Tag Archives: Intelligence

“Just Blind”: My Experience With Passing and the Resulting Burn-Out

Last May, I wrote my first post in the 30 Days of Autism Acceptance. I never followed through with the rest of the challenge, but today, I’m inspired to write on the day 2 topic, which is passing and autistic burn-out.

There is a lot of societal pressure to look and act as “normal” as possible. Passing is the situation where people who don’t belong to the “normal” majority appear as though they do. This may refer to disabled people appearing non-disabled, but it also refers to people of racial minorities being perceived as white or to queer people being perceived as straight.

I never fully passed for non-disabled, because I’m blind, but I did try to pass for a long time. People however often could tell that I had some kind of disability even if they couldn’t tell what it was. Interestingly, besides not passing for sighted, I don’t believe I could ever fully pass for neurotypical, except to those who believe an autistic appearance is normal for blind people.

In addition to appearing normal, disabled people are also pushed to achieve those things that are deemed “normal” in society. That is, except when you look so obviously disiabled that people judge you to be too “low-functioning” for that, in which case they usually greatly underestimate your abilities. I may write about that at some other point. There is a lot of pressure even from within the disabled community to perform as well as non-disabled people do. I see this particularly in the blind community, except, once again, when a person is seen as severely disabled enough not to need to achieve.

Until I was twenty, I was almost universally perceived as “just blind”. Oh and presumably extremely intelligent. As such, I had to perform according to my intelliigence, so I had to go to a mainstream, high-level secondary school. All my problems there were chalked up to either my blindness or my high intelligence.

At age twenty, I resided in an independent living training home for the disabled, which had originally been set up specifically for the blind, so most staff had some expertise on blindness. It was there that it first became apparent that I’m not “just blind”. I was referred for a diagnosis and diagnosed with an autism spectrum disorder in March of 2007. Eight months later, while living independently, I completely fell apart. I experienced autistic burn-out. Yet many people still see my diagnosis, my burn-out and my subsequent voluntary admission to a psychiatric hospital, as an elaborate way for me to manipulate people into giving me care.

I never fully recovered from my burn-out, in the sense that I went back to living a “normal” life for a person who is “just blind”. I was in college in 2007. Now, even though I’m out of the institution, I have no plans of going back to full-time education or finding a paid job. Though I may want to attend some part-time education or do volunteer work in the future, I’m now happy to be at a day center doing sensory activities. I am also glad that I was finally approved for home support yesterday.

In this sense, I did in fact recover from my burn-out. I mean, I did not return to the life that essentially caused me to burn out, but I do think my life is meaningful. In fact, I am happier now than I was when I still passed for “just blind”.

Why I’m Happy I’m Not Gifted After All

In 1999, I had a psychologcal evaluation done. Included in it was the verbal part of the Wechsler IQ test for children (WISC). The performance part can’t be administered because I’m blind. My verbal IQ score, according to the report, was 154. This indicates I may be gifted.

There were several problems with this test, the most importnat being that I’d had the exact same test a year earlier. Now i must admit the psychologist who tested me in 1998 also estimated my IQ as in the gifted range.

In 2002, I had the verbal part of the Wechsler IQ test again as part of a research project on former preemies. I scored above-average, but not gifted. I blamed this on the new version of the WISC being used and continued to use the score of 154 as my official IQ score and proudly showed it off wherever appropriate. In fact, I used it as my official IQ score up till a few months ago, when I had the verbal part of the adult Wechsler test as part of my autism re-assessment. It showed I have an above-average IQ, in line with my high level high school education, but definitely am not gifted. My verbal IQ as of 2017 is 119.

When I told my parents I suspected I didn’t score as gifted on the test this year, my mother responded with: “You just don’t want to know about it.” She seemed to mean I underestimated my achievements, but did send me the message that I was supposed to be gifted or I didn’t try my best.

