Things People with Mental Illness Should Stop Doing

Through a fibro blog I read, I came across 30 things to stop doing to yourself and its adaptation 16 things fibromyalgia sufferers need to stop doing. I am going to adapt this list for people with mental health conditions.

1. Stop running from your problems. This one may seem obvious, but oftentimes, people with mental health problems go on and on until they crash. It is not like your mental health condition isn't there if you run from it. We aren't supposed to avoid all unhappiness and hurt. Rather, confront your problems and learn to accept them, adapt to them or solve them.
2. Stop lying to yourself. Again, your mental illness or life challenge won't disappear if you pretend it isn't there. Like the author of the original list says, the first and hardest chance we can take in life is to be honest with ourselves. There is this idea in some forms of therapy, notably dialectical behavior therapy, that change and acceptance go hand in hand. In other words, you won't change if you don't face the truth.
3. Stop putting your own needs on the back burnder. Having needs is human and normal. Everyone has a need for acceptance, safety, nurturing, etc. As mentally ill people, we often get taught that these needs are not normal because we may expresss them in unconventional ways. Stop thinking that just because you're told that you do stuff "for attention", it's wrong to need attention. On a related note, stop thinking that taking good care of yourself is wrong.
4. Stop trying to be someone you're not. You may want to live without your mental illness, but that doesn't mean you'll become someone else in the process of recovery. Recovery is about becoming the best you you can be. It is a challenge to be yourself in a wolrd that reinforces conformity, but it is a challenge worth taking on.
5. Stop holding onto the past. Trauma may've shaped your life and may've even caused your mental health problem, but you cannot change the past. I disagree with the origninal article's statement that you shouldn't be thinking much about your past, but don't use it as an excuse to keep wishing for a new past. Work on processing feelings that come up in the present.
6. Stop exclusively looking to others for happiness. You are responsible for your own life. While support people or professionals can help you, they will not solve your problems.
7. Stop thinking you're not ready. This thought will often become a self-fulfilling prophecy. No-one, including no currently mentally healthy person, feels 100% ready when they need to step outside of their comfort zone, but it take sstepping outside of your comfort zone to recover.
8. Stop complaining and feeling sorry for yoruself. I disagree with Julie Ryan, the fibro blogger, saying that whining for five minutes without involving friends is okay, and the rest is not. In fact, it can help to whine to an understanding peer sometimes. Where I agree, is that it needs to stop.
9. Stop wasitng time explaining yourself to others. As Julie says, most people won't care enough to listen. Just assert yourself. If people are close to you, it may be helfpul to explain your mental health condition, but to people you casually meet, a simple "No" should be enough.
10. Stop overlooking the beauty of small moments. It's often in the little things that we find that glimpse of happiness. My classical culture teacher in high school once said that there is only one moment in your entire life that you can be happy, and that's now.
11. Stop acting like everythign is fine if it isn't. No, you aren't okay. You're depressed, anxious, having dark thoughts or otherwise suffering. While you shouldn't wallow in self-fity, as said before, you shoudln't lie to yourself either. You may need to put up a smile for a bit when with people who won't accept your mental illness, but among friends and especially with your mental health professional, it's okay and even helpful to be sincere.
12. Stop trying to be everything to everyone. Doing so is impossible, and trying will only burn you out (if it hasn't alreaady). Try to take the chance to make small contributions to people's lives instead.
13. Stop worrying so much. It may be especially hard when you have a mental illnes, but cognitive therapy is effective for a reason: you can change your thought processes. Worrying will not strip tomorow of its burdens, as the original article says, but it will strip today of its joys.
14. Stop focusng on what you don't want to happen. Focus on what you do want to happen instead. This is going to foster an attitude of goal-setting rather than one of avoidance, and this will help you a long way along your recovery.

I didn't include all of the original items. With some, like the commandment to stop spending time with the wrong people, I disagree (there are no wrong people). Others I did not feel were too applicable to mental health recovery. I probably could add some more items to this list, too, but for now I won't.

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.

Eye Surgery Was Yesterday

Yesterdy was my eye surgery. I got onto the unit half an hour early and was admitted over an hour late because the person before me required complex care. I would've been operated on at 10:00 AM but wasn't until around noon. Technically, the operation was somewhat of a success and somewhat of a failure. The ophthalologist was able to remove the lens, but not implant an artificial lens. She told my husband that for color vision, which I was mostly hoping for, this would not make a difference.

Functionally, well, what can I say? I went to get checked up today and was able to see the flashlight on the first try and also see the blue light used for checking eye pressure. Prior to surgery, the optometrist had had to move the light closer two times before I could see it and I didn't see the blue light. To be honest, I knew the blue light was blue; I could not actually see that this time either. The doctor checked whether I could see what direction the light came from (light projection) or whether I could see her hand move right in front of my eyes, but I could see neither. I had swelling on my cornea, so it could be once this clears up I will get some further improvement in vision. Overall though, I feel that functionally surgery mostly failed, and I reckon the cataract specialist would never have put me on the list had he known this tiny improvement would be all I got. I do hope once I'm all recovered, I can close this chapter and finally accept the fact that I will always be completely functionally blind.

Research Recommendations for Improving Treatment for People with Personality Disorders

Two studies in nursing journals that I read recently examine good practice for personality disorder treatment. Bowen (2013) specifically studied ideas for intervention with borderline personality disorder patients, whereas Fanaian, Lewis & Grenyer (2013) studied more general ideas for implementing personality disorder services. Bowen also emphasized direct intervention strategies, whereas Fanaian et al.'s study more focused on organizational structure. Bowen (2013) interviewed nine mental health professionals, four of whom were nurses, working at a specialist unit for patients with BPD. Key apsects of good practice mentioned by interviewees were:

• Shared decison making: for example, service users and staff should meet in community meetings to discuss and think through decisions that a service user might otherwise make impulsively. This thinking thorugh also counters black-and-white thinking.
• Rules should be actively recreated, rather than being strictly enforced or being abandoned. This is an offshoot from the shared decision making in the above bullet.
• Patients should have social roles, such as jobs on the unit nd group therapy with a pratical focus. This is a way of bringing into the open and then challenging interpersonal difficulties that are so typical of BPD.
• Social disturubances must not just be prevented, but also be used as an opportunity for learning.
• Peer support, including feedback on behaviors, but also including compassion. One interviewee also commented that peer support can enhance the patients' looking inward for the resources to help themselves, rather than viewing the staff as sole bearers of wisdom.
• Open communication. For example, this unit had a structure whereby three service users were elected to discuss issues happening on the unit with the staff as a means of liaison.
• Involvement with the person as a whole, seeing them as more than their BPD symptoms.

