Asperger's and Autism: The Value of Neuro-psychological Testing

John Elder Robison Community Member April 28, 2011
  • Just the other day, a middle aged fellow approached me and said, "I think I might have Asperger's. Do you think there is any point to my getting tested, or am I too old?"

    I looked at him as I pondered the true meaning of his question.

    "You do look pretty old," I said. "But I'll bet you could still take a test. Maybe they even have a simplified version you could try." I tried to look encouraging, but I'm not too good at stuff like that.

    "That's not what I meant," he said with an annoyed tone. "I was wondering if getting tested would serve any purpose!"

    Now that his meaning was clear I gave his new question a bit more thought. Why do people get tested for neurological differences like Asperger's or autism?


    Kids get tested when they don't do what's expected. For example, a tyke who doesn't talk when grownups think he should gets tested. A kid who never looks at people gets tested. There is this presumption in our society that all kids should talk and look at people, and woe to the toddler who fails to comply.

    Later on, kids who fail or struggle in school get tested. There's another presumption in our society that all kids should pass school. So a kid that fails must have something wrong, and the school shrinks test until they find it.

    At least, that's what some parents hope. In today's economic climate, schools may resist testing because they don't have any money to provide the services suggested by the tests. But those battles are the subject of another story; another day.

    It's probably fair to say that most of the kid testing is initiated by observant grownups. But what if it's not fair? It's still true . . . and that's how it comes to pass, 99% of the time. Kids do not start the process on their own. I have never once heard of a three-year-old saying, "Mommy, can you test me for neurological differences?" In fact, I think it would be nothing short of remarkable to hear a question like that from a kid, even in today's enlightened times.

    There are some who say, "There's no such thing as normal!" To those people, every single kid has a diagnosis waiting to be found. I don't know that I fully agree with that, but I do think knowledge is power, and the more you know about yourself, the better off you are.

    So then the kids become adults, and the idea of grownups looking out for them goes away. If a kid escapes the test/diagnosis cycle through toddlerhood and his school years, he's pretty much on his own. There is a societal presumption that all teens should pass high school, but there is no presumption that those same teens should pass work, once they are out of school.

    If they don't act right at work, they get fired. There's no talk of testing and evaluation. There's no plan for success. There's just depression, anger, and a search for a new job.

    Some adults solve their problems, and settle into adult life, career, mate acquisition, kid raising, the whole American Dream routine. Others lose their way, to one extent or another. I am a member of that latter group.


  • When everyone around me made friends, I was the loner. I was the one who never knew what to say, or how to act. People called me all sorts of names, none of which felt right. But they all had a corrosive effect on my psyche. Why couldn't I fit in?

    When you find yourself at loose ends as a grownup, on the street, and it appears that life is unraveling all around you, there is a natural tendency to ask . . . . what's the matter with me?

    For some people, that's meant to be a rhetorical question. But for others, it's very real. There truly is "something the matter." How do you know which group you are in?

    You get tested.

    As I said earlier, knowledge is power and that statement is most particularly true with respect to self-awareness. In my case, the knowledge that I was a perfectly normal Aspergian male (and not a freak) changed my life. Actually, "change" is too mild a term. Understanding of Asperger's, and what flowed from it, turned my old life right on its ear and set me on a new and brighter path that I'm still following today.

    If you are an adult, and you have a significant neurological difference (Asperger's and autism are the most common, but there are others) the insight you can get from testing may be the best thing to ever happen to you.

    Have you always felt like you were different? Do you always seem to say and do things in a different way? Do you struggle with things others master instinctively? Do you have strange fixations or interests? Have you ever wondered why?

    Maybe you are just nuts, but perhaps there's a more useful explanation, like the one I received some years back. I didn't learn about my own Asperger's until I was 40, but the changes and growth I've experienced as a result of that insight are just beyond words. And the same thing could happen to you.

    There is no downside to being tested. No matter what the test results show, you will know more about yourself, your mind, and how it works. It's 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.

    You know you're different. We're all freaks inside. Get tested today. Keep your local mental health workers employed, and improve your life at the same time.

    I wish I had my own testing organization, so you could send me money. But I don't. I'm not even a mental health worker. I'm just a believer in the value of self-knowledge.

     

    For more of John's insights check out his blog Look Me in The Eye

     

2 Comments
  • concernmom
    Nov. 30, 2012

    It's wonderful to hear from a true pioneer, John. We have our son tested at ~five years old through private practice. After that, we have to fight with school to put the label on our son in hope of getting services. He finally got the label with very minimum services and no ABA.

     

    Around ~six years old, we have him tested again by a different doctor....

    RHMLucky777

    Read More

    It's wonderful to hear from a true pioneer, John. We have our son tested at ~five years old through private practice. After that, we have to fight with school to put the label on our son in hope of getting services. He finally got the label with very minimum services and no ABA.

     

    Around ~six years old, we have him tested again by a different doctor. He went through three months of ABA at out patient services, things do get better for him with training.

     

    After that we tried to get help from the Regional Center near our home town.

    They did not agree with the label due to his high IQ.

     

    He is 6.5 now and knows that he's different than the rest of the kids at school.

    Despite my positive encouragement, he knows it's not a good label. I'm worry about his feeling as he's getting older. He asked me for a penny everytime he saw a water fountain. His wish was "I wish I'm neurotypical". I felt like a razor cut through my skin every time I heard him saying that.

     

    Back to our daily life, no ABA(can't afford it), my son and I(his mother - as a teacher, a best friend, a psychologist, a maid, a speech thearapy, a Occupational therapy) - struggle through each day in search for his normal life someday-independent? perhaps, the Whole  American Dream routine.

     

    Your personal experiences and suggestions are our inspirations to keep us going.

    Thanks for sharing and please keep us posted.

     

    concernmom.

  • Anonymous
    motherhenann
    Oct. 12, 2011

    my 10yr old had just got his diagnosis - ASD - clearly Aspergers as I had suspected, but put off the actual finding out, worrying about affect a label might have on him. Instead I think it has given him relief - a reason for why he is driven to do certain things - he has certainly started talking about things more and hopefully we will come up with solutions...

    RHMLucky777

    Read More

    my 10yr old had just got his diagnosis - ASD - clearly Aspergers as I had suspected, but put off the actual finding out, worrying about affect a label might have on him. Instead I think it has given him relief - a reason for why he is driven to do certain things - he has certainly started talking about things more and hopefully we will come up with solutions together. I would advise anyone to get a diagnosis