The Case for ABA

Why I put my son through a controversial, damaging therapy

TRIGGER WARNING: I talk about Applied Behavior Analysis and its practical applications in this post. But for those that experienced trauma from ABA, there may be nothing practical about it, and should not read this.

Before I go any further, I want to make a statement about the abuse allegations against traditional Applied Behavior Analysis Therapy, or ABA. I think they are absolutely true. It’s not really a question that forcing children into a behavior that is unnatural for them is bad. That is a bad idea. I also think it is the worst application of ABA imaginable.

You see, the therapy itself, is not what is damaging. It is how it is used. It is only a tool. It’s like a syringe. With the right content, it’s a life saver, with poison.. well, you’re done. (I know, I know, this is technically the kind of semantics the gun lobby uses. Guns don’t kill people, people kill people. But the gun sure does make it easier, right?)

So with that in mind… Why would I, a neurodivergent person, who believes in the autonomy of autistic people, put her son in ABA therapy?

Trust me, it’s not easy. Everyday I question if it is the right choice. And everyday I weigh the benefits over the consequences, and choose whether I want him to continue.

And before I go into my reasons, I would like to refer you to an autistic adult who actually went through ABA. His opinions are the same as my own, but he has the legitimacy of having actually been through ABA therapy. And here is another account of an autistic man who went through traditional ABUSIVE therapy. His description of forced eye contact triggered real panic in me. His argument is very good. Back to my post…

Again, why? Why would I do it? There are two reasons…

Continue reading “The Case for ABA”

Autism Speaks

Okay, so I came here to do a piece on Autism Speaks. But uhhhhgggg…. it just depresses me. Depresses me is actually the wrong word. It turns my stomach into knots. It triggers my conflict anxiety, and then turns it up to 11. So the reality is, I really just don’t want to talk about it.

Anyway, many people have done it better before me, so I will give you my opinion then a list of links and information for you to check it out yourself.

Autism speaks came on the scene in the mid 2000’s around 2005. The diagnostic criteria for children had just been opened to include much more of the spectrum including what was known as Asperger’s syndrome. So there were a lot of parents looking for resources. Autism Speaks came about to fill that resource void.

They are technically a non-for-profit charity but the way they use the money that they raise is often a little suspect to most actual autistic people. They also do not consider the voices of the autistic community when dishing out funds or grants. And for the longest time, perhaps even still, their main focus is a cure. To most autistic people, talk of a cure is insulting.

In my opinion, we don’t want a cure for autism. We want cures for the hundreds of comorbid conditions that often plague autistic people. We would like to be autistic without ADHD, without OCD, without Apraxia, without horrible gastrointestinal issues, without food sensitivities, without immune disorders. The list goes on and on. Now you may say, but you have all those things because of your autism. I don’t think so. Because you don’t have to be autistic to have ADHD. You don’t have to be autistic to have Apraxia. You don’t have to be autistic to have a learning disability. Being autistic might mean that you are more susceptible to these conditions, but we are more susceptible to A LOT of things. Like hyperosmia; do you know who else gets hyperosmia? Pregnant women. Are we looking for a cure for all pregnancy? Are we trying to “END PREGNANCY NOW”? Do we pity the people who have pregnant people in their families? No. No, we don’t.

But Autism Speaks did or said all those things to autistic people, or more in particular, the families of autistic people. They are trying to turn their checkered past around with a more kind and inclusive approach, and I applaud that. But I also share the opinion of Sarah Turner aka Autistic Barbie, she tweeted @autismspeaks when they introduced their new “rainbow puzzle piece” to represent a new era of inclusivity-

How powerful would it be if your organization just admitted ignorance & fault towards the mistakes you made in the past, issued a public apology, and subsequently, truly included autistic individual input moving forward?

Imagine the impact and power of your transparency in allocation of funds, restructuring, rebranding, creating a new inclusive organization and designating leadership to autistic people within it…isn’t it time to set your ego aside and just work together?

-Sarah Turner

Honestly I think it has a lot to do with the damn puzzle piece and identity politics. So many people really grabbed hold of Autism Speaks identity, in a time where all they wanted was to help their children. So the puzzle piece logo became a rallying cry for their community and their children. But their children are grown up now, it’s been over fifteen years, and they don’t like what Autism Speaks has to say about them. (I won’t even get into the extremely insulting media campaigns that portrayed autism as a deadly disease or a serial killer hiding in the bushes. It was shameful.)

