Archive | September, 2012

Handcuffs

23 Sep

Last week an autistic boy was handcuffed after allegedly getting out of his seat harness and biting several people on the school bus. You can read the full story here.

The mom says “[they] should have treated my son differently. They should know how to handle autistic kids.”

The school spokesperson says the bus driver and aide “followed protocol” by calling police when they weren’t able to calm the child down.

;

I may catch some flack for what I’m about to say…but I’m going to say it….

Whether or not a person has autism has no bearing on the acceptability of aggression or violent behavior. None.

Might there be an alternative to using handcuffs? I don’t know. Maybe… I have no idea. But the point of putting someone in handcuffs is to reduce the risk of the person hurting themselves or others. In this case, it was not a punitive response. It was a safety response. And to expect the community to “know how to handle autistic kids” is preposterous. I get that in this case, the bus driver and aide probably have had training in dealing with autism. But I’ve had lots of training, too. And sometimes children still get aggressive! So expecting people at large to know what to do in these cases is outrageous. As much as I’d love a world where people had tons of knowledge and experience and understanding of autism…they don’t; I can’t expect them to. And I certainly, can’t and won’t, expect the world to pardon violent or harmful behavior because a person is autistic. Yes, it’s important to spread awareness; I fully support that cause! But the reality is that the world does not revolve around autism. I’d be really curious to know what this mom suggests the people involved should have done instead. In my coursework training to become a Board Certified Behavior Analyst (BCBA) we were taught that if a person’s behavior endangers themselves or others and they are not able to be calmed or controlled, we should call the police. Now, whatever led up to the aggression in this case…maybe the staff could have done those things differently. Or maybe they did everything exactly right! Who knows! But regardless of the antecedent…if the response is aggression that threatens other people’s safety, stopping the behavior and protecting people is really all that matters in that moment.

And, ultimately, this story reminds me why working on these behaviors while children are young (and small) is SO, SO, SO important. I am in NO way suggesting the mom in this article isn’t doing what she can to manage her son’s behaviors, or that parents of aggressive autistic children are at failing to do something. My own brother can become aggressive sometimes. And one of my biggest concerns has always been how people will handle these behaviors when he gets bigger. He will probably outgrow my mom in less than 5 years. So it’s imperitive to get it under control now. And I really encourage other parents to look ahead when dealing with aggressive behaviors. If it’s hard now, it will be exponentially harder down the road. Please don’t bury your head in the sand. I know it’s painful. I know it’s hard. I know it’s draining. I know it’s scary. And, I know it seems easier to just give in sometimes to make it stop. But not addressing it now will make your own life (and theirs) so much more difficult down the road. I implore you to hold the long-term picture in your head at all times. Sooner than we know, autistic kids will be autistic teens, and autistic adults. And the community around us will have even less tolerance for unsafe behavior. So the best thing people can do in the here and now, is never lose sight of the bigger picture. Our vision for the future can be our compass for the present.

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Confidentiality

19 Sep

As I discussed in an earlier post, I was attacked for my use of my brothers name and picture when sharing about his diagnosis on my blog. Confidentiality is a hot topic for parents, and people on the spectrum. And by “hot topic” I mean scorching, blazing, on fire!

Here’s the breakdown of what I have gathered from both sides of the coin (click to enlarge):

As for me, it’s not that I don’t see the benefits of keeping things confidential; I do. And it’s not that I completely agree with everything Pro-Openness people think or do;  I don’t. But, I obviously lean to the Pro-Openness side. So after the heat I took for it from people on Tumblr, I reached out to a woman who writes a weekly column (for a big newspaper) about her experiences with an autistic son. She has faced backlash for publishing his photo along with her articles a few times, so I knew she would have some words of wisdom on the topic. She wrote me back right away, and gave kind words of encouragement. One theme in her response was that she has come to accept that she will not please everyone, and she doesn’t strive to.

It’s true. Anything that anyone says/writes/does  is up for debate. But, just because that’s the case does not mean I need to change my story, or the delivery of my story, to fit other people’s molds.

In the end, I think each person has the right to make their own decisions about confidentiality. So, if my stance doesn’t align with yours, I hope you’re able to refrain from judgment, ridicule, or condemnation. And, if your stance doesn’t align with mine, I promise to do the same.

Bullies

14 Sep

A new study (discussed here) reports that 46% of autistic teens and pre-teens are bullied. This is almost 5 times higher than the national average of typically developing children who fall victim to bullying. Plus, the study indicates that higher functioning kids on the spectrum are targeted more than severely disabled kids.

I guess it makes sense…people, even kids and teens, usually have compassion for those who are clearly disabled. They “feel bad” for the person, and they know it’s wrong to make fun of them. But the kid who walks and talks and goes to the same classes and plays the same sports….well when that kid does something unusual, he’s just a weirdo. It’s almost as though the more a person fits in, the more they stand out. High-functioning autistic kids are on a level playing field with their non-autistic counterparts in so many areas. So the areas they may not be up to par tend to be more noticeable (difficulty with conversation, understanding sarcasm, jokes, or social cues, difficulty relating to others emotions, etc).

So why is this happening? And how can we stop it?

