Saturday, December 13, 2014

ABA, by Sparrow Rose Jones

 [Note from Ib Grace: Remember I have been trying to get something written about ABA for you? These issues are complex and delicate, and it was taking me forever, and many words. Meanwhile, Sparrow Rose Jones of Unstrange Mind wrote this piece on the topic. Sparrow managed to negotiate everything I wanted to say, in fewer, better words. Since I have been recommending it to everyone, I'm happy to report I've obtained permission to reprint this gem in its entirety for ease of access to TGN readers. Now, back to Sparrow's words:]

This week, I watched a community implode. I’m not going to talk about that, though, because it was very painful to watch people I love being treated so badly. But a lot of the implosion centered around a topic I do want to talk about. That topic is ABA – Applied Behavior Analysis, a common type of therapy for Autistic children. I watched people fight around in circles, chasing their metaphorical tails. It will take some time and lots of words to unpack this topic, but I hope you will stick with me on this because it’s so important and there is a lot that needs to be understood here.

Here’s the argument in a nutshell. It gets longer, angrier, and much more detailed than this, but I am exhausted just from reading the fighting, so I’m boiling it all down to two statements. And both statements are correct.

Autistic adult: “ABA is abuse.”

Parent of Autistic child: “I’m not abusive and my child is benefitting greatly from ABA therapy.”

You read me right: both statements are correct. That is part of what I need to unpack today. I think the best place to start is with the fact that both people above are using the term “ABA”, but what they are actually talking about are usually two different things. First we need to define ABA.

Well, actually, first I want to put people at ease. Parents — it’s got to be painful to feel like a whole group of people are ganging up on you and telling you that you are abusing your child. You love your child. You want the best for your child. You are spending thousands of dollars out of pocket to try to give your child the best possible chance in life. You worry about your child. You feel like you never even knew what love was until your child came along. You are not abusing your child. And if something you are doing is harming your child, you want to know about it and stop it. It hurts to be told that you are abusive toward the child you love so much.

And my fellow Autistics — you grew up feeling picked apart. You were subjected to things that harmed you. You still have PTSD today from things that may have been done with your best interests at heart but were actually quite damaging. You don’t fit in to the world around you and the adults who were charged with your care when you were growing up were stumbling around in the dark when it came to trying to figure out how to raise a child like you were. It is triggering to see that so many of the things that hurt you when you were growing up are still being said and done to and about children who are so very much like you were when you were their age. You want to stop the cycle of pain and you want children to grow up happy, healthy, and loved. It frightens and angers you to see many of the “best practices” that Autistic children today live with.

And there is a good chance that the two of you — the Autistic adult and the parent of an Autistic child — are not even talking about the same thing when you say “ABA.” Major organizations (particularly Autism Speaks) have lobbied hard for Medicaid and insurance companies to cover ABA therapy for Autistic children. As a result, many therapists now call what they do “ABA,” even in cases where the actual therapy is very different from genuine ABA, in order to have their services covered by insurance. It’s similar to the philosophy of therapists I’ve known who don’t believe in diagnosing mental illness but put a name on their patients’ struggles anyway because many insurance policies only pay for therapy if the treatment is for a diagnosis listed in the DSM. That’s the main point that I wanted to make, but there’s still a lot to say on this topic.

If almost everything is being called “ABA” then what is actual ABA? And why do Autistic adults say it is abusive? What sort of warning signs should parents be watching for? What is harmful about certain practices? Those are a lot of questions to answer, but I will do my best. Bear in mind that I’m not a therapist — ABA or otherwise — and I’m not a parent. I’m one Autistic adult, one person coping with therapy-induced PTSD, one person exhausted by the all-out war I see every day between people like me and people who love people like me, one person who wants to see a better world for everyone (but, I admit, especially for Autistic people.)

ABA was developed by Dr. Ivar Lovaas. As a 1965 Life Magazine article explains, the core theory of ABA was that a therapist, “forcing a change in a child’s outward behavior” would, “effect an inward psychological change.” The article says, “Lovaas feels that by I) holding any mentally crippled child accountable for his behavior and 2) forcing him to act normal, he can push the child toward normality.”

Much has changed, but this core premise of Lovaas’ work remains solid. ABA’s core belief is that forty hours per week of therapy geared toward making a child externally appear as “normal” as possible will “fix the brokenness” inside that made the child behave that way. ABA believes in an extreme form of “fake it until you make it,” and because it is behaviorism at its most pure — that is, a psychological science that treats internal processes as irrelevant to function (Lovaas said, “you have to put out the fire first before you worry how it started”) — it treats behavior as meaningless and unwanted actions rather than as communication.

