OUR VISION
Why Focus on Adults and REAL Lifespan Issues?
1 in 7 people have a link to someone with an Autism Spectrum Disorder (ASD) through family, friends, social activities, or work. In 2013, the CDC reported that 1 in 68 children, in America, were being diagnosed with ASD. That's approximately 2% of all children. Autism is a lifelong disorder, and many adults who matriculated out of public schools prior to the late 1990's, when awareness of the disorder sharply increased, may likely fall somewhere on the autism spectrum, and have never been diagnosed. This means, there is quite possibly, more than 8 million adults (21+) living in America, who have ASD. An estimated 66% of which are unemployed.
This means many (un)diagnosed adults are trying to do the best they can to live and lead independent lives; even marry and raise a family. It seems all the focus of society, around autism, is to provide early diagnosis and intervention for the small children in our communities. Once diagnosed children grow up and are no longer the responsibility of the public school system, and/or utilizing the varied programs & resource supports offered, they are all but forgotten and become “someone else's problem”. Those lucky enough to have services provided growing up, are often still ill-prepared for what awaits them as adults. Many educational transition programs, if they even exist, often fall very short of the task, tossing these young adults to the societal wolves where they usually end up living with their parents or leading very unfulfilled and unsatisfying lives.
Most of society, not directly connected to autism, doesn't comprehend that autism is a lifelong disorder with very different issues & problems not addressed within childhood autism programs. What services and treatments are provided to the children rarely provide them adequate skills and training to swim among the sharks.
Most transitional programs within the public schools, if available, don't start early enough, nor are comprehensive enough to prepare these youth for what lies ahead. It's great that there are organizations, often established by parents of individuals with ASD, that have evolved to assist these matriculating public school students prepare for post-secondary education and adulthood; however, most lack one special component, the lifespan experiential knowledge of adults who live 24/7 with the wide variety of issues encountered by those on the spectrum. Parents are compassionate about what happens to their children when they grow up, but do they “truly” understand the internal feelings and perceptions experienced by their children?
Individuals with ASD are in tune with the details of the difficulties of their daily lives; however, because of the nature of autism and a person's inability to precisely communicate or convey those feelings and frustrations to the non-autistic, neurotypical population, needs and support solutions often fall very short of producing a maximum positive outcome.
Higher functioning individuals on the spectrum are quite intelligent, some even very gifted; especially in matters or subjects they become intrigued or extremely interested in. Many past brilliant minds are thought to have been on the spectrum, including Albert Einstein and Mahatma Gandhi.
Individuals with autism make excellent employees, only if employers would possess the willingness to understand the nuances of the disorder, and how best to create an environment that is conducive to great corporate or business success, if the talents of this population are accessed. People on the spectrum are highly loyal to those whom they trust and/or have joint interests.
Oftentimes, because of employer misunderstandings or acceptance, many individuals on the spectrum choose to either step out on their own to seek employment in which they are the boss or permits total control of the operations. If these adults don't go the self-employed route, they might end up borderline employable, unemployed or working unsatisfying, menial, minimum wage jobs.
Trust is a big component in the life of a person with ASD. Following rules is also a huge characteristic of someone on the spectrum. If given the instructions or rules, these individuals often will go to extremes to follow those expectations. One thing that will cause great mistrust, chaos and confusion to a person on the spectrum, is when taught the rules or procedures on how to work or live, then seeing others (neuro-typicals) breaking or making exceptions to those directives.
Finding appropriate and affordable housing is another great obstacle for adults with ASD, as they try to live independent lives. Again, trust comes into play. Individuals with ASD are wanting to trust the people they encounter in daily living, especially those in positions of authority. This includes real estate agents, leasing agents, banks and mortgage companies. When trust is broken by acts or deeds of misrepresentation by these professionals, it becomes an observation and experience that gets locked away in the brain's files. These individuals with ASD get suspicious and confused on just who CAN be trusted.
