Autism Speaks Has Spoken

Simone Greggs is a single mother with two children: an 18-year-old girl just starting college, and a 13-year-old boy with autism. Like many of us, she is a fierce advocate for her children, and has done battle with the local school system to get her son placed in an appropriate educational situation. Luckily, she succeeded and her son, who might be considered “high functioning,” now attends a private school intended specifically for children with autism. In order for the student’s team members to meet and discuss issues, the school has a regularly scheduled half-day on Wednesday. Simone sees this as a very positive thing that ensures all members of her son’s team are on the same page.

So why am I writing about Simone Greggs? What makes her different from thousands of other special-needs mothers? Unlike any of the rest of us, Simone is suing Autism Speaks, the most prominent autism-related not-for-profit organization in the United States, for violating the Civil Rights Act and the Americans with Disabilities Act by rescinding a job offer — because she asked for a minor accommodation to care for her autistic son.

As an African-American woman, Simone is all too painfully aware of the gap minorities face in autism services. Minority children with autism are typically diagnosed later and often get fewer services than their Caucasian counterparts. In an effort to change this situation, she has created a foundation, All the Love, to promote autism awareness and early detection among minorities, particularly in the African-American community. She’s just getting started, but this is a cause she is dedicated to.

Like so many others in this economy, Simone is looking for work. Her most recent job was with the Robert F. Kennedy Center for Justice and Human Rights as a Special Program and Events Manager. Despite glowing references, she was laid off January 2011. I met Simone at the IACC meeting in Washington where she was working with Claudia Stepke, the PR person for the Canary Party. She was responsible for coordinating details with the hotel for the Canary Party press conference scheduled for the committee’s lunch hour. I saw her in action, and I have to say I was impressed. She struck me as a no-nonsense person who knew her stuff and got things done.

Simone really felt at home at the Robert F. Kennedy Center. She liked the kind of work they did, and felt that she was helping to make a difference. With that in mind, in March 2012, she applied for a position at Autism Speaks as an Events-Walk Manager. The responsibilities were to include things she had done — and done well — in the past, including getting sponsors for the walks and running the walks themselves. It seemed a perfect fit, and it seemed that the management at Autism Speaks agreed.

The Director of Talent Acquisition, Pat DeSaules called her for an interview. Then she had a phone interview with the Executive Director of the Washington, DC office, Ann Gibbons, then met with Ms. Gibbons in person, along with the Regional Director and the Director of Special Events. After a total of five interviews, Pat DeSaules called Simone and said Autism Speaks would be offering her a position contingent on her passing the in-depth background check, which would take three weeks. She passed the background check and was told that her references were amazing. They sent her a packet of paperwork to complete and return before her start date.

The position was billed as a nine-to-five job when Ms. Greggs applied, but it soon became clear that there would be a significant amount of travel involved, plus occasional weekends. The norm for a position of this type is a certain amount of flexibility for the “regular” work hours when you’re doing a considerable amount of work outside those hours. It’s not good to assume that flexibility, though, and Simone didn’t. She asked questions about how it would work. Like any mom with a special-needs child, she would feel more comfortable being with her son on his afternoons off, if at all possible. She brought up the subject, but didn’t get a reply. Not wanting to leave the situation unresolved, she sent an email to Ms. Gibbons the day before she was to start proposing a schedule for Wednesdays that would have her coming in early and leaving early, and asked if they could discuss it at the meeting scheduled for the following morning. She even offered to take a pay cut in exchange for the peace of mind this arrangement would bring.

Ms. Gibbons responded by suggesting they put off her start date till the next week, until Simone could work out her day care issues. Ms. Gibbons explained that they couldn’t give accommodations, at least until after the six-month probationary period. Simone immediately called her mother, who was able to reschedule her regular Wednesday meetings to Tuesday in order to be with her grandson on Wednesday afternoons. Simone emailed again that she had worked it out with her mother, and she would not be needing any accommodations for Wednesday afternoons. The response from the Ms. Gibbons was positive and upbeat, but still held to the postponed start date.

