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Autism PN

From the syllabus: track concepts, questions, and progress. Follow a link.

Followed link of 4/17/07
Judge Rotenberg Center
Treats 230 of states "most severe" children w/ autism
Center in MA which uses controversial "averse therapies" to treat autism. Includes things like "behavioral skin-shock", water-spray, restraint, etc. Does not include other physical contact.

Student wears a "GED" device [what does GED stand for?] that allows teachers to administer small shocks. School holds that use tapers off and after negative behavior has diminished, students respond to positive behavior modification therapies. Has charts for previous school years showing use of device and how use diminishes over time. http://www.judgerc.org/thumbwriteup.html

Safeguards:
  • Certification: MA certifies school in use of aversives and has to renew every 2 years
  • Parental informed consent
  • Psychologist/clinician designs plan for use
  • Medical pre-approval: psychiatrist, neurologist, and cardiologist
  • Inclusion in students education plan (IEP, etc)
  • Review by peer committee (sounds like IRB, but never mentioned. Also not clear if independent)
  • Human rights committee "JRC has a human rights committee that is composed of parents of students at JRC and other outside lay and professional persons such as a nurse, an attorney, a psychologist or clinician, etc." [Sounds like a less than ideal committee to me]
  • Individual court approval: authorized by probate court of MA
  • Daily oversight by clinician/psychologist
  • Reporting to court (every 4 months)
  • Yearly reviews by court
  • Nursing
  • School monitoring to ensure treatment is decreasing negative behaviors
  • Staff training
  • Staff monitoring: digital monitoring supervisors (cc tv?)
  • Fading use of device
  • Success criteria defined


Doesn't use psychotropic medications. "In providing this treatment, it is JRC’s policy to avoid, or at least minimize the use of psychotropic medication. Although JRC has the ability to administer psychotropic drugs as part of its treatment, has done so in the past and continues to do so at present with a few of its students, the major thrust of JRC’s treatment approach is to accomplish the needed changes in its students without resort to psychotropic medication. This enables JRC to avoid the undesirable and sometimes permanently disabling effects of psychotropic medication."

Followed link of 4/10/07
GA Walk for Autism This is the walk that Gregory has been talking about. Says 10,000 children in GA affected by autism. Benefits research (Autism Speaks) and treatment (Marcus Institute). Also has inspirational stories titled "Why We Walk." Has a great page about current legislative issues and how to contact Congress on behalf of them. One of the best "advocates" pages I've seen; clear, concise, and relevant.

Followed link of 4/3/07
Marcus Institue
Other than autism/ASD, offers services for:
  • Attention Deficit Disorders (ADD)
  • Birth Defects
  • Brain Malformations
  • Cerebral Palsy (CP)
  • Communication/Speech/Language Disorders
  • Developmental Delay
  • Down Syndrome
  • Encephalitis
  • Feeding Disorders
  • Fetal Alcohol Syndrome (FAS) and Related Disorders
  • Fragile X Syndrome
  • Genetic Disorders
  • Learning Disorders (LD)
  • Mental Retardation/Intellectual Disabilities
  • Mitochondrial Disorders
  • Movement Disorders
  • Neurological Disorders
  • Preventing Child Maltreatment
  • Psychiatric Disorders
  • Rett Syndrome
  • Self-injurious Behavior/Behavioral Disorders
  • Sleep Disorders (non-respiratory)
  • Smith-Lemli-Opitz syndrome
  • Social/Emotional Behavior Problems

Partnered/affiliated with Kennedy Krieger Institute
"In October 1998, The Marcus Institute merged with Baltimore-based Kennedy Krieger Institute creating the cornerstone of a plan to establish a national network of developmental services. Together, we strive for fuller integration of individuals with developmental disabilities into school and community life, better access for families to appropriate clinical and educational services, and enhanced funding for research and training."

Followed link of 3/27/07
NY Times op-ed "Autism Parent's Trap" Jun. 5, 2006.
Talks about recent rash of parents killing their autistic children.
"When your child is initially diagnosed, you read the early bibles of hope: "Let Me Hear Your Voice," "Son-Rise" and other chronicles of total recovery from autism. Hope comes from a variety of treatments, but the message is the same: If you commit all your time, your money, your family's life, recovery is possible. And who wouldn't do almost anything — mortgage a home, abandon a career or move to be closer to doctors or schools — to enable an autistic child to lead a normal life?"

"Every parent of a child on the autism spectrum knows this feeling: I've done everything possible; why isn't he better? The answer is simple: Because this is the way autism works. There are roadblocks in the brain, mysterious and unmovable. In mythologizing recovery, I fear we've set an impossibly high bar that's left the parents of a half-million autistic children feeling like failures."

"I remember thinking maybe we'd laugh someday at the lengths we went to when we were teaching him language — the flashcards, the drills, the repetitions. Now he's 10 and talking at last in his own quirky ways, and we don't laugh about the drills (though we laugh about plenty of other things). Language is a victory. So is connection and purposeful play. So are the simpler things: a full night's sleep, a tantrum-free day."

