Thursday, 06 May 2010

• Unity needed within the Autism Community

   I have been holding my tongue for some time and I absolutely cannot stand it anymore. The ‘infighting’ among the autism community grates at my inner core and I find myself needing to come forth in order to release the charged feelings I am experiencing ... I understand it may not do any good, but at least I will have said my peace.

  At a time when autism numbers are soaring, we need the mainstream folk to become involved. And yet, our own community cannot support one another despite our differences … How, I ask, can we possibly expect others to take a stand and advocate for us, when we can’t do so for each other? It is time to set aside our differences and unite for the greater good of the autism community as a whole.  

  Our children (and adults) diagnosed with autism need support, protection, advocacy, and empowerment as well as other necessities.

  Personally, dare I say, that I actually relate to both sides in my own unique way; the neuro-diveristy and the pro-cure. I don’t think that makes me hypocritical.  I am just a concerned mindful mother wanting the best for her child.

  The nuero-diversity camp promotes that we accept our differences and honor each person in their unique sense of self. Truthfully, that really is the foundation of my personal advocacy group, Exceptional Beyond Labels. I, also, believe that despite any label (autism, aspergers, pdd-nos, ect) that each person behind the label is just that… A PERSON! They are a person not defined by this label, but rather a person defined by their unique individualization... And that person is phenomenal and capable of anything given the proper tools. Autism is not something to be ashamed of, in fact, I believe it is those on the autism spectrum that will make profound changes in the systems that are no longer working in our world(but, that is a whole different blog entry). I believe that all research and programming and legislation should include parents and adults on the spectrum ... I agree that we cannot determine their future without their input!!

  On the flip-side, I find myself praying for a cure and requesting unbiased 3rd party research. I long for a day that the ‘infantile autism’ label that limits my child is shed like the skin on a snake. I am motivated to prove the diagnosing psychologist wrong when she said to us without a blink of an eye that our young daughter would never have a productive career, meaningful friendships, marriage, a college education or independent living. I have read countless books and surf the net to wee hours of the night to discover what others are doing to help their child diagnosed with autism to 'recover', so that I might be able to pull her further into our world closer to a functional life. I have tried diets, alternative therapies, holistic medicine, traditional therapies, and anything else that was within my arm’s reach. I want, like every parent, to have my child have a bright future full of possibilities.

  I don’t do these things to change her core essence, but to remove barriers so that she can have a productive future; to improve her quality of life; to reduce her fundamental frustrations that are demonstrated through a profound expressive and receptive speech delay, an heightened autonomic nervous system response, the sensory and auditory processing complications, a curious eating disorder, awkward socialization skills.... let's not forget that I do this to end the never ending fear of her risk of elopement ending in a catastrophe or to end the nightmares about what will happen to her if her parents were to tragically die or to end the fear that resides in the knowing that if someone were to violate her she would not have the functional words to tell me (and the list goes on) …

  I have come to understand that some cases of autism (possibly more aspergers than infantile autism) is genetically based and hereditary while other cases are more environmental. Our geneticist concluded there was no biological foundation for the autism, yet denied environmental possibilities. That doesn't make sense to me. How can biological and environmental factors both be ruled out? This is a hot topic and has caused some to even proclaim hatred towards a certain celebrity. However, I cannot rationalize for one second how the toxins in the vaccines could possibly be safe in the amounts given to the tiny bodies our child inhabit. Yes, I know that the CDC and FDA have cleared them to be safe but common sense tells me otherwise. (I am not going to elaborate on this as there are many resources out there stating the facts… go check them out). I, also, am concerned that no one is talking about maternal vaccine history and its effects on the offspring she bears or the Rho-Gam (Anti-D) vaccine given to pregnant women with negative blood. If the toxins cross the blood brain barrier during critical fetal nuero-development could that not affect the brain and cause autistic-like symptoms?

  Now, I do believe that the camp that takes this stance should be less cynical and sarcastic in their presentation … tastefulness goes along way. I wonder if a certain publication ever considers that their point of view would be better accepted by mainstream, the autism community, government, and big-pharm if they added a little more class to their presentation. But, their opponents create face book pages like I Hate Jenny McCarthy. So, what do you do?

  This has to stop. We have to have a truce!! We have to say we can understand both perspectives and respect the needs of both parties. We have to stop organizations getting rich off of the challenges our children and adult friends diagnosed with autism face. We have to unit for the common good for all involved regardless of etiology beliefs! We have to unite to promote advocacy, education, safety, insurance inclusion, 3rd party research, affordable early intervention, awareness of alternative and holistic health modalities, resources on self-esteem building, education advocacy and inclusion, elimination of seclusion and restraint, as well as promote things like education for mainstream professionals like the police, firemen, teachers, store clerks, life guards, and public transit authorities.

  We have to put aside our differences for the greater good of our community; a community desperate for answers and desperate for acceptance.

   

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