Tuesday, October 27, 2009

Unemployment Among Adult Autistics in the UK

I've previously criticized estimates of the "costs of autism" to society. The whole rationale of coming up with such estimates is objectionable to begin with, but I've also criticized what appear to be exaggerations in the figures that form the basis of these analyses.

One key component of such estimates is "lost productivity" due to lack of employment and related metrics. I've pointed out that old data on the employment rate of adult autistics no longer applies. If you want to come up with cost estimates based on an ASD prevalence of 0.6% or 1%, you have to know the employment rate that corresponds to the ASD criteria that results in said prevalence. You can't just look at diagnosed adult autistics, and hope they are representative of all adult autistics, especially considering autism has been very much under-recognized in the past.

Of course, data that addresses this objection was not available until recently. That did not stop me from coming up with a guesstimate, though. I suggested that perhaps 70% of autistic children diagnosed today might end up being employable a generation from now.

I think it was clear in the blog post that this was a rough estimate extrapolated from other trends. The estimate, predictably, was met with accusations that I trivialize the challenges of autistics and so forth, specifically from Jon Mitchell. It seems that whenever I do some math or look up figures in the literature, I'm automatically engaging in trivialization.

Jon was of course "mystified" as to how I came up with the 70% figure, and implied that it's unbelievably high. Whenever he wants to snipe at me, this is the one thing Jon likes to bring up. He also proclaims I'm "one of the more prominent ND bloggers" so he gets to criticize not just me, but he probably thinks he's criticizing the entire neurodiversity movement in the process.

Readers are probably aware by now that the UK National Health Service recently released its first report on a prevalence study of autism in adults living in private households. The report includes some data on employment, but all the report says about it is this:
No significant variation in rate of ASD by economic activity status was found.

That's interesting enough by itself, but let's look at data from Table 2.4. There are 3 groups of persons considered in the study: Those in employment, those who are unemployed, and those who are economically inactive. The following is the prevalence of ASD in each group:

In employment: 0.9%
Unemployed: 1.6%
Economically inactive: 1.5%


The report also gives a "base" population, which consists of all persons from phase 1 who had been assigned a near-zero probability of ASD. You may recall that 7461 respondents were interviewed in phase 1. The base population consists of only 5998 persons, divided as follows:

In employment: 4492
Unemployed: 291
Economically inactive: 1215


The base population is not exactly representative of the general population (it's more "non-autistic" than normal if you will) but it will have to do. I will use it to estimate rates of employment and unemployment in autistics and non-autistics, as shown in the following table.

In EmploymentUnemployedEconomically Inactive
Autistics64%7%29%
Non-Autistics75%5%20%

There are some differences, but the study authors didn't find them to be statistically significant. In any case, it would seem that adult autistics who live in private households across the UK are largely productive individuals who contribute to the economy in a manner similar to their non-autistic peers.

Of course, this particular report doesn't tell us about autistics who live in "communal establishments." I've suggested that when all is said and done, pooled prevalence of ASD might turn out to be around 1.3%. Even if all autistics who live in communal establishments are considered unemployed, total unemployment among autistics might be around 35%.

18 comments:

  1. Joseph: In just perusing your post and that study, I can see one major flaw of your analysis. You don't adjust for the high ratios of autistic men to women versus the parity between non-autistic men and women. The figure you gave was for all adults rather than the men only figure in which the percentage of economic activity is 3.3%. Your analysis assumes there are just as many ASD males than females. The survey you cite found the opposite.

    A much more valid figure would be to compare unemployment among non-autistic men only versus autistic men. Though I can't do your math following your logic, I am sure that the adjusted unemployment rate among autistics would be much higher. Maybe like more than 75%, as opposed to your 35% using your flawed figures. Again, this seems like an underestimate. Of course, as you stated, the study just surveyed the ASD people who lived in a house and not in an institutional setting which would make the true unemployment rate even higher.

    Also your statement that autistics are contributing to the economy in the same manner as nonautistics neglects to take into account the qualitative aspects of the jobs. Far more autistics will be ditchdiggers rather than doctors or lawyers and vice versa among the nonautistics.

    I am still mystified as to where your 70% projection comes from. As far as I can tell, it is based on California DDS numbers of the percentage of autistics who are nonretarded, which as you correctly state is much higher than in the past, now that there is new diagnostic criteria. Of course that may be an overestimation as this does not include 3 year olds in the system whose intelligence might not be testable.

    But assuming 70% of autistics are nonretarded, then as far as I can tell the only basis for your projections is a conmpletely full employment rate among nonretarded autistics. Based on my own personal experience and many others whom I have known, having an ASD with average or above average intelligence does not stop a person on the spectrum from being impaired in their employment opportunities.

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  2. @Jon: Your objection brings up a rather important although tangential point.

    Would it be valuable and ethical to come up with an estimate of the costs of femaleness to society? Why would that be a bad thing?

    Now, it is true that the men-only data is a little different. Let me figure it out.

    The base population for men is 2161 (in employment) + 247 (unemployed) + 520 (economically inactive).

    Note that most unemployed persons are men.

