We're not closing, we're evolving – a tribute to employment and change

Tonight, I saw a post about a young woman with down syndrome working as a cart attendant at a Kroger and how some customers treated her, but she kept her composure and did her job anyway.

Likewise, this was my first job 17 years ago. My job also included cleaning, trash removal and bagging groceries. It wasn’t all sunshine and rainbows but at 18 and then making $5.15 an hour for 20 hours a week, I just did it as something to do. I only had the job for four months through a job shadowing program where the supporting agency paid the wages, something I later knew and now have a distaste for. Nonetheless it was work and when I was done I was glad.

Staying with that same organization for almost 17 years now, 16 at the same employment support program, and nearly ten years at my present employment position, I have garnered the skills necessary to work and am in what is now defined as a supported position and can have the position as long as I shall choose, and plan to do so.

Nonetheless, today is a monumental day as that store I first worked in 17 years ago hasn’t been under the same brand or management for 15 of those years, yet this day is bittersweet. The store is now a locally based store that has been around since 1947 in the hills of Appalachia started in humble beginnings in the founder’s home providing low frills and low cost food to those in need. Later that site would evolve in what we would know as a strip mall, but instead was the localized version of wooden building and roofed with tarpaper with haphazard construction. Nonetheless, it generated millions in nearly 50 years and as building code could no longer support it, the store I worked for would move to the county seat and become the flagship store of that owners set of stores under its brand.

However as the years would draw, I would continue to shop there, and memories would always remind me of where I stated my employment journey. That local business would open a mini store in the neighborhood some years before I moved here last year, and at that time when I first moved here you could sense a change as the building, a retrofitted office building terminated the leases of other tenants in the complex, before having constant construction over the past year.

Last summer an announcement was made that a bakery and cafe (like a Panera or Starbucks) would open adjacent to this store and it did with some fanfare a few months ago and I do like it as it is a nice addition to this neighborhood. However, in the mini-store and old supermarket, you could sense little by little change was happening.

Now I am not a liker of change, and this business as my local grocery supplier made this difficult. Things I ordered through the online grocery service were oftentimes unavailable. Things were moved in both, stores – often, I knew it was the beginning of the end

Then two weeks ago – the news came on Facebook

The store I started my employment in would be closed and operations would evolve between their first site as they constructed pole-type buildings there and the new bakery and the store in my neighborhood, which they claim would triple in size. Yet, everyday I visit the market to grab something and yet something is different, not to mention their old mentality of plastic and buckets on the floor to overstimulate the senses, let’s hope its a transition.

Nonetheless that supermarket that I worked in 17 years ago is closed for now, but as many things in our lives, we must put a close to the past and learn and grow from it – along with a evolving business that I grew up on, we must adapt and move on.

Young adults with autism flounder in face of service gaps

I am the mother of Elijah, a 25-year-old young man on the autism spectrum. When he received his diagnosis at age 4, following two years of terrifying seizures, I was teaching German literature at Bard College in New York. I loved being a professor, but when Elijah’s struggles began to have a greater impact on his and my daily life, I chose to switch careers and concentrate on education and advocacy — for him, and also for other children with autism.

During Elijah’s time in school, I saw gaps in knowledge and help for those on the spectrum. Although my focus at the time was on children, the lack of services has persisted, undermining a whole generation of youth with autism through their school years and into young adulthood.

This topic is of urgent importance: An estimated half million young Americans with autism will make the transition to adulthood over the next decade. A report released in April captures the story of this overlooked generation in hard numbers.

When Elijah was 9 and 10 years old, he was repeatedly bullied by a group of students at his public school. Yet he received little support from teachers and administrators, who were largely untrained in dealing with students with autism. He began having difficulties in the classroom. He had frequent outbursts, saying he wanted to kill himself, but teachers dismissed his behavior as a de facto expression of autism rather than as a sign of a communication deficit that proper support strategies could help remedy.

