Integrating autistic people into the community

On the cover of today's NYT, a 8,000+ word feature on Justin Canha, an autistic high school student who has been participating in an intensive program that aims to integrate people with autism (and not just the "high-functioning" kind) into the community. Justin is a talented artist, and is often sweet and charming, but he is also extremely confused by many everyday social interactions. His teacher, Kate Stanton-Paule, has been accompanying him through a multi-year program of daily community routines (shopping, working at part-time jobs), and Amy Harmon's long, well-written piece chronicles the triumphs and failures of the new approach that aims to replace segregation and institutionalization with integration and participation.
Some advocates of “neurodiversity” call this the next civil rights frontier: society, they say, stands to benefit from accepting people whose brains work differently. Opening the workplace to people with autism could harness their sometimes-unusual talents, advocates say, while decreasing costs to families and taxpayers for daytime aides and health care and housing subsidies, estimated at more than $1 million over an adult lifetime.

But such efforts carry their own costs. In this New York City suburb, the school district considered scrapping Ms. Stanton-Paule’s program almost as soon as it began, to save money on the extra teaching assistants who accompanied students to internships, the bank, the gym, the grocery store. Businesses weighed the risks of hiring autistic students who might not automatically grasp standard rules of workplace behavior.

Oblivious to such debates, many autistic high school students are facing the adult world with elevated expectations of their own. Justin, who relied on a one-on-one aide in school, had by age 17 declared his intention to be a “famous animator-illustrator.” He also dreamed of living in his own apartment, a goal he seemed especially devoted to when, say, his mother asked him to walk the dog.

Autistic and Seeking a Place in an Adult World - (Thanks, Scott!)

(Image: A job at a bakery, Fred R. Conrad/The New York Times, used with permission)


  1. “high-functioning” seems to be a very nebulous designation, existing more to comfort parents then anything else.

    1. Those with high-functioning autism can often be superficially indistinguishable from other people. Disregarding the designation “high-functioning” suggests you either don’t know what you’re talking about or are deliberately trolling.

    2. Like many ill-constructed descriptive phrases(and clothing sizes…), it is quite nebulous; but grasps at an underlying reality.

      The severity of autism-type symptoms does run the gamut from ‘more or less profoundly nonfunctional’ to ‘yeah, probably your IT guy’.

      It could be that there are some suckers fooling themselves by wringing the wrong diagnosis out of somebody; but I suspect that reality will correct their mistake soon enough: Given the pretty miserable state of the art in autism treatment, retaining such illusions is most difficult.

      1. It is not nebulous. It is a technical term specific to particular areas of brain studies. Every field of study and work has terms that everyone in the field knows. This is one of them. It means that the person is not entirely crippled by their disorder. It means that, under the right circumstances/with the right help, the person can work, buy a house, raise a family. There are many who can never do these things no matter what. Being highly functional does not mean you are symptom free it just means you can keep on going. I could work when I was suicidal many could not do that. 

    3. turn_self_off – that’s not true – Autism is a spectrum and people with the disorder can range from completely non-verbal and requiring round the clock care and supervision, to people like my son, who works on grade level, is mainstreamed in regular classes for the majority of the school day, and plays an instrument in the band.

      1. Seems my comment is being misunderstood. I am not saying all autists are the same, but what i am saying is that “high-functioning” is not a term defined in any medical sense. What one person or group see as “high-functioning” may be quite different from what another person or group see as such. It more a comfort label used to placate relatives and such then any solid definition of how well the individual will be able to cope with life without assistance.

        1. You have been in therapy where? You have gotten a degree in the subject? Just because you don’t care for the term does not mean it has no real meaning to the disciplines that use it. It may mean a different thing to someone working with people with Autism than it does to a person working with Schizophrenics but they are aware of that. I am pretty sure that it was understandable in context to most people. At the very least it should lead to discussions of what it means and, as in some of the great posts here, what it does mean to them and their charges. I

        2. no, i’d say the condescension that they’re reacting to is still right out there in the open. You might listen to yourself for a second. “comfort label used to placate relatives”? Seriously? Dude?

