CJ Foundation for Children in Need

Autism Spectrum Disorder Awareness

What's all the Hub-Bub About Autism?
 

Everybody has issues to deal with but sometimes we forget how truly lucky we have it. One of the greatest challenges to understanding another person is to really know what he or she may be dealing with on the home front. In an effort to be more knowledgeable about the causes of the CJ Foundation for Children in Need, I decided to use the topic of autism for my school paper. It was an eye-opener!

During the research phase of my paper, I had the pleasure of talking with people affected by autism. One such person, Cito Beguristain, is a member of the CJ Foundation Board. He described the shock and momentary panic when his daughter’s doctor brusquely announced that he suspected Cito’s daughter of having autism. Cito says he was rather put off by the manner the news was delivered, but also, at a loss for what to do next. The doctor did not give him much to go on and Cito had to figure a lot out for himself through his own research. Then later, it was discovered that his daughter really did NOT have autism, so a lot of pain and effort could have been avoided.

Another great source of information is one of our newest board members, Dr. Jill Kelderman. She was able to help me understand the lack of resources and inconsistent information that parents face when they take their child to their pediatrician. The parents suspect something may be wrong and are looking to the experts for answers and time is of the essence!

“The most effective treatment (for autism) comes from intense early intervention; the earlier the intervention, the better trajectory will be for a more “normal” life for the child. Furthermore, there appears to be a “window of opportunity,” as behavioral therapy is substantially more effective prior to the age of 7. This requires a proper diagnosis, which can be troublesome, depending on the doctor. Not all doctors are well educatedin the early detection of autism, and many physicians take a “wait and see” approach, which costs patients and families valuable time which otherwise could have been spent in interventions,” Dr. Kelderman told me.

Add this to some of the additional facts (directly from my paper):

• “During the last two decades autism has moved from relative obscurity to the center of media attention and public awareness. No other child psychiatric disorder has seen such an increase in fund raising activity and lobbying for federal dollars.” (Singh, Illes, Lazzeroni, & Hallmayer, 2009, p. 788).
   
• "Autism now is more common than juvenile diabetes and childhood cancer. More than 250,000 children ages 6 to 21 with autism received public special education services in 2007, compared to 54,000 in 1998.” (Saunders, 2010, p. 36).
   
• "The dramatic increase in diagnosed cases of autism has produced the elevation of the disorder to an urgent public health concern by the Centers of Disease Control." (Saunders, 2010).
   
• "The debate ensues whether the disorder has flourished or awareness of the disorder has increased regarding the reason behind the sharp rise in number of reported cases, or both. Financial costs are reported to be approximately $3.2 million to care for an individual affected by autism over a lifetime." (Saunders, 2010).
   
• Lawmakers are charged with deciding where the ultimate financial responsibility lies in regard to taking care of individuals affected by autism, whether it be the families, health insurance companies, schools, orothers. A determination must also be made regarding how to spend the limited resources on which services and programs.
   

What the exercise of writing this paper clarified for me is that the work of the CJ Foundation for Children in Need is of vital importance and that the primary focus on autism is a timely choice.

Here are some of the things we are doing now:

• Creating a new website that will provide local and national resources for parents to explore for help with their own unique needs.
• Working with service providers to create and facilitate programs to help specifically with the needs of families affected by autism. (And families with children with other special needs are welcome to participate as well!)
• Two of the CJ Board members and I are compiling lists of people to invite to participate in the creation of a program with a great organization in Delray Beach in the very near future. We will be contacting local schools and service providers for their input. We intend to create a program that is most beneficial to the wants and needs of the families who we want to help. Our goal is to help the families deal with the affects of autism that they must face now, as opposed to providing funds to help cure autism in the future.

One of the interesting points that surfaced for me through this paper was the fact that it was the organizing of parents and parent groups that brought the social problem of autism to the forefront. This new awareness and the continued effort was the catalyst for funding for research, treatment, and other needed services. This fact exemplifies the importance of coming together for a common good.

So I am asking for your help! If you know of anyone or have suggestions as to whom I might contact, please feel free to contact us – And as always, feel free to share. There is a lot of work to do and we can make a greater difference when we band together for a common cause.

In the meantime, if you or anyone you know would like to join a caring community “doing good” for the families in our own area, please feel free to contact me.

- Janus Moncur