    The corresponding ASD prevalences are 1.6%, 1.9% and 3.3%. (I'm not sure why they put 1.9% in brackets.)

    Using the same analysis I used in the post (which assumes the base population is roughly equivalent to the general population), I come up with the following rates for autistic men vs. non-autistic men:

    In employment: 61% vs. 74%
    Unemployed: 8% vs. 8%
    Economically inactive: 30% vs. 18%

    So unemployment is basically the same for autistic men.

    Employment is lower, in account that more autistic men are considered economically inactive. I could only speculate why autistic men are considered economically inactive in relatively large numbers.

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  3. But assuming 70% of autistics are nonretarded, then as far as I can tell the only basis for your projections is a conmpletely full employment rate among nonretarded autistics

    It might seem I did that, and it might work out roughly like that in reality, but I didn't need to make that assumption.

    Basically, I had an old data point that said 25% of autistic adults were employed. (I can probably find it, but I don't have the reference off hand.)

    I also knew that back when these autistics were children about 75% of autistics were typically found to have intellectual disability.

    Now, it's possible that not all HFAs were employed, but somehow they still managed to pull a 25% rate of employment, perhaps with the help of a portion of LFAs.

    So what if the situation is reversed? You have 75% HFAs and 25% LFAs. Is a rate of employment of 70% far fetched? I don't think so.

    Of course, I didn't claim any of these figures are completely accurate or anything like that. The general argument turned out to be correct, did it not?

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  4. I'm sure there are jobs that Jonathan could do, and even support himself, however, these would be "beneath his station in life", as he's accustomed to "the good life" that his mother has provided him. Why, he even has a college education, and so couldn't possibly lower himself to manual labor, as I have had to do. I think there are many of us who would do any sort of work, so that they could be independent, and not rely on the the charity of family, or have to jump though onerous Federal hoops to get or stay on the miserable pittance that SSD or SSDI grants.

    Having a job enables us to maintain some sort of self-esteem, which unfortunately, is an alien concept to Jonathan.

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  5. One caveat in any projection of what the employment of autistic children will be like a generation from now, based on this data, is that most of the autistic adults located by the NHS were presumably undiagnosed.

    I wonder if the diagnosis of autism itself will turn into a self-fulfilling prophecy of sorts.

    There might be a lot more autistics like Jon, who know they are autistic, and who in turn blame essentially everything that happens to them on autism, while feeling completely helpless about it.

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  6. Not everyone can do any sort of work. Some get into a line of work and then find out that line of work doesn't last for them.

    Jon isn't my favorite person, but I take it that Clay assumes everyone has the physical fitness of a mule. I for one don't have that level of fitness any more, have been struggling with career work for more than 24 years, and probably need some of the supports that are only available after those onerous processes. It's the onerous process that's keeping me from going through all the paperwork to get help, or the career disability insurance started.

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  7. @Patrick - I was severely malnourished for the period of time between 10 and 15 years of age. I'm sure I didn't reach my growth potential, and was 5'9" and 140 to 145 most of my working life. At age 23, I had a major accident in a fuel truck, and because my jaw was broken in two places, my teeth were wired shut. I lost 30 lbs while in the hospital for 3 weeks, and it took years to get back up to 140. I worked all the while, except for the 5 months I was off work recuperating.

    In addition to that, I've always had congenital rotoscoliosis, a condition that conveniently let me escape from the Navy when I found out about it. It often causes me back pain, and I can only do the dishes for 5 minutes at the most before it starts to really hurt.

    I worked because I had to, and had a family to support. So, no mule here.

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  8. My view is that things like SSD are necessary to have. If you can work and you need to work, you should. But we could all get into a situation eventually where we need assistance.

    Those who live in the first world should be thankful that things like SSD exist. Who knows how disabled people manage in the third world. Most of them probably just die.

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  9. I hear you Clay. But I won't come up with a list of my physical problems to try and match yours, mine probably seem minor problems in comparison.

    I hear you about the third world folks too Joseph. There's probably a lot of death related to disability problems there, if not outright ancient greek custom (filicide, rumor?) that churns the western stomach.

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  10. @Joseph - I agree that SSD and SSDI are necessary to have, my objection is only that they are so difficult to get on. Their first response is usually flat-out refusal, and then it can take a year to get a hearing. Best to have an attorney at that point, because they'll throw every "Catch 22" in the book at you.

    I talked with a guy once who was about 60. Ten years earlier, he'd had a triple by-pass operation, and he could no longer work at his former occupation, (bricklayer). All the Docs said he could no longer work, and advised him not to. He had to move in with his daughter and her family and be dependent on them for six years, until he finally won his case with SSDI.

    Yeah, he finally won, and was paid retroactively, but it had caused considerable problems for his daughter and her family. Um, did I mention that he was Black, and they might have thought they could just intimidate him with their authority, or maybe they thought that if they could just put him off long enough...

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  11. PS. And if you start off disabled, and can't get any work, then SSI is only about $450 per month. That doesn't hardly pay the rent, much less cover anything else. Pretty much leaves you stuck in your parents' home, in perpetuity, yes?

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  12. If one is lucky enough to have parents or relatives that are able or willing to help. (re, Yes?)

