Being God’s Beloved Child As an Enneagram Type Four

Today, I read some about the Enneagram again. As regular readers of this blog will know, I’m a type Four. Type Fours’ core motivation is to be fully understood as their unique and authentic selves. As such, Fours often focus on their being different from other people in some fundamental way. I am no different (pun intended) in this respect.

When I was in the early days of my psych hospital stay, my parents came to talk to the psychiatrist. They told him that, ever since I’d realized I am different because of my blindness at roughly age seven, I had tried to make it look like I was different in a ton of other ways. For instance, I identified as autistic (with which I was eventually diagnosed), thought as a teen that I was a lesbian (I am not), etc. Indeed, identity confusion was quite a common experience for me. According to my parents, this was all because I refused to accept the fact that I am blind, rather than because, well, I felt different in some rather interesting, somewhat impalpable ways.

Today, as I read the Day 1 section of The Enneagram Type 4 by Beth McCord, I realized I’ve always focused my attention on how I am not just essentially different from everyone else, but in some fundamental way more defective than everyone else. In reality, this is not true.

I am reminded in this respect of a sermon or something I once heard about a king having two daughters who both got lost in a shipwreck and stranded with farmers or something. Years later, the king found out that his daughters were still alive and he sent out some men to track them down. One daughter believed she was the king’s daughter, while the other didn’t. To whom does it matter? Of course, to the one who believes. This is probably what it is like to be a child of God: we are all children of God, but only those who believe it will delight in His kingdom. I find this comforting to my non-believer friends, realizing that God does not somehow condemn those people or something. Of course, there is the difference that God is all-knowing and all-powerful, so He could’ve made everyone believe.

However, my point is that there is nothing that makes me less of a child of God because of who I am or what I do. I am also not more defective than anyone else based on any of my differences, be it my autism or my blindness or whatever. Neurodiversity and disability rights are clear on that. No matter how fundamentally different I feel as an enneagram type Four, or as an autistic, multiply-disabled trauma survivor, or as just plain ol’ me, I am still God’s beloved child and I do not need to – cannot even – attempt to earn that status any more. After all, Jesus Christ purchased that status for me on the cross.

I am linking this post up with Inspire Me Monday.

Autism and Aggression: An Autistic Adult’s Perspective

April was Autism Awareness Month. In previous years, I have dedicated my #AtoZChallenge to autism, but this year, I chose a different topic. For a while, I had it in mind to focus on developmental disabilities in general, but, as you can see, I chose another topic entirely. However, the topic of autism is still on my mind. In the coming weeks, I want to offer more of an insider’s perspective on autism and its characteristics. After all, I am autistic and I feel that the blog coverage on autism is heavily divided between parents of autistic children sharing their stories and adult autistics sharing advocacy. Now there’s nothing wrong with advocacy – I feel passionate about it too -, but there is also nothing wrong with personal experience stories. What is wrong is when these are mostly one-sidedly coming from neurotypical (non-autistic) parents of autistic children. Hence, my insider’s perspective.

For my first post, I am choosing a rather controversial topic: aggression. When parents talk about their child with autism, one of the first things they will usually mention is the child’s aggressive behavior. And in fact, this was the first thing my parents would say when asked to describe my problem behaviors too. It was also what got me to be referred to the mental health agency for an evaluation at age 20, which ultimately led to my autism diagnosis.

I don’t know about statistics of aggression in general, but it is highly stereotypical to equate autism with violent behavior. Autistics are not more likely to be deliberately violent than neurotypicals and they are, in fact, more likely to fall victim to violent crimes.

That doesn’t mean aggression doesn’t occur and, when it does, that it isn’t related to the autistic person’s autism. To say that it’s a “comorbidity” is, in my opinion, doing the autistic a disservice. It is, however, an issue that arises in the interaction between the autistic person and a highly autism-unfriendly world. After all, at least I have often gotten aggressive when my needs for autism-supportive care are not met.

For instance, one day in the psych hospital, a nurse, whom I will call Sara, had said one evening that she’d get back to me the following day after morning report to talk about getting me unsupervised off-ward privileges. The next day, I went up to Sara, but wasn’t able to communicate clearly what I wanted. “I’m not your assigned nurse today,” Sara said. “Go to Daisy if you want something.” Now the nurse I’ll call Daisy was a temp worker, so clueless about my needs or what I’d talked to Sara about the previous day. I got very irritable, because Sara had promised me she’d get back to me and now she was referring me to Daisy. I screamed, walked around the ward restlessly and constantly nagged the staff in an irritable voice. By handover, a third nurse, whom I’ll call Robert, came on and said that he’d put me in seclusion if I didn’t calm down right away. “Go on then, stupid,” I shouted. So he did.

