I’m still in Winter Wonderland, 1035 aeronautical miles from my home. Despite my previous misgivings, it has actually been a surprisingly lighthearted, benign, and enjoyable trip so far. The most traumatic event thus far involved a temporary loss of everything most valuable, with which I was soon reunited. I’m crossing my fingers that everything remains copesthetic.
One of the more interesting events thus far consisted of an opportunity to help another person in a venue that is still rare and new to me: a chance to have a conversation with a parent who suspects that their child may be on the spectrum, who wanted to gain my perspective!
She (I’ll call her “Julie”, which isn’t her real name) is a condominium neighbor of the dear friend with whom I stay when I visit Winter Wonderland; they live right down the hall from each other. They see each other in passing, and they make small talk that sometimes doesn’t stay so “small”. Sometimes the bits of passing conversation evolve to deeper and more personal goings-on.
One day, prior to my visit, the “Julie” mentioned to my friend that her son may be on the autism spectrum. This concerned the lady a great deal – not so much of an “oh no” mindset, but rather, more of a “now what? What is this?” thought-train.
When my friend relayed this to me, I made a very clear and firm offer to help, to talk with Julie if she is interested. As it turns out, she was.
We met last night, in the comfortable and ambient-lit living room of my dear friend’s condo. My dear friend made introductions and then retired to her room, both for her own rest and to let Julie and me talk just the two of us.
Julie made small talk at first. It dawned on me that she was doing this out of respect for me, rather than getting right down to business immediately. It wasn’t necessary for me, but I didn’t stop her, because I could sense her coexisting need for it – i.e., she needed to do this for herself, too. I focused and followed as best I could, but I wouldn’t be able to recall the subject matter now, a mere 15 hours later. But that’s OK. It gave her what she needed, and that’s what counted.
Julie is a sweet and frazzled mom of two young children, who is currently going through a fairly nasty divorce. My dear friend suspects that the other child may be on the spectrum, too, but none of us are psychology specialists. Julie is a genuine and attentive mom, an intelligent lady with plenty of common sense. She’s attuned to her children, but does not strike me as a helicopter mom.
After a sufficient amount of small talk, she gingerly dove in. “I understand you’re on the autism spectrum?”
She took me in, studying me without being too obvious about it.
I nodded and smiled and said, “I am.”
I assured her right away that I am open and that I’ll answer any questions she has, and tell her anything she wants to know, and help her in any way I can.
What was I going to “help” her with? I didn’t know her. I didn’t know her son; I may have seen him in passing, in the hallway, when each of us was coming and going, on our way to somewhere else, separate paths that met tangentially, and only for fleeting moments here and there.
And then there was…me. Christmas Eve marked the nine-month notch of time since I first realized that I was more than likely on the spectrum, so although I have 39 years of experience of living life on the Asperger’s/autism spectrum, I still feel like the new kid on the block. As much as I know and as much as I’ve been through, there’s still so much more to learn.
So who was I to say anything to anyone about this subject? What made me an expert? Besides my in-the-dark and spectrum-unaware life experience and my intense interest in my frequent Google searches and blog fine-tooth-combing, nothing.
But I was here.
I was accessible, within quick and easy reach.
And I was willing.
Was that enough? (Is that sufficient?)
We had a delightful conversation (at least, I perceived it that way, and I hope she did, too). The first question she asked me was about how I came to suspect that I might be on the spectrum, and how I found out. I told her my stories – how I first came to suspect that I’m an Aspie, and what how I proceeded to solidify my suspicions from there.
She also asked something about what life on the spectrum is like for me. I summed it up with a familiar analogy: operating systems. Figuring that that particular analogy fits exceptionally well and efficiently conveys the concepts of “different, not less”, I described how I view Asperger’s/autism as simply a different operating system, and that our challenges become most apparent under the stress of attempting to connect with–and make our way in–a world that is dominated by an operating system that doesn’t work the same way.
I probably gave her much more of a backstory than she was looking for. In what was probably a minor strike of internalized ableism, I self-consciously and sheepishly issued the disclaimer that I don’t often know how to distill information down into main points. Any and all of the details seem equally important, and any one detail might be The One that facilitates the most significant “a-ha!” moment. To leave out any detail would risk depriving the other person of having that moment, so I tend to tell the whole backstory.
But she graciously listened, with interest. Wanting to steer the conversation to a topic more likely relevant to her, I explained about sensory sensitivity, routines, “stim” (self-soothing or focus) activities, meltdowns, and alternative communication types. We covered those topics and yet more ground beyond them: how the spectrum isn’t necessarily one of “mildness” vs “severity”, exposed the myths of “functioning” labels (with the freshwater-fish-in-a-saltwater-environment analogy), dispelled the myth that a meltdown is a tantrum by a trendy name, and aimed for the stars of neurodiversity.
We talked about the pros and cons of early- versus late-diagnosis of autism. We talked about the pros and cons of educational “mainstreaming” versus specialized schools or homeschooling. We talked about “special interests” and fascinations, public places, and various traits. I did my best to present a balanced view of “half-disability, half-superpower”. But above all, I was quick to say that “if you’ve met one Aspie/autistic person, you’ve met one.”
I could see and feel her working hard to absorb the information and wrap her mind around it, but Julie is an intelligent lady and an excellent mother, and she’ll choose wisely for her children.
After two hours had flown by, her mobile phone rang; the other parent, who had the children for the evening, mentioned that the younger child was having a tough time being separated from their mom for the night, so she had to leave for the other parent’s house to pick up said child. I reassured her that if she had any unanswered questions or thought of any more questions later, that I would be here through the end of the week, and that even after I leave, I have a robust online presence with email, Facebook, Twitter, and Skype, as well as text and email, and I made it clear that my door is open and that she’s welcome to contact me at any time, for any reason.
I’m not sure I did much. I’m not sure if there was even anything I was supposed to “do”. I wasn’t sure what to expect, if anything. I’m sure this is one of those conversations in which, when you’re the parent and it involves your child, that will take some time to absorb and mentally sift through. I’m sure that if anything was accomplished, it was that a seed that will germinate in its due time, if it is indeed supposed to.
I’m really grateful for the opportunity and I was honored that someone sought my perspective; those of us who have felt ignored on some level throughout our lives know how it feels to finally be taken seriously. But (I state emphatically): this conversation was not about me. I never imagined that it was and I never thought that it should be. The information itself has reached its destination. My work is done. From here, it’s in the hands of those who sought it, and it’s always up to a recipient what they want to do with that information. My only hope is that it helps if indeed help is needed, either now or in the future.
I admit that it was a really neat experience, though 😉 ❤