Autistic medication: some serious risks
This started out as an endnote to another post I’m working on, but quickly began to mushroom into something warranting its own space.
Most of the cognitive problems I have been dealing with showed up when I was on neuroleptics–for good reason! Lars Martensson’s paper from 1984 is well worth a read, as is one of Breggin’s on brain damage and cognitive dysfunction, for exactly how these drugs cause physical damage. I am just recently, after four years off meds and a lot of work, starting to be able to retrieve language well enough to write much in English again. It really was the equivalent of a series of good knocks to the noggin. Not all of those effects were related to language, by any means. Thank goodness for neuroplasticity!
The abrupt loss of access to near-fluent German vocabulary happened, however, after a couple of weeks taking the antidepressant buproprion/Wellbutrin. It was still in there somewhere, but the gears just stopped meshing so I couldn’t find it (and got railroad-spike headaches when I tried). I was 3/4 of the way through a modern languages BA at the time. Those same mental blocks are still there, though I have learned to work around them to some extent while relearning things. Wellbutrin also caused absolutely terrifying akathisia, complete with sudden self-immolation urges like nothing I’d ever experienced before –or since, thank goodness! If I hadn’t already learned the hard way to deal with lesser versions of that sort of thing, I would not be here. This reaction still was not called akathisia, but was treated as a psychotic symptom of my ostensible bipolar disorder.
I have reason now to believe that this was not akathisia, but a seriously reduced seizure threshold unmasking unrecognized temporal lobe epilepsy. (It is very possible to have epilepsy without tonic-clonic/grand mal seizures, though that’s what most people think of when they hear epilepsy. See also Possible Temporal Lobe Symptoms.) This was a problem with other medications–pretty much all antidepressants and antipsychotics will make you more likely to have seizures if you have an underlying seizure disorder–but bupropion is especially renowned for this. It also caused the strongest reaction; I now suspect that I was having waves of partial seizures pretty much all day long. This, in itself, is more than enough to do some damage to your memory and other cognitive functions. It will also very directly make you extremely tired and depressed.
It is worth noting, in this context, that at least 25% of autistic people are known to have seizure disorders, so this is a significant risk.
It is also worth noting, from Sudden Unexpected Death in Epilepsy, that:
Mortality due to epilepsy is a significant concern. Patients with epilepsy have a mortality rate significantly higher than that of the general population. The standardized mortality rate (SMR) is shown to be 1.6-9.3 times higher in this population.
The more seizures, the greater the risk of death or serious injury. Medications which lower your seizure threshold can actually kill you.
From a locked Dreamwidth post, because it was both so ranty and so personal:
Probably the worst couple of months I’ve ever had were on Wellbutrin/bupropion, and some of the things I’ve assumed were EPS from neuroleptics look suspiciously like clusters of complex-partial seizure activity. (Apparently being a CYP2D6 poor metabolizer, with increased-to-toxic blood levels of certain meds, could not have helped at all.) And I may well have continued to have lowered seizure threshold after stopping taking them, leading to a lot of the continuing problems; it happens.
Another quote from that one, FYI:
One of the things I was particularly interested to see, and which really got me thinking about the possibility, was the connection to migraine-type symptoms. An interesting paper (PDF): Differentiating Migraine From Epilepsy. From what I’ve been reading, I am strongly suspecting that at least most of my “migraines” are really simple partial seizures (the “aura”) followed by postictal headaches, nausea, etc. It made entirely too much sense. The two things seem to be both connected and frequently confused, anyway. I had been suspecting that a lot of the really troublesome brain fog, fatigue, and depression (“negative symptoms”) I’ve been having day-to-day might have something to do with the frequent migraines besides the medication after-effects, but, yeah, this is the kind of thing you’d expect with frequent seizures.
Yeah, I got serious migraines and cluster headaches on multiple meds. Nobody should be expected just to put up with that. Additionally, real migraines and cluster headaches will give you brain fog, depression, and anxiety symptoms. Much like the other adverse effects, the treatment for that should not be more of the same thing that’s triggering it!
And given some of the treatment I have received for being a perceived-as-mentally-ill autistic person–to the point of medical PTSD–I have not been hopping to try to get the probable epilepsy diagnosed/treated. Especially under the NHS, since if the neurologist I’m referred to treats me disrespectfully, brushes me off, or is just not knowledgeable about epilepsy (surprisingly, a real concern), I can’t easily just find another one. You are referred to a specialist, and just have to show up at the time and date given to see whoever is assigned. This does not provide a lot of incentive to treat people respectfully, IME, though that is a whole other story. :( /ETA
Come to find out, autistics have a higher risk of movement disorders from SSRIs; I would be amazed if buproprion and neuroleptics didn’t carry a similarly higher risk for us. I also got akathisia from multiple SSRIs, not recognized as such at the time–starting in 1989–along with immediate tremors and persistent tardive dystonia from atypical neuroleptics.
