Expert: James Michael Roan - 2/3/2006

Question
My daughter is 3 and I am currently in a process of evaluating her (throught school system) for possible disability. She has following symptoms:
- not interested in playing with kids here age
- not showing, bringing pointing etc objects of interest, but she would lead me by hand and recently can point to an object when asked
- not answering or even reacting when her name is called
- pronoun reversal
- not concerned with my coming and going, can be left with strangers without distress
- never calls out when left in her crib, can stay there for hours talking to herself
- attached to unusual objects like little wooden block, but doesn't like stuffed animal, dolls, etc
- not imitating
- does not like climbing playground equipment, or walking the stairs by herself
- chews her tongue and

But:
her vocabulary is good, even very good for her age and she talks constantly (mostly to herself)
she loves books, puzzles and shapes
she can maintain eye contact if she is interested
can follow directions if she likes the activity
plays pretend very nicely like cooking
or playing with her school house toy with little people and the bus
I had her evaluated recently by a develompmental pediatrician and she said she has language disorder/delay but not autism because of eye contact & pretend play Rest she said are just her personal style.
I tried to live with this diagnosis and be relieved but when I look at  my daughter it just doesn't sound right.
The thing that complicates everything is that Aleksandra does not speak English (only Polish) so of course it is harder to evaluate.
The devlopmental ped did not see Aleks with other kids, only in her office (two times). When Aleksandra's preschool school teacher filled up the questionare she put most of my observations above and even more as 'very true' (on scale 'not true at all', 'sometimes true' and 'very or often true'). She marked avoids eye contact as very true along with acts too young for her age, withdraws into her own word etc. she even put rocks her body as sometimes true which i don't see at home.
The developmental ped is supposedly very experienced and sees autistic children every day. Do I have a reason to question her diagnosis?
If so, how do I make sure she is evaluated correctly when school does it? Is it even important what kind of label she gets?

Answer
Hi Anita;

What a challenging question for me to address! This can be a bit tough to move around so I will commit to my opinions, which may be unpopular with my colleagues, and speak direct to you.

Please keep in mind that I am NOT DIAGNOSING anything here.

Although most professionals in the research formally concede that it is difficult/impossible to diagnose Asperger's Syndrome (AS) before the age of 5, the profile you have provided me with possibly fits with AS. I am NOT saying that your daughter has AS, however in the interest of early intervention, I don't think it can be ruled out and should be carefully considered by someone who works with young children who have AS. For AS to be properly diagnosed the child MUST be observed with peers in multiple environments, especially unstructured ones like lunch and recess.

The school district can often provide assessments that help diagnosis autism/PDD-NOS/ AS, but are often reluctant to do so for legal reasons. You must, therefore, find an expert in this area. I suggest looking at a team at a nearby university or children's hospital. Most researchers agree that PDD-NOS, high functioning autism, and AS are really the same thing.

I am not second guessing your developmental pediatrician either, however without observations of your daughter among peers, it is really difficult to diagnose AS, especially in girls who are more social, make better eye contact, and are for those reasons often undetected. If you need more answers let me know.

Kind Regards,
James