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What is it Like to Have Asperger's?

a Young Mother Asks





This emergence transcript is excerpted from a brief exchange between a young mother and myself. As you'll read, she wrote to me struggling, after her 19 month old son was diagnosed with Asperger's and after she read my recent work on autism and distraction.

Thursday, January 21, Sara wrote and asked ...

Are you the author of "the spectrum of distraction..." on the Emergence web site I happened upon?  I just found out my infant son (19 months) is "at risk for an autism spectrum disorder."

I've spent countless hours trying to understand what his diagnosis means, only to end up right back where I started ... confused!  The doctors say he is not autistic, but has autistic tendencies (hand flaps, fixates on spinning objects, anti-social towards peers).  Yet, he has a 500+ word vocabulary, has known his colors and shapes for quite some time, and prefers the company of older children and adults. 

Everyone comments, "How can something be wrong with him if he's so smart?"

When you were very young, (as young as you can remember) what was the most difficult part of your childhood?  Did you get any type of early intervention?  If not, what would have been the most helpful to you?  Have you been able to stay employed and live happily and independently as an adult?  (I've read the unemployment rate is 88% for AS's). 

Obviously, you wouldn't be who you are now without AS.  But if given a choice, would you rather not have AS, at the expense of being a different person?

And most difficult to ask, when did you consciously know you were different? Did you always feel a disconnect from people socially?  Or were you insulated from that feeling because you had peers with similar interests? 

Sorry for all the questions, I want to get to the heart of what will help my son the most-and what he may go through later on in his life.  Doctors and other 'professionals' all have different opinions.  I feel obligated to educate myself about autism / ASD so I can have a say in what is best for my baby. 

And of all the theories and studies I've read about - yours made the most sense. By the way, I am a 2134.

Sara

that evening, I wrote back and said ...

Hi Sara,

Yes, I am the author of the article you mention. And thank you so much for writing. The thought that I may possibly make a difference in your little boy's life means a lot to me.

As for your questions, please don't apologize. Just know I am far from having anything like comprehensive answers. Even so, I'll do my best to offer you the little I've come to know so far, really just some starting-point answers, some places to begin to look to help your son.

You write:

I've spent countless hours trying to understand what his diagnosis means, only to end up right back where I started ... confused!  The doctors say he is not autistic, but has autistic tendencies (hand flaps, fixates on spinning objects, anti-social towards peers).  Yet, he has a 500+ word vocabulary, has known his colors and shapes for quite some time, and prefers the company of older children and adults.

Sara, please hear this. I am not writing to you as a professional. In fact, I, in no way, would ever attempt to diagnose anyone without first seeing the person face to face.

Even then, I normally dislike giving people labels, especially babies, as at times, these labels hurt like hell and in some cases, the fancy words depersonalize what is best left personal. However, as one human being to another, even from the few symptoms you mention, it does appear your son has Asperger's Disorder.

What does this mean if this is true?

First, it means he does have an "autism." However, as you've read my work, you know I define "autism" quite differently than most. No surprise. After all, I have AS myself, and as you're finding out, people with AS need things to be very precise, especially words.

So now allow me now to remind you of how I personally define this word.

What is "autism?"

"Autism" is "a social impairment wherein a person suffers from a pervasive category of socially disconnecting distractions."

The principle symptom?

The profound inability to connect to socially normal people.

The principle behavior?

Compulsively focusing on things other than personal relationships at the expense of personal relationships.

Please notice I haven't mentioned any symptoms other than the distractions which impair the person's ability to connect to socially normal people. And in the case of your son, I would add to these words, an impaired ability to connect to "socially normal peers."

From what you write, Sara, your son does suffer from this inability. If your description is accurate, then I believe you would, in fact, be better off assuming for now that your son does have Asperger's. Why? Because, rather than describing his condition with the vague and somewhat meaningless phrase that he has "some autistic features," with an Asperger's diagnosis, you will be more likely to get him competent help. And more likely to focus on learning what this condition means.

More over, at your son's young age, you will not be hurting him if you get him help based on this diagnosis. In fact, if later, his symptoms abate, then all the better. And if not, and if he does have Asperger's, then the earlier you intervene, the better his chances to adapt and adjust to the rest of the world.

"Everyone comments, "How can something be wrong with him if he's so smart?"

Sara, believe it or not, hearing you say people say this about your son hurt my heart. Why? Because so many people said this same thing about me throughout my childhood. At times, I wondered what they were really trying to say, as this never made much sense to me. In fact, I always felt inadequate and never really believed them anyway. Why? Because I always felt so inept and stupid in social situations.

Like your son, I, too, always gravitated toward the older kids or adults and never felt like I fit in with kids my age. In truth, I didn't fit in with them. Ever. Not even with the nerdy kids. So to answer your next question,  "Obviously, you wouldn't be who you are now without AS.  But if given a choice, would you rather not have AS, at the expense of being a different person?"; My honest answer is this:

Today, with what I have accomplished because of my Asperger's, I can see the good in it and would not change it a bit. However, if it was my son who now had AS, I'd probably be reacting very much as you are; I'd be so very worried and concerned for him, about how hard his life may become.

