Autism vs. Asperger's Syndrome - We have the answer!

In December of 2009, Stephen was diagnosed with Autism Spectrum Disorder. This is a VERY broad diagnosis which includes Autism, PDD-NOS, Asperger's Syndrome and more. When I announced to friends and family that the results were ASD, but not specific, I did say that figuring out which part of the spectrum Stephen fit into would be a long process that could take months. At first, I was sure it was autism. Then, I saw another side of Stephen that was more aspie (nickname for a person with Asperger's). We did have a doctor say that is was more than likely PDD-NOS if we could not pin down which side of the spectrum Stephen was on, but the doctor made that assumption based on history only.

To our relief, Stephen has finally started back to seeing his occupational therapist. He spent 1 year with her when he was in the first grade. He went the entire year of 2nd grade with no O.T. at all. He does work with a speech therapist at his school, but we saw a rapid regression. I made the call a few months ago to get him back in, and our first appointment was yesterday.

I was very comfortable with his O.T. giving a definitive answer of Asperger's Syndrome or "AS." Although we have heard it from others, it was never from a specialist that treats these kids every day and has worked with Stephen every week for a year. Ms. Terry confirmed that Stephen is DEFINITELY an aspie, which is good news. It's the highest functioning form of Autism Spectrum Disorder. Stephen is very bright and makes really good grades in school - especially math. He could talk to anyone all day about video games and his favorite comics. He has a very rigid routine, much like a person with Obsessive Compulsive Disorder. I don't know if that will develop into that particular diagnosis or not. Right now, we are treating his symptoms and difficulties, rather than the name behind this "beast."

The main things we will soon be working on are sensory processing integration, communication between his left and right hemispheres of his brain, motor coordination, social skills and working well with others as he will be doing more and more in school as he moves up through the grades. I can see now that his love and fascination of mathematics could lead him to a very successful career in technology, programming or engineering. He's going to be the brains behind the business, but will not be the one to manage others, make presentations or be forced to work with a team of people - and that's okay.

We are trying to teach Stephen that Asperger's is not a bad word. It does not mean that he's a bad kid or a stupid person. It's just part of his personality and what makes him tick. I try to tell him every day how smart he is and we practice social skills often, although he is resistant right now. I know that will get better with time and therapy.

He's doing well in school this year. 3rd grade is a difficult one, but he has a very patient and loving teacher with peers who know he's special that try to help him out and accept him for who he is. They know that Stephen is just... well... Stephen. And we love him for who he is - the whole package - Asperger's and all.

My experience with an Autism support group and the writings of Jenny McCarthy

I am the father of an Autistic child. We found out the day before Christmas break of 2009 that our younger son is on the spectrum. Per his diagnosis, he is Autistic, but also displays Asperger's tendencies. To help understand what I am going to deal with as a parent, I have joined several support groups on the web and occasionally research the topics in an effort to know more. I ask questions of other parents, and on occasion I solicit the advice of a very old friend who is a pediatrician and a professor of pediatrics at a very well respected university.

A couple of weeks ago, I posted on a support group about the Gluten Free Casein Free (GFCF or GF) diet. Some people in the group locally were touting the wonders of the diet and how it had helped their child. Lisa and I had already looked into this diet and had even tried a couple of things, with less than stellar results. I e-mailed my pediatrician friend about the GF diet, and he explained to me that the studies performed and evaluated so far were flawed (small sample size, no blind testing, etc), and that there is one study that was recently completed with results still being compiled. In an effort to discuss this, I posted a message about some of the concerns of my friend along with our results from our little experiment.

With some of the responses I saw, you would have thought I had put a picture of the Pope on a Crucifix at the Vatican and then insulted the church. Some folks were very civil and related similar experiences to mine, but a few insinuated that my pediatric friend, who I would trust my child's life to, didn't know what he was talking about.

Celebrities in the United States have a very unique position in society. Because they are well known, always in the press, and make more money for showing up to take a picture than most of us make a year, they are automatically considered authorities on anything they wish to talk about or write a book on.

In 2007, Jenny McCarthy published a book titled Louder than Words: A Mother's Journey in Healing Autism. In this book, which I admit I have not read, she apparently discusses her experiences as a parent of a child on the spectrum, her beliefs on what causes autism, and how she has "cured" her son.

As a response to my post, at least one parent, if not more, referenced Ms. McCarthy's book and stated that she knows more about ASD than the pediatrician I consulted. I cannot speak to Ms. McCarthy's experience with her own son, but just because she has had success with her own son does not make her an expert on the subject.

In the summer of 2004, I had the privilege of taking American Literature II from Dr. Barber Bancroft at Troy University, Montgomery Campus. As part of the class, we were required to write a paper on an author of our choosing from the course material. I chose to write on Sylvia Plath. I didn't choose her because I liked her work. On the contrary, I couldn't stand any of her writings. The reason I chose her was because I knew that she suffered from depression and had committed suicide. I felt that since I knew people who suffered from depression and other mental disorders, that I could write a paper about her. Dr. Bancroft quickly corrected me. Just because I had known a few people who suffered, I was not an expert on the subject, just as Ms. McCarthy is not an expert on Autism.

One of the parents in the discussion group made the comment that I was doing my child a disservice by not implementing a GFCF diet until credible research has been validated. She was not only touting Ms. McCarthy's work, but was also discussing how the GFCF diet had helped her child. I am glad that the diet may have helped her child, but I am not willing to risk the long term health of my son on something that may or may not work. My research and understanding is leading me to believe that the short term, possible benefits, of the diet do not offset the potential long term effects. As an example, children on the Spectrum tend to have thinner bones than neurotypical children, and that those on the GFCF diet that are Autistic has twice as thin bones as Autistic children on a normal diet.

Ms. McCarthy's work not only discusses the wonders of the GFCF diet, but also states that vaccines cause Autism. Her claims fly in the face of known scientific fact. As a parent, I can understand her concerns. For example, when H1N1 was all over the news, my wife and I chose not to vaccinate our children because we felt the shot had been rushed to market and that not enough research on the vaccine had been performed. However, numerous studies have been performed that show no links between vaccinations and the occurrence of ASD in children.

Is Ms. McCarthy right? Am I right? No one knows right now, but given the choice of following the advice of a woman I have never met, whose greatest accomplishments in life are posing for Playboy magazine and hosting shows on MTV, and the advice of a pediatrician I have known personally for 30 years who has been in the medical field for 10 years and practices/teaches at a major university hospital, I will choose my friend. He has never met my son, but I know that when I talk to my friend, he will give me the straight truth, watered down enough so that those of us not in the field can understand. I feel that like me, he hasn't dismissed the claims, but is waiting on concrete proof, no matter the result. Once the results are in, then maybe I will be willing to try such drastic measures. Until then, I'm following sound medical advice and doing what I know right now is best for my child.