Florida's First Choice for Autism Support

Posts tagged ‘development’

Having a Sibling with Autism

kids-walking-image

“Don’t walk behind me; I may not lead. Don’t walk in front of me; I may not follow. Just walk beside me and be my friend.” – Albert Camus

Admittedly, having a sibling on the autism spectrum can be stressful at times, especially if the two of you are close in age. Growing up, it’s unlikely you’ll receive the same attention from your parents that they do. That is, of course, nobody’s fault, but for a young mind it can be hard to comprehend why your brother or sister is getting more attention than you. There’s also the unavoidable issue that if you’re not used to the behavior, dealing with someone (especially a child) with autism can be difficult. Many are prone to outbursts or tantrums, can’t fully understand social cues, don’t take an interest in a wide variety of activities, etc. But there’s so much more to it than that. There are few things more beautiful than the bond between siblings, and just because yours may have ASD doesn’t mean you can’t form that special relationship. Here are some of the unique advantages to having a sibling with autism; hopefully after reading this, you will gain a greater appreciation for your sibling.

First of all, you will gain a unique perspective of the world vicariously through your sibling. Kids on the autism spectrum almost always have a different outlook on life, and see the world in a unique, individual way, totally outside the norm. As the sibling without autism, you will learn very early on that the world is in no way black and white. There is no absolute binary on how things can be done, but rather, just like autism, there is a whole spectrum of possibilities. With good parental guidance, you will come to learn that individuality is something to be cherished and valued, not shunned. From your experiences dealing with an autistic sibling, you will go into adult life with an open mind and the ability to see the world from multiple viewpoints. Not only does this shape an individual with compassion, empathy, and acceptance of differences, but it also inspires innovation and creativity.

This brings me to my next point: creativity. One of the few universal traits of ASD is a difficulty in communication skills. But siblings, as I mentioned before, have a special and unique bond that allows them to understand each other on an entirely different level, autism or not. Considering the uniqueness with which those on the spectrum see the world, often being very creative, that rubs off on the other sibling. Simply having that connection exist and gaining firsthand exposure to such an exceptional worldview opens the mind to new creative potential. Desires to express oneself through music, visual design, writing or the arts can manifest in grow for both siblings, creating a symbiotic relationship.

The last point I want to talk about is how it can make you a far more accepting, compassionate person. Like I pointed out, having a sibling with autism can be a difficult thing, and their behaviors erratic at best. However, I believe this also presents an opportunity to grow into a better sibling and thus a better person overall. Growing up, you naturally come to know your siblings better than anyone else, and how to deal with all their little nuances. Dealing with the worst behaviors autism has to offer all throughout your formative years molds a person into someone who can empathize with just about anyone, and I believe you become all the better for it.

I would like to recommend this blog from Autism Speaks, from the perspective of a young lady whose brother has autism. It’s a great insight into everything I’ve been talking about, and I enjoyed reading it immensely.

  • 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

Transitioning into the Working World

Out of all the issues we try to address here at CARD, there is perhaps none more important than how can we help kids on the spectrum, who just finished, or are finishing, high school successfully transition into the adult (working) world? It can seem like a monumental task at times, even downright impossible, but it’s not! I was in the exact same position when I graduated from Lakewood Ranch High School back in 2013, and my life sort of stalled until I found CARD, and of course the Learning Academy. They helped me a lot, and hopefully I can do the same thing for anyone reading this.

According to the Autism Society via the Bureau of Labor Statistics, as of “June 2014, only 19.3 percent of people with disabilities in the U.S. were participating in the labor force – working or seeking work. Of those, 12.9 percent were unemployed; meaning only 16.8 percent of the population with disabilities was employed (By contrast, 69.3 percent of people without disabilities were in the labor force, and 65 percent of the population without disabilities was employed).” The difference between the 2 is enormous, and clearly speaks to some sort of correlation; such a gap cannot be mere coincidence. Now, to be fair, part of the blame does lie on those with the disabilities. Less than 20% of people on the spectrum were looking for work, and that is a huge part of the problem.

Many employers hear the negative stereotypes associated with workers with mental disabilities, and don’t want to take the risk of hiring them. Things like laziness, the inability to follow orders, taking longer to accomplish tasks, lack of social skills, etc. are just some of the reasons companies aren’t hiring from this demographic. And it cannot be denied that, for many young, and even full-grown adults, these things are an issue that plagues them. But, just like any other problem, it can be fixed if both the boss and employee are willing to work together and be understanding. Perhaps if more companies realized this, they could see some of the positive attributes people on the spectrum can bring; i.e. resourcefulness, creativity, unique perspectives and the ability to point out the little details others might miss.