This approach is troubling for many reasons.

ABA strongly emphasizes the importance of intensive, saturated therapy and insists that it is crucial to get 40 hours a week of therapy for very young children. Think for a moment how exhausted you, a grown adult, are after 40 hours of work in a week and you will begin to understand why we get so concerned about putting a three-year-old child through such a grueling schedule. Being Autistic doesn’t give a three-year-old child superpowers of endurance. Forty hours a week of ABA is not just expensive, it is painfully exhausting. ABA maintains a schedule like this with the intention of breaking down a child’s resistance and will.

I understand that you are afraid for your child. Their future is unknown. You are worried about their ability to live a fulfilled life. You are worried about their ability to have self-supporting work and be taken care of after you pass on. And I understand that this fear, coupled with a deep desire to give your child the best you can give them, can lead you to accept the ABA attitude of “more is better.” But stop a moment and think about the capacity for sustained focus of the average three-year-old and consider what a therapy that tries to double (or more) that capacity is doing to a child. If you stress a child out or even traumatize them with extreme therapies, you are paradoxically increasing the chances of incapacitating PTSD in the child’s future. Yes, you want your child to develop as much as they are able to develop and you want them to enjoy their life and hopefully provide for themselves, but exhaustion and trauma are not going to aid those sorts of development.

Worse than the exhaustion of so many hours of therapy, though, is the heavy focus on making a child “indistinguishable from his peers.” The main goal of ABA is to make a child LOOK normal. This is insidious for a few reasons. first, it is the best way to get the parents to continue to co-operate with the therapists for many years. Of course you are going to be moved to tears if the therapist gets your child to look you in the eye or say “Mommy” to you or sit at the table and eat a meal without fidgeting or melting down. Of course you will feel like the therapist is making progress and healing your child. That is a very natural response. So you will see the progress and you will want to continue with ABA therapy and you will be very defensive when adults Autistics online suggest that what is happening in your home might be a bad thing. What was bad were fights every mealtime. What was bad was never hearing your child’s voice. What was bad were the judgmental or pitying stares you and your child got when you went out in public and people saw your child spinning around or flapping her hands or becoming so anxious you were forced to leave your groceries unpurchased and flee the store.

But if your child is getting classic ABA therapy, what you are seeing is an illusion. And what looks like progress is happening at the expense of the child’s sense of self, comfort, feelings of safety, ability to love who they are, stress levels, and more. The outward appearance is of improvement, but with classic ABA therapy, that outward improvement is married to a dramatic increase in internal anxiety and suffering.

ABA therapists are trained to find out what your child loves the most and hold it ransom. Often, it’s food. If your therapist suggests withholding food as a form of behavioral therapy, run screaming. That is harmful. If your child’s therapist will not allow you to remain in the room during a session (they will usually tell you that your presence will be a distraction that will keep your child focused on you instead of on the therapy they need to be paying attention to) that is a big warning sign. If you are able to witness your child’s therapy sessions and your child is spending a lot of time crying or going limp or flopping on the floor or showing signs you recognize as indicators of anxiety or fear, beware the therapy. If the therapist insists on pushing forward with the therapy when your child is crying or going limp instead of giving your child recovery time, run screaming. Therapy that trades your child’s sense of safety in the present for a promise of future progress is exactly the sort of thing that Autistic adults mean when they talk about abusive therapy.

Therapy should make your child better, not traumatize them, possibly for many years, potentially for the rest of their life. A therapist might tell you that “a little crying” is a normal thing, but I was once an Autistic child and I can tell you that being pushed repeatedly to the point of tears with zero sense of personal power and knowing that the only way to get the repeated torment to end was to comply with everything that was asked of me, no matter how painful, no matter how uneasy it made me feel, no matter how unreasonable the request seemed, knowing that I had no way out of a repeat of the torment again and again for what felt like it would be the rest of my life was traumatizing to such a degree that I still carry emotional scars decades later. It doesn’t matter whether the perpetrator is a therapist, a teacher, a parent, or an age-peer: bullying is bullying.

