Tuesday, December 2, 2014

The Autistic Self-Advocacy Network: A Giving Tuesday Org to Support

TPGA Editor Carol Greenburg
[Image: Woman with short platinum hair,
beige skin, rimless glasses; wearing
a red shirt and holding a sign that reads,
"I support ASAN because we're the
best experts on what we need."]
It's Giving Tuesday. And we're just going to quote Ari Ne'eman of The Autistic Self-Advocacy Network:

"December 2nd is #GivingTuesday -- a national initiative in which those who can are urged to make a contribution to a cause that matters. For those of you who can afford to do so, I'd like to ask you to make a contribution to support ASAN's ongoing work to empower people with disabilities and our allies. If you can't afford to make a financial contribution, consider urging your friends on social media to do so by joining our thunderclap on Facebook, Twitter or Tumblr.

"Thank you for your support this year, and in the year to come. As always, Nothing About Us, Without Us!"

If you want to make your own ASAN UNselfie like TPGA editor Carol Greenburg is doing here, you can find the template and instructions (and a great gallery of UNselfies) at ASAN's Facebook page.

Monday, December 1, 2014

Voices for Vaccines: A Giving Tuesday Org to Support

We’re grateful to our friends at Voices for Vaccines for helping us bust vaccine-autism myths while supporting autistic people. We’re also grateful for their tireless work in making sure the anti-vaccine voice is not the default parent voice broadcast during conversations about immunization.

Tomorrow, December 2, they are asking for our help in getting pro-vaccine voices heard by gathering 1,000 donors who are willing to put their money where their anti-disease opinion is and give to VFV as part of their Giving Tuesday drive.

TPGA is happy to support Voices for Vaccines and to take these simple steps to help spread the word to 1,000 potential donors for tomorrow!

Here's how you can help:

1) Join the Facebook event and invite friends: https://www.facebook.com/events/666509686779809/

2) Visit VFV on Giving Tuesday and donate any amount, great or small. www.voicesforvaccines.org/support

3) Share this video widely with friends, family, and colleagues:

Thank you for helping all our kids stay healthy and happy!

Sunday, November 30, 2014

Autism Parents, Self-Advocates, and Shared Concerns

Shannon Des Roches Rosa

Let me tell you something that may or may not surprise you: When it comes to public discussions about autism, parent and professional voices tend to dominate, and autistic voices tend to be excluded. While that dynamic is changing, primarily due to autistic advocates' refusal to be sidelined in stories about their own community, and in part through the many communities that encourage parents to discover, listen to, and respect the experiences of those who have lived autistic lives -- autistic voices too often still get dismissed, ignored, or outright disrespected.

I'm not begrudging parents of autistic kids the right to tell their own stories from parent perspectives, obviously, being that I'm one of those parents myself. But I do find it unsettling when parent stories mention autistic perspectives only to belittle or reject them, as Anne Spence did recently in her otherwise thoughtful story When He's Older and Doesn't Have Autism Anymore:
"There are people in the autism community who make parents of autistic kids feel ashamed and guilty for wishing their child didn’t have autism. Autistic self-advocates who scream “That means you hate us as people!” and “You hate autism? Then you hate your kid!”
"Well, I’m calling BS."
Believe, me, I consider it totally reasonable to have feelings about parenting a child with disabilities (and that child's siblings) in a society that treats those kids as special angels or pariahs, and rarely as human beings with feelings and rights. It's totally reasonable to be pissed as hell about the difficulties our kids face every day because that society considers their needs and rights afterthoughts or annoyances -- if those needs and rights are considered at all.

But it's not acceptable to revile autistic self-advocates as a group, given that they more than anyone else understand what it feels like when society dismisses and mistreats someone because of their autism. Nor is it acceptable to ignore thoughtful perspectives on why saying "I hate autism" is hurtful to autistic people. It is especially not acceptable given that autistic writers so often share their life stories in the hope that today's children will have a chance at being better understood and accepted, and be able to live comparatively happier lives. 

Nor is it fair to characterize autistic self-advocates as being in denial about autism and disability. Consider this message from the autistic author of the blog Real Social Skills, from the post You don’t have to like being disabled:
"Acceptance creates abilities. Acceptance makes it easier to be happy and to make good decisions. But acceptance does not solve everything, and it does not come with an obligation to love absolutely every aspect of being disabled."

It's also unfair to frame self-advocates as the enemies of parents, given that the autism parent community includes autistic parents of autistic kids. Parents like Becca Lamont Jiggens, who had this reaction to Spence's article:
"Why, as a community, are we still surprised that autistic people take language literally and are supremely sensitive to perceiving criticism?

"As a parent, I fully understand this piece.

"As an autistic adult, I fully see the offensive spin in it.

"The emotional reactions of a 9 year old boy do not occur in isolation, and are well informed by the ableist construction of society and social expectations. It is only by comparison to what is deemed 'normal' that any value judgement can take place to elicit an emotional reaction. Significantly, too, the emotional reactions of a nine year old will necessarily have a major impact on the emotional and psychological development of their younger sibling which isn't considered at all in the piece.

"No-one would suggest an aggressive attack against a young boy for expressing an emotional reaction. However, if that emotional reaction would hurt someone else, a parent's job is to help the child stop having or displaying the hurtful emotional reaction.

"An analogy: If a child was happy because of a sibling's failure, any parent would act to teach the child that being happy about their sibling's failure is hurtful to their sibling, and therefore not an acceptable emotional reaction to have or display. As parents, we take action when our children have inappropriate, hurtful or otherwise inappropriate emotional reactions because providing that kind of moral and social education to our children is our job as parents!

"I hear the call of fellow self-advocates to NT parents to be 'Change the world not your child.' So there's something that I don't think NT parents grasp in the way it is intended about adult self-advocates calling on parents to create that change in the world, and be an active part of making the world a better and easier place for autistic people to live in.

"With the current UN women's rights campaign He for She, perhaps now is a good time to re-frame the interaction between self-advocates and parents.

"Something like You for Me?

"Autistic people alone cannot create a world where autistic people and non-autistic people can live well together, we NEED the help and support of non-autistic people to create the world in which autistic children and non-autistic children can grow up with an equal expectation that their needs will be met and that an equal expectation that they can live their life on their terms."
And then there's the Wheaton's Law aspect, as per autistic self-advocate Patricia George Zwicker:
"We are self advocates because no one else was there for us, does no one get that?!?! Do you know what we have to go through to even get the ability to rise up and advocate for ourselves. Parents have the community of parents. What do people like me have? 45 yr old, dx in my 40's, no kids, no resources, only my ability to use my "voice" to try and not have another person end up like me. Adult autistic burnout kills us. Mine manifested as a 50 minute seizure, needed to be placed in a coma. So I fought damn hard to even be here typing this. Taking a go at my advocacy is paving that road for autistic children as they become adults.

"Want to know why I self advocate? What drives me? I self advocate because if I didn't I'd be dead. Period. No one fought FOR me, they fought me, still do. And no way do I want another Spectrum person to go through what I did. I care that much. I certainly care far more than I ever get back. That's the life of a self advocate with no support.

"If you can't make it better, at least don't make it worse. Thanks for your time."
Spence's article appeared in The Mighty, a site about special needs founded by parents with good intentions. It's a site that does incorporate the perspectives of people with disabilities rather than just those of parents of people with disabilities, as in Courtney Barnum's post on Functioning Labels. My hope for The Mighty is that, in the process of learning how to turn good intentions into good resources, its staff also learns that it can only hurt a community to pit its members against each other.

Monday, November 17, 2014

One Autistic Teen's Disneyland Success Story

Shannon Des Roches Rosa

Have you or, if you're a parent, have your kids ever been to a Disney theme park? If so, does it hold you or yours in thrall the way it holds my teenage son?

