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Posts tagged ‘Aspergers’

Editorial: Role of Fathers in Children with Autism

I want to highlight the importance dads play in raising a child on the spectrum. This is not meant to understate the significance of moms, but simply to give fair representation on both sides of the parenting duo. Perhaps if we in the community start giving them the recognition they deserve, more dads will be motivated to get more involved with their kids’ development. This is something we feel very strongly about, and something we feel needs more attention!

Ever since I was diagnosed with ASD at age 15, I’ve noticed the severe lack of not only father, but male involvement in the autism community as a whole. Why is that? Many researchers in recent years have noted the under representation of fathers in both psychological and sociological child-parent studies. They almost exclusively focus on the mothers, which can be seen as devaluing the paternal role. Some believe that this leads to a sort of self-fulfilling prophecy, where the dads believe they’re not as important in their children’s lives, and as such, it becomes an unfortunate reality.

So what exactly is the role of fathers of those on the spectrum? The answer is quite simple, in theory; it’s the exact same as that of the mother. Reality, however, paints quite a different picture. From what I’ve gathered (and I quite agree with this), many believe that it comes from the pre-conceived cultural notion that the mother has to be the more caring, loving and emotional parent, while the father is seen as the cool, detached disciplinarian. Many dads are also more prone to wanting their kid to be a certain way; i.e. have similar interests and careers when they grow up.

With a child on the spectrum, you can see why this would be an issue. Kids with ASD need that extra parental devotion, since it’s difficult for them in their prepubescent and adolescent lives to develop along the same lines as the general populace without said support. The truth is that mothers in our culture are simply more inclined to do so, while many fathers believe they’re not up to the task, and that they’ve “failed” somehow. The culmination of this is the majority of the time, the kid grows more attached to the mom, ultimately resulting in the widespread belief that moms are better fit to raise their child with ASD.

So now that we know what the current state of fathers is (for many, not all), what can we do to fix it? We can spread the word of course! Showcase the wonderful contributions dads have made to the community, highlight those dads who have gone above and beyond to make a difference in their child’s life, and try to persuade those who are unsure that they are just as important as their wife is.

  • G. Sosso

***Update: Shortly after this blog was posted an article was released about a study done regarding dads’ involvement.

Study: Dads’ Involvement Key For Families Affected By ASD

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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.

CARD USF Discusses Autism Programs on Station AM 860

CARD’s Executive Director, Dr. Karen Berkman, Assistant Director Mindy Stevens, Susan Richmond, and Rob Lamke , Operations Manager at The Florida Aquarium, participated in a radio interview with Julie Ames host of Special Needs Family Hour on AM 860.They discussed CARD’s Autism Friendly Business Initiative, The Learning Academy at USF, and our collaboration with The Florida Aquarium. You can listen to the broadcast on Sunday, July 19th at 1pm on AM 860 or as a podcast on specialneedsfamilyhour.com

Radio photo

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.

Mindy’s Movie Critic’s Corner: Disney Pixar’s “Inside Out”

Inside_Out_Second_Poster
Rating: 5/5 popcorn kernels

popcorn

Outstanding! I recently saw this movie and was excited that “emotions” were the main characters of the film. Pixar movies typically resonate with all ages. This film may be the perfect match of the connection of these films and depicting main characters as concepts that people with ASD have a difficult time understanding. As many parents understand, emotions can sometimes be a difficult area to navigate. Emotions may be easily misunderstood or unrecognizable for many.

The main characters are creatively portrayed by “Joy”, “Sadness”, “Disgust” and “Fear”. They put a face and a personality to emotions. In addition, great plot lines about transitioning to a new city, home, school and other unexpected challenges, including loss. You will have many laughs at the understated adult humor. I found myself laughing out loud! Also, some sad moments. I encourage you to take advantage of all these teachable moments after viewing with your kids/teens.

There are many wonderful resources to teach kids/teens about recognizing emotions and life transitions.

