Category Archives: Advocacy

Blind People Should

A few years back, there was a flash blog event that had autistic bloggers all finish the sentence “Autistic people should …”. I think the reason was to counter the hurtful search suggestions that Google made when people typed in “autistic people should”. I was reminded of this event when I read this weeks #theprompt, which is “should”.

I was also reminded of my own preconceived ideas about what disabled people should. A few days ago, I wrote to a disability support group on Facebook about feeling like I was setting a bad example for the disability community because I don’t work and spent years in an instituton. Shouldn’t I have to explain why I can’t work or live fully independently? The short answer is: no.

I was feeling like I should have a disability label to justify my every need because of what I learned whilst being part of E-mail groups run by the National Federation of the Blind, one of the two major organizations of the blind in the United States. This was in the early 2000s, mostly before I’d been diagnosed with autism. What I learned was that blind people, unless they have severe additional disabilities, which I’ll address later, should be able to achieve as much as sighted people do. For example, we should be able to read at the same speed, get around with a white cane completely independently, go to college (I think I picked up the term “college-bound” there), be employable, etc. I can’t do or be any of these things. Keeping the bar of expectations high was the motto of the parents’ organization of the NFB or so it seemed. I always imagined a candy bar put up on a star light years away and me being told to reach for the stars.

Sometimes, when people judged blind children or adults they only knew through newspaper articles not to be independent enough, someone would come up with the get-out-of-jail-free pass: “Maybe the person has additional disabilities?” This is a real possibility, since strangers usualy assume my every impairment is due to blindness despite my additional disabilities, so I assume newspaper reporters are no different. Yet does it matter? Should it? Apparently, sometimes.

In an old (like, late 1990s) issue of Future Reflections, the NFB’s magazine for parents of blind children, a blind adult reported his shame when he crticized parents of blind teenagers for not taking their teens to a seminar on independence. It turned out he was speaking to a roomful of parents of teens with multiple disabilities, so obviously they couldn’t bring their teens. I assume most of these teens had the type of disability that seems to have a monopoly on the term “multiple disabilities” when additional disabilities are involved: severe intellectual disability. After all, when I played the additional disabilities card after my autism diagnosis in 2007, I was told to look up Temple Grandin.

I may sound bitter and I shouldn’t be. After all, I do get the services I need now, even though they cater to, well, people with severe intellectual disabilities. That being said, I know I’m incredibly privileged now to have found my particular care agency, because most others would try to fit me into the mentally ill mold or the blindness mold or any other not-completely-fitting mold rather than looking at my needs.

This all brings me to my point, which is that blind people, autistic people, any kind of disabled people, any kind of people in fact, should not have to justify their needs. We are all human and all different, after all.


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

“Pushy Parents”?: A “Pushy Adult”‘s Opinion

There has been some talk around the UK special needs blogosphere about a recent report that suggests parents may be pushing for special needs diagnoses when these are not needed. The report is poignantly called “Hooked On Labels”. It points out that many teachers feel that pushy parents are responsible for unwarranted learning or behavioral difficulty diagnoses. The report does not ask for parents’ views and did not ask anyone to quantify how many parents might be working the system to gain diagnoses their children don’t need.

I understand both sides of the issue. My father used to work at a secondary school with at the time around 1500 students. Of these, at one point, 139 had a formal dyslexia diagnosis. At the time, it was thought that only 1% of the population have dyslexia, hence suggesting a serious overdiagnosis. I just googled it and found current estimated prevalence rates as high as 17%. Assuming that reading ability runs on a bell curve, this would indicate that those only one standard deviation below the norm would be classified as dyslexic. Now I have no clue whether reading ability runs on a bell curve, but if a disability occurs in as many as 17% of the population, in my opinion, it can barely be called a disability. This means the system is failing, not the student. Either that, or parents are being pushy.

I find it interesting that parents are automatically blamed for overdiagnosis of learning or behavioral difficulties. Some teachers surveyed for the report suggested parents were working the sysstem to get accommodations for their children. Some even said perhaps parents wanted these children to enter into more competitive education which they otherwise would not have been able enough for. I do believe there may be some parents who get their children labeled with disabilities in order for them to be able to compete. However, doesn’t that mean that schools are just too focused on competition rather than individual differences? If you need a diagnosis to get your idnividual strengths and weaknesses recognized, isn’t that the problem rather than parents seeking that diagnosis?

