I turned 30 last year, chronologically speaking. (My actual age is debatable, but that's an entirely different discussion.) Societally speaking, that's supposed to mean I'm to have my life together. What exactly "having one's life together" means is also debatable, because the American dream of "college education, good job, house, car, spouse, kids, retirement," isn't really feasible in its entirety for most people in my generation, let alone most autistic people overall.
This is less an issue with autistic people as people, and more an issue of how many of those expectations are flatly unfair.
First and most obviously to anyone of my generation, if you get a college education and aren't rich, you have to take out loans. Lots of loans. The days of being able to put yourself through college on a summer job or a part time job during the year ended in the 1980s.
The fun part (sarcasm) about Medicaid is that its income restrictions (meant to make sure only the poor and disadvantaged use it) haven't scaled with inflation over the years, so you also usually have to be nearly destitute to benefit from it. Remember that good job you wanted? Yeah, probably not happening if you need support services.
Even if you can get Medicaid, finding the right services is extremely challenging. A good supports coordinator is supposed to do that for you, but with the high turnover rate, good ones can be hard to find, and in some cases, your area may simply not have what you're looking for. If you need assistance moving around, taking care of things at home, or simply want something to do during the evenings, you're at the mercy of what's available to you. In rural areas and some suburban areas, that's not necessarily much.
Having a car is often essential to having a job and a social life, but like a house (on a lesser scale) it isn't necessarily affordable (cost of a car, and then insurance, maintenance, and repairs) or even feasible. With certain types of disabilities, such as visual difficulties or anxiety disorders, you can't even pass the tests or complete driver's ed training for your driver's license. In fact, fewer and fewer teens in general are getting their drivers licenses. Not surprising, then that only 1 in 3 autistic teens are successfully acquiring their licenses.
My first car was a gift from my grandmother, after she decided she was done driving herself around. Had my need for a car not coincided with that occurrence, I might not have had a car while I was in college. Trying to buy a car while in college would likely have been impossibly difficult for me, as I was struggling to simply survive college for the first couple years. And that's assuming the money was even there for such a purchase.
With less mobility (either due to lack of a car, or due to other transportation difficulties), it becomes harder to keep up a social life. Once out of school, the forced daily social interaction disappears, and we're left with online communities and little else. A church can offer some activities, as can supports derived through Medicaid or paid out of pocket.
Beyond that, though, the "easy" routes are gone, and you're left trawling for interest groups, visiting local events if you can (again, transportation!), and spending lots of time online. Finding a spouse in all of that is... difficult, to say the least. Autism is literally defined by having significant difficulties with social interactions and rules. And a managing relationship is basically that, but all the time, and with high emotional stakes. Autistic people tend to be fantastically loyal, which endears us to some people, but the strain of routine miscommunication can be difficult for both partners to bear in the long term.
For me, I didn't find my spouse, he found me. This was fortunate, because during most of school, I radiated "leave me alone" vibes. I'd learned that people tended to be cruel to me, and there weren't sufficient positive reasons to interact with people for me to bother. If you were decent to me, I was decent to you, and otherwise I tended to ignore you. This does not lend itself well to meeting new friends.
So I knew Chris from my second high school. He happened across me when I'd had enough of the day and was having a good cry on the library steps. I had a class with him, so he wasn't simply some stranger come to gawk at me. He proceeded to plop himself down and sit with me while I was miserable, asking after my wellbeing despite it being blatantly obvious I was not doing well and he was asking to get an unhappy earful.
We did not magically become close friends that day, but I remembered that incident, and so when he said hello again, a couple years later, I responded instead of ignoring him as I would most random messages on Facebook. This repeated about once a year during college, still with no romantic interest on either side. We worked at the same place one summer as well, and he was again friendly without expectations or demands of me. One year (2013, I think?), he messaged me again on Facebook, the conversation never really died after that.
