Autism and the “Blindness Spectrum” - Guest Blogger
August 24, 2006 by Do'C 
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I’d like to welcome another guest blogger to Autism Street. She’s someone I know to be generous with her time, inquisitive, often skeptical, but most of all, thoughtful. She’s put together an interesting examination of perception based on an analogy, for your literary enjoyment. Without further ado, here’s Mum To Laura.
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Disclaimer: What follows is not intended to be a realistic portrayal of visual impairments or persons with visual impairments. It is only an analogy.
Just imagine . . .
That there was such a thing as the blindness spectrum (BS). Originally, blindness was very strictly defined, as being totally blind, or with severe visual impairment. Then, in the 1990’s the new concept of the blindness spectrum came into use. Since there was no clear distinction separating those having severe visual impairment and those who needed thick glasses, the terms BS came to include all those people who had any kind of visual impairment.
At that same time, an amazing epidemic of BS arose. Everywhere, people suddenly saw children wearing glasses. Parents were, of course, devastated to believe that their child was blind. They worried about their future in a sighted world. They formed support groups to discuss techniques for curing their children of BS.
Scientists pointed out that there was no clear evidence of a BS epidemic. “It is just that more children are being diagnosed on the blindness spectrum”, they claimed. “When we look back at studies from the past we see that up to 5 in 10000 people were blind. Now that the spectrum has broadened, up to 1 in 166 people needs glasses. Of course, it is also partially due to greater awareness. Parents take their children to an optometrist at young ages now. Many cases of children with BS were missed in the past.”
Parents were unconvinced. “That simply goes against common sense”, they railed. “When I was going to school, no one in my class had glasses. Now, there are four children in my child’s class on the BS.” Others argued, “My child is totally blind. There is no way you can miss a child like that.” They found support from one another. No one pointed out that parents of children with mild BS were getting on with their lives, and were not taking part in these on-line support groups.
Since BS was incurable, controversy arose. Some parents blamed vaccines. “My child could see just fine up to the age of 18 months. I just know he could. Then he had all those vaccines, and he started showing signs of lack of vision. A year later, we finally had the test to show that he needed glasses! I was devastated!” Others pointed out that young babies cannot see well because their vision is not well developed. “How did you know that your child was not on the BS from birth?” they asked.
Almost 20 years ago, a scientist in California published a paper claiming that vision could be restored using a technique where trained workers spent many hours per day doing eye exercises with blind children. This technique, known as ABA (Alleviate Blindness Activities), was claimed to completely restore sight to almost 50% of blind children receiving the intensive treatment. Despite many efforts to replicate this study, no case controlled study has duplicated these results. However, parents pointed to other studies showing that ABA could help blind children become potty trained, count to 10 and play the piano, as proof that ABA was effective against blindness. They demanded this expensive treatment for all those on the BS.
Others pointed out that ABA might be just a bit unethical. They argued that the gains shown in the original study were entirely dependent on the workers slapping blind children around to keep their attention focused on the eye exercises. They pointed out that ABA had also been shown to eliminate the special advantages of blind children – having more acute hearing and sense of touch. This argument was met with extreme hostility. “You are taking away hope from parents of the newly diagnosed blind!” they screamed. “What do you want us to do - let our blind children rot with no treatment?”
To press the urgency of their case, parents pointed to the epidemic of BS. “6000% increase in blindness” read the headline on the full-page ads. “Blindness is now the most commonly diagnosed childhood disability, affecting one child in 166!” they screamed. “We demand action. We demand research into vaccines as a cause of blindness. We demand ABA for all children with blindness.” Of course, they conveniently forgot that “blindness” was not synonymous with BS – the ads mentioned only blindness. They forgot that the rules for funding ABA allowed treatment only for children on the severe end of the BS. All those considerations were swept away in the quest to draw attention to their cause.
Nothing could stop the hysteria. Just imagine . . .