In my opinion, the goal of therapy should be to help the child live a better, happier, more functional life. Taking away things like hand flapping or spinning is not done to help the child. It is done because the people around the child are uncomfortable with or embarrassed by those behaviors. But those are coping behaviors for the child. It is very important to question why a child engages in the behaviors they do. It is very wrong to seek to train away those behaviors without understanding that they are the child’s means of self-regulation. When considering whether you have made a wise choice in what therapy you are providing your child or not, you want to always remember a few cardinal rules: behavior is communication and/or a means of self-regulation. Communication is more important than speech. Human connection is more important than forced eye contact. Trust is easy to shatter and painfully difficult to re-build. It is more important for a child to be comfortable and functional than to “look normal.”

Work on things like anxiety and sensory issues first. Work on getting better sleep (both you and your child). Things like eye contact can come later, much later, and only if your child is comfortable with them. There are work-arounds. Lots of people fake eye contact. Lots of people have good lives with minimal or no eye contact. But forcing a child to do something that is deeply painful and distressing for no reason other than to make them look more normal is not just unnecessary, it is cruel.

I live two blocks from a behavioral clinic and I frequently walk several blocks out of my way to avoid walking past it because of the kinds of things I have seen when walking past the clinic. Let me tell you about the last thing I saw there, the thing that made me decide that I would rather walk an extra half-mile than risk seeing more ABA therapy on the sidewalk in front of the clinic.

A mother and father came out of the clinic with a little girl, around 7 years old by my best guess. Mother said, “Janie (not the actual name), look at me.” Janie didn’t look at her mother. The mother said to the father, “you know what to do,” and the father took hold of Janie and turned her head toward mother, saying, “look at your mother, Janie.” Janie resisted, turning her head away and trying to pull out of her father’s hands.

Mother crouched down and Father lifted Janie’s whole body up, laying her across Mother’s knee, face up. “Look at your mother, Janie,” father said. “Look at me, Janie,” Mother said. Janie began to whimper. Her body was as stiff as a board. Father held her body firm and Mother took hold of Janie’s head, “look at me, Janie,” Mother said.

I was glued to the sidewalk. I didn’t want to see any more but I couldn’t look away, couldn’t walk away. Janie began to moan and thrash her body. Father’s hands held her body steady as she kicked and flailed. Mother’s hands held Janie’s head steady. Both kept urging Janie to look at her mother. Janie’s moans turned to screams but neither parent let her go.

Finally, Janie’s entire body went limp with defeat. She apparently made eye contact because Mother and Father began to lavish praise on her. “Good girl, Janie. Good eye contact. Good girl. Let’s get some ice cream now.” Janie’s limp body slid to the sidewalk where she lay, sobbing. Father picked her up and carried her to the car, the whole way praising her submission. “Good eye contact, Janie.”
a drawing of eyes looking away with the caption forced eye contact hinders human contact
(This image – a drawing of eyes looking away with the caption
“Forced eye contact hinders human contact” – is a sticker and is also
available as a light t-shirt or dark t-shirt in adult and children’s sizes.)



What did Janie learn that day? I’ll give you a hint: it was not that people are more trusting of those who make good eye contact. It was not that she will appear more normal and thus fit into society better if she makes good eye contact. It wasn’t even that Mom really loves it when Janie connects with her through the eyes like that.

Janie learned that adults can have whatever they want from her, even if it hurts and even if they have to hurt her to get it. Janie learned that her body does not belong to her and that she has to give others access to it at any time, for any reason, even if she wasn’t doing anything that could hurt herself or others. Janie learned that there is no point in resisting and that it is her job to let others do what they want with her body, no matter how uncomfortable it makes her.

You may think I’m exaggerating or making this out to be more extreme than it is, but stop for a moment and imagine years of this therapy. Forty hours a week of being told to touch her nose and make eye contact and have quiet hands and sit still. A hundred and sixty hours a month of being restrained and punished when she doesn’t want to touch her nose and being given candy and praise when she does touch her nose for the 90,000th time. Nearly two thousand hours a year of being explicitly taught that she does not own her body and she does not have the right to move it in ways that feel comfortable and safe to her. How many years will she be in therapy? How many years will she be taught to be a good girl? To touch her nose on command? To make eye contact on demand? Graduating to hugs, she will be taught that she is required to hug any adult who wants a hug from her. She will be punished when she does not hug and praised and fed when she does.

And who will protect her from the predator who wants to hug her? Who will teach her that she is only required to yield her bodily autonomy for her parents and therapists but not for strangers? What if the predator turns out to be one of her therapists or parents? How will she resist abuse when she has had so many hours of training in submission? Therapy is an investment in the future, but ABA therapy is creating a future for Janie of being the world’s doormat. Is that the future Janie’s parents want for her?