If affordable housing is located and compatible with needs and services, geographically, the housing unit may actually be ALL WRONG. Each person on the spectrum usually has their own unique set of sensory issues. Living in group housing, an apartment or joined residence creates considerable challenges. Sounds are probably the greatest challenge in a person's home environment; especially when unpredictable. By adulthood, with the proper sensory training, most adults with ASD are able to filter out many sounds encountered, which disturbed them as a child. The big problem comes when multiple sensory issues are bombarding these adults simultaneously, and the adult has no control over this external input. These situations can provoke a meltdown, of sorts, or person to act out of control, character, or unpredictably.
Once a lease is signed or property purchased, and person moves in, it becomes a little late to find out how disruptive the space environment may become; especially with tenants always changing. This is why many adults on the spectrum decide to continue to live at home in an environment that presents familiar experiences and exposures. If not, those adults living on their own, may come across as very transient/unsettled. Even, quite possibly, homeless. It's critical that housing communities become sensitized to these issues, which may be presented when renting to adults on the spectrum.
Transportation and responsive, integrated medical care round out other lifespan issues for many adults with ASD trying to live independently and as contributors to society. Physicians familiar with the needs of individuals with ASD usually are pediatric or family physicians. When children grow into adults, especially if they have major medical issues, it becomes very difficult to locate a physician, especially specialists, who UNDERSTAND and have the PATIENCE to work with these adults. Adults on the spectrum are usually on their own to try to adequately communicate what's wrong. When needs don't get met, questional behavior may result from the distress and frustration being experienced by the adult.
What Makes Autism in Community Different?
It's a total lifespan solution nonprofit, social enterprise, for adults with ASD, designed by adults with ASD. Most programs for adults on the spectrum specialize in just one specific area: post-secondary education support and programs; supportive housing; supportive services; or employment. Few comprehensive, multi-disciplinary programs have key leadership who, themselves, live with ASD. These programs, often well-intended, attempt to encourage or dictate the behavior or outcome “expected” of persons on the spectrum, to make them “acceptable” members of society. This can sometimes become a type of social imprisonment, which often restricts or deprives these very unique members of society from finding or reaching their full potential.
Autism in Community was founded by an older, independent adult with autism, who has had extensive, and variable experiences her entire life regarding housing, employment, and medical & professional services.
Our objective is to address any and all lifespan concerns faced by adults on the spectrum, with help and input from these adults. Our goal is not to TELL adults how to live their lives, but offer solutions, suggestions, and resources to help the adults find and live meaningful lives; not the lives “others” want or expect them to live. We want to assist in skill development, which helps to adapt and co-exist within their chosen community; not to be a pre-programmed robotic human.
We also plan to develop a program inclusive of the entire community. The neurotypical (non-autistic) community will be invited to participate in decisions for this program, as well as collaborate with the program leaders to develop true inclusionary live/work/support programs or projects to educate the total community on how to be responsive and inclusive to the needs of these adults; how to be more sensitive to assets & shortcomings.
What Are Our Plans?
Autism in Community was officially launched on June 1, 2015, when its founder, Michele Newman, introduced the concept and program ideas to the Longmont, CO, business community during Longmont Start-up Week (June 1-5, 2015). Longmont is an open and accepting community, and has the potential to become the most Autism-friendly community within the U.S. Longmont is currently developing a creative, business and community vision.
Our pilot program will be modeled around accomplishments and successes localized in Longmont and Boulder County, Colorado. However, this program will not remain exclusive to this geographic region. It is hoped that other communities or organizations will want to replicate our model program successes within their own community. This would allow the estimated 8 million+ U.S. adults, on the spectrum (diagnosed or not), to have equal opportunity for positive experiences in developing confidence and courage, to help them find greater fulfillment in life.
We currently have our IRS Employer Identification Number (EIN), and are registered with the Colorado Secretary of State as a Colorado non-profit corporation.
