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Posts tagged ‘ASD’

Internet & Cordiality

In today’s world, I try my best to not be cynical; to maintain a positive outlook on life despite all the divisiveness that’s going on in our society. However, even in my best moments I can’t deny the volatility that exists in certain places, and nowhere is this more apparent than the internet. In particular, online forums like Reddit or micro-blogging sites like twitter. Now obviously everyone is free to say and do whatever they’d like online. In the overwhelming majority of cases you’re not in any physical danger, but I do have some suggestions on how to make your time on the internet as enjoyable and non-confrontational as possible. I do this because many people on the autism spectrum are naïve. Mind you, this is not a knock on anyone, as I would certainly include myself in that category.

Allow me to get this one out of the way as soon as possible: unless you’re going into political science in college or something similar, try to stay away from political discussions. This isn’t to say that you shouldn’t stay informed; in fact, I encourage everyone (autism or not) to keep up with current events. Just make sure to check as many sources as you can to avoid false information. No, what I’m talking about are the comment sections. Chances are, you go to the comment sections of any political post on Facebook, YouTube, Twitter, etc. and you’re going to encounter a firestorm of negativity and vile. If you value your sanity and self-worth as an individual, keep your distance.

Repeat after me: anonymity is key. Again, in writing these blogs, my hope is for them to be of use for at least a few people. This is a mistake I know many with autism make, and it is so important to remember. Do not give out your real identity or personal information to anyone ever. Predators know how innocent people on the spectrum can be, and they’ll use that to their advantage, either to scam you or have some mean-spirited fun. Besides the obvious financial issues that arise, this can lead to a plethora of nightmarish scenarios such as doxing or swatting. It’s harrowing to read about some of these occurrences, and it can be a mentally scarring experience, so please tread carefully and protect your privacy.

Unless you’re talking with a trusted source, or if it pertains to your health, try not to disclose your ASD to strangers online. Having autism, unfortunately, has become somewhat of a stigma in certain corners of the internet. Being forward and upfront about your diagnosis just invites cyber bullying and other cruel treatment. On the flip side, don’t try to use your ASD as a catch-all for avoiding any criticism. For better or worse, when you post something online, it is truly there forever, and is open for scrutiny. The world is never going to stay silent on anything you say or do just because you have autism. In fact, many will see it as a feeble attempt to garner sympathy if you use your condition as an excuse, something I’ve learned the hard way before.

> G. Sosso

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ICI’s Evaluation of TLA

“The Institute for Community Inclusion (ICI) at the University for Massachusetts Boston conducted a one-year evaluation of TLA to explore its essential programmatic elements, and the ways in which the experience influenced student transformation. The evaluation included a thorough observation of program structure, curriculum, daily practices, and history, as well as detailed interviews with TLA staff, students, parents, mentors, and external collaborators. The findings showed that TLA influenced students’ personal growth and transformation, manifesting in a newfound self-confidence. At the end of the program, students described themselves as having greater self-awareness, self-esteem, independence, preparedness, and social competence. The purpose of this brief is to share the lessons learned from TLA to inspire similar programs and other transition professionals striving to optimize transition outcomes for students with ASD.”

Read the entire brief here.

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My Take on Becoming an Autism Friendly Tampa Advisory Committee Member

Recently, I was asked to join the new City of Tampa’s Autism Friendly Advisory Committee, a council approved by Tampa Mayor Bob Buckhorn. It was an incredible honor, and almost overwhelming in a way. While it may have something to do with self-confidence issues, I felt like I didn’t deserve it. All I am doing is indulging my passion for writing with this blog, and now I’m asked to represent the ASD community in the Tampa Bay area? While it’s still difficult for me to process, I decided wholeheartedly to accept the invitation. The meeting included representatives from several prominent institutions around the area, including MOSI, Glazer Children’s Museum and WEDU, and all were fully committed to the idea of an autism friendly Tampa Bay. For my own part, I put forward several ideas on how to improve the general relationship between individuals with autism and the city, such as promoting success stories and highlighting the positive aspects of inclusion in regards to ASD. If there’s any way for me to continue to provide a voice for our community here in Tampa, I’ll be proud to do so.

Perhaps the most important thing we discussed in the meeting was CARD’s crown jewel, the Autism Friendly Business Initiative that, with collaboration from the mayor’s office, has expanded into Autism Friendly Tampa (AFT). I’ve discussed it previously in past blogs, and you can read all about it on our website, but essentially AFT is a project aimed at training various businesses around the city, as well as the city employees & first responders. The training is provided by CARD-USF at no cost and seeks to improve an understanding of autism and best practices to engage and accommodate those on the spectrum and their families. Considering the significant number of us (there are estimated to be more than 25,000 people with autism in Tampa Bay), you can see how important this is to us. I fully support AFT’s efforts, and speaking from experience I can see the incredible potential. While I’ve never felt discriminated against in any way, I will say going out to certain places can be an anxiety-laden nightmare, where I feel like I’m being judged for my awkward posture, stuttering speech, inability to make eye contact, etc. Removing that layer of fear I know would be valuable not only to myself but others as well.

