Creating a Sensory Diet: Lessons from Autism

After my recent post about similarities between ASD and BPD (so many acronyms), I’ve started to wonder about the usefulness of making these comparisons. Sure, it’s interesting to speculate and helpful to see the ways that people are similar, as well as understand where diagnoses can go wrong, but as a total layperson my contributions might have to be a little smaller than all that.

So here’s what I’m going to do for myself, as well as some suggestions for how other folks can learn from the parallels between borderline and autism.

I am a highly sensitive person. I don’t mean emotionally, although that’s also true, but I’m talking about physical senses. I love roller coasters, climbing, and other moving fast/adrenaline style adventures. I’m highly light sensitive and averse. I have lots of issues with textures (this is why I don’t eat tofu). Most perfumes and scents make me sneeze. I hardly have it as bad as some people, but I’m definitely on the “strong senses” end of the spectrum.

It’s extremely common for kids on the spectrum to have sensory difficulties, whether extreme sensitivity or under sensitivity or a mix of the two in various senses. And since it’s so common for those with autism, one of the more common elements of treatment is a sensory diet, or another way to help a kid or adult regulate and organize their sensory experience.

So what I’m going to try to do for myself is create a sensory diet. Once again, I’m finding that the curb cut effect is in full force. Sensory diets are probably great for just about anyone who finds that they’re not getting sensory needs met. I’m not diagnosable, but I definitely need more movement, tactile input, and help with my internal regulation (hunger, temp). After looking at some of the resources for folks with autism, I found a starting list that sounds like it will be helpful to me:

-emotion cards

-notebook and pen

-fidgets

-fuzzy socks

-candles

-be a burrito

-climbing/monkey bars/proprioception

-hammock or rocking chair

-be upside down

-piano

-go outside: water sounds

-exercise

-swimming!

That’s just for a start, but you get the idea. The bonus? I’m also using these sensory regulation tools for self soothing when my anxiety starts to go off the rails. I find it incredibly helpful to focus on very concrete, very basic things like the senses when I’m trying to combat anxiety. I can argue with just about anything else, but sensory input gets to the heart of the matter. So instead of making a self soothing box with affirmations or art work, which has never felt useful to me, I’m creating a sensory box with soft things and fidget and reminders of how to move my body effectively.

 As a side note, I would like to invite anyone with autism to let me know if this is appropriative at all, but my understanding of neurodiversity and its tenets is that stimming/sensory needs/other things autistics speak out about are often needed by lots of people, and the more we can integrate them into society at large the better.

On the flip side, I also think there are elements of the most common BPD therapy, DBT, that could be incredibly helpful to those who struggle to communicate or identify feelings, those who don’t find socializing super easy, or those who aren’t great at self soothing. DBT gives strategies like concrete and easy steps to set a boundary, and encourages patients to identify their values and needs. It suggests that people think about how physically different emotions feel to them so that they can use the physical reactions of their body to identify and communicate an emotion when it’s happening. It suggest methods to combat black and white thinking, like making pro and con lists, or writing out/reviewing facts about what is happening. While some of these things might require adaptation for people with autism, they could enrich that therapeutic experience.

Of course it makes sense for treatments to be individualized based on the diagnosis present, but I always wonder why there isn’t more cross pollination between diagnoses. Some of the techniques used for feeding therapies could be useful for eating disorders, DBT is useful for bipolar and eating disorders, autism treatments might be helpful for lots of people who feel quickly overwhelmed. I would love to see more communication between communities within the larger mental illness umbrella.

What It’s Like: Borderline Personality Disorder

I just recently read a post by Ozy Frantz about what it is like for them to have BPD. I also have a BPD diagnosis (although I have BPD traits rather than a full diagnosis of the personality disorder. For more info on the difference see here), but it got me thinking that I don’t very often talk about the overall experience of what my different diagnoses mean for me. I have a big ol’ mix (EDNOS, major depressive disorder, generalized anxiety disorder, and BPD), but there are definitely different strands that I can pull out that seem to correspond to each.I was also surprised to find how good it felt to simply read another person’s general description of their symptoms.

