Working On Us Prompt: ADHD

It is Wednesday and that means Beckie has launched another topic in the Working On Us Series. I badly wanted to participate last week, when the topic was (complex) PTSD. However, I felt too low on energy then. This week, the topic is ADHD.

I was never diagnosed with ADHD, so in this sense I have little to add here. I, however, do experience many symptoms that could be signs of particularly inattentive-type ADHD. They overlap a lot with autistic symptoms though, which I do have a diagnosis of. At this point, I don’t think it’s necessary for me to get an official ADHD assessment. Most groups for adult ADHD/ADD welcome self-diagnosed individuals and those who are questioning, like me.

Symptoms I relate to include restlessness, both physically and mentally. I’m not necessarily hyperactive in that I blurt out random things, but I do fidget like all the time and my mind is usually racing. That is, it is either racing or completely shut off, like when I’m low on energy.

The same really goes for impulsiveness: I’m not impulsive in the typical way, but I am in less typical ways. For example, every need feels urgent to me. This applies to basic human needs like eating – when I feel hungry, it feels as though I’m literally starving -, but also to other wants and needs. This could be related to autistic sensory processing issues, but I believe it’s more than this, especially since it doesn’t just apply to sensory or bodily needs.

As for inattentiveness, I can’t usually pay attention to something unless it really interests me, in which case I hyperfocus and become totally absorbed to the exclusion of other activities. I know this is an ADHD trait, but it is also common in autistics and I’ve always wondered whether everyone doesn’t have this issue to an extent.

Lastly, my executive functions seem to suck. My memory for random words or digits is about average and used to be above-average, but for everyday life experiences (particularly others’ experiences) and daily tasks, it’s pretty bad. I was told when I did a behavioral memory test (where you have to retell a short newspaper story) as part of my autism assessment, that my memory is detail-oriented.

With respect to planning and organizing tasks, I suck at those and always have. I used to do pretty well when faced with a deadline, but even then I struggled to organize tasks. I recently read that ADHD children often learn to do tasks on high adrenaline. The reason is often that neurotypical adults assume that, if a child is capable of something relatively difficult once, they must be able to do it all the time and must be able to do all assumed-to-be-easier tasks in that category. For this reason, neurotypical adults often force ADHD children into doing tasks they cannot yet do, assuming they can, and as such cause the child high anxiety. This causes an adrenaline rush, which temporarily increases the child’s ability to perform.

When I read this conversation on Facebook (it was originally posted to Tumblr but I don’t know where), so many bells rang in my head. Like many people referred to in this conversation, I can sometimes do seemingly more complex tasks while not being able to do simpler tasks in that same category. I am also very inconsistent in my abilities, usually being able to perform a task under pressure better, but with less pleasure. For clarity’s sake, this conversation was meant to explain the harmful effects of forcing children to do tasks they feel they are not capable of.

Since I do not have an ADHD diagnosis, I’ve not had any treatment specific to it. I’m also not on ADHD medication. I, however, find that some coping strategies that work for ADHD individuals, do work for me.

Why I Am in Long-Term Care

The day 1 prompt for this year’s 31-day writing challenge is “Why”. I immediately thought of the question that keeps popping up in my mind whenever I meet someone new at the care facility: Why am I in long-term care? Today, for example, I met a student doctor who was touring our home. I informed her midway through our conversation that I don’t have an intellectual disability, to which she replied that she could tell. Well, duh! Even when I’m overloaded, like I was at the time, and experiencing pretty bad language problems, I still sound like someone with at least an average IQ.

So why am I in long-term care? To a casual stranger, I could just point to my lack of sight and they’d be satisfied. Not a doctor or even a medical student, I guess. The medical advisor for the funding agency understandably concluded that blindness alone doesn’t warrant 24-hour care. Neither does mild cerebral palsy. And, as regular readers of this blog know, autism, being seen as a psychiatric condition, doesn’t count.

They finally found a way around this situation by saying that my disabilities are intertwined. They are, of course. In multiple disabilities, the whole is more than the sum of its parts. For this reason, the short answer to why I’m in long-term care is because I’m blind and autistic and have mild CP, not because I have any of these alone.

This is the legal answer. The way the funding agency found around the stupidly close-minded look at disabilities the law requires medical advisors to have. The long answer is, of course, that my individual care needs mean I need 24-hour proximity of care.

