Expert: James Michael Roan - 5/27/2007

Question
QUESTION: Hello,
We have a 39 month old boy who has been speech delayed (testing 10
months to a year behind) for quite a while.  He just completed his testing for
the early childhood program at school and quailifies for it.  Three months ago
we made an appointment with the child development team at a large clinic to
have him tested for Autism or other disorders.  The appointment is in 2
weeks and after all the testing the school did we are not sure if it would be
overkill to take him.  The school psychologist tested him (she also has a child
with Autism) and said he shows no real signs of Autism.  His speech problem
is both a receptive and expressive delay.  He has had some behaviors that
made me think he was at least on the spectrum somewhere ie:lining cars up,
limited pretend play, inapropriate social responses..laughing when someone
is crying or coughing, inability to back and forth communicate verbally,ability
far beyond his age to recognize all letters both upper and lower case
,numbers, colors and shapes.  Will getting more testing help us in any way?  
We will be getting the services he needs through the school , so will getting a
medical diagnosis be necessary?  I am having a hard time cancelling this
appointment and I don't know why.  Does he need more testing?

ANSWER: Hi Kim;

He does have some behaviors associated with autism. He may have a high functioning form of autism such as Asperger's Syndrome/PDD-NOS. It is important to follow through for a correct diagnosis so the source of his problems can be effectively and appropriately dealt with.

Kind regards,
James

---------- FOLLOW-UP ----------

QUESTION: Hi James,
Could you tell me what effective and appropriately dealt with means?  What
sort of intervention would be needed if he were indeed on the Spectrum?  
Also are there video examples of Autistic behavior on the internet ?  I have
searched and searched for something to compare my son to and have found
very little.  It would help me figure out what to do.  Thank you for your
time...just talking to someone about this is reassuring.
Thanks again,
Kim
ANSWER: Hi Kim;

This may take awhile for me to answer your question regarding what "effectively and appropriately" means in this context.

Most, but not all, boys who have undiagnosed Asperger's Syndrome (AS)or high functioning autism (HFA) receive a series of misdiagnoses. Generally, their problem with "executive functioning" is misinterpreted and thus misdiagnosed as attention deficit hyperactive disorder (ADHD) and is wrongly medicated as a result. Next, due to their rigid cognitive style and strong sense of moral justice, they often have explosive behaviors, which is misinterpreted and thus misdiagnosed as oppositional defiant disorder (ODD) and is either medicated and/or the child is recommended to go to a behavioral support room. The AS child's extreme difficulty with processing social information then often leads to obsessive-compulsive behaviors as a coping mechanism and again is misdiagnosed as obsessive-compulsive disorder (OCD) and is either medicated or treated as the central problem when it is not. Finally, due to daily stress associated with social processing difficulties, executive functioning problems, anxiety ensues and turns to depression for which the child is misdiagnosed once more as attention deficit disorder (ADD). Meanwhile the child is older and has lost several essential years of "appropriate" interventions because they have been misdiagnosed and thus medicated inappropriately. By this time they have become victimized by the systems put in place to protect them because their real problem was never really understood.

I have heard from dozens of adolescents and adults who received the diagnosis late in life and they have reported that it gave them some degree of solace and comfort to know that their problems with people were due to a syndrome and not themselves as a person.

My friend, who had cancer, was misdiagnosed as having body aches and muscle pain due to aging and working too hard in the garden. As a result, he did not receive the correct treatment and died. For an intervention to work it must be based on a thorough assessment of a child's strengths and weaknesses. A child who "looks" autistic can have other similar looking conditions such as a nonverbal learning disability, lead poisoning, fragile X, Rett's Syndrome, or Childhood Disintegrative Disorder.

I hope I have not confused you with all this. I don't know of any videos on the Internet and that really would not help you a whole lot since autistic and AS children look quite different from one another. You need a thorough assessment of social communication, social behavior with peers, IQ, and motor skills. Autism and AS-specific tests should used as well. Let me know if you have any other questions.

Kind regards,
James

---------- FOLLOW-UP ----------

QUESTION: Hello James,
Your information was very enlightening.  He was tested at school with the
PEP-R (psychoeducational Profile revise)  after an hour they felt they had
enough information to stop.  Do you know anything about the reliability of
this test?  Also , if he were ASD instead of just having a language disorder  
what treatments or therapy would be used or are the same therapies used
with both problems?  One more question, what typically is the general
outcome of children who have language disorders or ASD when they start
intervention at this age?  Do they tend to have problems the rest of their
school career? You have been very helpful with my problems...thank you!
Thanks again,
Kim

Answer
Hi Kim;

You are more than welcome. The PEP-R was popular 10 years ago or so because we didn't really have any autism-specific assessments. That has changed.

Yes, the interventions would/should be different. Language disorders, in general, differ from language problems associated with autism. In general, language disorders are brain-based problems where as language problems in autism are caused by social thinking delays or impairments. Only a very small amount of information is contained within a sentence of speech. The rest of the communication is gleaned from the speaker's body language, eye contact, facial expression, and vocal inflection. Children with autism primarily struggle with this part of communication: the nonverbal part. That is because the nonverbal part is socially based. Children with autism suffer from low social knowledge and interest so communication development is delayed compared to others.

The best therapy is one where children participate in small groups with sing-a-longs, where children are provided the opportunity to learn how to imitate peers and to anticipate what comes next by paying attention to the facial expressions and intonations of teachers and peers. A well structured Early Intervention program may meet these criteria. The single most important criteria, however, is the ratio of teachers to students. The more teachers, the better. These programs are the best for language delayed and autistic children. Interventions, however, will be different as time goes on. The outcome is very good, but children with ASD will always have some degree of social dysfunction.

Kind regards,
Jim