Remember Daniel Corby
Earlier this week, I collected posts from autistic people reacting to the fact that Patricia Corby has been arrested for the murder of her 4-year-old son Daniel. Here are some others that I think might be meaningful to you.
From Sarah at Kitaiska Sandwich:
In a culture in which disabled lives have so little value and society as a whole sympathizes with the killers, disabled children are killed by their parents, elderly people with chronic illnesses are killed by their children or caregivers, and fetuses suspected of genetic anomalies are routinely aborted — even by people who otherwise oppose abortion or desperately want children. Unlike other hate crimes, in which the perpetrators are up-front about their hatred for the victims, these crimes are often committed in the name of “mercy,” or even “love.” “I couldn’t stand to see him suffer.” “Bringing a child like that into the world wouldn’t have been fair to my other children.” “He’s happier now that he’s out of his misery.”
From Gavin at Life with Aspergers:
In my own way I like to think that the world isn't evil, that people don't commit these criminal acts unless they are completely overwhelmed. I try so very hard to attribute causes to things around these people, to blame society for a lack of services, to blame mental issues, high blood pressure or any other influence.
It's like making excuses for Hitler.
From Kassiane at Radical Neurodivergence Speaking:
And this is what awareness does. The dominant narrative is that of hopelessness. The dominant narrative is of isolation and despair. The dominant narrative is that we are perpetual burdens, never to grow or be anything but 100% dependent. The dominant narrative is of tragically unhappy lives.
Gavin Bollard, who has Asperger's syndrome and sons on the autism spectrum, talks about hating and curing autism:
There are parents out there who say that they hate "autism". I can see how it presents a large target but actually, it's not "autism" itself that you hate. It's the inconvenience, embarrasment, suffering and just plain hard work associated with some parts of the autistic condition that you hate.
It would be better if we could be more specific about the things we hate. Clearly we hate having to clean up after a toileting accident for example. Make it clear though, it's about US, the parents, not the children. . .
You see, if you simply "hate autism" then your only option is to fund a possible cure or worse, to try dangerous therapies (brain surgery and chelation) in an attempt to eradicate what you see as the problem.
Personally, I don't believe that there will be a cure in my lifetime. In fact, short of some kind of thoroughly evil sterilisation process, I don't think there will be a "cure" at all.
I have some qualms about the racial analogy Gavin uses in the first part of the essay, but I think the points he is making throughout are significant and worth thinking about.
To celebrate Father's Day, I made a Storify featuring some of my favorite fathers with Asperger's syndrome.
Lucy Berrington, who is on the board of the Asperger's Association of New England, has written what I find to be a spectacularly unconvincing case for keeping Aspergers as a diagnosis distinct from autism. This change is very likely happen in the next edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5).
I think that a very good case can be made, by the way, for keeping Aspergers as a diagnostic category. I love Gavin Bollard's suggestion for simplifying the diagnostic categories to simply "Kanners Autism" and "Aspergers Autism," which would maintain a clear distinction between people who need intense intervention and those who need accommodation and education (really, that's what schools, the government, and insurance companies care about). Please take the time to read his piece defining the issue.
You'll get much more from it than from Berrington's piece, which makes the following argument:
Why is the Asperger’s label worth retaining? At the Asperger’s Association of New England (based in Watertown, Massachusetts), the largest and most established U.S. organization supporting people with Asperger’s, we see daily how powerfully and positively this diagnosis influences the lives of those with the condition. Before 1994, when Asperger’s syndrome was first included in the DSM, they wandered a diagnostic wasteland, sometimes picking up inappropriate labels—bipolar disorder, schizophrenia, OCD, atypical ADHD—that did little to clarify or address their needs. The Asperger’s diagnosis, in contrast, has provided meaningful identity and generated a tremendous international self-help movement. As Temple Grandin, a professor and a prominent autistic American, has said, the size and voice of the Asperger’s community is reason enough to leave the diagnosis in place. A corresponding profusion of literature and research has facilitated leaps in understanding among individuals, families, educators, and clinicians. A simple qualitative scale cannot serve this community and culture.