- Mum To Laura
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15 Comments
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Comment by laurentius-rex — 24 August, 2006 @ 2:28 am
Believe it or not similar notions have been held with regard to blindness and other disabilities. The psycology of autism parents is not radically different from that of parents of other disabled kids.
Blindness is a cultural thing like Autism and Dyslexia. Centuries ago without access to the thick lenses I wear, I would have been unable to accomplish a lot of things due to funtional blindness. However I resisted wearing spectacles for a long time, because as a child up to a certain age my eye had a greater ability to accomodate, until my studies got more advanced and print got smaller, at which time it became self evident to me that I had problems, up till then I had regarded my eyesight, as normal.
How coud a person who is blind in one eye escape detection on eye tests the sceptic might ask? well it is simple, I memorised them with the good eye, because I wanted to pass the test, being as that was what I had been taught was the objective in school tests.
As for ABA for blindness, well there is the famous Bates method for seeing better without spectacles and I don’t doubt there are a lot of quack diets and whatelse for organic eye problems. Personally I find eating carrots helps me see in the dark
Oh yes another parallel, for a long time charities for blind people were run exclusively by sighted people, the argument was when the blind got stroppy about this, that they were not capable of participating in meetings because they could not read the minutes or see the faces of the other participants in a meeting so the idea was absurd. Indeed prejudice against Blind people has a long pedigree, Louis Braille did not have an easy time getting his method of reading accepted, after all he was blind, what would he know.
Comment by Joseph — 24 August, 2006 @ 7:45 am
That’s a good analogy in terms of explaining the autism epidemic. If you can imagine a bell curve of visual ability, it’s easy to see why shifting goalposts results in an “epidemic” of anything. Gernsbacher et al. illustrate that with a height analogy and work out the numbers.
But there are others (namely Thomas Sowell) who argue that the autism spectrum should not be called the autism spectrum any more than myopia should be considered part of the blindness spectrum - because “blindness” and “autism” scare parents. But that’s just semantics really.
Comment by Mum to Laura — 24 August, 2006 @ 8:05 am
Thanks for the positive comments. Laurentius-rex - I have no doubt that there are lots of parallels between not just blindness and autism, but other disabilities and autism, as well as things that are no longer considered disabilities such as homosexuality and autism. However, my main point was to expose the silliness behind the “big lie” that there is a huge, unmistakable autism epidemic.
There is a interesting opinion piece in the SAR this morning, also linked here. In this article, a mother claims to expose the “big lie” that there is NO autism epidemic through her own personal experience. Strangely enough, she has a 19 year old child diagnsed with Asperger’s. This child was not diagnosed (at that time with possible autism) until he was in second grade! This child is a walking, breathing example of exactly how hard it is to prove an autism epidemic, not proof that there is one!
Comment by Not Mercury — 24 August, 2006 @ 8:23 am
Thanks for this “Mum To Laura”
I love when Autism-Street plays host to a guest blogger. Not because I don’t enjoy reading everything Do’C has to say, but because it allows perspective from people who don’t blog on a regular basis. So nice work, I really enjoyed reading this.
I read somewhere that color blindness, which is considered a handicap by some, provides superior ability to distinguish shades of similar colors. Something about being able to see camouflage better? The forest for the trees? Something like that.
Comment by Ruth — 24 August, 2006 @ 8:51 am
Until 7th grade, I didn’t know I needed glasses. In elementary school, our work was either in our books or what the teacher dictated. I had an excellent memory, so teachers never realized I couldn’t read the blackboard. I was getting all A’s, must not be a problem. Then in junior high, our assignments were on the blackboard, and I had to be able to read them. I wonder how long I was near-sighted before anyone realized it. Someone as nearly blind as I am couldn’t be missed, right, like a train wreck?
Comment by Do'C — 24 August, 2006 @ 9:28 am
NM, I agree and enjoyed reading it as well. I also appreciate that fact that readers welcome a guest blogger. Thank you for a thought-provoking article Mum to Laura.
The article Mum to Laura linked to in her comment is about as typical as they get:
No shortage of Apples and Oranges.