So in the next few days I’m going to be spending some time in my own head (big surprise I know), talking about what it’s like to experience these different mental illnesses. Disclaimer: I can’t speak for everyone. My experience of each will be determined by all sorts of things, not least the fact that I have quite a few comorbid disorders. But I do want to make a space to talk about the overall experiences rather than particular issues that have set me off on a day to day basis.

I’m going to start today with borderline personality disorder. One of the most common descriptions of being borderline is that it’s like living without emotional skin. People with borderline tend to be highly reactive. Let’s say everyone starts at a baseline of relatively neutral emotions. For me, any stimulus will result in my emotions spiking higher than most other people’s, and I also have a really hard time returning to base. This means strong emotions that last for an unnecessary amount of time. For many people this includes extreme anger, but I’ve developed the great coping strategy of just only ever getting angry at myself because the strength of my anger and a family history of anger problems means I’m terrified of being angry.

One of the things that’s most frustrating about BPD is that I can be entirely aware that I tend to overreact and still have extreme emotions, which leaves me struggling to figure out where reasonable is.

Another classic symptom of BPD is self harm, which I’ve been free from for almost four months (woohoo!). Typically I use it to regulate either extreme emotions or extreme dissociation. Speaking of dissociation, welcome to another fun part of having BPD. Dissociating is essentially letting your brain leave your body or feeling like you’re not inhabiting your body. Most people do it on a really low scale in the form of daydreaming, but in extreme forms people can forget what they’ve done for hours at a time. I tend to simply shut down when things get overwhelming. I fall asleep, I can’t move my body, I just turn it all off. It’s scary, since I’m never entirely in control of it, and it often feels like being trapped just outside of my head without any way to get back or influence the world around me.

People with borderline also tend to have two problems that are really tied together: difficulty holding together a self identity and an intense fear of abandonment (also found in the form of either deifying or demonizing people they’re in relationships with). I have always had trouble with knowing who I am, and I have this suspicion that I forget that I really exist when there’s not someone looking at me or talking to me or reminding me what I am. This might be why I write so much because it’s solid evidence of who I am and what I think. But I really define myself through my relationships and through the perceptions that others have of me. Again, this goes back to the idea that I can’t figure out what “average” or “normal” or “reasonable” is, so I don’t know if I’m particularly smart or particularly clumsy until someone else tells me what normal is and how I fit in. Similarly to cutting anger out (unless it’s directed at me), I also tend to take all of the negative feelings I have towards people and turn them towards myself instead, so I very rarely switch from deifying to demonizing and instead just make lots of excuses for bad behavior.

Like a lot of other borderline people, this means I can be somewhat manipulative. I’m highly, highly aware of it at this point and can see myself coming up with useless little tests (did that person text me first? If I don’t tell them I’m upset are they paying enough attention to tell? Do they care enough about me to demand that I take care of myself when I’m resisting?), so I’ve started to combat it by being as ridiculously open as possible with people I’m in close relationships with and calling myself out. Hopefully this is some evidence that a diagnosis of BPD does not condemn one to a life of being a manipulative asshole, as there are some evidence based skills to help out.

Last but not least, I also feel really empty a lot of the time. Possibly because I have a hard time knowing what appropriate goals are, or because I think everyone actually hates me and is going to leave me, or because I really just don’t know who I am (and for a lot of silly philosophical existential reasons about whether there’s a point to being alive), I feel very hopeless and I’m often overwhelmed with a kind of despair. This might also just be depression, but there is a certain flavor that I think is borderline and that tends to come with being bored. It’s a feeling of terror that nothing will ever change, that my mind won’t stop treating me like crap, that there’s just too many feelings and thoughts in me to just exist. I’m really, really bad at being bored, and I start to get very self-harmy and very twitchy and very desperate to do something worthwhile the moment I get bored.

I’d love to hear in comments from anyone else about their experiences with BPD. Do these things ring true for you? What’s different?

