Pediatrician Claims to Speak for Autistic Children About Diagnostic Changes
One of the problems with being a member of a minority group is that people who know nothing about you feel free to make ridiculous claims about your group in order to make a point they think is important. This happened recently when white, middle-aged columnist Gene Marks wrote a blog post about what he would do, and how he would feel, if he were a "poor black kid":
If I was a poor black kid I would first and most importantly work to make sure I got the best grades possible. I would make it my #1 priority to be able to read sufficiently. I wouldn’t care if I was a student at the worst public middle school in the worst inner city. Even the worst have their best. And the very best students, even at the worst schools, have more opportunities. Getting good grades is the key to having more options. With good grades you can choose different, better paths. If you do poorly in school, particularly in a lousy school, you’re severely limiting the limited opportunities you have.
And I would use the technology available to me as a student. I know a few school teachers and they tell me that many inner city parents usually have or can afford cheap computers and internet service nowadays. That because (and sadly) it’s oftentimes a necessary thing to keep their kids safe at home than on the streets. And libraries and schools have computers available too. Computers can be purchased cheaply at outlets like TigerDirect and Dell’s Outlet. Professional organizations like accountants and architects often offer used computers from their members, sometimes at no cost at all.
Marks didn't really bother to learn anything about what it would be like to be someone different from himself, or he would at least know that over a third of households in the United States do not have broadband internet access, and that the people who don't are largely (guess what) either poor or members of minority groups.
And the entire concept of the piece is puzzling-- why would anyone care what this guy would do if he was someone he is not? Wouldn't it be more interesting to find out what someone actually in that situation thinks?
Something similar happens in a blog post from Dr. Claudia Gold that purports to give "A Child's View" of the controversy surrounding the proposed changes to the diagnosis of autism in DSM-5:
Child's voice. " I am very smart and tuned in to everything happening around me. I get overwhelmed when there are a lot of people. I love music, but I hear every sound so intensely that I need to cover my ears. Sometimes I run around in circles to help myself calm down. When grown-ups make me go somewhere that is too loud or confusing, I lie down on the floor and scream. When people get too close I cant' stand it. Sometimes I hit the other kids when this happens and now I can't go to preschool. My parents fight all the time about what to do about my difficult behavior. My little sister is very quiet because she knows to get out of the way when I am having trouble"
Adult's voice. "He has Autism"
Cue the chipmunk:
Dr. Gold is not basing this on the perspective of any actual autistic person. She is a pediatrician who has written a book called Keeping Your Child in Mind: Overcoming Defiance, Tantrums, and Other Everyday Behavior Problems by Seeing the World through Your Child's Eyes.
I actually agree with Dr. Gold on some crucial things: we are both alarmed by the rate at which children are put on powerful psychotropic drugs and the role that money has played on the policies that cause that to happen:
The last decade has seen an explosion of psychiatric diagnoses in young children, and with them an exponential growth in the number of children on medications. This is due in large part to marketing by the pharmaceutical industry combined with our society's expectation of a quick fix.
Managed care has also resulted in limited access to mental health services. To earn a living and cover the cost of the staff required to administer a practice accepting many insurance plans, primary care doctors are forced to see more patients in less time. Prescribing psychoactive medication is a common endpoint of all of these trends. Our society is at risk of raising a significant proportion of the next generation on psychotropic medications. To change this, a paradigm shift is needed in how we think about children, behavior, and relationships. Contemporary attachment theory offers such a paradigm.
If an autism diagnosis results, as it often does, in a child being unnecessarily put on Risperdal, then I think Dr. Gold and the chipmunk are right that it's a pretty scary thing.
But she looks at autism only through the lens of what she specializes in and the way autism is unfortunately defined by both the medical and the educational communities: as a set of problematic behaviors. That's not what it is, though: it is a neurological difference having to do with hyperconnectivity in the brain. When we learn things, our brains physically change. For those of us who have autism, those changes are more dramatic, and our brains simply develop in unusual ways. You can see a great example of this in the comparison of Temple Grandin's brain to a typical brain from this 60 Minutes piece:
Dr. Grandin's brain is on the left. Click image to see larger.
Even if you makes the problematic behaviors go away, the neurological differences will still be there. This is the problem with the way that Dr. Gold would treat the hypothetical child whose words she invents above. I'm going to go through this paragraph sentence by sentence, because each one takes her further and further away from taking seriously the reality of autistic people:
Certainly this child and his family need help.
Okay, no argument there.
An occupational therapist consulting in the school setting would be able to help this child give words to his experience.
The first problem is the word "would" instead of "might." Dr. Gold writes as though currently available behavioral interventions were guaranteed to bring speech to children, and that is far from the case. She does not take seriously the issue of language impairment or cognitive differences.
She could support both the teachers' efforts to understand what environments are challenging and how to manage these challenges.
This is wonderful, as far as it goes. Too often, this step is overlooked, and managing the environment can eliminate many problematic behaviors. But an autistic child is often going to also need specialized instruction that matches the unique way in which his brain has grown. Dr. Gold sort of acknowledges this:
She might even recommend a different school setting that is more compatible.
But what would that "different school setting" look like? Is it an institution? A private school? What will they do for the child there? Will they not need a way of describing his unique challenges? Will that not amount to a diagnosis?
A therapist working with parents and child together would similarly help them as a family to manage this child's unique biological vulnerabilities.
Autism is neurological and does not come with "unique biological vulnerabilities." Dr. Gold is a pediatrician, and if she does not know that, she is an ignorant and dangerous one. I guess she thinks all children have "unique biological vulnerabilities"? That seems equally dubious, and dangerous.
Claudia Gold is doing to autistic people what Gene Marks did to African Americans: she is claiming to speak for us and using us to generate publicity for herself and for her pet ideas. She worries that a child's "'true self' might be lost in the face of such a frightening label" and she thinks that "the diagnosis with a psychiatric disorder reduces the complexity of his experience to a label that by its very nature indicates that there is something 'wrong with him.'"
And, again, Dr. Gold simply does not understand that autism is not a psychiatric disorder. It is a neurological difference. The majority of the autistic people I know see their diagnosis as confirmation that there is NOT something wrong with them. Even as children, we are given the message that we are stupid and lazy, and that we act differently from others because we are selfish people who choose to do so. Autistic children, for the most part, know that they are different. A diagnosis tells that there is a reason for that other than that they are bad.
Dr. Gold would know how autistic people feel about their diagnoses if she had actually bothered to talk to any. I wrote and asked her. She didn't.
She just wanted to complain about the control that insurance companies have over services and sell her book. And those are both fine things to do. But she doesn't know any more about what it is like to be an autistic person than Gene Marks knows about what it is like to be a poor black kid. And, like him, she doesn't care: we are just a means to an end.