Bowen (2013) does highlight that not all of these aspects of good practice can be generalized. After all, this unit was a specialist unit for treating BPD and had its structure built so that these aspects of good practice could be met. For example, there were daily meetings, group therapy, and patients had jobs on the ward.

It was found that mental health workers on this unit had a pretty optimistic outlook on recovery from BPD. This is in contrast to research which shows that mental nurses have negative attitudes about BPD patients. Fanaian et al. (2013) emphasize this negative attitude towards people with personaltiy disorders as a major barrier to appropriate care.

Fanaian et al. (2013) had about 60 experienced clinicians in personality disorder treatment, including psychiatrists, psychologists, social workers, a nurse and a counselor sit in groups of four and brainstorm on topics relevant to personality disorder treamment. They overwhelmingly found that current practice in mainstream mental health settings is both poor and inaccurate. Ways to improve practice included:

• More education and training on the subject. Some groups also recommended that workers in non-psychiatric settings who have frequent contact with personality disorered people, such as social services staff, be trained in personality disorders. Carers, such as family and friends, also were said to need education and training.
• More support through supervision and leadership. For example, there should be more supportive and regular treatment team meetings. Clinicians also mentioned better access to Internet resources on treatmetn and assessment for mainstream mental health staff. There also should be greater support for staff approaching burn-out, as it was felt that staff working with personality disordered people have a high risk of burn-out and work-related stress.
• A shift from risk management to recovery-focused treatment and case management. Acute hospitalization should be avoided when possible. Rather, patients with personality disordeers need intensive, multidiscipinary case management.
• Clearer guidelines and protocols. Many groups of clinicians emphasized a consistent approach across teams, particularly when managing crises.
• An attitude shift to decrease stigma. Some groups emphasized the fact that many health professionals have a negative attitude about personalityy disorder patietns, and this is a barrier to effective treatment.

Fanaian et al.'s (2013) study, like all studies, has its limitations. The clinicians participating in the study were invited to a personality disorders meeting based on expertise and experience. Therefore, it is not known whether these findings generalize well into mainstream mental health provision.

References

Bowen M (2013), Borderline Personality Disorder: Clinicians' Accounts of Good Practice. Journal of Psychiatric and Mental Health nursing, 20(6):491-498. DOI: 10.1111/j.1365-2850.2012.01943.x

Fanaian M, Lewis KL, & Grenyer BFS (2013), Improving Services for People with Personality Disorders: Views of Experienced Clinicians. International Journal of Mental Health Nursing, 22(5):465-471. DOI: 10.1111/inm.12009.

Medication Treatment of ADHD Symptoms in Autistic Children

Autistics often have symptoms of ADHD. These symptoms are often treated with medication. About 15% of autistic children take psychostimulants or atomoxetine (Rosenberg et al, 2010). Stimulants are proven to be effective for ADHD in non-autistic children. Whether the same holds true for autistics, however, had not been systematically researched until now. Reichow, Volkmar & Bloch (2013) examined seven randomized, double=blind, placebo-controlled studies comparing methylphenidate, clonidine or atomoxetine to placebo in children with autism spectrum disorders and ADHD symptoms. Four trials were found for methylphenidate, two for atomoxetine and one for clonidine.

According to Reichow et al. (2013), methylphenidate was found to be effective for ADHD symptoms in autistic children. The effectiveness was slightly lower than it is for typically developing children with ADHD but still statistically significant. There was a greater risk of side effects in autistics, particularly for irritability, depression and withdrawal. The risk for common side effects such as insomnia and decreased appetite was similar to that found in typically developing children. One of the studies involved preschool children, and it was recommended by Reichow et al. after reviewing this study that methylphenidate-taking preschoolers with autis be closely monitored due to increased adverse events.

Clonidine and atomoxetine both showed moderate but not statistically significant effectiveness in autistic children (Reichow et al., 2013). These medications warrant further study, also given the fact that only one or two studies were found that met the inclusion criteria for a systematic review.

References

Reichow B, Volkmar FR, & Bloch MH (2013), Systematic Review and Meta-analysis of Pharmacological Treatment of the Symptoms of Attention-Deficit/Hyperactivity Disorder in Children with Pervasive Developmenetal Disorders. Journal of Autism and Developmental Disorders, 43(10):2435-2441. DOI: 10.1007/s10803-013-1793-z.

Rosenberg R, Mandell BS, Farmer JE, Law JK, Marvin AR, & Law PA (2010). Psychotropic Medication Use among Children with Autism Spectrum Disorders Enrolled in a National Registry, 2007-2008. Journal of Autism and Developmental Disorders, 40(3):342-351. DOI: 10.1007/s10803-009-0878-1.

BPD Subtypes

When searching for information on BPD, I came across a set of subtypes that describe the various features of BPD. These subtypes are:

• Discouraged: this type of borderline is either avoidant, believing no-one will like them anyway, or overly dependent on others. They have an intense fear of abandonment. Borderlines of this type may also suffer from depressive symptoms.
• Impulsive: this is the most hated BPD type among professionals. People who are primarily impulsive tend to act before thinkign. This includes violence or other antisocial behavior. Conversely, they may also engage in constant approval-seeking.
• Petulent: borderlines of this type use passive-aggressive behavior, including emotional or physical self-abuse, to get their needs met by others. They have an intense fear of abandonment,, unstable self-image, and inability to express their needs properly.
• Self-destructive: this includes depressive and self-harming tendencies. People of this type may not have many BPD traits other than self-injury and affective instability, so they may not technically meet the criteria of BPD.

Please note that people with BPD may have some features of one type and some of another. I, for one, have features of the discouraged and petulent types.

All types except for the petulent borderline operate in an abandoned child mode. Petulent borderlines operate in an angry child mode. I do see this point, but I want to stretch that the angry child usually masks the needs of the abandoned child, as my therapist explained. I myself cannot feel sadness unless I've first expressed intense anger or rage. Yesterday, I found myself in such a situation. I had had a minor conflict with my husband which led me to fear abandonment. As I got back to the ward, the nurses were assuming I'd had a good day - after all, it was my anniversary -, and were encouraging me to think positvely. Now I could and maybe will at one point write up a whole post on the positivity paradigm, but suffice it to say I snapped. I had a rage that, after a lot of back-and-forth screaming between me and the nurses, led to me running off and wandeirng around grounds screaming. I could only start to feel the sadness and fear of abandonment after I'd blown off some steam and calmed down again.

Eye Surgery

I've been legally blind all my life from a condition called retinopathy of prematurity. This condition is i itself not degenerative, but it often leads to retinal detachment due to scar tissue pulling on the retina. In addition, cataracts and glaucoma may develop. In 1993, I developed a cataract on my right (worse) eye. The cataract specialist felt it would be useless to operate on, so my own retina specialist removed the lens, but didn't implant an artifical lens because I was either too young or she didn't have the ability to perform this procedure. In around 1998, I lost what little vsion I had retained in that eye due to a retinal detachment.

