Autism News Shrewsbury Little Leaguer with autism shines as MVP – Worcester Telegram http://ow.ly/2IFjlj
Autism News Research mattress may sense autism seizures – Kansas.com http://ow.ly/2IFjlk
Autism News Shrewsbury Little Leaguer with autism shines as MVP – Worcester Telegram http://ow.ly/2IFezY
Education – This new innovation in the interpretation of Autism Spectrum Disorder; will provide a greater understanding of the ‘mechanics’ of autism; help to treat and work around the disorder  http://ow.ly/2IEUrI
Autism Self-Advocate Fights For, Wins, Access To Care
The unacceptable state of equal access to healthcare for citizens with developmental disabilities
In a time when many are already concerned about the government’s overreaching, most don’t realize how far that reach already goes for individuals with developmental disabilities. Even with the existence of the Americans with Disabilities Act (ADA), and assuming the individuals manage to get approved for health insurance, additional hurdles remain. Nathan Young, a Self-Advocate in Northern California, says of his social media advocacy, “I do not believe the government should tell me when I can and cannot see a doctor. My doctor made a referral to see a specialist, the California Department of Developmental Services should respect that and allow for my human rights.” He goes on to say, “It’s my job as a self-advocate to tell others if I think something is wrong, especially when others may not be able to express their concerns and or be heard.” People with developmental disabilities have protected liberties, including the right to access medical care and to make their own life decisions.
When children with autism or other developmental disabilities age and familial supports fade, how do we assure quality of their care while maximizing their independence? Increasingly, it seems people in these communities face barriers finding the care they need. In rural areas it can be necessary to travel to larger cities to find specialists for some care, but individuals may be denied the support needed to broach the associated complexities of such visits. Some suggest the solution is to move to these cities, but that removes existing day-to-day support from their communities, and would likely increase their dependence on the government.
Community news Lost Coast Outpost reported on an incident which has increased public scrutiny of Redwood Coast Regional Center. An employee of RCRC tried to instruct the owner of a care home for people with developmental disabilities to impose excessively harsh consequences on a resident struggling with alcohol, even suggesting homelessness or arrest as acceptable outcomes. Certainly people can overreact sometimes, but is enough being done to mitigate the effect in the support of individuals with disabilities? Events like these may routinely remain under the radar if not for citizens and support workers, like the care home owner, brave enough to speak up; but even then, does the media share the news? There needs to be more accountability and transparency near the individual level for agencies like these, better reflecting the laws which already exist.
Additionally, consider how people in the autism and developmental disability communities must recognize and petition for aid in additional health problems, and also may need to finance lawyers and doctors themselves in cases where they must appeal denials from the administration. Sometimes it is expected they prove the existence of an issue, when what they’re seeking is the very testing needed to do so, a cruel catch-22. Is the Department of Developmental Services moving below accommodating even preventive care to ‘no care’?
Many disabilities also carry increased likelihood of additional health impairments, besides the consequent behavioral complications which affect overall health (autism perseveration resulting in self neglect, for example). Autism, Down syndrome and Cerebral Palsy are a few major examples with notably increased comorbidity of other conditions. Yet administrators and sometimes even doctors may neglect these issues as ‘symptoms of the disability’, rather than as distinct, parallel health problems. Go to
for details and updates.
It’s time to start taking all people’s health care seriously!
Nathan Young of Fortuna, California who is diagnosed with autism is self-advocating for preventive care within the Redwood Coast Regional Centers catchment area. Humboldt Medical Group originally referred Nathan for an EEG test. Such testing concluded moderate cerebral dysfunctions, and consequently a referral to the University of San Francisco has been made for a potential extended study. Yet the Redwood Coast Regional Center’s director of adult services, Kathleen Kasmire, who is responsible for authorizing accommodation to receive appropriate care said to Nathan by phone that “it’s not like [he is] falling to the ground and seizing”, and that further support for access to care was not granted due to a purported lack of medical necessity. For years Nathan has elected not to drive, citing disorientation, for his and others’ safety, and never imagined he would have independence in that manner. He depends on Supportive Living Services to help with medical appointments and daily living such as grocery shopping. Recently however, in consideration that there may be treatment for the infrequent but potentially dangerous symptoms such as sudden clumsiness or stupor, he has realized that it may be possible.
