Posted by: debstake | September 25, 2008

The Cost of Autism

When I speak of costs I am not necessarily referring to a monetary amount. I am referring to the lose of friends and family over the course of the past eight years. I am also referring to the sleepless nights, the guilt, the anger, and the final acceptance of what is. I am also referring to society at large looking down on my son, my family and my parenting skills.

Let’s begin with the lose of family. I have never been that close to my brothers and my sister and after the death of my last parent, my father in 1994 the rift just got bigger. I fault myself as much as I do my siblings. In the winter of 2001 I did however, make an attempt at trying to reestablish contact with them all. Not one of them cared to even try. So I have given up. Rodney’s family is the only family I have left and that is fine by me. Even if that family only consists of his 72 year old mother. My friends on the other hand were much more than they are now. Somehow when JR first got diagnosed I lost these people. I don’t know how it happened to be honest, though I do remember why. One of my dearest friends whom I will refer to as LK here seemed to be the first one to drop away. Many attempts were made on my part to try to keep the friendship going. However, circumstances, both hers and mine made it very difficult. I thought she didn’t want to bother with me anymore because of JR and I told her so. She too was going through a lot of nasty things concerning her personal life. We made peace but our friendship has never been the same.

I am not an easy person to befriend, I know this to be fact. I am very controlling and feel a need to be on top of everything. This “flaw” has been of a major asset for JR’s treatments, education and the like. But it has taken a heavy toll on me and my personal life. I see my son and often wonder if I myself am not aspergers on some level. I know I have ADHD which according to Diane Kennedy author of ADHD and the Autism Connection. is a close relative to the autism spectrum. I have always had sensitivities to bright lights and loud noises. I was never able as a child to modulate my own voice. I remember countless times teachers writing on my report cards: “Can be heard before she is seen.” I have never had the true lasting friendships that last a life time. I doubt I ever will.

All though there is one woman whom I will refer to as SN who I have known and have had a close relationship with since our daughters were in kindergarten (10 years now). Our similarities are very obvious when looking below the surface. Her daughter was diagnosed with (among other things) aspergers and all though our daughters share a deep lasting friendship ours is just as deep and lasting because of the similarities between her daughter, my son and myself. This woman and I are so close that we think the same, often finishing each others thoughts (much like my hubby and I do), and when briefly losing contact will be thinking of each other at the very same moment. It’s kind of spooky but comforting too.

The sleepless nights began when JR was officially diagnosed with autism. But it didn’t last long as there was so much we had to do in order to help him. The guilt reared its ugly head when we made the connection to the vaccines. Even though at the time when JR received his vaccines, we never had a clue what was happening to him, we never heard a peep about serious adverse effects and of course no doctor told us what was up. We trusted the establishment, the drug cartels, the doctors and the government. In other words we put our trust in the wrong people. It was a very hard lesson to learn but one that will never be forgotten, by me at any rate.

The anger came as a result of learning what the vaccines did to my son, my daughter and our lives. I remember there was a time when Samantha was an infant that we wanted to get her vaccinated against the chickpox virus. Apparently, and by the grace of God, she was too young (children then had to be 1 year or older). And equally, by the grace of God she contracted chickenpox at the age of 8 months so the vaccine was never needed. I often wonder if she had received that vaccine if it would have been enough to tip her onto the spectrum. As it is she has distractabilty issues all though her “official” diagnosis is ADHD.

Jr wasn’t as lucky and I fault those in the know now and who knew for years before he was even born, for not letting us know what could possibly lay ahead for my son. Yet at the same time I am so very thankful. JR is still alive and now he’s healthy, he’s intelligent and he’s happy. Some of my friends were not so lucky. Some of my friends have buried their children because of vaccines. The damaged and the dead are referred to as the “acceptable risk” population. Let me tell you, when it’s your child there is nothing “acceptable” about that risk.

I have accepted my son for all his imperfections and I hope he does the same for me. I love him and his sister no matter what. That will never change. What I will not now nor ever accept is the deceit, lies and half-truths that spill out of the mouths of people like Paul Offit, the AAP, the government and those who think that children in a constant state of pain are ok and should be left alone.

I will never again have faith in the drug cartels or this government for what they have done to an entire generation of children. It is one of the reasons we have a claim with the NVICP (national vaccine injury compensation program). That however is a topic for another blog entry.



  1. Lia,

    Exactly that, the amber alert folks will not respond immediately for our kids. That needs to change but I don’t know how to go about it. Any ideas on how to make that change?


  2. I HEAR YOU…. I feel the same way… explain about the no emergency response for PA for autism… sort of like the amber alert? I would love to see that in PA.. I am in york county.. Lia

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