Mental Illness Isn’t Your Scapegoat

Let’s get the obvious out of the way: abusive relationships are horrible. We should do everything we can to provide people with information on what an abusive relationship looks like, how to get out of one, and how to stand up for yourself and your boundaries, as well as support for those who are trying to escape an abusive relationship.

There are many good resources out there on how to recognize unhealthy behaviors. There’s also lots of people out there doing work specifically with women and girls to remind us that we don’t deserve abusive relationships.

What is not a good response to abusive behavior is blaming mental illness. I can’t believe I have to say this, but it is 100% possible to have a mental illness, really any mental illness, and not be abusive. This includes individuals with Borderline Personality Disorder, Narcissistic Personality Disorder, and Antisocial Personality Disorder. Pointing towards abusive behaviors as intrinsically linked to any of these disorders is not backed up by facts (there are many abusers who use all of these same tactics and do not have any mental illness), and throws the rest of the individuals with mental illness under the bus in order to advocate for abuse victims.

This article at Self Care Haven has some great information about techniques that many abusers will use. Unfortunately, it couches it entirely in language of “narcissists” and how those individuals behave, rather than recognizing that any abusive individual can make use of these tactics (and many do), and recognizing that a diagnosis of Narcissistic Personality Disorder is not a life sentence to being an abusive person who cannot have real relationships.

Abuse is a pattern of behaviors and interactions. It is not a personality. We don’t get to simply label any behavior we deem bad as “mental illness” in order to ignore how we as a society have contributed to it or in order to brush off any support we could provide for someone to change. I am all for speaking openly about mental illness and the challenges it can present in relationships and everyday life, as this is the best way to improve treatment and diagnosis of mental illness, but more often than not we use the label of “mental illness” to close a conversation about a difficult or painful topic.

Gun violence? They were mentally ill. Start a registry.

Domestic abuse? Mentally ill. Don’t date people with personality disorders.

Do you just disagree with someone? They’re probably mentally ill too.

Here’s the truth: even the personality disorders that make it most difficult to hold down relationships are not a life sentence. Borderline Personality Disorder, which has long been seen as the land of the manipulative and angry, has an evidence based treatment that has high success rates. Many people with BPD have totally functional lives with families, jobs, and everything else a healthy human being might want (ok, maybe not everything, but they lead fairly boring lives for the most part).

There are absolutely highly functioning individuals with Narcissistic Personality Disorder, or Antisocial Personality Disorder. There’s evidence that Cognitive Behavior Therapy can reduce symptoms and increase functioning, allowing patients to form better and healthier relationships. More study is definitely needed, but instead of broadly labeling personality disorders (especially ones that already come with a lack of empathy and distrust of others) as breeding grounds for abusers, perhaps we could put some effort into finding treatment for people who have these disorders.

None of this is to say that people who have mental illnesses should be excused of abusive behavior. But providing information about abusive behaviors and giving tools and support to victims is not mutually exclusive to providing mental health treatment options to abusers, and absolutely does not require that we assume a certain mental illness necessitates abusive behavior.

There are some parallels here to threats of suicide or self harm. If you have a mental illness, there is a possibility you will feel urges to enact these behaviors. Letting a partner or friend know that you are feeling the urges is definitely a good idea. Threatening the behaviors in order to get your partner or friend to do something is not ok and cannot be excused by mental illness. The urges are the same, the behaviors are different, and choosing the healthier route is a skill that can be learned. Similarly, the urge to use and manipulate people might be a hallmark of a personality disorder, but the urge doesn’t necessitate the behavior.

We can do better in how we talk about abuse.

Falling Through the Cracks: When the DSM Can’t Find You

This week in my DBT group, we were talking about what Borderline Personality Disorder is and how it’s diagnosed (DBT was originally formulated for BPD). Essentially, there are nine traits that are used to diagnose BPD. If your diagnosing therapist sees five or more of them in you, then you are diagnosed with BPD. If you have less than five, but still have some, you are diagnosed with what’s called BPD Traits. I had never heard of BPD Traits before, and I don’t think most people have. Insurance is far less likely to cover something that sounds subclinical like that, and it’s far less likely to be understood by the general public. It simply sounds less severe, right?