Leo has been asking to go to Disneyland nearly every day since his last visit 20 months ago, because the Land of Mouse is his very favorite place, largely thanks to its disability accommodations. But after that Happiest Place on Earth changed that disability pass system last year, I balked at going. One of Leo's personal philosophies is Anything Different Is Bad. Really bad. So a different Disneyland experience would be Really Bad. Plus I heard nightmare accounts of vacations gone sour, endless lines, folks having meltdowns, and more (DRtC*). I didn't think Leo deserved to have a rotten experience at a place he considered his personal Wonderland. Best to stay away.

But he kept asking. He kept watching YouTube videos of Star Tours and California Screamin'. And I kept thinking it over. And I started thinking maybe. And I read reassurances from many folks (Moriah, Ellen, Jess) that the system was different and somewhat bumpy but doable. And his generous grandmother had given him and his little sister Mali Disney passes as 2013 Christmas gifts...

And I thought, hey, maybe it could work. Maybe the key to avoiding bumps was not adapting to the new system itself, but going during a low attendance day. So I checked the IsItPacked.com Disneyland Crowd Forecast calendar for a low attendance day near Leo's birthday. And it said that the day after Veterans Day, which was a Wednesday this year, would be a mellow day.

So we went on the day after Veterans Day. (Leo's big sister Iz and my husband Seymour, sadly, were not able to come with us.) We went for just one day, in case things went kablooey. (Spoiler: things didn't go kablooey. Not once.)

I think Leo had a great time, such a happy time, because we planned carefully. We stayed at the on-site hotel for just one night, so we could have a relatively relaxing drive on the way down, and a relatively relaxing pre-Disneyland afternoon and evening at the hotel pool, at the hotel restaurant, and wandering around the adjacent Downtown Disney shops and restaurants. Leo likes all of those places.

[Image: Leo sitting on a lounge chair,
with a hotel pool in the background]
(Side note: I was still nervous about Leo having a different experience even after we arrived at the hotel, even during a pleasant afternoon in the pool area, so I asked the good folks of the TPGA Facebook Community about their Disneyland experience and advice. They mostly reassured me that we would be fine.)

Staying at the hotel allows for other conveniences: we could leave our car at the hotel overnight, and pick it up right after we left the park -- no waiting in endless post-closing lines for the parking lot shuttles. We could leave our luggage at the hotel as a courtesy the next day, even after we'd checked out. We could buy our tickets for the park as we checked in to the hotel. We could get Happy Birthday pins for Leo and Mali at the same time, because we were there for both of their birthdays.

Leo's Happy Birthday pin meant that everyone, everywhere -- hotel, park, restaurant -- wished him Happy Birthday by name (Mali, who is slowly starting to care what other people think, declined to wear hers). Leo thought constant happy birthday greetings were great. The hotel pianist even changed his tune to Happy Birthday when Leo walked by. (We were en route to the Lounge, where Leo could chill while I had a mai tai, and Mali went and made Lego racers with a local friend at the Lego shop.) I thought the birthday awareness and recognition was a lovely touch.

 [Image: Leo lounging in a fireside chair,
playing on his iPad, with one leg thrown
over the chair's arm. I did say "lounging."]

Another, really important part of staying at one of the three Disney hotels is that you have access to Magic Hour, which means one park per day (it alternates) opens up one hour early for hotel guests only. Even better? They actually open up the gates 15 minutes before Magic Hour. Which means we got to hit the California Adventure Chamber of Commerce and get Leo's Disability Access Pass (DAS) before the park was even officially open. It was great; there was only one other family in line at the Chamber of Commerce when we arrived.

[Image: the line at California Adventure's
Chamber of Commerce: Exactly one
very blonde family.]
Getting the pass was straightforward. They asked me why Leo needed the pass, and over his bouncing and giggling because OMFG Disneyland, I told them his disability meant he had trouble waiting in long lines. They said "No problem," took a picture of Leo, and printed the pass out.

[Image: Disneyland Disability Access Service
Pass. It has Leo's picture, & lists his name,
the date, place issued, & party number.]
We didn't even need the DAS during magic hour. As soon as the park rides opened, we walked over to Soarin' Over California (which Leo loves, and calls "helicopter!"), and waited only 10 minutes. Leo was ecstatic.
[Image: Leo sitting on a bench in Disney's
Grizzly Gulch, next to an empty sidewalk]
We then walked the nearly empty streets over to the California Screamin' roller coaster, which Leo did not enjoy as much as he remembered, and unfortunately (from roller coaster fan Mali's perspective) did not want to re-ride. There was a bit of sadness over that.

[Mali & Leo leaning on a wrought-iron
fence with a roller coaster and a Mickey
ferris wheel in the background. ]
Mali was especially disappointed, because as you can see from the California Screamin' sign below, the wait time during Magic Hour was all of five minutes, and she could have gone many many many times in a row. Alas. Compromises smart sometimes, when one is not yet ten.
[Image: Digital sign, yellow with red/blue text,
with approximate wait time sign for California
Screamin' roller coaster, reading "5" minutes]
Then the park opened to everyone, and the lines for the popular rides got long, and it was time to use the DAS pass. I was nervous, but all the Guest Services cast members administering the DAS pass logistics were friendly and helpful. And using the pass was much less complicated matter than it sounds: go to a kiosk, and tell the person which ride you want to ride (Don't forget to say "please"). The cast member looks up the current wait time, cuts it in half, and writes down the current time + half wait time as the time you can go on the ride. Then they stamp the ride time with their initials. Honestly, the most stressful part of using the pass was locating the Guest Services kiosks.

Once we got to the rides, the pass worked exactly like the previous disability pass did: you go in the accessible or FastPass entrance. Sometimes you have lines, sometimes you don't. And Leo was fine with any the waiting he had to do, because damn, he was at Disneyland!

[Image: DAS pass inside. Guest services folks
write out rides and times by hand, using a
grid and stamped initials. The pass is white
with a green border, and is passport-sized.]
One caveat: the DAS pass logistics will apparently be changing as of this week, though cast members were not able to reveal much, other than that they all had to go to training. They (and by "they" I do not mean the woman pictured below) did say folks were still finding ways to game the system, by getting multiple passes per family, and splitting up to get multiple times, but then having the whole family use all of those times (as opposed to having two different kids who qualified for the DAS pass and wanted to go on different rides at the same time, which would be fine). Commenters at TPGA also mentioned rumors that people were forging ride times. If you look at the pass above -- handwritten with stamped initials -- I allow how easy that could be for a motivated person to falsify.

[Image: Guest services woman writing out
the next ride and time on Leo's DAS pass.]
The only ride we had to wait more than 15 minutes for, even with the DAS pass, was the new Cars ride. Which was absolutely worth the wait. But there was plenty to do while we waited, because it was (say it with me) a low attendance day. So there were plenty of nearby rides that needed no DAS access because the lines were so short. Rides like Leo's beloved twirly ladybugs. In fact, on this low attendance day, most lines were so short that we didn't even need to supplement Leo's DAS pass with Fastpasses, as many folks had recommended.

[Image: Leo seated in a spinning lady bug car.
His official Happy Birthday Leo pin is visible.]

We also used our downtime between DAS rides to have snacks, meals, and pit stops. We sat on more than a few benches to chill with iDevices or snacks, or just rest. Walking around all day is tiring! Breaks are good!

[Image: Mali & Leo lounging on a bench in Hollywood Land]
The cars ride, again: totally worth it. I recommend it. Even though we only went once because of the long wait.

[Image: Leo, Me, & Mali on the Cars ridecam.
Our car is purple, we are in the front seat.]
One ride we did go on three times was Star Tours. Because it is Leo's favorite ride in the entire galaxy. But we did do the DAS wait time every time, and Leo was OK with that because of other rides he liked that had short wait times. Including that ultimate sensory seeker experience, the Spinning Tea Cups.

[Image: Leo wearing 3D glasses next to the Star Tours
loading area. Star Tours uniformed dude in background.]
You know what else made our visit great? Everyone was just so nice. This is the aspect of Disneyland that is actually magic, to me -- accommodation is part of the the culture. The cast members ask what they can do to help, take accommodation requests seriously, and we didn't have a single encounter with WTF face.

