Information Series Archives | Autism Society https://autismsociety.org Creating connections for the Autism community to live fully. Wed, 03 May 2023 16:22:09 +0000 en-US hourly 1 https://wordpress.org/?v=6.1.1 https://autismsociety.org/wp-content/uploads/2021/09/asa_favicon-66x66.png Information Series Archives | Autism Society https://autismsociety.org 32 32 May Resources: Mental Health Supports, Suicide Prevention, Summer Activities https://autismsociety.org/may-resources-mental-health-supports-suicide-prevention-summer-activities/ Fri, 28 Apr 2023 18:52:56 +0000 https://autismsociety.org/?p=19358 This May, our focus will be on Mental Health Awareness Month, suicide prevention, Water Safety Month, and resources for summer planning. Our public policy resources provide guidance for the end of the Public Health Emergency ending on May 11th. We also encourage you to continue using our Action Center to support the disability community.   Mental Health [...]

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This May, our focus will be on Mental Health Awareness Month, suicide prevention, Water Safety Month, and resources for summer planning. Our public policy resources provide guidance for the end of the Public Health Emergency ending on May 11th. We also encourage you to continue using our Action Center to support the disability community.

 

Mental Health Support & Statistics

Suicide Prevention

Summer Activities

Water Safety Month

Public Policy

  • As the Public Health Emergency is coming to an end on May 11th, many important policies will come to an end. Be sure to stay updated using our guide.
  • As Congress negotiates the budget and lifts the debt ceiling, be sure to use our Action Center to ensure your Members of Congress do not reduce Medicaid and other funding that is critical for the disability community.

 

The Autism Society’s National Helpline is here to support you and provide you with the resources you need. Our Information & Referral Specialists are available Monday to Friday, 9:00 am to 7:00 pm (Eastern Time) at 800-3-AUTISM (800-328-8476) or info@autism-society.org.

The Autism Society’s mission is to create connections, empowering everyone in the Autism community with the resources needed to live fully. As the nation’s oldest leading grassroots Autism organization, the Autism Society and its 70+ local affiliates serve over half a million members of the Autism community each year. It envisions a world where everyone in the Autism community is connected to the support they need, when they need it – including education, advocacy efforts, and supports and services throughout the lifespan. If you found this article helpful, please consider supporting our efforts through a donation, every bit helps. Donate here!

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Embracing the Fulfillment Mindset: Redefining Employment for Autistic Individuals https://autismsociety.org/embracing-the-fulfillment-mindset-redefining-employment-for-autistic-individuals/ Tue, 11 Apr 2023 20:08:43 +0000 https://autismsociety.org/?p=19276 The Autism Society of America is proud to introduce one of our new national programs focused on employment, as outlined in our current strategic plan. Our employment initiative aims to create meaningful job opportunities, improve retention, and break down systemic barriers. Employment plays a pivotal role in transitions to adulthood, independent living, socialization, self-worth, and [...]

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The Autism Society of America is proud to introduce one of our new national programs focused on employment, as outlined in our current strategic plan. Our employment initiative aims to create meaningful job opportunities, improve retention, and break down systemic barriers.

Employment plays a pivotal role in transitions to adulthood, independent living, socialization, self-worth, and confidence. The Autism Society is committed to:

  • Educating employers to build inclusive hiring models
  • Training teams for supportive services and accommodations
  • Connecting Autistic employees to job opportunities
  • Working to reduce systemic barriers to meaningful employment

Through this initiative, we seek to redefine employment for Autistic individuals by embracing a Fulfillment Mindset. Recognizing that traditional notions of employment may not be ideal or accessible for everyone, our approach highlights the importance of social-emotional fulfillment for Autistic individuals in their employment journeys. In this introductory article, we will explore various avenues of employment, maintaining benefits, and the importance of including individuals with higher support needs and learning disabilities in our mission. 

The Fulfillment Mindset

The core principle of our Fulfillment Mindset is recognizing that there are numerous ways for Autistic individuals to achieve fulfillment through employment. This could include continued learning, passion projects, job/career shadowing, volunteering, coaching, and part-time or full-time integration into competitive integrated employment. By focusing on whole-person integration in employment and community surroundings, we can better support those with Autism in workplace settings and throughout their lives.

