Florida's First Choice for Autism Support

Posts tagged ‘CARD USF’

Autism and Speech Language Pathology

It’s no secret that for many on the autism spectrum, the development of linguistics and/or speech can be stunted. This is commonly regarded as one of the defining traits of “low-functioning autism,” where problems more severe than social difficulties can manifest themselves. I’m incredibly fortunate to have never had to deal with any of these particular issues, even excelling in the language department, but others are not so lucky. In my work here at CARD and PEPSA, I’ve done a lot of editing work for various teachers around the state, and one of the common professions I kept coming across were “speech-language pathologists” (SLPs). In truth, I had never heard of that term before, and so for this piece I decided to look more into them and their relationship to ASD. After doing some research, I’ve concluded that SLPs can be lifesavers when trying to help out low-functioning people with autism, particularly children.

So, what exactly is a speech-language pathologist? According to accredited SLPs Gail Richard and Donna Murray, “The speech-language pathologist’s most-familiar role involves helping someone produce speech – making sounds, speaking words, improving articulation (intelligibility) and so on. But speech-language pathologists do so much more. They also help with the language skill of putting words together to communicate ideas – either verbally or in reading and writing.” And, perhaps most importantly, they even help articulate social communication skills. Already you can begin to see why these SLPs are so sought after in the autism community. I’ve noticed through my editing work that having a background in speech-language pathology is a huge plus when it comes to being a special needs teacher, as are many who have partnered with PEPSA all throughout Florida.

Unfortunately, I’m no expert on the subject myself and as I’ve mentioned, I never attended a session with an SLP, so I can’t get into the nitty-gritty of what exactly they do or the methods they employ. There’s plenty of independent research you can do if you’re really interested. However, I would like to discuss one of the activities they utilize that I am familiar with, so if something like this interests you, perhaps consider contacting an SLP for your own child. If you’ve never heard of the Picture Exchange Communication System (PECS), you’ve probably at least seen an example of it before. They’re those cute little picture charts that speech-impaired people often use. The Tampa Police Department even started using them recently to serve their ASD community members thanks to the efforts of CARD! SLPs use them to teach basic communication skills, and to develop an understanding of language before delving into the actual use of language. There’s so much more that these amazing people do, but it would take an extremely long time to get into it all.

There might not be any other profession that seems more geared towards serving individuals with autism than SLPs, and I can certainly appreciate the work they do. If this seems like something helpful, there are plenty of them in the Tampa area alone, they’re all just a google search away!

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Autism Across the World

As I’ve discussed many times, the rate of autism and the manner in which we address it has changed drastically throughout the 20th century and up until today. But some may forget that every year on April 2nd, we celebrate World Autism Awareness Day. Sometimes as Americans we tend to forget that there’s a whole wide world out there (I say this as affectionately as possible). And as someone whose top interests include history, international affairs, different cultures, and just generally learning about the world, I was curious as to how other countries view autism, and how prevalent it is. In my research, I discovered some very interesting trends that I would like to share with you all.

One recurring theme is that autism seems to be most common, or at least more widely diagnosed, in developed nations such as Japan, the UK, the US, Sweden, Hong Kong, etc. The data I pulled from here is consistent with every other source I found on the subject. Western Europe, North America and East Asia seem to have the highest rates of autism in the world, and a lot of that is most likely similar to what we see in the US: better awareness by advocacy groups, a more accepting social climate, and improved methods of diagnosis. Japan always seems to come in at number 1, while the US ranks anywhere between 5 and 3. The other interesting thing I found was the complete lack of autism prevalence in places like Africa and the Middle East. These areas are generally more poverty-stricken and less accepting to people’s differences, so it comes as little surprise that autism is not focused on in these places.

Speaking of, how do some other cultures view autism? Well, from what I can tell, across most of Western Europe, Australia, Canada, etc. it’s much the same as in the US, with improvements every year. However, in some places, there’s a more nuanced view of autism. For example, in South Korea, they have a phrase for autism: “chapae.” It is considered a “genetic mark of shame on the entire family, and a major obstacle to all of their children’s chances of finding suitable spouses,” and the stigma can become such a problem that Korean clinicians will intentionally misdiagnose their patients as having something else entirely. That is astounding to me that something like that is going on in such an advanced nation. Even here in America we see a different take on ASD in the Hispanic communities. Even adjusted for socioeconomic factors, rates of autism are lower in the Hispanic demographic than any other in America. It’s theorized that traits of autism can affect one’s reproductive chances.

