Autism: Debi's Story
By Debi Tyree Haney
I had a normal pregnancy with my second daughter, the only exception being that I was diagnosed with gestational diabetes at week 34 of pregnancy. In July of 1999 I gave birth to a 7lb, 13oz baby girl named Allie. For the entire 9 months following her birth, she cooed, babbled, reached out, and made all her major developmental milestones within appropriate time frames.
At 9 months old she contracted chicken pox. Two weeks after the onset of her illness, while still scabbed over, she was given a hepatitis B vaccine. Within two weeks, she rejected my breasts for nursing, refused all foods but a handful of hard, crunchy, white foods, stopped pulling up to stand, stopped making eye contact, and virtually stopped doing anything but laying on her back with her feet in the air most of the day.
While I made multiple trips to the pediatrician to complain about what she was not doing, each time I was met with excuses and was basically blown off. When I complained at 12 months that she appeared to be blankly staring off into space, the pediatrician asked me if it was getting worse in frequency or length. As a layperson, seeing her do this at all was pretty unsettling.
Unfortunately, again, I was blown off. Finally at 18 months of age, someone at church asked me if we’d had her hearing tested. At that moment, I knew I was no longer just a paranoid parent and called the pediatrician while crying to insist that we test her for something, anything. I even shared my fears that it may be autism, which terrified me. By 18 months, she was beginning to show some of the characteristics of autism that I had read about on the internet; remember, in 2000-20001, there still wasn’t a lot of info on autism and younger infants.
On July 16, 2001, at 23 months old, we received the diagnosis of Autism Spectrum Disorder. Since that time, we have found biomedical treatment to be extremely helpful for Allie. She has lab tests which confirm a plethora of physiological anomalies including gluten sensitivity, markers of mitochondrial disorder, immunological anomalies, gastrointestinal issues, and the list goes on.
Her growth rate stayed at the 50th percentile mark until she was 12 months old and she began to drop off the growth charts. At 9 years-old, she is still below the first percentile in height. She has normal genes, as confirmed by electrophoresis and microarray testing from two different geneticists.
Today, Allie is doing far better but still has a way to go. She is now verbal, and loves to play with her 11 and 6 year-old sisters. Her favorite activities are art, hiding our cats in her bedroom, and playing Super Mario Brothers on her sisters’ Nintendo DS. She’s still saving up her allowance money and/or waiting on her birthday for a DS of her own.
She is essentially on grade level. She reads her Bible independently and talks about God and Jesus. When she’s sick with respiratory or gastrointestinal issues, which is often, she tells me she is dying and tells me what her funeral will be like.
If I could tell society anything, it would be that we have to come together to find the cause of autism, to provide support and treatment for those with autism and their families, and we have to embrace those with autism as valued members of society.
Those with autism deserve quality health care as much as everyone else. Those with autism deserve education as much as their non-disabled peers. Those with autism have a right to live full, independent lives as much as any other adult.
We have to stop arguing about whether or not vaccines cause autism, and accept the fact that there is a large body of evidence showing the possibility they do, and commit ourselves to finding the answer. We need to stop ridiculing those who seek answers. As Dr. Healy, former NIH director, has suggested, we should not be afraid to seek the answers because we fear what we may find.
We have to respect parents who live with autism and the many challenges that can come with it. We need to celebrate with parents for the incredible blessings their child or children with autism bring to this world. Those affected by autism need faith, hope, and love, with the greatest of these being love.
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