Tag Archives: Diagnosis

My Experience with Professional Support for Autism #Write31Days

Yesterday’s post in #Write31Days was somewhat inspired by the day 3 question on the 30 Days of Autism Acceptance. The day 4 question asks about family and support. I may have to split this topic into several posts, as it is about both family and professional support. Today, I will talk about professional support.

I have been in the care system for years. As a child, I was in special education. As a teen, I didn’t get much in the way of professional support, but I sought it back out right after high school by going to a rehabilitation center for the blind. I was still undiagnosed at this point and I don’t think the staff had an idea that I could be autistic.

When I moved to an independence training home after the rehabilitaton program, the staff got to know me better and got the idea that I may “suffer from” autism. That was how the coordinator called it when she wrote my request for services for once I’d be living independently. I hated that word, “suffer”, but I’ll get to that at some later point.

Initially, the reason my staff wanted me to be assessed for autism was to confirm they were on the right track with their support approach. Obviously they weren’t, as they kept switching approaches and expecting little from me one day, then deciding all my challenging behaivor was attention-seeking and leaving me pretty much to my own rsources the next.

I was diagnosed with autism in March of 2007 and started meeting with a community psychiatric nurse (CPN) in training in April. Her supervisor was a bit of a weirdo, barely having read my records and making his own assumptions about what was going on with me. He was the first to mention impulse control disorder, which I got to be diagnosed with along with autism a year later.

The CPN-in-training herself was great. She gave me lots of coping tools, even though I didn’t fully understand the necessity at first. Unfortunately, as I was moving cities to go to univeristy, I had to stop seeing her three months later.

After being hospitalized, my interactions with nurses and treatment providers were quite varied. I had favorite and not-so-favorite nurses on each unit I stayed on. Particularly, my named nurse on the resocialization unit was great. So was the head nurse at that unit, who acted as a step-in named nurse to me too.

What I found the most helpful in a nurse, was if they took the time to really look at my needs rather than at protocols. That was clearly what I missed most at the last unit I stayed on. “Borderlines need to take responsibility,” a nurse – who later became one of my favoirte nurses at that unit – told me when I requested reminders to do my personal care tasks. I know that it wasn’t just that most staff didn’t believe I’m autistic, since they treated another patient with a more established autism diagnosis in a similarly dismissive way.

Now that I’m home, I think most of my staff do a good job of balancing protocols, which of course they have to adhere to, with meeting my needs. For example, my current CPN just reassured me this afternoon that she validates my need to be in a sensory group at day activities. She didn’t even say it’s not in line with my intelligence level.

My home support and day activities staff are great. My husband says it’s a regional thing. It isn’t, because the other day activity place I checked out and the mental health agency’s home support team, both of which are in the same city where I get my day activites, weren’t as accommodating at all.

Psychiatric Diagnoses I’ve Been Given

I just checked out the “30 days of mental illness awareness” challenge and was inspired to write a timeline of my mental health. Then I realized I already wrote it in 2015. Another question in the 30-day challenge though is what you’re currently diagnosed with. Seriously, I don’t know what exactly my current diagnosis is. I know what the university hospital psychologist diagnosed me with, but I am not sure the psychiatrist at my current community treatment team agrees.

I’ve had a lot of diagnoses in the past. I’ve had even more suggested diagnoses that never made it into my file. Today, I will write a list of the diagnoses I’ve had. I will comment on them too.

1. Autism spectrum disorder. I was first diagnosed with this twice in 2007, then again in 2010. I lost my diagnosis in 2016 and was rediagnosed in 2017. This is the only diagnosis I’m pretty sure of that I agree with 100%. It’s the only diagnosis that I’ve been given through a proper evaluation (several, in fact).

2. Adjustment disorder. This was my diagnosis upon admission to the mental hospital in 2007. I didn’t meet the criteria for depression or any other serious mental health condition but needed care anyway. I was at the time fine with that diagnosis and think the crisis team psychiatrist who made it, did a pretty good job of assessing me.

