Tag Archives: Blindness

If I’m Not Autistic, What Am I?

My psychologist removed my autism diagnosis, which I’d been first given in 2007, last summer. After a long process of negotiations, she decided to diagnose me with dependent personality disorder, borderline personality disorder traits and depressive disorder NOS. I strongly disagree particularly with the DPD label, but more importantly, I want my autism diagnosis back. I requested an independent second opinion, which I’ll be getting the first appointment for this Thursday. Just this evening, I told a leader of an autism group in the Netherlands that I’d be closing the autism chapter if the second opinion provider agreed i’m not autistic after all. Then I’d definitively consider myself, well, what? I’ve rarely used the word “allistic”, which is someone who isn’t autistic. I feel that all people with neurodevelopmental conditions essentially fall on the same spectrum. Many autistics disagree and would not allow, say, a person with ADHD into their community. Indeed, if I’m not autistic, I’m allistic, period.

There used to be some concept of “cousins” in the autistic community, which included people with other neurological or neurodevelopmental differences, such as ADHD, Tourette Syndrome or hydrocephalus. Maybe I could consider myself a “cousin”, since I was at one point diagnosed with hydrocephalus and that’s a far more hard-wired diagnosis than is autism. So I’d be an allistic cousin to the autistic comunity. The concept of “cousins”, however, is barely accepted anymore.

Besides, it’s not just about community. It’s about identity. If I’m told that after all I’m not autistic, a vital part of my identity is being destroyed. Someone compared it to losing their status as an animal lover. It’s far worse. It’s like being told I’m not blind – there is another reason I’m unable to see, but that’s not called blindness. Besides, there’s no ICD-10 or ICD-11 or where are we these days code for it. This is analogous to what my psychologist has done with respect to my autism: it isn’t there, because there is another reason I have cognitive and sensory and social-communicative difficulties, but there’s no DSM-IV code for that.

It affects services, too. If I lost my status as a blind person, I would no longer be allowed to use my white cane. I would no longer be provided with reading materials in accessible formats. I would no longer have access to services for the blind. If there’s no ICD-whatever code for explaining my lack of sight, there won’t be any other way to gain access to these accommodations or supports. I can imagine this is in part the reality for people with conversion disorder manifesting as blindness, since some service and accessible reading material providers ask for verification of the “physical basis” of one’s blindness.

If I lose my status as an autistic person and there’s no diagnosis to replace it with, I’ll not be able to access services that take into account my cognitive, sensory and social-communicative difficulties. In fact, my psychologist has already voiced her disagreement with me applying for day activities for people with traumatic or acquired brain injury. She says I have “congenital brain injury”. At least, that was her reason for removing my autism diagnosis. Since “congenital brain injury” isn’t acquired or traumatic brain injury, I won’t qualify for services for that. Since in fact “congenital brain injury” does not exist in the diagnostic handbooks, there is no help for it. It’s worse even than conversion blindness, since that can be treated somehow.

Now imagine that I, who clealry has an eye condition causing blindness, were told I had conversion blindness for lack of a better diagnosis. That’s about what it feels like being diagnosed with dependent personality disorder as a clearly neurodivergent person.

It could be worse. I could be told I’m not neurodivergent at all. This would go beyond saying I am an unfortunate case of falling between the cracks with my useless diagnosis of “congenital brain injury”. To use the blindness analogy again, this’d be like being told I am fully sighted, yet only believe I’m blind for attention, because I don’t accept my status as a short person, or whatever nonsense claim people have made as to why I erroneously believe I’m neurodivergent. This is a possible outcome of my second opinion too. After all, though I have hydrocephalus, there is no proof as per a neuropsychological evaluation that this has caused me lasting impairments. My psychologist is of this opinion to an extent and so are my parents and sister, believing I have problems because I think I do.

Back to my autism diagnosis or the lack thereof. Some people say you’re autstic if you’re autistic no matter how many professionals say you are not. They say that, if support tailored to autistics, including being part of the autistic community, works, you must be autistic. With my poor self-image, I’m not so sure this would be the case for me.