 

Unfortunately, this system has a few major flaws, and it seems to me that these flaws are indicative of many of the problems with the DSM as a diagnostic manual. The main problem with this system of diagnosis is that many of the traits of BPD are things that everyone has to some extent or another (things like anger issue, or efforts to keep people from leaving you), and so they only become diagnosable when they seem to be excessive or problematic. This leaves a great deal up to the discretion of the diagnosing therapist. It also means that that therapist has to draw a hard line about what counts as problematic and what doesn’t, when in reality these traits exist on a spectrum. So you could be just over the line and counted as having the trait, or you could be so far over the line you can barely function on a day to day basis, and in the eyes of the diagnosis, you have the same trait.

 

This also means that the difference between BPD and BPD traits isn’t as clear cut as it might seem in the first place. For example, someone with BPD might be just over the line on five traits, but someone with BPD traits might be way, way over the line in four. Who’s to say which is more severe, or that one should receive a full diagnosis that allows them access to treatment, while the other receives a diagnosis that gets them almost nothing?

 

Overall, this illustrates something that is definitely wrong with the DSM: mental illness and mental traits all exist on spectrums. There is no on or off switch to depression, anxiety, paranoia, or any other problem that may be diagnosed as a mental illness (with the possible exception of hallucinations). However in order to diagnose someone (and particularly for that individual to gain coverage of treatment), symptoms are treated as present or not present. Occasionally we use modifiers like “severe” or “mild”, but more often than not it’s either there or it’s not.

 

This seems to be a recipe for disaster for people whose symptoms either don’t present as traditionally understood, who are barely subclinical, or who have an odd constellation of symptoms. I find that I often have this problem: I have lots of issues (oh LOTS and lots). I have bits of OCD, OCPD, ADD, BPD, depression, anxiety, bulimia, anorexia, and really probably a whole host of other things. But because many of them are subclinical, or I don’t have the right pairings to fit into a particular diagnosis, I have been left without any sort of personality disorder diagnosis, or larger diagnosis to fit it all together. Despite how severe my eating disorder was, I was lumped in the EDNOS category, which is far less often covered, and is often treated with less respect and as less severe than other eating disorders.

 

This is a serious problem if we want to provide proper services for those people suffering from mental health issues. We shouldn’t have to wait until a symptom is truly interfering with someone’s basic functions before we give them help. There are many problems with the DSM, and trying to posit a replacement for it is extremely difficult, but one element that really could use replacement is this all or nothing thinking. There is no “partially depressed” or “sort of ADD”. You either have it or you don’t. One improvement could be seeing mental health on a spectrum. We all have different traits, and many of those traits are spectrum style traits. Understanding that moving towards the extremes is always a problem is one great way to view mental health in a more understanding and helpful way, because it allows us to try to help everyone move towards a more balanced place, and could allow us to provide treatment for those who have not yet reached the critical zone.

 

Another issue with this system is the amount of discretion that it allows for the diagnosing clinician. Let’s look at a particular example. One of the criteria for diagnosing BPD is “inappropriate, intense anger or difficulty controlling anger”. This is fairly vague. What counts as inappropriate anger? How might things like race and gender fit into this (hint: black women will always be viewed as having inappropriate anger)? Shouldn’t there be specific examples of things that might constitute inappropriate anger, or the consequences in someone’s life for “difficulty controlling anger” or the number on an emotional scale of what constitutes “intense” anger? How often does one need to be intensely angry to get this trait? All of these things are left up to the discretion of the diagnosing clinician, and unfortunately this allows for a lot of bias.

 

There is a difficult balance here, because having that kind of specificity means that you could be very close to a diagnosis, but not quite reach the correct number of episodes, or the right “level” of anger to reach diagnosis. It seems to me that having these specific levels combined with a spectrum view of disorder would allow clinicians to have less individual discretion that can lead to variability in diagnosis, but would also allow more people to get the treatment that they need. It is widely recognized that we need some changes in the DSM, but these particular issues are ones that I have seen in action in myself and in people around me, and that seem as if they could be fixed without great difficulty. Get on that DSM.

