Can’t make IMFAR? Don’t worry, four of our TPGA editors are covering the International Meeting for Autism Research in Toronto, Canada, from Wednesday May 16 through Saturday May 19. Reporting starts with today ‘s 11 AM ET press conference (assuming Shannon & Jen make their flight, which has been delayed, eep — stand by). Panel & presentation coverage will be posted here www.thinkingautismguide.com, via Twitter, and of course on the TPGA Facebook page. Follow us on Twitter at @thinkingautism, @jennyalice, @aspieadvocate, @ejwillingham and @shannonrosa. And if you’re at IMFAR, you can also buy our books at the Autism Science Foundation table — 100% of sales benefit the ASF. If you see one of us, say hi! Science devotees out!
Tag: Jennifer Byde Myers
Jennifer Byde Myers jennyalice.com I wasn’t asked to have a conference with Lucy’s teacher, Ms. June, but Lucy asked me to make an appointment just the same. I sort of wanted to check-in anyway given that my daughter is already a different kind of person than I was at her age with her own way of learning things and her own worries and passions. She is enough like me that I see myself –my mannerisms, for example, and I can hear my inflections in her voice, and yet she is enough different that I do not always understand what makes her tick when I tock. So I like to get other people’s perspective on her whenever I can. We have lots of people who report about Jake to us, since he can’t tell us his stories himself. There is even a journal that travels back and forth to school each…
Jennifer Byde Myerswww.jennyalice.com Grocery shopping this morning, a mom and her son passed by me in the floral department. She is probably in her 50’s because her son looked about 10 years older than mine… and yes, her boy plays for our team: Autism. Right down to the 6 foot 2 inches of young man flapping his hands next to the strawberries and “oooo–Wheeeeing” in the dairy section. I could tell before the stims though, it’s amazing how quickly I can spot a person with autism who’s in the same part of the spectrum as Jack. When I see another family with a special needs child, I always try to smile — at the child, or the parent, hopefully both, to show that, even though I don’t have a stamp on my forehead or my son in tow, I understand a little bit about their life. I always hope that…
Jennifer Byde Myers www.jennyalice.com My son Jack is a long, lean, boy with an odd gait and a subtle smile. His first diagnosis was benign congenital hypotonia, which was later upped to cerebral palsy, ataxia. He added his autism diagnosis just after he turned three, about the same time he began to walk. He can spin a plate over and over again, but he can not yet stab a piece of food with a fork. He straddles the worlds of ‘autism’ and ‘special needs’; stimming, using a wheelchair as necessary when his muscles are too weak, or when the environment is too bustling. He’s a young man of few words, unless he does say something, at which point he is always relevant, and often wry. I’m his mom, so I can generally guess what he needs, but communication is a struggle; it can be hard for him to clearly share what…
Jennifer Byde Myers www.jennyalice.com My son was almost three when we realized how much he needed a label. Without an official diagnosis, it would be nearly impossible for him to get services he needed from the county or state. A label is required so bureaucrats can check the correct boxes, which allows everyone to take money out of the right vat with the right dipper. It’s a huge pain, by the way, more difficult than finding childcare or signing your kid up for summer camp. Getting someone, anyone, to write down, definitively, what is “wrong” with your child is a serious lesson in patience, persistence and the power of language. No one wants to be the first person to label your child. We begged to get “cerebral palsy, ataxia” to describe Jake’s odd way of hipping, and hopping, and stumbling around. No one worried about anything behavioral at that point,…
Jennifer Byde Myers www.jennyalice.com In our family, we make medical decisions using science, facts, and data, and we believe in keeping our children healthy, so we vaccinate. I have never thought that vaccines caused my son to be autistic. Except for that one time. Lucy was a perfect baby; not that she never cried, or blew out a diaper, but she held her perfect little round head up, and rolled over on time, and she just looked. so. perfect. When she was four months old I took her for her routine vaccinations. She was in the 90th percentile for height, the 75th for weight…right on track, and the nurse gave her 3 shots: HIB, Pneumococcal Prevnar 7, and inactivated poliovirus vaccine (IPV) She got little round bandages stuck to her little chubby leg. She scrunched up her face to cry and I nursed her a bit, and tucked her back…
These two essays were originally published in the Autism Society’s magazine, the Autism Advocate. While the references here are for the Christian and Jewish faiths, many of the tips could be applied to other religions. We’ve had several posts in the last year about autism and religion, but we are always seeking to add diversity to our knowledge base. If you have an experience you’d like to share about faith, community or religion, we’d love to hear from you please contact us. -The Editors The Christian Perspective By Terri Connolly The church experience is often one of generational tradition for many families. Other families recognize their need for a place of spiritual refuge and nurturing for the first time in their lives when they have children or at other trying times. Christ’s example of “agape,” or unconditional love, is paramount to our understanding of the role of acceptance in…
On March 24, the editors issued this invitation: TPGA would like to share an autism perspective: yours. As members of the autism community, we know that awareness is only a first step. Increased awareness brings opportunities to share our experiences and strive for what people with autism deserve: understanding, and acceptance. …Please send us a short essay on one thing you want readers to know about autism — as it relates to you. Share what you’ve experienced or witnessed. Tell readers about a formative experience; something joyful, or a brief moment of despair. Share your hopes, dreams, past, or future. Anecdotes laced with humor — however dark though not mean-spirited — are especially appreciated. We published 22 stories, vignettes, and interviews. Six personal stories from people with autism Corina Lynn Becker, Why I Am Wearing Black For this young adult with autism, April “is month of reflection, of remembrance. It…
Liz Ditz I Speak of Dreams Academic Remediation I don’t have autism. I don’t have a child or a sibling or a parent with autism. What am I doing here? (Personally, I find that line of thought contemptible: that only those directly affected by autism should be thinking, writing, or advocating for people with autism. But that’s the subject of another post.) How did I become an advocate for people with autism? It’s a long and winding story that isn’t unique to me. I started kindergarten in the mid-1950s, almost two decades before federal law required that children with disabilities have the same access to public education as their non-disabled peers. What did that mean, though, for families and for schoolchildren? Back then, children with cognitive disabilities were either kept at home, with very little support for their parents in the community, or were institutionalized. It was common for families…
I got a chance to talk with Dr. Robert Goldberg PhD about his new book “Tabloid Medicine.” In it he breaks apart the formula for Tabloid Medicine: change the terminology to fit your agenda, create an instant expert, play the little guy against the big guy, proliferate bad information, then find a celebrity to lead the charge. Voila! Your very own epidemic-I make light, but this book doesn’t, since it’s not really a funny topic. We spoke of how he came to the topic as a parent, when his own daughter struggled with misinformation in the media, but continued, fueled by the tragedy that with so much good the internet could be doing, it was being “hijacked” by the likes of Andrew Wakefield, Jenny McCarthy, David Healy, Sidney Wolfe MD, and Barbara Loe Fisher. Passionate about the subject, and well-grounded by facts, Dr. Goldberg answered a few questions for me.…