Adaptations I’ve Used for My Disabilities

A few months ago, I wrote a post in which I described my limitations in as much detail as I could. I had just agreed to settle on a brain injury diagnosis rather than autism, so had to figure myself out all over again. Since then, that diagnosis was revised several more times and I finally decided to want a second opinion. I want answers to what’s going on with me.

The good point of that post I wrote, however, is that I felt free to describe my limitations in a non-judgmental way. As a follow-up, I am going to write a post today on the adaptations I’ve used throughout my life for dealing with these limitations.

The first adaptations I remember using, when I was about four, were not for what most people think of as my primary disability, ie. blindness. When I was four or five, I had to have my left foot in a cast to prevent my heel cord from becoming too short. This problem is common in children wth motor difficulties like cerebral palsy, though it occasionally happens to children with other neurological conditions too. I also had limited strength in my hands, so I got to use scissors which bounce back automatically. When I finally got to use a Braille typewriter, it had lengthened keys which were easier to press, too.

When I went to the school for the visually impaired at the end of Kindergarten, I was introduced to large print adn later Braille. I started learning Braille when I was seven-years-old. Because I was a print reader before I became a Braille reader, I had an advantage and a disadvantage. I could already read and knew my letters, but Braille wasn’t my first written language. I didn’t become truly proficient at Braille till I was around twelve and still can’t read it as fast as some blind people.

Apparently, around age seven, I had enough vision to ride a bike. I didn’t have the balance though. I still don’t know whether it was my parents being pushy or I truly had enough vision to safely ride a bike, but in any case I got a large trike paid for through the city department of disability services. My parents transported it to our new city when we moved when I was nine, even though this required approval from the authorities. I used the tricycle for about five years, until I became too blind to safely ride it even for purely leisurely purposes in my quiet neighborhood.

By the time I transferred to the school for the blind at age nine, I no longer needed most adaptations for my motor difficulties. I could use a regular Braille typewriter and in fourth grade, we weren’t crafting anymore anyway, so no scissors. I had also by this time become a full-time Braille user, though particularly in fifth and sixth grade I still peeked at the large print atlas every now and again. I got a handheld magnifier for my birthday or St. Nicholas around that time, because without it I couldn’t use the atlas. I had a large collection of tactile maps too, which I also loved.

When I was eleven, I got my first laptop with Braille display. I had occasionally used my parents’ computer before then, but had by this time long been too blind to even see very large letters on the screen. I tried for a bit to use a screen magnifier on the school computer, but I quickly learned to use Braille and syntehtic speech on my own computer.

I also had a white cane, of course. I started cane travel lessons when I was around seven, but rarely used my cane until I was fourteen. Then, when I had entered eighth grade in mainstream education, I had realized I was going to look blind compared to all fully sighted fellow students anyway so I’d better use a cane.

I went through school using mostly my computer for learning. We had a number of tactile educational materials, but I rarely used these. I hated tactile drawings, because I had an extremely hard time figuring them out.

In college and university, I used my computer with Braille display only. I also had gotten a scanner, so that I could scan books that weren’t available in accessible formats. A few years ago, I bought myself an OpticBook scanner that is especially good for scanning books. I rarely used it though, because eBooks became accessible to screen reader users in like 2013. I also rediscovered the library for the blind and last summer, like I’ve said, became Bookshare member.

I never used adaptations for cognitive impairments even after my autism diagnosis. I wanted to learn to use some and I still badly want to get a weighted blanket someday. I also am currently exploring adaptations for my fine motor issues. Because I felt more secure this way, I did for a while use a mobility cane. However, it was too long, then when someone had sawn off a piece it was too short. Also, it isn’t safe to use a mobility cane for me without also using my white cane and because of limited use of my left hand, I can’t use both. The adaptive equipment store does sell mobility canes with the white cane look, but these only have the advantage of making one recognizable as blind. They can’t be used for feeling around for obstacles. I could of course use a mobility cane with the white cane look in place of my white cane when walking sighted guide. However, I have learned to use my white cane for some support. The main reason I choose to use my white cane rather than a mobility cane with white cane look, however, is that I feel too self-conscious. I feel that I’m not mobility-impaired enough for this. I do wonder whether I’d feel more confident walking if I had a mobility cane, but I fear people will judge me for exaggerating my disability.