If your child’s therapist believes it is more important for your child to comply with every command than to have any control at all over his or her body, run screaming. And don’t forget that a layer of training does not change the underlying neurology. ABA uses the same methods and theories as dog training and if I train my dog to shake hands, it doesn’t make him more human. It just makes him a dog who can shake hands. Similarly, if you train an Autistic to make eye contact and not flap their hands and say “I love you, too” and stay on task, it just makes them into an Autistic who can fake being not-autistic with some relative measure of success. Underneath the performance is still an Autistic brain and an Autistic nervous system and it is very important to remember that. Being trained to hide any reaction to painful noises, smells, lights, and feelings doesn’t make the pain go away. Imagine years of living with pain that you have been trained to hide. How long would it last before you broke down? Some Autistics last an amazingly long time before they break down and burn out.

And intensive ABA therapy will also teach a child that there is something fundamentally wrong and unacceptable about who they are. Not only is that child trained to look normal, they are trained to hate who they are inside. They are trained to hate who they are and hide who they are. They will work very hard to hide who they are, because they have learned to hate who they are. And as a result, they will push themselves to the brink of destruction. And when they finally crumble from years of hiding their sensory pain and years of performing their social scripts and blaming themselves every time a script doesn’t carry them successfully through a social situation, they will be angry at themselves and blame themselves for their nervous breakdown and autistic burn-out.

All those years of ABA therapy will have taught them that they are fundamentally wrong and broken; that they are required to do everything authority demands of them (whether it’s right or wrong for them); that they are always the one at fault when anything social goes wrong; that they get love, praise, and their basic survival needs met so long as they can hide any trace of autism from others; that what they want doesn’t matter.

Now you know what to watch for. Your child’s therapist may use the term “ABA” in order to get paid, but they might not be doing these harmful, degrading, abusive things to your child at all. If your child’s therapist is respecting your child, not trying to break down the child’s sense of self and body-ownership, treating behavior as communication rather than pointless motions that need to be trained away, valuing speech but not at the expense of communication, giving your child breaks to recover and not over-taxing their limited focusing abilities . . . then they can call their therapy anything they want to, but it is not ABA. (And hold on to that therapist! They are golden!)
And I hope that the next time you hear an Autistic adult say that ABA is abuse, you are compassionate. Remember the suffering so many of us endured. Know that we say those things because we love your children and want to help them. We do not say them because we hate you and want to call you abusers. We don’t hate you at all and we want to help you. Sometimes we are clumsy in how we go about it, because, well, we are Autistic and communication difficulties are part of that package. But know that when we attack ABA, we are not intending to attack you. We want your child to sleep through the night and laugh with joy and become toilet trained (on whatever schedule their bodies can handle — don’t forget that we tend to be late bloomers), and have a healthy, happy, productive, love-filled life.

We want you to rejoice in parenting and connect with your children on a deep and meaningful level. When an Autistic adult says “ABA is abuse,” you might be tempted to hear, “you are abusing your child.” But that is not what we are saying. Next time you hear an Autistic adult say “ABA is abuse,” please hear those words as, “I love you and your child. Be careful! There are unscrupulous people out there who will try to convert the fear you feel for your child’s future into money in their pocket at the cost of your child’s well-being.”

And if you are a therapist and you are upset when we say “ABA is abuse”, know that we are not talking about you . . . unless you are using shock punishments or making children endure long hours of arduous therapy beyond their ability to cope or teaching children that they do not have the right to say who can have access to intimacy with their body or not (and forced eye contact is a particularly nasty violation of a person’s control over their bodily intimacy.) If you are not the kind of therapist who we are talking about when we talk about the harm of therapy, then we are not talking about you! Thank you for being one of the good guys. We need more like you. Teach others what you know. Spread the love and help change the world, please!

Thank you for reading all of this. I know it was a lot of words, but this is such an important topic. The children are the future and I don’t have words to explain how painful it is when I see Autistic adults being verbally bullied and abused because they are trying to help the children by helping parents to understand more about the lived experience of autism and more about the kinds of things that can be very harmful to Autistic lives. I had over a decade of therapy in my childhood and much of it was not good therapy and I am explicitly damaged because of it. When I say ABA is abuse — when we Autistic adults say ABA is abuse — we are speaking from a collective wisdom gained through painful experiences that have left lasting scars on us. We don’t want anyone else to have to go through the pain we have gone through. Please respect where we are coming from and please do not add to the trauma by attacking us for trying to help others. Thank you.