          1. Yes, seriously. This because of the crazy that is “autism speaks” and how afraid of autism it has made the US (and perhaps UK) public. When parents are ready to kill their own child simply because of one word, shit have really taken a bad turn. Telling those parents that their kid is the “high functioning” kind then puts them at ease, because it allows them to envision a kid with quirks rather then a kid screaming in the corner of a room all day.

    4. “”high-functioning” seems to be a very nebulous designation, existing more to comfort parents then anything else.”

      Actually, the definition of “high-funcitoning” is a lot clearer than any definition of autism. It means the patient is going to enter adulthood on schedule and not be a ward of the state. 

    5. I am mentally ill and have some interpersonal issues that can lead to my collapse. I cannot tolerate bullies particularly when they are going after someone who is weak. I am not weak and advocate for the vulnerable; which brings the bullies after me.  I cannot hide the disdain on my face and enough of this going on and I start sinking into deep depression and anxiety. Eventually I am not able to function. I am also very high-functioning as long as I do not have to deal with interpersonal violence. I have multiple degrees and had very good salaries and benefits. The problem was that intermittent unemployment based on companies refusing to stop bullies drained my savings and investments. Ultimately life and the adverse conditions in the work place led to me having to retire early and live on a very small pension.
      “High-functioning” is not nebulous. It means something specific within the field of brain health. People who study and work in the areas relating to different brains know very well what it means. It often, as in my case a couple of times, means people are denied medical help because they can temporarily do very well. When I taught high school I met lots of kids who were highly intelligent and had an Autism syndrome problem. Brilliant and as dumb as posts. You just have to find what they are interested in and then they are unstoppable if treated well. Same when I was in software development. A great many programmers are geniuses but lack social skills. They simply do not see or hear cues and can be very rude. It was these people who drew me into software development. I felt comfortable with them and the work though I did not go to University to study this. It did not yet exist. I learned programming on a mainframe with punch cards. Some famous high-functioning people with brain issues: Almost every great scientist, mathematician, writer, painter, sculptor, actor, musician, comedian…. Genius and giftedness are often by products of brain disorders. There are some fascinating people with Autism who do very well if they find their subject. Therapy could help with this. People with brains that work differently often are great researchers and analysts because they don’t know how to stop looking until they are satisfied that every little thing has been taken into account. 

  2. Of course some people with high functioning autism can work.  But a lot of them can’t.   My step-son has zero problem-solving ability, poor social skills, reads at a grad student level, has motor-planning issues and impaired motor skills, but can remember anything.   Trying to imagine a job that he could do without paid assistance is an interesting exercise to say the least. 

    1. document sorting may have been one, but these days computers do that for the most part.

      This is one reason why i think autism and aspergers have been more noticable in recent years, those that could pass for “normal” outside of prolonged social interactions found themselves doing jobs that allowed them to work at their own pace away from others. Now however more and more such tasks are automated, as computers do non-social tasks damn well. This, along with a continually increasing pace of life, makes almost any task a problem for us.

      Yep, us. I am a person that have had problems ever since i entered the school system, and have failed to get a proper degree or job since. Only quite recently have i been diagnosed with aspergers, and so can at least to some degree start to make sense of my problems. The major problem is trying to figure out what is a directly related, and what is just a personal quirk that may happen to be amplified by it. Or perhaps some kind of second order issue that have developed because of long term troubles related to not knowing that yes i do not read situations the same way as others in the room.

    2. Perhaps an assistant to a Homicide Detective?  There’s a new TV show, “Unforgettable” about someone with a perfect memory doing police work.  The trailers don’t mention any other social or neurological differences but, believe you me, having even a near-perfect memory by itself puts your whole emotional and social life in a different world. 

      Criminals and con-men often rely on their social skills and emotional cues to make themselves seem innocent or trustworthy.  All such effort is wasted on the Autistic Consulting Detective.Bonus: as a police officer you’re pretty much expected to have no social skills!

      1. but for the beat cop they need to be able to detect the cues that someone is about to blow your brains out with a gun from the glove compartment.