Blindness Isn’t Black or White

The Foundation Fighting Blindness has launched acontroversial campaign encouraging sighted people to blindfold themselves for a short time to see what it’s like to be blind. Most blind people I know are vehemently opposed to this idea. I am no exception. It’s however not because simulation is wrong by definition.

First, simulating disability is often seen as fundamentally wrong by the disabled. The reason is that you don’t know what it’s like to live your entire life or the rest of your life with a disability by putting on a blindfold, sitting in a wheelchair or trying out other disability simulations. You will be able to take off your simulated disability when you’re done with it, after all.

Though I mostly agree with this, I can see how simulation can be useful for relatives of someone with a disability to learn to understand the alternative ways in which the disabled accomplish everyday tasks. They will also experience, though to a lesser degree, the obstacles people with disabilities encounter as they use these alternative techniques. For example, when I was at my country’s blindness rehabilitation center in 2005, my parents tried to put jelly on a slice of bread while blindfolded. My mother and I made a mess, while my father didn’t. Then again, he noticed as he took off his blindfold that he’d placed the can of jelly, the butter, the bread etc. all around his own plate. In a similar way, sitting in a wheelchair can help able-bodied people understand the need for ramps.

However, by experiencing “disability” for a short while, you will not experience the systemic societal oppression that comes with being in the minority position of being disabled. You will not experience the psychological and social impacts of disability. You will not have time to adjust, but then again, you won’t need to have time to adjust.

Another problem specifically with blindfolding to see what it’s like to be blind, is that blindness comes in many forms. (I’m sure there are analogous explanations of this for other disabilities. For example, most wheelchair users can walk a short distance. However, since blindness is what I know best, I’ll go with that.) Blindness, in other words, isn’t black-or-white. Only a small percentage of people who are blind have always been totally blind (with no light perception) or went totally blind (with no light perception) in an instant at one point in their lives.

Most people have at least some viison, whether that be useful or not. Many people who say they are totally blind, in fact have light perception only. Light perception is the ability to tell whether it’s dark or light. In its most limited form, it is the ability to tell the difference between daylight and nighttime. Light projection is the ability to tell where the light comes from, such as where there are windows in a room. Since both light perception and light projection are measured with the eye doctor’s flashlight, not large sources of light like windows, it is possible to test as having light perception only when you really have some light projection. I am an example of this. When I went to the blindness rehabilitation center, they were initially informed by my doctor that I am totally blind, since in the doctor’s opinion I had no functional vision. I have heard from many people who have experienced true light perception only that indeed this would be the point at which they’d consider themselves completely funcitonally blind. However, this is the reason there’s a difference between functional vision and vision as measured by an ophthalmologist.

However, I always say that I am “blind.” This led to a particularly frustrating experience one time in 2010 or 2011, when I had to undergo oral surgery. One of the doctors or assistants said that I didn’t need a sheet over my eyes because I’m blind anyway. Guess what? Even those with the most limited forms of light perception can be bothered by a bright dentist’s light shining right into their eyes.

Then I didn’t even mention people who are judged to be functionally blind but who do have some very limited but useable vision. I was in this group from age eight till age eighteen. I had very limited color, form and object perception, but my parents and even psychologists working with the blind said I needed to accept the fact that I am blind. Maybe I wouldn’t have had that much trouble with it had they not constantly suggested that blind meant no useable vision. Visual techniques may not be the most efficient in many situations, but that doesn’t mean the vision isn’t there.

Describing My Limitations

Many years ago, an online friend of mine was part of a disabled people’s ministry that explored what it meant to be disabled. She wanted to get me involved too, but at that point, the ministry was closing down, so she started her own discussion group. The first question we got was to introduce ourselves without mentioning our disabilities. I don’t know whether I did this with my last post, but I don’t want to do things over again. The second question was to describe your limitations. We could mention diagnoses, but the focus was on how disability limited us. I am now trying to answer this question in this post.