I have significant executive functioning issues. These cannot be objectified by tests because I’m blind and the tests of executive functioning that are available, are all visual. For this reason, the medical advisor wrongly concluded that I don’t have cognitive impairments. I don’t have an intellectual disability, but that’s not the same.

These executive functioning difficulties make it hard for me to take care of myself. I can do basic self-care activities with reminders and prompting, but then still I often mess up.

People, including my support staff, have used my blindness as an excuse for my difficulty with basic self-care. Of course I can’t see when my clothes are dirty, but if I were just blind, I would be able to prevent the most common causes of my clothes getting dirty. Like, I would be able to prevent myself from drooling over them, or I would be able to find other ways around it.

People also use my blindness as an excuse for my needing proximity of care. If I were just blind though, I would still struggle to know when staff had left the room, but I wouldn’t feel overwhelmed by it.

But I’m not just blind. Had I been just blind, I wouldn’t have needed to apply for long-term care. And yet, paradoxically, my care ground is blindness.

The Daily Four (August 26, 2019)

Over at A Guy Called Bloke, there’s a new meme called The Daily Four. I found the questions very inspiring, so I’m participating today.

What was the worst thing you did as a child?
I wasn’t a very naughty child, but my parents claim I terrorized the family. Being autistic, I’ve done a lot of destructive things during meltdowns. I ran away quite often and, according to my mother, was physically aggressive towards her as a teen. One day in particular, I remember ruining my sister’s birthday party (I think it was her 10th birthday) with my meltdown.

Growing up, what was your ideal dream job and did you bring that to a reality at all?
I’ve always wanted to be a writer. Though I only had one piece published in an anthology, I am pretty sure that blogging is a dream come true. I always thought that, like Anne Frank, I’d have my diary published someday. I guess I didn’t realize how unimportant my life is compared to hers.

What were the things you both liked and hated about your schooling?
I was often bored at school during my years in special education, but I liked it there nonetheless. At least I had friends, something I cannot say of my time at grammar school. What I most hated though, was the loyalty conflict I had, because my parents were in constant fights with my school over my needs.

Where there is a will, there is a way! Do you agree?
Yes, usually. Some dreams are unrealistic, but there’s always a way to come close. For example, of course, I will never be a plane pilot, being blind, but if I wanted to, I could arrange to see the inside of an airplane. In fact, I did at age twelve.

Working On Us Prompt: Self-Care and Personal Hygiene

This week’s prompt on Working On Us is about self-care. I initially thought of self-care as those things we do to pamper ourselves, but then when I read the questions, I realized Beckie means basic self-care. You know, personal hygiene, such as showering or brushing your teeth.

I definitely have always had trouble with this. Part of it may be due to my lack of awareness of my appearance, which may be due to both blindness and autism. However, the fact that I don’t always shower or brush my teeth regularly, certainly isn’t.

I have always had trouble with proper personal care. When I was about fourteen, my high school tutor got complaints from my classmates that I smelled a lot of body odor. He told me I really had to develop a personal hygiene routine, but didn’t explain how to go about it. He was my PE teacher and said that he personally showerd twice a day. So I initially thought I had to do that as well, so the next day, I jumped in the bath at 6AM. My parents were not amused. With my parents, I finally agreed on a routine of baths or showers three days a week, on Sunday, Tuesday and Thursday evenings. That way, if I went to school, it’d never be more than 48 hours since I’d had a shower or bath.

My parents still didn’t explain how to wash myself. Honestly, now that I’m 33, I still get told by my husband at times that I don’t do it properly.

The problem of course wasn’t just that my parents didn’t teach me. After all, presumably my sister knows all about hygiene. It was also that I had an aversion against personal hygiene activities. Here is where my mental health is involved. Like, I have executive functioning issues on the best of days, making a “simple” shower very difficult. When I’m depressed, I cannot cope with the stress of having to shower.

My lack of self-care wasn’t even picked on when I was first assessed by a psychiatrist. Maybe he did notice I smelled, or maybe that particular day my body odor wasn’t too bad or I’d had a shower. If he did notice, he didn’t tell me so or write it in the report. Neither did any of the next so many psychiatrists and psychologists I had. I only found out that my psychologist at the resocialization unit in Nijmegen had noticed because it was written in my long-term care application at the time, that I didn’t get to see until we applied again last year.

