Tag Archives: Autism

Anxiety and Depression in Children With and Without Autism #AtoZChallenge

Welcome to day one on the 2017 #AtoZChallenge on neurodevelopmental disorders. I experience a great deal of anxiety around this challenge particularly because, like I said in my theme reveal post, I am currently in the re-assessment process. On the day I published my theme reveal post, I received an E-mail from the clinical neuropsychologist in charge of my second opinion answering questions I had taken to my psychological assessment. One of them concerned depression. I have suffered from depressive symptoms since childhood. I pointed this out, in a way to reassure her that depression is somewhat normal for me and hence she didn’t need to pull out the major depressive disorder criteria. A reaction i did not expect, was that depression presents itself differently in children and for this reason it might be that in fact my challenging behavior was a symptom of childhood-onset depression.

I share this story because, for today, I am focusing on anxiety and depression as they relate to autism. I will start by sharing a bit about how these conditions present themselves in typical children, as it might be I’m not autistic or suffering from any neurodevelopmental condition after all.

Depression and Anxiety in Typical Children

Depression and anxiety are serious conditions that are different from normal sadness or worry. Common symptoms in anyone with depression or anxiety include negative thoughts, excessive worrying, diffculty concentrating, feelings of hopelessness or worthlessness. Particulalrly in youg children, depression and anxiety are however hard to recognize, as they may present differently than they would in older children or adults. For example, depression may show as irritability and anger, withdrawal, vocal outbursts or crying, or physical symptoms such as headaches or stomach problems. Anxiety can also present with physical symptoms or it may show as developmental regression. Some children with anxiety disorders may become clingy, fidget a lot or go to the toilet frequently.

It may be tempting to label a child who displays disruptive behavior, such as irritability, as “naughty”. However, treating behavior related to anxiety or depression like it is willful defiance, will only make it worse. Rather, if a child shows significantly more behavoral issues than their peers, it is advised to seek professional help.

Anxiety and Depression in Autistic Children

Many of the signs of childhood anxiety and depression are common in autistic children. It may therefore be hard to tell whether a symptom is due to anxiety or depression or it is due to autsm. For example, many autistic children (and adults) fidget as a way of regulating sensory input. Treating this and other sensory difficulties as anxiety will make it worse, as treatment for anxiety might include exposure. If a sensory stimulus is physically uncomfortable or painful rather than feared, no amount of exposure will cure this.

Social withdrawal is also a common sign of both childhood anxiety and depression and autism. However, to autistic children and adults, social interaction is often overwhelming, so again, withdrawal may be a coping strategy rather than a symptom.

Interestngly, some autistics may appear less autistic when they’re depressed or anxious. This may be the case if the autistic’s normal social interaction style is “active but odd”, eg. talking on and on about a particular topic without regard for the other person. For example, I once read about a teenage boy who usually kept on talking about trains. When he stopped perseverating on this topic, his carers assumed he was doing better. After all, he was showing less socially disruptive behavior. In reality, the boy was seriously depressed. He was, for him, withdrawn and had lost interest in what used to be a favorite topic of his.

#AtoZChallenge Theme Reveal 2017: Maybe This Is a Big Mistake, But…

As regular visitors to my blog know, I am currently in the re-assessment process regarding my psychiatric diagnosis. Last year, my psychologist removed my autism diagnosis, that I’d had since 2007. I initially went along, because her reasoning – that I had some type of brain njury instead – seemed plausible at the time. Besides, I wanted to spare myself the emotional rollercoaster of yet another assessment. I had several since my initial diagnosis after all, though most of these reports disappeared. After my psychologist decided to diagnose me with just a personality disorder and depression though, I decided to seek an independent second opinion anyway. I’ve never had an assessment more thorough than this one, I must admit.

I participated in the #AtoZChallenge twice already. In 2015, I had autism as my theme. In 2016, I went with general mental health. This year, I’m still in doubt even as I write this post. Brain injury, premature birth and disability rights crossed my mind, but I have a hard time thinking of topics for each letter that are relevant to these themes. Since I don’t know yet what the outcome of my re-assessment will be, I am rather daring by picking “neurodevelopmental disorders” again. This is broader than autism, so I can have an excuse and write on unrelated topics if it turns out I’m not diagnosable as autistic after all. Neurodevelopental disorders are still a major (special) interest of mine. However, I don’t know yet how I will handle the outcome of my assessment, so it might be I’ll be so depressed I’ll stop blogging. My blog has been rather inactive lately anyway. If it turns out I’m not diagnosed with autism, I’ll hopefully finish the challenge and then close the chapter. I contemplated skipping A to Z and choosing this theme for #Write31Days in October (if that challenge stll exists) should I be diagnosed with autism again. However, maybe my blog will have died of inactivity by then. In an attempt to kick it when it’s down, I’ll take on the #AtoZChallenge anyway. Wish me luck.

