ADD Asperger Syndrome

[Anonymous]

I was recently diagnosed with ADD and PDD-NOS (which I am personally convinced is really Asperger Syndrome, but can’t be diagnosed as such since I’m not displaying some key symptoms obviously enough anymore, but did a few decades ago).

My question is a bit complicated. While watching ADD and Loving it, I put what I was learning about ADD together with what I have already learned of AS and quickly perceived many potential conflicts between methods of dealing with ADD and the nature of Asperger Syndrome.

For example, under “Tips and Tricks” right here on this site, Dr. Jain talks about developing habits. Habits, as we all know, take time to develop and require a great deal of effort, reminders and (here’s the big one) CHANGE. Autism though, usually encompasses a severe dislike and resistance to change. Change, for the Autistic, means changing WHO you are.

Okay, now I know from my own research on AS that changing one’s habits doesn’t necessarily mean changing your “inner being,” or the essentials of who you really are, but really only means changing how you behave. Your “outer” being, in essence, or how your “inner being” interacts with the outside world.

That is the reality of new habits, but the Autistic, for whom reality exists within his own mind, before he learns to understand that habits don’t necessarily define one’s values, principles and core being, is more likely to view forming new habits as changing “who he is.”

The Autistic at first views new habits as changing or “fixing” who they are. WHO they are is very important to the Autistic. It’s more than important. Who they are is the foundation of their entire universe. So when the Autistic is faced with the prospect of developing a new habit, it SEEMS as if they are being asked to redefine their entire universe.

Additionally, the mildly Autistic, when they reach the point of being introduced to the prospect of dealing with the problems they have by changing their own habits, has already spent a great deal of thought, time and effort (far more than non-Autistics), making sense of their universe. There seems to be a huge fear associated with the prospect of having to figure all that out all over again. There seems to be a connection in the Autistic mind made between forming new habits, and totally changing their view of who they are and how they relate to society, that violates their sense of “self.”

“Forming new habits means changing who I am.”

I theorize that the Autistic mind, due to its egocentric nature, equates “changing who I am” to changing their entire perspective of not only who they are, but also of the entire universe and the society in which they live. That is a frightening prospect given how hard it was, and how long it took for them to form their perspectives to begin with.

I am now fifty years old, and though I only recently began to suspect I had AS and confirmed it, I did learn that how I viewed changes in habits wasn’t exactly accurate. But it took me decades to understand that.

When I was much younger, I had a very high resistance to forming new habits for these very reasons. I now know it wasn’t “normal” and was due to Asperger Syndrome. I’m now seeing this same resistance in all of my sons (far stronger than any of their peers ~ including those not on the Autistic spectrum, but on the ADD spectrum).

My wife and I do discuss Autism and ADD with our sons on a fairly regular basis. They know they have the conditions, and they have some understanding of what they are, and what it means to have them. But having been through the realization of both ADD and AS myself, at a much later age, I know how difficult is was for even me to grasp not only ADD and AS independently, but also to grasp certain possible conflicts and interactions between the two. I know now that having both presents a very complex set of strengths and conflictions that seem to be unique to this particular combination of disorders. It seems clear to me that dealing with ADD and AS together is definitely more complicated than dealing with ADD alone.

My question is how to go about helping young Autistics (specifically my three sons ~ one with PDD-NOS, one with AS, and one with some strong Autistic tendencies), see that habit changes don’t really change “who” we are, or necessarily mean totally redefining our perceptions.

I’m hoping for some suggestions….

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[Anonymous]

Some additional thoughts…

I was just thinking about Dr. Jain’s videos on “doorways,” and realized something about roles in relation to Asperger’s as well.

“Roles,” or “acting” is often referred to as a practical “way of life” for those with AS, far more so than those without it.

