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- 1. Autism Skyward: A University Transition Program for Students on the Spectrum Joseph Z. Sheppard University of Victoria Copyright © 2013-‐2014
- 2. 2 “Our purpose is to make UVic a destination campus for students with ASD” Dr. James Tanaka (Globe&Mail, 2012)
- 3. 3 Contents Introduction ................................................................................................................. 4 Low Cost Funding Model .............................................................................................. 6 Value Constitution ....................................................................................................... 8 Framework Licensing ................................................................................................... 8 Academic: .................................................................................................................. 10 Overview Booklet for University Autism Service Offerings ................................................................. 10 Academically-‐Related Neurological Assessments .................................................................................... 10 Autism Leadership and Transition Semester Credit Course ................................................................ 12 Graduate Planning Workshops ......................................................................................................................... 17 Post-‐Academic Follow-‐up Services ................................................................................................................. 18 Career: ....................................................................................................................... 21 Career Counseling & Planning ........................................................................................................................... 21 Autism Centre Volunteering Opportunities ................................................................................................ 21 Work-‐Ready Program ........................................................................................................................................... 22 Work-‐Studies Designed for Persons with Autism .................................................................................... 23 Autism Specialized University Co-‐op ............................................................................................................. 23 Job Placement Program & Employer Education Program .................................................................... 23 Social: ........................................................................................................................ 25 University Open House for Potential Applicants ...................................................................................... 25 Student Peer-‐Support Group ............................................................................................................................. 27 Mentorship Program for Students with Autism ........................................................................................ 28 Social Skills Workshop ......................................................................................................................................... 29 Autism Political Engagement ............................................................................................................................. 30 Supports: ................................................................................................................... 32 Parent Autism Advocacy Group ........................................................................................................................ 32 Integrated University Supports ........................................................................................................................ 33 Learning Coach Autism Training Program .................................................................................................. 34 Digital Time-‐Management Workshop ............................................................................................................ 37 Speaking about Autism Community Outreach ........................................................................................... 38 Growth: ..................................................................................................................... 40 Personalized Self-‐Assessment ........................................................................................................................... 40 Academic Journal for Persons with Autism ................................................................................................. 41 Annual Autism Cultural Event ........................................................................................................................... 41 Partners in Research ............................................................................................................................................. 43 Health: ....................................................................................................................... 44 Health Information ................................................................................................................................................. 44 Emergency Contact Number .............................................................................................................................. 45 Exercise Groups with Health Education Opportunities ......................................................................... 46 Nutrition Education Workshop & Grocery Assistance ........................................................................... 47 Food Augmentation Programs .......................................................................................................................... 48 Housing Sign-‐Up Assistance & Financial Planning Assistance ............................................................ 48 References .................................................................................................................................................................. 50
- 4. 4 Introduction Autism first appears in early childhood and restricts everyday functioning, affecting social-‐emotional reciprocity, nonverbal communication, maintenance of relationships, and may exhibit symptoms of stereotyped or repetitive movements and speech, fixated interests, strict adherence to routines, and hyper or hypo reactivity to environmental stimuli. Students with autism often require specialized supports to succeed in an academic or workplace setting. Autism Skyward is a multi-‐domain university support intervention aimed at assisting students with autism from the moment of entering university to work placement. The core organization of the Autism Skyward university-‐mediated intervention is constructed over six domains. Each domain is designed to build capacity in a core quality of life factor. These domains are 1) academic achievement, 2) job preparation, 3) social involvement, 4) supports acquisition, 5) self-‐actualization, and 6) health optimization. Each domain contains an upward ladder of intervention modules that can be accessed depending on the custom needs of each individual. Moreover, the six domain ladders do not require linear or hierarchical progression; therefore, higher rung intervention modules can be accessed before lower rung interventions as needed by each individual. Each domain ladder is further customizable so institutions are able to adapt the model to their specific requirements and cultures.
- 5. 5 The purpose of this program is to provide a structure of effective supports for students with autism beginning with a welcoming open house orientation and ending with successful job placement. This program is modular and, therefore, consists of functional units that can be analyzed and improved using empirical research methods. A need to help ameliorate severe atypical negative future outcomes for the spectrum population constitutes the rationale for proposing this program. A lifelong cost of autism per person on the spectrum is $3.2 million. The majority of this cost is due to adult care and lost economic productivity (Ganz, 2009). Estimates are that about 1% of the worldwide population has autism (CDC Website, 2013). Autism Speaks estimates that the cost of autism is $126 billion per year in the United States. Most of these costs are related to adult autism. Generalized to Canada costs are around $12 billion lost per year (Mandel, 2013). Service use has a steep decline after High School (Lawer, 2009) from around 80% to less than 10%. Without comprehensive plans for mass intervention in place there is little reason to predict outcomes will change. An idea foundational to this proposed adult transition model of support comes from Peace Psychology approach that designs interventions to assist whole townships that have suffered trauma. A furthering of this idea is to design a way for a university institution to act as a single interventionist that is capable of supporting all of its autism student population in a manner that greatly alters their predicted outcomes for the better.
