Autism spectrum disorder (ASD) is a neurodevelopmental disability, and it can be detected during the early childhood years. The autism umbrella is a wide range of complex conditions that affects abilities of verbal and non-verbal communication, social interaction, and repetitive or restrictive behaviors. It’s extremely difficult to generalize about autism; children with ASD can vary in severity of symptoms, and those may be different from another.
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For this reason, autism is considered a spectrum of disorders. “The symptoms may also combine in a unique way for each child, thereby producing different sets of problems or difficulties among children with ASD” (Min).
The Center for Disease Control and Prevention (CDC) reported in 2014 that about 1% of the world population has autism spectrum disorder. In United States, more than 3.5 million people live with autism. During 2018, one of 59 children were born with this disorder, and it was contrasting with the statistic of one in 150 children from 2000. According to the CDC, the average age diagnosis is 4-5 years, but a reliable autism diagnosis can be made as early as 18-24 months, and that’s why early detection is so critical, even though research shows that most parents have no knowledge about autism symptoms. There is no known cause for ASD, but its prevalence rate is on the rise (ADDM Network).
These results suggest the importance of generate awareness, so parents know what to look for if they think their child has autism. Some signs and symptoms that a child with ASD may exhibit include:
Difficulty in expressing needs, engages in odd ritualistic movements such as rocking, laughs or cries or shows distress for reasons not apparent to others, temper tantrums, prefers to be alone, difficulty in mixing with other children or adults, unable to relate to others in socially appropriate ways, not responsive to normal teaching methods, not responsive to verbal cues/acts as if deaf although hearing tests are in the normal range, sustained play and special interest with certain toys or objects, over-sensitive or under-sensitive to pain, noticeable physical over-activity or extreme under-activity, and uneven gross/fine motor skill development. (Min)
In the United States, it’s been estimated the total costs per year for children with ASD to be between $11.5 billion – $60.9 billion. This represents a mixture of direct and indirect costs of special education and medical care. “Children of all ages with ASD had average medical expenditures that exceeded those without ASD by $4,110–$6,200 per year” (ADDM Network). This is an average of 4.1 – 6.2 times greater than for those without ASD. In 2005, “the average annual medical costs for Medicaid-enrolled children with ASD were $10,709 per child” (ADDM Network), which represent about six times higher than the costs for children without ASD, and the cost of intensive behavioral interventions for children with ASD was $40,000 to $60,000 per child per year (ADDM Network).
A study from The United States Department of Health revealed that cases of autism have increased 500% over the past five years, although the causes of autism have remained ambiguous. “Genetically predisposed children are encountering a neurologically toxic environmental ‘trigger’ that disables them and disconnects them from the world” (Matson and Boisjoli). Those triggers could include heavy metal, pesticides, viral, parasite, and bacterial-induced toxicity. In another report presented at a recent national autism association conference in the United States, Dr. Bryan Jepson (author of Changing the Course of Autism: A Scientific Approach for Parents and Physicians), states “that 80,000 chemicals have been introduced into the global environment in the last 20 years, none of which have been tested for neurological toxicity” (Matson and Boisjoli). This time of exposure coincides with the snowball effect period of this autism epidemic. Also, it is projected that within a decade the tendency will be as high as 1 in 22 people. “One encouraging sign that increasing awareness of the ‘trigger effect’ may be starting to make a difference is that children who were first diagnosed in or after 2008 in the USA were more likely to have milder autism spectrum disorder (ASD) than those diagnosed in or before 2007” (Matson and Boisjoli).
While autism was once a condition that was rarely discussed in public, now we find information everywhere: on television, radio, and internet. There is a considerable amount of autism organizations in United States; however, in New Jersey, only few of them are exceptional. Since 2002, Bergen’s Promise, Inc. is a recognized 501(3)(c) private non-profit organization in assisting and supporting to families with youth ages of 5 to 21. They provide a comprehensive, individualized wraparound service planning through a team process; that covers behavioral, emotional, and mental health challenges, substance use issues and developmental disabilities. This non-profit organization has worked with over 4,000 youth and their families. They proudly stated: “our many successful graduations are the agency’s most significant accomplishments” (Bergen’s Promise). Bergen’s Promise is the designated Care Management Organization (CMO) for Bergen County as part of The NJ Department of Children and families, Children’s System of Care (CSOC).
