Monday, July 12, 2010

The Autism Spectrum Dichotomy

One thing that I am constantly reminded of when I read about autism is how very different autism looks in different people. There are some at the extremely high end of the spectrum, who you would have a hard time telling apart from an average person, and then there are those are the extremely low functioning end, who have a hard time doing pretty much everything. And then there is everybody in between.

One of the ways that we attempt to deal with this difference is by using functioning labels, as in that person is high-functioning or low-functioning. Some people object to this use of labels but in general, it helps to give you an idea of what type of autism we are talking about. I find it helps to remember that a person is not limited to being the label but rather is capable of functioning better (or worse) depending on the exact situation that we are talking about.

The important thing is that people who are high-functioning are very different from ones who are low-functioning and need very different things.

It is my opinion that there are more children at the lower functioning side than the higher functioning side, and data from the CDC seems to bear this out. According to the CDC, approximately 41% of children with autism have an IQ less than 70 which means that 41% of children with autism have an intellectual disability in addition to autism. Also according to the CDC, about 40% of children with autism do not talk at all. There are other statistics available from a variety of sources, but as they are equally depressing, I am not going to point them out.  In general, children with an intellectual disability or who can't talk would be considered lower-functioning.

On the flip side you have adults with autism who are just slightly socially quirky and like to claim that autism gives them special intellectual gifts. They also like to diagnosis important historical figures with autism and pretend it was their autism that made them important.  Or they like to serve on governmental committees and pontificate about what people with autism need.

To give a more concrete example, below is the difference between low and high functioning.

From Astroturf, I mean "The Thinking Person's Guide to Autism" where "informed decisions are made with love", we have an adult talking about his Aspergers -
When I was diagnosed with Asperger’s syndrome in 2003 at the age of 25, I had already pretty much given up hope of ever finding and getting a job that was right for me. All I had to show for my job skills was a high school diploma with a lousy grade average, and a few exams which I barely passed when I tried studying to become a school teacher and when I tried getting a bachelor degree in English at the university, neither of which I finished.
You can read the rest at the link above. It is pretty standard stuff from someone who didn't find out until they had a form of autism until later in life and whose main issues are social.

On the other side, we have this piece from the Center for Autism & Related Disorders (CARD), that talks about attempting to teach children how to deal with an unknown question -
In a recent study, Ingvarsson and Hollobaugh effectively taught four children with autism spectrum disorders (ASD) to use the phrase “I don’t know, please tell me” in response to unknown questions. ...
Two of the participants quickly learned the verbal response and were able to generalize the response across various questions. The other two participants required implementation of individualized behavioral techniques in order to learn and generalize the response.
You are reading it right, there are children with autism who don't know what to do when asked an unknown question and have to be taught (and those are the ones that can talk).  Some researchers have figured out a way to teach children who would otherwise have no response to an unknown question what to do.  If you are unfamiliar with ABA and how it is used to teach children with autism, let me just say that this is a little bit of a feat.

The thing that jumps out at me is the difference between these two scenarios. One one hand, we have someone who was able to function well enough to graduate high school and make an attempt at college but needed assistance finding and holding a job (which is, sadly, a common problem for a lot of high school graduates in this country).  But on the other hand we have children who don't know how to respond to a simple question and need to be taught a canned response.

Both would have autism but both are extremely different from each other.

And yet, one of these groups feels the need to speak on the behalf of the other and say what they do and don't need. One of these groups feels they have the right to challenge what parents are attempting to do to help their children.

So the next time you read something about autism, just remember - we aren't all talking about the same autism. Your form of autism and what you need might be quite different than what my children need.


  1. You are so right, and it can vary between family members, which you probably know all too well. I notice this between my mother, my brother, my son before diet and my son after. Each is so different. My son pre-diet was autistic. My son post-diet is mild PDD but there are still things to work on, but a completely different child than before (Dr said he's really an aspie, but nonverbal pre-diet makes him pdd by default)(I'll take apsie/mild pdd over autism any day). My brother appears to be low functioning aspie or high functioning autism. My mother has some oddities that appear to be ASD. She is friendly but doesn't get alot of social queues. She also doesn't process everything she hears but can learn anything by reading. Each clearly is on the spectrum, but so different.
    We run across folks in the special Ed field that cling to what they learned autism was in school and are practically useless dealing with the milder forms. You realize how easy it is to brainwash yourself when you learn something and don't continue to keep up with the latest.

  2. Autism does look very different between people, even when two of those people are identical twins. My twin daughters function on about the same level but their social skills and rigidities/stims are quite different from one another. And my youngest daughter is quite different from her sisters and is much higher functioning.

    If three kids that presumably all share an underlying cause have such different needs, how can we generalize between unrelated individuals?

