Thoughts on Autism and Behavior Modification

As I said yesterday, autism sucks sometiems. This doesn't mean it needs to be eradicated. Then again, not eradicating it doesn't mean not pursuing treatment for its bothersome symptoms. I would pursue treatment for certain symptoms even in an ideal society. For example, I take medication for irritability and anxiety and see no reason not to.

Where it gets trickier is when I'm forced by circumstances to pursue treatment, and others dictate what kind of treatment I get. I may legally be an adult, but I am not in a position to live without supports, which in essence creates a power dynamic in which my staff largely determine whhih of my symptoms get treated and how. Behavior modification is staff's favorite treatment modality, and even though originally, behaviorists tended to include the environment in their assessments of behaviors, B-mod has largely gone down to ignoring and/or punishing "negative" behaviors and sometimes rewarding "positive" ones.

I put these two between scare quotes because, what is perceived to be a positive or negative behavior, is not always (or rather, is rarely) objective, and even when a behavior is by most perceived to be positive or negative, the way it's handled may still vary depending on people's perceptions of what is behind said behavior (which, I might say, the original behaviorists didn't care about). For example, as long as I'm not acting out aggressively towards others (which icnludes mild verbal aggression), I can exhibit as much self-directed violence as I need to. I assume the idea behind this is that I'm borderline and borderlines need to be responsible for their own behavior and its consequences. I've had people seemingly more annoyed at the fact that they had to take care of my physcal wounds than concerned at the fact that I'd inflicted them.

Now we've moved past the times when cognitions, emotions etc. didn't exist. Lay behaviorists (ie. most staff) have taken just what they want out of behaviorism. I remember in 2008 my diagnosing psychologist recommended a functional bheavioral assessment on my meltdowns. This includes close observation of behavior, antecedents and consequences, in order to hopefully find the stimuli that trigger the aggressive response. Now I've not yet figured out what I think of this, but I never got to, since such an assessment never took place. The staff introduced seclusion, used it as a threat when I became even slightly irritable, noticed that made my behaviors decrease and decided this was the cure.

Now let me tell you: autistics have as much emotion, cognition and sensation as neurotypicals, we just experience it differently. If you wouldn't want to be subjected to harsh behaviorism yourself, then don't subject an autistic to it. If you want to eradicate a behavior, observe its situational context closely and consider how you would respond in this situation. Is the autistic perhaps trying to communicate the same that you would in this situation, only using a different modality? Are they perhaps responding to sensory overload the same you would, only experiencing this overload differently than you would? If so, consider meeting the autistic's needs beofre you attempt to modify their hehavior. If you want to modify their behavior anyway, consider whether you would want your preferred B-mod method used on yourself. I think everyone who has the power to seclude, restrain or tranquillize another person, needs to have expierenced it themselves first. Lastly, don't assume that just because the autistic isn't displaying behavior that annoys you, it means that they're coping fine.

Medication Treatment of ADHD Symptoms in Autistic Children

Autistics often have symptoms of ADHD. These symptoms are often treated with medication. About 15% of autistic children take psychostimulants or atomoxetine (Rosenberg et al, 2010). Stimulants are proven to be effective for ADHD in non-autistic children. Whether the same holds true for autistics, however, had not been systematically researched until now. Reichow, Volkmar & Bloch (2013) examined seven randomized, double=blind, placebo-controlled studies comparing methylphenidate, clonidine or atomoxetine to placebo in children with autism spectrum disorders and ADHD symptoms. Four trials were found for methylphenidate, two for atomoxetine and one for clonidine.

According to Reichow et al. (2013), methylphenidate was found to be effective for ADHD symptoms in autistic children. The effectiveness was slightly lower than it is for typically developing children with ADHD but still statistically significant. There was a greater risk of side effects in autistics, particularly for irritability, depression and withdrawal. The risk for common side effects such as insomnia and decreased appetite was similar to that found in typically developing children. One of the studies involved preschool children, and it was recommended by Reichow et al. after reviewing this study that methylphenidate-taking preschoolers with autis be closely monitored due to increased adverse events.

Clonidine and atomoxetine both showed moderate but not statistically significant effectiveness in autistic children (Reichow et al., 2013). These medications warrant further study, also given the fact that only one or two studies were found that met the inclusion criteria for a systematic review.

References

Reichow B, Volkmar FR, & Bloch MH (2013), Systematic Review and Meta-analysis of Pharmacological Treatment of the Symptoms of Attention-Deficit/Hyperactivity Disorder in Children with Pervasive Developmenetal Disorders. Journal of Autism and Developmental Disorders, 43(10):2435-2441. DOI: 10.1007/s10803-013-1793-z.

