I can clearly remember the day when my daughter was diagnosed with autism. I don’t think words can describe the way my wife and I felt. Our daughter’s (our third child) life and our life was changed forever when our pediatrician told us that she was diagnosing our only daughter Danielle with “Autism Spectrum Disorder”. We were angry, frightened, sad, and frankly pissed off that this could happen to us. We had to mourn the loss of the life our daughter was supposed to have. She will:
- Probably never have a boyfriend and get married
- Never live independently
- Need to be taken of care after our deaths (one of the reasons we don’t sleep some nights)
Health care professionals don’t realize the impact that it had on our life as parents as well. Joanne (my wife) and I mourned the life that we would have. We are never going to be able to spend time travelling the world after we retire, live an easy life and the financial cost of Danielle’s treatments is staggering. Things that are supposed to be easy and fun like going to a hotel or a restaurant are exceptionally unpredictable with a child with autism.
Who Can We Blame
Your first thoughts when your child is diagnosed with autism are usually:
- “Why did this happen?”
- “What caused this to occur?”
- “Who is responsible for my child’s diagnosis?”
You start by blaming everyone. We were upset with our pediatrician because we were thinking that she is an autism specialist so she must diagnose all the kids with autism. We were upset with our other healthcare professionals (multiple physicians, audiologists, speech pathologists) for not listening to us when we said something was wrong with Danielle. We were told multiple times, “I don’t see any signs of Autism in your daughter.” We also blamed ourselves, what did we do that caused Danielle’s diagnosis?
The Power of Information and Misinformation
I have always felt that information is an incredibly powerful tool. The more health information that a person has, the better the decisions they can make about their health. The internet has been an incredible tool to help get the information to the patient to help them make the best health decisions.
If a parent with a newly diagnosed autistic child searches online they will find some great information on autism. Intensive interventions given at a young age can help to improve autistic symptoms in many children.
The problem with the internet is much of the information that is reputable may not look very reputable and some of the information with no evidence looks like it is backed up with science and data. The information can be so conflicting that for most parents it is impossible to decipher what is true and what is not.
What Caused Danielle’s Autism?
- Do I believe the video of the crying mother that tells me the passionate story about how her child was fine until he received the MMR vaccine?
- Do I believe the government agency telling me that the cause of autism is not fully understood based on “clinical trials”?
- Do I believe the medical community that told me that “they did not see any signs of autism in my daughter”? If they can’t diagnose it or identify it, how can their information on the cause of autism be credible?
The answer is my wife and I looked at everything and made an opinion not based on the passion of the message but on the science that backs it up.
The reality is we don’t know what causes autism. The primary reason looks like it is a genetically transmitted condition. The combination of my wife’s and my DNA put Danielle at risk of developing autism. Now that being said even in children with identical DNA (identical twins) one twin can develop autism and the other does not. So there is another factor that “triggers” these symptoms.
What about Vaccines?
Vaccines have been commonly cited as the main reason that children develop autism. Dr. Andrew Wakefield claimed in 1998 that the MMR (measles, mumps and rubella) vaccine was linked to the development of autism in a small study of 12 children. This has caused many parents to believe that vaccines should not be used because they are linked to diseases like autism.
In 2010 this study was retracted and Dr. Wakefield was found to be working with an attorney starting a class action lawsuit against the MMR vaccine manufacturer. He has also lost his license to practice medicine in the UK.
Here are some common thoughts that people think:
- Mercury in the vaccines caused autism. In Canada, we have not used mercury in our routine childhood immunizations for years – Why is our autism rate still increasing?
- Vaccines are linked to autism – Why is our autism rate still increasing when immunization rates are falling?
- Vaccines overwhelm the immune system – I could never understand this as our mouth is full of way more bacteria than a live vaccine. What about the one year old that falls in the dirt and scrapes their knee? They are exposed to WAY more bacteria in the dirt than what is in a standard vaccine.
I Wish it was that Easy
Time has really helped us accept Danielle’s autism. I love my daughter more than life itself. She makes me laugh, cry and smile. I think when you have a child with a disability you start to look at things differently. I appreciate the little things in life. This is something that I will always thank my daughter for. She has taught me to enjoy life with all the bumps and curves because it makes the journey more exciting and rewarding.
I wish I could say that Danielle’s autism was caused by vaccines. You don’t know how much I wish this. To be able to prevent another parent from having to hear the words “Your child has autism spectrum disorder” would be my lifelong dream.
But the reality is vaccines don’t cause autism. My daughter and my three sons are all immunized against vaccine-preventable disease because I can’t bear the thought of having one of my children being diagnosed with an illness that I could have prevented.
Vaccines don’t cause autism and when we find out what does I will be the one of the first to shout it out to the world
Reassurance to Parents
One message I can provide to all parents with a child with a developmental disability is that time is your friend. I never thought that I would accept Danielle’s diagnosis. But over time I have accepted the fact that she has autism.
My daughter is an incredible person. Even with her struggles she adds more to my life than anyone can imagine. She is funny, happy and amazing. Although there are days that her diagnosis brings us down, she usually does something that amazes us and makes us smile. She is my hero!
If a cure for autism came out today, I would pay anything to give my daughter a normal life (including sacrificing my own). But if this cure changed Danielle to not being the fun-loving free spirit that she is today, I would have to think twice.
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- @jendlake thanks so much Jen.Friday, 05.10.13 00:12