Tag Archives: DSM-IV

My Diagnostic Rollercoaster Ride #BADD2017

Today is Blogging Against Disablism Day. It would also have been my discharge date from the mental institution. Unfortunately, virtually no after care has been arranged yet. This didn’t keep my psychologist from determining I could leave today, even despite my husband sending her an E-mail voicing his disapproval on Tuesday. I had my “exit meeting” on Wednesday. In this meeting, my psychologist explained that every other time, she and the social worker can get after care arranged within a month, so if we couldn’t get it arranged within three months for me, that was my fault. Apparently, they’d handed me the responsibility of arranging for my own after care, only without telling me. The patient advocate couldn’t do anything, because I’d have my first appointment with community mental health on Friday and that was all my psychologist was legally required to do in the way of after care. I called my mother-in-law in a panic. She convinced my psychologist to give me one more week in the institution. My definitive discharge date is May 8.

Today I also had my conclusive appointment for the independent second opinion/re-assessment I requested regarding my diagnosis. I haven’t yet seen the report, as the psychologist has yet to finish that, but she did tell me her conclusions. I am happy to share that I got my autism diagnosis back!

It’s pretty unreal. I feel the same way I felt when I was first told I had been diagnosed with dependent personality disorder. Only this time the dreamy state I’m thinking I’ll awaken from any moment, isn’t a nightmare. That’s not to say the psychologist’s opinions are all fluff. In fact, though she didn’t say this, it may be the psychologist agrees with my DPD diagnosis. Not that I care much, since the recommendations she made for reinforcing my independence were pretty good. Besides, by now I’ve been used to being seen as one little piece of learned helplessness. I guess that’s a form of learned helplessness itself.

It’s been one awful rollercoaster ride this past year or so. It started in late June of 2016, when my psychologist pulled me out of day activities to casually inform me she had changed my descriptive diagnosis. Since the Dutch health system is built around diagnosis-treatment combinations, I worried some. However, your DSM-IV (we still use DSM-IV here) classification, not your descriptive diagnosis, determines what care you can get, and my psychologist hadn’t said she’d changed my DSM-IV classification. She had, but I didn’t find out about that till more than a month later.

I remember vividly that same day telling a day activities staff at a place I wanted to do day activities at once discharged, that I was stuck in diagnotic limbo. Interestingly, I made an appointment for a formal intake interview just an hour before my appointment with the independent psychologist.

Then came the process of applying for an independent second opinion. I faced a lot of hostility during this process and I don’t just mean from my psychologist. I mean, my psychologist tried to keep the peace and calm by negotiating a diagnosis we both could live with. In hindsight, that’s the strangest agreement I’ve ever come to. However, the worst hostility came from within the Dutch autistic community. I was a member of a Dutch forum, where apparently you had to have an official diagnosis or be in the process of obtainng one to get in. Once I posted about my psychologist removing my autis diagnosis, my psychologist was treated like the ultimate autority on my diagnosis and the person who finally unmasked my manipulative nature. When I said I had been diagnosed autistic three times before, this was used against me. After all, how many second or third or fourth or fifth opinions do I get?

By early December, when I was denied access to said autism forum for good, I started taking into account the possibility that the independent assessor agreed I’m not autistic. I never fully got that into my system and that was what kept me going: I still had hope that my self-image wouldn’t be shattered to pieces. That I wouldn’t have to nearly drown for the rest of my life because my every support need is just dependency.

During January till mid-April, I sank to the lowest point I’ve been at for a long time. I was depressed and suiciidal and making plans for a final step. Because this was when my assessment took place, the psychologist believes I have depression. I clarified today that, while I’m always slightly depressed, it isn’t at clinical levels most of the time.

I am so glad the outcome of my assessment is as it is. Now I still need my new community treatment team to take into account this diagnosis. I’d rather not endure another rollercoaster ride like this.

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

Diagnonsense, Oh Diagnonsense!

A few months ago, I wrote about my changing diagnosis. My autism diagnosis that’s been confirmed three times since 2007, was removed. That left me with just borderline personality disorder (BPD) as a diagnosis. If you thought I gracefully accepted this, you do not know me. I consulted with the patient liaison person at my institution, who recommended I seek a second opinion at another hospital. Now, three months on and we’re back at square one, and it’s not because an independent provider agreed with my psychologist.