As for brushing my teeth, I hated toothpaste. I still do, but at age 18, finally forced myself to use it. I never brushed my teeth properly until I got an electric toothbrush for my birthday this year. Now I’m still not sure I do it right, but I at least brush for the required two minutes. Interestingly, the elctric toothbrush is less horrible sensorially than the handheld one.

I find it interesting that, though lack of personal hygiene is part of an assessment of mental functioning, so few mental health practitioners take the time to discuss it with their patients. Like, when I was in the mental hospital, no-one offered to teach me personal hygiene. Not even when the dentist recommended I get help brushing my teeth. They said it was my responsibility. I really hope that, when I’m in a care facility for people with developmental disabilities, that will change.

Working On Us Prompt: Coping With Crisis

Today, I’m once again joining in with Beckie’s Working On Us Prompt. This week, the topic is to write a narrative of what works for you when facing a panic or anxiety attack, manic episode or other crisis. I don’t get panic or anxiety attacks much or mania at all, so I’m going to describe what works for me when I’m in an emotionally dysregulated crisis.

Like I’ve said before, I have BPD (traits). These are also known as emotion regulation issues. I also experience complex PTSD symptoms. Both can cause me to suffer emotional outbursts. In addition, I can get severely overloaded due to my autism. This can cause me meltdowns, which in some ways are similar to BPD outbursts. In fact, I’m not 100% sure my BPD diagnosis is correct given that autistics, particularly women, are often misdiagnosed as BPD.

Anyway, I usually notice an outburst coming on when I experience an increase in sensory reactivity. I also often start to experience a decrease in my language abilities. I start to stutter or can only make humming noises and repeat the same phrases. My staff at day activities say that when in this state, my communication abilities resemble those of a toddler. It is interesting, in that we have only one toddler alter. When I can’t do something to calm down, I may progress to a full-blown state of meltdown, in which I become angry and sometimes aggressive or self-injurious.

What helps me when I’m in such a state, is to physicaly remove myself from the situation. This is hard though, as often it feels as though everything that happens around me is important. Usually, my staff help me by clarifying what’s important and what is not.

Of course, now that I still live independently, I don’t always have a staff member available to help me sort through a crisis or make suggestions on how I can cope. I, however, have a phone number of a psych hospital I can call in a state when I’m close to a crisis. They can’t do much but listen to me and try to offer advice, but it’s definitely been helpful in some situations. The mental health team that treats me also has a staff available on the phone for crisis intervention during office hours.

Sometimes, when I’m in a really bad crisis, I take my PRN lorazepam. However, I have some experience with it being overused on me in the psych hospital. Like, whenever I’d react to a sound in an irritated tone of voice, staff would tell me to take a lorazepam rather than helping me to figure out what was causing me overload. This has really gotten me weary of PRN medication.

Autistic Pride Day 2019: Reasons I’m Proud of Myself

It’s June 18, which means it’s Autistic Pride Day. I have known this for years, but didn’t realize it today until I saw another blogger share about it just about an hour ago. I don’t really know what to write about for today. I could list positive traits of autism, but others have probably already shared those. Besides, I don’t pride myself on my autism, despite not seeing it as a negative thing. I am proud of myself just for who I am. For this reason, I am going to list some reasons I’m proud of myself. Autism, after all, is part of who I am.

1. I am self-aware. I had a meeting today with a care consultant for a possible living facility for me. I was quite able to articulate my needs and strengths. I am increasingly aware of those.

2. I am resilient. Some people don’t think so, as I’ve had multiple mental health crises. However, I always veer back up.

3. I am determined. I don’t let others tell me what’s best for me. Again, this isn’t always seen as a positive characteristic, but so what? I think these people are just trying to get me to be submissive to their ideas of what I should be.

4. I am honest. I can be blunt, but I always speak my mind.

5. I am open to new experiences. This may contradict some common autism stereotypes. In fact, when I first heard of autism, it was explained to me as “being afraid of new things”. I am not.

6. I am affectionate. I do display affection in my own, autistic way, but I can definitely show love and affection for my husband and others I care about.