=========
Edited to add: if you would like to see some video examples of helpful vs. harmful therapies, check out this blog post I made a month later on that topic:
Helpful vs. Harmful Therapies: What Do They Look Like?

Monday, October 13, 2014

ZOOM Autism Magazine!

Dear Readers,

Today I am delighted to be able to share with you the launch of a new magazine that I believe will change the face of autism magazines.

Zoom Autism Magazine Fall 2014 comes out today, featuring articles from M. Kelter, Cynthia Kim and Jess Wilson among other fine voices. The editors have so far more than lived up to the magazine's promising subtitle of "autism through many lenses" by creating a beautifully produced document inclusive of a kaleidoscopic range of perspectives. This is a magnificent accomplishment.

I have never met the excellent editors Sharon Fuentes, Sharon Cummings, and Jodi Murphy, nor have I met many of the voices in the inaugural issue of Zoom, but I want to: to me, all of this says that Zoom is poised to be a forum wherein community can truly come together for fellowship and education.

And here it is: the link to Zoom Autism Magazine!

Love,
Ib

Wednesday, May 14, 2014

You Are Not Alone

Dear Readers,

This summer I will be able to get back to regularly scheduled blogging.

Meanwhile, I have been able only to answer emergency private messages. 

Something struck me about a majority of my answers in these things, and I wanted to say something about it here, because I can write it quickly and give it to the world, even if I am having various difficulties at the moment.  It is this: one of the most important things I can ever say to anyone is that you are not alone, and finding community changed my life.

I want to give you these resources for parents, and also disabled people (largely Autistic, in the case of these resources, because of the audience for this blog) because in them you can find a wealth of like-minded parents and also other Autistic and other disabled adults who are the kind of people who want to reach out to parents in fellowship and share experience, strength and hope.

First, PACLA, which stands for Parenting Autistic Children with Love and Acceptance. This is a Facebook Community group in which you can put up a question and specify if you want it to be answered by only Autistic people for an insider experiential view, or the community at large for the kind of interactional experience or systems understanding or group support that knowing people who have the same things in their lives can bring. From what I see of the people who write to me, most people would love this group and I always send people there privately.

Here, to see what PACLA stands for, is a link to the inaugural magazine they put out: PACLA Magazine, First Issue. I love this magazine. The editors are parents of Autistic kids and Autistic themselves! It is an honor to be part of it. The word 'magazine' doesn't even come anywhere near doing justice to the awesome, and these two claim it is their first time. The only reason I believe them is because I believe them, not because of the evidence. :)

Like what you see? Here is a link to the Facebook Group for PACLA RIGHT HERE. One of the people who started it, Alyssa Hillary, is a fabulous young Autistic activist scholar, a good friend of mine in person. Many parents and autistics are involved, too, in addition to the ones who started it, and the movement is growing.

Next, look at the archives of this blogging collective in which I sometimes participate, and so do many others. It is called We Are Like Your Child and can be found online HERE.. The point of this blog is that we talk about difficult issues within, and how we create workarounds for these things, to make things doable notwithstanding. The disabled people who write here are all people who, like me, care about Autistic and other disabled children and their whole families. All of us are reaching out for a better world. This is another place to find people who will make you notice you are never really alone. They are part of my personal lifeline. May they (we) be the same for you and yours.

Thanks so much for your patience and I will see you in June!

Love,
Ib

Wednesday, April 2, 2014

Today Is World Autism Awareness Day

Today is World Autism Awareness Day.

A couple of days before this day, I was at University of Michigan, giving a talk called Autistic Activism in an Age of the Blues.

If you click on the name of the talk, above, you can see my description of it that the Department of English Language and Literature put forth for people to use in order to decide if they wanted to come.  The basic idea was to explain the background, or rhetorical genealogy, of lighting it up blue, starting with the onset of puzzle piece as a shorthand way to represent our people.

None of it has much to do with our actual people, or anything real about us. 

The turnout was first of all so many people I was surprised! And second of all--this part is not so surprising because I am getting used to paying more attention to real life than to media representation--full of lovely people. To hear the ad campaigns and the news and the researchers that get funded by the right kind of corporations tell it, everyone thinks I'm a tragic burden from fearsville, pityland.