Of course, what you are also asking me is, is there any good to having this condition? Here, my answer is a very clear and resounding, "yes." You see, I love feeling motivated to understand things from my own eyes and in my own way.

In a way then, because I have AS, I'm still the curious little boy I was at age nineteen months, in love with all that I see in the whole world. Because of this, I see beauty in life in places where other people never even notice beauty. Like in the spidering lines on the back of a turning brown oak leaf. Or in the intricate bubbling patterns in a spring stream spilling excitedly down a mountain side.

"When you were very young (as young as you can remember), what was the most difficult part of your childhood?"

The loneliness. And the isolation. Remember, however, that unlike your son, I had a mother with schizophrenia who also suffered from an acute intolerance to noise of any kind. Thus, I grew up in a home which very closely resembled an auditory deprivation tank.

Your son will never have to suffer this way.

"Did you get any type of early intervention?  If not, what would have been the most helpful to you?"

Early intervention? No, I didn't get any. Not because my parents didn't care though. Rather, remember, Asperger's didn't even begin to be a recognized diagnosis until 1994. I was born in 1946. Therefore, my parents, teachers, relatives, and siblings simply told people, I was "shy."

Sometimes, I think to myself how ironic that Hans Asperger wrote his seminal paper on this condition two years before I was born but in a time wherein the world had no immediate way of sharing such things. Today, because we do have ways such as the internet to connect, information travels faster.

Even so, because we are all still so far from understanding the true nature of Asperger's, I'm not sure how different my childhood would have been even if someone had intervened.

"If not, what would have been the most helpful to you? Have you been able to stay employed and live happily and independently as an adult?  (I've read the unemployment rate is 88% for AS's)."

God, Sara, when you ask me this, I so feel my inadequacy. Not that I feel the social inadequacy I felt as a kid. No. But I so wish I had more concrete and complete answers to offer you right now. What I can offer you is this:

I am probably one of the happiest people you will ever interact with. My life, as painful as it has been at times, is now one I would not trade with any one on the planet. And even when I was still lost, I always worked, and I always found life interesting.

People with AS are rarely without a deeply stimulating interest in one thing or another.

More over, through out my life, I have always worked, even if I did have trouble with people.

In addition, I've also overcome many of the symptoms of Asperger's.

How?

By allowing the deep craving which Asperger's creates in me to fuel my personal searches for precise and pragmatic ways to better understand this part of myself. And by not accepting the limits many professionals would have had me believe about myself.

Said in other words, I have spent the past ten years totally immersed in my work in and around human personality. And totally loving it.

I love getting out of bed in the morning. And I love my work, and my friends, and my son, and my family.

Because of my AS and the desperate aloneness in created in me, I've also authored a whole new theory of personality. Now even as I tell you this, the fact that I've done this still floors me. Not so much, because of the actual accomplishment. No. Rather, because I so hope my work and discoveries will help others who suffer from this terrible loneliness, not just people with AS, but all people with aloneness, especially those who suffer from the pain of being misunderstood.

More specific to your son's life though, I can tell you, you have many reasons to have hope for him. Things are getting better, even just from the point that we can intervene earlier. In fact, I'm just finishing up with a just-turned-nine year old boy who had been incorrectly diagnosed with ADD.

When his parents first called me, I told them I was not sure I could help at all.

His parents now tell me all the time how remarkably different their son is from the boy he was when we started. How so?

The biggest change I myself can see is in how he interacts with others. In fact, recently, his father, with watery eyes, told me he had just that day witnessed his son interacting with another boy at school. He told me he saw him interacting normally. Like his other son does.

Can you imagine how good seeing this felt to this boy's father? Remember, his son is nine and is just now beginning to get better.

Compare this to the other people I currently see with Asperger's. Age fifteen, nineteen, thirty two, thirty nine, and so on. God, how they have suffered. For years now.

In every case though, these people tell me, with great emotion, how relieved they are to be seeing changes in what they have never understood about themselves.

More important, I believe that with the help of their families and other professionals, that I may actually make a lasting difference in their lives. How? Sara, I'm still working on how to tell people what I'm doing and how to use it. I will, however, briefly mention a few of the things I have been doing. Remember though, my ability to describe what I'm doing is still in the beginning stages.

One thing I've begun to do is to teach people with AS to recognize what I see as the four main reference experiences they need to see in order to better connect socially to others. What are these four things?

  • [1] precision / perfectionism / exactness
  • [2] correction / logical intolerance
  • [3] digression / distraction / comprehensiveness
  • [4] bluntness / lack of social pace / honesty

These are the four significant deficits I've identified in people with AS. Including in me. And in the case of the nine year old boy I mentioned previously, I recently used Emergence to help him to change one of these difficulties; correction. The experience went something like this:

Picture a little skinny nine year old boy, smiley and bubbly and so eager to please and to learn. He is in my office with his younger brother, his mother, and his father.

