an autism journey

Archive for November, 2013

Speaking for my son… speaking for my family

Normally, I try to distance myself from the many debates going on among the autism community. There are many to choose from. It seems everyone (even those not impacted by autism) has an opinion. Quite honestly, I just don’t have the time and energy to waste debating these things. My son needs every moment that I can give to him, and that is where my focus lies.

Today, however, I can’t seem to get out of my mind the latest controversy that has so many autism families in an uproar…. A statement made by the co founder of Autism Speaks, Suzanne Wright. On this one, I feel I must weigh in. If you don’t know what I am referring to, you can read her statement on the Autism Speaks website.  http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action   Read if you must, but please do not judge my son or my family by her words.

Since my son’s diagnosis, I have worked hard to bring about autism awareness and acceptance to my family, my friends, my church, my community. I want people to look beyond my son’s symptoms, beyond his verbal skills (or lack thereof), look beyond the hand flapping, the rocking, the verbal stimming. I want people to look at the good in my son, see his positive qualities (there are MANY),  his gifts, his abilities, his love, his gentle spirit. Accept him as he is. He is not to be pitied or feared.

I can only impact my small part of the world. I am not an eloquent speaker, I am not a gifted writer, I am not a doctor, or a therapist. I am just a mom… a mom on a mission. I am not in a position to impact many, but I take seriously my mission to impact who I can.

So, I am completely and utterly disgusted that a woman who is in a position to change the mindset of how people view individuals with autism, a woman with great resources, with great influence, would dare to set back the forward motion of awareness and acceptance that moms like me have worked so hard to set in motion.

Why am I upset? Because, Ms. Wright paints a picture of a child with autism as being someone to fear, running around naked,awake all hours of the night, trying to escape the safety of their parents to engage in all sorts of dangerous behaviors, a child who has no means of communicating, who is aggressive and hurtful to himself and others. She paints a picture of a family who loses everything trying to help their child, of parents divorcing, going broke, living in despair…. Oh wait,  according to her, they are not even living, they are simply existing.

Let me assure you that although my life may be challenging at times, it is a good one. I have been married to my husband for 21 years, we have an amazing teenage daughter and an amazing 7 year old son who happens to have autism. He is a blessing to us. He loves, he laughs, he plays, he sings, he can tell you Bible verses and say his prayers. He knows who God is and knows his Grandpa is waiting for him in heaven. He reads, he has amazing computer skills, and he plays the piano. This is a child who is happy and loved, we are a family who is happy and loved. We may not live a typical life, but it is a life I would not trade for anything….. ANYTHING. I am proud of my son and I am proud of the life I live.

Shame on you Ms Wright. Shame on you Autism Speaks. Millions of people world wide turn to you as their first source of information on autism. You are often a family’s first referral at a diagnosis. I can’t help but feel sick in my stomach knowing that many parents will turn to you and this is what they will read….. I pray they turn elsewhere for a more positive outlook, and I pray especially that individuals like my son never read your statement.

I realize you are trying to raise money for your organization, funds that may go towards helping a future generation, but you are doing so at the expense of the individuals and their families already living this journey. My son’s verbal skills may be limited, but first and foremost, when he is able to, he speaks for himself, and when he is not able, his father, his mother, his sister, his grandmothers, his aunts and uncles….. we speak for him…… not Autism Speaks.

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