WoPo article about mothers finding out they are autistic

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09 Jun 2019, 12:42 am

‘I understand exactly who he is’: Moms discover they share autism with their children

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Maria Mercado always knew she was different. Growing up in a boisterous Puerto Rican family in the Bronx, Mercado rarely spoke unless challenged or angry. To the outside world, she came across as a smart but shy girl, who learned to read at age 4 and couldn’t keep eye contact. For most of her school years, she had little trouble with academics — despite a severe stutter and constant daydreaming — but struggled in social settings.

Even into adulthood, Mercado sometimes had a hard time verbalizing her thoughts. “Can I say this?” she asked herself. Yet only she appeared to be aware of the problem. She just didn’t understand why.

The answer came in 2009 when Mercado was 28. Her son, Jackson, who was then 13 months old, began to regress in his development.

Abruptly, Jackson no longer seemed attuned to his surroundings. He stopped saying “mama” and “dada” and responding to his name when called. Five months later, following a 40-minute home interview with a psychologist and a speech therapist, Jackson was diagnosed with pervasive developmental disorders, now known as autism spectrum disorder.

At first, Mercado felt overwhelmed. But when she laid out flashcards and watched Jackson successfully match the words with the corresponding pictures, she knew “he was in there,” as she puts it, just the same as she had always been.

The reason Mercado is so mindful of Jackson’s special needs is because hers were never addressed.

When Jennifer Malia took her 2-year-old daughter to the family practitioner and to a developmental pediatrician for consultation, they wrote off the child’s communication issues as a language disorder. Her daughter wasn’t on the autism spectrum because she was able to keep eye contact, Malia was told.

But Malia wasn’t convinced. She had witnessed the 45-minute emotional meltdowns during which her daughter would go from angry to nonverbal. She knew it because she had experienced such episodes herself.

So after hours of research, Malia, an author and associate professor of English at Norfolk State University, concluded that she was also on the autism spectrum and, at 39, received a diagnosis on the same day as her daughter. A year later, her son was also diagnosed, following a 10-minute evaluation with a clinical psychologist and formal testing.

“It was really frustrating because my daughter didn’t have the stereotypical autism traits,” Malia said. “If I hadn’t pushed for that, we would have never been diagnosed.”

Missing that critical intervention may have lasting effects on women, including depression and anxiety caused by a persistent feeling of failure. But a diagnosis, even later in life, means being part of a community and having access to a much-needed support network. For some, it even means finding a mission.

Dena Gassner, 60, used to blame herself for forgetting to buy tickets for her daughter’s Halloween party or for her inability to manage daily chores, such as being on time for church every week or doing laundry. (“The way I describe it is: I can do what you’re doing but I’m wearing an 80 pound backpack,” Gassner said.)

Everything changed when her 4-year-old son, Patrick, was diagnosed — and that prompted her own discovery at 38. Gassner immersed herself in the autism community and started attending conferences and reading biographies by other women on the spectrum, such as Valerie Paradiz’s “Elijah’s Cup” and Liane Holliday Willey’s “Pretending to Be Normal.”

Following three decades of self-doubt and 15 different medications for clinical depression and bipolar disorder, she found her own way both as a parent and a professional — Gassner is a PhD candidate in social work at Adelphi University and a board member of The Arc, an organization serving people with intellectual and developmental disabilities.

“Getting my own diagnosis has helped me liberate from the social pressures and enabled me to help my son become his own personal best,” Gassner said. “The journey was necessary, and now I can look back and say ‘thank God,’ because his autism has resulted in me finding out my identity.”


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“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


Mona Pereth
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09 Jun 2019, 7:41 pm

Dena Gassner, mentioned in the above article, is one of the co-facilitators of the women's support group of the Aspergers and High Functioning Autism Association.


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Magna
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09 Jun 2019, 9:14 pm

Mona Pereth wrote:
Dena Gassner, mentioned in the above article, is one of the co-facilitators of the women's support group of the Aspergers and High Functioning Autism Association.


Very cool. I watched a few YouTube vids of her since you mentioned this. She seems great.

This one is short but there were many poignant things she said making it worth watching.



One such example: NT kids are often taught to be unique, to make their own way, be their own person, be an individual, to stand out, etc. However, ND kids are often discouraged from being unique and discouraged from being themselves. "In no other realm", as she says, would it be acceptable to quash a person's individuality as autistic people are often subjected to.