9.22.2017

Me and Leo and The Doctors

(I am talking about autism pseudoscience, not saying, "Yes, they're real.")
[image: Screenshot from the TV Show The Doctors, with me gesticulating
next to B.J. Freeman, a white woman with silvery shoulder-length ombre hair.]
I was on TV show The Doctors earlier this week, and was so glad to have the opportunity to speak out against bogus, dangerous autism treatments. I was glad even thought it meant talking about all the crap we put Leo through when we didn't know any better—which is why I co-founded Thinking Person's Guide to Autism: so people can learn from me, and not make the same mistakes for lack of guidance. (What you cannot see in the video below, alas, is that I was wearing Star Trek socks in honor of being on the Paramount Studios lot.)

[video description: A segment from the TV show The Doctors, with me talking about autism
pseudoscience, and then Dr. B.J. Freeman talking about ABA therapy while I grimace.]


The show started out by exposing MMS/bleach enemas as an autism "treatment" for the abusive scam that it is, and I'm glad the hosts pointed out that if you're afraid to talk to your doctor about something you're considering doing to your kid, that should be a red flag. Then I spoke about how I fell for autism pseudoscience (sigh), and how misguided such approaches are. Here's my quote that they used:
"Every step of it perpetuating the fear and the stigma and the misunderstanding that autism is treatable and curable when autism is how your brain works." 
[image: Spreadsheet of the bogus autism supplements Leo was on in 2003,
projected on a screen behind the four hosts of The Doctors TV show.
A superimposed title reads "Dangerous Autism Treatments Exposed?"]

The show even displayed the spreadsheet of supplements and other crap that I let that carpetbagger DAN! doctor talk me into using on Leo. And about which I was pissed off, even at my most circa-2003 hopped up and credulous. Here's the actual document, if you want to scrutinize and roll your eyes more extensively:

All the supplements Leo's DAN! doctor had him on. Sigh.
[image: Spreadsheet of non-evidence-based supplements for
"autism" treatment, categorized by type versus dosage and
other factors such as "tastes like shit," above a corresponding
photograph of the bottles of supplements themselves.]
And then I got to talk about how awesome Leo is, which is always great. And even better, the show's doctors and experts mostly focused on how autism is neurology so "cures" are misguided and not helpful, that we need to focus instead on helping autistic kids be their best selves.

And then the segment turned into a group paean to ABA therapy, which made me visibly roll my eyes (they caught THAT on tape) and slow clap, because pretending like ABA is the best and only medically-approved way to help autistic children is not only not true, but is disingenuous given how much ABA gets called out by autistic people and allies as a ... dangerous autism treatment.

Dr. B.J. Freeman of UCLA, the woman next to me in the screenshot and video above, was their ABA expert, and even though she's fought against autism pseudoscience and is largely responsible for clinical recognition that sensory issues are central to being autistic, she did not address critiques of ABA in any way. (And yes, anyone who's been following along knows that Leo is in what is formally called an ABA program, so I'm working on a post—because while there are so many good critiques available, I've yet to see an analysis that tackles ABA's fundamental dangers to autistic kids, addresses why it is near-universally endorsed, and helps parents navigate those problems while doing right by their autistic kids.)

The experience of listening to doctors who seemed to care about autistic kids' welfare got me thinking about Leo's own doctors, and how great they are, and how much he has grown with them. The photo below was taken earlier this week, of Leo and his ophthalmologist Dr. Kim Cooper, who is the greatest. She has been working with Leo since he was three, and he has gotten to know her, and her office routine, and the procedures he will go through. Dr. Cooper is careful to avoid any unnecessary procedures, and often takes extra steps to accommodate Leo, such as examining his eyes with hand lenses rather than via machine, if that's what works best for him.

Leo and Dr. Cooper are friends
[image: Leo and Dr. Cooper, a white woman with glasses and short brown hair, 
in an ophthalmology exam room, smiling at each other.]
Obviously Leo has matured as well, but the fact he and Dr. Cooper have grown and learned together has made a huge difference in my son's ability to get good medical care.

I'm glad mainstream TV doctors are doing better by autistic people like Leo, even though they still have a lot to learn. And I'm glad Leo has so many good doctors in his own life.

9.15.2017

Notes From Your Friendly Neighborhood Inclusionista

Now that summer is over, I have time to lay out my thoughts about the semi-recent SF Autism Society blog post: "Inclusion Sucks, or Why My Son With Severe Autism Has Nowhere to Swim This Summer," written by a friend, Feda Amaliti. Her article takes "inclusionistas" to task for our outlook, since people like her exuberant, high-support autistic son—a young man very like my own Leo, who also takes up a lot of space wherever he goes—have so few real-world participation opportunities, swimming or otherwise.

I want to make this as friendly a response as possible, so I think it's important to start by clarifying terms: Inclusion, my lovelies, is a real and basic human right, and it simply means both Feda's son and mine have the right to be out and about in the world, and not segregated or hidden away as used to be the default for the generations of high-support autistic people before them. Inclusion does not mean forcing our kids to be in places they don't want to be, that aren't set up for them, or in which they aren't welcome.

But even when we embrace inclusion as the baseline for our sons' rights, our sons still don't get to do all the things—but that's because of accessibility barriers, not because inclusion itself is a flawed concept. Even though The Americans with Disabilities Act (ADA) installed accessibility as the law of our land in 1990, in practice enforcement is slippery (and imperiled, call your members of Congress), as wheelchair user Robyn Powell observes:
"Of course, passage of the ADA did not make ramps and elevators magically appear; nor did it immediately halt discrimination against people with disabilities. Progress takes time."
 Accessibility law is not accessibility reality. Photo © Richard Downing
[Image: Two white women (one in a wheelchair, one sitting on the floor)
in front of a museum exhibit that says, "Despite the success of 504 and
the ADA, people with disabilities still do not enjoy full access
and inclusion in today's 
society." The wheelchair user is rolling her eyes
 and the other woman is 
making an over the the top expression
as if she's shocked by what the exhibit says.]
That gap between ADA law and universal implementation means Feda is within her rights to be angry about how few pools are accessible for guys like ours: the situation really is completely f***ing frustrating and unfair. And so the battle must continue, on all accessibility fronts, so that our our sons—who won't be kids for that much longer—get to have All The Opportunities they deserve.