In 2003 or 2004, I developed a cataract on my left eye. I went to an eye doctor for somethigng different (suspected glaucoma, which was then ruled out) in March of 2004. While we were there anway, my father asked the doctor whether cataract surgery would make any sense. The doctor was vague, saying if I thought I would regain some sight he might be willing to put me on the list, but he wouldn't recommend it really. I was raised with the idea that I had to accept blindness and, from my last surgery in 1994 on, my parents treated me like I had no useable vision, so I decided I shouldn't pursue surgery.

But the thought ate at me: what if surgery could restore some of my sight? In 2011 or 2012, I started discussing this with the nurses at my former institution, and they advised me to seek out a medical opinion. Earlier this year, I took up the courage and asked my GP to refer me to an eye doctor at the city's university medical center. When there, the doctor proposed an ultrasound to look at the condition of my retina and optic nerve. He also requested my records from the hospital I'd been going to in the 1990s. Then he sent me on to the cataract specialist.

The cataract specialist said there was really no way of knowing what the actual functional outcome would be. Like, I had no retinal detachment on my left eye and my optic nerve was fine, but that didn't mean I'd actually gain any sight back per se. I read up on some research and found that structural condition of the retina really does not say everything about visual function. The cataract specialist was willing to put me on the list for surgery, and I came in hoping to get surgery, so I consented to this. There is some risk that I'll get bleeding or a retinal detachment due to surgery, but given that I only have a minimal bit of light perception now (being able to discern daylight from night time but not much else), I'm willing to risk this.

Surgery is next Monday. I'm kind of nervous. I guess I'd feel guilty if there were no improvement. Then again, I'd at least know that this was the last thing I could do for my sight then. I feel if there's going to be no improement and I remain totally blind, I will be able to close this chapter sort of. The doctor had some hope that I would regain hand motion vision, which I had in the 1990s, but I am more pessimistic. If I will be able to see colors and very large objects, that would be absolutely great.

Autistic Processing Difference vs. Cognitive Distortion

Today, I experienced a combination of emotional turmoil and sensory overload. Which came first is hard to tell, as I was having oversensitivities already for an hour or so, but the actual reaction, which is either a meltdown or an emotional breakdown, was caused by frustration. Given that both autism and borderline personality disorder come with distress tolerance issues, it is hard knowing which is to blame. It doesn't really matter, except that the two require different approaches. BPD treatment involves skills training in distress tolerance, learning to shift your idea that you can't handle frustration to the idea that you prefer not to get furstrated. Autistic distress tolerance issues involve an increased need for routine and time to adapt to a sudden change in that routine.

When sensory overreactivity comes into the equation, it gets more complicated. If this is assumed to be an emotion regulation or distress tolerance issue, people need to learn to accept that sometimes there's noise they don't like. When people still didn't acknowledge my autism, I was often told that it's other people's right to make noise, as if I was depriving them of that right with my reaction to overload. In autism, however, noise can be painful, and the right approach is to allow the autistic quiet time away from the overloading stimuli.

Now that I write this, I notice that I'm connoting that the treatment I assuem is perceived to be right tfor BPD is really not that right at all. In fact, I believe that you cannot assume that a problem with distress tolerance is ever true unwillingness to accept that things can't happen on your terms all the time, which is what is assumed in personality disorders. There are some people who are truly unwilling to take others' feelings into account, but this si much rarer than the assumption that people are unwilling to take others' feelings into account. I realize that cognitive distortions are not necessarily willful, and that the thought that you can't handle any frustration is not the same as the thought that the world revolves around your need for gratification. What I mean to say, however, is that most people, and especially autistic or otherwise neurodiverse people, do not just think they have difficulties. We genuinely do process stimuli differently, and this means that "can't" is not just a cognitive distortion most of the time. That doesn't mean that autistics doon't have cognitive distortions, too. What it means is that you need to take into account autistics' genuinely different processing style when assessing or treating cognitive distortions. As I was being told for the umpteenth time that my daily living skills deficits are largely due to fear of failure, I begun to wonder whether NTs can truly evr make such a judgment.

Meme: 30 Things About My Invisible Illness

I found this interesting meme for invisible illness week, so here goes.

1. The illness I live with is: undiagnosed other than mental illness (borderline personality disorder).
2. I was diagnosed with it in the year: not diagnosed for my physical symptoms. Diagnosed with BPD in 2013.
3. But I had symptoms since: 2007.
4. The biggest adjustment I’ve had to make is: taking meds everyday.
5. Most people assume: my illness is unreal because it's not diagnosed.
6. The hardest part about mornings are: waking up tired.
7. My favorite medical TV show is: House.
8. A gadget I couldn’t live without is: my mobile Internet modem.
9. The hardest part about nights are: going to sleep on time, pain.
10. Each day I take __ pills & vitamins. (No comments, please): 6.
11. Regarding alternative treatments I: have not tried them but am open to some.
12. If I had to choose between an invisible illness or visible I would choose: visible.
13. Regarding working and career: I don't work, have never worked. I was given disability benefits with no problem based on my visible disability which is the least of my disabilities.
14. People would be surprised to know: that I'm in pain even when I don't show it.
15. The hardest thing to accept about my new reality has been: that I can't live with my husband.
16. Something I never thought I could do with my illness that I did was: take a university-level course.
17. The commercials about my illness: I've never seen/heard any.
18. Something I really miss doing since I was diagnosed is: go for long walks alone.
19. It was really hard to have to give up: my dreams.
20. A new hobby I have taken up since my diagnosis is: crafting.
21. If I could have one day of feeling normal again I would: have a great day with my husband.
22. My illness has taught me: all about stigma.
23. Want to know a secret? One thing people say that gets under my skin is: "It's just stress."
24. But I love it when people: genuinely ask how I am.
25. My favorite motto, scripture, quote that gets me through tough times is: "Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved." - Helen Keller.
26. When someone is diagnosed I’d like to tell them: well I've not been diagnosed with anythign yet except for the BPD which I was just diagnosed with, so I'd like to be on the receiving end of some advice first.
27. Something that has surprised me about living with an illness is: how cruel people can be about judging who is really ill and who isn't.
28. The nicest thing someone did for me when I wasn’t feeling well was: allowing me to whine for a bit.
29. I’m involved with Invisible Illness Week because: I want to teach people about undiagnosed illnesses and mental illness.
30. The fact that you read this list makes me feel: appreciated.