Exploring New Industries and Opportunities

It is essential for Autistic individuals to have access to a variety of industries and opportunities that align with their interests, strengths, and passions. As part of our employment focus, we will provide resources and support for exploring different fields, such as technology, arts, healthcare, and more. By doing so, we aim to empower Autistic individuals to make informed decisions about their career paths, while simultaneously promoting diversity and inclusion in the workforce. Through connections with K-12, post-secondary training and college, and with state and federal support systems, we aim to make the journey from exploration to innovation an opportunity for the Autistic community. 

Maintaining State and Federal SSDI Benefits

We understand that financial stability is crucial for many Autistic individuals and their families. Our employment initiative emphasizes the importance of maintaining any state or federal SSDI benefits while exploring fulfilling employment opportunities. By educating individuals and families about their rights and options, we aim to strike a balance between pursuing meaningful work and securing necessary financial support.

As we work towards the ability for individuals to navigate the complexities of the SSDI benefits, know that we are working to promote better transitions and supports for exploring career opportunities, and options, while simultaneously receiving benefits. No one should have their financial stability shaken by striving to integrate themselves into the workforce.

Inclusion for Individuals with Higher Support Needs and Learning Disabilities

Our commitment to the Fulfillment Mindset incorporates the idea of being fully inclusive to those who have differing needs on the Autism spectrum. We believe that everyone deserves the opportunity to experience fulfillment and contribute to their community in meaningful ways. By providing targeted resources, training, and support, we strive to create more inclusive environments and systems that ensure individuals with diverse needs can thrive in their chosen paths.

Conclusion

We at the Autism Society of America embrace the concept and ideal of a Fulfillment Mindset and aim to redefine employment for Autistic individuals and encourage social-emotional fulfillment, exploring various industries, and maintaining necessary benefits. By emphasizing whole-person integration, we hope to create a more inclusive and supportive landscape for Autistic individuals to achieve success in their employment journeys. Together, let us celebrate the unique strengths and abilities of the Autism community and work towards a future filled with diverse, fun, interesting, and fulfilling opportunities for all.

We are also dedicated to identifying organizations and programs that allow individuals with Autism, who have complex support needs, to explore their interests and expand their skills in a variety of fields and industries. If you are an organization or know of one, please reach out to us so we can work to collaborate on opportunities for all Autistic individuals. Learn more about our employment work and related resources. 

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Press Release: Autism Society of America is Calling on Congress to Address National Issues Facing the Autism Community https://autismsociety.org/press-release-autism-society-of-america-is-calling-on-congress-to-address-national-issues-facing-the-autism-community/ Tue, 28 Mar 2023 22:44:42 +0000 https://autismsociety.org/?p=19195 This Autism Acceptance Month the Autism Society of America is putting a spotlight on the crisis of understaffed and underpaid direct support professionals, inequitable access to home and community based-services, and systemic employment barriers among many other policy priorities that impact Autistic Americans. March 27, 2023, Rockville, MD — For individuals with Autism and their [...]

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This Autism Acceptance Month the Autism Society of America is putting a spotlight on the crisis of understaffed and underpaid direct support professionals, inequitable access to home and community based-services, and systemic employment barriers among many other policy priorities that impact Autistic Americans.

March 27, 2023, Rockville, MD — For individuals with Autism and their families, accessing the unique services, supports, and inclusive options that meet their needs to live fully is an ongoing struggle. The Autism Society jointly developed public policy goals with eight other leading national disability organizations for the 118th Congress outlining the needs of people with disabilities and their families.

The Autism Society of America is taking direct action at a national level on multiple priority issues that impact Autistic individuals. In particular, the organization is highlighting the importance of passing legislation that provides additional funding for home and community-based services (HCBS) and addressing employment disparities. This includes the Better Care Better Jobs Act and the HCBS Access Act.

“The current system of supports and services are set up such that there can be a sudden stop in services for the most absurd of reasons. Such policies need to change,” states Hari Srinivasan, an Autistic student at Vanderbilt, and member of the Autism Society’s Council of Autistic Advisors. “I find myself in this strange situation where the PhD stipend makes me ineligible for SSI, which in turn is linked to all state-funded disability supports and disability health insurance that I have relied on all my life. My significant Autism challenges and required supports, did not magically go away in graduate school. It is like a financial penalty on the disabled person to want to aspire for higher education and the pursuit of the American Dream.”

Currently, there is a national crisis in the availability of home and community-based services and supports for people with intellectual and/or developmental disabilities, including Autistic individuals with high support needs. It is estimated that over 820,000 individuals who require supportive care are waiting for services through Medicaid home and community-based services (HCBS) waivers. Moreover, there is no national standard for state benefits to cover personal care and respite services for people with disabilities; another part of the issue the Autism Society aims to address.

