Not ready for introduction of routine screening for autism? Clarifying the issues.

Autism

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There is a newly published journal article in Pediatrics, called “Early Autism Detection: Are We Ready for Routine Screening?“, that is causing a bit of concern and upset, since it’s conclusion is that we are not ready for the roll-out of routine screening. The news articles I’ve seen about the finding, were not particularly informative and even at times inflammatory; so I decided to read the article for myself and see what was really being argued, and why.

Essentially the researchers set out to answer seven questions that can be used to judge the effectiveness and worth of introducing routine screening. “Routine screening” is different from “clinical surveillance”, in that the latter is targeted at people already likely to have the condition (they show signs that concern parents or professionals, or family history, etc), and routine screening is directed at every child – even with no reason to have previously suspected autism or any other health concerns.

The seven questions the researchers answered, came from a 1984 paper called “Assessing the effectiveness of community screening programs.” Which is to say they were applying a previously recognised and respected approach to addressing whether community screening would be advisable. Those seven questions are:

  • Question 1: Has the Effectiveness of the Screening Program (for That Condition) Been Demonstrated in a Randomized Trial?
  • Question 2: Are There Efficacious Treatments for the Primary Disorder and/or Efficacious Preventive Maneuvers?
  • Question 3: Does the Current Burden of Suffering Warrant Screening?
  • Question 4: Is a Good Screening Test Available?
  • Question 5: Will the Screening Program Reach a High Proportion of the Persons for Whom It Was Intended?
  • Question 6: Can the Health Care System Cope With the Screening Program?
  • Question 7: Will Those With Positive Screen Results Comply With Subsequent Advice and Interventions?

Their conclusion: “On the basis of the available research, we believe that we do not have enough sound evidence to support the implementation of a routine population-based screening program for autism. Ongoing research in this field is certainly needed, including the development of excellent screening instruments and demonstrating with clinical trials that such programs work and do more good than harm.”

In order to attack their conclusion that – at this point in time – routine screening for autism is not a good option, you’d need to either declare some of the questions above to be irrelevant (depending of course of the particular finding for each question; no point knocking down a factor that didn’t weigh one way or the other in their conclusion), or you’d have to attack their findings in regards to answering each question.

From my own reading on the research they collated and discussed in answering those questions, it seems that the conclusion they reached was quite sound and highly justifiable. In fact, in reading the article, I learnt a lot I didn’t previously know. For that learning alone, it was worth reading the original piece.

The news articles (and indeed, some of the blog posts I have seen on this news item), didn’t do the study justice, even twisting the story. If you’re feeling particularly emotional about the notion that routine screening for autism is extremely important and should be rolled out asap, set aside the not-extensive amount of time it takes to read the article, and see if it changes your mind.

My personal perspective on this is partly coloured by the country I live in, since New Zealand already has regular development check-lists and questionnaires built into a child’s visits to their doctor (or other chosen provider) during the first five years of their life. The checks are not tied to immunisation appointments (though they often coincide because that makes sense), and they don’t have to be done by a doctor at a doctor’s clinic, so they should capture people from all walks of life and of all attitudes.

These check lists are not specifically tailored to autism, they pick up on hearing, sight, and other developmental concerns. But it makes sense to have broad ranging questions; filling out a detailed questionnaire for every conceivable issue a child might have, despite no reason to suspect a problem, raises the sorts of harms and concerns directly addressed in the article.

My own autistic son was completely let down by these checks, which were picking up on his developmental delays and other issues, but were not being treated as noteworthy or important by the “professional” who was performing these checks. In fact, they were dismissed as my over anxiousness related to being a first-time mother, and where they were acknowledged at all, it only lead to critiques of what I must be doing wrong as a mother. But I am objective enough to recognise that those were attitude and ignorance issues on behalf of the professional, and my complaint about the person’s conduct in relation to my son’s case has since being dealt with, so I at least feel that her error has been acknowledged and addressed. Crappy professionals are always a risk; the checks were still doing their job. (My son was eventually diagnosed at three years-old, because I brought our concerns to a doctor, who referred us on to a developmental pediatrician. His autism was severe enough that it should have been identified much earlier than three.)

To form an opinion on whether “more” than what is currently provided, is needed in overseas countries, I’d have to know more intimately how their pre-school and development screenings are conducted. At least from a New Zealand perspective, it seems to me that adequate systems are in place, they just need adequate professionals to respond to them.

Regardless of one’s country and that country’s existing practices, it seems to me that the conclusion that it is not a good time to roll out routine screening for autism, stands firm, since the conclusion is based on evidence re tests and therapies that are not limited by geographical zones. If people feel that more must be done than is currently done, to find and help autistic children, then that is not the same argument that there should be routine screening. It seems that a lot of the outrage I’ve seen so far is misdirected, since those outraged people are concerned about how we must “do more” for the children, but erroneously think “more” equates with routine screening.

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