How Autism Parents Feel About Studies On Causes: Guilt, Frustration And Hope

Another study just came out about the causes of autism, a small one that found a link to differences in the brain that emerge during pregnancy. Reported in the New England Journal of Medicine, the study was small and “exploratory” and examined brain tissue from a group of children who had passed away. Those with autism were missing key genetic markers within the brain’s cortex.

This is the latest in a growing number of studies on the causes of autism that have recenty popped up in my Google feed. In the last couple of months there’s been a study in The Lancet with a call to action about reducing industrial chemicals connected to autism and ADHD, and a major one from University of Chicago scientists linked boys’ genital malformations and autism, which points to an issue with environmental pollutants. Another one in The Journal of Pediatrics found that delivery complications for premature babies, including respiratory distress, may contribute to an elevated chance of developing autism later.

There’s also been some news about advances in treating autism, including one study in the journal Neuron that showed low doses of drugs used to treat anxiety symptoms can work with children with autism. A study found cognitive behavioral therapy can help with ASD during playtime, while a different one found dance therapy could be of benefit.

Approximately 1.4 billion was spent on autism research between 2008 and 2012. That’s good. But, as others have noted, many, many studies have looked into genetics and brain imaging. Is enough research being done for kids and adults who already have autism? With the start of National Autism Awareness Month today, more studies will be released. I asked autism parents on Facebook how they feel about studies on the causes of autism. Some of their responses:

“Spring has sprung, which means the CDC and medical journals are releasing new findings and frankly, they burn my eyes. I can’t not read them, because as the parent of a child with Asperger’s I feel it’s my responsibility to be well-informed. At the same time, reading flimsy new ‘theories’ often leaves me depressed and eating my way through a box of Cheez-its…. Humans need context in order to understand why things happen. Focusing on the causes gives a lot of us something more tangible to try and wrap our heads around. It absolutely gets to me, especially when said ’causes’ point to errors pregnant mothers would never have known they were making, or would never have been able to prevent.”—Pilar C.

“The cause doesn’t help me now. I want more research on medications that will help my 9-year-old son have a better life.”—Rachel P.

“Anything that dispels the notion of vaccinations and autism is helpful to our society. I say this as a parent of Sophia, a six-year-old with autism.”—Campbell S.

“We really do need to find a cause. However, as a parent of a child with autism, I often have that guilt feeling every time one of these studies comes out—like I ate something wrong, or I didn’t do something right…the ‘bad mommy’ feeling comes out again. I wish more studies focused on therapies that are helpful to people with autism so they could actually help, and not just make me feel guilty.”—Melissa M.

“I think the focus on the ‘why’ is fear based. I think the answers are only comforting to non-autism families who can feel relief that those things don’t apply to them, and that for the time being big, bad autism isn’t going to come claim their children. I’d like to see more work put into providing services. It’s hard to feel like I’m the only one fighting for my children (I have two on the spectrum). Our insurance company should cover therapies, but they just don’t. I usually ignore the studies, and I seriously dread April and all the ‘awareness’ campaigns.”—Carrie V.

“I think it’s important to find the cause, which I suspect is causes, to slow down the epidemic. But politics and corporate sponsorship need to stay out of the equation so that real progress can be made.”—July J.

“What would I rather see instead of all this research focus on prevention? Help for those living with this right now! It’s so hard fighting for services for kids, especially now with the new DSM changes making it so many lose their diagnosis, let alone adult autism services…. I understand the desire for prevention but I feel like that takes precedence over helping autistics and families who exist now, and I wish that wasn’t the case.” Maya B.

“I want better funding. I want a national push to encourage students to choose autism services as a career…. I am done with the causes aspects.”—Laura S.

“My son is 7 and has severe autism. He is non-verbal. I do read the new studies when they come out, but rarely think about the cause of Henry’s autism…. I do think the constant new studies and panic add an extra stigma to the issue that autism parents don’t need. It seems as though our society and our generation of parents fear nothing more than having a child with disability. Maybe we should do a a study on that.”—Lori K.

“We work so hard to dispel myths and create acceptance. Then April comes around, a new study is released. You know, ‘Scare people to raise money for autism month?’”—Marj H.

“Research studies don’t stop any parents from doing what’s best for their already diagnosed kids. But as a mom who’s knee deep in classic autism, if there’s something they discover that could show the cause(s), why wouldn’t I want other future parents to know that kind of info. I mean, whether it’s something that can be helped, or not. It’d be nice to have the mystery unveiled. It’s our job as parents to embrace, encourage and support our kids the way they are. But the studies and research in NO way interfere with that.”

“I’m not really sure how it happened matters as much as making sure that our children have access to services once they are diagnosed. Right now my focus is what are we going to do, and not just me as a parent, but we as a community, as a country.”—Janis M.

From my other blog:

Image of autism puzzle via Shutterstock

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