[Image: triple selfie. Mali on left, looking over my shoulder,
me in center, Leo smiling on the right. It's a Small World
topiaries and blue canal wall in the background.]
I think we'll be going back next year, and repeating these circumstances as much as we are able**. Not sooner, because the logistics that make these trips work for us are expensive, even with gift cards from Grandma. And going on a low attendance day requires scheduling sleight of hand and will not be possible for everyone, and indeed for us most of the time. But our trip was such a success. We kind of have to go back, because Leo is leaning against me as I type this, giggling at these photos of our trip, and asking, "Disneyland?"


*DRtC = Don't Read the Comments. No, seriously, do NOT.
**Repeating it minus the doing-it-all-in-44 hours time frame. The wham-bam timing was mostly OK, but a solo seven-hour drive after a full day at a theme park is not something I recommend.

Tuesday, November 4, 2014

How ASAN Helped Issy Stapleton Get Justice

Kelli Stapleton was recently sentenced to 10 to 22 years in prison for child abuse, after attempting to kill her autistic teen daughter Issy. We spoke with lawyer Samantha Crane, who is the Autistic Self-Advocacy Network’s Director of Public Policy, about ASAN’s efforts on the Stapleton case: both in helping the prosecution send the message that disability does not justify murder, and in urging the court to ensure Issy saw the same justice as any other victim of felony child abuse.

TPGA: How did ASAN get involved with the Stapleton case?

SC: ASAN generally issues statements after individual incidents of violence that come to our attention, often statements concerning media coverage. But with the Stapleton case, since I’m a lawyer and I started at ASAN one month after the attempt on Issy’s life, we really wanted to see if we could influence the trajectory of the case, not just the media coverage.

So, on the recommendation of one of ASAN’s members — we get a lot of good input from our membership — we reached out to the prosecutor on the Stapleton case. We thanked her for taking the case on, and for taking it very seriously, and for really pushing to make sure Issy got justice. And we offered ourselves as a resource to educate the court and the prosecutor’s office about the issue of violence against people with disabilities by caregivers.

TPGA: And how was your offer received? Were you able to influence the prosecution, and/or the court?

SC: The prosecutor was very friendly and said that our efforts would really help. What we ended up doing was writing a sort of a Sentencing Statement. In criminal cases, at sentencing, there is an opportunity for anyone to submit a statement to the court, on how they feel the judge should sentence the defendant. For example, Issy sister Ainsley sent in a sentencing statement, I believe Issy’s father Matt submitted a sentencing statement, and the prosecution submitted its own statement. And ASAN submitted sort of a third party sentencing statement through the prosecutor’s office.

Our statement, which is up on our website, really goes into a court-friendly argument about how the sentencing needed to be treated the same as any other incident of violence. The court was hearing a lot of messages from the defense, from other witnesses, about how Issy’s disability was so stressful that it should be seen as some sort of mitigating factor. That Kelli Stapleton had been suffering for years with Issy, and that she snapped — exactly the same kind of messaging that we often seen in the media. Which is very dangerous.

We wanted to make sure that the court understood that stress is involved in almost every incident of serious child abuse, but it should not be seen as a mitigating factor more than any other source of stress should be seen as a mitigating factor. By and large, parents of people with disabilities are able to take care of their children without trying to kill them. And in fact the majority of parents of people with disabilities have less access to services than this mother did. She had gotten her child into a residential placement, there were some issues with her school, but she had been getting a whole lot of help — including securing almost continuous care in the home, a level of support far higher than almost anyone else in the state was receiving.

And the court heard from many of Issy’s family members, many of whom contradicted the mother’s description of Issy. They said Issy was fine with other family members and care workers. Kelli tweeted that aides had offered her tips on how to manage Issy’s behaviors in a way that wouldn’t cause meltdowns, and she rejected their advice. And parents sometimes do know their children better than care workers, I’m not saying whose advice was correct. But it certainly wasn’t the case that Kelli Stapleton didn’t have help.

The final goal for our witness statement is to just keep the focus on Issy, and make sure the judge understands that the case is about Issy, about something that happened to her. Issy understands enough about what’s going on around her that it’s really going to be very dangerous to her — and to many other people with disabilities — if the court sends the message that we should just expect abuse. That her disability is so severe that she should just expect to be abused by those around her because they are so stressed out. And that’s basically what it would mean if the court were to say that the abuse simply was a natural result of caring for a person with a disability.

We kept in touch with the prosecutor, and that really helped us develop our opinion of how the sentencing decision went. The prosecutor, unlike us, was present in the courtroom when the judge announced the verdict, and was able to tell us that the judge was really focused on treating this incident the same way as any other incident of child abuse. The court didn’t really mention anything about Issy’s disability making the woman’s life harder.

TPGA: We often have to counter misleading messages about cases like Issy’s, messages implying or stating outright that abuse (or worse) happens because “parents just need more support” — which was certainly not the situation here. What did the court have to say on this matter?

SC: The judge did acknowledge that Kelli Stapleton was in need of help — for emotional problems, not in terms of needing help caring for Issy. She was having personal difficulties in the time leading up to the attempted murder. But she wasn’t in need of intervention in managing Issy’s behavior — she was in need of intervention in managing her own behavior. And the judge did take that into account, but very fortunately kept the focus off of Issy, and off of this argument that Issy’s disability was somehow the cause of the mother’s act of abuse.

Kelli clearly had a history of responding to stress by lashing out at others, mainly Issy, but she had been making statements about her frustration and clearly terrible relationship with her daughter, for a long time. We don’t take the position that there wasn’t anything that couldn’t have been done. But the intervention that needed to be done was someone noticing that this person was expressing persistent hostility towards her daughter, and noting that maybe that might be a dangerous situation, and intervening.

TPGA: Are there interventions that, in your opinion, might have helped?

SC: What we need is for social workers and other such officials to be able to try and intervene in cases of violence in families, including in ways that are short of removal. It’s possible that social workers weren’t observing anything in the Stapleton case that in itself merited removal, but should have been ringing warning bells. They could have started intervening in less dramatic ways — started by offering counseling to the parents, and respite services, depending on what is available in Michigan. But people needed to be aware that this was an at-risk family because of Kelli's attitude towards Issy.

TPGA: Were there any indications as to how Issy is doing?

SC: Issy was in a coma for days. She has permanent traumatic brain damage. The brain damage very luckily has not affected her communication skills, but she has mobility and coordination problems that are greater than what she had before. And she’s going to have to live the rest of her life knowing that her mother tried to kill her.

We have members of ASAN whom I know personally, whose parents tried to kill them, or who acted extremely violently towards them. Fortunately that’s not an experience I had personally, but being able to hear people talk about what that was like for them is an important part of developing awareness that acts like this have real consequences.

TPGA: Was ASAN satisfied by Kelli’s sentence of 10 to 22 years?

SC: A lot of people were calling for life in prison, and I certainly wouldn’t have objected; I feel like if any act deserves life in prison, attempting to murder your child would be one of those things. The reason we believe Kelli Stapleton’s sentence is a significant penalty, and not a slap on the wrist, is that the sentence is in line with those we would typically see for a similar crime, for other people in that same situation but where disability wasn’t a factor.

It is never acceptable to hold a child’s life hostage in the demand for more services. There are many things that we as a society can do to prevent these kinds of acts of violence. But those things need to be focused on preventing abuse, communicating that every person’s life is valuable, and detecting the warning signs of possible violence ahead of time, and really providing targeted anti-violence services rather than simply giving the parents more support in whatever therapy they want for their child and hoping that that will somehow improve the parent-child relationship. If the parent is so antagonistic toward their child that they’re contemplating violence, then something needs to change and it’s not the child — it’s the parent.

This is really the first time ASAN has been directly involved in the advocacy around a particular prosecution. We’ve been challenging media narratives, we’ve been blogging, we’ve been issuing our own statements — but now we’re really coming into our own. We’re really able to participate in the actual process, and influence the people who are making important decisions about sentencing, about the kinds of services that need to be given, about the kinds of defenses that are acceptable, and about the kinds of defenses that are going to be recognized as straightforwardly anti-disability. We’re really, for the first time, able to have a direct impact on that.

