Tag Archives: Employment

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.

J – #AtoZChallenge on Mental Health

Welcome to the letter J post in my #AtoZChallenge on mental health. This is one of the hardest letters – I mistyped it in the theme reveal. I’ve come up with just two words and they’re not very related.

Jobs

Mentally ill people are particularly likely to be unemployed. Like I said when discussing experience, some institutions create special jobs for people with mental illness to work as recovery or experience workers. These are paid jobs not suited for people in long-term inpatient care, although they are very suitable for people who have overcome a long-term institution life. People still in long-term care can become part of a recovery group. This is often seen as volunteer work and earns you around €10,- for two hours a week of attendance.

People who are long-term institution patients of course have to do something during the day. Some of these activities are simple industrial or administrative duties. At my old institution, these were purely seen as day activities and didn’t earn you any momey. At my current institution, patients doing this work earn like €1,- an hour. That’s still only a small percentage of what people in regular employment earn, of course – minimum wage islike €10,-. People doing this type of work often still call it their “job”. People doing creative day activities usually don’t.

Juvenile

Children can get mentally ill too, of course. I recently read that as many as 30% of children in the UK have a diagnosed psychiatric disorder. Now I assume this includes autism and ADHD, which are not always seen as a mental illness. However, among older children and adolescents is also a significant number of sufferers of depression, anxiety and eating disorders. Even among younger children, mental illness can happen. I even heard of psychiatrists specializing in infant and toddler mental health.

Most mental health agencies serve people of all ages, but there are also separate children’s mental health agencies, especially for inpatient treatment. Even those agencies that serve all ages have separate units and treatment teams for children and adolescents. In the Netherlands, after all, child mental health care is regulated by the Youth Act rather than the various laws regulating adult mental health care.

Career Aspirations

I have been feeling rather uninspired in the blogging department lately. It couldb e the lingerng effects of #Write31Days, the fact that my mind is too unquiet to write, or both. It could be something else entirely. I started to write a post earlier this evening, but deleted it after I went off on a tangent. The post was on my parents’ jobs and aspirations and how my aspirations growing up were different.

My mother worked in administration at a major science institute for 35 years. She started as a data entry assistant or something in 1977 and worked herself up to project management by the time she quit her job in 2011. When she started working for this institute, she had just earned a low-level high school diploma through adult education at the age of 22. She has regretted her entire life that she never got any more education. In spite of this, she worked herself up to a well-paying position where all of her colleagues had college degrees.

My father dropped out of college sometime in the 1970s. He was a physics major for years, but never got beyond the foundation (first-year) certificate, although he did work as a student assistant for a while. After leaving the university, my father worked various jobs and then was a homemaker for years, doing all sorts of community service while caring for my sister and me. It was through a volunteer job at my high school that he found employment in 2000: he was doing computer maintenance on a voluntary basis and got more and more tasks, until he eventually said he was willing to continue his job provided he got paid. He worked as a system administrator for ten years until he too quit his job.

My parents had gone on a very different path through education and employment. My mother was hard-working, always looking to make up for her lack of formal education. My father was more laid-back. Nonetheless, when I spoke to my parents about my own education and my parents’ decisions regarding it, they assured me they had always been on the same page, expecting me to reach my full academic potential.

I never had a good understanding of my mother’s job. In 2006, when I was myself in college, we had to interview someone about their job for communication skills. I assume I did a lousy job at the interview, because I still hardly have a clue what my mother’s project management duties entailed. With regard to my father’s job, I had a greater understanding, but still I find it hard to explain what he did except for fixing my computer when it was broken.

Consequently, I never aspired to become like my parents in terms of employment. I never understood why someone wanted to work in administration and, by the time my father got his job, I had already figured out I didn’t want to work in computers either. The reason I probably never aspired to get one of my parents’ jobs, however, is probably that neither did they. I don’t think that, growing up, my mother wanted to work in administration and computers didn’t exist when my father grew up. My parents are a great example of what my high school student counselor once said: hardly anyone ultimately gets the job they envisioned for themselves at the end of high school. A possible exception are those growing up among generations and generations of doctors or lawyers, and these are not a small group among the students of my high-level high school. However, in today’s era of flexibility in employment, very few people get to become exactly what they aspired to be thirty years on.