Not surprisingly, combining SSRIs and neuroleptics potentiates the risk of movement disorders. (ETA: And seizures, no doubt!) This makes sense, considering that they both can cause the same adverse effects. They are still frequently prescribed together, including to autistic people. I took them together for a good while.
As Amanda wrote an excellent series about years ago, when you don’t understand how someone’s nervous system works in the first place, but go messing with their neurotransmitters anyway, it’s anyone’s guess what will happen. That holds true for “normal” people, much less the neurodiverse. We get all kinds of unexpected drug effects, some of them very dangerous indeed. Nobody needs–much less deserves–drug-induced impairment and disability. There’s also precious little true informed consent out there, when it comes to psychiatric medications. Nobody should be forced or coerced into taking them, especially not when “behavior management” is the stated goal.
In this post, I’m just focusing on cognitive effects and movement disorders. With little kids whose systems are still developing, endocrine disruption should also be a huge concern.
I wound up in the psychiatric system at 13 because they did not recognize what I had as autism in the ’80s, and got heavily medicated as the “treatments” kept not working and causing strange problems. By the time I was 25, I had been on about the same number and variety of medications as Amanda reports. My experience is far from unique. Scarily, though, even a small child diagnosed on the autistic spectrum now is likely to be prescribed exactly the same kinds of medications I was given, to “manage behavior”. The risks–and even the actual adverse effects–are deemed worth it, when they are taken into consideration at all.
When I experienced akathisia, it was treated as severe anxiety and/or resistance to taking the medication, and proof that I needed a higher dose of the same. At first, I was very vocal about stopping taking Prozac due to feeling terrible; after the reaction that kept getting, I just started flushing it down the toilet in private when I was not directly forced to take the stuff. I quickly learned not to say that I was having suicidal impulses at all. After a while, I started half-believing that all this was for my own good; talk about cognitive dissonance! Years later, the agitation from Paxil was considered proof that I was really bipolar. Never was akathisia mentioned, nor even considered AFAICT.
That’s distressing but not surprising. In 1999, it came out in court that Prozac’s manufacturer had been covering up adverse effects, with internal documents showing that researchers had been aware of the incidence of akathisia. From 1978 onward, sedatives were given along with it in trials to hide the rate of serious agitation. The doctor who kept me on Prozac in spite of it apparently didn’t see the continuing recommendations to start people on benzodiazepines at the same time so they didn’t kill themselves. I’m still not sure how I managed never to make a serious attempt to do so; sheer bloodymindedness was surely a factor! Similar things have come out concerning other SSRIs (among other drugs). The FDA has mandated black box warnings for several.
The risk of extrapyramidal side effects from SSRIs is still barely taken into consideration, black box warnings about agitation and suicide or no. One professional article from 2001 admits that movement disorders, including akathisia, are a known risk, but goes on to say that “Mistaking comorbid anxiety for SSRI-associated akathisia may delay or interfere with the appropriate treatment of the patient’s anxiety disorder.” True, but it’s still working the other way around one hell of a lot more frequently, with not just misery but risk of death resulting. A lot of people are getting hurt. Even scarier, concerns about SSRIs’ risks and placebo-level effectiveness have led to atypical neuroleptics being prescribed instead for depression in the U.S. Even more people are liable to get hurt.
Possibly the most evil sentence I have read lately: “Thus, higher-functioning children and adults with autism might think about suicide when they become aware of their deficits.”
This comes from an article in The Journal of Family Practice. Funny, I was on the meds because of my perceived deficits, and got akathisia. This statement is an excellent illustration of just how seriously too many medical professionals treat any problems experienced by autistic people, even more so if we’re deemed to have extra “mental illness” on top. It’s all our deficits, and these attitudes can kill us.
I am all too aware that a lot of people, including medical professionals, would be eager to dismiss what I’ve been saying (references and all), because of my autism and my history in the psychiatric system. I have hesitated to seek specific treatment for the dystonia now that a psychiatrist isn’t giving me muscle relaxants to go with the other meds. I know that a lot of people–again, including doctors–either refuse to take this kind of lasting effect seriously, or will openly say that it’s just the wages of being crazy/autistic/whatever. This also hurts one hell of a lot of people.
Most of the results from any of the cluster of searches on “autism SSRIs/neuroleptics akathisia/movement disorders/EPS” advocate the use of these medications for our betterment.
I did not think there were any still, but Risperdal is the only FDA approved drug for autistic “irritability”, since 2006. “Although there is no cure for autistic disorder or treatments for the core symptoms of autistic disorder, scientists are researching ways to help.” (“Helping build small victories”) Knowing that makes me feel a lot better. I know risperidone helped me.
I feel like a need a bath. With a stiff brush and possibly Clorox.