reparative therapy

 

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{image is a button that my friend, Chris designed. It features a rainbow ribbon and the words, “Autistic Pride,” also in rainbow. Click on the image to buy one or see her other designs.}

One of the ‘core symptoms of autism’ that is mentioned in the article and that many drugs seek to address is repetitive behavior. I have to wonder, for whom are we addressing repetitive behavior? Is it really harmful to autistics? Is finger flicking or rocking or otherwise stimming really an impediment to a successful life? Or are they really problems more for US – the NTs who become uneasy because we have no idea how to react to someone who doesn’t fit the mold of what makes US comfortable? And most importantly from my perspective, what happens to the impulse to stim when we quell the behavior that it results in? Does it disappear? Blow off into the wind? Break down into waste and find its way out of the body?

Stimming serves a purpose. All behavior does. Ask someone autistic. I have. And the answers I’ve gotten are “Calming. Soothing. Shutting out an overwhelming world. Focusing. Freeing. Comforting. “

So take away the vehicle for all of that – for calming, soothing, shutting out an overwhelming world, focusing, freeing, comforting – and what do you leave in its place? Without the behavior that served those purposes, how does a person who might very well live in a constant state of high alert, who is unable to filter the constant sensory barrage of this life, for whom there is no natural hierarchy of input, supposed to compensate for all of that overwhelm? What tools do you leave them in return for the one that you’ve taken away? Or do you simply take it away because it’s not normal and not normal is harmful?

I wrote the above and put it into my Drafts file the day that I first read the article. And then I walked away. It was too big to process in one sitting. I needed to sit with it awhile, to chew on it and to think through its huge and frankly, kinda scary implications. I had to reach a point where I was ready to say out loud, Yes, there was a time, early on, before I knew anything different, that all I wanted was for my kid to look normal. Because looking normal meant acting normal which meant being accepted by society which meant an easier life. Right? Isn’t that the formula? Isn’t that how it works? Change behavior, change a life. Right?

And then I had to figure out how to say No, that’s not it. This isn’t math; it’s life and life is messy and sticky and doesn’t lend itself to nice, neat equations and pretty little formulas. That suppressing who we are without a valid and comfortable and AUTHENTIC means to express what we NEED to express can be far more dangerous than not fitting in. That being taught to pass for something that you’re not and succeeding at it may mean success on the outside but what the hell does it mean for the inside? That being taught that what you are is not okay and that you therefore need to pass as something else can be deadly. That self-esteem and confidence and self-love and the deepest of personal truths are what are on the line. That I’m not being overly dramatic in taking it there. That I know that because I’ve read so many blog posts and had so many conversations with autistic adults who teetered on the edges at various points in their lives – who literally contemplated suicide, or tried, because the message that they got – whether it was the one that was intended to be delivered or not – was that who they are was not okay.

End Game, October, 2012

Yesterday, Buzzfeed reported that nine former ex-gay leaders (I’ll give you a minute … former + ex = back where they started) signed onto an open letter in support of the movement to ban gay conversion therapy. That letter reads as follows.

Conversion therapy, also known as “reparative therapy”, “ex-gay therapy,” or “sexual orientation change efforts” (SOCE), professes to help lesbian, gay, bisexual, and transgender people to change or overcome their sexual orientation or gender identity. The majority of those who practice this “therapy” often do so with little or no formal psychological training, operating instead from a strict religious perspective, believing homosexuality to be a “sin.”

At one time, we were not only deeply involved in these “ex-gay” programs, we were the founders, the leaders, and the promoters. Together we represent more than half a century of experience, so few people are more knowledgeable about the ineffectiveness and harm of conversion therapy. We know first-hand the terrible emotional and spiritual damage it can cause, especially for LGBT youth.

We once believed that there was something morally wrong and psychologically “broken” about being LGBT. We know better now. We once believed that sexual orientation or gender identity were somehow chosen or could be changed. We know better now. We once thought it was impossible to embrace our sexual orientation or sexual identity as an intrinsic, healthy part of who we are and who we were created to be. We know better now.

Looking back, we were just believing (and sometimes teaching) what we had been taught— that our identity needed mending. We grew up being told that being LGBT was disordered, sick, mentally ill, sinful, and displeasing to God. We grew up being told that loving, same-sex relationships were shallow, lust-driven, deceived, disordered, and impossible.

