More Autism Than You'd Think; However......
Published May 31, 2009 @ 12:25AM PT
You've probably heard of the recently published study in the British Journal of Psychiatry about autism being undiagnosed in "hundreds of thousands" of children. The study was led by Professor Simon Baron-Cohen of the Autism Research Centre. The May 28th Telegraph offers a summary:
A study of schoolchildren in Cambridge has found that for every three children who have been diagnosed with autism spectrum disorder there are around two who have the condition but have not been given a formal diagnosis.
It is estimated that around one in 100 children between five-years-old and nine-years-old have autism, meaning there are around 500,000 in the UK. But when researchers carried out more detailed assessments of 11,700 children, they found the true prevalence could be as high as one in 64.
This would mean that there are an additional 300,000 children in Britain with autism spectrum disorder but who have not yet been identified.
In the actual study, the researchers are careful to note some limitations that the media have not always highlighted, from the response of parents returning surveys being "quite low," to the unusualness of Cambridgeshire, described as not having a "nationally representative population since it has a higher proportion of higher social classes than the rest of the UK."
But (for starters) let's just consider the main point of the study, that there's a lot more individuals on the spectrum out there than are formally diagnosed. In the Telegraph, Baron-Cohen says that "the undiagnosed cases are likely to be at the mild end of the spectrum, are coping well with their families and may not need a diagnosis," and also that "for some families the autism label may 'raise anxieties' and be intrusive, rather than helpful."
Don't know about you, but we've certainly noted an increase in children with various diagnoses that aren't autism, but involve sensory and/or language processing issues, dyscalculia, hyperlexia, speech delays. These don't add up to a formal autism diagnosis of course but there's a sense that a number of children have "something" in the form of learning challenges, and that the "learning disability" category does not exactly cover them. Indeed, in some cases, parents (and grandparents) have been careful to explain the specific needs their child has and to note that "no, it's not autism."
And I'm reminded all over of how autism, once said to be "rare," is now being studied to determine precisely the opposite. About how, no matter where we go now, I always suspect someone else out there is, too, on the spectrum, as determined not only by how many puzzle magnets are affixed to cars.
Dora posted earlier this week about the revisions to the DSM-V definition of autism and I added a few musings. How might the "collapsing and expanding" of the spectrum affect---"collapse and expand"---diagnoses of autism? And while the unreported, or under-reported cases are said to be "mild," what exactly does "mild" (like "severity") mean?
I've a bit more to say about the study, in posts to follow in the upcoming week.
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Comments (20)
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Kristina is a Classics professor in Jersey City, New Jersey, a blogger (formerly at AutismVox), a translator (of Virgil), and an advocate every day for her son, Charlie.
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End the Perpetuation of Pity
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End the Perpetuation of Pity
This is the kind of thing I think of when I hear "neurodiversity." Not opposal to treatments when they're appropriate (but I keep hearing THAT's what "neurodiversity" is supposed to mean...), but just that there is a lot of variation in people (a lot! down to differences in how people perceive the world with their senses) and that's okay.
Posted by Fleecy B. on 05/31/2009 @ 05:16AM PT
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Bingo. That is what Neurodiversity means. There are a few vocal Neurodiversity proponents that appear to be anti ABA, when they are really anti adversives, and also want to dispel the idea that only those who've received ABA therapy can succeed, because ABA doesn't work for everyone, and other treatments need research. As this is a very complex point of view, people mistake this to mean that all neurodiversity proponents are anti treatment or anti-ABA, which is most definitely far from true.
Most of us acknowledge our own challenges and/or our children's challenges, and we want them to receive treatment and help, without stigma.
Posted by Navidad Arnett on 05/31/2009 @ 06:07AM PT
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Yeah... that's what I thought but it gets confusing sometimes with all the bad stuff I keep hearing. But I guess that happens with just about anything. Thank you for your reply, it was helpful :)
Posted by Fleecy B. on 05/31/2009 @ 06:20AM PT
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I'm running out of patience with media, public, and professionals who downplay *mild* autism, which completely ignores uneven skills and other similar or related variants.
