Tag Archives: Coping

Psychological Evaluation

Last week, I would’ve had my ten year Aspieversary/autiversary or the anniversary of my autism diagnosis. I did realize this and even started writing a blog post about it, but it didn’t feel right to celebrate an anniversary of something that no longer is. After all, I’m no longer diagnosed as autistic. I was also quite shocked when it dawned upon me that I’d been institutionalized for almost the entirety of these ten years. I then started thinking about the ten years before that and how much longer they seemed to have taken. Time flies when you’re getting old(er).

I then started writing a post on the psychological evaluation that I had the day before my would-be-Aspieversary. That was hard too – both the evaluation and writing about it. For the first time that I had a psycholoigical assessment, the personality testing was in fact the easiest – or least difficult – part. I just can’t get past the fact that I did rather poorly on some of the neuropsychological tests and didn’t seem to score as great on the intelligence test.

The neuropsych testing consisted of a couple of memory tests. Most went okay, but with one, I kept losing focus. Then there was a test for semantics, the way words and their meanings are formed and articulated. I had to name as may words starting with a given letter or in a given category (animals, occupations) in one minute as possible. In the animals category, I started blurting out donkey, squirrel and Brazilian wandering spider, which are three words I use repetitively, and then I got stuck. I don’t know what the average score is of course, but some of my staff tried this one and did much better than I did. Of course, they weren’t in an actual test setting.

Then I got what I think is the verbal part of the Wechsler Adult Intelligence Scale. Older versions of this intelligence test consist of a verbal and a non-verbal (performance) part, but the performance part isn’t possible for me because I’m blind. The current version does not provide a verbal or performance IQ score, but it still consists of verbal and non-verbal tasks. I did okay and still seemed to have the same strengths (similarities, arithmetic) and weaknesses (compreheension) as when I last had an intelligence test twelve years ago. I don’t think I scored as mind-blowingly high as my parents would want me to though. When I told my mother so, she said I just don’t want to know that I’m gifted. I don’t know whether she meant that I didn’t try my best or that I underestimated my actual performance.

I also got some tests that seem to be specific to autism. One of them was a kind of weird test that seemed to measure theory of mind. I heard these little stories and then had to say whether a character had said something inappropriate. Then there were follow-up questions abou thow each character would feel, whether they could know that what they said was inappropriate, etc. I got rather frustrated with this test.

Some of the questionnaires also seemed to be relevant to my possible autism. One was some kind of systemizing/empathizing test. I once took a similar (or the same) test online and scored below-average on both scales. I mean, I am interested in systemizing, but I can’t actually do it right in daily life. For example, I can’t balance a checkbook, but I do take an interest in random strings of information, such as share prices (yes, I did at one point perseverate on that). There was also this test that asked about the ability to read one’s own feelings. This was a rather weird one to me, but that may be because I barely understand how anyone would be able to tell the difference between for example feelign excited and feeling enthusiastic.

Lastly, I got a coping sytles questionnaire and several personality tests. I scored high on avoidance twelve years ago when I got the same coping styles questionnaire and I think that has only gotten worse. After all, all I’ve learned in the mental hospital is to distract or take a tranquilizer. This is the worst coping style according to my college psychology professor. I did okay on the personality tests. I mean, it’s likely I have at least some personality disorder traits, but that’d show in my behavior too anyway.

A week has gone by since the psychological evaluation. My husband had to fill out another questionnaire about me again over the week-end. It was some kind of executive functioning questionnaire and I felt rather awkward at how many boxes my husband ticked. I also got a call from the student doing the evaluation on Monday with one more questionnaire. It seemed to be the other half of the systemizing/empathizing thing. I got to do that over the phone. The student also asked for my E-mail address, so that the psychologist could contact me regarding some questions and concerns I had written down and taken to the assessment.

I have mixed feelings about the possible outcomes of the assessment. I mean, I don’t even know whether I want to be autistic after all. Of course, you’d think, most people wouldn’t choose to be autistic over neurotypical. That’s not what’s at stake here though, since I won’t change neurotype if the psychologist diagnoses me one way or the other. I still think I need the validation that my impairments are real. Realizing these impairments makes me feel a little inferior to the people I love, and in that sense, it’d be great if I made them all up. Of course, that may be internalized ableism.

