Wednesday, June 29, 2016

Dear Young Autistic Person: Why We're Angry

Maxfield Sparrow

a young person with hands on the sides of their head and screaming in anger
[Image: Young white boy with an open-mouthed,
yelling expression, and hands over his ears.]
Dear Young Autistic,

I am like you. I am Autistic. Now I am a middle-aged Autistic (I’m probably older than your parents) but I was once a young Autistic like you are now.

One of my biggest struggles was (and is) with anger. People have commented many times over the years about my anger. You might be angry, too? People around you might talk about your anger to you or to each other where you can hear them. Or maybe people don’t talk much about your anger because you’ve got ways to push it down and hide it from everyone. If you think you aren’t angry at all, check to make sure you didn’t hide it so well you can’t see it yourself.

Why was I an angry young Autistic? I felt stuck in a world I never chose and couldn’t understand. There were many things in life that were easy for me to excel at -- often things others found difficult, like playing the piano, solving logic puzzles, quickly memorizing long poems and plays, learning foreign languages. But everything in life that required me to work and play with other people was out of my reach.

I was angry because people would see how hard it was for me to try to fit into the world of people and they would laugh at me, call me names, tease me, exclude me, even hit and hurt me sometimes. I learned early that everyone talks to kids about how important being good at academics is and almost no one talks to kids about how important understanding humans is. But it turns out that understanding people is more important for success in the world of people than understanding academic subjects is.

I was angry because the world was so frustrating and exhausting. I was stressed out, worn out, burnt out, cast out.

My anger got me in a lot of trouble. My math teacher called me "argumentative." My English teacher called me "overly reactive." My parents said I was bringing trouble on myself by showing my anger, because as soon as the other kids saw that they could make me mad, they had won. “Won what?” I wondered. Was it really a game to the other kids? Some kind of contest? What sort of cruel game is it to single out a classmate who is struggling and suffering and burden them with taunts and blows? Who “won” when I retaliated in anger and ended up being the only one punished for an experience that was designed from the beginning to punish me in every way possible?

I want you to know that I understand. The world is completely unfair and there is so much that is genuinely worth getting angry about. I know you have been worn down by your anger and by the world’s reactions to it, but I want you to know that you should never feel ashamed of your anger or lesser for having a hard time controlling it. It is logical to be angry when you are stuck in a confusing, often violent world, tormented every day, forced to waste so much of your energy trying to hide your very understandable anger, punished for things you can’t help.

I also want you to hold on to hope. I am decades older than you and I am still angry. I am very, very angry. Sometimes the only word for it is furious. But: I also get better and better all the time at channeling that anger into producing things -- writing, art, dance, music -- that I value, and that others (usually) do not want to harm me or shame me for producing.

We are Autistic and that means that we have our own ways of growing and changing over time. You will learn to cope. You will learn to manage your intense feelings more and more every day. It will never be perfect; we will never be Mr. Spock. But it gets better; it gets easier.

When I was young, I bit people. The last time I remember biting someone, I was 14. I would still bite someone now if they were attacking me and I needed to save my life or someone else’s, but I haven’t bitten anyone in anger in 35 years. That’s a victory. I used to hit people with hard things and I stopped that, too. I no longer hit, bite, scratch, or kick out of anger, though I would do all these things and more if I were being physically attacked. That is what I have been able to control: responding with physical violence to those who tease and torment me.

Yes, I still get teased and tormented as an adult. But now I am (usually) able to walk away from that person and have nothing to do with them. I know school can be hard. Hang in there! It seems like it will be forever, but soon there will come a day when you get to make more of your own choices. Soon you will get more choice about who you spend time around. Soon you will be allowed to avoid so many of the people, places, things, and words that make you so angry right now.

In the meantime, don’t let bullies and anger distract you from academics. Learn everything you can. Specialize in knowing about the things you love. Your knowledge and the use you put it to will be what lifts you out of the places you feel stuck in now. Learn breathing techniques. Consider studying meditation. Find a strength inside yourself, even if you think it isn’t there. It is. And while emotions rage through you like seaside storms right now, trust that you can and will find calmer seas as you age.