My first disability is blindness from retinopathy of prematurity. My vision is measured as light perception only. Technically, this means i can see the eye doctor’s flashlight when it’s brought into my visual field but I cannot tell what direction it comes from. This commonly leads to the misconception that people whose vision is measured as light perception only, are essentially completely blind. In truth, I can orient to light – just not the eye doctor’s flashlight. I can visually locate windows and see whether a light is on or off. With that last one, I do often need to check twice to be sure and I often find it easier to memorize the position of the switch than to depend on my vision.

Then it gets hard. I used to have a diagnosis of autism, but since that was removed, I now have to describe my limitations without depending on a catch-all label. Let me try. I have sensory processing difficulties. I am oversensitive to sounds and textures. With regards to taste, I am a sensory seeker, in that I crave spicy food. I can also be a seeker in the vestibular sense. I used to love to swing and when the movement therapist at my old institution had a trampoline set up, I was over the moon.

I may also have auditory processing issues. I have trouble understanding speech sometimes, especially in a crowded place. I haven’t had a hearing test in forever, so can’t be sure that it’s processing and not my hearing itself. Sometimes though, I do hear something, ask the other person to repeat it and then before they repeat themselves, I process what was said.

I also have social difficulties. I can keep a reasonably normal-sounding conversation but it takes me a lot of energy. I have trouble with reciprocity, in that soetimes all I do is listen and sometimes all I do is talk. I can’t do group conversations, because I get overwhelmed.

I have mild communication issues too. Sometimes, when anxious or overwhelmed, I go mute or stutter or have trouble finding the right words. I remember going mute in high school too, but not sure whether I had these issues before that. It could be anxiety, since I also have that. My psychologist is considering diagnosing me with generalized anxiety disorder, which basically means you worry to an extreme degree about all sorts of things. There are also additional symptoms, like difficulty concentrating, physical tension, etc.

I have cognitive issues too. This may sound stupid, because I have a high IQ. Maybe executive dysfunction is a better word. I appear lazy sometimes, because I get easily overwhelmed by relatively complex tasks and then end up not doing them at all. I also feel anxiety when people ask me to do things, but when I take the initiative, I feel more confident. I wrote earlier that this could be pathological demand avoidance. However, when for instance my husband asks me to do something, i’m fine with it unless it’s a complex task.

Then I have emotion regulation difficulties. I used to have a diagnosis of borderline personalty disorder, but that can’t co-exist with the brain injury I suffered from a brain bleed and hydrocephalus. I don’t have the relational instability that many people with BPD have. Mostly, my emotions are extreme. In this sense, I relate more to the profile for multiple complex developmental disorder (McDD) than to that for BPD. I have never been psychotic, but I do have some delusion-like thoughts.

Lastly, I have motor difficulties. I saw a physiatrist till I was about eight, but was too young to remember the diagnosis. I have a much weaker left side than right, although I recently found out that my grip strength is equal in both hands. The fact that I use my left hand much less could indicate mild hemineglect (lessened attention to one side of the body, usually left). I also have and have always had a lot weaker muscles than most people. I have however learned to live with that. I mean, what do you need to reach your toes for when in sitting position? I do have significant balance and coordination issues. MY gait is very wobbly. I recently learned that healthy people can climb stairs without even holding onto the railing. In my home, where the staircase has only one railing, I need to hold onto the railing with both hands and wobble sideways.

These are the limitations I can think of now. I have some others, but this post has been long enough. When I feel like it, I will answer the next question I remember, which was about adaptations for coping with your limitations.

Realizing I’m Blind

During the #AtoZChalenge, I had all kinds of ideas in my head about what I wanted to blog about once the challenge was over. Now that it’s May and the challenge is over, I however experience a bit of writer’s block. All these ideas that I had during April seem to have vanished. However, O just remembered one of them, which was to write a kind of series discussing topics related to blindness. I am going to answer some of the questions from the Thought Provoker. The Thought Provoker was a monthly question relating to blindness between like 1998 and 2004. The provoking stories and questions are still online. Today, I will write a response to Thought Provoker 10, which asks what a person thinks when they first realize blindness or vision loss has touched their life.

