Autism and the Heartbreaks it Brings
What exactly is autism? According to the National Institute of Neurological Disorders and Strokes (NINDS), Autism Spectrum Disorder (ASD) or simply autism, is a range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior. It is a wide-spectrum disorder, which means that its type, degree and symptoms vary from one person to another.
A person with autism interacts with other people quite differently. A person suffering a mild form of autism might be seen as someone who is clumsy, lacks tact, or is generally living in his/her own self-made world. Those suffering from a more severe form do not show any interest in other people at all. They often miss social signals that other people give them and might not acknowledge people who are talking to them. People suffering from autism have trouble adapting to their environment. They find it difficult to socially adjust daily to their surroundings and they have problems communicating.
In the U.S., 1 in 88 children and 1 in 54 boys are affected with ASD. According to the National Institute of Health (NIH), autism is the fastest-growing serious developmental disability in the U.S. and cost each household $60,000 annually. Last year, the NIH’s total budget is $30.86 billion. Of this, only $169 million goes to ASD research or 0.55 percent of NIH funding. This is a very unfortunate considering that autism receives less than 5 percent of research funding. The lack of funding results in less medical attention and identify possible cure.
Causes of ASD: Nature Versus Nurture?
Current research on what causes autism is far from complete. Scientists could not pinpoint exactly if it is purely caused by genetics or by environmental factors. In some studies, researchers found a number of genes that may have caused ASD. They found irregularities in several regions of the brain of people with ASD.
According to another study, there are abnormal levels of serotonin – a hormone that plays an important part in regulating learning, mood, and sleep among others – in the brain. The abnormal levels suggest that people with autism suffered from a disrupted normal brain development during fetal stage and may have caused defects in brain growth. However, these are all preliminary findings and further study is encouraged.
Parents of autistic children notice a developmental problem before their child’s first birthday. They were concern about vision and hearing and were more often reported in the first year. Part of the parents report would include observations in differences in social, communication, and fine motor skills that become evident from 6 months of age.
In a study conducted by the Centers for Disease Control and Prevention’s (CDC) Autism and Development Disabilities Monitoring (ADDM) network, research has shown that autism can be detected as early as age 2 and is deemed reliable, valid and stable. What is alarming, though, is that more children are being diagnosed by the age of 3 which is equivalent to 18 percent.
Unfortunately, most children are not diagnosed until after they reach age 4. Diagnosis is a bit earlier for children with autistic disorder (4 years) than for children with the more broadly-defined autism spectrum diagnoses (4 years, 5 months), and diagnosis is much later for children with Asperger Disorder (6 years, 3 months).
Another aspect of the ADDM study shows that among identical twins, if one child has autism, there is about 36-95 percent chance that the other will be affected. For non-identical twins, the other is affected about 0-31 percent of the time. Parents who have an autistic child have a 2–18 percent chance of having a second child who is also affected.
The study also shows that autism tends to occur more often in people who have certain genetic or chromosomal conditions. About 10 percent of children with autism are also identified as having Down syndrome, fragile X syndrome, tuberous sclerosis, and other genetic and chromosomal disorders, while those children born to older parents are at a higher risk to for autism.
Autism commonly co-occurs with other developmental, psychiatric, neurologic, chromosomal, and genetic diagnoses. The likelihood of co-occurrence of one or more non-ASD developmental diagnoses is at 83 percent. The co-occurrence of one or more psychiatric diagnoses is 10%.
Impact on Individual and Family
Autism has an impairing impact on both its sufferers and their families. Earlier, it was mentioned that an autistic person suffers social impairments. The impairments make it difficult for autistic individuals to understand what is happening around them and are unable to predict what will happen next. As a result, they become listless, insecure, and anxious everyday and they express these through obsessive behaviors to reduce stress.
Autistic individuals often fail in school and work. They often lack confidence and exhibits very low self-esteem. Autistic children are very vulnerable to abuse because they cannot socially adjust and mingle. They are often bullied and taken advantage of. When they age and become adults, they are misunderstood while some commit felonies due to lack of social understanding.