Roles are extremely difficult for “Aspies” to adopt, given their extremely strong self-identity. “Self” (as in the “Aut” in Autism), is what Autism is all about, as I’m sure you know. I can only speak from my own experiences, and not for everyone on the Autistic spectrum. My experience, especially when much younger, was that playing roles was kind of like pretending to be somebody else, not who I really am, always in favor of other people’s expectations of me, rather than being “honestly” who I am.

At my age, and after a great deal of experience and learning, I’ve come to understand that these roles aren’t necessarily as I used to think (as in, the roles are “not me”), but are, rather, extensions of me, or different “versions” of me. That took a long time to learn and accept though. As a child, a teenager, and into my early thirties to mid thirties, that seemed impossible to accept. It seemed “untrue” to me.

I remember feeling very strongly I was always being asked, or even demanded, to be someone other than who I really was.

I have a son, twelve now, who is diagnosed with Asperger Syndrome and ADHD, and has had an IEP at school since he was nine. His IEP has included allowances for one on one help with his school work. This has entailed a few different para-educational workers to help him out over the years. I asked him recently what he thought their job was.

His answer was “They think their job is to fix me.”

When I asked him what he meant by that, his answer was, “To change the way I do things, change my personality. Change who I am.”

I think we know what they are really trying to do is help him understand that at school, he needs to play a role. The role of “student.” Obviously, from his answers to me, he doesn’t understand that playing certain roles, and behaving differently in different settings, doesn’t necessarily mean his core being has changed. To him, his behaviors ARE his core being.

Having come from the same outlook myself, and having taken so long to learn to understand the subtle difference between changing who I am and changing my behaviors, or taking on various roles, I can strongly identify with his view point, while at the same time know that view point isn’t quite accurate.

The problem is, I know no other way to learn this than from extensive experience, because that’s how I learned it. Nobody really taught me this. That said, I’ve no clue how to help him understand what I’ve learned, but I sure do hope to figure out a way to help him in this regard. I would love to be able to give all of my kids the advantage I never had, of learning and understanding these principles earlier than I did.

I was FORTY before I began to grasp these things! Needless to say, that’s a lot of years fumbling around like a blind man in a crowded club. Man I hope I can help them grasp this kind of stuff early enough to equip them when it matters most, in early adulthood, instead of middle age like me!

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[Anonymous]

Hmm. Was hoping for some feedback on this one. Maybe nobody out there identifies?

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[Rick Green – Founder of TotallyADD]

It’s really interesting what you’re noticing here. It might be something for someone who is doing research.

I think you have kind of answered your own question, which is how do you get someone to see that developing habits is not changing who they are. The idea that I am “a clean shirt every day” seems bizarre to me, but that seems to be how an AS person views things.

Perhaps the way forward is to see that creating new habits or structures, new behaviours, doing new things, has nothing to do with your beliefs, personality, fears, hopes, life experience, ethnic background, dreams, etc.. In other words, all the stuff that is YOU. That changes very slowly, if at all, over one’s life, unless one does some really powerful self-actualization courses. And a diagnosis of Cancer or a Near-Death experience can certainly shake off a lot of the limits we’ve imposed on ourselves.

We know who we are. Or we think we do. And we think we know who are parents are. But of course, we also claim our parents don’t really know us, never considering that our parents could be just like us, pretending, putting up pretenses, afraid, frustrated, knowing they could be so much more, but not sure how to get there.

You only have to look at what happens when someone is on their deathbed to see how much of who we are is just beliefs, just story, that has become ‘fact’. Everyone shows up, everything is forgiven. People sees only the good in the other person, “I was such a fool. You were just trying to protect me from having my heart broken, and I thought you were meddling or didn’t want me to be married and have a family.” Or whatever it is.

Sorry, I think I’m diverging here.

A thought: The reasons and logic and so on about why AS people view things a certain way is interesting. But it’s just information. The question, as you point out, is what is the way forward.

