Most autistic people are high functioning

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Ettina
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01 Mar 2016, 7:10 am

http://abnormaldiversity.blogspot.ca/2016/03/are-most-autistic-people-low.html

You often see this claim in the comment section of news articles about high functioning autism. People say 'Well, they're the lucky few. Most people with autism are low functioning, like my child." And then they go on to describe their child is the most negative light possible.

Which made me wonder - what's the truth? I always figured that high functioning is more common, just like mild cognitive disability is more common than severe cognitive disability, because we're the tail end of a normal spectrum. But does the data back me up on that?

Now, it's important to keep in mind that low functioning autism tends to be diagnosed earlier and more easily than high functioning. So if we look only at already-diagnosed autistic people, low functioning will be over-represented. I will be looking at autism screening studies on a random selection from the general population, finding ones that a) provide some information relevant to functioning level, and b) used a design capable of detecting both extremes of functioning (eg screened children older than toddler-aged, did not select based on a sign of good functioning such as attending mainstream schools). In addition, I will only be looking at studies published in 1990 or later, and they must have found at least 15 autistic people.

Next question is how to define functioning level. I've seen a number of definitions - IQ score, language level, adaptive functioning, even presence or absence of certain behavior problems. It gets complicated. In this analysis, I'll be focusing on IQ score, language level and adaptive functioning, using the following definitions:

High functioning autism (all three of these):
* normal or above average baseline verbal functioning (though may have nonverbal episodes due to overload or other issues)
* normal or above average IQ
* adaptive functioning is mildly impaired or better (note - studies usually find a gap in IQ and adaptive functioning among autistic people with normal IQ)

Low functioning autism (at least two of these):
* baseline minimally verbal or nonverbal (though may use AAC devices)
* IQ score less than 50
* adaptive functioning is moderately to profoundly impaired

Anyone who doesn't meet criteria for either group is medium functioning.

If data is given on only one of these metrics, I'll base my judgments of functioning level on that metric alone, and make it clear that I'm doing so. Unfortunately, I only found three relevant studies, and all reported solely on IQ.

The first study was performed in a South Korean community in 2011. They screened both a random population sample of 7-12 year old children and a high risk sample, but I'll only discuss the general population sample here. They found a prevalence of 2.64% autistic kids in the general population sample, and ascertained 201 children.

In this study, functioning level data was based on IQ. The autistic kids from the general population sample had an average IQ of 98, which is clearly in the normal range. Indeed, an IQ of 98 is not significantly different from the general population average of 100. Only 16% of the children had an IQ less than 70, with the percentage less than 50 not being reported (note - in the general population, 3.5% have an IQ less than 70). Indeed, 12% had IQs over 120, in the high-average to gifted range. Therefore, the proportion of autistic kids in this sample who are high functioning is estimated at 84%.


The next study screened children in two UK communities in 2001. They screened 2.5 to 6.5 year old children. They found a prevalence of .6% and ascertained 97 children.

In this study, functioning level data was based on IQ. They do not report the average IQ, but 25.8% of the children had an IQ (or DQ, for the younger children) less than 70, with the prevalence of IQ less than 50 not being reported. Therefore, the proportion of autistic kids in this sample who are high functioning is estimated at 74.2%.

The last study was performed in Toyota, Japan in 2008. All children were screened for autism at 18 month and 36 month check-ups. They found a prevalence of 1.81% and ascertained 228 autistic children.

In this study, functioning level data was based on IQ. They found that 66.4% had an IQ of 70 or higher, and 16.1% had an IQ of 50 or less. Therefore, the proportion of autistic kids in this sample who are high functioning is estimated at 66.4% and the proportion who are low functioning is estimated at 16.1%.

The three studies all found a very high proportion of high functioning children, with 66-84% of the autistic kids having an IQ over 70. While not all of these children will be high functioning according to my criteria, most probably are. In addition, the older the sample of children, the higher the proportion of high functioning children, suggesting that HFA may be more difficult to diagnose in children under age 4, or that some kids may move from medium-low functioning to high functioning during this period. However, even the Japanese study, which performed its' second screening at 3 years of age, found a majority of children with average IQs.

Only the Japanese study provided data on how many autistic children had an IQ of less than 50, finding 16.1%. However, the other two studies almost certainly had even lower prevalence - particularly the South Korean study, which found 16% with IQs below 70.

