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Reconsidering Neurodiversity

Here at CARD, our mission is and always will be to promote good relations between those on the autism spectrum and the general public, be it in the workplace, the community, at school, or even within the family unit. We believe it is imperative that people of all abilities throughout the Tampa Bay area are treated equally and fairly, and are never impeded from living their lives because of something they can’t control. While I’m sure everyone in the special needs community (and most people in general) believe in helping individuals who require it, there is some debate over the concept of “neurodiversity,” which is defined as “an approach to learning and mental health that argues diverse neurological conditions are the result of normal variations in the human genome.” Basically, if you’re a believer in neurodiversity, then you wouldn’t really view mental disabilities as disabilities at all, just quirks that can be worked on and managed with a few key strategies. Before doing my research for this post, I never even really questioned the validity of neurodiversity, but it’s definitely gotten me to question things a bit more.

I don’t believe it’s fair to argue for or against something without at least providing the counterargument which, in the case of neurodiversity, is that mental disabilities such as ASD, schizophrenia, ADHD, etc. are socially constructed and exist naturally as a part of the neural spectrum. Proponents argue that due to the lack of understanding of how the brain works, coupled with considerable doubts regarding the field of psychiatry, it can’t be proven that there’s anything “wrong with” and autistic or schizophrenic brain. As with many others, I’m not an expert on this topic, but this is their argument put as simply as I can.

As I outlined in the case for neurodiversity, there is a significant lack of hard evidence in neuroscience. The brain is not widely understood like other parts of the body, and as far as I can tell, this fact is acknowledged by the dissenters of neurodiversity. The 2 main critiques I found which I agreed with the most came from Psychology Today, and they were: while it is a noble goal to help people with these conditions, it’s absurd and even harmful to treat them as something desirable; and that all “medical diseases—not just psychiatric disease—rests on a subjective determination about what constitutes abnormality,” and it’s up to the professionals to make those determinations. While the goal is to de-stigmatize mental disabilities, the anti- crowd argues that neurodiversity proponents are doing the opposite. If these conditions are seen as totally normal, then why would there be a push to invest in treatment? It makes sense when you think of it that way.

I’ve lived with ASD my entire life, and here’s my viewpoint. I’m not ashamed of who I am or what I have, and I’ve worked through a lot. However, I don’t think autism should necessarily be “glamorized.” It does provide some benefits, but there are plenty of handicaps as well, and I’ve now come to seriously doubt neurodiversity.

-G. Sosso

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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 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 & Dating

Couple_01

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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