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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

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Loneliness & Autism

Image result for lonely picture

 

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

Having a Sibling with Autism

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“Don’t walk behind me; I may not lead. Don’t walk in front of me; I may not follow. Just walk beside me and be my friend.” – Albert Camus

Admittedly, having a sibling on the autism spectrum can be stressful at times, especially if the two of you are close in age. Growing up, it’s unlikely you’ll receive the same attention from your parents that they do. That is, of course, nobody’s fault, but for a young mind it can be hard to comprehend why your brother or sister is getting more attention than you. There’s also the unavoidable issue that if you’re not used to the behavior, dealing with someone (especially a child) with autism can be difficult. Many are prone to outbursts or tantrums, can’t fully understand social cues, don’t take an interest in a wide variety of activities, etc. But there’s so much more to it than that. There are few things more beautiful than the bond between siblings, and just because yours may have ASD doesn’t mean you can’t form that special relationship. Here are some of the unique advantages to having a sibling with autism; hopefully after reading this, you will gain a greater appreciation for your sibling.

First of all, you will gain a unique perspective of the world vicariously through your sibling. Kids on the autism spectrum almost always have a different outlook on life, and see the world in a unique, individual way, totally outside the norm. As the sibling without autism, you will learn very early on that the world is in no way black and white. There is no absolute binary on how things can be done, but rather, just like autism, there is a whole spectrum of possibilities. With good parental guidance, you will come to learn that individuality is something to be cherished and valued, not shunned. From your experiences dealing with an autistic sibling, you will go into adult life with an open mind and the ability to see the world from multiple viewpoints. Not only does this shape an individual with compassion, empathy, and acceptance of differences, but it also inspires innovation and creativity.

This brings me to my next point: creativity. One of the few universal traits of ASD is a difficulty in communication skills. But siblings, as I mentioned before, have a special and unique bond that allows them to understand each other on an entirely different level, autism or not. Considering the uniqueness with which those on the spectrum see the world, often being very creative, that rubs off on the other sibling. Simply having that connection exist and gaining firsthand exposure to such an exceptional worldview opens the mind to new creative potential. Desires to express oneself through music, visual design, writing or the arts can manifest in grow for both siblings, creating a symbiotic relationship.

The last point I want to talk about is how it can make you a far more accepting, compassionate person. Like I pointed out, having a sibling with autism can be a difficult thing, and their behaviors erratic at best. However, I believe this also presents an opportunity to grow into a better sibling and thus a better person overall. Growing up, you naturally come to know your siblings better than anyone else, and how to deal with all their little nuances. Dealing with the worst behaviors autism has to offer all throughout your formative years molds a person into someone who can empathize with just about anyone, and I believe you become all the better for it.

I would like to recommend this blog from Autism Speaks, from the perspective of a young lady whose brother has autism. It’s a great insight into everything I’ve been talking about, and I enjoyed reading it immensely.

  • G. Sosso

Father’s Day

Father’s Day is coming up and I wanted to devote this blog to all the wonderful fathers out there! Earlier this month, I got to visit with local autism dad Olando Rivera, former champion kick boxer and owner of the B.A. Warrior gym here in Tampa. If you’d like to read about my visit and get some great input from a primary source, please feel free to check out here.

It’s no real secret that compared to mothers, fathers don’t receive nearly the same amount of appreciation for what they do. To be fair, there are (mostly cultural) reasons for this. With many families in America, the dad is out working most of the day while the mom stays home and raises the kids. There is no study to support the claim that women naturally have more compassion than men do, though according to this article, women express compassion more often through “nurturing and bonding behaviors,” which is advantageous when taking care of a child with autism. Like most things, however, these are just generalizations, and not always the case. There’s a national trend lately that’s seeing more and more dads act as the primary caregivers in the household. Pew Research reported in June 2014 that at least 2 million men are stay at home dads in the US alone  and that number has surely risen since then. So the men are there, and they’re not going anywhere! And this is in no way meant to marginalize the impact or importance of moms; quite the opposite in fact. The mom is the wheel that keeps the whole family spinning, and without them we’d all be lost. This is more about giving thanks to the dads out there, who are just as important and should be respected as such!

To all the moms out there: please, encourage your husband to take a more proactive role in your child’s life. If you read what Olando had to say, follow that advice. His bond with his son is so strong because he got involved, broke down that barrier that so many kids on the spectrum erect, and both father and son are stronger for it. Ultimately though, it’s up to the dads to take that big step. Olando had a great quote: “There’s nothing you can do to change your situation, other than change your situation.” This is very true. A very similar thing happened to my own dad a few years ago. Before I got my diagnosis, my relationship with him was rocky. Not terrible, but we never really connected all that well. After the diagnosis, and after seeing a family therapist, he completely turned things around; he “changed his situation.” Now he and I have a wonderful relationship and I love him dearly. Its stories like Olando’s and hopefully even my own that we’re trying to create more of here at CARD, by raising awareness leading up to Father’s Day.

This Father’s Day, remember to give your dad a big hug, maybe get him a little gift, and most importantly, let him know how much you love and appreciate him!

  • G. Sosso

Editorial: Role of Fathers in Children with Autism

I want to highlight the importance dads play in raising a child on the spectrum. This is not meant to understate the significance of moms, but simply to give fair representation on both sides of the parenting duo. Perhaps if we in the community start giving them the recognition they deserve, more dads will be motivated to get more involved with their kids’ development. This is something we feel very strongly about, and something we feel needs more attention!

Ever since I was diagnosed with ASD at age 15, I’ve noticed the severe lack of not only father, but male involvement in the autism community as a whole. Why is that? Many researchers in recent years have noted the under representation of fathers in both psychological and sociological child-parent studies. They almost exclusively focus on the mothers, which can be seen as devaluing the paternal role. Some believe that this leads to a sort of self-fulfilling prophecy, where the dads believe they’re not as important in their children’s lives, and as such, it becomes an unfortunate reality.

So what exactly is the role of fathers of those on the spectrum? The answer is quite simple, in theory; it’s the exact same as that of the mother. Reality, however, paints quite a different picture. From what I’ve gathered (and I quite agree with this), many believe that it comes from the pre-conceived cultural notion that the mother has to be the more caring, loving and emotional parent, while the father is seen as the cool, detached disciplinarian. Many dads are also more prone to wanting their kid to be a certain way; i.e. have similar interests and careers when they grow up.

With a child on the spectrum, you can see why this would be an issue. Kids with ASD need that extra parental devotion, since it’s difficult for them in their prepubescent and adolescent lives to develop along the same lines as the general populace without said support. The truth is that mothers in our culture are simply more inclined to do so, while many fathers believe they’re not up to the task, and that they’ve “failed” somehow. The culmination of this is the majority of the time, the kid grows more attached to the mom, ultimately resulting in the widespread belief that moms are better fit to raise their child with ASD.

So now that we know what the current state of fathers is (for many, not all), what can we do to fix it? We can spread the word of course! Showcase the wonderful contributions dads have made to the community, highlight those dads who have gone above and beyond to make a difference in their child’s life, and try to persuade those who are unsure that they are just as important as their wife is.

  • G. Sosso

***Update: Shortly after this blog was posted an article was released about a study done regarding dads’ involvement.

Study: Dads’ Involvement Key For Families Affected By ASD

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