This was not my worst incident of aggression ever. As a teen, my mother reports, I would hit her. I currently still occasionally slap or push staff. Usually, this again results from staff not following through on something or not following my daily routine.

I feel strongly that, though not all incidents of aggression can be prevented by parents or carers providing autism-sensitive support, a lot of them can. If an autistic is aggressive anyway, there are much better ways of handling it than solitary confinement.

loopyloulaura

Also linking up with #PoCoLo.

Mental Health and Creativity #AtoZChallenge

Hi everyone. For my letter M post in the #AtoZChallenge, I’d like to talk about mental health as it affects my creativity and vice versa. There’s a common stereotype, and it isn’t entirely untrue or so I’ve heard, that people with severe mental illness are also often particularly creative. At the same time, autistics are commonly thought of as especially unimaginative. Now I indeed don’t have the most vivid imagination, but I wouldn’t say I have aphantasia (the inability to form mental images) either. I wish I were more imaginative and able to create things in my mind’s eye than I am though.

Anyway, my mental health is interconnected to my creativity in that, when I am depressed, I cannot usually put the effort into doing anything creative. For years while in the mental hospital, I struggled to write even one blog post a week. Now that I’m more stable, I at least find myself able to write almost daily. Still, I notice that my crafting ebbs and flows with my mood.

I also experience a huge flow of ideas sometimes, but am not always able to put them into action. For example, I have been wanting to craft a polymer clay squirrel for weeks and did indeed mix the colors I wanted to use for it, but I haven’t actually gotten down to starting on the sculpture itself.

Due to my autistic obsessiveness, I can perseverate about a particular aspect of my craft for a while, then lose interest completely. Some autistics have special interests that last for years or even a lifetime. I don’t. In my case, I am really lucky that I still enjoy polymer clay pretty much everyday nine months after having started the hobby. I do tend to change which aspect of it I’m most interested in though. Right now, of course, it’s mixing colors.

My creativity impacts my mental health in a positive way, in that I find in it a means of distracting myself from my anxious or depressing thoughts. When I accomplish something in the area of my creativity, it is a true mood booster. Conversely, of course, when I experience frustration while crafting, it can have a negative effect on my mental health.

#WeekendCoffeeShare (April 2, 2022)

Hi everyone on this cold Saturday evening. I am joining #WeekendCoffeeShare today. I’m afraid I just have water or maybe the staff has put some soft drinks in the fridge by now. My favorite soft drink, Dubbelfrisss, wasn’t cold when I had my evening drink about an hour ago. Anyway, let’s have a chat.

If we were having coffee, I’d tell you that I finally have been crafting again today after a week of just watching crafty videos and doing nothing creative at all. That is, I’ve been blogging, which counts too, of course, but I haven’t touched my polymer clay or jewelry-making supplies or macrame cords or anything.

Today, I finally did a couple of pieces for the mobile for the baby my sister is expecting. I also finished the polymer clay hedgehog I’d started on about a month ago. At first, I was disappointed, because I’d used up all of a particular color for its body and now it was nowhere to be found, so I couldn’t do the ears in the same color. Turns out real hedgehogs also have slightly differently colored ears than their bodies. Besides, I never really meant to be doing a fully realistic sculpture anyway (I can’t).

If we were having coffee, I’d share that the rest of the week was quite meh. I’ve been having tons of plans in my head, but no ability to actually put them into action. Today, I also experienced a ton of flashbacks and internal chaos. Seriously, the discrepancy between my intellectual ability and my emotional immaturity is really getting at me. I find that I can intellectually think of a lot of things that emotionally I cannot handle at all. I’m not sure if this makes sense.

If we were having coffee, I’d tell you that I may want to research an autism support method by Colette de Bruin. My assigned home support staff pointed it out to me and said she’s pretty much using the method on me already, but I may benefit from learning about it myself.

If we were having coffee, I’d share that I am very happy with the latest iOS update. I finally was able to do some reading again on my iPhone yesterday, since the update fixed a bug that caused my Braille display to become pretty unresponsive. I usually read with just my Braille display, as I don’t like VoiceOver’s synthetic speech for that.