The story seems to be about a person going blind later in life. I was born legally blind. My parents tell me I first realized I was visually impaired at around age seven, when Braille reading was introduced to me. I know my realizing that blindness affected me was a gradual process. At around age eight, I’d ask my parents: “How can yu see that?” According to my parents, it seemed as though I thought I could learn to be sighted.

My parents have always been open about the nature of my blindness. I knew I had a retinal condition. When a great uncle had a retinal detachment and described what it was like, I feared I’d get it myself, because I saw those flashes he described too. It wasn’t that far from the truth indeed.

Strangely, I also feard going blind from totally unrelated, ridiculous causes. Like, I learned about people who drank cleaning products with methanol in them and who subsequently went blind. From that moment on, when my parents used said cleaning product, I was always afraid that I’d accidentally touch it, then lick my fingers and go blind.

In 1993 and 1994 I had two eye surgeries to hopefully save my vision. They were largely unsuccessful, though I still had “hand motion” vision after the second surgery. This means that at 20 feet away, I could see someone’s hand moving but not count their fingers. My parents say that my eye doctor gave up on me after the surgery in 1994. My vision would deteriorate and there was no way of preventing this.

I never accepted this until I entered mainstream secondary education at age thirteen in 1999. I tried for a while to show I still had some vision, but quickly learned it was useless, certainly when compared to sighted people’s. This was the point at which I gave up on myself vision-wise.

Still, my attitude was more one of resignation than of active acceptance. The thought that my sight might be restored someday was on my mind all the time. When, in 2001, a cataract was discovered on my “good” left eye, I pretended to be more concerned with the appearance of my eye than with my vision. Inside, I did worry what had caused this. Was it the distilled alcohol I had drunk in chemistry class the day before?

I finally decided to go pursue cataract surgery in 2013. I wanted to know once and for all whether my sight could be restored and the only way to find out was to get the surgery. It was largely unsuccessful and I gained only very minimal improvement in vision from it. Since then, I realize blindness is not jus tin my life, but I’m in fact totally blind.

The emotion that went through my mind when I realized this was at first stoicism. I never really cared about my sight, I reasoned, and nothing had changed for the worse after surgery anyway. Then came depression and hopelessness. It dawned upon me that this had been my last chance for sight restoration until or unless technology advances. I hate that adage, because it gives me false hope, but I can’t shake it off. In this sense, I’m still in denial.

When I Look in the Mirror…: Blindness and Body Image

Today, Finish the Sentence Friday’s starter sentence is: “When I look in the mirror, I see…”. Now I could easily respond that I’m blind so I don’t see anything in the mirror. That would however be feeding a common misconception, that is, that blind people don’t have body image issues because they can’t see what they look like in the mirror. Some people even go so far as to assume blind people can’t have eating disorders for this reason. First of all, of course, not all eating disorders are about body image. However, let me tell you, I know several blind people with anorexia, which is in part about body image.

The relationship between my blindness and my body image is however quite complicated. I can’t say there is no relationship, because there is. For example, I gained over 40lbs in the last four years. I know this because people tell me the number on the scale. However, I haven’t tried this but I’m pretty sure that if I had to estimate my size, I would be far off and see myself as far thinner than I am. I do obviously feel my body and I use my hands to measure it. That’s gotten harder as I’ve become bigger, but I don’t notice it as much as someone would by looking in the mirror. I don’t exactly see myself as skinny, in that I know I’m quite fat, but I do often have a hard time reconciling the numbers on the scale with how I feel like I look.

This may seem weird, because I do have a negative image of my body’s shape and size. I hate the fact that I’m fat. When I notice clothing getting tighter, I feel pretty awful about myself. I’ve said that I should weigh half as much as I do now (which would put me in the underweight range). That being said, I play these mind tricks where I allow myself to gain weight despite wanting to lose it. Like, I’ve gotten this insane kind of logic where I’m at a good weight if halving it would put me in the anorexic range. I got it from a Dutch book called something like “How I halved myself and won the battle against anorexia again”.