7. I am creative. Not in the sense that I can tell imaginative stories – my fiction has a horrible lack of imaginativeness to it -, but I think outside of the box.

8. I can be focused. That is, if something grabs my attention, I can completely hyperfocus on it. This can be a negative characteristic, but it definitely helped me during my school years and helps me focus on what I like now.

What are some reasons you are proud of yourself?

Confessions of a New Mummy

Socially Awkward #SoCS

I am socially awkward. Before I was diagnosed with autism, this was how I saw myself. I even had an E-mail group on Yahoo! Groups titled socially_awkward. This was for adults and teens with social issues of any kind.

Indeed, the main symptom of autism is still seen as social communicative difficulties. I do have them, mind you, but I don’t see them as my main symptom of autism. My main symptom is overload, both cognitive and sensory.

Then again, like I said, I do have issues with social interaction. I haven’t had a friend other than my husband since special education junior high in 1999. I tended often to be too clingy. In this sense, I guess I exhibited the “acctive but odd” style of social interaction that is often exhibited by males on the autism spectrum and is seen as the least impaired style, common in those diagnosed with Asperger’s Syndrome. Yet I do experience severe impairments in other areas.

When I was older, I tended to exhibit a more passive interaction style. Then again, when at meetings, I can still be dominating. This is probably why the people in the Dutch DID group decided I wasn’t safe. They kicked me out, officially because they believed I didn’t have DID or had imagined it, but they cited as reasons for this that I talked bookish about my issues. Well duh, that’s typical of autistic active-but-odd interaction.

But back to how mild or severe my autism is in terms of social interaction or other symptoms. I was diagnosed as ASD level 1 under DSM-5, so the mildest severity level. The reason is probably that I can hold down relatively normal-sounding conversations in structured settings and with people of my intelligence level. At least if they’re focused on me, which diagnostic interviews usually are. I cannot keep up a conversation about someone else for long. This may be why some people, including my parents, used to see me as selfish. I tend to want to dominate or talk about myself. That is, I don’t really want to, but it is the most natural.

In the second symptom category of autism, which is restricted and repetitive behaviors, I was also diagnosed as level 1. I disagree, particularly because sensory issues have been added to the criteria and I’m severely impaired with regard to that. I stim all the freakin’ time, for example. I feel I should definitely be level 2 on this symptom category.

This post is part of #SoCS, for which the prompt this week is “social”.

Fairy

Fairy. I have always identified with this word. Or elf. Or changeling. The mythology of fairies taking human children and replacing them with one of their own, a changeling, has always spoken to me. It is a common early explanation of autism in the centuries prior to Leo Kanner and Hans Asperger. Obviously, I don’t agree with this, but I do understand it.

When Elena, one of my most spiritual alters, first emerged, she didn’t see herself as entirely human. She was the first to claim a fairy, elf or changeling identity. ChangelingGirl is one of my most commonly-used nicknames on bulletin boards.

I still like the idea that I have some spiritual aspect to myself. I don’t fully believe in Indigo children or the like. Besides, the theory of Indigo children is rooted in racism, usually favoring White children over those of color. However, somehow, there is some appeal to it. I do believe everyone has some spiritual aspect to them though.

When the body was a teen and Elena was most prominent, we had these weird superstitious rituals. We would’ve been open to pendulums and the like if we’d known about them at the time. More recently, when we did know about alternative stuff like this, I’ve tried to explore the tarot. I have several tarot apps on my phone. Of course, they’re marketed as for entertainment only. I like to use them to inspire my self-reflection. I don’t care that there’s no scientific proof.

This stream-of-consciousness piece was inspired by today’s word of the day challenge.

I Got Approved for Long-Term Care!

Last Monday, I was so discouraged that I wrote a letter to myself motivating myself to keep going at least till 2021. I was in the process of applying for long-term care and I wasn’t expecting my funding to be approved until 2021. After all, my original application early this year had been denied. My support coordinator appealed for me, but I wasn’t expecting much out of it. The reason I had my hopes focused on 2021 is that by then, mental illness will no longer be excluded as a ground for long-term care, meaning that those with lifelong mental health conditions preventing them from living independently, will qualify.