        1. Well, I did say “Consulting Detective”.  Anyway, most outlaws trying to slip a Saturday Night Special out of the glove compartment will try and distract you with a winning smile, some snappy patter and some meaningful eye-contact as they prepare to blow your brains out.  Wouldn’t have any effect at all on an Autistic Traffic Cop clunking though his mental flow-chart on “what to do in a traffic stop”.  Step #11: if a hand moves towards the glove compartment – a) Move towards back of car while drawing own weapon, b) tell hand mover to stop until your gun is pointing at their head c) tell mover to now continue motion.

          Not that we can’t be distracted but who’s going to have the appropriate baseball card or cartoon character action figure ready for just such an emergency?

          1. “Well, I did say “Consulting Detective”.  Anyway, most outlaws trying to slip a Saturday Night Special out of the glove compartment will try and distract you with a winning smile, some snappy patter and some meaningful eye-contact as they prepare to blow your brains out.  Wouldn’t have any effect at all on an Autistic Traffic Cop clunking though his mental flow-chart on “what to do in a traffic stop”.  ”

            Wrong. Completely wrong. Most of us normal folks can detect when someone is trying to pull one over us. Especially when he is trying something as adrenaline-inducing is draw a gun. Autistics, however? Could not spot it if their lives depended on it. If you want an Aspie on the police force, send him to the crime scene investigation teams. Or the forensics lab. They’re not as easily fooled by inanimate things. 

          2. I taught a young man with Asperger’s. He should not have been in a regular school but his father was a teacher in the school and did not want the stigma of mental illness to reflect badly on him. The kid wanted to run a big company. He wanted to be important. I spent time with his team of concerned teachers and counsellors. I suggested that they offer him a shot at cooking instead of academics. I told him that all the great Chefs were men and were highly valued. He jumped at it. Finally, he and his family could see something as possible and desirable. Sometimes that magic can be found and sometimes, alas, it cannot. When he had a horrendous panic attack during the final Social Studies exam I was able to tell him, as I walked with him breathing into a bag, that it did not matter. He could still go into cooking. I would like to have slapped his father upside the head. The worst students are sometimes the most interesting to work with. They have not bought into the system and become clones. They always have something of value if you can see. I wish now that I had gone into special education instead of academic studies.

            I was never bullied in blue collar work or as a teacher. It was the corporate world that brought me low.

          3. most normal folks also don’t enter conversation by saying Wrong, twice, about a snarky playful comment.  Just saying. 

        2. You mean like they blow someone’s brains out because they pull out a candy bar? Cops today are cowards who feel entitled by the blood lust of the populace. If everyone  thinks the mentally different are a danger then that is passed on to cops. When in doubt, kill. I suspect that more murders are committed by the normies than those who are ill. Psychopathology is not the same as other mental illnesses. For one thing, they can actually find the psychopaths if they can do a brain scan. Their brains function differently. They are in their right mind it is just that their right mind is that of a predator. They abound in the business world. The higher up the corporate ladder the more likely to be a psychopath. We cannot just go out and do fMRIs on people due to the cost and the fact that some people with a similar brain have moral fibre and use it for good. 

          1. I think that all depends on where you are, if you are in a crime ridden area then ,they have a reason to be uptight when it comes to hands and instructions. That said screw the po-po for  shooting peoples obviously harmless dogs over nonviolent drug offences and bart shooting unarmed civilians in the back while they were on the grounds. Atleast it is a sign of hope that they are still going through lying about things. I’m not being sarcastic if they aren’t even bothering to lie to the proletariat is when you have an even worse problem. (stop Resisting arrest.)

      2. :-)  He’d like a job like that, but alas he has no problem-solving skills.  Almost every job that exists requires the ability to solve an elementary problem.  You kind of have to see how he is to understand just how impaired he is.  But I maintain some hope that he will continue to grow (he is only 17) and can find a meaningful way to spend his life. 

    3. You have my compassion. The world is not kind to those who are different and, it seems, sees no reason to help the vulnerable. 

  3. I am all for this, but would like to see cannabis involved as a way to help these people manage easier. Too many people are whacked on pills and the studies with pot and autism would augment this idea.

      1. As a likely, but not diagnosed aspie, I find THC to be sort of therapeutic. It reduces social anxiety and makes me fee like I can grok nonverbal communication better. It also makes me stoned, so it’s not exactly the perfect solution for every situation. I wouldn’t recommend it for a vegetative patent, or even for someone prone to throwing tantrums, but it’s just pot.