I have always, ever since I first self-diagnosed with autism in 2002, believed that, if a child doesn’t cope, either the child has something going on or the system is screwed. I have always advocated for more individualized educational programming, but this doesn’t happen yet.

Mind you, I disapprove of parents seeking labels for their child – or adults seeking a label for themselves – just so they can get into special ed, collect disability benefits or the like. That’s not fair and if it happens, it needs to stop. This is however talking extreme examples. With how restrictive the special education and benefits systems are these days, I don’t believe many people would be able to fake themselves or their children into them. Where accommodations at home or at school are concerned, I don’t think anything is wrong with demanding them. Like I said, the need for labels to qualify for them, is the problem.

Some people see me as “working the system”, too. They don’t deny that I’m disabled – they can’t deny my blindness -, but they do deny that I’m as disabled as I claim to be. I asked for a second opinion when I was given a diagnosis that by some is perceived as meaning I misuse the system. Now dependent personality disorder is a genuine mental health condition, not willful behavior, but even my psychologist has some trouble seeing that. Treatment for DPD is not a kick in the behind to solve your own shit, but even my psychologist has some trouble seeing that, too.

In my case, the DPD diagnosis resulted from the same flawed logic that might get parents to seek learning or behavioral difficulty diagnoses for their children: the need to always have a label to explain every single need a person has. The occupational therapist from the blindness agency said my difficulty making tea wasn’t due to blindness. Another occupational therapist said it wasn’t due to motor difficulties. My psychologist assumed there are no executive functioning diffiuclties, so it wans’t due to that either. Since there needs to be some explanation, my psychologist decided to consider it a sign of dependence and to label that dependence DPD. As a side note, my husband tried to make tea with his eyes closed and it was way harder than it is with his eyes open.

I am often told that I desperately want to be different and that’s why I seek an autism diagnosis. I do see myself as different indeed, but I don’t need an autism diagnosis for that. There’s “highly sensitive”, “introverted”, “intellectually gifted”, and probably others that don’t require a shrink. I don’t even seek an autism diagnosis specifically – I seek recognition of my impairments.

Like I said, I have always felt that, if I fall through the cracks with the support I do get, either something’s wrong with me or something’s wrong with the support system. If blindness could get me the support I need, I wouldn’t have sought a mental diagnosis. For your information, it wasn’t me who sought my first autism diagnosis in 2007. They were professionals working with the blind. If I am just a lazy, unmotivated fatass who willfully misuses the system, I shouldn’t even get a DPD diagnosis – the label for that is malingering.

Back to pushy parents. It is my firm belief that there are as many parents who ask for labels their child doesn’t need, as there are parents who deny their child labels they do need. The solution to both is individualized support.

Hooked on Labels - responses & other relevant posts linky

Thoughts on Self-Diagnosis by #ActuallyAutistic People #SelfDXIsValid

Today, Autistic Zebra wrote an interesting post on self-diagnosis by autistic people. They are a self-diangosed autistic who have no intention of seeking an official diagnosis. They embrace the hashtag #SelfDXIsValid on Twitter, a hashtag used to make it clear that you don’t need a professional diagnosis to be autistic.

I was “self-diagnosed” for years before my official diagnosis in 2007. At the time, I didn’t like the word “self-diagnosis”, because it presumed people who “self-diagnose” are akin to professionals making an official diagnosis. I felt people should state, as is the norm in the Dutch autistic community, that they suspect they are autistic. I myself didn’t even want to post to a main autism forum, even though I’d been reading it for a few weeks, till the day I got my official diagnosis.

Years went by in which I remained officially diagnosed. I had no problem with self-diagnosed people, even though I (not always consciously) often saw them as less obviously autistic than I saw those who had an official diagnosis. The reasoning was that, if they were struggling as badly as those who needed an official diagnosis were, they would’ve been formally diagnosed. I based this reasoning upon the way I had myself been diagnosed: I was falling apart and the staff at the home I lived at at the time, sent me for diagnosis. Now I realize how lucky I was to have had staff who suspected autism in me and not, say, dependent personality disorder.