- 6. 6 Low Cost Funding Model One of the key components to a successful transition program is for students to be empowered to find and develop their own solutions to challenges rather than be considered as helpless or infantilized. It is important that students with autism are seen as resourceful, resilient, and able to meet challenges independently. There are societal reasons that adult autism services are sparse. Early education is mandated to offer equal opportunity so resources are allocated to supports that level the playing field. This societal value is continued to the university level although is currently placated by the unique grants, accommodations, and disabilities policies governing university policy. The lowest functioning portion of the autism population has basic care supports designed to make the social safety net and health services as services provided equal to all. However, most adult autism needs fall outside the purviews of these core societal values. It is important that adults with autism recognize these societal priorities or they risk waiting for services that may not be forthcoming. For instance, Autism Skyward uses a low cost model precisely because it would be unrealistic to assume government and other developmental institutions would fund such a program fully. Adult autistic persons are not only empowered to be self-‐ actualizing and take full responsibility for participating in the program with an approach to excellence, it is their program to develop and maintain through their own efforts. Autism is becoming a cultural group not only as a means to express its unique contributions but also as a means to build community equity in sustainable structures that enable greater economic attainments for their members.
- 7. 7 As autism awareness grows persons passing as not having autism that do have autism may have more trouble doing so. Moreover, persons with autism are the lowest paid of all disabled persons and it is impractical for each individual with autism to overcome significant public stigma, structural violence, and systemic inequality on their own. Persons with autism may need to work together to have the societal changes they need to be accepted as workers that are competent enough for equal pay and opportunities. It is therefore a focus to have Autism Skyward be operated as much as possible by the students with autism that have, themselves, graduated through the program. The low cost design and social solidarity of autism-‐lead and autism-‐organized instructional support structures is designed specifically for the resources that students with autism can offer from themselves with a little help from their communities and benefactors who are friends of autism. Understanding that Autism Skyward is not a social program administered by non-‐autistic individuals with their own preconceived notion of what is best for the autism community in general goes far in realizing that Autism Skyward is an autism cultural event where autistic individuals realize greater solidarity in building bridges socially, opportunistically, operationally, and politically upwards. This protects the program from being continually threatened regardless of successes during times of recession or restructuring. Autism Skyward is an opportunity for persons with autism to work together with what is available to build more probable positive outcomes.
- 8. 8 Value Constitution An organization can only so far as its values allow. The central criterion for choice of staff or volunteers is to already be a good fit with the values of the organization. A value constitution provides a blueprint for the values expressed in the transition year program for students with ASD. It is important that power-‐dynamics are addressed explicitly and monitored throughout the performance of any duties connected with students with ASD. The theme any Autism Skyward value constitution must center on equality and a power-‐parity model between collaborators versus a top-‐ down leader-‐subordinate "helping the less fortunate" model. By using a university-‐based intervention model, distinguished persons from the university community are invited to participate on an ethics board to approve, reject, or alter all modules within the intervention program. They could also serve to make sure language is framed as ordinary language without unnecessary jargon or complex words. Special needs for persons with other disabilities or immigrant language barriers need to be discerned and provided for in the spirit of complete inclusion. The completed value constitution must be written out explicitly and transparently. Framework Licensing Challenges posed to societies by the rising prevalence of autism are global in reach and require national policies. It is, therefore, necessary to work with many universities, colleges, and higher learning institutions to adapt effective support
- 9. 9 structures that increase connectivity and communication. Therefore, multiple universities are invited to assimilate the Autism Skyward program. For this purpose, the model must remain simple so that it can be custom adapted to the particular needs of each institution and the particular needs of each new cohort. The model would be more effective if it clarify its core needs from federal and provincial governments and host institutions so that administers can make uniform changes rather than meet separate lists of demands for every institution. The model requires a student-‐guided approach based on the self-‐actualizing needs of students with autism rather than placate only basic needs like exam accommodations and basic assistive technology. The model must meet society halfway and work to reduce the stigma environment, valuing autistic contributions as valuable and equal, acknowledging autism atypical fixation interests as meaningful, changing the dialogue of how autism as a social construction is framed to reflect strengths, and building access to graduate studies and top-‐tier professional job placements. The model must be directed at autistic students that choose to take the program and as support for their pursuit of excellence in academics as responsible autonomous adults, rather than as an entitlement program providing unearned degrees or job placements.
