Hopeful futures for autistic teens
June 5, 2020 8:15 PM Subscribe
My daughter was finally diagnosed as being on the autism spectrum last year. She's been reading lots of discouraging statistcs about poor outcomes for Autistic people in education and employment. How do I best encourage her?
Like many other girls on the spectrum, she fought her way through elementary and middleschool without anyone flagging her, because she was bright (knew how to read fluently before she started school) and did what she was told by her teachers. High school has been more difficult, and we are looking into whether ADHD is also a factor for her. She is doing a lot of research and reading very depressing statistics about people with autism and how a high percentage don't graduate high school or university, or learn how to drive, or live independently. Some days she says she is planning to achieve merit grades and some days she says she will probably fail everything. (Neither of these is an impossible outcome) She's very worried that she'll never learn to drive, and that jobs will be too overwhelming. Like the asker of a slightly earlier question today I'm probably not totally neurotypical myself. How do I encourage her? I just want her to know she will eventually find a place in the world that fits her.
Like many other girls on the spectrum, she fought her way through elementary and middleschool without anyone flagging her, because she was bright (knew how to read fluently before she started school) and did what she was told by her teachers. High school has been more difficult, and we are looking into whether ADHD is also a factor for her. She is doing a lot of research and reading very depressing statistics about people with autism and how a high percentage don't graduate high school or university, or learn how to drive, or live independently. Some days she says she is planning to achieve merit grades and some days she says she will probably fail everything. (Neither of these is an impossible outcome) She's very worried that she'll never learn to drive, and that jobs will be too overwhelming. Like the asker of a slightly earlier question today I'm probably not totally neurotypical myself. How do I encourage her? I just want her to know she will eventually find a place in the world that fits her.
Think about the difficulties she had getting a diagnosis, then think of all the bright, obedient women out there who were never diagnosed and aren't included in any of these statistics about life outcomes.
I know half a dozen successful adult women who are only now realizing that they are non-neurotypical as their children get a diagnosis of being on the spectrum, but it wasn't something anyone knew when my generation was your daughter's age. Only children who seemed severely disabled were diagnosed in the first place. In other words if you *could* live independently, you wouldn't be diagnosed as autistic. The idea of a spectrum is so so new.
posted by muddgirl at 8:28 PM on June 5, 2020 [9 favorites]
I know half a dozen successful adult women who are only now realizing that they are non-neurotypical as their children get a diagnosis of being on the spectrum, but it wasn't something anyone knew when my generation was your daughter's age. Only children who seemed severely disabled were diagnosed in the first place. In other words if you *could* live independently, you wouldn't be diagnosed as autistic. The idea of a spectrum is so so new.
posted by muddgirl at 8:28 PM on June 5, 2020 [9 favorites]
The reason why these statistics exist is not to prove that autistic people can't succeed, but to show to policy makers that their current institutions are failing to support autistic people and they need to change, so please keep in mind that.
posted by yueliang at 8:41 PM on June 5, 2020 [7 favorites]
posted by yueliang at 8:41 PM on June 5, 2020 [7 favorites]
I don't know much about this topic at all but what about positive role models/people to look up to? Eg Greta Thunberg is autistic and is obviously a very effective activist. I know some other women who are on the autism spectrum who are gainfully employed and very smart so I'm sure you can find some examples for her to read up on or maybe even mentors if you look around.
posted by knownfossils at 9:54 PM on June 5, 2020
posted by knownfossils at 9:54 PM on June 5, 2020
About the statistics, the autism spectrum is truly a spectrum. Some people have the diagnosis and they are very successful in life but have certain "quirks" that come from not being neurotypical. Other people are so disabled that even as a adult, many of their skills are more in the range of a preschooler. Clearly, your daughter is doing so much better than those at the far end of the spectrum and yet their experience is included in those statistics.
The more useful thing is focus on her very specific patterns of strengths and differences. I would encourage her to read more about girls and women with autism not as a prediction of what will happen to her but more as a way of seeing what might be same and different between their experience and hers. For the ones that have points in common, she can see if there are any ideas she can borrow from their experience that might help her.