With autism, we get a great gift. Those kids around you will grow and change but somewhere in their mid-twenties they will hit a point where changes are slow and small. They may seem ahead of the game right now because they had all kinds of emotional growth spurts early in life while you were still working on getting your bearings. But we Autistics grow and develop throughout our lifespan. No, you won’t see much in the scientific literature about that, but I know lots of Autistics my age and older and I feel very confident in telling you that you will continue to change and grow in your thirties, forties, fifties, sixties, and beyond -- as long as you live. Take a moment to think about how marvelous that is, what a treat, what a privilege.

You will find it easier and easier to remain calm, saving your anger for those times when you need its emotional jetfuel and not wasting it on automatically reacting to jerks. Those jerks will be running the same tired emotional-social-developmental treadmill for the rest of their lives while you will be ever reaching toward new adventures. Don’t be ashamed when they make you angry. If not now, one day soon you will come to pity them.


This article was previously published at

Thursday, June 23, 2016

How Lack of Accommodations Can Thwart Anxiety and Mental Health Services

Maxfield Sparrow

[image: The comics character Charlie Brown, sitting up in bed
with his head in his hands, under a speech bubble reading,
"My anxieties have anxieties."]
I wasn’t sure if I would write about this or not. I have shared many deeply personal and private things with my readers, but this is hard and humiliating and I’m not even sure why this is harder to share, but it is. So please be gentle.

I have anxiety so bad and have had it for so long that I didn’t even realize how anxious my baseline state is until the first time I smoked marijuana and experienced what it’s like to feel peaceful. My anxiety makes every day a struggle. Even my good days are riddled with anxiety. As I said, it is my baseline state.

I should add that therapy makes me more anxious. Every so often I struggle so much that I think about trying therapy again, despite knowing how hard it is on me. I get hopeful and decide to gamble on the off chance that this will be the time that I finally find a therapist who gets me and has the tools and training to make a difference in my life.

This morning was one of those times.

I saw a notice for a table at a local library branch. For two hours, a local “behavioral health” (that phrase is so creepy) organization would have a table available for people, “to learn more or to get information about ALL services [agency] offers.”

That sounded promising, so I went.

The entrance to the library was a sensory nightmare. I had to get past a food box hand-out at the door. I am glad someone was feeding people, but it made for a confusing sensory nightmare plus a big audience of strangers watching me trying to get information about a sensitive topic.

Inside, I struggled to make visual sense of the room. There was a table with a person at it, but no sign identifying who they were or why they were there. It used up just about my last drop of processing to get to the table.

So there I was, fidgeting, rocking, avoiding eye contact, having a really hard time of it and pretty sure it showed. “Is this the [agency] table?”

“Yes.” And they waited for me to say more.

“It said you would have information about your services?”

“What service do you need?”

Now … some of you are Autistic and some of you are parents to Autistics (and some of you are both). So you know what I’m about to say.

I couldn’t make the words. And even if I could, I was not comfortable telling my troubles to a stranger in a very public setting.

I see now, at least somewhat, what they meant and what I was supposed to say, but in the moment, it was too much.

I said, “What do you have?”

They rattled off a string of words faster than I could process them all -- who knows? There might have been a better fit in there for me, but I managed to latch on to “mental health services.”

“Those. Mental health.”

They picked up a pamphlet, “you can call this number, and…”

I don’t do phone,” I blurted. This should really be an expected response from someone with anxiety issues, right?

“Is there just a pamphlet I could read or something?” By now, I was hitting the end of my “spoons.”

They tried to hand me the same pamphlet. I looked at it. It was for alcoholics and addicts.

“I’m not an alcoholic,” I said, feeling lost and helpless and pretty certain the wizard had nothing in his black bag for me.

“Yes, but this phone number...”