The longstanding workforce crisis, exacerbated by the COVID-19 pandemic, has led to closures of critically needed services and a denial of access to community-based support. Vacancy rates for full-time direct support positions increased roughly 45% between 2019 and 2020, partly due to low wages improperly matched for highly intensive roles.

“In all of the years I have been involved in the Autism Society, I have never been more worried about the state of our nation’s service system for people with Autism and other developmental disabilities. We receive way too many calls to our National Helpline related to individuals and families languishing on waiting lists,” said Joseph Joyce, Board Member and past Board Chair of the Autism Society of America, testifying to Congress. “We must find a way to pay trained professionals to support our loved ones.”

In addition, the Autism Society will continue its longstanding efforts to increase employment opportunities for people with Autism as well as ending discriminatory subminimum wages. At more than 70%, the underemployment and unemployment rate for Autistic individuals remains unacceptably high. The bipartisan Transformation to Competitive Integrated Employment Act (TCIEA) works to address both of these issues. The organization is also focused on addressing outdated Social Security programs that add to barriers to employment; supporting reforms that would allow people to work without losing their benefits such as the SSI Savings Penalty Elimination Act, the Social Security 2100 Act, and the Work Without Worry Act.

The Autism Society of America developed a broader set of legislative goals to guide the organization’s work over the next two years. These goals include legislation to reauthorize and expand the Autism CARES Act, prevent restraints and seclusion in schools, provide safe interactions with law enforcement and first responders, and prevent injuries related to water safety and drowning.

The Autism Society is planning a Fly-In day in April, to help connect their community members with their Members of Congress to discuss these and other issues. The organization’s Action Center keeps people informed and engaged on a number of critical issues that will make a difference in the lives of Autistic individuals and their families.

About the Autism Society of America:

The Autism Society’s mission is to create connections, empowering everyone in the Autism community with the resources needed to live fully. As the nation’s oldest leading grassroots Autism organization, the Autism Society and its approximately 70+ local affiliates serve over half a million members of the Autism community each year. It envisions a world where everyone in the Autism community is connected to the support they need, when they need it – including education, advocacy efforts, and supports and services throughout the lifespan. During Autism Acceptance Month, the Autism Society has a goal to fundraise $350,000 to expand acceptance in practice for the Autism community. For more information, go to www.AutismSociety.org, Facebook, Instagram or Twitter.

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March Resources: Developmental Disabilities Awareness Month & National Women’s History Month https://autismsociety.org/march-resources-developmental-disabilities-awareness-month-national-womens-history-month/ Wed, 01 Mar 2023 22:09:20 +0000 https://autismsociety.org/?p=18677 This March, we will focus on Women's History Month to highlight Autistic women and diagnostic research. Additionally, we will observe Developmental Disabilities Awareness Month and share resources on signs, screening, and diagnosis. Our public policy resources provide guidance on navigating advocacy after the conclusion of the Covid-19 Public Health Emergency (PHE) on May 2023.   [...]

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This March, we will focus on Women’s History Month to highlight Autistic women and diagnostic research. Additionally, we will observe Developmental Disabilities Awareness Month and share resources on signs, screening, and diagnosis. Our public policy resources provide guidance on navigating advocacy after the conclusion of the Covid-19 Public Health Emergency (PHE) on May 2023.

 

Developmental Disabilities Awareness Month

Women & Autism: National Women’s History Month

Signs & Characteristics

Public Policy

 

The Autism Society’s National Helpline is here to support you and provide you with the resources you need. Our Information & Referral Specialists are available Monday to Friday, 9:00 am to 7:00 pm (Eastern Time) at 800-3-AUTISM (800-328-8476) or info@autism-society.org.

The Autism Society’s mission is to create connections, empowering everyone in the Autism community with the resources needed to live fully. As the nation’s oldest leading grassroots Autism organization, the Autism Society and its 70+ local affiliates serve over half a million members of the Autism community each year. It envisions a world where everyone in the Autism community is connected to the support they need, when they need it – including education, advocacy efforts, and supports and services throughout the lifespan. If you found this article helpful, please consider supporting our efforts through a donation, every bit helps. Donate here!