Mild autism is not the same as mild vision loss or even a mild scrape on the knee.
Posted by Elesia Ashkenazy on 05/31/2009 @ 07:32AM PT
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I think people see the "mild" and then kind of miss the "autism" part... I mean, they obviously see it but in presence of the word "mild" seem to forget what the "autism" part means. (Then there's the problem of so many people not really knowing what "autism" means in the first place, so... I don't know where one of these ends and another begins)
Posted by Fleecy B. on 05/31/2009 @ 09:03AM PT
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On the one hand I find it helps to say that my son is "moderate to severe," as a kind of shorthand. On the other hand, "mild" seems like a really loaded term as it de-emphasizes the reality of issues of all kinds that individuals deal with. But I've certainly heard professionals and parents use the term in the sense of "it's just mild autism"---a professional (doctor etc.) maybe trying to make the parents feel "better," though I don't think that's a very effective strategy.
Posted by Kristina Chew on 05/31/2009 @ 09:11AM PT
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I agree. If someone is labeled with "mild autism" people assume they are perhaps just a bit quirky and don't require any accomodations, services, etc. I feel this is especially true for those of us who are vocal about not wanting to be cured. Yes, I like being Autistic but I do have very real challenges.
Posted by Katie miller on 05/31/2009 @ 07:36AM PT
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I haven't ever seen "mild" used in any helpful sort of way.
Posted by Paula Durbin-Westby on 05/31/2009 @ 09:36AM PT
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Me either. There are many reasons I just call a person "autistic" and not "severely autistic," "mildly autistic," etc. and this is only one of them, but it's a big one - it just seems to cause more problems to try to quantify things like this (especially since it can be pretty difficult to quantify)
Posted by Fleecy B. on 05/31/2009 @ 09:44AM PT
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My son was diagnosed as Childhood Disintegration Disorder. What happens as you improve the doctors change your diagnosis to Asperger. So even though you have some of the previous deficits (milder instead of severe) you are given a new diagnosis. Consequently I am not sure what label to use when referring to my son. I know my son has areas that are not included in other parts of the spectrum.
So I think no one really has a handle on this.
Posted by L I on 05/31/2009 @ 11:06AM PT
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Indeed, yes!
And I really wonder if Charlie would have diagnosed with autism in the past---maybe MR and emotional/behavioral disorder.
Posted by Kristina Chew on 05/31/2009 @ 03:47PM PT
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I shudder to think about how Jeremy would have been labeled, had he been born in my generation instead of 35 years later. Labeled and *warehoused*.
And here he is, at 18, definitely on his way to an adult life filled with satisfaction and comfort and pleasure and personal-bests and progress on his own timetable... step after step, one at a time.
And I see this kind of better outcome in others, at all points on the spectrum: the "classically" autistic child who doesn't develop expressive speech but *does* get support in developing literacy and learning how to use AAC devices, and moves into a much richer and better adulthood as a result, the Asperger's child who gets the support and accommodation and freedom from bullying that all children deserve -- and the child like Jeremy, somewhere right in the middle.
I share Roy Grinker's sense of optimism, regarding long-term trends.
Posted by Phil Schwarz on 06/04/2009 @ 11:09PM PT
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I am pretty comfortable with the idea that autism is a range of sensory distortions that may be easy to adapt to for some, and much harder for others. My daughter has all the dice in the hearing and therefore imitation areas and was slow to develop speech, so percieved as less intelligent. her frustration with her lack of expression causes her extreme tantrums. And yes if you scream louder, people run faster. Whereas my son would have the sensory issues around balance, body tone, movement issues. He spoke late but caught up quickly, with applied behavioural analysis he has learned to use visual schedules and contingency based behaviour programs (you do that I take away your DVD player) - he is very verbal and can read, type, blog for himself so is percieved as more intelligent. If he hadnt been so badly mismanaged in his previous school, he might be re-diagnosed as Aspie.
I think their autism affected them equally, just in different domains, it is really our preceptions that define the severity.
