In honor of The Masters Championship this past weekend, I thought I’d post something from Ernie Els. I know, I know. He never won The Masters. I’m sure he’s aware of that fact as well. But still. . .
The “Big Easy” Speaks for Autism
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Category Archives: In the News
From the President
Here’s the official proclamation from the White House. Whatever else you may think of the Affordable Care Act, you’ve gotta love that it mandates insurance coverage for autism screenings and developmental assessments for children at no cost to their parents.
Even the Vatican!
Kinda churchy in its wording (and a bit stiff in the translation), but the head of the Pontifical Council for Health Care Workers had some really nice things to say to the autism community. Here is one passage that I really liked:
In this pathological movement of self-envelopment and closure to the other and the external world, the Church sees as impelling the task of placing herself at the side of these people – children and young people in particular – and their families, if not to breakdown these barriers of silence then at least to share in solidarity and prayer in their journey of suffering. Indeed, this suffering, at times, also acquires features of frustration and resignation, not least because of the still scarce therapeutic results. These frustrations are to be seen, in particular, in families which, although they look after these children with loving care, experience repercussions as regards the quality of their own lives, and are often, in their turn, led to be closed up in an isolation that marginalises and wounds.
If you untangle the words, you see that Archbishop Zimowski gets some of the most challenging aspects of living with ASD: the frustration of the ones “trapped” inside of themselves and the isolation that not only they but their families can experience as a result.
I’ve often thought that the greatest gift the Church can give to the world is the gift of solidarity–one of JPII’s favorite words. Today’s Mass readings described how Jesus showed the greatest solidarity with us by becoming one of us and walking the paths that we walk–even to death on a cross. And now we as members of his body are called to the same solidarity–to become fellow-travelers with anyone who feels abandoned, marginalized, or less than worthy.
This, too, is one of the greatest challenges–and privileges!–that I find in raising my ASD kids. It takes more to get inside of their brains than it does for neurotypical kids because ASD kids can have such a hard time communicating who they are and what’s going on inside of them. You have to learn to think like them, and that can be very hard to do. But once you’ve got the key, you can make all sorts of contact and bond with them in new ways. And the love that flows between you is something extraordinary.
The problem, of course, is that not too many people outside of the family are going to go through all the work it takes to get there. And that leads to misunderstanding, isolation, and limited opportunities. So this is why statements like this one from Rome are so encouraging. It’s so good to know that we’re not walking this path alone.
Then there’s the archbishop’s statement that people on the spectrum . . .
. . . are never alone, inasmuch as they are passionately loved by God and, in Him, by the community of those whose faith commits them to becoming a living and transparent sign of the presence of the Resurrected Christ in the world.
A “living and transparent sign” of the presence of God. Yes! This is what I want to be for my kids. And this is also what I know my kids are becoming for me. God just shines through them in a special way.
May we all have eyes to see!
1 in 88? Really? Yes, Really.
Well, the word went out far and wide yesterday. The prevalence of autism is now officially 1 in 88 in general, and 1 in 54 for boys in the US. For the past couple of years, we were hearing numbers like 1 in 110 for the general population. That sounds like a lot. And it is. But I always remember that my family has a sixty-six percent rate of prevalence. So in one sense, one in fifty-four sounds like child’s play!
Anyway, here’s my take on it.
1. Much of the rise is accounted for by underserved populations, such as blacks and hispanics, finally getting appropriate treatment. So these numbers don’t only tell us that so many more people have autism than did twelve years ago. Rather, we are beginning to see how many have had it all along.
2. Much of this also reflects a natural cycle. That is, the more awareness increases, the more likely a psychologist or psychometrician will be to consider ASD when treating someone. So more kids who were once labeled ADHD or specific learning disabled are now being recognized as actually falling under the autism umbrella because of the constellation of deficits they manifest. (In a future post, I will tell how our oldest boy, Michael, was just diagnosed with ASD two years ago, even though we suspected something was up with him for years.) A lot of adolescents and even adults are now falling into this category, leading to a spike in the number of diagnoses.
3. The jury is still out on environmental causes, such as junky diets, poor air and water quality, and an increase in other toxins in our over-processed, post-industrial age. We know that vaccines do not cause autism, but it’s likely that there are many contributing factors. We do know, for instance, that there is not just one “autism gene.” Not for nothing is it called a complex neurological disorder. So it’s also possible that more kids are being born with autism, even as more of those who have been with us for a while are being identified.
These three factors make a lot of sense to me, and they all help me accept the CDC’s numbers. But there are a couple of other things to keep in mind.
4. There’s the fact that this is a government agency, and the government is often reluctant to acknowledge epidemics, for economic reasons.
5. The DSM-5, which is due to be released next year, changes and in some ways narrows the criteria for the diagnosis. This could result in a decrease of the officially recognized cases of ASD. The joke going around is that the American Psychiatric Association is out to “cure” thousands of people of autism with the stroke of a pen! But just as the DSM-IV ‘s 2000 update broadened the diagnostic criteria quite a bit–contributing to the dramatic increase in recognized ASD cases some people stand to lose their label next year–and with that the services and insurance coverage that they have long relied on to help them navigate an unfamiliar neurotypical world.
All these factors combine to tell me that we are indeed in the midst of an autism epidemic.
That may sound extreme, but I am convinced that there’s a lot more of it out there than we’re willing or able to acknowledge. Think, for instance, of all the people in our penal system who are there because of developmental deficits or mental health issues. Never diagnosed, they are just locked away out of sight and deprived of any chance at proper treatment. But that’s for another post.
autismblues 