We grew up with the repetitive message that LGBT people were not enough — not straight enough, not Christian enough, not manly or womanly enough, not faithful enough, not praying enough. Never, ever enough. “Toxic” probably sums it up best. That message is poison to the soul. Especially a child’s soul.

It can take a lifetime to get rid of that old programming and replace it with healthy, non-toxic views of yourself. Recovery from conversion therapy is difficult at best. Some remain forever scarred, emotionally and spiritually. Conversion therapy reinforces internalized homophobia, anxiety, guilt and depression. It leads to self-loathing and emotional and psychological harm when change doesn’t happen. Regrettably, too many will choose suicide as a result of their sense of failure.

In light of this, we now stand united in our conviction that conversion therapy is not “therapy,” but is instead both ineffective and harmful. We align ourselves with every major mainstream professional medical and mental health organization in denouncing attempts to change sexual orientation or gender identity. We admonish parents to love and accept your LGBT children as they are. We beseech the church to accept, embrace, and affirm LGBT persons with full equality and inclusion.

As former “ex-gay” leaders, having witnessed the incredible harm done to those who attempted to change their sexual orientation or gender identity, we join together in calling for a ban on conversion therapy. It is our firm belief that it is much more productive to support, counsel, and mentor LGBT individuals to embrace who they are in order to live happy, well- adjusted lives. We fully support the aim of #BornPerfect to bring an end to conversion therapy.

Brad Allen
Lay Leader Volunteer (2005–2007)
Church Network Coordinator (2007)
Exodus International Headquarters

Darlene Bogle
Founder, Director, Counselor (1985–1992)
Paraklete Ministries

Michael Bussee
EXIT (1974–1979)
Co-founder (1976–1979)
Exodus International

Catherine Chapman
Project Coordinator (2000–2003)
Women’s Ministry Director (2005–2007)
Portland Fellowship

Jeremy Marks
Founder (1988–2000)
Courage UK
Exodus Europe (1988–1989)

Bill Prickett
Founder, Executive Director (1986–1988)
Coming Back

Tim Rymel
Outreach Director (1991–1996)
Love in Action

Yvette Cantu Schneider
Executive Director (2001–2005)
Living in Victory Ministry
Director of Women’s Ministry (2008–2011)
Exodus International

John J Smid
Executive Director (1987–2008)
Love in Action
Exodus International Board of Directors (1990–1995; 2002–2008)

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No, it’s not a perfect parallel.

Homosexuality is not a disability (though societal bigotry certainly acts as a handicap to LBGT people.)

Autism is.

But it is also an identity.

Part of who a human being is.

A big part.

Don’t think the parallel works?

How about if we replace a couple of words?

We once believed that there was something wrong and psychologically “broken” about being Autistic. We know better now.

We once believed that Autistics could be cured by behavioral therapy. We know better now.

We once thought it was impossible to embrace our Autistic identity as an intrinsic, healthy part of who we are and who we were created to be. We know better now.

Looking back, we were just believing (and sometimes teaching) what we had been taught— that our identity needed mending. We grew up being told that being Autistic was disordered, sick, mentally ill, and displeasing to God. We grew up being told that leading productive, satisfying, fulfilling lives as Autistics was impossible.

We grew up with the repetitive message that Autistic people were not enough — not NT enough, not social enough, not aware enough, not capable enough, not human enough. Never, ever enough. “Toxic” probably sums it up best. That message is poison to the soul. Especially a child’s soul.

It can take a lifetime to get rid of that old programming and replace it with healthy, non-toxic views of yourself.

How about now?

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In June of 2011, my friend, Landon Bryce wrote the following on his blog, Thautcast. It was part of a post entitled, Did ABA’s Founder help kill this man?

People are still claiming that homosexuality can be cured because of this 1974 paper Rekers authored with Ivar Lovaas, documenting his work with Kirk Murphy.  Except that Murphy came out as gay in 1985, and killed himself in 2003.

Watch this CNN report called “The Sissy Boy Experiment” describing the therapy Murphy got to cure him of effeminacy when he was a child.  Remember that the man who helped conceive it is the man who helped conceive what is considered “the gold standard” of autism treatment.

