Tag Archives: 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.

How Far I’ve Come

Today, in a complex PTSD support group, a member shared her story of hope and healing to lift other members up. I was inspired to share mine. Not that I’m as successful as she is, but I’ve come a long way on my healing journey especially given how deeply troubled I was several years ago. Regular readers will know most of this already, but I’m still going to share where I’ve come from and how far I’ve come so far.

In 2007, I started university in Nijmegen. I didn’t really want to go to university, but I felt I had to because my parents expected me to. I felt I had to live up to their expectations or I wouldn’t be worth much and would not have anyone to support me. My parents had instilled in me that I wasn’t wired for relationships, so if they decided to abandon me, I’d have no-one left.

Two months in and I crashed. I was so dysregulated and suicidal that I had to be admitted to a mental hospital. The psychiatrist who admitted me felt I needed supported housing. We searched for this for many years, but no place wanted me.

Meanwhile, the other half and I started dating. This could’ve given me some hope that I may in fact be able to develop social and even romantic relationships and wouldn’t be dependent on my parents for the rest of my life. You see, despite the fact that my parents only ever visited the hospital to argue with my treatment team, I was still heavily emotionally dependent on them. I still felt I needed their approval to be able to have any sort of meaningful life.

That changed around late 2010 to early 2011. The other half had proposed to me in June of 2010. I was diagnosed with dissociative identity disorder and PTSD in late 2010. Finally finding a treatment provider who believed me and realizing the other half was here to stick by me, gave me the strength to stick up for myself.

I still had many setbacks in the years that followed. I changed hospitals and my new psychologist didn’t believe I had DID/PTSD. The next psychologist even removed my autism diagnosis that I’d had for many years. She diagnosed me with dependent personality disorder, not because I was passive and compliant, but because I was too assertive, claiming care she felt I didn’t need.

In early 2017, I finally found the determination and courage to fight like a lioness for what I need. I sought an independent second opinion on my diagnosis. I started the process of finding suitable support, eventually enlisting the Center for Consultation and Expertise. I started to realize that I’m not just the crazy one in my family. In fact, even though no-one has a diagnosis other than me, I’m pretty sure my entire family has fallen a bit off their rocker. I finally realized (though I still don’t fully feel it) that the trauma I endured wasn’t my fault.

These strong parts of me are still a bit split off from the core of me, but that’s okay. Ultimately, I will hopefully learn to synthesize their qualities with the ones of the weaker or smaller ones. I don’t need to become “one”, but I hope I can someday live as the whole person, made up of all these parts, that I am.

Suddenly I Am

Sometimes, I am the wise woman. Inside, I am a college sophomore, though on the outside, life has moved on. I call myself Clarissa. I can talk up a storm about psychology and psychiatry, arguing that, yes, in fact autistic people can have multiple personalities. It’s a shame people tell me they can’t just because that person’s psychiatrist has told them so. It’s nowhere in the DSM-IV or DSM-5. In fact, autistic people are quite a bit more likely to suffer from trauma-related disorders like this.

Then suddenly, I am that autistic teen. Inside, I am 19-years-old, though on the outside, life has moved on. I call myself Carol. I am not your typical intelligent Aspie. In fact, I am quite severely autistic. I use repetitive language and engage in self-stimulatory behavior all the time. I can barely function at a day activities center for people with severe intellectual disabilities, even though I’m not intellectually disabled. I’m not gifted either, no matter what some people like to believe. I’m just average intellectually, but emotionally, I’m severely impaired.

Then suddenly, I am a little girl. Inside, I’m a shy and scared five-year-old, though on the outside, life has moved on. I call myself Little. By the time I first emerged, it was thought I was the youngest alter. I am not. I can’t breathe sometimes. Sometimes, I have to color inside the lines, and I can’t, because I can’t see very well. I am very scared.

Then suddenly, I am a precocious seven-year-old. Inside, I take care of the baby self (with help from the inner mother figure), though on the outside, life has moved on. I call myself Suzanne. As much as I want to help the baby,I also want my stuffie sheep meh-beh and beh-meh.