I was sunk. It was back to the phone call. If I could have made a phone call, I would have done it already, not come to a table hoping to get information and answers about how [agency] might help me.

“Thank you,” and I took off out the door, double time, to go sit in my van where I shook and cried, getting myself together enough to drive away.

What was the point of putting someone on that table who didn’t know how to talk to anxious people and didn’t know how to educate a mental health care consumer about their options without being stressful and triggering?

How many anxious people are not getting helped because access to services is blocked by the lack of accommodation for the very issue that brings them seeking services in the first place?

I’m back to business as usual: coping with anxiety by hiding, leaving places, shaking and trembling, stimming, chewing on things, running away, having panic attacks, and smoking marijuana whenever I can afford it and get away with it. (Please bring medical marijuana to all fifty states! Better yet, bring medical marijuana and recreational marijuana so those who don’t have the money or coping skills to go through the medical system can still have safe, legal access to a medicine they know helps them.)

There is something really wrong when helping agencies become access barriers to the people who most need their services.

I tell myself it’s just as well: any agency that can’t even advise me without sending me into a panic is not going to be able to help me anyway. And therapy that is not helpful to me is often actively harmful to me.

But getting help with my anxiety was still a nice dream while it lasted.

My point here? If you are in a position to help or serve a vulnerable population, do your homework. Destroy the barriers your potential clients face in seeking your help. Be sensitive to the needs of your target population, and don’t leave them high and dry because they are too anxious to make the right words, and too put off by your continuing to offer things they’ve already made clear that they can’t access.

That’s all. Vulnerable populations trip over our own feet enough as it is. We don’t need to trip over yours, too.


A version of this essay was previously published at Unstrange Mind.

Sunday, June 19, 2016

The Faith Community and Social Justice: How to Prioritize Disability, Low Income, and LGBT Needs

Kris Guin

Welcome (at St. Mary's Episcopal Church)
Source: Mel Green/Flickr
[image: Church wall hanging: rectangular quilt reading
"Welcome" in blue letters, surrounded by red hearts
in white diamonds, on a swirly rainbow background.]
I think that communities and people of faith should make social justice work a priority. Not only do I think that people of faith have a moral imperative to make the world a better place, but I think it’s good for the faith community. I don’t know how non-Christian faith communities are, but I think the Church and church* are inaccessible to many folks.

Dressing up in nice clothes is a social standard in many churches because of the belief that you need to “dress up for God.” This prevents many people from being able to go to church on Sundays because some people might not be able to afford nice clothes, or some people might have sensory issues with nice clothes like suits and dresses. If a church is not accepting of queer and trans people, they might not feel comfortable wearing a dress or a suit if those clothes don’t correspond to their gender identity. Casual clothes are simply much more accessible.

Another thing churches should consider is transportation to their churches. There are a lot of people who don’t drive because of things like poverty, disability, and age (people younger than 16/17 and senior citizens). I think churches should work with their local community’s public transportation department and explore ways to improve public transportation access to their church. This helps more people go to their church, and it improves public transportation in their city which helps everyone.

A lot of churches have food banks, and I think that’s a good thing. However, something I wish the Church would engage more in is systems change advocacy to change the system that necessitates having that food bank. I think churches need to contact their local and federal policy makers to make things like SNAP (A.K.A. “food stamps”) more accessible to people. When someone is hungry, they often don’t have the energy to go to church, even if they want to go to church.

I think faith communities should advocate for wage equality, including getting rid of Section 14(c) of the “Fair” Labor Standards Act, and raising the minimum wage. Too many people have to work more than 40 hours per week to just make ends meet, which means they might have to work every day. This prevents a lot of people from being able to go to their faith community’s religious service, as they might have to work instead. If people were making a livable wage, they wouldn’t have to work so much, and could go to the religious services they want to.


*“The Church” with a capital “C” refers to the Christian community as a whole. “The church” with a lower-case “c” refers to an individual Christian community.

