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Posts tagged ‘communication’

Loneliness & Autism

Image result for lonely picture

 

We’ll be shifting gears this time around to talk about something a bit more serious. There’s been a trend in my blogs to write about subjects which hold significance to me for one reason or another, as I find it much easier to write when you can personally relate to the topic at hand. This week is no different, as I’ll be discussing loneliness and how it affects people on the autism spectrum. Due to the socialization issues faced by those with autism, making and (perhaps most importantly) keeping friends can be a daunting task, despite our pure intentions. This lack of companionship can be highly damaging to anyone, let alone individuals on the spectrum. However, I promise if you just keep at it, and stay true to yourself, eventually good friends will come along. But I digress, let’s get into it.

From what I could find, apparently there used to be an idea that people with autism didn’t feel lonely or, at the very least, weren’t as severely impacted by it as others. I find this idea dubious at best. One study from the University of Missouri measured “loneliness, number and nature of friendships, depression, anxiety, life satisfaction, and self-esteem.” It was discovered that among this demographic, a lack of close friends increased depression and anxiety, while lowering self-esteem and satisfaction with life. This holds true for myself and everyone else I’ve ever known with autism.

It is possible that many people, mostly children, with ASD may not understand the connection between loneliness and real friendship. Making acquaintances is one thing, but having a true friend who’ll be there for you through thick and thin is difficult for so many of us. According to Tony Attwood, a well-known figure in the autism community in Australia, children with autism have weaker friendships than their neurotypical peers and don’t understand that their loneliness stems from that. “Whereas typical children define and understand loneliness as being alone (with no one to play with) and feelings of sadness, the majority of autistic children define loneliness as only one dimension of being alone. They tend to not attribute an emotional feeling (e.g. sadness) to their loneliness.” That degree of sadness that they don’t quite understand leads to intense feelings of depression and loneliness which is almost impossible to break out of.

As I’ve alluded to, the true cure for the devastating effects of loneliness is to forge strong friendships. A few years ago, I made 2 friends who are the best I’ve ever had, and for the first time I feel truly happy in my life. I feel better about myself than ever before. And this idea is definitely supported. From the first study I referenced, it was found that a “greater quantity and quality of friendships were associated with decreased loneliness among adults with autism spectrum disorders.” Interacting with the social world we live in can be challenging, and even scary at times, but as I said before, just keep being you and one day the right people will notice, and make a great friend in the process.

  • G. Sosso
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Autism & Anime Connection

For those who may not be familiar with the term “anime,” I will provide a brief overview for reference. Simply put, anime is at its core, animated material originating from Japan. Think of them as Japanese cartoons, though there are some differences such as story structure and animation style.

But that’s not the purpose of this blog post; instead, I would like to focus on something that, while mostly anecdotal in nature, is something that I’ve always noticed and hits close to home with me. I am referring to the wide appeal anime typically has to people with autism spectrum disorder. It was difficult to find hard data or research on this topic, but with what little I could find, along with my own experiences, I’ve compiled some reasons as to why anime is as popular as it is among those with autism.

First and foremost is the element of escapism. Of course, this could be said of most mediums, not just anime. However, anime has a few advantages that separate it from many of its contemporaries. In anime, many main characters are social recluses; outcasts who have yet to find their own niches in life. Suddenly, they’re thrust into a magical world full of wonder and adventure where everyone accepts them. Almost every anime in existence has a bit of the classic “power of friendship” trope where the once-timid hero saves the day through the unbreakable bonds he’s forged with the rest of the cast. Most reading this can see why such a thing would be so appealing to someone on the autism spectrum. Many of us are awkward in social situations, and dream of having tons of friends who accept us for who we are. The presence of such things in anime is very alluring.

Reading non-verbal cues and noticing subtlety is not a strong suit for those with ASD. It’s one of the few nearly universal traits in fact. Fortunately, anime’s got that covered! Japanese animation does not focus on subtle movements and gestures in the same way Western cartoons do, and in order to compensate, a character’s emotions are put on full display using extremely obvious visual cues. For example, if a character is in love, hearts will appear over them. If they’re nervous, sweat drops will envelop them. If they’re angry, they’ll start heating up and their eyes will get cross, etc. Here is a great example:

Anime storytelling does a good job of always letting the audience know what is going on and how characters are feeling, which is good for those of us who cannot always easily discern such things.