So now we know a few of the issues, but how can we go about fixing them; i.e. making the transition? I think this article sums it up quite well, “For young adults who go directly into the employment world, it will also be critical for them to focus on their strengths and what brings them the greatest joy. They will want to explore different areas of the job market. Different work environments may help different individuals to excel. There are many opportunities for supported employment, where the employer offers supports to a worker with different challenges. Other individuals will require less support and may do better independently.” Basically, you need to find your passion, and there are many organizations that can help you out with that, including CARD!

Source: http://www.autism-society.org/what-is/facts-and-statistics/.

 

G. Sosso

Sesame Street’s Julia & Autism Initiative

Growing up one of my (as well as millions of others’) favorite educational programs was Sesame Street. They always managed to balance clean humor with teaching a good lesson, and they rarely talked down to their audience. Recently, I’ve learned two amazing things about the show, one of which is the topic of this blog. First, the previously anonymous man behind the blog “Autism Daddy” was revealed to work for Sesame Street! He’s even done voice work for the puppets and is the main force behind the new Sesame Street autism initiative, which I’ll get too momentarily. I highly suggest you check out Autism Daddy if you haven’t already!
As I mentioned, Sesame Street has been hard at work using their enormous platform to promote autism awareness across the world. They’ve even added a new character, Julia, to the show who has autism (her behavior implies Aspergers). Something you may notice right away is that yes, this new character is a girl, which is almost unheard of in today’s entertainment. According to the Centers for Disease Control and Prevention, 1 in 68 children are diagnosed with autism, but the number is skewed between the sexes. 1 in 42 boys are on the spectrum, while that same number for girls is only 1 in 189. That’s the main reason why whenever a character with autism is portrayed in the media, they’re almost exclusively male.
So why was Julia introduced? What mission is Sesame Street hoping to accomplish with their newest program? Well, according to PBS, “‘The initiative, Sesame Street and Autism: See Amazing in all Children,’ provides educational tools in online and printed story books and as a free downloadable app that feature “Sesame Street” characters explaining to children how to interact with friends, like Julia, who have the neuro-developmental disorder.” It sounds to me like they are definitely serious about this, and from what I’ve seen of the materials they’ve released so far, it seems to be a resounding success. The other question many people are asking is, “why did they choose a girl?” While it is true that autism is more prevalent among boys, I actually really like the move. Sherrie Westin, the VP of Sesame Street, commented on this, and I couldn’t agree more. “We made sure she was a girl namely because autism is seen so much more often in boys,” she said. “We wanted to make it clear that girls can be on the spectrum, too… We’re trying to eliminate misconceptions, and a lot of people think that only boys have autism.”
I hope Sesame Street will continue to use their influence to help more people on the spectrum, but from their track record and what I’ve seen so far, I have nothing but confidence in them. Below is a picture of Julia with Abby and Elmo.

julia

  • G. Sosso

Sources:

PBS: http://www.pbs.org/newshour/rundown/sesame-street-debuts-julia-first-character-autism/

There and Back Again: The Learning Academy

It always feels special to be able to gain a new perspective on something, and my most recent project is a perfect example of that. For those who may not know, I am a 2015 Learning Academy graduate now employed by CARD as a writer/copy-editor. It was the Learning Academy (TLA) that provided me with the skills I needed to hold down a job and cope with the real world, and now I get to repay them for all that they’ve done for me. I’m initiating a project where I’ll be tracking the progress of two current TLA students, Sean and Lizzy. I will be showcasing where they were at the beginning of the year, and how far they’ve come by the end. But that’s neither here nor there; the real focus of this blog is what a truly visceral experience it was going back into the TLA classroom, not as a wide-eyed, eager student, but as an employee, team member and someone of actual authority.

I caught my first glimpse of the new TLA class a couple months ago, during their orientation (which I remember mine like it was just yesterday!). I could see the looks of uncertainty on most of their faces, as well as a hint of cautious optimism. I can’t speak for them of course, but I can safely assume they were feeling the same torrent of emotions that I was; apprehension, hope, anticipation, joy and courage in the face of this new chapter of their lives. To be honest, when I went up to deliver my speech announcing the aforementioned project, I was very nervous. I had practiced what I wanted to say in my head a million times, and I had no problems speaking publicly last year when I was a student, but this time I had to make a good impression. I didn’t just represent myself and my own progress; I was a reflection of CARD and TLA as a whole. Luckily, I did not choke under the pressure, and received a warm reception.