To use an analogy, if just giving people more information was all that was needed, more knowledge, more resources, then hell, no one would be out of shape or overweight, right? There’s a thousand diet plans. The simplest is, eat less, eat healthier and exercise more. But what percentage of the population is overweight? Knowing and understanding is interesting. But it doesn’t get you anywhere. What usually gets people eating better and exercising more is a doctor looking at your X-ray or Cardiogram and going, “Uh oh.” Then we’re suddenly aware of the costs of how we’ve been living.

Change is possible, but the danger is you can change back.

The trick is transformation. Like a caterpillar turning into a butterfly. That’s a one way process.

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[Anonymous]

Thanks Rick.

My apologies for the length of this post. It’s my “Aspieness” and a really CAN’T help it sometimes, as you will see…

First let me say thank you so much for producing ADD and Loving it. I was amazed at the similarities between the AS experience and the ADHD experience. Differences between them are probably a bit harder to discern, I’m sure, even for those who have both. AS, for me, was much harder to and took much longer wrap my mind around. I can only imagine how much more difficult it would be for those who don’t have it. I suppose the same is true for those who don’t have ADD trying to wrap their minds around it, but I personally found understanding ADD much easier once I saw the video. I suppose as well, it was probably made easier because I had already spent so many years investigating AS, given the strong similarities.

The similarities between them however, seem to be in overall life experience. Cause and effect though, seem to be very different, even when they may tend to cause the same end results in terms of things like feeling like an outcast, being told we are just lazy, not trying hard enough, not thinking positively enough, etc. What’s going on in the AS mind that can cause us to receive similar reactions from the outside world, may be very different from what goes on within the ADHD mind that results in the same sort of reactions.

Your analogy of “being a clean shirt” is close, but a bit off. You probably get this, and this may just be a semantic point. Aspies tend to think very literally. The idea “I am a clean shirt,” wouldn’t make any sense to an Aspie. Obviously, I am not a shirt. I am, however, what I think, and what I think drives what I do. Therefore, if I don’t put on a clean shirt every day, “I am a person who does not put on a clean shirt every day.” If I begin to put on a clean shirt every day, “I become a person who puts on a clean shirt, and that is not the person I was.” If we are asked to change our habits, it feels as though we are being asked to change who we are.

As I said, we are extremely literal thinkers. That said, because I have learned to grasp that aspect of AS in depth, AND the fact that people not on the spectrum have a natural ability to pick up on subtleties, innuendo and don’t tend to take things so literally, I understand that you may already realize what I just explained. We are famous for “splitting hairs” and often exasperate people with our literal interpretations of speech. In this case though, I think it’s important for ME to know that you really do understand the distinction, otherwise we could end up unknowingly talking about two different things, each thinking the other is thinking the same thing.

The distinction in this case really is important to be very clear about. If you did think we might equate our “selves” with a clean shirt, and it seems bizarre to you, it should, because the idea would seem even more bizarre to us! It’s the HABIT of putting on a clean shirt, that if new to us, might feel like changing who we are, not the clean shirt itself.

A very common response from an Aspie to whom a suggestion is made to change a habit might be preceded with “I don’t…”

For example, I have one son who is deeply Aspie. When we first started trying to get him to comb his hair in the morning before leaving the house, his response was, “I don’t comb my hair.” Of course, we already knew that, and the entire point of getting him to do it was BECAUSE he never did. To him though, BECAUSE he never had, that “non-habit” was part of who he was. Asking him to start doing something he was already in the habit of not doing, was asking him to change who he was.

I think Aspies tend to think that if they must change “who they are,” their must be something wrong with who they are. He had left the house many times before that without combing his hair, and nothing bad had happened, so…

“Why should I?”

Explanations of how it looks to others doesn’t help much, because how it looks to others is their problem, not his. We really have to get him to think the entire process of social interaction, social thinking, and how what others think comes back around to affect US directly. He, because of his Autism, doesn’t automatically follow that logical path. Until one can get an Aspie to understand how their habits can affect them directly, especially when it’s an action that will only affect them indirectly because of how others react, the Aspie doesn’t see any value in the action. If people comment numerous times throughout the day that he should comb his hair, he’s far more likely wonder what their problem is with his hair (it’s not theirs, it’s mine!), and be annoyed that they aren’t minding their own business than he is to think, “Gee, maybe I ought to comb my hair!” He’s also far more likely NOT to do it for that reason because it’s conformity, and just other people insisting he “change who he is.” (By the way, “I am my messy hair,” is acceptable because our hair really Is part of who we are.)

