Adopted Child from Russia - Developmental Delays /Potty / Autism?

[kmolter]

Nearly three years ago, my husband and I adopted two three year old boys from Russia. They are not related biologically. They spent their first three years in an orphanage. Our older son has caught up to his peers at this point and is doing very well in kindergarten.  
   Our younger son is the cause of my concern.  From the medical reports we have, he was born about six weeks premature, was not walking on his own when we first saw him at 2 1/2 years of age, but was doing so when we brought him home two months later.  He weighed 25 pounds (as did our older son). We have had him in speech for over two years, and six months ago found a center that specializes in kids' therapies.  We moved his speech there and added occupational and physical therapy.  This place has done wonders. He has begun to speak and is now saying sentences but is not quite holding a conversation yet. We know he has sensory integration issues, and the OT has been helping so much with that.  He really has made amazing progress the last six months.
      He is still not potty trained, and this is a big concern.  We're taking him to a nurse who specializes in potty training the special needs child who has helped us put him on a schedule, so he does pretty well with urination... we're down to zero or one accident a day. He understands what to do, seemingly... I'll ask him what to do when he needs to "go" and he says "run to the potty" but he still poops in his pants, apparently without realizing it.
   He has attended the preprimary impaired program at our local intermediate school district for the last two years. They tested him for autism and he "qualified" for their program, (they have never given us a full report) but he sure seems like a kid who is joining the world rather than retreating from it. Eye contact continues to be an issue, but that is improving. He demonstrates some arm-flapping only when he gets really excited; that has been reduced significantly. Socialization with normal kids is hard for him; the language issue may be a factor in this.
   We just started him on Stratera to help him calm down and attend more to fine motor activities. Our doc has been encouraging, saying he has made great progress; his therapists were adamant that he not be put in an autistic program, that he is not autistic;(they treat lots of autistic kids).
   Our questions: 1)Could his potty training problem be a result of his prematurity and institutionalism and subsequent delays? 2)Is there a physical condition that he might have that could cause him to not "feel" when he has to go and what kind of doctor could tell us if this is the case? 3)Should we just give him more time? 4)How is autism determined? Through a neurologist? Will he take into account our son's history? 5) Could he have suffered brain damage in Russia and how is that diagnosed? Could that be a factor? 6)How do we find a doctor who can help us determine what's going on with him?
   We are desperate for some answers!

[Kevin Kennedy, Ph.D.]

In a general sense it is clear that your son displays some developmental delays in a number of areas. While that might be instrumental in his incomplete toilet training, at his age it is best to rule out any physical explanation. A pediatric gastroenterologist would be an appropriate physician with whom to consult. It never hurts to be patient and supportive when it comes to toilet training, and if your son were younger I would not suggest any specialized evaluation. It is his chronological age that suggests an evaluation might be in order. However, it's important to recognize that, due to his developmental status, he is in most areas like a younger child.

Autism is one condition along a spectrum of conditions called Pervasive Developmental Disorders. Within each condition there is also a spectrum of severity. Some children may display mild forms of autism. Some children display some 'autistic-like'  traits, but do not have the degree of dysfuction in socialization and communication that would be true of autistic children. Children with Asperger's Disorder would be examples. The diagnosis is dtermined by careful clinical assessment of the child's developmental status and symptoms, and is best done in a multi-discipline setting. Whatever genetic vulnerability he possesses is certainly exacerbated by his early experiences.

It would be prudent to have your son evaluated by a team of professionals, including developmental pediatrician, developmental psychologist, child psychiatrist, speech & language therapist and occupational therapist (sounds like you're already all set re: the latter two disciplines). It could well be that he displays at least some neurological immaturity; you already know that he displays other neurointegrative conditons  (e.g., sensory integration problems, ADHD).

[Very Savvy]

Your child's history raises several issues and concerns.  

If your son was born only 6 weeks prematurely, it is unlikely the cause for his various developmental delays. Most 34-week gestation babies do well.  

Children who have been insitutionalized for their first 3 years typically manifest many delays, though delayed walking is atypical even for this population.  Although it sounds like he is making gains in many different developmental domains, it is quite possible that your child is suffering from more than "post-institutionalized child" syndrome.  

It is very difficult to delineate between autism and "postinstitutionalized child syndrome" since both groups can exhibit lanaguage delays, sensory integration issues, and deficits in social interaction.  The history of delayed language, flapping, sensory issues, and poor eye contact do indeed suggest an "autism spectrum disorder" or "pervasive developmental disorder" (PDD) of an uncertain cause.  As for treatment services, your child would likely do well being placed in a special education class for high-functioning autistic children, though review of recent testing by a professional would be required to verify this. It is possible that an inclusion class may be adequate if functioning is high enough.  Althoug grade retention is seldom recommended, it might be very prudent for your son if it would separate the 2 boys grade-wise and give the delayed one more time to master English and to develop more normal social skills.

The insitutionalization is the likely "smoking gun" causatively, but it is quite possible that other factors are involved as well.  Although you could see a child psychiatrist or child neurologist for the autism evaluation, you may be best off seeing a developmental pediatrician -- preferably one with experience with Easter European adoptions.  Consideration should be given to a limited medical work-up for the developmental delays. A DNA test for Fragile X and a routine chromosomal karyotype would be recommended, and you can discuss these with your pediatrician or consulting developmental pediatrician.

The delays in toileting and motor skills raise the issue of overall intellect or cognitive functioning.  Your child's IQ has likely been estimated as part of previous developmental evaluations.  This can be difficult to assess in children like this, since language is impaired and there can be large disparities between verbal and non-verbal skills.