A view of autism from along the spectrum

A few months ago, I wrote series of posts on the topic of disclosure of our children’s diagnoses of ASDs to themselves, their schools, and others. I advocated for full disclosure to our children, at the level they can understand.

I find myself struggling with following through on that.

My wife and I have been open with both our boys and we talk freely about ASDs. It’s been pretty simple up until now. While my youngest had his diagnosis change from autism and PDD-NOS at a young age, the older of the two always had a diagnosis of Aspergers. Until now. A recent evaluation led to a change in diagnosis to PDD-NOS.

Personally, I don’t get hung up on the differences between the various ASD diagnoses. There’s a lot of characteristics to consider and I believe as long as you can ‘get in the ballpark’, you’re on your way to helping and understanding.

However, 10 year old boys are not always so flexible. He’s talked to his class at school about Aspergers and has even been involved in media coverage of Aspergers. He also has a very clear understanding that he and his brother have different diagnoses. He can’t necessarily tell you what the difference is, but his sense of identity definitely includes the label of Aspergers and he knows that his brother’s includes PDD-NOS. I wonder how hard it will be for him to lose a name that he has associated with himself for so long. It is a loss. I’ve said in a previous rant, Aspergers is just a better term to identify with than PDD-NOS is. Not the diagnosis, just the term.

I have thoughts of not telling him for a while. The label really doesn’t mean much to anybody else and he’s going through some difficult times. We’re currently very focused on establishing some stability for him. Why do anything to impact the stability we’re trying to build?

I know myself well enough to predict how it will play out. I’ll choose disclosure, as I always have, and I will do all that I can to use it as an opportunity for learning and growth. We’ll talk about the different characteristics of Autism, how the labels overlap, and how they are somewhat artificial. And then I’ll tell him that if he want’s to still wants to use the term Aspergers in describing himself that it will be perfectly OK.

I know many parents of children on the spectrum that struggle over when they should tell their child that they have an ASD. I’ve never considered anything other than full disclosure at the earliest appropriate time. My motivation for this is simple: There’s a lot to gain from full disclosure and anything else has potential for harm.

I never want my boys to hear their parents talking about autism or asperger’s behind their back. I don’t want them to think that there is something so wrong with them that we can’t talk about it. They are both aware that they have difficulties; they experience them first hand every day. If we fail to talk about it, they’ll likely think that “something is wrong with me” rather than “I am different, and that’s OK.”

I want them to feel that autism / asperger’s / pdd is part of who they are and that we can talk about it as easily as we talk about any other aspect of our lives. I want it to be a topic that has no more emotional baggage than talking about school or the weather.

I want knowledge of autism to be part of the basis upon which they learn to know themselves as they grow to adults. I want them to recognize their strenghts and be willing to learn and be coached in the areas that they need it.

Of course, it’s necessary to tailor the disclosure to their ability to understand. It varies with each child and it varies with their age. I’ll continue to add information as they are capable of processing it. The objective is not to have a one time conversation that results in their knowing that they are autistic. Instead, the goal is to foster a continual dialogue over a long period of time. Like all aspects of raising children, it’s not a sprint, it’s a marathon.

Language provides us the means to communicate ideas, build and share a common vision, and grow and expand our knowledge and understanding. It can also limit our ability to do all these things.

Some of the language we use in discussing Autism Spectrum Disorders drives me nuts. The topic is too important for us to settle for such lousy words and terminology. The language that really bugs me is listed here. I generally try to be positive on-line, but this is a rant, so don’t expect me to offer up any suggestions.

Autism – The difficulty with this word is figuring out whether someone is using it to describe the spectrum of disorders or the particular disorder that has been called autism for many years. While it’s a great term to describe the spectrum to someone who doesn’t know it, it also dilutes the meaning of the specific diagnosis of autism. We need two terms here, not one.

Pervasive Developmental Disorder – This term may have very specific clinical meaning, but it’s a terrible phrase for a layperson. The words carry the connotation of “this is complex, you won’t understand.” Its likely to cause eyes to glaze over.

Asperger’s Syndrome – This one works for me even though most people can’t get the pronunciation or spelling down. It’s at least identifiable as a general ‘place’ on the spectrum. By naming it after a key researcher, it at least follows a convention that’s recognized in many fields.

Atypical Autism – I hardly no where to start with this one. I have yet to hear of any case of autism that seems ‘typical’. Since we often refer to non-autistics as ‘typical’, this term could also be represented as Atypical non-typicalness. Since we’ve made the spectrum broader (by changing diagnostic criteria) over the past 20 years, this term really doesn’t have much use any more.

High Functioning Autism – I have a love/hate relationship with this term. On one hand, its simple, easy to understand, and an attempt to represent something much more important than diagnostic criteria. From that standpoint, it’s one of the few ‘common-sense’ terms that we have. On the other hand, it also leads us to ranking autistics relative to one another in a very subjective way. That’s not helpful when dealing with the multi-faceted presentations of autism. It can lead to overlooking abilities that are not obvious or easily measured.

Pervasive Developmental Disorder – Not Otherwise Specified – There’s no love/hate issue with this one! Here’s a term that is incredibly specific, but only at describing what it’s not. It’s like asking What color is the sky? And getting an answer of: It is a deep color that is not brown, red, or purple. I’ve met quite a few parents that have had professionals arrive at this diagnosis for their child and they’ve felt that it’s not a ‘real’ diagnosis. A different name would make this diagnosis much more acceptable. It would also keep us from using even less meaningful terms like PDD-NOS.

Autistic vs. ‘has autism’ – The difference between these words means a lot to some people. While the difference doesn’t particularly resonate with me, I respect and understand how these phrases can subtely shape our perception of autism. I try to choose which words to use based on the listener or reader. Or, more likely, I’m clueless and don’t pay attention to which word I’m using and likely offend people that favor either term.

Neurodiversity – What a wonderful word! Maybe it’s because diversity has been such hot topic in the work place, but I just knew what this word meant the first time I saw it. This term even speaks to ideas that go beyond the autism spectrum. All of our interactions with others are driven by how our own brains are wired and how we react to how other peoples brains are wired.

Biomedical – OK, you’ll need to figure out on your own whether I included this term to be fair or just to stir things up! It’s really a pretty good word. Sure it encompasses controversial things like chelation, but it also includes pharmacology, genetics, and other physiological aspects of autism and treatment. This word is very worthy of inclusion in our dialogue on autism.