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 Simone for an interview. Simone then had a phone interview with the executive director of the Washington, D.C., 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. Autism Speaks 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 tying up Simone’s time for nearly two months in the hiring process, leading her to turn 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 think Autism 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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6 Responses to Autism Speaks Has Spoken

  1. Jan Martin says:

    Love David’s Daddys response. So very true! I wish people could see what a snow job Autism sneaks is. An organization that is supposed to help families with autism, can’t accommodate one schedule request for a woman whose son has Autism, but expects mom to travel all over and work all kinds of hours. Shame on them. Shame on them for looting all those donations and putting them who knows where. I too understand the challenge of trying to care for an affected child and not being able to find a job that is flexible enough to allow me to work from home a few days a month. But from an agency supposed to be supportive of autism? Absurd!

  2. Blaze says:

    Autism Speaks will go down in history as having done as much to escalate the autism epidemic as any governmental or medical entity. This doesn’t surprise me a bit.

  3. Professor says:

    Thanks, Brian! I imagined that this story would hit minority and single mothers the hardest. It’s great to know that it made an impression on a married non-minority father! And I agree you are blessed to have a partner who can worth WITH you, and jobs that allow you flexibility.

  4. David's Daddy says:

    Just by coincidence(same coincidence that takes place with vaccination and autism, lol) a friend looking for a job sent me the link to an “Autism related” job posting. And of course it was these dirtbags.
    Here is my cover letter…
    “Let’s see where do I begin?
    Next to the vaccine schedule, Autism Sneaks is no doubt the greatest contributor to autism rates as you lie to the world about the true causes of autism. But it doesn’t end there. You also take the money from these poor ignorant people and use it to promote the insurance lobby agenda. You fund Allison “Yes I split the MMR up for MY kids, but I don’t care about your kid” Singer, and of course Dr. Pr-Offit who went from being a vaccine millionaire (chastised by Congress for “voting himself rich”) to suddenly becoming an autism expert.
    You now shill for State Medicaid in an effort to reduce their exposure to autism related services. In NY when you tried to blow up the most progressive insurance reform in the country we blocked you and you had to play ball with those actually concerned for the autism community.
    Lately you have been in the news for actually discriminating against a person for having a boy with autism. Disgusting!
    You are truly the worst charity in the world and whoever is reading this should go look a family torn apart by this man made epidemic and apologize for caring more about money than families with autism.
    And if you don’t understand how vaccines cause autism, you’re right. They don’t. They cause brain injuries and immune dysfunction that result in the symptoms of autism. The injuries include an ADEM, and a vaccine causes it.. FACT! In a study done by Pace University 150 kids who were awarded brain injury awards by the VICP were examined. 83 had autism symptoms caused by the vaccine induced injury.
    Included is a document from an organisation that ACTUALLY knows what they are doing. Maybe you can learn from them and stop this epidemic.
    Now look at the thousands that have suffered brain injuries. Do the math!
    You people claim to fund biomedical treatments and cures, yet I know first hand that you only look at funding Pharma.
    Here is a group on Facebook dedicated to telling the world what a bunch of scumbags you are.
    And please don’t forget to get your flu shots every year.
    David’s Daddy”

  5. Mom says:

    Perfect timing on this – I am applying for a job today – one that will work around my daughter’s kindergarten schedule (she is special needs). It is very true that even though I have a very strong background I feel I am forced to look for a part-time job instead of full-time due to my daughter. It’s not easy to get “before” or “after-school” care for a special needs, non-verbal child.

    I’m glad she’s suing them. I once had multiple interviews with a Catholic school to work as their grant writer. Once they found out I was married in the Lutheran Church (after the 3rd interview) they immediately stopped the process and told me I was not qualified. Up until that time there was no mention that this was a deal-breaker.

    I currently work for a hospital where there is no consideration if you are sick – another irony. They don’t care how sick you are – you better come to work.

  6. Brian Cea says:

    Thank you for sharing this story. My wife and I can only imagine the struggles minority and/or single mothers face when their child(ren) have autism. We are very blessed. Both in the fact that we fight this battle together and that our respective jobs allow flexibility. I cannot imagine how we would manage otherwise. I wish we could do more but will spread the story.

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