Introduction
Autism affects 1 out of every 150 births in America; it is classified as the fastest-growing developmental disability worldwide. It is a brain development disorder characterized by impaired social interaction and communication, and by restricted and repetitive behavior. The prevalence of Autism is about 6 per 1,000 people, with about four times as many males as females. The number of people known to have autism has increased dramatically since the 1980s, partly due to changes in diagnostic practice; the question of whether actual prevalence has increased is unresolved (Newschaffer et al, 2007). Autism is defined in the DSM-IV-TR as exhibiting at least six symptoms total, including at least two symptoms of qualitative impairment in social interaction, at least one symptom of qualitative impairment in communication, and at least one symptom of restricted, repetitive behavior (DSM-IV-TR).
Autism-related services and care is estimated at around 90 billion dollars a year. The expected annual cost in the next 10 years is expected to cost between 200-400 billion dollars. 80 percent of the care and financial resources have been directed at adult services. Research shows that the cost of long-term care can be reduced by 2/3 with early diagnosis and the right intervention. This paper will discuss the four primary practical methods that parents that are raising children with Autism can perform to ensure a better quality of life for their children that have been diagnosed with autism.
Diagnosis
The word Autism first took its modern sense in 1938 when Hans Asperger of the Vienna University Hospital adopted Bleuler’s terminology, autistic psychopaths, in a lecture about child psychology (Asperger 1938). Leo Kanner of the Johns Hopkins Hospital is credited with the first use of the word Autism in the English language. He used the term early infantile Autism in a 1943 report of 11 children with behavioral similarities (Kanner 1943). Nearly all the characteristics described in Kanner’s paper on the subject remain the typical description of the Autistic spectrum of disorders (ASD).
Diagnosis of Autism is based on patient behavior not cause or mechanism. Some sample symptoms include the lack of social or emotional reciprocity, stereotyped and repetitive use of language or idiosyncratic language and persistent preoccupation with parts of objects. For these symptoms to be considered possible Autism they must occur prior to the age of three. Two of the most common methods of diagnosis are the Autism Diagnostic Interview-Revised or ADI-R and the Autism Diagnostic Observation Schedule or ADOS. The former is a semi-structured parent interview while the latter uses observation and interaction with the child.
The attending pediatrician commonly performs a developmental history and physical exam of the child. If so warranted the diagnosis and evaluations are done with the assistance of an ASD specialist, observing and assessing cognitive communication, family and other variables using standardized tools and taking into account any other potential medical conditions (Dover et al 2007). The pediatrician must be careful not to rule out another possible diagnosis for the patient’s condition such as mental retardation or hearing problems or language impairment.
As mentioned earlier the family pediatrician is able to make an initial diagnosis of the child. However, it is important for the doctor to seek the opinion of other experts and consider another possible diagnosis before he is able to determine that Autism is the true cause of a patient’s illness. Autism can be diagnosed as early as 14 months but the diagnosis is most reliable by around the third year of life. Although the median age of diagnosis in the United States is a high of 5.7 years. The reason that diagnosis occurs late is that many symptoms of Autism can often be mistaken for other developmental disorders or simply below average rate of development of the patient.
Errors in diagnosis can be problematic especially in borderline cases, new developments in diagnostic practice may lead to an erroneous diagnosis of Autism. The availability of drug treatment options and the expansion of benefits have given providers an incentive to diagnose Autism in children provided they meet some of the basic symptoms. Regrettably, laws enacted to improve the quality of life and benefits of Autistic people can actually provide an incentive for non-Autistic people to claim Autism if only to claim those benefits.
The high cost of diagnosis and screening, conversely, is a source of underdiagnosis. Not all insurance plans cover the cost of Autism diagnosis and those from the lower-income spectrum may not be able to afford proper screening procedures to detect autism. (Shattuck 2007)
The following behaviors can be indicia of autism:
- Stereotypy or repetitive movement such as making sounds, head rolling or body rocking.
