high or low functioning: does it really matter? (Autism)

Is your child high or low functioning? If you have a child with Autism Spectrum Disorder, it’s probable you’ve been asked this question. How did you answer? Do you have a planned response if someone asks you this?

The Autism Spectrum is large, it encompasses a vast array of abilities, and now that Aspergers is included on the spectrum, it makes the range even greater. So this makes it difficult to answer the question of whether our children are high or low functioning.

I don’t know about any of you, but when we got our sons diagnosis we weren’t given a place on the spectrum. We didn’t get a pretty little star placed on a graph that explained our son. No, in my experience, our son is anything BUT explainable. Thankfully we are able to (sometimes) recognize that this is what makes our son unique. There is a way to figure out patterns, wants, needs, and communication styles of our children, but it isn’t without intense awareness and investigation into his daily, or more appropriately, hourly routines.

original by Ayla87 via sxc.hu
original by Ayla87 via sxc.hu

There are children on the spectrum who have arms and hands that curl into their bodies, there are children who don’t talk and children who do, children with comorbities such as Angelman’s Syndrome or Fragile X Sydrome, children whose sensory needs overwhelm them, children who understand more than others.

Jeremiah is nonverbal and gets extremely frustrated when he can’t communicate his desires. His sensory needs can overwhelm him and make him act hyper and out of control, or he can manage them well. He has no fear of cars in the street or of anything else really. Does this mean he’s low functioning? But there are children on the spectrum who don’t function as well as he does.

Jeremiah has good fine motor skills and can follow routines and directions if they’ve been in place daily for more than a year. Does this mean he’s high functioning?

Maybe people ask if a child on the spectrum is high or low functioning because it’s the only conversation piece they can think of when it comes to Autism. When I’ve told people (friends included) that my son has Autism, they look at me and kind of nod, like I just told them Safeway grocery sells bread. So, maybe the question of high verses low is better than nothing.

Maybe people ask where a child is on the spectrum because they are trying to make connections to what they know. That would be Rain Man versus Einstein right?

I wonder what outcome the questioner is looking for. If my child is low functioning, does the person feel bad? (Some Autism parents don’t want sympathy, but really, what else is someone supposed to feel for us? Apathy, joy?) On the other hand, what if I told them my son is high functioning? (He’s not, but let’s say he is for now.) Do they then feel like it’s no big deal? Like those who have a high functioning child on the spectrum have it easy, that it’s similar to having a neurotypical child?

A child on the spectrum is a child on the spectrum, and no matter where they fall on the graph, it presents many challenges for them and their parents. My heart goes out to parents of children who struggle more than my son. There are times when I can view Jeremiah’s disABILITY differently because he’s not in a wheel chair, he smiles at me, and makes eye contact. But the off days can weigh heavily on me, just as it can on any parent who has a child anywhere on the spectrum. So, in my opinion I’m not sure this question of high or low matters so much. I think excitement in the progress and sympathy in the struggle is warranted.

Have you been asked if your child is low or high functioning? How did you feel about the question? What do you feel are questions people can ask or comments people can make that would support you and your child?


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the fascination with adoption

I see them at the grocery store or restaurant, and I’m fairly certain they’ve adopted because they are Caucasian and they have Asian children or African children. I want to invite them to our adoption group, but I’m afraid to say anything for fear of offending. Do I ask if they adopted? Of course they did, it’s obvious. But what if the children aren’t theirs? Embarrassing.

It’s all this talk about what people shouldn’t say to adoptive parents that gets me nervous.

A few months ago I read an article that listed all the things people shouldn’t say to adoptive parents. The writer also said, “We don’t adopt because we want to provide an opportunity for someone to have a better life. We adopt because we want to make a family, just like other people.” My husband and I come from a completely different place. We adopted because we wanted to help children. We had a home and we wanted to welcome and love them. We chose to grow our family through adoption. For us, adoption was our first choice. Maybe it’s because of this that I feel differently about others asking me questions.

I welcome them.

I WANT people to ask me questions about adoption and foster care. Just ask some friends we talked to a couple weeks ago. They were interested in adoption and I talked, and talked, and talked. You would think I use up all my words on this blog, but I don’t. I LOVE adoption, and I’m full of information for post-adoption support. I relate to what my daughter said when she was two. She was asked to be quiet, and she said, “But I have lots of words.” Yep, sweetie, me too.

“Are you her real mom?” “Are they siblings?” “How in the world do you handle her hair?” (speaking of an African child). As adoptive parents, we get some really offensive comments. For the most part, I’ve been fairly fortunate in that I haven’t been blasted with idiocy from others. I have received the question, “Are they siblings?” and I just looked at them in complete seriousness and said, “They are now.”