But the parents have already internalized the puzzle piece as part of their identity, and they can’t see why #ActuallyAutistic people are getting upset about it. So they start developing ideas like “Autistic privledge” or functioning labels that still portray their children as somehow less than human.

No one is arguing against the fact that some autistic people will need support their entire lives. No one is doubting that some autistic people have serious intellectual disabilities. All we are saying, is we are alive. And we have worth. The majority of us aren’t a burden. And none of us are dying from autism. If anything, we are dying from horrible “cures” like bleach enemas. Or the biggest “cure” of all, familicide. That’s right, disabled people are being murdered by their families because they are “better off dead.”

Now… I am not saying that Autism Speaks wants to murder disabled people. I don’t want that to be what you take away from this post. But they are perpetuating a culture of infantilization and abuse in the guise of good parenting. And I never want to support that. In fact, if Autism Speaks cares so much about the “burdens” autism families face, we really need financial help for medical bills and safe housing for intellectually and physically disabled adults who need more support.

Please, please keep your puzzle pieces, they are sweet and charming. But also, separate your icon from a company that does nothing to support your children. Start seeing your children as people, not emotional burdens, not permanent babies, and most importantly, not victims.

Remember, you don’t have to be “high functioning” to live a good life. You don’t even have to be smart. I’d say being smart often gets in the way of that. You need a good support team, love, respect, and a little bit of space. So if that means that your intellectually disabled adult autistic son lives in an apartment over the garage, or a SAFE community home/school where he is respected and watched out for, or even, his childhood bedroom with a lock on the door that he controls, that is still a successful life.

They don’t have to be a lawyer like my husband, or an advocate like Sarah Turner, but they do need the respect that all human beings deserve.

So next time you hear someone talk about Autism Speaks, you don’t have to get angry, that’s not how you change people’s minds. But you might consider suggesting the Autistic Self Advocacy Network, or any of the other autistic support groups that include autistic collaboration and respect.

Autism Speaks made people aware of Autism. That is good. I will give them credit for that. They have also raised thousands upon thousands of dollars, that’s great. I just would like to see them change. Do like Sarah said and put aside the past and listen to the community they claim to serve. Honor the new diagnostic criteria about women and stop suggesting to “light it up blue.”

(Yes. Blue as in boy. Because only boys “get” autism. WTF.)

And as a disclaimer, I do not check off all the boxes as a perfect autism advocate. I think that certain comorbid conditions of autism are debilitating. And if there was a way to wipe out all those conditions with the elimination of my personality type, I would probably take it. I would do that for my son.

(My son has both Apraxia and Dyspraxia. It is downright painful. I would legit wipe out everyone’s personality type if I could help him speak without the anger and frustration that builds up with his processing issues. Maybe if we were all the same, people would stop being ableist assholes. Probably not.)

I also put my son into a preschool that uses ABA therapy, a controversial, sometimes emotionally harmful, practice. We have our reasons, most of them having to do with the availability of other therapies, insurance coverage as well, and I would be happy to tell everyone about our experience, both the wonderful and the questionable. (It’s 95% wonderful, by the way. Although I think that has more to do with his therapists and this particular school than ABA therapy itself.) So there are no easy answers when it comes to such a complex conversation.

The point is… you can’t “cancel” Autism Speaks without erasing a whole generation of parents who just wanted to help their children. And you can’t give Autism Speaks a pass just because they want to have a “year of kindness.” I believe those that support Autism Speaks should evolve, but I also don’t think they should be regarded as monsters. Wrong and misinformed, but not monsters. And they should be allowed to keep their puzzle piece tattoos because they are darling, and they had to hurt.

It’s a lot to discuss. Hence, the need to bring in the other experts… Here is a list of links to help-

I weigh…

As you know, I’ve recently started exploring the wonderful world of Instagram. Yes, I’m in love. Not just with the platform, but with several new faces and hashtags that I am following. #effyourbeautystandards is both delicious and nutritious for my mental health. That’s where I found the downright glorious Tess Holiday. (It’s also where I have had to practice my “no flame wars” rule, because damn, people are mean.)

But it’s also where my love of one Jameela Jamil has been forever cemented in my heart.

I did not find Jameela on Instagram, though. No, I first really heard of her, Jameela Jamil, the person, not just a character on “The Good Place”, because people were being so damn shitty to her. Oh, and that hasn’t stopped by the way, just look at what her boyfriend James Blake had to say recently…

Good man, James. Good man.