Something had to change — and fortunately, it did. With generous funding from a local philanthropist in our hometown of Woodstock, New York, and with cooperation from the school district, I helped build a nonprofit educational program for middle and high school children on the spectrum. The program drew students from nine local districts. Within weeks of opening in 2002, the Autistic Strength, Purpose and Independence in Education School, or the ASPIE School as we called it, was already at capacity — 8 students the first year and 16 the second.I read his outbursts as the cry for help that they were. At the end of fifth grade, Elijah became severely depressed. He often refused to go to school and, once there, was repeatedly sent to the school psychologist, who conducted the mandated suicide assessment over and over. Yet none of these professionals gave him ways to confront the challenges that define autism.

Telling statistics:

I should have known that we were onto something when families from across the country began calling the school, wanting to move to our community so their children could enjoy a more positive school experience. It wasn’t just the academic curriculum, although this was designed specifically for children on the spectrum. Teachers supported communication and social skills development in the classroom. Educational staff also empowered students to advocate for themselves in the classroom and outside of school by bolstering students’ knowledge about their disability.

Home truths

Perspectives of a woman and mother with autism. Read more columns »

The need for these kinds of targeted programs and career services has grown enormously. Two decades ago, when Elijah received his diagnosis, just 4 in 10,000 children had an autism diagnosis. Today, according to the U.S. Centers for Disease Control and Prevention, the rate is roughly 1 in 68.

In April, the A.J. Drexel Autism Institute in Philadelphia published the first report documenting the effects of insufficient support for young people like Elijah. The report exposes a dramatic drop off in services, what it terms a “services cliff” that young adults experience as they transition from secondary education into the larger world.

The key findings of the 68-page report read like the story of Elijah’s life, validating what many families know is amiss. The findings also quantify the implications of systemically ineffective planning for the transition to adulthood and reveal the hardships young adults face as they make their first, fledgling attempts to negotiate life after school.

Like Elijah, roughly half of his peers are bullied in school. Only 58 percent had a transition plan in place by the federally mandated age of 16. (Even though I was working in the field, Elijah never had an adequate plan at any age from the public school.)

Approximately one in four young adults on the autism spectrum, my son included, receive no services that could help them become employed, continue their education or live independently. More than one-third are “disconnected during their early 20s,” the researchers found, meaning they never get a job or continue education after high school. Elijah experienced this same isolation in his early 20s.

The biggest deterrent to developing evidence-based programs for people with autism is the lack of available data. “Our situation is like driving a car through the fog with no dashboard,” says Paul Shattuck, director of the institute’s Life Course Outcomes Program.

Looking forward:

As hard as our struggles have been, it is my nature to be hopeful about the future. I hope that the alarming results from the report will lead to more productive solutions.

Some organizations have already begun establishing programs that use evidence-based methods to anticipate the needs of young people transitioning into adulthood.

For example, Phoenix-based First Place Arizona creates and assesses solutions for employment, postsecondary education and living arrangements for adults with autism and other disorders. Ascendigo, Inc. of Carbondale, Colorado, is another progressive solution, offering varied challenges in outdoor education and sports for adults with autism.

The Drexel Institute is embarking on a project that will examine how various groups within the autism community — adult service providers, researchers and people with autism themselves — think about outcomes. “How measures are applied is all over the map,” says Anne Roux, who led the institute’s report, “most often with no input from adults themselves, families or communities.”

People with autism are also serving as their own change agents. The Autistic Global Initiative, a program I direct for the nonprofit Autism Research Institute, is made up entirely of adults with autism working in the disability, medical, advocacy and education fields. The initiative develops training programs and provides advice to organizations from the very people they aim to help.

Three years after I started the ASPIE School, a budget crisis at the partner school forced our program to close. Elijah moved to a private school and later, at age 20, worked hard to complete his high school equivalency. He diligently sought employment and worked at small jobs for brief periods, completing a few community college courses and earning mostly As and Bs.

As he celebrated his 25th birthday last month, Elijah also marked his first full year of part-time employment clearing tables at a restaurant in Woodstock. He rents a studio apartment and makes ends meet on modest paychecks and social security income. He calls me every few days, often to share stories about his coworkers — who value his sense of humor and work ethic — or to solve some problem he’s grappling with. As he takes on more responsibility at work, for example, he’s trying to figure out how to ask his boss for a raise.

Elijah and his peers with autism have always been overachievers working against great societal odds. Now we have the national indicators report as proof of that perspective. It’s up to schools and publicly funded agencies that support people with disabilities to take this information as a call to action and to begin directing young people with autism toward employment, community engagement and fulfilling lives.

