A More Positive Vision: Letter to The Boston Globe · 2005-08-04 17:31

The following letter was published in the North Shore edition of today’s Boston Globe:

Doctors must be more supportive about autism

To the Editors:

I read with interest your articles on autism (Dose of Precaution and New Autism Agency Welcomed, Globe North, July 28). Although the first quoted one mother convinced that thimerosal was responsible for her son’s autism, and referred to campaigners recently gathered in Washington, D.C. to promote their legislative agenda, there are many more parents who do not suspect that our children’s development is atypical because they have been “mercury poisoned.” Scientific studies supporting anti-thimerosal activists’ claims are often of dubious value, produced by expert-witnesses who profit from conflict over vaccines, parents emotionally invested in proving pre-existing beliefs, and professionals marketing detoxification products and services not FDA-approved for treatment of autism.

The way that a doctor presents a diagnosis can strongly influence parents’ response to it. Although autistic individuals face significant challenges throughout their lives, it is irresponsible for a doctor to automatically predict that an autistic toddler “will probably never speak.”

Such a scenario derives from outdated definitions of autism that relegated the label to severely impaired children. In fact, 90% of children on the autistic spectrum develop speech by the age of nine.1

As diagnostic criteria have broadened and understanding of autism has evolved, so too must clinicians support parents in formulating a realistically positive vision of their children’s future.

Sincerely,

Kathleen Seidel
Peterborough, N.H.
July 28, 2005
(published August 4, 2005)

1 C. Lord, S. Risi, A. Pickles, “Trajectory of language development in autistic spectrum disorders,” in Developmental Language Disorders: From Phenotypes to Etiologies, edited by Mabel L.Rice and Steven F.Warren (Lawrence Erlbaum Associates, 2004)

Comments


  1. Bravo, Kathleen!

    I hope that there are no longer any responsible doctors out there who tell parents that their autistic 3 year-old “will never talk”. I realize that my hope is probably misplaced, since many of the self-styled “autism doctors” tell the parents of their patients just that, with a twist.

    They say, “Your child will never talk…unless you use my cream, injection, supplements, etc…”

    The plain fact of the matter is that the diagnosis of “autism” is essentially useless information to a parent. Most diagnoses tell you at least one of the following three things:

    [1] What caused the problem.
    [2] What treatment to use.
    [3] What to expect in the future (prognosis)

    These three answers are the main reasons that doctors bother to MAKE a diagnosis. A diagnosis of “autism” provides none of these.

    Especially in the case of prognosis, “autism” is a useless diagnosis. A child who cannot talk at age three may be nearly neurotypical at age eight (as happened with my youngest son). Likewise, a child with a similar presentation at age three may still be unable to talk at age twenty (like the son of our good friends).

    So, to tell parents anything concrete about the future development of an autistic child is to admit that you don’t know anything about the condition. I only hope that this message is getting out to parents.

    Similarly, the ongoing rhetoric from the likes of L. Schafer and D. Kirby would have us believe that autism is mental oblivion and a sort of living death. What baloney! They have no idea what autistic people are capable of doing or thinking and neither, it should be noted, do I. However, I am willing to admit that my lack of knowledge about the internal mental state of people does not equate to a LACK of mental state in said people.

    What Schafer, Kirby and the rest are pushing on the public is fear – fear of the unknown and unknowable other. It is a species of racism in its ugliest form that advocates not just a second-tier status for autistic people, but labels them as sub-human. This is a truly frightening strategy being used by people who – I fear – have no idea what they are doing or where they are going.

    Jim Laidler
    Portland, Oregon USA — Jim Laidler    2005-08-05 02:26    #