A resource that might work for her is the book Aspergirls which describes the many different ways that autism can show up in different girls.
posted by metahawk at 10:27 PM on June 5, 2020
The more useful thing is focus on her very specific patterns of strengths and differences. I would encourage her to read more about girls and women with autism not as a prediction of what will happen to her but more as a way of seeing what might be same and different between their experience and hers. For the ones that have points in common, she can see if there are any ideas she can borrow from their experience that might help her.
A resource that might work for her is the book Aspergirls which describes the many different ways that autism can show up in different girls.
posted by metahawk at 10:27 PM on June 5, 2020
If she has an interest in statistics more generally, you might encourage her to read about bias in data collection and analysis, and discuss how it applies here. She could work out some numbers based on the rate of diagnosis in the past, consider if it makes sense to assume the differences reflect a low rate of diagnosis, and calculate corrected actual rates for the past based on those assumptions.
posted by yohko at 12:10 AM on June 6, 2020 [1 favorite]
posted by yohko at 12:10 AM on June 6, 2020 [1 favorite]
This is anecdotal, but I work with many high-functioning autistic students at the undergraduate level because the university where I teach has a specialized program that provides supports for them, connects with their parents, etc. There are programs like this out there so that bright students on the spectrum, like your daughter, can and will succeed in higher education. Students who receive these supports are among the smartest, funniest, and most successful I've ever taught. She can find an educational experience that works for her. Feel free to memail me if you'd like more specific information about this program, as an example.
posted by Miss T.Horn at 12:43 AM on June 6, 2020
posted by Miss T.Horn at 12:43 AM on June 6, 2020
I'm autistic, AFAB, an early reader and did well at school. I also did most of my homework at the last minute in form class and was completely disorganised and kept losing my coat.
Now I have a successful and rewarding career in engineering.
When I was at school, autism diagnosis was not a thing, unless you had really big problems, and even then you might just be diagnosed as being a bad kid with terrible behaviour. So people like me aren't part of the statistics.
I definitely find some adult stuff overwhelming, but I've found it possible to work around that (grocery delivery saves going to the store! friends can be found who prefer dog walking to bars!). Thanks to the pandemic it's also become easier to work from home, which is calmer than the office. As an adult you can organise your own place in an autism friendly fashion, and live on your own if other people in your personal space is a challenge.
I find it harder to learn some physical skills, but in general it seems that it just takes longer for me than it might for other people, and luckily once you pass your driving test nobody cares how many lessons it took.
Spending time with little kids I have found to be a great way to remind me to have as much patience with myself as I would with a kid who's struggling with some new challenge, or accidentally messed something up, or is having a meltdown because they need a nap.
posted by quacks like a duck at 1:14 AM on June 6, 2020 [5 favorites]
Now I have a successful and rewarding career in engineering.
When I was at school, autism diagnosis was not a thing, unless you had really big problems, and even then you might just be diagnosed as being a bad kid with terrible behaviour. So people like me aren't part of the statistics.
I definitely find some adult stuff overwhelming, but I've found it possible to work around that (grocery delivery saves going to the store! friends can be found who prefer dog walking to bars!). Thanks to the pandemic it's also become easier to work from home, which is calmer than the office. As an adult you can organise your own place in an autism friendly fashion, and live on your own if other people in your personal space is a challenge.
I find it harder to learn some physical skills, but in general it seems that it just takes longer for me than it might for other people, and luckily once you pass your driving test nobody cares how many lessons it took.
Spending time with little kids I have found to be a great way to remind me to have as much patience with myself as I would with a kid who's struggling with some new challenge, or accidentally messed something up, or is having a meltdown because they need a nap.
posted by quacks like a duck at 1:14 AM on June 6, 2020 [5 favorites]
I just want to echo the sentiment that the autistic people we have data on outcomes for are largely not the people in your daughter's position.
I'm another AFAB person who's as convinced as they can be that they're on the spectrum but without a formal diagnosis (wrong age/wrong assigned gender at birth). It wasn't picked up when I was at school because my intense special interests have always been language and people, which look enough like "this person is adequately socialised" if it's the 90s and you're not paying attention.
