All posts by Astrid

About Astrid

I am a woman in my thirties. I was born prematurely. Because of this, I live with various disabilities, including blindness and an unspecified developmental disorder. I reside in an institution in the Netherlands. I blog about mental health, autism, disability in general, faith and life in general.

My Autistic Experience: Repetitive and Steretoyped Speech and Language

I’d almost forget it, but this month, I’d actually intended to share my autistic experience for #Write31Days. I failed at the challenge, but that shouldn’t be an excuse not to share my experiences. Today, I’ll talk about speech and language.

I was originally diagnosed with Asperger’s Syndrome under DSM-IV. Asperger’s is basically autism without an intellectual disability or speech delay. The communication impairments criterion in autistic disorder does not appear in the criteria for Asperger’s. That doesn’t mean Asperger’s people don’t have communication impairments. I could’ve easily met the communication impairment criterion in autistic disorder if I’d been more articulate back when I was diagnosed in 2007. You see, I was asked to name examples of speech and language stereotypies I displayed and could come up with only one, which was dismissed. In truth though, my speech and language can be quite stereotyped.

The most noticeable form of steretoypical language for me is my use of particular words or strings of words in an apparently irrelevant context and/or in a repetitive way. For example, in around 2005, I’d say “Hey folks!” to practically everyone. Later, I also used to say “banana spider” at every opportunity. In time, between my husband and me, it got the meaning to communicate boredom or disinterest. As such, it’s become a kind of script.

My repetitive use of language can be helpful in my interactions with my fellow clients at day activities. My fellow clients are all severely intellectually, often multiply disabled. None of them can speak and many have severely limited comprehension of speech, but they respond with joy to my repetitive use of their names or nicknames in a particular tone of voice.

Speaking of tone of voice, I do not seem to have a monotonous voice, but I do know that my tone of voice can be steretoyped too. For example, I speak to each fellow client at day activities in a different tone when echoing their names.

I rarely if ever experience true echolalalia, in the sense that I’d repeat another person’s entire sentence. I do often find myself repeating one or two words though. I also regularly repeat my own words. Lastly, I do repeat sounds people make.

I have an interesting preference for complicated words over simple ones. Refer back to “banana spider” here. Also, the first word I ever spoke, at ten months of age, wasn’t “Mama” or suchlike, but “aircraft industry”.

Another interesting experience happened at my last psychological evaluation last spring. Not only did I name “Banana spider” as one of the first animals in a naming task, but on the IQ test, one of the questions was who was Mahatma Gandhi. Years back, I’d had the same question on an IQ test and accidentally said that he “fighted” for India’s independence. Now I knew I had to say he “fought”, but again, “fighted” slipped off my tongue. It isn’t that I didn’t know the past tense of “fight” in Dutch, but that the situation elicited this particular brain fart.

I’m sure most people use language in some steretypical ways. After all, the example of steretoypcal language I came up with in 2007, was my frequent use of expletives. That’s not uncommon, which may be why the assessor dismissed it. My use of repetitive language also doesn’t impair me that much and, like I said, it can be an asset. However, that doesn’t mean it’s not there.

Spectrum Sunday

#MeToo: Do My Experiences of Sexual Violation Count?

The “me too” hashtag has been floating around Facebook for a few days now. I didn’t add my “me too” myself, as I didn’t know whether my experiences counted. Also, I never told my parents even though some experiences happend when I was a child. I didn’t want to make them feel uncomfortable and I don’t want to come across like a “drama queen” who cries wolf too easily.

If you have to believe some people, any behavior from a man that makes a woman feel uncomfortable, whether the man is aware of it or not, is sexual harassment. All men are portrayed by some media responses to “me too” as potential rapists. I have to disagree here. Not because an “innocent” stare or gesture doesn’t count. It may not legally count, but to a victim in need of support, it definitely does. The reason I disagree to this logic has nothing to do with what counts and doesn’t count as sexual harassment and everything to do with the fact that men are victims too and women are perpetrators too. Focusing too much on just women as victims and men as perps, is silencing to male victims of sexual harassment/assault. It’s doing to male victims what those who made women set up “me too” do to women victims.

I happen to be a woman. For all the experiences of sexual violation I endured, the people doing it to me were male. Only one of them was a steretoypical fifty-year-old creep. The others were children or teens.

I have one experience where I was touched. The rest of my experiences involved threats and other inappropriate verbal and non-verbal communcation. The fifty-year-old creep’s actions were the most recent, when I was 23, and the ones I remember most clearly.