The same guy who claimed he cured kids of autism using ABA also claimed to cure a kid of being gay using some of the same techniques.

And that kid grew up both to be gay and kill himself.

Think about that real hard.

How about now?

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In October of 2012, my dear friend, Linda, all-around beautiful human being and mom to an autistic son, wrote a post called Autism, Passing, and What it Costs Us All. The following is an excerpt from that post.

 

So, twice a week that is what we did. In excruciating detail we discussed the “right” ways to be a girl and the “right” ways to feel and act around other girls and boys, including that one “special” boy I’d find. I will spare you the details, they are equal parts absurdity and humiliation.

It wasn’t that I didn’t know he was wrong and that I really was a lesbian. It’s just that I was 15 and at that point the most important thing in the world to me was to be just like everyone else, to be normal, and that is what he was offering me. So I tossed my gut feelings aside and week after week my re-education into normalcy continued. Until eventually my ever increasing problems with drug and alcohol abuse, as I tried to drown out the parts of myself I hated, became more urgent than my learning to be a proper girl.

Eventually, when the lies and the hiding and the shame became more than I could bear, I told my parents. While it wasn’t easy for them at first, they offered me love and acceptance of who I was. They could see what the other alternatives were doing to me.

While this was a long time ago, and I am certainly happy with who I am today, I ask this.

What if on day one that therapist had simply said to me.

There will be some obstacles ahead for you to deal with but you have to know you are perfect just the way you are.

What if he had said to me.

Yes, some people might make fun of you,  some people may not understand or like that you behave differently than they expect. But those people are wrong and I will never be one of them. You will always have a safe place to be your true self here with me.

What if, instead of trying to fix me on that day, he had given me some books written by gay and lesbian adults so I could see the possibility of others like myself living happy lives? What if he had referred me to a group for LGBT teenagers so I could meet and talk through all these things with other people just like me?

What if the goal had been to love me, support me, assure me I was just as I was meant to be instead of to fix me?

Which version would have been more effective for me? Which version would be more effective for our autistic loved ones?

Is it a perfect parallel to autism? No, but, my god, I see it way to often. I see us teaching our autistic kids they are broken. I see us teaching our kids that the best way to get by in the world is to learn to pass for normal instead of learning to feel good about who they are and advocate for their right to be themselves, no matter who it makes uncomfortable.

I know a thing or two about passing. I know sometimes it’s a useful thing to be able to do. But, I also know it always has a price. I know the more you pretend to be something you are not, the more you bury the things that make you fully who you are, the more it rots you from the inside. I know that being proud of myself and having someone else hate me for it is a whole lot easier than hiding it and hating myself instead.

How.

About.

Now?

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*Editor’s note: This is not a wholesale indictment of ABA, though I have been, and continue to be, vocal about my concerns about it being applied in its pure, Lovaasian form. Brooke has had both good and not-so-good experiences with ABA and I firmly believe that its potential to help rather than harm has always been directly proportionate to the amount of respect with which it was practiced. I once wrote, “[ABA] has been immensely helpful for us in determining what Brooke needs and how we can help her to mitigate the challenges that her environment presents. It also allows us to see when it is OUR behavior that is triggering or exacerbating hers. But ABA can also be harmful. When it is used for the purposes of behavior modification without regard for communication. When it is used indiscriminately. When it is used to change behavior in order to make it more palatable to us rather than more effective for our children. And, in the worst cases, when it veers into aversives. So while I’m not tossing the proverbial baby out with the bath water, I do stand firmly against its use when the goal is indistinguishability for its own sake. Which is why this post IS, without question, an indictment of Gay Conversion Therapy, ABA with the goal of assimilation, and the disregard for the inner lives and disastrous lack of respect for the long-term emotional well-being of the people on whom these types of “reparative therapy” are practiced.

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12 thoughts on “reparative therapy

  1. they offered me love and acceptance of who I was….that is all anyone really wants, regardless of what makes them “different”. We are ALL different. That is what makes us special and each one of us special humans deserve to be celebrated for what and who and how we are! I love this post!

  2. I cringe every time I hear the word “cure” used to describe a therapy that could be used to “treat” my son, who is autistic. No, just, no. He doesn’t need to be cured or treated for anything. Good analogy.