Rosenberg R, Mandell BS, Farmer JE, Law JK, Marvin AR, & Law PA (2010). Psychotropic Medication Use among Children with Autism Spectrum Disorders Enrolled in a National Registry, 2007-2008. Journal of Autism and Developmental Disorders, 40(3):342-351. DOI: 10.1007/s10803-009-0878-1.

Autism and Justified Anger

On my autism treatment and acceptance, Autisticook commented by saying that anger in an autistic is often justified. She compared it to the situation where a wheelchiar user gets angry because they are faced with yet another two-step staircase that wasn't necessary and where nobody thought of installing a ramp. This made me think: are we overpathologizing anger in people with developmental disabilities (and mental illness)? Are we incorrectly assuming that anger is part of the disorder, while it's just a response to a lack of accommodations? This is obviously not a scientific discussion, as what is a reasonable accommodation depends on your perspective.

I just a few days ago heard about cognitive accessibility, where people accommodate their language, for exxample, for understanding by people with learning difficulties. I'm trying to find an accessible and understandable explanation of this, but can't seem to find one. What I understan dit to mean, includes for example using simple, straightfoward language. With autistic people, you may need to refrain from using figures of speech, for example.

What if you were dropped in a country where you didn't speak the language and everyone refused to speak English? Would you get angry? Quite likely you would. Now understand autism as communicating in a different language, too. Is it strange then that the autistic gets angry when you routinely refuse to make an effort to speak their language?

Autism is not just a communication disability. It's in a way a sensory disability, too. Imagine, again, being in that foreign country and everyone shouting at you for whatever reason. They also randomly shine a flashlight at your eyes for whatever reason. In addition, this country is rich on insects, and they crawl over your body all the time. Would you get frustrated? Sure you would!

We do not medicate wheelchair users for getting frustrated at the umpteenth staircase. You would not want to be put on medication if you were in the aforementioed country. So why do we medicate autistics who are irritable? It's probably because accommodating them requires a radical paradigm shift in what we always thought access was all about. Is it a more radical shift than the shift towards wheelchiar accessibility? I am not sure.

Autism, Special Interests, and Elevated Moods

Many years ago, I read an article on Suite101 or About.com or the like that discussed similarities between Asperger's Syndrome and bipolar disorder. The parent who wrote the article described her son's mood swings from elated to depressed. However, she realized that these mood swings were related to whether the son could engage in some special interest.

I find the same thing happen to me, but in my case, it also ties in with the dissociative or emotion dysregulation symptoms. I find that when I'm in a particular personality state, I engage in a certain special interest a lot more than when I'm in another state. For example, Clarissa is my blogger part, who is behind most of the posts on this blog. Annemiek is my crafter. And I at this point can't think of anyone else.

Getting back to mood swings, I must say that I get very elated when I engage in a particular interest for a certain period of time. I uttered the phrase that I would've been manic if I experienced this (mania) at all. In a way, this is extremely inappropriate and comparable to when a currently mentally healthy person talks about "going all OCD". I in no way want to say I suffer from bipolar (hypo)mania, but these mood swings do get problematic at times.

For example, last night I didn't sleep at all. I spent around $80 on useless online services without even bothering to read the not-so-fine print that clearly said these services would not be working for me. I actually took a PRN Phenergan at 2:00 AM, before I went ont he shopping spree, but swung right through it. Phenergan, for those not familiar with it, is a strong tranquilizer or low-potency neuroleptic. I'm now relatively calm again, so again I in no way mean to compare myself to people who have these experiences for weeks on end, but I do see actually how this could become a problem.

So, should autism parents limit their children's special interests in order to prvent this from happening. I don't think this is universally the case, but parents must teach their children about time and money management. I, having been pretty stingy as a child and teen, never really had to learn about this. I always had enough money on my hands anyway. I actually must say I have no clue about budgeting, and really don't know whether I need to learn it yet. I guess so.

Autism Treatment and Acceptance Are Not Mutually Exclusive

Oftentimes, there seems to be a dichtomy between those autism advocates who want treatment, and those who want the autistic to be accepted. Usually, parents of people with more severe autistic symptoms and/or intellectual disability want their autistic to be cured, while those autistics with more intellectual and communicative abilities advocate acceptance. This is not always the case, of course, but often it is. Therefore, it is somewhat understandable that autism parents tell autistics that we are not like their child.

What I want to discuss in this post, however, is whether treatment and acceptance are truly mutually exclusive. Of course, a cure that will fundamentally change a perosn's information processing, is contradictory to accepting that processing difference. However, at this point there is no such cure, like genetic engineering or neurological rewiring, which is what it would take to make autism go away entirely.

Do these autism parents who advocate cure, truly want their child's every autism symptom to go away/ I do not know, but it is possible that what they truly want to go away are certain aspects of autism that are debilitating to the child. I do not disagree with this. I, too, take medication to help curb my irritability, for example.

