People Creating Options: The Julie + Michael Tracy Family Foundation and Urban Autism Solutions

Be the change that you wish to see in the world – Mahatma Gandhi

Here at Autism College  we enjoy highlighting   people that  are working towards creating opportunities for those with autism. Here is a guest blog written by Michael Tracy, co-founder of the Julie + Michael Tracy Family Foundation (JMTF) and Urban Autism Solutions.  JMTF and Urban Solutions  exists to help address challenges  in regards to employment and housing that our young adults with autism face.

Julie and Michael Tracy

Julie and Michael Tracy

Julie and I are the parents of two sons, Joseph, 23, and John, 21. While Joe developed typically, John was diagnosed with Pervasive Developmental Disorder (Autism) in preschool. We tried hard to mainstream him, but John struggled socially. No amount of soccer or Boy Scouts or 4H seemed to help. It tore out hearts out to see him so isolated. In middle school, John developed schizoaffective disorder. By the time he reached his sophomore year in high school he had been hospitalized at least three times and we could see that a big change was needed.

In his sophomore year in high school, John was enrolled in the Sonia Shankman Orthogenic School, a residential, therapeutic school associated with the University of Chicago. In the spring of 2011 he had his most serious psychotic break and was hospitalized for five weeks at Rush Hospital on the Near West Side of Chicago. It was a pretty intense experience for John and our family. While Julie and I were very impressed with the care John was given at Rush, we learned of the need for more specific psychiatric and transitional care directed towards young adults with autism and comorbid mental health problems.

After John was released and back at the “O” School, we founded the Julie + Michael Tracy Family Foundation and Urban Autism Solutions to help address challenges facing young adults with autism. Learning that the vast majority of this population lives at home with their parents and often don’t hold jobs and/or have meaningful lives outside the home, we set out to work with Rush University Medical Center to establish the Autism Assessment Research and Treatment Service Center (AARTS) with the goal of working with young adults on the Spectrum to achieve better outcomes.

Urban Autism Solutions is currently the only organization dedicated to providing wrap around solutions and a path to a fully integrated community life. We plan to create a series of residences for young adults with autism on the near West Side of Chicago. We just purchased our first residence that will house three young adults with autism. The building is in close proximity to Rush, allowing easy access to the Rush AARTS Center. With public transportation, the city is a much more livable place for those like John who will probably never drive. The neighborhood is conducive to walking, as is close not only to Rush but also to the University of Illinois at Chicago, the restaurant district surrounding Taylor Street in Little Italy and the West Loop neighborhood to the north. In the midst of so many businesses and in the shadow of the downtown, we know there may be more opportunities for meaningful employment for John. Finally, an urban setting, due to its diverse populations, might allow for “quirky” young men to “fit in” better.

Another initiative of our foundation is to develop social enterprise businesses to provide vocational opportunities for young adults with autism, as well as returning vets and others who need workforce development. This past summer, we launched a pilot community vocational garden, housed in the Illinois Medical District, just west of Rush. Our goal was to learn about urban gardening, health and nutrition and to create a viable path to greater economic independence for this vulnerable population. In addition to harvesting an abundance of produce, all indications of our initial research and assessment of the first year success of this pilot program are very positive. We are busy planning a major expansion for Year Two and we are exploring selling our produce to an  institutional partner and at a local farmer’s market.

The long-term goal of the JMTF and Urban Autism Solutions is to provide a safe and supported passage to a fully integrated community life. Through our initiatives of residential housing, groundbreaking research, vocational opportunities and an alliance with the Rush AARTS Center, we know we are creating viable opportunities and solutions for young adults and families with autism. To find out more about our foundation, go to www.jmtf.org.

 

 

Hire Autistic People; Here’s Why

Margaret Heffernan, blogger for for INC. interviewed me about autism and employment and wrote this blog post. You can read the original post and comments here.

Jeremy is autistic. He is also very bright, observant, and, it now appears, synesthesiac: he sees people, ideas, and feelings in colors. At first, his mother Chantal was skeptical–“I’m not, she said pointedly, from California; I’m from New York!” But she appreciated that Jeremy was being (as always) totally honest in what he told her and, when he said he wanted to start painting, she took him seriously, and encouraged him.

“He’s painting his dreams,” she says, “and people will pay for that. So often, he does advocacy for the autism community. He sits on taskforces. He has tested curriculum to teach life skills. He does conferences. He writes articles, and blogs for the United Nations. And, most of the time, people expect him to do this for nothing–or for coverage of his expenses. He is grateful for the opportunities. But he has a life, and a living to earn too. So the fact that people will pay for his painting: I’m all for that.”