Thursday, October 23, 2014

Dr. Jonine Biesman: Avoiding Crises Through Respectful Parenting

Photo of Dr. Biesman from theAAPN.org
[Image description: Woman w/beige skin,
long curly dark hair, & brown eyes,
smiling widely, directly at the camera.]
Dr. Jonine Biesman specializes in working with neurodiverse children and adolescents, as well as with their parents and larger family system. She is a training leader and interventionist in DIR/Floortime.

We talked with Dr. Biesman about best practices for parents who need help understanding and parenting kids with aggressive or self-injurious behaviors, about presuming competence in children who need communication support, and about the potentially dangerous costs of parent-enforced compliance. Here's what she had to say:

[Best practices] doesn’t just apply to autism. With any child, whatever age, whatever person, who’s having a hard time, the first step really is understanding. What is that behavior really representing, what is it a manifestation of, and what’s really being communicated. As soon as anyone’s needs are better met, then the function of such strong behavior isn’t needed.

I think that if parents are having a hard time understanding what’s behind a behavior, therapeutic help can be valuable — because somebody can sit down with parents, help regulate the parents, and go over reasons why [the child] may be having that reaction. It could be any number of reasons — sometimes people are simply sleep deprived, and prone to being more irritable and on-edge. Sometimes they are feeling very overloaded by the sensory environment. It could be something that’s accumulating, something that’s happening at school, for example a peer conflict or a mismatch between a teacher and the student.

Oftentimes, people will internalize their feelings until they escalate and get more intense. And sometimes children, adolescents, or young adults don’t themselves have a sense of why they’re feeling overwhelmed. And once someone’s angry and out of control, it’s hard for any of us to bring them out of that extreme of an episode. So the best work we can do is on the front end: really trying to read cues, and read signs.

If our children are trying to communicate something, there’s value in stopping and listening, rather than jumping in all the time with “that wasn’t right,” and going to a place of “well that broke a rule, and there needs to be consequences.” Instead, stop and listen, ask “what’s on your mind?” and ask “what can I help you with?” Say “I’m listening and I want to hear what you have to say,” and then just say nothing. Sometimes the fewer words from the parents, the better.

I get that not everyone on the spectrum has access to that kind of language, but whatever kind of communication system is in place, it's important to give the time for the person who's upset to share. A good resource in this area is Dan Siegel’s new book No Drama Discipline. It has a lot of what I think what parents really need, which are hands-on tools. In the back of the book there are 20 things maybe not to do when your child is misbehaving, and alternatives.

I think when you’re working through the relationship, you always want to be thinking about ways you can help. There are ways you can choose your words that won’t escalate a situation further. A lot of people get angrier when consequences are put forth, or when you’re trying to preach versus just explain something in a calm way. And when our children are very agitated or irritated, or aren’t able to access their cognitive capacities to problem solve, we want to be very calm.

We can choose our words carefully, and not overwhelm with too many words. Whenever you have something you want to impart to your child, there’s always a way to say it positively. For example, when a child has a hard time transitioning and shifting, and moving on to the next thing, you can always move into that kind of situation in the role of a helper.

It’s about saying “yes” with conditions, rather than always saying “no.” Framing in a way that is not threatening to a child, finding a way to let them know they’re going to get what they want, but first they might have to do X,Y, and Z -- and then they’ll be able to get back to what’s really important to them.

Crisis situations are tough, especially when a kid is self-injurious or is in the midst of an aggressive episode. You always want to try to understand the function of a behavior; if a child is self-injuring it may be because they are in a great amount of pain, to the point where they feel numb, dissociated, and disconnected, and self-injury makes them actually feel something. There’s always a function. But do we want someone to continue to injure themselves, to bang their head against a wall? No. You can always say, “I want to help you, and a pillow might feel better. If you really need to feel something right now, let’s try this.”

When it comes to something like sibling interactions, or a parent and child dyad, and there is violence in that dyad — you can always start from day one, impressing on your child what your family values are, letting them know “we are not an aggressive family.” They need to know they have other options. Engage the child, have them come up with ideas for some of those other options. Make sure they’re part of that problem-solving process. You can also talk about another value in your family being forgiveness.

And model for your child! We’re always going to have reactions that we regret. We’re going to have times when we’ve overreacted, or didn’t take a moment to listen, or we thought to ourselves afterwards, “wow, I could have handled that better.” We can take those moments, and we can talk about those moments, and we can repair. We can say, “I’m sorry that I used a loud voice, I never want to be scary,” or “I love you guys so much, I don’t want to yell at you guys, that’s not what I want to do.”

Then it’s about having family meetings about how you all want to be interacting with each other. And it’s always OK to go back when you aren’t so heated, and sit down with your kid, and say “You know, I’ve been thinking about this, and I could have done this, and let’s do it this way.” You can go back on ultimatums. Because parents will say irrational things in the heat of the moment. So you have to be aware that a multitude of such things piling up can create harm, can create a break in the relationship. You always have to be working on the parent-child relationship, like any relationship.

You have to nurture relationships. You have to give them time. You have to make sure there are plenty of loving, bonding, connected moments. When you have that as a foundation, there’s more room for mistakes to be made on the child’s part and the parent’s part, and you can get past “transgressions.”

Children with communication challenges often understand more than people think they can, of course. And certainly someone can pick up on a softer tone of voice versus a harsh tone of voice. Human understanding and touch and hugs and rubs on the back — we’re pretty innately wired for reading those cues. I would venture to say that any kid with autism would be able to pick up on some of those subtle human kinds of feelings, and distinguish between something scary and something pleasant.

What’s so amazing about the work that Siegel does, is he asks parents address the ghosts in their own closets first, and understand why they’re making their parenting choices. Because we all have our own histories, and our own exposure to our own parents. Examining that, in terms of the choices that we’re making, is really important. Looking inside ourselves first.

As a developmental interventionist, I’m not a huge fan of the term ‘compliance.’ Realistically, compliance is a necessary part of life in some ways. We need to listen to our parents, we need to be cooperative. But ‘cooperation’ has a very different tone than ‘compliance.’ If we try to force our kids into compliance, it’s almost like we’re trying to make them trained animals, in a zoo. And they’re human beings.

So instead of compliance, why don’t we think about how we can work cooperatively, together, and absolutely listen to not only your child’s cues, and what your child is saying. It’s really important, because sometimes your child is not only giving very strong messages, but is trying very hard to tell their parents what’s going to work for them and what’s not going to work for them -- and ignoring those cues can have some very dire consequences.

You need to listen to your kids, you need to listen to yourself, and you need to ask yourself why compliance is so important to you. Or is there another way to look at the situation, or think about it.

Monday, October 20, 2014

Disability: Considering Insider vs. Outsider Perspectives

Amanda Forest Vivian

This post was originally included in our 2011 Dialogues series. But we think it deserves separate attention, and are republishing it with the author's permission. 


This is just a theory, so be gentle. But I think a lot of problems between non-disabled people and disabled people might have to do with the fact that for most born-disabled people, their disability is ego-syntonic (integrated with their self-image).


Ego-dystonic is an psych term for an aspect of a person that doesn’t fit their self-image. For example, if someone lost their legs in an accident, they would probably wake up the next day and see a body that didn’t seem to them like their real body. On the other hand, if someone is born without legs their disability is usually ego-syntonic, so they feel as attached to their body as anyone else.  They don’t feel the same distress that the first person might.


It’s hard for anyone to put themselves so completely in another person’s shoes that they can relate to not only their day-to-day experiences but what it would be like to be attached to those experiences because they are yours. Also, we don’t live in a society that encourages non-disabled people to understand this.

One symptom of this problem is disability simulations. The conventional disability simulation consists of a person who can walk trying to get around in a wheelchair, or a person who can see wearing a blindfold. These simulations are criticized because they don’t really simulate disability. A person can come away with a feeling like, “It would be horrible to be blind,” because as someone who is used to being sighted, they found blindness to be much more scary, overwhelming, and unnatural than an actual blind person does. An hour-long disability doesn’t resemble a real disability any more than the lack of disability does.