Requirements for the Proper Multiple

Tonight, I was talking on the phone to the organizer of the DID support group I was a member of for two years until I got kicked out for presumably not having DID last May. She guessed my diagnosis correctly, but went on to assume I'd imagined my DID. Well, I'm going to be completely honest here: I have indeed internalized some symptoms that I didn't have before my diagnosis, like the amnesia, but I had known for almost ten years that I had parts when I was diagnosed. Did I imagine the splits when I was fifteen-years-old because I wanted to be crazy, while I'd never heard of DID back then? Well, I don't think so. Of course, whether these emotional states are truly dissociative or not, depends on your perspective. The organizer got to saying incorrectly that BPD and DID have nothing in common. In reality, many people believe DID is BPD with more flair.

The organizer got talking of me quoting books on the furums. Well, that doesn't say anything, does it? Just because I listed the criteria of BPD yesterday, doesn't mean I don't have BPD, right? Apparently, if you want to be authetnic, you're going to have to have made up your own symptom list without any influence from literature. I wonder how this person, who studied psychology at university, did this. Apparently, people who've studied mental disorders in college cannot be diagnosed with a mental disorder themselves.

To air off a bit of steam in a healthy way, I'm going to repost and expand on the list of requirements for the proper DID'er that I compiled after being kicked out of the support group.

1. You can't use jargon like "co-conscious", "inner self helper", etc. if you've not had your diagnoisis forever. This is not supposed to be familiar language to a person just diagnosed.
2. Even if you know you've got parts because you've established a fair amount of communication, you can't walk into your therapist's office saying you experience parts in yourself. In fact, you cannot have obvious dissociative symptoms. According to what I've been told, saying things happen to you but not quite to you, is not appropriate either (which is what I really came into therapy with).
3. You must've gotten into therapy with seemingly irrelevant symptoms like depression, self-harm, etc. Then it's the therapist's duty to figure out you're multiple, but they can't just straight out ask if you experience parts in yourself. On occasion, they can, but you must be completely clueless to the fact that it's not normal.
4. You must have some doubts about your diagnosis, and you must fear that it's all real. If you fear you're fake, you're obviously already a faker.
5. You must not switch too openly or demand switches be acknowledged, cause DID is something that's supposed to be hidden. Keeping the dissociation hidden must be an end in itself. Note that you won't get a diagnosis of DID if the diagnostician hasn't seen you switch.
6. You must want to integrate.
7. You cannot have littles who write properly. You also cannot have littles who write improperly but on the right subforum, cause how are they supposed to know where to write? However, you can't have alterrs write on the main forum either. Why else would there be specific forums for alters?
8. You must recognize just enough of what other DID'ers, who obviously all are not fake, say they experience, but not too much. You must be able to articulate your experiences in your own words, and others determine whether you use your own words.
9. You must have time loss, but how you're supposed to know you have time loss, is unclear. You can't just say you lose time when others come out, cause how do you know? You cannot say you don't remember something when asked, because then obviously you could pretend you forgot. I don't know how a therapist is supposed to realize you lose time if they cannot ask, especially given that implicit memory is often intact in DID, so DID'ers act like they do remember what other identities did.
10. In meetings, you must present as the host (with the birth name) at all times. You must be oriented to the present if you want to participate in meetings. On the other hand, you cannot actually be the person with the birth name, cause that person must've gone to sleep, been gone at an early age or be totally unaware of any others. How are you supposed to come to a DID meeting if you are clueless about other personalities?
11. You must have survived horrific abuse, but in this partiuclar group, you cannot talk about it in meetings. You need to drop the occasional SRA reference to make clear that you are an authetnic survivor.
12. You must validate others' every experience, but you cannot say you can relate.

In short, you're required to have just enough in common with other people in the group to be able to benefit from shared experience, but you cannot recognize too much or it'd be seen as imitating.

Comments on Schema-Focused Therapy

When I was told that I have BPD on Monday, my therapist got talking about maladaptive schemas. She apparently assumed I knew what they are. I had some idea, but did a quck search to find out anyway. They are beliefs about yourself that are maladaptive and that have usually been formed in childhood (although they can be formed later on too) and repeat themselves over and over, thereby influencing your coping mechanisms. The creators of schema therapy list 18 such schemas. The ones that most apply to me are:

• Abandonment/instability: the belief that you will be abandoned by important support people or that the relationship is unreliable or unstable.
• Mistrust/abuse: the belief that other people will aubse, hurt, humiliate, lie to or otherwise take advantage of you.
• Defectiveness/shame: the belief that you are defective, bad, unwanted, inferior or invalid.
• Dependence/independence: perceived inability to handle your everyday responsibilities without lots of help.

That last one is a bit tricky. While I know I'm depenednet, I don't know whether this is entirely due to my beliefs. I mean, overload comes into the equation too. I got a bit pissed when my therapist wrote in my treatment plan that I have a fear of failure and need to realistically learn to take on challenges. As if I'm not trying!

Then my therapist got talking about schema modes. I had some idea of what they were because my former therapist had talked about them when I first disclosed I had parts. Schema modes are the emotional states and coping responses we adopt when faced with life's challenges. I found it interesting that the Schame Therapy Institute says that they can also be seen as dissociative parts. The Institute lists several different schema modes, including the vulnerable child, the punitive parent, the detached protector and of course the healthy adult. I recognized almost all of them, but in fact have more than one of each. Yeah, I'm not going to abandon the DID concept just because it isn't my diagnosis anymore.

Now schema-focused therapy is used to identify and challenge these maladaptive schemas and to reinforce the healthy adult mode. The assessment phase is followed by the change phase, in which clients learn to challenge their schemas and gradually focus shifts from experiential change to behavioral change and preparing for ending therapy. My therapist put in my treatment plan that the current focus would be on learning about origins and continuation of schemas and that I would recognize my coping mechanisms and hopefully be able to shift them in an early stage.

BPD Criteria and Me

Yesterday, I came across someone going through the BPD criteria and describing how he met them. I thought I would do the same, so here goes. My diagnosis was based on DSM-IV-TR criiteria because the Netherlands has not yet implemented DSM5. You need to meet at least five criteria out of nine. I meet at least six and most likely two more.