I find it so interesting how autism is viewed so differently around the world, and how culture shapes that view so intensely. Personally, I’m glad to have it here in the US, where people are widely accepting and there are so many great resources available.

  • G. Sosso

Autism Rates Continue to Rise

The number we’ve all become accustomed to regarding the rate at which autism occurs is 1 in 68. The 1 in 68 figure held firm over the span of 4 years from 2010 to 2014. However, the latest report from the CDC (which comes out every two years and observes 8 year old children) shows a 15% increase in prevalence from 2014, and the figure has now moved up to 1 in 59. This, to me, is the most fascinating thing out of all the myriad of subjects I’ve researched regarding autism. What is going on exactly, and why does the amount of people being diagnosed with ASD continue to rise?

The answer almost certainly has to do with a heightened awareness to the condition and improvements in how we diagnose it. With that in mind, I imagine the 1 in 59 will shrink even further by the time I’ve graduated college and moved onto adulthood. However, there is one slight concern I have concerning the rapidly increasing number of diagnoses. As this article discusses, as we trend more towards diagnosing children at a younger age, we risk muddying the waters between genuine autism and other disabilities, or even standard neurodevelopmental setbacks. Once the autism label is applied, the consequences of that will stick with the individual for the rest of their lives.

The last thing I want is for anyone to receive an incorrect diagnosis. Obviously, I’m not a practicing psychologist, and I wouldn’t know the first thing about how to diagnose someone as being on the spectrum, unless they were severely low-functioning. I don’t doubt the ability or credibility of any professional, but I worry we’re becoming somewhat trigger happy with the ASD label. It simply does not seem right to me from a skeptical viewpoint for such rapid changes in such a short time as we see here. Especially considering that autism is not a transmittable disease like the common cold. I couldn’t be happier that preventative measures are better now than ever regarding ASD, but we need to be careful that we don’t start assuming that 1 in 2 or 3 have it.

From what I’ve read, it seems like the 1 in 59 will not be here to stay for very long. As the criteria for diagnosis broadens, and the amount of parents checking their children for ASD grows along with general awareness, I predict that by 2020 we’ll see it somewhere in the ballpark of 1 in 52 or 53. No matter what the prevalence truly is, groups like CARD will always be out there to support them and provide them with any help they need!

  • Gage

Autism & Religion

For millions of families around the world, religion plays an extremely important role in their lives. Entire societies have been formed based on a common belief in God or gods. Here in America, Sunday is an important day for many churchgoers, and the diversity of belief found here is unlike any other in the world. But what exactly is the relationship between religiosity and autism, if there’s one at all? While I would describe myself as spiritual, the majority of those I’ve met on the spectrum were not of that inclination? Among the ASD community, what exactly is the consensus?

Surprisingly, this was one of the most one-sided topics I’ve ever researched. Every source I found seems to point to there being a connection between autism and lack of religious belief. In this study, Catherine Caldwell-Harris – a psychology professor at Boston University, paints a pretty clear picture. One further study only further enhanced these findings, as it was discovered that those with autism were only 11% as likely as their neuro-typical counterparts to believe strongly in a God. People on the autism spectrum are not only more likely than average to be agnostic or atheist, but are more likely to reject organized religion if favor of their own personalized belief systems. That’s actually how I’d describe myself, so these findings definitely clicked with me.

But why exactly is this the case? The answer is actually simpler than you’d think. For hundreds of years, there’s been a strong divide between religion and science. The more logical and rational-minded you are, the lower your inclination towards faith. This relates to people on the autism spectrum, as it’s a well-known fact (which I have discussed in previous blogs) that we’re often logical, fact-based, straightforward thinkers who need to see evidence in front of us before we’ll believe anything. An excerpt from this article summarizes it quite well: “I recalled what Simon Baron-Cohen and others have written about autistic people’s tendency to systematize and our love of routine, rationality, and logic. All that makes sense, and I can see how a strongly rational person would reject religious dogma if it does not seem logical.”

Obviously, none of this is universal, as with most topics related to ASD. While it is true that those on the spectrum have a higher chance of being atheist/agnostic, it’s not a foregone conclusion. I know how important going to church, synagogue or mosque is for a lot of families out there, and if you have a child on the spectrum who makes going to service difficult, there are resources available. CARD-USF has their own resource for this topic; View it here.

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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

 

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

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.

 

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