flawed NDIA approach implicitly blames parents for autism

Submitted by bobb on Wed, 15/10/2014 - 19:12

The National Disability Insurance Agency (NDIA) adopted a flawed approach that blames parents implicitly for their child's autism and poor long-term outcomes. The NDIA is charged with funding early intervention for children with disability … and “disability” includes autism spectrum disorder (ASD). The NDIA's Operational Guideline – Access – Early Intervention Requirements can be downloaded here.

As well as describing the NDIA's eligibility criteria for ASD as gobbledygook (see here), community members regards the NDIA's approach to Early Intervention for children with ASD as flawed. The NDIA adopted the “Seven Key Principles” approach described in a document from a “Workgroup on Principles and Practices in Natural Environments” (see download page here)

There are strong feelings in the the ASD community that the principles the NDIS suggest/adopted are dangerous, misleading and offensive. The NDIA's early intervention principles ignore the relevant science and deny children effective treatment for their ASD. Clearly, the principles were written by someone/persons who are not informed about intervention, treatment or the science of intervention for ASD. Members of the ASD community are deeply disappointed that this document is used as the NDIA's official position on early intervention related to ASD.

The document:

  • has a strong bias for early intervention within the family as the “natural environment” for young children.

  • completely omits any ASD-related evidence base for its various claims and assertions.

The first “Key Principle” says

1. Infants and toddlers learn best through every day experiences and interactions with familiar people in familiar contexts.

If this were true (universal), children with ASD who spend most of their time in family settings would not develop stereotypical and repetitive behaviour; but children with ASD do develop atypical behaviours that are definitive features of ASD, behaviours that are rarely (if ever) learned “through every day experiences and interactions with familiar people in familiar contexts”. If children with ASD “learn best through every day experiences and interactions” then ASD would simply not exist: and average diagnosis rates for ASD in children would not now exceed 1 in 70 children in USA and Australia – see here.

Basically, this alleged “Key Principle” expects that children with ASD observe and imitate others in their “natural environments”. But many young children with ASD do not imitate others – many children with ASD need to be taught basic skills like how to imitate others when they are asked to “do this”. Research shows that most children with ASD can be taught to imitate (and other relevant basic learning skills) through intensive individual programs in ASD-specific settings. This is conclusive proof that there are essential skills that children with ASD simply do not always “learn best” in “natural environments”. Anyway, school should also be seen as a “natural environment” for children's learning.

Clearly, Key Principle 1 for early intervention (EI), as adopted by the NDIA, is inappropriate for children with ASD.

Repeated research reviews report that children with ASD need intensive ASD-specific early intervention (see here). “Best practice” early intervention for children with ASD always involve appropriate, often graduated, elements delivered in increasingly naturalistic settings … skill development and practice in natural settings is essential for skill generalisation. But rarely is it the case that a child with severe ASD “learns best” in exclusively naturalistic settings as the NDIA claims.

The other six so-called Key Principles are also unsuited to children with ASD and their families.

Everyone needs to realise that children diagnosed with ASD have serious difficulty with communication and behaviour, and often sensory issues, that impact significantly on their learning. Rarely is better parenting sufficient to reduce or overcome difficulties that a child with ASD has with learning, communication and social involvement.

The NDIA's flawed belief that better parenting is the best early intervention for children with ASD insults parents of children with ASD. Most parents, especially mothers, of children with ASD already take enormous steps to be the best parents they can possibly be. On what basis does the NDIA believe it can offer parents of children with ASD programs that make them better parents; that most of these parents do not already practice near-optimal parenting? Where is the NDIA's evidence that non-ASD siblings also suffer from lesser parenting?

The NDIA ignores evidence (see the recent relevant Cochrane Review) that parent-mediated programs are unlikely to significantly improve outcomes for children with ASD; that parent-mediated programs do not deliver optimal outcomes for ASD. A journal editorial says:

A recent meta-analysis comparing studies of parent- and clinician-implemented interventions for children with autism found significantly greater improvements in clinician-implemented studies with small to no effects in parent-implemented studies. See http://aut.sagepub.com/content/19/3/259.full.pdf+html

Why does the NDIA want parents to be devastated when their solo efforts have little success? The NDIA's approach to EI for ASD is demeaning and cruel ... even prejudiced.

The NDIA continues its unfounded blaming of parents for their child's ASD ... along the lines of the discredited “refrigerator mother” hypothesis described here and here. The NDIA's “make better parents” approach just returns to cruel and ineffective blame-the-parents public policy on ASD. It devastates families, especially undermining mothers' self-esteem, and benefits no one.

Blaming parents for their child's ASD is especially attractive to Government agencies like the NDIA who can offer/provide cheap, simplistic and ineffective parent training programs. Government perceives there is no need to follow up after these programs with any proper evaluation of program effectiveness. If children with ASD don't experience better outcomes then it is easy to blame parents for not following advice properly … Government just ignores research showing clearly that its basic approach is flawed.

The NDIA's misguided/flawed approach to EI for ASD increases enormously long-term costs to families affected by ASD (see here) and to the community generally (see here). The NDIA's refusal to fund best practice EI for ASD is just massive fiscal irresponsibility.

The NDIA was surprised to find that ASD is the biggest distinct type of primary disability among NDIS participants in its recent progress reports (for example, see here). It really is time that the NDIA engaged with the ASD community.