This is all to underline that while the marriage we have now is definitely a partnership of equals, the actual groundwork was all by his efforts. Most autistic people don't get that lucky, and don't have persistent former acquaintances turn into friends, and then partners in life. Rather, the autistic person has to put in effort to find friends, through dating sites, church, interest groups, etc, and one of those may turn into a romantic partner, and perhaps into a life partner.
With all the debt and/or limited finances you've accrued, even if you find a good spouse, kids are not necessarily an option. Not everyone wants kids, first and foremost (which can break relationships, by the way!). But also the sheer expense makes it not feasible for some couples. In the US, the cost of raising a single child is around $245,000. That's not including a college education, and if you're still in debt paying for your own education, how are you supposed to afford a kid, and then help your kid with their own education?
For autistic people, there's worries about autism being genetic and passing it or any mental or physical illnesses you might have on to your kids. There's also the question of whether you can manage yourself and your life as well as a tiny defenseless human. Or whether the people in your life will allow you to do that, for some people with higher support needs. (Having high support needs doesn't mean you can't make a good father or mother, but it does make it more complicated.)
Kids or not, eventually you will grow old. People my age tend to have less saved aside than previous generations, due to the factors I listed above, and more. Retirement, therefore, is a bit of a pipe dream. Eventually, though, our bodies begin to fail us more and more, and work becomes more difficult. It's likely that millennials like myself will be expected to work to age 70, perhaps even longer, in order to qualify for Social Security. Health advancements might make that extra time more feasible for the general population.
But the autistic population is a bit of a different story. We already struggle to have work. Our life expectancies are much less than our peers. Mental illnesses, seizures, gastointestinal problems, even heart disease, all occur at higher rates for autistic people. Some estimates for an autistic lifespan are as high as the 50s, some are in the 30s. Compare that to the current general population's life expectancy (70), and you'll get the grim picture.
Obviously I won't know my personal life expectancy until I actually die, but I got good genes on one side of my family for longevity. Also, one of the main killers of autistic people, suicide, is not currently a factor. I have depression and anxiety due to the strain of not fitting in, but my depression is on the milder side, and the emotional pain is not so great and all-encompassing as to outweigh the knowledge of what my death would do to the people that care about me.
Retirement for autistic people won't be a simple affair. The popular conception of a lengthy vacation until your death is mostly a dream at this point. It's better for people overall to have some form of meaningful activity to do with their lives. Volunteer work, for example. That is most likely what my retirement, should I live long enough to have one, will look like.
I've deconstructed the "normal" expectations for a person's life in the US, and why they're unfair and unreasonable, especially for autistic people, it begs the question: what is reasonable? The answer varies by the person. This is why person-centered planning is important: finding out what the person wants in life, what their skills are, what their interests are, and what their needs are, is how you begin figuring out what kind of life to aim for. (For a really good parent-written book on this subject, read this post.)
This is less an issue with autistic people as people, and more an issue of how many of those expectations are flatly unfair.
Starting with college education, since that's normally the first thing on this list people achieve, or don't. The promise here with a college education is that you'll become a well-rounded, well-equipped person who can then proceed more successfully in life.
This financial strain of the loans you take out to pay for tuition, room, and board beggars your income from any job you might get post-college... which statistics show us is not guaranteed to be a good one using your degree anyway. Those statistics are across the mainstream population, and it's not just a temporary rut you fall into- the underemployment can last for much of your life. Your prognosis only gets worse if you add in special needs.
Personally, I attempted to get a "good job" via an internship in my minor at the local library system. The internship went well enough, and led, after some time, to a "good job" at a local company... but due to miscommunications, depression, and massive anxiety attacks, I lost that job and pretty much never regained that path since. I worked several "underemployment" jobs doing secretarial work, but even those didn't last. My current job, as an advocate and consultant, pays only sporadically.