3. Impulse control disorder NOS. I was never told why I got this diagnosis. I just found it on my treatment plan in May 2008. Probably, it was a replacement for the adjustment disorder, which you can only have for six months once the stressor that caused it goes away. I never agreed with this diagnosis and didn’t really take it all that seriously.

4. Dissociative identity disorder. This was diagnosed in November of 2010 and was probably the most controversial diagnosis I’ve ever had. I wasn’t properly assessed for it and my psychologist at the time took what I told her almost at face value. I never believed deep down that I met the full criteria for this. I mean, yes I do have alters and I do have pretty bad dissociative symptoms sometimes, but amnesia is the exception. I find this terribly hard to admit but I do have to acknowledge this diagnosis was in part based on (self-)suggestion. I do believe, like I said, that I have some dissociative symptoms.

5. Post-traumatic stress disorder. I got this diagnosis together with the DID. I don’t really know why. I mean, yes, I did (and still do) have some symptoms, but I’m not sure I have nough and I never reported more than I actually had. I did get some assessment for this. I do currently believe I definitely do have some PTSD symptoms, particularly complex PTSD symptoms. Then again, there is a lot of overlap with borderline personality disorder traits.

6. Borderline personality disorder. This was diagnosed in 2013 and replaced DID and PTSD. It was later “downgraded” to BPD traits. I do agree I have BPD traits, but I am more the quiet borderline type.

7. Dependent personality disorder. I was given this diagnosis in 2016. Never quite agreed with it, except in the sense that I could be led to believe I had every disorder that was ever suggested to me.

8. Depression. This was diagnosed in 2017 by the university hospital psychologist. I had previously been diagnosed with depressive disorder NOS, but that, according to my psychologist, was only because a diagnosis on axis I (anything other than a personality disorder) is required for treatment. I admit I was pretty badly depressed in the months that I had my assessment at the university hospital, but am not sure it was bad enough for a diagnosis. I mean, I didn’t meet the criteria in 2007, so how could I meet them in 2017? I’m assuming my current psychiatrist removed that diagnosis.

Just One Thing

Last week, I started a journal-style blog to explore my inner world. As usual, I didn’t write in it much at all, so I’m resorting back to this blog. The reason I wanted another blog is because of the derogatory comments I’ve gotten here regarding my dissociation. No, I don’t have a diagnosis of dissociative identity disorder anymore and no, I don’t claim to be DID. I do however have insiders, parts, alters or however you’d like to call them. I don’t care what people think of this, or at least, I try not to care. To reclaim myself and my experience, here I’m sharing a post I wrote last week.

Manyofus1980 from Therapy Bits posed an interesting question: if the world could understand just one thing about your mental health diagnosis, what would it be? In the post title, the question is about your “mental illness” rather than your “diagosis”. This is important to my answer, as my short answer is: my diagnosis does not dictate my experience.

I have had countless diagnoses over the years, some of which I agreed with and some of which I disputed. I don’t even know what my current diagnosis is according to my community treatment team. According to the university hospital where I got a second opinion last spring, it’s autism spectrum disorder, recurrent moderate depression and borderline personality disorder traits. Of this, I doubt the depression, because my default mood is low. Then again, I do seem to remember feeling much lower than low in the months that I had my assessment at this hospital. The thing is, I can’t usually connect my feelings from the past to the present if they’re very different.

We didn’t really go into my trauma experience, as my assessment was primarily focused on autism. However, the university hospital psychologist did recommend I get EMDR treatment for the negative experiences I had in the process of moving towards independence. I have not had a trauma-based diagnosis since 2013 and that’s fine by me. I don’t need a diagnosis to justify my experience.

I am who I am. We are who we are. We don’t fit in a diagnostic box, because, well, we’re we.

Sometimes, we feel upset that we don’t get recognition from our treatment team (as far as we know) for our traumatic and post-traumatic experiences. I had a lot of difficulty answering my psychiatrist’s questions about this during my intake interview. I mean, most of the trauma we endured, didn’t leave visible wounds. I know that dissociation can be caused by attachment issues, sometimes even too mild to create PTSD. However, there is still a common belief that only prolonged sexual or ritual abuse can create alter parts. I try not to care. We are we are we, so deal with it.