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February Resources: Black History Month; Screening & Diagnosis for BIPOC Communities https://autismsociety.org/february-resources-black-history-month-screening-diagnosis-for-bipoc-communities/ Mon, 30 Jan 2023 16:48:15 +0000 https://autismsociety.org/?p=18621 This February, we're focusing on Black History Month and addressing inequalities in screening, diagnosis, and care. We will also feature vaccine-related resources created by the Autism Society’s Vaccine Education Initiative.   Screening & Diagnosis for BIPOC communities Autism Society Resource: Supporting the BIPOC Autism Population (Facebook Live Episode)  Autism comorbidities reflect racial, ethnic disparities  Most [...]

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This February, we’re focusing on Black History Month and addressing inequalities in screening, diagnosis, and care. We will also feature vaccine-related resources created by the Autism Society’s Vaccine Education Initiative.

 

Screening & Diagnosis for BIPOC communities

 

Black History Month: Autism & Race

 

Addressing global inequities in screening, diagnosis & care

 

Vaccine Education Initiative

 

The Autism Society’s National Helpline is here to support you and provide you with the resources you need. Our Information & Referral Specialists are available Monday to Friday, 9:00 am to 7:00 pm (Eastern Time) at 800-3-AUTISM (800-328-8476) or info@autism-society.org.

The Autism Society’s mission is to create connections, empowering everyone in the Autism community with the resources needed to live fully. As the nation’s oldest leading grassroots Autism organization, the Autism Society and its 70+ local affiliates serve over half a million members of the Autism community each year. It envisions a world where everyone in the Autism community is connected to the support they need when they need it – including education, advocacy efforts, and supports and services throughout the lifespan. If you found this article helpful, please consider supporting our efforts through a donation, every bit helps. Donate here!

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January Resources: Goal Setting, Establishing Routines, New Diagnosis https://autismsociety.org/january-resources-goal-setting-establishing-routines-new-diagnosis/ Mon, 02 Jan 2023 06:30:06 +0000 https://autismsociety.org/?p=18524 Happy New Year from the Autism Society of America! This January, our focus is on goal setting, establishing routines for the New Year, and receiving an Autism diagnosis. Our Public Policy resources include the 2023 US House legislative calendar and an opportunity for constituents to contact newly elected Congressional Members.   New Diagnosis Autism Society [...]

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Happy New Year from the Autism Society of America! This January, our focus is on goal setting, establishing routines for the New Year, and receiving an Autism diagnosis. Our Public Policy resources include the 2023 US House legislative calendar and an opportunity for constituents to contact newly elected Congressional Members.

 

New Diagnosis

Goal Setting & Routines

Public Policy

  • The United States House legislative calendar for 2023 was released by Rep. Steve Scalise, R-La., who is expected to become majority leader when Republicans take control of the chamber in January. Review the calendar here.
  • Let public policy team members know if you have information that might be helpful about a new Member of Congress elected from your state.

 

The Autism Society’s National Helpline is here to support you and provide you with the resources you need. Our Information & Referral Specialists are available Monday to Friday, 9:00 am to 7:00 pm (Eastern Time) at 800-3-AUTISM (800-328-8476) or info@autism-society.org.

The Autism Society’s mission is to create connections, empowering everyone in the Autism community with the resources needed to live fully. As the nation’s oldest leading grassroots Autism organization, the Autism Society and its 70+ local affiliates serve over half a million members of the Autism community each year. It envisions a world where everyone in the Autism community is connected to the support they need, when they need it – including education, advocacy efforts, and supports and services throughout the lifespan. If you found this article helpful, please consider supporting our efforts through a donation, every bit helps. Donate here!

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Guest Post: Recognizing National Family Caregivers Month by Sam Brandsen https://autismsociety.org/guest-post-recognizing-national-family-caregivers-month-by-sam-brandsen/ Mon, 14 Nov 2022 14:46:50 +0000 https://autismsociety.org/?p=18380 In the following blog post, our featured author Sam Brandsen, a member of the Autism Society of America’s Council of Autistic Advisors, uses identity-first language. Autism and the experiences of being Autistic are myriad and unique; Given the variety of individual experiences and preferences, we always recommend asking an individual how they prefer to describe [...]

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In the following blog post, our featured author Sam Brandsen, a member of the Autism Society of America’s Council of Autistic Advisors, uses identity-first language.

