Nemeh Al-Sarraj doesn’t shy away from sharing her story. She is a dedicated advocate for disability justice whose mind never strays far from the issue closest to her heart — autism awareness. She is candid about her diagnosis, conversational about her journey.
But the sincerity that Al-Sarraj practices was once secrecy and shame. “For a while, we decided to hide my diagnosis. We actually did not want to share with anyone that I had a disability,” she says.
Although two of her brothers had been diagnosed with autism years before, their mother was shaken when a specialist informed the family that Al-Sarraj is also on the spectrum. The first words out of Al-Sarraj’s mother’s mouth were: “But she’s a girl.”
She was well-versed in her sons’ characteristics. Even so, as Al-Sarraj explains, her mother grew up “in the America that said that autism is a male disorder.”
The attention that autism received in popular media and medical research fixated on boys. Stories of girls on the spectrum were left unspoken. Women with disabilities continue to confront a double stigma — even in their own families.For Al-Sarraj, her diagnosis came with a sigh of relief. “It was like: oh, finally. Everything makes sense.”
As a child, Al-Sarraj had struggled socially. “I had gained a bad reputation — not because I was a poor student, but because I was a difficult person to understand,” she remembers. She also did not easily understand others, misreading signals and behaving incongruently.
“I wanted friends, but I couldn’t really relate to my peers,” says Al-Sarraj. “I knew there was something different about me.”
In pursuit of an explanation, her mother brought Al-Sarraj from specialist to specialist. It took nearly two decades and one exceptionally thorough assessment before they were told that autism was the answer.
“It was a 24-hour process of interviews and questionnaires,” remembers Al-Sarraj. “They got information from all my doctors and all my teachers.”
Those who receive less comprehensive, more superficial assessments may remain undiagnosed. In addition, Al-Sarraj explains, “people only know what autism looks like in its classic form, in its severe form.”
Even doctors overlook cases without apparent mental disability, and many reach adulthood before learning that they are on the spectrum.
It was this misinformation and misunderstanding that pushed Al-Sarraj to pursue a bachelor’s degree in disability studies and promote autism awareness.
“I want my brother to have a better childhood than I had. I want him to have the best life,” Al-Sarraj says. She works full-time caring for him, acting as his Personal Care Assistant (PCA) in addition to providing around-the-clock support as his sister.
But there was more — “the work that I was doing was also about me,” says Al-Sarraj. “After doing years of presentations and events, I was like, people have to know that I have a disability too.”
Al-Sarraj had been introducing her audiences to different types of autism, demystifying the diagnosis and denying the stereotypes that surround it. She saw that there was a gap still to be filled — the same gap that elicited her mother’s surprise about Al-Sarraj’s diagnosis.
“What was missing was the stories of people with disabilities, especially women with autism,” she explains.
Al-Sarraj decided that she would challenge these narratives and start changing attitudes about disability. And that she would do so by sharing her story.
“I can’t imagine all the people who go through what I went through — who were told that they were stupid, that they would not make it. Even though I make sure to say that each person is different, people need to hear the stories of someone who actually lives with a disability.”
It wasn’t easy. “When you are bullied in school, when your teachers don’t understand you, when your doctors think that your symptoms are in your head, you become afraid. I was afraid that if I told people that I have a diagnosis, they would laugh at me and make fun of me,” she says.
Now Al-Sarraj presents to professionals who interact frequently with people with disabilities in their work, such as social workers, psychologists, and teachers. She has presented at numerous conferences, including those by Education Minnesota and the Minnesota Social Services Association. She is a winner of the Changing Attitudes award given by The Arc Minnesota.
“We have been taught that disability is inability and that there is nothing beyond a diagnosis.”
She has big dreams for her community — a wheelchair-accessible park and an elevator in every building; Muslim women represented in fields such as psychology and social work; theology classes accessible for those with disabilities.
Al-Sarraj also takes time to share her story with parents who have been steeped in the same misconceptions that her own mother once held.
In fact, her mother is an example of how such beliefs can evolve. In seeing and supporting her daughter’s activism, her understanding of autism has expanded.
Al-Sarraj believes that the work of changing attitudes begins within the family.
“When you want to make a statewide or a nationwide change, you have to start small,” says Al-Sarraj. “That’s what I am hoping — that in my future, and even beyond my future, things will get bigger and better.”
Nemeh Al-Sarraj (she/her) is a graduate of Metropolitan State University. She completed a bachelor’s degree in Human Services in Disability Studies. This article originally appeared on the Sheroes section of our content partner Reviving Sisterhood