Wednesday, April 4, 2012

Autism epidemic, continued

Last week I told you how I felt about the new autism numbers per the CDC. In case you missed it, the prevalence of autism is now 1 in 88. My post prompted a rather lengthy comment from Heidi that I felt needed further discussion. I reached out to my blogger friend, Cari from Bubble Gum on My Shoe (an awesome gal who has done guest posts for me before – here and here), to help me field the questions that Heidi posed. Without skipping a beat, she got right to it and added some great value to the discussion. Unfortunately, my mind doesn’t work that fast and I needed a bit more time. I want to continue on what Heidi and Cari started, and weigh in with my own thoughts, too.

Well, what I didn’t realize is how much I would have to say about this! My post got to be out of control and way too long for any sane person to read. In an effort to save you from reading for over an hour, I broke up some of it into a separate post on Monday to coincide with World Autism Awareness Day.
So, now I’ll bring you back to the original comment that spurred this on and begin the discussion. Get we go!

Comment from Heidi:
I want to make it clear that this comment is truly my trying to ask an autism parent- I'm not trying to judge/say someone is right/wrong or that there is only one "best" way to deal with things, I just am curious as to your opinions coming as someone who deals daily with children with autism. I read your blog, but do not have any kids of my own (still going to grad school) but I have discussed autism with many different people. My roommate is a special education teacher at an all-special needs school in the city. I do scientific research (not strictly on autism per-se, but have done neuro-developmental studies, etc) and work in a gov regulatory agency. I think it is interesting and difficult to pin-point in that disorders like autism are so multifaceted in that there is no one cause be it a genetic aberration (such as the number of extra protein repeats directly correlates Huntington's severity and on-set) or environmental factor (it's all over the US and abroad in a variety of households).

My question/opinion to you would be this- I can hear your frustration coming through your post, but what would you prefer the money go to? Budgets are stretched so ridiculously thin in some places, and there is so much time involved (which I am sure you know) collecting data, checking the data sources, analyzing, checking the input, analyses, etc. By the time you do all the paperwork and legwork it easily takes years to compile this data. I personally would rather see a limited study sample like this that costs less and can come out "faster" than a study doing all states and a wider age range that takes autism money away from other programs (i.e. classrooms, community outreach/programs, etc). Would you rather see a more thorough study because you think it would change policy more? (please remember- I am truly asking as to what your opinion is as someone who deals with this daily; hard to convey this tone correctly through the computer).

My other comment would be to address the 50% unknown comment. I understand that as a parent that must be truly frustrating to read. I know that you have done extensive research on your own time about autism. However, I think that part of that 50% of the unknown would include lots of areas, such as all of the new types of RNAs in the last decade (ie miRNAs), or even just the field of epigenetics- the way in which an individual's genetic code is expressed (ie the way all of a person's genetic code plan is put into action and maintained). I was at a class at the NIH on this last year, and it is so intricate and so much is still unknown because a lot of the technology is still new that the costs are just starting to come into range of where extensive research will become a possibility. So you say it is not genetics, but there is still a strong possibility that there is something at a smaller level that has a global impact on neuro-development.

I know that this is probably the longest comment ever (sorry) but one last question- Do you as a mom of children with autism think that restricting the diagnosis will allow your children better support? So if re-defining DSM criteria does "eliminate" some children, do you think insurance companies/schools/etc would be able to better support those children that still meet the "appropriate" autistic criteria? (not that there truly is such a thing). So if there were a separation of asperger's and autism diagnoses with each getting their own allotment of funding, do you think this would allow for better use of the available financial resources for those still meeting the autism criteria?

I am sorry this was such a long post. I am not trying to offend anyone in any way- I really would like to know what you think as a mom of children with autism who has educated herself about autism (vs the people I talk with primarily being more scientists and educators). If you do not want to respond to my post, or would like to delete it I would understand.

Thank you,

Cari's reply:

Thanks so much for taking the time to write and inquire. As a parent of a child on the spectrum, it always warms my heart when people are interested or just ask anything.

I'm just going to admit, most of that was over my head. I don't presume to know which test is best or which genes to splice or study; that is not my area. And as educated on Autism as I have made myself with my own research, I am only that, self-educated and only an expert on my own child with Autism. Autism is fickle, no two children are alike or have the same symptoms.

