Tag Archives: Psychologist

Attachment Disorder vs. Autism: An Overview and My Personal Experience

I am currently reading the book A Guide to Mental Health Issues in Girls and Young Women on the Autism Spectrum by Judy Eaton. I’m only halfway through the second chapter and it’s so incredibly validating. The book talks about misdiagnosis and co-occurring diagnosis of many psychiatric conditions in autistic girls and young women. I can relate to so much of it.

One concept that I found resonated particularly with me was “secondary misdiagnosis”. This refers to a situation where, while a woman was diagnosed as autistic initially, somewhere along the way, her diagnostic records “disappear” and she is rediagnosed as something else. Yes, that’s me! The book has a UK-based focus and I have been told quite often that, in the NHS, your records automatically move where you go. This is not the case here in the Netherlands: you have to transfer them yourself. Apparently though, in the UK, records can disappear too.

In the second chapter, the author discusses misdiagnosis of autistic girls as having an attachment disorder, disruptive behavior disorder or (emerging) personality disorder. Today, I will talk about attachment disorders.

In August of 2016, I demanded an independent second opinion on my autism diagnosis, which my psychologst had removed, for the first time. My psychologist told me she’d set things in motion, but would have to consult with the brain injury unit’s psychiatrist first. After all, my having sustained a brain injury shortly after birth was her primary reason for removing my autism diagnosis. As she returned, the weirdest diagnostic process I’ve ever seen, emerged: she started negotiating diagnoses with me. She said she was willing to diagnose brain injury-related personality change instead of the personality disorder she’d initially diagnosed me with, generalized anxiety disorder and an attachment disorder. I took time to think and eventualy ignored the attahment disorder thing, while reluctantly agreeing to the rest. We still used DSM-IV, after all, where you have to have endured “pathogenic care” to be diagnosed with attachment disorder.

In DSM-5 and the newest edition of the ICD, which was published in 2016, your early childhood still has to have been less than ideal, but the criteria leave room for milder forms of less than optimal care, such as your parents not having been very nurturing. I guess in my case, even with perfect parents (which I don’t have), my premature birth and three months in the hospital would suffice for the current “inadequate or inconsistent care” criterion for reactive attachment disorder.

However, the criteria for RAD say that the child cannot be diagnosed with it if they have an autism spectrum disorder. I understand this doesn’t mean autistic children and adults do not have attachment issues, since I for one do. However, when someone is diagnosable with autism, they cannot be diagnosed with RAD too. In other words, my psychologist ought to have ruled out autism – which she did a pretty poor job of doing – before trying to label me with RAD.

There are several features of attachment disorder that overlap with autism and particularly with pathological demand avoidance. For example, children with attacchment disorder as well as those with PDA can be superficially charming (in order to get what they want), indiscriminately affectionate with unfamiliar adults and inaffectionate with primary caregivers. Both are often defiant or manipulative. They also both can be controlling or bossy. Children with RAD are however more likely to be cruel to animals or other people or destructive towards property. They often show a preoccupation with such things as fire, blood, death or gore. Autistic children as well as those with RAD may avoid eye contact, but RAD children do make eye contact particularly when lying.

Judy Eaton outlines several distinguishing features between autism and attachment disorder. In the ICD-10, the following are mentioned:


  • Children who have a reactive attachment disorder will have the underlying ability to react and respond socially.

  • When abnormal social reciprocity is noted in children with reactive attachment disorder, it will tend to improve significantly when the child is placed in a more nurturing environment.

  • Children with reactive attachment disorder do not display the types of unusual communication seen in children with autism.

  • Children with reactive attachment disorder do not have the unusual cognitive profile often observed in children with autism.

  • Children with reactive attachment disorder do not display the types of restricted interests or repetitive behaviours seen in children with autism.

I definitely see how I have attachment issues. I am usually more open to strangers than to my own parents. Particularly as a teen, I’d also direct most of my aggression towards my mother. I could also be quite defiant. I however also definitely have communication oddities, repetitive behaviors and restricted interests and an unusual cognitive profile. I never “recovered”, though that could be blamed on the fact that I lived with my apparently inadequate parents till I was nineteen. Or it could be that I’m autistic.

