Institutional Autism: is it the same as regular Autism?

Imagine a baby born prematurely and abandoned in a state hospital with no contact from a bio mother or any other family member. When the infant is healthy enough, he is placed in an institution, with albeit loving care givers, not enough staff to hold him. Instead he is left in a crib for hours on end. He becomes stiff, silent and unresponsive.

One day, fifteen months into his journey on planet earth (outside the womb, inside is a whole other story), a family of strangers who up. Baby is handed off to a woman. Baby hugs the woman, smiles, plays with toys and engages in play with the whole family before he is removed and taken back upstairs to his crib.

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About twelve weeks later, the baby is picked up, taken from the orphanage by the family (after five weeks worth of visits) and running the governmental gauntlet, flies “home’ with them.

This baby is my youngest son. Knowing what I now know about development, I can re-examine his beginnings through a fresh lens.

Disclaimer: I am not a doctor or psychologist although I have consulted moth multiple times in my child rearing journey.

I am just telling my story and maybe you can relate. The saying goes, “Hindsight is twenty-twenty”. I half agree with this statement. The other half of me says, you get better hindsight is you turn around and take a magnifying glass to it. Even then it, it is blurry at best.

Life begins in the womb. If yours didn’t, I’d love to meet you and we can chat. Even if you were a test tube baby, your first attachment was in a womb.

A baby can hear at four weeks (Mitch Gaynor, Sounds of Healing).Call it a fetus if you want, but that fetus has ears that can hear the sounds of Mama.

As early as the second trimester, the infant (fetus) can already think about what is going on both inside and outside the womb (Thomas Verny, Secret Life of the Unborn Child).

Neglect. Stress. Rejection can begin in the womb. And the separation is real after birth. The baby has heard the birth mother’s heartbeat, he knows her smell. He has heard conversations, felt the stress of the mother, he has been affected in body and soul if she drank excessive amounts of alcohol or used drugs. All of the above effect the child’s brain development. A grief reaction is created when the child is taken from the womb and from the mother.

My son had no say in the matter. He reaped the consequences of someone else’s choices. And while he was in an orphanage, he had a whole new set of variables that froze in him his tracks developmentally. I don’t have time in this post to cover every developmental issue. I’m going to focus on Autism, institutional and regular- Are they the same? Does the origin matter? What is the origin?

“Institutional autism is understood as a learned behavior produced by an institutional environment such as an orphanage. Some autistic-like behaviors may be adaptive in an institution, but become mal-adaptive after the child’s adoption into a family. A differential diagnosis between autism as a medical condition and learned autistic-like post-institutional behaviors is to be made. A conclusion is drawn that institutional autism is merely a description of certain patterns of post-institutionalized behavior that may appear similar to what is observed in children with autism. Abrupt native language attrition, typical for the majority of international adoptees, could contribute to autistic-like behavior.”-

Boris Gindis,  Institutional Autism in Children Adopted Internationally Myth or Reality

A few years back I was at an international adoption picnic and some moms were sharing advice and encouragement.. The common theme? Autistic behaviors. I did a lot of listening and little talking, so my kids were not the only one who came home with some of these behaviors, my youngest son with many, many autistic behaviors. I had previously chalked them up to attachment issues and FAS (Fetal Alcohol Syndrome). Turns out, all three of them have overlapping behaviors.

According to Federici, Over time they practiced these behaviors as a defense mechanism to block out pain and misery and had ultimately become self-absorbed and withdrawn in a way similar to children with autistic conditions (Federici, 1998, p.74).

Survival mechanisms. These are learned behaviors. Autism can be organic, that is the child is born with it. Or it can develop from trauma. Nature and nurture. The behaviors are the same. Neglect stops brain development. The behaviors that result from neglect mirror regular autism. The truth is, not enough research has been done on these children to discover what the outcome Institutional Autism has over an extended period of time. Some of my children’s autistic behaviors abated after a secure connection and they felt safe. Some didn’t. I think there is a great deal to be said for support in this arena. If your child is suffering from Institutional Autism, do some research on therapy, Talk to someone who has been there. The treatment for both is the same. These kids need to feel secure. They need schedule.Social stories help. They need permanency. Some of them need to wear the same kinds of clothing. EVERY day. And many of their stemming behaviors will continue for a long time whether they feel loved, cherished or not. They may rock back and forth, hitting their head repeatedly against something, whistle and stomp, walk in circles, meltdown when schedule changes, have a fit in the grocery store, wear shorts in the winter and sweat pants in the summer, not drink enough water, etc…

As far as treatment is concerned, I think we parents need to decide what the goal is. Is our goal to attach to the child? Is it felt safety? Is it eye contact? Potty training? Dressing themselves? Learning how to self-regulate? Recognizing their own need to get away to a safe, quiet place and doing so?

Each goal must be met with specific, achievable steps for success. That’s the wonderful thing about therapy (whether you do it yourself or take a class, or have someone come into the home), there are measurable objectives. There will be regression, but there will always be some moving forward if you have measurable objectives and obtainable goals. More on those later.

For now remember, if you think your child is on the Spectrum because of Institutional Autism:

Do some research.

Find some support.

Start some therapy.

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