Tuesday, September 3, 2013

Refuse Regression in Adults on the Autism Spectrum

            I have always had very high expectations of the people in my life.  Seeing what a person is capable of, their full potential, is a talent that I have obtained throughout the years.  The downside of this ability is that I frequently expect more out of a person than he/she is ready to demonstrate to the world.  For typical people, this can be annoying and frustrating, perhaps the source of a disagreement between us.  However, for the people on the Autism Spectrum that I work with on a daily basis, this attitude of expectation is a must.  It is mandatory that we hold very high standards for those on the spectrum.  These people need to be challenged and guided towards success.  I believe holding high expectations for those on the spectrum is beneficial, and the benefits far outweigh the consequences when it comes to making them safe, self-sufficient, and happy.
            To explain further, if we hold the belief that a person with autism will never amount to anything, then what kind of effort will we, as teachers and parents, make in assisting and motivating that child to achieve?  We cannot be the ones to defeat our children’s chances of success before they have even had the opportunity to begin.  I do not care if a so-called “professional” tells you directly that your child is not capable of advancing beyond a certain point because of his/her disability.  You must believe in your heart and soul that your child is capable of anything, and take the steps necessary to give him/her all of the opportunities possible to achieve those goals.  The role of the parent, teacher, therapist, and other professionals who deal with autism is to provide plentiful opportunities for success.  These opportunities will not present themselves.  We must become tools for our children to utilize in order for them to advance, achieve, and grow.
            Now, I know that it is tempting to treat our young ones as babies and do everything we possibly can for them.  However, I have seen parents tie shoes, zipper coats, and spoon feed their adult children who have demonstrated in school and group home environments that they are perfectly capable of all of these tasks when left to do them on their own.  These very smart children then learn from their parents that they do not need to do these basic chores on their own because in the home environment it will always be automatically done for them.  Take this example, when typing do you care about your spelling if your spell check program is going to correct the mistakes for you?  Your highly intelligent child learns that there is no need to waste energy on completing a task that will be done for them anyway.  It would be the equivalent of working at a job where the boss of the company asks you to do a task, but then goes on to do it himself.  What then is the point of your job?  We need to attach meaning and purpose to everything we teach our children with autism, and they need to see it.
            For instance, I have witnessed parents of autistic adults help with basic everyday personal tasks such as washing up, brushing their teeth, and combing their hair out of love and compassion while not realizing that these acts of love are doing much more harm than good.  If your adult child is perfectly capable of making himself a sandwich for lunch, then he should be making himself a sandwich for lunch every single day.  It is a skill he will need when you are no longer there.  Anything that needs to be accomplished when the parent is no longer around to care for the child must be prioritized, learned, and done on a daily basis.  Your adult child will not spontaneously learn how to do these tasks the moment you are gone.  He/she needs to learn these skills now, from you the parent, and reinforced by you on a daily basis.  If you do not consistently and continually teach, reinforce, and solidify the learning of important real world skills across various environments in your child, there is a very high probability that they will regress to an earlier stage of development.
            Unfortunately, regression is a very real threat and serious worry I have as a professional in the field.  When I see an adult on the autism spectrum go from being able to take care of his/her daily needs in school or in a group home environment and then return home to the parents where his/her every whim is catered to on a moment to moment basis I have an intense feeling of disappointment, not in the child but with the parent.  My goal as a Life Coach that specializes in autism is to teach these adults real life skills so that they may become self-sufficient, independent, and successful in the world.  One of the biggest obstacles in achieving this goal is dealing with the parents continually extinguishing all of the reinforcing work I have done with their child.  They mistake learning with harm, discomfort, and pain.  I need the parents to work with me, as a team, and offer tough love to ensure that their child achieves all of the goals I have set for them and know in my heart that they can achieve.  The parent has to be the biggest champion for the child.  I can only show them the way.
            To support my point even further, I urge all parents to remember the story of Helen Keller, who became both blind and deaf as an infant.  She ruled her household before she had achieved her breakthrough with her teacher.  That teacher took her away from her home for a time and taught her manners, chores, and real life skills that were all done for her in the past without even an attempt to teach her because of her disabilities.  Helen was able to do it all with time, patience, and encouragement from her teacher.  Then, the moment she was brought back to her family home she regressed back to her old ways.  Why should she put all of this effort into life when she can relax and let it be done automatically for her?  The parent’s desire to be lenient and “loving” because it was a special occasion, her home coming, was doing her nothing but harm.  Consistency is key, and there are no breaks when it comes to living life every single day.  Certain skills must be performed on a daily basis.  You do not say to yourself, “Today, I don’t feel like getting up to urinate, I’ll just sit here and wait for someone to come along and clean me up.”  It is a huge responsibility for the parents to make sure they do not let their children think this way, ever.  It must be done, and it must be done all day, every day.
            You, as a parent, must be willing to put as much effort into teaching your child as he/she must put into learning.  It is a matter of survival.  If you do not, what will happen to your child when you are not around?  So many adults on the spectrum end up in the custody of the government, prison, or worse.  I lose sleep every night over the vast number of autistic children that become adults without ever learning the basic skills necessary to at least be able to live in a group home environment.  There are so many who are perfectly capable of doing everything necessary to live on their own, and contribute significantly and successfully to society.  Please take this message as a reason to start working with your child today.  There will be tantrums, meltdowns, resistance and anger over the changes but no matter how old your child is, they can learn enough skills to be truly free in this world.  You owe it to them to try, because they deserve it just as much as anyone else does.

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
Facebook: https://www.facebook.com/AutismAndSpecialNeedsLifeCoach

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