If we were having coffee, lastly I’d tell you that I have a quiet weekend, because my husband isn’t coming over and I have no other plans. Next week though is going to be busy, especially the weekend. I am going to the nationwide cerebral palsy day with my mother-in-law. I will be attending a workshop on aging with CP in the morning, which I am really looking forward to. In the afternoon, I’ll be attending a yoga class. I may not be able to write a coffee share post then, especially since I’m also supposed to stay up-to-date with the #AtoZChallenge. I’ll be certain to write about it though.

How have you been?

Sunday Ramble: Motivation and Positivity

Hi everyone! I’m feeling full of ideas today, but none make it out of my head and into my hands. I’m talking both crafting and blogging here. Thankfully, with respect to blogging, I can always count on some great bloggers to provide me with prompts. Today, I’m participating once again in E.M.’s Sunday Ramble. This week the topic is positivity. Here goes.

1. What are the greatest attributes about you that make you feel good about yourself?
First up is, of course, my creativity! Many years ago, I would have said my intelligence, but I don’t really value that as much anymore. I do still consider it an asset that I’m a quick learner, but it’s not like I feel particularly good about being intelligent. It does make me feel good that I have many interests and I do consider that both related to my creativity and my intellectual ability.

2. What is/are your biggest motivation/s to get things done?
I find that I’m very much driven by an internal sense of motivation that comes in spurts and then goes away completely again. I’m not really sure what motivates me to do things I’d not otherwise be motivated for, other than maybe a kick in the butt from my staff.

3. Do you have any tips that could help others with their own motivation?
No, not really. I mean, other than getting treatment for obvious mental health problems that stand in the way of motivation, such as depression and anxiety. It may also help, if like me you’re neurodivergent (autistic, ADHD, etc.), to ask for help with step-by-step instructions on daily life tasks. There are groups for this on Facebook, such as Neurodivergent Cleaning Crew (I’m not a member of that one as I don’t do my own cleaning). That still may not help with actual motivation though.

4. As you are sitting there reading this question, look around you. What item in your home/work/car (wherever you are) made you smile when you looked at it?
I cannot actually look at it, being that I’m blind, and I cannot touch it from where I’m sitting at my desk, but my bed with all my stuffed animals and the satin duvet cover and pillow case that I got from a staff definitely makes me smile! I just had to leave my desk to take a picture (of course I did arrange the stuffed animals for it!).

5. What always makes you laugh and smile in your life?
My husband’s jokes! He has the funniest sense of humor.

How about you? What always makes you laugh and smile?

Unconsciously Incompetent #SoCS

When I was in college studying applied psychology (it was really an orientation year to Bachelor’s of social work or related fields), my tutor had an interesting theory about how we learn by first being unconsciously incompetent. Then we move on to being consciously incompetent, by which she meant we are aware of our lack of knowledge and skill. Then, after years of college, we move on to being consciously competent. Once being experienced in the workforce, we then become unconsciously competent, which means we no longer need to be aware of our competence, since it’s become muscle memory.

I reached the stage of conscious incompetence when my tutor told me flat out that she was passing me for communication skills only if I promised never to enter the field of social work, psychology or any related field of study or work again. Thankfully, I was aware that my communication skills exam had really gone badly just before she told me, so I didn’t just need to be dragged into conscious incompetence.

I think I might need a similar experience with macrame. I started practising on Thursday and, though I managed the square knot, spiral knot and lark’s head knot quite easily eventually, I am pretty sure I’m still unconsciously incompetent. In other words, my work is horribly ugly but I think it will do.

The only thing is, because I sort of know I might never reach the stage of even conscious competence, I am too scared to show my work online for judgment. After all, as much as I am self-conscious about it, I also would really like this to work out!

Similarly, though I knew before that horribly messed-up communication skills exam at least on some subconscious level that I’m not suited to become a social worker or psychologist, I wanted to be one. That’s probably why I went into linguistics, which, though it isn’t necessarily within the helping profession, is still a communicative field of study. I only went into it to have a student psychologist tell a newspaper that “a blind autistic who wants to study something communicative” is going to have a pretty hard time of it, when they were promoting their autism buddy program. That pretty much sent me into conscious incompetence as soon as I read it, which thankfully was six weeks into the academic year. I guess that’s what happened the time the first person to comment on my question about macrame told me it would be really hard too. Only that’s before I’d started. I’m not sure that’s conscious incompetence though. It looks rather like low self-esteem.

