Chantal, Jeremy, Daniel Sicile-Kira
Receiving a diagnosis of autism
for your child now is easier than when our son, Jeremy, was diagnosed over twenty years ago. There is more awareness about autism and there are many more treatments, therapies, and strategies to consider, depending on your child’s needs. However, what hasn't changed is the feeling you get that your world has turned upside down and that you are now a member of a club that you never wanted to be a part of.
Over the month of February, I’ll be publishing weekly blogposts here with some advice for parents of newly diagnosed children. You don't have to feel all alone - there are many parent groups and resources to help you on your journey. In fact, if in the past there was not enough information available about autism, now there is an overabundance. The first step for a new parents is to learn how to filter through all that is out there to make the right decisions for your child, because each child is different. These blogposts will help you figure it out. The information provided in the posts come from research conducted while updating my first book now entitled: Autism Spectrum Disorder: The Complete Guide to Understanding Autism (Perigee January 2014).
It is true that you are not alone: there are many organizations, associations, books, and websites ready to help you. Remember too that there is comfort to be had in meeting others experiencing the same situation as you. There is also power in numbers: the more people who get together, the more useful ideas ﬂoat around. A word of warning - there are so many sources of information on the internet to draw from that parents need to use caution and learn how to discern factual information from marketing hype. Autism has, unfortunately, become a money-making business now for many.
Here are some basic tips to keep in mind as you start on your quest for knowedge:
• Make sure you are seeking information from reliable sources. Just because something is published on a website or in a magazine does not mean it is accurate. Stay away from websites that do not clearly state where the information listed comes from; who or what organization has created the website; and their connection to whatever products or treatment they are trying to sell you .
• Take it one step at a time and seek only what you are ready to assimilate. Focus on the present. Learn what you can that will help you today or over the next six months. At this early stage, if you try to think too far ahead, you may feel overwhelmed. Do only what you feel capable of doing, and read only what you are ready to digest.
• Learn the jargon. If someone uses a word you don’t understand, look it up or ask for an explanation. Ask questions if you don’t understand. Ignorance is not bliss, and life will become a lot easier if you get used to asking questions. Before going to any meetings or appointments, write questions down.
• Stay away from treatments that are touted as being equally effective for everyone with autism. There is no such thing.What works for one child may not necessarily work for yours. Everyone is different; you need to ﬁnd what is right for your child.
• Do not be intimidated by others. Some parents feel overawed by medical or educational professionals. There is no need to feel this way. They may be an expert in their ﬁeld, yet you are the expert on your child. Autism is complex, and even educational and medical experts do not know everything. Together you can be a team.
In my next post, I’ll be listing some recommended non-profit organizations and free on-line resources to start empowering yourself with knowledge. If you have a copy of Autism Spectrum Disorder, you'll find these resources in Chapter 4 and in the resource section in the back of the book.
You’ll get through this; we all have!