Tag Archives: Behavior

Issues Surrounding Psychiatric Medication

Yesterday, Lydia of On The Borderline wrote an interesting piece on the stigma surrounding psychiatric medications and opioids for chronic pain. Today, I am going to add my own two cents to the conversation on meds.

Like Lydia says, many people, including patients, fear that psychiatric medications will change the person taking them, turning them into a zombie. I must say there is some truth to this. However, it’s hard to tell whether the medication is at fault or it’s the person’s illness. For example, as regular readers know, I spent a long time in a psychiatric hospital, including on a long-term care unit. Most people there have severee, treatment-resistant schizophrenia spectrum disorders. Most people who fall into this category were indeed heavily sedated and could be seen as “zombies”. However, the term “zombie” is a rather derogatory term for any human being, mentally ill or not.

When I started medication in 2007, I was indeed afraid of the antipsychotic I got prescribed turning me into a “zombie”. I was on a low dose of an atypical antipsychotic (which seem less sedative than classic antipsychotics) and it didn’t sedate me that much. It did keep me somewhat calmer than I was without medication, though I still felt pretty much as miserable.

This brings me to another issue that I touched upon in my comment on Lydia’s post: medications aren’t there for behavioral management. Okay, that may not be entirely true, in that severely aggressive people may benefit from medication for behavioral management if nothing else works. However, it’s a last resort and care must be taken to assess whether the patient actually feels better or they’re just too drugged up to make their feelings known. In this sense I, being a former long-term psychiatric hospital patient given medication for behavior control, have a different perspective to Lydia. She, after all, seemed to assume in her post that it’s stigma that keeps people from taking medications that could make them feel better.

Not that this didn’t happen in my own case, but in a different respect. I was taught in my years in inpatient psychiatric treatment, that medication is pure behavior control and how I felt didn’t matter. This not only got me to take medications I feel I didn’t need, but it also kept me from getting medications I did need. This is the case with my antidepressant. I was finally diagnosed with recurrent, moderate major depression in 2017 when I sought a second opinion on my diagnosis. I’ve probably been suffering depression off and on since at least age ten, but it was masked by my challenging behavior. Because I with good reason didn’t expect anyone to care about my mood if it wans’t bothering the staff, I was never treated for depression while in the hospital. Finally, earlier this year, I got a psychiatrist’s appointment to discuss my mood and was prescribed a higher dose of my antidepressant. (I had already been put on an antidepressant several years earlier, but don’t ask me why.) It seems to be working now.

Update on Day Activities

I have not written a diary-style entry in a while, even though I hoped it’d help me write more often. The past few weeks have been rather eventful with things needing to be worked out for my day activities. Not that anything concrete has come out of it yet, but today, I am hopeful that something will.

In early February, we had a “big meeting” to discuss how to proceed now that my day activities hours were cut and I would maybe have to leave this day center. It was decided that we’d involve the Center for Consultation and Expertise (CCE) to help us detail my support needs. In the meantime, my home support hours were doubled as to give my support coordinator some time to help me find a new place.

My CPN took it upon herself to call the CCE. I don’t know how the conversation between her and the CCE person went, but they concluded eventually that my problem was mainly my blindness. I didn’t understand why, since I’d been almost kicked out of day activities for self-injurious behaviors and meltdowns – not your average blind person’s everyday behavior. The whole thing frustrated me to no end, as blindness agencies have consistently said that my main problem is definitely not my blindness and now the CCE was referring me back to them.

When I read my CPN’s notes on the meeting in which she told me about her conversation with the CCE, I got an idea where the misunderstanding had come from. She wrote about my anxiey regarding demands in light of my having to learn new skills. I figured she’d told the CCE person about the recommendation that I get independent living skills training, which is not the CCE’s department. They offer consultations in situations where the client falls through the cracks because of severe problem behavior, after all. Resistance to demands does not necessarily present with severe problem behavior, I suppose.