On August 15, I talked to the patient liaison person, who on that same day E-mailed my psychologist asking her to make the necessary arrangements for me to get a second opinion. Instead, my psychologist told me she wanted to contact a psychiatrist at the brain injury unit first to inquire about the diagnosis of autism in people with brain injury. This doctor told her that indeed autism shouldn’t be diagnosed in people with brain injury, but the same is true of BPD. My psychologist would need to diagnose personality change due to a general medical conditon instead. I stupidly agreed with her changing my diagnosis herself rather than sending me to an independent psychiatrist or clinical psychologist.

My psychiatrist, who is the head clinician responsible for my care, however, disagreed with my psychologist’s diagnosis. My named nurse said they were throwing around all sorts of diagnoses at my treatment plan meeting last month. Eventually, my psychologist informed me they’d settled on dependent personality disorder, borderline personality disorder traits and a developmental disorder NOS. I hate the DPD label, but can see how I might have some of its features. I needed to see my treatment plan to see what they’d meant with developmental disorder NOS, which isn’t a diagnostic code in DSM-IV unless prefixed by “pervasive”. That would essentially mean autism. As it turned out, they hadn’t settled on this diagnosis, as the developmental disorder was gone.

Instead, I now have DPD, BPD traits and depressive disorder NOS. I asked my psychologist whether this was a coding typeo, but it wasn’t. Her explanation was that I may formally meet the criteria for this, but the main reason for the diagnosis is for insurance purposes. You see, I can’t be in the mental hospital without a diagnosis on axis I (anything that isn’t a personality disorder). A nurse even twisted my psychologist’s actions like she’d done me a favor.

Last week, when I found out my final diagnosis, I lost it pretty much and was considering checking myself out of the institution. My psychologist was called, because the nurses thought I said I was definitely leaving, which I can’t remember having said. My psychologist encouraged me to leave right then, which I refused. My husband instead came to pick me up thee nxt day for a night at home to have some distance.

Today, I spoke to the patient liaison person again. She was not happy at the fact that my psychologist had failed to cooperate with me in getting me a second opinion. This essentially means we’re back at where we started and I’m probably going to ask my psychologist to get me a second opinion again soon.

Diagnonsense Once Again

A few weeks ago, I wrote about my disappointment at not finding the right day activities or home support. Unfortunately, it didn’t end there. Over the past few weeks, I have been finding out about the details of my changing diagnosis. Or rather, diagnonsense, as it’s all extremely odd. Let me explain.

In late June, my psychologist pulled me out of day activities to inform me she had changed my descriptive diagnosis. A descriptive diagnosis is a brief description of what’s wrong with the patient, which should be a little more personalized than the patient’s DSM-IV (we still use DSM-IV here, which is weird enough) classification. Her descriptive diagnosis was mostly okay’ish, with one exception: she said that autism as well as dissociative identity disorder and PTSD had been previously diagnosed, but these weren’t too clear. At first, I thought she meant just the DID/PTSD wasn’t clear. I was wrong. She had, in fact, removed autism from my diagnosis.

Now I have been assessed for autism three times in the past and was diagnosed with it all these three times. There were some questions as to whether some of my problems are due to blindness, but overall it was clear that there was more that was going on with me and this “more” is most likely somewhere along the autism spectrum.

I however was also born prematurely and had a brain bleed leading to hydrocephalus (“water-on-the-brain”) as a baby. This was known to all people who previously diagnosed me as autistic and my first diagnostician even added hydrocephalus to axis III (for physical health problems) of my DSM-IV classification. This was when I was in outpatient treatment. For some reason, hydrocephalus was never on axis III while I was hospitalized. It still isn’t. Yet my psychologist says she cannot diagnose autism because of the complications associatedd with my premature birth. Never mind that there is an enormous amount of literature showing that former preemies and children with infantile hydrocephalus are more likely to be autistic than those without these experiences.