Finally, is a pretty simple reason actually. The anime community is one of the most welcoming, tolerant groups out there. People with autism are often afraid of what the general population will think of them, and the thought of socializing is terrifying. Interest in anime is generally looked down upon by those who aren’t familiar with the medium, and as a result, are very warm towards those few who do share their interests. Those on the spectrum who’d ordinarily be afraid to express themselves, can find acceptance among those who share a common passion.

> G. Sosso

Technology & Autism

It’s no secret that technology has completely changed the face of society, especially in the boom of the past 20 years or so. We have things like smart phones, tablets, notebooks, smart watches, etc. which have made things so much easier for all of us. But how does this affect those on the autism spectrum? In what ways can we utilize this new amazing technology to improve life for people with autism and their families? It can act as either a learning tool or a great source of entertainment depending on the context.

Perhaps the most prevalent use of technology in regards to people on the spectrum is that of “assistive technology.” The Technology-Related Assistance for Individuals with Disabilities Act of 1988 describes assistive technology as “any item, piece of equipment, or product system, whether acquired commercially, off-the-shelf, modified or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities,” in this case autism. One good example I can think of is an app that one of my mom’s good friends uses with her son called “First-Then Visual Schedule.” Oftentimes visual learning is the primary method for those with autism, and this $10 app helps present a visually stimulating schedule that will help people keep better track of their lives. This is just one example, there are many more out there that do a myriad of different things; here’s a convenient list on parenting.com that features 11 apps including the aforementioned First-Then Visual Schedule.

Technology is not confined to the assistive variety, in fact many use it as a way to stave off boredom. It’s no secret that children with autism particularly love video games, as they talk about here, and with the rise of casual gaming brought about by tablets, there’s a never-ending supply of fun to be had. While tech addiction is a real thing and should be avoided, sometimes as a parent you just need some time to yourself. One of the best ways to keep your children occupied is to get your kid a video game system, or even just an iPad with Candy Crush, Crossy Road or Angry Birds, and they can keep themselves busy for hours at a time. Trust me, I speak from 21+ years of experience.

One interesting thing I would like to highlight is this little gem: Project EVO. It’s a therapeutic tablet game made specifically for kids with autism. Here’s what CBS said about Project EVO: “As they [the kids] go through the game they are supposed to skirt around certain objects while choosing others. The idea is to condition the brain to sift through and organize information in real time, requiring a player to stay focused on the task at hand.” It’s a very interesting concept. The game has not yet been released, but I look forward to tracking its progress.

 

  • G. Sosso

A Note to High School Teachers about Autism

It’s no big secret that high school can be a challenge for anyone, not just those on the spectrum, but for many of them, the struggle is greater than any other. They’re still growing up, many have yet to learn any true applicable life skills, and classes can be a challenge if the teacher is incapable of keeping the pace of their lessons at an acceptable level for all of their students. Many go through that phase where everything their parents say is wrong and they’re always right (don’t worry we all do it). These are just some of the many issues which can make high school so difficult. I know for me personally, high school had its ups sure, but on the whole I barely made it through at times, often only passing due to the intervention of my mom or dad chatting with my teachers and getting me back on the right track. Here, I want to discuss some issues facing students with autism in high school, and perhaps some solutions that can help resolve the main issues.

Nowadays, students with ASD participating in general education classrooms is trending. Many are beginning to feel that just because a kid has autism, doesn’t mean they can’t or shouldn’t receive the same knowledge as everyone else. For those who may not be “in-the-know” about what autism is, some of the most common characteristics are difficulty in social situations, an inability to spot sarcasm or tone of voice, repetitious actions, and a general aversion to change. According to Veronica Fleury of UNC’s Center on Secondary Education for Students with Autism Spectrum Disorders, “Many educators find that they’re not prepared to adapt their instruction methods to meet both state standards and the diverse needs of students with autism.” In a similar study, it was noted that students on the spectrum had a disproportionately high participation in the STEM fields compared to the general populace, regardless of gender or income. If that’s really the case, then it’s apparent that high schools need to prepare these students with the necessary skills for achieving their goals, as STEM fields are some of the most difficult to succeed in.

Another thing to keep in mind, especially if you are a teacher, is that a lot of individuals on the spectrum have unique (or at least different) learning styles. When planning for instruction, keep in mind that for the most part, students with ASD are visual learners, literal learners, and require consistency, according to this resource. For example, out-of-nowhere pop quizzes and numerous hands-on activities aren’t going to be very effective for most, as they’ll quickly lose interest and won’t absorb a single word coming out of your mouth. Be forthcoming and explicit with your expectations, don’t leave anything up for interpretation or else the student may not understand what they’re supposed to do in a given situation.