Tips for Coping with Suicidal Thoughts

Screw you, #BEDN. I screwed up the day after I planned to continue writing everyday this month. Yesterday was a bit stressful. I baked an apple pie to remember the eighth anniversary of my psychiatric institutionalization, but I also felt overwhelemd with memories from the day of my crisis. In addition, yesterday was designed to be plan your epitaph day by the inventors of weird holidays. I only found out through this week’s #TuesdayTen. I was originally planning on writing a post on tips for coping with suicidal thoughts for #TuesdayTen, but the pressure of having to think up ten coping strategies and the doubts as to whether it’d fit in, made me skip the occasion. The idea stuck around though, so I’m going to write down some coping tips today.

The first important key is realizing when depression or despair sets in before you reach rock bottom. When you are acutely suicidal, most of the tips I’ll mention below will sound completely useless. However, if you’ve realized you are depressed or otherwise severely distressed, you may be able to enlist the help of others in staying safe. Here are some tips that can help you through some suicidal ideation. When you are actively planning suicide, these tips may no longer work and you’ll need to go to the emergency room or psychiatric crisis service.

1. Enlist the support of family or friends. Like I already said, supporters, such as family may be able to help you remember why you want to live. If not, they may be able to intervene to keep you safe whilst getting a mental health professional involved. When I was in my crisis in 2007, I had no support in the city I was in at the time. That is, I had my parents, but they weren’t particularly helpful (and I honestly can’t fully blame them) at the time.

2. If you don’t have family or friends to support you, there are support sites and telephone hotlines for people in crisis around the world. While again, if you are in acute danger, you need to go to the emergency department or psychiatric crisis service, when you are still able to talk it through, do so.

3. Think of what your goals are, what you want to get or avoid with suicide. Obviously, religious beliefs about an afterlife aside, you won’t gain anything from suicide. That doesn’t mean it doesn’t seem like it. Some people believe: “At least I’ll be able to rest then.” In this sense, what you want to avoid through suicide is important too. Discuss with your family or a mental health professional how you can reach this goal while remaining alive. For example, I knew as I was talking to the crisis service psychiatrist in 2007 that I didn’t really want to die – I mean, who wants to? -, but that I couldn’t cope with my life as it was anymore.

4. Think of the people you’ll leave behind. No, I don’t mean thinking of them having to make funeral arrangements and how selfish you are for leaving your family with the financial burden. That is not going to be helpful. Just for your information, as a family member, don’t ever burden a suicidal relative with this kind of crap, no matter how confident you are that they are “just doing it for attention”. However, if you do have people you still care about when you’re in despair, thinking about them can help lift your mood. Despair is an incredibly lonely feeling, but there are people who care about you.

5. Be careful about chanigng medications or other treatments for depression while you are actively suicidal. Though electroconvulsive therapy (ECT) is relatively safe for severely depressed people, antidepressants carry the risk of increasing suicidality. Always be sure to discuss suicidal ideation with your mental health professional and don’t change your medication regimen without close supervision, preferably from a psychiatrist.

Loneliness in Autistic People #AtoZChallenge

Welcome to day twelve in the A to Z Challenge on autism. Sorry for being late to publish my post again. Today, my post deals with a common experience in autisitc people: loneliness.

Autistic people by definition have trouble forming friendships, especially with non-autistic people. For this reason, many autistic people feel isolated and lonely. I am no exception. Other than my husband, I have no close friends, though I have a ton of Facebook friends. Most I don’t really know.

in adolescence particularly, I felt lonely. I remember writing in my diary a month into starting secondary school that I realized everyone had built friendships already and I hadn’t. In elementary school, I had usually had one or two friends, though I had trouble interacting with them too. Most of my elementary school friends were themselves quite isolated too.

It is a myth that autistic people are not affected by loneliness. In fact, many adults with autism experience depression and low self-esteem because of their lack of quality friendships. However, depression and anxiety also commonly cause autistic people to feel lonely and to self-isolate. I, for one, did not attempt to socialize anymore after I realized I clung too much to peoople who didn’t in fact considier me a friend. By the end of eighth grade, I was seemingly fine with the fact that I had no friends, but was actually quite depressed.