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.

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

A Call to Revive the Concept of “Cousins” in the Autistic Community

Today, I was rejected from a Dutch autistic women’s forum. I had already been kicked off last August for having lost my formal autism diagnosis, but had reapplied because I am in the process of getting a second opinion. Back then, my losing my diagnosis had stirred up a lot of commentary as to why I’d been presenting as autistic for six years – the time that I’d been a member of the forum – if I wasn’t. Well, for one thing, that’s just one professional’s opinion that I’m not autistic, while three others said I am. Not recently, but since when does one lose an autism diagnosis as one ages? However, the fact that the admins doubted I’d get anything but suspicion and hostility if I came back, prompted them to reject me for good. Thankfully, people in other autism groups, especially international ones, were still welcoming and supportive.

Then I read Mel Bagg’s blog post from last month, which was on the subject of autistics and “cousins”. A “cousin” is someone who is not autisitc, but who has some significant experiences that are similar to those experienced by autistics due to a related condition. For example, Mel Baggs tells the story of a person with hydrocephalus who could relate to many of the social and communicative difficulties that autistics experience, but wasn’t autistic. As I have hydrocephalus myself, this struck a chord with me.

Mel Baggs”post is a call to revive the concept of “cousins” in the autistic community. I applaud this, for it’d finally mean I could fully feel in place in the autistic comunity again. I mean, autistic communities used to ask that no neurotypicals join or participate. now they’re asking allistics – a term I’d never heard of but which means non-autistics – to keep out. Though most internatoinal communities who state allistics are not allowed, welcome self-diagnosed autistics, I still feel a bit left out.

Like Mel Baggs says, the autistic community can be very excluisionary. An example is the Dutch forum I got kicked off from. I didn’t know this until I lost my diagnosis, but apparently it has the rule that people who suspect they’re autistic get a year to get a formal diagnosis and if they don’t get it, they’re out. I mentioned this is a women’s forum for a reason, because women have a particularly hard time getting formally diagnosed. The other main Dutch autistic community, open to all genders, doesn’t ask for a formal diagnosis. Another act of exclusion applied by autistic communities is the assumption that Aspies (people with Asperger’s Syndrome) are somehow fundamentally dfferent from other autistics, and subsequently the creation of Aspie-only spaces. Other groups allow “high-functioning” autistics in only. This, obviously, perpetuates the division of the autistic community, which perpetuates discrimination. For example, if Aspies are fundamnetally different from other autistics, people can use the idea that Aspies are not really disabled, which is populated by some, to exclude anyone they see as an Aspie from protection by laws like the ADA. They can also continue advocating for harmful “treatments” against autistic people’s wishes based on the idea that autistics who can advocate for themselves are not “autistic enough”. I don’t say that the autistic community is responsible for discrimination by non-disabled people. I do say that those who exclude some people from the community based on being “not really autistic”, “not autistic enough” or too “low-functioning” or “high-functioning”, do contribute to it.

Back to “cousins”. The criteria for autism keep changing over time. I easily met DSM-IV criteria for Asperger’s Syndrome. I probably meet DSM-5 criteria for autism spectrum disorder too. However, I also have hydrocephalus, which according to my current psychologist, means I can’t be autistic. I believe DSM-IV might agree, though DSM-5 definitely doesn’t. Does the fact that I meet the criteria for an autism spectrum disorder, mean I’m legitimately autistic, or does the fact that I have hydrocephalus, mean I’m not? Really, that shouldn’t matter, if “cousins” are welcomed into the autisitic community again. After all, what counts then is not diagnosis or self-diagnosis, but whether I relate to the lived experience of autistic people. It also means the community can no longer be divided along the lines of stereotypes, formal diagnosis or the lack thereof, or suchlike. Everyone who shares the experience of social and communication problems, is welcome. This in turn means we can form a better front against discrimination, because we no longer fall into traps like being accused of not being disabled enough for protection.