The Wraparound Model of Care is a new point of reference in helping families to deal with complicated emotional and behavioral issues. This model could be successful by creating a plan to achieve the family’s long-term vision of success, where involving the youth and family in the decision-making process is primordial. Together as a team, families are facing the adversity with a focus on strengths, not deficits. “Other family members, friends and community supports closest to the family get involved to offer guidance and support. In-home and community-based resources are used to address the most important needs” (Bergen’s Promise). The success of this model has Bergen’s Promise mission as its foundation:
The goal of the organization is to keep ‘Healthy Families, Safe at Home.’ Bergen’s Promise will provide exceptional care management services to keep youth and families physically and emotionally safe. (Bergen’s Promise)
And inspired by its vision statement:
Our services will be built on the family’s strengths and delivered through a strong, coordinated network of community-based providers. We will strive to provide the highest quality of care that will produce the most positive results for the youth and families we serve. (Bergen’s Promise)
Like any other organization, Bergen’s Promise faces many challenges: finding a service provider qualified to provide Applied Behavior Analysis (ABA) services can be a complicated task; an organization that provides ABA therapy will have a Registered Behavior Technician (RBT), a Board Certified Associate Behavior Analyst (BCaBA), and a Board-Certified Behavior Analyst (BCBA) providing direct or indirect services to children. There is a lot of sites that provide therapy under the philosophy of ABA, but they are not certified by the Behavior Analyst Certification Board (BACB). The therapist who design the plan must hold a master’s degree in Applied Behavior Analysis; if the therapist has a master’s degree in Social Work, Psychology, Occupational Therapy, or in any other field the therapist has not received specific training to provide ABA services. But this task could be even more difficult when these services must be covered by Medicaid, and it represents the 81% of the budget. The CSOC covers the 14%. And only the 5% must be through alternative funding sources (Ramirez).
Non-profit organization are performing a noble cause and for me thinking in volunteering would be a great opportunity to give back. My family has been working with Bergen’s Promise for about six years. My daughter, Ayleen, was diagnosed of Autism at the age of two and currently is one of their clients. The first step was contact Melissa Ramirez, her Care Manager in Bergen’s Promise, and we were talking about the possibility of sharing our experiences to other parents, encourage them to advocate for their children, and make them understand how important they are in this journey through recovery. We identify together that parents played a critical role in their children success. While therapist often focus on what the child can’t do, parents could bring out the best in their children; however, something that started as a good idea, days later, was completely dissolved in one briefed sentence for Melissa’s boss: “this will be conflict of interest since your daughter is one of our clients,” what unexpected refusal (strike one). A couple weeks later, I heard about an opportunity of volunteering in a Compassionate Behavioral Health Program in New Bridge Medical Center, so I decided to go to speak Susan Burkhardt, Manager of Volunteer Services, and she informed me about all requirements needed: background check, drug test, medical exam, vaccination, training, and 60 hours commitment; impossible to achieve for now (strike Two).
I didn’t realize that doing my ten hours of service won’t be easy, but honestly, I don’t have to go church to pray God; same as volunteering, it could be anywhere. Our contribution is to help other parents to face this challenge by providing information, sharing personal experiences, or offering practical ideas to alleviate any stress related to parenting children with ASD. It’s not an easy road that we are traveling to recovery, however, it also has rewards – our daughter really helped us to appreciate the little things in life more than we did before. We must be honest with the families that are coming to our house, we always emphasize our role as parents is not easy, but the results are incredibly beautiful. My wife and I still remember that day when our daughter was diagnosed with severe Autism. We still remember the nurse telling us “hopefully, when she turns 40 you don’t need to still be wiping her bottom after using the toilet.” We still remember crying every day for more than four years. We still remember knocking at the church’s door at 2:00am asking God for several times: why God? Why? (It’s ok to having those feeling). Despite all, we’ll never forget the first time when she looked into our eyes. We’ll never forget her first word. We’ll never forget her first kiss without prompting (expressing feelings for real). This is about being patient and put your faith in God. We tell all the parents both side of the story: the good and the bad.
We explained to parents that early intervention is the key and seeking professional help is highly recommended. Therapy doesn’t end after the therapist leaves the house; parents’ job is meant to be a 24/7 therapist. Also, their diet must be as healthy as possible, no junk food at all. Repeating concepts and anticipating events are primordial; my wife took two hours every day in the bathroom for two years to teach her the colors, shapes, and the alphabet. My daughter left the pampers at the age of four (not forty). Now she is going to an inclusion class, reading small chapter books, and solving problems of addition, subtraction, multiplication, and division.
We met several parents; from those that are highly concerned to others that just give up after listening how we get rid of the pampers: first, we need to monitor and create a chart with intervals of twenty or thirty minutes, then observe whether our child is wet or dry. Based on the information from the chart, we need to plan a daily routine. It’s also important to set up the bathroom free of distractions, explain the routine to the child, create a picture or visual chart, and always provide a positive feedback on each accomplish. Then the intervals will be gradually increased until eliminate the pampers at all. Most parents think that toilet training during the day is so hard, but what about the schedule during the night, or what about now that my ten years old daughter has been training about her puberty; we covered topics like hygiene, cramps, blood, and even menopause. We bought menstrual pads and food coloring (red), and due to her sensory issues, we decided to practice by placing the wet pad in her underwear for about 10 minutes. Her face denoted discomfort, and she couldn’t hold it by telling my wife: “Mom, I want to be in menopause.” Yes, this is she. And it’s been more than nine years of service.
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