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Background
Just a few short years ago, little was known about the diagnosis, cause, and treatment of Autism Spectrum Disorders (ASD). Today, ASD is diagnosed in epidemic proportions: one in every 166 children. Despite the development of better ways to diagnose ASD, an increased knowledge about the different causes of ASD, and a growing body of treatment programs for individuals “on the spectrum” the long-term prognosis for those with the diagnosis remains gloomy. People with ASD have only a 10% chance of obtaining employment, less than a 5% chance of developing meaningful relationships, and even less of a chance of marrying and starting their own family. Most of these individuals do not live independently, but reside in group homes or with family members. Current treatments and research do not focus on these important quality of life issues.
To address this critical gap in autism treatment and research, Foundation for Autism Research & Remediation (FARR) was formed by Drs. Steve Gutstein and Rachelle Sheely in Houston, Texas in 2004. Clinical psychologists in practice for over 20 years, Drs. Gutstein and Sheely established a clinical practice to serve the many families whose lives were affected by autism. Despite a thriving practice and national reputations as experts in the field of autism treatment, they felt they needed to do more to help improve the outcome for people with autism. Toward that goal, FARR was developed. FARR is a 501(c)(3) non-profit public charity which supports research focusing on improving the quality of life for those with ASD.
FARR does not fund biomedical research, which currently receives the lion’s share of all funding dedicated to autism research from government sources. FARR’s mission is to fund research efforts in the development or evaluation of treatments focused on improving the quality of life (QoL) outcomes for people with autism. There are specific areas of QoL which receive special consideration for funding by FARR. These are social support, employability, independent living, self determination, and mental health.
Longitudinal Course of Autism
Autism is a devastating neurological disorder which was first described in 1943 by psychiatrist Leo Kanner. People with autism share a common symptom picture which includes severe deficits in social and emotional reciprocity, debilitating repetitive or ritualistic behavior patterns, and severe deficits in communication. Many children with autism are capable of average intelligence, but their symptoms severely impact their ability to go to school or participate in meaningful relationships. Autism is typically diagnosed in early childhood, and has a life-long course. The prognosis for those diagnosed is bleak. In 1968, Kanner presented a follow-up study of the 11 children on whom he first reported in 1943 (Kanner, 1971). He found that only two of his original subjects had what could be termed a satisfactory quality of life. Comparing Kanner’s findings to the findings of more recent follow-up studies (e.g., Howlin, 2003 and Shea, 2003), the outcome continues to look bleak for people with autism even with treatment.
More recently, the National Autistic Society of Great Britain completed the largest scale follow-up study on the course of autism ever conducted. The authors surveyed 450 individuals with autism, including people at both the higher and lower ends of the autism continuum, about their education, employment, living arrangements, and mental health. The survey concluded that only 3% at the high end of the spectrum live fully independently and nearly half (49%) live at home. The remaining portion live either semi-independently or in institutional care facilities. Only 10% can manage tasks of daily living without assistance. Regarding employment, only 2% at the low end and 12% at the high end of the spectrum work in full-time, paid jobs. Thirty-one percent have no social involvement outside of their family. Not surprisingly, 32% suffer poor mental health.
Another large scale survey conducted by Seltzer and Krauss (2002) in the US indicated that, of 405 children and adults along the autism spectrum, some behavioral symptoms and language delays improved over time, but issues of QoL, such as employment, independence, meaningful social support and mental health, posed persistent and major obstacles. Of adults 22 and older surveyed, 73% live with their parents while only 4% live independently and13% live semi-independently. Fifty-six percent live in a community residence, 23% live in congregate care, and 4% described “other” living arrangements. Regarding employment, 90% of those old enough to work could not gain/maintain competitive employment. Although 74% of adults and children sampled used phrase speech, 87% were unable to use gestures, 67% continued to use inappropriate statements or questions, 62% had difficulty making social overtures, 71% had difficulty offering comfort. A full 95% of children and adults surveyed had difficulty making and keeping friends (Seltzer & Krauss, 2002).