Even autistics who do have friends, can feel lonely. This is because autistic people have a different perception of friendship than neurotypicals. For example, neurotypical people usually associate friendship with affection, companionship and intimacy. Autistic people often don’t experience these qualities, or experience them to a lesser degree, in their friendships. They may therefore be lonely because of having a poorer quality friendship. For example, I sometimes refer to some of my Facebook friends as actual friends in conversation, but I recognize that the relationship I have with them is not as close as that of other people with their friends.

There are many ways to cope with loneliness. For example, autistic people might want to connect to other autistic people. There are play groups for autistic children and social and support groups for teens and adults with autism in most urban areas. This not only will help autistic people connect to others, but they wil also be able to find someone whose experience is similar to theirs. Hence, they may feel less disconnected from their environments, which can also be a form of loneliness.

Of course, it is also important that autistic people develop their interpersonal skills. In the Netherlands, many mental health agencies provide specific programs for adults with autism, where they can also follow social skills training. This may help them build and keep friendships and thereby lessen loneliness.

Lastly, many autistic people find that pets can help them feel less lonely. I for one don’t have a particularly close connection to our two cats, but that is possibly because they’re at our apartment, where my husband primarily cares for them.

Ways to Cope with Anxiety

A fellow patient was screaming a lot today. It made me feel anxious, yet I was too sleepy to get out of bed until it really got on my nerves. Situations like these are hard to cope with, since the fear is not just “in my head”. Yet I get anxiety that is actually “in my head” a lot too. Some of it takes the form of worry, while other times, the anxiety takes the form of panic.

i was inspired today to write about things that help me cope with anxiety. Of course, different forms of anxiety require different coping strategies. For example, my PRN medication doesn’t help with worry, but it does help some with panic. Meds aside though, here are the activities I can think of now to cope with anxiety.

1. Breathing techniques. I learned some in movement therapy a few years ago, but they usually made me dissociate. Now that I’m generally more grounded, in that I don’t dissociate as often anymore, I’ve found breathing techniques can help me calm my mind. I need to make sure I actually concentrate on my breathing or I’ll go hyperventilate just when I’m trying to relax.

2. Mindfulness. I particularly like the “body scan”. With this, I go from toe to head, concentrating on each part of my body and how it is in relation to other parts of my body or my surroundings (like the chair I sit on). I learned this in yoga a few years back and, like breathing techniques, it could set off some dissociation when done the wrong way. The key seems to be not judging my mind when it wanders off, yet getting my focus back to my body as soon as I notice. Not judging my body is also important. I shouldn’t be overthinking that pain in my tummy or how my feet are wobbly, but just register my body and how it feels and then move on.

3. Reading. Last year, I rediscovered my love of juvenile fiction when I first started buying eBooks on Kobo. I make sure I always have some teen fiction in my Adobe Digital Editions. Teen fiction usually is just involved enough that it requires some concentration and just light enough that it doesn't get boring or triggering.

4. Music. when I’m worrying, I like to pick out music that has strong or funny lyrics, so that I will be listening to them. I have some great German country music on my computer (I understand a little German). Again, it is just hard enough that I will want to concentrate on the lyrics but not so hard that I give up.

When I’m more in a jittery state, it helps to pick music that has a soothing melody, or more often actually music that I can dance to. When I choose music to dance to, I don’t listen to the lyrics, so I might as well pick one of my Latino music albums that I bought when I was into world music.

5. Exercise. Dancing, as I said, can help, but so can a work-out. We have some exercise machines on the unit, so I can go on the stationary bike or elleptical trainer. I don’t usually last long on either as I’m in terrible shape, but even a ten-minute work-out can greatly reduce my anxiety.

6. Writing. Usually writing helps me not to lessen anxiety, but to express it in a safe way. I am still looking for the right journaling program (and no, Notepad still doesn’t feel right). Blogging (as opposed to freeform journaling) however can also greatly help me structure my thoughts.

