"Do or do not. There is no try."

February 5, 2006

A common attitude encountered by those of us who have "hidden" disabilities - like ADHD, autism, depression, etc. - is "if you'd just try harder, you'd be successful." Or "stop using your disorder as an excuse to avoid working hard." Or (my favourite) "just get off your ass and do it, you lazy bum!"

To those who espouse those views: I am not Luke Skywalker, and you are not Yoda. This is not a case of "do or do not; there is no try."

Telling someone to use the force is only useful if that person actually possesses the power to use the force in the first place. If Yoda had told Han Solo to raise the Millenium Falcon using the force, Han would've laughed in Yoda's face and told him where to go. And I wouldn't blame him. But if Han needed to get the Millenium Falcon out of the swamp at Dagobah and he really couldn't do it himself, he might get Luke and Yoda (or just one of them) to use the force to help him out with that task.

That's the useful advice.

Not "this is something that needs to happen, so even though your history indicates that you are more likely to fail in your attempt to accomplish it, you should just do it anyway", but "this is something that needs to happen, and since your history indicates that you are most likely incapable of doing it on your own, you need to find ways to get it done - ask people who are able to do it to help you figure out some solutions."

I find that people who do not have a disability are incredibly uneducated as to just how difficult life can be for those of us who are disabled. It's like they think that if a person has an invisible disability, then they aren't really disabled, and if they would just "deal with it" then they would succeed in life.

No, not all of my problems are because of my ADHD. They might be more complicated because of it, but they definitely aren't all due to ADHD. Some of my socialization problems are absolutely due to missing information when I was younger, but some of those problems are so obviously caused by my upbringing that it's actually kind of crazy to try to blame them on anything else. And I may have what's termed a psychological/psychiatric disorder, but I definitely am not crazy.

I have worked like a dog to get as far as I have in my life, and nothing has ever gotten easier for me.

The very simple fact of the matter is that my brain functions completely differently than someone who doesn't have ADHD. I feel like my brain is broken sometimes because, in a very real way, it actually is broken - compared to non-ADDers, that is. (I hold that my brain is actually just fine as it is because God doesn't make anything that isn't the way it's supposed to be, and that the reason I have to take meds and need reminders and stuff is more due to there being something wrong with society than there being something wrong with me.)

I have a fairly good sense of which things in my life I actually have control over and which things I am incapable of handling on my own. In fact, I probably have a better idea of that than other people do about themselves. Meds make some things easier, but they definitely don't make anything suddenly happen without any effort. And I am prepared to work on things so that I learn those skills that I don't have, but you know, some days it just seems like everything is a lot harder for me than it ought to be.

But that doesn't mean that my ADHD is something I need to overcome, either. It's hard-wired brain function, and an intrinsic part of my identity. How it's possible to "heal" or "overcome" something like that is beyond me. Neither do I consider it a wonderful thing to have. It definitely has drawbacks! But I am learning to work *with* my ADHD instead of compensating for it.

When I compensate for my ADHD, I am "trying harder" and still failing. Before I was diagnosed and started taking meds to help with my symptoms, I had incredibly high anxiety levels. I was using anxiety to compensate for my ADHD traits and on the road to developing a full-blown anxiety disorder (which probably would have manifested as Generalized Anxiety Disorder coupled with Obsessive-Compulsive Disorder). My mini-breakdowns and voyages into the realm of depression and suicidal thoughts have dropped off dramatically since I started on the meds.

And nothing's really changed.

I still have ADHD. I still have all the same issues - social isolation, financial difficulties, etc. The difference is that some of the things that were causing me the most trouble are now under control - thanks to the meds - and I am learning to deal productively with the other stuff. Because my anxiety levels are lower, my mood is more stable, which makes it easier to handle problems when they do arise. And my anxiety levels are lower because the problems are slowly becoming fewer.

When I work with my ADHD, I don't have to try harder. I find ways to use those ADHD traits and symptoms to get me through tasks that are necessary. I tend to hyperfocus on the computer, so I avoid using it when I am going to have to be somewhere at a certain time - and I freely use it to accomplish projects that I consider very important, like writing and research. Once I get started on any task, I remain "stuck" doing it until something attracts my attention elsewhere. So I use that momentum to get all kinds of things done.

