Monday, August 26, 2013

Expertise Should Not Replace Parenting

Expertise Should Not Replace Parenting
By Jaclyn Hunt, MA

            I have found that parents of Autistic children are the most caring, patient, loving, and passionate parents the world has to offer.  In fact, they are the biggest champions for their children and are the driving force in spreading Autism Awareness across the globe.  However, there are many parents out there who are seriously struggling with the challenges of raising a child or children on the Autism Spectrum.  These challenges affect the parents, the marriage, the family unit as a whole, and the social lives of everyone in the family, and every aspect of daily living.  Every parent of a child on the autism spectrum understands these challenges completely.  It is important to remember that no parent needs to suffer alone.
            Once a diagnosis of autism is sought out and made, and the battles with insurance companies, the state, and the school system are in full swing, it is very overwhelming to many parents that besides the 20 or more hours of intervention their children go through each day outside of the home, at least that much intervention must continue while the child is at home.  Autism takes up more time than a full time job, much more, and parents must direct their focus on teaching their children the most basic mandatory skills needed to get their children through the rest of their lives.  For instance, if your child is not yet potty trained, that is the very first priority in terms of making your child self-sufficient.  It does not get easier as the child gets older.  It must be done now.  All of your energy and teaching focus should be on that one task until it is learned across every environment and circumstance.
            Furthermore, do not waste time teaching your child how to read or write if they cannot take care of a basic bodily function adequately.  This is called prioritizing.  Every skill a person needs to obtain and maintain an independent life as an adult is what needs to be the focus of any intervention involving Autism.  The smartest person in the world will not get into a school or get a job if they are not capable of using the bathroom or cleaning themselves properly on their own.  The goal of every parent must be to ensure that when they are no longer in this world, their children will be able to reasonable take care of themselves either alone or in a group home setting as an adult.  This requires cleanliness, safety for self and others, and the ability to perform useful tasks for employment purposes. 
            Unfortunately, what many parents do not realize is that knowing how to read or write is not a priority when you are 50 years old and unable to dress yourself in the mornings.  The sad truth is that if you are no longer around as a caretaker, and there is no one else willing to take care of your child (never assume a typical sibling is willing to take on this monumental task), the state will get custody and will not have the patience or expertise to deal with a person that cannot take reasonable care of themselves.  Your child will get agitated when he/she is not understood, and perhaps act out with frustration.  The institutions will then resort to medication and sedation to keep your child from harming his/her self and others.  In some cases, your child may end up hurting someone, and the legal system does not make exceptions for someone on the autism spectrum.  Your child could end up in prison or some other dangerous setting where they do not belong. 
            Remember, autism is a social disability.  People on the spectrum often do not understand that they need other people in order to survive.  We all need society in order to survive.  The only way a child with Autism can learn that concept is to be taught it by their parents.  When a parent does everything for their autistic child they risk that child never learning the very basic needs that they are fully capable of achieving with a lot of time and patience on the part of the teacher.  This should be every parent’s number one priority and goal, to make his/her child self-sufficient.  It should be the focus of any therapy your child undergoes outside of the house, and it should be the daily focus of the entire family in everything that you do.  Self-sufficiency, ironically, involves learning how to work with and deal with other people and their unpredictable nature.  Start with the basics and work your way up to more complicated concepts as early as possible.  It is a lot harder to teach an autistic adult how to take a shower by himself than it is to teach a 5 year old.  Yet, it can be done with slow guidance and patience on the part of the teacher.  It must be done.
            While I believe the fight to bring Autism Awareness is a good and just cause, I do believe the priority and focus must be that these parents work with their children daily and put in hours of intensive behavioral teaching with their children in addition to any treatments outside of the home so that those children will have a fighting chance in a world where so many still do not understand or tolerate people who are different.  If we work on one child and one adult at a time, we will see that they are all capable of learning the essential skills necessary for survival. Imagine then how empowered they will be to truly change the world’s view on Autism.  The best way to spread Autism Awareness is to show the world that your child and family can overcome the difficulties that Autism influences and to allow the world to see the wonderful person that Autism can no longer hide.

Jaclyn Hunt is a Life Coach specializing in the Autism and Special Needs Population. She works with adults on the spectrum, parents of autistic children and adults, spouses of adults on the spectrum, and anyone affected by autism or other related special needs.  Visit her website to learn more:
Twitter: @asnlifecoach

Thursday, August 1, 2013

Parental Stress in raising a child on the Autism Spectrum

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
Twitter: asnlifecoach