Florida's First Choice for Autism Support

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Farewell Dr. Berkman

Mixed emotions are in abundance here at CARD-USF. We’ve all known this day would eventually arrive but we didn’t anticipate it coming so fast. It seems like it was yesterday she was whispering the words, “I’m going to retire next year”, yet here we are looking at her last week as Executive Director. To say Dr. Karen Berkman will be missed is a true understatement. Many of us, her included, are so busy preparing and planning that it keeps us from stopping and thinking about the sadness of it all. Which is good, keeps the tears at bay for a while longer. After 16 extraordinary years leading CARD-USF, Karen will set out on a new adventure; retirement. Although we as a group couldn’t be more excited for her, we are sad to see her go.

Karen is the true definition of a leader. She is determined, forthright, and has the ability to inspire those around her. She has pushed us to great heights and constantly nudges us to think bigger, smarter and beyond by asking “what’s next?”. However, at the same time, she is compassionate, understanding and willing to stop at nothing to make sure we have all we need for the overall success of our work.

She has had such an impact on families and individuals on the autism spectrum. Whether it was from creating The Learning Academy for young adults to learn employment skills, to creating the Autism Friendly Business initiative after seeing a need in the community; she has the keen sense of seeing a need and from that creating something amazing. She was instrumental in the development of the Autism Friendly Tampa Initiative along with the City of Tampa and former Mayor, Bob Buckhorn. She served on the Governor’s Autism Task Force to help implement changes to the state. She also brought CARD-USF and HIPPY together for a collaborative effort to assist children with autism with the reading curriculum provided through HIPPY.

She has achieved much success during her time at USF. Her impact here at USF, CARD and throughout our 14 counties reaches far and wide; she has so much to be proud of.

Dr. Berkman, if you’re reading this (which I’m sure you are) I along with the CARD and TLA team will miss you so very much. We will do our very best to continue on with your great work and we will strive to make you proud. Enjoy your retirement and the crisp air of the mountains. You deserve it!

“Don’t cry because it’s over, smile because it happened.”

Sincerely,

Adrian & the CARD/TLA team

The Challenges of an Adult ASD Diagnosis

Receiving the diagnosis of ASD can be many things; scary, surprising, an explanation, a relief, etc. I’ve always viewed it as the first step in the path of overcoming the obstacles you’re inevitably going to face due to the condition. I was diagnosed with Asperger’s syndrome (which is no longer a thing by the way) back when I was 14. That’s pretty late in life, especially when compared to many of my fellow students in the Learning Academy back when I attended in 2014-15. For many of us, the signs have already shown themselves by early childhood, but what happens when they go unnoticed or even ignored for decades? It used to be that adults were essentially never diagnosed with autism, and it was seriously stigmatized. While things have improved at this point, I still feel like autism is viewed as something only young kids experience; that it just goes away once you reach 21. In this piece, I want to discuss the process of diagnosing an adult with ASD is like, and how it feels to receive a diagnosis so late in life.

As I mentioned, autism awareness seems heavily geared towards children. Thankfully, with so many breakthroughs in the psychological fields lately, making early diagnoses is more efficient than ever. However, sometimes people can slip through the cracks, and that’s where the problems begin. Katherine Stavropoulos, a mental health clinician, lays out some of the issues with adult cases. One major reason why clinicians are hesitant to test adults is because of this clause in the DSM-5 regarding ASD: “Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities or may be masked by learned strategies in later life).” Say someone in their 30s wants to receive a diagnosis, it’s no simple task to get a complete rundown of their childhood, especially if they have no close relatives. In addition, many of the testing methods for ASD are geared towards kids and teens, but as of just a few years ago, a new test called the Adult Repetitive Behavior Questionnaire (RBQ-2) was developed, which has seen use as a convenient tool in this regard. Perhaps consider checking it out if you find yourself in a similar situation to what I’m describing.

So what’s it like being diagnosed in your 20s or even beyond? I’ve always been grateful to have received my diagnosis when I did, since I’ve had 10 years to form healthy and effective coping strategies. Imagine being like Samantha Ranaghan, who was 34 when she got diagnosed. Actually, maybe it’s not too hard to imagine, as (despite the age gap) I found everything she talked about in her blog to be incredibly relatable to how I felt. From finally feeling “normal,” to life making sense, people saying “you don’t act like you have autism,” it seemed to be a positive thing in her life. This is just one case of course, but there’s very little out there of adults talking about their diagnosis. While everyone deserves a proper evaluation, I can’t help but feel adult ASD diagnoses will only become rarer in the future as we get better and better at detecting it from a young age.

Pets for Children with Autism

Pets for Children on the Autism Spectrum

I, like presumably 99% of us, love animals. For most of my life I’ve had a dog in my house, and I even have experience with guinea pigs and parakeets. Our friend Erica King, who I interviewed a few weeks ago about her success as a playwright, even has a couple of hedgehogs! My point is, pets can be an important part of the family, and for children on the autism spectrum, they can be a great source of companionship and socialization in a world where those things may be difficult. There are a lot of benefits to pet ownership by itself, but from what I’ve discovered, it can really help children with ASD who are struggling to better cope with life and all its trappings. So please join me as I briefly discuss our favorite furry friends!