Chantal Sicile-Kira is a leading authority on adolescent and early-adult autism. She’s written five books on the subject, the latest of which Jeremy co-authored. A passionate advocate for the autism community, she is adamant that autistic adults can and will be valued employees.

“Lots of people are pushed into academic qualifications and that’s fine,” she says. “But then the system breaks down after high school. It’s important for people on the autism spectrum to take an extra school year to learn life skills: self advocacy, relationships, organization. If they can do this, they can become employable. It’s utterly wrong that they should end up pushing shopping carts when, a year earlier they were getting high grades.”

As Jeremy writes in his blog, while “unemployment rates are frankly high for people in general, studies in the U.S. show it is greatly higher for those with autism. For example, the organization Easter Seals reported in a 2008 study that 22% of people with autism over the age of 16 have a paying job, compared to 75% of people who don’t have autism. This truth is that our differences make it difficult for employers, employment agencies, and job coaches to realize our capabilities and to offer specific recommendations based on our shared label. Belief in the ability of each person is necessary because judging us by neurotypical (ie “normal”) standards is not a real measure of our capacity for learning and being able to earn a living.”

The imminent arrival in the United States of Specialisterne has prompted a fresh debate about how to employ autistic talent. The Danish firm has pioneered finding meaningful roles for autistic people in Europe and now founder Thorkil Sonne hopes to do the same in America.

“It makes perfect sense,” says Sicile-Kira. “There are so many things that autistic people can do–and do well. For example, anything very repetitious and detail-oriented, work that requires great visual memory for the spotting of anomalies. You might not often think of someone with autism in terms of communication but they can be fantastic at understanding rules-bound communication, where it matters exactly what can and can’t be said to whom. Autistic people are very loyal, fastidious, and reliable. They are not going to come in late because they had too many tequila shots the night before.”

What’s key, she says, is to find (or to become) trusted intermediaries. That isn’t something that is unique to the autism community; after all, she says, she has a book keeper for her accounts. Jeremy is a wonderful painter but he needs someone to help with marketing; most actors have agents. What’s the difference?

I’ve known Chantal for a long time and have always been in awe of her astonishing energy and imagination. She’s proved a brilliant champion for the autistic community and never more so than now, when the first large generation of children, diagnosed correctly with autism, is about to graduate high school. She challenges all of us to think differently about who we might employ and how.

“It will be an economic failure if the new wave of high school graduates can’t be employed. All these kids have talent and ability and a tremendous capacity to contribute. We have to stop thinking that all employees have to be the same, with the same skills, the same attributes.”

Together We Can Create the Future We Want to See

We all know about the high rate of unemployment for people on the autism spectrum. Below is  a press release about a venture focused  on entrepreneurial solutions for adults with autism that is having it’s first session on Thursday, January 10th.

The Autism Entrepreneurs Center, run by LTO Ventures, is operating  in collaboration with the Achievement Vocational and Life Skills Academy, Grant-a-Gift Autism Foundation, Nevada Department of Employment, Training & Rehabilitation Bureau of Vocational Rehabilitation, and the University of Nevada Las Vegas Center for Autism Spectrum Disorders.

Autism Entrepreneurs Center to Help Adults with Autism Start Up and Operate Real Businesses in Nevada

First Venture in the U.S. Focused on Entrepreneurial Solutions for the 90 Percent Unemployment Rate for Adults with Autism

HENDERSON, Nev., January 7, 2013 – LTO Ventures today announced the opening of itsAutism Entrepreneurs Center, first and only venture in the U.S. specifically established to help adults with Autism Spectrum Disorder (ASD) start up and operate real for-profit businesses.  The first session of the Center will be held Thursday, January 10, 2013 from 2 to 4pm at the Autism Center of Southern Nevada, 72 N. Pecos Road, Suite C, Henderson, Nev.

LTO Ventures  is a 501(c)(3) non-profit company with headquarters inHenderson, Nev. that develops live/work/play communities for ASD adults.  LTO Ventures created the Autism Entrepreneurs Center to provide ASD adults the specific guidance, tools and resources they need to create, launch and operate their own real for-profit companies. LTO Ventures plans to pilot the program in Southern Nevada with the first-year goal of creating 12 new incorporated businesses and putting up to 100 ASD adults to work making minimum wage or better.

LTO Ventures also plans to create two related entities: 1) partnerships between ASD adults and typical adults to jointly launch and operate businesses; and, 2) a “business incubator” to encourage businesses created within the Center to share resources.

