Day Activities #WotW

Oh man, I haven’t written in nearly two weeks. This isn’t unheard of on my blog over the past year or so, but it does feel a little weird, given that I fully intended on writing more in May. I have now been home from the mental institution for two weeks and it’s going better than expected. I’m of course still having my ups and downs, but I haven’t been in a full-blown crisis yet.

As I mentioned in my last post, I started day activities May 9. It was really hard at first. Like I said, the group I’ve been placed in does simple manual labor like packaging and sorting tasks. I found this boring and difficult at the same time. Last week though, I found an activity that is useful as well as doable for me. It’s making paper props. That sounds incredibly dumb and useless, but paper props are used to store paint cans with, so that the paper will absorb the paint should a can leak. My staff said this activity drives her crazy, but it truly is a sensory friendly activity to me.

Last week, we also did some gardening. I don’t like my hands getting dirty, so I had trouble with this activity. However, while going to the garden, someone mentioned a set of swings. I at first thought the swings were only to be used by those with more severe disabilities. Then someone from my group went on them, so I asked the staff whether I could use them too. It was fun!

However, the best activity yet was snoezelen. This Wednesday, I was very irritable, the staff took me to a room. “Have you heard of the snoezelen room?” he asked. I had heard of this and had in fact asked my treatment team at the institution if I could try this at the intellectual disability unit about a year ago. They said “No.” After all, I wouldn’t be able to do this once home. Snoezelen was developed in the Netherlands and there isn’t a proper English term for it. It is a particular type of sensory play. Basically, in a snoezelen room, the service user or their staff can control the entire sensory enviornment. For example, there are lights, soothing music, soft spots to sit in, etc. I haven’t discovered all there is to this room yet. Maybe tomorrow, the staff will show me around.

on Thursday and Friday, when I became slightly irritable, the staff took me to the snoezelen room again. On Friday, the staff asked if I would like to have this in my daily schedule. I felt a little weird, as I had gotten the idea from my institution treatment team that this is only for people with severe intellectual disabilities. The staff however said that if it helps me, it’s fine.

I’m choosing “day activities” as my word for the week. Next week, we’ll unfortunately have Thursday ad Friday off, but I’m hoping to enjoy Monday through Wednesday mornings there.

The Reading Residence

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

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

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

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

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

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

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

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

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

My Autism Diagnosis Story

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

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

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

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

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

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

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

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

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

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

Mummy Times Two

My Diagnostic Rollercoaster Ride #BADD2017

Today is Blogging Against Disablism Day. It would also have been my discharge date from the mental institution. Unfortunately, virtually no after care has been arranged yet. This didn’t keep my psychologist from determining I could leave today, even despite my husband sending her an E-mail voicing his disapproval on Tuesday. I had my “exit meeting” on Wednesday. In this meeting, my psychologist explained that every other time, she and the social worker can get after care arranged within a month, so if we couldn’t get it arranged within three months for me, that was my fault. Apparently, they’d handed me the responsibility of arranging for my own after care, only without telling me. The patient advocate couldn’t do anything, because I’d have my first appointment with community mental health on Friday and that was all my psychologist was legally required to do in the way of after care. I called my mother-in-law in a panic. She convinced my psychologist to give me one more week in the institution. My definitive discharge date is May 8.

Today I also had my conclusive appointment for the independent second opinion/re-assessment I requested regarding my diagnosis. I haven’t yet seen the report, as the psychologist has yet to finish that, but she did tell me her conclusions. I am happy to share that I got my autism diagnosis back!

It’s pretty unreal. I feel the same way I felt when I was first told I had been diagnosed with dependent personality disorder. Only this time the dreamy state I’m thinking I’ll awaken from any moment, isn’t a nightmare. That’s not to say the psychologist’s opinions are all fluff. In fact, though she didn’t say this, it may be the psychologist agrees with my DPD diagnosis. Not that I care much, since the recommendations she made for reinforcing my independence were pretty good. Besides, by now I’ve been used to being seen as one little piece of learned helplessness. I guess that’s a form of learned helplessness itself.

It’s been one awful rollercoaster ride this past year or so. It started in late June of 2016, when my psychologist pulled me out of day activities to casually inform me she had changed my descriptive diagnosis. Since the Dutch health system is built around diagnosis-treatment combinations, I worried some. However, your DSM-IV (we still use DSM-IV here) classification, not your descriptive diagnosis, determines what care you can get, and my psychologist hadn’t said she’d changed my DSM-IV classification. She had, but I didn’t find out about that till more than a month later.

I remember vividly that same day telling a day activities staff at a place I wanted to do day activities at once discharged, that I was stuck in diagnotic limbo. Interestingly, I made an appointment for a formal intake interview just an hour before my appointment with the independent psychologist.