- Compulsive behavior that connotes arraigning objects in a particular manner.
- Sameness or a resistance to change or being interrupted.
- Ritualistic behavior – performance of daily activities in a consistent manner all the time.
While the presence of these trains might not always be conclusive, as they may simply be signs of eccentric behavior, the presence of some or all of these symptoms may because to have a specialist check the child.
Treatment
Autism is not an actual disease or infection where drugs can be used to terminate the offending organism. Instead, treatment of Autism focuses on therapeutic attempts to lessen the deficits and family distress that is often associated with Autism. Treatment is also designed to increase the quality of life and functional independence of the patient. Treatments fall into two major categories educational interventions and medical management. Training and support are also given to families of those with ASD. (Myers 2007)
Generally speaking the educational interventions aspect involves the belief that because of their impaired social skills an autistic person needs special interventions in order to cope. This view finds basis in fact due to traditional education, at the early stages, being heavily dependent on interactions between the teacher and the students. At this level, Autistic students and the treatment they need is not much different from that of other children with impaired learning ability.
Medication is used to treat problems associated with ASD. About half of the ASD-positive children in the United States are given anticonvulsants or psychoactive drugs such as stimulants, anti-depressants and anti-psychotics.
Regrettably, the cost of treatment is prohibitive. For someone who was born in 2000, the estimated lifetime cost of treatment is $3.75 million. As a caveat about 60% of that cost is lost productivity with only 10% being actual medical care and the remaining 30% stemming from education and other care.
Coping
The number of children in the United States diagnosed with Autism Spectrum Disorders (ASDs) has increased in recent years, and current estimates indicate that about 1 in 150 children has an ASD (Centers for Disease Control and Prevention [CDC], 2007). ASDs include autism and two less severe disorders: Asperger Syndrome (AS; also referred to as Asperger disorder) and pervasive developmental disorder not otherwise specified (PDD-NOS; CDC, 2006).
The most difficult reckoning point will be coming to grips with the existence of the condition. Coping is mainly an issue of personal acceptance of the existence of the condition coupled with an openness to discuss the condition with friends and family. Many instances of odd behavior by the patient can be explained by the existence of the condition. By allowing the Autism to be known it is hoped that the people surrounding the patient will be better able to understand his unique situation and able to make allowances for his extraordinary behaviors caused by his Autism.
Perhaps the greatest area of difficulty is the fact that Autistic persons feel that they are not normal. Portway and Johnson (2002) researched the life stories of 25 young adults with AS and their parents. The study explored the expressed feelings of participants that they appeared to be ‘normal’ but did not quite ‘fit in’. The authors raised important questions concerning the reasons for this perceived ‘lack of fit’ – did the experience arise solely from the attitude and behaviors of others toward the young adults, did the individual feel different regardless of the behavior of others, or was there some interaction between the two? It was suggested that two risk types associated with the experiences of people were contributing to their research every day and longer-term risks. Everyday risks were those arising from the perceptions of others and included being misunderstood, teased, ridiculed and ostracized. Longer-term risks were cited as including underachievement, risks to emotional wellbeing and over-dependence of people with AS on their parents. Once these risk factors have been dealt with an Autistic young adult can move on to normal adulthood.
The Years Ahead: Adults with Autism
Autistic adults and children have essentially the same needs. With proper care, they are able to develop normally and at pace with others of their age group. The main difference is when the Autistic person reaches adolescence his lack of social awareness gets highlighted. This highlighted lack of social awareness has been an area frequently studied when research is carried out with adults with autism. It has been discussed that a lack of such social abilities can become particularly problematic around adolescence when people with autism become increasingly aware that they are different from others and do not ‘fit in’. Folstein proposes that such a lack in social abilities leads to many adults with autism being under-employed relative to their measured intelligence, a premise reflected in several of the postings by people with Autism to the discussion groups (Folstein 1999).