I have often wondered whether I can seek support for my experences of sexual violation. Because sexual violation wasn’t the worst of my traumas, I often feel left out in sexual assault survivor communities, because, well, was it “that bad”? No, in a sense, it wasn’t “that bad”. I mean, my heart goes out to the people who were actually raped or assaulted. Yet just because others have it worse, doesn’t mean my experience doesn’t count. Impact of trauma varies from individual to individual and the post-traumatic stress symptoms I endure are in fact pretty bad.

So my experiences do count, because I feel they do. Not necessarily in legal terms – I was going to write an essay on that -, but for support purposes, they do. Thanks to the author of Crazy-NOS for giving me the courage to share my experience.

Succumb

I often feel like I want to succumb. Especially in the weeks after my first overdose last July, and again now, I find a form of peace and comfort in the thought that I could do it again. Note that I don’t want to die and the fact that apparently I could have died, makes these thoughts scary at the same time. I still envision myself coming out of a possible suicide attempt alive each time. It’s really hard to imagine anything else, as, you know, when I’m dead, there’s no longer me, so nothing to imagine for me. I mean, yes, I sometimes imagine what my funeral will be like, but the very fact that I can imagine it, means I’m alive.

I rationally know, these two times that I did something that could’ve cost me my life, that quite frankly there’s nothing positive about this. I mean, at the end of the day, each time, I still returned to my life as it was before my overdose. I didn’t even want to be taken to the psych unit and there was no need for it either.

How different were these events from my major crisis of 2007? At the time, I didn’t even take any actions that could’ve cost me my life – I just threatened suicide. However, I badly wanted, needed even, to escape the life I was in at the time. This was effective, as I went into the mental hospital and didn’t leave institutional life for almost a decade. Now I’m in the community again and it’s proving hard, but I must say, not as hard as I’d expected it to be. If things had gone as I expected them to, I would’ve been in chronic crisis mode. I’m not now. I don’t make any plans to end it all. Not that I did so back then, but I did run away from my home each day for a week before I finally crashed and threatened suicide.

I don’t know what makes my current thoughts that I can, if I want to, take my life any less serious than the thoughts I had back in 2007. After all, I did have these thoughts for several months following my crisis. Still, they feel less serious now. Is it because now, I don’t dramatically over-express them (unless this blog post counts)? Is it because, other than having these thoughts and being in a pretty depressed mood, I still go about my business as usual? Then again, I did most of the things I had to in 2007 too, up to taking an exam at university three days before being hospitalized.

I think honestly, the difference is that, back then, I was over-emotional, whereas now, I am under-emotional. Back then, I experienced and expressed quite intense emotions, whereas now, if anything at all, I feel numb.

I don’t know whether this is better or worse. I have a feeling that it is less serious, as I’m not emotionally dysregulated like I was back then. I don’t go about having public screaming and crying fits. I barely go about expressing myself at all, unless again this blog post counts. I don’t go about making suicide threats to random people. I don’t even know what I want to avoid or achieve anymore. As such, I don’t make any actual suicide plans, but I don’t know whether I care if I died right now either.

This post is linked up with The Daily Post’s prompt for today: sucuumb.

Self-Destructive

So #Write31Days didn’t work out, but not because I couldn’t be motivated to write. The reason was that, on Wednesday, I landed in crisis, took an overdose of medication and had to be taken to the hospital. I spent the night on the internal medicine ward and was medically cleared the following day. However, it took till around 5PM before I could see the consulting psychiatrist. She was a nice woman. I knew her nurse from the other time I’d taken an overdose last July. Nothing much has yet been decided, as the psychiatrist will speak to my CPN on Monday, but I was cleared to go home.

Today, I want to talk about harmful and self-destructive behavior as it happens in various mental disorders. Particularly, I want to relate it to what I assume are my current diagnoses: autism spectrum disorder and borderline personality disorder. Unlike what many people believe, the reasons for harmful behaviors are not either fully due to autism or fully due to BPD.

In autism, self-injury and aggression are common, but are seen as steretypical behaviors. For example, some autistics hit themselves as a form of self-stimulation. However, there is a common behaviorist phrase that says all behavior is communication. As such, autistics often also engage in self-injurious behavior to communicate pain, overload or frustration.