Truly, would you want your child's autism to go away if it made them a very much in their interest invested professor, if a quirky one? It is known that Temple Grandin is autistic, and yet she reached Ph.D. status. If I have to believe her own statements, this is largely due to her special interest and her good ability to empathize with animals. The same likely goes for other "higher-functioning" autistics, but then again these are discredited for disagreeing with the curebies.

Now I get to acceptance. As I wrote in a previous post, accepting the person is different ffrom accepting their every behavior. Hardly any autistic would want themselves or another autistic to be continually aggressive or self-injurious. Also, most parents tht I've met online who advocate treatment for their children's autism, actually love their children to pieces. There are a few who wish their autistic child were taken back by the changelings, so to speak, but these are rare.

So really, is it hypocritical to want treatment for autism if you want to be part of the autistic acceptance movement. While a complete eradication of autism, and thereby autistics, is contrry to acceptance, treatment for the most severe and disabling symptoms, is absolutely not. And this is where views often clash: those with more severely autistic children, want to pretend that treatment will eradicate all autism, and they at the same time pretend that those who disagree, are not autistic at all. Well, fine with me. If you want your child to be like me in terms of functioning, that's okay, but that is not curing them.

ETA: with my sentence about my understanding that parents want their kids to function like me, I didn't mean to place myself above autistics who appear to be "lower-functioning". I realize that's how it comes across. I do want to say that I understand, for example, that parents want their children to have a meaningful way of communicating or have minimal aggressive or self-injurious behavior. I do not feel that any autistic should be forced into neurotypical appearance.

To Medicate or Not to Medicate?

Yesterday, I was searching for autism bblogs and stumbled across Pam Byrne's blog. In one of her latest posts, she writes about her son's increasing and then decreasing behavior problems. One of the things that stuck out to me was the tough choice Pam made to medicate Alex.

Back when I first learned aobut autism, it was through Autistics.org and other autistic advocacy sites. I was a firm opponent of medicating for behavioral control, believing that an autistic child or adult should be helped with proper supports, not dulling meds. Particularly neuroleptics (antipsychotics) can cause severe cognitive dulling and other side effects with autistics, so I reasoned one should stay away from those especially.

That was in like 2006 to early 2007. In July of 2007, however, I was about to move to a new city and into independent living. I was having terrible meltdowns related to this. My community psychiatric nurse suggested a psychiatrist's consulttion, and I agreed. The psychiatirst listened to my story and thought for a bit. Then she started to describe what she thought medication should do for me, and I paged my inner pharma encyclopedia to find out what she might be thinking of prescribing. She suggested Risperdal, an antypical antipsychotic. I had little opportunity to change my situation in any other way - the move, that was one of the worst moves in my life, had already been scheduled for the next week -, so I felt I had no other choice but to consent to the medication.

This was a bad choice: I had quite serious side effects that weren't being taken seriously, and the med was used to dull me into submission when in fact living on my own was not suitable for me. I tapered myself off the Risperdal two months into my new living situation. Three weeks later, I landed in a psychiatric crisis tht led to hospitalization.

The psychiatrist who admitted me into the hospital recognized the need for better supports rather than medication. I agreed and was med-free apart from a PRN tranqilizer now and then for over two years.

However, supports have their limits. Especially in a society that relies on massive budget cuts, it's not like you can actually get perfect supports. I at least can't. Also, I have always wondered whether medication could somehow help me reduce the overlaod that is actually quite inherent in my experience of autism. Medication should not be used to manage behavior in an unsuitable situation, but what if one's support situation is as suitable as can be? Could meds actually calm the autistic mind when it is nonsituationally unquiet?

I asked to be put back on meds in early 2010. The medication suggested by my psychiatrist this time was Abilify, another atypical antipsychotic. And to be quite honest, I like it. I started at a very lwo dose, which had to be increased three times. Not always did I agree to this, in the sense that on occasion I've felt that supports could've been improved, but they won't whether I'm on meds or not. I have minimal side effects even on a pretty high dose of Abilify, and I can tell, three weeks after my l ast increase, that I'm happier this way. So is Pam's Alex. Of course, with a child or non-communicative or intellectualy disabled adult, it's harder to tell whether the person is truly happier than with a person like myself, who can communicate reasonably well. This is why I still advocate taking proper care when thinking of putting a child or communicatively impaired or intellectually disabled adult on an antipsychotic. These meds do dull cognition, and it can't be known in these cases whether the person is truly less irritable. I strongly oppose the idea that this is not important, except when a person is severely aggressive or self-destructive. In cases other than this, a person should only be put on meds if they'll actually be feeling better. I do, and going on Abilify was therefore one of the better decisions I've made in my life.