Parents are the biggest supporters in raising awareness for Autism Spectrum disorders. There is no question that many parents dedicate their lives to raising, supporting, and loving their children on the spectrum. With that dedication comes a great deal of stress. Overcoming the social difficulties in an autistic child is not only a great deal of work for the child, it is also an intensive process for the parents. A continuous strategy of teaching the social skills that come naturally (or unnaturally) to the parent in a broken down, step by step method to the child can try anyone's patience. Add to that the behavioral difficulties, sleep problems, eating problems, and countless other possible issues; a parent has a great deal on his/her plate.
Not only are parents stressed due to raising a child on the spectrum, they must also navigate the vast and complicated healthcare and education systems. They are made to fight exhausting battles while also attempting to maintain a family, marriage, career, and somewhere in all of that make time for themselves. Usually, the parent puts his/her needs aside in order to make time for the numerous demands of life on the autism spectrum. This creates an isolated individual who may quickly burn out, become ill, and at times become desperate. The system that is designed to help is actually a contributing factor in destroying many families.
The main goal for families is survival. The main goal for the system meant to assist them is to save as much money as possible, in essence the system's own survival. How can these two entities work together when their goals are not synchronous? The fact of the matter is, if the support systems would spend a little time and money funding the proper, scientifically based approaches to treating autism spectrum disorders, and providing these services to families in a convenient, easy to navigate manor, the system would save money not only in the short term, but in the long term as well when they provide assurance that they will be allowing parents to raise socially competent contributing members of society. Families and the various systems they must deal with to gain services and healthcare for their children must work together as a team in order to prevent families from losing everything; including bankruptcy, divorce, health, and well-being. The systems must work with families in order to ensure that the families are getting the proper services in a timely manner. A child on the spectrum cannot wait a few months, and especially not a few years for services. Early intervention is key. If the system cannot help these children immediately, they have already failed the entire family before they even started.
It is time for families to get proper support so that they may focus their energies on what is really important, and that is their family. Someone needs to raise awareness for these parents, and offer them the support that they so freely give to their own children. Not because they want to, but because they have to or it will all fall apart. The system should take a page from that book.
Jaclyn Hunt, MA
Autism and Special Needs Life Coach