Then suddenly, I am that mother figure. Inside, I am 28-years-old, though on the outside, even now life has moved on. I call myself Esther. I sometimes go on Mommy forums as a child advocate, even though in real life, I don’t have any children. I grievethis fact, but don’t let it show.

Then suddenly, I am a childfree woman. Inside, I am 35-years-old, t hough life hasn’t caught up with me yet. I call myself Annemiek. I like to craft and like my childfree life with just my husband and Barry, our cat.

I don’t know whether switching several times a day, like I described above, is common in people with dissociative disorders. I don’t have a diagnosis of a dissociative disorder anymore, after all. To be honest, I don’t care. I have been told, when I write on this blog about my parts, that I’m obviously a really bad case of borderline personality disorder (BPD( trying to fake having dissociative identity disorder (DID). I don’t care. This is my experience and I don’t care what label best describes it.

This is not always how switching happens either. Usually, one of the functional adult parts is out in the body or “in front” about 80% of the time, though it depends which of the functional adult parts is. I didn’t describe either of the two current main fronters in this post.

It is also possible that multiple parts are out in the body at the same time. This can lead to what psychiatrists call identity confusion and also depersonalization and derealization, where you feel as though your body, mind or the world around you is unreal. The switchig I described above is called identity alteration. Then there is amnesia, which is a hallmark syptom of DID we don’t experience that often at all (so I don’t believe we actually have DID).

With this post, I didn’t mean to give you a thorough overview of dissociation. In fact, it was what randomly popped up in my mind when reading today’s prompt on The Daily Post, which is Suddenly. Like I said, I am not claiming that my experience is representative for those with dissociative disorders. It is just a tiny part of my experience, too.

Day Activities: Why Do I Seem to Have High Support Needs?

Yesterday, I had a meeting with my day activities and home support staff, my comunity psychiatric nurse (CPN) and the social consultant (local authority person who decides on care funding) in charge of my case. My mother-in-law also attended. The reason for the meeting was my trouble functioning at day activities.

I go to a day center for people with intellectual disabilities and attend a group within the center for people with severe intellectual and multiple disabilities. I don’t have an intellectual disability, but did seem to do best at this sensory-based group up until recently. Then, three new service users joined us, leading to increasing stimulation, stress and staff workloads. I was increasingly overloaded and irritable, which led to the staff cutting my hours because they couldn’t deal with me on top of the other high-support service users for a full day.

The problem is there’s no clear-cut diagnosis to back up why I function best at a low-stress, sensory-based, high-support group. I mean, yeah, I’m blind, but most people who are blind can work regular jobs. Yeah, I’m autistic, but only diagnosed with autism spectrum disorder level 1 (ie. “high-functioning” autism or Asperger’s Syndrome). Yeah, I have mild motor impairments, but my doctor doesn’t know or can’t tell me to what extent they’re diagnosable (as mild cerebral palsy or something else). Yeah, I have mental health issues, but no-one has a clue to what extent these affect me and what they’re even diagnosable as.

As a result, some professionals and non-professionals choose to deny I have high support needs and tell me it’s all dependence, manipulation or attention-seeking. I was lucky that, with one of these professionals being my former psychologist who got me in touch with my current day center, the day center staff and management were up until recently more than willing to accomodate me. For instance, I started day activities at the industrial group at this center, but was soon moved to the sensory group despite, like I said, not even having an intellectual disability, let alone a severe one.

Now that I’m even falling apart at this group, I hear different opinions on where to go from here. At one point, my home support coordinator said maybe the gap between myself and the other service users at the sensory group is too wide, so we need to look at a different kind of place, like a sheltered art shop. I disagreed and not just because my art-making skills are mediocre at best. At more “job-like” day activities places like this, there’s usually more pressure and less support. My day activities staff agreed, adding that I’d tried the industrial group already.

My CPN’s coworker suggested a care farm. As much as I love animals, I know I won’t even be able to navigate a farm without a sighted guide, let alone care for the animals without one-on-one. My mother suggested I look for day activities tailored to the blind. These don’t exist in my area. Besides, I could barely function at the leisure groups at the blindess training center I attended in 2005. My mother said I may be able to now, but I think it unlikely. These places expect a level of independence I don’t have. I mean, I’ve seen my partially sighted friend make soap completely independently after being instructed by me just once, while I still need practically hands-on support after many attempts.

