Tag Archives: Autism

Play

And I didn’t continue with the #AtoZChallenge after all. Now I could write my Q post today and just have enough time to get to Z on April 30, but I have no clue what to write about that starts with Q. Besides, I’d just be too behind. I will continue with random reflections whenever I can, but I’m tiref of sticking to the alphabet. At least, the challenge so far taught me that I can, in fact, write a blog post almost everyday.

A few minutes ago, I looked at the friendly fill-in questions for this week. I’m not inclined to join in with the thing in a traditional way. However one of the prompts stuck out to me. It was: “When I was a child, I loved to play ___”. Today, I’m going to write about the joys of playing as a child (and as an adult, too).

As regular readers know, I’m autistic. However, when I was a toddler, I wasn’t the type to line up my toys. In fact, at about age three, I had three PlayMobil figures called Pekel, Foet and Laren. No, these aren’t common Dutch names. The characters would just eat, drink and go to the toilet. Nothing too interesting but nothing too stereotypical either.

I also loved to play outside. I loved the swings in particular. When we were on vacation at the campsite, I’d also climb a tree. I wasn’t as adventurous as my sister, but I nonetheless enjoyed getting outdoors.

One other memory that stands out is my learning to rollerskate at aroudn age eight. My next door neighbor, who was the same age as me, used to teach me and my sister and a bunch of other girls (and a few boys). It was fun until I realized how I, being legally blind, wasn’t able to keep up. Once I was about twelve, I eventually learned to rollerblade too. That too didn’t last long, as my vision became too poor.

My sister and I would play with dolls too. I’d often make up the stories. Like, we were going on vacation to Suriname with the dolls, because, you know, my sister’s doll was brown. Though I showed some level of imagination – more so than my neurotypical sister -, I could be quite controlling. For example, I’d get upset whenever my sister said “said the doll” after a sentence that the doll supposedly said.

I continued to play with dolls and Barbie dolls until I was around fourteen. By the time I was thirteen and about to transfer to mainstream school, I decided I really needed to stop playing. However, I didn’t know what else to do. Once my computer and eventually the Internet took my interest, I hardly ever played anymore.

As an adult, I had a time when my inner child parts were particularly active and I’d even buy Barbie dolls for them. They however usually enjoy stuffed animals. I still sleep wth a bunch of stuffies on my bed.

Neurodiversity: What I Like About My Neurodivergence #AtoZChhallenge

Welcome to day 14 in teh #AtoZChallenge. Phew, I completed half the challenge already. Today’s letter is N and my word for today’s post is “Neurodiversity”. Neurodiversity is the concept whereby people with different neruologies, such as autistics, are still equal. People who support neurodiversity value autism and other similar conditions as neurological variations rather than disorders.

I for one appreciate neurodiversity. I am not a radical supporter, as I do see autism and such conditions have clear disadvantages. However, I support the social model of disability in this respect. As such, I see autism as a disability, not just a difference, but not a disorder either.

I am neurodivergent. I am formally diagnosed autistic and self-identify with a couple other neurodivergent conditions. Today, let me share what I like about my neurodivergence.

First, I like my ability to perseverate on things I truly feel passionate about. I do not have one special interest that I’ve had for life. Rather, I’ve had many over the course of my lifetime. However, when I have a special interest, I can really be passionate abut it. Unfortunately, I don’t have one now.

On a similar note, I like my ability to hyperfocus. If I want to get information about something, I will fully dive into it. For example, when my husband and I were discussing moving out of area, I had no trouble comparing all the community care policies for the different cities we were thinking of moving to.

I like my “splinter skills”. This is what professionals call areas in which autisitc people have a lot of knowledge that is out of line with their general intellectual ability. Though my general intellectual ability is above-average already, my calendar calculation skills at least used to be far better. They’re not as good now, unfortunately.

What special talent do you possess?

Emotions: Dealing with Emotion Regulation Issues #AtoZChallenge

Welcome to day 5 in the #AtoZChallenge of random reflections. For my letter E post, I focus on emotions. In this post, I’ll explain what it is like living with emotion regulation issues and how dialectical behavior therapy helps. Both I and my treatment team prefer the term “emotion regulation difficulites” over “borderline personality disorder traits”, as my emotion regulation issues are likely in part due to my autism. Also, borderline personality disorder is very stigmatized. Now I know the solution to that is not to avoid the term, but I do feel I’m not the “classic” borderline.