There are other aspects to body image of course. People who estimate my age by looking at my face, usually think I’m quite a bit older than I am. I can feel the tiny wrinkles on my face, of course, if I really attend to them. That in turn makes them feel a lot larger than my husband says they are – he actually says I don’t have wrinkles at all. However, again, in my mind I still see myself as looking like a teenager.

The last time I had some vision of what I looked like, I was about thirteen. In this light, it makes sense that I am stuck on the image of myself as a teenager. It’s not just my body image though. I still see myself as somewhat like a teenager in many ways. That could be my autistic difficulty adjusting to change applied to myself.

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Success

One of last year’s NaBlPoMo prompts for January challenges us to write about a time we were particularly successful at achieving your goals. Since I always made long lists of new yer’s and birthday goals each year, far too long to keep up with, I never succeeded at keeping my resolutions. That doesn’t mean I’ve never been successful. Today, I’m sharing some ways in which I’ve been successful in life.

1. Education. It may’ve been over ten years ago, but I am still proud of the fact that I earned a hig level high school diploma from a mainstream school. I am prouder now that I know most people don’t attach expectations of my current functioning to it. I mean, when I had just fallen apart in 2007, at every phone call to my family, if I wasn’t moaning about my crisis state, or even if I was, I’d be asked when I was going to find myself a job. Now that it’s pretty much known that I won’t find myself a job anytime soon, or most likely anytime, I can celebrate my successful education as the achievement it was. It shows that, deep down, I have some perseverance. Sometimes I credit my parents for this, but it was I who wrote in my journal, a month into high school, that I hated it but regardless I wanted to complete this level of education.

2. Blogging. I still have a blog post in the works about why blindness sucks sometimes, and one of the reasons is I can’t seem to compete on equal footing with sighted people in the visually-driven world of social media. The thing is, I am still a pretty successful blogger, because I’ve been able to keep up a blog for nearly 2 1/2 years now (and four years with my old one). I also get a fair bit of interaction from my blog. Most of all, I do what I love and I love what I do with regards to blogging. I don’t get more joy (or traffic) from posts that have pictures in them than from those that don’t. I think, in a sense, of course I am not a great blogger in the bigger scheme of things, but I’m much more successful now than I was with my old blog.

3. Relationships. I often credit my husband for our successful marriage, but of course, it comes from both direcitons. I can say that one of only a few borderline personality disorder traits I don’t have is disloyalty in relationships. It feels a bit narcissistic to chalk this up as a success, because ideally no-one is unfaithful. I could go on to chalk up the whole fact of my marriage as a success, but that sounds even worse. Then again, this whole post could be seen as a bit self-centered. Let me just say my husband is hugely successful at keeping me as his wife, too. Oh crap, that sounds horrible.

4. Little things in life. I remember once getting an assignment for reading comprehension in like fourth grade about a kid who was in regular education and his brother, a special ed kid with intellectual disabilities. It was said that this brother was successful if he tore a piece of paper. This is of course ahuge stereotype of people with intellectual disabilities, but I mean it to illustrate that success can be found in little things. Like my blogging success, my success in many other areas is relative. I can make coffee with some help. I can put my dry laundry into the closet. I can clean my desk if reminded of it. These could be seen as just as useless to a non-disabled person as tearing a piece of paper. So what?

In this category also fall the daily successes that people without disabilities should also be celebrating. For example, I spent fifteen minutes on the elliptical today and have been exercising four out of six days this year so far. Celebrating this daily success can help us stay focused on the positive and reach our long-term goals. What have you been successful at today?

Test Scores Don’t Determine Ability to Get By in Life

On a Dutch blog by the mother of a child with autism, I read about the impact of IQ on school choice. The child in question is intellectually disabled. I am not. However, I can totally relate to measured IQ impacting the choices made for me regarding my education.