“Most vocational programs for ASD adults focus on convincing existing employers to hire them. We believe there are ASD adults who have great ideas and unique talents who would be more successful bringing their own ideas to fruition and working in settings created to foster their abilities,” said Mark L. Olson, President and CEO of LTO Ventures. “By giving ASD adults another choice for meaningful work, we are supporting self-determination in their employment outcome.”

“But like many typical individuals, ASD adults don’t know necessarily how or where to go to get started. Our Center proposes to pick up where job development support groups, short-term vocational training, and employment toolkits end, and provide the step-by-step guidance, tools and resources to create and operate real small businesses,” Olson said.

  •  Easter Seals published in 2011 the results of a study conducted in 2010 that found that only 11 percent of adults with disabilities work full-time, and only 32 percent have any kind of employment, compared to 48 percent of adults without disabilities working full-time and 74 percent working full-time, part-time, or self-employed.
  •  Easter Seals also reported that autism was the most prevalent disability — 62 percent of adults with disabilities in their study had some form of autism (Autism, Aspergers Syndrome, Pervasive Developmental Disability-Not Otherwise Specified, Rett’s Disorder)
  •  Autism Speaks, a leading advocacy organization for individuals with autism, in a 2012 Employment Think Tank, reported more than 500,000 children and teenagers with autism will reach adulthood in this decade and join the market for jobs, housing, and services.
  •  The California Senate Select Committee on Autism reported the average salary for those ASD adults who are employed is $4,824 annually.
  •  Unemployment in Nevada statewide is the highest in the U.S. at 10.8 percent for November 2012, the most recent reported month, and 10.4 percent in Las Vegas.

WHO SHOULD ATTEND:  ASD adults ages 18 and older, and their parents, family, caregivers and agency staff are invited to attend the Jan. 10 session. Anyone else interested in learning more about how to create businesses to employ ASD adults, or to help ASD adults start their own real businesses is encouraged to attend.  There is no cost for this session.

The Autism Entrepreneurs Center operates in collaboration with the Achievement Vocational and Life Skills Academy, Grant-a-Gift Autism Foundation, Nevada Department of Employment, Training & Rehabilitation Bureau of Vocational Rehabilitation, and the University of Nevada Las Vegas Center for Autism Spectrum Disorders.

Creating Opportunities for Youths with Autism: The Autistry Studios

The last few months I’ve been traveling for speaking engagements and everywhere parents and educators are concerned about the future of their student or child. Whether it’s New York, Texas, Florida, California, Ohio, New Jersey or Maryland, there is concern: What will our youths do to earn a living when they transition out of school, and how can we best prepare them?

Starting today, as we head into the New Year, I would like to highlight on a regular basis people and organizations that are creating innovative opportunities for our young students to learn skills they can then apply to getting a job or earning money. I’ll also highlight those who are creating successful job and career opportunities for those on the spectrum.

If you have a story you would like to share, please send it in. We can all learn from each other.

Today I’m highlighting The Autistry Studios founded in 2008 with 4 students  by Janet Lawson and Dan Swearingen, the parents of Ian. When I wrote about them in the Social Relationships chapter  in  A Full Life with Autism (published in March 2012), they had about thirty students and workshops such as  a Build Stuff, Film, and Theater workshop. Now they have over 40 students.  Their mission was to provide a place where teens and young adults could create social relationships and develop skills based on their interests that could potentially lead to employment. Now, Autistry Sutdios’ next phase is to launch Autistry Enterprises, a manufacturing company creating unique works designed and made by Autistry students.

They say a picture is worth a thousand words, so watch this well-done ABC7 special. The Autistry Studios was recently  featured in their Profiles of Excellence.

Fell free to comment below, and don’t forget to send us your story of innovation!

Autism and Employment: What are some barriers you or a loved one have encountered?

Do you have a story to share about yourself, or a loved one, or a student you know on the autism spectrum who is having a hard time finding or keeping a job?  What are the challenges to getting and  staying employed you have experienced?

My son, Jeremy, is writing a paper on the barriers to employment for someone with autism including Asperger’s Syndrome. He is looking for more personal stories to illustrate his paper.  Please, could you share your experience  by writing it in a comment to this blog?  You may stay anonymous if you wish.

In A Full Life with Autism, we wrote about employment among other topics and shared some practical and empowering advice from different sources.  Here, Jeremy is researching more about the barriers people have encountered.

Please leave your  stories, and pass this along to others who may have an experience to share.

