Tag Archives: IQ

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

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

Fear of Joy

Fear of joy. Some people find this hard to imagine, but it is real for some of us who’ve experienced depressive symptoms. It is real for me.

I have a really hard time experiencing joy without sabotaging it with fear. I don’t deliberately do this, but quite often I tend to feel intense anxiety when I notice I am in a good mood. Then obviously my mood goes down again.

It’s probably because of expectations. There is this man on my unit who always says he’s doing so-so or bad and never says he’s doing well. He says it is because, if he says he’s doing well, they’ll think he’s no longer mentally unwell and will expect him to leave the psychiatric unit. I can relate to this. Now I myself don’t want to be on this unit forever, like this man does. What I can relate to is the expectation that, if I’m well once, I should be able to keep the feeling and not fall unwell again. Worse yet, I fear that if I say I’m feeling well, I will be expected to cope with less support, more independence. In this sense, I can relate to the fear of being kicked off the unit if I say i’m well. Though I don’t want to stay on this unit forever, I do want to maintain a certain level of support.

Of course, everyone, whether we’re mentally ill or not, experiences highs and lows. People who aren’t mentally ill aren’t expected to keep feeling well forever if they say they’re well once. Why should people with mental illness be expected to be cured if we say we feel well once, then? The truth is, no good mental health professional or understanding relative expects this out of us.

Of course, I remember the situation a few years ago where a woman with depression was denied sick leave benefits because she “didn’t look depressed” in Facebook photos. That sort of thing may happen, and I’m sometimes afraid of this too. Like, yesterday I told my named nurse I’m afraid of not getting community support once I live with my husband. The reason is my staff aren’t coming to the tiny village to assist me with my application and the social consultant there isn’t coming to my institution. This means I’ll need to file the application all by myself. Of course, my husband will be there, but I doubt he knows what care I’ll need. Now I’m at once afraid that I’ll not be able to clarify what I need so that the consultant won’t be able to get me care, and that I sound too capable. The care needs paperwork that the Center for Consultation and Expertise created for me in 2013 lists my intellectual giftedness. I’m tempted to delete that in the process of updating it for the current application. The first reason is because I have no clue what significance a high IQ has over a normal IQ when applying for care. I mean, it means I can’t get care from the intellectual disability agencies, but I couldn’t if I had a normal IQ either. However, the other reason is I fear it will be seen as significant by the social consultant and they’ll determine that if I’m so intelligent, I should be able to solve my own problems.

This is what’s behind my fear of coming across like I’m doing well, and consequently my fear of experiencing joy. Of course, like I said, every understanding person should realize that having a good day doesn’t mean being cured of your mental illness. Then again, I’m not sure most people are all that understanding. Could be my stress-related paranoia though.

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.

High-Functioning vs. Low-Functioning Autism: It Isn’t a Dichotomy #AtoZChallenge

Welcome to day eight in the A to Z Challenge on autism. Today, I want to focus on a controversy within the autism/autistic communities: the high-functioning/low-functioning dichotomy. It isn’t a dichotomy at all, but many people feel it is. Let me explain.

A number of more capalbe autistic people do not want to be associated with “low-functioning” autistic people. Conversely, many parents of less capable autistic children do not feel their child has anything in common with “high-functioning” autistics. My point in this post is not that there are no differences between people on the autism spectrum. In fact, there’s a saying going round that if you’ve met oen autistic person, you’ve met one autistic person. It is also true that some autistic people are, overall, more capable than others. My point with this post is that there is no hard line to cross between high-functioning and low-functioning autism.

I already described some common assumptions about the HFA/LFA distinction in August of 2013. These assumptions are mostly false, because they are based on the dichotmous view of functioning levels. For example, a person doesn’t suddenly drop off a cliff in functioning when their measured IQ score is below a certain point. Again, a person with an IQ of 50 obviously does funciton at a lower level than a person with an IQ above 100, although with autism affecting much more than just cognitive ability, this isn’t even necessarily that simple.

After all, in autism, much more than cognitive ability is affected, and a person who has a high measured IQ might have severe behavior problems because they do not understand social situations, have sensory processing issues, etc. For example, I have a measured IQ of roughly 150, but I still need intensive support.

There are, of course, people who fall on the less capable end of the spectrum in almost all areas of functioning. They have a low measured IQ, are non-verbal, have severe behavior problems like aggression, etc. Some others are at the more capable end of the spectrum in most areas. These people – most of whom have an Asperger’s diagnosis -, appear just quirky and odd in social situations, but do not have many other problems. I do not say there is no difference between these people. What I mean to say is there is no cut-off point or clear-cut ability that all “low-functioning” autistic people can’t perform and all “high-functioning” autistics can.

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.

“You’re an Adult.”

Last Tuesday, I went to the dentist. I have trouble taking care of myself, including brushing my teeth. I can’t remember to do it regularly, and when I do remember, I find it hard to motivate myself because I’m sensitive to the feel of the toothbrush and the taste of the toothpaste. The dentist gave me a mouthwash with a relatively neutral taste and told me to rinse with that after toothbrushing. I am allowed to brush my teeth without toothpaste for now to get used to the feel of the brush and into the habit of brushing first. The dentist instructed the nurse who was with me, a nurse from another ward, to tell the staff they needed to actively remind me to brush my teeth. The nurses on my ward, however, didn’t feel like this, saying I’m an adult so should take responsibility for my own self-care.

The phrase “you’re an adult” is uttered time and time again when I (or other patients, but I’m speaking for myself now) require help or display a problem that is not normal for a healthy adult. Saying we’re not healthy is not an excuse, because what are we in treatmetn for then? A nurse told me yesterday that if I had a low IQ or had been floridly psychotic, this would’ve been an excuse not to be able to remember my self-care. As if people with an intellectual disability or psychotic disorder are not adults.

The thing is, whether you’re physically or mentally capable of taking care of yourself, does not determine whether you’re an adult, and whether you’re an adult, does not determine your respectability. The idea that an adult should be capable of caring for themself, is ableist. The idea that an adult (at least, one who displays adult abilities) is more respectable than a child, is not just ableist but ageist too.

Honestly, I don’t care whether I’m an adult. I don’t care whether my abilities reflect my age. I care that I’m an individual and have individual needs. In some areas, I’m self-reliant. In other areas, I require practical care. In others, I require guidance. None of this makes me deserve less human dignity. Similarly, children and persons of any age with intellectual disabilities deserve as much human dignity and respect as a healthy adult does. We treat them differently, of course, but that is because they have different abilities, difficulties and needs. A child is different from an adult, and an adult with a disability is different from a non-disabled adult, but that doesn’t make them a child. Everyone is an individual who deserves to be treated like an individual with dignity and human rights.