Autism Spectrum Disorder

I wanted to take this opportunity to explain something that I am sure it is very obvious for those of us that have a child on the Spectrum, but not so clear for our family members and friends.

In my previous blog I mentioned that Jonathan's DAN! Dr. believes that Jonathan does not meet the criteria for autism but believes that he is still somewhere in the spectrum and would diagnose him as "very high functioning aspergers".

The word "Autism" is used to describe someone that may be diagnosed with any of the Autism Spectrum Disorders (ASD), but it is also one of the ASDs. And this makes the term complicated to understand (at least it was to me).

ASD is a spectrum of psychological conditions characterized by widespread abnormalities of social interactions and communication, as well as severely restricted interests and highly repetitive behavior.

The autism spectrum disorders are categorized by 5 different forms: the severe form called Autistic Disorder (also called “classic” autism), to a milder form, Asperger Disorder. If a child has symptoms of either of these disorders, but does not meet the specific criteria for either, the diagnosis is called Pervasive Developmental Disorder not Otherwise Specified (PDD-NOS). These forms range in severity levels from low functioning to high functioning. Other 2 rare, very severe disorders that are included in the autism spectrum disorders are Rett Disorder and Childhood Disintegrative Disorder.

The Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) provides the criteria for the diagnosis of autism spectrum disorders.

Doctors diagnose based on observations and parental anecdotes. They perform a number of psychological assessments to gather information that will help them better assess the condition of the child. But there are no blood tests that can diagnose this disorder. Therefore, the diagnosis of a child can vary from doctor to doctor.

Jonathan was first diagnosed to have mid to severe autistic disorder. After a few interventions (6 months of gluten free / casein free diet, supplements, intestinal yeast protocol, Tomatis auditory processing and ABA behaviroral therapy) he was evaluated by a different group of doctors and the diagnosis changed to high functioning autistic disorder.

What his DAN! Dr. meant was that he believe Jonathan no longer meets the DSM-IV criteria for autistic disorder; but because he still has some odd behaviors and language problems, that will keep him in the Autism Spectrum.

Based on the DSM-IV criteria, I agree with the Dr. that Jonathan does not meet minimum number of items under the "autistic disorder" to be labeled under this category. I believe he still meets 4 of all the items listed, which means that he is still in the spectrum, but he needs a minimum of 6 to be categorized under the autistic disorder. And after reading the criteria for Aspergers, I disagree with the Dr. about the Aspergers diagnosis, because Aspies speak very well and that is Jonathan's main problem right now. I would consider him high functioning PDD-NOS. We'll see what Children's Hospital says.

Having said all that, I feel that we have reached a very significant milestone in our recovery journey, and I thank all of you who have reached out to us to give us their good thoughts. It is huge to be out of the most severe form of ASD. And we have worked very hard to reach this point, but we are still in the ASD world and we need to continue everything we are doing to make Jonathan as high functioning and indistinguishable as possible so that he has a fully independent and happy life. The good thing: we are definitely on the right track.

Chelation information

In very simple terms, chelation is a therapy used to detox the body from heavy metals. You can use natural chelators, like high doses of vitamin C or E (anti-oxidants), or ALA, or you can use chemical chelators like EDTA, DMSA or DMPS. There are other products that claim to chelate metals like zeolites , clay baths and others.

All the doctors that are currently treating children with ASD agree that one of the main issues is the amount of heavy metals trapped in these children's bodies and they all treat the heavy metals. Each doctor may have their own protocols and preferred chelators, but what is important is that they all agree on treating heavy metals. Therefore, chelation is a critical part in the recovery of our children.

I have used transdermal (TD) DMPS (cream), transdermal Glutathione (cream), NCD (zeolites), high doses of Vit C, DMPS suppositories, EDTA pills and suppositories and through Yasko, I have worked on getting Jonathan's body balanced enough so that he can produce his own glutathione (the most powerful antioxidant that the body makes) so he can auto-detox.

I have tested his urine, hair and stools to check for high levels of heavy metals and he has been dumping metals for the past 3 years. The most significant time was when we went to step 2 in Yasko's protocol. His urine was crystal clear for weeks and had a very strong metallic smell. I never tested it, but based on Yasko's experience, I know that clear urine means metal dumps.

We have been using a French lab to test his levels of mercury and even though they have dropped in a year, they are still 300 points above normal. So that is the reason why his DAN! Dr. decided that we still have about 2 years of chelation. We will continue with suppositories (DMPS and EDTA) and zeolites and the Yasko protocol. I haven't graduated to IVs yet, and I don't know if I ever will. But I know a number of parents who have been and continue to be successful with IV chelation.

Interested in Family Members and Pictures

Out of the blue, Jonathan asked my dad yesterday what his dad and mom's names were and if he knew them. My dad answered all of Jonathan's questions. Minutes later, my dad left with Javier and Vanessa to the grocery store, and Jonathan came to me and asked me if my dad had brothers and sisters. I told him yes, and asked him if he wanted to see pictures and he jumped and said yes. We sat for about 30 minutes looking at pictures of my dad and his family and my mom and her family and then Javier's family. He then asked me to show him pictures of him when he was a baby. And I did. Soon after Vanessa arrived with Javier and my dad and she sat with us. We saw lots of pictures together, from when they were babies to recent ones. They had a blast.

This was the first time ever that Jonathan does something like this. Vanessa had sat with me a couple of times in the past 6 months to look at pictures (she loves to see pictures of family members), but Jonathan had never cared.


Happy Birthday Marco

We had a birthday party at a local gym today. The kids had a great time. I filmed most of it, and took few pictures. I haven't edited the film but here are some pictures. Jonathan interacted and played like any other kid. The only thing that made him different was that his voice was louder (e.g., when the girls asked all the kids to tell their names and age, all the kids used a tone that was loud enough for everyone to hear, but without screaming. Jonathan screamed both his name and age.) He was also loud when he responded to the teachers questions/comments. Everything was appropriate, just the volume in his voice and the intonation were off.

Other than that, he listened and followed instructions and played and ran and jumped and did everything the girls told the group. We was a bit loud when he laughed. I stayed away watching him and the other kids and the teachers. He behaved as one of the kids. That was great for me to watch because that gives me an idea of how he is going to be in summer camp. I didn't tell the girls that ran the place today that he had any problems. And they didn't treat him any differently than the other kids. I know I'll need to tell the summer camp instructors just in case he has a bad moment. But I feel better about it.