Neurofeedback is a form of biofeedback which employs electroencephalography (EEG) and functional neuroimaging processes to focus upon the central nervous system and the brain. By using monitoring devices attached through sensors on the scalp, neurofeedback detects, amplifies and records brain activity, pinpointing areas of the brain that are either hyperactive or disconnected.
Neurofeedback training (NFT) can be initiated as early as age one or two and may provide a foundation for treatment of autism spectrum disorders (ASD).
Doctors believe that autistic brain lack the basic “pruning” skills that are a natural process of early neurotypical brain development.
NFT helps remediate brain imbalances of excitation and inhibition through the careful guidance of a trained practitioner. Nerves with high connectivity are
assisted with advanced NFT approaches that facilitate coherence. Deficient active nerves are brought to a level of normal function that helps build rapport
between the brain and body.
Often, the trainee is not consciously aware of the mechanisms by which ensuing positive changes are accomplished. They experience no pain during the
non-invasive, drug-free experience.
While not definitive, a recent scientific study does suggest that improvement in the condition of children with autism after undergoing NFT is actually because it addresses a co-morbid condition of Attention Deficit Disorder (ADD). Although the study acknowledges that it was limited in scope, it casts doubt that NFT is appropriate for ASD alone.
Like Sensory Processing Disorder, ADD frequently goes hand in hand with autism. Few children with autism escape concomitant problems. The heartening
take away is that improvement in one area carries over into others.
Susan Moffitt is the mother of high functioning twin sons with autism. When not advocating for them, she pursues her multiple creative passions of fine art,
piano composition and writing. She is the author of "Upstream," a compilation of poetry, fiction and anecdotal tales that deal with raising twins
with autism. For more information, visit http://SusanMoffitt.com
The Australian reports that researchers have identified two biologically different strains of autism, a breakthrough likened to the discovery of different forms of cancer in the 1960s.
Researchers from the University of California Davis’s MIND Institute in Sacramento began the Autism Phenome Project, a longitudinal autism study undertaken in 2006. By studying the brain growth, environmental exposure and genetic make-up of 350 children aged between 2 and 3.5 years, they uncovered two biologically distinct sub-types of autistic brain development.
One group comprised entirely of boys, had enlarged brains and most of the subjects had regressed into autism after 18 months of age. The second group, whose sex was unidentified, appeared to have compromised immune systems.
Research leader and Psychiatry professor David Amaral hopes the findings will lead to more individualized treatment. For instance, if a child has an immune form of autism, manipulating the immune system would be of primary concern. Similarly, focusing on the synaptic functions in the enlarged brain typical of the second strain of autism identified would take precedence.
Amaral predicts that they will discover as many kinds of autism as there are forms of cancer. The recent findings are seen as a key to understanding the causes of autism, developing appropriate and effective treatments, and arriving at a cure.
Another scientific story coming from Australia is that researchers are close to being able to offer new screening tests for unborn babies by which likelihood of autism can be established prenatally. Senior Research Fellow Dr. Andrew Whitehouse of Telethon Institute for Child Health Research remarked, “What we hope to do is identify risk factors or biological markers that may tell us this fetus could be at increased risk of autism later in life so we can increase the monitoring of that child after birth."
While these stories are seemingly good news, they both give me reason to pause. One can only hope that treatment protocols experience breakthroughs
at the same rate as research. My son with autism also has Crohn’s, an autoimmune disease. In the hospital, his doctors’ idea of “manipulating the immune system” was to shut it down with Remicaid, a powerful, lifelong chemotherapy course known to induce rheumatoid arthritis and lymphoma frequently enough that it carries a black box warning.
At some peril we escaped that fate. Two years later, his Crohn’s is in remission through diet, supplements and LDN, a cream that is rubbed into the skin, serving to regulate the immune system. While he is at his healthiest ever, his treatment plan is considered radical, even subversive by the vast majority of doctors.
In the future, I can see different strains of autism being treated like cancer – powerful drugs attacking the problem. Except autism isn’t cancer and many people feel it to be an alternate reality rather than something to be eradicated.
