Confused Diagnosis

[SueNYC]

Our child (now 9) has been confounding a multi-disciplinary team at a famed Child Development Center in NYC for about three years (he is 9).  They have gone back and forth between diagnosis of ADHD, ODD and perhaps Aspberger's (he has slightly autistic traits at times).  The Aspbergers has probably caused the most disagreement within the group.  He has been through an autism expert for  testing (she didn't think so), a neuropsychologist (he didn't thinks so) and a psychriatrist who specializes in Aspbergers (she sees fefinite traces of it).  His regular psychologist thinks that he shut down because the school he was attending was challenging enough and that he has severe ADHD.  They say his high IQ is making testing difficult because he has the ability to compensate.  How does one compensate for lacking a "Theory of Mind."   He does have severe troube with tests that evaluate executive dysfunction and though he can recall all of the parts of an abstract drawing he cannot replicate it.   How does one know if one is dealing with a highly gifted child with an inflexible personality or a child with Aspergers?  And why do the boards say gifted or Aspbergers (he has no particular interest he is obsessed with) - can you be gifted and also have Aspbergers.  Also his comprehension (99.9%) and his inference abilities (89%) are pretty high - wouldn't that rule out Aspergers?  He doesn't like to work in groups and does use self-talk to calm himself down (his most autistic traits).  He is a bit ego centric in his interests.  Psychiatrist is willing to rediagnoses him - but does it really matter?  My husband is also worried that an autism diagnosis could limit further career potentials as the child is quite bright.  He currently attends a school for children with Aspbergers because we felt like that was the best placement for him - even without a full diagnosis.   We just don't know who to believe.

[William L Holcomb, Ph.D., BCBA]

Seeing that your child is struggling and being unable to get a definitive diagnosis has to be one of the most frustrating experience a parent can have (although it may be tied with being unable to find the “right” program for them).  

From your description of the professionals who have seen your son, it seems as though you have been very thorough.  One of the difficulties in differential diagnosis of children similar to the way you describe your son is that all of the purported diagnoses you mention are behaviorally defined (therefore there is no “blood test” or other biological marker to definitively settle the question of diagnosis).  Therefore the best professional to diagnosis a person on the spectrum is someone with the proper credentials who has years of experience observing, evaluating, and working with persons on the spectrum and their families.  If the “autism expert” met these criteria and did not diagnose your son on the spectrum, then I would believe her.  

You asked several questions:

How does one compensate for lacking a “Theory of Mind”?  
Theory of mind is a construct to help describe a number of behavior deficits is some people; typically related to perspective taking, joint attention, etc.  These skills, or at least rudimentary components of these skills, can be taught to many individuals.  While some may argue that teaching these skills does not address some “core deficit”, instruction in the behaviors that constitute the criteria for concluding an individual lacks a “Theory of Mind” are extremely helpful.  

How does one know if one is dealing with a highly gifted child with an inflexible personality or a child with Aspergers?
Once again I would rely on the diagnosticians.  A gifted child with an inflexible personality should be quite different than I would also encourage you to look at the functional impact of your child’s behavior.  Another issue is what exactly constitutes “gifted.”  

Why do the boards say gifted or Aspergers (he has no particular interest he is obsessed with) - can you be gifted and also have Aspergers.
Part of the criteria for a diagnosis of Aspergers does include a restricted and repetitive behavior or interests.  I believe it is entirely possible to have a diagnosis of Aspergers and perform well above average on one or more areas on traditional cognitive or academic assessments.  

His comprehension (99.9%) and his inference abilities (89%) are pretty high - wouldn't that rule out Aspergers?  
I do not believe that these scores are incompatible with a diagnosis of Aspergers.  Depending on where you have derived the percent scores you cite, the comprehension and inferential behavior on the assessment may be different than the comprehension and inferential behavior that is assessed for a diagnosis of Aspergers (particularly regarding inferential tasks).  