- 10. 10 Academic: Overview Booklet for University Autism Service Offerings An 8-‐page booklet with companion webpage is needed to summarize each of the six intervention domains of the Autism Skyward program. This can be used as the primary overview of what a university has to offer its students with autism with reference to the six domain streams. The domain streams refer to academic career, job placement, social belonging, support acquisition, self-‐determined self-‐actualization, and building health. Details about the open house can also be included so the brochure serves both purposes of program overview and promotional material for the annual university autism services open house presented by a university’s autism centre. Each page can be entirely devoted to a domain, the open house, or an introduction to the autism centre. Academically-‐Related Neurological Assessments The Autism Skyward borrows many ideas established by the Yale Autism Child Study Center under Fred R. Volkmar (Yale Autism, 2013). The approach of this center is to advance the idea to maximize developmental gains and minimize the negative impacts of autism, be a university-‐affiliated and evidence-‐based intervention, and build upon each student’s own motivation, self-‐initiative, and positive self-‐concept. (Volkmar, 2007) Volkmar’s ideas pervade the Autism Skyward in other critical areas as well including providing a pro-‐active plan so that prospective students can understand exactly what services are offered, provide new forms of narrative to help persons
- 11. 11 contextualize their identities within an academic setting as students who are valued and supported. He advised that programs provide many opportunities to self-‐monitor and become more reflective of their actions and choices. Volkmar stresses that autism has strengths as well as weaknesses and that the strengths can be used as compensatory mechanisms to help minimize weaknesses. This technique is most effective when made explicit and clearly verbalized, as well as integrated within each learning experience. Moreover, this approach uses augmentative strategies that augment communication with semantic signs and technology (Volkmar, 2007). As a furthering step to this approach, Autism Skyward is designed as an augmented reality game system with tangential and compounding rewards and challenges built into its support systems. This strategy is intended to attract students with autism that are self-‐motivated to enter gaming environments to volunteer into the intervention system and enter its domain streams in what is familiar to many of them as a gaming structure. This virtual reality approach is already established as specifically attractive to persons with autism (Kandalaft, 2013) What is critical to the success of any game is that the capacities of the gamer are matched with the difficulty of the game. Volkmar also stressed this pretesting of starting abilities as well as the capacities to develop with an intervention are needed before an intervention is deployed (Volkmar, 2007). Data is, therefore, required to measure improvements in key quality of life domains including competency, social relatedness, and autonomy (Howlin & Volkmar et al, 2005). New pretest neurological assessments may need to be developed over time however key areas that can already be assessed
- 12. 12 include intellectual deficits which may have the largest impact on higher education success for students with ASD and depression in adults with ASD raises suicide rates among those adults exponentially (Health Day, 2013). Autism Leadership and Transition Semester Credit Course The Autism Skyward leadership and transition semester credit course for advanced learners is a concept built upon models of transition year programs in such universities as the University of Toronto. However, there are key innovations that are novel. A transition program needs to provide more than a student’s basic needs. A transition program needs to support the self-‐actualization and leadership of students with ASD. The Skyward transition course is designed as an elite leadership program that prepares autistic students to continue as advanced autism advocates in multiple areas of contribution. Therefore, in its essence, the transition program is a leadership program that supports students beyond being level with typically developing peers; rather it prepares them to be community leaders. To avoid initial stigma the transition course would be listed on transcript as “special topics” or “independent study” rather than as a transition program. Moreover, to limit barriers to universities, this course could be accessed as explorative studies that allow prospective students to do multiple initial units without first being fully accepted into the university. A person with a registered disability is able to maintain 40% (2 courses) course-‐load and be considered a fulltime student with financial aid. The transition semester would allow dedicated support to help a student succeed in a companion course of her or his choice during this critical period of transition that is
- 13. 13 highly vulnerable to attrition. As, although IQ levels are important predictors of successful adult outcome, just as much depends on the level of support offered by family and institutions (Howlin et al, 2004). Students with disabilities receive significant grants like a $2,000 per year direct cash disabilities grant and a $8,000 per year toward services such as tutoring, learning coaches, note-‐takers, and assistive technology. If this $8,000 per year grant for services and equipment for students with permanent disabilities could be used to accommodate living expenses and tuition for the first semester than conceivably universities could offer students with autism a loan-‐free semester to attempt university without fear of risking large debt after a failed attempt. Overview: This proposed single-‐semester leadership course functions to weave new students with autism into the full fabric of university support services while allowing students to transition effectively to the demands of the university. The program is a 13-‐week course consisting of 1.5-‐hour classes twice a week. Each week focuses on a different topic related to strengthening outcomes and preparing students for future leadership roles. The course is driven by small group work to empower each student as an active contributor in a learning community. Once a month a faculty chair supervisor will check in with the group for half an hour to record questions and answer a select few.
- 14. 14 The transition course program emphasizes the top predictors to positive post-‐ secondary outcomes which are: 1) inclusion in general education, 2) paid employment/work experience, 3) self-‐care/independent living skills, 4) student support, 5) transition program, 6) career awareness, 7) interagency collaboration, 8) occupational courses, 9) self-‐advocacy/self-‐determination, 10) social skills, 11) vocational education, 12) community experiences, 13) parental involvement, 14) program of study, 15) work study (Test et al, 2009). Strengthening these capacities is woven throughout the Autism Skyward program. Curriculum Summary: Week 1 Introductions – Model of Peer-‐Support-‐Distributed leadership and diversity in leadership – advocacy training and how to talk about disability in the context of inclusive education-‐ ICF Model of Functioning Week 2 Connections – learning what services and supports are offered by the university -‐ university orientation -‐ signing up to services including bursaries, writing centre, counseling, spokes bike, lockers, SSD tutoring, RCSD accommodations, RCSD AT, RCSD tutors and learning coaches, and other help such as medical services, dental, student card, clubs, societies, exercise facilities etc. Week 3
