An Autism Diagnosis: Key to Unlocking Needed Services?
photo by stevendepolo via flickr
Michael Poreda’s excellent post yesterday called attention to what looks to be a fascinating panel discussion — “Serving Urban Students With Autism: Newark, New Jersey” — to be held here at Seton Hall Law on April 5th. Michael interviewed Leslie Long and Michele Adubato — Adubato will be speaking on the panel — of Newark’s North Ward Center which plans a 2011 launch of a new initiative to better serve individuals living with autism in Newark.
In his post, Michael writes that he “wanted to know if students with autism in Newark were getting the same services as students elsewhere in the New Jersey, and if not, whether law or policy played a role in the disparity.” He goes on to highlight a number of areas of potential disparity between Newark and New Jersey’s suburbs and towns, all disturbing.
I was particularly troubled by Michael’s report that the Newark schools’ wait-and-see approach to diagnosing children with autism leads to children from birth to age three being denied (or simply not accessing) early intervention services. There is nothing wrong in theory with waiting and seeing with regard to diagnosing an infant or toddler with autism. I believe the choice to wait-and-see is one that parents should be free to make in consultation with their baby or child’s healthcare providers. That choice is in no way free if advocating for and/or accepting an autism diagnosis is the key to accessing needed services. (My previous post on the pressure parents can face to accept the diagnosis is here.)
In my opinion, early intervention services should never be linked to a diagnosis; they should always be based on the demonstrated needs of the individual child. A key takeway from the dispute over the inclusion of Asperger’s Disease in the DSM-V is that while diagnoses of mental disorders can no doubt be useful in certain contexts, they are also mutable and political, describing and potentially shaping a complicated reality. They seem a shaky basis for divvying up scarce educational resources amongst very young children.
In New Jersey children do not, legally, need to be diagnosed with autism — or any other -ism — to access early intervention services. A child with an autism diagnosis is presumptively eligible for early intervention services, but that same child could also qualify without the diagnosis, based only on his or her individual developmental delays. After a child turns 3 and is no longer eligible for early intervention, a diagnosis is still not (supposed) to be the key to services. In New Jersey, a child between the ages of 3 and 5 with developmental delays can qualify for special education as a “preschooler with a disability.” N.J.A.C. 6A:14-3.5(c)(10). I wonder whether the use of these avenues to accessing services is more common in the New Jersey suburbs than in Newark– and whether this is yet another disparity.
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The not-for-profit LENA Foundation now offers the LENA Language and Autism Screen (LLAS), a three-part assessment for children ages 24-48 months. The LLAS enables speech-language professionals to automatically and objectively screen for autism. After analyzing a child’s vocalizations, we provide a score and probability for the likelihood of autism. Parents can order the screen as well, allowing them to bypass the “wait and see” attitude and get on the road to treatment, if necessary.