Wednesday, June 15, 2016

We Must Eliminate Restraint and Seclusion in Schools: Zachary's Story

Crystal Garrett

[image: the cartoon dog Snoopy,
doing the "Snoopy Dance."]
Zachary’s laughter has been called infectious. One specialist even opined it sounded much like Charles Schultz’s famous character, Snoopy.

Those breath-taking sounds of pure joy that burst forth from deep inside his belly are a special treat these days. Zachary doesn’t laugh much anymore.

There’s a reason my six-year-old’s giggles have been replaced by meltdowns. And his story deserves to be told because he is not alone: There are many traumatized autistic children just like him—their stories must be heard, too. And if we have any compassion, we must listen to them.

This is Zachary’s story.

It was only the third day of first grade -- Aug. 26, 2015 -- that my child was involuntarily committed to a hospital more than two hours from my home. Zachary had not been properly diagnosed yet, but we would eventually learn he has Generalized Anxiety Disorder, ADHD and Autism.

At the time I was a reporter for a daily newspaper with beats consisting of breaking news and education, so I was preoccupied with writing an article when I received an email from Zachary’s principal.

“Something’s wrong,” she wrote.

I wouldn’t know just how much was wrong until arriving at the school in Pamlico County, a 30-minute drive from my office in New Bern, N.C. 

Once I arrived at the school, I learned from the principal that Zachary had been restrained in front of his classmates, and physically carried to the principal’s office, where I found him on the floor in the middle of a meltdown -- with at least five adults staring in disbelief at him.

Zachary was curled in the fetal position due to the traumatization from being restrained. He would not speak. And glares from the adults standing above him made his anxiety even more extreme. 

The School Resource Officer was called by officials to the school, where he promptly placed Zachary in the back of a Sheriff’s vehicle without permission, then proceeded to the nearest hospital where he was involuntarily committed due to “tantrums at school,” per the hospital report.

Zachary spent five days at a children’s hospital. His little mind couldn’t comprehend why he was taken away. Due to this situation, I was forced to inform my editor of the need for me to be close by, in order to comfort my child during the hour of visitation allotted each day. 

I wish I could say Zachary’s story is one of a few. Perhaps his is more egregious in the fact he was forced by law enforcement into the back of a patrol car and had his civil rights even more violated by being involuntarily committed to a hospital due to a manifestation of his disability.

But Zachary is not alone.

In 2014, a National Public Radio Investigative report discovered 267,000 cases of restraints being used each year in U.S. schools.

After his hospitalization, things changed at school for Zachary. While his friends enjoyed the freedom of the monkey bars, he spent recess alone in the “Choice” room. He wasn’t even afforded the luxury of lunch with friends. And he was restrained on many more occasions before I finally had enough and, on the advice of his doctor, decided to quit my job to homeschool him.

When asked recently if he would return to the school if teachers were properly trained and didn’t restrain him, he looked at me and said, “Mommy, you would do that to me?” I simply replied, “No,” while secretly wiping away tears.

Things don’t have to be this way. I believe there needs to be a nationwide ban on all restraint and seclusion in schools. Many who opposed this view believe such a ban is an unrealistic goal, and that allowing pseudo-behavioral techniques “in extreme situations” is necessary to keep a child safe from himself, and to protect the other students in the classroom.

The problem is there is no universal definition of “extreme.” Was Zach’s behavior extreme?  No. Not to me, or to any teacher or administrator properly trained in working with children with disabilities. But to his teachers, who were not sufficiently trained in this area, it was extreme behavior -- and their reaction has caused extreme damage to my child.

We know a restraint and seclusion free environment is realistic. Virginia-based Grafton Integrated Health Network, an organization that works with children and adults with autism and co-occurring psychiatric diagnoses, went restraint and seclusion free ten years ago. Since then, their client and staff injury rate has dramatically gone down, while employee satisfaction has increased. They are now teaching their system, Ukeru, to others across the country, in order to create a trauma-informed environment for addressing aggressive behavior.

