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In Their Own Words – A Tale of Two Cities: Trials and Tribulations

August 5, 2010 4 comments

This “In Their Own Words” essay is written by Kate Marts, an adult who has Asperger Syndrome.

Living with Asperger Syndrome and peripheral neuropathy isn’t easy; however, I somehow naturally deal with it. When I was eight years old, I was diagnosed with acute lymphocytic leukemia (ALL). At that time, “Asperger Syndrome” was not even translated into English; as a result my diagnosis was ADHD. Post treatment, I was the social kid who was a bit awkward functioning wise who had a love for people. I was an innocent 10 year old just like every other kid; however the fact that I had ALL would back me up in life time and time again. How my life would play out the next 20 years, no one could ever fathom.

I found out what it’s like to be a fighter at a young age. I didn’t like treatment but I understood it was keeping me alive. The chemotherapy left me with lasting side effects later in life. By age 10, I was a full blown fighter. More so than when I was diagnosed. I had fought two years of treatment, and stares from other kids; I attempted to remain a member of my sports teams (softball and tennis), and changed schools from public to private. I also became impulsive and was a walking chatterbox. I was so hyper I don’t know how my teachers managed to keep me in my desk. I look back and it seems like I was born to get knocked around in the ring.

I spent most of my childhood playing in the neighborhood, chasing bugs and snakes, and hitting home runs. One could never know what I had been through. Not even the savviest doctors throughout my life could pick up on any lasting effects. I rolled through junior high and high school still not letting an ounce of what happened in my childhood faze me, despite the fact that I had very few friends who were loyal to me. After junior high, we moved to eastern Nassau County, Long Island and shortly after, more “social” symptoms started to show. I became more awkward and random, in addition to the fact I just didn’t quite get how to socialize with teenagers. To make matters more difficult, my motor skills started to deteriorate, thus I forgot how to play sports. Sports kept me out of trouble. I hung out with the mischievous kids who were your typical 90’s teens. We got into trouble but never anything significant. When the millennium came and it was time for me to graduate high school, I wasn’t even excited.

Years passed after high school. Life had completely changed. My social symptoms were getting worse and I was beginning to get sensory symptoms that would paralyze me. I had a million bad habits to ease the sensory issues and restlessness. All the while, I had no idea what was going on. I was unable to finish my classes and subsequently had to fold my endeavors in college. I returned home to Long Island after spending a few years in Providence. I spent some time working at the Huntington Townhouse before landing a job as a CSR in an insurance agency. It was my lucky break. I learned how to use the traits I had from having Asperger Syndrome to my advantage. High attention to detail was very important in the type of position I held. Sadly, I was only able to work there for a year due to my father’s retirement. New York was too expensive to live on my own; against my desires I moved to Georgia for a bit until I finally decided to return to New York a few months later.

My job, a CSR in a small insurance agency, lasted six months. The stock and housing markets crashed, both of which my industry depended on. I searched for a new job but ultimately failed. My symptoms from Asperger Syndrome were worsening, in addition to the fact that I started getting electric shocks. My whole body was attacking me and I couldn’t communicate to anyone what was wrong. I landed in a hospital for two weeks with exhaustion, and ultimately moved back to Georgia upon discharge. I lived on for another year. I finally got a “break” – one of my legs I had broken in New York the year before suddenly became paralyzed. I had a strange case with spasticity and tremors in addition to everything else. As a result I had to be patient. After two years of social symptoms accompanied with sensory symptoms and neuropathic pain, I finally had answers I had been searching for, for so long. That November I was diagnosed with Asperger Syndrome. In addition to the fact, I was diagnosed with peripheral neuropathy a year to the date my leg became paralyzed.

I’m fortunate enough that the fighter in me never left; she just became dormant in a disease that I nearly lost my life to. I even learned a few things along the way while living in New York. The first thing I learned was from “A Bronx Tale” – “The saddest thing in the world is wasted talent.” The next thing I picked up is the tenacity that New Yorkers’ have. We never give up and we give everything our all. Sounds like a famous New Yorker who just passed recently, George Steinbrenner. The third thing I learned, from a former boss,was to be realistic. The final thing I naturally picked up on – everything happens for a rhyme or reason and often things fall into place.