Clearly, those commenters are wrong. Descriptions of high functioning autism are actually a far better representation of the majority of autistic people than descriptions of low functioning autism. Despite the scare tactics used by many 'awareness' campaigns, most autistic people have an average IQ. The severe, low functioning end is actually a minority among autistic children.



dcj123
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01 Mar 2016, 7:43 am

Is a low IQ required to be considered low functioning? I ask because I always felt at the very least like someone with not very high functioning as a child and most of my teen years, I out grew out of a lot of it around 17-18. I didn't talk to anyone who wasn't my direct family and I lacked basic theory of mind until I was much older than would be considered normal in my opinion. Could it be possible that maybe Autism has no effect on IQ and that these individuals are just born handicapped and everyone blamed Autism cause nothing else was wrong with him? Like maybe these people are born with low IQ and just happen to have autism too, has anyone even considered that? I rarely hear that stated and it seems like a logic theory to follow. I mean just think of Carly Fleischmann's story, she was pretty low functioning before revealing that she was actually quite intelligent. I doubt her IQ if you took away the more physical aspects of Autism would be low at all.



EzraS
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01 Mar 2016, 9:01 am

Ettina wrote:
http://abnormaldiversity.blogspot.ca/2016/03/are-most-autistic-people-low.html

You often see this claim in the comment section of news articles about high functioning autism. People say 'Well, they're the lucky few. Most people with autism are low functioning, like my child." And then they go on to describe their child is the most negative light possible.


Well you really shouldn't go reading my parents Facebook haha.

Seriously though, that the majority of people diagnosed with autism these days are high functioning is readily known to those who really know anything about autism.

Autism Speaks however has its own agenda.



CockneyRebel
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01 Mar 2016, 1:09 pm

I feel that all types of autism should be recognized.


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redrobin62
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01 Mar 2016, 1:55 pm

Would you believe that something similar to the HFA/LFA paradigm exists in the black community? It's called colorism. That's when some dark skinned blacks despise light skinned blacks because they believe, and they're probably right, that light skinned blacks have it better in life. They site as examples Halle Berry, Beyoncé and, of course, Michael Jackson. This goes back to the halcyon days of house n*gger/yard n*gger.

LFA/HFA are interesting, if contradictory, terms. An LFA may have food, housing, school, 24 hour care, etc because he's institutionalized. I, on the other hand, have been through 30+ jobs but now jobless, never married, had no kids, have no friends, have the social skills of a falling brick, and live in my car. Who's benefitting more from life?



btbnnyr
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01 Mar 2016, 2:27 pm

Image

This IQ graph from cdc seems to show high prevalence of high functioning IQ.
This data is from age 8 children, so many of the borderline may become average or above when they get older and have better communication skills.


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Trogluddite
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01 Mar 2016, 3:39 pm

I struggle with the idea of IQ being a unifying factor for judging "functionality". I can see how it might be useful in an academic context - but there is much more to living a successful and contented life than just academic achievement.

I am capable with language, and did OK at school. But my executive functioning and sensory integration are much worse, and I score highly for alexithymic traits (difficulty identifying and expressing my emotional state.) In terms of integrating myself with the society around me, those traits could be described as highly "dysfunctional" despite my average intellectual ability.

So am I "high-functioning"? It depends entirely on what "function" I'm being expected to perform - in some things, yes, but in other things, much less so.


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Ettina
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03 Mar 2016, 1:16 pm

Regarding criticism of IQ as a metric - I'd have loved to use a more nuanced and multifactorial metric for functioning level, but none of these studies I reviewed gave any data about any functioning metric other than IQ.



Trogluddite
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03 Mar 2016, 7:18 pm

Indeed. One can only work with the data that is available. I can also see how multi-factorial studies would be far more complex to design, administer and make comparable with each other, not to mention the considerable size of the cohort that would be required.


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ZombieBrideXD
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03 Mar 2016, 7:28 pm

I really dont agree with functioning labels, especially after attending a camp of autistic people.

I know i have a lot MORE skills than some of my friends on the spectrum but at some point it doesn't matter. Were all suffering, were all having a hard time, does it really matter Who can talk better than the other when we all cant really make any friends outside of our group, remember to take a shower, tie our shoes, hold down a job on our own and generally function independently without significant support?

I know there are positives to having autism but at this point its like "who has the least aggressive cancer?" or even "who has the most aggressive cancer?"