1. Frantic efforts to avoid real or imagined abandonment. Well, I have a huge fear of abandonment, but my attempts at coping with it tend to lead to actually being abandoned. I often can predict when someone is going to abandon me, but am not sure whether this is a self-fulfilling prophecy, good empathy, or magical thinking.
2. A pattern of unstable and intense interpersonal relationships characterized by alternating between extremes of idealization and devaluation. This is the one criterion I mostly don't recognize. Oh well, I do on occasion push my husband away by saying I don't love him anymore. In this sense, I am the stereotypical "I hate you, don't leave me" type. My husband says his presumption about borderlines is that people fight tooth and nail then five minutes later are cuddling.. I don't do that.
3. Identity disturbance: markedly and persistently unstable self-image or sense of self. This is definitely me. As I pointed out in a previous post, I have no sense of self at all beyond the labels I carry, and in fact am just learning to use my own labels rather than those stuck on me. I tend to have my identity depend on how others see me.
4. Impulsivity in at least two areas that are potentially self-damaging (eg. spending, sex, substance abuse, reckless driving, binge eating). Binge eating an running off into dangerous situations for me (ie. going for walks without watching for traffic). This is not suicidal behavior. Spending when in a hyperactive mood.
5. Recurrent suicidal behavior, gestures, or threats, or self-mutilating behavior. Well, I self-harm and often make suicidal threats. when talking on the phone with my sister about my new BPD diagnosis, she said that mild self-injury like I do does not really count and that I make suicidal threats for attention. Well, I disagree with the "for attention" bit but really it doesn't matter.
6. Affective instability due to a marked reactivity of mood (e.g., intense episodic dysphoria, irritability, or anxiety usually lasting a few hours and only rarely more than a few days). This is so true for me. I have rapidly shifting moods from irritable to anxious to hyper etc. My sister got talking of manic depression, but then moods have to last for a couple of days to weeks. Mine don't. I return to "normal" (ie. slightly depressed and irritable) or another mood episode within a day or so.
7. Chronic feelings of emptiness. I'm not really sure about this one as I have good reason to feel empty, ie. no job or extensive day activities. Then again, the feeling of emptiness can come for no reason and go with another perseveration or impulsive action.
8. Inappropriate, intense anger or difficulty controlling anger (eg. frequent displays of temper, constant anger, recurrent physical fights). I don't physically fight but I do have recurrent temper outbursts. For me, I'm not too sure whether they're meltdowns or outbursts, but I do have them in situations other than when overloaded too.
9. Transient, stress-related paranoid ideation or severe dissociative symptoms. Well, duh. I have both actually. I get terribly paranoid when under stress and obviously have dissociative symptoms, ie. feelings of not being myself, chronic depersonalization and derealization, occasional amnesia.

I have been trying to find DSM5 criteria, but can't. I know a new model for diagnosising personality disorders has been proposed, which bases the diagnosis on a combination of impairments in personality functioning and personality traits, but this model is used for research purposes only.

The Attention-Seeking Theory of BPD

There is lots of stigma surrouding mental illness. Borderline personality disorder is no exception. In fact, it is among the more stigmatized illnesses. Particularly, people believe borderlines act out to gain attention, while there's evidence they do it out of a need to regulate emotions.

I am very thankful that I didn't have the BPD diagnosis when I was first hospitalized in 2007. I had done something that can with good reason be seen as attention-seeking - made a suicidal threat in public -, but I was realy not thinking of the attention I'd get with this. Besides, the kind of attention I got, did matter quite a bit. It is not purely for attention, even though my threat had a signaling function.

In like 2006, before any mental condition had been diagnosed, I was talking to my named support worker at an idependence training facility about my recurrent meltdowns. At one point she concluded that I did it for attention. "So we won't give you attention anymore. Don't think you can do this for attention." In reality, the majority of my meltdowns and acting-out behaviors have the function of either regulating emotions or overwhelming stimuli.

Another thing with the attention-seeking theory is that nothing really is wrong with attention-seeking. Of course, having a meltdown for attention is not appropriate, but it is not like ignoring the person is going to make them better. It will just lead to them giving up and developing learned helplessness. Rather, professionals and others need to help the borderline by providing the right kind of attention before behavior escalates. I strongly disagree with the ida that borderlines need to be left to solve their own problems. We lack skills in emotion regulation, and need to actually be taught these skills. When other conditions, like autism, come into the equation, it gets more complicated, because we truly do not have the ability to process ordinaryy stimuli. I, for one, have a hard time communicating when overwhelmed, so I can't get across my needs in an appropriate manner. It is further reinforcing learned helplnessness to just ignore me in such a state.

Ramblings on Self-Image and Diagnosis

This afternoon, I was discussing y treatment plan with my psychologist. I heard her saying something about diagnosis and treatment being complicated by a combination of autism with axis II symptomatology. "Axis II," I thought, "that's personality disorders. Have they finally gotten to diagnose me as BPD?" And yes, they have. And instantly the DID and PTSD diagnoses went out the window. Not only that, but BPD, not Asperger's, is my "main diagnosis" now.

What does this mean? I anticipated it for a long time. In fact, I've always doubted the diagnosis of DID. When initially diagnosed, I was too overwhelmed by some of the consulting psychologist's questions to answer them with the nuance they required. Like, the psychologist asked whether we are aware of what happens when another alter is out. I said no, but the real truth is that we could not have known, since if we lost time, we would only find evidence later and not know that an alter had been out unless we'd had soome awareness of that alter.

I have a very unstable self-image, which goes with both DID and BPD. In addition, I need concrete qualifiers for myself, which I theorize could be an autistic feature. This gets me to identify myself not with abstract characteristics like creative, intelligent or whatever, but with the labels I've been given. I've gotten better over the past year or so at identifying myself with neutral labels like crafter and blogger.

At the same time, I still do have characteristics that are more abstract. I am not just an autistic, a crafter and a woman. I am not just a dissociator or a borderline. Yet what I am in terms of these labels, fundamentally impacts how people see my characteristics. Like, borderlines are generally assumed to be manipulative attention-seekers. If I'm seen as manipulative when a vulnerable alter is out, for example, that means my needs won't be listened to. In contrast if I'm seen as vulnerable when I'm manipulating, I won't unlearn to manipulate. Furthermore, my poor self-image may not alter the core of my mental problems - whether that be a drive to manipulate or emotional vulnerability or both or soomething else entirely -, but it sure alters the way I perceive this core.

Undiagnosed Symptoms Are Just as Real #IIWK13

Just a few weeks ago, I found out about this year's Invisible Illness Week, which starts today. I already heard of it years ago, but never quite took the time to write for it. Until now. Today, I want to share my experience to get awareness of what invisible illness is like, and especially, how it can take years to get a proper diagnosis (and hopefully treatment).

I have suffered from my symptoms, which include fatigue, random aches and gastrointestinal symptoms since 2007. I went to my doctor for the first time in late 2007, having had diarrhea on and off for half a year. She chalked it up to a stomach bug. Then, when I got it through to her that it'd been going on for months, I was examined and the doctor found I was actually constipated. Well, nice. Drink lots of fluids, eat lots of fiber, but the symptoms did not go away. I was eventually put on a laxative, which worked to some extent but gave me bad cramps.

For the fatigue, I got various blood tests and these revealed iron deficiency, then B12 deficiency, then nothing. I was told that the random aches were just stress. Not that this makes them go away, but oh well.