I think you can see the same issue in mainstream fiction, written mostly by non-disabled people, that features disabled characters. Disabled fictional characters often seem to have an acquired disability, a fairly recent one. They remember being non-disabled, and it’s taken as a given that a non-disabled version of them is their “real” self, and they want to be that person again. The most obvious example I can think of is the movie Avatar, in which a guy finds it less ego-dystonic to be a ten-foot-tall blue alien than to be paraplegic.

When I say this is not a realistic portrayal of how most people feel about their disabilities, I’m not trying to claim that being disabled is super fun or that it wouldn’t objectively be easier to be non-disabled (that’s the definition of disability). But I am trying to say that disability feels very different to disabled and non-disabled people.

Obviously many non-disabled people don’t have the same kind of distress reaction to disability that I’m describing, and some disabled people do. But I think it’s a significant enough trend that it amounts to a kind of culture shock.


Many non-disabled people who are having kids have formed not only a personal self-image that is non-disabled, but a family self-image that doesn’t contain any disabled kids. Then if they have a kid who is disabled, they feel that they lost something.

When you think about it, this means the kid is growing up in a situation where they and their parents are having a massively different experience of the kid’s life. To the parent, certain facts about the kid’s life equal a loss, but from the kid’s perspective nothing has been lost and these are just facts.

This difference in perspective can lead to some practical problems. Kids tend to be shortsighted. If a kid really loves sitting around making moaning noises, probably their entire thought process about this is, “I found something fun to do. Awesome.”

A parent by definition is thinking something more complicated. “I’m glad that my kid has such an easy way to get into a good mood. But, no one in our house can even read a book because this is so loud, and I’m also worried that my kid isn’t putting much time into learning to do new things.”

Or the kid is having trouble learning to read, gets stressed, and decides it would be better to watch movies instead. Whereas the parent knows that learning to read is important, and shouldn’t be given up so quickly just because it seems hard.

There has to be this difference in perspective between parents and kids -- whether or not the kid is disabled -- because it’s normal for parents to be pushing their kids to learn and do new things.  Ideally, as the kid grows up they will come closer to the parent’s perspective, and become an adult who’s motivated to not just go for instant gratification but to attempt new and challenging things.


The problem is that when a parent is experiencing a kid’s disability as a loss, the gap between the kid’s and the parent’s perspective can get so huge as to be insurmountable. If a kid’s moaning is heartbreaking to the parent because it’s a sign of disability, and the kid thinks moaning is the coolest thing ever, these are two people who have almost nothing in common.

The kid’s behavior feels like an attack to the parent. Doesn’t the kid understand that learning to read would be a way of moving away from this really bad fact of being disabled, which has caused everyone so much sadness? The parent’s behavior feels like an attack to the kid. If the parent is so personally hurt by the kid trying to do something they love, does that mean they don’t care if the kid is happy?

In this situation, there is a built-in distance and I think the distance can get bigger the closer the parent and child are. If the parent is attentive enough that they know every single thing that is challenging or different about the child’s life, and every one of those things cuts like a knife ... well, I don’t exactly know how to put this into words, but for me it’s like the closer my parents get to the details of my experience, the less me there is, if you know what I mean. They start giving off a sadness that isn’t how I feel, but is so bottomless that it has the effect of terrifying and overwhelming my actual feelings, which are not that existential.

I often feel like the best way to keep my parents on the same page emotionally as I am is to keep things from them. Actually now that I write this down it sounds really stupid and dangerous, but I guess my reasoning process is that I am always a little worried about myself, and if my parents don’t know much about what’s going on, they are a little worried about me too. That keeps us all the same and we can relate to each other. If they found out some of the things I’m worried about, they would be ten times as worried as I am, and maybe this is true of most parents regardless of anyone’s disability status. But it is something I think about when people talk about being their kid’s voice.


When I was a kid, I liked to sneak around my parents’ room and read all their books about kids.  Some of them were about kids in general and some were about kids with autism and learning disabilities. One had a title that I think was supposed to be encouraging: “How Your Child *IS* Smart.” My parents didn’t really like me reading these books so I had to keep it on the down low, but when I was thirteen I discovered a book about Indigo Children. I couldn’t help but ask them why they had it.

My dad looked at me and said really solemnly, “We’ll try anything to help you.”

Soon after, I had an experience that I remember really well. Our dog died, and the next day my parents and I went out to dinner. When we got home and were getting out of the car, I got hit with an almost physical guilt about being an only child. Now that the dog was gone, there were no extra parts in the family unit that could distract my parents from what was wrong with me. It seemed so horrible, just them, me, and the Sadness.

As I got older I started to resent what my dad had said about the Indigo Children book. “We’ll try anything to help” -- what was I, a serial murderer? I was just a kid who people didn’t much like having around. This was most viciously obvious when I was at school, and I was the one who had to be there, not my parents  I felt like if anyone had the right to be desperately concerned about the situation, it was me. But I wasn’t as concerned as they were.

I recently asked my dad why he said that, and it turned out that he doesn’t think I am a serial murderer, but was just try to say something positive. A psychologist had actually advised my dad that this was the right thing to say if I asked why my parents had so many books or why I went to so many doctors. Which is actually where I’m going with whatever section of the post this is.

It might seem like saying “we’ll do anything to help you” or “we tried everything” would make a kid feel like you really adore them, but this can actually make someone feel horrible. If you’ve always been disabled, disability doesn’t really feel like an emergency, nor does it really feel separable from who you are. So it can just feel like, if someone would be desperate enough to try everything you must be sort of a disaster as a human.


I really love this interview with Norman Kunc, an advocate who has cerebral palsy: www.normemma.com/articles/arstairs.htm  He’s thirty years older than me, but when he talks about how his childhood made him “declare war on his own body,” that couldn’t be more familiar. I don’t have a mobility disability, but autism can also live pretty unmistakably in the body, which is why I used to only want to meet people when I was sitting down.

Kunc came to this big realization when he was in university: “I had the right to be disabled.” This line has stuck in my head, both because I find it incredibly moving and because I know that a lot of people would find it about as bizarre as saying, “I have the right to have a headache.” Wow, great, a headache! Where can I sign up?

But I already am disabled, so it is a right I want. If I don’t have the right to be disabled, it means I have to function like I’m not disabled which I can’t do. Or I have to try to function like I’m not disabled to the greatest extent of my powers, but that isn’t what I want to put all my life force into. I want to be disabled because then I can have a real life.

I feel really nervous when I hear that a kid with autism has “lost the diagnosis” because they stopped having stereotypical traits of autism that people could see. Because to me it means that the kid has done and is continuing to do all this work, but they’ve lost the word that would explain that they’re doing a lot of work. Instead they’re just a normal kid who is really tired and sometimes has to keep this secret stash of movement and feeling because it doesn’t fit the person they’re supposed to be.


To get back to the culture shock I was talking about, I think that some non-disabled people don’t understand disabled people having these kinds of feelings, because it’s hard to understand that disability is sort of in us, and not just something that happens. Which to make my way back around to my point is why someone might think it is comforting to tell a disabled kid, “We’ll try anything to help you,” but actually make the kid feel like some kind of natural disaster.

It also explains why some other “nice things to say to a disabled person” get lost in translation -- for example, “No, you’re so smart!” if a disabled person describes a problem, or the classic, “You’re not really disabled, you just have trouble with [area of impairment].” Or when I say I’m disabled and the person says, “Aww! Don’t put yourself down!”

My idea isn’t to chew out people who use these phrases because I know it is meant nicely on their end, but I wish they would stop. I want to be disabled, or at least, since I am disabled, I want to be.


Because disability seems so familiar and, well, basically, good to me, sometimes I don’t feel comfortable with efforts to get rid of disabilities. I don’t want to say I am anti-cure, but I wouldn’t want to live there. I know a lot of awesome people with disabilities, and if they didn’t have disabilities their life experiences and personalities would be different. They might still be an awesome person, but not the same particular one.

