How You Can Honor World Autism Acceptance Day

[image: Me and my three kids sitting on a bench in a San Francisco park
in 2015, eating ice cream and enjoying each other's company.]

People all over the planet are observing World Autism Awareness Day today. My autistic friends and my family, however, prefer to follow The Autistic Self-Advocacy's example and observe Autism Acceptance Day.

Why acceptance? Because autistic people like my teenage son Leo deserve the love and respect that come with acceptance, not merely acknowledgment that autism exists. Awareness is passive. Acceptance is a choice.

Here are ten ways you can honor Autism Acceptance Day, and autistic people of all ages:

1) Honor communication. Everyone communicates. That includes autistic people of all abilities. If your autistic loved one struggles with spoken language, the best action you can take in their honor is to help them find a communication system that works for them, whether scripted speech, typing, a symbol-to-speech device or app, sign language, or a letter board.

You also need to understand that an autistic person’s spoken words may not accurately represent what they’re thinking, or their intentions. When my son jumps up and sings “The cold never bothered me anyway!” at me, I understand he's telling me that his current environmental temperature needs to change. If he asks me to repeat phrases after him, he's asking for reassurance.

Autistic communication isn't necessarily verbal or language-based; sometimes communication happens through behavior, like a child refusing to get out of bed, or being upset with routines that usually comfort them. It's important to pay attention to this kind of communication; while it may be a show of independence, behavioral changes can also be an autistic person's only external sign of illness.

Also honor autistic ability to participate in communication. My son, like many autistic folk, takes a few moments to process spoken words. But he understands most everything people say to him. There is no need to talk to him in a sing-song voice, or speak extra slowly. Besides, where is the harm in talking to him like you would any other teenager?

2) Honor competence. Recognize the things your autistic loved can do, and encourage them to do them. Have patience if the learning takes a bit longer than you might expect—autistic kids' legendary ability to “suddenly” do things like read or ride a bike is often the result of extended practicing, even if, at the time, it seems the practicing wasn't clicking . So please try to avoid doing things for your kids that they are willing and able to do for themselves. Their independence and sense of self-worth need to trump your momentary convenience.

And don't forget to presume competence. This doesn’t mean you should assume every non-speaking autistic child is a hidden genius; it means you should always treat every child like a worthy human being. It means, as the autistic writer/self-advocate Julia Bascom tells it, remembering that:

"...talking about someone in front of them, dehumanization, infantilization, segregation—are wrong to do to anybody. There’s not an IQ threshold for being treated with respect, for being included, for being treated like a person.”

3) Honor interests (even if you think they are age-inappropriate). So what if your teenager loves watching Curious George, or your eight-year-old only wants to talk about forensic pathology? Seriously, where is the harm in encouraging such interests if they make your autistic child or loved one (or self) happy? As autistic advocate Lydia Wayman writes,

"I am finishing my Master’s degree in English and creative writing, yet I cannot cross a street without help, struggle with independent living skills, and possess a strong affinity for anything Disney or Hello Kitty. This spike-and-valley development may be atypical for most people, but it is a totally typical way for an autistic person to develop and sets the stage in each individual for the culture we build together."

4) Honor sensory needs. Many autistic people's senses are more finely tuned than a non-autistic person's hearing, smell, or sense of touch. Noises that don't bother you if you aren't autistic may be unbearable to someone who is. Other people's perfume may feel like chemical warfare. Being in a crowd may feel like drowning. These perceptions are very real, so consider that if you refuse to acknowledge or accommodate autistic sensory needs, you are essentially torturing a fellow human being.

5) Honor executive functioning difficulties. Autistic people often struggle with organization, sequencing, problem solving, and other executive function (EF) skills. So do everything you can to support your autistic loved ones in this area, by helping to develop supports such as checklists or visual schedules. Further EF accommodations can include eliminating simple barriers in the home, like installing towel hooks instead of towel bars, using open laundry bins instead of ones with lids, or storing dishes in a lower cabinet instead of an upper one. Small changes like these can make big differences in the happiness and functioning abilities of people you care about (or, again, your own self).

6) Honor anxiety. The world is not usually a friendly or accommodating place for autistic people, given some of the topics mentioned above, so it's no wonder that anxiety is such a common co-occurring diagnosis for autistic people. It's also one that needs to be taken seriously. Please do what you can to respect an autistic person's verbal declarations or behavioral indications of anxiety; your consideration can make the difference between an autistic person getting through their day, or having a meltdown. Which brings us to the next topic:

7) Honor routine. Autistic people like my son can find comfort in routine, whether it's visiting the same restaurant as a family every Saturday, or using the same series of steps and scripted phrases to get dressed in the morning. As far as many autistic people are concerned, anything different is bad, and a source of stress. Especially surprises.

