Thursday, April 18, 2013

Children with autism ... ...A parent's experiences in dealing with an autism spectrum diagnosis for two of their three children

What I have learned about autism

By John Dinkelman


“Your child has autism.” Words that no parent could ever fully be prepared to hear.  Yet for millions of parents each year, they are the unwelcome introduction into a dramatically different world of permanently altered hopes and expectations.

I am one of those parents.

As I take the opportunity during Autism Awareness Month to look back at my experiences in dealing with an autism spectrum diagnosis for two of my three children, I recall that one of the most difficult parts of my experience has been all of the confusing, and often conflicting, information available about the causes of autism.  Additionally, the legion of well-meaning (and sometimes not so well-meaning) people with possible treatments and promised cures – each invariably very expensive and unproven, did little to lessen the pain, or the burden that a diagnosis of autism places on a family.

What we do know is that autism is a spectrum of closely related disorders with a shared core of symptoms.  Autism spectrum disorders appear in infancy and early childhood, causing delays in many basic areas of development such as speech, play, and interaction with others.  The signs and symptoms of autism vary widely, as do the effects.  Some autistic children have only mild impairments, while others have greater obstacles to overcome.

While there are no definitive figures on the number of people affected by autism here in The Bahamas; we do know that the government of the United States monitors such things and that the U.S. Centers for Disease Control and Prevention (CDC) identify approximately one in 88 American children as being on the autism spectrum.  This is a 10-fold increase in prevalence in the past 40 years.  Studies also show that autism is four to five times more common among boys than girls, with an estimated one out of 54 boys and one in 252 girls diagnosed with the condition in the United States.

To be sure, I am by no means an expert on autism.  But as the father of two children with autism and the husband of a wife who has devoted the last 12 years to learning as much as she can about the disorder, I feel it is my duty to share what I have learned, parent-to-parent, in the hope that others will benefit from my experience.  With this in mind, I offer the following suggestions.

Become an expert on your own child

My wife and I learned through our experience that signs of autism can develop as early as the first year of a child’s life.  As a parent, you alone see and interact with your child each and every day.  So you are in the best position to spot the earliest warning signs of any developmental delay or regression.  All children develop at their own special pace and it is very important for parents to learn what the common milestones are for a child, with the understanding that there can often be a wide range in the timeline for healthy development.  If your child is not meeting the milestones for his or her age, or if you suspect a problem, share your concerns with your doctor or ask for a referral to a child development specialist.  When it comes to any issue related to the development of your child, I recommend listening to your “gut feeling” and do not be afraid to be persistent.

Don’t wait

I have learned that the best thing that a family can do is to seek early treatment with the goal of reducing the disorder’s effects and helping children learn, grow and thrive.  Every parent should seek out reliable sources of information about the treatment options, such as the United States National Institute of Mental Health.  Do not be afraid to ask questions.  Above all, if your child has been diagnosed with autism or a developmental delay, do not risk losing valuable time when your child has the best chance for improvement.  Find a way to get the extra help that your child needs through targeted treatment.

Get support

Oftentimes parents of newly diagnosed children feel as if they are the only ones experiencing the heartbreak of a diagnosis.  Joining an autism support group is a great way to meet other families dealing with the same challenges you are.  Parents can share information, get advice and lean on each other for emotional support.

That is why my wife and I were so pleased to meet other families like ours through the local autism support and advocacy group, R.E.A.C.H. (Resources & Education for Autism and Related Challenges).  Over the last year alone, R.E.A.C.H. has sponsored a series of workshops specifically for families affected by autism, has opened a chapter for families on Grand Bahama, and, through a partnership with Rotary and the Ministry of Education, opened the region’s first preschool classroom equipped to meet the needs of autistic children at Willard Patton Preschool.  The successes through R.E.A.C.H. show the power that we have as families when we work together on behalf of our children.

Enjoy your child’s unique qualities

It was only after my children were diagnosed with autism that I truly began to learn about their unique God-given talents and abilities.  It was also only then that I became sensitive to the entire community of the disabled and began to work to build a more compassionate and understanding community for them.  My wife and I have learned not to focus on how our children are different from other children but, rather, to focus on how important it is to practice love, patience and acceptance.  We make an effort everyday to embrace all our children’s unique talents, to celebrate successes (both big and small), and above all to make sure that they feel unconditionally loved and accepted.  In the end, we are better people because we are the parents of children with autism.

I encourage all parents throughout The Bahamas to take the time to realistically assess their children’s development and, if something seems amiss, to act immediately and decisively to obtain all the assistance their child needs.  In the end, it will make all the difference in the world.

• John Dinkelman is the chargé d’affaires at the United States Embassy in The Bahamas.

April 17, 2013

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