Like any other person, higher education is a desirable end to improve a person’s chances for later professional development. It is fortunate that participation in postsecondary education is viable as more individuals with AS than members of the general population have IQ scores measuring in the superior to very superior ranges (Barnhill, Hagiwara, Myles, & Simpson, 2000). For many talented youths with ASD, their intellectual capabilities may become a critically important domain essential to their feelings of self-worth. Indeed, for those youth who are identified as twice-exceptional learners participation in advanced programs becomes a significant source of their self-esteem (Myles & Adreon, 2001). Consequently, as they see peers planning for postsecondary education, it seems quite likely that this also would be an important aspiration for these high-functioning youth with ASD. Therefore, it is not surprising for an Autistic person to move on to higher education and become competitive with the non-autistic person in professional careers.
People who have been diagnosed with Autism can still live full lives despite the limitations imposed on them by the disease. Special arraignments need to be made for the safety of the autistic person in a normal residential setting. However, they are not much more invasive than preparations made to protect geriatrics or those other differently-abled people. Employment opportunities are still available, the only caveat being that the patient must disclose his status to the employer in order for the employer to make the appropriate arraignments at the workplace and to provide the employee the legally mandated benefits.
People who have Autism are still able to live full lives and can even have sophisticated communications through the media. Through employing alternative modes of interaction, people with AS could play an active role in strategies designed to assess their needs, and these modes could have a central role in discussions concerning the provision and support that may be offered to them. Two distinct alternative forms of communication have been proposed to give fuller communications faculty to Autistic persons. The first involves interactions that make effective use of computer-mediated communication and the second, the use of a social interpreter in order to facilitate engagement in social interactions. In both situations, the autistic person becomes better understood despite his handicap (Brownlow et al 2009).
Conclusion
Autism is a disability, that being said it does not have to mean that an autistic person must be forever left in the closet as a crippled person. Diagnosis even at an early age is now possible. Thanks to an early diagnosis a child may be treated to deal with his condition quickly before the deficiencies caused by autism become too severe. This paper has discussed numerous means of coping which allow Autistic people to enjoy a quality life. Advances in modern science and psychology have allowed for new innovations that assist those who are autistic in coping with their peculiar circumstances. Modern practices also instruct the family of the autistic on how to cope with the condition of their loved ones. With proper treatment, an autistic person can expect to live a long quality life. To do so requires not only his fortitude but also the understanding and patience of those who will be around him.
Reference
Newschaffer CJ, Croen LA, Daniels J et al. (2007). “The epidemiology of autism spectrum disorders”. Annu Rev Public Health 28: 235–58. Web.
Asperger H (1938). “Das psychisch abnormale Kind” (in German). Wien Klin Wochenschr 51: 1314–7.
Kanner L (1943). “Autistic disturbances of affective contact”. Nerv Child 2: 217–50. Reprinted in Acta Paedopsychiatr 35 (4): 100–36. 1968. PMID 4880460.
Dover CJ, Le Couteur A (2007). “How to diagnose autism”. Arch Dis Child 92 (6): 540–5. Web.
Shattuck PT, Grosse SD (2007). “Issues related to the diagnosis and treatment of autism spectrum disorders”. Ment Retard Dev Disabil Res Rev 13 (2): 129–35. Web.
Brownlow, Charlotte. O’Dell, Lindsay Representations of autism: implications for community healthcare practice. Community Practitioner 2009. Vol. 82,
Folstein SE Autism. International Review of Psychiatry, 1999;11:269-77.
Barnhill, G., Hagiwara, T., Myles, B. S., & Simpson, R. L. (2000). Asperger syndrome: A study of the academic profiles of 27 children and adolescents. Focus on Autism and Other Developmental Disabilities, 15, 146153.
Portway SM, Johnson B. Do you know I have Asperger’s syndrome? Risks of a non-obvious disability. Health, Risk and Society, 2005; 7(1): 73-83.
Myers SM, Johnson CP, Council on Children with Disabilities (2007). “Management of children with autism spectrum disorders”. Pediatrics 120 (5): 1162–82. Web.