So the main pet that I’d like to focus on for this piece is dogs, as they’re by far the most common pet to own and the one with information the most readily available. But this can very easily apply to cats, birds and yes, even hedgehogs. There’s a surprisingly large amount of research to suggest that owning a pet can do wonders for a child with autism’s social skills. The rate at which ASD children bond with dogs in particular is extremely high. A recent study indicated that a majority of families with members who are on the spectrum own a dog, and that 94% of those children had formed a deep connection with their pet. That’s sweet and all, but that same study, as well as ones similar to it, also delves into some very interesting facts. For example, children who are brought up with a family pet have been shown to possess comparatively above average social skills, and that children with autism will showcase a temporary increase in social capacity after a productive play session with a pet, such as a guinea pig.

But while a positive connection to socialization is great, there are other ways in which dogs are helping kids on the spectrum. Some training dogs are being specially tailored to suit this demographic, and I’m delighted to see the things they’re helping our kids out with. I found an organization called Dogs for Good, who trains dogs for children with all manner of disabilities. Their dogs help kids on the spectrum with road safety, reducing family stress, sensory support, overcoming fears, and a whole host of other things. So if you’re a parent whose child may be struggling and you don’t have a pet, perhaps consider it. It can be a worthwhile endeavor, not only for the child but the whole family as well!

Thoughts on “Atypical”

Recently I decided to give the Netflix original series “Atypical” a try, and my expectations were blown away. Starring Keir Gilchrist, the show follows Sam Gardner, an 18-year-old boy with autism, as he searches for love, acceptance, and a purpose in life. There is also a lot of focus on his family and their trials and tribulations, but for this piece I mostly want to focus on Sam and his characterization. I’ve had my issues in the past with the “Hollywood autistic” as I call it; where most people on the spectrum are typically portrayed as either some savant genius with no ability to socialize, or completely incompetent. Sam strikes a really great balance in being a realistic depiction, and I found myself relating to him on several occasions. This is a comedy series, so some things naturally are a bit exaggerated, and I enjoyed those moments, but for the most part I found Sam to be my favorite character with autism I’ve seen in a long time, if not ever.

I won’t get too deep into spoiler territory, as I highly recommend the series to anyone reading this, but I do want to cover some of the basics. The story starts off with Sam’s quest to find a girlfriend, which right off the bat I think was perfect. I’ve written before about the struggles of those on the spectrum to find meaningful relationships, and they captured the struggle really well. Eventually, that plot point gets somewhat pushed to the side in favor of discovering who he is, what he’s passionate about, what he wants to do going forward in his life, and (very importantly) how he’s going to live independently, as he’s always been with his family. Once again, I’ve written about these very things before and the challenges they bring with them.

Now I looked it up, and Robia Rashid, the show runner, is not on the spectrum, but I could’ve sworn she was due to how relatable many of these situations were. Sam’s often blunt nature which takes some getting used to, the sensory problems that can manifest in unpleasant ways, his ability to “hyper focus” on something he’s really interested in, and a brutal lack of care for that which does not. And the actor who portrays Sam, despite being neurotypical himself, does a fantastic job of showing a lot of little intricacies. As I said before, I highly recommend this show to anyone looking for an emotional yet entertaining ride, complete with a great cast of characters, one of whom happens to be an individual with autism done right.

Stress and Depression in Autism

Today I would like to tackle a darker topic, but one that I find to be incredibly important. It’s a subject that needs to be addressed in our society at large, but I want to focus on it in the realm of autism, because I’ve noticed it to a concerning degree, both from personal experience as well as observation. I’m talking about stress and depression. I’m grouping the 2 together as, in my opinion, they essentially go hand-in-hand. There are many things which cause us to feel stress in our daily lives, and for those on the autism spectrum, it can easily spiral down into a dark place of depression. Things such as an overabundance of stimuli, things not going our way at school and/or work, difficulty in our social lives, facing some level of discrimination, etc. Because of the challenges presented to us by ASD, overcoming these obstacles, keeping on the right track and steering clear of the trappings of stress/depression can be very difficult. I’ve dealt with these issues extensively over the course of my life and, while I’ve certainly recovered a great deal from the depression, I continue to struggle with constant stress and anxiety to this day. I would like to further address this topic with some of the information I learned through my research.

Now I should specify, because I’ve noticed that nowadays depression is very often misunderstood. It’s not just feeling down on yourself for a couple days. It’s a prolonged feeling of extreme sadness and hopelessness, characterized by a lack of ambition, pessimism about the future, and feeling very alone. For individuals with autism, the effects can be even worse, with some reporting “a loss of previously learned skills, greater difficulty carrying out everyday tasks, and at worst, suicide.” The findings I came to on this topic were staggering. I knew there was a problem, but I almost wasn’t expecting the severity. According to a study by Springer, nearly half of all people with autism will experience clinical depression at some point in their lives. And that’s not all it mentioned, it goes pretty in-depth into how there is a serious risk factor for those with autism, and much of it stems from our susceptibility to stress. Another thing I found morbidly interesting was that the depression rate seems highest in those with greater intelligence, and since many with autism are exceptionally gifted, you can see how there’s a vicious cycle here.

There truly needs to be more awareness on this issue. Not just for those on the autism spectrum, but for the general population. The reason I wanted to bring light to this crisis, besides personal experience, is because of the disproportionate rate at which it affects those in the autism community. I’m sure for many parents out there, either your loved one has dealt with extreme stress/depression, or maybe even you have when things got particularly rough. Just know that you’re not alone and there are always people who care about you.

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!

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!

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