- 15. 15 Time management techniques – managing coursework -‐ digital organizing such as digital calendar, reminders, tasks, notes, email, etc -‐ use of AT -‐ budgeting -‐ social event and course event data entry. Note-‐taking on computers Week 4 Self-‐Determination Training – overcoming stigma and systematic inequalities -‐ non-‐violent communication – reframing the narrative – group counselling -‐ non-‐ judgmental discernment – creative process – self-‐advocacy Week 5 Authoring one's own life -‐ formulating essays -‐ concept mapping -‐ creating lists – editing and writing -‐ communicating needs and goals – making writing concise -‐ multimedia -‐ PowerPoint -‐ word processing Week 6 Emotional self-‐regulation -‐ autonomic and voluntary nervous system attributes -‐ neurochemistry and hormones -‐ survival circuits -‐ mindfulness training -‐ relaxation techniques -‐ de-‐escalating -‐ reaching out for help – WITS anti-‐bullying – recognizing maladaptive behaviors -‐ communicating atypical behaviors due to disability to persons without a disability Week 7
- 16. 16 Career counseling -‐ career searching tools -‐ temperament and interest testing – finding volunteer work – searching for job opportunities – workstudy – goal development – locating strengths and weaknesses Week 8 Leadership training – leadership strategies – group dynamics – building support – organizing successful events – leadership styles Week 9 Science of disability – prevalence and relevant statistics -‐ social context – biggest challenges -‐ co-‐occurring conditions and their symptoms and how to get help – managing disability symptoms, disability identity, and disability as a social construction – the neuroscience of disability Week 10 Science of autism continued – memory strategies -‐ the social brain – speaking scientifically about disability – science-‐based interventions – comprehending science articles Week 11 Social skills training -‐ theatrical presentation -‐ ad lib theatre sports -‐ non-‐ victimization boundary role playing – making group activities into something fun – understanding body language, eye contact, speech tone, gestures – and interpreting what is being said and learning how to respond
- 17. 17 Week 12 Class etiquette – what professors expect -‐ how to ask questions -‐ entering new situations -‐ getting help -‐ modeling behaviors -‐ calming techniques – approaching professors -‐ implementation intentions -‐ prompting Week 13 Student completion ceremonies -‐ presenting personal interest project -‐ summarizing experiences -‐ identifying what more needs to be learned -‐ organizing next semester strategy Graduate Planning Workshops There is scant research on graduate outcomes for persons with disabilities. It is hypothesized that this could be to the recent rapid rise in autistic population with each successive cohort rapidly increasing in prevalence in linear fashion from older to younger, in aggregate groups, and greater in higher functioning groups (Keyes et al, 2011). Many universities like the University of Victoria, our test institution, do not have a formal policy on graduate students with autism, or pervasive developmental disabilities in general, because there are so few self-‐declared persons with autism entering graduate studies. Universities have not yet experienced the full demands of the emerging autism populations.
- 18. 18 There are specialty programs that offer some funding and unique training opportunities in Canada to study autism related research. This would be applicable only to students with autism that wish to work in the autism field. (ART Program, 2013) Post-‐Academic Follow-‐up Services The gains achieved through a successful academic career in a university should be maintained and fostered through continued connection to the university as an extended academic community, through opportunities to connect with the institution as a lifelong learner, through professional development opportunities, through alumni services, and through options to track lifespan data of students with autism to better understand outcomes related to modular interventions present during their time of university participation. It has been established that persons with autism have a high prevalence of disconnects from critical forms of social connection including friends, family ties, work peers, educational opportunities, and basic community connections. One of the fundamental goals of Autism Skyward is to promote, establish, and maintain academic learning communities that fully include and integrate students and lifelong learners with autism into the general university community. Once these connections are achieved it could be problematic to cut academic community ties once a student with autism has graduated from the institution. It is, therefore, important to foster an academic community that is welcome to alumni support while maintaining the balance of allowing current students to mold each year’s community identity as a reflection of their own needs without undue pressure to maintain static learning community cultures.
- 19. 19 Whereas peer-‐support groups under models such as the Authors with Autism model are geared toward sustaining students through their migration through academic programs in a manner that connects them to peers with similar challenges, the model, through distributed leadership promotes the creation of satellite community field trips and community events that outreach to public lifelong learners and alumni members. A method of promoting this activity is to include in the peer-‐support structure, 1) the rationale for providing such outreach endeavors, 2) an archive record of past attempts, 3) organization of planning sessions for new events, 4) and list of possible ways to accomplish this purpose of providing continued inclusive community outreach. Implicit in the Autism Skyward program is the idea that a commitment to education is a lifelong commitment and the promotion of lifelong learning is a core value. Autism Europe commissioned a study that looked into the effects of aging on the autism community and reflected on the importance of lifelong learning as a necessity due to the nature of how most autistic persons learn slowly over time and, therefore, require a learning environment that allows them to continually progress in adapting to learning goals and retaining what they have learned. In fact the study claimed that access to supports for lifelong learning is a “right” for persons with autism. (Autism Europe, 2003) Some Autism Centres like North Street Autism Centre have embraced the idea that they are lifelong learning environments that offer autistic and non-‐autistic persons opportunities to connect with continuous learning opportunities (NSA, 2013).
- 20. 20 These lifelong learning opportunities may develop into sophisticated professional development programs that may mutually benefit the institutions and alumni. A further opportunity for institutional follow-‐up with alumni with autism arises from the idea embedded in the Autism Skyward program that the university is a laboratory, that autistic students become partners in autism research, and the university is an interventionists to the entire autistic student body served. Lifespan data collection could be used to measure detailed outcomes. The modular approach to Autism Skyward could allow researchers to fine-‐tune each module and share in designing and analyzing lifespan data from alumni as to the long-‐term efficacy of these empirically based modular interventions on long term outcomes of students with autism. Such lifespan research is not only limited to psychological research. Engineering, computer science, education, social work, admin policy, medical and other faculty based interventions could build important support structures into society to accommodate a significantly different kind of population into a world that has not had to accommodate such peculiar needs in the past. These forms of research act to further connect alumni with autism to the general university communities.