His psychiatrist is willing to re-diagnose him - but does it really matter?
It certainly matters with respect to accessing particular services and the manner in which a treatment is approached.  I would encourage you, however, to look carefully at your child’s individual needs by carefully assessing both the behaviors that interfere with him demonstrating his
Could an autism diagnosis limit further career potentials?
I really don’t know that answer to that question, although it is certainly a valid concern.  As your first concern is to be certain that your child is receiving the services he needs to reach his full potential; I would continue to look for help in that area.  If there is a particular diagnosis that “fits” your child, and helps direct those responsible for his education and treatment, then I would accept the diagnosis and move forward.  


Below are two Websites that you may find helpful. While I am not endorsing either website, it may help you to further answer some of your questions.  

http://www.aspergers.com/

http://www.cfw.tufts.edu/topic/3/67.htm

[littlebartie]

I am autistic- my parents treated me like a normal child- and today I am very successful. I hold a job, as a customer service person at a YMCA- very unusal for someone with autism.

An autism diagnosis isn't a death sentence!

If you want to email me you can- ***@****

Kayte Barton

[SueNYC]

Dear Kayte,

Thank you for your response.  We don't know if he is autistic - neither do the doctors.  We aren't scared of a diagnosis.  We have had autism experts look at him for over 3 years and they are confused.  They can't figure out is it autism or just a rigid personality.  His ability to make inferences is incredible - something an autisitic person supposedly cannot to - but one doctor has seen a few exceptions.  We are just wondering if it is worth the bother to get him classified as such or just leave him as ADHD/OHI.

[littlebartie]

Hello Sue-

I too was diagnosed as adhd- and wasn't a fitting diagnosis! And diagnosed with seizures- but turned out to be allergic to all seizure drugs-

Keep fighting- follow what you think- if he is autistic a diagnosis will get you better services.  I unded up not being diagnosed until I was 19- because the diagnosing guidelines changed. And a diagnosis helped to get me social security, a social worker and into the system.

feel free to ask me more questions if you need to.

[SueNYC]

Dear Dr. Holcomb,

I thank you for your response.  As I am learning, it is not the label but the help.  We put him into the Gersh Academy which specializes in Asperger's children.  They use Dr. Greene's methodology of collabrative problem solving which Sam seems to be excelling with.  As far as gifted, except for his writing skills, Sam, who is 9, can pretty much do the academic work of a 10th grader.  His global IQ is about a 150.  They used the NESPY the last time around.  He has amazing strengths and then some equally amazing deficits in many of the tests that test executive function.  His ADHD, which is severe in a large classroom setting, is practically non-existent when it comes to doing school work at home.  He is currently in a school that mostly focuses on children's with Aspergers.  It is academically challenging and the class size is a 4:1:1.  He is very productive there but still occassionally feels that he is not required to do work that is too easy for him - ex. vocabulary, spelling, certain math problems.    When Sam decides it is not neccessary - then all hell breaks loose.  He doesn't transition well.  He argues like a Philadelphia lawyer - and he sees everything in a legalistic manner.  Everything needs to be contractual - and he keeps you to the letter.  Of course, he can violate his own agreements.

Though he knows what is socially expected of him - his own needs always supercede everyone elses.  And at times, he does not seem to understand socially appropriate behavior - i.e. - he may comment on someone's looks, etc.  One example is that he saw a very petite man who kept his hair long.   The man had an extremely high voice to boot.   He thought he was a woman and we had to literally pull him away as he was explaining to the poor gentleman why he mistook him as a woman.  He just won't let something like that go.  We always know when it is coming because he prefaces such  remarks - "I don't mean to offend you but....."  At times, I am practically yelling INAPPROPRIATE.  

As I said, the doctors are a bit confounded with Sam.  At times, he acts perfectly normal and then there are other times when he seems to be very much on the spectrum.  NYU has pretty much passed him around to all of their experts - so I guess this diagnosing thing is tougher than it seems.  Medications have been pretty useless.

Well, thank you for your time and effort.  I ams till trying to figure out this complicated child.  We both come from families of engineers where "it is not rocket science" actually has meaning.  Honestly, there have been a lot of antisocial types running around.  We are looking back at all the quirky, but productive people in our family and just hope Sam will turn out to be one of them.