I'm pleased to say that I have a good life on the whole. I have a well-paying job that I really enjoy, a loving relationship and lots of friends, hobbies and interests. Life has been harder in some ways than it might have been if I'd had some support and acknowledgement around my differences at an earlier age, so I think it's a good thing that your daughter has been diagnosed now - she's already in the demographic that's likely to do significantly better than the most-severely-impacted autistic people, and she has the opportunity to benefit from acknowledgement and support that some things will be different for her compared to neurotypical people.
My life could only have been made easier and less stressful/traumatising with appropriate support/intervention/OT (and to be clear, the trauma came from lack of acknowledgement/support that I was autistic rather than from being autistic), but my parents were very resistant to the idea that there was anything wrong with their children, as they believed it reflected badly on them as parents (personally I think the fact that they blocked my access to appropriate mental health care as a teenager reflects much worse on them as parents than the fact that I was neurodivergent in the first place, but whatever). It doesn't sound like your family has the same kind of barriers, so I wish you and your daughter luck but I strongly suspect she's going to do just fine.
posted by terretu at 3:54 AM on June 6, 2020 [2 favorites]
I'm another AFAB person who's as convinced as they can be that they're on the spectrum but without a formal diagnosis (wrong age/wrong assigned gender at birth). It wasn't picked up when I was at school because my intense special interests have always been language and people, which look enough like "this person is adequately socialised" if it's the 90s and you're not paying attention.
I'm pleased to say that I have a good life on the whole. I have a well-paying job that I really enjoy, a loving relationship and lots of friends, hobbies and interests. Life has been harder in some ways than it might have been if I'd had some support and acknowledgement around my differences at an earlier age, so I think it's a good thing that your daughter has been diagnosed now - she's already in the demographic that's likely to do significantly better than the most-severely-impacted autistic people, and she has the opportunity to benefit from acknowledgement and support that some things will be different for her compared to neurotypical people.
My life could only have been made easier and less stressful/traumatising with appropriate support/intervention/OT (and to be clear, the trauma came from lack of acknowledgement/support that I was autistic rather than from being autistic), but my parents were very resistant to the idea that there was anything wrong with their children, as they believed it reflected badly on them as parents (personally I think the fact that they blocked my access to appropriate mental health care as a teenager reflects much worse on them as parents than the fact that I was neurodivergent in the first place, but whatever). It doesn't sound like your family has the same kind of barriers, so I wish you and your daughter luck but I strongly suspect she's going to do just fine.
posted by terretu at 3:54 AM on June 6, 2020 [2 favorites]
My brother is on the spectrum, and my parents were very invested in having a "normal" child, so I never received a diagnosis or any support. That said, I think I'm probably on the spectrum too. I looked into getting a diagnosis as an adult, but nothing was covered by insurance and every place suggested by AANE wanted $2,000 for the test.
I did really well in school until high school. (Academically -- I was bullied very hard and had no friends in my classes.) I went a magnet school for high school and finally made friends, but I wasn't top of the class. In college, I struggled and also didn't make any friends, but I wound up cum laude, so I think I did ok. I now have a master's degree and work as a front end developer, something I've been interested in since I was 9.
It took a long time for me to learn how to drive, but I'm a very safe driver now with no at-fault accidents on my record for the past 10 years (I'm 28). I drive everywhere.
I'm not very successful socially (I have like two friends), but I'm in a committed relationship and was supposed to get married this year until COVID-19 hit. My future spouse is neurotypical, but he's hard of hearing, so he went through a lot of the same bad social situations I did growing up. He's good at the things I suck at (and vice versa), so we make a good team.
Even my brother, who has been very clearly neurodiverse from the start, has a master's degree and a job as a software engineer. He can't drive, but he lives independently and owns his own apartment in a walkable neighborhood. (Not being able to drive isn't a kiss of death; it just takes more planning.)
People like us can do well, or even succeed. College-wise, it helps if you have a special interest, pick something adjacent to that, and seek institutional support. I think I would have had a much easier time had I had access to all the amazing programs they have now. Your daughter will be fine.
posted by marfa, texas at 3:58 AM on June 6, 2020 [2 favorites]
I did really well in school until high school. (Academically -- I was bullied very hard and had no friends in my classes.) I went a magnet school for high school and finally made friends, but I wasn't top of the class. In college, I struggled and also didn't make any friends, but I wound up cum laude, so I think I did ok. I now have a master's degree and work as a front end developer, something I've been interested in since I was 9.
