Two resolutions

I don’t generally believe in New Year’s resolutions, but this year I have two.

1: Be more patient with M

C’s non-autistic twin, M, is what you’d call a Big Personality Kid—he can take over a room with his presence. And yet, through all the tumult of our lives, all the health and developmental issues, I’ve expected this little boy to toe the line, to make life easy—to avoid adding to the chaos. That’s unfair to any kid, let alone one who’s gone through as much as he has.

2: Take care of my health

I haven’t had a physical in four years. I haven’t had a real feet-up vacation in about a decade. That’s nonsense. It’s not good for me, and it’s not good for my family. First, I’m going to make an appointment with my GP. Second, I’m making a three-year plan: there will be a Real Vacation by 2019 come hell or high water. Or both.

So, what are your resolutions?

Progress happens

Two years ago, my son's previous school held a holiday concert. C had to be supported on stage by a teacher's assistant because he was so overwhelmed. The concert was loud and chaotic, all the more surprising since his school served children who often have major sensory issues. But his reticence to be part of the event went deeper than that: he was struggling.

Fast forward: C's current school had a holiday concert this week, and he was beaming with pride and joy, so confident and happy to be part of the show. In fact, when it was his turn to sing, he put on this deep voice and belted out his lyrics, silly as he was earnest. He even had to be pulled away from the mic, he was so excited. He danced and sang with glee.

So what happened in the intervening two years?

The concert was better planned than the one at the old school, it's true—not so overwhelming from a sensory perspective. But his ability to participate was due to much more than that. For one thing, the staff and teachers at his new school deserve a ton of credit for helping him to become so confident.

But on top of that is this: progress happens. Naturally, of its own accord, with support and love.

It's easy to forget that our kids, just like all kids, make progress. Sure, regression happens, but progress happens, too. It might look different for autistic kids vs. their non-autistic peers, but it's still progress.

Progress happens.

Feeling understood

C recently asked to go to the museum "to see the pretty pictures." Mind blown. So off we went.

In the first gallery, it became apparent he was less interested in the paintings themselves than when they were painted. He'd regard each painting for just a moment, then scrutinize the information tag posted nearby, before moving on.

"That one is 442 years old. This one is 377."

An older woman nearby seemed interested in his observations. With warmth she said, "He loves the dates, doesn't he!"

"It appears so," I said.

She smiled broadly and said, "Well that's lovely." Then she ventured, "His math is a little off, but it's wonderful to see someone so young interested in history."

"Oh, his math is right," I said. "You see, he insists it's 2167, not 2015. So this painting from 1790 is, in fact, 377 years old in his world."

Her smile faded momentarily, and then it returned with a slightly knowing tinge to it. "Ooooh, I seeeeee."

"Yup."

"Well, he's a very special little boy."

"Yes, he is. Thank you."

I used to feel compelled to tell people about C's autism. Now I rarely do, unless I think there's a valid reason for them to know.

But sometimes people just get it, and that's the best.

The right kind of help

An anecdote I read in NeuroTribes this morning resonated with me: a family recounts how their DAN! doctor had little interest in meeting their son, but rather on recommending (and selling) more and more biomedical therapies. This mirrored our own experiences early on with DAN! and similar practitioners: the focus was always on the labs, tests, treatments and "remedies," never on who C is as a boy. The doctor who spent the absolute least amount of time with C — barely a minute — was the DAN! doctor who recommended a heavy protocol for C, and who also admonished us for even saying he had autism. ("Don't use that word. It won't apply to him in a year or two," she said.) Even our first pediatrician who told us C was "probably just shy" at 18 months spent a lot more time each visit getting to know him. And his fee was $110 for a visit, not $500 like the DAN! doctor (not covered by insurance). To be clear, the same thing can happen with any doctor/practitioner eager to prescribe medication and move on to the next patient.

From that point forward, we decided any specialist we saw would deal more with our son and who he is as an individual rather than pushing expensive tests and various "treatments" and "cures." Some suggested that was giving up on C. We don't see it that way. We felt it was getting to know him.

Advice to parents after an autism diagnosis

Parents occasionally write to tell me their child was just diagnosed with autism, and in searching the Web for insights they found my blog. They often express fear and sometimes sorrow, and ask if I have any advice.

Since this has happened more than a few times, I thought I'd compile some of the thoughts I've shared with these parents over the past few years into one list, in no particular order:

• An autism diagnosis is just a label; nothing about your child has changed. The upside of the diagnosis, on the other hand, is that it allows your child to get critical services and support.
• It might feel unfair that your child was diagnosed with autism at such a young age, but remember that early intervention is critical — and the earlier, the better.
• Try not to panic, or feel like you have to fix things right away. This is a lifelong journey, and progress will happen over time just as it does for any child.
• Though some people feel ashamed of their child's autism, this is one of the most damaging things you can do to yourself and your child. There is no reason to be ashamed: your child has a different neurology, nothing more, nothing less.
• Although it's not uncommon to want to find someone to blame, don't do it. No one is to blame. In particular, don't blame your partner. You need to support one another now more than ever.
• Autism is diagnosed by a cluster of similar symptoms, but no two people with autism are alike. Evidence-based treatments involve working on specific challenges, not eradicating autism. Try to move beyond the label and focus on your child's unique challenges and, more importantly, strengths.
• Beware of anyone offering a cure or recovery; there is no scientific basis for any of these so-called remedies, and some of them are downright dangerous. They are offered by people who — as kind, supportive and legitimate as they may seem — are either grossly misinformed or simply want your money.
• Don't buy into the myth that people with autism are "locked away" or otherwise disconnected. Outward appearances can be deceptive; if you truly want to get to know your child, you'll find they're just as present as any other child. Seek out their interests and make them part of your play routine.
• Embrace — don't extinguish — the obsessions. They provide a great way to connect with what interests your child.
• Presume competence. Your child will amaze you with their abilities if you don't assume they're incompetent. In fact, nudge them (with love and patience) — just as you would any child — to do challenging things, things that may push their limits. This is how all people grow regardless of their neurology.
• Embrace the atypical. We like to say that we value diversity and individuality, but when it comes right down to it, there's an overwhelming parental urge to make sure your child "fits in." Over time, you'll come to understand that fitting in is a lot less important than being happy.
• Some friends and family will evaporate. There's no single reason why this happens, but some of the people you think you can rely on most simply won't be there. Try not to waste your time and energy fretting over it. New, wonderful people will enter your lives, and some of the old ones may eventually get with the program as well.
• Try to get to know teens and adults who have autism. Read their blogs and books, watch their videos, connect with them in person. They will help you gain insights you cannot possibly imagine now.
• Parenting will not be what you imagined; it will be harder than you'd hoped. Try to let go of your expectations and live in the present. In time you may come to find great purpose in this experience. I personally cannot imagine my life, or my son, without autism.

Most of all, remember that your love and acceptance for your child is what matters most.

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