Autism Diagnosis

Parents in denial, fearful of Special Education tag

Parental denial of autism diagnosis is a difficult barrier to deal with in autism reporting, education and caregiving. Parents don’t want the truth. They cannot comprehend this complex condition, which is a mesh of neuroscience and clinical psychology terms. Families are devastated and go into a shell. They somehow want their child’s autism to vanish. This mindset makes them a vulnerable target of charlatan groups pedaling ‘cures’ and worse still, victims of superstitions which in India is rampant.

Autism is a lifelong set of developmental conditions. It is not a ‘disease’ which can be cured or treated. If you are autistic today, you will be autistic tomorrow and the day after. Autism will not go away by feeding this or that animal or circling any number of trees. Rest assured, no ghost is chasing your child. Such superstitious beliefs abound in India and they are acted upon for they are received as granny wisdom, even by educated sections of the society.

Yes, grief is enormous. Accepting and understanding autism takes time.

If there are atypical aspects in your child’s interaction with the environment with regard to eye contact, play, gesturing, joint attention, response to language, body movements, if the child shows no social interest, has restrictive and repetitive behavior, engages in self-harm, and is missing speech milestones, alarm bells should go off. Parents should see the signs, act early, and must post for diagnosis. Early detection leads to an early intervention and a healthy prognosis for skill development.

Routine paediatric care focuses on vaccination schedule, usual health checks, while developmental milestone mapping is scant. Many go along with traditional musings that some children speak late, as if it were an accurate datum of medical science. Clinically autism is categorised as a developmental disability that causes significant social and communication impairments. It is detected through standardized screening.

Autism Screening Tests

Of the standardised tests that are conducted for screening Autism, in India, the most prevalent one is CARS or the Childhood Autism Rating Scale. Later, some tests are carried out for behaviour and learning assessments, these help in developing the education and intervention trajectories for the child. VABS or Vineland Adaptive Behaviour Scale (VABS) is generally used by professionals of adolescent psychology in India for pre-teen years. All tests are conducted through observation and parental interviews and administered by a child neurologist, clinical psychologist or a psychiatrist. Data is collected on multi-fold parameters, rating values for all items are given to yield a raw score that is then converted to a standard score or a percentile rank. Guidelines for score interpretation and suggestions for interventions are also included in the report.

Three types of denial

Denial is a three-stage process. First, parents delay screenings either willfully or due to lack of awareness. The second stage of denial unfolds when the parent comes to terms with the autism score of the child. The extent of support a child would require is revealed by the autism score. It also decides whether the child will be able to cope in a mainstream regular class or will go to a Special Education Needs (SEN) setup.

Most parents cannot reconcile their children going to a Special Needs Section. Despite having a diagnosis, they are apprehensive that their children will become autistic just by being in the same class with other autistics and copy their mannerisms. They simply do not realize that you cannot imitate your way into autism. The prejudice against special section is spurred by irrational fears and anxiety over being denied integration in a mainstream class.

Upon receiving a diagnosis, parents must come to terms with certain facts. These are: Autism is a spectrum of developmental conditions that impacts the way people communicate and experience the world around them. Every autistic person is different. Some are able to learn, live and work independently but many require specialist support. The learning, thinking, and problem-solving abilities of people with autism can range from gifted to severely challenged. Some people with autism need a lot of help in their daily lives; others need less.

The third form of denial is prevalent during feedback reporting about the child and efficacy of therapies. Parents find it difficult to set their emotion aside, overcome their disbelief and hesitancy with the diagnosis and make objective summaries about what skill-sets are emerging, supported and independent in their child. For instance, random vocalizations of some sounds or words maybe presented as verbalization (clear meaningful expression of an idea). Or consider a scenario where the child can speak a clutch of words at age 3, there is no back and forth communication, also has some atypical body movements like hand flapping, stimming and restrictive interests, has difficulty switching tasks and is referred for being taught in a special education set up, parents are hugely upset. This is also seen while reporting therapy outcomes. There could either be impatience with progress or over-reporting as seen in the case of unproven therapies like stem cell therapy.

Kristen Bottema-Beutel, associate professor of teaching, curriculum and society at Boston College in Massachusetts in an interview to spectrumnews.org says, parents are invested in seeing their child gain from an intervention and may change the way they interact with their child, which can lead to positive changes — a form of bias called placebo-by-proxy. And parents so want their children to benefit from an intervention that, even in the absence of real improvements, they can subconsciously provide higher ratings on post-intervention reports, an issue known as detection bias, she says.

At the end of it all, acceptance, scientific choices and caregiving improves outcomes. Even if your child goes through the special education route, he is not a lesser child than any of the other children studying in the mainstream schooling system.

Special Education or a child with special needs is not a negative label. It bears no pejorative connotation. It is a knowledge discipline that deserves as much respect as any other. And the autistic child has his own learner profile and personality.

Special Education versus Inclusion

Excerpts of Dr Narayan’s views:

Parental attitudes of negativity towards special education is rooted in denial and the fear of social status. From their perspective, it’s always a nicer feeling to say that their child studies in a regular / mainstream school in so and so class. Every mother has so many dreams about her child but with the diagnosis everything comes crashing. It is very difficult to come to terms with the fact that her child is not like other children. Therefore, so very often we see the parent names the mainstream school where the autistic child studies but does not mention the class / special section. This response happens.

After the diagnosis, the parent goes through several stages. As professionals we need to understand at which stage the parent is in. First is the stage of denial and doctor shopping. If you get an autism diagnosis from one doctor, you go to the second and the third and so on.

The second is the guilt and shame stage. During this time, parents want to be left alone and cut off social interactions. Guilt questions arise like, ‘what did I do wrong’ or self-flagellation for some imagined karmic retribution; it also manifests as blame-game within families.

Helplessness is the third stage, it is the phase of ambivalence, bargaining and where do I go kind of feelings. Parents want the autism of their child to just go away and here they fall for a medley of cures of so-called healers, they want to bargain their way out of autism but this doesn’t work.

Now, Special Education is a highly advanced field of knowledge, it overlays many scientific disciplines, that is how it is taught in universities. But the field of Special Education has not been able to reach out with this message to the educational system. There has to be a sense of pride both at the end of the service provider and the service receiver. In big part, this responsibility is on the Special Teacher Program Educators and Special Educators themselves.

Fundamentals of special education are tailor made lessons, adjusted teacher-student ratios for development of competencies in those with learning differences and preparing them for Inclusion. Inclusion can happen through inclusive education i.e. the child goes to a regular class of say 40 students in a mainstream school and is helped by a special educator, it can happen through specialist education in a special school and also through home schooling. The National Education Policy (NEP), 2020 of Government of India recognizes homeschooling.

The parent has to understand that inclusive education is not the only desideratum for Inclusion. The parent has to assess whether the child will be able to learn anything of value in a regular class where a teacher has to teach 40 other children. Many times, inclusive education setting leads to parent-teacher discord. The child may benefit from a specialized environment in a special section or a special school. There is no one size that fits all. Finally, Special Education has to popularize the concept that their practice domain leads to Inclusion. We have to also remember that India is a family-centered inclusive society, we are habitually conditioned for it. Rarely will a child with developmental disabilities be sent away to an institutional facility. Someone in the family will step up for the child and the child will learn and grow.