Of course, I’m not just mentally ill, even if you see autism as a mental health issue (which it isn’t in my opinion). I am blind and have mild cerebral palsy too. I met some people at the CP conference who qualify for long-term care for just CP, even if it’s as mild as mine is. Then again, the rules have gotten stricter and those who lived in group homes or supported housing prior to 2015, qualify much more easily than those who didn’t, like myself. In this sense, my long psychiatric hospitalization works against me.

Two weeks ago, the lawyer in charge of my appeal with the funding agency (I didn’t have my own lawyer) said I probably didn’t qualify for long-term care. The reasons were complicated. From one person, I heard that the physician in charge of making medical recommendations was willing to recommend long-term care but was restricted by law because of my history of mental illness. From another, I heard that I couldn’t get long-term care because the physician couldn’t decide whether my primary disability is blindness, cerebral palsy or autism, so they decided not to qualify me at all. That’s rather weird, because they almost made it look like I would qualify with my exact limitations if only I didn’t have a psychiatric diagnosis on file.

I don’t know how they eventually managed to do it, but late Tuesday afternoon, the lawyer called my support coordinator to inform her I had been approved after all. I am so happy! I qualify based on blindness as my primary disability.

Now I feel weird. I know I should be happy and I am, but I feel also disconnected from myself. In a way, being approved for long-term care is an ending, in that I’ll (unless the laws change) never have to prove that I need 24-hour care again. On the other hand, it’s a beginning, enabling me to start looking for a group home. Because I qualify based on blindness, we may or may not be able to get me into a group home with my current care agency. After all, they primarily serve those with intellecctual disabilities. I prefer this agency though, so we may be looking into tweaking my care profile. If I can’t live with this agency, we’ll check out the two blindness agencies here in the Netherlands. One has housing about an hour’s drive from my current home, while the other agency’s housing is 90 minutes to two hours away. My husband said though to prioritize suitability of the group home rather than proximity to our current home.

I feel pretty distressed about telling my parents. They will be visiting me for my birthday at the end of the month, but I don’t know how far things will have moved along then. I don’t really know when to tell them. It’s okay though, I tell myself. I don’t need their approval.

Silence #SoCS

#SoCS Badge

I read Linda’s prompt for Stream of Consciousness Saturday (#SoCS) almost every week, but I’m not often inspired to write something for the topic. Today though, the theme is “silence/silent” and I was immediately reminded of something. As a teen, I would often go silent or “locked up inside”. I couldn’t speak. This would last for minutes to sometimes an hour. It was related to stress. I would often fall silent when talking to my tutor. He was a kind man, but he acted more like a counselor than a teacher and I couldn’t cope with his questions.

At one point, this tutor had decided he could no longer help me and he was looking for a psychologist to refer me to. He said this shrink would have to be very intelligent, because so was I. He added that he felt I was manipulating with my silence. Well I wasn’t. I was scared.

I learned when I was around seventeen about selective mutism. This is a condition that’s related to social anxiety, in which children (usually preschoolers or a little older) can speak, but won’t in certain situations, such as at school. The diagnosis is not to be made in a person who has autism, unless it is very clear that the symptoms are not merely due to autism. I was at the time not diagnosed with autism, though I was self-diagnosed. I joined support groups for parents of kids with selective mutism anyway. That’s where I learned the expression “locked up inside”.

I rarely have nonverbal episodes like this now, but I still do on occasion. Usually in this situation, a younger part is trying to come forward. I can often hear chatter in my head, but it somehow won’t cross my lips.

This situation is different from going “blank” inside, when I can still function but seem not to have any thoughts in my mind, or am detached from them. These moments usually are a lot briefer, lasting from seconds to minutes. They are also related to dissociation, like “zoning out” or something.

The tutor who witnessed most of my nonverbal episodes, indeed eventually referred me to a psychologist with the blindness rehabilitation center. Said psychologist had been educated in the Rogerian school, which is not really suited if the client is nonverbal for the most part, as I was at the time, at leasst in session. I continued to experience these nonverbal episodes for years when seeking mental health help. Now I am thankful I can sometimes talk openly in session. Not always or often, but sometimes.

It helps that my nurse practitioner asks the right questions. He phoned me yesterday for a check-in. He asked directly about possible suicidal thoughts, so I was able to be honest and say I had them, but not as badly as I’d expected given the latest in my long-term care application. I’m mostly glad I have him.