-a nurse at a mental institution I was in
Dr. R. knew what it was like to have to live most of your life on medication. He didn’t feel quite like himself on his ADD meds. And he badly needed them in order to work at his job. Even with the meds his secretary had to work harder than most secretaries to accommodate him. Off his meds he literally could not complete a full sentence because his mind and interest raced from one topic to another so fast his mouth couldn’t keep up. So he took “medication holidays” most weekend where he wouldn’t have to have many responsibilities that required concentration. And his ADD was more severe than that of most people I met, so it wasn’t just a case of “I could function without my Ritalin, I just choose to take it or not on a whim.” He could not function without it, he needed constant assistance from others without it. And yet he still chose not to take it some days, because he found that he felt like too much of a different person on the meds, a person he couldn’t fully recognize or identify with.
As a result, he preferred to give his patients as little medication as he could get away with. As in, the bare minimum to help the person function, and if it was not helping the function and he knew it, he would taper them off it altogether.
The nurses and psychiatric technicians who hung out behind the nurses station and gossiped constantly (but who suddenly were “busy charting” if a patient needed help)… I spent a lot of time in isolation rooms that had a door opening into the nurse’s stations. And the nurses and psych techs loved to use neuroleptics (a.k.a. antipsychotics, major tranquilizers) and minor tranquilizers (a.k.a. sedatives, hypnotics, etc. stuff like Ativan/lorazepam) in order to incapacitate patients and make us easier to manage. So one day, when I was tied down an isolation room just behind the nurse’s station, I heard them talking about Dr. R.’s decision to decrease one of my medications.
Dr. R. had noticed, and written in his admission and discharge summaries, it went something like… “We’ve found that the amount of medication required to control Amanda’s destructive behavior is uncomfortably close to, and sometimes exceeds, the amount of medication that renders her completely incapacitated.” Well, yeah. Neuroleptics work to control behavior. And they are now and have been for at least ten years, been recommended for autistic people’s aggressive behavior towards ourselves or other people. Eventually getting to the point where some doctors only know they’re prescribed “for autism” and prescribe them to all their autistic patients, which is horribly irresponsible. Anyway, neuroleptics work to control autistic people’s behavior – and other people’s behavior. They’re rampant in the developmental disability world for auties, people with intellectual disabilities, people with cerebral palsy, people with severe multiple handicaps, etc.
And they work to control our behavior by disrupting the links between thinking and acting. A person on neuroleptics may look tranquil, hence the word ‘tranquilizer’. But on the inside, we may feel lost, confused, as if our mind has been scattered to the winds and we can’t find all the pieces and put them back together again, agitated, restless, furious, terrified, all these things at once. But it won’t show on our face or body unless we get the side-effect of akathisia. But so few people know about akathisia (severe restlessness that can escalate to violence) that they’ll take the akathisia as a reason to give more of the drugs that are causing it in the first place.
Akathisia can become permanent, too – it’s a myth that tardive dyskinesia is the only permanent side-effect of neuroleptics. (“Tardive” basically means symptoms that appear slowly rather than all at once. The tardive movement and cognitive syndromes that can occur in neuroleptics are often permanent, even if you remove the drug. There’s also acute versions of the same conditions, that do go away when you remove the drug. Acute akathisia vs. tardive akathisia, for instance.) The tardive syndromes I’m most aware of include:
- Tardive dyskinesia, which can range from a slight involuntary movement at the edges of the tongue, to full-body contortions that are so severe they can inhibit breathing and kill people.
- Tardive akathisia. That same psychological and motor restlessness, only it doesn’t go away once you stop the drug.
- Tardive dystonia. Any form of dystonia (a movement disorder, I’m too tired to Google it and give you information) that remains permanently after the drug has been discontinued.
- Tardrive dementia. Cognitive impairment that does not go away after the drug has been discontinued.
When I say “does not go away”, I don’t just mean the first year of being off of these drugs. I mean that it doesn’t go away pretty much ever. It may improve to an extent going off the drugs, but then plateau and stay at the same level. It may actually get worse going off the drugs, because some of the drugs have effects that mask the full extent of the tardive dyskinesia or other tardive syndrome.
And did I mention that neuroleptics are generally a bad idea for autistic people with catatonia? Yeah. Not that they knew that when they were busy loading me full of thee drugs. Because there were only two papers out on autistic catatonia at the time, and it didn’t even have the name autistic catatonia yet. The first article that wasn’t a case study, came out about a year after I stopped neuroleptics. But it explained why (I didn’t notice this, but my whole family did, so it must be real) the moment I went on neuroleptics – not even long-term, just my first dose of Thorazine and Haldol for behavior control in a (different from the above) mental institution. The moment I took them apparently my motor skills took a nosedive they’ve never recovered from. It was like they accelerated the progression of the autistic catatonia.
