Part of the Introduction in the beginning of
AUTHORS’ NOTE:
It would be an understatement to say that Autism Spectrum Disorder is the fastest growing developmental disorder around the world. And Leo Kanner’s report in 1943, doctors and researchers are still baffled as to the causes and triggers. We’ll go as far as to say differences of opinions have formed barriers and debates between doctors and other professionals – and not the least, between parents.
We are simple parents and journalistic writers who have spent the last two years researching autism, seeking answers to our questionnaires, and gathering personal stories. We have compiled resources and information and have posed “devil’s advocate” questions throughout in the hopes of bringing more awareness and a unified voice. Our questions are in no way a bashing of any institution but more of a plea to have the words of parents heard.
We have kept to the matter at hand, offering you as much of the information we’ve compiled as possible. In some areas, our comments might hit a nerve due to our straightforward manner. We do not mean any disrespect. Our intent is to highlight questions that are still unanswered and posed repeatedly by parents who have contacted us.
We also bring to the forefront the autism realities of governmental, medical, and educational systems. Another important issue is the long–term residential and institutionalized care given to severely affected adults with autism. Sedating and medicating should not be the solution. Quality care and appropriately trained professionals should be responsible for the long–term care of these individuals. Ignoring the more severe autism cases will not magically make them disappear. Placement of adults with autism in correctional facilities and hospital psychiatric wards and displacing them to residences in the U.S. or places within their own countries are not feasible solutions.
The actual names of some families who gave permission to be included in our Personal Stories sections–and excerpts of the stories found throughout the book–have been changed to respect their privacy, upon the families’ requests.
We need to unlock the mystery surrounding ASD–Autism Spectrum Disorder. The way to do this is to formulate strategic researches aimed at more than one road. What we need is a collaborated effort from all divisions–government agencies, medical and scientific research professionals–and to eliminate the debating “yes/no” split that has invaded this topic.
The collaborative effort will help advance the research into the cause or causes of autism. Once this/these are discovered, we can move on to the healing process.
One stressful area many parents encounter when the diagnosis “your child is autistic” is spoken is the lack of direction on what to do next–where to go, who to call.
The needs of these families to alleviate some of the unknowns create a higher anxiety stratum for them, where their needs should be the next priority after the diagnosis. They request information and resources such as:
•Information about autism
•Workshops/Intervention programs to train parents how to help their children while they are on that rollercoaster ride called “the waiting list”
•Support groups for families
•Resources to various therapists/centers
This is where our book will help. We have accumulated various resources along with information you will read in the personal stories.
Autism is not a contagious disease, and, with early intervention, there is hope for social communicative skills to be adapted. But more than that, remember your child will teach you patience, tolerance, love, and acceptance.
To all the parents, we want to thank you, and remember…
You are NOT alone.
Lea Schizas & Litsa Kamateros