Except that Temple Grandin doesn't Asperger's syndrome, even though sometimes she says she does. She doesn't come close to matching the diagnostic criteria. The trouble with Aspergers as the diagnosis is currently configured is that it based on the set of autistic traits identified by Hans Asperger, not any modern understanding of what autism is. There is no chance that we will return to the diagnostic wasteland she describes-- the change is based on on knowing more about autism, not less.
The worst thing about Berrington's piece is that she ignores research indicating that the current distinction between Aspergers and PDD is worthless and meaningless. As John Elder Robison noted recently, in a piece summarizing Catherine Lord's recent work, which diagnosis you getdepends MUCH more on which doctor you see than on what symptoms you present:
To her surprise, after analyzing the data, she found the principal predictive factor had nothing to do with the individual. Looking at records from a number of good university hospitals, she found places who called almost everyone Asperger, and other places where everyone was PDD-NOS. There was no discernible pattern of variation between individuals; they seemed to simply get different diagnoses in different places.Was there more to the story?To answer that, she looked at other factors, like IQ. For example, many people call Asperger's "autism lite" or "high IQ autism.". Her review of Asperger diagnoses at one Ivy League school bore that out, with their Asperger kids having average IQ of 123. However, other doctors must see Asperger's differently, because a Midwest clinic in the study has an average Asperger IQ of 85.
Actually, the worst thing about Berrington's piece is her failure to realize how much the focus on the specific traits relative to Aspergers hurts understanding and diagnosis of people with similar levels of autism but different traits. Aspergers is based around traits that tend to be visible in male children. The bias against identifying autism in girls and in people whose autism may not be noticeable until adulthood is the worst thing about the Aspergers diagnosis.
The weakness of her thinking my be clearest in this simile:
Retaining the current diagnosis is not about distancing Asperger’s from other forms of autism. This is about classifying a particular subgroup in a way that demonstrably adds value. That Asperger’s is a form of autism does not mean we should know it only as autism. Spanish and Italian are closely related linguistically, yet it isn’t helpful to call Italian Spanish.
Excecpt that what Berrington wants is to not to have "Italian" called "Spanish." What she wants is "Italian" to do separated out and given special classes and special schools, and celebrities and attention. She wants the categories to continue to be "Italian" and "Other Romance Languages." And she doesn't care at all anout how that system hurts people who speak French or Spanish. Or that tons of them have wrongly been sent to the "Italian" school. Or that tons of people who actually do speak Italian are being told that they don't.
Berrington and her organization do not want to have to change their name and their understanding of autism. That's understandable, but it's based on what's easiest for them, not what's best for the autism community as a whole.
How was your Valentine's Day? Mine was not especially romantic, but pretty fun. I took most of the day off and went to the San Francisco Bay Aquarium with my boyfriend, Max. We walked around Fisherman's Wharf a little and went out to dinner at The Crab House. Very low stress. Nice.
Gavin Bollard's piece "Are Aspies Capable of Love?" was re-posted by Autism West Midlands. It's one of the things that best helped my understand myself and my emotions, and I cannot recommend it highly enough. A quote:
Aspies are very capable of loving but they often confuse the issue by adopting an altogether too rigid view of love. Despite popular mis-belief, aspies are generally fairly emotional beings. We have intense feelings of happiness and even more intense feelings of sadness. The smallest triggers can produce huge emotional responses in us. While a bad day at work may make an NT grumpy, it could make an aspie feel suicidal. Similarly, when something good happens an aspie may seem to be over-reacting or overly happy. Most aspie adults have long since learned to control excessive displays of happiness but it's very apparent in aspie children with jumping, shouting and singing.
Speaking of singing-- I thought the video below, with aspie musician Jerod Goodman playing a cover of Ray Lamontagne's "Jolene" for YouTube user Joleenlove was a pretty sweet Valentine.