When I asked my CPN for clarification though last week, I found out that she doesn’t even believe I have severe problem behaviors. I’m not 100% sure either that my behaviors are severe enough for the CCE, but my CPN’s reasoning for dismissing my problem behaviors altogether was rather strange: I wouldn’t be able to be married if I had problem behaviors. She also mentioned that I wouldn’t be able to live independently in that case either, which I understand. Then again, with today’s budget cuts to mental health and long-term care, once living in the community, you’d need to be virtually dead to be admitted back to an institution. Maybe a virtually dead person is the kind of case the CCE usually works on too, and in all fairness, I’m not dead.

I was badly triggered by my CPN’s comments. What mostly triggered me was her saying that I had “escaped” an institution. I hadn’t. I had been kicked out.

Later last week, my support coordinator talked to my CPN about her feeling that we should at least try to get the CCE involved based on my full story. We worked on the application this afternoon, but didn’t finish it yet, as I was getting overwhelmed.

As for finding me a new place for day activities, we currently have two organizations we’re still in contact with. Both are organizations serving primarily intellectually disabled people. Neither has offered me an orientation meeting yet, but at least neither has rejected me yet. Two other organizations did reject me and several others, we are still thinking on contacting but are most likely unsuitable.

Ten Things You May Not Know About My Disability Experience #SEND30DayChallenge

Today I discovered the #SEND30DayChallenge, a 30-day special needs and disabilities blogging challenge. I have participated in way too many 30-day challenges and there’s not one I’ve finished. However, they’re usually just meant to inspire people to write about certain topics. Most people I know don’t follow these challenges over 30 consecutive days.

The first topic in the #SEND30DayChallenge is “the meaning beheind your blog name”. I have a pretty self-explanatory blog name, so I’m not writing about this. Instead, I’m going with the day 2 topic, which is “10 things you don’t know about ___”. Here are ten things you may not know about my disability expierence.

1. I am multiply-disabled. One common myth about multiple disabilities is that the term should refer only to those with an intellectual disability combined with a mobility impairment. I do have a slight mobility impairment, but I don’t have an intellectual disability. However, I am multiply-disabled nonetheless. I am, after all, blind and autistic and mentally ill and have some other difficulties.

2. I struggle with seemingly easy things while I find seemingly diffcult things easy. For example, I can work a computer but not put peeanut butter n a slice of bread. Similarly, due to the variability in my energy level, executive functioning and mental health, I can do some things one day but not the next.

3. You cannot always tell why I have a certain difficulty. Neither can I. This is hard, because people often want to categorize and label things that are out of the ordinary.

4. I have difficulty with communication sometimes. I don’t just mean non-verbal communication, which would seem logical because I’m blind. I mean speech too. I am usually verbal, but lose my ability to speak coherently (or sometimes at all) under stress.

5. I have serious sensory issues. For instance, I find certain sounds incredibly overwhelming. I also seem to have sensory discrimination issues, like with understanding speech in a crowded environment. The worst bit about my sensory issues is that I don’t always notice which is bothering me. For example, I may be hungry but not notice it because there’s a radio in the background that catches my attention.

6. I have slight motor skills deficits. Whether these are diagnosable as anything, I do not know. People on social media often urge me to seek a diagnosis, as my parents either weren’t given a diagnosis or don’t care. However, I find this incredibly stressful and difficult.

Just today, I considered buying myself a white walking stick. They’re sold at assistive equipment stores for the blind. I after all usually use my white cane more as a walking stick and the white walking stick would still signal people to my blindness. However, as much as I seem comfortable invading Internet spaces for mobility-impaired people, I don’t feel so comfortable getting assistive devices for this reason.

7. I am blind, but I still can see a tiny bit. I have light perception only according to eye tests. This’d ordinarily mean I’m functionally totally blind and I usualy say I am. However, I can see such things as where windows or open doors are located. This sometimes confuses people, but in reality, most people who say they’re blind have a tiny bit of vision.

8. I exhibit challenging behavior. This is not willful misbehavior. Rather, it is a response to overload or frustration. I am learning better coping skills.

9. I am more than my disabilities. I have summed up most of my recognized challenges in the above points, but like every human being, I have my strengths and weaknesses.

