This column dovetails my last one concerning mental health care in Nevada.
The recent zeal to bring attention to Autism Spectrum Disorders (ASD) has rightfully brought the topic to the fore. But I feel that the media blitz has been at the expense of other equally severe mental disabilities, the awareness of which have waned and suffered. However good the intentions toward autism coverage may be, this attention has consequently overshadowed other developmental disabilities that are just as critical to treat, and equally heart-breaking.
I see the public service announcements all the time on television. The television news reports on autism frequently. There is a designated autism awareness month. And some of the loudest voices in government lobbies are autism advocates and activists.
Here in Nevada there is as great a push for autism awareness, diagnostic and treatment services as there is nationwide. Good for those suffering from the disability. I'm sure all of this attention helps with research and treatment.
Please do not take this the wrong way: I am not against autism awareness campaigns, fundraisers, or research, diagnostic or treatment services. Certainly the prevalence of autism, as well as its pervasive impact on the lives of children and families afflicted with the disorder, is cause for concern.
But there are other serious and severe childhood disabilities that are being overlooked because of this zeal.
I speak specifically on behalf of thousands of children born nationwide each year, and hundreds here in Nevada, with fetal alcohol or fetal drug spectrum disorders (FASD, FDSD). The rate of children born with at least fetal drug or fetal alcohol exposure is as alarming as the 1:110 to 1:150 ratios of children born with an autism spectrum disorder.
The prevalence of autism among live births represents a little less than one percent of the total number of children born nationwide each year.
FASD/FDSD birth rates are comparatively smaller at about two to five cases per one thousand births on average. That’s only about half of one percent. However, prevalence of FASD and FDSD can vary significantly according to population and demographics.
Among American Indian tribes, for instance, the prevalence of full-blown Fetal Alcohol Syndrome, or FAS, jumps exponentially to just under six cases per thousand births.
FASD and FDSD include full-blown diagnoses of FAS/FDS, as well as fetal alcohol and/or drug effects, and fetal alcohol and/or drug exposure; the latter two of which are statistically more common than the former, but can still manifest birth defects, lifelong developmental deficits, and permanent brain damage.
Children born with any form or degree of FASD/FDSD can face a number of significant developmental challenges, which will never get better. From cognitive to behavioral and social limitations, children born with alcohol and/or drug-related disabilities have an organic deficiency to their brains that will never heal or improve. There will always be a part of the brain which remains damaged or missing because of the interference of alcohol and/or drug chemicals during critical stages of prenatal development.
Unlike autism, which some studies have shown to actually improve in certain cases with treatment and age, FASD/FDSD disabilities are with a child for life. The limitations are permanent. Just as with intellectual disabilities, there is hope neither for improvement nor for a cure.
In fact, FASD/FDSD are more difficult to diagnose early on than even autism, because many signs and symptoms don't become evident until a child reaches school age.
While developmental delays are common among infants afflicted with FASD/FDSD, these deficiencies can be addressed with appropriate early intervention. In so many cases, though, children with this disability may show little sign of serious problems until they have reached toddler or school age. This can be both misleading and dangerous, because the chance to diagnose and treat early gets passed over all too often.
That’s why early diagnosis is critical to the treatment of FASD/FDSD. By establishing developmental criteria for infants, FASD/FDSD can be detected early. Unfortunately, this only braces caregivers and treatment providers for what is to come. There is little anyone can do until those signs and symptoms of cognitive, behavioral and/or social limitations are manifested.
That is what makes living with these disabilities so difficult for the caregivers. There exist feelings of helplessness and anxiety, which are difficult to deal with when one knows that the child will one day be significantly impaired.
The only consolation is the fact that these disabilities can easily and clearly be prevented. All it takes is for expecting mothers to abstain from using substances while pregnant. Abstinence is the only method of prevention. There is no safe consumption during pregnancy.
But, alarmingly, drug and/or alcohol use among pregnant women is both significant and more common than we may care to admit. For instance, approximately 12 percent of pregnant women nationwide continue to drink alcohol during pregnancy, and this means 1:8 unborn children nationally are exposed and placed at risk for FASD. Likewise, about five percent of women nationally use illicit drugs while pregnant, making fetal drug exposure about 1:20.
In Nevada, roughly 26 percent of children are born exposed to alcohol and four percent of mothers continue using alcohol even after they learn they are pregnant.
Approximately one percent of children are born effected by alcohol each year, including 40,000 in the United States and 200 in Nevada.
In fact, it is estimated that an alcohol or drug exposed infant is born every 90 seconds. This represents a growing problem both here in Nevada and nationwide.
Founding father Benjamin Franklin is credited with saying that an ounce of prevention is worth a pound of cure.
Nothing could be more truthful about FASD/FDSD.
Prevention—and, therefore, awareness—is the key to curing these afflictions. Without it, there is no cure, and the problem will remain a chronic epidemic.
Although the state of Nevada funds diagnostic clinics for FASD and FDSD, money available to treat these disabilities remains inadequate.
Treatment is not curative. Rather it’s focused on maintaining quality of life by helping individuals afflicted with these disorders stay functional and productive.
In lieu of funds for treatment, the only practical solution is to increase community education, which, in turn, spreads awareness, consciousness, and, hopefully, zeal to do something about the problem.
But these children, left in the dust of a media blitz and forgotten by a frenzy of campaigns focused on other mental disabilities, need the help of those charged with responsibility for bringing the issue and its awareness to the fore; just as the advocates and activists promoting autism awareness have succeeded in doing.
This means that parents and family members, medical and other treatment professionals, social service advocates, journalists and lawmakers all have a fiduciary responsibility to speak for the children who cannot speak for themselves. We have a duty to be proactive in the fight to end a disability that is not only highly preventable, but that ought not even reasonably exist.
The spread of this disability, caused by the negligence of others, should be prevented at all costs. The fact that there are children born to mothers who exposed them to dangerous substances is unreasonable and unacceptable.
In contrast to autism, the cause and prevention of FASD/FDSD are crystal clear. We know what causes these disorders and we know how to prevent them. But we seem too busy studying other disorders to care that an ounce of simple education and awareness can produce a pound of prevention.
I am making a public appeal in the hopes of bringing this topic back to the surface where it belongs; alongside, and not behind, autism.
Please, let us not forget the other children.
— Brett Fisher is a cartoonist and writer who lives in Carson City. He and his wife, Lisa, have resided in the state capital for over seven years. They have fostered children exposed to alcohol and drugs en utero.