Tuesday, December 23, 2014

Self Injurious Behavior, Seizures, Reduced Life Expectancy Are My Son's Severe Autism Disorder Challenges Not Concern Over The Expression #MSSNG

Self Injurious Behavior, a  common occurrence  in some with severe autism, can appear in  a flash and transform a happy, fun filled moment into pain and suffering as it does above with my son Conor.  The very high functioning autistics who do not share my son's disorder and challenges have no right to dictate what autism research will or will  not be conducted,  research that may someday help my son and others with severe autism disorders. 

The world has recently seen the very talented, successful  Jerry Seinfeld "identify"  with autism before retracting his statements. More recently John Elder Robinson and other high functioning autistics got very upset over the use of the expression #MSSNG coined for the Autism Speaks research campaign and demanded that autistics must  dictate the course of autism research.  My son Conor with his severe autism disorder, intellectual disability and epilepsy has no understanding of this high functioning autism outrage.  His problems are more in the nature of the serious self injury engaged in often as set out in the pictures above. 

Today, with the holidays disrupting his routines, Conor engaged in one of his most serious meltdowns in some time hurting himself and the walls and when Dad intervened I felt some of it too. I honestly can't relate to the concern that #MSSNG is somehow an insult and travesty to those with autism disorders not when I am trying to restrain my powerful, 210 lb  6'1" son without hurting him and at the same time protect myself in the middle of a serious meltdown. 

Statements below from the AAP.

American Academy of Pediatrics 
Management of Children with Autism Spectrum Disorders,  (2007)
Statement of reaffirmation  126 (6): e1622. (2010)
Statement of reaffirmation 134 (5): e1520. (2014)

Comorbid severe global developmental delay/mental retardation and motor deficits 
are associated with a high prevalence of seizures (42%)

Health care utilization and costs are substantially higher for children and adolescents with ASDs compared with children without ASDs, and available data suggest that mortality is increased as well. The increased mortality in ASDs is thought to be largely, but not completely, accounted for by the increased mortality associated with mental retardation and epilepsy.


w ford said...

I agree real autism is serious and I have real high functioning autism myself plus nf1 disease. Another thing overlook in autism is gastrointestinal disease which I was hospitalised myself 4 times in 5 years. Real autism means a shorter life yes like in epilepsy that killed my aunt at age about 27.

Karen Maskall said...

Can it possibly be related to something that he ate? I honeslty believe that all foods play a part and I'm sure you have investigated all of this. Ketogenic diet for example has controlled siezures and other so called "fits and outbursts"
blessings with you all

Roger Kulp said...

All I can say is I have been unusually lucky.I have no business being alive at this late date.I have survived countless close calls.Every time I have been out wandering and headed out in to traffic,once into the path of an oncoming train,there has always been someone there to pull me out of the way.One time I was hit by a car,and landed on my back into the street.My injuries were not serious,but I could have broken my spinal column,and been paralyzed for life.As always,when I was wandering,I had no idea. where I was or what I was doing.

I have survived five very acute illnesses,either metabolic/mitochondrial or acute infections,literally coming back from the dead each time.The doctors I see admit there is no one else like me,as far as living this long with all the medical problems I have.I am unique.I do wonder,now that my mito is getting worse,when my luck will run out.

Then there are those,like my sister,who are high functioning,but have conditions like bipolar disorder or clinical depression,who have attempted suicide,and nearly died from a result.As with intellectual disability,and mitochondrial disease,this can be much more severe than the autism itself,something researchers have only begun to recognize in recent years.These conditions like ID,autoimmune disease,mitochondrial disease,or psychiatric disorders cannot be separated from the autism.The autism and the comorbid conditions are all part of the same disorder.Trying to separate them is why neurodiversity goes against everything the science has proven so far.

Most people with very high functioning autism,and no comorbidities cannot see beyond their own narrow experiences.Not only should they not dictate what research should be done,but those of who have experienced the full severity of these comorbid conditions,whatever they may be,need to also see beyond our own families experiences,and admit we are all in this together.