Question:

Dear Dru,

My son, Aidan is 4 years old and an identical twin.  My boys had Twin to Twin Transfusion Syndrome before they were born and had successful experimental in utero surgery to correct the problem.  Both boys have had 2 years of special ed due to an initial speech delay and (mis) diagnosis of Aidan with "severe" Autism.  They were released from special ed and sent on to public Kindergarten which they are scheduled to start next week.  I am still very worried for Aidan and don't know where to turn.

Aidan is very different than "other" children, and "other" children see it where adults have not.  Aidan is teased at school, but his brother Bryce is not.  Aidan has a hard time communicating with other children because most of his interaction involves things like "is that from this world or another world?" (?) He makes odd faces that don't seem appropriate for the situation.  He asks inappropriate questions and says inappropriate things - often to strangers.  And these things will often be filled with hostility toward them - maybe based on the fact that their skin is a dark color or the fact that he doesn't like their face  ("I don't like them.  They have a bad face." - accompanied with a scowl and growl in his voice).  He is also hostile toward anyone who is not wearing a shirt - he may start screaming and pointing at them.  One morning he woke up and told me about a dream he had where his twin brother was not nice to him.  After he told me about it, he went in where his brother was still sleeping and starting beating on him and screaming at him.  There was nothing I could do to make him understand that it was a dream and that his brother was not responsible, and that it was his own dream.  All I could do was pull him off and hold him so his brother could get away and Aidan could eventually "switch gears" and think about something else.

If Aidan doesn't get his way, he often says violent things such as the other day in the store.  He wanted some animal paper plates.  I said, "Well, we'll think about it."  He flew off in a rage in his characteristic growl and said, "Mommy, if I don't get those plates, I will cut myself with a knife!"  First of all, my children watch only PBS except for some children's videos, so where the violence or even the wording comes from is beyond me.  He may say "I want to go under water and die" or something like it too.  But I cannot even get him to understand that what I said was "maybe".  He 100% heard "NO!" And there is no reasoning to get him to hear that.  He goes into this violent mode and can no longer hear.  Then a minute or so longer, he is onto something else and has maybe forgotten all about the exchange.

(Just now he was behind me and said, "My soccer coach is going to say, 'Come on, Aidan, practice is starting." (said in a sweet voice)  Then in a dark growl, he said, “He will only say it to ME not to Erin - he will not say it to Erin!" (his sister - one year older)  Then he walked up to me and whispered in my ear very sweetly, "I love you, Mommy.  I love you, love you, love you!"  This is all out of the blue.  He will be starting soccer for the first time next week, and was just thinking about it out loud.)

Academically, he seems ok.  He can count to forty, he knows his numbers and letters.  He refuses at this point to write or draw anything other than what he calls "loopty loos." Sort of scribbling with continuous circles.  Hmm, if this adds anything to the equation, he has sort of been obsessed with anything with wheels, but specifically trains and Thomas the Train.  He used to line his vehicles up in rows.  He no longer does this.  He is very verbal and well spoken.

I know there's more, but maybe this is a start.  Any ideas?  (Aspergers has been suggested)  He was tested last year as to anything on the spectrum, but they said they could not diagnose anything at this point but that if I was still concerned, I should have him tested again at a later age.  I'm just worried that time is going by where I could get him some help.  I don't know what kind of help.

Sincerely,
Lynn Gehlbach

Answer:

Dear Lynn,

Thanks so much for your letter. I don't know anything about Twin Transfusion Syndrome or whether that has anything to do with the early speech delays or behavior, but Aidan sounds like a very unusual and complex 4-year-old.  While he may be too young to diagnose, I can certainly understand your level of concern. 

Despite the wealth of information you provide in your letter, it is impossible to diagnose Asperger's Syndrome or any other impairment, without seeing the child and doing a thorough assessment. With a child as young and complex as Aidan, I would be wary of ANY quick diagnoses. A thorough assessment is needed and it may take time to figure out what's going on.

Asperger's Syndrome and Bipolar Disorder are currently popular diagnoses and are given with great frequency. While I don’t have enough information to rule Asperger's in or out, Aiden sounds too interested in others, even though he expresses his interest in negative ways.

Given the information you present, there are four areas I would explore as soon as possible if he were my son:

1.  His moods seem extremely intense and volatile, even for a four-year-old.

2.  He may have unusual trouble, even for his age, in distinguishing his thoughts and fantasies from reality.

3.  He is "out of touch" socially.

• He refuses to draw or try to write letters.

The first three issues should be explored by a good child therapist, experienced in play therapy, to understand how Aidan views the world. This should help determine the reasons for his unusual behavior and identify the type of help he may need.  He may benefit from intensive support in working on social skills, with coaching and cuing during peer interactions. He might also be taught some relaxation, impulse control, and self-management strategies.

The third issue may benefit from work with a Speech and Language Specialist. Despite Aidan’s good verbal skills, his use of pragmatic, or social, language is not appropriate and, depending on the reason, speech and language therapy may be useful.

The fourth issue may warrant an evaluation by an Occupational Therapist to determine whether the problem is behavioral or based in fine-motor deficits.

Since Aidan is not currently in special education, I'm not sure how any of this would be done.  You may need to start with your medical provider or armed with the information you provided me, request re-evaluation for special education eligibility.

Aidan will probably have a very hard time adapting to a Kindergarten classroom.  If he has behavior problems in class, school personnel may request the services of a behavior specialist. If so, make sure that the behavior specialist starts by looking at the function of Aidan’s behavior. Your letter suggests that he craves attention and feelings of importance. If this is the function of some of his behaviors, he needs to be taught skills to meet these needs in ways that fit the norms of a classroom community. Some modifications in the environment will also be needed. By no means will a simple reward/punishment system be appropriate. It will be most helpful if the therapist collaborates with the classroom and support staff.

This must be a very difficult time for your whole family. I wish you well.

Dru Saren