They Blinded Me with SCIENCE

By Lisa Ackerman

science

In 1998, when my son was first diagnosed with autism, I was one of the early internet subscribers. The internet was just born and I would dial in. I would hear the loud squawks of my modem and would then start looking at research and treatments for autism. It was a desert with little information and what seemed like a very small amount of research. My initial thought “apparently autism does not affect enough kids to have any research done?” This was when autism affected 1 in every 2,500 children. Back then, the number of published papers on autism was approximately 4-5 summary pages on Pubmed.

The good news is since 2005 more research has been completed for autism than all previous years combined. Pubmed is a wealth of information. I now spend 5-10 hours per week looking at new studies. (All the studies reference below come from the great resource Pubmed.)

The bad news is the list of studies. Some include innovative, provoking thoughts and hypotheses that warrant further research. I don’t know what to say for many of these studies. First, I wonder “are they joking?” Then, I realize most of these studies do not apply to my family. Many do not apply for the 31,000 families TACA serves.

Here is the list of studies for your review:

1) Proximity to freeways increases autism risk, study finds

2) Children Born to Obese Moms May Face Higher Autism Risk: Study

3) Older fathers may increase autism risk for grandkids

4) Older Fathers Linked to Kids’ Autism and Schizophrenia Risk

5) Flu During Pregnancy May Be Linked to Autism Risk

6) Women abused as children more likely to have children with autism

7) Prozac-Contaminated Drinking Water May Be Link to Autism

8) Antidepressant use in pregnancy may raise autism risk

9) Shorter Gap Between Pregnancies Linked to Increased Autism Risk

10) PCB Exposure May Increase Risk of Autism

11) Month of Conception and Risk of Autism

12) Epilepsy Drug Linked To Increased Risk Of Autism

13) Smaller babies at greater risk for autism, study finds

14) Smoking during pregnancy may increase risk of autism in children

15) Older mothers’ kids have higher autism risk, study finds

16) Autism Risk Increases With Exposure To Air Pollution

17) Maternal dietary factors and risk of autism spectrum disorders

18) Prenatal inflammation linked to autism risk

19) Pesticide Exposure and Risk of Autism

20) More Evidence Vitamin D May Reduce Autism Risk

21) Children who live in the U.S. Northwest’s wettest counties are more likely to have autism

22) Folic Acid Might Lower Autism Risk

23) Both maternal and paternal advanced age increases autism risk

Please note that this is not an original blog as others have written about this topic before. What I have attempted to do is to update the list of studies and find the medical reference for future use. I want to express my thoughts as a parent (not as a researcher or doctor) living with a child diagnosed with autism.

Many parents have written about the pain of an autism diagnosis and leaving the doctor’s office with no advice or referrals for help. Parents usually drowning in tears, wondering: “What happened? It was all going so well.” Something is not right. Something happened. This is why we look towards science to find answers.

I am often asked by friends and people I meet if I noticed the signs of autism in my son early on. I can honestly say I did not. Some ask me why I am so active and why TACA got started. The answer is simple: “My life with my child did not start this way. Jeff’s life did NOT start this way.” Regression was excruciatingly painful and horrible for all involved. I can only imagine how it must have felt for Jeff and for many kids who live through it. The treatments available to help with autism symptoms can work!

I often wonder, if my child was born with a medical condition or had a devastating, life-threatening diagnosis, would I feel and act differently? While some families report their child had symptoms of autism since birth, a very large group of us watched helplessly as our children disappeared into autism.

Parents like me are so vocal because the regression and loss of skills was dramatic. We are so loud because we need to be heard. We want to scream: “It didn’t start this way. This is not where we started. PLEASE NOTICE WHAT IS HAPPENING TO OUR CHILDREN. Please help.”

We hope science will lead the way towards answers and treatment. We would like science to incorporate what parents have observed. Some families are solely focused on the CAUSE (which I would like to see). I would also like increasing attention on TREATMENTS until science finally catches up to meet all our needs. Medical issues that plague individuals with autism are very treatable. While I know science someday will lead to identifying sub-types and cause, I don’t want parents to wait for that day to happen. Families can utilize qualified physicians that will run standard tests covered by insurance to drive positive change. Science will someday be the focus and explain the cause. In the meantime, I cannot wait around, and I don’t suggest you do so either.

I am grateful that there are treatments available for autism. For some families, their child suffers from a terminal condition. At least with autism, we have some best practices to guide us and provide positive outcomes (1.) There may still be much to learn and understand, but at least we have options. Options are always a good thing for any issue that is faced.

Science has a way of blinding, distracting and sometimes providing meaningful steps forward for autism. It’s the studies that call me fat (which I am not,) my husband old (which he wasn’t when my child with autism was born,) calling me abused as a child (which I wasn’t,) accused me of smoking (which I didn’t,) having a shorter gap between my children (which couldn’t be longer: it is 14 years,) and having drugs while pregnant (there were none) along with many other theories that just sound ridiculous!

What’s needed is more research in the areas that drive treatment and answers for families. Not more distractions parents need to dispel in repeated conversations about autism from stories about studies in the news that makes me laugh so hard I want to cry.