Thank you for taking the time, and Jeremy will  write a blog here when the paper is finished.

Praise for A Full Life with Autism

Lars Perner, Ph.D., Chair, Panel of People on the Spectrum of Autism Advisors for the Autism Society of America, and Assistant Professor of Clinical Marketing, USC, had this to say about A Full Life with Autism:

Each individual on the spectrum is unique and will need personally tailored supports.  At the same time, because of autism’s complexities and seemingly contradictory characteristics, it is often difficult to get a view of the “big picture” of a life on the spectrum and the challenges that it presents.  In their very comprehensive—yet highly readable—book, Chantal and Jeremy succeed in addressing both of these concerns.

Although ample resources for addressing the diverse needs of individuals on the spectrum are presented, the case Jeremy illustrates the types of challenges, surprises, and opportunities  that may come up as an individual develops.  Chantal talks about initially not expecting Jeremy even to finish high school and subsequently being able to help him not just graduate but go on to college.  An especially intriguing issue discussed involved helping Jeremy understand that a girlfriend is not something that can just be “hired” in the way that one can secure aides and support workers—an issue that only the most clairvoyant parent might have anticipated. Although optimistic and filled with humor, the book clearly acknowledges challenges that this family faced and those that will likely be faced by others—including obstacles to finding long term housing opportunities and healing from traumatic events.

Although much of the writing is done by Chantal, Jeremy is a consistent, creative, and innovative contributor, talking candidly about his own experiences that have led to the lists of tips that he presents.  I especially love his observation that rights of disabled individuals “are founded on the Fourteenth Amendment of the Constitution.”  The book’s extensive list of issues that may come up will unquestionable leave many families much better prepared for handling the challenges that will come up over the years.

More Rave Reviews: A Full Life with Autism

Elaine Hall,  creator of the Miracle Project, author of Now I See the Moon, co-author of Seven Keys to Unlock Autism and  subject of the movie “AUTISM: The Musical” has this to say about A Full Life with Autism:

A Full Life with Autism provides parents of teens on the autistic spectrum understanding, guidance, hope, and resources to navigate the uncharted territory of adult living.  Thank you, Chantal and Jeremy Sicile-Kira for responding to questions that so many of us parents are aching to know.  Thank you for brilliantly weaving  the parent perspective with Jeremy’s internal dialogue.  Thank you, Jeremy  for bravely articulating what is really going on inside the mind/body of someone with autism. I will use your words as starting points in my discussions with my own son, Neal.

A Full Life with Autism reminds us that the true “experts” on autism are our children; and that we, the adults, must listen to their wants and desires, then find the resources to help them realize their dreams.  I will be recommending this book to everyone I know.

 

 

A Full Life with Autism: Comments by Dr. Cathy Pratt

Unfortunately, many adults on the autism experience high rates of unemployment or underemployment.  Some of our most gifted live in poverty and have few options in life.   Chantal and Jeremy have creatively worked to create an engaged life for Jeremy and his family.   This book provides very practical ideas for transition planning and provides a template that others can use as they support adults moving into adulthood.   I highly recommend this for any family or individual as they  prepare for transition planning.

 

Dr. Cathy Pratt, BCBA-D, Director- Indiana Resource Center for Autism, Indiana Institute on Disability and Community; Former President of the Autism Society of America

Review of A Full Life with Autism by Dr. Joshua Feder

This marvelous book lays out in plain and readable language the challenges of transition to adulthood for persons with autism and offers practical advice from the inside perspective of a mom and her adult son teamed as partners in the enterprise of helping him achieve a meaningful life.

It is inspirational, almost a parable, in its effect of drawing you into their story and teaching important principles, and yet it is also comprehensive in the executive task of helping us think about our values, goals and objectives in our mission to give a real life to our adults with autism and related challenges.

Perhaps one of the most important messages: behavior is a form of communication, and it is incumbent on the people around the person with autism to work to understand what that behavior is communicating without merely consigning it to a category of something to be gotten rid of.  Jeremy states: “I have oftentimes been the victim of ignorance.”  We must not be party to what Jeremy has suffered.  We need to be humble and helpful, persistently curious and ever respectful.  We cannot presume to know what we do not.  We must take the time to get to know the hopes and dreams of people whom we do not yet understand.

I was also intrigued by the undercurrent discussion of relationships that runs through the book in sections on friendship, sex, love, and support staff, as they all revolve around the quality and character of relationships.  How can we support, for the person and people around him, the development of more meaningful communication, relating, and problem-solving.  To the many thoughts already included I would add that it is often very helpful to support the person and caregivers by carving out regular reflective time to think through how things are going  – what is working, what isn’t, and what to do to try next to understand the situation better and try something different.