My second meeting with the new class was far more low-key. In order to get a good feel for how things are going, I stopped by for the last half hour of class, and let me tell you, I can scarcely think of another time when I felt so much nostalgia. It was very tempting for me to raise my hand to answer some of the questions Megan was asking just as I had done last year, but considering I was no longer a student, I knew it would not be proper. It is a testament to Megan’s teaching ability that despite the fact that an entire year had passed, I still clearly remembered the lesson being taught, its real-world applicability, and how we used it to aid us in discovering an internship that we could succeed at.

I look forward to seeing how this year’s TLA class will fare, but from what I’ve seen thus far, I have the utmost confidence in them. And at the end of the year, when they all graduate, I’ll be watching fondly, knowing from personal experience just how special of a moment it truly is.

To learn more about the The Learning Academy at USF visit their website.

  • 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.

Guest Blog: “Interfere with her”

These were the final words of advice from the child psychologist who diagnosed my daughter with ASD over 23 years ago. At the time, I understood neither why this was so important, nor how to do it.
As I read books and articles, connected with community service agencies, therapists, and most importantly with CARD, the picture slowly began to emerge.
Left to her own devices, my daughter would quickly develop rigid habits, obsessive rituals, and limited interests. It became important to offer her alternative opportunities and experiences, although each new experience often led to yet another expectation, habit or ritual. But at least they were expanding, right?
The research literature years ago was more focused on interventions than it is today. These days, most research dollars are aimed at understanding genetic and environmental causal factors for ASD, and thus possibly identifying biomedical treatments for the core symptoms. To date, though more and more physicians are prescribing medications for children and adults with ASD, none successfully address the core symptoms of communication/social skills and restricted and repetitive interests and behaviors. Most medications simply attempt to address non-core symptoms such as anxiety, aggression, depression and OCD.
As for interventions, most researchers are satisfied that methods based in various forms of applied behavior analysis are considered the most effective. Other interventions based in relationship development, cognitive behavior therapy and mindfulness are among those considered emerging, promising, or even sufficiently evidence-based to be recommended by referring professionals.
As a parent, I tried to identify what all the numerous types of interventions had in common, and the one thing I kept thinking of was the psychologist’s words to me as I was on the way out the door: “Interfere with her.” These interventions all, one way or another, attempt to draw individuals with ASD away from habitually limited patterns of thought and behavior, and expand, or generalize, new skills into more socially- and community-based interactions.
So…how do we do that, as parents, when our children can’t be in therapy every waking hour of the day, and most of us cannot afford the maximum recommended amounts of interventions suggested by research?
Some interference occurs naturally, through regular family activities such as worship services, or when children reach an age of eligibility for school services, whether that is at age 3 or 5.
Entering new environments such as school, therapy, or community-based athletic, recreational, or arts classes, can be problematic and stressful. However, if the transition to a new environment is handled according to the child’s need for information through social experience stories or other visual supports, most children with ASD adapt well and come to anticipate the regularity of the new environment. Rules and expectations for each setting may be contextually-specific, but are usually readily accepted by our children, once they successfully comprehend what is being asked of them. The importance of this step cannot be overemphasized.
Other ways of interfering may take place in the family context at home or in the community by deliberately adding activities to a wall calendar or posting flyers of upcoming fairs, football, baseball or hockey games, concerts, or even unique community events such as the recent “Light it Up Tampa”. Each event or activity is a great opportunity to expose children to new environments with new sets of rules, expectations, and perhaps even inspiration.
Just be aware, this may create dozens of new expectations for events that occur weekly, monthly, or annually. In our family, each season is replete with events my daughter anticipates months ahead of time, and we are a very busy family, especially during fair and festival season.
However a family chooses to “interfere”, one thing I have learned is that the gentler that interference can be, the better and more effective. Roughly pulling a child away from a session of lined-up cars or recital of lines from his favorite Disney movies will create resistance without adding a new skill or motivation to divert his attention. Supporting a shift through advance awareness and rewards, which can be faded as the experience itself becomes more reinforcing has worked well for us.
Having said that, the tendency to engage in rigid, limited or ritualized behaviors is still present, but the people who work with my daughter who understand her need to be gently mentored and guided into new areas of experience are still the most successful, and she seems so much happier for it.

Jean

anna clay

Tag Cloud