D Day

Today we received Charlie's official diagnosis of autism. Obviously this comes as no surprise and does not change the course we have already begun. Charlie was diagnosed using the Childhood Autism Rating Scale (CARS). CARS scores range from 15 to 60 with a minimum score of 30 being the cut off for a dx of autism. Charlie scored a 31 on the CARS, which just puts him in the autism category. This category is defined as "mild/moderate" autism.

Now I feel we are officially done with labels. In my opinion, the whole diagnosis (labeling) process is a waste of time since most parents already know what they are dealing with and know their children far better than any doctor and no test is going to capture everything. However, it is a necessary evil in that you need a dx to get treatments covered by insurance (what little they do actually cover) and to get services from your local school system.

There is one advantage to a dx of autism over one of say, PDD-NOS, in that Charlie will likely qualify for more services through the local school system and maybe other organizations. For some reason, they deem the dx of autism more seriously than "just" a PDD dx. . .although you would be hard pressed to find differences between many of these kids. Dr. Carnavale told us today that if a child is borderline, she will usually dx them with autism so they can get more services. Whatever works is what I say. If a dx of autism for Charlie is what we need, so be it. Now we can get on with the healing.

Dr. Carnavale recommended all of the therapies we have already lined up (OT, speech, ABA). She did recommend keeping him in school, whether public or private, for socialization purposes. She said we live in a good school district so the public school program will probably be pretty good. I will have no way of knowing this until the next school year since we are already close to the end of the current year. I think we will try to have Charlie placed in an ELP program as opposed to a spectrum class, but this process is new to me so I'm not quite sure what is involved. I know we will have an IEP meeting with the school board to draft Charlie's educational plan and seek as many services we can from that route. Dr. Carnavale said most parents whose children go to public school continue to supplement with private therapies as long as they can afford it. I think we will go this route, but just won't know anything for sure until we actually get there. For now, Charlie will spend his summer in private therapies. I hope to start OT and speech in the next week or two. He is scheduled for an ABA assessment on May 11. We can start whenever we coordinate schedules.

Dr. Carnavale did state again that she thought he would do quite well, especially since he developed normally and was communicative in the past. She thinks the therapies will draw it back out of him. She said that he already has a great therapist right at home -- his little sister! (She was at Charlie's initial evaluation. Dr. Carnavale noted today that she is EXTREMELY social -- that is an understatement. The child will "talk" anyone and everyone's head off and shows very little signs of shyness.) She said that Addison will "make" him socialize more so than if he was an only child, and when she starts having friends over this will also be good for Charlie.

We spoke for a long time about evolving dx. She said there is a phrase that is used: "autism in regression." Jenny McCarthy and others refer to it as recovery (note, this is not the word "cure" as most don't believe there is a true cure, but that the behaviors and sensory issues can be treated to the point that a lot of these kids do "lose" their autism dx.) She said she would not be surprised to see Charlie move from an autism dx to an Asperger's dx with perhaps some underlying anxiety and maybe some ADD. Then later, we may just be dealing with some anxiety and/or ADD, possibly coupled with a learning disability as many of these kids do have underlying LDs that only come out later. This is all speculation at this point. She said to keep a copy of her report and dx because in a short time we will look at the behaviors and won't even be able to believe his progress. I hope she is right. I know my little boy can do it!!!

I am just about done with Dr. McCandless' book Children With Starving Brains. It's a very fascinating look into the biomedical world of treating autism. It does give me lots of hope, although it is also somehwat daunting to think of all of the vitamins, supplements, etc to keep track of. I highlighted the book and made notes of supplements that particularly interested me such as DMG and P5P (the active form of vitamin B6). We have to take this slow though and add things one at a time, starting with 1/4 of the recommended dose to make sure it sits well with Charlie. Our next step is to add a probiotic. I am looking at ProBio Gold from Kirkman's and Threelac to start with. All of these supplements are natural so I feel very comfortable with this mode of treatment. At the very least, Charlie will be a bit healthier.

I went out to Target today and bought some 3 ring binders and folders as I have so much paperwork coming out of my ears between doctors, therapists, information on supplements, treatments, GFCF diet, etc. For anyone interested in Dr. McCandless' research and information regarding biomedical treatments, you can check out her website at www.starvingbrains.com.

Charlie had a good day today. He was very happy all day and enjoyed a play date with his friend Jack this afternoon while mommy and daddy went to the doctor. There was a lot of stimming behavior this evening, but this is not uncommon for Charlie as he tends to be more hyper at night and the stimming seems to go hand-in-hand with that. I am going to start keeping a daily journal of his behaviors to better track his reactions (or lack thereof) to any new food or supplement we may add to his diet. This is turning out to be a full time job!