Personally, I attempted to get a "good job" via an internship in my minor at the local library system. The internship went well enough, and led, after some time, to a "good job" at a local company... but due to miscommunications, depression, and massive anxiety attacks, I lost that job and pretty much never regained that path since. I worked several "underemployment" jobs doing secretarial work, but even those didn't last. My current job, as an advocate and consultant, pays only sporadically.
Regardless of how much you make and whether it uses the degree you went to college for, you are paying a mortgage on your life, effectively. On average, this debt will take 21 years to pay off.
That puts a bit of a damper on getting a house. To have a chance at a house, you need to have money for a down payment, which means having savings. Y'know, that thing you don't have because of student loans and medical bills. You also need to be able to save some money for property taxes, maintenance, and repairs, because stuff does like to break.
I have a house at this moment because my spouse has a "good job" that he likes, and I had the good fortune to be born to parents that were good about saving money in the long term, as well as a generous grandmother. Between our pitiful savings and the support of my relatives (who we are now paying back, and will be for years), we were able to make the down payment on a home in good repair and with sufficient space for us.
Unfortunately, my scenario is not the norm, even for neurotypical people. Mostly, people of my generation rent or live with our parents.
I have a house at this moment because my spouse has a "good job" that he likes, and I had the good fortune to be born to parents that were good about saving money in the long term, as well as a generous grandmother. Between our pitiful savings and the support of my relatives (who we are now paying back, and will be for years), we were able to make the down payment on a home in good repair and with sufficient space for us.
Unfortunately, my scenario is not the norm, even for neurotypical people. Mostly, people of my generation rent or live with our parents.
The latter option is particularly common for autistic people due to our higher support needs. Our parents are often our first advocates and know our needs best. Finding the supports we need to live our best lives is difficult and expensive. Usually there's only one route to receive those services: Medicaid. Otherwise known as the service that tends to routinely deny first time applicants*.
The fun part (sarcasm) about Medicaid is that its income restrictions (meant to make sure only the poor and disadvantaged use it) haven't scaled with inflation over the years, so you also usually have to be nearly destitute to benefit from it. Remember that good job you wanted? Yeah, probably not happening if you need support services.
Even if you can get Medicaid, finding the right services is extremely challenging. A good supports coordinator is supposed to do that for you, but with the high turnover rate, good ones can be hard to find, and in some cases, your area may simply not have what you're looking for. If you need assistance moving around, taking care of things at home, or simply want something to do during the evenings, you're at the mercy of what's available to you. In rural areas and some suburban areas, that's not necessarily much.
Having a car is often essential to having a job and a social life, but like a house (on a lesser scale) it isn't necessarily affordable (cost of a car, and then insurance, maintenance, and repairs) or even feasible. With certain types of disabilities, such as visual difficulties or anxiety disorders, you can't even pass the tests or complete driver's ed training for your driver's license. In fact, fewer and fewer teens in general are getting their drivers licenses. Not surprising, then that only 1 in 3 autistic teens are successfully acquiring their licenses.
My first car was a gift from my grandmother, after she decided she was done driving herself around. Had my need for a car not coincided with that occurrence, I might not have had a car while I was in college. Trying to buy a car while in college would likely have been impossibly difficult for me, as I was struggling to simply survive college for the first couple years. And that's assuming the money was even there for such a purchase.
With less mobility (either due to lack of a car, or due to other transportation difficulties), it becomes harder to keep up a social life. Once out of school, the forced daily social interaction disappears, and we're left with online communities and little else. A church can offer some activities, as can supports derived through Medicaid or paid out of pocket.
Beyond that, though, the "easy" routes are gone, and you're left trawling for interest groups, visiting local events if you can (again, transportation!), and spending lots of time online. Finding a spouse in all of that is... difficult, to say the least. Autism is literally defined by having significant difficulties with social interactions and rules. And a managing relationship is basically that, but all the time, and with high emotional stakes. Autistic people tend to be fantastically loyal, which endears us to some people, but the strain of routine miscommunication can be difficult for both partners to bear in the long term.