Originally published on Spectrum

Spectrum logo

var theUrl = document.URL;var theUrlArray = theUrl.split(“//”);var postProtocol = theUrlArray[1];var postProtocolArray = postProtocol.split(“/”);var theDomain = postProtocolArray[0];(function(i,s,o,g,r,a,m){i[‘GoogleAnalyticsObject’]=r;i[r]=i[r]||function(){(i[r].q=i[r].q||[]).push(arguments)},i[r].l=1*new Date();a=s.createElement(o),m=s.getElementsByTagName(o)[0];a.async=1;a.src=g;m.parentNode.insertBefore(a,m)})(window,document,’script’,’//www.google-analytics.com/analytics.js’,’ga’);ga(‘create’, ‘UA-8526335-18’, theDomain, {‘name’:’spectrumRepublish’});ga(‘spectrumRepublish.send’, ‘pageview’).ga(‘set’,’republish’,’https://www.spectrumnews.org/opinion/viewpoint/young-adults-with-autism-flounder-in-face-of-service-gaps/’);

How to help young adults with autism transition to adulthood

Listen to this story: https://webplayer.spokenlayer.net/0.1/webplayer.js

 
Listen to this story on iTunes, Spotify, iHeartRadio and Google Play, or with Alexa or Google Home. Ask for ‘Spectrum Autism Research’ For the past 20 years, my colleagues and I have run a social-skills group for children with autism, ages 5 to 18 years. Our program teaches the children how to recognize their own emotions, have conversations, solve problems and build genuine friendships. About five years ago, some of those who had finished the program reached out to us for help navigating the adult world. They were concerned about the challenges involved in attending college, picking a career path, succeeding in the workplace, living independently and forming social and romantic relationships. There were few resources available to them. Adults with autism report poorer social and vocational outcomes than any other disability group1,2. They often don’t earn a living wage, have a partner or family, or participate in the community. They also frequently contend with physical and mental health problems. My colleagues and I wanted to help these young people. We created a curriculum for young adults with autism that helps them to better manage the stress and challenges associated with the transition to adulthood. It also teaches their parents and other helpers how to assist them in learning and implementing skills. We first analyzed the literature on interventions used in adults with schizophrenia, who have similar problems adapting to the demands of adult life. Based on those, we developed a 20-week program for young adults with autism. The program combines an age-appropriate version of our social-skills curriculum with a unit called Functional Adaptive Skills Training, developed at the University of California, Los Angeles, that teaches social, organizational and other daily-living skills in a group format3. Our pilot trial included 13 participants with autism aged 18 to 24, with no control group. Parents of the participants also met weekly to discuss their adult child’s difficulties and attended lectures about adult services. Our unpublished results suggest that the young adults and their parents had high levels of satisfaction with the training. The participants also reported an improvement in their planning and organizing skills, and some relief from depression.

Version 2.0:

My team and our collaborators have also developed a second-generation program that includes modules on handling stress and developing coping skills. The goal is to prevent young adults from avoiding situations — a behavior we believe accounts for the discouraging statistics on social and vocational outcomes. Our 20-week program, ACCESS, includes groups for both young autistic adults and their ‘social coaches,’ such as parents and partners. The curricula and assignments are designed to give these dyads opportunities to interact in a mature, egalitarian and collaborative way. Four introductory lessons teach foundational concepts, such as understanding different social circles, the idea that social behavior differs based on context and that adults relate to family members, friends and bosses in different ways. The lessons also include active listening and giving and receiving feedback. The second module consists of six lessons that teach techniques based on principles of cognitive behavioral therapy (CBT) for dealing with negative feelings and engaging in uncomfortable situations instead of avoiding them. The third module includes five lessons designed to help participants better understand and build relationships with friends and to clarify that the rules for relating to friends are different than those used when relating to a boss or parent, again using CBT techniques to engage instead of avoid. The last four lessons center on the workplace. They focus on adopting a ‘can-do’ attitude, being aware of social circles involving colleagues and bosses, and giving and receiving feedback on the job. Participants also are required to have some form of paid or volunteer job, and to complete weekly assignments with their social coaches. We conducted a trial of the program using participants on the waiting list as a control group. Our analysis included 41 people, aged 18 to 38 years, who have a verified autism diagnosis and an intelligence quotient greater than 704. Participants were randomized to our intervention or to a treatment-as-usual control group. People in the latter group received the intervention six months after the trial. We assessed participants and social coaches, using questionnaires to measure social and adaptive functioning, self-determination, self-efficacy and anxiety.

