Tag Archives: Identity

If I’m Not Autistic, What Am I?

My psychologist removed my autism diagnosis, which I’d been first given in 2007, last summer. After a long process of negotiations, she decided to diagnose me with dependent personality disorder, borderline personality disorder traits and depressive disorder NOS. I strongly disagree particularly with the DPD label, but more importantly, I want my autism diagnosis back. I requested an independent second opinion, which I’ll be getting the first appointment for this Thursday. Just this evening, I told a leader of an autism group in the Netherlands that I’d be closing the autism chapter if the second opinion provider agreed i’m not autistic after all. Then I’d definitively consider myself, well, what? I’ve rarely used the word “allistic”, which is someone who isn’t autistic. I feel that all people with neurodevelopmental conditions essentially fall on the same spectrum. Many autistics disagree and would not allow, say, a person with ADHD into their community. Indeed, if I’m not autistic, I’m allistic, period.

There used to be some concept of “cousins” in the autistic community, which included people with other neurological or neurodevelopmental differences, such as ADHD, Tourette Syndrome or hydrocephalus. Maybe I could consider myself a “cousin”, since I was at one point diagnosed with hydrocephalus and that’s a far more hard-wired diagnosis than is autism. So I’d be an allistic cousin to the autistic comunity. The concept of “cousins”, however, is barely accepted anymore.

Besides, it’s not just about community. It’s about identity. If I’m told that after all I’m not autistic, a vital part of my identity is being destroyed. Someone compared it to losing their status as an animal lover. It’s far worse. It’s like being told I’m not blind – there is another reason I’m unable to see, but that’s not called blindness. Besides, there’s no ICD-10 or ICD-11 or where are we these days code for it. This is analogous to what my psychologist has done with respect to my autism: it isn’t there, because there is another reason I have cognitive and sensory and social-communicative difficulties, but there’s no DSM-IV code for that.

It affects services, too. If I lost my status as a blind person, I would no longer be allowed to use my white cane. I would no longer be provided with reading materials in accessible formats. I would no longer have access to services for the blind. If there’s no ICD-whatever code for explaining my lack of sight, there won’t be any other way to gain access to these accommodations or supports. I can imagine this is in part the reality for people with conversion disorder manifesting as blindness, since some service and accessible reading material providers ask for verification of the “physical basis” of one’s blindness.

If I lose my status as an autistic person and there’s no diagnosis to replace it with, I’ll not be able to access services that take into account my cognitive, sensory and social-communicative difficulties. In fact, my psychologist has already voiced her disagreement with me applying for day activities for people with traumatic or acquired brain injury. She says I have “congenital brain injury”. At least, that was her reason for removing my autism diagnosis. Since “congenital brain injury” isn’t acquired or traumatic brain injury, I won’t qualify for services for that. Since in fact “congenital brain injury” does not exist in the diagnostic handbooks, there is no help for it. It’s worse even than conversion blindness, since that can be treated somehow.

Now imagine that I, who clealry has an eye condition causing blindness, were told I had conversion blindness for lack of a better diagnosis. That’s about what it feels like being diagnosed with dependent personality disorder as a clearly neurodivergent person.

It could be worse. I could be told I’m not neurodivergent at all. This would go beyond saying I am an unfortunate case of falling between the cracks with my useless diagnosis of “congenital brain injury”. To use the blindness analogy again, this’d be like being told I am fully sighted, yet only believe I’m blind for attention, because I don’t accept my status as a short person, or whatever nonsense claim people have made as to why I erroneously believe I’m neurodivergent. This is a possible outcome of my second opinion too. After all, though I have hydrocephalus, there is no proof as per a neuropsychological evaluation that this has caused me lasting impairments. My psychologist is of this opinion to an extent and so are my parents and sister, believing I have problems because I think I do.

Back to my autism diagnosis or the lack thereof. Some people say you’re autstic if you’re autistic no matter how many professionals say you are not. They say that, if support tailored to autistics, including being part of the autistic community, works, you must be autistic. With my poor self-image, I’m not so sure this would be the case for me.