At this point this is what I'd like to see: An Autism parents life revolves around paperwork. We are constantly filling out a myriad of questionnaires, so there is no misdiagnosis mind you. I would bet all the money I have in the bank that parents of children with Autism would be willing to do an online questionnaire or study about symptoms, genetics, pre and post natal and development, etc. We're pretty darn quick because we know it all like the back of our hand. They'd be all over it, no incentive required other than to find some common thread and perhaps we could move forward from there. And yes a broader scope for sure. Studies have shown Autism rates higher in some areas and states than others, so we do need to include everyone.

Our pediatricians need to be trained to deal with and perhaps not diagnose but spot the symptoms of Autism. A general pediatrician will not diagnose Autism. It is not something you do in an hour. Developmental Pediatricians do the work as well as other trained health care professionals. To the best of my knowledge, doctors are still taught the same old crap that is over 20 years old when it comes to Autism in medical school.

Changing medical diagnosis won't do anyone any good as far as I can see. Change in healthcare and insurance coverage need immediate attention. Our kids can barely get the minimum required therapy needed as is and insurance is cutting Autism out of covered services by the hundreds and thousands every day. Just ask CAM here, she gets an automatic denial. So maybe just a nod that this is an epidemic and that OUR KIDS NEED SERVICES NOW! The diagnosis for cancer is still cancer.

I cannot tell you anything without bias, because my life and my son's is directly affected by Autism. And while it has shown me many blessings, it has also robbed my son of so many things in life. So do not take this the wrong way when I say I don't care what gets done, but do something. I feel like these kids are tossed aside and ignored. That is not adequate in my book.

So I have no concrete answers to your questions, and for that I am sorry. Thank you so much for wanting to help, and for doing what you do. You will do great things in this lifetime. How about a Nobel Peace Prize for finding the cause of Autism? :)
Now, it’s my turn.

I’m warning you, it’s long. Cross your fingers that it will be coherent and worth the read! Here we go:

Heidi, thank you so much for your thoughtful inquiry. I appreciate you wanting a parent perspective and I thank you for your interest in autism. Your work in the scientific community is needed.
Yes, autism is very multi-faceted! I do not believe that we can rely on the common and widely held assumption that ASD is predominantly a genetic disorder. For most diagnosed kiddos, it is a complex medical disorder. Genetic testing thus far has been sorely lacking and there does not appear to be a “smoking gun.”

Further, there is no way possible for a genetic epidemic to occur in such a short time span. Autism is a fairly new condition, and for it to explode in prevalence the way it has proves that there is something more at work than just genetics. It is obviously very complex, and I believe it to be a result of many factors. In fact, I just read an article about how the EPA now concedes that the environment may be the likely explanation for the increase in autism prevalence.
My own personal theory, referenced in another post I wrote about the environment and autism, is as follows:

“The way I like to think about autism is that our kids each have a row of dominoes stacked just so, with each one a possible trigger or tipping point. There are many dominoes, and each domino on their own is seemingly insignificant, such as: allergies, reflux, eczema, ear infections, diarrhea, food intolerances, asthma, chemicals in the home, pesticides on our food, heavy metals exposure, fluoride and chlorine in our water, candida overgrowth, the vaccine schedule, genetic predisposition, etc. The list seems to be endless and I have by no means included everything that could ultimately be involved. When one or more of these dominoes gets bumped and the dominoes are close enough together for the bump to make an impact, I believe it triggers the cascading fall into autism. The sum of all of the parts equates to a life-changing diagnosis.”

I would prefer that money goes to identifying children with ASD at younger ages. We need to build on what we understand about brain neuroplasticity and try to effect positive change to neurological development of those youngsters who are identified. My oldest son, Monkey, was not diagnosed until after he turned 4. I think maybe we could have done more for him had we known sooner.
My youngest son, Prince Charming, was nonverbal and violent. Thanks be to God that he is no longer as significantly affected as he once was. There have been a lot of very difficult times with my boys. Only now do I feel like we are emerging from the fog of those experiences. We still deal with plenty of stuff, but the crisis mode no longer feels permanent. Prince Charming is now fully verbal and the severity of some of his symptoms have decreased tremendously. He is a different little boy. But, we figured things out at an earlier age for him (around 2 and a half years old) due to what we had experienced with Monkey.

In my opinion, and knowing what I know now, diagnosis and therapeutic interventions did not come early enough for either of my boys. I try not to torture myself thinking of what things would be different had we known about autism earlier on and what changes may have come through various early interventions and therapies, but I can hope for their continued progress and for the future of the children that come after them.    
I read something recently on this subject. What they found was that a vast majority of research done about the biochemical abnormalities of ASD found co-morbid medical conditions associated with the diagnosis. And, when these medical conditions are treated, the symptoms of autism are diminished. This is what we personally discovered with my formerly nonverbal son. Why is it that when we see such clear evidence, it is not considered worthy of continued research?