I’m Officially Home!: The Road to My Discharge from the Mental Institution

It’s official: I am home. Yesterday was my formal discharge date from the institution. It would’ve been May 1, but got delayed one week because I needed mroe time to make arrangements for my after care. Today, I’ll share my journey to getting the care I need and living in the house I want to live in with the man I want to live with.

Like I said, my original discharge date was May 1. However, a week before that, nothing had been arranged in the way of after care yet. I’d have my first appointment with a psychiatrist from the community treatment team that Friday, April 28. That was all my psychologist said she was required to do in terms of making sure I am in care once discharged. Apparently, she and the social worker had deliberately handed me the responsibility of making sure I’d have day activities and home support, only without telling me I had been handed that responsibility. I didn’t find out about this till April 26, when I had my “exit meeting”, as my psychologist called it. Call me a cynic, but I immediately thought of the Swiss end-of-life clinic by the name of Exit.

After my “etit meeting”, I was very much in distress. I called the patient advocacy person, but she couldn’t do anything for me, as I’d be in the community team’s hands. I called my husband, who was on the road. Desperate, I called my mother-in-law. She asked for my psychologist’s number and somehow convinced her to give me that extra week. It was suggested to me that all it’d take to make sure I’d have day activities was a phone call to the day activity place manager, who was on vacation during the last week of April and would be back May 2. It wasn’t exactly that simple, but in the end it was close to that simple indeed.

On April 28, I had my intake interview with the community treatment team psychiatrist and nurse practitioner. They were much more supportive than anyone in the institution had ever appeared to be upon first meeting them. I suspect this psychiatrist has never worked for a long-term care unit, as she was surprised I didn’t get any therapy there other than day activities. “But it’s a psychiatric hospital,” she said. There she nailed the reason I’ve called it an institution for years: there is very little in the way of actual psychiatric treatment. In fact, a student nurse at one point referred to clozapine, the last-resort antipsychotic the majority of the patients on my unit take, as palliative care. I know for some people it’s a miracle drug, but for many on my unit, all it did was keep them just about stable enough that they could handle an unlocked door.

Like I said, my meeting with the community psychiatrist and nurse practitioner went well. We discussed my syptoms and needs. They would be contacting the home support team, which is with the mental health agency, on my behalf. If no day activities had been arranged by May 12, when I’d have my next appointment, they would also work their arses off to get me day activities.

Last Thursday, May 4, I had appointments at two day activity places. One is for traumatic or acquired brain injury survivors, while the other is for people with an intellectual disability. I had my doubts regarding the first one, which I’d visited in August of last year. This was only confirmed when I went back for an intake interview. It was all very formal. Though this could’ve been because I had already visited the place, it made me feel a little unwelcome. When I disclosed I was also going to look at the other place, the staff at the first place said this might be more suitable indeed. I’d still be welcome at the brain injury place. However, I felt there was too little I could do independently enough there.

I had a taxi drive me to the other day activity place. When I opened the door, some clients welcomed me. They found a staff member, who seated me in a spare room and poured me a cup of coffee while I was waiting for the head staffer to come see me. I talked to him and to one of the staff at the group I’d be placed in. The “orange group” is a group of relatively capable intellectually disabled people who do simple manual labor tasks like packaging, sorting etc. Fortunately, there is no pressure to be quick or do it perfectly. I was a little worried the tasks would be incredibly boring and too difficult at the same time, but I realized it’d either be this or no day activities. Besides, the staff and other clients were very enthusaistic and welcoming. It looked like I might actually have day activities right after my discharge.

Yesterday, however, I had a meeting with the social consultant in charge of my case. The day activity place had already made all arrangements so that I could start “working” there and in fact, yesterday morning I was awoken by the taxi driver ready to drive me there. I had clrearly told the day activity staff that I’d first meet with the social consultant and start “working” on Tuesday, not Monday. For a bit, as I met with the social consultant, it seemed as though it’d all been one big mistake and I wouldn’t be able to start day activities today. However, late in the evening, I received an E-mail from her saying she had pre-approved me for day activities and I could in fact start “working” today.

