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Posts tagged ‘Autism’

Making Tampa Bay Autism Friendly

If you’re reading this, I’m going to assume you either live in the greater Tampa area, close to it, or have some connection to the city. As previously mentioned, I’ve had the great honor and distinction of being a part of the City of Tampa Autism Board in an advisory role. Our mission is to, little by little, transform Tampa into a place where individuals all across the autism spectrum can feel safe, secure and welcomed. The mayor has been incredibly receptive to the initiative, as have many of the prominent institutions around the city, such as the Glazer Children’s Museum who will be hosting this year’s Fiesta by the Bay for Autism. I’d like to talk about some of the efforts being taken around the city, as well as some small things the average person can do to make Tampa a more accepting place to people of all abilities.

Besides the support from the mayor himself, we’ve received support from so many places across the city. It’s no simple task covering a major urban area, but we believe we’ll get to every business one day. The Tampa Police Department has already integrated our teachings (which I starred in!) into their officer’s training, and the paramedics will now be carrying around cards, which people with autism can use to point out what is wrong without having to speak. The Tampa Bay Buccaneers have featured CARD on the big screen at their games, and the Tampa Bay Lightning just had an Autism Awareness Night at a recent, very important game (I would have gone myself, but I can’t go betraying my Penguins like that). Glazer Children’s Museum and the Florida Aquarium are among the family-friendly locations around the Tampa area who have embraced our mission, and we have meaningful connections with WEDU, the local PBS branch. As a side note, make sure to check out Sesame Street, which has autism representation in the form of Julia, a friend of Elmo. These are just some of the larger, more recognizable groups involved with Autism Friendly, we have many more and the number will continue to grow. If you’d like to know more, check out the recent article I wrote for Tampa Parenting Magazine. My article is on page 17.

Every individual can make a difference. If your place of work is within the Tampa Bay area, please feel free to contact Dr. Karen Berkman at KBerkman@usf.edu or by phone at 813-974-4033. It’s completely free and is almost guaranteed to be a boon for your business. Plus, you’re doing a great thing for an entire group of people. But there’s an even smaller scale we can all work on. If you come across someone who you believe may have autism, be it in your place of work or just out in public and they’re struggling, be there for them in a supporting role. That doesn’t necessarily mean go and do everything for them; most won’t need it anyway. Rather, just be ready to offer a helping hand, and be patient with them. Be a friend, and they will be grateful, even if they can’t fully express it.

G. Sosso

 

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Autism & Dating

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I’ve been meaning to cover this for a while but, being the genius that I am, didn’t actually get around to it until AFTER Valentine’s Day. Romance is a tricky subject for anyone, and by no means am I qualified to talk about the intricacies of dating. However, I can give some insight on the topic from the perspective of someone on the autism spectrum. Familial and friendly bonds can be scary and/or difficult for people with ASD, let alone being in a relationship, but that doesn’t mean its something we don’t desire or can’t achieve. In this piece, I’d like to focus on what the experience of dating someone with autism is like, as opposed to a standard dating guide which you can find plenty of!

So, what is it like to be with someone on the spectrum? It’s certainly a bit different, but in which ways? I pooled together my own ideas, as well as a few different sources, to give a general idea. I believe one of the most important aspects is that just because we may not know exactly how to express our feelings, doesn’t mean that they don’t exist and that they’re not strong. Make the extra effort to work with us through our feelings and we’ll reward you with all the love and affection in the world. There are several other minor considerations to make when dating someone on the spectrum, such as a lack of eye contact, shying away from anything physical (at least at first), not picking up on sarcasm as well, and not wanting to go out to typical date locations.

I actually interviewed a friend of mine who’s dating a guy on the spectrum. I asked her some of the first questions that came to my own mind, and here’s what she said.

  1. Q: Being honest, have you ever looked at your partner differently because they were on the autism spectrum?

A: Yes, but in a good way. I see my partner as someone who is extremely organized, smart, extremely caring, and someone who has his little quirks that I love so much.

  1. Q: What, if any, are some of the unique challenges presented when dating someone with autism?

A: A challenge that I’ve personally faced is trying to understand the difference between the silences. It’s hard for me to understand if my partner is silent because he’s mad, or just zoning out, or something completely different. Another challenge is making sure to remember the sensory issues that he has, but I am getting much better and I love learning about him.

  1. Q: Do you need to put in any extra effort in dating someone with autism as opposed to someone without? If so, is that something you’re okay with or is it straining?

A: Personally, I think you have to put effort into every type of relationship, regardless if someone is on the spectrum or not. I do agree that it calls for more effort because in my experience, people on the spectrum are used to a certain routine and it is different to not only see that routine but to become a part of it/add new things. This is definitely something I’m okay with. I have been around people on the spectrum my entire life and now that I’m dating someone on it, I really wouldn’t want it any other way. I love learning about him and I think he is perfect just the way he is. I know I have SO much more to learn, and honestly, I can’t wait!

 

> G. Sosso

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

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.

 

 

 

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