Now like I said, my psychologist didn’t add hydrocephalus, neonatal brain injury or anything like that to my diagnosis. She did briefly mention it in my descriptive diagnosis, but it’s your DSM-IV diagnosis which determines your “diagnosis-treatment combination”, ie. what care you’ll get. My DSM-IV classification now lists borderline personality disorder as my diagnosis. Oh and adjustment disorder, which my psychologist says explains why I can’t handle changing situations. It doesn’t. An adjustment disorder is an extreme, disabling response to an identified stressor. For example, when I lived independently and this caused me to land in crisis, I was diagnosed with adjustment disorder to justify my hospitalization. Back then, adjustment disorder was a justified cause for care under the basic (mandatory) insurance pacakage. It no longer is. Long story short: essentially, I’m stuck with just a borderline personality disorder diagnosis to base my care on. It doesn’t seem to matter that BPD is an adult-onset disorder and I’ve had problems all my life. It doesn’t seem to matter that BPD doesn’t explain my sensory and cognitive overload. Oh wait, maybe that’s just me trying to manipulate people into not exercising their right to overload me.

Defining Mental Illness #Write31Days

31 Days of Mental Health

For my first post in the 31 Days of Mental Health series, I will discuss how mental health conditions are diagnosed. As you probably know, there is no objective test for mental illness, like a blood or urine test. The diagnosis of mental illness is based on the symtpoms and signs a patient presents with.

The main classification system for mental disorders in use in th United States and elsewhere is the Diagnostic and Statistical Manual of Mental Disorders (DSM), published by the American Psychiatric Association. In 2013, the fifth edition, DSM-5, was published. However, some countries, like the Netherlands, still use the previous edition, DSM-IV.

DSM-IV uses a multi-axial system of diagnosing mental disorders. There are two axes for mental disorders: Axis I for clinical disorders like depression, schizophrenia and ADHD, and axis II for intellectual disability and personality disorders. The reason for the existence of axis II is that the creators of DSM-IV felt that intellectual disability and personality disorders are particularly hard to treat and relatively stable over time. Later research found this is not necessarily the case for certain personality disorders in particular. In DSM-5, personality disorders and intellectual disabiltiy are listed under the same section as other mental disorders.

In DSM-IV, there are three more axes for diagnostic classificaiton: Axis III for physical disorders, axis IV for psychosocial and environmental factors, and axis V for one’s global assessment of functioning (GAF) score. This score indicates how well or ill a person is in general. A GAF score of 100 indicates excellent mental health, while a GAF score of 50 indicates severe symptoms or severe impairments in one area of functioning (eg. work, school, social life). A GAF socre of 1, the lowest score, indicates persistent danger of seriously harming self or others. My GAF socre is 40, meaning some problems in reality testing or communication or significant impairments in more than one area of functioning.

The GAF score is, as the name suggests, a global scale. As such, it does not determine how severe each disorder a person may be diagnosed with is. Also, if a person has problems in maintaining their personal hygiene, they automatically get a lower GAF score than those who have problems functioning at work or school. It is apparently thought that, if you neglect your personal hygiene, you will be unable to function at school or work. This at least hasn’t been the case with me. In DSM-5, the GAF scale was dropped and severity can be coded for each disorder a person has been diagnosed with. The World Health Organization (WHO) Disability Assessment Schedule is included in the assessment tools section of DSM-5.

You may’ve noticed that I mostly refer to mental disorders, not mental illnesses. The word “mental illness” is not used within the DSM, rather, DSM uses the word “mental disorder” to encompass all conditions listed in their classification system (with some exceptions, eg. medication-induced movement disorder). A mental disorder is defined in DSM-5 as a syndrome characterized by clinically significant disturbance in a person’s cognition, emotion regulation or behavior. It reflects a dysfunction in the psychological, biological or developmental processes underlying mental functions. Mental disorders are usually associated with significant distress or disability in social, occupational or other important activities. An expected or culturally approved response to a stressor, such as the loss of a loved one, is not a mental disorder. Religious, political or sexual deviance or conflicts between the individual and society are not mental disorders, unless the conflict originates primarily within the individual.

A mental disorder is not the same as a need for treatment. Need for treatment is determined through a complex process of assessment of symptom severity, presence of certain symptoms (eg. suicidal ideation), the person’s distress or disability related to their symptoms, risks and benefits of available treatment, and possibly other factors (eg. if a person’s mental disorder impacts another illness). Because of this, people who do not meet all criteria for a diagnosable mental disorder but who demonstrate a clear need for care, may be taken into treatment.

Section II of the DSM-5 describes all mental disorders that are currently being recognized by the American Psychiatric Association. Mental disorders, for clarity’s sake, include neurodevelopmental and neurocognitive disorders (eg. autism or dementia), addictions, as well as those disorders more commonly thought of as mental illnesses. Personality disorders are not always seen as mental illnesses. For example, in the UK’s Mental Health Act, they are called “psychopathic disorders”. Nonetheless, I see both personality disorders and disorders such as schizophrenia and depression, as mental illnesses.