I have a verbal IQ that was at one point measured at 154. I have had many IQ tests other than this one. I didn’t score as high on all. On one, I didn’t even score within the gifted range. Nonetheless, my IQ score of 154 is mentioned in every diagnostic report about me.

This is a verbal IQ. IQ is composed of two components: verbal and performance. My perfomrmance, or non-verbal IQ cannot be measured because I’m blind. This doesn’t mean it doesn’t impact me. Professionals involved with autism have consistently suspected that my performance IQ is significantly lower than my verbal IQ and this could be one reason my abilities are constantly overestimated. It cannot be measured, however, so let’s just continue expecting excellent, or at least good performance out of me. Or not.

The mother writing the blog I mentioned above desperately wanted her child to have an IQ above 70 so that he could go to a school for children with behavioral disturbance rather than a school for children with an intellectual disability. In my own case, my parents desperately wanted me to score high so that they could convince the special school for the blind to recommend me to regular education. Finally, they needed not just to prove that I am intellectually capable, but that I excel academically, because they had decided I should go to grammar school. I had to have a standardized test score above a certain number and thankfully I scored within the expected range. The special school principal called my parents in total shock, because she didn’t have a clue that I was this capable.

In real life, unfortunately, it takes more than academic excellence to excel, or even to get by. It takes more even than a high verbal IQ. More than a high IQ in general, in fact.

Why do people rely so heavily on test scores to determine what they can expect out of someone? Because my abilities are consistently overesitmated, the autism consultant recommended further testing to determine why I function at a much lower level than my (verbal) IQ would suggest. My psychologist dismissed this idea. I understand, because it takes a lot to be able to assess someone who is blind. Besides, I’m not so sure I’d be able to take yet another exam, as that’s what it feels like.

Why don’t we just understand that people are different? People have different abilities and difficulties and they shouldn’t all have to be Einsteins or prove why they’re not. Yes, I know Einstein is sometimes suspcted of having had practically every neurodiverse codnition under the sun. I don’t care. My point is that, if someone doesn’t get by, they need help and it doesn’t matter whether a test score says they should be able to get by.

Seven Things

Last week, one of Friday Reflections’ prompts was to list seven things about yourself. I was at my parents’ for the week-end, where the desk I had my computer on was uncomfortably high. I also I had a hard time concentrating with my parents, husband, sister and her boyfriend in the room. For this reason, I didn’t write a post this week-end. (On Friday, I attended a concert so didn’t have the time to blog at all.) I’m still not very inspired today, so I just choose to use last Friday’s prompt. Here are seven keywords that describe me.

1. Preemie. Last week was World Prematurity Day, so I just got to choose “preemie” as my first descriptive word. I was born a little over three months premature in 1986. I was very lucky to have been born in the city of what I believe is the oldest children’s hospital of the Netherlands and even luckier that the Netherlands is a developed country with good health care. Read this article on Preemie Babies 101 to find out more about preemie care in developing countries. This made me realize how fortunate I am.

2. Intelligent. This is the first thing my parents would say if they had to describe me, or at least it was when I grew up. When I was twelve, my verbal IQ was measured at 154 (my performance IQ cannot be measured because I’m blind). This means I may be intellectually gifted. At least, Mensa considers a verbal IQ of over 130 to suffice for membership if you’re blind. Yes, I did at one point consider joining Mensa.

3. Blind. Okay, let’s start the collection of disability labels here. I am blind. I have always been legally blind and have been practically totally blind since age eighteen, although I still keep noticing that my vision can get better or worse. I notice even tiny changes that are not measureable by ophthalmologists. I am clasified as having light perception only and have been classfied as such ever since 2004, but I still use the tiny bit of vision I have for orientation sometimes. Maybe I shouldn’t, but I can’t shut it off.

4. Autistic. And possibly otherwise neurodiverse. I wasn’t diagnosed with autism till age twenty but suspected it from age twelve on. My parents didn’t want to hear of it, so after they voiced thir strong disapproval of my “hypochondriasis”, I pretended I was completely neurotypical. I failed, of course. Even though my autism diagnosis has been questioned a few times, most professionals are sure that I’m not neurotypical.