For many weeks, now, he repeatedly had been correcting others especially his father. This evening was no different, and as he walked in, he corrected his father yet again.

Now picture that the little boy and I are sitting across from each other, about six feet apart.

The family (his mother, father, and younger brother) is sitting to the side of us both.

I tell the little boy we're going to play a game together, and that it might be a bit hard, but that I am sure it can help him.

Was I sure it would help him? No. To be honest, I wasn't sure. However, I was sure it was possible that it could help him, and that I might be able to help him have a conscious new reference for what it feels like to be corrected.

What did we do?

I told him he was to tell me something he was sure was true. Then, I was going to correct him.

I then told him we were going to do this five times, and each time, he was to just sit there and watch my eyes but not respond.

We then began. Excited to learn, he told me his fact, something like the name of his dog. I then allowed this fact to sink in and then told him this name wasn't true.

Immediately, his face scrunched up in a very uncomfortable smile. However, he followed my instructions to the letter. He sat there and did not reply, and he continued to face me silently but attentively.

We then tried going through this a second time.

Again, his faced scrunched up but he remained quiet and attentive.

By the third time we did this, he was struggling so badly, I could barely keep going. Seeing his hurt little face was killing me. I knew though, that I had follow the rules I'd given him as people with AS respond best to literal interactions. They simply feel better when they and others know and follow the rules. And I had told him the rules of this game; we were going to do this game five times. I knew then that he expected me to do this, as hard as it was on both of us.

At this point, I also saw some hope as I could see the Emergence was beginning to work. How? Because even with his AS and with his desire to follow rules, he asked me at this point if we could stop.

Sara, it took everything in me to keep going. However, I did keep going. We did it the two final times, all the while both of us struggling. Remember, I have AS too, and my correcting him was being incorrect. And my hurting him was terribly hard.

Then it happened. Immediately after the fifth time and final time, the little boy leaped out of his chair and ran over to his father. Then he hugged him tightly and said, "I'm sorry, Papa."

We could all see he was truly sorry for having corrected his father. Not because he had done something wrong. Because he had felt what being corrected was like.

We all knew this, and we all were teary.

Now lest you think all that happened was some simple behavior modification therapy, let me say this. There was a whole heck of a lot more going on my office that day than what you could glean from these few words, much of it non-verbal. Also, I made up this day's game only after my having played similar games with him for many, many months.

What kinds of games?

For one thing, a game I made up to help him with another of the AS big four; a game to help him to experience his "digressions." A game I called, "the instruction game."

Thus, on the day we played the "correction game," what he and I did was an extension of this prior game; the "instruction" game. More over, he and his brother had frequently asked me within minutes of arriving if we could play the other game.

How about what he felt that day? Has what emerged in him lasted?

Absolutely. And it has lasted with no reinforcement. In fact, even though several months have now passed, he has retained his social sense of what it feels like to be corrected, so much so that I am sure this is one of the more significant factors in his improved ability to interact with his peers.

Now what about your son? He's not even close to nine. What kinds of things can you do with him?

If it was my son, the first thing I would try to do would be to put him in as many situations as I could wherein there are few to no distractions and wherein he is watching things like the videos of other babies faces. He needs to see their facial expressions. The younger the better. Close to his age is best.

Kid's shows. Sesame Street. Anything wherein he can hear voices and see faces. And especially in situations wherein these babies interact with others.

Another thing you might try would be to work with him on what I call his ability to use "pseudo-speach." What I mean by this is, work on his ability to engage in the imitation conversations normal babies engage in, in order to learn to socially interact with others.

You may have heard this called, "baby talk." To, me, it's the life line kids with AS need the most, the social skill they most painfully lack. And if you can make a difference here, you will surely decrease his pain for life.

What else?

At this point, I'm not sure. Let me think about it for a few days.

What would also help would be if you were to write me back and tell me a bit more. What is he like with other babies in the room? And when he does use words, how are his eyes? Empty? Bright? Flat? Curious?

How about his difficulty interacting with others. How does he voice his displeasure? With anger? Frustration? Sadness? Confusion? Does he say nothing at all?

And where does he focus his feelings, out toward others, or inward at himself?

Finally, Sara, I would like to ask your permission to post what we've said on my site, anonymously, of course. Thus, although I know I'm far from being able to offer precise help, perhaps our dialogue might offer some other mother or father some hope for their child.

And don't give up. AS is a difficulty, not a brokenness. In fact, I have found helpful the idea that we people with AS simply speak a different language, and that we are literally "strangers in a strange land," as writer Robert Heinlein might have said.

In other words, I teach people with AS that they need to become bilingual in order to socially connect, and that it is not that we are wrong or bad but rather, that we are not understood. No one's fault. But our responsibility.

And thanks so much for writing. I hope I have in some way given you hope for your son.

Warmly,

Steven

P.S. Please do write again and let me know how your son is doing. And also, you must be a very intelligent woman to have assessed your social priority yourself (the "2134"). I've barely begun to post drafts about this idea on the site. Even so, you have somehow understood this idea really well. Wow!



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