Wednesday, March 31, 2010

RSVP MAGAZINE ARTICLE FOR APRIL'S AUTISM AWARENESS MONTH

autism awareness ribbonImage via Wikipedia

RSVP MAGAZINE ARTICLE FOR
APRIL'S AUTISM AWARENESS MONTH

Q&A with Laura Corby

Being that April is Autism Awareness Month, it seemed more than appropriate for RSVP editor Leah Fitzpatrick to meet up with the founder and CEO of the Autism Solution Center, Inc., Laura Corby. This facility helps children and adults with autism and autism spectrum disorders, like ADHD, ADD, Asperger's Syndrome and bipolar disorder, and was the first of its kind to offer services across all domains and at no cost. Though the center’s staff continues to treat patients in-house and online, times have been tough for the nonprofit, forcing Corby to make a decision to start charging patients a small fee last month. She’s saddened to not be able to help everyone that needs treatment and is on a mission to educate the general public about the necessity of this center. Corby also plans to open an Autism Solution Center in all 50 states and hopes to make her current Cordova facility into a multi-million dollar state-of-the-art treatment center in the near future.


RSVP: What initially motivated you to start the Autism Solution Center?


Corby: I have two kids with autism spectrum disorders, and I have Asperger's Syndrome, which is a high functioning form of autism. My daughter and I were actually incorrectly diagnosed with bipolar disorder. I got diagnosed at 16 with bipolar disorder, and they put me on all of these psychotropic meds for 20-something years that made me very nonfunctional. I even quit school in 10th grade. My daughter was diagnosed with bipolar disorder and ADHD at age 7. They put her on psychotropic meds, which made her psychotic. Then, my son, who about that time was 1, got very ill. He ended up going to the hospital, and he came home and was unresponsive. He quit talking, he lost all of his language, he stopped eating, he had chronic diarrhea. People don’t realize a lot of the signs and symptoms with some of these kids because it’s not just about talking and socialization. This is a medical problem that causes neurological consequences that has behavorial outcomes. When you just treat the behavior end, it’s like spanking a kid with cerebral palsy and expecting him or her to get better. We have to look at the etiology of this disorder and look at what the underlying issues are that are causing all these problems.


RSVP: What are your thoughts about the causes behind autism?


Corby: Before I even go there, I want you to know I’m not anti-vaccine at all, but I’m absolutely, positively one million percent convinced they play a role. I don’t think they’re causal, and I say that because if they were a cause, everybody that had shots would have autism. What we do know is that there is a subset of our children that have a genetic predisposition, and that genetic predisposition is setting the stage. Genetics load the gun, environment pulls the trigger. It’s not just the shot in general, but there are a lot of different things. The mercury for some kids is a trigger, the live viruses in vaccines for some kids are a trigger (such as the MMR), the combination can be a trigger and sometimes kids can get a bad bout of the flu that’s a trigger. It can be environmental stuff, and you know that too because you look at places like New Jersey, where they have a lot of coal burning facilities, and you have pockets around those industrial areas where the rates of autism are thousands of times higher than they are any place else, and it’s because coal burning emits mercury. There’s a lot to look at, and there’s really no one answer. We are not telling families not to vaccinate, just to be educated about their choices and vaccinate safely. Thimerosal-free, single dose vaccines and spreading them out when there is a family history. What harm is there in being safe if there's any question?


RSVP: What’s the difference in people who shows signs of autism at birth versus those who show signs at a later age?


Corby: Well, I’m guessing that about 85 percent of the kids we see now have regressive autism, where they develop normally and somewhere between ages 1 and 3, something goes wrong. Even with those groups, you find parents saying, “Even early on, I noticed some of the symptoms but never put it together.” You have to recognize that even in the regressive kids, there’s still a genetic predisposition that is there from birth, which can still give them a lot of these characteristics, it’s whether or not they’re pushed over the edge. What I think is interesting too is if you look at the rates of at-birth kids 10-15 years ago, which were one in 10,000 kids, you see those rates are close to still intact today. That I think is fascinating because that shows us that those rates have remained pretty stable, but we now have this whole new plethora of kids that have this new regressive form, and it’s often recoverable. In at-birth kids, you don’t see a lot of recovery, improvement yes, but not often recovery, but these regressive kids are getting better when they’re treated. So, if autism is truly genetic only, you don’t get better from genetic disorders. That tells me that there’s a tremendous amount of environmental factors involved that are sending a whole group of kids over the edge. This is not just a genetic disorder.


RSVP: What are the national rates for autism?


Corby: We’re talking one out of 90 children. We have an entire generation of children’s lives who are at stake right now and are not going to be functional. Think about that. That’s crazy. And there's all this money going into genetic research, but who's helping these kids NOW that have already been affected?


RSVP: How have doctors received your efforts to help those with autism?


