Our first visit to The Georgetown University Hospital‘s Autism and Communication Disorders Clinic did not happen overnight, so I’ll start at the point when we began looking for a place to take Raymond for a diagnosis. Shortly after Raymond’s third birthday, my wife and I were 99% certain that Raymond had autism. We were so certain that we sat down with our pediatrician and asked her where we should take Raymond. She suggested several places, like Kluge at Charlottesville, MCV in Richmond and Georgetown. My wife put it best when she asked our pediatrician “If you had a child, where would you take him?” Our pediatrician answered without hesitation “Georgetown. I’ll write you a referral.”

However, like all good things, we had to wait. We found out they wouldn’t have any openings until the spring, so decided to try a different route. In February we went to see Dr. Mary Megson in Richmond, a DAN! doctor and wonderful woman, who I will be writing about in greater detail in a later blog post. She gave us a diagnosis of infantile autism. We were relieved! Now we could get our insurance company to pay for needed services, like speech and OT. Unfortunately that was not the case.

So, we called Georgetown again. They were booking appointments then, so we got 2 appointments in late May and one in early June. Let me explain why it takes 3 appointments so folks don’t think they are trying to get extra copayments out of their patients. The fact is that the Autism and Communication Disorders Clinic uses a multidisciplinary approach, so Raymond would go through 4 seperate evaluations. The team consists of:

Dr. Stephen Mott, developmental cognitive neurologist and chief of the division of child neurology
Dr. Diane Jacobstein, clinical psychologist with decades of experience
Rita Solórzano, speech language pathologist
M. Janet Thomas, occupational therapist.

During the first two appointments, the team evaluated Raymond. First up was Doctor Mott, who did a wonderful job asking questions and discovering more about the physical side of Raymond’s disorder. Next up was Rita, who managed to elicit some response although by that time of the day Raymond was not in the mood to sit still. Our second appointment started with Dr. Jacobstein, who did a wonderful job engaging Raymond. We finished with Janet, who did the best she could evaluating Raymond in spite of the fact that he was not cooperative.

Let me backtrack for a minute. When we first met the team, we laid it out pretty clearly that we thought our son had autism. My wife said “Don’t send us home with a diagnosis of PDD-NOS, because that doesn’t help us.” We knew this from fighting with our insurance company. PDD-NOS, or Pervasive Developmental Disorder, Not Otherwise Specified, had the potential to be denied by our insurance company. Our insurer, Guardian, who will be prominently featured in a later post, specifically excluded any sort of therapy for a developmental delay or disorder.

So, the third visit to Georgetown was for our diagnosis and recommendations. We were all seated in a conference room, and we were given our report. It was pretty large and indepth, clocking in at 23 pages. Although we knew in our hearts that Raymond had autism, that didn’t make it much easier hearing it said and seeing it in print. However, the team was very tactful and sensitive in the delivery of the news, which did help a great deal. All told, Raymond was diagnosed with 5 challenges. Autism, Dyspraxia, Hypotonia, Hyperlexia and Transient Alterations of Awareness.

The Autism diagnosis is familiar to most folks, but I do want to mention one thing. Raymond was diagnosed with autism despite the fact that he did not have many of the behaviors commonly associated with autism. However, Dr. Mott was very clear and specific when delivering the diagnosis. Per the DSM-IV, atypical autism is still diagnosed as autism, not PDD-NOS. PDD-NOS is specifically reserved for children who did not meet the criteria for autism, not kids who were atypical but still met the criteria. Dyspraxia, sometimes labeled Apraxia, is a motor planning and sequencing disorder. That was really the silver bullet we needed for our insurance company to start paying for OT. Hypotonia is low muscle tone, and is common in special needs world. Hyperlexia could be either a boon or a curse, as it means that Raymond could read before age 3. If he could decode the words and understand them, it was a boon. If not, it could be indicative of other issues. Finally, transient alterations of awareness related to Raymond’s tendency to stare off into space. There was a real concern that Raymond might be having “absentee seizures.” I’m pretty sure they aren’t called that any more, but I can’t quite remember what they are called. At any rate, that meant we had to do a 24 hour EGG with Raymond to see if he was seizing. I’ll go into details about that later.

The best was yet to come. The 23 page report contained a thorough evaluation of Raymond, but it also contained 6 and a half pages of recommendations! We were really blown away by the thoroughness of the teams’ suggestions. I’ve excerpted some of them below.

7. Raymond should continue with speech and language and expressive skills and pragmatic language skills and his oral communication intervention to maximize motor issues need further exploration and appropriate intelligibility his speech intelligibility.

8. Raymond will benefit from having a strong home component as part of his therapeutic approach. The links between the classroom, therapy sessions and his parents at home is critical for carryover of skills from one environment to another.

9. Model two and three word phrases for Raymond to help him understand how to combine words into novel combinations. At present,he is using single words and rote sentences or phrases but does not appear to be using phrasesthat he has constructed himself. Use combinationssuch as: object-action (monkeywalk), action-object(Fly plane), object preposition(ball in), object-function word (cookie,yes), action-pragmatic marker(open please), etc. Also, listen to two word combination that he produces and add an element such as descriptive concept (fly big plane) or noun (ball in bag).

That is just 3 of 20 recommendations we received, and all of them were of that caliber. We credit major parts of our action plan with Raymond to the help we received from Georgetown. Not just that, the report gave us the justification to begin speech therapy, physical therapy and occupational therapy, all of which have helped Raymond grow and thrive. In fact, he met his PT goals after just 14 weeks, and has since been released.

I guess what really struck me about the team at Georgetown is their willingness to help our son. We have seen many therapists and doctors, but the ones who exemplify their profession best are those who go the extra mile for their patients. I’m happy to say that the staff at the GUH Autism and Communication Disorders clinic are among the best professionals I’ve met in my life. If you have a kid on the autism spectrum, these are the people that will help you help your child.