My symptoms are still there, and I don't have a diagnosis, although I self-diagnose as having irritable bowel syndrome, because I honestly don't buy into the constipation theory. I feel out of place in the chronic illness community not having a diagnosis, and of course I want my symptoms to be something simple that isn't a chronic illness. Then again, it's not like symptoms are less real just because they don't have a label to them. Many people, like myself, take months to years to go see doctor, longer to see the right doctor, and maybe I'll never find out what's really going on with me or get adequate treatment. Maybe I will at some point. I hope so.

The Childhood Bipolar Controversy Reviewed

Bipolar disorder in children is controversial. It didn't use to be diagnosed as often as it is now, especially in the U.S., and more atypical symptosm are suggested to be bipolar. In the journal Child and Adolescent Mental Health, Boris Birmaher reviewed the literature surrounding this controversy. It's an interesting article, viewing the controversy from all sides.

Birmaher starts by describing the diffiuclties diagnosing manic, hypomanic and depressive episodes in children and adolescents. Particularly, it is hard to distinguish symptoms of (hypo)mania from normal episodes of increased activity or from ADHD. Depressed symptoms are also hard to diagnose because children do not always feel or look depressed all the time. Adolescents experiece more atypical symptoms (increased sleep and appetite and weight gain) than adults do. Birmaher discusses whether onepisodic mania can be seen as bipolar.

He fortunately also shreds the idea that irritability only is bipolar. It isn't. In fact, it is not severe mood dysregulation (also known as disruptive mood dysregulation disorder) eitehr, which surprised me. Irritability only is more indicative of ADHD or disruptive behavior disorders than of bipolar or SMD. Elation only, also, is not common in childhood or adolescent bipolar. More likely, patients experience both irritability and mood elation.

Birmaher is quite clear that pediatric bipolar disorder exists. The prevalence is around 2%, with just over 1% of children and adolescents presenting with bipolar I. For some perspective, Levorich et al. (2007) show that as many as half of adult bipolar patients in their study reported onset in childhood (14%) or adolescence (36%).

Birmaher is not a bipolar proponent, in the sense that he thinks atypical symptoms warrant a diagnosis of BP. He makes it quite clear that more research is needed into the risk factors for converting from atypical or subsyndromal bipolar-like symptoms into full-blown bipolar in children and adolescents. It looks like family history of bipolar is one such factor. Levorich et al (2007) found that, the earlier the onset of bipolar disorder, the more likely the patients were to have a parental history of bipolar or depressive disorders.

Levorich et al. (2007) particularly studied prognosis in adults with bipolar disorder, comparing those with (retrospectively reported) childhood or adolescent onset bipolar to those with onset in adulthood. They found that, the earlier the onset of the disorder, the more likely patients were to suffer from dysphoric (irritable) rather than euphoric mania and the more likely they were to have comorbid anxiety and drug abuse. In addition, the researchers tracked all participants' mood over a year's period. This showed that those with early onset bipolar had more depressed episodes, more severe manic and depressive symptoms and fewer good days in a year than those whose bipolar started in adulthood. For these and other reasons, Levorich et al. advocate an active ruling in or outo f bipolar d isorder in children and adolescents, rather than it being considered a last resort diagnosis.

References

Birmaher B (2013), Bipolar Disorder in Children and Adolescents. Child and Adolescent Mental Health, 18: 140-148. DOI: 10.1111/camh.12021.

Levorich GS, Post RM, Keck PE, Altshuler LL, Frye MA, Kupka RW, Nolen WA, Suppes T, McElroy SL, Grunze H, Denicoff K, Moravec MKM, & Luckenbaugh D (2007), The Poor Prognosis of Childhood-Onset Bipolar Disorder. Journal of Pediatrics, the, 150(5):485-490. DOI: 10.1016/j.jpeds.2006.10.070.

Autism and Justified Anger

On my autism treatment and acceptance, Autisticook commented by saying that anger in an autistic is often justified. She compared it to the situation where a wheelchiar user gets angry because they are faced with yet another two-step staircase that wasn't necessary and where nobody thought of installing a ramp. This made me think: are we overpathologizing anger in people with developmental disabilities (and mental illness)? Are we incorrectly assuming that anger is part of the disorder, while it's just a response to a lack of accommodations? This is obviously not a scientific discussion, as what is a reasonable accommodation depends on your perspective.

I just a few days ago heard about cognitive accessibility, where people accommodate their language, for exxample, for understanding by people with learning difficulties. I'm trying to find an accessible and understandable explanation of this, but can't seem to find one. What I understan dit to mean, includes for example using simple, straightfoward language. With autistic people, you may need to refrain from using figures of speech, for example.

What if you were dropped in a country where you didn't speak the language and everyone refused to speak English? Would you get angry? Quite likely you would. Now understand autism as communicating in a different language, too. Is it strange then that the autistic gets angry when you routinely refuse to make an effort to speak their language?

Autism is not just a communication disability. It's in a way a sensory disability, too. Imagine, again, being in that foreign country and everyone shouting at you for whatever reason. They also randomly shine a flashlight at your eyes for whatever reason. In addition, this country is rich on insects, and they crawl over your body all the time. Would you get frustrated? Sure you would!

We do not medicate wheelchair users for getting frustrated at the umpteenth staircase. You would not want to be put on medication if you were in the aforementioed country. So why do we medicate autistics who are irritable? It's probably because accommodating them requires a radical paradigm shift in what we always thought access was all about. Is it a more radical shift than the shift towards wheelchiar accessibility? I am not sure.

Let God Make Something of Your Life

I just read this devotional on following Jesus in a world that expects leadership. We need to let Jesus make something of our lives and to follow His example.

At first, I was a bit annoyed at the presumption that we do not need to make something of our lives, but let Jesus do so. Are we going back to blaming God for our choices and everything that happens to us? But then I read on and saw what following means: accepting Jesus as our leader and following His example. Of course, the author of this devotional includes all the worthwhile things Jesus did. Some atheists around me are going to point out that Jesus set a poor example if we have to believe every word of the Bible literally. I don't take the Bible literally, and I believe Jesus was a great leader in His time. Being both human and God, He lived a life on Earth influenced by the times. He did things we disapprove of too during His human life, and the authors of the Bible (FYI: I do not believe God wrote the Bible, He just inspired it) made their own interpretatios of His actions. Those of us, includign myself, who understand God to be loving and graceful, need to extent the same to other humans. We take Jesus as an example, not in every little thing He did, but in the greater values that He promoted. That's where I disagree with the "follow the leader" analogy.

We also must keep in contact with God thorugh Jesus, and let Him make something of our lives. As I said, this is not a passive waiting process. It is active: God has a purpose for us but we need to let Him work in us and follow what we learn that way to make this happen. We need to actively accept the gift of God, not passively assume it will unfold itself someday.

