Tag Archives: Brain Injury

First Appointment for My Second Opinion

Like I said on Tuesday, I had my first appointment for the independent second opinion I requested regarding my diagnosis yesterday. I had chosen to be referred to my province’s university hospital, where the psychiatry department has expertise on autism as well as personality disorders. I after all wanted them not to be too prejudiced for or against an autism diagnosis for me. I mean, I have had autism diagnosed previously and think I have this, but there must be a reason my treating psychologist doesn’t agree. The most important reason for this is her believing that, because I developed hydrocephalus as a baby, my diagnosis should be some form of unspecified brain injury. Since this isn’t in the diagnostic handbooks, I’m now left with “just” a personality disorder, a diagnosis I dispute.

I had a two-hour meeting with a clinical neuropsychologist and a medical psychology intern. Because I had somehow seemed to remember the appointment would take only 30 minutes, this was quite a change of game to me. I however handled it well and was in fact glad that I could explain things. I had thought they’d just rely on the questionnaires I’d filled out last week, which couldn’t possibly give them a complete picture.

First, the neuropsych said I’d come to the right place, as this psychiatry dept know brain injury, autism as well as personality disorders. I said I knew and that I’d requested to be referred here myself. She then asked me to explain my impairments. I focused on sensory and organizational skills difficulties, as my social impairments are not too obvious in my current setting. I mean, I’ve heard nurses say I can’t possibly be autistic because I can hold down a normal-sounding conversation with them. I can, but then again conversations like this aren’t meant to be truly reciprocal. I instead gave examples of sensory difficulties and problems with daily activities.

Then we went over my struggles and strengths throughout life. I started by recounting my elementary school experiences. I realized I remembered social isolation from as early as Kindergarten on. I also mentioned I remembered feeling practically burned out by age five, insofar as a five-year-old can have this experience. I forgot to mention that my parents have always said I was a cheerful preschooler at least and didn’t start having serious trouble until I had to learn Braille by age seven, presumably because I didn’t accept my blindness. I did however explain my difficulties in accepting my blindness. I explained that I temporarily accepted my blindness, or at least pretended I did, when I went to regular school at age thirteen, but never truly accepted it.

I mentioned having some friends in first to third grade, mostly older girls who babied me. I did have one friend in later elementary school too, but did experience more social isolation and trouble navigating the more complex friending process from age nine on. At this point, my behavior problems also became worse. I mentioned screaming, self-harm and physical aggression, though I only know I was physically aggressive because my mother reported it to my diagnostician in 2007. I also mentioned being good at academics. The psychologists asked about my interests. I mentioned drawing maps and calendar calculation. She didn’t ask about play, which was one area in which I was okay if behind. I mean, I still played with dolls by age twelve, but that may be considered a strength in the realm of autism, as it shows imagination.

My parents encouraged me to develop age-appropriate intersts when I was about ten. Looking back, I don’t think they knew what my peers were into either. I told the psychologist about the Backstreet Boys poster on my wall, that I only had for the purpose of fitting in. Another example that I only remember just now is my pretending to be an Ajax fan. Ajax is a major Dutch football club from Amsterdam. I am originally from Rotterdam, which has its own major football club whose fans hate Ajax, but I went to school in another city, so all my peers were Ajax fans.

When I was thirteen, I transitioned from special education to a mainstream secondary school. I mentioned feeling extreme stress then, being bullied and isolated. I did mention the four girls I was “friends” with for a few months in my first year at this school, explaining that I was way too open and clingy to them and pushed them away. I also mentioned clinging to my sister’s friends’ big sisters in later elementary school. I mentioned seeing friends in a more materialistic way than most older children see their friends. I mean, when one girl in late elementary school gave her friends candy, I believed I was her friend when she gave me candy too. I even imitated her friends by asking this girl, in the same tone of voice as they did, “Got something to chew on?”

I didn’t go into that much detail about my secondary school struggles. Honestly, I barely remember this time period, even though I kept a diary throughout secondary school. I did mention feeling like I was out of my own body or living in a movie throughout adolescence. I am surprised as I write about and recall my meeting that I barely used technical terms. I consider this a good thing.