Now that I’m no longer formally diagnosed as autistic, I can see that not everyone who struggles with autistic issues can get a formal diagnosis or gets one right away. I do not struggle any less than I did when I still had an official diagnosis.

I am also more aware that professional diagnosticians are human too with their own weaknesses and strengths. Some use “clinical judgment” only, like my current psychologist. She flat out denies I can or should receive any testing. Others rely heavily on testing or on developmental interviews. Professionals also have different areas of expertise. My first diagnosis was made under supervsion of the psychiatrist at the autism center in the city I lived in at the time. My second diagnosis was also made by a psychologist with expertise in autism. My third official diagnosis, which was partly based on the second, was made by a psychologist with mainly expertise on blind people.

When I lost my formal diagnosis, I became incredibly distressed. It wasn’t helpful that some autistic people said that no longer having a formal diagnosis meant I wasn’t autistic after all (and had never been). Supposedly my nine years in a mental hospital made me act autistic (desptie the fact that I was first diagnosed before I was hospitalized). Some of these people also twisted my words by saying I was going for a “second or how-many-have-you-had-already opinion”. The truth is none of my diagnostic assessments or changing diagnoses were at my own request, except for the current second opinion I’m waiting for. Besides, if three diagnosticians say I’m autistic and one says I’m not, apparently that one last diagnostician is right and those how-many-have-I-had-already who validated my autism “self-diagnosis” are not.

Of course, there may be people who self-diagnose who aren’t actualy autistic. However, by the logic that I’ve been hearing over the past half a year, there are also officially diagnosed autistics who aren’t autistic after all. Indeed, I did not suddenly become non-autistic when my psychologist dropped my diagnosis. Either I am still autistic or I never was.

Dear Psychologist: Why I Believe I’m Autistic (And Why It Matters)

My psychologist wrote the referral letter for my second opinion last Wednesday. Because this second opinion thingy is now becoming real, I have been thinking of why I believe I’m autistic after all – and why it matters. I have tried to explain this quite a few times already, but nobody amongst my staff seems to understand. Because some of my readers just might actually get it, I’m writing it on my blog. I chose to write this in the form of an open letter to my psychologist, but I’m not sure I’ll ever consciously point it out to her.

Dear Psychologist,

You have been telling me ever since you became my responsible clinician in late 2014 that you don’t believe I’m autistic. You initially said brain injury explains my symptoms far better, but you seemed not to care. We needed to treat symptoms, not syndromes, you said. Yet last summer, you changed my diagnosis. And you changed it again. And again. You claim this was at my request. Fair enough, I told you I wasn’t happy with just a borderline personality disorder and adjustment disorder diagnosis and I wanted a second opinion. However, it was you who offered to change my diagnosis to brain injury-related personality change, apparently to avoid me getting a second opinion. I was stupid enough to go along. The further diagnostic changes were solely your responsibility.

Yes, I told you it doesn’t matter whether my diagnosis is borderline personality disorder and adjustment disorder or dependent personality disorder, BPD traits and depressive disorder NOS. To me, neither diagnosis explains why I’ve been having problems all my life. After all, personality disorders first become apparent in a person’s teens or early twenties, not when a person is a young child.

There were – or at least, there should’ve been – many signs of a developmental disability when I was young. Even things that my parents tout as signs of genius, should when combined with the signs that point to delay, signal a developmental disability. Like my ability to calendar calculate. Or my first word. It was “aircraft industry”, echoed from my grnadpa when I was ten-months-old (seven months corrected).

These are cute factoids about me. They don’t necessarily signal autism when taken alone. Then there are the signs that point to delay. I had motor skills delays, but these could be due to dyspraxia or mild cerebral palsy. My parents don’t know whether these were ever labeled as such. I was a toe-walker – still am when stressed. Though I walked on time (at fourteen-months-old), I didn’t sit or roll over without physcal therapy intervention.

My language development was quite advanced. I did reverse pronouns, but my parents say this happened only for a short while. I took many things literally growing up. I also had one word that I’d use obsessively and often out-of-context after another. The psychologist who diagnosed me with Asperger’s in late 2007 brushed this off because I couldn’t come up with examples right then. I can now, but I don’t have the energy to elaborate in English.