- 21. 21 Career: Career Counseling & Planning Research supports the idea that persons with autism require academic and training programs that directly translate into skills used in their job placements because their learned skills may not generalize as well to less directly related jobs (Howlin, Alcock, & Burkin, 2005). Career placement work is, therefore, best started at early entry into university and career development is at the heart of the Autism Skyward program. Career centers at university already provide career assessment tests for nominal fees that may be covered by disability grant funds such as Myers-‐Briggs Type Indicator® and/or Strong Interest Inventory.® The University of Victoria has a model career planning seminar series that could be effective for early planning called the Major Decision Workshop. This workshop takes clients through compatibility testing to look at the facts of jobs including demand, future predictions, salary, qualifications, and other data. Such a career workshop would be suggested as highly recommended to students with autism entering university. Autism Centre Volunteering Opportunities Learning career enhancing skills requires being constantly immersed in an environment where those skills are readily acquired rather than a few short workshops. The Autism Skyward program moves from career counseling to building foundational skills through volunteering, specially designed work-‐study positions, university co-‐op opportunities, and finally job placement programs. The Autism Skyward program
- 22. 22 requires there to be a university autism centre. Such a centre provides a hub for autism research, autism interventions, autism assistive technology innovation, and autism education. Moreover, an autism centre provides the perfect hub for autistic student volunteers to begin building important work and social skills that will continue to develop into their later work-‐lives. Work-‐Ready Program One of the guiding principles of Autism Skyward is to avoid many of the divisive dichotomies in the autism community such as high versus low functioning, childhood versus adulthood autism, and autistic versus neurotypical models. Replacing these divisive dichotomies are such approaches as a model of needs where each person is assessed as having inventories of different autism spectrum features corresponding to different needs. LFA adults who are self-‐motivated to contribute in a job or volunteer opportunity deserve the same access to a university as HFA adults. Working with a university’s continuing studies program, a program to provide LFA individuals with experiences at a university that allow fidelity tests to be made to access how much LFA individuals could be certified as work-‐ready. This allows prospective employers and volunteer job providers to know if that job will have a positive impact on individuals without as much guesswork.
- 23. 23 Work-‐Studies Designed for Persons with Autism Work-‐study programs could be designed for strengths exhibited in the autism spectrum and with an understanding of the deficits. A certain amount of work-‐study positions for persons with autism could be allocated every semester to ensure that this group, the lowest paying and under employed of all persons with disabilities, are adequately given skill building opportunities. Successful work-‐study terms are important steps on the path toward successful post-‐university job placement. Autism Specialized University Co-‐op A specialized university co-‐op program for person with autism would initiate an important dialogue between prospective employers and higher-‐learning institutions on how best to provide successful transitions into the workplace for person with autism. A specialized autism co-‐op would provide an incentive for students with autism to self-‐ declare their condition in a stigma environment. Moreover, such an environment allows the university to educate students in the context of a job placement. It also allows employers a say on what skills are taught. It offers all stakeholders a safe trial period to make optimum fits. And possibly, most importantly, allows employers to gain a greater comfort with workers with ASD without long-‐term commitment. Job Placement Program & Employer Education Program Autism Skyward is a “university orientation to job placement” full-‐span support strategy to assist persons with ASD through their academic career. Its goal is to make universities destination campuses for persons with autism by preparing individuals with
- 24. 24 autism at onset for positive outcomes after leaving university. Forty-‐Five percent of young adults with ASD in Canada from a significant sample were found to have never had employment (Eaves and Ho 2008). Successful use of an academic program to gain sustainable employment may be one of the single greatest opportunities to change the course of a person with autism’s life for the better. Employment has significant positive effects on most core quality of life indicators (Henninger & Taylor, 2013). The goal is to embed work-‐life development into the core of any academic program in which a student with autism registers. The challenge is discouraging, complex, with tens of thousands of lives at stake, and billions of dollars at risk. Yet for reasons outlined in this proposal manual, significant support funding to alter outcomes is unlikely to be invested any time soon. What is left is to make a grassroots strategy that requires minimal funding, that students with autism can build as their own, that is open to as much community support as friends of autism are willing to give, and is intelligent enough to overcome barriers that have so far been unyielding. Autism Skyward is an attempt at conceptualizing a possible starting strategy that is robust enough to be innovated further by autistic stakeholders, researchers and interventionists, module by module, in order to realize a goal of equal greater inclusion for autistic person realized by the dignity bestowed by valued contributing roles. This model is a “learning as you do” model because the depth of the problem is too fast to remain in theoretical deliberations and for this reason many of Autism Skyward’s intervention modules have already been enacted in conjunction with this written proposal. What remains is for others to make each component better and more effective through science and effort.
- 25. 25 Social: University Open House for Potential Applicants Parents of children of autism are often greatly concerned about the future of their children after they reach 19 years of age and government services are greatly reduced. After High School persons with autism supported by services declined from 79% to less than 9% (Lawer, 2009). Many university accommodations require the student or parent to apply earlier than the start of the first semester if important services are to be available immediately during this critical time of need. An open house at the university for prospective students and their parents provides an effective opportunity to introduce university services and specialized autism supports. A yearly open house would provide a university’s autism centre to promote its achievements and offerings as well as contribute to the community by providing this valuable service. Different speakers from diverse service providers within the university could be approached to volunteer in delivering short talks on each subject area. This could include financial aid as it relates to person with a disability including extra grant, bursary, and scholarship funding available. A brochure for each annual open house could be produced using a template that requires only minimal yearly date updates. Parents are effective at searching for services and will often contact different on-‐campus groups in search for services applicable to their children. Such a brochure would offer a means to quickly provide an effective reply to these enquiries.