    As for Special Ed, that is always a trip. We have a semi-standard speech that we give to all of the new people that work with the kids to make sure that they approach the problem correctly. The funny thing about my girls is that, for being as afflicted as they are, they will walk all over their therapists if they have a half a chance.

    There are few things funnier in life than watching a moderately autistic, semi-verbal 5 year old outsmart and out maneuver her speech therapist .

  3. My 5 year old does it as well, and so does my 40 year old brother. I have a good friend who works with high-functioning disabled adults and she said most are very good at the art of manipulation.

  4. "There are few things funnier in life than watching a moderately autistic, semi-verbal 5 year old outsmart and out maneuver her speech therapist"

    I had to smile at that. My son still speaks in rote scripted language and the most he can come up by thinking on his own is single words (often wrong but somewhat associated to the thing he is referring to).

    Oh what grief he gives his behavior therapists with his language. The least experienced of them has 7 years of experience. And he has like what 4 years of life lived?

  5. I have a problem with the very titlte of your post, since autism is not a dichotomy. It's a spectrum. You once again give two example sof extremes and say this proves the difference between subgroups of autism. It does not. It proves the difference between different people on the autism spectrum.

    As someone diagnosed with Asperger's but with major problems in daily living and behavior (so bad that I'm institutionalized), I reject the term "high-functioing". I also reject the term "low-functioning" because I recognize my intellectual and verbal ability. I affirm the spectrum and reocgnize the wide difference between people at different points on the spectrum. IMO, this is the only way to recognize the full range of abilities and difficulties that can come with autism.

  6. Just the fact that you use "afflicted" instead of "affected" to describe your daughters indicates that you have an hysterical "sky is falling" attitude about autism, and I believe that that in itself will have a deleterious effect on them. It will induce you to try all sorts of useless treatments and remedies, but the best you could do is to love them, "as is". Love them, guide them, accept them, protect them, and you'll get the best results. There are things that can help, can improve their skills, but there's no quick fix.

  7. Astrid,

    I completely agree that autism is a spectrum that encompasses a wide variety of function levels, and I think I acknowledged that fact a few places in what I wrote. I understand that you don't like function labels and that no label will be able to properly capture the nuances of a particular person's ability to function, but these labels are a useful approximation to convey a general sense of ability. And I think I addressed that as well.

    The dichotomy comes from divergence of the needs of the "higher" function group (think aspies) from everyone else. For the most part, the autism self-advocacy groups focus on the needs of the higher functioning and ignore the needs of those who can't function as well.

    As an example, when was the last time that you heard Grasp or ASAN talk about the need for more qualified ABA therapists, the need to make the services more universally available, and the need to make funding available to pay for the services? Instead these organizations talk about acceptance and accommodations, and while these are important things, they are not what the "lower" functioning need.

    All the acceptance in the world is not going to teach a child to talk, but a good ABA therapist can.

    As a result, I feel like children on the "lower" side of the spectrum are treated like second class citizens by the "higher" functioning. Their needs are minimized, ignored, or trivialized.

    Hence the dichotomy.

  8. Clay,

    I have to strongly disagree with you. All of the "acceptance" and "love" in the world would not have taught my children to talk. None of these things will teach to to read or write or do math. None of these things will help them deal with their sensory issues. None of these things will be able to address the biological imbalances that exist in their bodies.

    You seem to think I have a "sky is falling" attitude, but if you took the time to read what I have written, I doubt you would be able to point to one case were I do a chicken little routine. Every single thing that we have done to help our daughters has been slowly with a great deal of thought first.

    About the one thing that we agree on is that there is no quick fix for autism. And, as matters stand now, there aren't even any long fixes. I fully intend to keep chipping away at my children's disability and giving them back the abilities that autism took from them until hopefully one day they won't have to live with autism.

    If think that in someway means that I don't love or accept my children, then you can bugger off.

  9. "Affliction" is just wrong, and so is "biological imbalances". You can't deal with anything properly unless you really understand what it is, and the way you see autism is just wrong. Sorry.

  10. Clay,

    You are certainly entitled to your opinion. But in this case, you are just plain wrong.

    My daughters do have biological imbalances that are very likely to be a contributing factor to their autism. Whether you choose to believe that is entirely up to you and makes little difference to me.

    As for "afflication", well this is what it means -

    "afflict is a general term and applies to the causing of pain or suffering or of acute annoyance, embarrassment, or any distress"

    Sounds like autism to me.

  11. Okay Mike, ya got me. I'm not your biggest fan, haven't read all your blogs, and so I don't know what exactly your theory of autism is.

    I know that Mitchell doesn't believe in it being caused by mercury poisoning, and he's no fan of ABA, either. He and I can agree on those two things.