I went on to describe my increasing struggles with self-harm and aggression after high school. I described my crisis of 2007. I didn’t go into that much detail regarding my psychiatric hospital years. I did mention some of my current struggles, like with handling unexpected situations. The psychologist asked about my challenging behavior, such as wandering, self-harm and aggression. I said it’s a lot less frequent now that I’m on medication but still happens. The psychologist wants to speak to my psychologist at the institution regarding psychological treatments for these behaviors. I haven’t had any and have never had the impression that my psychologist feels any would be helpful. This got the neuropsychologist to say she may also write some reccommendations for treatment into her report.

At the end, she concluded she does see signs of autism, but wants my parents (likely my father) and husband to fill out some questionnaires too. I will also get a bunch of questionnaires. Since they are in print only, I said I’d need help filling them out. The psychologist offered to have the intern help me, as I would not feel truly free to be honest to my nursing staff or even my husband. I liked that. She also said she wants me to get some neuropsychological testing done to provide further validation for my strengths and weaknesses. I said my psychologist had not felt this would be possible or even necessary. Some tests may not be possible but others are and this psychologist does feel it’d be helpful.

I also got a bunch of questions regarding depressive symptoms. The psychologist at one point pulled out what sounded like the DSM criteria for major depressive disorder. She didn’t finish questioning me on them, as she drifted off a bit.

I had to have bloodwork done to rule out physical causes of psychiatric symptoms. The intern took me to the waiting room, where my sister-in-law was waiting. She came to me, but I didn’t recognize her and the intern had not seen her before, so she assumed my sister-in-law was the nurse for the blood draw. As she lead me out of the psychiatry department, I remembeed to ask who she was and to say I needed to have bloodwork done. We returned and a real nurse came to do the blood draw. I am extremely hard to draw blood from, so the nurse tried three times, then called a colleague. After he drew blood, he asked whether this had been an intake interview. Since that’s what it’s called, I said “Yes”. This meant I had to have my blood pressure (pretty high), temperature, weight and height (I’m still obese) and waist and hip measurements taken. I forgot to say I’m not going for treatment here, which seemed to be the reason the nurse wanted these numbers. I had not grown in abdominal measurements since they were last taken last year, thank goodness.

Overall, I’m pretty happy with the way this appointment has gone. I will get a letter setting a date for an appointment for the questionnaires and tests.

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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.

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.

Five Inspirational Books That I Love

This week, one of Mama’s Losin’ It’s writing prompts is “book review”. Also, a few days ago, the Blog Everyday in May prompt was “five books I love”. I don’t participate in Blog Eveyrday in May, since I only discovered it yesterday, but I love to find writing prompts. Therefore, I thought I’d combine the two and list five books I love. As it turns out, all are inspirational books.

1. Preemie Voices by Saroj Saigal (2014). This book is a collection of letters from former preemies, born between 1977 and 1982, that describe their lives now and give hope to parents of today’s premature babies and children. Many years ago, I believe Bill Silverman wrote a book of stories from former preemies titled Small Victories. I could unfortunately not get my hands on this book and am so glad I got my hands on Preemie Voices. It is so validating to know that I’m not alone on this preemie journey, even though it’s a bit annoying that the target audience is parents of today’s preemies.

2. Miracle Survivors by Tami Boehmer (2014). This is Boehmer’s second book of stories from long-term survivors who were said to have incurable cancer. I didn’t read her other book, but I think I’m going to. In Miracle Survivors Boehmer starts by listing characteristics she’s found long-term survivors of thought-to-be-incurable cancer have in common. Each contributor then tells his or her story and ends it with life lessons they’ve learned through their journey with or their overcoming of cancer. Though some people use alternative medicine and claim to have been cured by it, this is not prominently promoted. Above all, the survivors promote being on top of your own care and advocating for yourself. I feel this is an importnat message even to those who are in the healthcare system for other reasons.

3. Angels at Our Table, 2nd edition by Ann Breen (2012). This is a book of stories from parents of children (and some adults) with Williams Syndrome. People with Williams Syndrome usually have an intellectual disability and may have many health problems, but they also commonly have a very sociable personality and cute facial features. Though many families struggled with getting their children properly diagnosed and treated, particularly back when Ann Breen’s daughter was young in the 1980s, the message in the book is one of appreciation. The importance of support is also highlighted, as Ann Breen founded the Williams Syndrome Association of Ireland. I for one happen to actually like inspirational books about people wiht disabilities, so this one is a good one for me.