In real life, I go around in the world keeping meeting a diffuse divergent kaleidoscopic spectrum of the wide world of wonderful.

Rock on, real life.  Especially Michiganders.

One of the many Rockin' People is the emerging technologies librarian Patricia F. Anderson of University of Michigan, and I'm mentioning her in particular (hi there :) ) because she made this wonderful thing, a Storify, where you can read the things I was saying at the talk that she and others picked up and Live Tweeted by writing them quickly on Twitter right when I said them. Multi-tasking Heroics! AND THEN! She put links to the real things we were talking about, like Tone It Down Taupe, so you can easily look it up.

Also when you are on there on her Storify page you can see other talks she went to and did this. It is fun.

Here's that link now, in case you want to see more details about what we talked about: The Awesome Storify Narration of the Michigan Talk.

So the lovely people and I talked about all sorts of things, like neuroqueering, and being a mother, and our own families, and school, and subversive ways Autistics deal with stigma, and how all the ways of being neurodivergent are not that different from one another...and so much more.

Take that, Stigma Awareness. I'll be aware of Acceptance, Appreciation and Awesomeness instead.

Love,
Ib

Tuesday, April 1, 2014

Candlelight Vigil Tonight

Today is a day of remembrance, a Candlelight Vigil for Autistic Children Who Lost Their Lives After Wandering. If you click on the link, you can join us in the virtual vigil group on Facebook. Please do.

We come together today to mourn those who are gone from us. They cannot be brought back, but they will never be forgotten.

While the issue is complex, I know it is something many more fear, whose loved ones are not gone, but might become gone; and if this is you, or someone else you know, I invite you to consider reading a post I wrote on the topic last June. It may have no application, or it might.

My heart goes out to the families and friends of those we have lost.

[Pic of a candle in cupped hands, in the dark. Words: Loss leaves a heartache no one can heal; love leaves a memory no one can steal.]
Love,
Ib

Wednesday, March 19, 2014

What is Autism?

What is Autism?

Click here for a short, reliable, definitive description.

Nick Walker wrote that, and I'll be glad forever.

Thanks, Nick Walker!

And thanks to all of you who click on it!

Love,
Ib

Tuesday, March 11, 2014

Stop Combating Me

Congress is getting ready to reauthorize the Combating Autism Act, and I hope they don't. I'd rather have them write a real thing that does what people meant for this one to do when they accidentally voted it in, back in 2005.

I'm tired of politicians and fake charities tricking everyone.

This act says it helps us and our families.

But if you ask my mother, she will not say preventing me from being born would have helped her. My father is glad I was born, too. I think my brother and sister are also pretty happy about this thing of me existing instead of being never-born. Don't get my wife started on this topic, unless you want to find out what an irate Scot looks like.

However, the vast majority of research money for "Combating Autism" under this act is ear-marked for prevention of us. Preventing families doesn't really help families, when you think about it.

If I had not been born, my children would not have been born.

Autistic Self Advocacy Network reports:
Of the $217 million NIH spends on autism research, only 1.5% goes towards the needs of adults and 2.4% towards improving services. We can do better. Will you help by signing our petition telling Congress to reform CAA and to stop combating people on the autism spectrum and families? You can find it HERE. (Please click and sign!)
Some people think "Combating Autism" is the wrong name for this act, because they say it is helping us instead of fighting us. But I think it is being pretty honest about what it is.

It is fighting against us instead of trying to help us.  I can respect the honesty. But I would prefer respect and real help for real people. I prefer being treated as a real person.

Please, readers, will you sign the petition and ask them to stop combating me and people like me?

Love,
Ib

Thursday, March 6, 2014

I Am A Mother (Part 2)

Checking in... the ABA project was a giant undertaking for someone who has such a hard time writing! Thank you so much for your patience!!

Here is a thought that came to me today, this morning, as I stepped on a Cheerio, and laughed.

[Image: Cheerios strewn over a hardwood floor. Not unlike what you might find in our kitchen on any given morning! Oh who am I kidding. I don't know what time of day it is, and neither do the ever-present Cheerios.]
I laughed. And then I thought: whoa. This is me laughing about Food Being Where It Does Not Go.

Before the boys were born, I "knew for a fact" this was not going to be able to happen.

Cheerios and crumbs underfoot, under my feet, going crunch, ack? It means I have a house full of cutefellas. I shrug and laugh. This is something I could never have dreamed possible.