Perhaps if more educational bodies knew about this approach, my 60-pound six-year-old wouldn’t have ever been placed in the back of the patrol car that hot summer day. We also wouldn’t have to travel the 30-mile stretch of highway for trauma-based therapy each week.

Due to the enduring trauma from that day, and others in which Zachary was placed in holds and held in seclusion from his peers, I no longer write as a journalist. I write for Zachary with the hopes there will be more days filled with laughter.

Tuesday, June 14, 2016

Holly Robinson Peete on Including and Understanding Autistic People Like Her Teen Son RJ

 Holly Robinson Peete | Photo: Gatepath
[image: Candid photo of actress & author Holly Robinson Peete]
Actress, author, and philanthropist Holly Robinson Peete spoke at a Gatepath event near San Francisco last week. She talked about her new book Same But Different: Teen Life on the Autism Express, which she co-wrote with her autistic son RJ and his non-autistic twin sister Ryan, about understanding and including autistic people, about supporting autistic kids with high support needs who don't have the resources her family does, and why "We need to spread the word about how neurodiversity is another form of diversity."

TPGA's Shannon Rosa talked with Holly after the event, which was nifty because Shannon worked with the HollyRod foundation during the earliest part of the iPads for Autism movement, including developing a spreadsheet of recommended autism apps, had interviewed Holly, and had featured her writing here on TPGA -- but they hadn't met in person before. 

Shannon Rosa: It's so nice to finally meet you!

Holly Robinson Peete: I know! I feel like I know you 'cause we're such social media buddies.

SR: So can you talk a little about your son RJ's reaction after the rapper 50 Cent made fun of an autistic man named Andrew Farrell on Twitter?

HRP: RJ recently had a meltdown after a concert. He thought he was going to get to do something after the concert that he didn't get to do: See the artist, connect with the artist. Sometimes when he gets something in his mind, it's hard for him to process the fluidity of life. And so I said to him, "Listen, we can't go back there." And it was hard for him to process that -- he was struggling on a lot of levels. And this was in front of a lot of people on the way out of this concert. He was all emotional, kicking stuff and also feeling bad about it, his sister and brother were trying to help him and he was yelling at them.

So he came home, and he cried. He said "I hate having autism, I hate not being able to be in control of what I'm feeling, I didn't mean it, I'm going to apologize to my brother and sister for ruining their night" -- he was very remorseful. We stayed up late talking about it, and I said, "Why don't you write? Just write about it." And he started scrolling on his phone, and the story about 50 Cent came up, about bullying a young autistic man in an airport in Ohio.

RJ said, "That makes me mad!" and so I said, "What would you do if someone said did that to you?" And he said, "Yeah, what if someone did that to me tonight? While I was screaming, while I was in a bad space? What if somebody recorded that?" What if someone like 50 Cent with his eight million Twitter followers shared it and you were viral right now? You can't ever get rid of that."

So he said, "Oh my God." I said, "Why don't you write a letter to Andrew? We can get it to him." And so RJ wrote a letter, saying "Dear Andrew, I can't believe you had to go through that, and I'm sorry. My mom wrote a letter to 50 Cent about something else he did years ago, and you think he'd learn his lesson. I was embarrassed when she did that then, but now I'm mad" (and then he went into some other things that I had to take out of the letter).

The Huffington Post featured RJ's letter, and they got a really big reaction -- but I think what was kind of lost in their version of the letter is how much RJ was personally struggling that night. He had really been having an emotional breakdown. And so for him to connect with this young man, and to put himself in his place, was a moment of empathy that I hadn't really seen him express. He hadn't really connected with other kids with autism before -- almost like he was afraid to say "Oh, that's just like me," because there were moments that he tried to distance himself."

SR: Well, he's a teenager.

HRP: Right. It's not "cool." That's what was so profound, and so compelling for me about his HuffPo piece -- he had a really bad night, but he made something good out of it. We had a lemonade moment!

Same But Different book cover
[image: Orange book cover with
two illustrated Black teen faces
in profile, white text reading
"Same but Different," and black
subheader text reading "teen life
on the autism express."]
SR: Tell me about your book Same But Different. You wrote it with RJ?

