A drawing by a friend

Sean Gallagher is many things to our family: friend, confidante, supporter, neighbor...emergency contact! He's also one of the grownups in C's life who always takes him in: when Sean visits, he gets down on C's level and greets him with great affection and humor, and C loves him for it (as do we, of course). So I was incredibly honored when Sean asked if he could do a drawing of C. But then I was blown away when I saw the drawing itself: a sublime portrait of C singing. Gratitude aplenty. Thank you, Sean.

To see more of Sean's work, visit his website.

Sensory-seeking

Sometimes extreme sensory-seeking is a hassle. It means crashing into things, knocking things over, chewing everything in sight — even Dad's favorite chair.

But sometimes-sensory seeking means bear hugs, tightly held hands, and experiencing the pure joy of a stucco wall.

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.

Hugs, camps, books

Things have been hectic, thus fewer posts. I have been a bit more active over on Facebook; won't you join me there? In the meantime, just a couple quick notes.

We've been working with C to help him show his emotions in appropriate ways, in particular affection. It looks like it's working.

I took this photo just before a very tough morning. You see, it's summer break for the twins. This means some much-needed downtime for C, and day camps for M. As we dropped M off at his camp, C fell apart. He saw the kids doing a morning routine, playing, laughing. He was devastated that he couldn't stay with his brother, that he couldn't be part of the summer camp experience. Obviously, this isn't easy on us, either.

On the drive home, my wife and I chatted with him about how this wasn't possible just now, but hopefully soon. We try to be honest with him, but still protect his feelings. He gets it, even though he doesn't like it.

In other news, I just started reading the just-released and already critically-acclaimed NeurTribes by Steven Silberman. It's not just incredibly informative, it's a great read. I highly recommend it, but don't take my word for it:

“NeuroTribes is a sweeping and penetrating history, presented with a rare sympathy and sensitivity. It is fascinating reading; it will change how you think of autism, and it belongs, alongside the works of Temple Grandin and Clara Claiborne Park, on the bookshelf of anyone interested in autism and the workings of the human brain.”

— Oliver Sacks, author of An Anthropologist On Mars and Awakenings

In March, Silberman gave a great TED Talk on the forgotten history of autism. Check it out if you haven't already.

That's it for now. More soon...hopefully.

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.

If you like this, please consider sharing it with others. Thank you for reading.