- 26. 26 Another function of the open house is to provide a vehicle for students with autism to go full circle and share what they have learned and experienced as university students with newly arriving cohorts. This provides important opportunities for students with autism to engage publicly on the subject of how to support autism in Canadian society. Autism centres like the Center for Autism and Related Disorders in Los Angeles and South Florida utilizes annual open houses to showcase their full list of assessment and intervention offerings. Such an open house could not only provide prospective students valuable information concerning university entrance, it could also provide families important information for pre-‐university preparation including sharing service providers that offer autism, intellectual impairment, and other important assessments that could provide educators at any age important information concerning how their curriculums are designed. Open houses could also provide an effective way to acquire research participants with autism of all ages and connect them to autism researchers in the university. Using this model of designing an open house event with multiple simultaneous purposes organizers can better attract larger groups of attendees. The open house model developed as part of Autism Skyward is called Autism on Campus. This autumn semester workshop showcases University of Victoria services and initiatives that specifically support students with autism, allowing these students and their families to make more informed decision concerning their academic futures at the university. A short orientation workshop is also necessary to promote any transition credit course program by offering prospective students a taste of what a transition program would be like.
- 27. 27 Student Peer-‐Support Group Student peer-‐support groups are a mainstay of many university autism transition programs. York University and University of British Columbia’s (that uses the York model) mentorship programs include peer-‐support groups where like-‐diagnosed individuals are able to socially connect with each other regarding challenges specific to autistic persons (Bebko, Shroeder, & Ames, 2011). This model focuses on social relationship building. The model incorporated into Autism Skyward is Authors with Autism as a learning community. Whereas social communities are focused on relationship building and work groups are focused on task building, learning communities attempt to draw a distinct balance between the two. Moreover, learning communities have specific features such as greater student engagement with class material and peers, higher academic performance, a greater love of learning, most positive view of academic institution, and individual empowerment (Zhao & Kuh, 2004). Students are often best equipped to help other students because they share a similar context, similar goals, and are strengthened by the sharing of information. Graduate students with autism are valuable resources as presenters to student community groups. They are able to provide helpful tips on how to progress academically and adapt to university life. Autism may have a special connection with writing. An autistic’s writer’s persona may be different from her or his egoic persona (Murray, 2006). Persons with autism may have different phenotypes in their ability to output language through speech motor functions (Tager-‐Flusberg, Paul, & Lord, 2005). Writing may be a wonderful leveler
- 28. 28 within the autism community to help establish strong communication ties. Writing also helps foster greater communication, contextualization, literacy, and self-‐ understanding. Writing allows persons to participate in social groups without the anxiety of speaking directly with others. Writing is empowering because it allows one to script their own lives and list their own wants and dreams. This is the philosophy behind the peer-‐support model for Authors with Autism. Authors with Autism uses a distributed leadership model where all members are considered leaders, a controversy over conflict model that allows for contradictory open debate with rituals of complete respect for the “other,” and fosters civic identity and belonging through autism community membership. These respect rituals are called gentle reminders. If there is an edge of competitiveness, we say, "Supporting other." If someone talks too intensely, we say, "Gentle voice." If there is conflict between persons, we say, "Kindness please.” When there is a stress response we address it as a reactive sympathetic autonomic nervous system response coupled with valid emotional impact that can be discussed openly. Autism community involvement provides a core source of social belonging within a university institution and is a vehicle for the learning of social skills and ways to navigate being part of the university’s overall academic community. Mentorship Program for Students with Autism
- 29. 29 Two models of peer support are most well known to Canadian universities. The first is York University under the guidance of Professor James Bebko with the assistance of a $224,000 four-‐year grant. The second is from Calgary’s Ability Hub. These models connect students with autism with psychology graduate students and provide 1.5-‐hour meetings to discuss specific themes like how to complete a paper. This mentorship role then gets expanded into other beneficial roles related to social belonging and academic excellence. Expanding on this model, Autism Skyward proposes expanded mentors outside the graduate student pool to include top GPA undergraduate students in the same classes that meet fidelity standards for empathy, safety, and objectivity. This provides professional training opportunities for mentors to better work with students with ASD. Mentors could also choose which student they mentored from the student’s self-‐ assessment reports with demographic data removed. Mentors would be asked to complete a free criminal check for volunteers, answer a fidelity questionnaire, and undergo two mentor-‐training days that focuses on non-‐violent communication, understanding autism, and learning their mentorship roles. Social Skills Workshop The motivational reward for social skills development is often the positive reinforcement inherent in successful social engagement. However, in students with ASD this reward assumption should not be a default assumption. Often what may seem like a positive social experience may cause anxiety, perseverations, confusion, and other aversions (Ward et al, 2011). Therefore other extrinsic reward systems are required to
- 30. 30 be built into a social skills development program. The approach woven throughout the Autism Skyward modular transition program approach is a games model. The university as a singular interventionist provides an augmented reality gaming environment. Rewards are built into the system as acknowledgements of successful achievements. Successful social engagements around a student’s atypical fixations are core rewards and, therefore, the entire intervention should be considered as an encompassing social skills workshop. This may be established by associating and combining social experiences with intellectual pursuits, multimedia, and fixated objects in order to create what others have called a “third space” of proximal development (Rizzo, Schutt, & Linegar, 2012). Autism Political Engagement Considering autism disability is often most challenging as a social construction within a stigma environment, the success of autistic students is heavily weighted on how far they can become politically engaged in democratic processes. Areas of political involvement include student clubs like Authors with Autism, honours societies like Psi Chi, student unions, and student societies like the Society for Students with a Disability that offer elected offices. Many of these enterprises also use Robert’s rules and offer skills development in running student led organizations. By locating what opportunities students with autism have and organizing how they can sign up and participate, students with autism can be welcomed into experiencing political engagement. Working with democratic student associations also helps empower students foster political voices with says in their futures
- 31. 31 Another area of political involvement is opportunities to outreach to faculty and, thereby, join in important discussions such as new hiring, changes to faculty policy, and event planning opportunities. Through learning positive communication strategies with faculty students with autism can gain faculty role models regarding best communication practices.