Autism and the experiences of being Autistic are myriad and unique; Given the variety of individual experiences and preferences, we always recommend asking an individual how they prefer to describe their identity. The Autism Society honors and recognizes that both identifiers are valid for individuals; our practice is to start written materials with person-first language and use identity-first language as a secondary reference after the opening use.


 

I am an Autistic parent to a wonderful, Autistic 4-year-old. 

The first couple of years of his life were very challenging for two main reasons. The first reason was that he seemed almost constantly uncomfortable due to chronic sleep problems and other medical issues. 

The second reason was an overwhelming feeling of isolation and sadness. I worried about how other people would treat him, and whether he would be bullied by others for his differences. I wanted to protect him from any stigma or unfairness in society, but in many instances felt helpless to make things better for him. When he was an infant, visits from loved ones would often quickly turn into comments or questions about why he seemed so different from other babies. While we had some wonderful part-time babysitters, we also had many experienced babysitters quickly become frustrated or overwhelmed, describing him as “too sensitive” or “too fussy”. I briefly attempted to enroll him part-time in daycare when he was around 12 months old, but one of the teachers soon began to make repeated disparaging comments towards him and he seemed to be developing intense anxiety regarding daycare quickly.  As a result, I ended up being a stay-at-home parent and worked on finishing my Ph.D. when he slept. 

Clinical appointments could also be difficult at times. The clinicians working with him were extremely kind, yet it often felt like there was something missing. For example, I didn’t understand the suggestions to change our perfectly enjoyable play routines to incorporate more eye contact or facial expressions. To use a silly analogy, it felt a little bit like suggesting that a neurotypical family adjust their play routine to incorporate more hand-flapping or rocking. 

I very clearly remember the day that I began to read The Mind Tree by Tito Mukhopadhyay, a nonspeaking Autistic person who writes independently. It was the first material I had read from an Autistic person with higher support needs, and it eloquently described (among other things) the gap between Tito’s vibrant internal world and intentions, and how his behavior was perceived by others. Perspectives from Autistic people, especially those with higher support needs, had been the piece I was missing. 

For the most part, life is joyful now. I wake up almost every morning to my child saying the exact same phrase: “It’s good to see you, Sam! Take a drive and see the precious spiderweb?” His special interest at the moment is spiderwebs, and it seems like he begins thinking about them (and how he can persuade me to drive him to the forest to search for spiderwebs!) from the moment he wakes up. So we go to the forest and I follow him around as he effusively compliments every spiderweb he sees. Maybe there is some underlying academic function to this– perhaps he will eventually do research related to insects or spiderwebs. But maybe not, maybe the only function is that he enjoys it and it seems to help him thrive, and that is also worthwhile.  

Stimming can also be a valuable form of communication. I know which movements mean that he is happy, what means that he is overstimulated, what means that he is relaxed and content, and so on. 

There has also been happiness in “thinking outside the box”. For example, he sometimes likes to push an empty playground swing or put leaves onto the swing and push them. I used to wonder when he was going to actually play with the swing before realizing that he was playing with the swing! I was the one with an overly rigid expectation in assuming that the only way to play with a swing is for the child to sit on it and be swung back and forth. 

Of course, for any child, there will be necessary lessons on personal space and kindness to others. In my child’s case, there are also some concerns about things such as road safety or co-occurring conditions such as sleep concerns. But to me, these challenges are just all the more reason to advocate for more research and initiatives focused on quality of life. 

We’ve been very lucky to be able to find and create a community where he can be appreciated as he is. I turned some of the frustration at the lack of community into a motivation to create resources; I started a neurodiversity-affirming playgroup for families as well as a disability justice summer camp and other community events. I actually ended up switching research fields entirely from quantum information theory to Autism research, due to an intense desire to learn more about what supports will enhance the quality of life for  Autistic children and adults. We were also able to connect with other neurodiversity-affirming groups in the area and simply find spaces where he can be himself and be appreciated for that. 

 


Read Sam’s bio here.

Please note that all opinions expressed in this post are a reflection of the author’s personal experiences or preferences and do not reflect the opinions of the Autism Society of America.  

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November and December Resources: National Family Caregivers Month and Holiday Planning https://autismsociety.org/november-and-december-resources-national-family-caregivers-month-and-holiday-planning/ Mon, 31 Oct 2022 19:50:30 +0000 https://autismsociety.org/?p=18351 For November and December, our focus is on National Family Caregivers Month, holiday planning, and preparation for travel and social events. Our Public Policy resources include an overview of the American Rescue Plan, early intervention planning, and access to our Action Center. National Family Caregivers Month Facebook Live: National Family Caregiver’s Month Episode Facebook Live: [...]