Article References

1) Best Practices for Families http://www.tacanow.org/family-resources/autism-journey-blueprints/

Science References

1) Proximity to freeways increases autism risk, study finds

http://www.ncbi.nlm.nih.gov/pubmed/21156395

http://www.ncbi.nlm.nih.gov/pubmed/23495194

2) Children Born to Obese Moms May Face Higher Autism Risk: Study

http://www.ncbi.nlm.nih.gov/pubmed/22492772

3) Older fathers may increase autism risk for grandkids

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2848579/

http://archpsyc.jamanetwork.com/article.aspx?articleid=1666654

4) Older Fathers Linked to Kids’ Autism and Schizophrenia Risk

http://www.ncbi.nlm.nih.gov/pubmed/21116277

http://www.ncbi.nlm.nih.gov/pubmed/21703435

5) Flu During Pregnancy May Be Linked to Autism Risk

http://www.ncbi.nlm.nih.gov/pubmed/23147969

6) Women abused as children more likely to have children with autism

http://archpsyc.jamanetwork.com/article.aspx?articleid=1666655

7) Prozac-Contaminated Drinking Water May Be Link to Autism

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3368908/

8) Antidepressant use in pregnancy may raise autism risk

http://archpsyc.jamanetwork.com/article.aspx?articleid=1107329

9) Shorter Gap Between Pregnancies Linked to Increased Autism Risk

http://www.ncbi.nlm.nih.gov/pubmed/21220394

10) PCB Exposure May Increase Risk of Autism

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3404671/

http://www.ucdmc.ucdavis.edu/publish/news/newsroom/6501

11) Month of Conception and Risk of Autism

http://www.ncbi.nlm.nih.gov/pubmed/21543984

12) Epilepsy Drug Linked To Increased Risk Of Autism

http://www.ncbi.nlm.nih.gov/pubmed/21767826

13) Smaller babies at greater risk for autism, study finds

http://www.jpeds.com/article/S0022-3476(12)00494-5/abstract

14) Smoking during pregnancy may increase risk of autism in children

http://www.ncbi.nlm.nih.gov/pubmed/?term=smoking+pregnancy+autism+kalkbrenner

15) Older mothers’ kids have higher autism risk, study finds

http://www.ncbi.nlm.nih.gov/pubmed/22525954

16) Autism Risk Increases With Exposure To Air Pollution

http://archpsyc.jamanetwork.com/article.aspx?articleid=1393589

17) Maternal dietary factors and risk of autism spectrum disorders

http://www.ncbi.nlm.nih.gov/pubmed/23098794

18) Prenatal inflammation linked to autism risk

http://www.ncbi.nlm.nih.gov/pubmed/23337946

19) Pesticide Exposure and Risk of Autism

http://www.ncbi.nlm.nih.gov/pubmed/22534084

20) More Evidence Vitamin D May Reduce Autism Risk

http://www.ncbi.nlm.nih.gov/pubmed/23070790

http://www.ncbi.nlm.nih.gov/pubmed/22898564

http://www.ncbi.nlm.nih.gov/pubmed/20592795

21) Children who live in the U.S. Northwest’s wettest counties are more likely to have autism, but it is unclear why, U.S. researchers reported on Tuesday.

http://archpedi.jamanetwork.com/article.aspx?articleid=380363

22) Folic Acid Might Lower Autism Risk

http://www.ncbi.nlm.nih.gov/pubmed/23403681

23) Both maternal and paternal advanced age increases autism risk

http://www.ncbi.nlm.nih.gov/pubmed/17404129

thomas_dolby-she_blinded_me_with_science(1)

Special thanks to TACA Super mom Michelle Moor in Connecticut for helping me update the list on the science reference articles.

7 Comments Add yours

  1. Pam McKeon says:

    Thank you Lisa for this post, I certainly can relate and wanted to take you back just a few years to my era with my autistic daughter, where the “refrigerator mom” was about the only thing on the list and did you use drugs in the 60’s?

    I knew this did not apply to me and recall vividly the decline in my daughter after her MMR vaccination.

    Everything I did to help her was not conventional back then, but it did help, and 30 years later I am still keeping on. I am a Veteran of War on Autism. Yet, 30 years later, the government is still side stepping it and not taking responsibility.

    Meghan’s Mom

    Sent from my iPad

    1. God bless you Pam and all the moms who went before me. I have no words but thank you for all your ground work up front. I am so glad that the refrigerator mom theory was dispelled by Dr Bernard Rimland. There are so many people to thank.

      Yet we have so much work to do. We have a lot to accomplish to help families and drive answers for our kids. I will keep working.

  2. The more disinformation and bogus studies that I see, the more obvious it becomes that “they” know it’s something in the vaccine program. There is nothing that will change my mind at this point.

    …but I’m still waiting for the day that the CDC blames autism on aliens. Because we really do need better sci-fi movies.

  3. I got goose bumps as you described the regression and the urgency! Thank you for putting this important information together! (and thanks Michelle too!) Christi

  4. Renee' Mohr says:

    Thank you for this post Lisa. I am one of those moms that asks was it the medicines I was taking for my seizures that caused autism? Why are the treatments for autism not covered by insurance? I know that some are, but most are not. When will the MAPS drs, full lab work, supplements, etc be covered? We are making head way, but the urgency is still there!
    Thank you to you, your family and staff for everything you do. Mason’s Mom

    1. Not sure Renee’. Talk to your doctor or look on PubMed to see if there is a study.

      Most of the MAPS doctors labs and treatments are covered. The insurance best practices document will guide you https://www.tacanow.org/family-resources/health-insurance-coverage-on-a-budget/

  5. jnation123 says:

    I am one of the few who noticed the signs when my son was six months old. He is nearly 11 now and we have fought every day to finally get a diagnosis this year. Despite begging for help over the years we hit every brick wall. Like yourselves we took things in to our own hands and changed careers to work with children and adults with Autism and this has helped us help him. We are lucky in the UK that there are schools who love and nurture our children and I am lucky to work in one and have access to professionals anytime. One day our children will be heard through our voices.

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