In the adoption community there is so much indignation against people asking questions, especially ignorant or prying ones, that some parents want all questions to end. They want their life to stay private.

But when society as a whole is told over and over what not to say, I think they wonder what they CAN say.

They’re probably in fear of even opening their mouths. That bothers me because I’m an advocate for adoption. I want others to do the same thing we did. Adopt. How will they find out what adoption is about it if they can’t ask us adoptive or foster parents questions or say anything because they risk offending us?

When someone is being really offensive, there is no problem with letting them know that it isn’t okay to talk to an adoptive parent in such a way, but I think we need to have more grace.

For the person that asked me if my children were siblings, they needed information, and I don’t think they knew how to ask. I don’t mind people being inquisitive, because I am the Queen of asking questions. This person just didn’t know how to phrase it correctly. We can educate others on how to ask questions in a way that doesn’t offend, but frankly we will never reach the billions of people in the world, nor will we teach those without manners how to be polite.

The majority of people we encounter think it’s neat what we have done, or they know someone else who’s adopted or fostered and they want to share a story. Those occasional people who are rude and blunt can be responded to with a curt answer (or even avoiding the question, if it alludes to you not being able to conceive a child), but not everyone who asks us questions is prying, some people are curious and helping them understand is okay.

Please hear that I do not think it’s appropriate for people to be inappropriate or uncivil. In those cases I agree that a firm approach is often necessary and sometimes just walking away is best. I’m aware that there are people who can’t phrase a question without being offensive (I see it every day). I’m also familiar with people who have a negative perception of adoption, namely Joyce from Mother Jones. But as I stated earlier, there are many people who ask questions because they are curious.

Before we adopted from foster care, we were in the process (beginning stages) of adopting from China, and someone asked why we didn’t adopt from the US, they added that there were so many kids here that needed homes. The question didn’t feel nice, but I calmed down and shared my reasons for adopting Internationally, and left it at that. She was curious, and had strong feelings that if people adopt, they should do so within their country. She was entitled to her opinion, and I shared mine.

Someone once asked me if I had gone to the doctor (regarding my child bearing capabilities). I was shocked, and the inquisitive person could tell. They added that their friends ask them about it. Okay. Well, you can tell your friends that we chose to build our family through adoption. I was offended, but this was one instance. I know that most people assume that we cannot have biological children, and that’s something I have to live with. Everyone assumes at one time or another and there’s not much I can do, but tell those who will listen. Until then, I will welcome most questions. If you have a private life and don’t want to answer, I respect that decision too.

Have you been asked fatuous questions about your adopted kids? How do you handle these questions?

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not many people ask the hard questions

Before we decided to foster-to-adopt we were in the process of adopting internationally. During one of my visits to the vet of all places, the assistant heard about our international endeavors. She asked me why we weren’t adopting here in the good ole USA.

Her question didn’t catch me off guard because I had read about adoptive parents, who were going international, being asked this numerous times. Some would call those asking this naive, and some would just say they are inquisitive. I balance somewhere in the middle.

I answered her right away with the response I had planned in case this situation ever arose. “There are many children in other countries who need homes, and that’s what we feel we are supposed to do.” I didn’t add that foster care scared me to death, and that there seem to be thousands of couples waiting in line for newborn infants here in America. A more important reason for me was, my heart had gone out to the unwanted little girls in China.

Fast forward to the present; we have adopted through foster care once, and are about to do so again. When I was driving our babysitter home the other day, she asked, “So, are you going to do foster care again?”

I responded, “We would like to wait until the kids are older, but, yes we will adopt again. Though I’m not sure if we will do foster care again, I would like to adopt internationally.”

She dove in with another one, “Why do you want to adopt internationally?”

I fumbled and grasped for an easy answer. “I feel pulled towards the kids in orphanages. I would really like to adopt from a place like Russia or Kazakhstan. Some want to adopt from those countries because they think the children will look like them, but some are scared by the possibility of the child having FAS. In Ethiopia the kids age out when they are twelve, kicked out on the street with nothing. I just feel pulled toward an out-of-country adoption. Who knows what will happen.”

In the end, I am glad that she asked me. She may have been asking just to ask, or she may have wanted to know why we would go out of country when we had done foster care twice. Whatever the reason, it made me think of what my answer would be if someone else decided to pop one on me. There is a HUGE need for good foster homes in the US, but there is also an ever growing need in other countries as well.