Comment by Jannalou — 24 August, 2006 @ 12:01 pm
I was in grade 4 when I got my first pair of glasses. I’m near-sighted and only needed them for the blackboard and for reading. The eye doctor gave me an exercise thing I was supposed to do when I was reading - every however many minutes, I was to look away from the book and exercise my eyes.
No way that was going to happen! A nine year old girl with (un-dx’d) ADHD who loved to read was not going to know how many minutes had elapsed or be able to tear herself away from the story.
I loved this analogy - can be applied to any disability, I’m sure.
Comment by Ms. Clark — 24 August, 2006 @ 1:34 pm
Thank-you, Mum to Laura!!
Excellent essay, and made me laugh, too. I love the picture of those poor children whose lives have been destroyed by blindness!
I didn’t discover that I had one really bad eye, and that I only saw in 2 dimensions, basically, until I was 35 years old. I had never been to an eye doctor.
Comment by Alyric — 24 August, 2006 @ 3:57 pm
Thanks MTL - one wonderful post. Very informative.
Comment by Soapbox mom — 25 August, 2006 @ 6:59 am
Great post by Mum to Laura. Nice analogies all around. And thanks to Do’C for posting it.
Though I don’t think those children in the pic are really blind, I think they are the illegitimate offspring of Austin Powers.
I remember getting my first pair of glasses in 7th grade and being able to actually see leaves on trees and tiny gravel on the street from our living room window. I had previously thought that everyone had to squint to see things that clearly. To me, the best thing about extreme myopia is that if I want my house to look cleaner, I just take off my glasses. All those dust bunnies disappear like magic!
Comment by mike stanton — 27 August, 2006 @ 2:22 am
I really enjoyed this, having recently joined the blindness spectrum myself. Reading glasses have made a big difference to my life. Similarly, providing practical help to autistic people makes more sense than expecting them to see the world through our eyes.
Comment by Mum to Laura — 27 August, 2006 @ 6:02 pm
Thank you all. I appreciate all the positive comments. Maybe someday I will get my own blog. However, the blogsphere seems a bit heated at the moment, so I guess I’ll wait a bit
Comment by impatientpatient — 1 September, 2006 @ 7:42 am
so….. a question here. are we disputing the 1/166 figure here. i kind of hope so. are we disputing the horridness of autism? again i hope so. i only work with kids with autism-like tendencies and honestly, the biggest problem i have is how mean OTHER people can be. not kids, but adults who are ignorant and rude. sometimes the basic humanity of kids is missed as soon as a diagnosis is reached and other people hear about it. then they are just a problem to soved or dealt with.
loved the post!!
Comment by Mum to Laura — 1 September, 2006 @ 11:56 am
I wouldn’t dispute the 1 in 166 figure when it means ALL of the autism spectrum. I would certainly dispute that it applied to “autism” or “autistic disorder” or “full-spectrum autism”.
Of course, I am also disputing the horridness of autism. There’s no doubt that ASD - the SPECTRUM - results in disabilities. That’s how it’s defined. But we don’t write off children who need glasses or are blind. We give them glasses, or move them to the front of the class, or teach them braille or give them other accommodations. We don’t pretend that they will “rot” unless they are made into people with normal sight. We don’t discount their other abilities just because they have a vision impairment. We don’t pretend that the world would be a better place if no one needed glasses. And we should do the same for people on the autism spectrum.
Comment by Do'C — 1 September, 2006 @ 9:03 pm
“I wouldn’t dispute the 1 in 166 figure when it means ALL of the autism spectrum.”
I think that number may even be on the low side (based on the fact that incoming data often lags behind realtiy). It wouldn’t surprise me a bit if the long-term epidemiology shows something more along the lines of twice that for all ASD spectrum definitions. Evidence of epidemic? Hardly. Evidence of increased awareness/recognition, changing criteria, changing requirements for services, diagnositic subsitituion, possibly even changing willingness by parentls to seek diagnosis to facilitate succes in the educational system, etc.