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.

When Intense Emotions Take Over My Mind

Okay, this year’s #AtoZChallenge didn’t work out. I knew it would be tough writing about autism and related disorders when myself undergoing re-assessment for autism. It didn’t help that, from the E-mail I received on the day I posted my theme reveal, it became clear that I will not have an answer before the end of April. That wasn’t the reason I haven’t written at all since April 1 though. The real reason was my mental health.

Like I mentioned, I have been rather anxious and depressed lately. It however got extreme over the past two weeks. This likely isn’t a worsening of my depression as much as it is emotional dysregulation. That doesn’t make it less real though.

About two weeks ago, I started being more irritable and having more dark, death-related and suicidal thoughts than I had before. I had had almost-daily dark thoughts for a few months, but now they became more than daily. I also started making more concrete plans for a final step. Before then, there had been bizarre images in my head of how I’d die by crucifying myself over the staircase at home and such. These had appeared a bit laughable even to my twisted mind. Now, I started making plans and the before then bizarre-sounding thoughts didn’t seem that ridiculous anymore.

I wandered out of the house at home last week Saturday. Thankfully, my husband came back from where he’d been within aobut fifteen minutes and I was fine. Then on Sunday I had a very bad argument with my named nurse that ended in me melting down.

On Monday, I decided I’d stop taking my medication. I didn’t take my morning meds other than birth conrol and vitamin D (because I wanted to take birth control and couldn’t tell the two apart) on Tuesday. I spiraled out of control that same afternoon. This, for your information, can’t have been from withdrawal yet.

The reason I quit taking my medication was that I’d been having these dark thoughts for a while already and yet I felt I was too drugged up to express them. I don’t mean that I wanted to tell the world, like I’m doing now, but I wanted to be able to cry. And cry I did. I also felt like maybe, if I stopped taking my meds, I’d feel some kind of motivation again. I take a high dose of an antipsychotic, which admittedly the psychiatrist says can’t cause flat affect. I also take an antidepressant, but I’d forgotten why I’d been prescribed it (in 2010!) and it had never been reviewed.

Admittedly, there was also a part in me that wanted to signal to my staff that I wasn’t coping. That didn’t really work. My psychologist said that, if I wanted to be taken seriously about my mood, I needed to take my meds. Not that she’s ever taken me seriously about my mood, unless writing depression NOS into my diagnosis counts, which I don’t feel it does. She also told me that I sabotage the independent assessment if I don’t take my meds. I don’t like to admit it but that was one reason I started taking them again on Saturday. I hate to admit I give in to authoritarian manipulation, but I do.

on Wednesday, I started experiencing what I believe are brain zaps – a kind of weird dizzy spell caused by antidepressant withdrawal. I at first thought they were a side effect of a failed attempt at an overdose. They weren’t. By Friday, they occurred about every minute. I was then ready to start my antidepressant again, but wasn’t sure I could safely go back on it after five days. The nurses had to ask the on-duty doctor or some kind of head nurse or whoever and I didn’t get an answer till Saturday afternoon. Now I feel so stupid for havng bothered the nurses with this question on a week-end. I am glad for no more brain zaps though. I did also start back on the anitpsychotic. Not because I want to be on it, but because it seems I need to.

Since late Thursday evening, I’ve felt relatively well. I still experience anxiety and depression, but my emotions aren’t as out-of-control as they were before. Some things that helped were one nurse taking me on walks and allowing me to use her boxing equipment to blow off some steam. It sucks that I can’t do this at home.

Psychological Evaluation

Last week, I would’ve had my ten year Aspieversary/autiversary or the anniversary of my autism diagnosis. I did realize this and even started writing a blog post about it, but it didn’t feel right to celebrate an anniversary of something that no longer is. After all, I’m no longer diagnosed as autistic. I was also quite shocked when it dawned upon me that I’d been institutionalized for almost the entirety of these ten years. I then started thinking about the ten years before that and how much longer they seemed to have taken. Time flies when you’re getting old(er).