I know I can sit and have an interactive conversation with Boo, while I draw a picture or write some film titles of his choice. But I dont like walking with him for too long as he has my arm out of its socket with the swinging and pulling and then bolting. And you can call and call but you have to go to him. He doesnt look up and come find you.
Bratty is a woman of few words, she enjoys a bit of rough housing and may share a picture book or some pretend play with her muppets, but no chat. I could happily walk 10 kilometres with her as her poise, balance and compliance in public is wonderful. If she ever runs off a little when we are walking, she always comes back.
With applied analysis, each has had their strengths identified and used to help with their challenges. They are still autistic as the day is long; but Bratty listens and understands better, (and is learning to accept No) and Boo is learning to walk a little straighter, and wait for slightly longer each day.
I think we are born with the same levels of Autistic sensory distortions, we just learn to overcome and compensate for them at different times. *sorry for long ramble*
xx
Posted by lisadom dom on 05/31/2009 @ 01:37PM PT
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That's an interesting idea.
Posted by Fleecy B. on 05/31/2009 @ 05:28PM PT
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Mild and severe mean exactly what they ordinarily mean.
These arguments over whether some persons can be described as moderately or severely affected are absurd.
A person who can not communicate in any signficant way with the world is much more severely affected by their autism disorder than someone who can type and write complex postings on the internet.
A person who can lead an organization, meet regularly with members of the media and advocate for a political or ideological position is much less severely affected than a person living in institutional care, injuring himself/herself with limited or NO ability to communicate.
These harsher realities are not discussed much on this "autism" -change.org site but they exist in the real world. I have a severely autistic son. I know he is severe because of his serious deficits. I do not use the term as a 'shorthand", I use it because it is an accurate characterization of his realities.
I have visited psychiatric institutions and seen the lives of SEVERELY autistic persons living in them, people who do NOT pose for media interviews or write blogs.
A couple of years ago there was a story from New York about a middle aged autistic woman living in "care" in the New York area who was regularly abused and tormented by staff. She was unable to communicate her situation at all. The matter came to light when it was discovered by a conscientious staff member and confirmed by video cameras. Last I saw some of the staff had left the jurisdiction to avoid criminal charges. The abused autistic woman was SEVERELY autistic unilke Ari Ne'eman, Alex Plank and other HIGH FUNCTIONING persons with autism spectrum diagnoses.
Posted by Harold L Doherty on 06/01/2009 @ 02:26AM PT
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"Mild and severe mean exactly what they ordinarily mean."
Well, they don't ordinarily mean anything. They are both relative/comparative terms, defined more by consensus or an arbitary cut-off than internal/instrinsic properties of the condition.
The discussion over whether the consensus/cut-off matches the intrinsic reality of the condition is far from a useless discussion, as you would know had you kept up to date with the professional world. I must re-iterate that I am glad you don't get to decide these sorts of things.
You provided several examples of situations where you gave extreme (and simplistic) examples. At no point did you show any recognition of the concept that there might be people inbetween. Nor did you show any recognition of the idea that delineating between mild/moderate/severe is not simple as there is not just a spectrum of autism severity, but each symptom can have it's own severity.
I've seen plenty of people with autism who rate as severe on one trait, but not severe on another. Such people are not unknown.
Do keep up Harold.
Posted by Dedj C on 06/01/2009 @ 09:34AM PT
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Well Harold, My son also self harms, and if we don't carefully manage his schedules, expectations and ensure he gets enough exercise daily, he can be quite aggressive. But thanks to the good people in his school who support me, we can usually find the reason for increased inappropriate behaviours and come up with strategies to deal with them. My daughter is also quite aggressive and difficult to calm down (have just spent an hour convincing her that it was NOT okay to take the garbage back out of the outdoor wheely bin.
But hey, I can see the child underneath and when I see their problems, I can still see how with better parenting, planning and understanding, there will be a solution - However gradual it might be. I just have to work harder and smarter.
