Autism and the Internationally Adopted Child

*before you start reading you will notice that there are lots of words like might, likely, possibly, potentially, many, etc. That is not accidental-  nothing here is an absolute.

Last week on one of the online group I frequent there was a huge flare ups of opinions after a woman posted some concerns about her newly adopted child. Opinions raged and are still raging (and name calling ensued) but at the crux of the debate were two issues. One was about being prepared for secondary disabilities that are commonly seen in conjunction with the disability that is known. The other was whether or not, in the midst of all this change and turmoil in the child’s life, can it be determined if the child has a developmental delay and more specific to that can you tell a child has autism. And the answer is you sort of can but at the same time you really can't.

So here’s another truth about international adoption. Orphanage care is just that- orphanage care and even the best orphanage is still long term group care. At it’s worst- well we have all seen the photos from Romanian orphanages. For some kids, orphanage care results in a set of issues (referred to as post institutionalized or PI). PI issues often manifest themselves as autistic like behaviors.

Which leads us to another truth about international adoption. It is traumatic and that trauma often results in behaviors that look very similar to autism. So here’s what we are left with

Many children appear autistic upon being joined with their new family, most of them are not autistic, but a few are.

Many of the behaviors that parents cite as the reasons to suspect autism, are in fact, the same behaviors that children exhibiting trauma shut down or PI issues will display. These include

not making eye contact

not responding to sound

not smiling

not talking

head banging (either with their own hands or on something like the crib)

flicking objects

rocking or other methods of self soothing

staring

I would not suspect a child who has just been placed with their new family after living in an orphanage for months or years of having autism on the basis of the above listed "symptoms" I think these are too easily confused with PI/trauma shut down and I think the vast majority of kids with THESE symptoms are likely dealing with PI/trauma and not autism

But I think there are other behaviors, ones that might not be recognized as red flags for autism that actually may be more revealing than the “normal” autism red flags.

Before I start lets first say that this is NOT A DIAGNOSTIC CHECKLIST. Even if your child shows every sign on the list it does not mean they have autism because you MUST also factor in the role their early experiences play and the trauma of being separated from everything familiar.

Let me say that again- THIS IS NOT A DIAGNOSITIC CHECKLIST. 

 EVEN IF YOUR CHILD SHOWS EVERY SIGN ON THE LIST IS DOES NOT MEAN THEY HAVE AUTISM. 

 The only way to diagnose autism is with a full evaluation using multiple assessment protocols and techniques. All this does is give you a framework to determine how likely it is that the child has autism. If they have all the signs it is more likely they have autism. If they have none of the signs it is less likely they have autism. Are we all clear on that??? That begin said- in the interest of fair disclosure, these are also generalities but they do begin to provide a framework for beginning to understand what is going on. But the truth is every child with autism is different in their presentation and for every “rule” there are also exceptions.

Things that might signal the child has concerns going beyond “normal” trauma shut down or PI issues  (particularly if they are still apparent after the first 72 hours)

- Not responding to their name. That response can be a small as quickly looking at you then turning away, or shifting their gaze- but they should respond to their name. If your child isn’t responding to their name, try having the guide say it (I still can’t pronounce K’s Ethiopian name the same as a native speaker) Also verify you are using the name they were known by in the orphanage. Many kids are known by nicknames (both mine were) and may not respond to their given names. This also assumes that the child has functional hearing.

