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.

"What I've been reading" is moving

After giving it a lot of thought, I've decided to stop publishing the monthly "What I've been reading" feature here on the blog. Instead, I'll be posting articles of interest — the same stuff, including insights, opinions, science and news — on Facebook and Twitter.

I'll do my best not to clutter your feed with too many articles. However, this will allow me to pay more attention to writing for this blog, and will make the other updates more timely.

So, I hope you'll take a moment to follow me on Facebook and Twitter — or both! If you want to stay up to date with this blog, be sure to subscribe for email updates.

As always, thanks for reading...and tell a friend!

PS If you want to catch up on old posts, they're not going anywhere!

What I’ve been reading — June 2015

Opinions and Insights

Why Do Friendships Fade for So Many Autism Spectrum Parents? This one really hit home. Read more

Father’s Days. A cartoonist’s journey into first-time (and special needs) fatherhood. Beautiful. Watch it

Parents New to Autism: Don't Fall for Pseudoscience like DAN! or MAPS. The title says it all. Read more

Questions for Ari Ne'eman: Partnering with participants "We have an opportunity to re-envision the quality of our autism conversation. It’s a chance for us to build a more inclusive vision, one that acknowledges that autistic children will grow into autistic adults. If we do our jobs right, that doesn’t have to be a bad thing." Read more

We Are All Part of One Spectrum. (HT to Emily Brooks.) "...if the Autism Rights Movement’s history will be told as a successful one, it will be because all voices were heard, including mine, including the voices of the ones you don’t believe have a lot to say." Read more

Science

Large Swedish study casts doubt on autism 'epidemic' "'The authors present probably the best data available on whether [autism] symptoms have increased over time,' says David Mandell, associate professor of psychiatry and pediatrics at the University of Pennsylvania, who was not involved in the study. 'Their findings suggest that they have not.'” Read more

Body clock genes may set pace for sleep issues in autism. "People with autism are twice as likely to carry alterations in genes that regulate the circadian clock, or the body’s sleep-wake cycle, as those without the disorder. The findings, published 6 May in Brain and Development, may help to explain why most children with autism have troubled sleep." Read more

News

When 2 Teens Found a Friendship No One Believed They Could Have "I don’t care that’s its taken 17 years for Kreed to find a friend because this friendship was worth the wait." Inspiring. Read more

Daniel Smith, proprietor of an MMS company, convicted " If this weren’t being used on disabled children, I would consider hiding behind a church ( a fake church in my opinion) as being reprehensible. But that act pales in comparison to the harm caused to individuals." Read more

Young man with autism is now a world renowned artist Read more

Who Decides Where Autistic Adults Live? Sometimes the best of intentions can lead to disastrous results. Read more

The forgotten history of autism

http://www.ted.com/talks/steve_silberman_the_forgotten_history_of_autism From the TED website: "Decades ago, few pediatricians had heard of autism. In 1975, 1 in 5,000 kids was estimated to have it. Today, 1 in 68 is on the autism spectrum. What caused this steep rise? Steve Silberman points to 'a perfect storm of autism awareness' — a pair of psychologists with an accepting view, an unexpected pop culture moment and a new clinical test. But to really understand, we have to go back further to an Austrian doctor by the name of Hans Asperger, who published a pioneering paper in 1944. Because it was buried in time, autism has been shrouded in misunderstanding ever since."

A proper and accurate understanding of the history of autism will lead to greater acceptance and, one can hope, better services and support.