A recent article landed in my Google news aggregater, “Child’s Autism Diagnosis: 4 Stages You Will Go Through”. Unfortunately, for all of its cheery helpfulness, it still manages to perpetuate some common stereotypes and misconceptions about disabilities:
When you hear that your child has been diagnosed with autism, the worst thoughts come to your mind. You can feel scared, lonely and overwhelmed. All of these feelings are natural when dealing with a new situation, but it doesn’t have to be terrifying.
Seriously. The author assumes that the experience of getting a diagnosis is automatically horrifying; the first two sentence are loaded with negative words: worst, scared, lonely, overwhelmed, terrifying. Parents may feel these things at times, and for any number of things, including the sleep-deprivation of newborn care, or even dropping your child off for the first day of preschool or Kindergarten and experiencing the fallout of separation anxiety. But the process of receiving a diagnosis is described like slogging through of an abyss of despair, with the “4 Stages” listed as 1.Denial, 2.Anger, 3.Grief, 4.Acceptance.
A problem with riffing on these “stages of loss” (familiar to anyone who has taken Psych 101), is that although there is evidence that many people do experience such upon receiving various diagnoses, the very presence of articles such as this may serve to reinforce the despair as much as they seek to lighten it.
How so? Firstly, many people in various support industries related to disability (including educational and social work realms) are taught that people will go through these grieving stages, so they may understand why and how people experience such, and therefore how to support them. Unfortunately, this means that they expect people to go through these stages, so don’t realise that not everyone does, nor even needs to.
Secondly, while articles like this help parents (and others) understand such feelings, they can also magnify such feelings, or even reinforce or create such feelings. Well of course, it’s only natural you’re going to feel that way, and of course you will also experience all this other Sturm und Drang. Likewise, support groups and discussion boards are rife with such. Although they allow people to vent frustration and commiserate, they can also perpetuate and sometimes increase such despair.
In novel situations, people will pick up the social clues about how they are “supposed” to act and feel, and the clues can magnify or squelch the original actions and feelings. These social clues come from articles, news stories, books, radio and television programs, online videos, blogs, discussion boards, local support groups, even conversations with others in the local community. In other words, social expectations can create self-fulfilling prophecies, “My kid’s just been diagnosed with autism (ADHD, dyslexia, APD etc.), so now I’m heart-broken and my life will never be the same.”
Shockingly, such stages of grief are not automatic, and not everyone goes through them. Support workers should also know that if someone is not exhibiting such grief stages, that does not automatically mean they are “in denial” — they may already be in acceptance and have skipped the crisis altogether.
Guess what: getting a diagnosis may not be a “crisis” at all! Yes, it will be a major life event, a turning point. It will be the culmination of many ups and downs, and the corner turned that initiates many other ups and downs (such is life). But it doesn’t have to be a crisis.
Here are four stages you might go through instead. Keep in mind that these aren’t linear — you don’t necessarily start at 1 and go sequentially to 2 then 3 and end up at 4. Rather, you may find yourself switching between or even experiencing a couple at the same time (think of overlapping sets in a Venn diagram, rather than a number line).
Oh, thank goodness! Things finally make sense. “Of course! Why didn’t we figure this out sooner?“ Over time, with our new information we realise that a lot of other things make more sense, too. *whew*
You knew that something was different, and now you have an Official Diagnosis to show your extended family, friends, neighbors, school, or office that, “Yes, I’m not being lazy, stupid, or hypochondriac.” (And yes, I actually know what I’m talking about, more often than not.)
A shiny new diagnosis gives you the means to move forwards and get some assistance, accommodations, treatment, medication, or whatever else is appropriate in your case. You are now un-stuck from the limbo of the have-suspicions-but-undiagnosed. Whee, progress! “Outta my way, sob-sister, I got things to do and people to be … we are gonna effect some positive change here.”
“Hey, I’m not alone! There are other people out here dealing with the same issues!” They can help me figure out how to do things, how to get what I need, and I can learn from them so I don’t have to re-invent the wheel. Plus, they provide moral support when I’m down, and an ear when I need to bitch, and they will serve as reality-checks and let me know when I’m being foolish or spouting off nonsense.
PROGRESS: YOU MIGHT BE GETTING IN THE WAY
(instead of leading)