The List

The Five Stages of Grief in the Recovery Process from Binge Eating

When browsing blogs on mental health on Mumsnet, I came across a blog on recoveyr form alcoholism. While there, I found a post on the five stages of grief in substance abuse. You are probably familiar with Elisabeth Küber-Ross’ five stages of grief in bereavement. These same stages apply to some extent to those recovering from an addiction:

  • Denial: people feel that they do not have a problem concerning alcohol or substances. Even if they do feel as if they might have a small problem, they believe that they have complete control over the situation and can stop drinking or doing drugs whenever they want.

  • Anger at the fact that the addict has an addiction or at the fact that they can no longer use alcohol or drugs.

  • Bargaining: the stage where people are trying to convince themselves or others that they will stop substance abuse in order to get out of trouble or to gain something.

  • Depression: sadness and hopelessness, which usually happen during the withdrawal process from alcohol or drugs.

  • Acceptance, not merely as in admitting you have a problem with alcohol or drugs. Acceptance involves actively resolving the addictioon.

I do not have an alcohol or drug problem, but I do exhibit disordered eating. I wonder to what extent these stages of grief apply to the recovery process from eating disorders, in my case mostly binge eating. Denial is certainly common in individuals with all types of disordered eating. I for one was in the stage of denial up until quite recently. This is not merely not being aware of the problem, like I was in early adolescence. Rather, from my teens on, I did realize to some extent that my eating habits weren’t normal. I remember one day buying five candy bars at once and eating them all in one go. When my classmates pointed out that this was outrageous, I shifted from lack of awareness of my eating disorder into denial.

As I said, I stayed in denial for years. I continued buying sausage rolls for lunch every single day until the end of high school, then at blindness rehab ate candy and chips everyday. I gained rougly ten pounds in those four months at blindness rehab, thereby reaching the upper limit of a healthy BMI.

It took several more years before I moved into the stage of anger. By 2008, I was convinced I would die young, and my unhealthy eating habits were one reason for this. I hated myself and my body, yet didn’t stop eating unhealthy amounts of candy. If anything changed at all, I binged more.

I don’t know how I maintained a relatively healthy weight until 2012, but I did. I did start purging in 2011, which can be seen as either a response to anger or a form of bargaining. After all, bargaining can also be seen as trying to reduce the (effects of the) addiction while not completely trying to abandon it.

I reached overweight status in 2012, then obese a few months ago. I started going to a dietician in 2012, then quit going again, went back in the fall of 2013, quit again, and recently started going again. I am still at the stage of bargaining regarding my disordered eating. When told I just need to stop buying candy, I object. Instead, I want to lessen my candy consumption, keep it under control. Yet isn’t the whole point of an addiction not the substance, but the lack of control? I know that one difference between food and alcohol or drugs is that you can’t completely abandon food, and my dietician said that getting fruit or veggies within easy reach as a substitute for candy, is unlikely to work. After all, I’m going to keep the idea that food is an easy way out of emotional stress.

Non-Disabled Standards and Afjustment to a Disability

When in counseling at the blindness rehab center in 2005, the psychologist, herself blind from birth, had me read her college thesis. I don’t remember its exact topic – it was soomething about adjustment to disability -, but I do remember her outlinign stages of becoming aware of nd adjusted to disability:

  1. Adhering to non-disabled standards while not feeling one’s disability is a handicap. This is the stage where a person is mostly unaware of their difference from non-disabled people. People with an acquired disability may not go through this stage – I am not sure whether the psychologist, herslef blind from birth, talked about this -, but congenitally disabled people do, for example, when they’re in special education surroudned by all disabled peers.
  2. Adhering to non-disabled standards while feeling one’s disability is a handicap. This is the stage of becomign aware of one’s difference, but not accepting it and assuming one shuld really be non-disabled.
  3. Putting non-disabled standards into perspective while feeling one’s disability is a handicap. This stage is somewhat of an intermediate stage between non-acceptance and adjustment. I think it can be seen as encompassing the reassessmet and reaffirmation stage and the coping stage in Tuttle’s model. While in this stage, the person acccepts the use of alternative techniques, for example, but still feels their disability makes them somewhat inferior.
  4. Putting non-disabled standards into perspective while not feeling one’s disability is a handicap. This involves self-acceptance as a person with a disability, with an awareness of the way in which one is different but while not seing this as making the person inferior.