HRP: Yes, RJ's voice is in here. Ryan [his twin sister] and I broke down all these different topics with cute chapter titles -- coming up with all the themes of our life, like school, social media, dating, puberty, vacations, where they both struggled. So it's kind of like My Brother Charlie [the kids' book about autism the Peetes wrote when the twins were 12] on steroids. Now Charlie's a man.

But not all of the things in Same But Different happened to us. It's semi-autobiographical. That's why we kept the names (used in My Brother Charlie) Charlie and Callie, because we brought in other families' stories. These are families we've been on this journey with, and it was a chance to weave together all our stories and experiences.

RJ's voice was hard to extract, because he sometimes wants to talk, but then other times he doesn't. We had to keep reminding him that someone was going to read this, and that it was going to help them. He loves the fact that he's an advocate; he just doesn't always feel like advocating. But it's hard when you're on a deadline! So we talked with him about the reality of working, about understanding that this was his job. That he was a paid author. That he got paid for this. He relates to money (laughs). He doesn't do direct deposit for his job with the LA Dodgers, because he wants to see the check and run down to the bank.

SR: It's important to talk about families like ours, with multiple teenagers, in which you have to constantly arrange things to accommodate everybody. Is that something covered in your new book?

HRP: Definitely. We also brought in the two younger guys -- the two little brothers, as peripheral characters. But the family dynamic, it always goes as RJ goes, how RJ was feeling today. And the other siblings expressed that they were sick of that: "What about me?" What about my moody middle teenager boy, who is such a diva, and is going through everything with his hormones -- the other kids sometimes feel a little cheated. And so that open conversation is something that we have in the book. It's more of a "keep it real" moment. I was glad Scholastic was open to having those moments in the book.

SR: These conversations are hard. And you can tell me what you think about this -- but I feel like it's usually hard because we don't have the resources we need to support our kid the way they need to be supported.

HRP: That's right.

SR: And so everybody's figuring it out for themselves. Even in families like ours -- as you said during your talk, the luckiest families.

HRP: We're the ones who have the connections and resources, we can do it. These families that are under-resourced, it's amazing to me how they get by, how they figure it out.

SR: Yes. I just came back from the International Meeting for Autism Research. People were talking about resources and supports, but then we'd have people come in from places like Venezuela and Palestine, and they're worried about things like getting safe transportation, and finding enough food. So how are they supposed to be able to properly support autistic kids? 

HRP: Yeah, we went to the Bahamas and we did some speaking, and they're still tying kids up to trees there, and locking them away, without even giving them a shot at figuring out who they are. And I was shocked to hear about what they do to autistic kids in France. Why are they so bad?

SR: I don't even know. I read an article recently in Psychology Today on why French Kids Don't Have ADHD, and was really irritated. Because it's not that French kids don't have ADHD, it's that the French don't recognize ADHD. The treat it the same way they treat autism -- with psychotherapy.  I remember thinking "Are you even kidding me? That doesn't mean they don't have it."

HRP: (Laughs)

SR: I wanted to ask you, what kinds of resources does RJ look to when he's learning about his own autism? Is he hooked up with any advocacy communities?

HRP: That's a good question. For him, it's all about the Internet. He does his own research, like coming across that story about Andrew. He looks for the word 'autism,' it resonates with him. But because he's 18 now, and because he's a man with a job. There are certain things he connects with, and certain things he doesn't. It's all about Googling, that's his university.

SR: That works well for some people, not so well for others. 

HRP: Yeah, but he finds things. And he always runs them by me, because he knows it's not all true. He doesn't automatically believe everything he reads. He's seen me tear things down.

But -- when I bring him to events like this talk, like a recent one in North Carolina for helping adults live independently, there was a Black man there, about 25 years old, named Dart. He was autistic, Deaf, and had a job, and living on his own; he was signing away, and smiling. RJ asked me, "Why is he smiling? He's Deaf and he has autism." And I said, "He smiling because he has a job, he had a team, he's connected."