But others don't see it that way. In fact, others who have ADHD themselves don't always see it that way. Rather than recognize that, because we are all different people, our ADHD must obviously affect us all differently as well, there are people out there who think that all ADHD is exactly the same, and so a person who has different challenges must not actually have ADHD.

An autistic individual, whom I have never met offline, had this to say about the first version of this essay (he is not speaking of me but those who say we should just "try harder" or "just do it":

I will say this... immediately I got the impression that they can solve all disabilities with some "elbow grease" as it were. Perhaps by the same token a hammer will help dandelions grow because it's been proven to work on nails.There are some aspects to a disability that cannot improve with "exercises" and some can get worse. One case in point is my sensitivities to certain sounds. I cannot desensitize myself. Another example might be sexual preference. While it's true that behaviours can be blocked, one cannot take away a person's preferences regardless. (And inhibiting and not fulfilling those needs can cause much stress in life to the point of feeling effects of starvation and unfortunately, gaining weight... which can become a vicious cycle.)There are exercises that can be used for coping and there can be some things which are "grey" between "is the disability" and "is the lack of effort" but in either case, recognition of the disability is needed and understanding one's limitations is required in order to be able to progress on any "progressive" kind of work. In a make or break situation, nature will just take its course and repercussions can happen and dealt with sometimes. It is tragic when systematically, people are put in positions of dire make or break situations with known limitations and it isn't quite fair. The expectations need to be there and constant encouragement need to be there and not a lot of "blame" for "the past".

He is so right. Like anyone else, we need encouragement, not criticism. We need assistance and understanding, not denial and blame. We are often much better at blaming ourselves (not our disabilities) for things already.

These invisible disabilities cause a lot of inconsistency in behaviour. And those of us who have these inconsistencies are, as a general rule, unable to explain why we are able to perform a task perfectly one day and incapable of even beginning it the next. (In fact, substitute "second" for "day" and you'll have the full picture.)

Related Links:

ADHD and Executive DysfuntionQuote "Executive functioning includes the abilities to plan, prioritize, organize, persist, multi-task, move toward a goal, delay gratification, and self-monitor. Executive functioning often involves inhibition and waiting."

InertiaQuote "In high school, I passed many hours thinking about how I wanted to be doing my homework, being frustrated with myself for not doing my homework, making elaborate plans to try to get myself to homework... and still not starting my homework. When I've tried to describe how this worked to others, I've generally been met with disbelief. "If you didn't do it," they say, "You must not really have wanted to." This idea seems to function partly as a belief about how people work, but also partly as a definition -- what a person wants to do is almost defined as what they end up doing."

Some tips on how to manageQuote "Executive dysfunction involves problems with planning and executing tasks. Sometimes the "simplest" tasks, such as grooming, are very difficult for autistics due to executive dysfunction. Since each person with executive function problems will exhibit different strengths and weaknesses, the methods for dealing with these problems vary quite a bit. The methods presented below work well for myself - they enable me to live independently in much the same way as a neurotypical. Without these methods, I would be unable to do this... Of course these strategies aren't perfect. Even with them, I often find I'm having trouble with maintaining my living space, for instance. But certainly they are better then the alternative of trying to do these things in the same ways that neurotypicals do them!"

"Ritalin doesn't cause violence."

February 7, 2006

There is, among the many online communities to which I belong, a wide discrepancy of belief as pertains to the treatment of various disorders.

There are people (usually newly-diagnosed with ADHD, or people who have no clue what it's like to have an actual clinical disorder as defined by the DSM-IV) who believe that disorders are either not real or else they are a natural state of being, so no medicinal treatment is necessary. There are others (much like the above) who believe that any medication you have to get from a pharmacist is evil, but "natural remedies" you get from a health food store are fine. There are even some people out there who believe that it's better to focus on accepting disabled people "just as they are" - which seems to entail not lifting a finger to help, even when the disabled people are asking for specific assistance.

I approach this issue from a few different angles.

First of all, as a respite worker and former ABA therapist, I have seen first-hand the effect that appropriate teaching can have on a child. I have seen silent children become chatterboxes. I have seen breakthroughs in understanding of concepts that everybody at the child's school had given up on him ever learning.

