“To Diagnose or Not to Diagnose…that is the question!” (Acknowledgement to Shakespeare—who is also considered to have been on the spectrum)
Helpful Hint: If you think you might be on the spectrum and it is in some way impacting your life or the people around you, talk to your GP for a referral to an autism specialist. Remember, it’s just information! Diagnosis or not—and what you do with a diagnosis— is a matter of personal choice. (Caveat: remember that serial misdiagnosis or incomplete diagnosis is common.)
Below is a link to a 5-minute multi-question informal (not diagnostic) survey that’s interesting and fun to do. Ken scored 9 out of 10 on the autism quotient (very autistic) while I scored 0! Whew! We can hang on to our blog title: “I am autistic, I’m not” (!)
So, let’s diablogue:
Ken: Getting a diagnosis was equal parts painful and enlightening. It simultaneously opened and closed doors. How did my diagnosis impact you?
Christina: In the same ways. But I think today, six years after your diagnosis and after almost 10 years of marriage, the diagnosis is what’s keeping us together.
Ken: Hmmmm. Perhaps. That being said, I think there are an equal number of different ways this diagnosis has affected each of us.
Christina: For sure. Knowing that you are physiologically different—that your brain is actually configured to work differently from mine—helps. I can now interpret things for what they really are, not what they seem to be. The diagnosis cleared up a lot of my misunderstandings of you.
Ken: The diagnosis has also helped me avoid misunderstanding and misinterpreting others. It has made me aware of the effects that autism has on people. This allows me to adjust my behaviour and find scripts and workarounds that make interactions better for everyone.
Christina: And knowledge about autism lets us have intellectual and practical conversations about what’s going on without getting tripped up by miscommunications—or emotions.
Christina: So all this suggests that we wouldn’t have made it this far together without the diagnosis. Is that what we’re saying?
Christina: It’s good that we went ahead with it, then, right?
Ken: Yes. However, for me, the decision to get a diagnosis was deeply personal and complicated. I calculated that the positives would outweigh the negatives.
Christina: That’s interesting. But for me, once the possibility was raised, it would have been hard for me to not get more information—a diagnosis. I’m kind of driven that way—maybe that’s my Aspie trait!
Ken: (laughs) Ultimately we decided together to move forward with getting a diagnosis. I wished to get it so that I, or shall I say we, could base our future on accurate and appropriate data. I speculated that the diagnosis would give us insights into my needs and abilities instead of us continuously struggling, leading to more misunderstanding and frustration on both our parts.
Christina: Totally. Before the diagnosis, I would endlessly hope that if I gave you enough clues you would figure out how to be sensitive to my feelings, to “tell” when I needed you close, needed my space, needed to cry and not talk …
Ken: (interrupting/interjecting) To me the signals for needing closeness or space appear to be exactly the same. Therefore, I do not know which way to proceed.
Christina: I know that now because of the diagnosis. So, I can let those desires go…to a degree, anyway. I still have the needs, but the rational part of my brain helps me adjust my expectations and my actions. “He’s autistic,” my brain tells me now. “Tell him exactly what you need. Or go talk with one of your women friends.”
Ken: And the diagnosis has given me the chance to adjust my behaviours to sometimes to catch on and give you what you need.
Christina: Absolutely. You meet way more of my needs now, and I hope I meet more of yours, like respecting your need for more sleep and time alone to recharge. So… do you think all adults who feel that they might be on the spectrum should get a diagnosis?
Ken: Yes, in part. I believe that if more people with autism got diagnosed, it would increase awareness. It would be more difficult for the non-autistic world to overlook, ignore, and sometimes even shun us. We would be more visible.
Christina: Makes sense.
Ken: That being said, we have a few friends who may be on the spectrum or have family members who may be touched by autism. Some of them seem to function adequately without the need to know. As we stated previously, the decision to pursue a formal diagnosis is a complicated and deeply personal one. Each individual—in consultation with their families and significant others— need to weigh all of the factors before making the decision to pursue a diagnosis.
Christina: I agree. Both getting a diagnosis and living as autistic without a diagnosis are heavy, but different, loads.
Next Post: Diablogue #12 – “How do you know? ~ Ken’s 12 autism spectrum diagnostic criteria: Part 1”