I probably already blogged about my childhood aspirations. Like many girls, I gravitated more towards working with people than objects. This turns out to be a common distinction between girls and boys on the autism spectrum, too. While autistic girls, being autistic, do not have good people skills, they do generally have more people-focused (special) interests than do boys.

I suppressed my interest in people-focused jobs for years. This had to do with my being aware of my lack of social skills, but also with the fact that both of my parents gravitate more towards objects than people. Both have a strong dislike for people in the “helping professions”. This could’ve been parlty learned, because the “helping professionas” weren’t all that helpful when I was growing up. However, I learned in school that children develop a preference for people vs. objects early on and this is a strong determiner of later career choices. Like I said, a common misconception about autism is that autistics naturally gravitate more towards objects than people. This is not necessarily true, particularly in autistic girls. Although my parents, both with some autistic traits, fit the stereotype, I do not.

How Mental Illness Has Impacted My Life #Write31Days

31 Days of Mental Health

Welcome to day 20 in the #Write31Days challenge on mental health. Today, after sharing a number of informational posts, it’s time for a personal one again. I’ve decided to pick another question from the 30-day mental illness awareness challenge. This one is about the effects your mental illness has had on your life.

In 2005, I graduated from high school with good grades. The principal held a brief talk about each student before they’d receive their diploma. About me, he said I was going to study English in Nijmegen. This was my original plan for after high school, before I’d decided I wasn’t ready for college yet and wanted to go to a rehabilitation center for the blind first.

Until I graduated from high school, I was the only person who noticed something was off with me. That is, my parents and teachers did notice, but felt I was or should be capable of solving my problems with my intellectual abilities. By 2005, I was at my highest point in terms of believing I was “just blind”. You might think I had the highest self-confidence, but I didn’t. I was fiercely independent, but also terribly isolated.

By early 2006, I entered a training home for the disabled. I was adamant that I only needed a little daily living skills training and would be off to univeristy and independent living by September. It didn’t work out that way.

Mental illness has impacted many areas of my life. Of course, you could say that it was my blindness. You could say that the people at university in Nijmegen should’ve been more accommodating of my blindness. They weren’t particularly accommodating, but they reasoned all blind students who had previously attended, had been able to succeed with the accommodations they did provide. You might also reason that I should’ve gotten more orientation and mobility training whilst living independently, but twice a week is the absolute most you could get back then and it hasn’t gotten any better. In other words, of course my blindness did contribute to my eventual failure at independent living and at university, but apparently all “just blind” individuals are able to cope. I clearly wasn’t.

It was a common misconception at the acute ward that I was falling apart because of some problem relating to my blindness. I replied to this that, if my blindness was causing me to be suicidal, there’d be much better care for blind people with mental illness, because then each week there’d be a suicidal blind person somewhere. The truth is, I am multiply-disabled, including mentally ill, and it’s not just one of my disabilities that’s causing me to be unable to function independently.

Because I’ve been mentally unstable all my life, I can also not really compare my situation before and after the onset of my mental illness. I can only compare my situation to the ideal I had in mind for myself. Doing so, I realize that mental illness has affected my education. I can no longer go to regular college and can only do distance learning courses one at a time. This means I will most likely never earn a certificate that’s worth anything.

Mental illness has also impacted my work life. That is, due to mental illness, I have none. Of course, I did get disability benefits without a problem when I was eighteen and “just blind”, but, as my parents reasoned, this would be a temporary situation. It’s now more than likely that I’ll be on disability for life.