10. I don’t have special needs. I just have needs. I mean no offense to the special needs parenting community, as I know they don’t mean to offend me. My point however is that, if we see the needs of disabled people as somehow more “special” than those ordinary needs that non-disabled people have, we may forget that not all our needs are explainable by disabilities and we don’t need to have a recognized disablity to justify our needs. We’re all human, after all.

You Baby Me Mummy
Spectrum Sunday

The Other Kind of “Pushy Parents”: My “Mind-Blowingly High” IQ and My Need for a Disability Label

I originally intended to write a post on my experience of the other kind of “pushy parents” when the “Hooked on Labels” report first came out. However, I felt somewhat kept from disclosing my parents’ take on what might or night not be wrong with me, because after all I’m still in the assessment process. A rather hurtful comment by my father last Friday made me want to write about this anyway.

By the other kind of “pushy parents”, I mean parents who deny their child a disability label or services for special needs children when the child needs this. Of course, I do have a disability label – I am blind -, and of course, I did go to special ed. It was clear to my special ed teachers and professionals that I had social, emotional and behavioral problems, among other issues, for which I needed help. Most of them however denied my high IQ. As a result, my parents fought for years to get this recognized and to get me an academically challenging education. They eventually won, only to have me go back into the care system after six years of mainstream secondary school.

My parents are incredibly disappointed in me. My father last Friday even went so far as to say that, in a contrived kind of way, I alwasy manage to end up in institutions. Somehow, with my mind-blowingly high IQ, I manage to always manipulate professionals into providing me support I don’t need.

Never mind that my IQ isn’t as mind-blowingly high as my parents would like to believe. My verbal IQ was once measured at 154. This is within the highly (not exceptionally) gifted range. This IQ score was measured exactly once. Other times, I scored much lower, usually around 130. My performance IQ can’t be measured on the Wechsler scales, because I am blind. There is a non-verbal intelligence test for visually impaired children (unfortunately there’s no adult version). I got it administered when I was eleven, but had so much trouble and was so easily frustrated that the ed psych couldn’t finish the test. Of course, my parents likely reasoned that this wasn’t due to poorer non-verbal skills but due to my refusing to do tactile assignments because I didn’t accept my blindness.

And of course, there is no reason for that low frustration tolerance and all the social, emotional and behavioral challenges I’ve ever had, except for my refusing to accept my blindness. My parents say I didn’t have behavioral challenges at all until I transferred to the school for the visually impaired. Makes me wonder why I had to transition at all, since it wasn’t because I had to learn Braille. After all, I transferred in the middle of Kindergarten and didn’t start Braille lessons till second grade.

However, even if I didn’t have obvious behavioral problems – ie. aggression or self-harm – as a young child, I definitely did show signs of social and emotional weaknesses and sensory issues. I was intrigued by strings of information, had trouble relating to other children and had stims and sensory aversions. These may not be problems a parent pays attention to when 1. the child has low vision and 2. the parent believes the child is mind-blowingly intelligent.

I understand some peculiarities in a child can be cute. I remember, for instane, my father bringing me the home supermarket’s peanut butter in the hospital because I wouldn’t eat the hospital’s brand. I was about five then. I remember my mother searching every clothes venue in town because I would only wear seamless socks. My parents were proud that, at age two, I had memorized the underground stops. My parents didn’t mind that, at the same age, I made this crawling-in-one-place movement in bed. They were surprised when I still did it at eight, frustrated when I still did it at twelve and outright angry when I still did it at eighteen. (For those who wonder, I stopped this behavior when I went to independence training at age nineteen.) All of these are potential signs of autism or similar disabilities. I wouldn’t have minded my parents denying that these are potential signs of a disability if they’d always accepted me for them. But they didn’t. Instead, they grew increasingly angry with me for my idiosycrasies. In fact, my self-discovery process relating to autism started with my father using “autistic” as an insult. He should be lucky that I cared to google the DSM criteria before self-identfying with a disorder that he’d insulted me with, or I’d have far more self-diagnoses than I ever had.

