Neuropsychological Evaluation

Preliminary Diagnosis: keeps High Functioning Autism (HFA)

We went today to Children's Hospital to have Jonathan re-evaluated. We spent 6 hours with the 2 doctors that saw him. One interviewed both daddy and me while the other evaluated Jonathan. She did a number of cognitive tests. Towards the end, the Dr. that interviewed us worked with Jonathan for about 1 hour.

After our interview was over, she scheduled an appointment for August 21st to review the results. They use a computer program to analyze the data and they need time to enter all the results and review the output before they can tell us what is going on. However, she did tell us that although Jonathan has made outstanding progress in the past 3 years, he is still on the spectrum. She mentioned that she was going to recommend they leave the diagnosis as High Functioning Autism although PDD-NOS is most likely the most appropriate diagnosis at the moment. But since he has a little bit of speech echolalia which is considered repetitive behavior (this is the only repetitive behavior they could find), she is going to use that to leave the diagnosis as is. Her reasoning is that it will allows us to continue to receive additional help.

On one end, I understand what she is saying, but given that we have gotten very little support from the government with the diagnosis (actually, I avoid mentioning it to the insurance because they will reject claims) and the school recently denied summer school services because he does not qualify (too high functioning) to receive county services other than speech, it bothers me that she is not changing the diagnosis to PDD-NOS. I may fight it on the 21st. It marks progress in my mind, which after all the hard work, we deserve a step above HFA. Actually, I would say he is High Functioning PDD-NOS, because there are different levels of severity in PDD-NOS as well and he is high functioning despite the area in the spectrum where he might fall. Perhaps the original diagnosis in 2005 was incorrect and should have not been HFA. They only gave it to him because he smiled and at times would look at the Drs. in the eyes. But he was sooooo lost and had soooo many sensory problems, that all the therapists that we had at the time mentioned to us that he was more severe than HFA. So one of the two diagnosis is wrong, because I don't understand how after the 180-degree progress he has made in 3 years, he is still in the same bucket.

In my mind, I knew he is PDD-NOS. I mentioned it in one of my blogs a few weeks back. His DAN! thought he was going to get re-diagnosed as Aspergers, but I knew he is not Aspergers. Aspies have different behaviors. They are subject matter experts in a particular topic and speak like professors. Jonathan does not fall in that category. I actually discussed it with the Dr. this morning and after a brief break that we had, she consulted with the other therapist and then told me that he does not qualify for Aspergers for the same reasons I just mentioned above. I have read enough literature to know that he is still in the spectrum and given where he is right now (particularly in speech and some social behaviors), but the improvements or total recovery on the repetitive behaviors, sensory problems and anxieties, that puts him in PDD-NOS. It relieves me that today's Dr. also agrees that PDD-NOS is probably the best diagnosis for him right now (even if she doesn't put it in the report. We'll see)

Somehow, deep inside, I was hoping the diagnosis would change to something that would show significant progress. I need it. But on the other hand, I am happy that Javier came with me and heard from the Dr. that Jonathan is still on the spectrum because he thought (or perhaps hoped) that Jonathan had recovered although I kept telling him that he still needs more work. We have been talking about the types of therapies that I would to do the next year to help Jonathan keep advancing (more auditory processing, neurofeedback, more HBOT, and continued supplements) and Javier kept asking me how much more we have to do because compared to how he used to be, he seems recovered. Javier's biggest worry is our financial situation since all these therapies have been very expensive and we have received very little coverage from our insurance and are in major debt. But today was an eye opener and the bottle of Johny Walker Blue Label will remain closed until we get that letter from Children's Hospital. I need to strategize and I know we will have to make some sacrifices because we cannot continue to do these therapies without a major financial impact. But I want to see him fully recovered. It is my dream and I hope to see it one day. I want my kids to have a normal life, to have friends, do well at school and be happy.