I hope that any parent considering medication for an autistic child will read Beth Arky's piece inspired by recent research showing that most kids with an ASD are on psychotropic medication:
While there is no medication that affects the core symptoms of autism spectrum disorder (ASD)—difficulties with communication, social interaction and restricted, repetitive behaviors—these kids are being treated for conditions often associated with autism, including anxiety, hyperactivity, and aggression.
The drugs clinicians are increasingly prescribing are aimed at curbing a range of problematic and sometimes dangerous behavior patterns that include everything from sleep disorders to violent meltdowns. These episodes aren't a toddler's tantrums; autistic children unable to express their anger and anxiety, regardless of how verbal they might be, may become so overwhelmed they put themselves and other family members at risk. Some examples: breaking glass, throwing heavy objects, biting and head-butting. The fact that they often have sensory issues dysregulates them further; if a caregiver yells at a child in an effort to rein in behavior, it tends to have the opposite effect.
Beth talked parents, doctors, and self-advocates, including me:
This notion angers former teacher and advocate Landon Bryce, who blogs at thAutcast. "I think if medication worked as well as doctors, parents and school administrators like to pretend it does, this would make a lot of sense," he says. "But it doesn't. You are talking about giving kids meds to make them more manageable. You are talking about making them stupider—I never taught a kid who did not feel that way about his meds—in the hope of helping them learn more. That is stupid."
Dr. Elliott says that with younger children, under 5 or 6, he "absolutely pushes" for other types of behavioral interventions with the child and family first to address problem behaviors. But he acknowledges that society's expectations and a lack of resources can prevail over this approach. "School tells the family, 'We can't keep your child in this classroom because of his behavior, so why don't you try medication?'" he says. "There can be a real pressure to do it."
It's exactly this type of outside pressure that has Bryce up in arms. "I spent 20 years as a classroom teacher," he says. "I was consistently alarmed at the pressure parents are under to medicate their children and the pressure on kids to continue taking medication that they hate being on. I think medicated kids are easier to control. I think they are much harder to teach."
It's an honor to be included in an important piece of writing like this, with smart people like Ari Ne'eman, Jennifer Byde Myers, and and Shannon Des Roches Rosa.
Jenny McCarthy explains what happened when her son Evan's dentist told her to take a picture of an abscess in the boy's mouth:
McCarthy did as instructed. "I went to the bathroom and I was shoving my iPhone in his mouth. I'm taking a picture of it and I'm sending it to the dentist and I sent him a nude on accident!" she recalled. "I swear to God!"
The self-snapped photo in question was originally taken for her "new boyfriend," Chicago Bears linebacker Brian Urlacher, 34. "The dentist is, like, 80 years old. I literally screamed at the top of my lungs," McCarthy said, laughing. "Is there an app? Like, 'Uh-oh! I Effed Up!'"
She's the mother of a young boy who keeps nude pictures of herself on a phone she doesn't understand how to use very well. And shoves into his face.
Not exactly someone to go to for parenting advice, in my opinion.
Via the amazing Beth Arky
Ashley Johnson looks at Aspiritech and another innovative companies that are finding employment for autistic people:
Moshe Weitzberg, director of operations, said Aspiritech has 14 employees, including his 32-year-old son, who has Asperger’s syndrome. His workers have the ability to focus and spot irregularities that other people would miss. They also deal with challenges related to their autism — some do not like noise or bright lights and many have anxiety issues. Aspiritech has an autism specialist who provides support that extends beyond the workplace.
“This is something that not every company is willing to do,” Weitzberg said.
A new article about Nick Faulds, a high school basketball star with Asperger's syndrome, goes into affecting depth about his life:
Recently he handled a situation without incident that five years ago his father says would never have happened. Someone referred to Faulds as a "retard," he says.
"I don't care for that word at all. I don't like it when people call anyone a retard," says Faulds, whose cadence, like others with autism, is halting and distinct. "I almost lost it but I was able to control myself."
Beth Arky's second piece about sensory processing issues explores treatments:
The idea behind SI therapy is that specific movement activities, resistive body work, and even brushing of the skin can help a child with sensory problems experience an optimal level of arousal and regulation. This, according to OTs, can actually "rewire" the brain so that kids can appropriately integrate and respond to sensory input, allowing them to both make sense of and feel safer in the world. Such "rewiring," writes OT and SMILE Center clinical director Markus Jarrow in Cutting Edge Therapies for Autism, can decrease anxiety, making them "more confident, successful and interactive explorers."
This assertion is controversial, as is the description of sensory processing problems as a condition—sensory processing disorder (SPD). SPD is not recognized by psychiatrists as a diagnosis, though they acknowledge that children do have problems based on over- or under-receptivity of their senses. Most, if not all, children and adults with ASD have significant sensory issues. But not all who do are on the spectrum; they may have ADHD, OCD or other developmental and learning delays, or no other diagnosis.
Both the description and treatment of SPD are based on the work of Dr. A. Jean Ayres, an OT who added to the traditional five senses two "internal" senses: body awareness (proprioception) and movement (vestibular). Proprioceptive receptors, found in the joints and ligaments, facilitate motor control and posture; vestibular receptors, located in the inner ear, tell the brain the body's position and where it is in space, key to balance and coordination, among other things.
Want to know about autism? Ask someone autistic!
This is a crucial moment for the autism branch of the civil rights movement. We have more visibility and momentum right now than we have ever had before.
In the last couple of weeks, there have been a remarkable number of essential publications. We can make a difference in how autistic people are perceived in the media by supporting them.
Please take as much time as you can in the next few days and read as much of the material in this post as possible. I've decided to put them together because I want to emphasize their collective importance. Try to visit each of these links. Like, share, comment. Let people know that this is the sort of coverage of autism you want to see. Let these stories change the way you think about us.