"To aim for full recovery — for the person your child might have been without autism — is to enter a dangerous emotional landscape."


Followed link of 3/20/07
Spring Break!

Followed link of 3/13/07
Blog: NTs are Wierd
Blog written by Joel Smith who is somewhere on the ASD spectrum (but I couldn't find an official diagnosis). Writes extremely thought provoking posts about how he sees the world and how the world sees him. Some very note-worthy posts:
  • Worried for my people "I’m worried for my people. We, as autistic people, are receiving “medical” treatments that are untested. We’re receiving “medical” treatments known to be dangerous. We’re being experimented on by people “looking for hope.” We’re being pumped full of drugs (or “supplements”) that we neither need nor which are beneficial for us - all this not because it is known to help us, but rather because some are so desperate to see their loved one “free” of autism that they will try anything"
  • Diapers and Horror of Horrors "We (society) are imprisoning people. We’re preventing them from communicating, leaving the home, working, or otherwise participating in society - because we’ve taught that the look of independence is far more important than actually having the assistance you need to participate in life."
  • Why Asking for Help is so Hard "My friends need to be friends, not support staff. In fact, I’d say friendship is far more important to me than the support staff is - despite having problems which are growing to the point of becoming dangerous to me, and not having support staff to work through those."
  • What do you love about your autie? "There’s a lot of negativity going on in the autism world. Right now, one prominent mercury-causes-autism list, parents are all talking about how you know you have an autistic if they do various disgusting or horrible things...So, in response to the garbage on the internet and elsewhere, I’m asking non-autistic readers of my blog to write about what they like about the autistic person (or people) in their life."

Followed link of 3/6/07
Wired News Article about the "link" between autism and having 2 geek/math/science/computer parents. Also talks about how Silicon Valley is seeing a huge spike in ASD cases even beyond the rest of CA. Deals mostly with high functioning, Asperger's kids. Interesting points from the article:
  • One thing nearly everyone in the field agrees on: genetic predisposition. Identical twins share the disorder 9 times out of 10.
  • If parents have had one autistic child, the risk of their second child being autistic rises from 1 in 500 to 1 in 20. After two children with the disorder, the sobering odds are 1 in 3. (So many parents refrain from having more offspring after one autistic child, geneticists even have a term for it: stoppage.) The chances that the siblings of an autistic child will display one or more of the other developmental disorders with a known genetic basis - such as dyslexia or Tourette's syndrome - are also significantly higher than normal.
  • Over and over again, researchers have concluded that the DNA scripts for autism are probably passed down not only by relatives who are classically autistic, but by those who display only a few typically autistic behaviors. (Geneticists call those who don't fit into the diagnostic pigeonholes "broad autistic phenotypes.")
  • Last January, Microsoft became the first major US corporation to offer its employees insurance benefits to cover the cost of behavioral training for their autistic children. One Bay Area mother told me that when she was planning a move to Minnesota with her son, who has Asperger's syndrome, she asked the school district there if they could meet her son's needs. "They told me that the northwest quadrant of Rochester, where the IBMers congregate, has a large number of Asperger kids," she recalls. "It was recommended I move to that part of town."
  • Still an iconoclast, Siegel questions whether a "cure" for autism could ever be found. "The genetics of autism may turn out to be no simpler to unravel than the genetics of personality. I think what we'll end up with is something more like, 'Mrs. Smith, here are the results of your amnio. There's a 1 in 10 chance that you'll have an autistic child, or the next Bill Gates. Would you like to have an abortion?'"

Followed link of 2/27/07
Book Asperger's in Love
Book details many aspects of AS from a grownup point of view. Very interesting to see how many of the symptoms (attention to detail, repetitive behavior, etc) affect people in a marital relationship or the children of a long term relationship. Available via ILL from GaTech library. Will write this one up in detail for one of my research reports.
Followed link of 2/20/07
Autism Diva's blog Blog of a woman who has a background in engineering and appears to be incredibly knowledgeable about lab protocols and the physiobiology of possible treatments of autism. Much of her blog is devoted to debunking what she considers to be junk science (a lot on chelation and mercury poisoning) and exposing the agendas of many people advocating for specific treatments.

Followed link of 2/13/07
Combating Autism Act (CAA) This was signed into law in 2006, but it is unclear if this actually included appropriations for the stated purpose of the bill. It authorizes a number of things including:
  • Promote early screening of individuals at higher risk for ASD and other developmental disabilities as early as practicable
  • Promote research into the development and validation of reliable screening tools for ASD and other developmental disabilities and disseminate information regarding those screening tools;
  • Authorizes Regional Centers Of Excellence For Autism Spectrum Disorder Research And Epidemiology. These Centers collect and analyze information on the number, incidence, correlates, and causes of ASD and other developmental disabilities. The Act also authorizes grants to States for collection, analysis, and dissemination of data related to autism.
  • Increase the number of individuals who are able to confirm or rule out a diagnosis of ASD and other developmental disabilities

Followed link of 2/6/07
From Scientific American Mind article "Detecting Autism Early": David Amaral PhD at UC Irvine in Neurobiology and Psychiatry. Director of the MIND Institue Huge institute. Currently enrolling participants for over 25 studies relating to Autism.
The Autism Phenome Project This was the large study mentioned in the paper. Supposedly enrolling 1800 people, although the study recruitment doesn't mention it. Looks like total committment (time-wise) is 9-16 hours, which I think is very low. But such is the power of a high N.