I then started writing a post on the psychological evaluation that I had the day before my would-be-Aspieversary. That was hard too – both the evaluation and writing about it. For the first time that I had a psycholoigical assessment, the personality testing was in fact the easiest – or least difficult – part. I just can’t get past the fact that I did rather poorly on some of the neuropsychological tests and didn’t seem to score as great on the intelligence test.

The neuropsych testing consisted of a couple of memory tests. Most went okay, but with one, I kept losing focus. Then there was a test for semantics, the way words and their meanings are formed and articulated. I had to name as may words starting with a given letter or in a given category (animals, occupations) in one minute as possible. In the animals category, I started blurting out donkey, squirrel and Brazilian wandering spider, which are three words I use repetitively, and then I got stuck. I don’t know what the average score is of course, but some of my staff tried this one and did much better than I did. Of course, they weren’t in an actual test setting.

Then I got what I think is the verbal part of the Wechsler Adult Intelligence Scale. Older versions of this intelligence test consist of a verbal and a non-verbal (performance) part, but the performance part isn’t possible for me because I’m blind. The current version does not provide a verbal or performance IQ score, but it still consists of verbal and non-verbal tasks. I did okay and still seemed to have the same strengths (similarities, arithmetic) and weaknesses (compreheension) as when I last had an intelligence test twelve years ago. I don’t think I scored as mind-blowingly high as my parents would want me to though. When I told my mother so, she said I just don’t want to know that I’m gifted. I don’t know whether she meant that I didn’t try my best or that I underestimated my actual performance.

I also got some tests that seem to be specific to autism. One of them was a kind of weird test that seemed to measure theory of mind. I heard these little stories and then had to say whether a character had said something inappropriate. Then there were follow-up questions abou thow each character would feel, whether they could know that what they said was inappropriate, etc. I got rather frustrated with this test.

Some of the questionnaires also seemed to be relevant to my possible autism. One was some kind of systemizing/empathizing test. I once took a similar (or the same) test online and scored below-average on both scales. I mean, I am interested in systemizing, but I can’t actually do it right in daily life. For example, I can’t balance a checkbook, but I do take an interest in random strings of information, such as share prices (yes, I did at one point perseverate on that). There was also this test that asked about the ability to read one’s own feelings. This was a rather weird one to me, but that may be because I barely understand how anyone would be able to tell the difference between for example feelign excited and feeling enthusiastic.

Lastly, I got a coping sytles questionnaire and several personality tests. I scored high on avoidance twelve years ago when I got the same coping styles questionnaire and I think that has only gotten worse. After all, all I’ve learned in the mental hospital is to distract or take a tranquilizer. This is the worst coping style according to my college psychology professor. I did okay on the personality tests. I mean, it’s likely I have at least some personality disorder traits, but that’d show in my behavior too anyway.

A week has gone by since the psychological evaluation. My husband had to fill out another questionnaire about me again over the week-end. It was some kind of executive functioning questionnaire and I felt rather awkward at how many boxes my husband ticked. I also got a call from the student doing the evaluation on Monday with one more questionnaire. It seemed to be the other half of the systemizing/empathizing thing. I got to do that over the phone. The student also asked for my E-mail address, so that the psychologist could contact me regarding some questions and concerns I had written down and taken to the assessment.

I have mixed feelings about the possible outcomes of the assessment. I mean, I don’t even know whether I want to be autistic after all. Of course, you’d think, most people wouldn’t choose to be autistic over neurotypical. That’s not what’s at stake here though, since I won’t change neurotype if the psychologist diagnoses me one way or the other. I still think I need the validation that my impairments are real. Realizing these impairments makes me feel a little inferior to the people I love, and in that sense, it’d be great if I made them all up. Of course, that may be internalized ableism.

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.

Spectrum Sunday
Keep Calm and Carry On Linking Sunday

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.

Thoughts on Self-Diagnosis by #ActuallyAutistic People #SelfDXIsValid

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

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

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

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

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

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

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

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

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

Dear Psychologist,

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

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

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

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

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

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

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

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

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

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

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

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

Hannah Spannah

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.