Autism Patient Advocate, Navigator or Health Advocate
The concept of patient advocacy in its current form was developed in 1950’s as the treatment of patients grew more and more technically complicated, as a means to make the voice of the patient more readily heard. In today’s world of constantly evolving medical techniques, treatments, and services, the average individual cannot be expected to be thoroughly acquainted with any and all this material. So it becomes the function of the autism patient advocate to perform a variety of services to ease the burden of the patient, and their family, as they learn to deal with every aspect of the disease.
The primary concern of the autism advocate is the support of the patient in all aspects of life with the disease, whether they be physical, emotional, or financial. An advocate can assist the patient in investigating available treatment options and educating the patient on the efficacy of each of them, be it pharmacological or surgical. By educating the patient, the advocate can be of great assistance in helping them make an informed decision about their course of action, and the possible side effects and outcomes. Support may also involve recommending counseling services for the patient, and their family members, to help them cope from day to day. Autism patient advocates may also be of assistance in helping the patient, and their caregivers, deal with any physical debilitation resulting from the disease, and its treatment.
Another aspect of autism patient advocacy is assistance in navigating the financial aspects of treating the disease. An advocate can act as a liaison between the patient and his or her insurance company, assuring that the patient receives any and all benefits to which they are entitled. When one is dealing with a serious disease, it is quite easy to lose track of other aspects of your life. An advocate can help to seek out sources of assistance which can ease the financial burden of the patient.
Education is also a major function of a health advocate. Both the patient, and their caregivers, are often in need of information about how the disease will affect their lives, both during its progression, and in its aftermath. Patients must be informed about how their condition will affect their mobility, the ability to care for themselves, and if they will be left with any permanent impairment to their lifestyle. Caregivers need to be instructed in mechanisms, or techniques they must use to cope with the patient’s daily care, such as injections, proper care of surgical dressings, etc.
The patient, above everything else, needs to know that there is someone in their corner. Someone who will help them find their way through the confusing, and sometimes daunting, world of modern medicine. Someone who will have their best interests in mind as they face challenges presented every day in their struggle to find, secure, and finance the best treatment available.
What is Autism?
Autism, better referred to as autism spectrum disorder is a serious condition that affects the development of neurological functions. It affects the patient’s social activities and even personal ones. A common sign is restricted repetitive behavior. Previously, autism, Asperger’s syndrome, disintegrative (childhood) disorder as well as other unspecified pervasive disorder were treated as different conditions but are now considered together under the autism spectrum.
· Unresponsive to their name or fails to hear at all
· Child may show loner tendency opting to do things on their own and are unresponsive to affection display
· Delayed milestones like speech
· May lose already learned speech
· May speak in an unusual way.
· Failure to follow simple instructions
· May show abnormal food preferences.
· Can be abnormally fixated on an object or activity.
· May show abnormal tolerance to pain while being unusually sensitive to harmless things like light or sounds.
Some of these symptoms may wane with time while others may persist into adolescence. Though slow learners some can show normal or even high intelligence.
Causes and Risk Factors
In view of the many and varying degrees of symptoms, the cause or causes are not known. There may be many causes that are promoted by environmental factors. Genetics are thought to play a role in the conditions development.
Genetics are thought to involve several genes for autism to occur. Rett syndrome or fragile X syndrome is a major suspect.
Suspected environmental factors include pollutants, difficulties during delivery and certain viral infections. This however, is under ongoing research.
Some people have claimed that there is a connection between measles vaccine and autism. Other scientists have not proven this and so the controversy continues.
Other risk factors include
· Gender. Boys are affected more.
· Preterm babies.
· Family history of the disease
· Presence of other inherited disorders.
· Age of parents at time of getting the baby. Older parents appear to have higher chances of getting an autistic child. This is also controversial.
Diagnosis is difficult since the symptoms are so varied. There are no classical symptoms that can form a pathognomonic pattern to ease diagnosis making.
Observation of the baby is important as you will be able to note pattern of speech, social interaction and ability to do things relevant to your child’s age.
Qualified health personnel can be helpful in determining whether the baby has a problem or not. Pediatricians, speech therapist and even occupational therapists can all help.
Genetic testing will help confirm or rule out whether the baby has a genetic problem or not.
Treatment aims at reducing the autism symptoms. It also aims at helping the child grow and develop as normally as possible. It includes:
· Behavior and communication therapies
· Family therapies. Family members are taught how to play and interact with the child.
· Educational therapies. This is done by specially trained teachers who give the child individualized attention.
· Drugs. Appropriate medications may be given to deal with signs like depression, anxiety or behavioral problems.
· Supplementary therapies include creative, sensory-based, special diets, acupuncture and chelation methods (removal of mercury and other heavy metals from the body).
U.S. Statistics of autism
CDC in 2014 indicated that the rate of autism is 1:68 births.
More than 3.5 million Americans live with autism spectrum disorder.
Prevalence in children increased by 119.4% between the year 2000 and 2010