    1. Russell – I’ve done some searching, and I can’t find a single credible, peer reviewed, published research study that shows that medical marijuana is of any beneficial use to people with autism. There are a couple of anecdotal reports of it helping children with behavioral issues related to their autism, but from what I can fins there have been no “studies with pot and autism” that have been done yet.

      1. He did not say there had been studies. He implied there should be. And it should be done using strains developed over decades to work for specific problems not the ditch weed government hacks use. 

    2. I agree. I was “diagnosed” when I was  in grade 2 with a low grade Aspergers . Pot in small doses does help in my situation. Modafinil is a godsend to me as well.

        1. For me, maybe 2-3 hits off a vaporizer is sufficient to help me get of the slippery slope to being suicidal and hysterical. For maintenance with no meds I would say 2-3 hits 3 or 4 times a day. 
          I use a vaporizer as it does not combust the plant. It just vaporizes the chemicals I want. No lung damage. It takes less than burning it does too so it is more cost effective. I do not know if you can buy these in the US but you can find them on line. They get marketted as incense vaporizers. :)

    3. I agree and I do use weed along with the meds I take because nothing in 40 years has helped as much. My issue with this is only that there are more than one strains and it is next to impossible to get the one needed at any given time. I even went med free for months using just weed. Then I went back to work and the toxic people drove me back to the legal meds and ultimately unemployment again. For depression you need a good sativa mix. For anxiety you need a high indica. When I get one with too much sativa I get really anxious. Mental health anxious not run of the mill.

  4. There is more to this than just autism.  I have about 150 individuals with various physical and intellectual disabilities working with me to assemble our products.  Here’s some of what I’ve learned:

    – Some people are hard working, others are lazy.  This is independent of mental capacity or disability.

    – Intelligence and IQ are just generalisms.  They are not good predictors of job performance.

    – There is a ‘right job’ for everyone.  I have Down’s syndrome employees who are OCD.  They make awesome quality control checkers.  They don’t get bored looking at product all day AND they find every flaw!  I have autistic employees who can power through mundane, repetitive factory work 3x faster than I ever could….and they love it.  But, if the work isn’t lined up and ready when they come in the door, there will be a behavior problem and it isn’t pretty.

    – It takes a lot of training and acclimation for people not accustomed to working with these types of people.  There are a lot of ‘inappropriate’ things that happen in the workplace.  We deal with them professionally.  A lot of non-disabled workers don’t last the first day because of the environment.  I have had salespeople who call on us ask to meet at a different location, or meet outside because it makes them so uncomfortable. 

    -The system (SSI and SS disability) will pay people not to work.  If they find work, they lose their disability payments.  So they stay idle.  Or, they find work elsewhere “under the table” without the labor law protections they need most.

    – I have been punched, hit, and spit on.  My supervisors have dealt with a lot more.  Most employers are not interested in dealing with this kind of thing.

    – Steady work improves lives.  The routine of work helps people grow, improve, and find meaning in their lives.  My supervisors have taken people who have been kicked out of other programs for viscous animal violence and, through work and structure, turned them into productive workers.  It takes a LOT of patience, time, and love.

    1. As a high-function autistic on disability, I’ve had a lot of time to wrestle with this question from the other side. During the dot-com bubble, people with my skills were in such demand that more employers were willing to hire crazy people if they had the skills; now, we’re easy to cast aside because there are plenty of unemployed neurotypicals with the same skills.

      When I was working, I had it brought home to me that however massively productive I was (and I was), that was offset by the negative impact I was having on the neurotypicals around me. I frightened them (at worst), or at the very least made them uncomfortable, and that dragged down their productivity. Neurotypicals “know” that “crazy people shoot up workplaces” – a true sentence as far as it goes. (So do neurotypicals. But try explaining that to a frightened person.) They also know that they lack the skills to be able to predict /which/ crazy people will shoot up their workplace. So they lose a lot of productive time to monitoring the neurodiverse individuals for signs of threatening behavior. And if you look hard enough, you’ll find threatening behavior in any one.

