SearchingEquilibrium

I am the mom of an autistic child. In the needed learning to be the best mom he deserves I have found also the need to research, to exchange opinions and to learn in this journey doing a path and always searching equilibrium.

Tuesday, May 01, 2007

Blogging against disablism

Hi
As many parents, I did not know about disability until my son was diagnosed with autism. However, these years have been a learning experience about autism and about how to learn to be the best mother my autistic son deserves.
In this journey, I consider that there are many aspects to analyze.

For me, autism in my son has many levels. He has a different genetics than the norm In this sense, this different genetics is an integral part of him. He has also many many medical problems related to the interaction of this different genetics (and genetic expression, transcription, proteomics, metabolism and biochemistry) with the environment. In this sense, and I do not know how much, autism is partially something he has. And in this sense, it is not a different way of being for me.

However, even if I do not know exactly how much is the relative contribution of each, he learns differently, he perceives the world different and he has special needs (medical, emotional, educational and sociological) that requires accommodation, acceptation and understanding.

Today, is Blogging Against Disablism Day, in which many people
“write about disability and rail against the discrimination that disabled people continue to face...from discrimination in education and employment, through health care, parenting, family life and relationships, as well as the interaction of disablism with other forms of prejudice”.

In my personal experience, one very painful aspect to face was the health care that my son needed and it was extremely difficult to find, for now. Each age will bring its own challenges. Employment is very related to adult life, but all the other aspects will affect each area of my son´s life. And for me, the main aspects to consider have been prejudice, ignorance and preconcepts, because they affect every area of my son´s life and they lead to discrimination.

Only with
-a different view to autism from the scientific/medical area to all aspects from testing to treatment of concomitant medical problems to ASD diagnosis
-a different view from the educational aspect, with another information and training of special and non-special teachers and authorities in educational system
-a different interest from the sociological/political area
-a different understanding from the overall importance of family life and relationships without preconcepts about what autistics can/can not or do/do not feel /think/learn or share
-a higher importance given to parents concerned about their autistic children health,
-a different consideration about what autistic adults think/feel about their condition at all levels and what they have to say about all the medical/scientific/political/educational/sociological/emotional aspects
-and a different effort to have a common place of understanding of all involved prone to do it,to hear and to learn (doctors in practice, researchers, politics, parents, autistics of all ages)
a real sociological change will be possible.

To this goal, it is of paramount importance IMO the understanding that the dignity should be respected in every human being-autistic or not.The possibility of the experience of life in society as a fruitful and grateful experience-even under own rules in terms of accomodation and special needs-should be guaranteed, being part of a family /community with the acceptation and understanding of the differences in cognition/neurology as part of the human variation, considering different needs at all levels, and based on love that each human being deserves because his/her existence.

I want to think (and hope) that this kind of Future is possible… and from my humble place I will do my best to help to construct it.

2 Comments:

  • At 2:45 PM, Blogger mcewen said…

    More than 'possible' = Likely
    Best wishes

     
  • At 4:12 AM, Blogger Dr.Rutledge said…

    Hi Maria,
    I'm an academic physician (formerly at Harvard and Stanford) who found your blog while looking for the best health writers. I think your writing is great! I would like to feature you in the Autism Community on Wellsphere, a top 10 health website that has well over 2 million visitors monthly.

    If you would like to learn more, just drop me an email to Dr.Rutledge@wellsphere.com

     

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