4. Real Families, Real Stories by Stephanie Sumulong (2014). This is a book of stories from family members of children (and again some adults) with Down Syndrome. The stories are very short, which is a bit disappointing, because i don’t get to get a deeper understanding of these families’ lives. The intention of the book is to celebrate people with Down Syndrome. For this reason, it is also sad that no adults with Down Syndrome were interviewed. However, the stories do cover many aspects of families’ lives with Down Syndrome, including prenatal diagnosis, adoption, the heart defects that commonly occur in Down Syndrome, and sibling perspectives.

5. Chicken Soup for the Soul: Recovering from Traumatic Brain Injuries by Amy Newmark, Carolyn Roy-Bornstein and Lee Woodruff (2014). I have not yet finished this book, but so far, it seems wonderful. Having myself acquired possible brain damage shortly after birth, I find the stories of brain injury survivors somewhat relatable, though of course I did not have a life prior to brain damage. A few months ago, I read a Dutch book of stories from people who had invisible disabilities due to brain injury and I loved it. Being Chicken Soup for the Soul, the stories of course have been selected for being inspirational, but so far, it looks like many aspects of life with TBI are covered.

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“Preemie Syndrome”

As I said in an earlier post, I was talking with my psychologist on Wednesday, and she mentioned not being sure I’m autistic after all. She said I might suffer from the effects of brain injury. Now my parents say it hasn’t even been proven that I had a brain bleed, but it is proven that I had hydrocephalus, which alone can cause brain damage.

I explained to my psychologist that we’d discussed this problem diagnosing some people on a list for parents of older preemis on which I’m one of a few preemie adults. On this list, we coined the term “preemie syndrome” and there were even speculations about what might cause it. For example, former preemies are known to have on average a much smaller orbitofrontal cortex (OFC) than full-term children. The OFC is a part of the forebrain speculated to pay a role in among other things obsessive-compulsive disorder. Now I have never had an MRI done so have no clue of the size of my OFC, and besides the whole point of “preemie syndrome” was that it needed to be as inclusive as possible to the disabilities experienced by former preemies.

So what is “preemie syndrome”? It is a constellation of often ill-explained difficulties and deficits in a former preemie. These include:


  • Motor deficits, often not diagnosed as cerebral palsy. Developmental coordination disorder, “clumsy child syndrome”, fine and gross motor delays. Hypotonia or hypertonia.

  • Cognitive impairments: learning disabilities or low IQ. Difficulty thinking logically or dealing with abstractions, literal-mindedness, inability to comprehend or follow simple directions, sometimes good rote memory, short-term memory loss. Test scores may be higher than actual functioning. Inconsistent performance.

  • Speech problems./LI>
  • Feeding problems: reflux and/or failure to thrive.

  • Dental problems: missing teeth, need for braces, high palate.

  • Low vision due to either retinopathy of prematurity (ROP) or cortical visual impairment.

  • Autism, Asperger’s Syndrome, Pervasive Developmental Disorder, “autistic traits”.

  • Social dysfunction: few or no friends, may not recognize social cues, oblivious to social space, low self-esteem.

  • Behavioral problems: immaturity, self-regulation problems, poor impulse control, intense need for order and routine, stereotypic (self-stimulatory) or self-injurious behaviours, disorganized behavior, inability to prioritize.

  • Attention deficit (hyperactivity) disorder (ADD/ADHD) or similar traits.

  • Sensory issues: sensory integration dysfunciton, sensitivity to noise, increased startle reaction, “tactile defensiveness”, strong aversion to certain tastes or textures.

  • Depression or bipolar disorder.

  • Anxiety disorders or obsessive-compulsive disorder (OCD). Peculiar phobias.

  • Reactive attachment disorder (RAD) or attachment issues.

  • Precocious puberty.


I didn’t randomly make this list up myself even though I have/had all traits except for speech problems and precocious puberty. I think Helen Harrison was the first to make a list, though I had this one on my website when it was still online.

Of course, if “preemie syndrome” were to become a recognized condition, it would still be very vague. It would require children to get an extensive evaluation to determine their actual weaknesses and strengths. The same, however, goes for diagnoses like brain injury that aren’t particularly helpful except in justifying the need for support.