We are at a moment when the narrative that the mainstream press tells about people with autism can change in a huge way. I know that because USA Today picked up a story from the Indianapolis Star about adults with autism that included Ari Ne'eman, the president of the Autistic Self-Advocacy Network.
In the story, Shari Rudavsky explores the growing movement to view autism as a condition that can have advantages as well as disadvantages, and the desire of autistic people to play a greater role in policy that concerns us:
Giving those who have autism a voice in the debate is critical, said Ari Ne'eman, the group's president and a founder. Discussing treatment and research priorities without listening to those with autism would be like allowing men to run the women's rights movement, he said.
"Frankly the national conversation in this country has been dominated by parents and professionals," Ne'eman said. "They have a valuable voice, but it's not the only voice out there."
Less than 1 percent of research funds go to support services for the needs of adults with autism, he said.
She references Laurence Mottron's remarkable commentary for Nature, which is clearly a game-changer in terms of how the press is thinking about autistic people. Nature is now allowing free access to the article, and you must read the entire thing.
Too often, employers don't realize what autistics are capable of, and assign them repetitive, almost menial tasks. But I believe that most are willing and capable of making sophisticated contributions to society, if they have the right environment. Sometimes the hardest part is finding the right job — but organizations are now arising to address this problem. For example, Aspiritech, a non-profit organization based in Highland Park, Illinois, places people who have autism (mainly Asperger's syndrome) in jobs testing software (http://www.aspiritech.org). The Danish company Specialisterne has helped more than 170 autistics obtain jobs since 2004. Its parent company, the Specialist People Foundation, aims to connect one million autistic people with meaningful work (http://www.specialistpeople.com).
Many autistics, I believe, are suited for academic science. From a young age, they may be interested in information and structures, such as numbers, letters, mechanisms and geometrical patterns — the basis of scientific thinking9. Their intense focus can lead them to become self-taught experts in scientific topics. Dawson, for example, does not have a scientific degree, but she has learned and produced enough in a few years of reading neuroscience papers to conduct certain types of research. At this point, she deserves a PhD.
In addition to his comments in Rudavsky's article and the piece he wrote for Austistics Speaking Day on autism and Community, Ari also discussed his opposition to "Death with Dignity" laws on Dr. Oz's website:
How can choosing to die ever be a truly voluntary choice in a society that fails to provide life with dignity for disabled Americans?
If the only alternative to death offered to those who require assistance is poverty and segregation, we are not providing people with meaningful choices. Seniors and disabled Americans who require assistance in activities of daily living must often spend their assets and limit their income in order to qualify for the Medicaid coverage which will pay for their long-term services and support needs. Once they qualify, this enforced poverty is compounded by rules that make it difficult, if not impossible, to get services in the community, forcing hundreds of thousands into nursing homes and institutions, where loss of autonomy is a given. This, not illness, is why people make the choice to die.
But the most significant publication that Ari has been involved with lately is ASAN's Navigating College project. This handbook for college students, which can be ordered for purchase here or downloaded for free here, is essential reading for all autistic students in high school and college, as well as their parents. Adults who are long past college age will also find much to enjoy and think about here. I cannot recommend it highly enough.
ASAN's 5 Year Anniversary Celebration is November 16. Kathryn Bjornstadt and Corina Becker will be honored for their creation of Autistics Speaking Day. Please support their efforts as well by continuing to read as many of this year's submissions as possible. And please support the individual writers as well, by continuing to visit the ones you learn from.
I continue to learn, and laugh by visiting OWL.
One final remarkable piece of writing that I want to make sure you are aware of. It comes from thAutcast friend Beth Arky and is an examination of sensory processing issues for parents:
Children, teens and adults with SPD experience either over-sensitivity (hypersensitivity) or under-sensitivity (hyposensitivity) to an impairing or overwhelming degree. The theory behind SPD is based on the work of occupational therapist Dr. A. Jean Ayres. In the 1970s, Dr. Ayres introduced the idea that certain people's brains can't do what most people take for granted: process all the information coming in through seven—not the traditional five—senses to provide a clear picture of what's happening both internally and externally.
Along with touch, hearing, taste, smell and sight, Dr. Ayres added the "internal" senses of body awareness (proprioception) and movement (vestibular). When the brain can't synthesize all this information coming in simultaneously, "It's like a traffic jam in your head," Peske says, "with conflicting signals quickly coming from all directions, so that you don't know how to make sense of it all."
So--- I'm off for the day.
You've got reading to do.
We are also part of the Circle of Life.
Sunday, October 2, the Theater Develop Fund sponsored Broadway's first autism-friendly performance. thAutcast friend Beth Arky has written a piece about that matinee of The Lion King that goes into beautiful and enlightening depth about one autistic child's experience. Beth wrote in first person, after interviewing a friend who attended with her 8-year-old son, who has PDD-NOS. The focus on a child with that type of autism is unusual, and it's one of the reasons this is so special.
But mostly it's the willingness of the boy's mother to enter his emotional life, without focusing on her own frustration. He is excited to see the show, but he just can't get through the door:
I spend a good 10 minutes talking. I tell him, "This is especially for kids like you who don't like things too dark or too loud. You know you can trust me. I know you want to leave, but you don't want you to miss the characters coming down aisles—you were so looking forward to seeing the giraffes." I remind him of the time we went to the Thomas the Train live show: "I told you to squeeze my hand and you got through it and loved it. You're going to get this just like that."
Now he's calming down. He's at the wall in the vestibule and he sees his dad and sister in the seats. I make him stay there so he can get the visual. I tell him, "Stand here, take deep breaths." But he's crying real tears and it's breaking my heart.