Defining Myself

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

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

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

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

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

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

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

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

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

Age Is But a Number?

Age is but a number, we so often hear. There are many, usually older people who say they never grew beyond age twenty-nine (or whatever age they like the most). Some people even say they remain children at heart.

I can relate to this, and yet I can’t. I can relate in the sense that I strongly embrace my inner children and teens and the fewer and fewer selves who are older than me. Right now, only my crafty self identifies as older than my chronological age.

Yet I am also very much aware that certain developmental expectations are tied to certain ages. I was made aware before I was nine-years-old that, by age eighteen, I’d be leaving the house. My father jokes that the family cat should earn his high school diploma if he ever turns nineteen. The cat is only thirteen, but you get the idea. Even cats need to conform to developmental milestones, so people certainly.

Of course, in the privacy of my own room or even with my husband present, I can be childish all I want. I for example bought a Barbie doll when one of my inner children was particularly active. Nothing’s wrong with that. On the other hand, the only reason I can go on forums that are commonly visited by teens, is that I’m female. Had I been male, I would’ve been seen as a pedophile. (For clarity’s sake: I don’t go on forums that have a clear age limit or ever lie about my age, and I have absolutely no intention of exploiting anyone.)

My age is not only significant in highlighting the inappropriateness of my embracing childlike roles, but also in making clear that I’m missing out on adult milestones. I never spent much time in college, let alone graduating it, though I’m hardly technically a yooung adult anymore. I never held a job, even a summer job. I am not pregnant, let alone a mother. I hardly ever lived independently, which even on sites for people with autism is seen as a rite of passage into adulthood.

I have written about many of these issues before. I grieve the loss of my child identity (and an inner child is no excuse). I also grieve having missed out on adult milestones and likely missing out on even more as time goes by. Age is but a number, but you can’t just act whatever age you feel, at least not in public. That’s with good reason, of course, but it is still somewhat hard to deal with sometimes.

mumturnedmom

Masks and Alter Personalities

This week, Ginny Marie’s spin cycle prompt is “masks”. I saw this topic being announced a few weeks ago already, and immediately knew I wanted to participate. Now that I’m sitting in front of the computer, a thousand thoughts spin through my mind.

Throughout my life, masks have played an important role. Not literal masks, but the figurative masks people put on, or are made to put on, to appear like something they are not. In all honesty, I’ve worn and been made to wear so many masks that I don’t know whether at a given moment I was being sincerely me or was wearing a mask.

I have many alter personalities. They’ve come to play less of an important role now that I no longer carry the diagnosis of dissociative identity disorder, as I did from 2010 until 2013, but they’re still there. These alter personalities represent aspects of my life I feel forced to disown, either by some internal or external force. Two of them have always played the most important role.

The first one is Jane. She is a strong, independent young woman. She doesn’t need much help from others. She is intelliigent and she knows it. Her only negative characteristic is that she’s a bit distant and she would rather live alone than for example with my husband. Maybe it’s because she was formed when the least of my priorities was finding friends, let alone a partner. Independence was much more important. I mostly acted like her when in high school, doing overall well. If anything, I asked for help too little.

The other is Carol. She is a young woman too, but pretty severely disabled. She has trouble with self-care, engages in self-injurious behavior, has meltdown after meltdown. She can speak, but barely communicatively so.

There are others, too. Teens, like Elena, the cheerful one, or Brenda, the angry teenager. There are young ones too, like Milou, the curious eight-year-old, and Suzanne, the seven-year-old with too many responsibilities. Some represent hopes for my future, like Esther, who is a mother. Carol and Jane, however, are the most important in shaping my current self-image.

Many people, in today’s rehabilitation-based society, expect me to disown Carol and embrace Jane. She may be a bit schizoid, but she is intelligent and independent and that’s what matters. Many people not involved in my care see her as the authentic me, not realizing she is as much a mask as Carol is, and as much a mask as all the others are.