In Defense of the Suicidal

Before I begin this post I want to say that I am all in favor of psych treatment, mental health accommodations and more care and attention given to those who appear to be in a bad place. ABSOLUTELY 100% I ADVOCATE THESE THINGS. I want better access to care, better quality of care, and more quantity of care. ALSO: TRIGGER WARNING TRIGGER WARNING: self harm, suicide

All of that being said, this article in defense of psych treatment for attempted suicide pissed me off. I do support having resources for those who are coming out of a suicide attempt, to help them stabilize and get medication and have mental health care (of course I think all of those things should be available before the person gets to the point of suicide), but the idea that it should be mandatory and the whole tone of the piece rubbed me entirely the wrong way. Now most of this piece is going to using personal and anecdotal evidence, but I think that that was WHY the article pissed me off so much: mental illness and suicide are about very personal and internal experiences, and this article reduced it all to statistics, as if that could explain how someone with mental illness is feeling. That’s upsetting.

Most of the evidence that he uses in the post revolves around the idea that those who are suicidal are not thinking clearly and thus are not in any position to make decisions about whether or not they want life or death. Wow. WOW. Let’s try applying this argument to any situation that does not involve mentally ill individuals. Say for example someone had a heart attack. I’m guessing we would all say they’re not exactly thinking clearly at that point in time or directly afterwards. Doctors would likely stabilize the patient, and then recommend certain changes the individual should make to protect themselves from future problems. Now we may look with confusion at people who don’t implement these changes, but we don’t suggest that we should stick them in a mandatory “healthy eating and exercise” facility for a few weeks afterwards to “stabilize” their mental health and get them to a place where they’re “thinking straight”. That’s because we assume that what these individuals do with their life is up to them and if they want to put their life in jeopardy it’s their own damn business.

To look at it from an opposite perspective, say a mentally ill person was being threatened by another individual. They’re being held at gunpoint. We 100% believe that this mentally ill person has the right to choose whether to be alive or dead in this situation and that another person does not. We would NEVER EVER say “well because you’re mentally ill you’re not thinking straight, maybe you do actually want to be dead you never know”. We have a prejudice towards life. We have no idea whether being dead is better or worse than being alive, but we continually assume that if someone has a choice, they SHOULD choose life. That seems just as unfair to me as telling someone else that they should be dead. It’s nobody’s else’s concern what an individual does with their own life or death (with the exception of family members and close friends and other individuals who will be emotionally impacted, but this article was talking about legal and medical procedures to be enacted by perfect strangers).

At other points in this article, the individual states that the average person suffering from MDD has only about 4 episodes of depression in their lifetime and that these episodes last only 6 months, so the pain is temporary. They also state that with medication most people get better, and that with CBT statistics are even better. Ok, so the first statistic is an AVERAGE. There are many individuals who have situational depression and are diagnosed with depression for a single episode. This brings the average way, way down. For those people suffering from major clinical depression, it’s often an ongoing struggle. Even when you’re not in the midst of a full on episode, it still makes everyday life harder. As someone who has MDD (and who is only 22) I can vouch that I have already been through 5 episodes (probably more, that’s just a basic estimate from the last 5 years), and that each of these has been on the high end of six months. That’s almost half my life for the last 5 years. So telling me that it’s “temporary” and that I’m overreacting to a temporary problem is extremely condescending. It’s telling me that a statistic knows my life better than I do.

He also doesn’t address the fact that co-morbid diagnoses exist and complicate these issues severely. Eating disorders have the highest mortality rates of any mental illness, and they are NOT temporary, nor are they easy to solve with medication or therapy. They are often comorbid with depression, and many of those deaths come from suicide. As he mentioned, BPD is also a high cause of suicide, and this also does is not something that is “cured” but is more likely something that is “managed”. He also states that it often goes away by itself in “a few years to a decade”. A DECADE? I have BPD symptoms, and I can promise you that waiting it out for a decade is NOT an option. Making light of how difficult that is for individuals is again, extremely condescending and doesn’t bother to listen to how difficult life can be when you’re in the midst of BPD for years and years on end, in what feels like a state of unrelenting crisis. It makes perfect sense to want to be done with it.

