So we went to see the neuro-psychologist for Lilly today.  It was very long and thorough.  The appointment was 4 hours long.  The doctor and her assistant an, Occupational Therapist played with Lilly and then I talked with the doc for a long time and the OT assessed Lilly.  Ironically I knew the OT well from my job in Early Intervention Autism Services.  So, that a little awkward at first but she did great with Lilly.  

Then at the end after the OT and the Doc meet for what seemed to be the longest 30 minutes EVER to go over her evaluation and come up with a diagnosis.  I sat in the other room with Lilly waiting, so anxious and so nervous.  When the doc came out and said she was ready to talk to me, my heart was pounding in my chest and my hands were so shaky.  We sat down and she went over things and showed me that on paper Lilly came out with classic autism on the spectrum.  But, after watching her, talking to me, reviewing all her EI evals and talking with OT about her assessment, she thought she fits PDD/NOS much better.  Basically PDD/NOS (Pervasive Developmental Diagnosis/Not Otherwise Specified) is a high functioning autism diagnosis in which the child meet at least 2 of the criteria for autism but do not meet all the autism criteria and so the other non autistic skills usually make them high functioning.  She said in her opinion Lilly fit PDD/NOS perfectly and has the type of autism this diagnosis was designed for.  She said her autism concerns were the social issues with other kids, lack of emotional attachment to most ppl beside DH and I, her extreme sensory issues, and her behavioral issues.  She actually tested at age level and higher than age level for her developmental cognitive, speech and motor skills, which is GREAT!   

The doctor said said PDD/NOS is the one autism diagnosis that professional believe it is possible to lose. She said she can not with any certaincy make predictions as to where things will go in the future.  But, she  said she would predict that Lilly's autism with either develop into aspergers in the next 2-3 years or she will lose her autism diagnosis and it will become an ADHD one with possible OCD and or ODD.  And she said that the amount of intensive therapy she is able to receive will determine that path more than anything. 

So, I am obviously slightly saddened to know Lilly has an autism diagnosis but very encouraged by her prognosis and  am ready to push for TONS of intensive therapy!  She is recomending 10-15 hours a week of Floor time play therapy (what my agency does), 2-5 hrs a week of very low key non decreet trial ABA, and 2-3 mornings a week at a prechool/nursery school with a very structured schedule.  Those hours are gonna be hard to get, but I am gonna push for them and get as much as I can.  And then she wants to reassesss her in about 3 years, 6 months before she starts kindergarten.  So at a minimum she will have her autism diagnosis for 3 years, then we will see.

I am worn out emotionally from the day.  But both DH and I are happy Lilly will get the services she needs and feel the Doctor got it 100% right!  And I am feeling very proud of myself and my Mom's intuition and for pushing for something I really believed was there and many others disagreed with me on.  I have just known the autism was there for a while and have questioned my judgement on it so much that is why I pushed and got the provisional and started services.  But, this time I should have trusted myself! 

So, Thanks for all the continued support and encouragement!

Kelly
 

Tags: autism, pdd/nos

Add A Comment