IQ, of course, is not a static characteristic. Before the Flynn effect was known, researchers thought people’s intelligence started decreasing in their late twenties already. I don’t know much about the science of changing scores on IQ tests, but I do know many factors contribute to one’s performance. Like the letter written to me at the end of the 2002 research study said, it’s just a snap of a moment. Maybe my IQ did really decrease as a result of my having been out of education for ten years. Maybe the medication I take has a dulling effect on my cognition. Maybe, like I said, the score in 1999 was based on retest bias. I do care in some ways, because I don’t want to be “dumb”. Then again, an IQ of 119 isn’t “dumb” and labeling people with a lower IQ as dumb is ableist and classist anyway.

However, I am also happy that I am no longer labeled gifted. I can still say I’m smart and people will acknowledge it, but I don’t need to carry the burden of being seen as “hyper-intelligent”, as my father once coined it.

There are a lot of ideas about gifted people that just don’t apply to me. Now some of these ideas are really prejudices, so the solution isn’t to distance myself from the community. However, within the gifted community there is also the assumption that people who are gifted naturally struggle with social and emotional development, unless they interact with people of their intelligence level. I embraced this idea before I was diagnosed with autism. I still understand it bears some truth. However, my take on diagnosing misfits is pragmatic: if an approach suited to one population clealry doesn’t fit, then maybe the person in question doesn’t belong to (just) that population after all.

Now you could say I’m blind and (supposedly) gifted, so I really should be given services for blind people who are gifted. In other words, it’s no wonder I struggled at special education, because most kids there are not of my intelligence level, and of course I struggled in high school, because no other kids there are blind. I can tell you though that there may not be many blind and gifted people, but they certainly are there and I struggle with interaction with them too. Besides, no-one ever gave me the opportunity of going to a high level special education school.

I don’t honestly know why, interestingly, people prefer my supposed gifted identity to my autistic identiyt when they want to choose one. I prefer my autistic identity, because it fits better. For others though, there seems to be something inherently wrong in autism and something inherently fabulous in giftedness. This goes even for people who keep telling me that all gifted people struggle with social interaction and behavior so I don’t need my autistic identity for that. Well, why then not say I don’t need my gifted identity for that?

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

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

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

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

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

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

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

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

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

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

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

List of Things that Make Me Me

During the past week and a half, a lot has happened, and yet so little has. I spoke to the patient advocate regardng the recent diagnonsense. She recommended a second opinion at another hospital. For various reasons, I decided against this. My psychologist did consult a psychiatrist at the brain injury unit, who told her she was right that brain injury and autism shouldn’t really be diagnosed together, but the same goes for borderline personality disorder and brain injury. Now I’m left with a very confusing diagnosis. I think it’s going to be personality change due to a general medical condition (brain injury), but my psychologist also said something about generalized anxiety disorder and attachment disorder possibly going onto my diagnosis. And I thought I was the one who collected labels.

This is all very confusing, because I rely on concrete labels for defining myself. How coincidental that I just opened a journaling eBook to a random prompt and it told me to make a list of my uniqueness, my marvelousness, my talents. These are not psychiatric labels, because, although some people consider autism a gift, I cannot say that autism itself should be one of my talents. With no further ado, here is my great list of things that make me me.


  • I am intelligent. I have a lot of knowledge and I can articulate it well most of the time. I am good at analyzing stuff.

  • I can persever(at)e if I truly want to achieve something.

  • I am sensitive. Sometimes, this sensitivity causes me to experience overwhelm to the point where I appear uncaring, but I truly care about other people.

  • I am creative. I write, I craft, I make soap.

  • I have a pretty cynical sense of humor. I remember on my first day in the psychiatric hospital, telling jokes about how you could tell the patients and staff apart.

  • I am stubborn and I like it. My husband jokes that my parents haven’t made up their minds about anything since the 1980s. I am thankful not to be that extreme, but I can really want to be right sometimes.

  • I am a semi-successful blogger even though I haven’t been blogging as much over the past few months.

  • I am a good wife.