Mental illness has made independent living essentially impossible. I pretty much need to be able to reach someone for support 24/7. It doesn’t have to be a professional carer per se. At least I hope that in time, my husband will be able to fulfill this role to an extent. This in turn obviously impacts my relationship. However, since my husband was my first boyfriend and I met him when already on the edge of mental breakdown, I have nothing to compare our relationship to. I think in this area I’m pretty well off however, in that at least I am in a long-term, loving relationship.

When I’d Grow Up…

Last Friday when I was at my parents’, we had a long discussion. We often do. My sister was frustrated that she still doens’t have a “real” job at 27. Neither do I at 29, but it doesn’t frustrate me as much unless others are talking about how much of a failure they are for not having a “real” (or “real” enough) job. After all, we measure what we want to achieve by what the people around us (want to) achieve.

My sister is the only memeber of my family with a college degree. Nonetheless, my father attended college and my mother would’ve wanted to attend post-secondary education at least, which she never got the opportunity for. Therefore, it was instilled in me that I need to achieve. I knew at an early age that I was later going to a high level high school and maybe even university. When I was twelve and starting secondary education, I wanted to be a mathematician or a linguist when I grew up.

It hadn’t always been this way. When I was in Kindergarten, probably I wanted to be a princess or a Mommy like every other girl in my class. Starting by first grade however, I wanted to be a writer and I continued to want to be a writer far into high school.

My parents did of course tell me that you couldn’t make a lviing out of writing, so I had various other aspirations throughout school. For the longest time, I wanted to be a teacher, switching form elementary education when I was myself in elementary school to various secondary subjects when I was in high school to finally wanting to be a college professor when I’d finished high school. I did have some bad thoughts about burning out while teaching and landing on disability, but never quite gave into these thoughts.

I also for a long time wanted to get married and start a family. When I was an adolescent, I for a while thought I was a lesbian. I can’t remember what I thought regarding marriage and children at that time. Of course, gay couples have been able to legally marry since 2001 here in the Netherlands, but this was the same time when I thought (as it turns out correctly) that I was on the autism spectrum. I thought this meant (as it turns out incorrectly) that autistics didn’t marry, so probably neither would I. In fact, I didn’t give a long-term relationship much thought until it happened with my husband.

As it turns out, I did study linguistics for a bit in 2007 and was planning on becoming a scientist in this field. It never worked out. Obviously, I never even attempted to become a teacher. I am however somewhat of a writer now, having had my first piece published in a book last June. I am also of course married and happily so!

Mama’s Losin’ It

Everyday Gyaan

Autistic Adults and Independence

I skipped a day of the September blog challenge because I was at my parents’. I had a good time. Today I came down with a cold, so am not really in the mood for writing, but I’ve got to keep up with the blog anyway. Besides, I just have to write my own spin on autism and independence, which Pam Byrne wrote an interesting post on.

Pam is the mother of an autistic adult with signifcant care needs. Though I am probably more capable in some ways than Pam’s son Alex, I am an autistic adult with significant care needs. I used to also be an autistic advocate, fighting for the rights to proper care and services for autistic adults. I always said autistics should be allowed to live and work in the community. It took myself being institutionalized to learn that society isn’t prepared for that. Of course, we should fight to get society prepared, but not every autistic person or parent of an autistic person has the resources and time and energy to do so. I bet most do not.

I remember back in 2010 or 2011 reading some research that said most autistic people attain a relatively normal level of independence, but do so around ten years later than most neurotypical people. I do not remember whether the research included autistics with co-existing intellectual disability or other additional needs. Even if it did, there still will be a significant number of autistic adults who do not reach expected levels of independence. For example, as Pam also says, the unemployment rate among autistics is about 70 to 80 percent. You could again put this down to discrimination. I won’t. After all, even the most willing employer could not employ me.

Maybe if I’d gotten early autism intervention, I would’ve been more independent than I am now. Maybe. Maybe not. Maybe it wouldn’t have made a significant difference, because my biggest problem is not a lack of practical skills. It is the fact that it’s not safe for me to be without access to support.