Family Offered $86K to Take Son out of School, Waive Complaints of Abuse

I don't normally use trigger warnigns but this post sure requires one for graphic descriptions of abuse.

@mamabegood on Twitter just posted a news story that says that a family was offered $86K to keep their autistic son out of public school. That's what the title reads. The actual story is much worse and includes abuse at the hands of a teacher.

This story, unfortunately, is not an isolated case. Many children and adults with autism get abused by professionals in whose care they've been placed in one respect or another. The details of the abuse in thsi particular story remind me of a lot of "old-school" ABA therapy, where aversives were presumed to be the single most important factor in its success. David Swanson, the young autistic in this story, was force-fed by a teacher because he refused to eat with a metal rather than plastic fork due to oral sensitivity. Now imagine if I forced a sharp object into your mouth. This would sure be considered abuse. If you then vomited and I'd force you to eat your own vomit, that'd make the abuse even worse.

Honestly, even though this news report is generally okay, it's symptomatic of something I can't quite pin down that the most focus is put on the money offered to David's mother to take her son out of school. Is it that abuse of autistics is commonly excused because "they" (autistics) are difficult, aggressive maybe, hard-to-parent often, and many times won't meet up to the expectations of others? Please, if you've made it to this point in my post, let's join Mama Be Good on Facebook in a moment of silence. Thank you for reading.

Healing Quotes: Maya Angelou on Bitterness and Anger

"Bitterness is like cancer. It eats upon the host. But anger is like fire. It burns it all clean." - Maya Angelou

I have always liked inspirational quotes, although I am getting a bit weary now that they're shared on Facebook all over the place without even as much as a personal commetn. I therefore want to write about thsi quote and express how it affects me.

Bitterness and anger are both emotions that come when something happens that we don't like and that we feel we don't deserve. But while bitterness is a passive emotion, one that gets people stuck in their feeling of beint treated unfairly, anger is an active emotion. It drives people to actually do something about the injustice done to them or about the consequences of this injustice. An example of this can be seen in Down with Dat's use of anger to fuel activism.

Anger really isn't the negative emotion we often think of, the emotion that paralyzes people into being consumed with self-pity. That is bitterness. Bitterness may actually also be like depression (not the clinical kind, but the everyday depression most people experience at times) rather than just anger, and, while we don't usually choose to be depressed, we can change our train of thought to convert it into anger and action.

Autism and Selective Mutism Symptoms

I have not yet finised reding or even scanning Aspergirls, but I know that in it is a part on mutism in (Asperger's) autistics. I also recall that in 2003 or 2004, I was on an autism discussion board and selective mutism was regularly discussed. Not necessairly in the context of autistic kids or adults, but as a similar disorder.

Indeed, many autistics, myself included, have symptoms that could minmic selective mutism, where a person is able to speak in certain situations but not in others. A person cannot technically be diagnosed with both selective mutism and an autistic spectrum disorder, since when a person is autistic, their selective mutism symptoms are chalked up to that.

I do not know what the literature says about this, so I can only speak for myself, but I often get "locked up inside" out of anxiety. For example, in high school, when my tutor raised topics that hit too close to home, I shut down. However, I can also experience mutism when my thoughts get interrupted or I'm overloaded. Then, my brain shuts down in another respect.

So what can parents and teachers do about selective mutism in an autistic? What they did to me, both my parents and my teachers, was force me to speak. I remember one night when I was about sixteen, being made to stay up until I'd told my parents a certain rather personal thing. Let me say, thhis is not the way to go. Anxiety may play a factor in selective mutism symptoms. When you use force, this anxiety will only get worse. Also, if your child does not trust you enough to talk to about personal issues, that's something to work on first.

When the root of the mutism is not anxiety, still, force will not work. When a person is overloaded, the words and actions you use to make them speak, will often only overwhelm them more. Let them quietly think for a bit instead. You might want to ask what the autistic needs - quiet time to process, an alternative communication modality, etc. -, and the person may be able to indicate this in a way even if they don't use words. Sometimes, asking questions will help, at least with me, but sometimes, this will distract me only further from what I wanted to say.

My Taste in Music

While browsing Google+ blogging communities, I came across Amber Parnell's glimpse into her music library. This synopsis of Amber's musical taste is definitely worth a read. I think, in fact, that I'm going to copy her idea and post about my musical taste.

First, I don't have a music library. Or rather, I do have some music on my PC, but that is not nearly as varied as my musical taste is. I don't have an MP3 player or iTunes. Actually, most music I listen to I either listen on Last.fm (when it works) or more often on YouTube.

My musical taste is quite varied as I said. I like mostly folk. At first, this consisted of the likes of the Dubliners and the Pogues. Now, I listen to quite a diverse number of singers/songwriters. Examples include Cara Dillon, Kyle Carey and Karine Polwart.

I also listen to comtemporary christian music, particularly that sung by females - I guess I like female artists more than males in general. My favorite song in the CCM genre would have to be Natalie Grant's Held. Other singers in this genre that I regularly listen to are Bethany Dillon, Britt Nicle and most recently discovered Karyn Williams. Examples of male singers in this genre I actually like are Chris Rice and Ceili Rain.

Other than specific genres that I'm into, I like a huge amoutn of bands without particularly liking the genre. For example, I like John Denver but am not specifically into country. I also listen to 21st-century pop sometimes. Particularly, one of my alters is into the this, so I've actually liked Blue October, Amy MacDonald and Beyonce. I don't know if I truly actually like them, excet for Amy MacDonald, or if I "like" them because part of me wants to be trendy.

Autism, Special Interests, and Elevated Moods

Many years ago, I read an article on Suite101 or About.com or the like that discussed similarities between Asperger's Syndrome and bipolar disorder. The parent who wrote the article described her son's mood swings from elated to depressed. However, she realized that these mood swings were related to whether the son could engage in some special interest.

I find the same thing happen to me, but in my case, it also ties in with the dissociative or emotion dysregulation symptoms. I find that when I'm in a particular personality state, I engage in a certain special interest a lot more than when I'm in another state. For example, Clarissa is my blogger part, who is behind most of the posts on this blog. Annemiek is my crafter. And I at this point can't think of anyone else.

Getting back to mood swings, I must say that I get very elated when I engage in a particular interest for a certain period of time. I uttered the phrase that I would've been manic if I experienced this (mania) at all. In a way, this is extremely inappropriate and comparable to when a currently mentally healthy person talks about "going all OCD". I in no way want to say I suffer from bipolar (hypo)mania, but these mood swings do get problematic at times.

For example, last night I didn't sleep at all. I spent around $80 on useless online services without even bothering to read the not-so-fine print that clearly said these services would not be working for me. I actually took a PRN Phenergan at 2:00 AM, before I went ont he shopping spree, but swung right through it. Phenergan, for those not familiar with it, is a strong tranquilizer or low-potency neuroleptic. I'm now relatively calm again, so again I in no way mean to compare myself to people who have these experiences for weeks on end, but I do see actually how this could become a problem.

