Do I see it or do I not?

In follow up to the last blog regarding the Autism spectrum, I'd like to take the time to address the most asked question I get. Do I see John as Autistic?

To be perfectly honest, there are some days when I think, "yeah maybe they're right" and then other days when I feel that "autism" isn't John's problem. There are things about this syndrome that make it difficult to really determine whether John falls within it or not. The fact that "every child is different" and shows a varying degree of symptoms is one of those things. The other is that when John is around other children with it, parents of other children with Autism, therapists, etc., they often state to me that they are surprised with the autistic diagnosis so young and if "he really has it, it's mild".

Before I go on, I want to make it clear that I KNOW something is "not right" with John's development. He is significantly delayed in many areas and has behaviors that are not 'normal'. That is why I am learning all I can about all of the things that affect John, his behavior and his development. He has very scattered skills, with very low attention span, and is easily distracted.

The more I am reading (and writing) about SPD (Sensory Processing Disorder), the more I believe that John has sensory issues. Now, most autistic kids suffer from SPD as well, but not all kids with SPD are autistic, but the pattern of behaviors (including limited eye contact) are associated with SPD.

Now, I'm not saying John is not autistic, by any means. I'm just starting to realize what "at risk" behaviors truly are and why an early intervention program can help kids whether "at risk", autistic, or just developmentally delayed. The "label" of autism right now gets the help needed in the early intervention programs. At 3 years old, he will be re-tested through the school system to determine whether they believe he can continue through the public school system.

****Now, all of this leads me to my point. I will not "know for certain" if John is autistic or not, until a medical doctor, that is NOT tied into giving me some sort of funding or early intervention help, gives me that diagnosis. We are awaiting confirmation that John will be seeing an autistic specialist in October to give us a full evaluation. That diagnosis will be the one that will be the determining factor whether I have to fight for services (and what kind of services to fight for) or not. I am not going to let the school system tell me he isn't autistic or he no longer needs services. As his language develops and he gains certain skills through early intervention, it will become clear whether or not he is autistic, but someone who is granting or denying me service will not be the ones to give me that diagnosis.

Determining if John is/was eligible for Regional Center's services had a lot of contributing factors, including which Regional Center we got to go to. Some Regional Center's have more funding than others, for example. The first round is to pass an over the phone interview with the caregiver to determine if an evaluation should be done. I was told that every Mondays a committee meets to go through the calls from the week and determines which children can come in for a full evaluation. Two therapists hold the 2 1/2 hour evaluation and determine on the spot whether he qualifies for service or not. It was at that evaluation when they told me John was "at risk" for Autism and gave me the "now that your child is autistic" packet. The written evaluation came about 1-2 weeks later, stating that it was an "autistic disorder". That diagnosis qualified John for 25 hours a week of service, although we are not using that much at this time.

To sum it up, I'd like to answer the question by saying that the label John has right now doesn't matter to me. There is a reason why he qualified for service and that is because there is a significant developmental delay. I want to do everything I possibly can to help John progress. I want a medical doctor's second opinion because I don't want funding issues to interfere with his diagnosis. I also don't want the wrong label placed on John. As I am learning about disorders like SPD, I am discovering about different means of therapy. While classes like speech and early start pre-school teach John to do specific tasks to fit into a societal mold, occupational therapy helps to determine what it is that causes John to be delayed in those areas. It seeks to find the underlying cause and fix it through structured therapy. Right now, I'm fighting for the Occupation Therapy Evaluation that will determine if John would benefit from OT/SI therapy. Being pro-active and being involved in your children's therapy and "individualized service plan" (Regional Center's term) is what determines the success for your child. Finding the right 'label' is important in determining how to help.