I don’t suppose a cured kid would be upset about being different from how they would have been, because that version of them never existed. It’s just as biased for me to want some people to have disabilities as it is to think that no one should have disabilities. I don’t think that it is perverse for me to feel the way I do, though, but I know some non-disabled people think it is perverse.


Do you think it’s just an interesting exercise, or might some of these ideas begin to explain a problem you’ve had with someone of a different disability status?

Tuesday, October 14, 2014

DIR/Floortime: From Research to Practice

We were recently invited to attend the Floortime Coalition of California's Fourth Annual DIR/Floortime® Conference: From Research to Practice, in Lafayette, California, and thought our community members might be interested in what the conference speakers had to say. (We are sharing rather than endorsing DIR-specific information.)

For those unfamiliar with The DIR® Model, or Developmental, Individual-Differences, Relationship-based Model: it is "an interdisciplinary framework for assessment and intervention developed by Drs. Stanley Greenspan and Serena Wieder. It is used to guide parents and professionals in designing a program tailored to each child’s unique strengths and challenges and support developmental progress."

We live-tweeted most of the conference speakers' talks, and collated those tweets into Storify posts for easier reading. We've pulled out a quote from each speaker to give a sense of their presentation. There is so much potentially useful information in these talks about rethinking parents' roles, parent/child & therapist/client relationships, professional approaches, respecting autistic ways of being -- we very much recommend clicking through and reading all five posts. 

"DIR general features: Always a sense of warmth, security, trust, a safe place for kids to explore & engage."
"Parents can be terrified, told they won’t connect with their #autistic child. Floortime can bust that myth." 
"If baby cannot handle talk AND touch AND gaze all at once, parents need to try to be sensitive to that."
"In the parent-child dynamic, you need to find strengths & follow through. There are always strengths."
"Autistic adults often express relief at being diagnosed with #autism, esp. after years of being misunderstood."

Monday, September 22, 2014

An Open Letter to Radiolab: Stop Your Dangerous Autism Reporting

Dear Robert Krulwich, Jad Abumrad, and the Radiolab team:

Your autism-focused episode Juicervose has destroyed my faith in Radiolab and the integrity of its reporting. Rubbernecking about autism and autistic people is usually the realm of inexperienced journalists, but you don’t have that excuse. In fact, you have a MacArthur "genius grant" recipient on your team specifically because of your focus on "bringing new ideas to people." So why did you choose to amplify the same hurtful, tired autism stories the media always airs? And why didn't you show more compassion for autistic people themselves?

Sure, you talked to Temple Grandin. With respect to both her and your team, every person on the planet has heard what Temple Grandin has to say about autism. Her ideas are not new ideas. And yes, you talked to Owen Suskind. It was wonderful to hear his voice and his perspectives. I am sincerely glad he is doing well.

But you used Ms. Grandin and and Mr. Suskind not just as examples of autistic success, but of unrealistic autistic success. Harmful unrealistic success. The kind that, according to Radiolab’s narrative, drives parents like Issy Stapleton’s mother to kill their non-Temple Grandin, non-Owen Suskind autistic kids — kids like my own autistic son, Leo. Kids for whom your story demonstrated little to no sympathy.

You need to know that such tiresomely biased storytelling robs autistic people like Issy Stapleton not only of their victim status but of of their humanity. It turns autistic people — already the target of sloppy media prejudice — into villains. It perpetuates the dangerous and dangerously contagious notion that it is “understandable” for parents to murder their autistic children, if those children cause too much caregiver stress. You told your fiercely loyal and trusting audience, directly, that “unsuccessful” autistic peoples’ lives are of lesser value.

Your participation in such irresponsible reporting needs to stop. I say this as the parent of a high-support autistic son, and as a parent who absolutely understands caregiver stress. I just don’t write about that stress much because Leo does not deserve to have his most vulnerable moments made public, does not deserve for people who neither love nor understand him to cluck their tongues in pity, or use him as an example of how awful parenting an autistic child can be.

My son Leo. Whom I adore.
[Image Description: Beige-skinned teen
boy with short curly brown hair,
wearing a red t-shirt, in front of an
olive green background,
in 3/4 profile.]
My son is not awful. He’s amazing. He’s sweet, thoughtful, silly, and generous. But thanks to your lazy, stigmatizing, one-sided accounts of high-support autistic people like him and Issy Stapleton, your legions of listeners are now unlikely to ever consider those positive aspects of his personhood.

So, please, I am begging you. Please change your approach to reporting about autism and autistic people:
  • Please ask your readers to consider the reasons why autistic people might behave aggressively:  Is there undiagnosed illness or injury, or are communication tools insufficient? Helping people think differently about autism and aggression will help both autistic people and their parents.
  • Please get out the word that it is not just acceptable but necessary for overwhelmed parents to ask for help. If a child is in a position where they are constantly injuring themselves and their parent, everyone is at risk, and it may be that the best place for that child is outside the home (though, again, parents need to investigate reasons for aggression first and foremost). Protecting and providing for a child by finding them the skilled care they deserve is not a parenting failure, yet options and solutions that benefit both child and family are rarely reported.
  • Please stop portraying autism acceptance advocates as delusional optimists bent on “AUsomeness.” It is reasonable for autistic people of all abilities to have their needs both understood and met. It is reasonable for parents to love their high support autistic children fiercely and without expecting them to be “recovered.”
  • Please stop characterizing autistic people as “lost” or “locked away,” and autism causation as some sort of frightening mystery. Autistic people have always been here; we are just getting better at re-categorizing, detecting, and diagnosing them.
  • Please back up your throwaway mention of Neurodiversity by including the perspectives of  autistic people of all ages and abilities. They are not hard to find. Excellent candidates include Emma Zurcher-Long, Amy Sequenzia, Julia BascomZoe Gross, The Autistic Self-Advocacy Network, or John Elder Robison.
And please, try not to let your curiosity get in the way of recognizing the humanity of the people at the very center of your storytelling. Please tell another story about autism and autistic people, and tell it better.


Shannon Des Roches Rosa
Senior Editor
Thinking Person's Guide to Autism

Monday, August 11, 2014

A Critical Response to "The Kids Who Beat Autism"

Steven Kapp, PhD

I critically lectured on autism and “outcomes” like "recovery" for my UCLA Autism and Neurodiversity class the day the New York Times article The Kids Who Beat Autism came out, then saw a related statement I wrote* for the Autistic Self Advocacy Network shared widely later that same day -- so I mulled over how much more attention to give the NYT story. 

I finally decided to write an updated response for my students, focusing on the cited research, including Catherine Lord's critiques of Deborah Fein, my critiques of Lord, and my critiques of the new article. I otherwise sat on the response for days but decided to share it on Facebook as a status update and then, with my friend Amy Sequenzia’s encouragement, as a public Note. Now, following several TPGA editrixes’ well-deserved vacations, I am honored to give the response wider exposure through my first publication on TPGA.


The New York Times Magazine article The Kids Who Beat Autism abandons pretenses of objective journalism in its headlining confidence that some autistic children “beat” autism. It makes such proclamations despite admissions that the two separate research studies led by Deborah Fein and Catherine Lord that form the basis of this article do not determine what the apparent behavioral change means and that no one knows how to predict “outcomes” of autistic individuals. It also has a biased concept of autism. It discounts the possibility that strengths of individuals who supposedly “beat” autism, such as in robotics and computer programming, may be related to autism. It discounts that continued, if not additional, disabilities in such individuals, such as ADHD and social anxiety are often associated with autism and may be related to how their autism manifests at this stage in their lives.