http://www.socialthinking.com

http://www.kansasasd.com/socialnarratives.php

http://www.childmind.org/en/posts/articles/2011-8-17-change-better

http://www.pathfindersforautism.org/articles/view/parent_tips_moving

http://tarheelreader.org/

Summer Is Almost Here: Ways To Help Your Child Transition Smoothly

The end of school comes with mixed emotions. On one hand, it’s nice to have a break from the routine that the school year provides and on the other hand, IT’S A BREAK FROM THE ROUTINE THE SCHOOL YEAR PROVIDES! Changes in routines bring positive and negative stress and emotions. How can you help your child smoothly transition into summer?
1. Now is a good time to start talking to your child about the transition into summer time. Perhaps you can start getting their input about what they might like to do over the summer. Giving your child a sense of control is important. Although they cannot make all the decisions for themselves, incorporating their ideas makes them feel supported and validated.
2. It’s helpful to show kids a calendar so they can begin to mark off days until the last day of school. This provides a visual for kids and makes the time left in school easier to understand. They may want to pick a few days on the calendar to do something special for their teacher before the end of the year or plan a small celebration on the last day.
3. Another idea is to allow your child to take some pictures with their teacher, friends, classroom, etc. and make a little photo album to remember this year. They can even make a card for their teacher and put one of the pictures in it.
4. Over the summer, it is best to try to stick to as much of a routine as possible that mimics the school year. If you can continue to help kids stay on their same sleep schedule, even better. Waking and going to sleep at the same time during the summer will make the transition back to school in August that much easier.
5. Try to incorporate some academics over the summer. You can pick up inexpensive workbooks at bookstores or even the library that your child can work on over the summer to keep skills sharp. Make a goal for 1 page per week.
6. If your child has an IEP, pick one or two goals to try to focus on so not too many skills are lost.
7. Don’t assume your child is feeling a certain way about school ending. Talk to them about it. Let them know that however they are feeling (sad, nervous, excited, all of the above) are normal feelings that most kids feel when something is coming to an end and something new is beginning.
Erica DuPont, LCSW
ProTherapyPlus, LLC
www.protherapyplus.com

Positive vs. Negative Reinforcement

This is a topic I’ve always found quite fascinating; which behavioral adjustment method is most effective? To alleviate any confusion for those who may not be familiar with the terminology: positive reinforcement (PR) is learning a behavior in order to get rewarded for it, whereas negative reinforcement (NR) is the opposite: learning a behavior in order to avoid a negative outcome. Together, they are one half of what is known as “Operant Conditioning” in psychology, the others being positive and negative punishment. Note that NR is completely different from punishment. NR is supposed to strengthen good behaviors, while punishments are intended to discourage bad behavior.

To paint a clearer picture, here is an example related to a child’s performance in school that showcases the differences between the four.

PR: doing well in school results in a reward; i.e. getting a new video game. NR: doing well in school means not getting grounded. Positive punishment: doing poorly in school results in getting grounded. Negative punishment: doing poorly in school results in having your video games taken away from you.

Now it would appear to anyone reading that the obvious answer would be PR. I mean, everyone loves being praised and receiving awards when they do good, right? However, the answer is not so simple. Like many things in life, we need to take a deeper look to come to an understanding.

Before I get into the meat of the issue, let me give a bit of background on myself in regards to it. I need PR; for a while during my teenage years, all my parents knew was NR, and our relationship suffered greatly because of it. In addition to constant punishments, both negative and positive, all I was ever told was what would happen to me if I didn’t do what they wanted me to. Not only did this backfire immensely, but it made me want to rebel even further because I felt terribly victimized. Once they changed their approach, my entire disposition changed almost overnight. It was invigorating. I wanted to succeed and do well now, because I sought the pleasure doing so would accrue to me. But that’s only my story; not everyone is the same.

Which method is best depends on the individual. For some, PR will result in complacency and laziness, while that same person will be brought in line by, and respect, the more unforgiving nature of NR. Others, like myself, will see PR as giving us the motivation to work towards a goal (or just generally good behavior), and live in unhealthy terror of the boogey-man that is NR.

Through my many hours of study on the topic, perusing forums and articles, I’ve come to the conclusion that there are 2 main factors to consider when you’re pondering which method to apply to your children. First: their mental/emotional maturity; i.e. age, mental health, disabilities, etc., and second: how far along in the process you are of replacing the bad behavior with the good. When you first set out to eliminate a bad habit, associating unsavory outcomes with said action is a good way to train yourself not to do it, hence why NR is a good starting point.

Eventually, however, the seeds of rebellion will be planted. You’ll start resenting the constant threat of punishment looming over your head if you don’t perform the behavior. From the previous example, if a child comes to associate doing well in school with not being grounded, eventually they’re going to get fed up with never having any tangible rewards and rebel against you out of spite. They may not necessarily want to fail in school, but it’s their only way of showing that they need some sort of recognition for their good deeds.

This is where PR comes into play. Once the child has been conditioned to believe that doing well in school is generally a good thing, then change your approach a bit to help him/her maintain that behavior. Start taking your kid out for ice cream whenever they get an A on their test or something similar. Then they’ll come to associate success in school (and eventually, work) with success in life.

Once again, every child is different, and PR and NR don’t just apply to them. We’re constantly readjusting our own behaviors in life well into adulthood. I hope that this little piece has helped you gain a better understanding of the pros and cons of both approaches, and that you can make a more informed decision while choosing which to pursue.

Gage Sosso

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