It took a long time for me to learn how to drive, but I'm a very safe driver now with no at-fault accidents on my record for the past 10 years (I'm 28). I drive everywhere.
I'm not very successful socially (I have like two friends), but I'm in a committed relationship and was supposed to get married this year until COVID-19 hit. My future spouse is neurotypical, but he's hard of hearing, so he went through a lot of the same bad social situations I did growing up. He's good at the things I suck at (and vice versa), so we make a good team.
Even my brother, who has been very clearly neurodiverse from the start, has a master's degree and a job as a software engineer. He can't drive, but he lives independently and owns his own apartment in a walkable neighborhood. (Not being able to drive isn't a kiss of death; it just takes more planning.)
People like us can do well, or even succeed. College-wise, it helps if you have a special interest, pick something adjacent to that, and seek institutional support. I think I would have had a much easier time had I had access to all the amazing programs they have now. Your daughter will be fine.
posted by marfa, texas at 3:58 AM on June 6, 2020 [2 favorites]
Would it be helpful for her to see examples of (or interact with) high-achieving autistic women? One such woman in my community comes to mind- she is an attorney and a school board member, and is currently running for State Assembly. I could point you and your daughter to her social media if that would be interesting/helpful to you all.
posted by juliapangolin at 4:44 AM on June 6, 2020
posted by juliapangolin at 4:44 AM on June 6, 2020
The definition and understanding of autism today is completely different than what it was when I was growing up in the '90s. Back then she would probably been diagnosed either with Aspergers or with nothing at all, largely because she's able to function so well in the larger world. In her place I wouldn't look at any study over 5 years old or so, and even then, she has to realize that most adults with autism never received a diagnosis or support while growing up. People with autism who were diagnosed as such and did receive support growing up are only now emerging as a cohort, and right now it's still largely too young a cohort to yield relevant data on adult life.
It's important for her to internalize this partly because what a lot of studies do show is that we have a tendency to meet expectations, both high and low. Believing you're in a group more or less likely to do well can actually affect how well you do.
She's young now, and she clearly has a lot of talents and abilities. While getting good grades in high school can definitely make life a little easier, it's far from the only way to succeed and a lot of people who had trouble in high school or college - for any of a variety of reasons - find ways to do fine later. It might be worth it to look at the next few years as a period for her to focus less on grades and more on figuring out exactly (a) what things come easily to her, (b) what things don't, and (c) what approaches help her manage (b) most effectively. If she's able to do that at her age, she'll have an incredible head start over most other kids, and frankly a lot of adults. And because the understanding of autism has advanced so much recently, there are a lot more resources and professional therapists/coaches/etc she can make use of to figure these things out than were ever available before.
For now, one thing that might help a little is to teach her to recognize and appreciate the skills that she already demonstrates. Has she written a good paper recently? She probably showed an ability to recognize what the teacher intended in the assignment; to put together an argument that made sense; to recognize information relevant, and irrelevant, to her argument; to compose sentences and paragraphs that communicated clearly; to focus well enough to put the whole things together; not to mention use the relevant technology to get the job done. These aren't trivial things - a lot of people categorized today as neurotypical have trouble doing at least one of them. Any assignment done, craft created, drawing drawn, food cooked, room organized, friendship made, whatever - all those kinds of things require a lot of types of skill and creativity that most people never stop to think about and recognize. I think that recognizing them is important both for appreciating her own abilities, and for better understanding what it takes to do any particular thing she sets her sights on.
(also this is kind of out of left field, but I recently watched a TV show about interns and new hires trying, often with great difficulty, to do well in a corporate environment that is the opposite of hand-holding, where they have to figure out skills and interpersonal relationships on their own and where they each have different abilities and disabilities that they bring to the table. To say they have a hard time is putting it mildly, but they all do make it in the end in their own ways, and it's interesting to think about what helps them get there. The main character is presented as probably not neurotypical. It's a Korean show available with subtitles here. I'm recommending it because it spoke to me, as someone who often feels like a fish out of water with difficulty fitting the skills I have to what's expected. Other shows with neurodiverse leads might speak to her, as might shows that focus a lot on what different types of workplace are like.)
posted by trig at 5:52 AM on June 6, 2020 [2 favorites]
It's important for her to internalize this partly because what a lot of studies do show is that we have a tendency to meet expectations, both high and low. Believing you're in a group more or less likely to do well can actually affect how well you do.