For its part, Tampa has been receptive to AFT, and we believe in it going forward. The positive feedback we’ve already received has been fantastic. One respondent went into detail about the importance of this project. They wrote, “cooperation with traffic and safety departments for a process to request caution road signs for motorist awareness could potentially save lives,” “The things some people may take for granted, such as dentists’ offices, recreational programs and therapy providers are critically important to our families,” and “With the right people and resources in place, I’m confident the Tampa initiative will have a profoundly positive impact on autistic individuals and their families.” This is a sentiment we hope to hear echoed over the coming years from families across the region affected by ASD.

G. Sosso

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** To view the official City of Tampa’s press release and the list of committee members click here.

 

My Diagnosis and How It Changed My Life

For this latest entry in my little section of CARD’s blogosphere, I want to take a step back from the more research-based topics that I usually tackle and weave a more personal tale. I do this for two (somewhat similar) reasons; namely, I haven’t done so in quite a while and desire an outlet for my (nonexistent) narcissism, and two, the thought of connecting to someone through my writing has always been a dream of mine, and I feel that if just one person who reads this can relate to my story, and somehow see a reflection of themselves, then I have succeeded. In previous writings I’ve done for CARD, I’ve referenced my late diagnosis, but never fully went into detail about the ramifications it had not only on my life, but the life of my family as well. So, without further ado, let me share with you my journey to the discovery of my autism spectrum disorder.

As I alluded to earlier, I did not have the luxury of something like CARD when I was younger. My diagnosis was a late one, which definitely had an ill effect on my childhood and early adolescence. Without a name and “face” to whatever was causing my  misbehavior growing up, the assumption became that I was just shy, introverted and lazy. And while I cannot deny that there may be some merit to those assumptions, they don’t paint the whole picture. My parents thought I was exhibiting these behaviors out of apathy for life, and that I could easily fix it if I just tried hard enough. While this is no excuse for poor behavior, I can assure you there was no way I could cure the issues which ailed me without significant outside help.

My parents, bless their hearts, had no idea what to do with me between the ages of 9 and 15. I often didn’t do my homework, never socialized, outright refused to work or do chores, was disrespectful (though that was never my intent, I later realized why it came off that way), and quit every extracurricular activity I ever participated in. Their go-to punishment were groundings, and they were constant. Not only did they have no effect, they worsened our relationship considerably. Oftentimes, confrontations turned into screaming matches with me ending up in my room in tears. I never wanted to approach my parents, and they felt they were losing their son, so it was clear something needed to be done.

Cue 9th grade, the worst year of my schooling career. At this point, things were at an all-time low, and my mom suggested therapy one day out of the blue. I didn’t have the best opinion of therapy at the time, as my sessions when I was younger amounted to little other than the aforementioned “he’s just shy,” but I figured it was worth a shot if I didn’t want to end up as a runaway. My therapist, Marilyn, really in many ways saved my life. She immediately recognized the dysfunction within my family, and she knew something with me was off. As a therapist, she could not officially make a diagnosis, but she is the one who got me and my family to consider the possibility of ASD, as I fit much of the criteria.

After recommending a licensed psychologist, I went in for several rounds of testing, and the results were… telling. Not only was I diagnosed with ASD (Asperger’s at the time), but several other mental issues I’d rather not disclose. While certainly eye opening, it was almost a relief in a way, both for me and my family. On my end, it was a relief to know that I wasn’t some loser who just acted out of spite, and that there was a reason I was different from all my classmates. For my parents, it was much the same, but now they had something to go on as far as getting help. And help they did! I continued to see Marilyn, we started doing family therapy, I got the medication that I needed at the time, and most importantly, I repaired my once-broken relationship with my parents. Knowing that I had ASD also allowed me to do my own research and help to develop better coping mechanisms that work for me, and as a result I’ve become a more well-rounded, productive person.

To cap all this off, I just want to speak directly to anyone on the spectrum reading this who may be struggling, be it with family or their own self-worth: things will get better. Accept who you are, love yourself, dedicate yourself to self-improvement, and never be ashamed of who you are. If your ASD diagnosis is a recent event and you’re trying to cope with everything, don’t think of it as a crutch or anything to be ashamed of. It only makes you special and unique. Thank you all for reading, I hope you enjoyed this tale.