My Autism Diagnosis Story

The fact that I was rediagnosed autisitc, still feels unreal. As I read the report this evening, self-doubt kicked in. The psychologist who diagnosed me, didn’t feel a full developmental interview with my parents was needed, as I had had that done already in 2007 and there were enough reasons to diagnose autism based on the questionnaires my parents filled out. The report from the 2007 diagnostic assessment is gone though, which is one of the reasons for my soon-to-be former psychologist to have removed this diagnosis. I wonder whether my psychiatrist at the community treatment team will acknowledge this diagnosis. I hope she will.

I’m also not sure whether or how to break the news to the Dutch autistic community. As I mentioned on Monday, I was kicked off one autism forum for good, but I am still in others where I’m faced with suspicion. The international community is a lot more accepting.

In honor of my rediagnosis, I am starting the 30 days of autism acceptance, which I found out about last month. It’s mostly on Tumblr, but I can barely use that. The first question asks me to introduce myself, so here goes.

Hi, I’m Astrid. I am 30-years-old – the psych report says I look older,argh – and I live in the Netherlands. I was first formally diagnosed withautism in 2007 and last rediagnosed a few days ago.

The first time I became aware of autism, was sometime in 1998, when its genetic origin was discussed in a news program. Something clicked, but I
didn’t immediately think I’m autistic. I was only eleven or twelve-years-old,
after all.

Then, in June of 2002, my father stormed into my room in the middle of the night. “Are you autistic or something?” he yelled over my loud music. In hindsight, this was the weirdest reason to think a teen is autistic that I’ve ever heard of. After all, having loud music on late at night is pretty normal teenage defiance.

Somehow, something clicked again, and this time I had the Internet and could google autism. For the next nearly two years, I was obsessed with the idea that I may have Asperger’s Syndrome. Asperger’s hadn’t been merged with the other autistic spectrum disorders yet, and to be honest I was quite prejudiced against people with “classic” autism.

In April of 2004, it was again a comment by my father that made me stop thinking I’m an Aspie. There was a newspaper article about highly sensitive persons and the controversy around labeling pretty much everyone. My father offhandly commented that I’m an “asparagus addict”. My high school tutor, who knew about my self-diagnosis, had told my parents I was a “hypochondriac” for it and my father agreed. My mother chimed in that she’d googled Asperger’s and was sure I didn’t have it. That was the end of my “asparagus addiction” for over 2 1/2 years.

In late 2006, my support wroker at the training hoem for the disabled I resided at informed me they were sending me to mental health for an autism assessment. They had already scheduled the first appointment, in fact. I was studying psychology at college at the time and I thought I was doing a good job of it. I couldn’t, in my prejudiced mind, reconcile that with an autism diagnosis. Several months later, once diagnosed, I was happy for it. After all, I’d by this time been quite disappointed on my path in college and my diagnosis helped me get accommodations I wouldn’t otherwise have gotten. It also helped me delay my being kicked out of the training home.

I looked over all my previous diagnoses that were summarized in the report I read this evening. I was diagnosed with an autism spectrum disorder at least three times and that doesn’t include the early 2007 diagnosis. After all, the report on that one may’ve disappeared too and I forgot that it may be significant, as it was the only time a psychiatrist diagnosed me. Besides, it was the same mental health agency that my psychiatrist in the community treatment team is part of. If she decides not to acknowledge my rediagnosis this year, I may have to get her to retrieve what’s left of those records.

Mummy Times Two

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.

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.

The Other Kind of “Pushy Parents”: My “Mind-Blowingly High” IQ and My Need for a Disability Label

I originally intended to write a post on my experience of the other kind of “pushy parents” when the “Hooked on Labels” report first came out. However, I felt somewhat kept from disclosing my parents’ take on what might or night not be wrong with me, because after all I’m still in the assessment process. A rather hurtful comment by my father last Friday made me want to write about this anyway.

