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.

Food Plan: A Week of Healthy Eating

It’s been six months since I embarked on my weight loss and healthier living journey. It’s been going with ups and downs. I lost five kilograms in my first month of attempting to lose weight. Then, I slowly lost more then gained it back. At the end of October, I was at the same weight I’d been at in early July. IN other words, while I had maintained the loss of those first five kilograms, I hadn’t lost any more. Now over the month of November, I lost three kilograms again. I now only need to lose two kilograms to no longer be obese. This means that the goal I set last June, which was to be just plain overweight rather than obese within a year, is still within reach.

One exercise I came across when reading journaling guides for overeaters, is to imagine one day of normal eating. The idea is to imagine what it’d be like to eat normally for a day, then put that plan into actual action. The thing is, even when I was still deep in disordered eating, I usually had a few days of mostly normal eating before I’d down a whole bag of sweets and/or a bag of crisps and/or other unhealthy foods wthin half an hour. For this reason, I’m going to change the exercise a little and create a food plan for a week. Most things I have already implemented, in fact.

Breakfast

I will eat a healthy breakfast each day. This means I’ll eat lower-fat yoghurt with muesli. I used to eat crunchy muesli most days, but I changed that to regular fruit muesli about a month ago. This contains significantly less calories than crunchy muesli, but it does seem to contan somewhat more sugar. Last week, I bought muesli with nuts, which I think I’ll like better than fruit muesli anyway and which is less sugary.

Lunch

I used to eat two slices of bread with peanut butter. Last month, I decided to get sandwich spread instead, which is much lower in calories, although some people tell me it’s not necessarily healthier.

In addition to bread, I started eating a few carrots, tomatoes and cucumber slices for lunch each day. I love to snack on vegetables and particularly the carrots make me feel full too.

Dinner

My husband cooks and serves my food, so I generally trust him to make me relatively healthy meals and limit my portions. Each Friday though, he gets us fries with a snack. When I restarted my weight loss journey a month ago, I thought I’d have to let go of this, but I don’t. Weight loss doesn’t mean never eating any unhealthy food, after all. That’s why I’m pretty wary of Overeaters Anonymous’ idea of abstinence as a goal. I much prefer Eating Disorders Anonymous’ idea of balance.

Snacks

I can have fruit or rice crackers as snacks when I’m home from day activities in the afternoon. During morning coffee at day activities, I should try to turn down the gingerbread, as it’s pretty high in calories and I don’t even like it very much.

On Wednesday, we have a cooking activity at day activities. I love it and am so glad I have been able to fully participate in it, including eating, while still losing weihgt. The staff usually serve it, so they decide on portion sizes.

Every other Friday, my mother-in-law accompanies me to the pharmacy to pick up my medications. I have decided that I can still buy myself something to snack on at the grocery store that’s near the pharmacy, but it needs to be something relatively healthy. For example, the last time, I had chicken bites. Then, I ate them all in one sitting, which I’m not planing on doing tomorrow. I’m still undecided as to whether I can get myself the chicken bites again and hope I’ll restrain myself and leave some for my husband, or whether I should get something else. Here, the goals of abstinence versus balance are competing again.

Drinks

I usually have coffee, tea and water throughout the day. I can have a fizzy drink or juice every once in a while. I should aim for at least two liters of fluids each day. Not even so much for weight loss purposes, but more to prevent getting constipated.

Doctor #WotW #PoCoLo

So I had two doctor’s appointments this week. First, like I said last Monday, I was seeing my GP on Wednesday regarding my mild motor skills impairments. A little explanation is in order. I have always had fine and gross motor skills impairments. Since they are so mild, they have always seemed practically non-existent in the face of the major disability of my blindness. As a child, I held my parents’ hand till I was at least twelve. This was however seen as a lack of self-confidence. I did use my white cane when prompted, but since I had trouble accepting my deterioratng vision, I apparently chose dependence on others over the white cane. When I did use it though, I often used it as a walking stick.

Now I’m no longer ashamed of the white cane. I in fact prefer to have it with me even if I walk sighted guide, because then at least people will see I’m blind. Still, despite having had countless orientation and mobility training sessions, I still cannot seem to use the white cane in its proper way. Even so, I feel very unsteady when walking independently. I would love to learn to improve, because, even though there is no route in our village I’d like to learn to walk without anyone accompanying me, I’d love to be able to walk without holding onto someone’s arm. That would enable me to go to events on my own by accessible transportation, which I now avoid due to not wanting to ask strangers to be my guide.

As for my fine motor skills impairments, I cannot eat neatly no matter how hard I try. I find this terribly embarrassing. I also struggle with preparing my own breakfast, pouring myself drinks and other skills that require the use of both hands. I can perform tasks that require just my right hand just fine and I can use my left hand for support, but activities that require coordinating both hands, just don’t work without adaptations. I’m curious to know whether such adaptations exist.

My GP looked up what seemed to have been a letter written by my previous GP in the institution. It said that I was born prematurely (correct), had a stroke as a baby (not correct, it was a brain bleed) and developed hydrocephalus as a result (correct). The resulting impairments are diagnosable as acquired brain injury. I seem to have read that when a person sustains a brain injury before age one year (or three in some countries), it’s not diagnosed as an ABI. The correct diagnosis, well, I don’t know. Motor impairments are, or so Dr. Google tells me, often diagnosed as cerebral palsy, but then they have to be severe enough, which I doubt mine are. I didn’t question the doctor though, although the confusing diagnosis did frustrate me more than I’d hoped it would. After all, my intention was to ask about treatment options.