If things need to change, do what you can to make the transition easier, in the fashion that works best for the autistic person in question. Would a custom "social" story about the transition help? Or would they prefer to ask you, every few minutes, to repeat the same scripted details about the upcoming change? Again, do what you can to accommodate, especially if that autistic someone is dependent on you.

8) Honor autistic role models. There are so many autistic people online being proud and fearless. Learn from them, bow to them. A very incomplete and haphazard list includes Ruti Regan, Mel Baggs, Ido Kedar, Morénike Oniawu, Paula C. Durbin-Westby, M. Kelter, Julia Bascom, Emma Zurcher-Long, Lynne Soraya, Lydia Brown, Judy Endow, Amy Sequenzia. John Elder Robison, Max Sparrow, and Emily Paige Ballou.

9) Honor the undiagnosed autistic people you already know. We know that autistic people have always been here, that most of the increase in autism rates has to do with changing diagnostic criteria to include more people, and that women especially often go undiagnosed. This means that the current CDC autism estimate of 1 in 68 people is probably too low. This means you likely have more autistic people in your life than you officially know you do.

So try to show respect and kindness rather than irritation towards people who, for example, you'd otherwise think are one-upping you when you tell them about your experiences and they reciprocate by telling you about their own related experiences—as such reciprocation is a very autistic way to empathize. Smile and nod and try to honestly listen to the little girl who wants to tell you about every possible gem category and the subtle differences between them. Kindness and courtesy rarely cause harm, after all.

10) Honor autistic people as their own unique selves. Do not disrespect them by trying to view them as flawed, or potential, non-autistic people. Do not be surprised by or resentful of autistic adults who have gained more skills than your autistic child currently possesses. Do not talk about autistic people having less mature minds in more mature bodies. Do not try to cajole them into doing things that cause them distress, like going to loud parties or talking about whether there is an autism epidemic (again, autistic people have always been part of human society). Just show some respect by trying not to impose your non-autistic sensibilities onto them.

Because autistic people are, again, individuals. Treat them that way. Accept that some may possess a wicked sense of humor, but totally miss others’ reciprocated (or retaliated) humor or sarcasm. Accept that some function best with noise-canceling headphones at school and work. Accept that some autistic people loathe hugs. Accept that some autistic people crave hugs. Accept that some autistic people may enjoy skipping as a form of locomotion whenever possible. Accept that your preferences may surprise them, and their preferences may surprise you.

Accept. Accept. Accept.

On CBC Radio: Speaking Out When Autistic Children Are Murdered

I was interviewed last month by the CBC's George Baker for the Daybreak North radio show, about the murder of autistic teen Robert Robinson at the hands of his mother Angie. Lara Lohne graciously transcribed the interview, and I am posting it here for those who wish to read rather than listen. I have edited the transcript for clarity and grace, e.g., to remove my "erm"s and overuse of "right?," etc.

The original audio version of the interview is at When Autistic Children Are Murdered, Are They Treated As Victims or Triggers?

My blog post about Robert, which precipitated the interview, is Please Stop Being "Understanding" When Autistic Kids Are Murdered

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George Baker (GB): Prince Rupert RCMP say that earlier this month, 40-year-old Angie Robinson killed her autistic 16-year-old son, then she killed herself. Family members say Robinson and her son didn't get enough support. But Shannon Rosa says that's no excuse for a mother to kill her child. Rosa is the mother of a son with autism, and an advocate for families with autistic children. In a blog post titled "Please Stop Being Understanding When Austic Kids are Murdered," she writes:

"Once again the implication is that Robert's mother Angie, who could tell people what she was experiencing and could have walked away, was the victim; and that Robert, who relied wholly on Angie to communicate and advocate for him and who had no escape options, was ... his mother's trigger."

“When autistic children are killed by their parents are they treated as victims or triggers?” Earlier this months in Prince Rupert, 40 year old Angie Robinson killed her autistic16 year old son, Robert. Then she killed herself.

Family and advocates say a lack of support services are to blame for the situation. Shannon Rosa's son also has autism. And following the deaths of Angie and Robert she wrote a blog post titled, 'Please Stop Being Understanding When Autistic Kids Are Murdered.' She's a writer and advocate in the San Francisco Bay area and she joins us now. Good morning, Shannon.

Shannon Rosa (SR): Good morning.

GB: As the mother of a son with autism, what went through your head when you first learned about this story?

SR: Mostly I just cried -- I have to tell you -- because [parents murdering their autistic children is] not an isolated incident and it happens too often, and too often the message is “Oh that poor mother” instead of getting information about the victim, sympathizing with the victim and trying to get out more understanding about autism so we can prevent this from happening again. [Robert] looks exactly like my son, it was uncanny, really. So ... I just cried.