The accessibility issue is also why Feda's worries about her son (or mine) being kicked out of autism conferences are misplaced. Our sons would be welcome at any autism conference worth attending—but that doesn't mean our guys would want to attend. That has to do with another aspect of accessibility: accommodations. Even though autism conferences should be autism-friendly environments, few actually commit. Some planners will make a token gesture, such as having a quiet room; but most sessions, panels, and posters occur in sensory-onslaught environments, and very few happen in a way that would engage, or be accessible to, our dudes.

All these barriers to accessibility and accommodations mean it's not reasonable, at this time, to expect our dudes to be able to go everywhere, even places that openly want to include them. Even though my own son has so worked so hard on his coping skills and boundaries, I still don't take him to places that I know are too taxing, like loud restaurants, crowded public festivals, or quiet concerts or ceremonies. Sometimes this means missing important family events. And while those situations can be bittersweet, they are also part of understanding what reasonable accommodations for Leo look like.

Not everybody understands our autistic sons' reality, which means we are constantly having to educate the people in our lives, and hope they will at least try to understand that our openly, obviously disabled dudes are usually doing the very best they can. We can help by sharing information such as why autistic meltdowns happen; why autistic "behaviors" usually have reasonable causes; why stimming can be a joyful, therapeutic and not a behavior to suppress; why grabbing food is never OK, but sometimes impulse control is a thing despite knowing better—so our friends, family, and social media network will have realistic expectations about what our sons can and cannot tolerate. Inclusion isn't going to get any easier if we let other people demand that our autistic sons only behave like non-autistic people.

The more we're out and about, the more we're visible and cheerfully unapologetic about it, the more we show the world what inclusion looks like on our sons' terms, the more other people will get what inclusion actually means. This includes (for me, at least) minimal patience with people who are uncool about our sons being in places they have every right to be, and when our dudes are not violating anyone else's space nor causing disturbances.

It's also OK, on tough days, to retreat inside a circle of comfort while we figure out how to do better by our guys next time. For me, these comfort circles mean hanging with people and going places that both want and understand how to accommodate Leo. These circles may not always be as big as I wish they were, but that's fine as long as they contain people who stick by us even when it's not easy. Who understand that Leo is the greatest dude there ever was, and also that there are some scenarios that don't work for him. Like the small local grocery store with the cashier who has witnessed Leo need to leave suddenly on more than one occasion, yet teases our dude about his teenage beard scruff; or the visiting friends who don't mind that Leo considers their guest room bathroom his bathroom, and who understand that when we accompany them to local tourist destinations, Leo and I might cleave off a little bit. Or a lot.

With Our People, at San Francisco's Exploratorium
[image: Seven white people of different ages and genders, posing happily
together. Leo is in the center, actively enjoying sitting on an oversized chair.]
What helps me when I get frustrated about the smallness of Leo's circles is to remember that Leo's generation has so many more inroads and opportunities than autistic people just one generation older: things like sensory friendly movie and theater showings, museum times, and adaptive surfing. These opportunities don't work for everyone, and some of them are kind of the opposite of inclusion, but they exist, and at the very least they let our dudes get used to those spaces and activities, and possibly lay the foundation for going to those places more spontaneously.

Leo boogie boarding with a A Walk on Water
[image: Leo, a white teen dude wearing a wetsuit, on a blue boogie board
in the ocean, with the support of a Latino man in a wetsuit too.]
But to return to the swimming thing: Our area has some great disability-centric regional pools like the Pomeroy Center in San Francisco (near the Zoo), with its open swim hours, plus the Timpany Pool at San Jose State has a drop in program. Visits to both require planning, so that spontaneity thing is missing, but at least there are options. And we have found that Leo does best in public pools with 1:1 support (sometimes a parent, sometimes a regional center aide). That's just what his life looks like, and I also realize that's not how all regional center families would choose to allocate those precious respite hours.

Surfers Leo and Mu, photo © Feda Amaliti
[image: Leo and Muhammed, a white teen dude
and a Levantine-American young man, both
wearing wetsuits and life jacket, on a beach,
overlaid with white text reading, "Leo & Muhammed
 like their mamas got nuthin but love for each other."] 
Feda says she dreams of an autism island where everyone gets her son, and nothing has to be explained. Thing is, islands like that have been under construction for a while—by the autistic community, and the disability community—the larger communities to which autistic people like our sons belong. While I adore my fellow autism parents, and have learned so much from them, I have also learned a butt-ton more from autistic and disabled adults about how to help Leo find his way in the world, including what reasonable inclusion looks like for him. So, and maybe I should have opened with this, I'd like to remind Feda that Leo and our pool (the reason we moved to our house) aren't that far away, and that we already do have her island waiting right here, whenever she and her son are ready. (Update: Feda sent me this photo of Leo and Mu, after reading this post.)

----

P.S. It's not as though Feda is the only parent conflicted, confused, or fed up about 'inclusion.' This is probably because the term 'inclusive' is pejoratively perceived in some autism parenting spaces when used as a disability rights-specific adjective, as with inclusive communities and inclusive education. So, again: We need to think about inclusion the same way we think about feminism, or fighting racism: as centering basic human rights, and as the default right thing to do.