And here I am at age thirty, nearly fifteen years into my discovery process with regards to autism. Suddenly, somehow, the behavior that my parents found cute when I was two but were desperate for me to change when was eighteen, is no longer a problem. My mind-blowingly high IQ is, because I use it to con people into believing I deserve a disability label and services that I don’t need.

One last point. Suppose I do really have as mind-blowingly high an IQ as my father claims I do. So does he. Suppose I could use that mind-blowingly high IQ to manipuulate every single professional around me. So could he. So who out of us is the one who is being manipulative? Think on this.

Spectrum Sunday
Hooked on Labels - responses & other relevant posts linky

Pathological Demand Avoidance (PDA) Awareness Day: My Life with Possible PDA Traits

Today, May 15, is pathological demand avoidance syndrome (PDA) awarness day. Pathological demand avoidance is a subtype of autism characterized by extreme anxiety, a need to resist everyday demands and a need to be in control. Core features include:


  • Passive early history in the first year, avoiding ordinary demands and missing milestones.

  • Continuing to avoid demands, panic attacks if demands are escalated.

  • Surface sociability, but apparent lack of sense of social identity.

  • Lability of mood and impulsivity.

  • Comfortable in role play and pretending

  • Language delay, seemingly the result of passivity.

  • Obsessive behavior.

  • Neurological signs similar to those seen in autism.

When I first wrote about PDA, I wasn’t so sure I believed in its existence. I recognized and still recognize many features, but the condition isn’t recognized in the Netherlands, so I can never be sure whether I have it. Also, I doubted whether my behavior may be a normal reaction to being in an institutional environment for too long. However, when I read stories from adults with PDA or parents of children with PDA, I recognize a lot. I am going to write about this now.

Pathological demand avoidnance is an autism spectrum disorder that shares traits with oppositional defiant disorder and reactive attachment disorder. However, children with PDA are not willfully naughty. The only rule I routinely broke was the one about not stealing candy. Then again, doesn’t every child do that?

I was a quiet child. However, i could show aggression seemingly out of nowhere. I acted out particularly when my parents or sister wouldn’t do as I said. For example, even as a teen I had no clue when it was not appropriate to demand my parents do something for me and I’d get upset if they refused.

I was an early talker and quite sociable as a young child. For example, I’d shout “Hi!” at everyone we met in the streets. This is expected in the tiny village my husband and I live in now, but it is definitely abnormal in Rotterdam, where I lived as a child. I was comfortable – perhaps too comfortable – in social interactions with strangers. As I grew older, this got worse. This is what got me thinking I might have attachment issues.

I was very comfortalbe in pretend play, but on my own terms. Autistic children don’t tend to engage in pretend play with other children, but I did. I however dominated the play situation. I was always the one who thought out the scernarios we were going to play. I also made the rules of what was “proper” pretend play. For instance, my sister could not say “My doll said ___”, because after all she was acting out her doll.

Most of my life, I’ve been able to hold down a conversation, again as long as it’d go on my own terms. I tend to dominate conversations and make them about topics I want to discuss. When this happened at my diagnostic assessment, my parents said I wanted to make conversation about me all the time. This isn’t necessarily the case. For instance, yesterday a Christian nurse and a patient with his own set of religious beliefs were discussing religion. It wasn’t about me at all and I didn’t make it about me, but as soon as i jumped in, I tried to control the conversation.

The core feature that got me thinking about PDA as applying to me, is however my resistance to ordinary demands. This may be an oppositional behavior too, but in PDA, the need to resist demands is not out of defiance. It seems to be more a core need stemming sometiems from anxiety and sometimes from sensory issues. For example, children and adults with PDA might refuse to brush their teeth when asked, but this is commonly out of sensory defensiveness. They may refuse to do household chores out of anxiety. Interestingly, they may do certain tasks that create anxiety in them when they’re asked to do them by others, when they are on their own. I can do household chores much more easily when I am the one in control or when I’m on my own than when it’s someone else demanding I do them.

