Authors: John Elder Robison
Tags: #Self-Help
Be Different: Adventures of a Free-Range Aspergian With Practical Advice for Aspergians, Misfits, Families & Teachers (22 page)
I didn’t learn about my own Asperger’s until I was forty, but the changes and growth I’ve experienced as a result of that insight are beyond words. And the same thing could happen to you or to someone you know.
I don’t think there is any downside to being tested, but there are those who disagree violently with me. They say an Asperger or autism diagnosis can be devastating. There’s some truth to that. It can be a blow, finding out you have a neurological difference that won’t go away. But is living in ignorance better? I believe that no matter what the test results show, you will know more about your mind and the way it works. Testing is a tool to improve your life and make yourself more successful. And you don’t have to be scared—the testing doesn’t hurt much. There are no side effects.
When I talk about what testing and diagnosis have meant to me, I recall how they helped me understand exactly how my mind differs from other minds around me. For example, the simple insight that I miss nonverbal cues was life-changing. I seized upon the specific behavioral issues and set about constructing a better life. It worked.
Some people miss out on the benefits because they become sidetracked by preconceived notions about “having a diagnosis.” Instead of looking at their own specific issues, they look at broad statistics associated with their condition. They see phrases like “thirty-two percent can’t live independently”
or “sixty-six percent never get married and have a family.” Those numbers make them forget that they have power over who they become as individuals. They interpret those general statistics as a prediction for their own future, when it’s nothing of the sort.
More specifically, they see their future as inexorably tied to every unfavorable broad statistic associated with their diagnosis. In that sense, some see an autism diagnosis as a sentence to some kind of living death. They get swallowed up by the negative features of their diagnosis, forgetting that they’ve lived their lives before and that life goes on after. In short, they allow themselves to become victims of a label.
That is the danger of diagnosis
. Some people read what’s associated with a label and make it self-fulfilling. They let go and become the worst of what they read. That negative outcome can be reinforced by teachers and adults who say or think, “He has a diagnosis of autism. We can’t expect too much of him.” That is most assuredly not the way I have lived my life.
It does not matter what sixty-six percent of people do in any particular situation. All that matters is what you do.
Other critics focus on the danger of a wrong diagnosis. Many parents have experienced this with their kids. They get referred for testing, and the first psychologist says the child has ADD. But then another round of tests with the next shrink points to PDD-NOS. More tests and more doctors take us back to ADHD, then Asperger’s. They
bounce from one diagnosis to another, never really knowing what to do or where they stand. In some cases, kids are given medications, and a medicine that’s good for one thing can be bad for another.
That situation happens most often with very young children, most of whom don’t have much input into their diagnosis beyond answering the questions on the test. Teenagers and adults are another matter. We can take a diagnosis, read up on it, and ask ourselves if it makes sense. If it doesn’t, we can go back to the doctors and the test results and figure out why.
I agree that seriously wrong results can be worse than no results at all. But the same can be said of any kind of medical testing, and ultimately, all we can do is make our very best effort.
Most people go into testing in search of an answer, and most psychologists do their best to get the right result. You might say the shrink’s job is similar to a car mechanic’s. If you go in with a transmission problem and the mechanic overhauls your engine, you aren’t going to be much better off than when you arrived and you’ll be a whole lot poorer. Luckily, the skill level of psychologists is more consistent than that of auto mechanics.
How do you find a competent psychologist? Most people don’t have the technical knowledge to evaluate a psychologist’s skill. We must figure out another way to decide. For me, two words sum that way up: trust and confidence.
Whenever I need the services of a specialist in any field,
I ask him to explain whatever he proposes to do. I listen carefully to what he says, and I form an opinion about his abilities.
Is he able to show me what he wants to do? Is he ready and able to answer my questions? Is he really at ease explaining things to me, which tells me he really knows his stuff?
These questions apply to psychologists.
In my experience, competent people know how to explain themselves. That’s an essential component of competence for most professionals. That’s how I make my decisions about whom to trust, and I sharpen that with experience and the recommendations of others I also trust and respect.
Keep your local mental health workers employed, and improve your life at the same time. Take the test.
Body language
and other nonverbal communication are described in “(Not) Reading People,” “Emotional Triggers” (on
this page
), and “Making and Keeping Friends” (on
this page
,
this page
, and
this page
).
Brain plasticity
is discussed in “Underwear with Teeth” and “Plastic Brains.”
Bullies and what to do about them
is discussed in “Lobster Claws: Dealing with Bullies” and “Animal Wariness.”
Difficulties in understanding social situations
and other people’s thoughts and feelings are discussed in “The Center of the Universe,” “(Not) Reading People,” “Making and Keeping Friends” (on
this page
), and “Feeling Bad News” (
this page
).
Difficulty with the communication and control of emotions
is discussed in “Finding Your Path to ‘Fitting In’ ” (on
this page
), “For the Love of Routine” (on
this page
) “Feeling Bad News” (on
this page
), and “Learning Calculus” (on
this page
).
Discomfort in crowds
is discussed in “Animal Wariness.”
Failure to develop peer relationships
is described in “Asperger’s and Me” (on
this page
), “Finding Your Path to ‘Fitting In’ ” (on
this page
), “For the Love of Routine” (on
this page
), “Making and Keeping Friends” (on
this page
and
this page
), and “The Center of the Universe” (on
this page
).
Inappropriate expressions and responses
are discussed in “Lobster Claws: Dealing with Bullies” and “Making and Keeping Friends” (on
this page
).
