Raising children can be stressful. Parents and children alike can no doubt agree with that. There is little doubt that parenting children with autism often encompasses unexpected challenges. How parents cope with the diagnosis and the complications of navigating the treatment choices matters to the overall well-being of the family and the child. How they deal with their child specifically matters more, though. It's my personal belief that sites that cater to the negative and to the woo, all while making false promises of cure and recovery, are dangerous to the emotional well-being of both the parents and the children. All you have to do is spend an afternoon thumbing through the various AoA posts and comments to see that these folks feed each others' maladaptive coping mechanisms and work to make their positions all the more extreme. All you need for proof of that is to track back individuals' comments through time and you'll see that. Stories shift, positions change, and outright denial occurs when you attempt to point that out. Some bloggers even go back and alter their earlier posts in order to keep it in line with their newer positions. The cognitive dissonance must be deafening over there.
The internet, though, despite potential pitfalls, is a tremendous tool for parents. As we've seen with specific sites like AoA, GenRes, TACA, Safeminds, ChildHealthSafety, as well as personal blogs, forums, yahoo and google groups that cater to the woo, there is an enormous possibility for parents to obtain woefully inaccurate information and to find themselves in online communities that cater to negative coping mechanisms and only make the situation worse for parents and children alike.
Sabo and Lorenzen (2008) conducted a search of reliable, health-related websites dealing with autism information so that parents newly dealing with an autism diagnosis for their child would be able to obtain reliable additional information. Ironically (for the anti-vaxxers who read this), the first website that Sabo and Lorenzen provide is the CDC's.
While conducting their literature review, Sabo and Lorenzen found that there were numerous difficulties with the internet: there's a lot of crap out there and most Americans are not very well educated on health matters: "Coupled with the inconsistent quality of information found on the Internet are problems with low levels of health literacy in the United States" (Sabo and Lorenzen). Well, let's be honest, they could have gone to one site (AoA) and realized that, but they didn't: they looked at other studies that showed that Americans aren't well educated in health-related matters.
In order to work around the poor literacy relating to health issues and that wealth of Jenny McCarthy-style google scholarship, Sabo and Lorenzen used stringent criteria when collating their list : "In order to ensure the quality of listed sites. Web sites reviewed for inclusion in this list met two criteria: they have government (gov), educational (edu), or organizational (org) domain names, and they are listed in either MedlinePlus or the Medical Library Association's (MLA) list of "Top Ten Most Useful Websites," or they were linked from a MedlinePlus or MLA-recommended site." That would have to chap the AoAer's asses even more than the CDC being the number one site.
Sabo and Lorenzen did not condemn all private consumer sites, though: "While acknowledging that parent-hosted sites, support groups, and some commercial sites can be extremely helpful, none of these Web
sites is included in this listing."
Medline Plus (link updated here) was second on Sabo and Lorenzen's list of sites for parents to go to. And the AAP was the first health web site listed. Oh, my, but this journal article would just really put the AoAers in a tailspin, wouldn't it?
Organizational websites was led by the Autism Society of America (an organization I don't recall looking at) followed by Autism Speaks. Ah well. This tells us, at least, that we've a lot of work to do to as a community to create an organization that rivals Autism Speaks. With all the money the organization has behind it, I'm not sure what can be done to minimize their influence, but tilting at windmills is a grand thing, and Kathleen and I (and T and L) will keep at it, as I know will many of our friends.
Online websites for information and online networking are potentially important tools in helping families cope (albeit it could go towards positive coping or maladaptive coping depending on the quality of the information these families access and the types of supports they find). More important for daily functioning, though, are the types of coping mechanisms parents adopt. Altiere and von Kluge (2009) note that families with children on the spectrum "must make significant adjustments to cope and function adequately." They continue:
As surely as the functioning of the family affects the child, the development of the child affects the functioning of the family.