    I saw the first flat out denial from Social Security already, and I am wondering to a degree if that refusal was legal. (Hence yes too, the part you mention about bringing a lawyer into it has crossed my mind.)

    I'm not surprised to hear the story about the guy who wasn't given benefits for 6 years, more witness to the red tape nightmare and legal morass.

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  13. I have heard stories about the difficulties of getting on SSI/SSD but that wasn't the case for me. Although my situation my have mitigated things for me. At the time I applied, I was homeless and pregnant. My work history, such as it was, consisted of a decade-long string of minimum-age jobs, each held an average of 2 weeks with none lasting a full month. I also had a history of psychiatric care, starting at age 5 and continuing for the duration of time I was under my parents' care, but no diagnosis (I was never told a diagnosis and enough time had passed that the doctors I saw as a child no longer had records of me.)

    I had to call my caseworker periodically to keep track of my case since I didn't have an address. Within a couple of months, I was notified that I had been awarded disability.

    Sixteen years later, I'm still on the disability, but I have used it as a stepping stone and am now working on a doctorate degree. I currently get $600/month, 2/3 of which goes immediately to rent. I am only able to thrive because I supplement my disability money with student loans. Before going back to school, I was severely malnourished from living on only ramen noodles and ended up in the hospital for a week as a result. If I weren't in school, I would have to petition for section 8 housing and some of the other supplements that people in my situation are eligible for.

    I just want to thank you, Joseph, for the research and study you share through your blog. Before reading this post today, I had been operating under the 75% unemployed statistic which had been the only one I had found to date. I had also read that a greater number of higher-functioning autistics than lower-functioning are unemployed (which made sense to me since someone with a much higher level of impairment is more likely to be out of the job market altogether, thus not counting as unemployed, even if they have no job.)

    The 75% statistic was, naturally, disheartening but it seemed realistic to me because of my own lifelong struggles as a very intelligent person with a strong work ethic and willing to do any kind of work but unable to hold a job and unable to figure out why I kept failing.

    But as a graduate student, getting closer and closer to graduation every semester, I was really starting to sweat that 75% statistic and have been wondering for quite some time now what will become of me after I graduate. Your statistics look a lot more reassuring to me and make me feel a lot more like I have a fighting chance to use this education I'm currently getting and secure a job that plays to my real strengths and thus a job that I will have a chance of holding on to long term.

    I just wish there were more/better services for adults on the spectrum! There's a business in town that works with people on the spectrum of all ages and, among other things, works on increasing employability. I would so love to get help from them but they are very expensive and don't accept medicaid. And they are the only agency in town that will work in any capacity with non-retarded adults on the spectrum.

    I've tried regular psychotherapists, but whatever it is they're trained to do, it really "breaks" me. I end up sobbing, filled with anxiety, depressed and hopeless . . . and that's just after one visit. It gets worse from there. And I can't even try to work with one of them to figure out what's going wrong because I don't know what it is that they do to me.

    I wish more people would read your blog, Joseph, because then they would realize just how many of us adult autistics there really are and maybe there'd be a little more help for us out here treading water, wanting to contribute to society and lacking any mentors or assistance to help actualize our potentials.

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  14. @Sparrow Rose: Note that the 75% statistic might be accurate for diagnosed autistics in the UK. Of course, it's not necessarily applicable to future diagnosed autistics.

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  15. Would that count people diagnosed as an adult? Because I wasn't diagnosed until age 34. (But it's pretty clear cut when considering my mother's memories of my childhood. I'm guessing the reason I didn't get diagnosed in the 1960s was because I was very verbal and could read newspapers out loud when asked. I didn't fit the criteria of the era as far as being incommunicative, staring off into space and non-responsive, etc.)

    So would that put me in the 75% unemployment bracket anyway? (Not that it's enough to make me give up hope because I can always shoot for being part of that 25%, but I think it's better to come at the situation with a clear and realistic idea of what I'm up against.)

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  16. The NAS conducted some surveys which obviously must have included only diagnosed autistic adults. It's not clear what the recruitment method was. The report is here.

    They found that 66% of adults didn't have any employment at all, including volunteer work.

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  17. Thank you. I'm about half-way through reading it so far. It is helpful to me in getting a better grasp of where I stand and what I can expect to have to work against upon graduation.

    It is also comforting and validating to read things like "A person with an autism spectrum condition often comes over with an uneven range of skills. If a person is seemingly clever with words, as I seem to be, it's assumed they can do stuff for themselves." and "A common misunderstanding is that people with autism who have an average or above average IQ do not experience considerable difficulties because of their autism. This is not the case: even if an adult with autism does not have an accompanying learning disability, they may still have very complex needs and can require intensive support. For example, an individual might be academically very able but may struggle to manage straightforward everyday tasks."

    It lets me know that I'm not alone in coming up against that barrier (the "but you look perfect fine to me" barrier) and that some officials (even if it's in a different country from my own) are beginning to realize this problem.

    I'm off to read the second half of the report now, but thank you again for letting me know about it. Right now, every bit of information helps me to stay focused on problem solving for the future rather than getting mired in anxiety about the unknown that is to come after I finish my degree.

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