+ Asperkids: An Insider's Guide to Loving, Understanding and Teaching Children With Asperger Syndrome, Gardening for Children with Asperger Spectrum Disorders and Special Educational Needs, and Ten Things Every Child with Autism Wishes You Knew: Updated and Expanded Edition, all finalists for Favorite New Special-Needs Parenting Book.
+ Finding Kansas and My Dreams, Challenges and Joys, finalists for Favorite New Special-Needs Memoir.
+ The Asperkid's (Secret) Book of Social Rules, a finalist for Favorite New Special-Needs Children's Book.
+ @Mom2Rebels, a finalist for Favorite Special-Needs Twitter Feed.
+ AutisMate and The Social Express, finalists for Favorite Special-Needs App.
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!
What can an adult with autism do with his life?
Some adults with autism are fortunate enough to find the supports to pursue their passion.
Lee is an adult with autism who followed his fascination with remote controlled cars - and found friendship, respect, opportunities and more!
An Adult with Autism Pursues Passion for RC Racing
The Autism Research Institute was out there first, and that's why they own that coveted URL: http://www.autism.com!
Given that the organization has been around for a very long time, it makes sense that there would be changes to their approach to autism treatment.
Dr. Steven Edelson, who took over leadership of ARI when the renowned Dr. Rimland passed away, provided answer to many questions about the "new" Autism Research Institute. Most importantly, he provides parents with updated information about major changes to the DAN! (Defeat Autism Now!) approach to autism treatment.
Back in 2006, I wrote a blog post asking for insights into marriage and autism. The blog's title was "Is Your Spouse Autistic?"
Every week now, it seems, I get another comment or two on that very old blog post. It's obviously a topic that hits a nerve. And while a number of books have come out on the topic of marriage and Asperger syndrome, I get the feeling that most people need a place to vent more than a book of advice.
With that in mind, I thought I'd renew my invitation to discuss the topic of autism and marriage. Are you married and autistic? Or married to an autistic spouse? Share your thoughts, ideas, suggestions or frustrations! You might also be interested in these related articles:
- Marriage to a Spouse with Asperger Syndrome
- How Can I Handle Marriage to an Autistic Spouse?
- Autism, Aspergers and Romance
- How Can We Help Our Autistic Child Cope With Our Divorce?
- Marriage and the Child with Autism
In response to my recent blog post asking whether parents feel guilty because of their child's autism, one parent said:
Because there is no definitive cause of Autism (not one that has been discovered yet), there is no reason to feel guilt. How can one feel guilty when one doesn't know in the first place? I don't feel guilty about Autism. I don't know what caused my childrens' Autism. I have a feeling that it is genetic, but it's just a feeling. My guilts lie in the direction we take ie. therapies, schools, disciplines, etc. Is it the right decision? Was that the right thing to do? Was this medication a good idea? You know, stuff that I can actually control. My children have Autism and that's a fact. Why they do, or how they do is beyond my control. They just do. And for that, I don't feel guilty.
When our son was a toddler, a kindergartner, and even an elementary school student, I was constantly rocked by waves of guilt over whether I was doing ENOUGH, TOO MUCH, or the WRONG THING to help him.
Yes, he was in a good program at school, and getting OT, PT, speech, and Floortime. Many children with autism, in addition to the OT, PT and speech, are receiving at least some level of ABA as well.
But there are so many other avenues to explore!
Over the years, I dipped (with Tom) into auditory processing therapy, vision therapy, dietary therapies, dance therapy, RDI, Floortime, music therapy, social skills therapy... But being a bit of a skeptic, it occurred to me early on that there was NO WAY to know which of these would help the most, or even to be sure which were making a difference when his skills improved. After all, he wasn't going to quit OT, PT, speech or school in order to try out vision therapy exclusively!
What was worse, since all these therapies are essentially "alternative" in the sense that a typical pediatrician knows little about them, there's no one to help guide a parent through the maze. Yes, there are coaches out there, but none know more than the well-versed autism parent about whether X Y or Z therapy is going to be the best option for their individual child with autism.
The truth is, if you take a child - ANY child - to a sensory integration specialist, they will find ways in which sensory integration therapy can be helpful. The same goes for a social skills therapist, or a music therapist or a nutritional expert, or any other therapist. These folks aren't charlatans: they KNOW their approach can be helpful. They believe their method can be helpful to your child. They're probably right. And you certainly can't hurt your child by feeding him organic food, taking him to music therapy, adding in social skills therapy, trying out auditory processing therapy, checking out vision therapy, or looking into TEACCH, SCERTS, RDI, Floortime, etc.
But in a world with limited funds, time and opportunity, which is the right set of choices for any given child at any given moment?
Our approach, in the long run, has been to radically reduce the number and type of therapies we offer our son. We work closely with him in our home and in the community, and we work closely with his teachers and therapists, to be sure he is learning, growing, developing and enjoying life. We seek out opportunities for him to shine, and we work hard to help him be all he can. We will never, ever know, though, whether some as-yet-untried avenue could have been "the one" that would have made the greatest difference.
Whose fault is autism?
It was a very long time ago that the "refrigerator mother" theory of autism was tossed out the window. Now, no reasonable person would suggest that mom's bad attitude is a direct cause of autism.
So why do so many parents have feelings of guilt about autism? There are two likely reasons.
First, some parents may feel that their genetic legacy is the problem. They've seen autistic symptoms in their own family, and now note their child is an awful lot like Uncle Bill or Aunt Sally... Of course, this is perfectly possible - but of course no parent can control the genes they pass along. One could decide not to have children at all, given genetic flaws in one's heritage, but that would certainly limit the number of children in the world. After all, none of us comes from a long line of genetically perfect people!
The second reason so many seem to feel guilty about their child's autism relates to the belief that something mom or dad did directly caused autism in an otherwise healthy child. This concern is much more serious, because it suggests that mom, dad, or both could have prevented the autism if only they'd taken or avoided a specific action. And the media around autism certainly supports this idea. Could the autism have been prevented if only mom had avoided the tuna or the flu shot during pregnancy? Could dad have "just said no" to autism by taking a job in a town that was less polluted? Was it all about the vaccines that mom and dad "allowed" their pediatrician to inject? Blogs, videos, TV interviews and radio all offer up stories of parents beating themselves up over just this sort of possibility.
What makes all this even tougher is the fact that very few families really know why their child is autistic. Unless your child has a specific (rare) genetic disorder or there has been a known exposure to unusual substances (valproic acid in utero, and a few others), you will likely never know.
Do you feel guilty about your child's autism?
Share your thoughts!
Back to school is always a tricky time for families with special needs students. How is it going for you and your child?
Tell us about your successful - and not so successful transitions.
How well is your school meeting your child's needs?
How well is your child rising to the many challenges posed by a return to school?
What hints or tips can you share for making the school year smoother?