By the other kind of “pushy parents”, I mean parents who deny their child a disability label or services for special needs children when the child needs this. Of course, I do have a disability label – I am blind -, and of course, I did go to special ed. It was clear to my special ed teachers and professionals that I had social, emotional and behavioral problems, among other issues, for which I needed help. Most of them however denied my high IQ. As a result, my parents fought for years to get this recognized and to get me an academically challenging education. They eventually won, only to have me go back into the care system after six years of mainstream secondary school.

My parents are incredibly disappointed in me. My father last Friday even went so far as to say that, in a contrived kind of way, I alwasy manage to end up in institutions. Somehow, with my mind-blowingly high IQ, I manage to always manipulate professionals into providing me support I don’t need.

Never mind that my IQ isn’t as mind-blowingly high as my parents would like to believe. My verbal IQ was once measured at 154. This is within the highly (not exceptionally) gifted range. This IQ score was measured exactly once. Other times, I scored much lower, usually around 130. My performance IQ can’t be measured on the Wechsler scales, because I am blind. There is a non-verbal intelligence test for visually impaired children (unfortunately there’s no adult version). I got it administered when I was eleven, but had so much trouble and was so easily frustrated that the ed psych couldn’t finish the test. Of course, my parents likely reasoned that this wasn’t due to poorer non-verbal skills but due to my refusing to do tactile assignments because I didn’t accept my blindness.

And of course, there is no reason for that low frustration tolerance and all the social, emotional and behavioral challenges I’ve ever had, except for my refusing to accept my blindness. My parents say I didn’t have behavioral challenges at all until I transferred to the school for the visually impaired. Makes me wonder why I had to transition at all, since it wasn’t because I had to learn Braille. After all, I transferred in the middle of Kindergarten and didn’t start Braille lessons till second grade.

However, even if I didn’t have obvious behavioral problems – ie. aggression or self-harm – as a young child, I definitely did show signs of social and emotional weaknesses and sensory issues. I was intrigued by strings of information, had trouble relating to other children and had stims and sensory aversions. These may not be problems a parent pays attention to when 1. the child has low vision and 2. the parent believes the child is mind-blowingly intelligent.

I understand some peculiarities in a child can be cute. I remember, for instane, my father bringing me the home supermarket’s peanut butter in the hospital because I wouldn’t eat the hospital’s brand. I was about five then. I remember my mother searching every clothes venue in town because I would only wear seamless socks. My parents were proud that, at age two, I had memorized the underground stops. My parents didn’t mind that, at the same age, I made this crawling-in-one-place movement in bed. They were surprised when I still did it at eight, frustrated when I still did it at twelve and outright angry when I still did it at eighteen. (For those who wonder, I stopped this behavior when I went to independence training at age nineteen.) All of these are potential signs of autism or similar disabilities. I wouldn’t have minded my parents denying that these are potential signs of a disability if they’d always accepted me for them. But they didn’t. Instead, they grew increasingly angry with me for my idiosycrasies. In fact, my self-discovery process relating to autism started with my father using “autistic” as an insult. He should be lucky that I cared to google the DSM criteria before self-identfying with a disorder that he’d insulted me with, or I’d have far more self-diagnoses than I ever had.

And here I am at age thirty, nearly fifteen years into my discovery process with regards to autism. Suddenly, somehow, the behavior that my parents found cute when I was two but were desperate for me to change when was eighteen, is no longer a problem. My mind-blowingly high IQ is, because I use it to con people into believing I deserve a disability label and services that I don’t need.

One last point. Suppose I do really have as mind-blowingly high an IQ as my father claims I do. So does he. Suppose I could use that mind-blowingly high IQ to manipuulate every single professional around me. So could he. So who out of us is the one who is being manipulative? Think on this.

Spectrum Sunday
Hooked on Labels - responses & other relevant posts linky

“Pushy Parents”?: A “Pushy Adult”‘s Opinion

There has been some talk around the UK special needs blogosphere about a recent report that suggests parents may be pushing for special needs diagnoses when these are not needed. The report is poignantly called “Hooked On Labels”. It points out that many teachers feel that pushy parents are responsible for unwarranted learning or behavioral difficulty diagnoses. The report does not ask for parents’ views and did not ask anyone to quantify how many parents might be working the system to gain diagnoses their children don’t need.