- 32. 32 Supports: Parent Autism Advocacy Group With over 80% of adults with autism living with parents it is imperative to harness the strength and resolve of parental involvement. Although the current trend is that few students with autism will become completely independent, better partnership between students and their parents could yield better forms of semi-‐independence (Howlin et al, 2004). One of the ways in which students and their parents could acquire gains is by working towards a schedule of structured activities for the student with autism. Structured activities are significantly correlated with improvements in mental health and less hospital visits (Weiss, 2013). Furthermore, parents can work together in advocacy groups to share resources and ideas and work together toward solutions. A low cost way to utilize parental resources within a transition program is to organize a parent autism advocacy group. The costs involved would be negligible. A facilitator of autism services could book a university classroom once a month for meetings for free. The parents could develop a fundraiser to purchase a coffee cart, coffee urn, hot water urn, and coffee and tea, and have light snacks if wanted. A format could be drafted for the advocacy group that included making agendas, meeting rules, socialization time, presentations, field trips, and joint activities with students. This parent base could serve to generate fundraisers for autism annual cultural events and orientation open houses, as well as extracurricular opportunities and field trips for students with autism. They could also provide these events with a volunteer
- 33. 33 base and advocated directly with the university for needed changes to the transition program and autism support services. By adding the organization of structured activities that lend to autistic students becoming more competent, autonomous, and socially connected, parents can strive to be full partners in lifelong developmental changes that could affect lifelong health and other outcomes. Integrated University Supports Students with autism may often have difficulty traveling alone or to new locations. Therefore, it is not only important to gather information and sign-‐up forms into one location so students can be served by all available and applicable supports immediately, but they may require someone to physically walk them to sign up for and attend their initial appointments with service providers. Therefore, the facilitator of autism services must be trained to function as an orientation guide to physically go with students to all critical service providers on campus and sign them up if possible. This is a key requirement for the program and serves as a friendly user interface to bring complex supports to students with a minimum of student effort. Campus Tours at most universities are able to provide custom university tours of key facilities at the university so students have an experience of going to them first hand rather than an abstract knowledge of them. Tours can be modified to include places where quiet study is possible, private bathrooms, places to get specialized food relating to allergies, and safe nature walks.
- 34. 34 The integrated university services sign-‐up system would sign students up with the disability resource center, medical and psychological services, counseling services, writing center, career planning services, food cards, recreation centre, bursary applications, food banks, student cards, work-‐study applications, child-‐care subsidies, student and honour societies, student societies, event listings, library resources, computer labs, and volunteering opportunities. A meeting between university service providers for students with a disability is required to promote partnership and service integration. An annual catered meeting such as an Enablement Summit can help better connect university services. Learning Coach Autism Training Program It is necessary to equip learning coaches that serve students with disabilities with specialized training in dealing with students with autism. One area of focus is to teach learning coaches how to provide on-‐task prompt monitoring services to help students with autism succeed at meeting their deadlines and responsibilities. Learning coaches do not need to understand detailed scientific knowledge on autism or behavioral techniques developed for children. Rather, learning coaches require practical techniques based on an empirical knowledge of autism that assists them in helping autistic students succeed regardless of the specific challenges autism poses. The following is a list of practical tips that could serve as the basis of a 1.5-‐hour training seminar for learning coaches: 22 Practical Suggestions for Helpers of Persons with Autism
- 35. 35 1. Recognize clients as equal persons deserving of equal opportunity. 2. Recognize that social stigma is often the number one roadblock to a client's success. 3. Clients may require all expectations to be spelled out verbally, and with a written copy. These expectations may need to be repeated over many client encounters. 4. Use "Errorless Learning" as a type of prompting. "What is the next step?" Whatever the response, try answering with a "yes" and immediately prompt with the correct answer. Try to use the theatre-‐sports technique of never saying "no" and blocking flow, but rather improvise with affirmatives followed by creative methods of moving forward. 5. Offer clients a concise and well-‐organized list of contacts, with descriptions about what each contact can do, so clients may access different service options when needed. 6. Clients may have difficulty reading others' emotions and speaking about their own emotions. Recognize that your client may have emotional vulnerabilities and limited capacities to communicate emotional needs. Ask clients how they feel about steps as they are taken. "Yes, we need a list of all your assignments, including the dates when they are due; how do you feel about us making such a list right now?" 7. Clients may need to be taught how to read non-‐verbal behaviors and how to ask others to translate their non-‐verbal behaviors into words. It may be beneficial to the client if the helper translates her or his non-‐verbal behaviors into words during the consultation process rather than assume they understood. "When I lean away from you that means too much information; when I lean closer to you that means I want to hear more. If you wish to know what my nonverbal behavior is communicating, please ask." Consider using an open posture without arm and hand blocking. Closed postures or grimacing facial expressions may confuse a person with ASD. 8. Helpers may need to organize and provide time management plans for clients, rather than simply telling them they need one or training them how to make one. "Lets find a way to organize your time; we can go step by step, and make a plan together." 9. Clients may need to be offered course tutors upfront, rather than being left to request them and may also need all corresponding forms to be filled out for them. Likewise, a client may need to find a tutor or her or his own if needed. Clients may need ongoing executive assistance to help keep them on track with their academic goals. 10. Clients may adapt well to their training yet struggle to transfer those skills to other applications. Therefore, matching career goals and academic programs should be emphasized earlier in the consultation process. It could be asked, "What are you wishing to do with your acquired skills? Could a career counselor help you calculate your long-‐term opportunities?" If yes, set up an appointment with one at the university.