Lessons learned:

The results of the trial were modest but encouraging. Although participants did not report a decline in anxiety, their global adaptive functioning improved, according to their social coaches. The improvements were driven by gains in home living skills, such as taking responsibility for cleaning, property maintenance, food preparation and other household chores. The social coaches also reported improved communication and self-direction, as well as self-determination skills such as goal-setting, planning and self-advocacy. The participants reported greater confidence in their ability to ask for social support from family, and even friends, in times of stress. As before, their satisfaction with the intervention was extremely high. The trial taught us important lessons. First, although it is never too early to help people with autism develop the adaptive, social, vocational and self-determination skills they will need in adult life, some of these skills may need to be relearned at key transition periods. Many of our participants had been members of our child and adolescent social-skills groups, but they needed to learn to adapt the skills for adult contexts. Similarly, many of the parent social coaches remarked that as their children became young adults, they needed to retool their skills as advocates, given the dramatic changes to the service network. Second, we found that 20 weeks is not enough to teach about adult life. We frequently joked that any group of lessons could be expanded into its own curriculum. Third, the participants reported that the most valuable components of the program are learning about the work environment, learning organizational skills and coming to appreciate how they engaged in distorted, and typically negative, thinking about their own strengths and challenges. We also marveled at how the parents in our study navigated the balance between enabling independence and ensuring the safety of their adult children. For example, one of the parents in our group allowed her son to travel alone to New York City to visit a friend. This experience made him feel strong and independent and eased his depression. Helping parents safely allow their children to be more independent has the potential to be an important new area for research. This year, we are continuing to offer the program on a fee-for-service basis. We hope to eventually write and publish a manual for an intervention that could be used more widely for young autistic adults anywhere. Marjorie Solomon is professor of psychiatry at the MIND Institute at the University of California, Davis.
References:
  1. Baldwin S. et al. J. Autism Dev. Disord. 44, 2440-2449 (2014) PubMed
  2. Taylor J.L. and M.R. Mailick Dev. Psychol. 50, 699-708 (2014) PubMed
  3. Patterson T.L. et al. Schizophr. Res. 86, 291-299 (2006) PubMed
  4. Oswald T.M. et al. J. Autism Dev. Disord. 48, 1742-1760 (2018) PubMed

Originally published on Spectrum

Spectrum logo

var theUrl = document.URL;var theUrlArray = theUrl.split(“//”);var postProtocol = theUrlArray[1];var postProtocolArray = postProtocol.split(“/”);var theDomain = postProtocolArray[0];(function(i,s,o,g,r,a,m){i[‘GoogleAnalyticsObject’]=r;i[r]=i[r]||function(){(i[r].q=i[r].q||[]).push(arguments)},i[r].l=1*new Date();a=s.createElement(o),m=s.getElementsByTagName(o)[0];a.async=1;a.src=g;m.parentNode.insertBefore(a,m)})(window,document,’script’,’//www.google-analytics.com/analytics.js’,’ga’);ga(‘create’, ‘UA-8526335-18’, theDomain, {‘name’:’spectrumRepublish’});ga(‘spectrumRepublish.send’, ‘pageview’).ga(‘set’,’republish’,’https://www.spectrumnews.org/opinion/viewpoint/help-young-adults-autism-transition-adulthood/’);

A 2020 Resolution to Unmask and Live Unapologetically and Authentically » The Aspergian

Wendy Katz has an inspiring, empowering, beautiful resolution mighty enough to last for a decade of work and revolutionary in its simplicity.Read More →

Source: A 2020 Resolution to Unmask and Live Unapologetically and Authentically » The Aspergian

Chicago school's staff threw 9-year-old into the cold and reported him missing, lawsuit says

Yvonne Pinkston said officials at Fiske Elementary School abused her son.