Here is where the lines between autism and BPD become blurry. After all, unlike what is commonly believed, borderlines don’t self-destruct “for attention” or “to manipulate”. Most self-harm to deal with strong emotions that they perceive as overwhelming. Whether these emotions come from within the person themself (as is often the case in BPD) or from external sources of frustration, may seem to be important, but it isn’t. A situation doesn’t make you self-destruct, after all. It’s each person’s choice, within the limits of their mind’s capacity at that particular point.

The reason I took an overdose on Wednesday, isn’t fully clear to me either. I do remember feeling sensorially overloaded with cold. I tried to warm up by going on the elliptical trainer. After all, I needed my exercise too, as I hadn’t worked out all week. I couldn’t find my sneakers or my sports clothes, so I tried for a bit to work out in my regular clohes, except for my vest. I was shivering though and this overloaded me even more. From that point, I don’t rmemeber much. I was feeling rather unreal, though I must’ve had some awareness of what I was doing, as I retrieved medications from various sources. Once the first pill bottle, which was the easiest to find, was down, I didn’t feel there was a way back.

So is this typical borderline behavior? Yes, in that it’s not stereotyped and was rather purposeful. It certainly wasn’t the stereotypical “cry for help” type of BPD behavior though. I didn’t want to call the out-of-hours GP and I had zero interest in being admitted to a mental hospital. I do think I need some more guidance, but not in the sense of somemone providing me emotional nurture.

In the sense of what caused it, it’s more autistic sensory overload and difficulty handling unexpected situations and frustrations. The help I requested when talking to the consulting psychiatrist was of such nature: I need some practical guidance on getting more structure in my day and dealing with unexpected situations. It may be my home support worker could provide this, or I may need my nurse from the assertive community treatment team for this. I also remember just now having discussed with my nurse a prescription phone call. This means that you can call (usually I think a max number of times a week or month) to a psych unit for support if you’re about to go into crisis. I will ask my CPN about this.

My Experience Being on Disability Benefits #Write31Days

Welcome to day 3 in the 31 Days of Autism. Today, I want to wrote about employment or the lack thereof.

I never worked. I didn’t even have a summer job as a teen. I even only babysat for the neighbors once when my sister was ill. When I had to write a resume in college, I put the few barely-active E-mail lists I owned on it, LOL.

When I was seventeen, my parents told me I hd to apply for disability income. I was told it was just to make up for the work non-disabled college students do besides studying. This may be one reason my sister is still a bit jealous, as she never worked and hence didn’t have an income in college (other than her student loan).

I never had any trouble going on disability. I didn’t even have to meet the social security agency’s doctor or employment specialist face-to-face. It was all handled by a simple phone conversation with me and my parents and a few bits of information from my family doctor.

Note that I hadn’t been dagnosed with autism when I was first approved for disability in 2004. Once diagnosed, my support worker wrote a letter to the social security agency informing them of several things: I had been diagnosed with Asperger’s Syndrome, had dropped out of college and had been admiitted to a psychiatric hospital. I probably would’ve had to notify the social security agency that I’m no longer in a hospital, but I don’t know how to go about this.

In 2010, the law on disablity income for people who were disabled from childhood on was revised. I don’t know what was changed, but I heard that at least there was talk of not giving people disability benefits from age 18, instead moving the age threshhold to 27. I wasn’t yet 27 by that time, but maybe those already on disability were exempt. Also, those in institutions were talked of being exempt from this rule, and I obviously was.

In 2015, the Participation Act went into effect. This means people won’t get disability payments if they can do a task that is part of a job (instead of being employable in an actual job), have basic employee skills, can work for at least an hour on end and can work for at least four hours a day. In any case, it’s extremely hard to go on disability now. I was still institutionalized when I received the letter at home saying I had no employment potential. My husband jokes that the letter was full of zeros.

Before I’d received the letter, I had worried incredibly. Now that I checked an explanation of the components of employment potential, I’m worried all over again. A Dutch law firm states: “If you wash the dishes at home, you may have employment potential.” This was nuanced a bit to say that, for example, if you volunteer in a sports club cafeteria doing the washing up, this counts as a task. Interestingly though, I don’t think effectiveness or speed are counted in, but they do play a role in the one-hour and four-hour rules.

Many people I know, even those requiring a lot of support, are not approved for disability income under the Participation Act. I am just so glad I am.

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.