      The longest I lasted at any one employer was 6.5 years. I can point to one single experiment I performed that saved the company around a million and a half dollars; it even got written up in /Infoworld/ at the time. It seems to me that this more than made up for any impaired productivity from the people around me who were uncomfortable with an autistic co-worker. But I have a hard time criticizing any employer who isn’t sure that it will work out that way.

      And then there’s the fairness issue: even before the dot-com bubble burst, I was out of work, probably permanently this time. Why? New manager who believed that the only “fair” way to manage is to treat everybody exactly the same. I think “fairness” means treating everybody the way they need to be treated; he thought that “fairness” meant treating everybody the same; who’s to say which of us is right?

      1. I appreciate your post. I just wanted to chime in on this “New manager who believed that the only “fair” way to manage is to treat everybody exactly the same. I think “fairness” means treating everybody the way they need to be treated; he thought that “fairness” meant treating everybody the same”

        I really hate that, actually. There’s this idea people have that they are absolutely normal and if they just make themselves blind to differences in people it will mean that that everyone is treated equally. But this isn’t true because it assumes that differences in people have no impact and basically forces anyone who is different to either conform (not always possible, particularly with disability) or be shamed and excluded. 

        We all have to work hard to cooperate with other people. That’s hard work. Some people are harder to work with, but I tend to think you have to take everything into account. Anyway, I resonate with that frustration.

      2. Brad Hicks writes, “I think “fairness” means treating everybody the way they need to be treated; he thought that “fairness” meant treating everybody the same; who’s to say which of us is right?”

        I think this an amazing formulation of this question. I may have it tattooed on my forehead when I go to meet people who interact with my daughter. As she moves through her teenage years this is just the kind of thing we’ve heard: We have to treat her just like everyone else, that’s only fair. I get where that comes from. But if that same treatment makes it even harder for her, and thus amplifies her challenges, people get frustrated and angry with her, and she loses access to things that could make her life better. Is that fair?

        I wanted to thank Brad and wish him the best of luck, if he comes back to these comments. I’m struck, as I have been before, by the wisdom of people with autism who manage to see things that neurotypicals often miss. 

        1. In the work force I was denied any right to expect decent behaviour as it was not fair. It was not fair to ask bullies to stop bullying. It was not fair to ask for quiet to work. It was not fair to ask to be seated with my own team. I was paid well and had great benefits. I got emails cursing me out in foul language by a clerical worker several times and nothing was done. She and her cronies laughed at me. I was hired for my expertise  but, ultimately had to leave because of the toxic behaviour. Work place bullying has been made illegal in Australia and the province of Quebec in Canada. I discovered that the best thing to do is keep your head down and look for another job. Most managers turn a blind eye to it and hope the victim just quits. Others say that the victim should just suck it up. Well, some people cannot suck it up and it truly is unfair that the ill are expected to feel and think like the well. It is unfair that the workplace; which could be a haven away from the stresses of life, is the cause of so many very useful and intelligent people ending up in poverty. And they bully for fun. Bullies in school continue to be bullies in the work force and their targets of choice are the vulnerable, the well educated and the highly skilled. 

          1. Too many monkeys, not enough banana’s for us all to be Rockefellers.

            So avoid the people who want to be Rockefellers.

      3. I agree. I was in IT and worked with some seriously odd folks and was considered fairly odd by neuronormals. Love the word. Recently, I noticed that men were using the ability to code to get into the management area. Basically Suits. Coding has become fairly easy over the years and the geniuses are gone. I went into IT for the intelligence and interests of people I could actually identify with. I was bullied into frequent changes of jobs because, as you say, people are nervous around the mentally ill and they cannot stop picking on them. Making accommodations for those with disabilities is only for the obvious ones. Not one company I worked for, and they were big companies, would do a thing to stop the bullying. They encouraged it. They destroy you for fun. 