The family of a 9-year-old Chicago student sued the city’s school system this week, accusing staff members of manhandling the boy and forcing him out of the building in 40-degree weather without a coat.

Yvonne Pinkston, the boy’s mother, said officials at Fiske Elementary School on Chicago’s South Side threw her son out into the cold alone while only wearing short sleeves in March after he complained about being bullied by classmates, according to the lawsuit.

The Herbert Law Firm, which is representing the family, released surveillance video from the school, appearing to show a security guard dragging the boy into the principal’s office and then forcing the fourth-grader out of the building as the school’s counselor and principal watched from nearby.

“He went to all of the doors to see if they were open and all of the doors were locked … so he just sat there and he said he cried,” Pinkston told reporters Wednesday.

The family of a 9-year-old Chicago student sued the city’s school system this week, accusing staff members of abuse, harassment and discrimination.
via WLS

School staff eventually called 911 to request an ambulance, claiming the child, who was listed as K.S. in the suit, had been scratching, biting and kicking, according to the suit, which was filed on Monday. They also reported him missing, but the law firm said they fabricated the entire story.

“CPS officials at Fiske Elementary School lied to police after they shoved and pushed a nine-year-old boy onto the streets of Englewood, one of Chicago’s most violent neighborhoods, with no coat in cold weather during the middle of the school day and claimed he was a ‘missing person who was violent,'” the law firm said in a statement. “About 30 minutes later, police found the boy outside in the cold terrified and crying. The video shows that school officials lied.”

School staff eventually called 911 to request an ambulance, claiming the child, who was listed as K.S. in the suit, had been scratching, biting and kicking, according to the suit, which was filed on Monday. They also reported him missing, but the law firm said they fabricated the entire story.

“CPS officials at Fiske Elementary School lied to police after they shoved and pushed a nine-year-old boy onto the streets of Englewood, one of Chicago’s most violent neighborhoods, with no coat in cold weather during the middle of the school day and claimed he was a ‘missing person who was violent,'” the law firm said in a statement. “About 30 minutes later, police found the boy outside in the cold terrified and crying. The video shows that school officials lied.”

The video shows the boy wearing a short-sleeved shirt and khakis in temperatures barely above freezing.

“I feel like everybody in the video that just sat here and just let it happen, nobody stopped it, someone needs to go to jail for it or something,” Pinkston said. “That’s neglect. It’s endangerment. Anything could have happened to my son out there in that neighborhood.”

The lawsuit, which names the city, the board of education and three school officials as defendants, claims the child was subjected to a hostile educational environment and alleges battery, excessive force and intentional infliction of emotional distress.

The family of a 9-year-old Chicago student sued the city’s school system this week, accusing staff members of abuse, harassment and discrimination.The family of a 9-year-old Chicago student sued the city’s school system this week, accusing staff members of abuse, harassment and discrimination.via WLS

“K.S.’s experience at Fiske has left him with lasting, emotional wounds,” the lawsuit said. “K.S. sees a psychologist weekly to help him overcome the trauma he endured at the hands of the school administrators at Fiske.”

The family is requesting a jury trial.

The Chicago Public School Board said it was deeply disturbed by the claims levied by the family, but it declined to comment on the pending litigation.

“Every CPS student deserves access to a safe and welcoming school environment, and the district takes seriously all allegations of student harm,” a spokesperson said. “These allegations are deeply disturbing, and we are fully committed to holding accountable any adult whose actions could have endangered a student.”

The lawsuit comes as the school district grapples with several other lawsuits filed by parents, including one who accused teachers of bullying a fourth-grade special needs student relentlessly before he attempted suicide earlier this year.

Jamari Dent, 11, tried to hang himself in February after more than a year of chronic and violent bullying at the hands of students and staff members at two Chicago schools, according to a lawsuit filed in June. Dent, who attended Evers Elementary before transferring to Woodson Elementary, survived the Feb. 18 suicide attempt, but the incident left him with permanent brain damage and other life-threatening injuries.

The young boy’s mother, Tierra Black, said she begged teachers, school officials and the school district to protect her son, but her complaints were ignored.

The district said it launched “a full investigation” into Black’s “highly concerning” claims earlier this year.