Impulse Control Disorders

In 2008, I read my treatment plan one day and saw my DSM-IV diagnostic classification. I had not only been diagnosed with Asperger’s Syndrome, which I already knew. In addition, I had been given a diagnosis of impulse control disorder not otherwise specified. This diagnosis has since been taken off my records, for which I am thankful, since my idea of the disorder was pretty negative. Since one of the writing prompts on Mama’s Losin’ It for this week is to write a post inspired by the word “impulsive”, I thought I’d educate you about impulse control disorders.

In DSM-IV, the psychiatrist’s diagnostic manual in use at the time of my diagnosis (and still in use in the Netherlands now), impulse control disorders make up their own diagnostic category distinct from disruptive behavior disorders and personality disorders that may include impulsive and/or antisocial behavior. It was in fact made very clear to me by an educated peer that impulse control disorders are quite different from antisocial behavior, because the underlying idea behind impulse control disorders is that you have little control over your impulses. Those with disruptive behavior disorders (eg. conduct disorder and oppositional defiant disorder) willfully misbehave.

The treatment, I found out, is also quite different. Whereas those with conduct disorders need to be punished for their behaviors, those with impulse control disorders need to learn what sets them off, so that they can prevent their impulsive behaviors. This is significant, because at the time of my diagnosis, I still resided on a locked unit and had seclusion used against me to “get me to take responsibility for my behavior”. Now seclusion and other restrictive behavior management techniques cannot legally be used as punishment anyway. I am, instead, all for expecting people who display aggression to make up for the damages they cause.

So what is an impulse control disorder? In DSM-IV, impulse control disorders included kleptomania, pyromania as well as pathological gambling. Pathological gambling is now, in DSM-5 (the current edition of the psychiatrist’s manual), classified as a behavioral addiction, but kleptomania and pyromania are still listed as impulse control disorders. The category in DSM-IV also includes intermittent explosive disorder (IED), the disorder which I was most close to meeting the criteria of.

IED is described in DSM-IV as characterized by several discrete episodes in which the affected person is unable to resist aggressive impulses. The aggression leads to serious assaultive acts or destruction of property. The aggression displayed during these episodes is grossly out of proportion to the psychosocial stressor(s) that may’ve led to it. The disturbance is not better explained by any other mental disorder (eg. antisocial or borderline personality disorder, conduct disorder, ADHD, psychosis or mania) and is not due to the direct physiological effects of a medication used or a substance of abuse.

In DSM-5, impulse control disorders such as kleptomania, pyromania and IED are lumped together with conduct disorder, oppositional defiant disorder and even antisocial personality disorder. The authors of the chapter on disruptive, impulse control and conduct disorders do make it clear that there is a distinction between an inability to control one’s emotions (like anger in IED) and disruptive behaviors (as in conduct disorder). They however seem to mean that in all disorders in the chapter, there is some focus on both emotional and behavioral dysregulation.

How are impulse control disorders treated? For IED and other impulse control disorders, antidepressatns have been found somewhat effective, although none have been approvd by the FDA. In one study cited on Wikipedia, people with IED responded relatively well to particularly fluoxetine (Prozac). In addition to medication, cognitive-behavioral psychotherapy is used. People with IED need to learn to relax, use alternative coping skills and resist aggressive impulses. Psychoeducation about their disorder in a group setting can also help.

IED, for clarity’s sake, does by definition lead to aggression and may lead to criminal behavior. It, therefore, does cause a disruption to other people’s lives and may lead to violations of societal norms. With my focus on an inability to control oneself rather than willful misbehavior, I did not mean to minimize the suffering others experience at the hands of someone with IED. I have not been physically aggressive towards people since adolescence, but this is one reason I was diagnosed with an impulse control disorder not otherwise specified.

Mama’s Losin’ It

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A Lighter Shade of Blue?: Dysthymic Disorder

Most people think they know what it’s like to be depressed. We’ve all had a day or two when we’ve felt down and hopeless, had a hard time sleeping at night and dragging ourselves out of bed in the morning, and had a decreased or increased appetite. While these all are symptoms of depression, in major depressive disorder they are severe and occur for weeks or sometimes months on end. They also manifest as a clear deviation from one’s normal functioning

On the surface, dysthymic disorder (or dysthymia) seems less severe, which is why I’m using the metaphor of a lighter shade of blue. Dysthymic disorder, as it was described in the previous edition of the psychiatrist’s manual, DSM-IV, manifests itself in a depressed mood most of the day, on more days than not, accompanied by at least two of the following symptoms:

  • Poor appetite or overeating.