I still feel that children and adults who struggle in life need to know their strengths and weaknesses and what might help them reach their potential. They may learn this from people who had similar experiences, be it premature birth or brain injury or whatever. They may also learn from people with similar strengths or weaknesses, such as in my case people with social communicative difficulties or “autistic traits”. With a diffuse concept like “preemie syndrome”, people need both. I do feel that preemies could also benefit from the sense of community in connecting with other former preemies. Unfortunately, as I’ve said before, not much support is out there for adult preemies.

I’m a Complex Case

One of Mama’s Losin’ It’s prompts for this week is the phrase “Hi, my name is ___ and I’m a ____”. This phrase made me think immediately of what makes me different from other people. That in turn made me think of a discussion I had with my psychologist yesterday. She was talking about my diagnosis and, before she went into detail, started out by saying I’m a complex case.

I have been processing this discussion, since it stirred up a lot of emotion and contorversy. Let me explain. She isn’t so sure I’m autistic after all. For now, she’s not changing my diagnosis and is continuing with the referral to the Leo Kanner House, the Dutch top specialty center for autism. She however tried to prepare me for them saying that they don’t see me as autistic after all. And for the first time that my diagnosis is being questioned, I can actually agree.

Before this, questioning my autism diagnosis meant saying that everything is normal for a blind person, for an intellectually capable person, you name it. In other words, it was saying that I don’t have that many real problems. It reminded me of my parents’ visit with my doctor on the locked ward two weeks into my hospitalization, in which they more or less said that I was just loooking to be different for attention.

My old psychologist had gone along with this idea to an extent. My new psychologist didn’t. She said that I might not be autistic, but I’m certainly having significant problems in many areas. She has a background in neuropsychology and in fact articulated what I’ve been thinking for a while now: that my problems signal brain injury. I objected that, though I had a brain bleed shortly after birth, brain injury is usually prefixed with “acquired”, meaning that you had a life before your injury. She said the diagnosis is no longer that strict. Unfortunately, a good neuropsychological evaluation is hard because of my blindness and high intelligence, so it’s unlikely we’ll ever find “proof” for all my difficulties.

I’m not really looking to collect labels, although that is what I end up coming across as when I find support for my every (provisional or self-identified) diagnosis. Rather, I am looking to connect to people who have similar problems to me and to find out what helps them. Being a complex case isn’t easy in this respect.

Mama’s Losin’ It

Finding Answers in Disability Limbo

A few months ago, I wrote a post about my need to belong somewhere within the disability community and my possibly intruding upon communities I don’t belong to. One such community is that for brain injury patients. As far as I was concerned, “brain injury” was always followed by “sustained after birth” or preceded by “traumatic” or “acquired”. Yet brain injury can occur at birth too. Only then it’s not called brain injury, right?

Since my autism diagnosis is being questioned again, I’m feeling an increased need to figure out what exactly is wrong with me. In part, this entails putting a name to what I have. Are my motor deficits diagnosable as dyspraxia, mild cerebral palsy, or are they not diagnosable at all? Am I autistic or not? Then again, putting a name to my disabilities is but one of my quests. As I’ve experienced, most communities are open to those with an uncertain diagnosis, so it’s not that I need to have a diagnosis to fit in with a support group.

Back when I was diagnosed with autism, I didn’t want a specific ASD diagnosis. The psychologist, who ultimately gave me an Asperger’s diagnosis anyway, said he wanted to do an assessment of my strengths and weaknesses. I don’t know whether a quick DSM-IV interview amounts to that, but to me, a lot of questions remain unanswered.

It could be my slight neuropsychology obsession, but I want to know why I have issues I do have. I want to understand, in a way, why I can’t function at the level I’m supposed to given my intelligence and verbal abilities. Is it normal to be unable to load the dishwasher but able to write a lengthy blog post? I don’t think a diagnosis, whether it’s autism or brain injury, will answer this question per se, but what will? It is most likely that I have quite bad executive dysfunction, but can this at all be validated? Should it?

It isn’t purely that I’m overanalytical and want to understand my every bit of brain function. It’s more that I’m struggling terribly with being seen as more “high-functioning” than I am in daily life. Not that I want to reinforce the stereotypes surrounding the Asperger’s diagnosis, but my mere existence won’t defeat them either, and I’m sick and tired of having to prove myself.

“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.