The thing is, all these parts or masks or alters make up me. I have learned over the years to stop having to put an alter’s name to my every action. That is improvement, but it doesn’t mean the alters weren’t there when I still dissociated significantly, and it doesn’t mean they’re not there now. When I go into a welcoming Mommy community, I’m still Esther. When I craft, I’m Annemiek. When I play with Barbie dolls, I’m Little. Yet I don’t show it openly or even covertly all the time.

I still have a very unstable sense of self. That may be why I wear all these diagnostic labels that I talked about in previous posts – they help me understand myself. So do all the alter parts. I may not be putting them on like a mask to the outside world anymore, which means I’m no logner diagnosable with a dissociative disorder, but I do still inwardly experience them.

The Twisted Twenties

Second Blooming

When the topic for this week’s spin cycle was announced, I was immediately interested. The topic is “aging”. Ginny Marie over at Lemon Drop Pie came up with the topic when she learned about the average age mothers gave birth to their first child. It is 29 here in the Netherlands, so Ginny Marie and her co-host Gretchen were significantly older than that. As I’ve written before, I’d always thought I’d have my first child at 27. This obviously didn’t come true. Now rest assured, I’m not going to write about childlessness again, if for no other reason, then only because my family is going to think I’m pregnant.

Instead, I want to write about the looming idea of aging when you’re relatively young. I’m going to be 28 next month. However, I feel much older at times.

I’ve always had this feeling. When I was nine, I worried about needing to leave the parental house when I’d turn eighteen. This feeling of doom continued to haunt me until I was in my early twenties. In 2008, it was at its worst. I was convinced that I wouldn’t make it to the end of the year. I had my reasons for this, but most were completely outrageous and irrational.

Being in your twenties is interesting. It may be that most people in the online world are in their twenties, as I see no communities specifically for those my age. I’m too old for the teen communities or even the college communities, but I am still so significantly under 30 that I can’t get myself into communities catering even loosely to the over-30.

I remember when I was around fourteen reading an artilce in a youth magazine about college students and their identity crises: they’re too old to be protected by their parents, but too young for buying a house, marriage or children. I am older than all young adults quoted in the article that I remember, but I still feel this way at times, even though I got married at the rather young age of 25.

Now that I’m approaching age 30 (or at least, am close to my late twenties), I can feel the ticking of time again. I don’t have the feeling that I’ll die young anymore, but I do realize that it’s about time I get a life. And there, sadness sets in, as I may never have the life I planned for myself when I was young.

Can Gender Identity and Sexuality Be Fluid?

Two weeks after I was hospitalized, my parents cameto the psychiatric hospital to speak to my doctor. They said that I wanted to be different in all sorts of ways, and one of hteir reasons of thinkign so wast hat I used to identify as lesbian. I wasn’t sure at the time whaht sexual orientation I identified with, and still am not, but it’s a fact that I’m now married in a heterosexual relationship.

Can sexual orientation and gender identity be fluid? I think so. That is not to say that it isn’t static for some, or that it can or should be changed from the outside, but like in my own case. I was in love – or what I thought of as being in love – with some girls first in the eighth or ninth grade, then in eleventh grade fell in love )or again, what I thought to be falling in love) with a boy, now am married to a man. Does this mean I was never a lesbian? Does it mean I am bisexual, bicurious, pansexual, or heterosexual posing as queer for the sake of beign different? Does it really mater? I’m happily married, so isn’t that the thing that counts?

In a society that fully accepts variations of gender identity and sexual orientation, we would be allowed to shift along the spectrum. We wouldn’t even need labels for our identities except in the sense that we needed to identify who we’re attracted to on dating sites. I guess we’ll not get to this point anytime soon, but I don’t think queer people are to blame for apparntly alienating themselves. HOneslty, I feel that if society isn’t fully accepting of the whole spectrum of experience, it’s not all that strange that queer people feel different, because, after all, they are.

Do Labels Matter?

Just a few minutes ago, I found a great post on Our Stroke of Luck about having a child newly diagnosed with autism and still realizign he’s him. I struggled with my comment in a way, because I didn’t want to say that autism doesn’t matter. It’s still a part of who an autistic person is. But it’s not all. As Owen’s mother writes in the post, he’s still adoerable.

