News and Knowledge

In honor of all the women we know who speak out on behalf of those who may not have a voice, for their communities, their children and grandchildren, and their siblings, we proudly present these profiles of four women who are working hard to make sure that people with autism have every opportunity possible to grow and succeed throughout their lives.

Mimi and Alex

Margaret Rose Henry is Delaware’s first and only African-American female state senator. Having raised two sons as a divorced parent, she is proud to advocate for working families, women, children, and seniors. As she says, “I have to be the voice for those who do not have one or whose voices may not be heard as loud as mine since I have this platform.” Prior to first being elected to the Delaware General Assembly in 1994, Senator Henry spent her professional career working in a management capacity for a number of nonprofits, including Girls Inc., Ingleside Homes, YWCA, and the United Way of Delaware.

She plays an equally important role in her family, as mother to her children and “Mimi” to her grandchildren. When her grandson, Alex, was diagnosed with autism several years ago, Senator Henry saw his parents struggle to make sure he received appropriate services. That’s why she is happy to serve as chair of the Autism Education Task Force, which is working on legislation that will create an Interagency Committee and the Delaware Network for Excellence in Autism as well as update and expand the current law. “The biggest need facing people or children with autism in my opinion is the availability of resources and knowing where to find them. Also the lack of appropriate therapies and the lack of appropriate services, particularly for adults with autism is a challenge.”

She hopes to have “resources available to all families, to ensure there are jobs for people with autism, to ensure that our educational system has professionals in place that will be able to assist children on any end of the autism spectrum.”

Working on behalf of her grandson is not the only thing that motivates Senator Henry. “My daughter-in-law Diliana Henry is a working mother with two children, including Alex. She exudes strength and shows us every day how love and patience are so important. I have watched her advocate for our Alex with doctors and with the education system. I have watched the sacrifices the family has had to make to make sure the needs of Alex are met.”

Loud Hands

If Julia Bascom could sum up the work she has done, is doing and will do for the autism community in one word, that word would be “voice.” As an autistic woman, she works on several different fronts to give her community a voice in the larger society. A big part of that work is her role as the deputy executive director at the Autistic Self Advocacy Network (ASAN). ASAN is a national grassroots organization by and for autistic adults, focused on policy advocacy, leadership trainings for self-advocates, and the development of autistic cultural activities.

Soon after she began working for ASAN, she organized the Loud Hands Project, which produced Loud Hands: Autistic People, Speaking, an anthology of writings about autism, by people with autism. Bringing together the last 20 years of autistic history, culture, and writing, the book is something that the autism community “could turn to and use to bolster our resilience and pride.” She notes that she and her colleagues were “more successful than I had dared hope; the lessons I learned putting together that book are things I will carry with me for the rest of my life.”

She is grateful for the many voices that speak out on behalf of the community, recognizing the great work done by one group she particularly admires, “the incredible women over at the Autism Women’s Network — autistic women, girls, mothers, daughters, and everything in between — advocating specifically on issues affecting autistic women. They do fantastic work, and as an autistic woman, I’m glad they’re around.”

Acutely aware that people with autism are still struggling with basic civil rights and basic questions of safety, she hopes to take her community beyond the “square one” that includes too many experiences of abuse and neglect, a lack of respect for their rights and voices that are ignored. She does recognize that there are triumphs among the obstacles. “The Combating Autism Act, which we viewed as reactive and based upon out-of-date ideas about autism has been replaced with the Autism CARES legislation, reflecting, we hope, a broader policy trend towards a more progressive focus on empowerment and support. It’s just a start, but it’s the start of something big.”

“I hope to be able to give my community a little more safety, a little more recognition, a little more acceptance. I hope that in five years, we are leading more conversations, and our voices are being more widely heard.”

Far from Finished

When Shana Nichols, Ph.D., a clinical psychologist who has worked in the autism field for almost 20 years, talks about what she does and why she does it, the words practically quiver with excitement. An OAR-funded researcher, Dr. Nichols works primarily to understand “the experiences of females with autism spectrum disorder (ASD), including promoting improved detection of ASD in females and addressing unique needs, strengths, and difficulties in intervention.”