- 36. 36 11. Clients are as much as six times more likely to be bullied than members of the typical population and, therefore, may require added protections for current problems and/or counseling for past trauma. One could ask, "May I walk you down to medical services and ask about scheduling you for an appointment with a psychological counselor?" 12. It may be helpful to enquire about the client's possible special interests and allow a significant amount of time for the client to speak about them. It may be useful to add descriptions of the client's special interests into the client's file. 13. Expect that clients may do something called "monologuing" by speaking for a considerable time to convey even a single concept. They may not allow much dialogue reciprocity during this time. A helper may better understand the client's point by using questions, paraphrasing, and comprehension checking to confirm with the client that the client has actually been understood before responding with the assumption that the client has been fully understood. The client's simple idea may prove to be more intricate or detailed than what appears at first glance. Other times one may say, "What you are saying is very important, but I am conscious of our time and want to make sure you get the benefit of completing the task we have set out to do in this session." 14. The client may be one of the most sensitive persons a helper has encountered and may read every gesture and word in order to intuitively map the character of a person. Persons with autism may often "see" directly through facades and view others' hidden attitudes and judgments. A high sensitivity to being respectful to the client is very important. Disregarding or dismissing the client as not being capable of understanding when she or he is being devalued is an underestimation of her or his intelligence. They may discontinue being a client without an apparent reason due to this phenomenon. 15. Clients may have unique abilities like capacities for novel thought and/or intricate knowledge of a subject that may be a highly beneficial for enabling them to achieve their goals. Write a two-‐column list of capabilities and difficulties to help the client understand her or his strengths and weaknesses. 16. Clients may not be able to easily form adequate and/or healthful relationships without assistance and, therefore, may require others to organize social mixers in order for them to meet people with similar interests and goals. Social mixers should be moderated. Events organized for clients should be geared toward building positive memories. The Centre for Autism Research, Technology, and Education (CARTE) has a UVic peer-‐support writing group for students and lifelong learners with autism called "Authors with Autism" that meets every month, and there is also an annual "Autism's Own" conference and social gathering that celebrates contributors to UVic's peer-‐reviewed journal for persons with autism called "Autism's Own." 17. Interpersonal empathic counseling skills are highly useful for both client and helper. I recommend the "The Skilled Helper" or "Essentials of Skilled Helping" by Gerard Egan as a resource for better understanding these important skills.
- 37. 37 18. A client's special interest should not be dismissed as a hobby, a symptom of dysfunction, or something superfluous. A client's special interest should be understood as expressing the client's real values, personality, and sense of purpose. 19. Emphasis should be placed on clients being neuro-‐diverse, having diff-‐ability, or having unique capacities and hindrances, rather than being labeled or construed as disordered, defective, mentally ill, broken, abnormal, or any other "inferiority" judgment that may place a client on an unequal footing. 20. Clients should be understood as having different sensory experiences and perceptual world-‐views than persons without autism and, therefore, helpers should not expect clients to react typically to stimuli. Nor should clients assume they understand persons with autism before they listen to what they are indeed describing as their experiences. 21. Have an emergency response plan prepared ahead of time in case of a client suddenly experiences extreme affective distress. Consider that approximately a third of persons with autism have ictal events (epilepsy) and some seizures look like a sudden "meltdown." Many persons with autism have stereotypy as a feature of their autism. Stereotypy is also called "self-‐stimulation" or "stimming." Stimming can appear as hand flapping, rocking, shaking, fidgeting, arm waving, jumping, walking on tiptoe, finger moving, doodling, head nodding or rolling, or as if someone is not coping. For persons who express stereotypy, this behavior is routine and should not be a concern to the helper. Persons with autism can also have a propensity to have "autism meltdowns" and this is expressed as getting suddenly upset. This third behavioral difference requires a safety plan beforehand to address what needs to be done in such an event. 22. Attempt to tailor client plans in terms of routines that can be consistently maintained. Persons with autism may often require more structured routines, but often they need adaptable routines because they may have "free-‐wheeling" circadian rhythms, meaning their daily rhythms do not follow the 24-‐hour clock or daylight as they do with most typically developing persons. They may have sleep and fatigue issues. Digital Time-‐Management Workshop A free workshop for students with autism is required to help them set up scheduling and reminder software on their computers, tablets, smart phones, or other devices. Smartphones help provide prompts in order to move from task to task and may be a critical intervention tool (Mechling & Savidge, 2011). This workshop would include actual hands-‐on setup of features like Google Calendar for schedules, task list and