I am sometimes told I overemphasize how different I am from other people. I am trying to lessen this habit, because, even though disabilities are a large part of me, they’re not all there is. I am also ssmart, have a cynical sense of humor, and am pretty strong-willed. I am a crafter, a blogger, a wife, an activist and a student. I know I’ve written about this before, but I keep struggling with this identity confusion thing.

One of the commenters on the post said that labels don’t matter, love does. I disagree with the first part of this sentence. Labels are what define us, they’re just not always negative labels or disabilities. All the qualities I listed above, are labels. Of course these labels make up a whole person, but it can be hard to see yourself or others as the whole person without using the labels that make up you or someone else.

I know what the commenter meant. A disability diagnosis doesn’t make the disability real (and no diagnosis doesn’t make it unreal). Especially if you were born with your disability or acquired it early in life, there’s no way of knowing what you would’ve been like without it. A diagnosis may be a relief, knowing that your or your child’s struggles are not due to laziness or all in your imagination. It may be depressing in the sense that this same reality – the diagnosis and accompanying prognosis – may shatter your dreams. It is an art to find the right balance between accepting and challenging your or your disabled child’s prognosis. Labels should matter, but not so much that they become a self-fulfilling prophecy.

People Aren’t Broken

After being told she’d be officially diagnosed as autistic, Autisticook wrote a post titled I’m Not Broken. I commented on this post, but wanted to expand on and generalize this a bit more.

I remember when in DID meetings, there were people who didn’t want to have DID, and people who felt the DID diagnosis somehow validated them. I fell into the latter category and was often told I wanted DID too badly. The people who felt their diagnosis was validating, often said it made them not be crazy. “I’m not broken, I was traumatized,” one person said, incidentally in the meeting in which I was kicked out for allegedly having imaginary DID.

In my journeys as an autistic, I learned a lot of what Autisticook describes: autistic isn’t broken. In my brief travels through the natural multiplicity community, I learned the same of multiplicity. Then I heard dissociators say they aren’t broken but traumatized, almost as if their perps are responsible for every single thing in the dissocitors’ lives that is remotely “broken”, and I cringe.

I don’t care who or what made you the way you are. People aren’t intrinsically broken, and using neurology or abuse history or whatever as a reason for not being broken, only makes other people, who don’t share this same attribute, look broken. Like, are people broken if their behavior can’t be directly linked to trauma or neurology? I’d say they arent’. Their behavior may be unacceptable, but so may the behavior exhibited by autistics or trauma survivors.

I am not saying you can’t use your neurology or experience as part of your identity. I do this all the time. What I am saying is that a diagnosis is at once no excuse for unacceptable behavior, and unacceptable behavior doesn’t make you broken regarldless of your diagnosis or lack thereof.

BPD Criteria and Me

Yesterday, I came across someone going through the BPD criteria and describing how he met them. I thought I would do the same, so here goes. My diagnosis was based on DSM-IV-TR criiteria because the Netherlands has not yet implemented DSM5. You need to meet at least five criteria out of nine. I meet at least six and most likely two more.