This list should or could probably be longer. It also didn’t really cheer me up. However, it does help me see that I’m more than my confusing set of diagnosense.

In Between: Walking the Disability Line

This week, the prompt from mumturnedmom is “in between”. I immediately thought of my life as a disabled person. For many years, I’ve thought of it metaphorically as me walking a line between being good enough to be included in the non-disabled world and bad enough to deserve care.

I am multiply-disabled. I reside in an institution with 24-hour care. I am not even in the lowest care category for institutionalized people now that we’ve faced massive budget cuts and the lower care categories got deinstitutionalized.

Yet I am intellectually capable. I am stable enough not to need to be on a locked unit, and in fact am going to leave the institution in a few months. I will then fall in a lower care category, be entitled to less care. Yet I will be able to live a more normal life with my husband.

People often automatically assume that, if you have certain abilities, you are automatically less disabled than if you don’t have these abilities. For instance, I am always seen as “high-functioning” autistic because of my IQ. This is despite the fact that I’m in a similar care category to someone with an intellectual disability who has fewer behavioral challenges, sensory issues, or is more capable in daily living tasks than me.

People also often automatically assume that deinstitutionalization is appropriate only for those with few care needs, those who are “high-functioning” if you will. People don’t take into account that institutional life requires consumers to live in a group setting, which may not be possible for some.

I struggle with this view of disability as a continuum at best and a dichotomy at worst. It makes me walk the line between “high-functioning” and “low-functioning”, when in truth, I’m neither and I’m both and I’m in between.

I am “high-functioning” because of my IQ and my language skills. I am “low-functioning” because of my poor daily living skills. In most ways, however, I’m neither and I’m both and I’m in between depending on circumstances both within myself and in the environment. Yet I’m forced to choose.

And I refuse to choose. I want to be accepted as a human being with her own set of capabilities and difficulties. I refuse to choose between being “high-functioning” and being “low-functioning”, between being dependent and independent. After all, I am interdependent, like veryone else.

mumturnedmom

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.

#DearSoandSo: Psychological Evaluations

Dear evaluating psychologist,

You don’t know me yet. Soon, you’ll know me as the blind, autistic person who was born prematurely. Then, you’ll hopefully get to now me as Astrid. I was referred to you by the autism center’s consultation team for neuropsychological and intelligence testing.

You need to know that I am a survivor of psychological trauma. I won’t disclose any details, but it’s important that you know that psychological evaluations are a big trigger for me. They are very intimidating. As a result, I might dissociate and put on a mask, which might influence my performance.

I ddon’t know how exactly to prevent myself from dissociating or putting on a mask. I also don’t know for sure what you can do to help me. However, I would suggest you refrain from making assumptions about my performance prior to or during testing. I will try to remember that I’m still me with my abilities and difficulties, regardless of the outcome of testing. However, this is hard to remember.

I hope that the testing experience will be as stress-free as possibe. Thank you for any help you may be able to provide.

Kind regards,

Astrid

I went to the country’s top notch autism center, which happens to be in my town, yesterday. They thankfully believe I’m on the spectrum and don’t see a need to re-evaluate me. They however recommended intelligence and neuropsychologcal testing to find out why I function at a much lower level than my verbal ability would suggest.

They also recommended a sensory processing evaluation. I have suspected I have sensory processing issues for a long while, but now that I think on it, I may ask specifically about auditory processing. I used to be seen as an auditory learner (probably because my tactile skills were worse), but I still have a lot of difficulty understanding speech when there’s background noise. I also tend to process speech with some delay it seems. For example, I’ll say “What?” and then realize I did hear what was being said. Some people in the sensory processing disorder community said that auditory procesisng is different from sensory integration, so I’ll have to ask specifically about this.

Lastly, they recommended a support worker come to visit me at home and in the institution to establish my independence and support needs. Then, they could help me develop greater independence skills.