In the words of the National Autism Association’s President, Wendy Fournier:
“FOLLOW THE SCIENCE, wherever it may lead. Spend our money responsibly, fund studies that can quickly lead to effective treatment for those already affected and prevention strategies to stop the catastrophic epidemic of neurological disorders in our country’s children.”
I agree 1,000%! We need to put our money toward early intervention AND medical treatment for co-morbidities. These things in and of themselves can help to create a better quality of life for the affected child and their family members. 

Often times, it is the parents (who are in the trenches and who see what works and doesn’t work for our children with autism) that are dismissed by the scientific community. I would be willing to make a bet that a good portion of us autism parents have done more research than any of the medical professionals that deal with our children. It’s time to listen to what the parents are saying and direct money and resources toward those areas that we see the most need.
It baffles me how when doctors are witness to significant improvements in a child diagnosed with ASD, they typically are not inquisitive about what things have been helping that child. In fact, as is often the case, they may even dismiss the parents if the information is offered up. If there are noticeable changes, wouldn’t doctors want to learn about what has been working? Wouldn’t they want to help continue that progress? Wouldn’t it be an opportunity for a dialog and for potential learning that could benefit others as well?

This kind of mentality from doctors is not cutting it. Families like mine (and there are a LOT of us) have pretty much given up on the traditional medical community and now seek assistance elsewhere. Our naturopathic physician has done wonders for not only my kids, but my entire family. We are actually better off now, so in a way I’m happy that the traditional medical community doesn’t “get it” when it comes to autism.      
I also agree with Cari, in that parents are willing to participate in data collection efforts whenever possible. I have involved my children in research studies, and many of my friends have also participated in some sort of research. We are in a hub of research here in Washington, with the influence of the University of Washington Autism Center and Seattle Children’s Autism Center. I have also been involved with grad students both in the US and overseas, helping provide them with data or commentary for their Master’s degree or Ph.D. research. Parents want to help. We want the information to get out there because it will only help our kids in the process. We quickly gather together for grassroots efforts to collect data when needed. I know this because I have participated in situations like this more than once.  

Here is a quote from a recent Seattle Times article about the new autism numbers:
Washington was not one of the states included in the study, and autism is not tracked by state health officials. But Dr. Bryan King, director of the Seattle Children's Autism Center, said the report of growing numbers of children with autism spectrum disorder wasn't news to those who work in the field. "We're up against a tidal wave of need," he said.
More than 1,000 families are on a waiting list for diagnostic and therapy services from Children's, he said. "Families are having to confront the difficulties in accessing services and providers are trying to keep up with the press of humanity at the door."

From my work in my own support group and special needs nonprofit organization, I know what he’s saying is true. I know how many families are on endless waiting lists. I know how many of them finally get their child in to be seen by a diagnostician only to be turned away because their children are “too young” to diagnose (even though they are over the age of 3). And, although these children have plenty of symptoms, their family gets to hurry up and wait all over again until their child is older just to try to get some answers. Don’t get me started on that one! It will NOT be pretty.
Our family was on endless waiting lists for diagnosis and therapy. I can tell you from personal experience that it is very frustrating to have to wait so long when you know that you have a short window of prime opportunity related to your child’s neuroplasticity. There is a lot of stress in those circumstances. Proper diagnosis, therapy and care are essential at young ages, yet many parents are unable to access these things for a multitude of reasons. We got onto multiple waiting lists just so that we could attempt to get services in less than a year. Dr. Bryan King is right. There is a “tidal wave of need.” This is without question. And, it only continues to get worse.

Our government is not doing enough to address the current and future implications of a generation of children with autism. Want to know something funny about kids? They grow up! What will we do then? There are not enough dollars being placed into autism as compared with many other less prevalent childhood diseases. Autism will have a much larger impact on our society and ignoring it will not make it better. I think that a fully-funded population study is desperately warranted.
Years ago when the Child Find initiative was first started, our government trained people, like milkmen and postmen, to go door-to-door and ask specific questions (much like census takers) in order to find special needs children that were not in school. This was due to the old thinking that special needs children should be removed from the public setting. Obviously, this was prior to the recognition that special needs children actually do have a human right to be educated. At that time it was common for these children to be sequestered out of sight or automatically placed in an institution. I am thankful for the government efforts at that time to bring these children into the school setting.   