  1. Frantic efforts to avoid real or imagined abandonment. Well, I have a huge fear of abandonment, but my attempts at coping with it tend to lead to actually being abandoned. I often can predict when someone is going to abandon me, but am not sure whether this is a self-fulfilling prophecy, good empathy, or magical thinking.
  2. A pattern of unstable and intense interpersonal relationships characterized by alternating between extremes of idealization and devaluation. This is the one criterion I mostly don’t recognize. Oh well, I do on occasion push my husband away by saying I don’t love him anymore. In this sense, I am the stereotypical “I hate you, don’t leave me” type. My husband says his presumption about borderlines is that people fight tooth and nail then five minutes later are cuddling.. I don’t do that.
  3. Identity disturbance: markedly and persistently unstable self-image or sense of self. This is definitely me. As I pointed out in a previous post, I have no sense of self at all beyond the labels I carry, and in fact am just learning to use my own labels rather than those stuck on me. I tend to have my identity depend on how others see me.
  4. Impulsivity in at least two areas that are potentially self-damaging (eg. spending, sex, substance abuse, reckless driving, binge eating). Binge eating an running off into dangerous situations for me (ie. going for walks without watching for traffic). This is not suicidal behavior. Spending when in a hyperactive mood.
  5. Recurrent suicidal behavior, gestures, or threats, or self-mutilating behavior. Well, I self-harm and often make suicidal threats. when talking on the phone with my sister about my new BPD diagnosis, she said that mild self-injury like I do does not really count and that I make suicidal threats for attention. Well, I disagree with the “for attention” bit but really it doesn’t matter.
  6. Affective instability due to a marked reactivity of mood (e.g., intense episodic dysphoria, irritability, or anxiety usually lasting a few hours and only rarely more than a few days). This is so true for me. I have rapidly shifting moods from irritable to anxious to hyper etc. My sister got talking of manic depression, but then moods have to last for a couple of days to weeks. Mine don’t. I return to “normal” (ie. slightly depressed and irritable) or another mood episode within a day or so.
  7. Chronic feelings of emptiness. I’m not really sure about this one as I have good reason to feel empty, ie. no job or extensive day activities. Then again, the feeling of emptiness can come for no reason and go with another perseveration or impulsive action.
  8. Inappropriate, intense anger or difficulty controlling anger (eg. frequent displays of temper, constant anger, recurrent physical fights). I don’t physically fight but I do have recurrent temper outbursts. For me, I’m not too sure whether they’re meltdowns or outbursts, but I do have them in situations other than when overloaded too.
  9. Transient, stress-related paranoid ideation or severe dissociative symptoms. Well, duh. I have both actually. I get terribly paranoid when under stress and obviously have dissociative symptoms, ie. feelings of not being myself, chronic depersonalization and derealization, occasional amnesia.

I have been trying to find DSM5 criteria, but can’t. I know a new model for diagnosising personality disorders has been proposed, which bases the diagnosis on a combination of impairments in personality functioning and personality traits, but this model is used for research purposes only.

Ramblings on Self-Image and Diagnosis

This afternoon, I was discussing y treatment plan with my psychologist. I heard her saying something about diagnosis and treatment being complicated by a combination of autism with axis II symptomatology. “Axis II,” I thought, “that’s personality disorders. Have they finally gotten to diagnose me as BPD?” And yes, they have. And instantly the DID and PTSD diagnoses went out the window. Not only that, but BPD, not Asperger’s, is my “main diagnosis” now.

What does this mean? I anticipated it for a long time. In fact, I’ve always doubted the diagnosis of DID. When initially diagnosed, I was too overwhelmed by some of the consulting psychologist’s questions to answer them with the nuance they required. Like, the psychologist asked whether we are aware of what happens when another alter is out. I said no, but the real truth is that we could not have known, since if we lost time, we would only find evidence later and not know that an alter had been out unless we’d had soome awareness of that alter.

I have a very unstable self-image, which goes with both DID and BPD. In addition, I need concrete qualifiers for myself, which I theorize could be an autistic feature. This gets me to identify myself not with abstract characteristics like creative, intelligent or whatever, but with the labels I’ve been given. I’ve gotten better over the past year or so at identifying myself with neutral labels like crafter and blogger.

At the same time, I still do have characteristics that are more abstract. I am not just an autistic, a crafter and a woman. I am not just a dissociator or a borderline. Yet what I am in terms of these labels, fundamentally impacts how people see my characteristics. Like, borderlines are generally assumed to be manipulative attention-seekers. If I’m seen as manipulative when a vulnerable alter is out, for example, that means my needs won’t be listened to. In contrast if I’m seen as vulnerable when I’m manipulating, I won’t unlearn to manipulate. Furthermore, my poor self-image may not alter the core of my mental problems – whether that be a drive to manipulate or emotional vulnerability or both or soomething else entirely -, but it sure alters the way I perceive this core.