The next day Simone got a call from Autism Speaks. There were five people on the line, including Gibbons, DeSaules, and Human Resources Manager, Linda LePage. The call sounds like something of an ambush to me – along the lines of something the “mean girls” in a junior high clique would pull. They claimed that Simone had sent an email making demands, didn’t get her paperwork in on time, and that she had changed the start date. After having her time tied up for nearly two months in the hiring process, and turning down an offer of contract work (from a subcontractor for the Democratic National Committee) because she already had the offer from Autism Speaks of a job with benefits, Autism Speaks told her they had decided to rescind the offer - on the day she was supposed to start work.

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After all the time spent interviewing, doing a background check, getting references, doing the credit check, you’d thinkAutism Speaks would have had a pretty good idea of what they were getting. What changed on that last day? A request for a little flexibility in the schedule in order to deal with a special situation. And, despite the fact that they were going to be requiring significant flexibility on Simone’s part, they rescinded the offer of employment just because she asked for a little flexibility in return. (I can’t help picturing the scene in “Oliver!” when Oliver dares to ask for more gruel and everyone is horrified to the point of kicking him out of the orphanage.)

This case is indicative of a real problem in the current U.S. corporate culture. The lack of flexibility in scheduling, and the fact that work schedules don’t resemble school schedules in any way, means that many, many parents — especially women — don’t feel comfortable getting full-time jobs that would better support their families. It means that the corporate world is missing out on those parents’ talents in a big way. It means that a great deal of training and knowledge can be lost when people become parents. And think of the skills that you pick up as a parent, especially if your child has special needs. Isn’t it likely that some employer could use those skills? Or, alternatively, if parents really need or want their jobs, it means that many parents have to sacrifice the good of their families for their jobs, and that many children grow up without really knowing their parents at all. Neither of these scenarios is good for this country.

A University of Minnesota study recently found that flexible workplaces are not only conducive to employee health (think how much more easily you would breathe if you could schedule your work hours for when they made the most sense), but also to measurable productivity. The study was conducted at Best Buy headquarters. The employees were directed to focus on results and could change when and where they did their work to meet their own needs. Shockingly enough (really; this isn’t rocket science.), work/family conflicts were reduced, which improved quality of sleep, energy levels and emotional and psychological health. Employees getting an extra hour of sleep on work nights are, of course, more productive. (Again, not rocket science.) It follows logically that happier employees are more likely to be loyal employees too. All big wins for the employer.

A report from the Alfred P. Sloan Foundation and the Ford Foundation found that “workplace flexibility programs benefit employers of all sizes and industries resulting in increased employee job satisfaction, lower turnover and lower insurance costs.” Much as employers like to pretend that employees are interchangeable automatons that work just as well under all conditions, they are not. Treating people as if they are robots just doesn’t make any sense for the employee or the employer.

As the number of special-needs children in this country escalates rapidly, this issue is only going to get bigger and bigger as time goes on. Corporations are going to be losing out on more and more talent, and employees are going to be more and more unhappy unless we consciously work to change this by increasing work flexibility in companies everywhere. If there is one organization that ought to understand this, it should be Autism Speaks - an organization dedicated to the “awareness” of a very common and frequently debilitating disability, currently most prevalent in children. Whether or not a court finds Autism Speaks to be guilty of discrimination on the basis of Simone Gregg’s son’s disability, it’s hard to see how this whole case does not constitute an “epic fail” on the part of the management at Autism Speaks.

~ Professor

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A Diverse Village

The old African proverb “it takes a village to raise a child” appears to be truer now than ever before. With the 1 in 88 autism statistic already outdated, and the autism community clearly growing in size and stature, children today need a wide variety of supports and services in order to thrive and function to the best of their abilities. Yet when you talk with the parents of children with autism, you discover that many of these children are not able to access the resources they desperately need.

There is power in numbers and there is power in unity.” -Dr. Martin Luther King, Jr.