Then came the process of applying for an independent second opinion. I faced a lot of hostility during this process and I don’t just mean from my psychologist. I mean, my psychologist tried to keep the peace and calm by negotiating a diagnosis we both could live with. In hindsight, that’s the strangest agreement I’ve ever come to. However, the worst hostility came from within the Dutch autistic community. I was a member of a Dutch forum, where apparently you had to have an official diagnosis or be in the process of obtainng one to get in. Once I posted about my psychologist removing my autis diagnosis, my psychologist was treated like the ultimate autority on my diagnosis and the person who finally unmasked my manipulative nature. When I said I had been diagnosed autistic three times before, this was used against me. After all, how many second or third or fourth or fifth opinions do I get?

By early December, when I was denied access to said autism forum for good, I started taking into account the possibility that the independent assessor agreed I’m not autistic. I never fully got that into my system and that was what kept me going: I still had hope that my self-image wouldn’t be shattered to pieces. That I wouldn’t have to nearly drown for the rest of my life because my every support need is just dependency.

During January till mid-April, I sank to the lowest point I’ve been at for a long time. I was depressed and suiciidal and making plans for a final step. Because this was when my assessment took place, the psychologist believes I have depression. I clarified today that, while I’m always slightly depressed, it isn’t at clinical levels most of the time.

I am so glad the outcome of my assessment is as it is. Now I still need my new community treatment team to take into account this diagnosis. I’d rather not endure another rollercoaster ride like this.

When Intense Emotions Take Over My Mind

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

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

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

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

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

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

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

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

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

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.

Rays of Sunlight – March 2017

The past few weeks have been rather rough. My depression and anxiety symptoms have been rather bad. Though it’s mostly related to my psychiatric re-assessment and the plan to move out of the institution by May 1, these are not situations I can change. I also find it particularly hard to change my thoughts about them. All I can do is try to focus on the little things I do enjoy. Yesterday, I discovered the Liked and Loved linky. It is a beautiful way for people to share what they’ve liked and loved in the past month. Most people post about products. I will mention some of these too, but will also share the experiences that I’ve liked and loved. I therefore title this post “Rays of sunlight”.

I Love Myself Box

I Love Myself Box

First, a product – or several. In early February, I ordered a box called the I Love Myself box at a little Dutch skincare store. It isn’t a monthly subscription box, but the surprise effect is similar. When you order it, you get a questionnaire that allows the store owner to get an idea of what products might suit you. You then get a personalized surprise box of skin care, makeup, bath and related products. My box is lovely, though I haven’t yet tried out every product. I got a lip gloss with a lovely scent, a box of tiny wax melts (oh, how I love those!), some facial care products, a hand cream and a bath bomb. I will need to bathe soon, as we don’t have a tub at home.

Pizza

My husband has been calling Saturdays “Pizzaturdays” and getting me pizza almost every week. In addition, a few weeks ago the staff at my unit got takeout pizza for those who wanted it and could afford it. There’s this pizza restaurant in the next town that I used to order a very spicey salami pizza from. The more I ate it, the more I disliked it and I couldn’t figure out why, since I thought I loved all ingredients. As it turned out though, there was anchovy on the pizza, which made it very salty. This time when the staff ordered from that restaurant, I decided to go for a regular salami pizza.

Soap Making

For the first time in a few months, I made a melt and pour soap again a few weeks ago. I based it on this recipe, though I used regular white soap base rather than honey soap base and I skipped the bee pollen. I do have honey soap base too, but the staff member I made it for wanted me to use a white soap base and I couldn’t find my goat’s milk soap base. I also mixed in some gold-colored mica, which gave the soap a creamy color. I do know hwo to make real gold-colored surfaces, but the staff didn’t want me to do this. I loved the process, though the soap didn’t turn out as great as I’d hoped. That’s why I don’t have a picture.

Learning to Use an iPhone

I finally had my first trial lesson with an iPhone three weeks ago. Blind people often need to have special instruction in using a smartphone, especially if like me they have no previous experience with it. The iPhone is more accessible than are Android phones, which is why I’m learning to use that. I managed the tapping and swiping movements surprisingly well. I will take one more trial lesson before I buy myself an iPhone and will start formal training.

An Evening at My In-Laws

Yesterday, I was home for a day. It went okay, but not great. Because my husband wasn’t sure he’d be home in time for dinner, he asked his mother if I could eat there. My mother-in-law picked me up at around 5PM and we drank some coffee and then had dinner. It was nice. My in-laws have four horses. After dinner, my mother-in-law asked me whether I wanted to pet one of the horses. She led me to a horse named Bink, who loves to be petted on the neck. I have some experience doing day activities with horses, but those were tiny ponies and this is a large horse. I was excited and a little scared at once.

Sunny Weather

The last two weeks have been great weather-wise. I have been doing lots of walking and sitting outside. Haven’t yet been in our garden at home, because yesterday I was afraid our cat would get outside and manage to get onto some roof. My husband and I did take a little tandem bike ride last week, which was fun.

What have you been enjoying lately?

A Cornish Mum

#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