Tag Archives: Hydrocephalus

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.

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.


Scarred. It can mean so many things. We can have scars on our bodies and on our souls. Sometimes, the scars on our bodies reflect the scars on our souls. Such is the case with self-harm scars.

I started self-harmign when I was very young. I don’t even remember when I started, but my maternal grandma asked when I was about ten wheter I still banged my head at night. I didn’t, but apparently I’d done this for a long time when I was younger. This is seen as a typically autistic way of self-harming.

When I was older, I started biting myself. My sister and I would sometimes bite each other when in a fihgt – usually I’d bite her more than she’d bite me. I also remember using hand-biting sometimes as a way to manipulate. Hand-biting is typically autistic too, although using it to manipulate is not. This could be related to my pathological demand avoidance traits.

I started cutting when I was sixteen. I vividly remember the first incident. It never got severe – most likely because I don’t have the tools to make severe cuts -, so my scars are relatively small. My biggest self-harm scar is on my leg from an incident last year.

The first time I was confronted with my self-harm scars, was when a staff member at the independence trainign home I lived in at the time, asked me about a slight scar on my hand. I didn’t want to talk about it, fearing that if I disclosed my self-harm, I’d be kicked out of the home.

Self-harm had multiple functions for me. The manipulative function is possibly still there subconsciously, but I also use self-harm to cope with strong emotions that are common in people with borderline personality disorder. Self-harm by the way wasn’t the main reason I was diagnosed with BPD.

As I said, self-harm has many causes. It can be used to express pain, as is often the case for me, but many people also hide their self-harm. If a person does it “for attention”, as it’s commonly called when someone self-harms to express emotions, that doesn’t mean they’re fake. Their (and my!) pain is real, only they have probably learned that the only way to express it is through self-injury. Ignoring people or suspending them from help, as happens in some therapy programs, is only going to be counterproductive and especially harmful if the person hasn’t learned more effective ways of expressing their pain. They need validation especially badly, because the very reason they started self-harming “for attention” is the lack of attention they and their pain got in the past.

Even those who self-harm “for attention” may feel self-conscious about their scars. I am fortunate not to have any too obvious self-harm scars, but I do know what it is like to be questioned about your scarred body. I, after all, have a scar on my belly at one end of the shunt I have because I had hydrocephalus as an infant. Children sometimes said I had a second belly button. When I was at one point worried that my shunt had malfunctioned, my parents also offhandly asked whether I could get the scar beautified if I was going to need to see someone about my shunt anyway. My husband, fortunately, has never made a problem out of my scar. I don’t even think he’s ever commented on it except when I asked him about it.

I am not particularly proud of my scarred self, but I don’t feel bad about it either. In November, I took part in a self-harm event which was being filmed for a documentary series. I don’t have time to go to the preview and most likely won’t watch the series as it airs either, so I won’t know whether I’m in it. If I am, I don’t mind. I don’t show off my scars, but I’m open to educate people about them and their cause.

Mama’s Losin’ It

Mami 2 Five


“Münchausen by Modem”?

i’ve been thinking of a few issues lately, and I want a way to write them out. Particularly, I’ve been thinking about various topics surrndoung my various diagnoses. I’ve only got a few diagnoses – not nearly as many as my Facebook group memberships would suggest -, but I’ve had many off-the-record labels.

Firstly, I have a diagnosis of Asperger’s or autism spectrum disorder. My parents say the diagnostician just gave me thsi label in order to get me services. My former therapist in the old city institution doubted my diagnosis too, thinking my theory of mind is too good for ASD. Now that whole theory-of-mind thing is controversial, but well. This therapist wondered whether a more correct diagnosis would be acquired brain injury, because I had a brain bleed as a newborn which resulted in hydrocephalus. I used this off-the-record label to gain access to some groups for brain injury and am finding them very supportive. (Yes, I did explain my situation in each of the groups and made sure I wasn’t seen as an intruder.) I’ve asked people in the autism groups for their opinion on the brain injury/autsim link, and 90% replied that autism is purely genetic. Kind fo shortsighted in my opinion.

I’ve also been thinking about my mild but slightly worsening motor deficits. I always self-identified as dyspraxic but have recently gotten to wonder what my diagnosis was as a child. I saw a physiatrist (physical disabilities doctor) until around age eight and have many of the syptooms and complications of mild cerebral palsy, including a significant left/right disparity, the need for a cast on my left foot at age five and scoliosis. These issues do not seem to happen to dyspraxics.

In a way, diagnosis shouldn’t matter. I know this. I worry sometimes that I’m only seeking for diagnoses so that I can collect an impressive list of labels. I remember about ten years ago reading something about “Münchausen by Modem”, ie. the tendency of some people to join Internet groups for diseases they don’t have. Am I a classic case of this? I’m not sure, but some people think so. At least, the people in the Dutch DID organization thought so. I guess it’s about time I work on developing a disorder-free sense of self.