I am always sorry to hear about adults with special needs in neglectful or abusive situations, whether they have autism or not. However I think that continued advocacy for and by people who have autism, at any "level" including speaking publicly will make it harder to de-humanise and therefore disregard the civil rights of anyone whose disability precludes them from advocating for themselves.
I hope you can see the light too Harold. xx
Posted by lisadom dom on 06/01/2009 @ 02:52AM PT
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Just thinking about your comments, Harold. I am glad you voice your opinion. If we get pieces of someone's life on this blog do we really know much about the whole kid? The answer sounds like story, THE BLIND MEN AND THE ELEPHANT. I know I have made that mistake myself on Autism Change.org. I judged the severity of the child based on the words of the parent in our blog. After getting emails from these parents I realized that their kid was more severe because the parent was protecting their child's privacy online.
I do freely discuss many things about my brother and my son. But there are many things I will keep private ( self-mutilation, aggression, meltdowns, shutdowns, etc.) for their sake. I know information on these sites don't go away. I just share the normal autism stuff.
My son's Childhood Disintegration Disorder is a rare, severe form of autism. I don't know much about your child but I think we are all being challenged including our children (sometimes more than we can handle).
Sounds like you are helping your child. You are an interested parent. As an advocate I have met many parents that were in denial. Denial is fine as long as you are dealing with life. People not dealing with autism suffer more than we do.
THE BLIND MEN AND THE ELEPHANT
John Godfrey Saxe's ( 1816-1887) version of Indian legend
http://www.noogenesis.com/pineapple/blind_men_elephant.html
MORAL. So oft in theologic wars,
The disputants, I ween,
Rail on in utter ignorance
Of what each other mean,
And prate about an Elephant
Not one of them has seen!
Posted by L I on 06/01/2009 @ 08:24AM PT
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I appreciate Lisadom's commentary:
"...continued advocacy for and by people who have autism, at any "level" including speaking publicly will make it harder to de-humanise and therefore disregard the civil rights of anyone whose disability precludes them from advocating for themselves."
Why must autistic people who are highly self-determined, or who are considered *mild*, "high-functioning," or even Asperger's autistic, supposed to not experience struggles worth any attention or aid? Where is the data behind that belief? Or is this belief just one of many ongoing highly damaging assumptions?
Seriously, some people on the autistic spectrum who are *mild* struggle so much to be a part of this world (or to receive a diagnosis), that they reach a point of terminal surrender and end up committing suicide. Should suicide also be classified by different levels?
It is extremely taxing and difficult to live life being accused of--for lack of better words--making autistic mountains out of autistic molehills. ALL autistic people deserve appropriate rights and services!
Obviously, autistic people who are *severe*, or who are less self-determined, may face significant daily struggles. This information is not new. But I have yet to interact with an Autistic community member who is interested in serving only the needs of those who are deemed *mild* or Asperger's autistic.
There are plenty of autistic people who struggle greatly in daily life who happen to contribute significant ideas, facts, information, and opinions regarding autism by composing awesome blogs and even interacting with media sources.
Attempting to blast so-called high-functioning autistics out of the water is a form a of prejudice and intolerance. Do we force people of different races to state how dark or light their skin is so that we can assess where they fall on some made-up 'wheel of importance' or internal judgment system? No. But there are people out there who would probably jump at this idea--if we let them.
Humans are diverse. There are many subdivisions and genetic variations between us all. Classifying and dividing humans--on a rigid grand scales--for the sole purpose of deciding whose needs are more important will always lead to bias, subjectivity, and ill-feelings. At its worst, it can lead to destruction and extermination.
So what's so bad about working together for the greater of the whole?
Posted by Elesia Ashkenazy on 06/01/2009 @ 02:10PM PT
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It just shows ignorance about autism. Mild or severe everyone has unique needs but the public thinks in stereotypes . People don't realize it is a spectrum disorder. They need more education to understand the complexity of it and how all types of people are struggling even with help.
I think you have the answer to your question- speaking publicly and clearing up misunderstandings. This isn't easy to do.
Posted by L I on 06/01/2009 @ 04:19PM PT
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