All families interviewed participated through the Fein article, which was designed for widespread media exposure, with many problems related to its convenience sample (noted by Lord in a commentary for the Simons Foundation). The researchers recruited through media outlets (e.g., newspapers and radio interviews) and clinical reports of children “known” to have “optimal outcomes.” The study did not require rigorous or uniform early diagnosis, and we know community practices vary greatly in type and quality; maybe the children were misdiagnosed (e.g., simply had a developmental delay). The clinicians making assessments knew into which category participants were classified, and parents’ report of their child’s behavior from many years earlier is subject to biases. That study of course further reveals its biases in labeling autistic children who apparently blend in as “optimal outcomes.” Thus the publicity from this later article puts further pressure on youth to keep up an act that may drain energy and cognitive resources that could go toward better use as coping skills, and as Lord notes, autistics may be particularly susceptible to the pressure of “getting to perfect.”

Individuals paraded as “optimal outcomes” demonstrate the dangers of pursuing normalization even within an article that spins and sensationalizes “beating” autism. One such individual admits that suppressing his harmless, natural expression of “excitement” through hand-flapping was “frustrating” for years -- “It was like smiling and then someone telling you that you shouldn’t smile, that smiling was wrong. Remembering to put my hands in my pockets made me less excited because I had to think about it so much.” Is his learned “habit” of suppressing the “urge” (his words) to flap -- this pathologization of unguarded happiness -- “optimal”? Another former participant from the flawed Fein study reveals his internalized ableism in denying that he flaps his hands when, again, feeling genuine excitement. That he only expresses his excitement in this way when by himself reveals denial and shame that may result from a lifetime of having his natural ways of being ingrained in him as wrong. The declaration of such “outcomes” as “optimal” encourages misguided values that lead families to take extreme measures at great emotional and financial costs, with all too many examples of such in the article.

The article led by Lord, meanwhile, had stronger methodology and she is more careful with discussing the results and the implications of this area of research in both the article and the media, but it is not without problems. That study followed up on children diagnosed at age two by her research team, so the longitudinal research by the main author of the autism field’s most recommended diagnostic instruments offers a more systematic approach. Eight participants no longer seemed to meet diagnostic criteria for ASD by age 19 even though six of them met criteria at the previous assessment at age nine and another had other diagnoses. Lord has noted as part of her work on revising the diagnosis of autism in the DSM-5 that the criteria work best for young children (five-to-eight-year-old white boys). She also agreed in the article and in personal communication (November 2, 2012 at luncheon for UCLA’s Center for Autism Research and Treatment, or CART, lecture on developmental pathways in autism) that these young adults she describes as “very positive outcomes” may struggle more and exhibit more apparent ASD later, for example after graduating from college, an institution that provides structure and allows students to tailor programs to their interests. I noted that an autism specialist had offered to remove my ASD diagnosis when I was an undergraduate, but with the increased demands and less supportive environment of graduate school, I have become more stressed and my autism has become more obvious. The support that I continue to receive related to my autism diagnosis has been invaluable to my personal and career growth.

Autistic people, and our families, deserve better than this irresponsible, appalling article. The struggles of print media and various unchecked opinions regarding autism do not justify accounts of autism that perpetuate problems like quiet hands and warrior parenting. We should aim to help equip autistic people with practical coping skills that build on their strengths and mitigate, compensate for, or accommodate challenges -- from a place of acceptance rather than stigma, fear, and desperation.

*Ari Ne'eman wrote the most popularly shared part, the paragraph without citations.

Saturday, July 12, 2014

Busting Anti-Vaccine Myths While Supporting Autistic People

Shannon Des Roches Rosa

Yesterday I was given the opportunity to head a "Let's Talk About Autism" discussion for the excellent organization Voices for Vaccines, in order to help vaccine advocates understand how anti-vaccine information can be hurtful to the autistic community, and with the hope that better understanding about autism as part of pro-vaccine messaging will help spread acceptance of autistic people like my son Leo.

If you missed the discussion, which was followed by a Q&A, one option is to listen to the Voices for Vaccines "Let's Talk About Autism" recording. Another is to read the simultaneous conversation on Twitter, which Liz Ditz kindly Storified. Or you could read the below version of the talk I gave, though the live version include some improvisation. This transcript also does not include the Q&A session, though its highlights are covered in Liz's Storify post.


I’ve been writing about autism at www.Squidalicious.com since 2003, when my son Leo was first diagnosed as autistic. I’m also a founding editor at Thinking Person's Guide to Autism, where we have a very active Facebook community, and a BlogHer contributing editor for parenting kids with special needs. I’ve also written for and worked with a lot of pro-vaccine organizations — Bill and Melinda Gates Foundation, Shot of Prevention, the UN Foundation’ Shot@Life. I even stormed Capital Hill with a bunch of fellow vaccine advocates this past March, to meet with congressional staff on behalf of global vaccine campaigns. SO I’m 100% invested in autism advocacy and vaccine advocacy.

Image description: Selfie of a woman with beige skin,
shortish red hair, wearing reddish-brown lipstick, standing
in front of a black placard with gold lettering that reads
"SENATOR Dianne Feinstein -- California."
But before I get into the standard vaccine-autism myth busting, I want to talk about a critical aspect of vaccine advocacy, which is understanding how vaccine-autism misinformation hurts the amazing people in the autistic communities in general, and people like my wonderful, happy, autistic son specifically. (Recommended reading includes my HuffPo article 10 Things I Wish You Knew About Autism.) If more people understand that autism and autistic people are part of human diversity and nothing to be afraid of -- if we get more messages out there about accepting people like Leo, who need significant support but also have unrecognized abilities and have always been part of our society -- and who, frankly are offended when asked if they think vaccines cause autism not just because the science doesn't support the link but because it dismisses their humanity -- then that's one more reason not to listen to anti-vaccine misinformation.

Image description: Dual selfie of a woman with
beige skin and shortish red hair, and a young
man with curly short brown hair, against a
background of green bushes and large white flowers.
I really want those of us who are not autistic to to remember that autistic people take part in these conversations, read what we write, and — if we are invested in the concept of presuming competence, as we all should be — hear everything we say in their presence. Autistic people are part of our community. Autistic people are not “them.” Autistic people are a part of “us.”

The neurodiverse TPGA editorial team
Image description, left to right (all folks are smiling):
A woman with beige skin and short platinum hair wearing glasses,
A woman with beige skin and short brown hair wearing drop earrings,
A woman with beigh skin and short red hear, wearing brown lipstick,
A woman with beige skin and shoulder-length blonde hair
wearing a gold and black segmented necklace.
So I want to ask you to be careful about how you make your pro-vaccine arguments when autism is involved — because when we use our many many mountains of evidence in statements such as “there is NO evidence linking vaccines to autism” without adding the statement “and fear of autism hurts autistic people,” then we’re actually contributing to negative stereotypes about autism and autistic people, rather than furthering autistic people’s acceptance and inclusion in our society. 

Another reason autism understanding is so important to our work as vaccine advocates has to do with who we want to reach, such as the new parents who are minted every minute — and who are certainly not always in a rational space, as any overwhelmed and sleep deprived person who has parented an infant can assure you. If we can incorporate reality-based messages of autism understanding and acceptance into our advocacy, make them commonplace, then those new parents, too, will ideally have one less irrational fear fueling their vaccine choices for their kids.

Where do we get this information, about understanding, accepting, and respecting autistic people? I think the best resources are autistic people themselves, through organizations like the Autistic Self-Advocacy Network, and Autism Women’s Network. From autistic bloggers like Ido in Autismland, Invisible Strings, Chavisory’s Notebook, and Lynne Soraya — and the group blog We Are Like Your Child. Thinking Person’s Guide to Autism is a nexus for autistic people, parents, & professionals. And then there are parent blogs like mine, Squidalicious (well, I try) and parent blogs that now are joint efforts between parents and their autistic children, like Day Sixty-Seven and Emma’s Hope Book. I’ve gathered up some of these resources on Pinterest, at shannonrosaFTW, and hope you'll read them and find them helpful.

I certainly find these resources invaluable; they have been critical in helping me not just understand but appreciate my son, and move from being one of those credulous “autism warrior” cure-seeking parents to an autism parenting advocate.