> G. Sosso

Getting a Good Night’s Rest: Autism & Sleep

Ah, the joys of a good night’s sleep. When we’re lying awake in bed at night, we want nothing more than to stay up just a little bit longer. Then as soon as we wake up in the morning, prying ourselves up from bed can be the most difficult thing in the world. Sleep is part of being alive, and it’s something that comes so naturally to many, but for people on the autism spectrum, it can be a constant struggle. This problem seems to be magnified with children. Personally, I’ve had difficulties with sleep bordering on insomnia for a great deal of my life. My family is well aware of how unhealthy my sleeping habits have always been (though in the past year I have improved greatly), and I’m sure that, for many parents out there reading this, it has been a major issue they’ve had to deal with. I want to outline some shocking facts and realities about sleep-related issues when it comes to ASD.

I figured the number would be high, but I have to admit, I didn’t expect it would be this bad. According to Autism Speaks, as much as 80% of children with ASD suffer from poor sleeping. Now here’s the thing: as far as I can tell, there’s nothing particularly unique about the effects of a sleep deficit on those with autism. It can result in increased aggravation, hyperactive behavior, lingering drowsiness, etc. This is consistent for all children. However, the issue is the exponentially higher rate at which these things occur for people with autism. Live Science states that in the neurotypical population, “Studies estimate that between 10 percent and 33 percent of children and 40 percent of adolescents experience sleep problems,” a far cry from the 80% with autism.

So why is this? What causes these issues to be so prevalent in the autism demographic? The truth is, we don’t know. Researchers have never been able to pinpoint an exact reason, though there are theories. These ideas range from decreased melatonin levels at night when they should be higher to aid sleep, to heightened sensitivity to various stimuli which distract from falling asleep, to the high levels of anxiety typically experienced by those with autism, which I have gone into depth with in previous blogs. No matter the root cause, there are fundamental challenges which prevent many from experiencing the proper rest they need to stay healthy.

There has to be some solutions to all this, right? Of course, though patience will most likely be required; there is no quick fix that’s effective. Autism Speaks and WebMD both have some suggestions for parents on maximizing their child’s “sleep efficiency.” These include avoiding any caffeine or sugar, providing a relaxing environment with soft music, dim lights, etc., turning off stimuli such as TV or video games, get melatonin (NOT sleeping pills), have the kid exercise during the day, early afternoon naps, and coming up with a consistent bedtime and wake-up time. That last one, once I finally implemented it after 21 years on this Earth, was the one that finally worked for me. Now I sleep a consistent 7-8 hours on work nights, and 8-9.5 on weekends. Follow those tips, keep at it, and eventually sleep will come as naturally to you or your children as anyone else.

 

 

 

Autism & College

A large number of children growing up with autism have a difficult time thinking about what “comes next.” Because of the difficulties that come naturally with childhood and adolescence, along with the unique challenges presented by ASD, many parents are more focused on simply getting their child through high school, and who knows what comes next. There’s nothing wrong with that, of course, but everyone has to leave the nest sometime. I’ve previously discussed the possibility of jumping straight into the working world, which is a perfectly acceptable path to take. College isn’t for everyone. However, there are many advantages associated with going to college, whether it be for an associate, bachelor’s, master’s or doctoral degree. Currently, I am attending Hillsborough Community College, earning my AA degree, before I transfer to USF for my bachelor’s. I couldn’t be happier with my decision, and I’m proud to say that I know I’m going places; making something of myself. That sense of validation and self-worth is one of the many reasons going to college is a positive thing for those on the spectrum. But there are others as well!

Let’s not beat around the bush here. A college degree makes for a happy and healthy bank account. While it is more than possible to be successful in life without a higher education, the numbers don’t lie. This article paints college in a very favorable light, but I’d like to focus on the chart included herein. The more school you complete, the more you make and the lower your chance for unemployment. And as we see here, the autism demographic has a major unemployment problem, unparalleled in almost any other group out there. If you can find your passion, something you’re talented at and enjoy doing, then go for it and you can make a fulfilling career for yourself. And best of all, you won’t have to worry about financial strain while doing it.

As we all know, however, money can’t buy happiness. Love, family, friends, etc. are the true path to a satisfying life, and one of the most important aspects of that is love for what you do. “Choose a job you love, and you will never have to work a day in your life.” Like it or not, getting a college degree opens up the door for so many different career paths that are unavailable to those without a higher education. Those on the spectrum often have a wide array of quirky and creative interests; luckily, there’s a major/degree out there for just about anything you can think of. Take well-known and outspoken autism advocate Temple Grandin for instance who, according to her Wikipedia page, got her bachelor’s degree in human psychology, and her master’s and doctoral degrees in animal science. Now there’s someone who’s really made something of themselves.

Perhaps most importantly is that, simply put, having a degree correlates strongly to increased happiness. As shown in every source I’ve found, such as this one, a college educated population is a content population, and considering the depression epidemic common throughout the autism community, this can only be a good thing. Personally, ever since I started my journey towards a degree, I’ve been feeling much better about myself, and I’ve never been happier!

_ G. Sosso

Loneliness & Autism

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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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