Creditvia Jen Malia
You convinced yourself that you and our daughter have autism, my husband yelled. You did all this research and told the doctor what he needed to hear to diagnose you!
No, it wasnt like that, I said. You know about all the testing we went through.
I cant believe you brought her into this, he said. Youre like those mothers who make up medical problems about their kids. Why cant you just let her be a kid?
Shes still the same girl she was before she got diagnosed, I said, tears dripping down my face. And Im still the same woman you married, too.
I knew then that if I couldnt persuade my husband of five years to accept my daughters autism and my own, it would ruin our marriage and tear our family apart. Autism wasnt just a medical diagnosis; it was part of our identities. To reject our autism was to reject us.
Doctors originally told me my daughter had just a language delay. But I knew this couldnt explain the intensity of her emotional meltdowns. It took me hundreds of hours of medical research to understand that her difficulty socializing, repetitive routines, sensory issues and obsessive interests pointed to autism. I eventually realized that not only was she autistic I was, too. A clinical psychologist diagnosed me and my daughter with autism spectrum disorder on the same day; she was 2 and I was 39.
Do you think theres something wrong with everyone in our family? my husband asked a year later, when our then 2-year-old son was also diagnosed with autism spectrum disorder. As an autistic mother, I wasnt surprised to learn that I had another child on the spectrum. A 2014 study found that parents of autistic children are more likely to have elevated levels of autistic traits, whether or not these traits are enough to qualify for a clinical diagnosis of autism spectrum disorder.
[Learn about sensory processing disorder and how it affects kids.]
In the study, when one parent scored high on a test that measures presence and severity of autistic traits (the SRS, or Social Responsiveness Scale), they were 52 percent more likely to have a diagnosed autistic child; when both parents scored high, they were 85 percent more likely to have one. Published earlier this year, the largest study ever conducted regarding genetic contributions to autism also found that inherited genes account for about 80 percent of autism risk.
But how was I supposed to parent our autistic children if my husband didnt even think they were autistic and doubted my diagnosis too? It is not unusual for family members and others who know autistic women to have trouble accepting their autism diagnosis.
Doctors, teachers and most people have a male stereotype of autism in mind; when they think of autism, they think of Rain Man, not of a woman or girl, said Dr. Francesca Happ, Ph.D., a professor of cognitive neuroscience at Kings College London. For women who are married with children, this goes against several stereotypes people may hold about autism: male, single, few close relationships, no children.
The diagnostic criteria and assessment tools were developed primarily based on how autism presents in males, which means women can often be overlooked for an autism spectrum disorder diagnosis, depriving them of an understanding of themselves as different, not damaged, said Dr. Lauren Kenworthy, Ph.D., a professor of neurology, pediatrics and psychiatry at the George Washington University School of Medicine and the director of the Center for Autism Spectrum Disorders at Childrens National Hospital.
Sunyi Dean of Leeds, England, a mother of a 4-year-old nonverbal autistic son and a 7-year-old daughter who is on the waiting list for autism spectrum disorder diagnostic testing with the National Health Service, said that she worried about how her son will relate to other people if he doesnt learn verbal communication, but at the moment he is happy in himself and settled into his special school.
With her home-schooled daughter, Dean said she was mostly ignored by professionals and other parents when she first raised concerns about autism, and now that shes being taken more seriously, the process has been very difficult and slow.
As an autistic mother who was diagnosed after her son was, the biggest challenge for Dean has been finding time for self-care. I always thought I wouldnt mind the demands of parenthood because Im not hugely social and dont need to go out much, Dean said. But I still need a lot of personal space, a lot of downtime to recover on my own, and thats difficult to get with kids around.
By the time I was diagnosed with autism, I was so overwhelmed by the responsibilities of working full time as an English professor while parenting three young children (a 1-year-old son and 2- and 3-year-old daughters) that I could barely keep it together.
The year before my diagnosis, the stress of being an undiagnosed autistic mother nearly cost me my life. I spent two weeks in and out of the E.R. complaining of stroke-like symptoms while battling uncontrollable crying fits brought on by my desperate attempts to get medical treatment. You need to learn to manage your pain. The E.R. is only for patients who actually have emergencies, a nurse said while handing me my discharge papers.
Though I didnt 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 didnt 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 childrens 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.
A few years after my diagnosis, my husband came to accept my own and our childrens autism. I stopped lecturing him, realizing that he would eventually understand our differences on his own terms. He started going to therapy appointments with our children. Then last year, at our kids Taekwondo class, I told the father of another child that we are autistic. I know, he said. Your husband told me last time he was here.
My husband now respects my parenting decisions, knowing that I can help our children by drawing on my own experiences living with autism. He is the supportive husband whom I married and a loving father who accepts our kids differences.
While the limitations of my autism sometimes make it difficult for me to handle the demands of parenting three young kids, I am now more willing to seek help from support groups and therapists. Learning to understand and accept my own and my kids autism was the best thing that ever happened to me because it empowered me to be a better mom.