Autism and Friendship #Write31Days

Welcone to day one of #Write31Days for 2017. This month’s theme on my blog is autism. One of the most characteristic impairments in autism, at least according to diagnostic criteria, is an impairment in social interaction skills. In DSM-IV, the diagnostic manual under which I was originally diagnosed, failure to develop peer relationships appropriate to developmental level was one of the impairmetns under the social interaction deficits criterion. “Peer relatioships” refers mostly to friendships, though I reckon it can refer to romantic relationships in adolescents and adults too. Today, I will discuss how autism impaacts my understanding of friendship.

Many years ago, I read an article by famous autism expert Tony Attwood on the topic of development of friendship skills. A typically developing child starts to develop friendship skills at around age three. They realize that friendship requires some level of turn-taking but their approach to this is egocentric, based on for example sharing of material goods or playing together. When someone asks why a person is the child’s friend, the child at this stage would typically respond: “Because they live next door.”

Children between age three and six are typically at this level. Autistic children (and in a way even adults) typically remain at this level longer. When I was nine, for example, I’d consider someone a friend because they gave me candy. Admittedly, I’m still at this level in a way, though I realize this is inappropriate. For example, when my now husband said that he was in love with me, I wasn’t sure whether to reciprocate it, since I didn’t know whether I liked him just because he was the only one who’d visit me in the psychiatric hospital. Also, I still can’t sem to move away from materialistic aspects of friendship like sharing candy.

At around age six, typically developing children move into the next level of friendship skills, which is based on shared interests and games. When asked why someone is a child’s friend, a child at this stage would say: “Because they let me play the games I want to”, “Because they’re nice to me”, etc. I relate to this level of friendship too.

Another criterion of autism in DSM-IV was lack of social reciprocity. This means that an autistic person doesn’t understand age-appropriate rules of give-and-take. Many autistic people can come across rather self-centered. So do I. For exampel, I rarelys hared candy (here we go again!) in the institution, even thoug I did accept it from others when offered. Give-and-take, however, seems not just based on material things and there aren’t many clear-cut rules for it.

I have a rather literal interpretation of reciprocity: when my husband, for example, gives me something, be it material or immaterial, I have to give him the same back. As such I feel extremely bad about being dependent on my husband for many things, like transportation, food, etc. He says that I give him love in return, but I barely understand the concept of love.

31 Days of Autism Landing Page #Write31Days

Welcome to my #Write31Days for 2017. I’ve not written regularly on this blog, or any blog, in almost 1 1/2 years. With #Write31Days, I’m attempting to change that. For those who don’t know, I participated in this challenge in 2015 on the theme of mental health. It’s a challenge where bloggers write a post every single day for the motnth of October. As such, it’s quite a huge challenge to take on for me – going from four posts a month or so to 31. Please all send positive vibes and have your fingers and toes crossed that it’ll work out – and hopefully give me a boost to blog again more regularly for the months after October.

For this year’s theme, I have picked “autism”. I know, I chose this for the #AtoZChallenge in April and failed, but I didn’t have a diagnosis back then to give me a reason to persevere. I do now. I mean, I know self-diagnosis is valid and, besides, I was formally diagnosed three times before. I had however internalized a lot of prejudice. Since this was the main reason for my not sticking to the #AtoZChallenge, maybe #rite31Days will be more of a success. I hope so.

In 2015, I wrote mostly infmrational posts on topics related to mental health, such as personality disorders. Though I will share the odd informational post in this year’s #Write31Days, I will mostly focus on my own lived experience as an autistic person. I will mostly pick my topics from the 30 Days of Autism Acceptance challenge. There are 32 topics in the challenge, since day 9 and 10 have two topics to choose from. Since I already wrote several posts based on this challenge though, I’ll have to be a little inventive too.

This is my #Write31Days landing page, where I’ll link to each day’s post so you can easily see them in one place. Enjoy.

Blind People Should

A few years back, there was a flash blog event that had autistic bloggers all finish the sentence “Autistic people should …”. I think the reason was to counter the hurtful search suggestions that Google made when people typed in “autistic people should”. I was reminded of this event when I read this weeks #theprompt, which is “should”.

I was also reminded of my own preconceived ideas about what disabled people should. A few days ago, I wrote to a disability support group on Facebook about feeling like I was setting a bad example for the disability community because I don’t work and spent years in an instituton. Shouldn’t I have to explain why I can’t work or live fully independently? The short answer is: no.