Which brings us to the in utero screening for autism. How can this not spell pregnancy terminations for worried would be parents?
My conclusion is that we are perched on top of a very slippery slope in which “progress” will be judged subjectively by all the autism stakeholders.
ABOUT THE AUTHOR
Susan Moffitt is the mother of high functioning twin sons with autism. When not advocating for them, she pursues her multiple creative passions of fine art,
piano composition and writing. She is the author of "Upstream," a compilation of poetry, fiction and anecdotal tales that deal with raising twins
with autism. For more information, visit http://SusanMoffitt.com
Sensory Processing Disorder (SPD), formerly known as Sensory Integration Dysfunction, is a neurological disorder causing difficulties with taking in, processing and responding to sensory information about the environment and from within an individual’s own body. The senses include visual, auditory, tactile, Olfaction (smell), gustatory (taste), vestibular (balance and spatial orientation) and proprioception (or kinesthetics, the sense of one’s own limbs in space).
While SPD is a condition separate from autism, 80% of individuals with autism also have SPD. Those who have SPD alone are sometimes mistaken for having autism so when their sensory issues are addressed, their “autism” is resolved.
A child with SPD is either going to act out or withdraw in order to manage the overwhelming stimuli of their environment. Lindsey Biel, author of “Raising a Sensory Smart Child” recommends first and foremost ruling out a physical reason for a given behavior, (i.e. if the child is hitting their ear, check for infection). From that point, take the behavior as a clue to what is bothering the child. Once that is addressed on a personal level, try to make the child’s environment more sensory friendly.
Numerous strategies and products exist to help you in this quest, and Ms. Biel’s website http://www.sensorysmarts.com features many products and suggestions. For instance, in the school environment, one of the most loathsome sounds is chairs being dragged across linoleum. Taking an old tennis ball and cutting an X in it with a Xacto knife, then capping the legs of chair eliminates this problem. One school was savvy enough to do this to every chair in the lunchroom. The dreaded fire drill can be very traumatic, so you can have it written into your child’s IEP that they be told ten minutes in advance of the drill so they won’t be startled and can put on noise reducing headphones.
Addressing SPD in the classroom will help ensure your child’s success and skirt potential conflicts with educators. Self stimulating behaviors, or “stimming” are frequently punished by teachers unaware that they serve a self-calming purpose in the face of environmental stress. One of my son’s teachers sent him to the hall every time he tapped his pencil or fidgeted in his seat. Soon he was out in the hall crying all day every day. Behavior classes are often rife with children who have undiagnosed SPD – I had to fight tooth and nail to keep my son out of such a program.
My growing awareness of SPD helped unravel a mystery about my son’s condition. Diagnosed as psychotic in fourth grade and given Risperadone, I noticed more and more that the voices he reported hearing intensified with near heavy traffic or in a cacophonous locker room. When Risperadone was a miserable failure and his psychiatrist was pressing for Lithium, I postulated that SPD heightened his anxiety and if those issues were addressed, marked improvement would follow. Employing noise reducing headphones, seamless socks, chew toys, etc. confirmed my hypothesis and laid to rest his doctor’s ominous warnings of schizophrenia in my son’s future. His “voices” were actually OCD intrusive thoughts brought on by extremes of anxiety fueled by SPD.
As a parent it’s wonderful to witness how something as small as a special cushion on a chair, or tee shirts without labels can instantly improve the quality of your child’s life. Carrying that knowledge into the field helps your child navigate his or her world. If you have unanswered questions about your child’s specific problems Ms. Biel’s book has a reference section to immediately identify solutions to any given sensory issue.
Parents of children with autism often experience life as a matter of making it through each day. But no matter where we are in our journey with our child’s autism, we wonder what lies ahead for them as adults. Reports of children aging out of their special education programs and
support systems at school with no services to replace them tell us society can’t handle the current reality, much less what’s around the bend.