I understand both sides of the issue. My father used to work at a secondary school with at the time around 1500 students. Of these, at one point, 139 had a formal dyslexia diagnosis. At the time, it was thought that only 1% of the population have dyslexia, hence suggesting a serious overdiagnosis. I just googled it and found current estimated prevalence rates as high as 17%. Assuming that reading ability runs on a bell curve, this would indicate that those only one standard deviation below the norm would be classified as dyslexic. Now I have no clue whether reading ability runs on a bell curve, but if a disability occurs in as many as 17% of the population, in my opinion, it can barely be called a disability. This means the system is failing, not the student. Either that, or parents are being pushy.

I find it interesting that parents are automatically blamed for overdiagnosis of learning or behavioral difficulties. Some teachers surveyed for the report suggested parents were working the sysstem to get accommodations for their children. Some even said perhaps parents wanted these children to enter into more competitive education which they otherwise would not have been able enough for. I do believe there may be some parents who get their children labeled with disabilities in order for them to be able to compete. However, doesn’t that mean that schools are just too focused on competition rather than individual differences? If you need a diagnosis to get your idnividual strengths and weaknesses recognized, isn’t that the problem rather than parents seeking that diagnosis?

I have always, ever since I first self-diagnosed with autism in 2002, believed that, if a child doesn’t cope, either the child has something going on or the system is screwed. I have always advocated for more individualized educational programming, but this doesn’t happen yet.

Mind you, I disapprove of parents seeking labels for their child – or adults seeking a label for themselves – just so they can get into special ed, collect disability benefits or the like. That’s not fair and if it happens, it needs to stop. This is however talking extreme examples. With how restrictive the special education and benefits systems are these days, I don’t believe many people would be able to fake themselves or their children into them. Where accommodations at home or at school are concerned, I don’t think anything is wrong with demanding them. Like I said, the need for labels to qualify for them, is the problem.

Some people see me as “working the system”, too. They don’t deny that I’m disabled – they can’t deny my blindness -, but they do deny that I’m as disabled as I claim to be. I asked for a second opinion when I was given a diagnosis that by some is perceived as meaning I misuse the system. Now dependent personality disorder is a genuine mental health condition, not willful behavior, but even my psychologist has some trouble seeing that. Treatment for DPD is not a kick in the behind to solve your own shit, but even my psychologist has some trouble seeing that, too.

In my case, the DPD diagnosis resulted from the same flawed logic that might get parents to seek learning or behavioral difficulty diagnoses for their children: the need to always have a label to explain every single need a person has. The occupational therapist from the blindness agency said my difficulty making tea wasn’t due to blindness. Another occupational therapist said it wasn’t due to motor difficulties. My psychologist assumed there are no executive functioning diffiuclties, so it wans’t due to that either. Since there needs to be some explanation, my psychologist decided to consider it a sign of dependence and to label that dependence DPD. As a side note, my husband tried to make tea with his eyes closed and it was way harder than it is with his eyes open.

I am often told that I desperately want to be different and that’s why I seek an autism diagnosis. I do see myself as different indeed, but I don’t need an autism diagnosis for that. There’s “highly sensitive”, “introverted”, “intellectually gifted”, and probably others that don’t require a shrink. I don’t even seek an autism diagnosis specifically – I seek recognition of my impairments.

Like I said, I have always felt that, if I fall through the cracks with the support I do get, either something’s wrong with me or something’s wrong with the support system. If blindness could get me the support I need, I wouldn’t have sought a mental diagnosis. For your information, it wasn’t me who sought my first autism diagnosis in 2007. They were professionals working with the blind. If I am just a lazy, unmotivated fatass who willfully misuses the system, I shouldn’t even get a DPD diagnosis – the label for that is malingering.

Back to pushy parents. It is my firm belief that there are as many parents who ask for labels their child doesn’t need, as there are parents who deny their child labels they do need. The solution to both is individualized support.

Hooked on Labels - responses & other relevant posts linky

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.