I do not remember ever having been unaware of my disability, but my parents tell me that, as a preschooler, I was. I was quite a cheerful child back then. When I was still having the DID diagnosis, my parents assumed the trauma causing it was my having had to go into special education and hence becoming aware of my difference. This is somwhat contrary to my rehab psychologist’s experience, who shared in her thesis that she was mostly naive towards her difference when attending special education.

Stage two is where I was stuck for years or even decades. I was solidly stuck on this stage when I was in rehab. When my mental health conditions forced me to step back and put non-disbled standards into perspective I slowly slided into stage three, but with a twist of overcompensation. I became insistent on accommodations probably a little more than I could expect. I am still not sure whether my emphasis on my difference as a badge of honor, so to speak, is in itself unhealthy. I do think that its masking a sense of inferiority is.

What I am not sure about, is what putting non-disabled standards into perspective means. Can you overemphasize your difference and alienate yourself from non-disabled people? Or are disabled people naturally alienated from the non-disabled through the idea of non-disabled standards. After all, what I see in this stages model, is that the person with a disability is always seen as deviant rather than equal. They adjust to their disabiliy relative to non-disabled standards. Is this really as it should be? From a social model perspective, can we abandon this non-disabled standards paradigm and replace it with ahumand ignity paradigm? If we can, will this make adjustment easier? I will have to think on this.

The Many Losses of Blindness

There are many aspects of blindness a person losing their vision must adjust to. I just found an article describing twenty losses of blindness. These include:

  • Losses in the basic sense of psychological security.
  • Losses in basic skills, such as mobility or techniques of daily living.
  • Losses to communication, such as loss of social adequacy, ease of written and spoken communication.
  • Losses of appreciation, such as loss of physical integrity, visual perception of the pleasurable or beautiful, or loss of confidence in the remaining senses.
  • Losses concerning occupation and financial security.
  • Losses affecting the whole personality, such as loss of independence.

For me, losses in my basic sense of psychological security are common and not just blindness-related. I am not dealing with losses in basic skills at this point, and have never felt a loss in communication. Oh well, I have, but it was easy to adjust to.

Where I really struggle is with loss of appreciation. To be honest, I’d hoped to gain color perception back after surgery. This didn’t happen, and there is no way of compensating for the meaning of colors. After all, they can’t be touched, heard or otherwise non-visually perceived. Having always been quite a visual person, I still have a vivid but decreasing imagination of color, but this actually further reinforces the knowledge that I’ve lost the actual perception of it. I remember in 2004 going to blindness rehab and discussing with my fellow students what we would do if we gained sihgt. Most people said they’d read, travel or otherwise gain independence. I said I’d appreciate the beuaty of the sights around me.

As for losses to occupational or financial security, these have not really been related to blindness in my case. My parents say I would’ve gone into engineering or math if I’d been sighted, but this not at all interests me and never did after the age of around twelve. Whether vision loss contriubted to my loss of interest in math, I do not remember. I did consider career paths, such as in speech and language pathology, that are not suitable for a blind person, but I do not know whether I genuinely wanted to become a speech/language pathologist or just wanted to read up on it in university. What I did lose that somewhat relates to this, is recreation. I still miss not being able to draw, for example. Whether this is a loss of appreciation or a loss of occupation, I do not know.

Lastly, there is the loss of personal independence. I did lose independence skills when I lost vision up until my most recent vision loss ten years ago, but now my dependence is mostly related to my mental health conditions and autism. I have to think further on how this personal independence thing affects the whole personality, as is postulated. I think more is meant than just loss of practical independence, but I’m not sure.

Adjusting to Total Blindness

In his book Freedom for the Blind: The Secret Is Empowerment, James H. Omvig talks in the chapter on emotional adjustment about the importance of discussing blindness intensely and mentioning the word “blind” over and over again. This, according to Omvig, makes blindness part of a blind person’s everyday language and desentiszes the negative connotation of blindness.

I have been practising this desentisization for years, and it has helped me to adjust to my blindness. In 1999, when I transferred from special education into mainstreaming, I made a conscious decision to identify as blind from then on. After all, my tiny bit of residual vision was not going to be relevant amongst all fully sighted peers.