Another exciting program is the nonPareil Institute in Plano, Texas, a nonprofit corporation dedicated to providing computer training to students on the autism spectrum. Their technology-based programs make use of artistic software, code generation, 3D animation studio tools, digital sound applications and other creativity enabling tools.
In a dedicated space at SMU (Southern Methodist University) in Plano, participants receive full-time instruction in creating new products for release to the general public, with projects targeting the PC and iPhone/iPad. The nonPareil plays to participants’ strengths, generating a sense of community, purpose and opportunity for them. A video on their website features a woman with autism who had consigned herself to a life of throwing newspapers. After finding
NonPareil, she created a math app that is currently for sale on iTunes.
In the future nonPareil wants to have its own space and double the number of participants to two-hundred. Next on their agenda is expanding their facility to accommodate the lower-functioning and higher-functioning alike who wish to learn, work, play and live on-site.
Stories such as these let me know that there are people hard at work to meet the current and future needs of adults with autism, providing them a place where they can thrive both personally and professionally while benefiting society at large. That nonPareil intends to eventually provide housing and include both higher and lower functioning individuals is icing on a quite magnificent cake.
Known for being fierce advocates, parents of children with autism have done an excellent job in recent years at tapping into social media
to make their voices heard. And as the prominence and influence of Facebook, Twitter and YouTube continue to grow, these sites have become a powerful tool for parents to advocate and be a voice for their children.
Case-in-point is a recently posted YouTube video from a father of a young girl with autism. Uploaded only a few weeks a ago, the video has
been heavily circulated and already amassed nearly 50,000 views in that short time.
It’s a simple, yet powerful presentation done to the backdrop of Coldplay’s "Fix You."
The video is particularly powerful due to its lack of spoken word and creative use of colors.
I first became aware of the video by someone who is not directly affected by autism, so it’s nice to see it reaching many others outside of the autism community. In his blog at http://lous-land.blogspot.com/
"Lou," the video’s creator, writes the following:
"I just wanted to take some time to thank everybody that has taken the time to watch and comment on my “Fixing” Autism video. I think I have shed as many tears reading the stories that are being shared as it sounds like viewers have shed while watching the video."
Take the time to watch the video below and good luck keeping a dry eye.
A couple of interesting news reports on vaccines and autism were recently juxtaposed.
The Elizabeth Birt Center for Autism Law and Advocacy (EBCALA) has conducted extensive research on the vaccine compensation program as it relates to incidents of autism. In the face of overwhelming and concerted opposition, HDNet’s World Report and its Emmy-award winning journalist Greg Dobbs aired “Vaccines and Autism: Mixed Signals” on August 23. The show, which is available for download through iTunes, took an unbiased look at at cases in which the government has been compensating autism as a vaccine injury over the last twenty years, while still publicly denying the connection.
Dobbs requested interviews from Health and Human Services (HHS), the Department of Justice (DOJ) and the Vaccine Injury Compensation Program, but none were granted. As a matter of fact, HHH Secretary Sebelius requested that the media stop covering parties who are critical of vaccine safety, an Orwellian turn of events in a society that is supposedly based upon free speech and freedom of the press. When
pushed to confirm the quote that appeared in a Reader’s Digest interview, the HHS responded in writing that
“no one here can remember or determine that this quote is factual.”
Subsequently, EBCALA calls for this response from government and media:
1. Secretary Sebelius should disavow her censorship request.
2. The media should report on censorship in the vaccine safety debate.
As if in call and response, the Institute of Medicine just released a new report based upon a review of 1,000+ research articles by a committee of experts that re-confirmed no causal link between vaccines and autism. In the fine print:
"However, there was convincing evidence that certain vaccines may be linked, albeit rarely, to 14 health outcomes, including seizures, inflammation of the brain and fainting.
The measles-mumps-rubella vaccine (M-M-R II, Merck) may result in fever-triggered seizures in some cases, but the seizures rarely yield long-term effects (supposedly). This same vaccine may also cause brain inflammation in severely immunocompromised patients.