Of course, we need to teach autistic children and adults the skills to become the best they they can be. However, there are some skills some autistic people will just not learn. We could advocate for more applied behavior analysis training for older children and even adults with autism. I won’t. I don’t have the energy to go into all the things that are worng with ABA. Let me just say that I for one am completely overwhelmed with intensive skills training. Instead, we need enough supports to make sure autistic people can live a fulfilling, satisfying life.

Everyday Gyaan

Jobs for Autistic People #AtoZChallenge

Welcome to day ten in the A to Z Challenge on autism. Today’s post is on employment and jobs for autistic people. I personally do not have a paid job, but many autistic people, even those with co-existing intellectual disabilities, can be successfully employed. They do need to choose jobs that utilize their strengths and their employer needs to be willing to accommodate them.

Already in 1999, Temple Grandin wrote an excellent article on choosing the right job for someone with autism or Asperger’s Syndrome. She explains that autistic and Asperger’s people usually have very poor working memory and cannot multitask. While some people are visual thinkers, like herself, some autistic people are more verbal thinkers, being good at math and/or memorizing facts. In the tables attached to the article, Grandin lists jobs that are bad for autistic people, jobs that are good for visually-thinking autistic people, jobs that are good for verbal thinkers with autism, and jobs that are good for non-verbal or intellectually disabled autistics.

Of course, being able to perform certain tasks does not guarantee being able to get a jbo. In today’s society, increasing demands are placed on social skills and flexibility, precisely the skills which autistics invariably have difficulty with. Many countries, including the Netherlands and the United States, have laws prohibiting discrimination on the grounds of disability. However, a person must prove that they are otherwise qualified for the job and that they are being discriminated against based on their disability.

How many people with autism are employed? This is not precisely known. It is however thought that fewer autistic people are employed than people in most other disability groups. For example, a study cited here says that only 32.5% of young adults with autism spectrum disorders worked for pay. The National Autistic Society in the UK presents an even grimmer statistic: according to them, only 15% of autistic people are employed full-time. Given that the benefits system in the UK is quite strict on people with mental disabilities (and it’s probably worse in the U.S.), 51% of autistic people have spent time without employment or benefits.

Deriving Quality of Life from Success

Everyone defines success differently, as a post on Single Mother Ahoy! illustrates. The author starts out by measuring her success through her child’s achievements. As a childless woman, I will not measure my success by parenthood – even though I do esteem successful mothers higher than myself. That may be because they dominate the blogosphere, and my blog is one of a few things I use to measure my success by.

Success is not necessarily the same as quality of life, though it is related. For non-disabled people, it often is the same. At least, all the research I read defining quality of life for disabled people – and I assume the research is written from a non-disabled perspective -, determines quality of life through success. More so, it defines quality of life by success in areas important to non-disabled people. Common examples of measures of quality of life are employment, independent living and a long-term relationship. By these standards, my quality of life is fair, having achieved one of these three.

I understand people derive their quality of life from societal success. After all, we compare ourselves to others, and others are mostly non-disabled, middle- to upper-class people.

Then again, quality of life does not need to be derived from success in the workforce or on the relationship market. That doesn’t mean that quality of life and success are not related, as I said. I derive quality of life from writing for my blog, and I’m pretty sure I’d feel a lot worse about myself if I got no views or comments and a lot better if I got more than I get now. I actually believe that even the most severely disabled people derive quality of life from success. Only they and I measure success differently than non-disabled people do.

That being said, even non-disabled people probably derive part of their quality of life from relatively small successes. I refuse to believe I’m the only blogger who feels their writing contributes to their quality of life even though they don’t earn anything through it and even though they’re not receiving tons of views. I refuse to believe I’m the only crafter who crafts only for the joy of it and the community that interacting with fellow crafters brings. Honestly, these small joys are much more important to me than my high-level high school diploma ever was or a job ever will be.

Life with a Disability Isn’t Easy

I decided to buy a new eBook again and went with I’m Not Here to Inspire You by Rob J. Quinn, a collection of essays (most originally posted on his blog) on life with severe cerebral palsy. In the first essay, Quinn tackles the assumption among people with disabilities that life with disabilities is easy for other people.

