Creating practices and policies to help advance the quality of

life for autistics.

Dr. Joshua Weinstein, Founder and CEO The International Center for Autism Research and

Education, ICare4Autism

ICare4Autism

Founded in 2004, ICare4Autism is a global charitable organization that works to drive powerful multidisciplinary collaborations among leading autism investigators worldwide by promoting autism awareness, research projects, conferences for leading researchers and educators, and programs for the community

The mission of ICare4Autism is to be the catalyst that drives collaborations among similar institutions globally to discover the etiology of autism, search for biologic and environmental causes, and, ultimately, work toward developing the best methods of detection and treatment

ICare4Autism Initiatives

The Model School, comprehensive educational center comprised of innovative approaches, international lecturers, university programs, workshops, diagnostic and teaching certificates, degrees and music and art programs.

The Autism E-Resource Center reaching everybody - The International Computer Analysis Program (ICAP4Autism) will be a global state-of-the-art real-time database system for health care professionals, educators, advocates, medical and education researchers, policy makers and families to access genetic, medical, education, policy resources and autism information

International conferences on Autism are being sponsored in various parts of the world such as Nigeria, Nepal, Moldova, Singapore, Panama, etc

International conferences that include medical and educational researchers, autism therapists and teachers, policy makers, autistics and families

A Legal Services Department will serve as a source for families, providing legal counsel and advocacy with regard to education rights and government services

The Autism Africa Initiative will facilitate early diagnosis and intervention, utilizing cost efficient technology and supplement the infrastructures already in place.

– Nigeria Autism Conference, Sept 2-5,2014

International Workforce Initiative - Collaborating with major workforce entities to develop the best practices in workforce development internationally and effective transition plans for people with autism and their families

– Autism Workforce Conference – June 2014 in NYC

The ICare4Autism: Pakistan project will increase awareness and diagnosis of autism in Pakistan and develop an Autism Center.

New Perspectives on AutismNeurodiversity view vs. deficit view

Neurodiversity view The neurodiversity movement was born out of the

autistic civil rights movement in the 1990s and led by autistic writers and activists, including Jim Sinclair, Judy Singer and Kathleen Seidel.

Portrays autism as a form of human diversity with associated strengths and difficulties; based on Schalock’s (2000) quality of life framework

Deficit view portrays autistic people as ill, broken, in need of fixing;

largely accepted by professionals without questioning its foundation and implications

Neurodiversity View

Describing neurology and individuality through diversity

Autistics are individuals with strengths and differences– Language, communications and social interaction

Detailed thinking Long term memory Ability to analyze complex ideas and patterns

– Sensory processing– Motor Skills– Reflective thinking, planning and self regulation– Managing simultaneous tasks– Understanding social behaviors– Planning daily living tasks

An equal rights issue –autistics do not want to be ‘cured’ of their neurological condition – they view it as differences not deficiencies. Thinking, learning, social functioning, and processing differences.

A natural human variation rather than a disease

Just as left-handed people have problems finding items that were designed for right-handed people, autistics have barriers to overcome such as sensory, social, and informational situations

Deficit View

A deficit view has been in place for the last century– Presents autistics as severely limited by neurological

impairment– Portrays them as individuals requiring fixing to

enable them to function normally– Ignores cognitive strengths, diversity, gifts and

talents– Still a predominant method utilized by many

professionals and academics

Today’s view

Combination / Fresh Outlook Neurodiversity view and self advocacy To empower those who may need help, as long as we are

aware of their abilities to learn and respect those abilities, we are on the right track

This leads to a new view of diversity for all With the right to a quality of life

– For ourselves and others The success of this requires societal change To some the neurodiversity view is controversial (because they

think it sounds too medical) –Pollak, D.(2009)

1. Autism and the Quality of Life

How do we define quality of life for autistics

The World Health Organization (WHO) defined quality of life as – “Individuals’ perception of their position in

life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns.” (WHOQOL, 1995)

2. Autism and the Quality of Life

Self Determination-giving autistics appropriate support and encouragement to advance their ability to communicate and socialize.

Communication skills are an essential component of self-determination and self-advocacy– One way to provide support would be to offer access

to technological devices such as Augmentative and alternative communication (AAC)

devices, IPads, assisted technologies including personal digital assistance (PDA), smart phones, apps, online communication devices, etc.