It was still hard for RJ to understand, so he asked to get up and speak, and he said, "I am so inspired by Dart and the people in this room, because I don't always feel like smiling." So I find getting him out, and getting him in community, really makes him more aware. It's a resource for him -- seeing other successful people like him.

The other thing he has is a pre-vocational group with a bunch of kids who went to speech and language therapy in Culver City. These kids are African-American, Latino, and white, but they're all in the community -- RJ is kind of the "rich kid." His connection with that speech and language therapy center has been a tremendous resource for him. He got an internship with AIG, they went on a trip together and helped nuns build a farm together. So he has a group of kids who are his age, who are all over the spectrum. That's been a huge resource for him.

SR: Has RJ seen The Autistic Self Advocacy Network's Welcome to the Autistic Community handbook? I wonder if, even if he wouldn't be into it now, it might suit his needs eventually. It's meant to be in casual speak -- for adults and for adolescents.

HRP: Oh! I would certainly like to see that.


Here is TPGA's Storification of Holly's Gatepath talk:

Monday, June 13, 2016

What Surfside Beach Did For Us On Our Spring Vacation

John Ordover

John Ordover recently wrote about Surfside Beach, South Carolina declaring itself an autism-friendly family vacation destination. In April of this year, John, his wife (TPGA editor) Carol Greenburg, and their 13-year-old autistic son Arren spent a week in Surfside Beach, and had a blast. This is his report on their trip.


Arren in the airport waiting room
Photo: John Ordover
[image: white tween boy lying
on top of a carpeted cubby]
On landing in Myrtle Beach airport after an uneventful flight, we were met at the gate by Becky Large of Champion Autism Network (CAN). Becky is the person who had pushed for Surfside Beach to make its commitment to hosting autistic families in the first place. Becky took us to the lovely small airport's special waiting room for autistic kids who might need some chill-out time. Arren took to it immediately and enjoyed snuggling into its cubbies and nooks specially designed to calm kids and give them pleasant sensory input -- plus a way to shut out the rest of the world if need be.

Becky then walked us to our rental car, and sent us off to our hotel, where our room was all ready for us. Arren has a long list of ways in which any hotel room has to be prepped for him: all drinking glasses replaced with paper ones, any coffee-makers removed, and the back of toilet tanks taken off. Holiday Inn Surfside nailed every single item, better than the Disney hotels and five-star places we’ve been to.

Becky also set us up with a mother’s helper named Veronique who has many years of experience working with autistic kids. This was not a free service, but Veronique was the perfect person to help us with our stay,  and she was worth every penny. Arren’s needs were covered six ways from Sunday.

Arren Surfing
Photo: John Ordover
[image: white tween boy surfing]
We chose Surfside Beach not only for its promise to be welcoming to autistic kids, but because of how well it matches up with what Arren enjoys: There was a pool right outside the back door of the hotel. The ocean was only a few steps farther and the beach uncrowded, and Arren loves the waves. He’s water-safe, so with Veronique there to help him in the ocean, our only real concern was that he would decide to swim off with a school of passing dolphins.

After lunch, and thanks to arrangements made by Becky and CAN, Arren had surfing lessons. He had just started learning to surf back home, and loved it, so getting daily lessons was ecstasy for him. The surfing instructor was engaged to an autistic woman and treated Arren like gold -- while pushing him to learn and excel.

A mermaid!
Photo: John Ordover
[image: overhead photo of a
mermaid in water]
After surfing, Arren hit the treadmill and the weight machines in the hotel work-out room, with Veronique joining him in running and pumping iron. Then it was time for dinner at the Calabash Buffet Seafood House for all-you-can-eat crab legs (and plenty Arren did eat) with Becky and her family -- to see their real live mermaid, whom Arren found absolutely fascinating (before you ask, mermaid is not on the menu).