Mission Statement of the Foundation for Autism Remediation Research (FARR)
FARR’s mission is to influence how we think of autism by “raising the bar” and re-defining achieveable goals. We believe that, with proper remediation efforts, the great majority of people on the autism spectrum (which includes Autism, Asperger’s Syndrome and Pervasive Developmental Disorder) can attain productive, self-supportive employment, independent living and meaningful emotional relationships. Scientific findings indicate that the majority of people on the autism spectrum have IQ’s and speech within the normal range. Most will master traditional academic skills. Yet, despite these abilities, less than 10% are expected to gain full-time employment and less than 5% are projected to live independently. Friendships and relationships outside of the immediate family are rare and marriage is almost unheard of. Debilitating anxiety, hopelessness and isolation become the norm.
It is the strong belief of FARR that people on the autism spectrum can learn to overcome their challenges and successfully manage their lives in real-world dynamic, complex environments. However, to accomplish this ambitious mission, resources must be focused on developing effective educational methods addressing abilities previously considered out-of-reach for people with autism, specifically flexible thinking, problem-solving, learning from past experience, future thinking, emotional self-regulation, and experience-sharing communication.
FARR seeks to advocate for and support research aimed at developing effective remediation of these specific cognitive, emotional and social deficits which, despite years of research and existing intensive intervention services, continue to present overwhelming obstacles for the vast majority of people on the autism spectrum. FARR is specifically interested in scientific and programmatic efforts that seek to do the following:
• Instruct and empower parents and family members to help their children reach their potential
• Provide parents with tools needed to maintain quality of life for the entire family
• Develop educational curriculums, focusing on remediating core autism deficits, that can be transferred to school settings
• Develop consensual standards for defining and evaluating successful intervention, based upon reducing the degree to which autism impacts quality of life
• Identify and build abilities that are direct foundations for future quality of life
• Develop cost-effective methods providing affordable access to effective remediation to all families, regardless of their economic circumstances.
Attached is a list of sample projects that would be appropriate for FARR
A Sample of Potential FARR Projects:
Defining success:
1. Deriving a consensual definition of success in ASD treatment among autism researchers
2. Distinguishing the characteristics of successful adults on the autism spectrum
3. Measuring childhood developmental foundations of adult employability skills
4. Measuring the quality of life of children on the autism spectrum and factors that influence quality of life
5. Measuring the quality of life of adolescents on the autism spectrum and factors that influence quality of life
Determining predictors of success:
6. Determining critical ASD child factors that predict future success
7. Evaluating school curriculums for ASD students based upon preparation for future employability
8. Professional characteristics that predict treatment effectiveness with parents of ASD children
9. Determining the effectiveness of early school placement for children with ASD
Communication:
10. Increasing the experience-sharing communication ability of children on the autism spectrum
11. Methods of measuring effective verbal and non-verbal communication skills in real-life reciprocal communication contexts
12. Teaching ASD individuals to take responsibility for monitoring communication effectiveness
Family functioning
13. Measuring quality of life of families with an ASD child
14. Optimal methods for empowering famlies with the ASD diagnosis
15. Determining changes in family functioning that predict treatment success
Self-regulation
16. Optimal methods for developing self awareness and self-regulation in ASD
Social functioning
17. Measuring and developing foundational skills for future friendships of ASD children
18. Increasing the perspective-taking ability and desire of individuals on the autism spectrum
19. Methods for effectively teaching contextual awareness to ASD individuals
Thinking and problem-solving
20. Methods of successfully teaching ASD children to think flexibly & creatively in real-world problem situations
21. Developing effective reflection and future thinking abilities in children and teens with ASD
22. Measuring and improving the problem-solving ability of children with ASD in real-world situations
23. Methods for teaching ASD students to use “fuzzy” logic
24. Applying Sternberg’s principles of Dynamic Intelligence to the education of ASD students
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