About Sol

Today Sol was formally diagnosed with autism, a step that comes as no surprise to anybody who has been close to him. At four years old he’s still not really talking, except in scattered words and lines quoted from his favorite videos. He’s clearly bright—he’s taught himself to read, in fact, at least at an early/beginning stage—but he’s just utterly unaware of, and uninterested in, social conventions and boundaries. And I’m talking boundaries like “don’t dig out all the soil from the potted plants and strew it all across the living room,” or “if you happen to find the front door unlocked, don’t run out in the middle of the street in your diaper and jump around there.” He is Not Like Other Kids.

He’s also sweet, loving, and happy—delighted with himself most of the time, and delighted to be in the world. He’s singleminded in focus when something interests him. He’s physically active and well-coordinated—loves jumping, climbing, and throwing things. He’s cuddly and affectionate. He really obviously thinks it’s pretty great being Sol.

My focus, on parenting Sol, is on supporting him to do the things he wants to do rather than trying to change or “cure” him. I think autism, or brains that work differently in general—neurodivergence or neurodiversity—is a benefit to humanity. I really value the perspective that my friends who are on the spectrum share. So I consider myself a supporter of the autism acceptance movement, and I have resisted the steady drumbeat of alarm from friends and family who repeat the words “early intervention” as if it’s some kind of mantra. Firstly, autism is a difference, not a disease; it can’t be cured and it shouldn’t be stigmatized. Secondly, I don’t want to intervene in Sol’s development, I want to support it.

I’ve done a lot of reading of blogs by adult autistic people about the “interventions” they endured in childhood, and there are some real horror stories out there. Many adults actually have PTSD from the abuse they suffered in the name of therapy. As the Autistic Self-Advocacy Network puts it:

“Many therapies and products for Autistic children and adults are helpful and should be made more widely available, such as physical therapy, speech therapy, occupational therapy, and augmentative and assistive communication technology (including supported typing, facilitated communication and other methodologies that support communications access). However, ASAN opposes the use of behavioral programs that focus on normalization rather than teaching useful skills. One of the guiding principles underlying the United Nations Convention on the Rights of Persons with Disabilities is respect for the right of children with disabilities to preserve their identities. Autistic children should not have to grow up constantly being told that their natural behaviors are wrong and that they cannot be accepted as they are.”

It took us almost a year of navigating a ridiculous bureaucracy to even get Sol diagnosed in the first place, and now that we have? We get to wait another month before we’re formally added to the rolls of the Regional Center of the East Bay, the private non-profit that’s under contract from the California Department of Developmental Services to provide service and support for people with developmental disabilities. I think Sol could benefit from speech therapy so that’s my goal right now, but I would really like everyone to understand that getting services for him isn’t an easy or a straightforward process (and certainly not a quick one).

And most of all I need those close to us to understand that there’s not, like, a magic wand any specialist can wave over Sol’s head to transform him into a “normal” kid. He is always going to have a brain that works differently, and those of us who love him are privileged to benefit from his unique perspective on the world.

11 Responses to “About Sol”

  • Dawn Says:

    Hey, I didn’t know that Sol was coming up for an autism diagnosis, but then I’ve never met him.

    We found with Ryan’s diagnosis (I think he was six or seven) that we were mainly relieved. It gave us access to the support he required and answered the question of why he was different.

    His life is an interesting one – it’s different to the one I might have expected, back before he was born – but it’s not an inferior life. He’s had some great experiences (trips to Europe with the school and work experience with go-carts) and has taught us a great deal from his perspective. He has generally been happier than Bea whose more “normal” childhood has been plagued by the usual issues of teenage drama, body image and unwanted puberty.

    Best of luck sorting your way through the support services (I could offer advice if it were England, but not for the US) and I’ll be interested to hear how it all goes.

    • Shannon Phillips Says:

      Thank you, Dawn! Obviously as a parent what I most want for Sol is to be *happy*, so hearing about Ryan’s experiences is tremendously reassuring.

  • Amy S. Says:

    Shannon, I’m really happy (but not surprised!) to hear that you all are on Sol’s side in this. Ruthless mainstreaming can backfire with regard to self-acceptance and many kinds of social development. There are so many more educational programs tailored to actually helping kids learn in a way that isn’t violent toward them. Sol’s a lucky kid, and you’re an amazing mom.

  • Christina Says:

    Yes, this is beautiful! If he can be OKAY with being himself, he’ll get there. Those other skills do come, they just come with time. And this: “Secondly, I don’t want to intervene in Sol’s development, I want to support it.” This is beautiful and perfect. (Also I really need advice from you about being patient and not freaking out when they run out into the street the second you stop watching.)

    • Shannon Phillips Says:

      Well, that part is *really* scary, so I’m not sure I’ll ever stop freaking out about it! One time he managed to climb out a window while I was in the shower. A passerby in a car stopped to keep an eye on him, which I do appreciate, but instead of ringing the doorbell she called the cops! Managing the adrenalin of “oh god my kid was in the street” while at the same time getting yelled at by a stranger AND wondering if I was going to have to explain myself to CPS made for an excessively unfun day. I wish people would have a little more compassion.

      • Christina Says:

        🙁 Yes. These are the parts that are HARD, no matter how much we love or accept them. We still have to keep them safe and relatively happy in the world.

        I’m struggling not to lose my cool and panic-yell when one of mine does something similarly squirrel-y and dangerous. It is still very much a struggle for me, though.

  • Virginia Hagman Says:

    Hi Shannon, I’m Jon’s sister, I met Sol and your other sons over the summer and found him delightful. I’m glad to hear that you have a formal diagnosis and find your acceptance of who Sol is refreshing. I am learning more about autism and I look forward to reading about your family’s journey through this process.

  • Kieu Linh Valverde Says:

    I admire and agree with your outlook on autism and Sol. He’s Sol, what more is there to say? In a society that is accepting of how humans are — diverse, beautiful, … Humans should not be labeled “different” or worst simply for being human. Thank you for sharing this!

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