At the level of the family, it is difficult for parents to bring their children in public places. Autism is a disability that cannot be easily and visibly seen, which makes it easier for the general public to pass judgments against those exhibiting autistic behavior. Most of the time, the general public is quick to assume that an autistic child suffers from lack of good behavior or that the child’s parents are failing on the parenting department.
To avoid social stigma and discrimination, majority of parents whose would leave their autistic children at home. The children become socially isolated, usually with other siblings, and this isolation results in negative effects on both their social and emotional well-being.
Taking care of an autistic child is also financially challenging. According to the ADDM network, autistic individuals had average medical expenditures that exceed those without it by $4,110-$6,200 per year. Families with a relative suffering from autism would spend 4.1-6.2 times greater than those families without autistic members. The study also reports that in 2005, the average annual medical costs for Medicaid-enrolled children with autism were $10,709 per child – six times higher than costs for children without autism. In addition, intensive behavioral interventions for autistic children cost $40,000 to $60,000 per child annually.
Besides the economic cost, having an autistic family member is emotionally and physically taxing. Nothing is far more heartbreaking for a parent than to see his/her child missing out on life. Parents find it hard to best help their autistic child and the difficulty also takes a toll on the child’s siblings. One of the parents would quit work to take care of the autistic child and overtime suffer insurmountable amount of stress because of the financial burden associated with it. It is also physically difficult for parents to look after their autistic children because the latter requires non-stop supervision. Once these children grow older, their tantrums are hard to manage, which leads to parents becoming more depressed to the point of breaking.
Siblings of persons with autism suffer, too. They also miss out on social activities because they often end up taking care of their afflicted sibling. It is well-documented that siblings of autistic children also suffer long term psychological effects. Siblings, like other normal human beings, need some time away from a stressful environment and engage in holistic social activities.
What Can Be Done?
Unfortunately, autism remains incurable and there are no medications and procedures that can treat its core symptoms. However, there are medications that can help those with autism to function better. The Food and Drug Administration, for example, has approved several drugs that might help autistic people to effectively manage high energy levels, inability to focus, minimize depression and address seizures.
However, caution should be taken because there are no across the board, one-size-fits-all medication to treat autism and the effects may vary. It is highly suggested that family members who are looking for treatment for their afflicted kin should work closely with health care professionals who have to experience and expertise in treating people with autism.
Both parents and health care professionals should closely monitor the progress and reactions of the autistic child while he/she is undergoing medication. In this way, negative side effects of the treatment can be detected at the forefront and make sure they do not affect the treatments intended benefits.
For autistic children, it is important to note that they need to receive regular and dental checkups just like other normal children. It is often hard to tell if the behavior is autism-related or is due to a separate health concern. For example, it is common that an autistic child would bang his/her head against a door. It could be the result of autism acting up or it could simply mean that he/she has headaches. To monitor a child’s developments does not mean looking for bad signs, but also to pay attention to the child’s overall well-being.
It is definitely hard work, but research shows that early intervention treatments can improve the development of an autistic child. Once detected from birth to 3 years-old, it is important that parents are invested to engage their child to learn important skills. This would include talking, walking, and interacting with the child as often as possible. More importantly, parents should notify their child’s doctor immediately if they think their child is autistic or exhibits other developmental problem.
The American Academy of Pediatrics and the National Research Council have an interesting approach to help autistic children how to behave and communicate. They use applied behavior analysis (ABA) – a system that provides structure, direction, and organization for the child together with his/her family. ABA is widely accepted among health care professionals and is used in many schools as well as treatment clinics. The approach encourages positive behaviors while discourages negative ones to enforce different skills. In this way, the child’s progress is monitored and measured.
ABA has different types. These are (a) Discrete Trial Training (DTT) that uses a series of trials to teach appropriate behavior or response; (b) Early Intensive Behavioral Intervention (EIBI) that is used for very young children below five years-old and often younger than three years-old; (c) Pivotal Response Training (PRT) that aims to increase the child’s motivation to learn, be conscious of his/her own behavior, and encourage talking with other; and (d) Verbal Behavior Intervention (VBI) that focuses on teaching verbal skills.