STAGE 1:
Recruit a volunteer Board of Directors who are passionate about autism and the need to truly address the concerns these adults face, which have been sorely neglected or provided on a minimal and spotty basis. Only officers will need to be geographically located in the Boulder or Larimer County/north metro Denver area. The only requisite of the board members, is that they are passionate about autism and the concerns individuals on the spectrum face throughout their lives. Board members must be willing to contribute 10-15 hours per month to develop this start-up, including teleconferencing for meetings, if necessary. Crowdfunding will be utilized to raise funds necessary to file for IRS 501(c)3 non-profit status, and other initial start-up expenses.
Bylaws and a comprehensive business plan will be developed and written to have a clear definition of our initial vision, objectives, and goals to make available to individuals, groups and organizations who may be interested in partnering or collaborating with our efforts.
STAGE 2:
While the monies are being raised, a collaborating relationship will be pursued to work with the St. Vrain Valley and Boulder County School Districts to observe and/or recommend improvements to their special needs & transitional program(s) for students w/Autism; elementary through high school. Local family and adult support/discussion groups will be formed in the Longmont area. Additional discussion groups will be encouraged throughout Colorado with our facilitative support. Meetings will also be scheduled with local businesses, employers and city/county government to begin planning and developing a supportive network.
Inclusionary training to make inroads to a variety of employment options, other than just computer science work options. (Not all adults on the spectrum are computer geeks!) Community-wide forums will be held to create awareness and inform the general community of the organization's plans.
STAGE 3:
Develop special partnerships with city and county housing authorities; CU, CSU and Front Range Community College; state Dept. of Vocational Rehab; local business enterprises; solicit corporate and foundation sponsors; & partner with other like-minded organizations who support adults with ASD. Make initial plans and solicit sponsors for the 2016 Adult ASD Strategy and Inclusion Conference to be held in Longmont. Recruit Adults with ASD interested in participating in the program.
Begin reaching out to various groups/organizations within the community to schedule formal training and/or discussions that will inform those with limited or no understanding of autism and its affects on individuals and their families, to dispel any fears and concerns about the disorder. Also, to build respect and appreciation for the unique qualities persons on the spectrum offer to their communities, which will open the doors to greater inclusion for this community of people.
STAGE 4:
Conduct the 1st annual Adult ASD Strategy and Inclusion Conference to be held April 8-9, 2016, in Longmont, CO. This conference will invite community & state leadership, autism professionals, medical professionals & behaviorists, educators, researchers, employers, and adults with ASD to do strategic planning on how to best create & promote community inclusion for adults (and families) living with ASD.
It will be two days of intense brainstorming and discussions between adults on the spectrum, their families, and community members & leaders with limited or no link to autism. The plan is to develop strategies to incorporate within communities, across the country, to make inroads towards greater acceptance and inclusion of individuals, especially adults, who have ASD.
STAGE 5:
Launch a major crowdfunding campaign to raise funds necessary for leasing commercial space to set up & open the first Autism Social and Employment Incubator. Funds will also be used to purchase a used 12-15 passenger bus to help transport program participants to jobs and/or activities.
Define the healthy foods arm of the organization, AIC Kitchens, which will produce healthy snack food to sell online and in stores as a means of fundraising and job creation for those interested in food service and/or nutrition-based employment (tasks/experience).
Locate, lease and furnish a commercial/industrial property to set up the Social and Employment Incubator. Acquire the used passenger bus. Find volunteers to help prepare and initiate the incubator program. The social and employment incubator will coach adults in business social & relationship skills; interview and employment performance and expectations; create employment pre-interview videos for potential employers to access; perform skills testing/evaluation of the employment candidates; work with local authorities to find suitable housing for those program participants wanting to relocate to Boulder County.
LONG TERM GOAL: Purchase a large working hotel/event center where all employees are adults with ASD working & living within the hotel (room & board), and sharing in hotel profits.
You can download a PDF of this info HERE.