3. Autism and the Quality of Life

Social Inclusion Changing the perception of negative stereotyping Greater acceptance and understanding of their needs and strengths,

who they are as a person. To break the barriers and hostility against inclusion and society -Beardon

and Edmonds (2007) More adequately trained school systems to support autistics from

early intervention through college Better collaboration between mainstream providers and autism

providers including normal tasks and activities in the community, ie. Shopping, living independently, commuting to a job

– Social recreational activities

Studies show that kids involved in social clubs, extra curricular and community service in high school increased their friendships and employment opportunities after high school -Shattuck, P. and Hilfer, A (2013) The Journal: Autism

4. Autism and the Quality of Life

Personal Development Creating support resources for personal development Early introduction during adolescent years to define their

personal abilities and skills Early exposure and testing for attributes and skills for

employment Exposure to workforce opportunities Exposure to vocational and trade school, 2-year colleges, 4-

year colleges, professional certification programs Better support for personal challenges, planning and

organizing studies for future employment Educating on housing and dorm living Sensory and motor skill demands for college life

– Van Vergeizk-Klin, and Volkmar, (2008)

5. Autism and the Quality of Life

Interpersonal relationships includes developing friendships and social relationships

More resources for helping autistic adults with relationships Developing programs to support autistic people in face-to-

face social interaction Establishing relationships with families, siblings, peers, etc Solutions to the problem of being targets of bullying Teaching on how to identify and establish social boundaries Relationship based intervention to facilitate attachment,

bonding and a sense of relatedness –Hobson, R.P. American Journal of Ortho-Psychiatry (1990)

6. Autism and the Quality of Life

Emotional Well-Being Autistics have more Mental health disabilities

than non-autistic -Hagopian and Jennet, (2008)

– Depression rate among autistics over 35% or higher – Eaves and Ho, (2008)– The High rate includes bipolar disorder, anxiety

disorder, Obsessive-Compulsive Disorder (OCD) and schizophrenia -Gillot and Standon, (2007)

More study and more programs needed because of lack of resources and training related to these mental health disabilities

Rights

United Nations adopted the Convention on the Rights of Persons with Disabilities with the following general principles

1. Respect for dignity, autonomy, and independence of people with disabilities

2. Non-discrimination3. Full and effective participation in society4. Respect for differences and acceptance of persons with disabilities

as part of human diversity5. Equality of opportunity6. Accessibility7. Equality between men and women8. Respect for the evolving capacities of children with disabilities and

respect for the right of children with disabilities to preserve their identities

*1, 2, 3, 4 are often not observed

Enhancing Quality of Life

Collaboration is beneficial in advancing quality of life – The Autistic Self-Advocacy Network (ASAN)

supports researchers and professionals support resources for autistic people public policy advocacy, community engagement, and respect for neurodiversity

– American Institute for Learning and Human Development – Thomas Armstrong, Executive Director

The meaning of difference and disability depends on perspective and social context– "Many young adults on the spectrum are forced to learn the realities of self-advocacy

after high schools and entering the community, workforce, or higher education. Proper preparation through the use of active involvement in the IEP process can help smooth the way for those on the autism spectrum to lead fulfilling and productive lives to greater potential."  -Shore, Stephen (2012)

– “Autism is not a hard-wired impairment programmed into a child's genes and destined to remain fixed forever. It is the result of a cascade of events, many appear minor…to provide optimal nutrition, reduce toxic exposure, limit stress and open the door to learning and creativity.” – Herbert, Martha (2013)

Employment and Material Well-Being

Unemployment and Underemployment are higher among the autistic vs. the non-autistic population

Obstacles include– Managing the job-seeking and job application process– Acclimating to new procedures and routines for jobs– Mastering the social and communication demands of the

workplace– Handling the sensory demands of the workplace– Engaging in goal-oriented and reflexive thinking on the job– Lack of sufficient housing and living options

Improve daily living, employment, community and social acceptance

Workforce Programs

The Gersh Experience is a transitional residential program created for high school graduates with Asperger’s Syndrome and other autism spectrum disorders.

The Boston Higashi High School offers Day and Residential programs for students age 3 to 22 and uses Daily Life Therapy®

Walgreens first piloted hiring autistic workers at its distribution center in Anderson, South Carolina, in 2007, and since then the practice has spread throughout its facilities.

Project SEARCH High School Transition Program serves people with disabilities through an innovative workforce and career development model that benefits the individual, workplace, and community.

Specialisterne, (75% of employees have some form of autism) a consulting company whose mission is to create possibilities for those with autism spectrum disorder, helps SAP Labs hire autistic individuals to be software testers, programmers, and data quality specialists for its operations in the U.S., Canada and Germany.