Children and adults with PDA are often described as Jekyll and Hyde. They can act perfectly normal as long as they’re in control and their anxiety isn’t provoked. However, when people make demands of them or situations or people don’t follow their rules, they have rapid mood swings. I definitely relate to this and often wonder whether it’s my autism or a borderline personality disorder trait.

B – #AtoZChallenge on Mental Health

Welcome to my letter B post in the #AtoZChallenge on mental health. This is a much harder letter than A was, but I still found some interesting terms in mental health starting with the letter B.

Behavior

Behavior is defined on Wikipedia as “the range of actions or mannerisms by individuals in conjunciton with themselves or their enviornment”. Well, it does not include just individuals, but also animals, artificial entities, etc., but the full definition is way too complex to go into here. The bottom line is that behavior includes all actions a person (or animal, artificial entity, etc.) conducts in interaction with themselves or their environment. Everyone exhibits behavior, sometimes not even consciously.

In mental health care, however, “behavior” has a different meaning. It refers not to everything a person does, but to specific actions that are supposed to say something about their mental health. “Behavior” then becomes a sign of mental illness. Worse yet, when a mental nurse says something is “behavioral”, they usually mean it’s willful. “That’s behavior”, is a mental nurse-ism for “you are willfully acting inappropriately”.

Biomedical Model

This is the model which sees illness as a direct result of dysfunction in the body. The biomedical model, when applied to mental illness, sees mental illness as purely a chemical imbalance or a brain disease. Proponents of the biomedical model use only medications or other biological interventions (eg. brain surgery) to treat mental illness. There are hardly any doctors who subscribe exclusively to the biomedical model, especially in mental illness.

Bipolar Disorder

Also known as manic-depressive disorder, this disorder is characterized by alternating episodes of major depression and mania. Mania is a state of elation where a person is overly active, reckless and impulsive and/or irritable. Some people in a manic phase spend thousnads of dollars they don’t have on things they don’t need. Bipolar disorder is not about mood swings. Rather, the depressive or manic phases last for at least a week for mania and two weeks for depression, often longer. Some people in manic states experience psychosis too. Then we get the well-known delusion of gandeur. Please note that being convinced you are Napoleon does not make you bipolar per se. Bipolar mania, as I said, also includes increased activity, impulsivity and irritability.

Borderline Personality Disorder

I have this diagnosis and it’s really one of the most misunderstood mental illnesses by mental health professionals. The lay perception (and perception by some professionals) of BPD is one of a woman who threatens suicide when a friend doesn’t answer the phone within five seconds. She has one boyfriend after another, with whom she picks fights then five minutes later makes love. She doesn’t show up for therapy appointments, but demands her therapist make time for her whenever she does show up, then when they refuse she runs in front of a slow-moving car saying she’s going to kill herself. That last one was a true example from my psychology textbook, seirously.

Surprise: this is not what BPD is like in most cases. Firstly, BPD occurs almost as often in men as in women but is underdiagnosed in men and overdiagnosed in women. Secondly, BPD is characterized by emotion regulation difficulties, which means a person’s emotions can shift rapidly. People with BPD often do engage in self-injurious or suicidal behavior. They also have an intense fear of abandonment, which leads some to fall in and out of love very rapidly. Borderlines do outwardly look like they are manipulative bitches sometimes, but inwardly, they suffer tremendously from their rapidly shifting emotions. They do not demand excessive attention per se (like people with histrionic personality disorder do) Learn more about what it’s like to suffer from BPD.

On long-term mental units, you don’t see many people with BPD, because standards of care dictate they can only be admitted very briefly for crisis intervention. Us borderlines are supposed to get dependent otherwise. Well, I can tell you, I know people with other diagnoses who are much more dependent than I am.

How Far I’ve Come on My Mental Health Journey #Write31Days

31 Days of Mental Health

Welcome to day 4 in the #Write31Days challenge. Sorry for being a bit late to publish my post. Today, I’m sharing a personal post, describing how far I’ve come on my journey of learning to cope with mental illness.