I know someone else with autistic catatonia. They were on Mellaril throughout a lot of their childhood. It was only after someone decided to take them off of it, that they learned to use speech for communication. They were twelve years old at the time. In my case, I began showing obvious symptoms of autistic catatonia (not “catatonic traits that exist in all autistic people”, but actual deterioration of my motor and speech abilities) at the age of 11 or 12. I was first given neuroleptics at the age of fourteen. Which made me lose skills much faster. When I went off of them at age nineteen, I had a period where everything got much, much worse, and then a gradual period of things getting better, and then I went back to my previous pattern of one step forward and three steps back, when it came to losing motor planning skills.
Anyway, I just remembered the scorn heaped on Dr. R. by the nurses, because he made it very difficult for them to use chemical restraints for their own convenience. Shortly after this happened, they resorted to deliberately escalating situations – such as grabbing me and hauling me to the isolation room for no reason at all, with no warning at all – and if I struggled, at all, then I was a danger to others and it was okay for them to tie me down and drug me. Dr. R. was not happy about this, so he assigned me and another patient who was getting treated similarly, a one-to-one aide from Visiting Nurses, who could take notice of anything the institution staff were doing to control me. One day one of those aides saved my life, but that’s a long and traumatic story I have no interest in rehashing at the moment.
Suffice to say, for Dr. R.'s patients, “Decrease , that’s Dr. R…” was a good thing. He didn’t always succeed, and he had all the dangerous biases that decades working as a psychiatrist would give a person. But he tried. He tried to give the smallest amount of a medication he could, that would still work, and he’d work with you on “drug holidays” if that’s what you and he felt you needed. So despite his shortcomings – ones he shared with most in his profession, unfortunately – he was still the best psychiatrist I ever ran into. It wasn’t just the ADD either – he grew up with a speech impediment and social problems, and he had attempted suicide at least once as a teen. When he heard about the autistic community’s use of the word “cousins” (people who are not autistic but share many autistic traits, especially perceptual or social traits), he said he was a cousin.
And he’s the one who helped me get off my psych drugs in the end – all of them. It was harrowing, even tapering slowly. But we both acknowledged it had become a “the old lady who swallowed the fly” situation – most of the drugs were to treat side-effects of other drugs. In psychiatry there’s an unfortunate tendency to look at side-effects as “this always existed and the drug just unmasked it”. Like… my neurologist gave me a migraine drug once, Topamax, that changed my personality in a very severe way. And when my friends told him what was going on, he just said “Discontinue it, immediately.” Within psychiatry, those personality changes would’ve been said to be an underlying psychiatric condition that the Topamax unmasked, and I’d be given drugs to “treat” that condition, which would then “unmask” more conditions I didn’t really have, and so on. So he helped me get off of everything. He believed in me even when people were saying the withdrawal symptoms were proof I belonged on the drugs after all. He stuck with me the entire year it took for me to get back to what was now normal to me. He continued to make some major mistakes, but now that I was a legal adult and off of my meds enough to think clearly, I was able to get away from those mistakes in a way I hadn’t been able to as a child.
I never became the next Temple Grandin, which is what he wanted me to be. But I think if he’s still around (he was old and had a heart condition, so he may well be dead), he’d be proud of what I’ve accomplished in self-advocacy and research alike. And he’d be glad that my physical problems were finally being diagnosed for what they were – he’d early on had to help me fend off doctors who believed my physical problems were psychiatric in nature just because I had a developmental disability and a long psych history filled with diagnoses and misdiagnoses. I hope he got a chance to watch at least some of that unfold. I lost touch with him after he retired.
Anyway… I’m still proud of him for decreasing my meds and helping me get off of them, and believing in my ability to get off of them, even in the face of overwhelming pressure to do the opposite and have me so sedated (actually, at that point, twice the toxic dose of a neuroleptic, plus another neuroleptic on top of it) that I was falling asleep everywhere and having atonic or myoclonic seizures every few minutes when I was awake.
I’ve always been ambivalent about him – he seemed like a character in a book who is good but has a tragic flaw – but in this area, I am absolutely happy with the majority of decisions he made. The majority, mind you. But that’s more than I can say for any other psychiatrist I’ve ever had. I really lucked out, because he was rarely on duty, and the night I came in I was assigned to him because he was on duty that night. He instantly figured out that I was autistic (even though I was there for suicidal behavior), he saw me as something akin to an “idiot savant” (his words, not mine), and he developed a strong bond with both me and my family that carried us through some of the worst bullshit we encountered in the system. Which was good because, as my mother pointed out, my parents were never educated in how to deal with an autistic teen with a seemingly sudden explosion of neurologic and psychiatric problems. And he decreased my meds when possible.