I realize now a combination of a few things kept me alive, my trials in New York and my tribulations in Atlanta. With that, my personality kept me going all these years. Today, I am far from the person I was two years ago. I could barely keep my head up straight and was going through daily episodes. I take a cocktail of meds that relax my muscles for my peripheral neuropathy.  With hard work I was able to reverse most of the symptoms from both conditions.

I still have more challenges than most to overcome; however, I am proud to say I am a tale of two cities.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.


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5|25: Celebrating Five Years of Autism Science Day 22: Combined Therapies Hold Promise for More Effective Treatments

February 22, 2010 Leave a comment

In honor of the anniversary of Autism Speaks’ founding on Feb 25, for the next 25 days we will be sharing stories about the many significant scientific advances that have occurred during our first five years together. Our 22nd item, Combined Therapies Hold Promise for More Effective Treatments, is from Autism Speaks’ Top 10 Autism Research Events of 2009..

Just over three years ago the FDA’s landmark approval of risperidone for the treatment of ASD represented a significant breakthrough for the autism community. Since then other large-scale autism studies have sought FDA approval for drugs that target core or associated symptoms for autism, but unfortunately few of these trials have proven successful. In 2009, taking a cue from other disorders such as ADHD where a combined effect of both medication and behavioral therapies has proven fruitful, researchers published the first successful combined randomized controlled trial for ASD. The paper in the Journal of the American Academy of Child and Adolescent Psychiatry demonstrated that combined pharmacological and behavioral treatments was more effective than pharmacological treatment alone for reducing challenging behaviors.

Risperidone is approved for reducing aggression and irritability in children and adolescents with autism. However, its use still presents a number of challenges to clinicians. Like other atypical anti-psychotics it can have adverse side effects including weight gain, potentially leading to increased risk for obesity, and GI symptoms such as diarrhea and constipation, which can already be problematic for children with ASD. Clinicians must therefore balance the benefit of treating the problem behaviors with the potential for creating new health challenges for the child. On the other hand, behavioral therapies have been shown to be one of the most reliably effective treatments for improving problem behaviors with limited side effects. Combination therapies create a synergistic therapeutic environment in which medication allows a child to get more from behavioral therapies and, at the same time, the benefits of behavioral therapy may mean lower doses of medication are required.

A new multi-site study by the Research Units on Pediatric Psychopharmacology Autism Network, the same group that conducted the pivotal studies leading to the approval of risperidone, investigated whether combining risperidone treatments with a simultaneous behavioral intervention would be more effective than medication alone. Their 24-week study of 124 children ages 4-13, compared a treatment regime of risperidone alone with a combined treatment regimen of risperidone and a parent training program that followed the principles of applied behavioral analysis. While both the combined and medication-only treatments reduced the severity of non-compliant behaviors, the combined therapy resulted in a significantly greater reduction while using lower doses of risperidone. The combined therapy was also better at reducing other challenging behaviors, such as irritability and hyperactivity.

This study provides hope for a wider range of available treatments and greater flexibility for clinicians who should be encouraged to use combined approaches in cases where medications or behavioral interventions are not effective on their own. Confirming the effectiveness of coordinated treatments that take full advantage of the benefits of both pharmaceutical and behavioral approaches also demonstrates the continued need to support research establishing the most effective treatments in all realms. Finally, the vast majority of clinical trials conducted to date have only addressed how an individual treatment compares to a placebo. Very few studies have been conducted that make head-to-head comparisons of two or more treatments as was done here, so the success of this trial will also serve to highlight the utility of “comparative effectiveness trials” for determining the best treatments for ASD.

Did you know?: Autism Speaks’ funded Interactive Autism Network (IAN) is a web-based family registry and social network that brings together thousands of families with autism research and provides a forum for families to report information about their experiences.  In a recent study on over 5000 children in IAN, 35% of parents reported that their children were taking at least one psychotropic medicine and the use of these drugs increased with age.  The incidence of a comorbid condition such as seizures, ADHD or anxiety increased the likelihood of medication use.  The IAN authors also reported on correlations between insurance access and use of multiple medications, noting that those children using public insurance plans (such as Medicaid) tended to be on more medications, possibly due to an inability to get coverage for behavioral therapies.

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