Rite of Passage - The Massive Challenges Facing Young Adults With Autism
For centuries every generation has looked forward with great anticipation to the day of personal emancipation. Reaching adulthood signals a time of personal freedom for adolescents around the world. Having the freedom to come and go as one pleases is the ultimate accomplishment for young adults. However, not all young people are transitioning well into an adult world full of hope. The first wave of young people diagnosed with Autism Spectrum Disorder is now entering adulthood with more questions than solutions. It is estimated 1.5 million people in the United States have some form of autism. The number explodes to somewhere between 5-10 million worldwide, depending on access to public health records. Although several theories related to what causes autism have been presented, there is still no conclusive medical evidence identifying a cause.
The current employment outlook for autistic adults is dismal. Some analysts estimate the unemployment rate for adults with autism spectrum disorder to be as high as 70%. Clearly, the need to educate employers and political leaders regarding the benefits of hiring members of this group is exigent. As societal norms have changed, the expectations for autistic adults to live fully inclusive independent lives have also risen. Working is one of the cornerstones upon which adulthood is built. The unique skills and abilities individuals on the spectrum possess are needed in today's high tech global environment. For example, many positions require great attention to details, exceptional computer skills, and may involve telecommuting or working from a remote location. These are areas of strength for most people with autism. Moreover, the twenty-first century job market is results driven, which leads to the need for intense bottom line oriented focus. The type of focus needed in many instances requires greater intensity over shorter periods of time, or "productivity bursts". In a study conducted by a European employment firm, the results indicated autistic employees use the same amount of energy in 25 hours that typical employees spend in 40 hours. But autistic employees expended energy in a dramatically different fashion from typical associates. The autistic group worked for shorter periods of time fully focused on the tasks at hand with few interruptions or a need for socializing. Typical employees, on the other hand, spent more time on social activities such as telephone calls, sending e-mails, and texting.
The other major life changing event that symbolizes the transition to adulthood is living independently. The need for residential housing for adults on the Autism spectrum will grow exponentially over the next quarter century. As parents age, caring for adult daughters and sons at home may no longer be a viable option. The cost of health care will continue to rise, thus making home care extremely difficult for many families with strained financial resources. Moreover, parents may have health related issues themselves that preclude caring for an adult child with special needs. Keep in mind the emerging autistic adult population will live with parents in most cases until the death of a parent or the child occurs. Group homes will be the most popular, and affordable, choice to meet the growing demand for special needs housing. However, stricter enforcement of regulatory standards is needed in community based settings to ensure compliance. It should be noted not all autistic adults will live in small community based facilities or at home with parents. Some will choose to live in more structured environments such as assisted living and supportive living communities.
The evolution of long term care will continue to grow as the industry adapts to the sensibilities of residents on the autism spectrum. There are two distinctive features that make autism care facilities of the future different from the current model. First, the average age of residents will be much younger than the population of traditional nursing homes. Following years of declining birth rates, and delayed conceptions, the result is a generation of children with older parents. Further, the support network of the nuclear family unit is no longer present for many families - making a residential care facility the most appealing option.
The most daunting challenge for most parents is providing for the long term financial needs of their special needs child. In view of the tenuous nature of Social Security, Medicare, and Medicaid it is crucial that families have a solid plan going forward. Working with a financial planner specializing in special needs is growing in popularity. The professional guidance provided by experts in this area covers issues over the course of a lifetime such as medical, transportation, socialization, and career options. In addition, many families are establishing special needs trusts as a means of ensuring future financial security. Special needs trusts are not without flaws as they can be restrictive and expensive to fund. The important decisions made today will impact the quality of life for an autistic child for years to come. As awareness grows, our response to this segment of the population must also evolve before we can encompass the true meaning of inclusiveness. Yet, the standard is not compromised in giving every young adult the opportunity to pursue their dreams. That is the true meaning of freedom.
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