Tag Archives: Self-Diagnosis

Dropping the Mask: Does it Take a Diagnosis? #TakeTheMaskOff

Today, the theme for #TakeTheMaskOff is diagnosis or self-discovery and its effects on masking. This is applied mostly to the experience of being autistic, but I can relate to it from a trauma survivor perspective too.

I haven’t yet read any of the other contributions for this week, but I assume the idea behind this challenge is that discovering you’re autistic, either through professional diagnosis or not, can help you drop a facade.

This is definitely true for me. When I was first diagnosed with autism in 2007, my staff claimed that I was using it as an excuse, because I reacted more to for example loud noises than I’d done before diagnosis. Similarly, my parents claimed that I was over-protected by the staff who felt I’m autistic and this led to my psychiatric hospitalization in November of that year.

To be honest, yes, I may’ve started to use autism more as an explanation for my behavior once I was diagnosed than I did pre-diagnosis. Note that I say “explanation”, not “excuse”. I don’t feel I need an excuse to act like myself, unless acting like myself were harming other people. Saying that we use autism as an excuse for our behavior is really saying that we should conform to non-autistic standards of behavior at any cost. Autism is an explanation for why I can’t conform to these standards, but even if I could, that doesn’t mean I should.

Then again, once my autism diagnosis was taken away in 2016, I did feel like I needed an excuse. And so did many other people. I was kicked out of autism communities that I’d been a valued part of for years. Suddenly, I’d been faking and manipulating and “acting autistic-like” all those years rather than just having been my autistic self. One Dutch autistic women’s forum’s members and admins were notorious for spinning all kinds of theories on why I’d been pretending to be autistic all those years and had finally been unmasked.

<PAnd at long last, I started to believe these people. I started to believe that self-diagnosis may be valid for other people, but it isn't for me. I started to wonder whether my parents were right after all that I'd been fooling every psychologist and psychiatrist before this one into believing I'm autistic.

This process of self-doubt and shame led to my first real episoede of depression. After all, if I’m not autistic, why did I burn out and land in a mental hospital? I’d been diagnosed with dependent personality disorder by the psychologist who removed my autism diagnosis, so were my parents right after all? I suddenly felt like I needed an excuse to act autistic-like, as if being autistic is indeed less than, not just different from being neurotypical.

I sought an independent second opinion and was rediagnosed with autism in May of 2017. I still am not cured of the idea that it takes a professional diagnosis to “excuse” a person from acting non-autistic. I don’t apply this to other people, but I do still apply it to myself and that’s hard.

I originally posted this to my other blog. I use that blog to counteract this self-stigmatizing attitude. This, after all, also applies to my status as a trauma survivor. I got my autism diagnosis back, but I never got and most likely never will get my trauma-related diagnoses back. I still mask, hiding my trauma-related symptoms when I can. And that’s not usually hepful in the long run.

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

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.

Diagnosis: Finding Out About Autism #AtoZChallenge

Welcome to the A to Z Challenge, day four. Today, I have a bit of a personal post for you. I am going to share what it was like for me to get diagnosed with autism. My experience will hopefully empower adults who suspect they are autistic to make the right choice for themselves.

First, I was “self-diagnosed” for several years at around age sixteen. I didn’t like the term “self-diagnosis” at the time, because I didn’t feel a layperson (or even a professional) could diagnose themself with autism or any such condition. I’d rather say that I suspected I was on the spectrum.

My father’s comments both caused me to start suspecting I’m autistic and to stop suspecting it again – at least openly. One day in June of 2002, he came to my room at night yelling whether I was autistic or something (in the tone of voice that parents use to discipline their children). I wasn’t sure what being up late at night playing music, which bothered my father, had to do with autism, but somehow soemthing clicked with me. Maybe I was autistic after all.

A little under two years later, my father read me a newspaper article on fashionable disorders like PDD-NOS, and said he knew I had one of those conditions too: I had an asparagus addiction (bad wordplay on the pronounciation of “Asperger’s”). I decided that day that I wasn’t autistic after all.

Many adults nowadays suspect they are autistic long before they get formally diagnosed. There are many reasons why a person might seek a formal diagnosis, such as:

  • Getting professional confirmation of their suspection.

  • Having less trouble getting accommodations at work or in school (they can prove that they have a disability and are protected by the ADA or similar laws).

  • Getting disability-related services, such as independent living support.

  • Being able to pursue treatment.

There are also many reasons why people might decide not to seek a formal diagnosis and stay self-diagnosed. For example:

  • They may have negative experiences with psychiatrists, psychologists or other healthcare professionals, whom they will need to see in order to get diagnosed.

  • Some people don’t view autism as a disorder, so don’t believe they need to be diagnosed with it by a mental health professional. They just know are autistic.

  • A diagnosis may lead to an increased risk of discrimination, for example for health insurance or in employment situations.

IN late 2006, I myself was pretty much falling apart and hardly able to function in the independence training home I lived at. It wasn’t my decision to get me formally diagnosed, it was the staff’s. In fact, I couldn’t communicate to my GP that I wanted a referral to mental health services. It wasn’t even until the staff said they were wanting me to be assessed for autism that I started believing I might be autistic after all again.

The process of getting diagnosed may vary depending on the person’s age, cognitive ability, etc. In my case, for my first assessment, I had some meetings with a psychiatrist and then my parents were asked to come over to answer questions about my early development. If parents aren’t available, a sibling or other relative who has known the person being assessed for a long time, will be asked to complete this assessment.

Because the paperwork got lost, I had to be reassessed half a year after my initial diagnosis. This assessment consisted of the AQ-test (which stands for either autism quotient or autism questionnaire). This is a fifty-item questionnaire which asks about autism symptoms. I do not feel this questionnaire is worth much, as it can be completed by anyone online and someone who’s suspected they have autism for a while, can easily answer the questions in their favor. I also had to complete a DSM assessment. The DSM is the psychiatrist’s manual with criteria for each disorder. In a DSM assessment for autism, they walk you through the criteria and ask you to explain whether you meet them and if so, why. Lastly, my parents had to complete a developmental assessment again.

For a reason unbeknownst to me, I had to be assessed yet again in 2010, three years after the second assessment. I was this time given the AQ-test again plus the Dewey Story Test and something similar to a DSM assessment. The Dewey Story Test is a test of social awareness. It consists of a number of scenarios about human interaction. The person being assessed has to rate the person’s behavior at certain points in the scenario, with ratings ranging from “normal” to “shocking”. This test, too, at least used to be available online, though I can’t find an English version right now. I scored quite poorly on this test and again scored high on the AQ-test.

Other elements of an autism assessment might include IQ testing, neuropsychological testing or specific observation or interview instruments for diagnosing autism. An example of this is the Autism Diagnostic Observation Schedule (ADOS).

Unfortunately, the paperwork from my second diagnostic assessment, which was the most comprehensive, got lost last year too. Because I am going to get a consultation at the country’s top notch center for autism, I fear I’ll need to be assessed once again. This is because they require a clinical psychologist’s or psychiatrist’s diagnosis and the third assessment was by an educational psychologist. Besides, my parents weren’t asked for a developmental ssessment this time, because firstly they wouldn’t want to come over again and secondly I didn’t want them to. Unfortunately, because I badly do need services and treatment, I have no choice but to get reassessed if that’s what they want.