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

thenassauguardian

Bahamas: ...the challenges facing children and adults who have been diagnosed with autism

Early diagnosis and treatment is key to addressing autism


By UNITED STATES AMBASSADOR TO THE BAHAMAS
NICOLE AVANT

APRIL is National Autism Awareness Month, which provides a special opportunity for individuals across The Bahamas to raise awareness in their neighbourhoods, workplaces, schools and local communities about the challenges facing children and adults who have been diagnosed with autism.

Autism affects one in every 110 children and one in every 70 boys, yet the cause remains unknown.

Signs and symptoms typically appear during the first three years of life and relate to language, social behavior, and behaviors concerning objects and routines.

Last August, I invited actress, author, and international autism activist Holly Robinson-Peete, and her husband former NFL quarterback, Rodney Peete, to an event at my residence to share their personal experiences raising their autistic son RJ, and the impact of his diagnosis on the entire family. The US Embassy partnered with the Resources and Education for Autism and Related Challenges (REACH) organization on the event that brought together Bahamian families with Autistic children and leading Bahamian autism experts and specialists for a discussion on this critical issue.

Holly and Rodney spoke candidly about raising an autistic child and their search for reliable information and the best treatments.

Although this was the Peete family's first autism outreach event outside of the United States, their message to Bahamian parents remained the same: "Get out of denial quickly, arm yourself with information, keep an open mind and stay proactive, hopeful, and prayerful. Above all, focus on your child's gifts, not on their limitations."

Through the Peete family's experience it became clear that early diagnosis and intensive intervention can have a profound impact on the lives of children and adults who have been diagnosed with autism.

Treatments have been developed in recent years that make it possible for nearly half the children who are diagnosed early with autism to eliminate the need for special education.

If children receive intervention treatment before the age of four, many of them go on to live productive lives comparable to those without a developmental disability.

Therefore, it is critically important to identify those children who are at-risk in order to reduce the time between symptom appearance and formal diagnosis and treatment.

I applaud REACH for providing a support system for parents with children affected by autism, for their efforts in April as well as throughout the year to raise awareness about autism and for arming parents with critical information on innovative treatment opportunities in the Bahamas and the United States.

As autism awareness increases throughout The Bahamas, parents, caregivers and educators are more likely to identify the early signs of autism and seek available treatment.

Raising awareness about autism will also encourage educators in the Bahamas to identify new approaches to ensure that students with developmental challenges have the opportunity to excel in an inclusive classroom, particularly on the Family Islands where special therapies and treatments may be out of reach.

Thursday, April 14, 2011

tribune242

Bahamas: Who will Care for The Autistic Members of The Bahamian Society?

Who will Care for The Autistic Members of Bahamian society?

By TANEKA THOMPSON
Tribune Staff Reporter
tthompson@tribunemedia.net:


Most parents fret about their children's future and safety until their offspring reach an age where they are capable of taking care of themselves. Parents are usually overcome with questions of "How are they going to manage when I am gone?" and "Who will take care of them?"

These concerns are born out of love and are generally a mark of a good, caring guardian. Most times these fears never materialise into reality and a parent can breathe a sigh of relief once the children are off to college or have landed good jobs. But think of how terrifying it is when the child is unable to care for themselves even after they are well past their teenage years.

For too many families of children with autism, this is a real concern with no solution on the horizon. Last week I came face to face with some of these parents' struggles during an autism awareness reception hosted by US Ambassador Nicole Avant in conjunction with local autism advocacy group REACH.

REACH was formed 12 years ago to provide a support network for parents of children with special needs and to increase awareness about autism. Since its inception, the group has also raised scholarship money to train Bahamian teachers to better serve autistic children.

The common link in many of those parents' lives is a deficit in adequate and affordable local treatment centres for autistic children and assisted living centres to house those children when they become adults.

"Currently there is one autistic primary school class at Garvin Tynes Primary and one high school class at Anatol Rodgers Secondary School. In the country there are only three therapists that work with the Ministry of Education and there is a very long waiting list.

"A lot of the (autistic) kids are growing older now and we need living assistance for them - we're not going to be here forever and after parents pass away there's a concern of who takes care of the kids," lamented Kim Gibson, public relations officer at REACH, and mother to a seven-year-old autistic son.

Opposition Leader and former Prime Minister Perry Christie - father of 22-year-old Adam, who also is autistic - echoed these sentiments during a recent interview with The Tribune. He added that while there have been notable advancements in special needs care over the last ten years or so, those improvements pale in comparison to what is left undone.

"Every parent's fear is, if they were to die what would happen to this child? That is the most common worry for parents of disabled children.

These parents are so committed to helping disabled children but they know that it doesn't necessarily mean a sibling or other relative will be as committed.

"That is where the state has to recognise that it has not yet put in place the kind of after care to address issues of that kind. Any government that comes to power has a commitment to address the issue but has to take a balanced approach to the allocation of resources so we are ensuring that these special persons get fair treatment.

"Sometimes they are overlooked and even though there is improvement (over the last few years) there is still more to be done," said Mr Christie.

According to American statistics, about one in every 110 children are autistic with boys three times as likely to be autistic than girls.

Local psychologist and autism specialist Dr Michelle Major, clinical director of the Seahorse Institute, thinks the condition is just as prevalent in the Bahamas.

"I don't think that they're that far off from what the national statistics are in the US to be honest with you. When we talk about the whole spectrum (of autism), I do feel that we are pretty much in the same area," said Dr Major when asked to compare Bahamian rates of autism to those in the States.

While autism numbers have grown in the United States over the past few years, something observers attribute to better detection methods, many afflicted children go undiagnosed here - either due to a lack of understanding about developmental disorders, a lack of trained doctors who can make a diagnosis, or because of the negative stigma attached to having a disability.

Dr Major has diagnosed autistic children from Abaco, Eleuthera and Long Island and says while resources are scarce in New Providence they are virtually non-existent in the family islands.

During his travels throughout the country, Mr Christie said he has encountered many children with disabilities who were not receiving proper treatment from state care facilities. He thinks this is because government agencies haven't canvassed the remote areas to identify persons with special needs.

"We have to recognise that some groups have done a lot to help. The Stapleton School (in New Providence) is tremendous asset to the country but I've always felt that we haven't done the kind of national audit that we need to find out in all of the remote areas of the Bahamas where these children are."

Those families who are fighting for social improvements for their autistic children will tell you that there is no simple solution to the myriad of problems they face every day: the stigma of having a differently abled child, the stares, lack of understanding, to the strain on their pocket books and marriages.

However, the parents, educators and physicians who tackle these problems head on and who have organised themselves without any prompting from any public agency deserve much more praise and all the help they can get. They stand as examples of good parenting, concerned and productive members of civil society.

August 23, 2010

tribune242