Interestingly enough, paraphrasing Seligman and Darling's 1997 work Ordinary families, special
children (2nd ed.), Altiere and von Kluge write:
children (2nd ed.), Altiere and von Kluge write:
When a family is able to draw upon adequate resources and if they perceive the situation as manageable then the stress of raising a child with autism may never lead to a crisis.
I don't doubt that many of the bio-med parents and AoAers place undue stress on themselves and view their resources as inadequate because they pursue expensive quack treatments. In addition, even parents following traditional therapies like ABA may place themselves into situations where they feel as if they do not have the adequate resources, since ABA therapy can cost upwards of 50 grand a year. It is an unnecessary and unrealistic burden that parents are placing on themselves, this pursuit of expensive therapies that are privately funded as they drive themselves to a fever pitch in order to recover their children.
What matters is not the number of expensive therapies you throw at your child, but the quality of the interactions you give him or her. Being with them, interacting with them, talking and playing with them while working on mastering rudimentary skills requires a bit of know-how, but even more importantly, it requires time and commitment. Parents who are willing to invest that time and effort with their children can make a huge difference in their children's and their own lives.
If parents were given basic information and the time with the appropriate therapists to work on tasks they could do with their children, stress could be reduced by instilling a sense of capability to deal with the challenges at hand.
Part of that would include looking at the family dynamics, as well. Altiere and von Kluge found, somewhat unsurprisingly that :
Individuals who rated their family as highly cohesive implemented effective coping behaviors most often in difficult situations.
They also found:
Another significant finding was that individuals who rated their family as enmeshed, connected, or separated were significantly more likely to use reframing (viewing conflict or crisis in a positive manner) to cope with difficult situations than disengaged families.
Working to find the silver lining, so to speak, is easier if we feel we have others with us to support us, if we feel we are not alone.
Pottie and Inghram (2008), in looking at various coping mechanisms in parents with children with autism found that:
On average, after accounting for personality and contextual factors, higher levels of daily positive mood were predicted by Problem Focused, Social Support, Positive Reframing, Emotional Regulation, and Compromise coping. It was also found that decreases in daily positive mood were associated with Escape, Blaming, Withdrawal, and Helplessness coping" (p. 861)
Practical implications for this would be for diagnosticians to also assess the parental coping mechanisms when an autism diagnosis is made for a child and to work with parents to implement effective training on more adaptive coping mechanisms.
It's not enough to hand parents a confusing and often scary diagnosis. Those who do so need to arm parents with the right information and with the right tools. Parents shouldn't have to ever feel that autism is an "empty suitcase," "an empty guidebook," or "a thief." Far worse than this one mother's belief that autism was this and worse were the comments that cemented this opinion, not only for this mother writing and those commenting, but the potential that parents dealing with a brand new diagnosis had to read things like this:
...has been suffering a long and sometimes horrible journey with her child due to the HORRID DISEASE of Autism. YES IT IS A HORRID DISEASE for so many children and their families.
Not every parent will be reached, as all too many people prefer to dwell in darkness and misery and to bring along as many people as they can with them. I'd venture that the AoA loyalists and people like them posting to various bio-med and mercury militia boards are for the most part unreachable. They are not interested in learning more adaptive ways of coping. They certainly aren't interested in reframing their situations.
So, we can acknowledge that we will not reach everyone without giving up hope of being a light for those beginning the journey with their children. We can focus on helping arm others with the tools to cope adaptively so that their lives and their children's lives will be the better for it.
Altiere, M., & Kluge, S. (2009). Family Functioning and Coping Behaviors in Parents of Children with
Autism. Journal of Child & Family Studies, 18(1), 83-92. doi:10.1007/s10826-008-9209-y.
Pottie, C., & Ingram, K. (2008). Daily Stress, Coping, and Well-Being in Parents of Children With Autism: A Multilevel Modeling Approach. Journal of Family Psychology, 22(6), 855-864. Retrieved from Academic Search Complete database.
Sabo, R., & Lorenzen, J. (2008). Consumer Health Web Sites for Parents of Children with Autism. Journal of Consumer Health on the Internet, 12(1), 37-49. doi:10.1080/15398280802081436.