Dear So and So at Mummy from the Heart

Intelligence and Autism #AtoZChallenge

Welcome to another day of the A to Z Challenge on autism. Today, I will discuss autism and intelligence.

First, what is intelligence? Intelligence is generally defined as a person’s overall cognitive ability across a number of domains, such as verbal comprheension, perceptual reasoning, working memory, etc., as measured by standardized IQ tets. Examples of IQ tests include the Stanford-Binet test used mostly in the U.S. and the Wechsler scales used more in Europe.

An average IQ score is 100. IQ follows the bell curve by which, the further a score deviates from average, the fewer people have this score. The standard deviation used on IQ tests is 15 on the Wechsler scales. This means that an IQ of 70, which is defined as the cut-off for intellectual disability, is two standard deviations below the norm. Approximately 2% of the population have an IQ below 70.

On IQ tests, the score is usually divided in a verbal commmponent and a non-verbal or performance component. Autistic people commonly have a gap between their verbal and non-verbal intelligence quotient. Some non-verbal autistic people show a dramatic increase in their IQ scores once they learn to type. Other people, usually diagnosed with Asperger’s Syndrome, have a high verbal IQ but a lower or even below-average non-verbal IQ.

It used to be thought that autistic people usually had a low IQ or intellectual disability. Current estimates are that approximately 40% of children with autism spectrumd isorder also have an intellectual disability. Children diagnosed with Asperger’s Syndrome by definition do not have an IQ below 70. However, some people with Asperger’s score as borderline intellectual functioning (IQ between 70 and 85) and may benefit from services for people with an intellectual disability.

IQ may be a predictor of how capable a person will be of becoming independent. However, other factors play a role too, such as adaptive functioning. Young children with Asperger’s usually do not have problems with self-help skills or adaptive funcitoning (other than that required for social interaction). However, as children mature, more problems with adaptive functioning in general may arise. I unfortunately have never had an assessment of adaptive functioning, so I don’t know how I’d score. However, people are usually surprised at my ability to use the computer but not, for example, cut up my own food or take proper care of my personal hygiene without prompting.

Four Things I Wish Parents Knew About Neurodevelopmental Disorders

A few days ago, Natasha Tracy of Bipolar Burble wrote an interesting list of things she wishes parents knew about mental illness. I am going to use this list as inspiration and write a list of things I wish parents knew about neurodevelopmental disorders.

1. Neurodevelopmental differences exist. Whether they are disorders, is a societal controversy that you as a family cannot solve. If your child exhibits behaviors that get them in trouble, you may view them as just part of their individuality. That is great! However, please note that your child’s neurology will not change by the way you view it. If your child gets stuck, that’s a sign that they need help whether you like to admit it or not.

2. Neurodevelopmental disorders are not your fault. Your child’s neurology is not something you caused by anything you did or didn’t do (unless you as the mother drank or used drugs during pregnancy). Whether your child’s neurology leads them to get in trouble at home or at school, is related to the interaction between their neurology and the home or school enviornment. You (and the school) can make positive changes there.

Most adults feel their parents did things during their upbringing they would’ve liked to be done differently. However, you probably do the best you can. If you start feeling powerlessness and exhibiting behavior you regret, it is time to seek support.

3. Seeking help is not a weakness. It is in admitting our limitations that we show our strength, in this sense. If your child is unmanageable, it is better to seek help than to treat them harshly or to indulge into their every wish. You are not a bad parent for needing help with your child. Again, the child’s behavior is a result of an interaction between their neurology and the environment. Especially if your child is having trouble in school too, this is a sign that it’s more their neurology.

4. A diagnosis is a label, not a verdict. Your child with an atypical neurology might need a diagnosis because of the need for services. This does not change who they are as an individual. Neurodevelopmental disorders affect children and adults of all intellectual levels and personality types, and there are so many different aspects to neurodiversity that no two children with the same diagnosis are alike.

Because of the way the school system worked when I grew up, a diagnosis for me would’ve been a verdict in a way. I hope this has changed now.

Mums' Days