The doctor told me that, if I’ve been stable for over two years, there’s no hope for neurological improvement. This timeframe is longer in children, but since I’m now 31, I’ll pretty much have to learn to live with my impairments. Still, I might benefit from occupational therapy and possibly a little physical therapy to help me learn to use adaptations and learn compensatory strategies. The doctor is going to contact the nearest rehabilitation center to ask whether an occupational therapist can take me on. My blindness may be an issue though, in which case I’ll need to see an occupational therapist at the blindness agency. They don’t often know acquired brain injury though. Seeing both is not an option insurance-wise.

I also saw the mental health agency’s general doctor on Thursday. The physical health screening with the nurse and all the things I didn’t know about my childhood conditions, were what had prompted me to see my GP. I discussed the GP visit for a bit. Then we went over the lab work the doctor had ordered. Everything was within the normal range except for one thing, creatinine, which was a little high. The most likely reason for this is that I don’t drink enough water.

With these two appointments and my having been having them on my mind all week, my word of the week is going to be “doctor”.

The Reading Residence
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Adaptations and Services I’ve Used to Overcome My Disabilities

Last year, I wrote a post describing my limitations in as much detail as I could then. I got the idea from a disability discussion E-mail list that I was a member of in like 2004. The next discussion topic on the list was to go into adaptations you’ve used to overcome your limitations. Today, I will share about these.

As a toddler, I seem to have gotten by mostly without adaptations. I did have low vision, motor ipairments and was socially a little immature, but nothing too dramatic. I did have many colds until my tonsils and adenoids were removed at age four. I also saw a lot of specialists. For example, when I was about four, I was seen by some kind of rehabilitation physician because I neeed a cast on my left foot. I got lots of physical therapy and other early intervention too. However, I attended a regular preschool and Kindergarten until I fell apart in the spring of my second year of Kindergarten. Kindergarten always takes two years here, but I didn’t finish my second year because of needing to go to a special school that didn’t have a Kindergarten. Instead, I started in first grade early.

At around this age, I mostly got adaptations for my fine and gross motor impairments. For example, I got adapted scissors to be able to cut shapes out without needing to exert too much strength. I also got a large tricycle funded through the local disability services when I was about eight. I’m confused as to where my parents got the necessary doctor’s signature to get this mobility equipment. I mean, I must’ve seen a rehabilitation physician to declare that I had a severe enough mobility impairment, but I wonder whether the ophthalmologist agreed I had enough vision to cycle safely.

Of course, I did have some adaptations for my vision at this point too. I started reading large print in first grade. In fact, I had taught myself to read at around age five with large rub-on letters my Mom would put into little books for me.

By the end of first grade, I had to learn Braille because my vision was deteriorating. I got long keys on my Braille typewriter so that again I didn’t need to exert as much strength. For reading, at first the teachers would provide my Brailled assignments with double line breaks, because I had a hard time with it otherwise. Eventually, I could read Braille just fine, but it didn’t become my preferred reading method until I got a computer.

I still did use the vision I still had. In fact, I stll do, even though I only have light perception and a little light projection left. At age ten or eleven, I got a handheld magnifier. I remember using it to see the large print atlas we had in fifth and sixth grade, even though I really couldn’t make out anything on it.

By the time we moved across the country when I was nine, my parents stopped taking me to medical specialists. There was nothing to be done about my eyesight getting worse and worse and I no longer needed specialist care for my other disabilities. That is, this is my parents’ version of the truth. I think they may be right but there are some things that just don’t add up. Like, from age twelve on, I was accused of deliberately having an odd posture. Guess what? At age fifteen, the school doctor discovoered I had scoliosis. I had to have physcal therapy again.

At age thirteen, I started regular secondary school. I was functionally blind by this time and did my schoolwork on a computer with Braille display. I also got tactile graphics for the STEM subjects and tactile maps for geography. I also got lots of other nifty math tools, most of which I could barely use. I couldn’t even use tactile graphics much at all.

Like I said, I was discharged from all medical specialists at around age nine. At nineteen, when I graduated secondary school, I went back into care at the rehabilitation center for the blind. Besides orientation and mobility, housekeeping and other blindness-related training, I had to get physical therapy again for my scoliosis.

In 2007, I was finally diagnosed with autism and landed in the psychiatric hospital (not at the same time, mind you). My current psychiatrist remarks that I got little in the way of treatment there and she’s right. At first, it was thought I just needed to be moved into a group home and all would be fine, then when I got my last psychologist, it was decided I just needed a good kick in the behind and to move into independent livng as soon as possible.

Now that I’m 31, I don’t really use many adaptive devices other than my Braille display and my white cane, the latter of which I use more for stability than for its intended purpose. My iPhone has a built-in screen reader and I guess it won’t be long until NVDA is almost as good as JAWS for a computer screen reader. NVDA is free and open source, whereas JAWS costs several hundreds of dollars (that thankfully currently health insurance pays for).

I said eye doctors goodbye for good (except when I need a note to say I’m blind) in 2013 when my last chance to get a little sight back failed. I still see a psychiatrist, though my medcation regimen hasn’t changed in years. I have a community psychiatric nurse, whom I see biweekly for dialectical behavior therapy. As for my mobility, I’m due to see my GP on Wednesday to ask about this and about any treatments or adaptations that could help me improve.

Naptime Natter

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.