Additionally, try to keep the student engaged with other members of the classroom. If given the chance, many with autism will clam up and not want to socialize at all. This simply isn’t going to cut it in the real world, so try to prepare them by having them participate in group work. If you follow these tips, dealing with your student should be much easier.

> G. Sosso

Father’s Day

Father’s Day is coming up and I wanted to devote this blog to all the wonderful fathers out there! Earlier this month, I got to visit with local autism dad Olando Rivera, former champion kick boxer and owner of the B.A. Warrior gym here in Tampa. If you’d like to read about my visit and get some great input from a primary source, please feel free to check out here.

It’s no real secret that compared to mothers, fathers don’t receive nearly the same amount of appreciation for what they do. To be fair, there are (mostly cultural) reasons for this. With many families in America, the dad is out working most of the day while the mom stays home and raises the kids. There is no study to support the claim that women naturally have more compassion than men do, though according to this article, women express compassion more often through “nurturing and bonding behaviors,” which is advantageous when taking care of a child with autism. Like most things, however, these are just generalizations, and not always the case. There’s a national trend lately that’s seeing more and more dads act as the primary caregivers in the household. Pew Research reported in June 2014 that at least 2 million men are stay at home dads in the US alone  and that number has surely risen since then. So the men are there, and they’re not going anywhere! And this is in no way meant to marginalize the impact or importance of moms; quite the opposite in fact. The mom is the wheel that keeps the whole family spinning, and without them we’d all be lost. This is more about giving thanks to the dads out there, who are just as important and should be respected as such!

To all the moms out there: please, encourage your husband to take a more proactive role in your child’s life. If you read what Olando had to say, follow that advice. His bond with his son is so strong because he got involved, broke down that barrier that so many kids on the spectrum erect, and both father and son are stronger for it. Ultimately though, it’s up to the dads to take that big step. Olando had a great quote: “There’s nothing you can do to change your situation, other than change your situation.” This is very true. A very similar thing happened to my own dad a few years ago. Before I got my diagnosis, my relationship with him was rocky. Not terrible, but we never really connected all that well. After the diagnosis, and after seeing a family therapist, he completely turned things around; he “changed his situation.” Now he and I have a wonderful relationship and I love him dearly. Its stories like Olando’s and hopefully even my own that we’re trying to create more of here at CARD, by raising awareness leading up to Father’s Day.

This Father’s Day, remember to give your dad a big hug, maybe get him a little gift, and most importantly, let him know how much you love and appreciate him!

  • G. Sosso

Funding an iPad and Apps for Your Child

iPads and apps are becoming more common as tools for communication and academic participation. The costs are still fairly prohibitive for many families, however. There are several ways to look for information on funding sources and other ideas for obtaining an iPad or iPad apps for your child.
These are just a few. Be aware that things often change quickly in the online world. Organizations, grants, and other opportunities can come and go quickly, so these directories, such as the ones from Autism Speaks, Bridging Apps and iTaalk may provide links to organizations that are no longer active. For example, the Babies with iPads program is still listed in several directories, but gave away its last iPad in December 2014, saying it was just too difficult to continue to raise funds as a non-profit.
Directories of grants and other funding ideas:
• Autism Speaks Family Grant Opportunities (collected info from various organizations). This is a very comprehensive list. https://www.autismspeaks.org/family-services/resource-library/family-grant-opportunities
• Bridging Apps – Funding Sources for iPads and Mobile Devices: http://bridgingapps.org/funding-sources-directory/
• iTaalk Autism Foundation Resource page includes a list of grant organizations. They say it’s updated quarterly, so it should be fairly current: http://www.itaalk.org/#!resources/cqqo
• WonderBaby – 5 Ways to Get a Free iPad for Your Special Needs Child: http://www.wonderbaby.org/articles/ipad-funding-special-needs
Here are just three of the many granting organizations mentioned in the directories:
• Autism Cares: www.autismcares.org/site/c.mqLOIYOBKlF/b.4844551/k.9606/Technology_Grant.htm
• ACT Today: www.act-today.org/act-today-grant-program.php
• HollyRod Foundation’s Gift of Voice program: http://www.hollyrod.org/gift_of_voice

Other ideas for raising money:
Website Fundraisers – These websites will let you set up a campaign so that family and friends can donate funds.
• PayPal for Personal Fundraising https://www.paypal.com/webapps/mpp/fundraising
• Fundrazr https://fundrazr.com/
• Give Forward http://www.giveforward.com/
• The Puzzling Piece http://www.thepuzzlingpiece.com/
• GoFundMe http://www.gofundme.com/

Holiday and birthday gifts. Ask friends and families to give Apple/iTune gift cards instead of other gifts. Local businesses, community, or charity groups sometimes help with community fundraising by having special events.
Some credit cards give points that can be redeemed for an iPad or cash to purchase an iPad.