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B19
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03 Mar 2016, 11:33 pm

The problem with the "my child is the worst real kind parents" is their determination to apply a dichotomy to what is actually a spectrum. They do this deliberately, it seems, to elevate their statements, get attention, and try to legitimise their spurious claim to be privileged authorities on who the 'real' autistic people are (their children). There's something really wrong with this.

Someone with a missing limb has a significant impairment, but you don't get parents of quadriplegiac or paraplegiac offspring, for example, claiming that their disabled children/adult children with multiple paralysed limbs that cause greater impairment are the only genuinely limb impairment. So what is going on re autism?

I think some of it is that the divisor parents are egged on to some extent by Autism Speaks and other groups of the same ilk, who make up the "autism is a tragedy" gang, and that is their ideological position, so they resent capable people on the spectrum who give the lie to their demonising propaganda.

There are other issues with the whole dichotomy of high/low functioning, as we know. Most people (including NTs, including those very parents) are high functioning in some areas of life and not in others. I am low functioning in sports (you better believe it, my sports ability IQ would be zero) and high functioning in others.

As the decades have gone by in my life my distaste for dichotomous thinking has greatly increased. As we are all humans, the whole human race on a spectrum from 'extreme autistic" to "not at all". Dividing people into "low and high" is allied to a lot of the dehumanisation stuff, and drives a lot of the more extreme claims about the worthlessness and cost of autism generally, the 'tragedy' of being a parent of a child on the spectrum.

I am a parent of a child and grandchildren on the spectrum and on the spectrum and would rather cut off my tongue than bleat about their challenges on the internet from the perspective of a martyr-parent/grandparent. They have been the dominant source of joy in my life. The dehumanisers are much louder of voice though than they are great in number, and whether more practical support for their genuine challenges would make a difference, I wonder. If that is what is driving their chorus then it is more understandable, though their dialogue is not typically framed like that. They come across more as child-haters than parents asking for more help to parent well.

The vicious stridency of those who appear to be child-hater-parents does seem to me to somehow echo the strident hatred of the voices of the vindictive ex-spouses who wildly claim all autists are psychopaths, both groups make wild and hateful generalisations because autistic people exist.



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03 Mar 2016, 11:48 pm

B19 wrote:
As the decades have gone by in my life my distaste for dichotomous thinking has greatly increased. As we are all humans, the whole human race on a spectrum from 'extreme autistic" to "not at all". Dividing people into "low and high" is allied to a lot of the dehumanisation stuff, and drives a lot of the more extreme claims about the worthlessness and cost of autism generally, the 'tragedy' of being a parent of a child on the spectrum.

THANK you... As I have been seeking some way to improve my life in the past few months since my diagnosis, I've repeatedly run up against an attitude from mental health professionals: when I ask them what therapies can help me cope better with the continual stressors in my life, I usually hear something along the lines of: if I have a job and a spouse and am self-supporting, what more do I need? Well, yeah, except that I frequently got into trouble at work, I was frequently having serious conflict with my spouse, my commute to work is such a sensory nightmare that I sometimes contemplate throwing myself in front of a train, and we often barely make ends meet. I felt like I was just dragging myself from day to day, dreading each new day, never having the energy to improve my lot. The diagnosis was the first bit of hope I'd had in years. When people throw "high-functioning" labels at me, it feels more like an excuse to refuse me any help. Any failure to succeed was hinted at just being my laziness and poor planning. In reality, I sometimes work 60-80 hour weeks because I can't focus or plan things properly, or are so disorganized I have to fix things on my own time.


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04 Mar 2016, 12:03 am

to me, a "high-functioning" AS subject is one who can for the most part pass for [successfully emulate under most circumstances] NT. I have not come close to meeting that standard except for very short periods of time in very lax circumstances, of which occasions I have been described as "presenting well."



B19
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04 Mar 2016, 12:23 am

I soundly concur with this piece written by one of my autie compatriots:

http://strangeringodzone.blogspot.co.nz ... g%20levels



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04 Mar 2016, 12:57 am

Ettina wrote:
Clearly, those commenters are wrong. Descriptions of high functioning autism are actually a far better representation of the majority of autistic people than descriptions of low functioning autism. Despite the scare tactics used by many 'awareness' campaigns, most autistic people have an average IQ. The severe, low functioning end is actually a minority among autistic children.


And what exactly is your point in bringing this up? are you worried you are being lumped with more severe forms of autism by NT people you interact with?