With the 1 in 88 statistic, and with most of us knowing that the numbers are in fact far worse for younger cohorts, it would seem that the autism community should wield a great deal of power and influence. Yet we have very little power right now. Vaccines containing toxins and hazardous ingredients are still given to children by the dozen. The cost of organic, whole foods – the backbone of good health — is out of reach for many parents in our struggling economy today. Most of our pediatricians admit to not knowing what to do to help a child with autism, leaving parents to research treatments and therapies. Most parents discover that the most successful treatments and therapies are not covered by their health insurance, which in turn leaves many parents with mounting medical bills that threaten, if not annihilate, their financial security (if they even had financial security to begin with).

About a year before I got pregnant with my daughter, I attended a professional conference for which Carol Gilligan, author of In A Different Voice, was a keynote speaker. She noted that her latest research revealed that our society no longer had a collective voice or sense of common purpose. She continued that without a collective voice and action toward a shared cause, very little change could be made. Today, living the exhausting, hopeful, frustrating and blissful life of an autism mother, Carol Gilligan’s fears frighten me. Lack of change leaves an overwhelming sense of foreboding for the futures of children yet to be born. Arguably it could threaten the very existence of our society. Despite the bleak outlook of this fear, I am hopeful that the autism community will soon find its collective voice, its power in numbers and its power in unity to ultimately prevail in achieving access to all of the various things our children need to heal and thrive in life.

 

“This is our hope. This is the faith that I go back to the South with. With this faith we will be able to hew out of the mountain of despair a stone of hope. With this faith we will be able to transform the jangling discords of our nation into a beautiful symphony of brotherhood. With this faith we will be able to work together, to pray together, to struggle together, to go to jail together, to stand up for freedom together, knowing that we will be free one day.” Dr. Martin Luther King, Jr. “I Have a Dream” Speech at the Civil Rights March on Washington, D.C. 08/28/1963

 

I have never met better people or friends than I have in the autism community. Passionate, loving, resourceful, hopeful, intelligent, determined and unwavering in their efforts to heal their children, the autism parent is a formidable force of nature. One can only imagine what could be accomplished if all autism parents came together for the greater good of all children. Seriously. Take a moment and just imagine.

So, what is it that gets in our way? There is diversity in our community that is not fully embraced by everyone. In order to truly effect meaningful change, we need to find a way to support a whole community while still allowing room for individual differences. ABA is not better than Son-Rise or FloorTime. GAPS is not better than LOD or SCD. Speech therapy is not better than occupational therapy. DAN is not better than homeopathy. HBOT is not better than MB12. GcMAF is not better than AC Chelation. All of these treatments (and more!) exist and offer hope and healing to many children. There is no one treatment that will work for every child (save for unconditional love and the steadfast belief in your child’s limitless potential — that one works for every kid and it’s free!).

I have witnessed a great deal of criticism of parents by parents. “I can’t believe s/he spent the money on that!” “What are they thinking going that route? I’d never do that!” To be sure, everyone is entitled to an opinion. But when opinions begin to splinter an already marginalized community, there is little good that can come from sharing them. There is little good that can come from criticizing the efforts parents make to heal their children. Almost everyone I have ever met in my life has said, “no one knows a child better than that child’s parent.” Let’s all do more to honor that!

The bottom line is that we all want a better life for our children, and there are many different ideas as to what that better life looks like. There are many different paths to that better life. Some people (if not all) want better health. Some people want better supports. Some people want better therapies. Some people want access to alternative therapies. Some people want better services. Some people want better choices all around. All of us want acceptance and support as we move forward in the journey of healing our children, regardless of how different or similar our paths may be.

This is our shared cause: a better life for our children. Let’s work hard to remember that and come together to offer support coupled with meaningful action for our community as a whole, while working hard to allow that important space for individual differences. There is power in numbers and there is power in unity. Let’s come together now! We can do this! We shall prevail!

Keep thinking!

~Money

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