An evening with a mother of a child suspected to be autistic

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 😉 ❤

Spectrum Sunday

***

(Image Credit: Laura Iversion)

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14 Comments

  1. Parents can be very strange when you advise them. I think there’s a sweet spot (and you hit it) when they suspect, but don’t know much. Once they “know everything,” especially if they’ve talked to a certain eugenics organization, sometimes talking to a real, live Neurodivergent person throws them. I had one parent so grateful I got it (turns out, she’s Neurodivergent, too, which is why she’s not too worried about what her son does) and another one seemed stunned when I talked about his brain working differently as a good thing. The other mom had clearly been schooled by the “broken” mindset. Over time, I hope, she’ll become more receptive. The hardest part of these conversations I find is that we respond with logic. So what if your kid never goes to school? Isn’t it more important that he or she have a good mind-set about him or herself? But for many neurotypicals, being normal is the be-all and end-all, so even after you’ve had this wonderful conversation, they still do some horrible thing (ABA, whatever). It’s hard. Glad you had a positive experience, and I hope she keeps trusting you!

    Liked by 2 people

    1. Thank you so much for sharing your insight! I really appreciate your valuable info 😊 Thank you so kindly, too, for your encouragement! You seem to know just what my mind is obsessing about 😉❤️

      Because I admit, I have no children and it hasn’t even been a year yet since I realized my neurotype, so let’s just say that I was at a total loss lol. Still in the process of reframing my own life and catching up on the lexicon and disability/different ability (whichever term you prefer 😊) culture and whatnot, I felt a little out of my league and in over my head, but I wanted so much to help in any way I could, and usually, I’m finding, the one important element missing from the conversation is the autistic person’s point of view. There also seems to be a lot of concern among parents of autistic children about what’s to become of their child as they develop through the stages into adulthood. Well, at least I could offer one example of that 😊

      Thank you so much again – what you had to say was very reassuring to me, and like you, I hope nothing but the very best for the nice lady and her child ❤️

      Liked by 1 person

  2. It sounds like you did for her the best thing that you could-you shared your experience and offered assistance. That is honestly the most helpful thing we can do for each other on the spectrum-and especially for parents at the beginning of this journey. Having been in a very similar position as this young mom, I can tell you the ones that truly encouraged me in the beginning were the ones that shared from their hearts and emphasized the thought of “different, not less”. Helped more than any clinical diatribe or well-intended “advice”. Really, though I was not diagnosed in those early days, I understood a lot of what my kids were feeling already-I always did. I just needed to know we weren’t alone, as the rest of the world can leave you self-conscious, riddled with doubt and shame. I hope things go well for her and her precious children.

    Liked by 3 people

    1. What an awesome comment – thank you so much for that 😊❤️ What you said, too, is also really reassuring and encouraging. I really hope that she does feel more comfortable and less alone. I hope that *she* feels more reassured. Maybe I should send a follow-up email to my friend to relay to her with a link to your blog, Spectrum Sunday blogs, and others like Rhi’s blog (autnot.wordpress.com) and whoever else I can think of – what do you think about that? 💞

      Liked by 1 person

      1. Oh, that’d be an honor! That’s the very reason I blog-so I can encourage others along the road. And you’re welcome. Glad I could bring you some reassurance. 🙂

        Liked by 1 person

  3. This made me smile. It sure does feel good to help others who maybe in the same boat as you. I once met a woman with an autistic son and she loves how I understand everything he does and wants without him saying a word.(he’s almost non-verbal) His face lights up every time he sees me.

    Liked by 2 people

    1. Awww that’s so cool!! I do wish I lived closer to them, just for that reason. Maybe I can do that for someone in my own town someday! I’m so happy for you! ❤️❤️

      Like

  4. Hi there! I could have sworn I’ve been to this
    web site before but after looking at a few of the
    articles I realized it’s new to me. Anyhow, I’m definitely happy
    I stumbled upon it and I’ll be book-marking it and checking back frequently!

    Liked by 1 person

    1. Wow, thank you so much! Hehe there’s a lot to wade through on a variety of autism-related subjects lol 😊 Do you have a blog as well? If so please feel free to link to it here – I’d love to follow it ❤️

      Like

  5. What a fantastic read. I think all anyone can do is offer what they know in an impartial way and hope the person they are talking to gets what they need from it. Well done you I say.

    Plus I love that word.. copesthetic.

    Thank you so much as always for linking to #spectrumsunday

    Liked by 1 person

    1. Thank you, dear one! I really appreciate your inviting me to participate. I love reading stories and experiences from the “other” (parenting) side. Since I have no experience in that area, but was a child once, I really admire parents like yourselves, who are brimming with love and admiration for–and endless patience with–your amazing children! 😊❤️

      Like

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