5. Mentally ill. After all, I have a mental health diagnosis. I am not one of those neurodiversity activists who believe that a psychiatric disorder is completely separate from a neurodevelopmental disorder. That distinction is, in my opinion, entirely political. I however do sometimes wish I didn’t have the diagnosis of borderline personality disorder, but that’s because BPD is one of the more stigmatized mental health diagnoses.

6. Blogger. I have been a blogger since 2007 (or 2002, if you count my online diaries that have been republished on my old blog). I don’t like to be associated with my old blogs though. I have this idea in my mind that I need to blog regularly or i need to start over and not associate with my old blog at all. It’s really surprising that this blog has been active for over two years, because I’ve started and restarted my Dutch blogs half a dozen times in the last year.

7. Wife. I don’t like this word, although I do like to refer to my husband as such. It’s probably because, in Dutch, the word “wijf”, which sounds like “wife”, is an insult for a woman. I always feel that the word “wife” sounds slightly submissive. However, I like being my husband’s wife.

My Experience With Therapy and Counseling #Write31Days

31 Days of Mental Health

Welcome to day 23 in the #Write31Days challenge on mental health. Today, I’ll focus on another question in the 30-day mental illness awareness challenge. For day 23, the topic is your opinion on therapy. I will share my experiences of therapy and my opinion on various approaches. I have decided to include both traditional psychotherapy approaches and non-verbal approaches.

I had my first experience of therapy as a child, when I had four sessions of play therapy. I didn’t like the therapist, didn’t have insight into my problems, and four sessions obviously wasn’t enough to garner any results. In hindsight, my play behavior did show my problems with rigid thinking, emotion regulation and behavioral control. For example, I’d throw out the dollhouse dolls with purple hair because “people don’t have purple hair”. I also preferred to play with toys that allowed me to show anger, such as toy guns. One vivid memory I have is of me trying to overflow the water tray. The therapist did show me why it wouldn’t work, but I tried anyway.

My first experience with verbal therapy was when I was nineteen and attending the rehabilitation center for the blind. Once again, I didn’t like the therapist, who appeared a bit inpatient towards my difficulties adjusting to blindness and misunderstanding of my social ineptitude. She tried to offer practical advice, while I felt I needed to process the rollercoaster ride that my life had become. Of course, time constraints – I had only about twelve sessions -, prevented us from going deeper.

During my first sixteen months in the psychiatric hospital, I didn’t have a psychologist. I did do movement therapy, which helped me greatly to release my emotional tension. It was here that I learned to rate my distress level – I came up with a system myself. Thhat being said, when later people asked me to rate my distress level, I was often stuck. This moveement therapist I had at the acute ward was one of the more helpful therapists I’ve had.

At the resocialization ward, I tried cognitive-behavioral therapy for a bit. It hardly worked, because I and my therapist agreed I had good reason to be anxious. Then, when I was diagnosed with DID and PTSD, the therapist pushed me to try EMDR, but I resisted. I didn’t have that severe PTSD symptoms, after all, and did have quite a bit of trouble with self-regulation and dissociation.

When I moved to my current institution, I got diagnosed with BPD. My therapist’s expertise was schema-focused therapy, an approach I’d wanted to use for a while. Unfortunately, it didn’t work out. The therapist told one of my parts, who hides her inner weakness behind a stubborn attitude, that she’s a “punitive parent” and needs to disappear. I strongly feel that each part of my personality has a function, so this dismissive attitude didn’t fit me well. Besides, though I learned some from the book the therapist recommended, most of the information was just a bit too abstract.

This therapist left in 2014 and I’ve had a new psychologist for a little over a year now. With her, I focus on supportive counseling and rehabilitation. I find this is most constructive. I do hope that, in the future, I can get some formal psychotherapy again. I have a dialectical behavior therapy self-help book, which is quite interesting. Then again, I find it hard to make a long-term commitment to sticking to one thing to focus on. That is probably the main thing keeping me from engaging properly in psychotherapy.