to that.  I’m not really sure.  But I’m sure at this point it is some sort of shaped behavior.  Because sometimes even making eye contact with her will trigger a response.

Anyone who is familiar with the Lovaas ABA model, knows that Lovaas relied heavily upon aversives and punitive corrections to undesired behaviors–including failure to make eye contact and stimming.  A mere mention of Lovaas will trigger many of my Autistic friends.  We are talking strict, by the book, old school ABA.  I have many problems with ABA as it is commonly practiced, but the Lovaas model is truly reprehensible.  It is unquestionably abusive.

Issy was subjected to this for ten–ish(?) years at the time of this video according to her mother.  I have no doubt, that Kelli was right.  That this was one of the things at the root of Issi’s physical reactions.  Especially since the reactions were mainly directed at her mother until about a year prior to this interview (according to Kelli).  Since Kelli, was Issi’s “worker”, this makes sense.

Further, there have been multiple allegations of Kelli’s abuse towards her children, levied by individuals who apparently worked in the Stapleton home.  Normally, I wouldn’t put a lot of store in internet comments.  But these feel markedly credible when those commenting are providing contact info for coming forward with information.

To those care givers who would help be Issy’s voice and get justice for what was done to her please contact D/SGT House with the State police post (231) 775-6040. Several past caregivers have stepped forward and already given statements on Issy’s behalf. We need everyone to step up and help Issy.

On an earlier post I posted a number for ex-caregivers who wanted to help issy. I typed the number wrong it D/SGT Travis House (231)779-6040 he would like to speak to any caregivers. Some of us care givers have already given statements on Issy’s behalf.

Kelli regularly used hateful and abusive language on her blog to describe her daughter to the world.  If this is what she puts out to the world, I can only imagine what she kept hidden.  And according to many of the comments on this news piece, she attempted to keep much hidden.

I’m sure that we will never know exactly what went down in the Stapleton household.  But nothing that I’ve read, heard, or seen leads me to the conclusion that Issy is inherently violent.  Nothing.  I believe that Issy has always been the only victim.

We’ve seen the writing.  We know she was subjected to Lovaas style ABA which is widely criticized for being punitive and for employing aversives.  This is abusive.  We’ve seen some heavy allegations of abuse which are, apparently, being investigated.

We’ve hear the story of a child, who easily overpowered her mother.  Yet, somehow, Kelli was able to contain Issy in their family van while she attempted to exterminate her daughter with carbon monoxide poisoning.  Am I the only person with whom this does not jive?

I don’t believe that Issy was violent.  I believe that she had physical reactions to the abuse she suffered for being non-compliant.  I believe that Issy almost paid the ultimate price for her non-compliance when her mother tried to kill her.

The cost of compliance is unreasonable.  The cost of non-compliance can be even more unreasonable.