Also it's something I think a lot of people will understand.

I am a mother.

Love,
Ib

Monday, March 3, 2014

Accidental Bully: I don't want to be that person

There is a person out there whose experience was me bullying him, but it seems like he more feels like my non-autistic friends should have been stopping me and has never come to me about it. I wish he would, because I want to tell him I am sorry for hurting him.

Let me tell you, at the time I felt like I was passionately defending my friend. I felt like this guy was being mean to her. I felt right about my self. But read further for what I have learned about this.

And here's another thing. I am not trying to tone police other people. This is all kinds of wrong.

But right now I am talking about my own self.

Intention is not magic. It does not matter if I think I was right in my opinions. What matters to me is that I hurt somebody. I got so passionate that I forgot to be COMpassionate.

Some people might know this guy I'm talking about, but not know that the bully he talks about is Autistic. It is. It's me. Please show him this, show him I'm sorry I hurt him, and the reason I haven't told him myself is because I don't know how to contact aliases. I'm not very computer savvy.

But I totally get it now that me feeling right about what I am saying does NOT give me the right to go around hurting other people. It does not.

So some moms asked me to join this flash blog against cyber bullying. And it broke my heart, because really? People's moms cyber bullying each other? What is this world coming to?

And then I remembered I accidentally bullied someone once.

Aspie Kid, I'm sorry I hurt you. I one hundred percent did not mean to, but I get that what I meant is not the same thing as what actually happened to you. This is important.

Everyone else in the world, please join me in deciding once and for all not to be that person.

 [Image description: Logo for FlashBlog, which says Don't Ignore Cyber Bullying, Mon. March 3rd 2014. It's a claymation looking guy trying to step through one of those red negation signs as in No Smoking or so forth, and he might succeed, as the slash on it is covering his chest like a sash, and he has momentum, and one of his feet is through the red circle already along with both his hands and the top of his head.]

Wednesday, February 19, 2014

On Being Human

Like many commuters, I listen to the radio a lot. Something hit me about the way they introduce new songs. The disc jockeys talk about the fact that a new song is coming up, and if we know the artist, they'll mention another song by this artist to jog our memories. If it's an artist they think we may never have heard of, they might say something by way of introduction, something to locate the new music somewhere in our minds, prepare us in a positive way.

Most of the songs on the radio are in heavy rotation, and they phase them in and out like this, with an occasional familiar oldie. These people know what they are doing. Why would they bother doing all this?

And I thought of this thing that happened right around the time in the middle of the eighties when I was getting myself kicked in and out of high school. It was an enormously big deal, and folks my age will remember, and I'll tell you what happened in case you are younger.

Coca-Cola tried to change its flavor to become "new and improved" and this was treated like a National Disaster. I am serious, people were really flipping out about this, and it was all over the news, for some time. It was a major topic of conversation. There was high emotion. Even Bill Cosby was somehow involved, but I don't remember his exact role, just that it was A Thing, because of his standing in the community.

At this time in my life, I believed I was not a human being, not the same thing as a person. But I was just now having this reverie about how everyone else reacts to change...

And here is another thing: people often see the sensory accommodations in my office and ask if I can help them brainstorm getting the whole workplace to be more like my office.  

People often read my writing on things like rushing and social and emotional confusion or distress and say they can really relate to it even though they are not autistic.

People often hear ideas of what can help kids like me handle executive functioning difficulties in the classroom, and declare, "I am going to try that for myself!"

Instead of not being human, what if I am very human, so outrageously human that it sometimes rises to the level of impairment? What if it is really that the things I cannot function without are things that would make everyone function better? My sine qua non might be every one else's sine qua shouldn't have to.

Love, 
Ib


Thursday, February 13, 2014

Love, Not Fear

This is my entry for the Love Not Fear Flashblog. In case you are clicking from TGN directly, here is a link to the flashblog site itself, where you can read lots of others, and get yourself very happy: HERE IS THAT LINK. What I love about this is that it's organized by a loving group of people, some of whose kids are Autistic; and some of the people are Autistic themselves, and some are not, and some of them have no kids. Just a bunch of love bringing us together.
[Image: Flashblog logo of a pink and white heart made out of lacy smaller hearts with #PosAutive in it. It says, Flashblog: Love Not Fear, presented by Boycott Autism Speaks, and cites a deadline, for which I am late, of course.]
Lately I have been having a lot of trouble writing, so I will tell a story of Love winning out over Fear, in pictures.

