Of Stories, Questions, and Mistrust

Some time ago I published a piece about the new statistics that show that 1 in every 110 children in the United States is on the autism spectrum. Within the week two different people suggested that we should try the Gluten Free Casein Free (GFCF) diet for our daughter. While I respect people who have made that choice for their child's treatment plan, it has never seemed to fit our particular situation. Nonetheless I decided for the purposes of writing this blog I should perhaps do more research into that approach. I am just at the beginnings of my investigations, but it seems I am looking into this just as the controversy has reached a new peak.

Late last week (Jan 28) a British medical board chastened Dr. Andrew Wakefield who initially published a study finding a link between the Measles Mumps Rubella (MMR) vaccine and the occurrence of autism. The board found a variety of ethical problems with his study. The vaccine is generally given around 18 months of age when some forms of regressive autism appear. This form of autism is particularly devastating because the child has often been completely on track developmentally - walking, talking, socializing, and then these skills diminish and the parent feels they have "lost their child" to the disorder. I cannot imagine how heart-breaking this experience must be. In our own story we can see symptoms of sensory processing problems and motor skill issues back to newborn days. It seems to be the way our child was wired from the beginning, which doesn't make the symptoms any easier to handle, but we have never known her to be any other way. People who suspect that the MMR vaccine (or others) are a cause of autism are often proponents of the GFCF diet as well as other biomedical interventions (supplements, detoxification treatments, hyperbaric oxygen, etc.) Generally they also see clear signs of intestinal distress in their children - irregular bowel movements, yeast infections, abdominal pain, internal bleeding, etc. We have seen none of these for our daughter, which is the main reason we have not pursued any special diets.

Later in the week (Feb. 2) the scientific journal, Lancet, which originally published Dr. Wakefield's study, retracted the article because of the review panel's findings. You can read the explanation for their retraction here. The bottom line is that the British review board and the Lancet are calling into question the causal link between the MMR vaccine and autism.

That will not be the end of the story. I've already seen comments on other blogs from individuals who are convinced there is a link. They see ethical problems on the other side of the issue, claiming that investors or relatives of investors in the vaccine industry are sponsoring all of the studies that seem to show that vaccines are safe. They view Dr. Wakefield as a martyr of the vaccine machine. "But wait," replies the vaccines-are-safe-crowd, "Dr. Wakefield was invested in a single Measles vaccine and his study supported the use of single vaccines instead of the triple shot, so his study is unethical in that regard, too." Then there are the lawyers for both sides who stand to profit no matter who is right...

I don't honestly know what to make of all of it, which is why I'm reading more. For us the MMR/immuno-neurological storyline doesn't seem to explain our daughter's autism. I do believe that for the vast majority of children vaccines are safe. After discussing vaccine concerns with our pediatrician we proceeded to vaccinate our twins, albeit on a slower schedule and being sure to avoid vaccinating if they were recovering from an illness. I go back to wondering if what we currently call "autism spectrum disorders" aren't really several different disorders that manifest in similar symptoms but have different root causes. There is no other way my logic can explain such different storylines from parents who in the end just want answers, and help for our kids.

Sadly when the answers come I'm not sure we'll recognize or trust them because the community seems so deeply divided over this issue. It reminds me of political or "religious" debates because neither side trusts the other sides' sources, and everyone spends more time defending their point of view than digging down to the crux of the matter. I think we need a wake up call in that regard. Remember the statistic that started this journey for me in the first place? 1 in 110. Our school systems are overwhelmed, our social services are stretched thin, parents who try to meet the gaps the schools and social supports can't cover are fraying at the edges, and the children are falling through the cracks. We can and must do better than this...for our kids.

Health Care Reform? Really?

I have been staying away from the whole health care reform debate. As much as it is a hot button topic these days, I do not intend this space to become too politically charged. I know there are good people who firmly believe they're right on both sides of the issue. I did encourage you (as some of those good people) to get involved in the process and make your voice heard. However, I have been seeing this headline in numerous venues, so I think it must be a real problem regardless of your political stance. "Plan to Restric Health Accounts Will Hurt Disabled." In case you are worried about bias, you can read another version of the story on The Examiner.com. Basically it reads the same. Parents of special needs children who use their Flexible Spending Accounts (FSA)to cover education and other treatments that are not covered by medical insurance are going to have this tax shelter stripped away for all but $2500 per year of their expenses. This is only one small aspect of the Health Care Reform that our leaders are now considering. Given that they're supposedly "fixing things for those who are currently burned by the system" one can only hope that they'll take one look at this specific "reform" and drop it like the bad idea it appears to be. Evidently the reformers worried that people racing to use up their FSA funds by the end of the year (a requirement of such funds) contribute to "over-consumption" of medical treatments that health care reform is supposed to be addressing. They decided to cap the funds at $2500 so that people will only over-consume $2500 worth of medical care by the end of the year. Since most people already self-limit their FSA to $1500 it seems like kind of a moot point, unless you happen to be the parent of a special needs child who maxes out their FSA every year to help pay for out of pocket treatments (which I hear can be not just elective therapies but also medically necessary procedures). Suddenly $2500 is just a drop in the bucket. Special needs families have enough hurdles to get over in an ordinary year without having the government make poor choices like this one. If you're not already involved, it's time to get involved. There are other aspects of the reform being considered that might be more compelling...this one just seems the most obvious reason to put the brakes on the whole process and really think about what we're doing. Really!