GB: Physical resemblance, of course, is there. How much, though, can you relate to the struggles that Angie Robinson was apparently going through?

SR: My son really is quite a lot like Robert. He's also the most amazing kid, we love him so much. We need to get that message out too: We don't hear enough stories about happy families.

My son often has a hard time, because it's often hard to be autistic. So many times with autistic people who can't speak, they aren't given the opportunity to advocate for themselves. They can't communicate if they're bored, they can be sick, they can have sensory sensitivities: they can hear everything in the room and it sounds like gongs going off all around them. They can have visual disturbances and all these things. 

Could you imagine being in situations like that and being a very tall, very strong person? If you read stories of autistic people who can now communicate but who when they were younger were like Robert, or they were like my son, Leo, they will tell you how maddening it is and how frustrating it is. 

I think if we're going to talk about services, we need to talk about services before we get to a crisis, we need to talk about getting services so that we can understand our autistic children and adults and get them what they need to be able to function and live a happy life.

GB: Talk about what life is like with your son. What are some of the challenges you face, every day?

SR: Ok, well, I don't like to get into it too much because I like to respect his privacy.

But he's mostly non-speaking, in fact right now to expand his quality of life and ability to communicate, we are investigating a device that actually allows him to communicate by touching on symbols, it's like an iPad and it produces spoken speech. Because a lot of the time, autistic people will be intelligent but they will have motor planning issues that make it so they can't produce speech -- but they can use devices like this. So he's learning to use that, which is great.

He goes to a school for autistic children and they actually have an adult program as well. He needs 1:1 support because really, he's very autistic and sometimes he lacks impulse control. So he wouldn't necessarily understand that he shouldn't open up car door on a freeway. But that's not because he's misbehaving, although some cases it might be. It might be that the reaction he gets from me when I see him open the door is so great that he can't resist doing it.

Again this goes back to understanding autism. I think there's a real problem with people thinking autistic kids and people are bad, when they are misunderstood. And back to these murders: you see people who are very wealthy or who have all the services in the world who still murder their kids because they don't understand autism, or they want their kids to be "cured," or not everybody has the ability to be the parent for a child who has intense needs.

I think in the case of somebody like Angie and Robert, where everybody talks about how much support that the family had -- in that case, when we have autism families we need to be very vigilant about [watching for] signs of stress. The message that we need to get out to them is that if you think you're reaching the edge, what you can do is you can call 911 on yourself. I don't know, I apologize, if it's the same code in Canada as it is in the States. But it's better for your child to be with the authorities and alive than it is for your child to be dead. That's the message that people need to hear. Over and Over again. 

Some [other autism parents] say I'm not terribly sympathetic to them but the thing is -- I am a parent to a child with intense needs. I get it. He's big, he's as big as me now and he's only going to get bigger. But understanding that parenting can be difficult and getting in the mind space where someone would kill their kid, those are two separate things. So I think if parents are having a really hard time, that's when you need to reach out -- not when you're at the point where you feel like you're going to murder your child. Because, again, parents who are mentally ill, most of them don't kill their children, parents who have autistic children, most of them don't kill their children. So it's not because of services, you know what I'm saying? If that makes sense.

GB:  Yeah. The portrait painted of Angie by the people who knew her,  is one of a mother who loved her son but was unable to find help and ultimately driven to take her own life so I ask, is there not room for sympathy here?

SR: That is absolutely what I'm saying. But the sympathy needs to be extended before you get to the crisis. The sympathy needs to be with people who are alive, instead of after the fact saying, “Oh my God...” you know, “she should have done something differently” ...

I'm sorry, I'm getting a little flustered just because this is very emotional for me.

We need to get the message out to parents like Angie that it's OK if you're at the edge. It's OK to surrender completely in that you can give your child up to the authorities. You can walk away. It will ruin your life, yes, but at least your child will still be alive. You can do that.

I'm part of an organization called Thinking Person's Guide to Autism and all we do, all day long (and in our book) is advocate to get parents services and understanding, and work with autistic people and professionals as well. This is all I do, all day long. So there's no chance of lacking empathy or sympathy for other parents. But I cannot extend it when somebody crosses the line. Although I can say that if they didn't understand that calling services on themselves and abandoning their child is an option, then that's due to lack of understanding. That's the message we need to get out, instead of saying that autism causes murder.

GB: There's been a lot of criticism on the BC government and the rest of society, quite frankly, here in Prince Rupert about how much service there is for people dealing with children, coping and living and raising children with autism. Is there not room also for this to become a political story, a societal story in which people are forced to react?

