The Shining Light in Autism Awareness: Part I

This week, I am so excited to have one of my college friends, Dr. Amanda Carter, guest blog for me! I have been following her career several years and she has built an empire. Not only is she highly educated, but she is doing impressive work with children, families and organizations concerning autism. While autism is still a subject many people still do not know a lot about, I wanted to bring attention to it here on my blog. There was a time when my husband and I heard from professionals and doctors that our son may be on the spectrum. We did lots of research and ultimately found out that he is not. But I have also worked with children with autism and I know how difficult it can be for a family to adjust to the daily changes and challenges that autism entails. I hope that this guest post helps shed light on what a family needs when raising a child with autism and the resources available to them. Note: this blog was originally posted on August 3, 2014.

Did you know that autism now affects 1 in 68 children and 1 in 42 boys?These statistics are astounding, and the figures are growing at an alarming rate.  A college friend was interested in my passion with autism, and asked me to write a blog. Please bear with me as I shed light on my specialty, experience and aspiration in regards to autism. Copious research projects and studies are being conducted about this epidemic to further understand the etiology of autism with hopes of eradicating it in the near future. Some even speculate that there is a cure available; however, this post is merely based on my personal encounters and experience.
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My first experience working with a child diagnosed with autism was in undergraduate school.  At that time, I did not have a true understanding or concept of ways to ameliorate maladaptive behaviors for children on the spectrum. Although, my client’s behaviors were quite alarming it was my responsibility to de-escalate his presenting maladaptive behaviors. I recall asking his caretakers “How do you take care of yourself? What relaxation techniques do you employ”?  Now fast forward a bit...

During my tenure at Howard University, I worked with a second child diagnosed with autism. I fell in love with this child and his mother, and we became great friends. I learned so much about autism during this experience which allowed me to look at life completely different.
 
I believe every child with autism shares unique skills, talents, and gifts. During my doctoral journey, I was required to complete a dissertation research study. I began studying adjudicated juveniles who were incarcerated in Miami Dade facilities.  After going through numerous denials, becoming frustrated and abandoning my research, I reached out to my former client’s mother. I expressed my frustration and adversities with my research.  She offered to assist and help me create another topic.  

​That “AHA” moment struck me, and I found that needle in the haystack!

We agreed that I would focus on autism henceforth.  It made total sense especially since I had experience working with two autistic children.
 
I started researching and writing that night because I wanted to understand what other parents were saying about inadequate transition planning.  I was excited, encouraged and ready to proceed with full steam ahead.  My research study was conducted in East Haddam, Connecticut, and focused on “Parental Perceptions of Transition Planning for Adolescents with Asperger Syndrome”.  The stories that I heard from participants were unbelievable and sad.  Some of them said they sued the school district, hired educational attorneys, and others mentioned that they depleted their life savings in order to advocate for their children.
 
All of the participants who participated in my research mentioned that “they had to dig and hunt for resources and information because it was not readily available”.  More importantly, the participants expressed their concerns about their children’s transition into college, adjustment to dorm living, coping strategies, their ability to handle emotional dysregulation, the propensity to be subjected to bad influences, and they vocalized their children’s socialization impairments. After conducting this comprehensive research study, I obtained a wealth of information and knowledge.  Given the fact that there were many deficiencies and gaps in my research, I would like to share two of my recommendations with you:  

1. Comprehensive transition planning should be tailored to the individual student. Topics to address in creating comprehensive transition planning must focus on autonomy, employment, post secondary education, class scheduling, and dorm living. Transition planning should start in middle school, continue throughout high school and into adulthood. (Dr. Amanda Carter, 2014).

2. Professionals and parents should incorporate social media in transition planning. Determining which sites provide positive or negative reinforcement is vital. For example, Facebook, Instagram, and Twitter can be seen as an escape route into reality for an adolescent diagnosed with Autism. However, Skype and Face-Time can be identified as a positive motivator that can be used as an effective treatment modality requiring face-to-face contact. (Dr. Amanda Carter, 2014).

I am a community ambassador who partners with Autism Speaks in an effort to raise awareness and fund raise to support autism.  In November 2014, I founded my organization, “Care and Recreational Activities for Autistic People”; hereinafter, referred to as CARAFAP. CARAFAP provides recreational, respite, special events, behavioral and consulting services for individuals diagnosed with Autism Spectrum Disorder and Down Syndrome.  The goal is to create a supportive environment where individuals with disabilities are free to be themselves without being pigeonholed by societal norms and expectations.
   
I am truly appreciative and grateful that my colleague valued my insight on this subject and asked me to express my views and interest in advancing this cause. This is only the beginning, and the projects that are forthcoming will have a massive impact on this population.
 
If you are interested in learning more about my research study, blogs, and future publications, please feel free to e-mail me at [email protected] and PLEASE connect with me on social media.

Thank you for taking the time to learn more about my journey towards autism.
 
Respectfully,  
Dr. Amanda Carter, CEO & Founder  
CARAFAP, LLC

CARE AND RECREATIONAL ACTIVITIES FOR AUTISTIC PEOPLE, CARAFAP
6710 Oxon Hill Road Suite 210
Oxon Hill, Maryland 20746
301-235-3093
1-888-951-6370
Website: www.carafap.com
FaceBook: CARAFAP
E-mail: [email protected]

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