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For November and December, our focus is on National Family Caregivers Month, holiday planning, and preparation for travel and social events. Our Public Policy resources include an overview of the American Rescue Plan, early intervention planning, and access to our Action Center.

National Family Caregivers Month

Holiday Planning & Preparation

Policy Resources

 

The Autism Society’s National Helpline is here to support you and provide you with the resources you need. Our Information & Referral Specialists are available Monday to Friday, 9:00 am to 7:00 pm (Eastern Time) at 800-3-AUTISM (800-328-8476) or info@autism-society.org.

The Autism Society’s mission is to create connections, empowering everyone in the Autism community with the resources needed to live fully. As the nation’s oldest leading grassroots Autism organization, the Autism Society and its 70+ local affiliates serve over half a million members of the Autism community each year. It envisions a world where everyone in the Autism community is connected to the support they need, when they need it – including education, advocacy efforts, and supports and services throughout the lifespan. If you found this article helpful, please consider supporting our efforts through a donation, every bit helps. Donate here!

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Guest Post: Recognizing National Disability Employment Awareness Month by Darrius Frazier https://autismsociety.org/guest-post-recognizing-national-disability-employment-awareness-month-by-darrius-frazier/ Mon, 31 Oct 2022 15:45:20 +0000 https://autismsociety.org/?p=18331 In the following blog post, our featured author Darrius Frazier, a member of the Autism Society of America’s Council of Autistic Advisors, uses person-first language. Because Autism and the experiences of living with Autism are myriad and unique, and individuals who self-advocate have preferences about how to describe their identity, we always recommend asking an [...]

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In the following blog post, our featured author Darrius Frazier, a member of the Autism Society of America’s Council of Autistic Advisors, uses person-first language.

Because Autism and the experiences of living with Autism are myriad and unique, and individuals who self-advocate have preferences about how to describe their identity, we always recommend asking an individual what their preference is. The Autism Society honors and recognizes that both identifiers are valid for individuals, our practice is to start written materials with person-first language and use identity-first language as a secondary reference after the opening use.


As a person of color within the Autism spectrum, currently residing in central Illinois, (a rural part of the state), I am fortunate enough to have had the opportunity to network with organizations that specialize in providing services for people with various types of disabilities and help them find employment. For nearly a year, I worked with one of these organizations, which helped me find a job at a national pizza chain. However, I was not satisfied when, only ninety days later, the company stopped providing all the support services I was receiving.

One thing I wish our employers would know is that many accommodations do not cost anything, like sensory considerations, communication preferences, and scheduling. Also, many states offer subsidized support for job coaches and other support people to help train and support if needed. Many employees with Autism are loyal, hardworking, and eager for the opportunity to work.

The way we can best support employees with Autism is to provide them with network opportunities with different businesses that are willing to provide accommodations and support for people with disabilities when necessary. When assisting in helping people with Autism find gainful employment, have them create a resume if they haven’t done so already. In doing this, you will be able to find the strengths of the prospective employee and direct them to the business that would help them grow as an individual as well as an employee.


Read Darrius’ Bio here.

Please note that all opinions expressed in this post are a reflection of the author’s personal experiences or preferences and do not reflect the opinions of the Autism Society of America.  

 

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Guest Post: The Bullying Nobody Names by Kate Gladstone https://autismsociety.org/guest-post-the-bullying-nobody-names-by-kate-gladstone/ Tue, 25 Oct 2022 15:46:54 +0000 https://autismsociety.org/?p=18315 In the following blog post, our featured author Kate Gladstone, a member of the Autism Society of America’s Council of Autistic Advisors, uses identity-first language. Because Autism and the experiences of living with Autism are myriad and unique, and individuals who self-advocate have preferences about how to describe their identity, we always recommend asking an [...]

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In the following blog post, our featured author Kate Gladstone, a member of the Autism Society of America’s Council of Autistic Advisors, uses identity-first language.

Because Autism and the experiences of living with Autism are myriad and unique, and individuals who self-advocate have preferences about how to describe their identity, we always recommend asking an individual what their preference is. The Autism Society honors and recognizes that both identifiers are valid for individuals; our practice is to start written materials with person-first language and use identity-first language as a secondary reference after the opening use.