    I will add that we do choose to do ABA, however, our provider does not subscribe to the traditional methods, and she and her team are always respectful… And my son knows it. He is treated as a person of value. They are just helping him build his toolbox for life. They work on communication and academics and vision therapy and are simply wonderful.

  3. We use ABA with Baguette, but our focus is very much on giving her MORE tools to use with the world, not on changing who she is or taking something away from her. Our providers have been very responsive to us and to her, and have always tailored their methods to her as an individual. I can see how different providers would result in a different experience that would not be as positive.

  4. Did you see this piece in NY Magazine: http://nyti.ms/1o7votc? I wasn’t sure what to make of it. The title alone, The Kids Who Beat Autism, seems misleading and potentially inflammatory. These teens and young adults still have autistic traits. They just no longer meet diagnostic criteria for ASD.

    • I did. And I tried to read it. And then I had to stop. Sometimes it’s just more than I can handle. I’ll try to go back to it, but I’m just not able to do it right now.

      • Take care of yourself. I could see how that sort of piece would be inherently triggery. I felt like the readers’ picks comments were probably more nuanced than the article itself.

  5. I found your analogy very interesting. As the mother of both a gay son and an autistic son, I am particularly sensitive to benefits and dangers of the labels we use and the pressure to fit in. I actually had an elementary school principal tell me once that if I could just teach my autistic son to “act normal” then all of the bullying he was suffering would stop. It was in that moment I knew that the best thing I could teach my children was that I accepted and loved them for exactly who they are (and to pull them out of that school). It is not easy to watch your children suffer because other kids have issues with your child not acting or presenting themselves as ‘regular’ but reinforcing that they are okay just as they are, is critical to long term happiness. Now that they are 18 and 20 I see the wonderful young men they have become. When my 18 year old came out last year during his senior year of high school, I asked him if the other kids gave him a hard time, he just smiled as said “Not at all, most kids are intimidated. I like being the alpha gay.”. I was so proud of the confidence he felt in being himself. Do I still work with my Aspie to help him navigate through the communication challenges of college, absolutely. But it is about teaching him how to self advocate and work with the way his brain is wired not to make him behave like NT students. In the end while I do not subscribe to ABA I have to respect that what I believe is the best way may not be true for everyone. Thank you for your insightful writing.

  6. Any approach can be used constructively and compassionately or used in a cookie cutter manner that is unsuccessful or harmful. ABA is no different. Currently, ABA has the strongest evidence base for helping children with autism. If your child isn’t severely self-abusive or aggressive to the point where the family is constantly in a state fear then maybe ABA is more of a life-style choice than a life line to help address these serious challenges. Of course, it doesn’t always get the results we hope for. We don’t know enough about autism at this point in time to say which types are likely to be helped by ABA or not. I have seen 2 students with similar profiles who each received 15 years of high-quality ABA servides: 1 gained few additional skills, the other made huge strides in communication, self-help, social, and independent liviing skills. Its not so much about the therapy as it is about the disability. I like medical analogies. There are many forms of cancer. We wouldn’t say that a therapy that is effective for 1 type of cancer is junk because it doesn’t work for other types of cancer. Currently, we think all autism is monolith. It probably isn’t and when we know more, then we can likely identify which treatments work best. I think the reparative therapy analogy is misplaced. I think you can love your child for who they are but still wish that the challenges of autism weren’t there or could be changed. No parent wants an aggressive or self-injurious child to be that way because “that’s who they are”. They want them to communicate their needs more effectively and for them to be able to participate fully in family and community life. No parent wants their child with Asperger’s to be arrested for misusing social media because of their social misperceptions because “that’s who they are.” Shouldn’t we help these individuals change?

    • Art, if you read what I’ve written in more detail (as in the link) you’ll see that I don’t in any way, shape nor form advocate leaving our kids to their own devices. Giving our kids the tools to understand and manage and effectively communicate within the world does not change them. Insisting that they stop stimming simply because it makes them stand out and identifies them as autistic? That’s changing them. Insisting that they make eye contact when it is painful for them to do? That’s teaching them wothouot respect for their internal experience. Please don’t conflate teaching kids to manage the world — as all parents and teachers do all kids — with insisting that a human being hide who they are and / or not respecting one’s internal experience and unique identity. They are decidedly not the same things.

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