The varicella vaccine (Varivax, Merck) was linked to brain swelling
Anaphylaxis may be caused by six vaccines: MMR, varicella, influenza, hepatitis B, meningococcal and the tetanus-containing vaccines."
ESCALA found a high correlation between children who suffered these adverse effects after vaccines and onset of autism. The report concedes one, but not the other.
Now here’s the punchline:
“The review will be key to aiding the Department of Health and Human Services administer the Vaccine Injury Compensation Program, according to the authors of the IOM report."
The Vaccine Injury Compensation Program is currently crushing the claims of autism with renewed vigor. This IOM report leaves them locked and loaded for the future and seems to further rule out any promise of congressional inquiry into vaccine safety.
Even Thoughtful House, whom I considered a beacon of light for investigating the synergy of vaccines given closely spaced, has seen an exodus of its founding members, a new name and a diluted, more publicly palatable purpose. Who is continuing on in search of impartial truth in the face of nearly insurmountable opposition?
I myself feel bludgeoned by reports of the definitive safety of vaccines. Trouble is, the more they say it, the less I believe it.
ABOUT THE AUTHOR
Susan Moffitt is the mother of high functioning twin sons with autism. When not advocating for them, she pursues her multiple creative passions of fine art,
piano composition and writing. She is the author of "Upstream," a compilation of poetry, fiction and anecdotal tales that deal with raising twins
with autism. For more information, visit http://SusanMoffitt.com
Disability Scoop
brings an uplifting story of a teenager named Sarah Cronk of Bettendorf, Iowa, who started the nation’s first school-based cheerleading squad including students both with and without disabilities. Sarah was inspired to do this after her brother with autism was befriended by the school swim team
captain and she witnessed how much that helped him.
Now thirty-three schools as far flung as South Africa have followed her model of pairing students with autism and other disabilities with neurotypical teens who act as peer coaches. The students all perform together at high school athletic events.
Sarah’s efforts evolved into an organization called The Sparkle Effect that recently won a Do Something Award, “the largest and most prestigious prize in the world for young people and social change.” She received a $100,000 check in a star-studded awards show on VH1. Cronk plans to use the funds for training, uniforms and other supports in order to expand the program to still more schools.
Mainstreaming is hailed as the most appropriate form of education for youngsters on the autism spectrum, but without proper awareness and support on the part of the school, it can be a time of intense isolation and stigmatization. Kids in autism inclusion programs are documented to suffer higher rates of bullying than their neurotypical peers. The most heartening aspect of Sarah’s integrative cheerleading squads is that members with disabilities are finding more acceptance and inclusion outside the squad. She reports that “people are more willing to talk to them at school. It puts the spotlight on their abilities rather than their disabilities.”
This story also highlights the unique role of siblings to act as ambassadors for their brothers and sisters with autism. Wise beyond their years and compassionate because of their family experience, they are often the innovators in paving the way for the developmentally disabled to more truly belong.
The number of diagnosed cases of autism is exploding. Children with autism will grow into
adults and society is nowhere near ready to support them. In order to prepare for that eventuality, current adults on the autism spectrum need to be studied, but researchers are having a hard time finding them.
Concerned about the lack of information on the prevalence of autism in adults, autism expert David Mandell and his team conducted a study entitled: Prevalence and Correlates of Autism in a State Psychiatric Hospital. He
concluded the following:
"Ten percent of the sample had ASD. More than other patients, their onset was prior to 12 years of age, they had gait problems and intellectual disability, and were less likely to have a history of criminal involvement or substance
abuse. Undiagnosed ASD may be common in psychiatric hospitals”.
One in ten people confined to state mental institutions probably have undiagnosed autism!
For the record, I do not believe that these invisible adults on the spectrum together with children being diagnosed earlier and more effectively account entirely for the epidemic of autism. Genetic propensity is provoked by environmental triggers that have grown in number over the last twenty years, including the environment of the womb.
The number of undiagnosed individuals languishing in institutions is disturbing and heartbreaking, bringing to mind the heroes of “Wretches & Jabberers” who toured the world after being confined to adult disability centers all their lives. With the introduction of keyboarding came expressive freedom for the non-verbal pair who galvanized the world, shattering autism myths in their wake.