And I certainly wasn’t always a pro-vaccine advocate. In fact, after my son Leo was diagnosed with autism, I became staunchly anti-vaccine and stopped vaccinating him. When his younger sister was born in 2004, she received no vaccines. At all. Because I was afraid of autism.

When parents like me fear autism in addition to fearing vaccines, they often retreat even further into denial. It may not even matter if, intellectually, they know better. I used to live in Ghana, West Africa, and I knew university classmates there who were disabled by polio — unlike so many of my American peers, I actually knew what vaccine preventable disease looked like, what it could do. But when my son was diagnosed with autism in 2003, I still went down the rabbit hole of vaccine denialism in order to keep him and his baby sister "safe." Because my classmates with polio? They were still attending college. Whereas the media in 2004 -- even more than the media in 2014 --  portrayed autism as not only likely caused by vaccines, but as the Worst Possible Thing That Could Happen. Those cultural messages of fear and doubt scared the hell out of me, and they sounded like reasonable science at the time. There was no way in hell I was putting my kids at risk.

And that is the message I really want to reiterate across today: I was afraid of autism because I didn’t know any better. I didn’t know any autistic people. I came from outside the disability community, I did not have trusted, vetted sources like Thinking Person’s Guide to Autism or Voices for Vaccines for autism and vaccine information, and I believed what the media told me about autism. Including at the time, that there was a link between vaccines and autism.

It is my hope that, by helping spread understanding about autism, we can erode that fear. That if we treat autistic people like my son with the respect they deserve and do our best to understand that my son lives a full, happy life and is no one’s injury example or cautionary tale, if we help our society realize that autistic people have always been part of society, that autism is a neurological difference, not a disease, that we’ll not only have more acceptance of autism in our society — and as a side effect greater vaccination uptake, and improved public health.

You’re probably wondering what changed my mind, why I am now a vaccine advocate as well as an autism parenting advocate. And I will tell you what people who study denialism and confirmation bias and social networking will tell you — I changed my denialist, hurtful views because of slow and steady exposure to information from trusted resources — and especially from trusted people. It became increasingly difficult for me to rail against vaccines and against autism when the people and resources I most respected were constantly posting information that caused me to question my fear-based opinions on vaccines and autism. And by the time I started writing for BlogHer in early 2009, one of my first posts was My Child Has Autism and I Vaccinate.

Today, five years later, we’re finally seeing daily articles reminding people that there is no link between vaccines and autism. Unfortunately, we’re also seeing outbreaks of vaccine-preventable diseases like measles, which, sadly, are also extremely effective in sending parents scurrying to vaccination clinics. I’d rather people embraced vaccines because they understand why public health and herd immunity are so important and why autism fears are both hurtful and baseless. So when you go out in your community with the goal of being that trusted person who can be relied on for solid information about autism and vaccines, here’s what you need to know, and share:

  1. The Andrew Wakefield-led paper that claimed to discover a link between the MMR vaccine and autism was a lawyer-funded hoax. When the hoax was exposed -- and it was revealed that Wakefield conducted unethical and unnecessary medical tests like lumbar punctures on the kids, falsified the kids’ records to suit his predetermined findings, and had filed a patent for a separate measles vaccine -- the paper was retracted, and Wakefield lost his UK medical license.
  2. Wakefield’s fraudulent study involved only twelve kids. Since then, studies involving millions of children have failed to find a link between vaccines and autism.
  3. Autism is something a child is born with. It is not a post-natal injury; it is not acquired. Autism families are frequently multi-generational, and autistic children often have family members who are "BAPpy," meaning they fit the Broad Autism Phenotype description -- some autistic traits, but not enough for a diagnosis.
  4. There is no autism epidemic. Anyone who tells you differently is using fear to get your attention or your donation. Current evidence points to autism as being underdiagnosed. Autism numbers are increasing because we're getting better at diagnosing and are more aware of the autistic people who have always been here.
  5. Autistic traits tend to emerge around the time children get their toddler vaccines. This may make parents think vaccines caused their child’s autism, but it’s a coincidence, and studies have shown that parents who think their kids regressed after vaccines were mistaken about the timing of vaccines and autistic traits’ emergence, and also often missed early signs of autism that were in place well before toddler vaccines were given.

Some people understand that autism is not something to be scared of, understand that people like my son are just as wildly human as anyone (even though autistic people generally need more support and understanding to function in a world and society that is unfriendly to their needs). But those same people may still have lingering concerns about vaccines themselves. Because maybe they got chickenpox as a kid and have pictures of themselves and their siblings covered in red welts and mugging for the camera, so they think vaccine-preventable diseases really aren't that dangerous. Or maybe they believe that our bodies’ natural immunity is all a kid needs to fight disease. These are terrifying positions, frankly:

  1. Before vaccines, when kids had no choice but to rely on natural immunity, hundreds of thousands of those kids got sick, and many of them died. Yes, some people survived unscathed, but thousands and thousands didn’t. 
  2. Vaccine refusal is a privilege of the vaccinated. Only someone who had never lived through vaccine-preventable disease outbreaks could dismiss vaccines as “dangerous” rather than near-miraculous. In countries where access to vaccines is limited, vaccine preventable-diseases are so rampant that some parents will not hold naming ceremonies until after their babies are vaccinated.
  3. Vaccine-preventable diseases are just a plane ride away. And what do you think is going to happen to an unvaccinated child if they are exposed to a disease they have no “natural” protection against? As is happening more often, now that anti-vaccine “concerns” have led to lower vaccination rates?
  4. When fewer people get vaccinated, herd immunity — the concept that when enough people in a community are vaccinated, diseases can’t find a purchase — is at risk. That means babies too young to be vaccinated are at risk when other people don’t vaccinate, as is anyone who can’t vaccinate or for whom vaccines don’t work. And, conversely, when enough eligible people get vaccinated for diseases like chicken pox, the rate of infection among those who can’t be immunized drops.

Vaccines work. They save lives. They save autistic peoples’ lives, too.

You might sense my frustration over Americans getting to bicker about whether or not to vaccinate their children, when in other parts of the world children who don’t have access to vaccines are still dying from preventable disease — one child death every 20 seconds, in fact. But even here in the United States, unvaccinated kids, and infants too young to be vaccinated are at risk from current measles and pertussis outbreaks.

And Sadly, these outbreaks are a direct result of autism-focused anti-vaccine fear mongering by people like Jenny McCarthy. She might deny responsibility, but the statistics don’t lie — measles was considered eliminated from the United States in 2000, but as of last week the CDC reported more than 500 confirmed cases of measles in 2014 alone. Ms. Carthy's and Andrew Wakefield’s efforts to demolish public confidence in vaccines, using the fear of autism as their battering ram, have jeopardized public health, and set the stage for, the very real illnesses of very real children.

But the great thing about vaccine-preventable disease is that it truly is preventable. And we can return to those days of eliminated measles and rare pertussis if we tool our outreach efforts properly.

Most parents who express concerns about vaccines and autism just need their questions answered, and are easy to reach. If they weren’t, the US rates for the majority of childhood vaccinations wouldn’t be holding at an average of 90 percent. Even so, many parents who need good vaccine and autism information are not necessarily going to participate in discussions like this. New parents may not even know how to find what they need to know, and hard-line vaccine denialists (who are tiny part of the autism parent community, despite their zealous online & political efforts) will just scoff. So what we can do, what we need to do, to is get as much good friend-of-friend-of-friend networked, trusted information out there as we can. We need to aim for herd immunity not just with vaccines themselves, but with vaccine and autism information.

It really doesn’t help to tell scared people that they’re misinformed or wrong about vaccines and autism — negative and confrontational approaches usually make people defensively angry and incapable of listening, and can even cause them to dig deeper into denialism. We need to do our best to spread positive, or at least matter-of-fact messages about autism and vaccines, so that people will listen to us. I always appreciated Dr. Paul Offit’s approach, which, paraphrased, is to say that it’s always okay to ask questions — and fortunately, those questions can be answered.


Note: Some of the numbered talking points above were modified for my guest post on My Mamihood, Autism and Vaccines.