Autism advocacy: An invitation to an open house

The openness we are promoting with our Saturday Autism Open House in the FS360 Training Center at the NMPASI offices on Pale Arnold Rd. (previously, Middle Road), where children’s and their family’s photos are on display is not by any means a fully done deal, universally accepted as an operating context among its targeted participants.

At this time, it is simply an invitation for members of the Autism Society and others with disabilities and disorders to move out of the shadows and objectively recognize without apologies the conditions of their diagnosis of “neurological disorders, mental and physical disabilities” under the full light of day. The reluctance remains formidable as it is deeply rooted in culture and history. This openness, however, moves the conversation out of the exclusiveness and hidden-ness of the “set-aside” conditions, the “thingification of life,” into the mainstream of wholesome “human nature” experience, dialogue and discourse!

It is also an invitation for families and the affected individuals to be their own advocates in meeting their own requirements. Dependence on social services has been the order of the day, and families either rely on the service providers to be benevolent in addressing their needs, or assume that they would be relentless advocates for them in the bar of public opinion and in the legal salas of judicial deliberations.

The numerous and diverse members of the Autism Society precludes the kind of activism that can capture the passion of the individual members. The Society serves as a formal umbrella organization, but the fire that fuels actions are the small groups and personal relationships that develops among its members. To be sure, at the policy and program levels, an organized group can be an illuminating finger to focus direction, an effective vessel for funding and an efficient vehicle for implementation, but the awakened and alert parents/guardians and affected individuals thinking and acting in concert is an irreplaceable advocate for their own cause. The synergy among a few has been known to be the most potent form of protection and advocacy of a group’s interest.

The power of fellowship as a primal network is a human invention from the time of the hunter-gatherer to the present. Thinking together is a good start.

Autism Studies

Published report in the media about autism and other neurological disorders (e.g. ADD/ADHD) are not always clear because the conditions themselves are better defined on the broad rather than on the specifics. Neurological Disorders (NDs) are often described as having “no known cause and no known cure.” Most alarming in the last decade has been the hurried claims by public research agencies that any link between vaccines and NDs is inconclusive or has been “disproven.”

As advocates, the testimony of parents and affected individuals based on experience, is incontrovertible. For instance, the evidence supporting the position that NDs are environmental illnesses with vaccines as a primary trigger is widely narrated and well documented. The number of published documentations in peer-reviewed journals is growing every day.

Of the wisdom gleaned from research, we consider the following to be pertinent and relevant.

-The scientific debate regarding the genetic v. environmental cause of autism is leaning heavily on the latter. The prevalence of neurological disorders amongst children is growing at an alarming rate, which can only mean that the environment is playing a bigger role because genetic conditions can only grow at the rate of population growth.

-When environmental toxicity in children with neurological disorders is measured, it is meaningfully higher than normal children.

– The brains of children with neurological disorders are experiencing severe oxidative stress and inflammation, suggesting an environmental cause.

– Children with neurological disorders are often suffering from severe gastrointestinal distress and inflammation. The MMR vaccine is widely claimed as a trigger of this inflammation and its resultant behaviors.

-Thimerosal (mercury), a preservative used in vaccines, enters the bloodstream of the child and ends up in the brain. Higher levels of environmental mercury have been shown to produce higher rates of autism. The reverse is equally true, i.e., California claims that there has been a 50 percent decrease in the incidence of autism since the toxic preservative has been withdrawn from the vaccine.

– While reaction to toxins may vary greatly, the preservatives in vaccines, most notably thimerosal and aluminum, are highly toxic and damaging to the nervous and immune systems of a developing child. The symptoms of autism and the symptoms of mercury poisoning are very similar.

-The Government Reform Committee of the U.S. Congress has published reports on the relationship between mercury and autism and on the conflicts in vaccination policy-making.

With the recently launched 18-month journey of a Commonwealth Autism Commission, it is incumbent on passionate individuals to be proactive and not wait to be invited to have their voices heard. Rumors of impending litigation on the aforementioned preservative is rampant, nationally and locally, and it is to the affected families’ interest to stay tuned to developments.

This Autism Awareness month had not been bereft of powerful advocates. The broadcast media have all run special programs, and the White House itself has held special events. For the autism community, this is no longer a time of despair over the paucity of friends and resources; it is rather a time of opportunities and possibilities.

The larger support net for long-term advocacy for persons with “special needs” is a continuing preoccupation of the AS-CNMI as a fellowship and NMPASI (235-7273/4) as a network resource.

Be proactive. Come to the Open House today. Connect. Relate. Advocate.