From the website:
"The institute is primarily focused on autism, but not exclusively. M.I.N.D. Institute leadership recognized that it was important to focus efforts initially on a few neurodevelopmental disorders and autism seems a pressing problem where interdisciplinary research is critical. We also have research protocols and see patients with fragile X syndrome, language and learning disabilities, ADHD, epilepsy and other neurodevelopmental disorders."

Followed link of 1/30/07
http://www.kevinleitch.co.uk/wp/index.php Left Brain/Right Brain
http://mysonhasautism.blogspot.com/ My Son Has Autism (continued at www.kristinachew.com)

These are two blogs, the first is UK based and the second is US based. LB/RB originally blogged about his daughter as she was diagnosed at age 3. (The blog then turned into more of a political Autism blog debating various treatment methods, but that's not as interesting to me.) The second blog dealt with her son, after he was diagnosed at age 8. The thing I found interesting about both of these was the struggles with appropriate education for the children. (The UK used different language (ie. "Statementing" for what sounded like an IEP in US-speak), but the process seemed largely the same.) Both sites described multi YEAR sagas of trying to find appropriate schools and then get the federal govt. to agree that those interventions were necessary. Included were tales of non-experts (teachers, principals, etc) overriding drs. diagnosis, meetings scheduled behind the parent's backs, changes to children's schooling w/o consulting parents, etc. I was pretty horrified and wondered how common this is! That if the parents hadn't been educated (and threatened legal actions in some cases), how far would this have gone?

It seems like a lose-lose situation. From the govt's point of view, less money per student = more students treated (spread the $$). From the parent's point of view, their child needs what their child need, regardless of cost. If I was a parent, I'd fight as hard as I could to get what my child needs, but I can't help but really feel for the parents who can't get their kids tested or appropriately placed because the govt. keeps quiet and discourages diagnosis.


Followed link of 1/23/07
Link:The Feingold Diet http://www.feingold.org
Feingold was specialist in allergic reactions (most early work on skin allergies and flea bites). Very distinguished career including many fellowships, chief of pediatrics at Northwestern, chief of pediatrics at Cedars of Lebanon, LA, Chief of Allergy @ Kaiser Permanente. Published first article on food additive allergies at age of 75 (1975).

Couple of main studies:
Synthetic Food Coloring and Behavior: A Dose Response Effect in a Double-Blind, Placebo-Controlled, Repeated-Measures Study, K.S.Rowe, K.J.Rowe, Journal of Pediatrics, November 1994, Vol. 135, pp.691-8

800 children referred to Melbourne (AUS) Children's Hospital for ADHD-like symptoms. Selected 200 of those for an open trial. Used standard questionaire. 6 week diet of no artifical colors. 150/200 parents reported improvement on diet and deterioration when colors reintroduced.

Decided questionaire wasn't good enough and there were problems. Devised new questionaire based on clinical histories of 50 patients: irritability/control, sleep disturbance, restlessness, agression, and attention span (Likert scale).

THen used 34 children w/ behavioral issues and 20 children w/o. Double blind, placebo controlled, repeated measures. Control children placed on color free diet for 6 weeks and others for min. 3 months (flushing system). Each child randomly given dose of tartazine (FD&C Yellow #5) in 1, 2, 5, 10, 20, or 50 mg caplets, or placebo. Placebos given to ensure "washout" of system between coloring doses. Each child his own control.

23 children classified as likely reactors: 4 did not have significant responses
11 uncertain reactors: 3 identified as reactors
20 controls: 2 identified as reactors

Behavior worsened for longer periods of time w/ higher doses.


Followed link 1/16/07
Link: http://www.halo-soma.org/
method to improve academic success and communication in individuals w/ autism
distract student by learning
looks like aimed at nonverbal students
presents answers on all learning channels
  • written answes
  • taps to auditorily indicate location of correct answer
  • spelling them aloud, etc
Sounds like it is for the people who can't distinguish senses and can only use one at a time.

"To start using RPM through reading.....Read a couple of lines from any book, then ask a question, then spell and/or write the selected word. Then read some more and keep doing that throughout. Keep reading, and keep asking questions. For example: "There once was a fox who lived in a den.....What did I say? The fox lived in a den or a tree? Let's spell d-e-n, den.....The fox was hungry, so what do you think he decided to do? Eat or sleep? Let's spell e-a-t, eat."......and so on."

"Paper tearing acts as an auditory, visual and kinesthetic prompt to initiate the student to focus on the written learning activity."

???"Soma converts students' right-brain emotional state by teaching specific subject matter (for example: math and spelling) to activate left-brain reasoning."

Last modified 24 April 2007 at 8:04 am by Valerie Henderson