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Tuesday, December 11, 2012

Older Parenthood and Autism

Previous posts have discussed the association between parental age and ASD. Judith Shulevitz writes at The New Republic:
We have been conditioned to think of reproductive age as a female-only concern, but it isn’t. For decades, neonatologists have known about birth defects linked to older fathers: dwarfism, Apert syndrome (a bone disorder that may result in an elongated head), Marfan syndrome (a disorder of the connective tissue that results in weirdly tall, skinny bodies), and cleft palates. But the associations between parental age and birth defects were largely speculative until this year, when researchers in Iceland, using radically more powerful ways of looking at genomes, established that men pass on more de novo—that is, non-inherited and spontaneously occurring—genetic mutations to their children as they get older. In the scientists’ study, published in Nature, they concluded that the number of genetic mutations that can be acquired from a father increases by two every year of his life, and doubles every 16, so that a 36-year-old man is twice as likely as a 20-year-old to bequeath de novo mutations to his children.
The Nature study ended by saying that the greater number of older dads could help to explain the 78 percent rise in autism cases over the past decade. Researchers have suspected links between autism and parental age for years. One much-cited study from 2006 argued that the risk of bearing an autistic child jumps from six in 10,000 before a man reaches 30 to 32 in 10,000 when he’s 40—a more than fivefold increase. When he reaches 50, it goes up to 52 in 10,000. It should be noted that there are many skeptics when it comes to explaining the increase of autism; one school of thought holds that it’s the result of more doctors making diagnoses, better equipment and information for the doctors to make them with, and a vocal parent lobby that encourages them. But it increasingly looks as if autism cases have risen more than overdiagnosis can account for and that parental age, particularly paternal age, has something to do with that fact.
Not only are older parents more likely to have kids with autism and other neurological conditions, but they are also more likely to die earlier in their children's lives.  The death of a parent is tough for any child, but it's a calamity for a special-needs child.
All these problems will be exacerbated if we aging parents are, in fact, producing a growing subpopulation of children with neurological or other disorders who will require a lifetime of care. Schizophrenia, for instance, usually sets in during a child’s late teens or early twenties. Avi Reichenberg sums up the problem bluntly. “Who is going to take care of that child?” he asked me. “Some seventy-five-year-old demented father?”
This question preys on the mind of every parent whose child suffers a disability, whether that parent is elderly or not. The best answer to it that I’ve ever heard came from a 43-year-old father I met named Patrick Spillman, whose first child, Grace, a four-and-a-half-year-old, has a mild case of cerebral palsy. (Her mother was 46 when Grace was born.) In his last job, Spillman, stocky and blunt, directed FreshDirect’s coffee department. Now, he’s a full-time father and advocate for his daughter. He spends his days taking Grace to doctors and therapists and orthotic-boot-makers, as well as making won’t-take-no-for-an-answer phone calls to state and city agencies that might provide financial or therapeutic assistance. How does he face the prospect of disappearing from her life? A whole lot better than I would. (My lame-joke answer, when my children ask me that question, is that I plan to live forever.) “We’re putting money aside now,” he said. Into a trust, he adds, so that government agencies can’t count it against her when she or a caregiver goes looking for Medicaid or other benefits.