Five years ago, she opened the ASPIRE Center for Learning and Development in Melville, N.Y., an outpatient behavioral health clinic that provides a range of services for people with ASD. As she considered what ASPIRE has meant to her, she thought about what had happened during the week: “a girl was invited to her first birthday party; a young man began considering options for his first job; and a mother felt validated for the first time after being told that her daughter is on the spectrum. A clinician excitedly shared in a team meeting ‘I had the most amazing group last night’; a client asked to hold Raj [ASPIRE’s therapy cat] to help with his anxiety; a new research study was launched with collaborators in Canada; and a father called to say he was told that ‘this was where I could find help for my daughter.’”

She is immensely grateful for what she and her ASPIRE colleagues have accomplished, but she is far from finished. “Our goals for the next five years include development of a parent support and training program, expanding services into our new second location, building our new summer therapeutic camp, exploring the incredible relationship our clients build with animals, and launching our applied research center.” She is also collaborating with Brigid Rankowski, a “dynamic inspiring young woman” with ASD, on a book for teen girls with ASD to follow up her book, Girls Growing Up on the Autism Spectrum: What Parents and Professionals Should Know About the Pre-Teen and Teenage Years, which was published in 2008.

As she works with Rankowski, she recalls the inspiration that her friend and colleague, Liane Holliday Wiley, author of Pretending to Be Normal, has given her over the past few years. “Liane is a pioneer in the field, having written one of the first accounts of growing up with undiagnosed autism. She speaks out about issues of great importance to individuals on the spectrum such as mental health, personal safety, identity, and facing later adulthood. She shares her experiences and her heartbreaks, knowing that someone will be the better for it despite how hard it can be to open oneself up.”

Making Connections

Theresa Waddell is a very busy CPA in Northern Virginia, co-managing Waddell Group, the financial services firm that she and her husband established, while being an equally busy mother to three boys. Most people would say that’s enough.

Not Theresa Waddell. “I enjoy connecting with other parents and families, and solving problems in a collaborative process,” she says. And that’s what she’s been busy doing since two of her boys were diagnosed with autism. In 2006, she and her husband, Chris, organized screenings of Pixar/Dreamworks movies through Waddell Group, exclusively for families with special needs. The annual screenings are sensory friendly and include goodies and photo ops for the families. As a result of the Waddells’ idea, the Autism Society of America and AMC theaters have created a national partnership.

In 2010, she founded the Arlington Special Education PTA (SEPTA), which connects families whose children have a special educational need. From 35 original members in 2010, membership today numbers more than 500, serving more than 3,000 children with IEPs and 504s in Arlington County (Va.) schools, their parents and educators.

One of her role models, she notes, is long-time friend and OAR supporter, Linda Campanelli. “She is a leader in our school system, with the Special Education Advisory Committee and in her son’s last year in the system will be the president of the Special Education PTA. Among the many moms in our community who have worked to improve life for individuals with autism and the families who love them, she has been especially inspirational to me,” Waddell says.

The Waddells are also active OAR supporters. Both Theresa and Chris are part of the RUN FOR AUTISM team and their oldest son, Will, recently joined them. In 2009, the couple hosted the first annual Casino Party benefit for OAR, which draws many people from the Arlington autism community.

As her children have grown, Waddell, like many other parents of children with autism, is acutely aware of the needs her children will have when they are adults, noting the lack of support in virtually all arenas of adult life. Though much remains to be achieved, she was happy to see the passage of The Achieving a Better Life Experience Act of 2014 (ABLE). ABLE accounts allow people who qualify for Medicaid, SSI, and other benefits, to retain their eligibility and to have a savings account that they control.

Her boys may be growing up, but Waddell is not done advocating for them and others facing similar challenges yet. Her goals are to put her considerable talents and experience to work helping “connect teens and young adults with autism in the Metro DC area with employment and internship opportunities.”

These four women would be the first to admit that they are not alone in their accomplishments. For every success they have had on behalf of the autism community, there are many more women out there working to ensure that people with autism have access to services and support and helping them lead independent and successful adult lives. That’s why we at OAR will be taking a moment on May 10 to salute all those powerful and energetic women who speak up on behalf of the autism community and serve the needs of children and adults with autism so constantly and well.