She's young now, and she clearly has a lot of talents and abilities. While getting good grades in high school can definitely make life a little easier, it's far from the only way to succeed and a lot of people who had trouble in high school or college - for any of a variety of reasons - find ways to do fine later. It might be worth it to look at the next few years as a period for her to focus less on grades and more on figuring out exactly (a) what things come easily to her, (b) what things don't, and (c) what approaches help her manage (b) most effectively. If she's able to do that at her age, she'll have an incredible head start over most other kids, and frankly a lot of adults. And because the understanding of autism has advanced so much recently, there are a lot more resources and professional therapists/coaches/etc she can make use of to figure these things out than were ever available before.
For now, one thing that might help a little is to teach her to recognize and appreciate the skills that she already demonstrates. Has she written a good paper recently? She probably showed an ability to recognize what the teacher intended in the assignment; to put together an argument that made sense; to recognize information relevant, and irrelevant, to her argument; to compose sentences and paragraphs that communicated clearly; to focus well enough to put the whole things together; not to mention use the relevant technology to get the job done. These aren't trivial things - a lot of people categorized today as neurotypical have trouble doing at least one of them. Any assignment done, craft created, drawing drawn, food cooked, room organized, friendship made, whatever - all those kinds of things require a lot of types of skill and creativity that most people never stop to think about and recognize. I think that recognizing them is important both for appreciating her own abilities, and for better understanding what it takes to do any particular thing she sets her sights on.
(also this is kind of out of left field, but I recently watched a TV show about interns and new hires trying, often with great difficulty, to do well in a corporate environment that is the opposite of hand-holding, where they have to figure out skills and interpersonal relationships on their own and where they each have different abilities and disabilities that they bring to the table. To say they have a hard time is putting it mildly, but they all do make it in the end in their own ways, and it's interesting to think about what helps them get there. The main character is presented as probably not neurotypical. It's a Korean show available with subtitles here. I'm recommending it because it spoke to me, as someone who often feels like a fish out of water with difficulty fitting the skills I have to what's expected. Other shows with neurodiverse leads might speak to her, as might shows that focus a lot on what different types of workplace are like.)
posted by trig at 5:52 AM on June 6, 2020 [2 favorites]
The fact that you are a loving, supportive parent is going to go a longgggggg way. I love how you ended your question with the phrase "find a place in the world that fits HER" instead of the (customary) reverse. Some of us autists did not have that growing up and I can't overstate its importance.
Excellent compilation of resources by a self-identified "aspie" here. Mentioned in their list is the Autistic Women & Nonbinary Network.
The more your daughter can connect in any way with autistic non-men, the better off she'll be. Right now, when most socializing has moved to Zoom, is a good time.
I don't know how old your daughter is, but this meetup group for adult autistic women and femmes looks interesting. People under 18 can message the organizer if they want to join, but that doesn't guarantee admittance of course.
posted by Sheydem-tants at 7:17 AM on June 6, 2020 [2 favorites]
Excellent compilation of resources by a self-identified "aspie" here. Mentioned in their list is the Autistic Women & Nonbinary Network.
The more your daughter can connect in any way with autistic non-men, the better off she'll be. Right now, when most socializing has moved to Zoom, is a good time.
I don't know how old your daughter is, but this meetup group for adult autistic women and femmes looks interesting. People under 18 can message the organizer if they want to join, but that doesn't guarantee admittance of course.
posted by Sheydem-tants at 7:17 AM on June 6, 2020 [2 favorites]
The #actuallyautistic tag on IG, twitter, and as a search term on YouTube will bring up lots of accounts from autistic adults.
posted by assenav at 9:28 AM on June 6, 2020
posted by assenav at 9:28 AM on June 6, 2020
In addition to reading the personal stories here, she might want to read personal narratives from autistic women—it's not out in the US yet but here's a new memoir from an autistic writer I'm a big fan of, for instance. In general, we all know anecdotes aren't data but I think this is a case where that's a good thing. The outlook, on average, is a little dark (I'm thinking less of things like "not learning to drive" and more about things like this, also by Sarah Kurchak, I swear I'm just a fan and not her mom), but there are so many individual lives and futures that are so, so bright, including hers.