  5. In my experience, I find it is those who fall within the interstice between ‘high’ and ‘low’ functioning autism who get overlooked by the system.
    My roommate is one such person — highly intelligent and witty, but with an utter deficit of willpower, and thus unable to manage his money, take care of his health, or keep up with many personal-care activities. He can’t even afford the expensive ‘formal’ diagnostic procedures that he missed out on as a child, for the very reason that his autism prevents him from saving up any money to obtain this. Because he appears smart and engaging in conversation, and has, by some miracle, remained employed, he’s deemed high-functioning enough to be on his own without professional involvement, yet, in reality, he’s not able to manage without frequent help from others (read: me). Most people in his situation would probably turn to their parents, but his folks don’t want him much in their lives either, because his eccentricities exceed their own tolerance and coping skills. I literally have no idea what to do, and fear that, if something happens to me, he’ll be living in a box under a bridge somewhere, because no one wants to house a chronically unbathed, internet-addicted hoarder, no matter how intelligent and articulate he is.

    1. Unless you actually know your roommate’s parents well, don’t just assume that their “coping skills” are the problem.  I don’t mind my step-son’s eccentricities, but he has physically assaulted those in his family numerous times.  With weapons.  People outside the home see him as charming.  It is OFTEN the case that those closest to people with autism are victimized when the autistic person is overwhelmed by life.    And I mean victimized in horrible ways.   Usually people outside the home haven’t got a clue how bad it is.

  6. Autism falls under the umbrella term Autism Spectrum Disorders, but I much prefer the other term — Pervasive Developmental Disorder. Doesn’t carry as much baggage as the term Autism and it allows people on the spectrum not to be automatically pigeonholed into someone’s after school special stereotype. (Let the clinicians and welfare people worry about a specific diagnosis.)  With numbers like 1 in 120 kids being on the spectrum it is likely that everyone knows someone who falls somewhere on it. The socially awkward kid everyone made fun of in high school or the shy coworker who never socializes, you just never know who might be battling their inner problems just to fit into the world at large.

    Seriously, if you were to dig deeper into the people surrounding you you’d be amazed. Because of my own experiences I try to be extra kind to those I come across each day who just aren’t dealing well with the world. And I wish others would too.

    1. Apparently, one in 5 Americans has a mental disorder of some kind or another. Many will not get help because of the stigma and many cannot get help because of the cost. My family refused to get me help as a teenager and to this day refuse to acknowledge that I am ill and not pretending to get attention. My mom said I was demon possessed and if I would pray to Jesus believing. Jesus Christ. That helped. 

      In many places, accommodation for the disabled is mandated. This does not include having safe working conditions for the mentally different. What is a safe environment? One in which bullying is not allowed. I don’t understand why supposedly good people think it is acceptable to abuse the ill. I guess they are not good people. You are good people.

  7. Just got back from reading the article. Here’s one way to figure it: if it costs the taxpayers $20k/yr for 6 years to turn Justin from a drain on society to a taxpayer, the taxpayers would be fools not to pay it; it’ll cost a lot more than $20k/yr, and run a lot longer than 6 years, if they don’t.

    Here, on the other hand, is the other way to figure it, the libertarian way: it costs the taxpayers nothing at all to let Justin die, homeless and alone, under a highway overpass before he’s 25. I say this not to mock Justin; had the dot-com bubble not come along, that is what would have happened to me. If Republicans and right-wing Democrats do to SSDI for mental illness what they did to AFDC (which is what I fully expect to happen), it may /yet/ happen to me.

    After the OPEC crisis, Americans had to decide how to afford imported oil, what we were going to export instead that couldn’t be exported by 25 cent/day workers in Indonesia. We decided that we were going to compete with the Indonesians, and the Malaysians, and the Chinese, and so forth, all the places where workers live on basically nothing, while keeping our middle class standard of living, by being the world’s most productive people. And we decided that the only way to be that was to squeeze out the people who weren’t the most productive.

    The day is coming, I fear, and not long from now, where we will decide that the taxes that fund SSDI for the least productive among us are a luxury. We’ll decide that the fact that Americans can afford to pay those tax rates means that Americans are being overpaid. And so, the 25% of us who are unemployed and/or considered unemployable will … what? Be shoveled into the flaming belly of Moloch (or, more to the point, Mammon), as human sacrifices, in hopes that some Confidence Fairy in the sky will notice our devotion and reward us with miraculous workplace productivity?

