Parents of children diagnosed on the high functioning side of the Spectrum confront the quandary of whether concealing their kids’ diagnoses in avoidance of discrimination, or disclosing them to educate others on the many layers of the Autism Spectrum Disorders (ASDs).
There is, however, a third alternative which would involve pursuing classifications related to Sensory Integration Dysfunctions (SID). The presence of multiple sensory input and output difficulties is an appropriate way to easily explain many of the challenges faced by children under the so-called High Functioning Autism (HFA) category. Furthermore, terms such as “sensory processing” and “functional integration” sound less stigmatizing than the word Autism, and the fact of the matter is that behind many of the Autistic traits in high-functioning children, there is a sensory integration dysfunction that can often explain such behaviors.
There is undeniably an emerging group of children that are initially diagnosed as Autistic (mostly to allow them to receive Early Intervention services) who, as they grow up, start falling under what the American Psychiatric Association calls sub-groups – the “almost but not quite” Autistic; those who either don’t manage to fully present the Autism criteria, or who show traits of Residual Autism. Should they continue being called Autistic?
Furthermore, there are children who seem Autistic merely because their brains have a hard time in processing sensory information, those who are over- or under-sensitive, who present inadequate vestibular or proprioceptive systems. Should they also be called Autistic? These disorders cannot be officially recognized as “…many psychiatrists, pediatricians, family doctors and school officials fear that if validated, sensory processing disorder could become rampant – a vague diagnosis that could stick insurers and strapped school districts with enormous bills for unproven therapies” (The Disorder Is Sensory; the Diagnosis, Elusive, The New York Times, 6/5/07).
The fact remains that to receive therapeutic services, and in order to be placed in appropriate schools, many of these children must still be called Autistic; a strong and heavy label that will accompany them throughout their entire life.
In New York City, the best public schools (see Nest below) that serve the educational needs of high functioning children require that the students are labeled as Autistic. A label that, ironically, parents (in this instance) receive as a blessing, as the confirmation of such diagnosis is pivotal to get their kids into this outstanding school program.
Conversely, some of the sought-after non-public schools (funded through the Department of Education) that host a population of HFA children will categorically reject any application if the word Autism or Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) is ever mentioned in a private psychoeducational evaluation (which, by the way, will cost a parent between $4,000 to $8,000). The information about the right wording needed for each school is unofficially shared and passed on from older to younger parents via blogs and support groups. Well informed parents applying to private (though funded) schools know when to openly flaunt their kids Autism or PDD-NOS diagnoses, and when to disguise them under terms such as “learning disabilities” or “sensory integration dysfunctions” to effectively tailor the language in accordance to the schools’ tacit preferences.
The lack of unified criteria between private-funded and public institutions adds a burden onto the parents, who end up shopping for a diagnosis given the educational vacuum that exists for the higher functioning population – in particular the kids who are not Autistic enough and do not quite have Asperger’s Syndrome either. Nevertheless, their ordeals might be invisible to the untrained eye, but remain strong throughout their academic years.
The United Nations took notice of the worldwide need for increased understanding of the disorder when, in 2007, the General Assembly declared April 2nd as World Autism Awareness Day. Despite the UN’s and other organizations’ information campaigns, societies still tend to believe that all individuals with Autism should suffer from either lack of language or mental retardation, or both, in co-morbidity.
So, what is it in the Autism label that is so damaging to a high functioning youngster? The drawback lays in the stereotypes that still are, and will most likely remain, embedded in the notion of Autism. This regrettably limits the potential of those who are diagnosed with PDD-NOS as toddlers and infants but who, thanks to an effective early intervention, show immense progress with emerging social and cognitive capabilities, receiving excellent prognoses from educators, developmental doctors and psychologists, with high possibilities of a full insertion in society later in their lives.
However, sticking an Autism tag on the forehead of a child that is, most certainly, expected to get married, go to college, get a job and give back to society, will invariably bring about social isolation, anxiety and depression at some point in their lives. Anecdotal stories from parents mention suicide attempts by their HFA and Asperger’s teenagers who need to deal not only with the common age-related struggles, but with the consequences of having been exposed to society as Autistic in order to receive related services and curriculum accommodations. Many teenagers feel the frustration of being reduced to something that, no matter what they do, they will never be able to get rid of. Besides passionately increasing awareness about Autism at large, is there any other way to lessen the negative impact and weight of the disorder’s name on the high-functioning community?
At this rate, the solution is giving it a new term, one with less severe connotations.
Autism is seen, as many other disabilities and conditions, as either black or white, while it begs to be seen as a colorful rainbow. The big disparity within the two ends of the Spectrum poses the dilemma on whether awareness efforts should continue to take place under a “catch all” Autism umbrella, or if there shouldn’t be an urgent revision of labels and diagnostic methods towards a clearer categorization and differentiation.
While the Autism diagnosis empowers a stratum of the Autism population (those with full blown Autism), it equally hinders the fight of those with a mild condition, who at the other end of the Spectrum, must simply spell out their condition as “Autism” since there is no other available term.
As we witness an evident need to review the broad use of the Autism sticky tags on kids, there is an even more immediate, and long predicted, emergency: The need for the Board of Education to appropriately address the educational needs of this growing population.
Fortunately, there is already an exceptional and cost-effective response to this dilemma.
The ASD Nest program in New York City (http://schools.nyc.gov/Academics/SpecialEducation/EducatorResources/About_ASD.htm), developed and implemented by New York University in 2003, is a unique Integrated Co-Teaching program developed for higher functioning children with ASDs. It is carried out in neighborhood public schools to help children with ASDs become exposed to typically-developing peers while learning how to appropriately function academically, behaviorally, and socially.
The program is similar to the Collaborative Team Teaching (CTT) model; however the classes are smaller and include 10 to 20 general education students, 4 Special Education students (ASD as the only disability) and three teachers (General Ed, Special Ed and Cluster teacher) all trained in Autism. Working with therapists and specialized teachers, combined with the constant exposure to mainstream peers, children on the high functioning side of the Autism Spectrum improve their social and communicative skills and develop effective self-regulation strategies.
The current infrastructure only accommodates children until their fifth grade, though, given its success, there are already initiatives in place towards expanding the ASD Nest public schools and replicating the model in middle and, hopefully, high schools.
It is essential for parents, therapists and educators to continue to work closely to ensure that this emerging population receives the necessary treatments and education, with views towards their full integration in society, free of stigmatizing labels.
Jacqueline Aidenbaum, MA, is one of the main forces behind the General Assembly designation of April 2nd as World Autism Awareness Day. She works at the United Nations.