Someone else also pointed this out upthread, but many of these statistics really reflect the world's ability to adapt to autistic people, not the other way around. If she doesn't graduate college because she isn't getting enough support, for instance, that's on the college; it's not a marker of her failure, but theirs. This is cold comfort perhaps but it's true!
posted by babelfish at 10:33 AM on June 6, 2020 [3 favorites]
Someone else also pointed this out upthread, but many of these statistics really reflect the world's ability to adapt to autistic people, not the other way around. If she doesn't graduate college because she isn't getting enough support, for instance, that's on the college; it's not a marker of her failure, but theirs. This is cold comfort perhaps but it's true!
posted by babelfish at 10:33 AM on June 6, 2020 [3 favorites]
People covered most of what I wanted to say, but I did want to pop back in and expand a little.
As I mentioned, the samples of adults those statistics are drawing from are largely from people diagnosed when the criteria were much more restricted. Your daughter very likely would not have been diagnosed--not even have been considered for a diagnosis--back then. We used to think of autism as a form of childhood psychosis. Think about how a child would have to present for a doctor to think, "This child might have psychosis." Beyond even severity level, they focused on a very specific subset of autistic behaviors. Since then, we've expanded what we call "autistic" not just in severity but qualitatively as well. Sensory problems, for example, didn't use to be included. So if you had social difficulties and sensory problems, but didn't show other specific kinds of repetitive behaviors, you couldn't get diagnosed.
Even today, as you well know, many people are missed. One thing that I think people don't realize is that most of the major tests we conduct for autism have not been updated for the expanded definitions. Previously, autistic disorder and Asperger's disorder were two different things. Now they're considered the same disorder. The problem is, one of the gold-star parent interviews used to diagnose autism explicitly does not account for people we would have previously diagnosed with Asperger's. It measures for what we used to call autistic disorder. So even today, people who don't fit "classic" autism are missed, not just because of bias and poor education, but because our measures aren't tuned to that presentation of autism.
Yohko's point is another important thing to consider when looking at statistics about autistic people. Think about how that information is gathered. Typically, it's from organizations, groups, treatment centers, etc. that provide services for autistic people and/or their families. When researchers need participants, they typically recruit them from one of these settings. Many autistic people do not require or seek out these kinds of services, and they're largely missed by the research. In my own research, I've been tapping more online, identity-focused groups, and I've noticed a significant difference in experiences and perspective between these groups and the typical samples drawn from service-providing organizations. So there's skew there as well. Autism is a spectrum, but current research typically captures only a small portion of that spectrum.
Like Miss T.horn, I work in a specialized program for autistic undergraduates. I really want to emphasize the spectrum more, because even in a highly restricted sample (autistic people who get into this specific college) there's so much variability! I know several autistic people who either chose not to be involved in the program or attended before the program got started. Some of them did excellently, some struggled. Within the program, we have a similar range. Some of our students, in all honesty, probably would've been fine without our support and it's really more about assuaging the parents' anxieties. On the other hand, we have students that need a lot of support, and sometimes those students still struggle, because there's only so much we can do. The thing about autism statistics is that it can tell you a lot about general trends, and almost nothing about the individual.
Anyway, all that to say that many autistic people achieve the things your daughter desires, but it does not show up in the statistics. My university runs a social skills group for autistic teens, and we had a group of parents worried about this exact thing about a year ago. They had read all of their statistics and were all worried their kids weren't going to go to college, weren't going to drive, etc. I don't typically work with the parents, but the parent group facilitator pulled me in basically to intervene on the catastrophic thinking. One of the things I told them was that I am neurodivergent (diagnosis of "cognitive disability not otherwise specified"; I go back and forth between calling myself autistic and not, but my experiences definitely hew close to it). And you know what? Most of those kids were doing way better than I was at their age, in terms of school, friends, taking care of themselves, etc. As a teenager I was an executive functioning disaster with no friends who could barely keep up basic hygiene. These kids had struggles, sure, but overall they had more skills and better insight than I did at that age. And the one hugely important thing that those kids had on their side was supportive parents. My parents didn't give a shit, and sometimes actively worked against me. But I still made it through college and into a Ph.D. program and am living in an apartment with a partner of 9 years. I did that with no services, no interventions, no accommodations except 1.5x testing on my math tests. Kids with supportive parents, who get diagnosed early enough to receive supports and accommodations? Man, they're going to change the world.
