As an adoptive or prospective adoptive parent we are inevitably faced with “the list.” The accept or will not accept list of special needs. Often we have needs that we are comfortable with, but more often there are needs that make us pause, or needs that we have never heard of. When you actually see a child’s file, you look at the pictures, dissect the videos, and read between the lines on the reports. Then you begin with the “what if”s.
What to include on the accept and decline list is enough for a whole post on its own. I wanted to talk about something not on our accept list (I actually don’t think it is on Bulgaria’s checklist at all) but is a real possibility. Autism. There ARE ways to be 99% sure a child does not have autism. Wait 3-6 years for a healthy child over the age of 5, scrutinize their every move on trip 1, and consult with additional physicians. That should get you close to the 99% mark. But those children aren’t the ones that are waiting for homes. The kids waiting for families are typically kids with many kinds of delays. These kids often spend all of their baby and toddler years in an institution where they learn to stim their time away. Here enters “institutional autism.”
Institutional Autism is not the same as organic autism. I actually don’t even like the term, because it implies the child is only autistic because of the orphanage. This makes you think that once home the autism will disappear over time (in which case they are not actually autistic at all) or that the child has true autism now because of the institution (you will never know if they would have had it anyways.) The take away from this is just that children in institutions have many stims and repetitive behaviours, speech delays, and social issues that look very much like autism.
I hope none of this will be controversial or offensive to parents of children with autism. My goal is to simply explain my thought process and hope that it helps other families who are scared of some parenting challenges that they would not have chosen in a perfect world. Please tell me if any of the speech in here is not worded in a sensitive way.
I have always been scared to parent a child with autism. I am just being honest. It is such a cloudy diagnosis for me, and the unknown is scary. When I’m scared of something I feel powerless, and I have found the best way to empower myself is with knowledge! I think the best way of figuring out if an institutionalized child has autism, is instead to become okay with parenting a child on the spectrum. Please don’t stop reading!! Help me, help you!
In my adoption and medical groups (and there are many because I’m a nerd for this stuff) I hear terms like “fully blown autism,” “mild autism,” “severely autistic,” ALL the time. I recently found a graphic and comic (not a ha ha comic) that was a huge help for me. It depicts ASD more accurately as a circle of different skills. Traits towards the centre are more difficult and traits on the outside are a strength. Wow! Just like that things are A LOT clearer! It’s almost like people with autism are just complex creatures like everyone else! Someone else explains ASD as an ice cream sundae of characteristics. I would like to draw my own wheel and include the terms from the ice cream sundae, because I think they are a little clearer than the ones on the rainbow graphic, but it’s nice to have it all in one picture.
It turns out that our parenting experiences already crosses some borders with ASD. For example Siobhan cannot handle a lot of sensory input. In particular, a lot of noise. Crowds, birthday parties, or even family gatherings with some challenging acoustics, can send her into a tailspin. For people whose kids do not have this issue, this looks like a temper tantrum or over reaction 100% of the time. She doesn’t need a spanking, she needs a quiet place to sit or lie down. A walk outside, a blankie bed in a corner of someone’s house, or going home is all it takes. I can handle that, because I already do! She has food issues and other texture/sensory issues that I understand.
We are no stranger to speech and motor delays! I know other parents roll their eyes at our speech delay experience. S went from non-verbal to basically on track in about a year. That’s insane! I know it’s insane and we are insanely proud! We still know the anguish of that early communication barrier. We know helpful signs, we know where to get help, we know our expectations need to be in check.
After reading I really feel like people who are considering a child where they see the potential for autism (most delayed kids in institutions) should instead split the spectrum into the different categories and be honest about what is a “no” for them. For us, if every item from the spectrum was on the list they would almost all be “yes.” We would still say no to a child with violent behaviours. We have to keep our kids safe. We struggle in the area of what we would accept cognitively (spotting cognitive delays on a non-verbal child with motor delays….uh good luck solving that puzzle!) because our goal for our kids is always independence. I know this is not an issue for many people, for us it’s one of our bigger sticking points, it wouldn’t be our first choice for our kids to live with us forever. By using this strategy I think we can say “yes” to autism and still have the space to say no if a particular child isn’t a good fit for us.
In the end it will be a big leap of faith, like every yes is. I hope the leap becomes one you are comfortable making. I know so well the feeling that the jump is too big, the crevace too wide, the fall too hard. Yet if we wait for safety, these kids wait longer for a chance to truly live.
Again, these are just the ramblings of a crazy adoptive mom. I do not know the full gravity and challenges of parenting a kiddo on the spectrum. You parents rock!