One day a bit ago, we were having an action where we were supposed to take a picture of ourselves with a sign saying something like "I am not afraid to say I am Autistic." This was because something was making the fearmongers smear our name again, as usual, nothing really different. And I support these actions, but I have this thing of being rather precise. So, I couldn't lie. I do say it freely: I am Autistic; however, I don't say it without trepidation, especially when one of these media scarymovie frenzies is going on. This is the picture I made:
[Here is a webcam picture of me sitting on the bed, holding a hand-lettered sign. The sign says: I AM AUTISTIC AND TIRED OF FEAR.]
The boys were napping and Layenie came in and sat next to me on the bed, having finished what she had been doing really quick. She saw this thing I made and gave me a big, much-needed hug. Then she looked at her Facebook and saw a call for participation in another action that our people who love us were taking in support, having to do with This Is Autism. Layenie immediately made this:
[Layenie's pic here is of me with the twin boys, age about one, in the transition from baby to toddler. She has inscribed the picture with these words: "This is Ibby. Ibby is a professor, a mother extraordinaire, and a wonderful spouse. She is light, laughter, and love. She is books, trains, twirly things, and cracking up about the word underwear. This is autism, and oh boy, am I glad."]
This made my eyes leak. It also made my eyes leak to look at it again just now, and remember, and do the image description.

In a cage match between love and fear, love wins.

Love wins.

Fear can come back as much as it wants. For me, in my experience of my self, I know it will.

But I also know love wins.

[This is a meme that says "Caring and respect are better than pity and fear. People are better than Autism Speaks."]
Love is better than anything.

Love,
Ib


Tuesday, February 11, 2014

On What A Bad Idea Rushing Is...

I am still working on the stuff about ABA, which takes forever, and it is taking even longer than I meant for it to take, because I am trying to rush myself.

Which reminded me, I forgot to link to this article I wrote for We Are Like Your Child, about what a bad idea rushing is.

Here's the link: Please Don't Rush Me, on We Are Like Your Child.

Thanks for hanging in there with me, and much love to you all. Nobody other than my own self is trying to rush me in this instance: You all win! xx

Love,
Ib

Monday, January 27, 2014

True Answers About ABA (Part 1)


Hi Ibby! 

I am a Parent to a 3 year old Autistic girl. She is receiving OT, Speech, Music therapy and ABA. I have felt it was the ABA where the progress we've seen has been made. However, as someone who is a staunch advocate for my daughter and her Autistic peers, I want to always be doing what is best and least stressful for her.

I have seen quite a bit of controversy in the Autism community by receivers of ABA, that express having PTSD from the experience and are now staunch opponents of ABA. But what they describe going through and what many of our kids do, seem vastly different. Is there any way to clarify this issue, about just what ABA is and isn't and how, in layman's terms a Parent can avoid and identify it?


This is a topic that causes a great deal of angst, distrust and Parents feeling they are being labeled as abusers if they are using ABA...which I guess, may really not be? Any help at resolving this would be great!

Thank you!

Sandy



Dear Sandy,

Thank you so much for asking.

This question is so very important, and as you say, the things people say and do about it can be very confusing, and from where I stand, I have been able to collect more than the usual amount of information about why they have to do and say the confusing things that conflict with each other, and was wondering if I would be able to help.

I hope I can help.

I will try to keep this a little bit shorter than a big giant book by linking to other related things I wrote before, and breaking it down into parts so you can look at the pieces of the question you are interested in at any given time.

Here are the topics I will touch on:

Why are so many Autistic people who have been through ABA against it, and/or experiencing PTSD?

In that case, why would anyone defend it? What is going on there?

What do you mean by the notion that a type of treatment can be morally wrong?

But I have seen it work well, and you just gave what looked to me a whole lot like an example. Can you explain what is going on here, when it works well?

Why would that still be called ABA then? Why don’t they call it something totally else?

Can you see a solution to this thorny issue? What would it be like?

Meanwhile, before that solution happens, what are practical actions I, as a parent, can take in real life? I want to do what is right for my kids, and I also want to be a good person in the world.

I’m writing back now because I have had your letter for a longish time, I think, and I wanted you to know this is what I’m working on, and I think it’s really important, and I want to get it right. Please write back if my outline above doesn’t hit on all cylinders, but so far I have answers in my head for all the things above that I just need to translate into readable words, so that’s what I’m going for.

Love,
Ib