We went back to our hotel room to find that, since fireworks are legal in South Carolina, people were setting off some really cool amateur displays on the beach -- and Arren could see them from his window.   Arren is a sensory-seeker, so fireworks are maybe his favorite thing in the world, which means our generally happy kid was even happier than usual, and went to bed with no trouble. On our last night we even bought a bunch of fireworks and, with the help of Becky and her husband Mike, we took them down to the beach and -- Arren got to set them off himself, to his great delight.

My wife Carol, an autistic sensory-avoider, adds:

“At Surfside Beach, Becky had already sensitized staff at the airport at the hotel and at the various restaurants to look for signs of autistic meltdowns or shutdowns, so when I started to feel overwhelmed there was always somebody right at hand to help me find what I needed. 
“Knowing in advance that there was always somebody trained tohelp me if there was a problem made me feel safe and relaxed. The people of Surfside Beach were so friendly and helpful that when I hit a snag, I didn't have to look for hotel staff but could just ask the person standing next to me for help. Next time we visit, I’ll be spending my time sitting quietly with a book, while my son is happily setting off explosions.”
Because everything Arren loves was within a hundred feet of the hotel, we didn’t get to see much of the surrounding area. But we're going back in September, and look forward to hitting more of the local attractions such as Radical Ropes, Brookgreen Gardens (particularly good for sensory avoiders), and fishing on the pier at Myrtle Beach State Park, which is soon to be autism-friendly as well. We also may hit a dinosaur-themed miniature golf course that my wife had been to as a child. It seems like no matter what you or your kids’ needs are, Surfside Beach and the nearby area has something that will suit you. After all, shouldn’t every restaurant have a mermaid? 

In summary: The hotel was perfect in providing for Arren’s needs down to the last green M&M (obscure pop culture reference), although they do not have a gift shop, so if your kid needs any kind of extra supplies you should stock up on the way. Arren was in heaven, Carol was calm and happy. I could not recommend Surfside Beach more highly, but Arren could. When we were back in Brooklyn, he was at first glad to be home, but a few days later our son, whose greatest challenge is speech, concentrated hard, and asked “Move to South Carolina?”

Wednesday, June 8, 2016

Black and Autistic – Is There Room at the Advocacy Table?

Dr. Poinsett aka Godmother Doc
and @yayayarndiva

[image: photo of a Black woman
with short silver-and-black hair.]
Dr. Pierrette Mimi Poinsett

Over the last year, the Nation of Islam -- which does not represent mainstream Islam -- has resurrected the fallacious “CDC Whistleblower” argument that vaccines, and the MMR vaccine in particular, is causing autism in Black males. That autism is something to be feared, eradicated. At times the rhetoric has gone so far as to accuse vaccines of killing black and brown children.

As both a Black pediatrician and mother of a son with severe mental health and learning disorders, I know that vaccines prevent diseases, save lives, and do not cause autism. Many studies unequivocally show that there is no connection between vaccine components and the development of autism. Autism manifests independently of the vaccine schedule. The reality is that autism is a complex neurodevelopmental condition that likely has both genetic and environmental components – components that do not include vaccines.

The #CDCWhistleblower/Nation of Islam polemic invalidates the lives of autistic children and adults. It erases the existence of autistic girls and women. Also missing from this discredited discourse are the real issues affecting Black and Brown autistic children and adults: they are generally diagnosed at a later age than white autistics. There is also a disparity in support and therapeutic resources for Black and Brown autistics. As a result Black and Brown autistics have less early access to beneficial factors that are important in improving quality of life.

Creating messages of autism awareness and acceptance is crucial for Black and Brown communities, as is more advocacy for and by autistics to ensure access to more resources. Going beyond fear-based messages like The Nation of Islam uses is key, because their ableist language stigmatizes autistics as being damaged, instead of being human and deserving better understanding. We must also recognize that a history of distrust of medical system exists in Black and Brown communities. However it is time to move towards eliminating disparities in diagnoses and resources, instead of solely repeating the history of past wrongs.