"Only by employing people who think differently and spark innovation will SAP be prepared to handle the challenges of the 21st Century,“-SAP's board member, Luisa Delgado (2013)

Autistics in the Workplace

Those with autism tend to thrive when paying close attention to detail and following rules but have trouble improvising, says Ami Klin, chief of autism and related disorders at the Marcus Autism Center at Emory University in Atlanta. They also tend to be extremely reliable and have a strong work ethic.

“Being able to use computers for communication eliminates the stress of decoding non-verbal body language,” said Dr. Stephen Shore of Adelphi University and ICare4Autism. “Whereas face-to- face interaction requires the simultaneous processing of words, asynchronous communication does not. Recorded video, for example, can be reviewed as many times as possible to figure out the problem before offering a response.”

New Way of Working The next generation is being assisted with the help of the iPad and an abundance of apps.

“The sooner they use it, the bigger the benefit for the adult,” Shore said. “Intervention is key, but it is never too late,” he added, referring to how the apps greatly help cognitive functioning, for any age.

Closing the Gap The iPrompts app, created by HandHold Adaptive, is used by both schools and enterprises to

help autistic individuals improve attention to tasks through visual tools. HandHold’s technology has been piloted in U.S. schools with the support of the U.S. Department of Education and several research partners, including the Yale Child Study Center, UCLA and Southern Connecticut State University.

The current state of policies and practices that help autistics

The role of state, local and federal government How do we identify best training for individuals What policies exist? Autistics growing from adolescent to young adult

– Coming of age – Approximately 50,000 autistics graduate from high school each year -Hilfer, A. and Shattuck, P. (2013). Autism Journal

Workforce studies in the university (some exist but definitely needs to be expanded)

What are our expectations? What do autistics think and want? What are Workforce best practices?

The focus on the future

Practices and policies to help advance the quality of life for autistics

Identify applied research questions that can be turned into strategic studies to form the basis for adaptation in schools and workplaces

Tools and questions- what do we still need to know?

Where do we go from here?

The need for additional strategic studies Interventions and adaptations in

neurodiversity and the new view Educating autistics at primary and young

adolescent stage, young adulthood and in the workplace.

Applied research questions for strategic studies

Develop policies and interventions within schools, colleges and workplaces

To create polices and practices at local, state and federal government levels

More programs needed specifically for job support in terms of tutoring, coaching, mentoring –Shattuck, P and Hilfer, A (2013) – Autism Journal.

References

The Autism Program Quality Indicators (APQI) developed by the NY Autism Network at the request of the New York State Education Department,(2001)http://www.nysed.gov/vesid/sped/Autism/Autism.htm

Beardon, L., & Edmonds, G. (2007). The ASPECT consultancy report: A national report on the needs of adults with Asperger Syndrome. Sheffield, UK: Sheffield Hallam University, The Autism Centre.

Broderick, A. & Ne'eman, A. (2008). Autism as metaphor: Narrative and counter narrative. International Journal of Inclusive Education, 12, 459-476.

Eaves, L. C., & Ho, H. H. (2008). Young adult outcome of autism spectrum disorders. Journal of Autism and Developmental Disorders, 38, 739-747.

Gillot, A. & Standen, P. J. (2007). Levels of anxiety and sources of stress in adults with autism. Journal of Intellectual Disabilities, 11, 359-370.

Hagopian, L. P. & Jennett, H. K. (2008). Behavioral assessment and treatment of anxiety in individuals with intellectual disabilities and autism. Journal of Developmental and Physical Disabilities, 20, 467-483.

Herbert, Martha, (2013) The Autism Revolution, Random House.Herbert, Martha (2012). The Autism Revolution. Whole-Body Strategies for Making Life All It Can Be. Harvard Health Publications Harvard Medical

School: Ballantine Books, NY.National Autism Center (NAC) –USA   –for the National Standards Report - Project addressing the need for evidence-based practice guidelines for

ASDs http://www.nationalautismcenter.orgNational Symposium on Neurodiversity, Syracuse University, October 2, 2012Pollak, David, (2009) Neurodiversity and higher education. Schalock, R. L. (2000). Three decades of quality of life. Focus on Autism And Other Developmental Disabilities, 15, 116-127.Shattuck, P. and Hilfer, A. (2013) Autism Journal. Van Bergeijk, E., Klin, A., & Volkmar, F. (2008). Supporting more able students on the autism spectrum: College and beyond.

Journal of Autism and Developmental Disorders, 38, 1359-1370.World Health Organization Quality of Life Group (WHOQOL). (1995). The World Health Organization Quality of Life Assessment

(WHOQOL): Position paper from the World Health Organization. Social Science & Medicine, 41(10), 1403-1409.