I sought mental health help for the first time in early 2007. I was severely behaviorally disturbed at the time, having aggressive meltdowns several times a week. Though I didn’t physially attack other people, I was quite verbally aggressive and threw objects a lot. This behavior lessened with some counseling from a community psychiatric nurse and eventually medication, but it didn’t completely disappear.

When I was admitted to the psychiatric unit on NOvember 3, 2007, I was seriously suicidal. I had spiraled down into a crisis while living independently. I at the time showed classic borderline behavior, making suicidal threats when I was seriously distressed. I no longer threw objects as much as I’d done before, but I was still verbally aggressive.

After about three months on the locked unit, my disturbed behavior became less severe, but I still had many milder meltdowns. I’d also display rigid behavior. For example, I had a crisis prevention plan and i’d tell the nurses when they weren’t following it. Now the staff at that unit were quite authoritarian, so I was threatened with seclusion for telling staff they weren’t following the rules. I don’t see this as disturbed behavior on my part now, but I do see how, in the insane place of a psychiatric hospital, it was.

My meltdowns and outbursts didn’t lessen in frequency till I went back on medication in early 2010. It also helped that I’d transferred to the less restrictive resocialization unit. I eventually was quite stable there on a moderate dose of an antipsychotic and a low dose of an antidepressant. I still had my moments where I’d act out, but they were manageable.

This changed when I transferred to my current long-term unit in 2013. I transferred in the summer, so there were often fewer staff available. I also couldn’t cope with the fact that my part of the unit was often left to our own resources when the staff were catering to the needs of the presumably less independent people on the other floor. I started eloping regularly, something I’d previously done sometimes but not nearly as often as I did now. At one point, it eventually led to the staff considering having me transferred to the locked unit. That fortunately never happened. Instead, my antipsychotic was increased to eventually the highest dose. I have been relatively stable for about nine months now.

What helped me along this way was a building of mutual trust and cooperation. An example was that the staff would often offer to allow me into the comfort room when distressed. At the resocialization unit, when I’d have severe meltdowns, I’d be transferred to the locked unit and made to sit in their comfort room. Their comfort room was really a reconstructed seclusion area and there was little comfort to be found. Consequently, I saw the comfort room as punishment, but on my current unit, it isn’t. We have a really good comfort room which is truly calming. I learned to realize that the offer to have me sit in there was an offer for help, not punishment.

Eight years into my mental institutionalization, I still cannot say I have fully overcome my destructive ways. They have significantly lessened, but I still have my moments. That probably won’t be over with for a long while.

What Sensory Overload Is Like

Today on The Mighty, there’s a story about people’s misguided perceptions of sensory overload. Mandy Farmer, the post author, describes several situations involving her son that are well-known to me. Though I’ve come to tolerate a grocery store, I still cover my ears when the music in a store is too loud. I still fidget and, though I don’t (usually) scream, I still react with frustration at my hair being cut. I still don’t attend many social events, because I find a baby’s crying or loud music or even lots of conversation overwhelming.

Overwhelming, exactly. But you see just behavior. I’ve actually had some nurses tell me that “this is behavior”. Duh! Every single action a person exhibits is behavior. You mean it is willful misbehavior, but 1. you don’t say so (this is my literal-mindedness acting up) and 2. I don’t think that it is.

People often see sensory overload as attention-seeking, as depriving the noise-making people of the right to make noise. *Yes, I’ve seriously been accused of that!) At best, like Farmer also seems to connote, they see it as anxiety, and anxiety is to be overcome with exposure.

I once, many years ago, read a description of what it is like to live with autism. The description of the sensory experience went something like this: imagine noise at the highest volume blasting in your ears, insects crawling under your skin, and bright lights shining in your eyes at the same time, while you’re having to eat the hottest type of peppers and the smell of rotten meat penetrates your skin. I bet those last two weren’t in there, but sensory overload affects all five senses. Now imagine not being able to escape any of these sensory experiences. Imagine what it’d be like having this experience 24/7. You’d go freakin’ nuts!