Frequent tendency to say things without considering the emotional impact on the listener
is discussed in “Emotional Triggers” (on
this page
and
this page
), “The Art of Conversation” (on
this page
), and “Getting Chosen” (on
this page
).
Impairment of comprehension
, including misinterpretations of literal/implied meanings, is disscussed in “Mind Your Manners” (on
this page
) and “Emotional Triggers” (on
this page
).
Inability to recognize when the listener is interested or bored
is discussed in “Mind Your Manners” (on
this page
).
Internalizing other people’s problems
—which is different from self-centeredness—is described in “Feeling Bad News.”
Irrational fears
are discussed and explained as perhaps not so irrational after all in “What Are You Afraid Of?”
Lack of social or emotional reciprocity
is described in “(Not) Reading People.”
Lack of varied, spontaneous make-believe play
is discussed in “For the Love of Routine” (on
this page
).
Making friends
is discussed in “Getting Chosen” and “Making and Keeping Friends.”
Marked impairment in the ability to initiate or sustain a conversation
with others and to see the point of superficial social contact, niceties, or passing time with others, unless there is a clear discussion point/debate or activity, is discussed in “Mind Your Manners” (on
this page
), “Getting Chosen” (on
this page
), and “Seeing Music” (on
this page
).
Peculiar names
Aspergians give to people and things are discussed in “What’s in a Name?”
Perseveration
is described in “A Reason to Care” (on
this page
).
Restricted and repetitive patterns of behavior and interests
are discussed in “Rituals, Manners, and Quirks,” “For the Love of Routine,” and “Learning Calculus” (on
this page
).
Seeing the world through different eyes
is described in several chapters, including “A Day at the Races,” “Seeing Music,” and “Lobster Claws.”
Self-centeredness
and what it means are described in “The Center of the Universe.”
Sensory integration problems
are discussed in the chapters “Underwear with Teeth” and “Managing Sensory Overload” (on
this page
).
Socially inappropriate behavior
is described in “Mind Your Manners,” “For Love of Routine” (on
this page
), “A Reason to Care” (on
this page
), and “(Not) Reading People” (on
this page
).
Special interests and fixations
are discussed in “Attention to Detail,” “Learning Calculus,” “I’m with the Band,” “Finding Your Path to ‘Fitting In’ ” (on
this page
and
this page
), “What Are You Afraid Of?” (on
this page
), and “Seeing Music” (on
this page
and
this page
).
Unusual language abilities
that include advanced vocabulary and syntax but delayed conversational skills are discussed in “The Art of Conversation.”
Unusual profile of learning abilities
is discussed in “Learning Calculus” and “Plastic Brains” (on
this page
).
Unusual sensitivity
is described in the chapters “Underwear with Teeth” and “Managing Sensory Overload” (on
this page
).
Autism Centers and Professionals
There are many good autism centers around this country. All the places I’ve listed below are associated with leading medical colleges and offer services ranging from behavioral therapies to testing and interventions. I apologize in advance for not including more facilities; this list is limited to the small number of places of which I have personal knowledge through my work on autism grant review boards.
UC Davis MIND Institute
2825 50th Street
Sacramento, CA 95817
(916) 703-0280
www.ucdmc.ucdavis.edu/mindinstitute/contactus/
Asperger’s Syndrome and Autism Disorders Clinic
Beth Israel Deaconess Medical Center
330 Brookline Avenue
Boston, MA 02215
(617) 667-4074
Mass General Hospital
YouthCare Programs for Kids and Teens with Asperger’s
15 Green Street
Charlestown, MA 02129
(617) 726-0062
www2.massgeneral.org/youthcare/
University of Michigan Autism and Communication Disorders Center
1111 East Catherine Street
Ann Arbor, MI 48109-2054
(734) 936-8600
Kennedy Krieger Institute
707 North Broadway
Baltimore, MD 21205
(443) 923-9200
Thompson Center for Autism and Neurodevelopmental Disorders
University of Missouri
205 Portland Street
Columbia, MO 65211
(573) 882-6081
www.thompsoncenter.missouri.edu
Mount Sinai School of Medicine
Seaver Autism Center
1428 Madison Avenue
New York, NY 10029
(212) 241-0961
www.mssm.edu/research/centers/seaver-autism-center
The Children’s Hospital of Philadelphia
Autism Center
34th Street and Civic Center Boulevard
Philadelphia, PA 19104
(215) 590-7500
www.chop.edu/service/autism-center/home.html
UW Autism Center
Center on Human Development and Disability
Box 357920
University of Washington
Seattle, WA 98195
Toll-free Information & Resource Line 1-877-408-UWAC
(206) 221-6806
www.depts.washington.edu/uwautism/index.php
University of California at Los Angeles Center for Autism Research & Treatment
Jane & Terry Semel Institute for Neuroscience & Human Behavior
300 Medical Plaza
Los Angeles, CA 90095
(310) 794-4008
Yale Child Study Center
230 South Frontage Road
New Haven, CT 06520
(203) 785-2540
www.childstudycenter.yale.edu/index.aspx
You can find an updated and expanded version of this list on the
www.johnrobison.com
website. There is a much larger list of resources on the Autism Speaks website, at
www.autismspeaks.org/community/resources/index.php
, and on the Autism Society of America website, at
www.autism-society.org
.
There are a number of very different strategies for educating and socializing kids with autism. In my opinion, there is a place for every legitimate method because kids with autism are so different and varied. However, schools tend to adopt a single method like ABA (Applied Behavior Analysis) or RDI (Relationship Developmental Intervention), so a place that gets wonderful results for one child
may not succeed at all for another. For that reason, you should be prepared to try several schools with different approaches to see what works for you.