Finally, the Apps for Autism Facebook page will frequently list FREE apps offered by the developers, as well as the latest information on apps. https://www.facebook.com/AppsForAutism?ref_type=bookmark
Sources of information for this article:

Autism Speaks www.autismspeaks.org

Apps for Autism, Revised & Expanded Edition, by Jois Jean Brady, 2015.

Future Horizons http://fhautism.com/apps-for-autism-revised-and-expanded.html.

To the Moon and Autism

to the moon

I’ve been noticing something about myself recently; my interest in video games is declining rapidly. They simply don’t pique my interest in the same way they used to. However, something I do love is a good story, and story-driven games seem to be the one exception to this trend. So I decided to try out the 2011 title To the Moon, which I had heard good things about. I was expecting a solid, engaging story. What I got was so much more. It nearly brought me to tears, not only from the plot itself (which was terrific), but from two of the characters: River and Isabelle, both of whom are on the autism spectrum. So without further ado, here’s my “review” of To the Moon.

Brief Plot Synopsis
I won’t spend too much time on this one, since it’s not the focus of this blog, but it is important to understand the basic gist of what’s going on in this world the writers have created. Basically, the story takes place somewhere in the unspecified future, where a controversial technology has been created that allows those who operate the machine to enter someone’s mind and alter their memories. The fictional Sigmund Corporation uses this method to grant the last wishes of people on their deathbed, who want to experience something they never got to do in their life. Our story opens up with 2 Sigmund employees, Dr. Neil Watts and Dr. Eva Rosalene, who have been contracted to fulfill the last request of an elderly man named Johnny Wyles, who wants to go to the moon, though he is unsure as to why. Along the way, we see Johnny’s life unfold through the eyes of Neil and Eva. Most importantly, we see Johnny’s now-deceased wife, River, before, after and even during her diagnosis with ASD. I won’t spoil any of the specifics of the story, both out of courtesy and for the sake of time, but I truly can’t recommend it enough. You do not have to be a gamer to enjoy To the Moon (in fact, with the exception of an arbitrary puzzle mini game every now and then, there’s no actual game play here besides walking around).

Portrayal of Autism
We see two vastly different depictions of ASD in To the Moon, which I’m glad to see, considering how it is a spectrum and no two people on it act the same, something which is addressed in the story. As I mentioned before, there are two characters in the game with high-functioning autism (heavily implied to be Asperger’s, seeing as how this came out before ASD became the all-encompassing term), River and Isabelle. River never got diagnosed until she was already a middle-aged adult, and by that point it was too late for any real therapy. She spent her entire life being an outcast with little to no social skills, as well as habits that no one else could understand. The only people she connected with were Johnny and Isabelle, who could appreciate her. Speaking of Isabelle, she represents the other side of the coin. Her ASD was caught early on in life, and she was able to receive the help River never got, and as a result, emulate the behavior of the ‘neurotypicals’ as she calls them. You might think that Isabelle was the lucky one here, and in some ways you’d be correct, but Isabelle herself actually envies River. Since she went through so much therapy, she never really got to be her true self; she sees her entire persona as a mere facade. This really spoke to me on a deep level, because it brings up a major ethical question: is it truly better to change who you really are for the sake of fitting in with society’s expectations? For someone on the spectrum, whose way of life is preferable: River’s or Isabelle’s? To all the parents out there: do you think that treatments are worth it, if it means fundamentally changing who your child is? I don’t think that there’s a right or wrong answer either way; it’s situational and up to personal preference. But it’s a question that I certainly believe is worth asking.

Overall, To the Moon was a satisfying experience, and I’m glad I picked it up. It explores its narrative in a way that the medium is reluctant to emulate. If you want an interesting take on ASD, alongside an emotional, at times heart-wrenching story about loss, regret and the power of love, then I suggest you try it out too.

Written by Gage S.

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