For me, I didn't find my spouse, he found me. This was fortunate, because during most of school, I radiated "leave me alone" vibes. I'd learned that people tended to be cruel to me, and there weren't sufficient positive reasons to interact with people for me to bother. If you were decent to me, I was decent to you, and otherwise I tended to ignore you. This does not lend itself well to meeting new friends.
So I knew Chris from my second high school. He happened across me when I'd had enough of the day and was having a good cry on the library steps. I had a class with him, so he wasn't simply some stranger come to gawk at me. He proceeded to plop himself down and sit with me while I was miserable, asking after my wellbeing despite it being blatantly obvious I was not doing well and he was asking to get an unhappy earful.
We did not magically become close friends that day, but I remembered that incident, and so when he said hello again, a couple years later, I responded instead of ignoring him as I would most random messages on Facebook. This repeated about once a year during college, still with no romantic interest on either side. We worked at the same place one summer as well, and he was again friendly without expectations or demands of me. One year (2013, I think?), he messaged me again on Facebook, the conversation never really died after that.
This is all to underline that while the marriage we have now is definitely a partnership of equals, the actual groundwork was all by his efforts. Most autistic people don't get that lucky, and don't have persistent former acquaintances turn into friends, and then partners in life. Rather, the autistic person has to put in effort to find friends, through dating sites, church, interest groups, etc, and one of those may turn into a romantic partner, and perhaps into a life partner.
With all the debt and/or limited finances you've accrued, even if you find a good spouse, kids are not necessarily an option. Not everyone wants kids, first and foremost (which can break relationships, by the way!). But also the sheer expense makes it not feasible for some couples. In the US, the cost of raising a single child is around $245,000. That's not including a college education, and if you're still in debt paying for your own education, how are you supposed to afford a kid, and then help your kid with their own education?
For autistic people, there's worries about autism being genetic and passing it or any mental or physical illnesses you might have on to your kids. There's also the question of whether you can manage yourself and your life as well as a tiny defenseless human. Or whether the people in your life will allow you to do that, for some people with higher support needs. (Having high support needs doesn't mean you can't make a good father or mother, but it does make it more complicated.)
Kids or not, eventually you will grow old. People my age tend to have less saved aside than previous generations, due to the factors I listed above, and more. Retirement, therefore, is a bit of a pipe dream. Eventually, though, our bodies begin to fail us more and more, and work becomes more difficult. It's likely that millennials like myself will be expected to work to age 70, perhaps even longer, in order to qualify for Social Security. Health advancements might make that extra time more feasible for the general population.
But the autistic population is a bit of a different story. We already struggle to have work. Our life expectancies are much less than our peers. Mental illnesses, seizures, gastointestinal problems, even heart disease, all occur at higher rates for autistic people. Some estimates for an autistic lifespan are as high as the 50s, some are in the 30s. Compare that to the current general population's life expectancy (70), and you'll get the grim picture.
Obviously I won't know my personal life expectancy until I actually die, but I got good genes on one side of my family for longevity. Also, one of the main killers of autistic people, suicide, is not currently a factor. I have depression and anxiety due to the strain of not fitting in, but my depression is on the milder side, and the emotional pain is not so great and all-encompassing as to outweigh the knowledge of what my death would do to the people that care about me.
Retirement for autistic people won't be a simple affair. The popular conception of a lengthy vacation until your death is mostly a dream at this point. It's better for people overall to have some form of meaningful activity to do with their lives. Volunteer work, for example. That is most likely what my retirement, should I live long enough to have one, will look like.
I've deconstructed the "normal" expectations for a person's life in the US, and why they're unfair and unreasonable, especially for autistic people, it begs the question: what is reasonable? The answer varies by the person. This is why person-centered planning is important: finding out what the person wants in life, what their skills are, what their interests are, and what their needs are, is how you begin figuring out what kind of life to aim for. (For a really good parent-written book on this subject, read this post.)
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