I was feeling like I should have a disability label to justify my every need because of what I learned whilst being part of E-mail groups run by the National Federation of the Blind, one of the two major organizations of the blind in the United States. This was in the early 2000s, mostly before I’d been diagnosed with autism. What I learned was that blind people, unless they have severe additional disabilities, which I’ll address later, should be able to achieve as much as sighted people do. For example, we should be able to read at the same speed, get around with a white cane completely independently, go to college (I think I picked up the term “college-bound” there), be employable, etc. I can’t do or be any of these things. Keeping the bar of expectations high was the motto of the parents’ organization of the NFB or so it seemed. I always imagined a candy bar put up on a star light years away and me being told to reach for the stars.

Sometimes, when people judged blind children or adults they only knew through newspaper articles not to be independent enough, someone would come up with the get-out-of-jail-free pass: “Maybe the person has additional disabilities?” This is a real possibility, since strangers usualy assume my every impairment is due to blindness despite my additional disabilities, so I assume newspaper reporters are no different. Yet does it matter? Should it? Apparently, sometimes.

In an old (like, late 1990s) issue of Future Reflections, the NFB’s magazine for parents of blind children, a blind adult reported his shame when he crticized parents of blind teenagers for not taking their teens to a seminar on independence. It turned out he was speaking to a roomful of parents of teens with multiple disabilities, so obviously they couldn’t bring their teens. I assume most of these teens had the type of disability that seems to have a monopoly on the term “multiple disabilities” when additional disabilities are involved: severe intellectual disability. After all, when I played the additional disabilities card after my autism diagnosis in 2007, I was told to look up Temple Grandin.

I may sound bitter and I shouldn’t be. After all, I do get the services I need now, even though they cater to, well, people with severe intellectual disabilities. That being said, I know I’m incredibly privileged now to have found my particular care agency, because most others would try to fit me into the mentally ill mold or the blindness mold or any other not-completely-fitting mold rather than looking at my needs.

This all brings me to my point, which is that blind people, autistic people, any kind of disabled people, any kind of people in fact, should not have to justify their needs. We are all human and all different, after all.

mumturnedmom

Book Review: Cruel to Be Kind by Cathy Glass

A few weeks ago, I found out about a new Cathy Glass book on an E-mail list I’m part of. Most of the members of the list are big Cathy Glass fans, but I’d never read a book by her. I badly wanted to. Cruel to Be Kind is Glass’ latest foster care memoir. I finished reading it on Saturday. Here is my review. It contains slight spoilers.

Synopsis

Cruel To Be Kind is the true story of Max, aged 6. He is fostered by Cathy while his mother is in hospital with complications from type 2 diabetes. Fostering Max gets off to a bad start when his mother, Caz, complains and threatens Cathy even before Max has moved in. Cathy and her family are shocked when they first meet Max. But his social worker isn’t the only one in denial; his whole family are too.

My Review

It wasn’t clear to me from the synopsis what it is that shocks Cathy about Max. I need to disclose it to make this review at all meaningful, hence my spoiler alert. The shocking fact is that Max is morbidly obese. Whether childhood obesity is a form of child abuse, is a controversial issue at least in the Netherlands. As an obese person myself, I was at first a little like “What’s the problem?”. Clearly this is me still not being fully accepting of the health risks of my own obesity. Max though is not just obese – he weighs twice as much as he should at his young age.

As is said in the synopsis, Max’s family and social worker are in denial. His mother and sisters are all morbidly obese too and, even though Max’s mother Caz has type 2 diabetes, she at first refuses to admit Max needs to lose weight.

I at first thought this would be a rather boring story, but it isn’t. In fact, it has many layers. I really got to know Max, Caz and Max’s sisters as they struggle with the generational curse of child abuse and domestic violence. I loved how Cathy attempts to portray most people she interacted with as humans with their strengths and weaknesses. For example, at first Caz was portrayed like a demanding, hostile feeder. In the end, she warms up to Cathy and discloses the dark secrets behind her overeating.

Overall, I really liked this book and it totally has me hungry for similar books. The only thing I really didn’t like about the book, is its title. Max at the end uses the phrase that you have to be cruel to be kind sometimes as an expression of gratitude for Cathy’s having put him on a diet. This phrase and the use of the words “tough love” in the same statement, did trigger me a bit.

Book Details

Title: Cruel to Be Kind: Saying No Can Save a Child’s Life
Author: Cathy Glass
Publisher: HarperCollins Publishers
Publication Date: September 2017

Read With Me