April 26, 2011
As this is the end of “Autism Awareness Month”, I think it is high time to start this blog. I have been wanting to write about this for so long and until now haven’t really found the time or the energy.
This blog will be primarily about autism, mainly about adults with autism and the subgroup of “verbally challenged” and “behaviorally challenged” individuals commonly called “severely affected”, with a special interest in health care for this group.
By introduction, I am the parent of a beautiful young woman who has had autism, the disease, since she was 15 months old. Despite many years of hard work and effort on her part and best attempts on my part, she is unable to live independently and needs 24/7 care, which, for many reasons, I am unable to provide. Her father and I love her very much and she knows this very well. We struggle daily to help her to live a happy and full life.
My primary concern at this point is not what caused her autism or what made it worse but rather what can we do to make her life better. As that task will be made easier as we understand the etiology and genetics of the disease, I fully support all avenues of research. I do not however wish to dwell on vaccines or diet or genetics versus biomedical or whether or not Andrew Wakefield should be sainted or vilified. I also do not wish to discuss the rights of autistic people to exist…this to me is a discussion that my daughter is as yet unable to have. Until she has more communication skills we are concentrating on the basics. For her, the pain and suffering she endures and overcomes everyday completely overshadows any other questions. Yes, at this point I would wish the disease had never claimed her. All her special quirks and personalities would still be there if she did not have pain from her gastrointestinal disorders and if she did not have seizures and if she had not lost her ability to speak. With all due respect to the high functioning or “Aspie” community, the discussion about whether or not autism is a disease to be eradicated or simply a different way of life is, for my daughter, a “moot” point.