So I support appropriate, individualized teaching models for those whose learning styles are not quite suited for the "traditional" education model.

Of course, there is a flip side to this teaching, and that is the abusive and inappropriate teaching methods that are employed daily by professionals who haven't taken the time to truly learn what their client actually needs.

I have seen animated, outgoing children completely shut down socially in the presence of such professionals. I have seen children's distress ignored by these professionals. I have seen programs that were attempting to teach advanced concepts to students who hadn't yet mastered the most basic concepts in the area being taught, in the name of appearances.

I do not support these abusive, inappropriate teaching methods, and I wish I could say that I have never used them myself.

I can't.

But, I digress.

As an adult who has ADHD, I have felt the effects of appropriate medication. I have made positive changes in my life as a result of the combination of proper medication and counseling.

I fully support the appropriate use of medication to control symptoms, when the cause is known.

I have also felt the effects of inappropriate medication. I have had mood swings and been sleep deprived due to "too much of a good thing".

I do not support the use of medication to control symptoms that are of unknown origin, nor do I support its use to control behaviours that have not been carefully analyzed. All behaviour has a source, and if you want to get someone to stop doing something, you need to figure out why they're doing it - not just put them on some medication and hope it makes them more submissive.

As an individual who is lactose intolerant, and who has done both the GFCF diet and the elimination diet (used to determine the presence of food allergy), I have felt the effects of eliminating a food from my diet that causes me physical discomfort.

I fully support the use of special diets to alleviate symptoms of digestive tract sensitivity (including food allergy). I refuse to support the use of special diets to "cure" disorders whose roots lie in brain structure - something that is primarily determined while in the womb.

Professionals rarely know everything.

I will close with a story about medication gone awry and one professional's ignorance.

When I was first diagnosed with ADHD, I was given a prescription for Concerta, a long-acting form of Ritalin. I took it at 36mg, every morning, for about two months. Then we tried upping the dose to 54mg, which was a very big mistake.

You see, I have had many problems with anxiety in the past. Stimulants in the Ritalin family have a strong (and well-documented) tendency to increase anxiety.

The 54mg dose of Concerta increased my anxiety beyond anything I had ever experienced previously. I cried at the drop of a hat. If something bad happened, I became severely depressed and almost suicidal. I only took it for a week.

Now, the main of this narrative I wish to tell you.

It is a story about a 5yo autistic boy who I used to do respite care for. His parents were doing some basic naturopathic remedies, as well as in-home play therapy and enrolment in a special education program. He was using PECS for communication.

He had been taking a very low dose of Ritalin for about two weeks, and his parents decided to increase the dose a very little bit, to see if it will have an effect. This was all being done under the direction of a doctor and at the suggestion, I believe, of the school.

This friendly, good-natured child became violent. He would hit his therapists, parents, and anyone else around him, very randomly and unexpectedly (though often in response to a demand being placed on him). His mood was extremely volatile, and he cried often. The tears were those of a child in distress.

I remember one particularly bad day. He was crying and writhing on the floor. He could not tell us what was wrong. His therapist looked on helplessly, and I felt sick as I realized that he looked exactly how I had felt when I was taking the 54mg of Concerta.

I explained this to his therapist and to his parents. His parents decided to stop the Ritalin after his next appointment with the psychologist from the agency that provided the play therapy program. They just wanted to double-check with her.

And here is the part where we get to be angry about how clueless professionals often are about these things.

The psychologist came and partway through the visit, the child's mother asked about the Ritalin and the violence, and the possible connection.

The psychologist said, "Ritalin doesn't cause violence."

I kid you not. This woman, who is supposedly knowledgeable in the field of autism treatment, dismissed the parents' concerns about their son's behaviour possibly being affected negatively by his taking Ritalin, when it is well-known and well-documented that Ritalin increases anxiety levels, which induces the "fight or flight" response in pretty much everyone on the planet. Add to this the high probability of high levels of anxiety co-occurring with autism, and you have a recipe for precisely what happened to him.

I have no doubt that this little boy was experiencing high levels of anxiety, and that because he was unable to express his feelings using words or PECS, he did it the best way he knew how: he lashed out at the adults in his life, and he cried. He cried a lot.

His parents stopped the Ritalin the next day, and they got their little boy back.