I have seen this assumption, and held this assumption myself. Interestingly, I’ve seen it within the disability community too. When I disclosed my autism diagnosis on a blindness E-mail list, I was told that this need not keep me from living a productive life. Look at Temple Grandin! And since blindness by the philosophy of this group did not need to keep me from living a fulfilling life, there were no limits to me obtaining a Ph.D. Other than the fact that 95% of the non-disabled population don’t have a Ph.D., I might say.

We’d like to believe that all people need to do to achieve a productive life is ignore their limits. When you have a physical disability, these limits in the media are multiplied, and therefore the overcoming of them is a thousand times more inspiring. Reading these stories, sometimes actually endorsed by disability organizations, makes the ordinary disabled person look totally meek. I, for one, have never felt encouraged by Helen Keller or Temple Grandin, at least not by the inspiraporn that surrounds them. People with disabilities who live productive lives can offer valuable advice, but it’s not like their mere existence inspires me.

I remember reading a 1950s fictional book about a teen going blind and going to a special school. In it, one of his classmates, a totally blind boy, wants to run a shop when he’s older. People find him an inspiration, but he says something like: “If I want to run a shop when I’m older, I need to pour as much energy into it as my far-away uncle who sits on the government does.” This book dates from the 1950s as I said, when you could only become a telephone operator if you were blind and living in the Netherlands. However, what it signifies as that living a productive life with a disability is hard.

Like Quinn, I don’t mean this to discourage people with disabilities. However, I want to say that it’s not like a disability has no impact. It’s not like you can just ignore it and say “So what?” to eveyr hurdle and move on. Of course, keeping a positive attitude is better than to dwell on negativity, but it’s not like it will magically get you your dream job. Besides, keeping a positive attitude is not the same as never being frustrated.

The Degree, the Job, and the Child

What do these things have in common? Well, they represent goals I had for myself as a teen and thought I’d reach at some specific time prior io 2014. I not only didn’t, but will almost certainly never reach these goals.

The degree: when I was thirteen in 1999, I switched from special education to grammar school. It was pretty much expected that everyone who attended this school wanted to and would go to univeristy after graduation. I knew I would graduate grammar school by 2005, and calculated that this would mean graduating university by 2009. I wanted to major in Dutch at the time. The idea fo rmy major has changed many times over the course of my secondary school experience, but the idea that I’d graduate university by 2009, didn’t.

The job: during my first year at grammar school, I admired my Dutch teacher. She was in her mid to late twenties and had been working at the school for several years. I had a vision by which I’d be a teacher of Dutch like her by 2010. Now I know that, by 2010, most university graduates, even the excellent ones, didn’t get a teacher job a year after graduating, but I didn’t know this by 2000. My ideas about what teaching was like, were very detailed and quite screwed. Actually, if I had to fit my ideas with a job, they’d be more suited to a school counselor than a teacher. Having personally experienced a teacher overstepping the boundaries of his job, and having seen the admired Dutch teacher burn out during my second year at grammar school, I am glad I didn’t pursue a teaching job myself. Not that I’d pass teacher education, but it’s better to realize this yourself than to have someone else kick you out of the program.

The child: I never thought much about how I’d meet the child’s father or otherwise get pregnant. In fact, for a while I believed I was a lesbian. Nonetheless, I was sure I’d give birth to my first child by 2013. My ideas about her were pretty detailed, so in a way it’s good I didn’t give birth last year or I’d mess up if I got a boy. I imagined myself as a true breeder, as I thought of getting two or three more children.

I know now that it’s 2014 and none of these dreams have come true, that I shouldn’t really have clung to them as goals, but as just dreams. After all, I had control over only a minority of circumstances which would lead to these dreams coming or not coming true. I’m not saying that people can’t be the leader of their own lives, but there is only so much you can control. You can be the leader of your life in how you choose to handle the circumstances you end up in. Some of these circumstances you can change yourself, but some you can’t.