  • Insomnia or hypersomnia.

  • Low energy or fatigue.

  • Low self-esteem.

  • Poor concentration or difficulty making decisions.

  • Feelings of hopelessness.

However, while the symptoms of major depression need to last for at least two weeks, those of dysthymia last for at least two years (or one year in children and adolescents). Therefore, while everyone can probably tick off some (or even most) of the symptoms mentioned above every now and again, that is quite different from having dysthymic disorder. I have had symptoms of depression on many occasions, but I can’t say I’ve had them for most of the time persistently over a two-year period.

In the current edition of the psychiatrist’s manual, DSM-5, dysthymic disorder has in fact been replaced with persistent depressive disorder. This category includes both the “lighter shade of blue” of dysthymia, as well as chronic major depression. After all, the creators of DSM-5 felt there is no meaningful difference between chronic major depression and dysthymia. The difference between persistent depressive disorder and major depressive disorder is, thereby, no longer one of severity but one of pattern or course of development. In major depressive disorder, individuals tend to relapse and remit (get better and worse). Persistent depressive disorder tends to linger for years.

I do not have dysthymia. Why, then, am I writing this post? Quite frankly, just for the sake of raising awareness. When I found out that Mumturnedmom’s prompt for this week is “blue”, this is what I thought of. I hope I have educated a few people, including myself. I am a member of some groups on Facebook for depression, and I don’t know that I should be. I, after all, do not know what it is like to be severely depressed or persisistnetly depressed for a long time.

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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.

What Does Mild Autism Mean?

Yesterday, I had a discussion with a nurse, who said that I am very mildly autistic, if I’m autistic at all (which she can’t comment on of course). This got me thinking, because I know that in some respects, I’m not stereotypically autistic, but then again, that’s not the same as not being significatly affected by autism, is it? I am for this reason posting an updated version of a post I wrote several years ago about what mild autism is. I wrote a list of common assumptions similar to the one on high-functioning vs. low-functioning autism, and am going to add some more.

  • Mild autism means Asperger’s Syndrome. This is a common assumption among auitsm advocates trying to discredit people with an Asperger’s diagnosis. Indeed, it is true that people with Asperger’s diagnoses in DSM-IV-TR must not have significant impairments in cognitive or language abilities, but having an IQ above 70 and being able to speak, says little about real-life functioning.I know that adaptive functioning cannot have been impaired in early development either. In this case, I was misdiagnosed with Asperger’s, but then again maybe my adaptive functioning impairments were presumed to be due to blindness. The DSM-IV-TR expanded text uses other differentiation criteria, like “active but odd” vs. “passive” social behavior. Again, I am passive, as are most women on the autism spectrum.
  • Mild autism means the person has an IQ above 70 (or 85, in some cases). This doesn’t say anything about one’s autism, but about the presence or absence of comorbid intellectual disability. Why would the severity of one disorder be defined solely by the existence of another disorder?
  • Mild autism means the person meets fewer criteria. Relatively speaking, then, again, Asperger’s can be considered to be milder than autistic disorder, because for an Asperger’s diagnosis, you need to meet only three criteria (out of eight), whereas you need six (out of twelve) for an autism diagnosis. I could be considered to have moderate Asperger’s, because I meet five criteria (as I walk myself through the DSM-IV-TR right now, I forgot how many I met during my diagnostic interview). However, most people with an Asperger’s diagnosis will in fact meet some criteria from the “communication” set that isn’t included with their diagnosis, but less obviously than those with an autistic disorder label (I for one have periods when I use a lot of repetitive language, but am generally judged to have normal communication). Also, some people experience more trouble due to one area of impairment (eg. repetitive behaviors) than another, and may therefore meet fewer criteria but still be equally severely impaired. And, of course, I’m not even speaking about those autism symptoms that haven’t made it into the DSM-IV, like sensory processing differences, executive dysfunction, etc. I for one find these particularly impairing.
  • Mild autism means few behavioral problems, like aggression or self-injury. Even though this is often assumed to be a logical determiner of severity, these problems aren’t anywhere in the DSM-IV-TR or DSM-5 as far as I know. I got this one thrown at my by my therapist and social worker. They don’t realize that I’m heavily medicated and that, besides, my aggression/self-injurious behavior is considered a symptom of my borderline personality disorder.
  • Mild autism means the person can live independently, keep a job, etc. This may in fact be the most accurate determiner of functioning, and it has made it into the DSM-IV-TR as one’s axis V GAF (global assessment of functioning) score. The problem with this very raw guess about one’s ability to function in daily life, is that of course someone may function alright in one area and not function at all in another. For example, I am at this point unemployable for reasons related to my autism (of course I am unemployable for reasons related to my lack of education, too, but that is not the point) and cannot live independently, but I can be in a romantic relationship.
  • Mild autism smeans needing little structure: this has made it into DSM-5 as the repetitive behavior severity determiner. I got this thrown at me yesterday by the nurse saying I didn’t need ltos of structure. This may be so, in that I do not attend day activities nine-to-five, but this is mostly because I have such severe sensory and cognitive overload issues that I cannot function in a group for any extended period of time. I also avoid needing support a lot by for example staying in bed all day.

