Heye Sophia's List: Identity

• the first major revision in 17 years.
• where to draw the line between unusual and abnormal — and its decisions are sure to be wrenching for some families.
• school budgets
• diagnosis is in many ways central to their lives.
• Close networks of parents have bonded over common experiences with children; and the children, too, may grow to find a sense of their own identity in their struggle with the disorder.
• People with Asperger’s or P.D.D.-N.O.S. endure some of the same social struggles as those with autism but do not meet the definition for the full-blown version.
• qualify for the diagnosis by exhibiting 6 or more of 12 behaviors; under the proposed definition
• ‘These kids don’t fit the criteria for an autism spectrum diagnosis,’ they are not going to get the supports and services they need, and they’re going to experience failure.”

6 more annotations...

• That definition matters — an official diagnosis of autism is what opens up access to services and treatment to many affected individuals, both children and adults.

   
• remove up to a million people, statistically, from the numbers of those diagnosed with autism.
• without, of course, changing the daily lives of those disabled by their symptoms one bit.
• Dr. Frances “thinks his manual inadvertently facilitated these epidemics — and, in the bargain, fostered an increasing tendency to chalk up life’s difficulties to mental illness and then treat them with psychiatric drugs.”
• a changed diagnosis is going to change lives, and probably not for the better.
• So take your questions to Consults, but we can discuss further here — what will this mean for newly undiagnosed kids?

4 more annotations...

• “Some treatments and services are driven solely by a person’s diagnosis, while other services may depend on other criteria such as age
• The likelihood of being left out under the new definition depended on the original diagnosis: about a quarter of those identified with classic autism in 1993 would not be so identified under the proposed criteria; about three-quarters of those with Asperger syndrome would not qualify; and 85 percent of those with P.D.D.-N.O.S. would not.
• it focuses tightly on “classically autistic” children on the more severe end of the scale. “The major impact here is on the more cognitively able,” he said.
• “It’s not that the behaviors didn’t exist, but that they weren’t even asking about them — they wouldn’t show up at all in the data,” Dr. Lord said.

2 more annotations...

• where to draw the line between unusual and abnormal
• school budgets for special education are stretched
• Tens of thousands of people receive state-backed services to help offset the disorders’ disabling effects, which include sometimes severe learning and social problems, and the diagnosis is in many ways central to their lives.
• may grow to find a sense of their own identity in their struggle with the disorder.
• A diagnosis of Asperger syndrome was crucial to helping her daughter, who is 37, gain access to services that have helped tremendously.
• The changes would narrow the diagnosis so much that it could effectively end the autism surge
• Disagreement about the effect of the new definition will almost certainly increase scrutiny of the finer points of the psychiatric association’s changes to the manual.
• eliminating Asperger syndrome and P.D.D.-N.O.S. from the manual.
• “Our fear is that we are going to take a big step backward,” said Lori Shery, president of the Asperger Syndrome Education Network.

7 more annotations...

• "the 'abnormal' condition known as Asperger's syndrome" could be "remarkably similar to the 'normal' functioning of an engineer's mind,"
• Were their kids, he wondered, getting a double dose of some kind of autism-causing genes?

  • This makes me wonder whether this autism has to do with NURTURE instead of NATURE.

  • The kids of engineers/math whizzes.
• He'd begun to theorize that this sort of brain type would be common in any population that brought people with very strong math, science and tech skills to cluster together — and to think that if these high systemizers were choosing one another as mates, they might be particularly likely to have autistic children.
• Assortative mating — or, in common language, the tendency of birds of a feather to flock together — has long been known to play a big role in how people choose their marriage partners.
• "People are attracted to each other based on their similarities," says Carol Mathews, a psychiatrist with the UCSF Medical Center who has studied the role of assortative mating in psychiatric disorders. "It's not necessarily a conscious choice."
• Beyond certain familiar links that he expects he may find between, say, engineer parents and children with speech delays,

  • It's hard for me to research autism around the globe because the info I'm finding is about organizations that raise awareness around the world, instead of how uninformed societies view autistic people.

  • I can tie in loneliness/social interaction of the PARENTS and relate that to their autistic kids... I think I want to use this to compare autism in different countries.
• We are also collecting data on dyslexia and ADHD," he says, "but precisely which types of parents are more at risk for having such a child is exactly what we are wanting to discover."

5 more annotations...

• I still have to validate how he feels regardless of the cause.
• I can honestly say that twelve years after the initial diagnosis, I am starting to forget what life was like without autism.
• I want him to be happy and independent.
• In the end, acceptance does not mean complacency.  For me, it means accepting my son for who he is with or without autism.  
•  Accepting but still never giving up hope that my child will get better. 
• I told him that I wasn't trying to erase his autism but that sometimes we all need to learn and follow the same social rules.
• Social rules aren't just there so that we can have friends, but also so that we can get along in life; keep a job; stay out of trouble; and more. I told him that while his autism contributes to who he is as a person and to his strengths, the autism also sometimes makes it difficult for him to understand social skills; participate in typical activities; and create or maintain friendships.
• So if he likes his autism, do I really have the right to counsel him otherwise?
• A Journey of Acceptance

7 more annotations...

• Everyone loves Jalen’s smile. It is so beautiful, and it can make you temporarily forget all that’s wrong in the world! He also is very earnest in his art projects — he’s now 13, and they are pretty much preschool/young elementary school type projects — but I appreciate how good he feels about doing them.
• caring.

• Prime among these demands is the lack of enough hours in the day to do all one wishes.
• • This is a really good way for me to connect the two issues I've been researching: communication and autism.
• Do it early and do it often! It is important that your children know about autism and that the information you give them is appropriate for their developmental age. From early childhood, they need explanations that help them understand the behaviors that are of concern to them.

1 more annotation...

• This isn't the first study to reach that conclusion. But what does it mean? Many researchers dismiss research like this by saying wealthier people have more resources to get an autism diagnosis. They say more educated people are more likely to pick up subtle differences in their kids. And perhaps they're right.
• Researchers note that intellectual disability by itself is inversely correlated with family affluence. That is, the more prosperous the family, the less likely they are to have an ID child.
• If it's true that most of this 3:1 difference is due to more aware parents with better resources, then it follows that two out of three poor children with autism are going undiagnosed.
• A significant percentage of our affluent population became financially successful by thinking differently
• Some people who think "differently" are just ordinary folks with a different thought every now and then. Others, however, are different all the time because their brains are different.
• Fifty years ago, such people were called eccentric. Today, more and more of those individuals are called autistic, or Asperger's.

• Does a little bit of autism make you exceptionally successful, while a lot makes you exceptionally disabled?
• At the same time, our society has created institutions where geeky people with autistic traits congregate.
• How are we going to identify these kids so we can get them the help they need, and more important, where are we as a society going to get the money to pay for it with schools and autism service groups nationwide in a state of fiscal collapse?

7 more annotations...