This post was written for Stream of Consciousness Saturday, with the prompt of a word containing “Comp”.

Poem: Locked Up Inside

In my bubble
I sit
Staring out
At the world
Outside

From around me
I hear
People talking
To me
But I can’t respond

Through the invisible wall
I try
To reach out
To someone
But I can’t

A tight grip
Of panic
envelops me
Because I know
I’m locked up inside


I have had the concept of being “locked up inside” in my head for a few days now. I first came across the phrase in an E-mail support group for parents of children with selective mutism, a disorder in which a child is unable to speak in certain situations due to intense social anxiety. I have never had this diagnosis, but as a teen and young adult, did experience periods of mutism due to anxiety and dissociative freeze responses. I use the term “locked up inside” for a feeling of intense anxiety which causes a freeze response that leads to an inability to speak and sometimes move. The feeling of being “locked up inside” is particularly frequent and intense lately.

I am linking this poem to dVerse’s Open Link Night.

Autism Diagnosis and Rediagnosis: Do Labels Matter?

Earlier today, I saw a blog post about adjusting to a late autism diagnosis. The author didn’t receive her diagnosis till her mature years, while I was 20 when first diagnosed as autistic. Still, I could relate to some of the things she discusses.

Particularly, I related to the fact that diagnosis changed my perspective in quite a radical way. I was no longer just a bad, difficult person. I was autistic. Always had been.

As regular readers of my blog might know, I have had multiple autism assessments since my first diagnosis in 2007. The reason for this is complicated and mostly related to the fact that professionals kept questioning my diagnosis and wanting further testing. At one point, the records of my most extensive assessment disappeared due to a change of electronic record keeping systems and this led to my then psychologist jumping at the opportunity and removing my diagnosis altogether.

Most autism support groups online are open to self-diagnosed individuals. The main one I was part of at the time, however, I found out, was not. I was heavily criticized and distrusted by the other members after I’d lost my diagnosis. They thought my psychologist had finally unmasked me as someone with a personality disorder rather than autism.

Of course, I also needed an autism diagnosis in order to get the right support. With just borderline and dependent personality disorder on my file, I would be treated much differently by the mental health agency than with autism as my diagnosis. I wouldn’t be able to get support from the intellectual disability services agency either. Thankfully, I got my autism diagnosis back.

Interestingly, the psychologist who removed my autism diagnosis, always said that diagnoses didn’t matter, yet she was the one constantly throwing around new diagnostic labels at me. In a sense, an official diagnosis doesn’t matter, in that self-diagnosis is valid too, at least outside of the need for services. For instance, I self-identify with a dissociative disorder even though I haven’t had this official diagnosis in over eight years. However, to say that labels don’t matter and that all that matters are the symptoms, as she said, is quite frankly wrong. Especially in the context of the need for services.

After all, I am the same person with the same symptoms whether I am diagnosed as autistic or as having borderline and dependent personality disorder. The treatment approach is quite different though. With autism, I need structure and a fair amount of support. With BPD and DPD, I mostly need to be taught to self-regulate by being made to take responsibility. Of course, in an ideal society, services aren’t rigidly based on someone’s diagnosis, but in our current healthcare system, they are. Because of this, I am so glad I currently have a well-established autism diagnosis and that my current support team at least don’t question it.

Friends and Buddies

This week’s topic for Throwback Thursday is friendship. I was never really good at making friends. I still don’t have any real friends other than my husband. I mean, of course I could consider some of my fellow clients “friends”, but our relationship isn’t as deep as that of normal adult friendships.

In early childhood, I did have one friend. Her name was Kim and we used to make mud castles together. Or anything out of sand and water really. Kim’s last name translates to “peat” and my father used to jokingly call her “Kim Mud” rather than “Kim Peat”.

When I went to the special school for the visually impaired at the age of five, I started in a first grade class despite being of Kindergarten age. All girls in my class were at least a year older than me and they enjoyed “babysitting” me. In exchange, for the next three years, I’d help them with their schoolwork.

By the age of nine, I transferred to a different school for the blind. Though I did have a friend there, I was also an outcast and got heavily bullied.

My best time socially was my one year at the special ed secondary school for the blind. I had one good friend there, but also got along pretty well with everyone else in my class and most kids in my school in general.