First, I have difficulty understandign my own emotions. This is called alexithymia and is relatively common in autistic people. I can usually tell whether I’m feeling “good” or “bad”, but not whether “good” is joy or love or “bad” is anger, sadness, etc.

I feel “bad” far more often than I feel “good”. This may be because I suffer with depression too. I however tend not to express my depression as sadness. Rather, I express all “bad” feelings as irritability. Over the years, I have gotten slightly better at knowing when I’m genuinely angry and when it’s another feeling that I express as irritability.

In dialectical behavior therapy (DBT), the treatment I follow for my emotion regulation difficulties, we learn to counteract emotions by acting opposite to how the emotion “makes” us act. For example, one skill that I’m trying to practice is to half-smile, accepting the situation as it is even if I don’t like it. I initially thought that acting opposite to emotion was acting cheerful whenever a cheerful mood was expected. For example, I’d greet my husband enthusiastically when he’d come home even though I still felt like crap. Now I know that you’re not supposed to “fake it”, but that acting opposite from your initial impulse might help you achieve your goals. For exaple, if I feel like crap and want to stay in my room all the time, it may be more effective if I reach out to my husband instead.

Dialectical behavior therapy also teaches me about the misconceptions about emotions I may have. One of them is that some emotions are just stupid and shouldn’t be felt. Another is that emotions come up for no reason at all. In fact, emotions all happen for a reason and as such have value. Now that I write this, I realize this is the strongest argument against fake cheerfulness. It is important to acknowledge an emotion without judging it, but also without dwelling on it too much. Mindfulness, as such, is the first skill of DBT.

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

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

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

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

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

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

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

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

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

Cuts to My Day Activities Hours

And again I really didn’t get to write as much as I’d like to have done. The past week was quite busy. I had my first session of movement therapy on Tuesday and a meeting with my nurse on Thursday. Actually, I would’ve had a session with my CPN, but she’s off sick. I was so grateful that my nurse asked whether I wanted an appointment with her instead, as I really needed to talk.

I’ve not been doing well lately. I’m very irritable and easily overloaded. I switch a lot between being completely in my “rational mind” and feeling terribly emotional. I try to use my DBT skills, of course. Not that I’ve come far on the formal DBT course I do with my CPN, but I’ve been doing it by myself. I do an okay job when I’m not overwhelmed, but once overwhelmed, all my skills go out the window.

I mostly find that I can’t handle this huge, gaping split between my (verbal) IQ and my emotional, practical and behavioral functioning. At day activities, this is becoming more and more problematic. The staff are telling me that my irritability upsets the other clients, who are “like a baby” and can’t understand. I tell them that I don’t understand stuff myself, either, but because I’m not intellectually disabled, I should somehow be able to be more capable.

Because I’m too much of a handful, my day activities are being reduced. I won’t get additional home support in exchange. This upsets me greatly. It feels as though, when I need more help the most, I’m punished for it by getting less. Again, the main reason is my IQ, because other people with significant behavioral challenges at my day activities, get more care.

“We don’t do psychiatry.” That’s my day activities staff’s reasoning for cutting my hours when I’m too irritable. The other staff even mentioned finding me another place to go. I don’t know where. I mean, day activities for mentally ill people cater mostly to those with psychotic disorders. I have experience with that and I run into the same crap I get here there. After all, people with schizophrenia can’t help reacting to their voices either.

For clarity’s sake, I’m not saying that people with severe intellectual disabilities or those with actively psychotic schizophrenia should just be able to hold it togehter. I know they can’t, but I can’t always hold it together either.

I know my staff try their best. The staff who decided to cut my day activities hours, got angry when I told her they’re expecting too much out of me. I know she’s never worked with a person of at least average intelligence who still has signiificant sensory issues and challenging behavior. I know the manager probably told her to prioritize her main focus group, ie. those with severe intellectual disabilities. It’s interesting that she refers to the other clients as “the clients”, not “the other clients”, when she talks to me.

However, I can’t keep from being reminded of all the great lengths to which the staff go to accommodate their other clients with challenging behavior. For one person, a staff goes to his group home to provide him day activities one-on-one. Two at my group get several hours of one-on-one too. I don’t ask for that, but I don’t ask for the other extreme, ie. being cut off my hours, either.

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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.