As with the efforts of Child Find, there are ways to get the information. It could include everything from online submission to door-to-door collection. It is possible, especially if the government is willing to place it as a priority. They’ve done it before. Wouldn’t it be like riding a bike? I’m sure they could figure out how to do it again, especially with the benefit of all of our technological advances since that time. The internet, mobile technology and social networking could play a huge role in data collection. Let’s face it. If more votes can be collected via phone poll for American Idol than through ballots during a Presidential election, it doesn’t seem so out of reach.     
If this kind of effort is put forth, I firmly believe that the numbers will be so staggering that the massive public outcry that would ensue would then force a change in policy. My State continues to sweep autism under the rug. I have made calls, sent emails, met with my local politicians, spoken at our State Capitol, and I have testified at a Senate hearing. Autism is not a priority here and it is tragic. Families are still discriminated against for basic, medically-necessary care for their children with autism. The autism diagnosis code remains an automatic denial. That needs to change, not only for my family, but for everyone. And not just in my State, but everywhere.

I love what Joseph Hill said in a recent Huffington Post article:
“This is not 1950, it is 2012, and families should not have to go bankrupt to pay for their children’s therapies. Insurance companies should cover conditions that require treatment.”
I could not agree more!   
In terms of your questions related to the new DSM-V criteria for autism, I do not believe that restricting the diagnosis will allow for better support. In fact, I think it may actually be harmful. I have a couple of quotes from a recent New York Times article that I would like to share about this. The first quote sums up why I think the proposed changes to the DSM-V are so dangerous.  

The changes would narrow the diagnosis so much that it could effectively end the autism surge, said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of the new analysis of the proposal. “We would nip it in the bud.”
That statement makes my blood boil. Getting rid of the autism epidemic via stricter diagnostic protocols would be catastrophic. Kids will not be magically cured because the criteria changed. The autism prevalence will still be there, but it would be undiagnosed and unsupported. This would create undue hardship for those unfortunate souls forced into that situation. It’s hard enough to get proper support WITH a diagnosis. This spells tragedy in my eyes and I’m not the only one who feels this way. 

Here is another quote from the same New York Times article:

“Our fear is that we are going to take a big step backward, said Lori Shery, president of the Asperger Syndrome Education Network. If clinicians say, ‘These kids don’t fit the criteria for an autism spectrum diagnosis,’ they are not going to get the supports and services they need, and they’re going to experience failure.”
They…found that overall, only 45 percent of them would qualify for the proposed autism spectrum diagnosis now under review… about a quarter (about 25%) of those identified with classic autism in 1993 would not be so identified under the proposed criteria; about three-quarters (about 75%) of those with Asperger syndrome would not qualify; and 85 percent of those with P.D.D.-N.O.S. would not. (emphasis and parentheses mine)

Be aware that an Asperger’s diagnosis will not be separated, but rather eliminated entirely. Other diagnoses currently listed under the autism spectrum, like PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified), would also go away. Those diagnoses will not receive their own allotment of funding, so the proposed changes are not an easy solution to a funding problem.
What concerns me the most is that some children will no longer qualify for an autism diagnosis and will instead be diagnosed with Social Communication Disorder. This is a new thing. Think about the trouble kids have getting assistance with the diagnosis of Sensory Processing Disorder. It is not widely recognized yet in education and elsewhere. Social Communication Disorder will do the same thing for these kids since they would no longer be classified with ASD. There will be NO support for these children. They will have a much harder time qualifying for needed medical and educational help. Lack of support will bring harm to these children.

My biggest fear is that those who are higher-functioning on the autism spectrum will be forced to undergo new diagnosis to continue to qualify for educational assistance through their IEP. It would then be possible that those children would be re-classified off the autism spectrum and their support systems at school could be removed. This is a personal worry for my own children since an IEP is a critical part of their success at school. There are so many unknowns. I would prefer to just be labeled a “worry wart” over this whole issue, but there are such significant holes already that I don’t have a lot of optimism for things improving with the new DSM-V.
Wow. This has been some ride! We survived the never-ending post and can all breathe a collective sigh of relief. I think I over-killed most of Heidi’s questions and comments, but hopefully I addressed all of her main points. If you made it all the way through and are still reading, thank you. I would like to express my appreciation for everyone who commented on the blog post and on the Facebook page about this topic. Your input is always valued! I love to hear what everyone thinks about topics brought up in the blog. Dialog is good, don’t you think? Or, maybe by now, you don’t want to know anything I think ever again. I guess I should warn you that I don’t think I can keep my big mouth shut if I tried!  

Thanks for hanging out with me during Autism Awareness Month! 
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