In addition, his comments about medication seem to ignore the fact that many individuals who try to commit suicide are on medication or have been on medication and have been in therapy before or currently are in therapy. Meds don’t work for everyone and therapy doesn’t work for everyone. OBVIOUSLY we should try to give everyone the best options possible by allowing them access to therapy or meds, but if they don’t want it it’s their choice to decide that their life isn’t worth living and that those things aren’t for them. No one should be forced into doing things they don’t want to do simply because we view life as better than death and think that this will change their mind.

As someone who has been pushed into therapy and meds, life doesn’t suddenly magically get better. Your suicidal tendencies don’t suddenly disappear. You don’t suddenly gain a new appreciation for life that makes you clear of mind. And even now when I’ve been on meds for months and in therapy for years, I still don’t want them. Many people feel this way. If someone chooses to be unhappy then that is their business and if that choice leads to them desiring death, then again that is their business. Only in the case of mental illness do we feel it’s ok to tell people that they HAVE to do what we feel would make them happier. It is incredibly condescending that we are treated as children who don’t know what’s best for us because of our mental illness.

I’m not even going to touch the ageism in the first section of the post except to say that teenagers have the right to bodily autonomy too.

The final element that I want to address is the seeming underlying assertion that a 72 hour lockup doesn’t hurt anyone, and we might as well do it in case it can help. Now as someone who has been taken to the ER without my consent for mental health reasons, I can promise you that it IS NOT HARMLESS. I was not admitted, I was simply asked some questions and when I convinced them that I had no intentions of killing myself they let me on my merry way. But I had to sit and explain myself in a cold, sterile room at 2 in the morning for hours to people that I didn’t know who didn’t know my mental health history and who diagnosed me with “adjustment disorder” (which is bullshit since I told them that I have diagnosed depression and an eating disorder which is why I had been self-harming). I was terrified, I was traumatized, and I was angry. I spent a week after that having a difficult time trusting the person who called, and I proceeded to bottle up my emotions even worse than before because I was terrified of having another similar experience. It was absolutely horrible in every way. Let me reiterate: I was not even admitted. It was still humiliating, exhausting, terrifying, and traumatizing.

From the people that I know who have been in residential or in-patient treatments, they treat you like a child: they take away your possessions, they watch you nearly constantly. I have never heard about someone having a positive experience in a psych ward. I have heard about individuals being restrained against their will, not being allowed visitors, feeling bored and lonely. These things do not help an individual suffering from depression. They are extremely harmful, and suggesting that just because a psych ward is not equivalent to One Flew Over the Cuckoo’s Nest means it’s a great place is ridiculous. There IS discrimination against mentally ill individuals and it DOES take place in psych wards and mental hospitals across the country. So when we consider mandatory psych treatment for suicidal individuals we sure as hell better weigh the negatives against the positives. We have to weigh that these treatments often are traumatizing or scary or discriminatory.

To close, I am in no way advocating for suicide. I do agree that it’s a fairly permanent solution and that exploring the problem from all angles before taking any action is the most prudent route to go, and that this should involve therapy and meds. However the idea that suicidal individuals don’t do this or that they enact a huge decision based on a spur of the moment feeling is ridiculous and infantilizing. From personal experience I have been struggling with the problem of why to stay alive for four years now. If I were to commit suicide in the future (this is not a suicide note. Nobody call the cops. Please dear God I do not want to have to go to the ER and explain that I’m not suicidal. Again.) I would not want my death to be held up as a moment of weakness or a single bad decision. If I were to commit suicide it would be after years of struggling and writing and considering and deliberating. If you look at the lives of individuals who do commit suicide, I think you’ll find more often than not that they have thought about it long and hard. At least give them that much credit. Do their memories that favor. If we’re going to do anything, we should provide everyone with the tools and knowledge to make informed decisions, and then we should give people the freedom of life or death, without the prejudice of saying that life is always and inherently better than death and if you believe otherwise you’re deranged.