My social and emotional development was delayed from a young age on. Even though I didn’t have many meltdowns or temper tantrums until I was about six, I did have my problems. I couldn’t talk to children my age. I had trouble forming friendships. I was even more self-centered than any young child.

When I became aware of my differences, I started acting out. Educational psychologists blamed this on my difficulty adjusting to blindness. What if I’d become aware of my social difference then, too? Even though I didn’t start regularly having temper outbursts till I was about six, I remember head-banging and hand-biting from a younger age. I also had this crawling movement in bed that parents of other kids went to the doctor for when the children were toddlers. Well, let me tell you I did this till I was nineteen.

When I became a teen, I had many more difficulties. One could no longer blame my high IQ, because I was in a high-level high school were 30% of the students were intellectually gifted. Maybe then I did it all because I’m blind, even though no-one at the school for the blind had displayed these behaviors either. Or maybe I was precocious for developing a personality disorder. I guess your logic would go like this.

I could give you dozens more examples of why I believe I’m autistic. I have been thinking on these for the last few days. Many, however, are just too embarrassing to go on my blog.

My parents may not be involved with my care now, but you never asked them participate in a developmental interview. Not that I’d want you to do an autism assessment on me, after all the flawed arguments you’ve spun. You won’t believe that someone with hydrocephalus can be autistic, even though there’s plenty of literature showing that they can. You won’t believe that preemies are more likely to develop autism than children born full-term. I even didn’t bother correcting you when you wrote in my referral letter that I had had a stroke. News flash: an intraventricular hemorrhage, which is the most likely cause of my hydrocephalus but was never ascertained, is not a stroke. I don’t expect you, a psychologist, to know the difference, but then at least stop basing your diagnosis on it.

But you’ll say we should look at symptoms, not syndromes. You’ll say it doesn’t matter for my care whether I’m diagnosed with brain injury, even if it isn’t in my DSM-IV classification, autism or a personality disorder. To be honest, the main reason this whole diagnosis thing is important to me, isn’t care. It’s understanding. I need recognition of my struggles. I need to know I’m not the only one. As much as you hate this, I need something I can google and join support groups for. I’m tired of shooting in the darkness. Granted, care matters too. Personality disorder patients have far fewer self-care problems than autistics and warrant a totally different approach. I wouldn’t mind that approach if it turly worked for me, but it doesn’t. However, I don’t mind having a personality disorder diagnosis along with autism – I had one for nearly three years.

You won’t understand a thing about autistic culture. I won’t explain. I don’t have the spoons for that. (Google the spoon theory if you want to know what I mean, if you even care.) Suffice it to say that autism is not just a disorder – it’s an identity. It’s something, unlike brain injury, that is part of us before we’re old enough to realize it. It’s not a disease – it’s a part of who I am.

Hannah Spannah

A Call to Revive the Concept of “Cousins” in the Autistic Community

Today, I was rejected from a Dutch autistic women’s forum. I had already been kicked off last August for having lost my formal autism diagnosis, but had reapplied because I am in the process of getting a second opinion. Back then, my losing my diagnosis had stirred up a lot of commentary as to why I’d been presenting as autistic for six years – the time that I’d been a member of the forum – if I wasn’t. Well, for one thing, that’s just one professional’s opinion that I’m not autistic, while three others said I am. Not recently, but since when does one lose an autism diagnosis as one ages? However, the fact that the admins doubted I’d get anything but suspicion and hostility if I came back, prompted them to reject me for good. Thankfully, people in other autism groups, especially international ones, were still welcoming and supportive.

Then I read Mel Bagg’s blog post from last month, which was on the subject of autistics and “cousins”. A “cousin” is someone who is not autisitc, but who has some significant experiences that are similar to those experienced by autistics due to a related condition. For example, Mel Baggs tells the story of a person with hydrocephalus who could relate to many of the social and communicative difficulties that autistics experience, but wasn’t autistic. As I have hydrocephalus myself, this struck a chord with me.