Still, I know that blind does not necessairly mean no visiion at all. In 2005 or 2006, I wrote my Dutch information page on blindness, and one of the FAQs I answered was whether all blind people are completley blind, and I answered it with a clear “No”.

As I’m facing the reality of the mostly failed cataract surgery, I wonder if I need to do a further desentisization, this time with the term “totally blind”. I have been doing this for a bit already since early this year, when I noticced my light perception had decresed to the ability to discern daylight from nighttime, but at the same time I was hoping it wouldn’t be necessary with surgery. Now my vision is back to probalby where it was around 2004 or 2005, with my being able to see room lighting, detect the position of windows, etc. I was writing this post, then midway through it left my darkened room and realized that my vision, while still technically being only light perception, had increased a bit from before surgery. Should I use this as an excuse not to desentisize myself to the idea of being totally blind?

I know that now that I’ve had cataract surgeyr, I’ve had my last chance of regaining sight. My intention with seeking an ophthalmologist’s opinion on surgery was more of a psychological nature than of a medical nature. Of course, I hoped for that hand motion vision the eye doctor said was the best possible outcome, but at the same time, I realized right from the start of this journey that a more likely outcome would be no improvement in vision. After all, before the cataract specialist had pretty much given me the choice, I’d expected him to flat out refuse to perform the surgery on me. Once I’d been put onto the waiting list, my hopes were somewhat up, but I still counted on a bad outcome.

Okay, I know this adjustment process has taken me over two decades, so can I technically expect to accept that I’m totally blind and will never regain my vision two days post-surgery? I’m not sure, but I’m actually tired of this adjustment process.

Stages of Adjustment to Blindness

Today on the Psych Central blog, I found an article on coping with chronic illness. According to Donna White, the author of the post, people who are facing a chronic illness go through the five stages of grief populated by Elisabeht Kübler-Ross as occurring in bereavement. These stages are denial, anger, bargaining, depression and acceptance. This post inspired me to pull out Dean Tuttle’s 1996 book Self-Esteem and Adjusting with Blindness. He describes not five but seven stages of adjustment:

  1. Physical or social trauma. This is a situation or circumstance the awareness of which brings about severe anxiety, discomfort and/or turmoil. In blind people, this may be the onset of blindness or vision loss (for those losing their sight later in life), becoming aware of one’s blindness (for the congenitally blind), or the knowledge of impending vision loss (for those who know they will lose their sight at some point before actual onset of blindness).
  2. Shock and denial. This involves mental numbing, including feelings of detachment or unreality, as well as the cognitions involving denial. Denial can be partial or full.
  3. Mourning and withdrawal. This stage happens when people become more aware of the reality of their situation and the psychological defense mechanism of denial decreases. Characteristics of mourning include self-pity and a sense of helplessness. People in this stage often withdraw from their physical or social environment. Hostility may also be part of the mourning phase.
  4. Succumbing and depression. This phase involves a gradual awareness of more specific consequences of vision loss. When these (real or perceived) consequences exceed a person’s ability to cope, they may fall into depression. The succumbing phase is characterized by negativism and pessimism.
  5. Reassessment and reaffirmation. This phase involves the re-evaluation of one’s situation. Anger, depression and self-pity begin to recede and people re-examine the meaning of their life, their values and beliefs and habitual patterns of behavior.
  6. Coping and mobilization. In this stage, individuals manage the demands of their social and physical environment and direct their energy towards the tasks of everyday life.
  7. Self-acceptance and self-esteem. Having a positive self-image is the last stage in adjustment. Accepting one’s blindness is a prerequisite for this. However, a positive self-image is far mroe than accepting blindness. It involves the realization that one is a valuable person. This means confronting one’s beliefs about oneself and one’s blindness, and challenging negative ideas about oneself.
I was unable to see where bargaining fits into the seven-stage model. Bargainign is where I believe I’ve been stuck for years, although I may confuse bargaining with partial denial.

In 2004 and 2005, when an online friend had sent me Tuttle’s book, I had done a series on my old blog on adjustment with my vision loss and actually the reality of finally having become totally blind. I guess in the next few weeks, I will revisit these posts. I realize I’m actually back where I was in 2004, realizing I’ve become totally blind and (now truly) there is no way this can be fixed.