All that changed when I entered mainstream high school at the age of thirteen. Within a month, everyone had formed cliques except for me. A few months later, my favorite clique took me under their wing and pretended to be my friends, only to drop me again when they’d had enough of me. I was friendless for the remainder of the six-year program. I didn’t really care. Or maybe I did, but I was determined to show my parents and teachers that I could earn a mainstream high level high school diploma. And I did. Not that I use it for anything now, but oh well.

Another topic mentioned in the Throwback Thursday post title at least is buddies. This reminds me of the autistic student buddy program I was part of during my two months of attending university. This program assigned a psychology student volunteer buddy to an autistic student to help the autistic with planning their coursework or other activities related to their studies. It worked in theory, but the catch was that these buddies were volunteers helping only with certain things for one or two hours a week at most. At the time, you couldn’t get paid support workers for assistance related to college or university studies, as the reasoning was that if you could be a student in college or uni, you should be able to do the planning and related tasks yourself. Needless to say my buddy got overwhelmed within a week. I feel intensely sorry for her.

The reason I mention this, besides it being in the post title, is the fact that I realize I struggle to maintain a distinction between social and professional relationships and, with the buddy, things got even muddier. I mean, friendships are supposed to be reciprocal, while professional relationships are not. For this reason, I am allowed to unload my shit to a professional without needing to listen to theirs. Professionals, however, get paid, while friends don’t. With the buddy, the situation got complicated, in that my fellow students called on my buddy to calm me when I was in a meltdown. That clearly wasn’t her role.

This thing about lack of reciprocity, however, also probably killed off that mainstream high school friendship I pretended to have. I don’t blame myself entirely though: my so-called “friends” also felt obligated to hang out with me out of pity, and that’s never a good reason to be someone’s friend.

This Is “Profound Autism”?: Reframing the Discussion Around Complex Care Needs

A few days ago, there was a discussion on the Autism Science Foundation’s Facebook page in which parents of autistic adults with complex care needs were describing their children with the hasthag #ThisIsProfoundAutism. I asked to reframe the discussion to include people with multiple disabilities including autism in general, because it is rarely (but not never!) autism, no matter how severe, alone that causes a person to be completely dependent on caretakers. I then explained that due to the combination of my disabilities, I need 24-hour care, including one-on-one for most of the day.

Not surprisingly, I was quickly met with the question whether I was saying I needed 24-hour help with basic tasks such as eating, bathing, dressing myself, etc. Well, the Autism Science Foundation page is a public Facebook page and I didn’t want the people on my friends list (including immediate family) who don’t know this, to judge me for it, but the short answer is yes. While I, like presumably most “profoundly autistic” people who don’t have physical disabilities, am physically capable of eating and dressing myself for the most part with some difficulty, my executive dysfunction means I still need help with them. As for bathing, well, I basically need someone to wash me, because, while I can physically hold a washcloth in my hand, I don’t have the organizational skills to actually work out the ritual without a ton of supervision and even then it’d lead to a lot of meltdowns.

I did, incidentally, point out that I recognize intellectual disability as a valid additional disability that needs to be taken into account when I asked to reframe the discussion. After all, that’s most likely what’s causing these autistic adults to be unable to understand instruction and to be completely dependent. For me, it’s a combination of executive dysfunction, which is a direct autism symptom, blindness, mild cerebral palsy, and other things.

I also do recognize that the need for support with severe challenging behavior is not the same as the need for help with basic personal care. One does not exclude or necessarily include the other and one is not more valid than the other. I, for one, am somewhat more independent in terms of eating, dressing and bathing than my severely intellectually disabled fellow clients. I am a lot more dependent where it comes to the effects of my challenging behavior.

I also do not mean to say that autism on its own cannot possibly cause a person to need a lot of care. It can. I am reminded of a girl I read about on Dutch social media many years ago, who indeed had hardly any functional communication skills but did have an IQ above 85. She, unlike me, didn’t have any additional disabilities. She was completely left behind in the care system: she was too severely disabled for traditional child and adolescent mental health services, but her IQ was too high for intellectual disability services. Really, I should not have called for reframing the discussion to include those with multiple disabilities, but those with complex care needs in general.

That being said, I strongly disagree with those people who say that just because I can write, means I should have ignored the conversation, since it clearly wasn’t meant for me. The fact that I can write, does not make me not dependent on care providers and does not mean policy or lack thereof won’t affect me. I am autistic and that, along with my blindness and other disabilities, causes me to need the extensive care I get now.