So, should autism parents limit their children's special interests in order to prvent this from happening. I don't think this is universally the case, but parents must teach their children about time and money management. I, having been pretty stingy as a child and teen, never really had to learn about this. I always had enough money on my hands anyway. I actually must say I have no clue about budgeting, and really don't know whether I need to learn it yet. I guess so.

Autism Treatment and Acceptance Are Not Mutually Exclusive

Oftentimes, there seems to be a dichtomy between those autism advocates who want treatment, and those who want the autistic to be accepted. Usually, parents of people with more severe autistic symptoms and/or intellectual disability want their autistic to be cured, while those autistics with more intellectual and communicative abilities advocate acceptance. This is not always the case, of course, but often it is. Therefore, it is somewhat understandable that autism parents tell autistics that we are not like their child.

What I want to discuss in this post, however, is whether treatment and acceptance are truly mutually exclusive. Of course, a cure that will fundamentally change a perosn's information processing, is contradictory to accepting that processing difference. However, at this point there is no such cure, like genetic engineering or neurological rewiring, which is what it would take to make autism go away entirely.

Do these autism parents who advocate cure, truly want their child's every autism symptom to go away/ I do not know, but it is possible that what they truly want to go away are certain aspects of autism that are debilitating to the child. I do not disagree with this. I, too, take medication to help curb my irritability, for example.

Truly, would you want your child's autism to go away if it made them a very much in their interest invested professor, if a quirky one? It is known that Temple Grandin is autistic, and yet she reached Ph.D. status. If I have to believe her own statements, this is largely due to her special interest and her good ability to empathize with animals. The same likely goes for other "higher-functioning" autistics, but then again these are discredited for disagreeing with the curebies.

Now I get to acceptance. As I wrote in a previous post, accepting the person is different ffrom accepting their every behavior. Hardly any autistic would want themselves or another autistic to be continually aggressive or self-injurious. Also, most parents tht I've met online who advocate treatment for their children's autism, actually love their children to pieces. There are a few who wish their autistic child were taken back by the changelings, so to speak, but these are rare.

So really, is it hypocritical to want treatment for autism if you want to be part of the autistic acceptance movement. While a complete eradication of autism, and thereby autistics, is contrry to acceptance, treatment for the most severe and disabling symptoms, is absolutely not. And this is where views often clash: those with more severely autistic children, want to pretend that treatment will eradicate all autism, and they at the same time pretend that those who disagree, are not autistic at all. Well, fine with me. If you want your child to be like me in terms of functioning, that's okay, but that is not curing them.

ETA: with my sentence about my understanding that parents want their kids to function like me, I didn't mean to place myself above autistics who appear to be "lower-functioning". I realize that's how it comes across. I do want to say that I understand, for example, that parents want their children to have a meaningful way of communicating or have minimal aggressive or self-injurious behavior. I do not feel that any autistic should be forced into neurotypical appearance.

High-Functioning vs. Low-Functioning Autism: Some Common Assumptions

This post was adapted from a post I originally wrote in 2007 and which I've since crossposted to various old blogs of mine. I still like it though.

Autism is a spectrum disorder. There are many differences between individual autistics. Where it gets tricky, however, is when we categorize autistics into specific boxes that are mutually exclusive. This is what happens when we speak of "high-functioning" and "low-functioning" autism. Below, I'm going to write up a list of assumptions about the LFA/HFA divide, and share my comments.

1. Low-functioning means having an IQ below 70. Well, this is one of several pretty official distinctions being made. The problem is that it's often hard to determine IQ in people with autism: some people may seem high-functioning at first, but their IQ drops as they age cause of increased developmental demands - something that is extremely common in preemies (autistic or not). Others' IQ jumps by sometimes as many as 50 points as they learn to use a communication modality that others understand. Here in the Netherlands, autistics whose IQ can be assessed as being in the intellectually disabled range, are considered autistic as well as intellectually disabled, so they essentially have two disabilities that may influence each other and each influence the person's functioning.
2. Low-functioning means non-verbal. This is the other kind of official definition. The only thing it omits to say, is that non-verbal does not necessarily mean unable to communicate. Speech, after all, may not be communication (I sometimes hate it when people assume that everything that comes out of my mouth is intended as it comes out), and communication does not need to mean speech.
3. Autistics will always function at the same level regardless of circumstances. I hate this assumption, and have always hated it, whether you relate it to autism or not - I hated it years before I was labeled autistic or even suspected I was on the spectrum. In my own experience, this prejudice comes in the form of "You're so intelligent, so ..." statements. Some people who make these assumptions, can simply be directed to Stephanie Tolan's article on asynchronous development, but even those who know about this, tend to have difficulty grasping the concept that I do not always function at the same level. I still have a lot of difficulty grasping this concept myself: that, when I'm overwhelmed, I don't have skills that I have when I'm in a quiet state, most prominently communication abilities. So, when someone sees me here on the computer typing out a review on the HFA/LFA distinction, they may assume I'm very high-functioning, but you wouldn't guess so when you'd see me when I'm overwhelmed.
4. Low-functioning means severely autistic. Well, number of symptoms and functioning level in either of the two relatively official respects, are quite different. In fact, some people with a severe intellectual disability lack the cognitive ability to exhibit some autistic symptoms, such as routines. So are they "low-functioning" because of their IQ, or are they "high-functioning" because they are not severely autistic?
5. High-functioning individuals do not exhibit certain behaviors, such as self-injury or aggression. So, when someone does exhibit these behaviors, they must be low-functioning? I'm not proud of this, but this belief makes me pretty low-functioning. Often, however, it's used the other way around, in that people who meet someone's stereotype of "high-functioning" (eg. the ability to disagree with Autism Speaks in a way that they can read/listen to), is discredited for certainly not having serious problems. This assumption is not only wrong, it is dangerous to autistic people's wellbeing and health.
6. High-functioning autistics live independently, while low-functioning autistics don't. Many factors contribute to an autistic's ability to live independently. Of course, an intellectual or communicative disability may make it harder, but so does severe executive dysfunction or the risk of certain behavior problems or mental health issues. The concept of independent living is also oftentimes wrongly perceived as black-or-white: some people live independently, but do get home support, or they live in settings with 24-hour assistance but still have their own apartment, or they live with their parents till age 30.

Please note that, again, I am not saying that autistic individuals do not differ from person to person. I am not even saying that there are not various cotinuums of funcitoning. There are, however, so many that it is entirely arbitrary to draw a line between the HFA category and the LFA category. I hope I've made this clear in this post.