    All I can really remember you saying about your daughters is that they have difficulty sleeping on any regular basis. I don't really want to argue with you, and so I hope that you will read this post by another parent, one who is very intelligent and rational on the subject.

    No, really, read it, because she's "been there, done that", even did the GFCF diet with her whole family for years.

    That diet is only useful to those who have celiac disease or have problems digesting dairy products, and non-autistic people can have those problems just as autistics do.

  12. Clay,

    I know you don't follow what I write but that doesn't seem to stop you from talking about it, now does it? As you so nicely put it -

    "The Jabberwock doesn’t make much sense, either in comprehending what he reads, nor in writing what he means."

    When you add that to the past statements you have made, I think your opinion of me is quite clear. I would even be willing to grant you that my writings are sometimes not as clear as I would like, but reading comprehension? Really?

    But I can honestly say that I don't particularly care what your opinion of my reading or writing skills are or that you seem to think I talk about autism being "mercury poisoning".

    As for the the countering blog, I have read it on occasion and I don't find it particularly interesting. I understand that she has "been there, done that" but that doesn't mean that she is right or correct. She can only speak for her experiences as I can only speak for mine - and mine have been quite different. When you add in the arrogance, condescending tone, and the distortion of science, the site quickly moves quickly to the do not read pile.

  13. MJ said:

    "I would even be willing to grant you that my writings are sometimes not as clear as I would like, but reading comprehension? Really?"

    Really, but mostly because I saw a recent comment of yours which labeled me as a "notorious bully", as if that were a fact known to everyone. If my satire songs of Mitchell are bullying, then show me where I ever "bullied" anyone else. Read this first paragraph of the first blog I ever "dedicated" to Mitchell:

    "Most denizens of the Hub will recognize a certain nebbish who hates his autism, "yearns for a cure", and actively criticizes any autistic who maintains a healthy self-image, is able to support him/herself, and especially those who are able to have friends or (gasp!) get married! He envies the achievements of others so much, he just can't help but to throw stones at them. Well, payback's a bitch."

    I'll say, just once more, that Mitchell cannot continue to throw stones at people, and then hide behind his autism when others throw some back. I was defending my friends against his bullying, and if you can't understand that, then yes, you have difficulty with reading comprehension.

    What "bio-medical" treatments do you use, if any? I hope you don't use Lupron or OSR, a few other treatments that have no scientific basis.

  14. Clay's friends are all on the payroll of procure organizations. One of them is on the payroll of autism speaks and accepts money to pay for her research from an organization which she stated ideally wished a short future for autistic people (her words) meaning that she has no qualms or morals about accepting money or being on the payroll of an organization she believes is trying to engage in eugenics against autistic people.

    Ne'eman sits on the IACC, a commission created with the sole purpose of curing and eradicating autism. He does not mind that they pay his travel expenses to Washington.

    He calls Michelle Dawson his friend, but she certainly does not have that mutual feeling as she blocked him from her twitter account, constantly berates him and his ASAN colleagues on her TMOB comment board.

    Though I have been critical of some of the things Dawson does, I do applaud her for having the common sense to see what a loser Clay is and to write him out of her life. Funny Clay would feel the need to defend a person who has just about as much contempt for him that I have. Well par for the course for Clay that 21st century Bruno Bettelheim.

  15. Jonathan said:

    "Clay's friends are all on the payroll of pro-cure organizations."

    Heheheh. You have a very twisted mind, Jonboy. I just answered all this on another blogpost here - Michelle is NOT on AutSpks payroll, and Ari is providing the neurodiversity POV to provide support for autistics, instead of wasting money on research for cures.

    And no matter what they may think of me, I will continue to support the good work they do.

    Michelle blocked several people on Twitter, just because they were on the ASAN Discussion list. She became a bit paranoid, is all.

    "what a loser Clay is

    I am actually quite comfortable, can pay all my bills with my small SS check, and have a hefty savings account besides that, from an inheritance from my mother, and from a lump-sum retirement benefit from one of my previous employers.

    I've done pretty well, considering how things could have worked out.

    How are you doin'? ;-)

  16. Well, Clay, as a U.S. citizen who pays heavy FICA taxes out of every pay check, I wish you could get off disability and earn a living on your own. Then I would know that autism isn't an affliction :)

  17. @ Minority - I'm sure you don't know it, but I worked many different jobs over 45 years, starting with 4 years in the Navy, '64 to '68. I was never on disability, and hardly ever received unemployment checks. I took whatever jobs I could get to support my family. (wife/2 kids)

    You should know that "SS" stands for Social Security, which is what ALL retired folk get.

  18. I like this topic.I want know some helpful things from this side.It is one of the best post from other.It is a useful and charming post.It is extremely helpful for me.

    autism ireland & gheel

    autism ireland & gheel