Do we simply ignore the moral imperative this study represents? These people’s lives could still be improved and enhanced given proper diagnosis and treatment. They can be given tools to communicate, a path out of isolation.
While the significance of this study is being hailed in terms of accurate counting of adults with autism, I’m wondering who will address those numbers as the individual human beings that they
are and help them improve the quality of their tragic lives.
My sons with autism have always loved comics. Now teenagers, they still gravitate towards graphic novels. Having a story broken down into small illustrated segments is inherently appealing to individuals with autism.
A comic book writer in New Jersey named Joe Caramagna tumbled into this affinity by reading comic book message boards. Inspired by the notion that comics could make a difference in the life of a child with autism, he has written a new issue of DC’s “Batman 80-Page Giant 2011” that features a young boy with autism as its protagonist. Reasoning that comics could unlock a child’s imagination and creativity, he named his new work “One Lock, Many
Keys."
“One Lock, Many Keys” focuses on a child with autism named “Lucas” immersed in the pages of his comics as his parents argue over whether or not he should be reading them. As they leave his room Lucas claps his hands and mutters to himself, a reaction recognizable as autistic.
He crawls into bed just as something rushes past his window. Climbing onto the fire escape, he gets caught in a battle between the Batman and the hulking, zombie
super villain Solomon Grundy.
Caramagna leaves the ending open to interpretation as to whether the encounter was real or played out in Lucas’ imagination, but in the final panels of the comic, the boy’s parents are delighted when he has achieved a new developmental milestone.
Without knowing that cartooning is already widely used to help children on the spectrum learn about emotions, Mr. Caramagna has created a sensitive,
inspiring and thrilling story involving autism. This is the first time a Batman story has dealt with autism since the inception of the series in 1939.
Many children with autism have a well-documented interest in trains, enthralled by their motion and predictable patterns. They tend to prefer trains to planes because of their back-and-forth motion, in contrast to the variability of flight patterns. With their complex schedules and maps, trains have a great deal of information for
those with autism to enthusiastically master.
In recent years, the New York Transit Museum has seen a surge of patrons on the autism spectrum and is constantly receiving field trip requests from autism classes. Riding the wave of this popularity, the museum created an after-school program for 9- and 10-year-olds called “Subway Sleuths” that concentrates on the history of New York City trains while fostering the social skills of the youngsters. Lauren Hough, an adviser to the “Subway Sleuths” program, was blown away by the participants’ command of details. When she asked how to get anywhere in the city, some of them could tell her not just which train to take, but the exact number of stair steps in each of the stations. The program has been such a hit it will be expanding in the fall.
Britain is the leader in the movement to harness the enthusiasm children with autism have for trains. Their National Autistic Society routinely organizes Thomas the Tank Engine fund-raiser walks for autism. High school students with autism were recently invited to visit the timetabling department of The London Transport Museum and The National Railway Museum in York, England initiated a disability forum to better serve visitors with autism. At the local level one autism family support group started a train club, inviting the kids to play with trains while their parents talk.
Here in Seattle, a train runs along the beach at Carkeek park. When it approaches, children scattered throughout the woods and shore rush to see the cars pass by. On a cautionary note, children with autism can be drawn to railroad tracks in the same way they are drawn to water. At Carkeek, my son was fascinated by the warning lights and wanted to climb up to the tracks to look at them, oblivious to the danger.
It’s interesting that in the news there’s been reports on neurological reasons for children with autism having difficulty with multitasking. It stands to reason that individuals with a one track mind would find delight in trains, and it’s a wonderful trend that this enthusiasm is being constructively channeled.
ABOUT THE AUTHOR
Susan Moffitt is the mother of high functioning twin sons with autism. When not advocating for them, she pursues her multiple creative passions of fine art,
piano composition and writing. She is the author of "Upstream," a compilation of poetry, fiction and anecdotal tales that deal with raising twins
with autism. For more information, visit http://SusanMoffitt.com
