January 23,2009 Kathryn lives with muscular dystrophy and has become a counselor to help others deal with personal limits
It is America of the 1950s and 1960s, when a woman’s most important contribution to society is generally considered to be her ability to raise happy, well-adjusted children. But for the mother whose child is diagnosed with autism, her life’s purpose will soon become a twisted nightmare. Looking for help and support, she encounters instead a medical establishment that pins the blame for her child’s bizarre behaviors on her supposedly frigid and detached mothering. Along with a heartbreaking label for her child, she receives a devastating label of her own. She is a “refrigerator mother”.
Refrigerator Mothers paints an intimate portrait of an entire generation of mothers, already laden with the challenge of raising profoundly disordered children, who lived for years under the dehumanizing shadow of professionally promoted “mother blame.”
Once isolated and unheard, these mothers have emerged with strong, resilient voices to share the details of their personal journeys. Through their poignant stories, Refrigerator Mothers puts a human face on what can happen when authority goes unquestioned and humanity is removed from the search for scientific answers.
I am a 20 year-old aspergian who was just diagnosed early last summer. I didn’t know anything about autism until a few months before my diagnosis. I’d heard of it, of course, but did I know what it was? Not really. I’ll admit that I was always under the impression that autism was a debilitating disease, made famous by its drooling, blank eyed poster children who don’t speak and do nothing but cause heart ache for everyone around them.
Since my diagnosis a little over a year ago, I’ve immersed myself in the world of autism. Before joining the ranks I had no idea it was such a large community, filled with its fair share of politics and drama.
Over the past year I’ve been to several conferences and autism events, and I’ve met countless individuals on the spectrum. Meeting other autistic people was a huge breakthrough moment for me. It finally clicked that yes, I belong here; I am one of you. I in no way believe diagnosis to be necessary for everyone, but it definitely helped me. Before my diagnosis I was constantly worried that I wasn’t really on the spectrum, something was just “wrong” with me. What if I [...] continue the story
Alex, Kirsten, and Jack are back together in Orlando, Florida for the Autism Society Conference. We had a blast at the conference and filmed a TON of AMAZING videos!
Kirsten talks with Dena Gassner about the special challenges that come with being a woman on the spectrum.
Alex and Dr. Robert Naseef gave a talk about fatherhood at the ASA conference. They talk about the uniqueness of the relationship between a father and an individual on the autism spectrum.
Jack and Alex talk with Claire Dumke about executive functioning. This involves learning to drive, keeping track of things, and other great info.
This is the first of 4 episodes that take place at the conference. This is also the first of our new multipart episodes.
(Autism Talk TV – Ep. 16)
Photo Essay By Anahita Nicoukar Avalos
A sunny day of March 2003, the word COSTELLO entered my life. This was the day a geneticist said: it’s likely that your son has Costello syndrome. He didn’t say a lot more, I didn’t ask anything and before I went back home he took a few pictures of my son. With a small digital camera and the flash in he took pictures of his face, close ups of his mouth, his nose, his hands, his neck, his feet. These pictures reminded me of the pictures you see in medical reviews to describe horrible diseases. My beautiful little boy whom I was so proud of his smile and black eyes, couldn’t possibly have a terrible disease…I couldn’t help thinking, if he wanted some pictures of him why didn’t he ask me ? I could have given him better ones where everyone could see what a nice baby he was.
Once at home I searched Costello syndrome on the web, I learned that “Costello syndrome is a genetic disorder that affects many parts of the body. This condition is characterized by delayed development and mental retardation, distinctive facial features, loose folds of extra skin (especially on the hands [...] continue the story