Dr. Gerald Drucker, PhD, a psychological consultant with RCRC, in speaking to Nathan by email about this issue wrote “I think ruling out seizures or something else neurological [or] of physiological [origin] is important.” Nathan also consulted with the Area One Board of Developmental Disabilities’ director Dawn Morley, who referred to the situation as ‘unprecedented’. She emailed other board directors to see if others with disabilities were having similar obstacles with access to care through Regional Centers of California, especially in rural areas, and found no one else has reported it thus far. It may be the case, they are randomly denying folks as a pattern of practice due to budgets and hoping people are too afraid or unable to fight for their rights, and this in spite to such needs for accommodations which are well established in individual cases such as Nathan’s.
Statistics vary slightly, but approximately 20-40% of individuals with autism develop epilepsy according to Autism Speaks. Some studies conclude that 12% of autistic children have seizures, but by adolescence 26% have a seizure disorder. The prevalence of epilepsy comorbidity with autism, which can contribute to functional and behavioral difficulties, is well established, even sometimes confused with autism sensory processing difficulties in autism. Preventive medicine, by definition, should entail routine screening, but when symptoms exhibited have similarities to those of epilepsy, it’s even more important to determine the real cause. Particularly because treatments for those with epilepsy can sometimes conflict with treatments for those with only autism. In the right to care and treatment, organizations such as the Redwood Coast Regional Center of California as overseen by the Department of Developmental Disability Services (DDS) is mandated to assist individuals in receiving appropriate care.
Nathan would like to improve his ability to be part of the community. Part of his treatment goals and rights is an optimal outcome as described in Title 17 of the California code of regulations. He says, “It is important to me that if I have seizures, that I be allowed treatment, which can improve my outcome. Yet in a rural area, care can be limited. If seizures are not the problem, I’d then like to look into what can lessen sensory difficulties, with appropriate treatment and so I will advocate to the Regional Center about that too, for myself and others.”
For further information about this story as it updates, please see http://www.autismcandles.com.
The police department in Temecula, California are using tactics against students with special needs that include tricking the susceptible minors into friendships with intent to put them in jail. The tactics have raised concerns among the local citizen of Temecula. In two separate cases, police have involved special needs students in their investigations. One involving a young teen with autism who had no friends and though his parents were thrilled with the boy having a new friend, the social scam ended in an influence to a minor that was less than honorable. In most cases, anytime an adult conducts themselves in these ways, they themselves would be labeled and charged with a delinquency to a minor.
According to the local police department, what the undercover police officer did was simply following the rules in the line of duty; he coerced the teen into finding marijuana by acting as though he were having ‘family problems’, so the teen might help in order to sustain the only friendship in his life. When the teen with autism could not find any further substances for the undercover police officer the friendship ended, and the teen was charged with a crime. The boy’s parents, Doug and Catherine Snodgrass, are suing the Temecula Valley Unified School District for their part in this unfortunate misadventure of friendship.
Individuals with Autism are at much higher risk of developing major medical problems as they age. The first major study of its kind was introduced by epidemiologist Dr. Lisa Croen of Kaiser Permanente Division of Research at the International Meeting for Autism Research (IMFAR). The increased likelihood of health issues extends across from young adults to senior citizens.
For those interested, it’s possible to read the paper on this subject here.
Dr. Robin Hansen is the Director of Clinical Programs at the UC Davis MIND Institute in California and in this lecture she explains the etiological heterogeneity of autism spectrum disorders and gives a review of contemporary autism research. She covers a variety of behaviors seen in autism and correlates them with the biology. Autism Spectrum Disorders are a group of disorders, overall exhibiting a complex and wide variability of symptoms that point to multiple etiologies that share similar core behavioral symptomatology.