Asperger’s Syndrome and Kennedy Krieger Institute

On June 2nd, we spent the day with a NeuroPsychologist at Kennedy Krieger Institute.   KKI is an internationally recognized institution which helps children with developmental disabilities.  They have a high focus on brain, spinal cord, and musculoskeletal related disorders.  We have been there a couple times before but have not met with this department.  This time, we were sent over to have Haven evaluated for Asperger’s Syndrome – an autism spectrum syndrome.  When we first started to try to diagnose Haven in 2006, we started with this syndrome (along with Prader-Willi Syndrome), but we were told this was not her problem – it was a problem with the parents.

Asperger’s Syndrome is an autism spectrum disorder.  Asperger’s Syndrome is known for significant difficulties in social interaction, along with restricted and repetitive patterns of behavior and interests. Although not required for diagnosis, physical clumsiness and atypical use of language are usually part of the disorder.

Haven worked with the doctor for over 6 hours.  She completed some testing in math, reading, and drawing.  She obviously was able to hold a very grown up conversation with the doctor – Haven has an amazing vocabulary.  She read and read to the doctor.  After all of her testing, we met with the doctor and reviewed her findings.  She was most concerned with Haven’s social skills and rigid personality.  We informed her about Haven’s random lists – she loves to make lists.  She has notebooks full of dot coms (web sites that she is allowed to visit or wants to visit but can’t).  Haven has to stick to a schedule – if the schedule changes without her knowing, she tends to freak out and panic.  She still has issues with getting into a car or discussing leaving the house.  She will do anything she can to stay home.  She also has “hoarder” tendencies that are very concerning.  Throwing away anything of hers – even paper – is a huge fight.

So Haven will begin meeting with a psychologist regularly to hopefully overcome her anxieties and social issues.  She is also to start a social class with other girls her age that have been diagnosed with Asperger’s Syndrome.

Haven is in mid-diagnosis I guess you could say.  She shows many of the signs of Asperger’s Syndrome, but due to the over-diagnosis of this disorder and the harm it could cause her health wise to be diagnosed with this, we have decided not to diagnose her on paper yet.  Asperger’s Syndrome shows many of the signs that ROHHAD also shows – this could be devastating for Haven.  It could cause us to dismiss a sign showing the doctors that her ROHHAD is progressing, ultimately dismissing an issue as autism that is an underlying new symptom in ROHHAD.  One of our doctors also feels this is a diagnosis that is being to freely given to children – like ADHD.

The psychologist said there is medication….but we have already informed them 1.  we’re not  big fans of psychology, and the fact we were there after 2 years of being asked to go should be good, and 2.  we don’t medicate our child for something that is naturally part of her being.  So that is ruled out.  She isn’t a normal child…..but then again, what is normal for some is not normal to me!

Right now, we are waiting on the new psychologist and will begin a scheduled routine with Haven while KKI works on some other areas that may be of help for Haven.  We had a good visit, a good Skype follow-up, and will meet with KKI again in about a year.  Now on to the closer to home doctor! 🙂

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