In all, this is a compelling, thoughtful, comprehensive and inspiring bible that belongs on the shelf of everyone who strives to help people with autism build a life in a complex world.

Joshua Feder MD, Director of Research of the Interdisciplinary Council on Developmental and Learning Disorders

Preparing Your Teen or Young Adult for Work in the Real World

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“Jeremy does not like jobs with physical activities but likes to work with ideas and be able to tell others what to do…. As the case manager, I see Jeremy’s strong assets like working data, communicating with people to purchase/buy/manage a business. He is able to do gross motor activities, but often finds fine motor activities difficult and frustrating. Jeremy needs more opportunities exploring jobs and finding out what he would do to have fun and earn money. These last two ideas are very important to Jeremy.”

The above was part of information given to us by one of Jerey’s favorite teachers during an Individualized Education Program (IEP) meeting a few years back.

Jeremy is older now, but like all parents my husband and I worry about what his future will look like. Jeremy is now 22 years old, and with the economic situation being what it is, we are doubly concerned about the financial aspects of Jeremy’s life as an adult. But as the saying goes, worry gets you nowhere – fast. Preparing, planning and creative thinking is a better alternative to wringing our hands.

When thinking about employment for your child or student on the spectrum, there are a few aspects that need to be focused on: the life skills he or she needs to learn; a clear understanding of what employers look for in an employee; the interests and strengths of the person on the spectrum; the usefulness of mentors; and the different employment structures currently available. In this post, I’ll be discussing necessary life skills and what employers look for.

Necessary Life Skills

In my book, Autism Life Skills : From Communication and Safety to Self-Esteem and More – 10 Essential Abilities Every Child Needs and Deserves to Learn, the ten skill areas covered are important for all aspects of life, whether at work, at school, at home, or in the community. Some of the skills such as self-regulation, independence, social relationships, and self-advocacy are important for getting and keeping a job. The topic of earning a living is the last chapter in my book, because being able to get and hold a job is really a culmination of all the life skills hopefully learned during the school -age years, whether a person is on or off the spectrum. For example, for someone to be accepted in a workplace, he must be able to control his emotional and sensory meltdowns. A certain amount of independence is needed at most jobs. Understanding that you should speak to your boss differently than you would to a colleague is important to know in most work situations. Self advocacy skills are necessary in order to request what you need to get the job done.

Life skills in general should be broken down and translated into IEP goals and objectives, especially during middle school, high school and transition years. Obviously, everyone is different and the skill level reached for each of these skills is different depending on the person, but every student needs to learn a minimum in order to live and work in the community.

What Employers Look for When Hiring

Too often, when looking for a job placement for a person on the spectrum, people take the approach of asking for handout, or a favor. We need to approach this differently. I took a look at the top 10 skills and attributes most employers look for as identified by the Bureau of Labor (Job Outlook, 2003) and I discovered that many of those attributes are attributes people on the spectrum have, yet rarely do we sell those attributes to prospective employers. Here’s the top ten of what employers look for: honesty and integrity; a strong work ethic; analytical skills; computer skills; teamwork; time management and organizational skills; communication skills (oral and written); flexibility; interpersonal skills; motivation / initiative.

Now, many of you reading this are probably focusing on the skills in this list your child or student does not have. Look at it again, and think about what attributes your child does have. For example, most people on the spectrum are honest to a fault – they are usually the ones in the store saying “yes” when a woman trying on a dress says “Does this make me look fat?” They are not the employees who will be caught with thier hands in the cash tills. That’s a positive point to sell. A strong work ethic applies to most of our guys – the ones who do not like a change in routine and are going to be there rain or shine. They will not be calling in sick because they had one too many martinis the night before, or leave early because they have an event to attend. Analytical skills are really ‘obsessive attention to detail,’ and many of our children have that. The child who likes to line up blocks and trains probably has good organizational skills. Teamwork and flexibility are difficult areas for many, but we should be teaching flexibility at school (there are ways of doing that), and teamwork can be handled by ensuring the person on the spectrum has one person on the team that he is in contact with for all needed information. Many of our children with Asperger’s are good communicators, and some have become journalists, speechwriters and professors.

The point is, when people are selling a product and/ or service, they market the positive attributes, not the negatives. And that’s precisely what we need to be doing with any prospective employee on the spectrum.

In my next post, I’ll discuss the interests and strengths of the person on the spectrum, and the usefulness of mentors.