  • Mild auism means being able to hold a conversation. This is in DSM-5 as the social communicative impairments determiner of severity. I can hold an okay one-on-one conversation, but then again, I’m passive, not active-but-odd.

I do realize that I’m not severely autistic by many of these determinants. This, a gain, however, does not mean needing little support. In fact, on a busy ward like mine, it is required that you actively ask for support when yo need it. That is particularly hard for me, so I’m told I a pretty self-reliant. This inability to ask for support has led to a few pretty awkward situations lately. For example, yesterday night, I couldn’t sleep, but when going to the night staff, I was met with: “So what can I do for yu?” Well, I didn’t know, so I went back to my room and was up all night. When, a few hours later, I was feeling very much on edge, I self-harmed to calm myself because I knew that I didn’t know what else to do and I knew the staff wasn’t going to help me anyway. I haven’t told the staff about my self-harm, because I reckon they’ll chalk it up to BPD-related attention-seeking if I do.

What’s in a Name?: Autism Subtyping in DSM-5

Recently, there appeared an article in the Journal of Autism and Developmental Disorders on why autism should be taken apart. I have not read the article yet – going to do so after I’ve had a good night’s sleep -, but I have read Harold Doherty’s comments on it. They follow the usual autism awareness rhetoric: my child is not like autistic advocates and therefore autism must be taken apart. And oh by the way, the DSM-5 is bad for calling the entire spectrum by the same name.

Let’s focus on that last bit. I own a copy of the DSM-5, and in the criteria for autism spectrum disorder, there are specifiers for:

  • With/without accompanying intellectual impairment.

  • With/without accompanying language impairment.

  • Associated with a known medical or genetic condition.

  • Associated with another neurodevelopmental, behavioral or mental disorder.

Furthermore, most people in the autism community know this, but there are three severity levels with coding of severity on each of the two symptom domains: social communicative impairments and repetitive behaviors.

Let’s contrast this with the DM-IV, which people like for its distinciton between Asperger’s Syndrome and autistic disorder. Anyone who has a communicative impairment, which could be just being unable to hold a conversation, and meets the criteria for Asperge’rs, could be labeled with autistic disorder. In fact, many of the autistic advocates Doherty and others disagree with, have an autistic disorder diagnosis. In terms of severity, also, the DSM-IV is pretty rigid in its focus: you only get the GAF scale, which determines a patient’s global level of functioning. I have a GAF score of 40, which means severe impairment in severeal areas of functioning. It is not stated whether this severe impairment is due to my autism or my borderline personality disorder or even due to the many labels I have on axis III (general medical conditions) and IV (psychosocial functioning).

I am not against subtyping of autism. In fact, I completely see how intellectual disability, language impairmetn, associated medical conditons such as epilepsy, etc., make a huge difference in an autistic person’s functioning. What I am completely against is the dichotomous taking apart of autism that Doherty etc. so often advocaate, where you eithr have Asperger’s (ie. social ineptness) or you have low-fuctioning, severe, classic autism. This dichotomy means that people who have severe impairments in self-care skills but, say, an IQ above 70 and no language impairmetns, are denied services on the basis of being merely socially inept. I don’t need to go into the consequences of this.