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My Daughter and I Were Diagnosed With Autism on the Same Day

Though I didn’t know it at the time, my crying fits at home and in the hospital were autistic meltdowns. I would find out many months later that what I had experienced was a cycle of sporadic hemiplegic migraines, which can lead to a coma or, in rare cases, even death. I often wonder if I would have been treated differently by medical staff if I had had an autism spectrum disorder diagnosis then, or if I still would have been dismissed as an anxious woman who didn’t know how to manage her pain.

Research also suggests that undiagnosed autism has been harmful for women. In a 2016 study of 14 women, “many told us that the fact that their autism went unrecognized for so long had a very real and negative impact upon their mental health,” said Dr. William Mandy, D.Clin.Psy., Ph.D., an associate professor in clinical psychology at University College London. “A lack of a diagnosis means a lack of appropriately targeted support, which can place an autistic individual under huge stress.”

The published research on the experiences of autistic mothers is very limited. Two small qualitative studies in 2016 and 2017 consider pregnancy, childbirth and the postpartum period. The interviews of autistic mothers in these studies reveal challenges they had with sensory issues during breastfeeding and childbirth, and adapting to motherhood and infant care. Many said they felt unfairly judged by midwives and other caregivers on parenting skills and decisions.

Dr. Simon Baron-Cohen, Ph.D., a professor of developmental psychopathology and the director of the Autism Research Center at the University of Cambridge, and his colleagues have multiple studies underway to investigate the experience of autistic motherhood beyond the perinatal period. Presented at the 2016 International Meeting for Autism Research, their unpublished research involved an online survey of more than 300 autistic mothers. The study found the majority of them had extreme anxiety when talking to professionals about their children, encountered disbelief when they disclosed their diagnosis to professionals and struggled with daily parenting tasks.

“It should now be a routine requirement for autism researchers to collaborate with autistic people in every project,” Dr. Baron-Cohen said. “Without the input of autistic mothers, we would have missed key issues” — such as the fact that autistic mothers have increased rates of postnatal depression and have been falsely accused of Munchausen syndrome by proxy on the assumption that they were making up their children’s autism. He hopes this research will lead to more awareness of autistic motherhood experiences and the development of policy documents to improve the “woefully inadequate” services available for autistic mothers.

“Many autistic women are highly attuned to their children,” said Lana Grant, author of “From Here to Maternity: Pregnancy and Motherhood on the Autism Spectrum,” a book aimed at helping autistic mothers with the challenges of pregnancy and motherhood. “They may see their child struggling with the same things that they struggled with as a child. They read up on everything they can about a behavior or condition and then they go to the professionals for help.” Instead, they are seen as “too knowledgeable and hysterical,” Grant said, and dismissed as trying to tell professionals how to do their job.

She was already the mother of five of her six children (three of whom are on the autism spectrum) when she got her autism diagnosis at 38. “Autistic mothers are their own worst critics,” Grant said. She recommends that autistic mothers find a support network of other mothers on the spectrum, including those who are “out and proud” on social media, like her.

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