I would also encourage you to talk to your daughter about what independent vs dependent means for her, what that looks like, and what she values about it. Does independent mean never getting help from you? Does it mean living totally on her own? Does it mean graduating high school/college? An "independent" life doesn't always look exactly like we expect. For example, I still can't drive, but I have a partner who loves to drive and I bought a car for us to share. Is that dependent or independent? I live with my partner, and there are still some things I can't do on my own. I still struggle a lot with motor control, which makes a lot of cooking things hard for me. On the other hand, my partner, who has ADHD, struggles with planning. So, I plan out recipes, and do all the simple stirring and measuring, but they do all the chopping and handling raw meat. There are many things like that where we support each other in the things we have difficulty with. Could either of us live entirely on our own? Probably not. But we make it work together, as a unit. Further, many jobs are overwhelming! There are tons of jobs I could never do, particularly retail/customer service. So I found jobs I could do, and focused on a career that played to my strengths and would accommodate the difficulties I have.
Independence can look many different ways. She can live a happy and fulfilling life even if she doesn't achieve every single milestone that society says you should, or achieve it differently than expected.
posted by brook horse at 1:14 PM on June 7, 2020 [10 favorites]
As I mentioned, the samples of adults those statistics are drawing from are largely from people diagnosed when the criteria were much more restricted. Your daughter very likely would not have been diagnosed--not even have been considered for a diagnosis--back then. We used to think of autism as a form of childhood psychosis. Think about how a child would have to present for a doctor to think, "This child might have psychosis." Beyond even severity level, they focused on a very specific subset of autistic behaviors. Since then, we've expanded what we call "autistic" not just in severity but qualitatively as well. Sensory problems, for example, didn't use to be included. So if you had social difficulties and sensory problems, but didn't show other specific kinds of repetitive behaviors, you couldn't get diagnosed.
Even today, as you well know, many people are missed. One thing that I think people don't realize is that most of the major tests we conduct for autism have not been updated for the expanded definitions. Previously, autistic disorder and Asperger's disorder were two different things. Now they're considered the same disorder. The problem is, one of the gold-star parent interviews used to diagnose autism explicitly does not account for people we would have previously diagnosed with Asperger's. It measures for what we used to call autistic disorder. So even today, people who don't fit "classic" autism are missed, not just because of bias and poor education, but because our measures aren't tuned to that presentation of autism.
Yohko's point is another important thing to consider when looking at statistics about autistic people. Think about how that information is gathered. Typically, it's from organizations, groups, treatment centers, etc. that provide services for autistic people and/or their families. When researchers need participants, they typically recruit them from one of these settings. Many autistic people do not require or seek out these kinds of services, and they're largely missed by the research. In my own research, I've been tapping more online, identity-focused groups, and I've noticed a significant difference in experiences and perspective between these groups and the typical samples drawn from service-providing organizations. So there's skew there as well. Autism is a spectrum, but current research typically captures only a small portion of that spectrum.
Like Miss T.horn, I work in a specialized program for autistic undergraduates. I really want to emphasize the spectrum more, because even in a highly restricted sample (autistic people who get into this specific college) there's so much variability! I know several autistic people who either chose not to be involved in the program or attended before the program got started. Some of them did excellently, some struggled. Within the program, we have a similar range. Some of our students, in all honesty, probably would've been fine without our support and it's really more about assuaging the parents' anxieties. On the other hand, we have students that need a lot of support, and sometimes those students still struggle, because there's only so much we can do. The thing about autism statistics is that it can tell you a lot about general trends, and almost nothing about the individual.