With all that is said and written about bullying, one of its forms is almost always ignored — yet it is the commonest form I’ve experienced at home, in the community, at school, and in the workplace. It’s the practice of systematically bullying a person who gets something right, that is more socially acceptable to get wrong. In my experience, Autistics undergo this style of bullying more than neurotypical people. 

In my own life, for instance, it’s been at least 75% of the bullying I’ve undergone. I call this form “information scapegoating” — it’s an intensified version of gaslighting. In simple gaslighting, one person misrepresents another’s experiences, observations, and prior knowledge during interactions with the other person; claiming that the other person’s experiences/observations/knowledge are not only wrong, but are actually evidence of something wrong within that person, such as a disease or an intellectual disability. In information scapegoating, the force behind the misrepresentation is not just one person, but is a community flexing its social and cultural muscle against someone who knows (and cares about) things that are outside the community’s consensus.

Information scapegoating began in childhood for me, decades before my diagnosis, at the hands (and mouths) of other kids and family members. That circle later expanded to include classmates, teachers, co-workers, employers, and/or therapists. 

Here’s an information scapegoating incident from my own life: one of the mildest. In fourth grade, my English teacher (who’d had several “Teacher of the Year” awards from her principal) assigned us a famous short story which (she said) was by Mark Twain. During classroom discussion, I asked her to please help me understand how a “Mark Twain story” mentioned an event that occurred decades after his death, had a publication date 36 years after Twain’s death, and had a by-line that did not use his real name or alias names to document his stories. The teacher replied:  “Only someone with a defective mind would think that way. This is a very famous story, and the reason it’s famous is for being by Mark Twain. Nobody else in the room has a problem with that, because nobody else needs to go by facts and figures like some robot.” Thereafter, she publicly called me a “broken robot,” “brain-damaged computer,” and other names, and encouraged my classmates to do so too — but first, she sent me to the guidance counselor. “Yes, technically it seems to be so-called ‘true’” — the guidance counselor said as he waggled his fingers like dancing quotation marks. “Objectively this famous story wouldn’t have been by Twain. But in American culture, it is socially accepted this famous story is by Twain. Even though it was, technically, written by someone else that nobody ever heard of. You need to learn to instinctively perceive that the real reality, is people, not facts. Can you be the bigger person, and set aside your concern with facts in order to subordinate yourself to the bigger social picture, so you can grow into a full human being?  Go back to your teacher and your class and apologize for not being a part of the real world of people and shared ideas.”

I didn’t apologize — and I don’t want to tell you what happened next. Here’s what I learned from that day, and from thousands of other times I’ve been told  (by words and/or actions) that anyone whose perceptions are excluded by the social group may be — and should be — bullied in the name of group consensus:

  • Many people behave as if they thought that the ultimate reality was a group consensus.
  • Those people, and the groups and cliques they form, often gain social authority and power over others.
  • They regard social “fitting in” as the right way to be a person… To me, Autistics, in such an environment are not perceived as “people” — and therefore are targets for any form of scapegoating, bullying, or other assaults.
  • Societies, cultures, and subcultures that advance or allow information scapegoating are communities that rely on massive barriers of exclusion against anyone who thinks or acts differently.

How can we — as a society, and as a species — make sure that each and every child is reared as a human being, and is treated lifelong as a person, not as a “broken robot”? Autism is not a rubber stamp, blotting out one’s individual identity as if canceling a passport. Autistics, like the rest of the human race, deserve a culture where flourishing is possible. 

How do we get there from here? Some suggestions: 

  • Raise each child to be aware — and to care — that social consensus is not the ultimate value.
  • Teach our children — and ourselves — that information scapegoating stops here, now, forever. Like all bullying, it is a form of torture. Teachers, counselors, and therapists especially need to make sure that no child, teen, or adult is ever penalized, slandered, or assaulted (verbally or physically) for knowing something that some other person does not yet know.
  • Prioritize research that can lead to systemic change in preventing information scapegoating, identifying it, and reversing the serious social and psychological damages that it creates. All research teams and the research subject pools, need to include and prioritize the survivors of information scapegoating, including Autistics (some of the people who are most often and  most fiercely,  targeted in this particular form of assault.)

Read Kate’s bio here.

Please note that all opinions expressed in this post are a reflection of the author’s personal experiences or preferences and do not reflect the opinions of the Autism Society of America.  

 

The post Guest Post: The Bullying Nobody Names by Kate Gladstone appeared first on Autism Society.

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