Of course this isn’t a forum about Asperger Syndrome, so let me make the connection between the above and ADD.

From your video, along with posts here and some other reading I have been doing, I’ve been able to discern that for an ADD’er who is NOT also on the Autistic spectrum to change habits doesn’t feel so much like changing who they are anywhere near as much as it does for an ADD’er who IS on the spectrum.

When it comes to this difference, it may be easy to say (as it is with many ADD traits), “Everybody sometimes has that problem!” Trust me, just as with traits of ADD, nobody who isn’t Aspie does not have “that problem” to the depth and severity that an Aspie does.

Changing a habit, for some Aspies, is infinitely more difficult for an Aspie than it is for a non-Aspie. It can involve a philosophical adjustment in thinking. Coming to an understanding that forming new habits isn’t necessarily an “assault” on my being took me decades. I had to learn that “improving” one’s self doesn’t necessarily mean there was anything inherently WRONG with me before I developed the habit. I do understand now that though I may have been improving myself, I am still the same person, with the same core principles and basic beliefs I always have been (less any mistaken ideas I have since learned were mistaken).

But I’m fifty years old! I was at least into my thirties before I even BEGAN to understand that. It took until my mid forties to completely absorb the concept. That’s very late in life to learn something most people know intuitively at a much younger age, and presents a severe disadvantage because of the late onset of understanding.

And therein lies the problem. The only way I know of to learn that concept is the way that I learned it! I’m trying to figure out a way to teach this to my kids the same thing in a way that they can understand it at a much younger age.

Whenever I talk to them about stuff like this, all I can seem to do is either bore or confuse them, or both. It’s like they are in a “bubble” of thinking within their own minds, just as I was at their age. Concepts like this seem so foreign, and makes little sense when put together with what little they know already (or think they know).

It’s frustrating because I KNOW exactly how they feel and how they are thinking, because I WAS THERE once!

Aspies have a stronger sense of need than normal to “test” everything they hear is the way things are. They aren’t built to learn from others experiences, they are hard wired to learn only from their own, and accept only what they have been told that actually holds up during their own experimentation. I can’t tell you how many times my kids have disregarded things I have explained to them for months or even years, then suddenly one day, after a long time of testing what I’ve told them (unbeknownst to me), come to me and say, “Hey dad! Remember when you told me [fill in the blank]? Well I’ve been [fill in the blank], and I figured out YOU WERE RIGHT!”

i know that probably sounds familiar, but it’s to an extreme with my kids. I’m afraid one day one or more of them will one day come to me with big gummy smile to tell me I was right about BRUSHING THEIR TEETH!

Sorry this is so long. One of my own Aspie traits drives me to be as detailed and accurate as possible. Unfortunately, my ADD tends to also cause me to be repetitive because I can’t remember what I’ve said and what I haven’t, which as a combination leads to rather lengthy posts. Drove my college instructors absolutely NUTZ!

In closing, the only idea I’ve been able to come up with probably couldn’t have been done with my kids at a much earlier age, because they wouldn’t have had enough of their own experiences to draw from yet.

And that is to ask them to recall situations during which I advised them, and they later learned what I asked them to do was actually a good idea. Many of those situations involved habit forming. If I can’t yet get them to understand the concept of viewing new habits as nothing more than personal improvement rather than changing who they are, maybe I can get them to just remember habits they HAVE developed, that do now have a direct positive impact on their current life experience.

MAYBE, from there, they might be convinced that because past habit forming didn’t really change their core being, new ones from here on won’t either.

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