Anyway, all that to say that many autistic people achieve the things your daughter desires, but it does not show up in the statistics. My university runs a social skills group for autistic teens, and we had a group of parents worried about this exact thing about a year ago. They had read all of their statistics and were all worried their kids weren't going to go to college, weren't going to drive, etc. I don't typically work with the parents, but the parent group facilitator pulled me in basically to intervene on the catastrophic thinking. One of the things I told them was that I am neurodivergent (diagnosis of "cognitive disability not otherwise specified"; I go back and forth between calling myself autistic and not, but my experiences definitely hew close to it). And you know what? Most of those kids were doing way better than I was at their age, in terms of school, friends, taking care of themselves, etc. As a teenager I was an executive functioning disaster with no friends who could barely keep up basic hygiene. These kids had struggles, sure, but overall they had more skills and better insight than I did at that age. And the one hugely important thing that those kids had on their side was supportive parents. My parents didn't give a shit, and sometimes actively worked against me. But I still made it through college and into a Ph.D. program and am living in an apartment with a partner of 9 years. I did that with no services, no interventions, no accommodations except 1.5x testing on my math tests. Kids with supportive parents, who get diagnosed early enough to receive supports and accommodations? Man, they're going to change the world.
I would also encourage you to talk to your daughter about what independent vs dependent means for her, what that looks like, and what she values about it. Does independent mean never getting help from you? Does it mean living totally on her own? Does it mean graduating high school/college? An "independent" life doesn't always look exactly like we expect. For example, I still can't drive, but I have a partner who loves to drive and I bought a car for us to share. Is that dependent or independent? I live with my partner, and there are still some things I can't do on my own. I still struggle a lot with motor control, which makes a lot of cooking things hard for me. On the other hand, my partner, who has ADHD, struggles with planning. So, I plan out recipes, and do all the simple stirring and measuring, but they do all the chopping and handling raw meat. There are many things like that where we support each other in the things we have difficulty with. Could either of us live entirely on our own? Probably not. But we make it work together, as a unit. Further, many jobs are overwhelming! There are tons of jobs I could never do, particularly retail/customer service. So I found jobs I could do, and focused on a career that played to my strengths and would accommodate the difficulties I have.
Independence can look many different ways. She can live a happy and fulfilling life even if she doesn't achieve every single milestone that society says you should, or achieve it differently than expected.
posted by brook horse at 1:14 PM on June 7, 2020 [10 favorites]
Oh! I just remembered that back when I was talking to that parent group, I gathered some articles I thought might be helpful.
This article talks about how adult outcomes have improved over recent years. This blog post is by an autistic adult and talks about the the changes in diagnosis and how that's affected research. I don't think you'll have access to this study,, but basically it found that the best predictor of success for autistic adults was perceived informal support (e.g. from family and friends). Even further, quality of life could not be predicted from autism severity or any specific behaviors. The only predictor of quality of life was perceived support, which was in fact even more important than actual support. Obviously, this is only correlational, but it suggests that people who know that their family/friends have their back have improved quality of life regardless of what their autism presentation looks like.
posted by brook horse at 1:20 PM on June 7, 2020 [3 favorites]
This article talks about how adult outcomes have improved over recent years. This blog post is by an autistic adult and talks about the the changes in diagnosis and how that's affected research. I don't think you'll have access to this study,, but basically it found that the best predictor of success for autistic adults was perceived informal support (e.g. from family and friends). Even further, quality of life could not be predicted from autism severity or any specific behaviors. The only predictor of quality of life was perceived support, which was in fact even more important than actual support. Obviously, this is only correlational, but it suggests that people who know that their family/friends have their back have improved quality of life regardless of what their autism presentation looks like.
posted by brook horse at 1:20 PM on June 7, 2020 [3 favorites]
Double-dipping here, but I just found the@autchatmod autism chat on Twitter and I saw that a 16-year-old responded. Looks like it happens Sundays at 4 pm Eastern US time and it also looks like a good, content-heavy chat so far.
posted by Sheydem-tants at 1:33 PM on June 7, 2020
posted by Sheydem-tants at 1:33 PM on June 7, 2020
This thread is closed to new comments.
Source: did my master's thesis on autistic people in higher education. Seriously, this is my thing, and if I don't remember to come back to this, send me a message.
posted by brook horse at 8:23 PM on June 5, 2020 [31 favorites]