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Posts tagged ‘family’

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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Having a Sibling with Autism

kids-walking-image

“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

Technology & Autism

It’s no secret that technology has completely changed the face of society, especially in the boom of the past 20 years or so. We have things like smart phones, tablets, notebooks, smart watches, etc. which have made things so much easier for all of us. But how does this affect those on the autism spectrum? In what ways can we utilize this new amazing technology to improve life for people with autism and their families? It can act as either a learning tool or a great source of entertainment depending on the context.

Perhaps the most prevalent use of technology in regards to people on the spectrum is that of “assistive technology.” The Technology-Related Assistance for Individuals with Disabilities Act of 1988 describes assistive technology as “any item, piece of equipment, or product system, whether acquired commercially, off-the-shelf, modified or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities,” in this case autism. One good example I can think of is an app that one of my mom’s good friends uses with her son called “First-Then Visual Schedule.” Oftentimes visual learning is the primary method for those with autism, and this $10 app helps present a visually stimulating schedule that will help people keep better track of their lives. This is just one example, there are many more out there that do a myriad of different things; here’s a convenient list on parenting.com that features 11 apps including the aforementioned First-Then Visual Schedule.

Technology is not confined to the assistive variety, in fact many use it as a way to stave off boredom. It’s no secret that children with autism particularly love video games, as they talk about here, and with the rise of casual gaming brought about by tablets, there’s a never-ending supply of fun to be had. While tech addiction is a real thing and should be avoided, sometimes as a parent you just need some time to yourself. One of the best ways to keep your children occupied is to get your kid a video game system, or even just an iPad with Candy Crush, Crossy Road or Angry Birds, and they can keep themselves busy for hours at a time. Trust me, I speak from 21+ years of experience.

One interesting thing I would like to highlight is this little gem: Project EVO. It’s a therapeutic tablet game made specifically for kids with autism. Here’s what CBS said about Project EVO: “As they [the kids] go through the game they are supposed to skirt around certain objects while choosing others. The idea is to condition the brain to sift through and organize information in real time, requiring a player to stay focused on the task at hand.” It’s a very interesting concept. The game has not yet been released, but I look forward to tracking its progress.

 

  • G. Sosso

Guest Blog: “Interfere with her”

These were the final words of advice from the child psychologist who diagnosed my daughter with ASD over 23 years ago. At the time, I understood neither why this was so important, nor how to do it.
As I read books and articles, connected with community service agencies, therapists, and most importantly with CARD, the picture slowly began to emerge.
Left to her own devices, my daughter would quickly develop rigid habits, obsessive rituals, and limited interests. It became important to offer her alternative opportunities and experiences, although each new experience often led to yet another expectation, habit or ritual. But at least they were expanding, right?
The research literature years ago was more focused on interventions than it is today. These days, most research dollars are aimed at understanding genetic and environmental causal factors for ASD, and thus possibly identifying biomedical treatments for the core symptoms. To date, though more and more physicians are prescribing medications for children and adults with ASD, none successfully address the core symptoms of communication/social skills and restricted and repetitive interests and behaviors. Most medications simply attempt to address non-core symptoms such as anxiety, aggression, depression and OCD.
As for interventions, most researchers are satisfied that methods based in various forms of applied behavior analysis are considered the most effective. Other interventions based in relationship development, cognitive behavior therapy and mindfulness are among those considered emerging, promising, or even sufficiently evidence-based to be recommended by referring professionals.
As a parent, I tried to identify what all the numerous types of interventions had in common, and the one thing I kept thinking of was the psychologist’s words to me as I was on the way out the door: “Interfere with her.” These interventions all, one way or another, attempt to draw individuals with ASD away from habitually limited patterns of thought and behavior, and expand, or generalize, new skills into more socially- and community-based interactions.
So…how do we do that, as parents, when our children can’t be in therapy every waking hour of the day, and most of us cannot afford the maximum recommended amounts of interventions suggested by research?
Some interference occurs naturally, through regular family activities such as worship services, or when children reach an age of eligibility for school services, whether that is at age 3 or 5.
Entering new environments such as school, therapy, or community-based athletic, recreational, or arts classes, can be problematic and stressful. However, if the transition to a new environment is handled according to the child’s need for information through social experience stories or other visual supports, most children with ASD adapt well and come to anticipate the regularity of the new environment. Rules and expectations for each setting may be contextually-specific, but are usually readily accepted by our children, once they successfully comprehend what is being asked of them. The importance of this step cannot be overemphasized.
Other ways of interfering may take place in the family context at home or in the community by deliberately adding activities to a wall calendar or posting flyers of upcoming fairs, football, baseball or hockey games, concerts, or even unique community events such as the recent “Light it Up Tampa”. Each event or activity is a great opportunity to expose children to new environments with new sets of rules, expectations, and perhaps even inspiration.
Just be aware, this may create dozens of new expectations for events that occur weekly, monthly, or annually. In our family, each season is replete with events my daughter anticipates months ahead of time, and we are a very busy family, especially during fair and festival season.
However a family chooses to “interfere”, one thing I have learned is that the gentler that interference can be, the better and more effective. Roughly pulling a child away from a session of lined-up cars or recital of lines from his favorite Disney movies will create resistance without adding a new skill or motivation to divert his attention. Supporting a shift through advance awareness and rewards, which can be faded as the experience itself becomes more reinforcing has worked well for us.
Having said that, the tendency to engage in rigid, limited or ritualized behaviors is still present, but the people who work with my daughter who understand her need to be gently mentored and guided into new areas of experience are still the most successful, and she seems so much happier for it.

Jean

anna clay

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