Tag Archives: Intelligence

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

Defining Myself

One of the March writing prompts on the SITS Girls site is “what defines you?”. I could write an essay on this, and in fact, in 2002, I did this in response to the “defining yourself” prompt on a disability website I visited at the time. I wrote an essay on the ways in which I was different from most other people: being blind, being in the intellectually gifted range and (I thought at the time) being a lesbian.

I no longer identify as a lesbian obviously, but the other minority statuses still apply to me, and so do many more. I am autistic, mentally ill, unemployed, etc.

Do these minority statuses truly define me? I don’t think so. Rather, I think I am defined by the core of my personality. Having a poor self-image makes it hard to define myself as such, but I will try.

1. I am intelligent. I don’t like my intelligence in a way. I embrace my giftedness as a minority status, although to be honest I don’t think I’d like to be part of elitist high IQ societies. I am part of a few Facebook groups that define giftedness as asynchronous development and often also link it to high sensitivity. These groups do not see giftedness as all positive, like the high IQ societies do. They rather see it as a distinctive but value neutral characteristic.

As a more abstract quality, I however don’t embrace my intelligence. It is so often used to define the core of my abilities, as if I can’t be impaired with such a high IQ. I realize that intelligence is what allows me to write relatively coherent blog posts, for example, but if it’s connected to social skills or practical independence, that’s just not okay.

2. I am stubborn. Sometimes, people say I am a go-getter. Other people say I give up way too easily. It all depends on the situation. In a way, my stubbornness can be seen as rigidity: if I’ve got something in my mind, it’s got to go this way. I just today remembered pushing my father to vote for a particular political party when I was too young to vote (around sixteen). I don’t remember the details and am not 100% sure he ended up voting for that party, but I do remember being quite adamant that at least one of my parents was going to vote for my party.

3. I am sensitive. I want to firmly distinguish this from being empathetic, as in knowing how to react to people’s emotions. However, I do sense and absorb people’s emotions very easily. This sometimes leads to overload. I am also, of course, sensorially reactive, wich can also lead to overload.

4. I am socially awkward. Back in like 2003, I used to own an E-mail group (one of the many inactive E-mail groups I’ve owned) called something like Socially_Awkward. This was how I defined myself in the midst of suspecting I had autism but also being aware that others saw autism as an inherently negative thing that an intelligent person like me shouldn’t associate with. The fact remains that I’m socially awkward. I can converse semi-normally when the situation is familiar, but I often have to be taught explicitly how to handle unfamiliar social situations.

These are but four of my characteristics. I undoubtedly have many more, but it is hard for me to think of them. There are also many other ways in which I could define myself. As I said, I could go with my minority statuses. People could also define themselves by their jobs or roles. In this case, I’d be defined as for example a wife and a blogger. Then there are probably many more ways to categorize and thereby define people. I am curious to know how you define yourself and what categorizations you use to define others.

Asperger’s as Mere Genius

Just came across a question on an Asperger’s page on Facebook. Someone asked whether we could name any historical genius without Asperger’s. Most people couldn’t, but this made me think of the validity of the whole Asperger’s concept in highly intelligent people, and whether it’s not just their genius that makes these people appear autistic.

If everyone who is a little quirky gets labeled with Asperger’s, it erodes the meaning of Asperger’s as a disability. I know that probably the people who can’t name a genius without Asperger’s, don’t see Asperger’s as a disability. That’s fine with me, but I for one do see it as a disability, having an Asperger’s diagnosis and clear difficulty functioning.

That’s in my opinion what it boils down to. Most geniuses can function quite well in life. They may have some trouble making friends with the average person, but that’s because they are highly intelligent and the average person isn’t. I did not start suspecting an autism spectrum disorder in myself until I found out that I couldn’t interact with my classmates at the high level high school either, while around 30% of them were gifted. In this sense, I feel the fewer labels the better, and I don’t see why you need a disability label if you’re going to see it as all positive. We already have the label of giftedness for that.

The reason I eventually sought an autism diagnosis, was not that I had a hard time making friends actually. It was because I was overwhelmed with even the simplest of daily tasks. If I didn’t have this many problems, I would be fine just being gifted. It wouldn’t mean I’d have absolutely no issues, because after all I’d still be a misfit among all average peers. But autism isn’t about fitting in or being able to make friends. If that were the case, many more people would qualify for the label of autism than is currently the case.

I was discussing this whole labeling thing with my parents yesterday. My father, who says I’m merely gifted and not autistic, said that Hans Asperger probably didn’t intend merely quirky kids to get his label. Rather, the kids he intended the label for were most likely unable to have any form of meaningful interaction and were completely preoccupied with their own special interest. I wouldn’t be an Aspie in this situation, but neither would anyone on the Facebook page. Now I don’t necessarily agree with this analysis of what Asperger intended his label to mean, and I don’t have his study at hand to look it up. However, DSM-5 backs up this portrayal of autism spectrum disorder in its description (and to some extent criteria) of ASD. I am not sure myself that I meet DSM-5 criteria for ASD, and I can see that many people diagnosable as Aspie under DSM-IV, don’t.

In my case, this has nothing to do with the criterion about the symptoms limiting people’s independent functioning, like many parents of severely autistic children say. I am most definitely impaired in my functioning. The problem areas I’m having are just not the core ASD impairments. But I am impaired.

For most all-genius-people-are-Aspies proponents, the opposite is true: they do have core ASD symptoms as their primary reason for being misfits, but they aren’t limited in their daily functioning. In this sense, I can totally see why parents of severley autistic children would not want them on the autism spectrum. Why lump people with no impairments together with those with severe impairments? That’s either stigmatizing the people with no impairments or invalidaitng the people with severe impairments. One of the main reasons people are fighting to keep Asperger’s on the autism spectrum, is because we most definitely have impairmetns and are in need of support. If Asperger’s is reduced to mere genius and the accompanying and inherent misfit status, I am not saying I want no part in it. Identifying as an Aspie would then be similar to identifying as my Myers-Briggs personality type, after all, and I do participate in places for that. It would, however, mean that I and many others who do have significant impairments, would need an additional label to justify their need for support.