Autism Treatments Now Involve Partial Toe Removal - Are Mainstream Autism Treatments Becoming More Radical?
Recently, Nathan Young, a self-advocate with autism, attended an Individual Program Plan (IPP) meeting at the Redwood Coast Regional Center (RCRC). The topic of sensory overload issues in people with autism was brought up, and it was discovered that RCRC's current answer to this issue calls for the actual removal of portions of the toes. Caught off guard by this unnecessarily invasive procedure, Nathan remarks;
"It was like I was in a dream, much like an old episode of the Twilight Zone. The solution of removing portions of the toes seemed imaginary, as if it was an out of place joke. And yet they were so confident about this procedure." Nathan likens this unnecessarily invasive treatment to the lobotomy, another unnecessarily invasive procedure that was commonly accepted in the 40's and 50's, only later to be recognized as a dire mistake. He goes on to say, "It is frightening to think that more of these unnecessary procedures could be happening around the country, only behind closed doors."
Sensory overload issues are a common problem in the autism community, ranging from mild to severe, and often occur in the feet toes. In fact, Lynne Page, a California Disability Rights Lawyer, states, "I was in the audience for an on-line training yesterday by Dr. Sally Rogers, one of the psychiatrists involved in the production of the DSM-V. She mentioned there is now evidence that sensory sensitivity may be the first sign that a baby is autistic. ...and is a primary identifier for those with autism."
Left untreated, sensory overload can lead to more serious medical issues, such as infection and/or extreme discomfort, but behavioral and/or occupational therapies have been shown to be an effective treatment for reducing sensory overload issues.
When asked if there was an existing plan for sensory needs for feet, a contact within RCRC stated;
"No. The board needs to develop a policy," and goes on to say that she is definitely open to developing a policy for sensory difficulties in autism, including those in the foot and toe region, however, Young believes her hands are currently tied. She suggested that one would need to go through the Board of Directors, Regional Center Management, and possibly other legislative components to develop a policy.
A lot of legislation specifies a right to treatment, a right to care, a right to freedom from harm, and a right to avoid unnecessary invasive procedures, but policy does not specify regions like the feet and toes. Guidelines for implementing policy may be more specific than the law; allowing these terrible procedures to slip through loopholes and be put into action - even though they are both invasive and unnecessary. Clay Jones, the Executive director of RCRC, could introduce a new solution to the board.
Congressman Jared Huffman's office and the Area One Board of California are looking into the matter.
According to the Department of Justice, Title II of the Americans with Disabilities Act and Olmstead prescribe, "A state's obligations under the ADA are independent from the requirements of the Medicaid program," providing services beyond what policy currently provides with the Medicaid funding given to RCRC. Under the Lanterman Act, RCRC is most of Northern California's mandated entity charged with helping individuals with developmental disabilities deal with their sensory difficulties, and is, thus, responsible for providing care solutions. But should their current treatment really be a viable option?
Radical procedures, like those suggested by employees of RCRC, can actually increase sensory difficulties.
The toenails provide a natural barrier to the toe, and tend to prevent exposure to sensory overload in that general area. Thus, their removal will increase reactivity to sensory issues. Nathan states;
"It seems as if the issue has already sparked a controversy within RCRC. Some of the management are already willing to change, but without additional intervention the issue may blow over." Nathan goes on to say "People should rise up and speak out. A change ought to be made for appropriate sensory interventions and preventive care without the use of these unnecessarily invasive procedures."
For more information about this issue, contact Autism Candles - Lighting the Path - www.autismcandles.com