  8. A great article.  It’s (somewhat) heartening to see that that society is starting to realise that autistic people don’t vanish in a puff of smoke when they turn 19.  You still run across a lot of people involved with the tiny portion of the autistic population that is under thirty who regard it all as a zero-sum game though: because autistic paediatrics exist autistic geriatrics are forbidden!?

  9. I spent time this summer as a teenage assistant for the autistic group at a summer camp that had both average campers and (low-mid functioning) youths with autism. The kids with autism took jobs around camp, and everyone watched out for them. You see the newest campers looking a bit nervous around them first, but they quickly got used to them, and everyone bonded wonderfully.
    I think that they really brought out the best in people, but if not coupled with good awareness programs, they can bring out the worst.

  10. engaging article: great tone, and some much-needed context.I especially enjoyed seeing Justin’s trippy / irreverent animation video:… I’m commenting to give a book recommendation, though: Kobo Abe’s “With the Light: Raising an Autistic Child” is an 8-volume self-help/’seinen’ manga (that is: target audience are women, post-puberty) that shows a nervous and insecure mom dealing with the autism of Hikaru, her first-born son.”With the Light” is slow and a little didactic, and you might need to read two Volumes to get in the right mood / rhythm. But as a resource, I found it incredibly helpful. And as a story, it may start a little wooden… but it grows on you, and gets more and more complex. You learn TONS of stuff about the Japanese school and social security system, and over time, there emerges a big goal for Hikaru’s future life, post-high school: to become a “cheerful, working adult”.Will he make it? I’m not sure: I’m only in Volume 6 of 8, and tragically, the creator of the Manga died in 2009, before she was able to finish her work.Still: I cannot recommend this enough. Have a look: The US translation is solid, and there are lots of annotations plus some additional essays / resources in the back of each volume.

  11. One of the things that is so hard to explain to people is that we, as a society, have to make decisions on how we cover the costs of supports for people with disabilities; whether they are born that way, come by it by accident, or as a result of fighting one of America’s perpetual wars, or get there as a simple act of aging. We all, as a friend once pointed out, are only temporarily “able bodied”. In the past the most cost efficient method was to basically put the disabled in prisons for the “crime” of being abnormal. Institutions held large numbers of people who had minimal care, and minimal protections from physical and sexual assault. These were very cost efficient, as long as society looked the other way, and ignored the level of misery we imposed on both the individuals and on the families who were often told they did not have any option other than institutionalizaiton for their child. We’ve made significant progress for people in many states, where “institutions” (such a disarming name for “prison for people who scare me or make me uncomfortable.”) have been closed and people moved into community based care facilities. While there are still many abuses in these, they are nothing on the order of what happened in every underfunded state “Home for the Feeble Minded”, or “State Insane Asylum”. Someone mentioned one in five people having special needs, but that’s more anecdotal than accurate. The real number is still frightening: with one in ten either having some special needs, or are part of a family supporting an individual with special needs. Given these numbers, it’s surprising that conservative politicians are getting traction with their calls to reduce or eliminate Medicaid. Without Federal funding, the burden falls on individual families to provide support, more often beyond what they are able to provide. People languish, die early, and suffer at levels that are unimaginable to those who have no first hand experience with this. The choices are our as a society: let them die, pretend that their families are responsible (even if they have no family), or maintain them with the absolute minimal care needed to keep them alive regardless of the suffering as long as it’s kept it out of sight), ORfund early intervention, and supports designed to make the person as independent as possible. This result in the individual with disabilities needing less expensive supports later, but it definitely costs more than assigning them to a hellish existence where they are essentially fed a bit, then watered, wiped and raped daily or as needed. The choice is ours as a society, and we have proven to be up to it, except in the periods when greed takes over and we get the “I’ve got mine Jack so it sucks to be you if you don’t.” mentality that seems to be permeating our ever more Christian-in-espousal, but less christian-by-performance society. I will never understand why people who oppose abortions don’t also oppose pain and suffering for disadvantaged children and adults after they are born, for surely those who need supports after they are born are as deserving as each fetus the Christian right seeks to protect.

  12. people on the autism spectrum are quite often annoying to those who are not. As long as there are “normal” people who think they have a right to not be made uncomfortable, then aspies and autists are going to be off the radar. Overcoming bigotry against non-whites and non-males was just a warm up, now we need to overcome bigotry against people who – at first glance- are merely annoying.