[The right school can make all the difference for a child with disabilities, one mom writes.]
Jen Malia is associate professor of English at Norfolk State University and the author of the forthcoming childrens picture book Too Sticky! Sensory Issues With Autism.
Go here to read the rest:
- Medical genetics - Wikipedia - January 10th, 2020
- Genetic Medicine | Department of Medicine - January 10th, 2020
- Distribution of Genes Encoding Virulence Factors and the Genetic Diver | IDR - Dove Medical Press - January 10th, 2020
- In defence of imprecise medicine: the benefits of routine treatments for common diseases - The Conversation UK - January 10th, 2020
- IDEAYA Biosciences and Boston Children's Hospital Collaborate on Preclinical Evaluation of IDE196 for Sturge Weber Syndrome - a Rare Disease... - January 10th, 2020
- Study ties gene active in developing brain to autism - Spectrum - January 10th, 2020
- Faculty and alumni appointed to state medical boards - The South End - January 10th, 2020
- Why This Thematic Healthcare Could be a January Winner - ETF Trends - January 10th, 2020
- New year health kicks are great but your environment is also vital - The Guardian - January 10th, 2020
- Biofidelity and Agilent complete successful molecular assay study for rapid and accurate detection of key lung cancer mutations - BioSpace - January 10th, 2020
- New MD Treatments the Main Goal of Astellas, Audentes Merger - Muscular Dystrophy News - January 10th, 2020
- Physicians' Education Resource Presents the 2nd Annual Precision Medicine Symposium in New York City - BioSpace - January 10th, 2020
- A Genetic Mutation Is Responsible for Mysterious Deaths in the Amish Community, Researchers Say - Gizmodo - January 10th, 2020
- Kyoto Univ.-distributed iPS cells found with abnormalities after differentiation - The Mainichi - January 10th, 2020
- The Importance of Understanding TargetProtein Interactions in Drug Discovery - Technology Networks - January 10th, 2020
- Webinar: How Providers are Harnessing the Power of Genomics to Improve Community Health - ModernHealthcare.com - January 5th, 2020
- Genomics and Medicine | NHGRI - January 5th, 2020
- These 2 Stocks Will Fall After the New Year - Motley Fool - January 5th, 2020
- Free Gene Therapy Available for Patients with Alzheimer's - HealthITAnalytics.com - January 5th, 2020
- Chinese Researcher Who Created Gene-Edited Babies Sentenced To 3 Years In Prison - NPR - January 5th, 2020
- Duke Researchers Garner Over $6 Million in NIH Funding to Fight Genetic Diseases - Duke Today - January 5th, 2020
- Stanford Team Proposes Automated Clinical Trial Accrual Strategy, Increased Trial Annotation - Precision Oncology News - January 5th, 2020
- Dr. Timothy Eberlein and Alvin Siteman named Citizens of the Year 2019 - STLtoday.com - January 5th, 2020
- Did Cellectis Just Provide a Glimpse of the Future of Cellular Medicine? - The Motley Fool - December 27th, 2019
- Sickle Cell Therapy With CRISPR Gene Editing Shows Promise : Shots - Health News - NPR - December 27th, 2019
- Sarepta Therapeutics Announces Partnership with Roche in Territories Outside the United States for its Investigational Micro-dystrophin Gene Therapy... - December 27th, 2019
- What is multifocal pneumonia, the illness ESPN reporter Edward Aschoff tweeted about before his death? - USA TODAY - December 27th, 2019
- The travellers within us - Myanmar Times - December 27th, 2019
- This Start-up Might Be the Next Gene Editing IPO - The Motley Fool - December 19th, 2019
- How to bring precision medicine into the doctor's office - World Economic Forum - December 19th, 2019
- Form of severe malnutrition linked to DNA modification - Baylor College of Medicine News - December 19th, 2019
- 'Polygenic' profile could better predict disease risk for those with cancer mutations - Science Magazine - December 19th, 2019
- Here's Why You Should Avoid Betting on RPC (RES) Stock Now - Nasdaq - December 19th, 2019
- UNC Police Investigating Series of Credit Card Thefts on South Campus - Chapelboro.com - December 19th, 2019
- Personalized CF Medicine to be Tested for Rare Genetic Defects in Europe - Cystic Fibrosis News Today - December 19th, 2019
- Has Innovative Industrial Properties (IIPR) Outpaced Other Finance Stocks This Year? - Nasdaq - December 19th, 2019
- BioReference Laboratories Showcases 2019 Growth through the Addition of Cutting Edge Tests, Greater Access to Services, and Optimized Patient... - December 19th, 2019
- Gene Therapy Arrives - Scientific American - December 18th, 2019
- Detection of Secondary Metabolites as Biomarkers for the Early Diagnos | DMSO - Dove Medical Press - December 18th, 2019
