Lifespan of autistic people?

June 6, 2011 11:42 AM

Do autistic people have shorter life expectancies ?

I am wondering if something directly or closely related to the state of autism shortens the lifespan. The answer has been unclear online stating that they are more prone to accidents etc. However, my friend and I were discussing how we dont see that many older autistic individuals in society?

posted by JJkiss to health & fitness (10 answers total)

However, my friend and I were discussing how we dont see that many older autistic individuals in society?

They'd have to be rather high-functioning for you to see them-- autistic people unable to provide self-care from an era that would qualify them as elderly are probably institutionalized. Some of them will have been for many, many years as that was the generally prescribed course of action for the parents of autistic children until rather recently. If they weren't institutionalized as children/young adults they probably are now as their family caregivers are likely dead or enfeebled with age.

A relative of mine deals with a group of state hospitals in a pharmaceutical capacity and visits the facilities regularly. To hear her tell it, a high percentage of the patients are autistic and many of them older people as well.

I would expect that this does also contribute to an overall shorter life expectancy by nature of the the life of someone who is institutionalized.
posted by Mayor Curley at 11:58 AM on June 6, 2011

N = 1, but I have a severely autistic (i.e., completely nonverbal) uncle who is around 60 and has spent his entire adult life under some form of supervision (family, then institutional). You haven't seen him around in society because he doesn't live in it. He's quite healthy otherwise, and as far as I know is going to live as long as any other person.
posted by theodolite at 12:08 PM on June 6, 2011

It may vary by country but I know recently in the UK it was in the news that people with mental health problems (including autism iirc) have shorter lifespans.

I suspect though that the reason you don't see many older autistic people is multi-faceted. Firstly, autism diagnosis has increased massively compared to say 50 years ago, people with mild cases would not necessarily ever have received a diagnosis. Secondly, older persons with autism severe enough to have been diagnosed 50+ years ago would be unlikely to be out and about where you could see/interact with them.

You may find this article interesting.
posted by missmagenta at 12:09 PM on June 6, 2011

It is a difficult question to answer because autism is still a relatively new diagnosis and the criteria are evolving over time. However, you might be interested to know that the very first person given a diagnosis of autism is still going strong at age 77.
posted by TedW at 12:11 PM on June 6, 2011 [1 favorite]

I don't know the actual statistics on this, but when I was taking care of mentally retarded and autistic adults I was told that their number one killer was constipation. People who do not have the ability to care for themselves or communicate about their discomfort die of causes that would not kill those that are not in the same boat. Not to be crass, but people with functional communication and not dependent on others for their personal welfare suffering from a minor infection or a bowel obstruction can treat the problems or seek help. When none of the overtaxed caretakers keeps up with the last time John used the toilet or that Sue's period has gone on for way longer than it should have, John and Sue can die.
posted by The 10th Regiment of Foot at 12:26 PM on June 6, 2011

Because I work in autism research, I know a fair number of older adults with autism. Most of them spent most of their life in and out of various institutions and treatment programs, either with no diagnosis or misdiagnosed with schizophrenia. Some of them are pretty high-functioning and able to be out and about in the world - but almost without exception, they do so in a highly structured way.

They tend to live in care communities, as their family caregivers have all passed away. They tend not to have jobs where you might bump into them - the support structures weren't in place at the time to get them job training or help navigating the social world, they've probably never had jobs. They get out and about fairly regularly and may be fairly well able to navigate public transit on their own, so they take the bus around town. But they mostly go to visit the same four or five places to visit people they know - institutions they've stayed at or people who used to be their caseworkers or research programs like ours where they've been coming to visit for 20 years, so they know exactly who will be there and what to expect and there won't be any surprises. You're not going to bump into them just hanging out at Starbucks trying to decide what to do that afternoon. If you're not already in their very circumscribed social circle, you're not going to meet them unless you work with autism in some way, or work at one of the three restaurants they're comfortable going to, or ride the bus with them.

I have not seen specific data on lifespan, but a PubMed search for "autism life expectancy" turns up a couple of things that may be useful. You might look at this article or this one
posted by Stacey at 1:08 PM on June 6, 2011 [2 favorites]

Also, I'm not sure about where you are from, but "normalization" really began in earnest in the United States in the 1980s due largely to infrastructure development. This means that people with disabilities older than, say, their forties were for the large part placed in more segregated, institutional dormatories and schools (in some places even despite the wishes of family). This translates into their current socialization as well. If you grew up in an institution, chances are you aren't going to simply slide into everyday society like someone who grew up in an ordinary home and school. It may also mean that you still live in a group home rather than a residence. Some people that are the products of institutions just aren't able to handle public life very well. This could certainly contribute to your observation that you don't see older people with autism
posted by The 10th Regiment of Foot at 1:20 PM on June 6, 2011

However, my friend and I were discussing how we dont see that many older autistic individuals in society?

What everyone above has said is more or less correct, but consider also the following:

Folks with cases severe enough to prevent them from having jobs don't have much money, as benefits are meager. This affects their day-to-day experience in such a way as to limit or change a lot of the contact with society that you take for granted.

They're not out and about at restaurants and shops, unless they're supervised, and even then, that's a real treat. If you see a group home outing at the mall, they're not really shopping so much as just getting out and trying to be socially engaged on some level. They're not at the movies; if they are, it's the less expensive matinee. They're not at the bookstore; they're at the library, during the day, when you don't visit. They don't drive, so they're not standing in line with you at the DMV.

In other words, you're not seeing them because they're not visiting the same places you are, when you visit them, for the same purposes you visit them.

These same folks tend to live in less expensive areas of the country. They're not commuting from chic neighborhoods to jobs in downtown Manhattan, so to speak. Group homes are often at the fringes, where real estate is cheap and where zoning allows group homes to exist at all.
posted by Cool Papa Bell at 3:08 PM on June 6, 2011

Yes, according to this study. From the second paragraph of the introduction:

A recent report on comparative mortality in California (Shavelle & Strauss, 1998) confirmed the speculation of Gillberg (1991) that persons with autism have reduced life expectancy. Data from the extensive California developmental disabilities registry, with 11,347 autistic individuals, clearly showed that persons with autism are subject to increased mortality risk, with an overall mortality ratio of 213% (mortality ratio, MR, is observed deaths compared with expected deaths converted to a percentage). The MR for females (490%) was notably higher than that for males (167%). The life expectancy of a 5-year-old in that cohort was reduced by 6.1 years for boys and 12.3 years for girls.

posted by kprincehouse at 4:56 PM on June 6, 2011

_{Ah, Stacey beat me to it, hours and hours ago.}
posted by kprincehouse at 5:00 PM on June 6, 2011