Autism Health Insurance in New Jersey

In these heated health care reform debate days, I found this article quite interesting. Several states are putting regulations in place that require insurance companies to provide coverage for diagnosing and treating autism. I found this link for a list of states that already have some policy on this issue. It is more than a year old, but has some good information. Aside from the diagnosis process being so subjective and confusing, the lack of coverage for diagnosis and treatment is my biggest frustration with the medical aspect of autism. We are now assured that autism is understood to be a medical problem; it is diagnosed, generally, by people with an M.D. after their name, and yet medical insurance providers duck responsibility. Their subscribers have paid premium upon premium assuming that if some devastating diagnosis ever came their way they would have insurance to help handle it. I am generally not one to ask for government intervention, and the more I hear about the current health care reform proposals the more frightened I become. However, I am no fan of insurance companies either. I suppose the thought of covering the medical needs of children who require therapy in several different domains over years and years due to a condition that is increasingly common and ill-understood leaves the executive boards of insurance companies shaking in their money-grubbing boots. I wonder if they could consider how it feels to face that same scenario as a parent with an average income, other mouths to feed, and the nagging feeling that the number of people on your side is small indeed. We know that children with autism do better with earlier and more intense intervention. In the end the early investment in therapy will probably save money down the line, but I'm not sure this is how they do the math. In any event, this is a topic that I'm going to be keeping my eye on.

Health Care Reform

If you pay any attention to politics and current news items you have heard all of the debate that is going on about health care reform in the U.S. I do not pretend to be an expert in this, nor do I claim to know enough to tell you what you should do or think about it. I am listening and reading a lot. In general I am politically conservative, and there are very few politicians that I trust to be looking out for my best interests, even though that is what we elect them to do. I guess you could call me a conservative cynic. Although I know there are a lot of things that aren't working well in the way we manage the financial side of health care in our country, I have big doubts that the government increasing its involvement at any level will be beneficial. Given the current mode of government, however, I think that is what we're headed for. Just think about the government agencies you already have to deal with on a regular basis and how hard it is to get what you need from them when you need it. Still, we know about big hospital bills (our family frequented a local hospital for about 9 weeks around the birth of our twins, 5 weeks for me, one week off and then 3 weeks for the two babies); crazy insurance rules, applications, the pros and cons of COBRA, and pre-existing conditions...and this is where today's action post comes in.

Children with special needs will undoubtedly be affected by whatever decisions our elected officials make about health care reform. As a parent are you concerned? Do you know what is happening? There are steps you can take to get involved and make your voice heard. No matter what your political stance, I encourage you to take these actions at minimum:

1. Read, listen, or watch as much as you can in order to learn as much as you can about the health care reforms that are being considered by our elected officials. I've linked to two differing views below. Consider these a starting point for your investigations.

• "The sick, special needs patients, and seniors – those most at risk when the government involves itself in these tough decisions – deserve better. Like it or not, once government-run health care is a fait accompli, government rationing becomes the logical endpoint." getbetterhealth.com

• "The status quo that is 50 million Americans not having health insurance, a system that has administrative waste and as a result drives up premiums so that it is unaffordable for many patients – that is just not acceptable." huffingtonpost.com

2. Make some informed decisions about where you stand on the issues.
3. Contact your elected representatives and let them know your opinion.

There are also several specific actions that you can take if you find that the messages of these petitions and e-mails aligns with your own views. I'm sure there are others, these are just some I've come across in my own search for information.

• Send a "fax" to Speaker of the House, Nancy Pelosi, asking her to watch the AutismVotes advertisement and to support health care reform that ends insurance discrimination against autism. ***Update: 7/29/09 - AutismVotes asked everyone to stop contacting Speaker Pelosi because her office entered "productive discussions" on this issue. I'll keep you posted if I hear any more on this. ***Update: 11/27/09 - The House version of the Health Care Reform legislation did include provisions to end insurance discrimination against autism. You can read more here. This shows that with enough voices concentrated on one objective we really can be heard!
• Sign a petition to ask Michelle Obama to sit down with two parents of autistic children and two self-advocating autistic adults to discuss the formation of an Autism Corps.
• Watch this video about the effects of the current health care reform proposal on the abortion issue. CitizenLink can help you contact your representative.

Sunday Digest 4

1. Experience the story of a family forever affected in part by a nurse's negligence. For the full context read the associated article. It is rather lengthy, but certainly eye-opening. I have met this family and their resilient spirit is amazing.

2. Watch this advertisement sponsored by Autism Votes/Autism Speaks, and send a message to Speaker Nancy Pelosi to get autism insurance reform as part of the National Health Reform package. If you agree with the message of the ad you can send an e-mail to AmericanVoices@mail.house.gov with the following suggested text:

Dear Speaker Pelosi/Leader Reid,

Our family believes that health care reform that does not end autism insurance discrimination is unacceptable. Please go to http://www.autismvotes.org/ to view an important TV ad, which is currently running on CNN, CNBC and MSNBC. We hope that moving forward, you will be sure to stop the discrimination that our child, and millions like him/her around the country, faces on a daily basis. Our children deserve appropriate access to the medical treatments and therapies they need for their medical conditions.

With kindest regards,

Your name
Your City and State

update 7/18 - when I tried the AmericanVoices e-mail, my message bounced back to me. The mailer-daemon did not tell me why it failed - perhaps the mailbox was full when I sent my message. Try a Google search on "Pelosi contact" and you'll see a link for the Speaker's website where you can send an e-mail directly. This will work if AmericanVoices does not.

3. Some good advice on what to do with the inevitable looky-loos.
Smile and say hello. This may give them an awareness that they are staring and
that you've noticed. I love it.

4. For friends who are caring for both aging parents and special needs children. You are not alone. This, in general, looks like an encouraging blog. I know I'll be checking it out...

5. Please join me in praying for these special needs children in Florida who have lost their parents (again) this time in a brutal murder.


You can see a list of Sunday Digests (and other posts) here.