Mel Baggs”post is a call to revive the concept of “cousins” in the autistic community. I applaud this, for it’d finally mean I could fully feel in place in the autistic comunity again. I mean, autistic communities used to ask that no neurotypicals join or participate. now they’re asking allistics – a term I’d never heard of but which means non-autistics – to keep out. Though most internatoinal communities who state allistics are not allowed, welcome self-diagnosed autistics, I still feel a bit left out.

Like Mel Baggs says, the autistic community can be very excluisionary. An example is the Dutch forum I got kicked off from. I didn’t know this until I lost my diagnosis, but apparently it has the rule that people who suspect they’re autistic get a year to get a formal diagnosis and if they don’t get it, they’re out. I mentioned this is a women’s forum for a reason, because women have a particularly hard time getting formally diagnosed. The other main Dutch autistic community, open to all genders, doesn’t ask for a formal diagnosis. Another act of exclusion applied by autistic communities is the assumption that Aspies (people with Asperger’s Syndrome) are somehow fundamentally dfferent from other autistics, and subsequently the creation of Aspie-only spaces. Other groups allow “high-functioning” autistics in only. This, obviously, perpetuates the division of the autistic community, which perpetuates discrimination. For example, if Aspies are fundamnetally different from other autistics, people can use the idea that Aspies are not really disabled, which is populated by some, to exclude anyone they see as an Aspie from protection by laws like the ADA. They can also continue advocating for harmful “treatments” against autistic people’s wishes based on the idea that autistics who can advocate for themselves are not “autistic enough”. I don’t say that the autistic community is responsible for discrimination by non-disabled people. I do say that those who exclude some people from the community based on being “not really autistic”, “not autistic enough” or too “low-functioning” or “high-functioning”, do contribute to it.

Back to “cousins”. The criteria for autism keep changing over time. I easily met DSM-IV criteria for Asperger’s Syndrome. I probably meet DSM-5 criteria for autism spectrum disorder too. However, I also have hydrocephalus, which according to my current psychologist, means I can’t be autistic. I believe DSM-IV might agree, though DSM-5 definitely doesn’t. Does the fact that I meet the criteria for an autism spectrum disorder, mean I’m legitimately autistic, or does the fact that I have hydrocephalus, mean I’m not? Really, that shouldn’t matter, if “cousins” are welcomed into the autisitic community again. After all, what counts then is not diagnosis or self-diagnosis, but whether I relate to the lived experience of autistic people. It also means the community can no longer be divided along the lines of stereotypes, formal diagnosis or the lack thereof, or suchlike. Everyone who shares the experience of social and communication problems, is welcome. This in turn means we can form a better front against discrimination, because we no longer fall into traps like being accused of not being disabled enough for protection.

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.

My (Somewhat Hypocritical) Opinion on Force in Mental Health and Developmental Disability Services #Write31Days

31 Days of Mental Health

Welcoem to day 25 in the 31 Days of Mental Health. Today, I’m inspired by yet another question from the 30-day mental illness awareness challenge. For day 25, the question is about your opinion on force or coercion in mental health.

I used to be a strong opponent of any form of coercion in mental health. I remember once in late 2007, when I was still on the acute unit, a fellow patient being medicated against their will. I saw this as a particularly nasty violation of the patient’s human rights, worse than for example seclusion. Now I know that for some people, if they have to choose between seclusion and rapid tranquilization, their choice is not always seclusion.

I used to believe, in my naivety that there is always an alterantive to force in mental health. I still believe there is in most cases. For example, studies of involuntary outpatient treatment don’t compare the programs to the same level of care but without the component of force. If they did, maybe it’d be shown that there is no advantage of forced treatment, and it is just the intensity of care that makes the difference. In this light, I remember one particularly poignant interaction I had with a nurse on the acute unit. She said that I’d be secluded if I needed more care than they could provide. Indeed, involuntary outpatient treatment is generally seen as a way of averting hospitalization. Now I’m not a big fan of psychiatric hospitalization, but I cannot help but believe involuntary outpatient treatment is just a convenient (for the providers and the government) way of saving money. So are most forms of force in mental institutions, as my interaction with the nurse illustrates.

Of course, a few people cannot be kept safe even with constant one-on-one attention, assuming the government would allow this. A notable example is the case of Brandon, a young man who had been restrained in his institution for people with developmental disabilities for years when the newspaper got word of it in like 2010. I was infuriated at such inhumane treatment as restraining a person for years, but my husband and many other people I spoke to countered that there simply was no alternative. Medications hadn’t helped (and besides, that’d be another form of force) and Brandon was so aggressive that he’d attack anyone coming close.

