Autism can be devastating. But it can also be an amazing gift. Find out how autism can enrich your family's life.
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Should you be concerned about mercury-based preservatives in vaccines? How about measles virus in the MMR? If you're confused by the debates, you're not alone! Here's non-technical information to help you better understand the controversies.
First, an op-ed by psychiatrist Paul Steinberg, "Asperger's History of Over-Diagnosis," delves into the history of the issue:
"[C]hildren and adults with significant interpersonal deficits are being lumped together with children and adults with language acquisition problems. Currently, with the loosening of the diagnosis of Asperger, children and adults who are shy and timid, who have quirky interests like train schedules and baseball statistics, and who have trouble relating to their peers -- but who have no language-acquisition problems -- are placed on the autism spectrum."
Next, "I Had Asperger Syndrome. Briefly," by writer Benjamin Nugent, details his experience being misdiagnosed with the condition.
"The biggest single problem with the diagnostic criteria applied to me is this: You can be highly perceptive with regard to social interaction, as a child or adolescent, and still be a spectacular social failure. This is particularly true if you're bad at sports or nervous or weird-looking."
--About.com Health staff
Few conditions seem to generate as much controversy as autism. The latest potential hornet's nest centers on the upcoming fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM), which is due out in 2013. The DSM, which is put out by the American Psychiatric Association (APA), is the mental health profession's bible, setting the standard for research, treatment and insurance decisions.
It's likely that the new DSM will have a very different definition of autism. Instead of three autism subtypes - Asperger syndrome, autism spectrum disorder and pervasive developmental disorder - not otherwise specified (PDD-NOS) - there will be just one, autism spectrum disorder. Some experts believe the changes are needed because current definitions of autism are too hazy, leading perhaps to an over diagnosis of the condition.
The new definition is meant to streamline and clarify what it means to have autism. But many experts are quoted in news articles about being worried that it could radically limit the number of people who are diagnosed with autism, and thus deny them access to needed health, educational and social services. One of those concerned experts, Dr. Fred R. Volkmar, director of the Child Study Center at Yale School of Medicine, expressed his concerns about the proposed changes at a recent Icelandic Medical Association meeting.
The panel downplays the numbers of people who will be affected, but no one really knows.
Well, it's been about five and a half years.
When I started on this site, my son was just a little guy.
At that time, I wanted to know all about autism spectrum disorders. And over the years, I have learned! The wealth of information I collected - all I ever wanted to know, and more! - will still be here, on these web pages, for a while to come. That's because any site guide starting out today to cover topics in autism would have to start almost from scratch in just a year and a half, when the new diagnostic manual is published. At that time, much of what I've written about - Asperger syndrome, PDD-NOS, speech issues related to autism and more - will simply be... obsolete.
Sadly, while I've certainly learned a great deal about autism over the past few years, I've also learned that there is no consensus - and likely never will be - on what autism "really" is, what causes it, what treats it, or why any individual person has the symptoms of what we presently call autism spectrum disorder. This void of information has been energetically filled by the voices of parents and others who have made a life out of anger and/or the willingness of desperate people to believe that something - anything - could make things "normal" after the birth of a child with autism.
I've also learned that it's easy to become a target for saying those fighting words: "I don't know what causes autism, but I suspect there are many causes and many autisms." I've been accused (in a negative way) of "being Switzerland," something that I certainly don't regret. This site has been a "bully pulpit" for people on all side of the many issues surrounding autism, and despite my "Switzerland-like" approach to moderation, it has become, on occasion, a battleground.
This site is medically reviewed, but I am not a doctor. I'm a mom and writer. I like to think of myself, too, as a critical thinker. As a final blog on this site (and you will be able to find me again, if you're interested, on my Authentic Inclusion site!), I'd like to just give readers some of the insights with which I leave this particular gig.
1. The goal of autism therapies and treatments, in my opinion, should be to help the individual with autism to become as fully human as they can be. Being "fully human" means so much more than being typical. It means learning, loving, creating, imagining, laughing, playing, singing, being silly, having fun. The idea of valuing a human being on the basis of whether he is "indistinguishable from his typical peers" is just plain terrifying.
2. There are many therapies out there, but none is a "cure for autism." Not even ABA. I recommend picking the therapies that work for you, your child, your family and your pocket book. We specifically stayed away from ABA because, quite frankly, when it's done poorly (and it often is) it is dehumanizing and disrespectful. Worse, it is focused entirely upon behavior, and not upon the human being that is your child. If you MUST go with ABA, choose your therapist very carefully. No matter what, PLEASE look more closely at Floortime and RDI. These therapies are all about helping your child to become the person he or she truly is, and on helping your child discover his emotional self, her creative self, his personality, her passions!
3. Life is for living. Even (and perhaps especially) when your child is autistic. PLEASE get out there, have fun, enjoy life, enjoy your kids, don't spend your life, love and treasure exclusively on therapies. Go fishing. Go swimming. Take a hike. Volunteer. Sing. Play. LIVE! And while you're out there, look for ways to help your child with autism to join in the fun. Use your imagination, and help your child with autism to use hers. Introduce your child to his world, and to the people in his world. Help them to get to know and care about your child. It's the community that, in the long run, will make or break your efforts to help your child succeed.
4. There are plenty of self-serving nuts out there trying their best to sell you Very Expensive Snake Oil. But that says nothing whatever about the impact one way or another of vaccines on children, or about the efficacy of diet, nutritional supplements, sensory integration or other alternative therapies on autism. We DON'T KNOW what caused your child's autism, we don't know what will cure it, and we probably will never know. It is almost certainly the case that people on both sides of "the biomed debate" are right - and wrong.
5. Gold-plated, double-blind, controlled, expensive studies may tell you far less than you think they should.
6. This so-called "autism community" includes some very scary people. Beware of these people, and try not to allow them to influence the decisions you make on behalf of your children. When sites like Age of Autism LITERALLY photoshop images of horns and tails onto people with whom they disagree, you can make a shrewd guess that they have an agenda that they are trying to push.
7. Many people on the autism spectrum are amazing human beings. Many are not. In fact, people with autism are as varied as the rest of the human race. "Neurodiversity" - the idea that it's ok to be who you are - is a wonderful idea. If you are a decent human being. If, in fact, you're not, then no amount of social skills training is going to turn you into Mother Theresa.
So... some of you may be wondering where I'm headed from here. I should say, first, that autism is not my only focus as a writer! I'm an educational writer with more than a dozen books to my credit (including just one about autism). That said, though, I will tell you that I will be contributing to a new site called Autism After 16. I'll be consulting on "authentic inclusion" with museums and other community organizations. I'll be blogging on my own site, Authentic Inclusion. And I'll be continuing to help my son, Tom (and my daughter, Sara) to become all they can be!
Note: as this is the last blog post I'm writing for this site, I have closed the post to comments. To those of you who enjoyed reading my blogs, thanks so much for the kind words!
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