Well this is where education comes in.

Educating kids about diversity, and compassion, and inclusion.

Educating kids on disabilities and how they can be part of the solution instead of part of the problem.

Educating kids on acceptance, tolerance, love…

You see, I was bullied as a kid. Junior high was torture for me. I went to school in a very wealthy beach town, but I wasn’t one of the rich kids. I was teased relentlessly for my clothes, my hair, my teeth, my music preferences, where I shopped…..and I was called all sorts of terrible names. Most of my 7th grade year I spent passing periods and lunch breaks roaming the large campus (pretending to be busy going from building to building) so that I wouldn’t have to be seen sitting alone. I would even make pretend phone calls on the on-campus pay phone sometimes to avoid people. It was really miserable. And to this day I still remember the people who bullied me. (Oddly enough, I’m now friends with a few of them on Facebook. ) But those memories haven’t left. They probably never will. Bullying hurts. And it made going to school a nightmare for me. So, I’d like to impart to whoever reads this some words that an old family friend told me when I started high school…

He said, “You never know who is looking up to you and just wishing you’d notice them. So be nice to everybody. You never know if your smile might make somebody’s day.”

I believe it. None of us know just how much our behavior affects other people. So, I think it’s important to teach kids how they can make an impact. And, to talk with them about what type of impact they want to have. Do they want to be that bully that someone remembers 14 years later? Or do they want to be that friendly person that people remember, the one who was also so kind ? What if their kindness inspired others? What if their greeting or smile or invitation to a special needs student meant the world? What if their attitude about diversity meant no one had to sit alone at lunch? What if they could make a difference? (Spoiler alert: THEY CAN!)

It’s so important to empower children and teens, and to encourage loving relationships with people, even if they’re different. And besides, once someone opens up to an autistic peer, they might just realize what a great person he or she is! And most of all, I want to impress that these beliefs and attitudes start at home. If parents foster an appreciation for diversity, rather than make it something scary or bad or wrong, their children are more likely to follow suit.

Last, but not least, here are some excellent resources for more information on how to educate children about peers with special needs:

http://www.care.com/special-needs-teaching-your-child-about-peers-with-special-needs-p1017-q598.html

http://www.education.com/magazine/article/teaching_kids_special_needs_peers/

http://diaryofamom.tjandpals.com/2012/03/04/teaching-children-special/

Person First Language

2 Sep

“Autistic person”…or “person with Autism”?

Many people and parents have strong opinions on this topic. The idea is that calling someone “autistic” is looking at their diagnosis, instead of them as a person. Whereas, saying “person with autism” is looking at the person first, and diagnosis second.

Many autistic people write about their dislike of person-first language. They assert that person-first language suggests you can separate them from the autism, which they believe you can’t. Autism is a part of them, and not a shameful or terrible part that needs to be separated. They are proud of who they are and don’t want their autism carrying a negative connotation.

Other people with Autism are passionate about their preference for person-first language. They don’t want to be defined by, or reduced to, their diagnosis. They feel calling someone “autistic” is dehumanizing the person. People are more than their diagnosis. They prefer people to look at the person, not the disability.

Personally, I vacillate between the two phrases. My own family isn’t particularly emphatic about one or the other, so I find that I interchange them. I have worked with families that use person first language, so when I’m around them, I do too. I have also worked with other families that don’t, so when I’m around them, I don’t either. But overall, my experience has been that people I’m around don’t really care either way.

I feel that the separation of the person and the diagnosis perpetuates the stigma that it’s “bad” or “wrong”; Almost as though Autism is something so terrible or tragic that it needs to be estranged, rather than seen as part of the person. (Now, I am not necessarily saying  “Autism is simply a beautiful, wonderful gift we should embrace!!!” But, I certainly don’t think it helps to overly vilify the diagnosis.) We use descriptors all the time in everyday life; “blonde girl”, “tall guy”, “fast driver”, “loud teacher”, “shy kid”, etc, etc, etc.  And, in using those descriptors, we all realize those things do not define the person. They are just a way to quickly describe or categorize. No one would suggest that calling me a “brunette” is confining me, or reducing me, to a hair color. Everyone knows I am still a whole person, and pointing out my hair color is just looking at one part of me…not denying all my other qualities. So I think it’s the same with “autistic”. It’s used to describe something about a person, not to negate their wholeness as a human being.

With that said, I understand people are going to have strong opinions on both sides of the fence. And, that’s okay. Because I don’t feel extremely zealous one way or the other, I can pretty easily adjust my language based on my audience at any given time.  And interestingly enough, from my research online, it seems most autistic people actually prefer to be called “autistic” and rebuff person first language.

I’d love to know where you stand on this issue.

Here are some excellent blogs on this issue:

http://autismmythbusters.com/general-public/autistic-vs-people-with-autism/jim-sinclair-why-i-dislike-person-first-language/

http://www.stuartduncan.name/autism/the-last-word-on-person-first-language/

http://www.journeyswithautism.com/2012/04/25/the-problem-with-person-first-language/

http://suite101.com/article/personfirst-language-and-autism-a56063

http://illusionofcompetence.blogspot.com/2012/08/disability-first-autism-is-not-accessory.html

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