That being said, still, in many cases, force in mental health and developmental disability care is used as an alternative to proper care. I remember one example that I read about at the time Brandon’s case was in the news. A proponent of electroshocks as aversive therapy for people with severe self-injurious behaviors presented the case of a person who was hitting his eyes so vigorously that he was at risk of becoming blind. He described the situation of the nurses conferring at the nurse’s station while the man was blinding himself in the next room, adding something like: “And what quality of life does a person with an intellectual disability who is also blind have?”

I cannot begin to tell you all the things that are wrong in this situation. Nurses sit at the nurse’s station conferring (or drinking coffee) way too much rather than taking care of their patients. We do not know whether one-on-one attention would’ve prevented this man from blinding himself, because there was none. INstead, his treatment team chose to set him up with a shock machine. In addition, I totally understand a sighted, intellectually capable person’s judgment that an intellectually disabled person who is blind has no quality of life. However, the proponent of shock therapy hardly considered the effect whatever causes this person to self-injure has on his quality of life, possibly multiplied by the effects of electroshocks. We do not know whether the person in question had a painful medical condition. I assume the cause of his self-injurious behavior was unknown or could not be taken away, but I’ve heard parents and professionals advocating for aversives or restraints when the cause of problem behavior is known and can be removed.

I do use some double standards though. Being in a mental institution myself, and especially having seen some of the more severely mentally ill people, I have lost some of my naivety regarding forced treatment. Perhaps less self-righteously, when soemone bothers me, I’m happy to have them secluded, restrained or medicated. There are some people on my unit who are very regularly verbally aggressive or simply very annoying when psychotic. In those cases, though I would like to say I oppose force, I’ve actually been relieved when the nurses gave these people some PRN medication, often with only some sembleance of consent. I would like to believe that the guys who constantly talk to their voices are actually helped by a low-potency neuroleptic, but at least I do not know whether these people are bothered by their voices and if so, whether the PRN medication actually quiets their voices. I should care, but when it’s past 10PM and I want to sleep, quite frankly I don’t.

Autistic Adults and Independence

I skipped a day of the September blog challenge because I was at my parents’. I had a good time. Today I came down with a cold, so am not really in the mood for writing, but I’ve got to keep up with the blog anyway. Besides, I just have to write my own spin on autism and independence, which Pam Byrne wrote an interesting post on.

Pam is the mother of an autistic adult with signifcant care needs. Though I am probably more capable in some ways than Pam’s son Alex, I am an autistic adult with significant care needs. I used to also be an autistic advocate, fighting for the rights to proper care and services for autistic adults. I always said autistics should be allowed to live and work in the community. It took myself being institutionalized to learn that society isn’t prepared for that. Of course, we should fight to get society prepared, but not every autistic person or parent of an autistic person has the resources and time and energy to do so. I bet most do not.

I remember back in 2010 or 2011 reading some research that said most autistic people attain a relatively normal level of independence, but do so around ten years later than most neurotypical people. I do not remember whether the research included autistics with co-existing intellectual disability or other additional needs. Even if it did, there still will be a significant number of autistic adults who do not reach expected levels of independence. For example, as Pam also says, the unemployment rate among autistics is about 70 to 80 percent. You could again put this down to discrimination. I won’t. After all, even the most willing employer could not employ me.

Maybe if I’d gotten early autism intervention, I would’ve been more independent than I am now. Maybe. Maybe not. Maybe it wouldn’t have made a significant difference, because my biggest problem is not a lack of practical skills. It is the fact that it’s not safe for me to be without access to support.

Of course, we need to teach autistic children and adults the skills to become the best they they can be. However, there are some skills some autistic people will just not learn. We could advocate for more applied behavior analysis training for older children and even adults with autism. I won’t. I don’t have the energy to go into all the things that are worng with ABA. Let me just say that I for one am completely overwhelmed with intensive skills training. Instead, we need enough supports to make sure autistic people can live a fulfilling, satisfying life.

Everyday Gyaan