- Roche concludes acquisition of Spark Therapeutics, Inc. to strengthen presence in gene therapy - GlobeNewswire - December 18th, 2019
- 10 Years Ago, DNA Tests Were The Future Of Medicine. Now Theyre A Social Network And A Data Privacy Mess. - BuzzFeed News - December 18th, 2019
- Mosaic Angelman Should Be in Differential Diagnosis of AS, Study Says - Angelman Syndrome News - December 18th, 2019
- Sarepta Therapeutics Announces $250 Million of Non-Dilutive Senior Secured Loan Financing - Yahoo Finance - December 18th, 2019
- Triplet Therapeutics Launches with $59 Million in Financing to Further its Development of Transformative Treatments for Triplet Repeat Disorders -... - December 18th, 2019
- Genetic clues of TB spread between cows and badgers revealed - Irish Times - December 18th, 2019
- The first U.S. trials in people put CRISPR to the test in 2019 - Science News - December 18th, 2019
- Care Coordination and Precision Medicine Improve Early Diagnoses - HealthPayerIntelligence.com - December 13th, 2019
- Penn Team Finds Genetic Variant Largely Found in Patients of African Descent that Increases Heart Failure Risk - Clinical OMICs News - December 13th, 2019
- For Nobel laureates, a whirlwind welcome - The Hub at Johns Hopkins - December 13th, 2019
- A Nobel journey a lifetime in the making - The Hub at Johns Hopkins - December 13th, 2019
- Teams of Microbes Are at Work in Our Bodies. Drexel Researchers Have Figured Out What They're up to. - DrexelNow - Drexel Now - December 13th, 2019
- 5 things a Nobel Prize winner wants you to know about science - Futurity: Research News - December 13th, 2019
- Aspen Neuroscience Launches With $6.5 Million Seed Funding to Advance First-of-its-Kind Personalized Cell Therapy for Parkinson's Disease - P&T... - December 13th, 2019
- Researchers unfold genetic code that controls cell function and disease - BSA bureau - December 13th, 2019
- Cannadabis: tissue culture and the future of cannabis cultivation - Health Europa - December 13th, 2019
- The genetic mutation behind a new autoinflammatory disease - Pursuit - December 13th, 2019
- 21st century medicine helps Amish deal with rare, inherited illnesses - University of Wisconsin-Madison - October 19th, 2019
- Research presented by Invitae at the American Society of Human Genetics Meeting Pushes Science and Practice of Genetics Forward - P&T Community - October 19th, 2019
- Genetic Tests For Psychiatric Drugs Now Covered By Some Insurers : Shots - Health News - NPR - October 19th, 2019
- How Artifical Intelligence Is Advancing Precision Medicine - Forbes - October 19th, 2019
- Ochsner Health System teaming up with Color on population health pilot - FierceHealthcare - October 19th, 2019
- Scientists at Wake Forest School of Medicine Identify Genetic Variation Linked to Severity of ALS - Newswise - October 19th, 2019
- 100 Health Summit: How to Make Research Better | Time.com - TIME - October 19th, 2019
- Genetic counselors save health care dollars when involved in the testing process | TheHill - The Hill - October 19th, 2019
- New Gene Therapy Approach Reduces Cost and Improves Efficiency - DocWire News - October 19th, 2019
- NIH funds new All of Us Research Program genome center to test advanced sequencing tools - National Institutes of Health - October 19th, 2019
- Gait and Aging; Statin Use in Kids: It's PodMed Double T! - MedPage Today - October 19th, 2019
- SIDS May Be Linked To A Genetic Inability To Digest Milk, Study Finds - Moms - October 19th, 2019
- Are Pricey Fertility Treatments Helping Women Have Babies...Or Preying On Them? - Women's Health - October 19th, 2019
- Embodied: The Elusive Science Of Sleep - WUNC - October 19th, 2019
- Cryptocurrency News: This Week on Bitfinex, Tether, Coinbase, & More - May 25th, 2019
- Ripple Price Forecast: XRP vs SWIFT, SEC Updates, and More - May 25th, 2019
- Cryptocurrency News: Bitcoin ETFs, Andreessen Horowitz, and Contradictions in Crypto - May 25th, 2019
- Cryptocurrency News: Looking Past the Bithumb Crypto Hack - May 25th, 2019
- Cryptocurrency News: XRP Validators, Malta, and Practical Tokens - May 25th, 2019
- Cryptocurrency News: Bitcoin ETF Rejection, AMD Microchip Sales, and Hedge Funds - May 25th, 2019
- Cryptocurrency News: What You Need to Know This Week - May 25th, 2019
- Cryptocurrency News: New Exchanges Could Boost Crypto Liquidity - May 25th, 2019
- Cryptocurrency News: Vitalik Buterin Doesn’t Care About Bitcoin ETFs - May 25th, 2019
- Bitcoin Rise: Is the Recent Bitcoin Price Surge a Sign of Things to Come or Another Misdirection? - May 25th, 2019