Sensory overload doesn’t always involve a cognitive appraisal of the sensory stimulation, like: “I don’t think people should be playing loud music.” It doesn’t even always involve fear-related appraisals, like: “This noise is a threat, I feel like it will damage my ears.” When it does involve these types of cognitive processes, we aren’t always aware of them. Older children and adults can learn to become aware of what is going on in their minds and register any fearful or angry thoughts they may have towards the sensory stimulus. Then they can begin to learn to adjust these thoughts. But when there are no such thoughts, or when the person is unaware of them, how will attributing their reactions to some type of willful behavior help them?

If noise were blasting at the loudest volume, bright lights were shining into your eyes, insects were crawling under your skin, etc., wouldn’t you feel pain? You would! Think of sensory overload as pain. And while cognitive and behavioral strategies can help people manage pain, attributing their pain-related behaviors to willfulness is not only insensitive, but ineffective as well.

Everyday Gyaan

Supporting Someone Who Self-Injures

I have a diagnosis of borderline personality disorder (known in the UK as emotionally unstable personality disorder). BPD is sometimes known in the Netherlands as emotion regulation disorder, because it causes people to be unable to deal with intense and rapidly shifting emotions. BPD sufferers get stressed much more easily than those without mental health problems. They also tend to cope with stress ineffectively. One destructive coping mechanism that is common in BPD is self-harm.

Self-injury is not unique to people with BPD. In fact, starting with DSM-5, non-suicidal self-injury is its own diagnosis in the psychiatrist’s manual. Before then, if a person self-harmed, they were often incorrectly diagnosed with BPD, which has many more symptoms than just self-injury.

Self-injury is also common in people with autism, which is my other diagnosis. It is thought that people with autism, particularly those with a co-occurring intellectual disability, self-harm as a way of self-stimulatory behavior (to regulate sensory input) or as a way to communicate. For example, they might start to self-harm when they are overloaded sensorially or cognitively, or when they are in pain.

People with BPD are thought to self-harem to regulate their emotions. For instance, they may feel intense hopelessness or rage, or they may conversely feel numb and self-harm to have any sensation at all.

Self-harm is commonly thought of as a way of manipulating or attracting attention. This may be true, but isn’t necessairly. Many people feel a lot of shame about their self-harm. I, for one, don’t tend to self-injure to garner attention of others. I self-harm for many reasons, one of them being expressing emoitons to myself.

It is important to realize that people who self-injure, no matter their diagnosis, are in distress, be it physical, sensory, cognitive or emotional. It is important to find out what precedes the self-injury and what follows it. Don’t make judgments about what goes on inside the self-injurer’s mind. For example, I commonly start self-harming when I get frustrated trying to communicate my needs to my staff. It may then be easy to assume I do it “for attention”, because the staff give me more one-on-one attention when I self-injure. However, if I am able to communicate my needs effectively, I don’t self-injure to get attention. Behvior is communication, but bad behavior is not always intended to be malicious.

There are different ways of supporting self-injurers. Prevention is the first step. Some people, particularly those with emotion regulation disorders, may benefit from mindfulness and other skills training in a form such as dialectical behavior therapy. Others may benefit from augmentative or alternative communication methods to signal they’re in pain or overloaded. I need a little of both. I practise emotion regulation skills and mindfulness, but sometimes I also need support in the area of communication. For example, I cannot always communicate when I need a staff member to help me with something, be it emotional support or a practical task. Signaling cards, gestures or other alternative or augmentative communication may help in this situation.

When someone self-harms, it is of course important that their physical wounds be taken care of if they cannot do this themself. I find it helps most when someone doesn’t make a big deal out of my self-injuring when taking care of my wounds. Some professionals advocate limiting contact for a day or more after a person has self-injured, reasoning that in that case they have solved their problem already, albeit in a destructive way. Though I find that a bit of distance is good shortly after I self-harm, it is still important to make sure the person is safe from further harm. I do also find that I want to discuss the situation later when I’m calm, so that I can learn what better strategies will help me in the future.

Everyday Gyaan