SR: I can't do that. I can't get behind that because then you are saying, essentially, that if autism families don't get services then they're going to kill their kids. You know what I'm saying? If you use that as your lead. I think we need to work harder and longer to get services to the autistic people and their families who need it because it's what they deserve as human beings. It needs to happen, it's just what we do as a society that cares about all the people in it. And I know that BC's had a really hard time with cut backs recently, but we need to look at who the most vulnerable people in our society are, who can't necessarily advocate for themselves, and just because they aren't given the opportunity to advocate for themselves doesn't mean they don't deserve to be taken care of.

GB: Shannon Rosa we'll have to leave it there. Thank you so much for talking to us today about this very difficult topic.

SR: Thank you for having me, I really appreciate it.

GB: Take care, Good bye.

SR: OK, good bye.

GB: That is Shannon Rosa, a writer and advocate for families dealing with autism. She's also the mother of an autistic son. You can find her blog at www.squidalicious.com. We, of course, would love to hear your take on this story. Email us at: daybreaknorth@cbc.ca, Give us a call 1-866-340-1932.

We are also on Facebook, and on Twitter @DaybreakNorth.

*Canadian Broadcasting Corporation, essentially Canada's NPR or BBC. 

Attention Costco Shoppers: You Have Destroyed My Faith in Humanity

Had to go to Costco this afternoon. Had to. I needed to buy a bushel of apples for a conference that SEPTAR is hosting in two days, plus snacks to give Iz and all thirty of her classmates caloric boosts to help them plow through the mandated silliness that is STAR testing, plus stock up on the treats that Seymour's parents prefer as they're coming to stay with us in less than 36 hours.

I've had good luck taking my three kids to Costco. Leo likes to ride in the big cart and get straws from the restaurant area. Mali likes to make new friends every five yards. Iz likes to cruise the sample carts and tell me which food items we simply have to buy. It's fun. Most of the time.

Today I needed to buy more bulky items than I usually do, so Leo had to walk for the last half of the shopping. And Mali was being a serious PITA* to Iz, who lacks the self-regulation to move away instead of retaliating. The three were fairly roily by the time we reached the checkout.

At which point Mali lost it, because they had balloons and she wanted one and she couldn't have one. She turned on the tears.

So then of course Leo lost it. He started sobbing, with big tears of his own, and smacking himself in the head. This scared Mali, so she cried harder. This made Leo more upset, so he kept trying to reach Mali in her basket seat, to hit her and make her be quiet.

They were really, really loud. They drew the attention of every single person in the crowded space between the checkout stands and the exit, many of whom watched/tried not to appear as if they were watching as I struggled to push the overfull cart to the side while trying to keep Mali and Leo apart, hugging and kissing and reassuring them to see if I could help them calm down.

At least forty people walked by. Not one asked if they could help, even as Leo's attempts to hit his sister grew more obvious and his crying grew louder.

I was able to get Mali to take a deep breath and stop wailing, and resumed our shuffle to the exit. We then had to walk across the parking lot to our car. It was a visible struggle to push the weaving and uncooperative cart with one hand while holding onto Leo with the other. He was still determined to get his little sister. Iz, bless her, kept stepping in to deflect Leo's maneuvers, but her actions made pushing the cart even more difficult. At one point I resorted to hopping on one foot and pushing the cart with the other. All as people kept passing us on either side, pretending we weren't there.

We made it to the car and I got Leo and Mali strapped into their seats. That's when I started crying, too. Iz was concerned, but seemed relieved after I told her, "Yes, I'm crying. That was really hard. You were very helpful. Thank you."

Please know that if you see a child who looks too old to be having a tantrum going into full tantrum mode, there's a good chance that child is autistic. It's okay to watch and see if the adult has the situation under control.

Please know that if you see someone who looks like they might need help -- as opposed to someone who is disabled yet going about their business -- please ask if you can be of assistance. Even if they tell you "no, thank you" or even if they're hostile in refusing your offer, think of what would happen if they really did need help and you didn't offer it because you were too afraid of offending them or interfering. Were those people at Costco waiting to see if one of us actually got hurt, first?

Leo has been doing so well on these kind of excursions, today excepted. I don't want to stop bringing him along. Learning to tolerate routine errands is critical to his social and cooperative learning. Leaving him at home even more than we already have to do fractures my kids' perceptions of sibling- and family-hood. Most importantly, Leo is a social boy. He doesn't want to be a shut in.

But we don't always have successes. Sometimes, like today, we have catastrophic failures. And when that happens, it is doubly difficult when our community fails us, too.

My hands are still shaking, hours later.

*Pain in the ass