I’m on the verge of crying as I write this. I completed grammar school, for goodness’ sake! Granted, I burned out the minute I left, but I did it nonetheless. Why can’t I even function at a group where people with profound intellectual disabilities can? Or am I really one giant dependent, manipulative, attention-seeking waste of resources?

My CPN is going to contact the Center for Consultation an dExpertise on me. In 2010, they were briefly involved in my case. The consultant wrote in her report that she thinks it’s weird that I’m so cognitively capable and yet cannot do simple activities of daily living such as prpearing my own breakfast. She also wrote something in the report about not knowing whether I’m eliciting care. In other words, she couldn’t say whether or not I’m just one giant dependent, manipulative, attention-seeking waste of resources either. Sigh.

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

Doctor #WotW #PoCoLo

So I had two doctor’s appointments this week. First, like I said last Monday, I was seeing my GP on Wednesday regarding my mild motor skills impairments. A little explanation is in order. I have always had fine and gross motor skills impairments. Since they are so mild, they have always seemed practically non-existent in the face of the major disability of my blindness. As a child, I held my parents’ hand till I was at least twelve. This was however seen as a lack of self-confidence. I did use my white cane when prompted, but since I had trouble accepting my deterioratng vision, I apparently chose dependence on others over the white cane. When I did use it though, I often used it as a walking stick.

Now I’m no longer ashamed of the white cane. I in fact prefer to have it with me even if I walk sighted guide, because then at least people will see I’m blind. Still, despite having had countless orientation and mobility training sessions, I still cannot seem to use the white cane in its proper way. Even so, I feel very unsteady when walking independently. I would love to learn to improve, because, even though there is no route in our village I’d like to learn to walk without anyone accompanying me, I’d love to be able to walk without holding onto someone’s arm. That would enable me to go to events on my own by accessible transportation, which I now avoid due to not wanting to ask strangers to be my guide.

As for my fine motor skills impairments, I cannot eat neatly no matter how hard I try. I find this terribly embarrassing. I also struggle with preparing my own breakfast, pouring myself drinks and other skills that require the use of both hands. I can perform tasks that require just my right hand just fine and I can use my left hand for support, but activities that require coordinating both hands, just don’t work without adaptations. I’m curious to know whether such adaptations exist.

My GP looked up what seemed to have been a letter written by my previous GP in the institution. It said that I was born prematurely (correct), had a stroke as a baby (not correct, it was a brain bleed) and developed hydrocephalus as a result (correct). The resulting impairments are diagnosable as acquired brain injury. I seem to have read that when a person sustains a brain injury before age one year (or three in some countries), it’s not diagnosed as an ABI. The correct diagnosis, well, I don’t know. Motor impairments are, or so Dr. Google tells me, often diagnosed as cerebral palsy, but then they have to be severe enough, which I doubt mine are. I didn’t question the doctor though, although the confusing diagnosis did frustrate me more than I’d hoped it would. After all, my intention was to ask about treatment options.

The doctor told me that, if I’ve been stable for over two years, there’s no hope for neurological improvement. This timeframe is longer in children, but since I’m now 31, I’ll pretty much have to learn to live with my impairments. Still, I might benefit from occupational therapy and possibly a little physical therapy to help me learn to use adaptations and learn compensatory strategies. The doctor is going to contact the nearest rehabilitation center to ask whether an occupational therapist can take me on. My blindness may be an issue though, in which case I’ll need to see an occupational therapist at the blindness agency. They don’t often know acquired brain injury though. Seeing both is not an option insurance-wise.

I also saw the mental health agency’s general doctor on Thursday. The physical health screening with the nurse and all the things I didn’t know about my childhood conditions, were what had prompted me to see my GP. I discussed the GP visit for a bit. Then we went over the lab work the doctor had ordered. Everything was within the normal range except for one thing, creatinine, which was a little high. The most likely reason for this is that I don’t drink enough water.

With these two appointments and my having been having them on my mind all week, my word of the week is going to be “doctor”.

The Reading Residence
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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 autistic, 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 with autism 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 home 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