No, the first time I heard her name it was because the LGBT+ community was outraged that she had been cast on the HBO ballroom show “Legendary.” For those not in the know, ballroom does not refer to the dancing you are picturing right now. This is not dancing with the stars. It’s referring to the ballroom culture started in the 1980’s (check out the documentary Paris is Burning, then you’ll know.) Now this is not my scene so I am not going to say that she was the right person for the job, that’s not what drew me into this particular media splash.

No I came in, when a lot of people basically decided to “cancel” her as a judge on this show because she is not LGBT+… BUT SHE IS… She’s queer. And after being forced to correct a lot of misplaced anger, she decided to come out as queer, even though she shouldn’t have had to do it at such a time. Did this appease the community? NO, they turned on her more. A large portion of them pointing to the fact that she was dating a man, again erasing bisexuals from the “authentically” LGBT+ community.

As a queer woman, madly in love with her cisgender husband, you can bet that this put Jameela on my radar. I decided then and there that I would go to war for this south asian queer goddess, any day. (That’s how you know I love something, my loyalty is unparalleled.)

So to find her I_weigh movement on Instagram, well, my pledge for war in her honor went from a skirmish to a full-body measure of devotion.

The I_weigh movement is about “body neutrality.” Trying to turn the focus from bodies and looks to interior beauty. I know, I know. She’s not the first to do this. But I think that she might be the first to have the tenacity, and the platform, to really take it somewhere.

She has a new podcast by the same name coming out on April 3rd and you better believe that I will be listening.

Just like Jameela, I had some health problems that made me gain A LOT of weight. (I also fell in love with a man who introduced me to the idea of takeout. So it wasn’t all side effects.) Then like most women I had a tough time with yo-yo dieting. I lost weight when I worked for Jenny Craig but then gained it back when I left to start writing full time. I lost weight when I started protein and LCHF diets, but then gained it back after emotional meltdowns dropped my manic ass right off the wagon. Around the same time I had a baby, and well, hormones + wrong medication + medical emergencies + carbs = big FAT mental breakdown. (You can read more about it in my post about my chronic illnesses.) I’m losing steadily again now that I have finally found the right medication, but it’s a journey for sure.

So in the spirit of I_weigh, I want to share some images of myself that I would normally not want the world to see. These particular images were taken when my body was at it’s most endomorphic, or you know… fat. (I’ve lost some weight but I’m actually not that far off from these pics, either. So these are not “before” pictures.) Like you will see on the I_weigh Instagram page, I’ve superimposed some of my more important attributes.

Well, I’ll let them speak for themselves.

Like I said, they speak for themselves.

Instagram Storied

Curating our lives for mass consumption

From that subtitle, you would think that I don’t like Instagram. Could not be further from the truth. I literally just started Insta and I am hooked. I have posted like 36 images and I still want to do more. I do have one problem though, other than a new digital time-sinkhole I have found myself in… Because of my OCD, I have to post in groups of three, or my profile becomes unsettling. That is my problem with Instagram, but looking at other people’s pages, I wonder if that is the problem for others?

I don’t think it is. In fact, I think I know the problem.

Social media is the neurotypical’s mask, isn’t it?

You might have heard about autistic masking from me or know it from your own experience, but it’s basically the act that autistic people have to put on to be like other neurotypicals. It’s an exhausting practice that often leads to burnout and serious mental health crises. For me, it’s what lead to a late diagnosis and years of mental and physical anguish.

So the question for me is– if an autistic mask leads to anguish for autistic people, does a digital mask hurt neurotypical people?

Continue reading “Instagram Storied”

Self diagnosing Autism

TO BE OR NOT TO BE…

In one of my most recent posts I officially “came out” as autistic. I told you that I “got” my diagnosis at the age of thirty five, but what I didn’t tell you, is that I was self diagnosed first.

This may not seem like a big deal, but it is. And maybe not for the reasons that you think.

Continue reading “Self diagnosing Autism”

Watch this now…

No seriously, I can’t say this enough. Watch this now.

This TED talk from Hannah Gadsby last year would have transformed my life had I seen it sooner. If you are a woman, a neruolurker, or even a person who has experienced trauma- watch this. If you are a comic, a writer, or a person who has interest in either- watch this. If you are a human being- watch this.

Hannah Gadsby is a true lifesaver. She is a hero in every aspect of the word and I am so proud to be a fan of hers.

So without further ado… Hannah Gadsby.