     Look at the bright side- a workplace that refuses to bully these folks, won’t bully anyone else else either. 

  13. As someone who suffers on the mild end of the spectrum I found the article heartwarming, but also disheartening for me personally, in a way that relates to much of the previous discussions here in the comments.

    The guy, Justin, has helpers getting him jobs and opportunities, and people in every facet of his life give him extra accommodation to help him get by. Those of us who are not so obviously different, such as myself and (presumably) sandyvc, do not get any of this help. I understand, there’s no budget for such a far-reaching support system, nor do I expect or even want such help.

    What I want instead, like sandyvc and others have been discussing, is for “normal” people to understand – in the same way that people understand and try to help out with Justin. It should be much easier for people to do this since we’re not that different, but apparently it isn’t – unless you’re very obviously different like Justin, then you get treated the same as everyone else and if that doesn’t work for you, you’re fucked.

    1. And why i sometimes wish it came with some kind of rash, odd skin color, or some other visually distinct symptom.

  14. It sounds like a lot of people here are struggling to arrive at the concept of “reasonable accommodation.”  If you can do your job with a reasonable modification to it, you’re entitled to it according to the ADA.  Unfortunately, you need to find a way to enforce this.   If you can’t get a job in the first place, you’re stuck in square one for the conceivable future.  

  15. Remember “All Quiet on the Western Front?” Where the German soldiers vied for the coveted doctor’s note, that said they were suffering battlefield trauma, and thus could get away with any anti-social behavior they could think up?

    Justin’s story was inspiring, but I’d really like to know where that fine line between “high-functioning autistic” and “creepy weirdo” is. Are we labeling entire generations of children with a box that says we expect less of them? That they don’t have to consider other people’s feelings, and don’t have to be responsible for themselves. This isn’t a “disorder,” it’s a personality trait that delays maturity, and making it a “disorder” absolves the individual from responsibility for achieving it.

    1. Eyebeam? You’re wrong. Look, I hate to put it that bluntly, I know it’s counter-productive, but I can’t say it any more nicely and still make my point: you are wrong, you do not know what you’re talking about.

      I’m a 51 year old guy with a BS in Math/Comp Sci who has bounced back and forth between $50k/yr jobs and actual homelessness, over one issue: every time I get transferred from a disability-friendly manager to a “treat everybody the same way” manager, I get fired, and there is no such thing, so far as I can tell, as a disability-friendly job interviewer within 100 miles of here. So after each time I’ve gotten fired, even when the economy was going better than this, I’ve spent anywhere from a year to three years unemployed until someone I knew on the inside of a company was able to find a disability-friendly manager who was willing to pull strings, from the inside, to over-rule human resources and hire me.

      What do I get fired for, really, every single time? Inability to “mind read,” which is just a code word for this: social interaction depends on the ability to process, in real time, twitches of body language and facial expression, plus changes in pitch and volume of voice, that last anywhere from 1/5th of a second to a couple of seconds. Most human beings can do this instinctively; evolution has equipped them, like most mammals, with neurocircuitry that sits between the optical cortex and the hindbrain and which does this work for them on a pre-conscious level. I don’t have that circuitry. I have to do this consciously, by paying minute attention.

      After tens of thousands of dollars of intensive coaching, and 51 years of practice, I can do the best imitation of a neurotypical that I will ever be able to do … so long as my concentration is on that, and only that. Ask me to do thought-intensive work /at the same time?/ Never going to happen.

      No, really, I mean never.

      I’m 51 years old; I am not going to mature out of this. I do not lack motivation; if the first bout of homelessness didn’t do it, I certainly was highly motivated by the 3rd one, and I know that at my age, my 4th bout will probably kill me; do you think that’s not motivation enough? Even if it weren’t, being on disability, while it is keeping me alive, is the most boring job I’ve ever had; I am not faking this out of laziness, and contrary to mythology, history shows that very few people would, certainly not at the price I’ve paid for it.

      Tell people like me to just “grow out of it and get a job” is about as useful as telling a chronic depressive to cheer up, or telling a paraplegic to get up and walk it off.

Comments are closed.