So, we finally had our appointment for Max to see a psychologist to rule out autism, or not. I don't care about the diagnosis so much, but we needed an official diagnosis to see if he qualifies for this Autism Waiver program that provides 20 hours/week of ABA therapy for two years. The psychologist was great and Max seemed to really like him. He doesn't always like men, but he warmed up to this guy and even sat on his lap for a minute. He didn't even hide his face until the end of the appointment (we were there just under two hours and it was cutting into nap time). I explained to the doc what brought us to this point, and although Max does seem 'different' than his peers with Ds, I thought that Max may just be 'extra' cognitively delayed, although his speech therapist insists he is autistic. So we talked a lot during the appointment as to Max's behaviors, autistic-like and others, and he attempted to engage Max in play and communication. At the end of the appointment, he said he didn't think Max had autism, that he seemed like a 'typical' kid with Down syndrome, but could easily be extra delayed as I had mentioned. BUT, then he scored the test and said the result showed PDD-NOS (pervasive developmental disorder, not otherwise specified), also a spectrum disorder, but not autism. He said he would not give the autism diagnosis because Max is so social, and that is key in an ASD dx. He also assured me that Max would still qualify for the waiver with that diagnosis as it is a spectrum disorder. I was really quite happy with that. It seemed we had the best of both worlds - no autism, but still get the ABA therapy. But then I got the report back.... here is the summary. It looks like autism to me!? and ADHD.... hmmm.
"My understanding of the ADOS is that a score of 0-6 is no ASD, 7-11 is ASD, and 12+ is classic autism." Max's score is 15. I do know that different parts of the test are scored and then added together. So maybe Max scored high in certain areas and low in others that make a difference.
I've given the report to the Autism Waiver people and expect to hear back in the next few days as to whether he qualifies for the ABA therapy....
So confused... **Update... So I took the report to show Max's speech therapist and she laughed sarcastically. PDD-NOS isn't even a diagnosis anymore! (although, technically, I think it goes into effect when the new DSM is updated and published this May) The DSM (Diagnostic & Statistical Manual of Mental Disorders) recently changed the ASD definition. From the new manual (http://psychnews.psychiatryonline.org/newsarticle.aspx?articleid=1558424): "Possibly the most significant change—and certainly one that received much public scrutiny—is the consolidation of DSM-IV criteria for autism, Asperger’s, childhood disintegrative disorder, and pervasive developmental disorder-not otherwise specific (PDD-NOS)—into one diagnostic category called autism spectrum disorder (ASD). That change reflects the fact that much research has indicated a lack of concordance across clinical centers treating autism in how the four DSM-IVdiagnoses have been applied." other info: http://www.autismspeaks.org/science/science-news/top-ten-lists/2012/field-trials-suggest-new-criteria-diagnosing-autism-reliable
So no more PDD-NOS, or aspergers - it's all just autism (ASD).
Anyway, his ST said with his score of 15 on the ADOS, he DOES have autism! She also explained a few things about Max and what she sees as his autistic traits - like how he is off the charts in certain areas (like gross motor), so that doesn't jive with him just being extra delayed. It's his lack of understanding how to communicate that is the key. I mentioned his lack of pointing as maybe being just a cognitive delay and she said that is something that is 'learned' very early on and is clearly a sign of autism in Max... (I can't remember exactly what she said, but it made more sense than it has in the past.)