Corby: I speak all over the country at conferences and training/teaching workshops. The bottom line is you can tell me all you want to about how what I’m saying isn’t scientifically valid because there’s no CDC placebo-controlled studies to prove it; well, yeah, nobody will fund them because they don’t want to know the answers. And interestingly enough, there are plenty of studies out there supporting this, that have been dismissed. At the end of the day, you can make studies say whatever you want to—depends on who’s funding them. I don’t give a darn what studies say anyway because what I really want to know is, “Are the kids you’re treating getting better or not, because ours are?” If they’re not, isn’t it time we start doing something different? It's all about outcomes, and should be. So, families love us, but many in the therapeutic and medical community think we're absolutely insane. Really though, at the end of the day, doing something that works and is getting kids better does not seem like the insane option to me.


RSVP: What’s some advice you give to parents if they suspect their child is showing signs of autism?


Corby: One thing I tell parents now is, “You have that instinct and that intuition for a reason, don’t you ever ignore it. It’s never wrong.” I never heard a mom come in here and tell me, “Oh well, I thought something was wrong, but it really wasn’t.” But, what I hear every day is, “I just feel sick because I knew something wasn’t right, but I couldn’t pinpoint it and no one would listen to me.” Doctors need to learn to listen to that. There are autism checklists on our website that parents can complete if there’s a concern. Better safe than sorry. http://www.autismsolutioncenter.com.


RSVP: Do public schools offer any programming for kids with autism?


Corby: Good question. I had to learn the law and learn what, on a federal mandate level, are these early intervention systems in schools required to do for these children with special needs. We pay taxes for all these services, but my child, for instance, wasn’t getting them. I actually went in to my son’s school and said he needs this and this, and when I asked the school if they had those services, they said, “Oh, we don’t have that here.” I told them that’s not what the law says, and I think they were floored I knew the law because I don’t think anyone had challenged them before. My son ended up getting everything he needed. He got 35 hours of ABA in the home environment, which is a behavior modification technique, which is how our children learn and is what our kids need desperately. He also got five hours a week of speech therapy, three hours a week of occupational therapy and an hour a week of music therapy, and we were the first family through early intervention here that had ever gotten that. All of a sudden, he started making these huge gains. Then all these other families are saying, “Will you help me?” It was really empowering because the more I learned, the more I realized that I was driving this bus. About that time, I opened the center. I worked out of my house for two years, and then in 2003, we applied for nonprofit status after I leased a space just for the center. Then, we got the land donated for our current location, and we put up these temporary buildings thinking we’d just raise funds for a building. How na├»ve was I? Here we are, still in these temporary buildings five years later.


RSVP: What’s your biggest challenge currently at the center?


Corby: We’ve been doing this seven-and-a-half years now, and until last week, it was a no cost center. We did everything at no cost for families because what I found is when you go to these DAN (Defeat Autism Now) doctors, who are a group of specially trained medical doctors who have expertise in metabolic issues and gastro and immune issues that are common in kids with autism, you can easily drop $2,000 or more in one day, like I did when I had to take my kid to a DAN doctor in Louisiana. If I didn’t have a credit card and they hadn’t been willing to work with me on a few things, I couldn’t have done that. What do people do that don’t have an open credit card? The answer is their kids don’t get helped. That’s why I decided to incorporate the no cost policy at the center, and we hired a DAN doctor and started bringing him in to see patients. I was doing biomedical counseling, dietary counseling, teaching functional communication, behavior modification and pretty much doing everything, and he was coming in once a month to see patients. We did that probably for four years off and on, and then he moved. I hired another doctor for about a year, and he finally came back. Unfortunately, I’m at the point that I’m having trouble just paying the bills, so we are charging what were suggested donation rates now for services. Also, our donations have dropped almost 50 percent in the last year. We need help. We need board members, volunteers and help fund-raising. It makes me sick because I know if we go away, there’s no one else doing what we do. This is so desperately needed, and people don’t realize what an epidemic autism is.


RSVP: How many autistic people have you helped at the center?


Corby: I can’t give you an exact number because I don’t know off-hand, but I can tell you from my database that we’ve helped close to 1,800 people in the last five years. That’s not even counting how much I do online. I have on a continual basis thousands of e-mails constantly in my inbox and our phones ring off the hook. I can’t keep up with it!


RSVP: Where do patients at the center come from?


Corby: We have one family now coming to us from Iraq. We have others from Canada, Australia and all over the place. You know, we were the first organization worldwide that did everything under one roof and did it at no cost. Of course, we can’t say anymore that we do it at no cost, but maybe again soon.


RSVP: What is your ultimate goal with the people you and your staff treat?


Corby: My goal is to get people with autism living independently. I don’t want these parents when they die to have to worry about who’s going to take care of their kids.


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