- Not at least gazing toward an object when pointed out by an adult- Lack of eye contact is not a sign of autism in the PI child- but most shut down kids will at least briefly direct their gaze towards interesting objects when pointed out by an adult. If the child can't follow a point (as it is called in autism research) that is a huge red flag

-Flicking their hands in front of their eyes or hand flapping- I don't worry about other "stims" (rocking, head banging, etc as these are very often PI) but stimming in front of their face or hand flapping is more of a concern. Motor stims (including flapping) can certainly be PI issues but a hand flapping stim leans more towards autism whereas a rocking or head banging stim leans more toward PI issues)

- Not pointing with their index finger. Believe it or not in the US this is act
ually a fairly accurate predictor of autism- children who don't point with their index finger by 18 months have an 85% chance of being diagnosed with autism. However, there are children with autism who point with their index finger so it is not an absolute predictor. Also there are children with autism who develop the index finger point, but do so after 18 months. That said- pointing is a behavior that is culturally influenced and I am not sure that there are any cross cultural studies to determine if this holds up as a predictor in other, non Western cultures. So this one is complicated as you need to know if and what the cultural equivalent of our index finger point is. For instance in China, where pointing is done with the whole hand, so in that case pointing is not a useful indicator.

-Using the adults as a means to an end or relating to people as if they are objects. The child interacts with the adult to achieve a goal. (ie, takes the adult by the hand and drags them to the TV to turn it on or pick up a toy they want or child takes the adults hand and attempts to use their hand to turn the doorknob). Again this is one piece of the puzzle and you have to account for communication delays (either due to disability or due to the child speaking a different language) This is not the child who wants a glass of juice, drags you to the refrigerator, looks at you and says “oose” (or any other vocalization/verbalization). That is normal communication. This is the child who wants a glass of juice, drags you to the refrigerator, places your hand on the door then pulls, places your hand on the juice and pulls (expecting you to grab the juice as they pull). This child has made no contact with you verbally OR non-verbally. They are simply using the adult’s body as a tool to gain what they want. It is a subtle difference but a critical one. 

-Being oblivious to the people around them. Often a shut down child will still be taking in everything, even if they are not responding.  Pay close attention to whether or not they are paying attention to the local people- are they listening to the guide or the server at a restaurant or others speaking their language or are they oblivious to everything.  With PI, the kids will often respond to the guides, but not the parents.

So now you are seeing some red flags. But what does it mean? It means they could have autism, but it doesn't mean they DO have autism. 

So now what?

If you are a parent who plans to bring the child home no matter what- then you proceed.

But what if you are a parent who isn't sure that they can handle the needs of a child with autism? (and this isn't the forum to judge that)  But what do you do if you feel you are in that situation.

You need to try to get a complete (or as complete as possible) developmental history and consult with several medical professionals who have a significant expertise in BOTH autism and international adoption. It means that if you are in country take a deep breath and push your agency to slow down the process in order for you to gain more time with the child before anything is official. We know that for most kids experiencing trauma shut down or PI issues, after the first 72 hours with their new family, the begin to show positive behavior changes, even if they are small changes, IA experts say that their “spark” begins to show. For the vast majority of kid and families simply nurturing the child begins to bring them out of their shut down and alleviates most, if not all, of the parents developmental concerns- but this only happens if the parents take the time to really see the child.

It means, rather than scramble to get out of the adoptive situation, slow down and take time to determine what the situation ACTUALLY is, not what it appears to be on the first day. Even if you suspect autism, don't assume it IS autism. It could be, but it more likely is not. The best thing you can do if you are faced with what might seem to be autism and the adoption clock is ticking away is get the clock stopped. There may still be kids who don't come home with families due to concerns about autism, but it seems to me that for so many families if the clock could stop and they could just have more time, many of the concerns would begin to resolve themselves. And for those kids who still didn't come home, then at least we have a little more confidence that there could be a deeper issue and not parents panicking about a kid who just wouldn't make eye contact.

And for those who wonder how I am qualified to talk about this. I am a special education preschool teacher, I am a parent to a child with autism, I am the veteran of two international adoptions, (one of a child who was completely traumatized and shut down, the other of a child who had multiple red flags for autism, neither of whom actually have autism), but more over I have the privilege of working with a leading autism expert both personally and professionally and she continually educates me on what the newest research is showing, the newest diagnostic criteria and the what is happening at the forefront in understanding and treating autism.