Inclusion and community

One of the most difficult things we have to unlearn is fear and disgust towards the different. Many people measure the world according to themselves, based on what is normal or typical for them. What is familiar is safe, what is unfamiliar is dangerous. When this kind of attitude becomes so ingrained in our core that it is no longer subject to doubt or question, it can have devastating effects both on society and individuals. Innovation is stunted and minorities are persecuted, all because we are unable to broaden our horizons and open our hearts. In few cases is this as evident as the situation of the neurodivergent in our society.

The last week of January was National Autism Consciousness Week. This annual event is a creation of former president Fidel Ramos via Proclamation 711 which came into effect in 1996 – and yet awareness and support for those with autism is still far from ideal. This in spite of the fact that approximately half a million recorded instances of autism were recorded in the Philippines as far back as 2009. This number includes my sister Mariel, who was diagnosed with autism in 1984.

Back in the 80s it was difficult to get proper treatment for autism spectrum disorder (ASD) in the Philippines. My sister had to go to the United States in order to be able to address her needs and support her development.

Although people with ASD need treatment, autism is not a disease. ASD incorporates a group or spectrum of neurodevelopmental differences which can cause disruptions or impairments in communication skills and social skills.

It was first defined as a rare childhood disorder in 1943, and while it was discovered practically simultaneously by persons Leo Kanner and Hans Asperger, at first it was Kanner’s interpretation of it that spread. Kanner had a strict diagnostic criterion for autism and he placed a large degree of blame on the parents that he referred to as “emotional refrigerators.” Even if it became accepted later on that autism is something inborn, we can see here why autism was born as something that was shameful and hidden, a cause for stigma and guilt.

Since those early days, our understanding of autism has evolved. While it can be reliably diagnosed at an early age, it is not something that only affects children. It is not “rare” as Kanner once believed, and the number of cases discovered in modern times is not due to any sort of surge (and definitely not due to vaccines, a lie based on a single discredited and debunked claim) but simply because it was not possible to be diagnosed with autism before, and because the definition of what autism is has broadened through the years. The idea of autism as a spectrum condition – one which can express itself in a wide variety of ways and severities marked by a family of symptoms such as social awkwardness and a fascination with rules and schedules – was one of the most important changes.

Yet to this day there are many myths about autism that continue to circulate. It’s important that we remember the following:

• People with autism are no more likely to be violent than neurotypical persons: Autism has nothing to do with violent tendencies. Many people with autism are, however, highly sensitive to their environment, and this may make some of them vulnerable to sensory overload, and the triggers for this vary from one individual to the next. The response by the autistic person to this overload can be agitation, restlessness, fear or anger (amongst others) and to an outsider this may seem like violence.

• People with autism do not always have savant-like abilities: When the media portrays autistic persons, there is a disproportionate tendency to portray them as savants in one discipline or another, particularly math or science. While many autistic people do excel in specific subjects – and many are excellent learners with a strong memory – not all do so or not in math and the sciences.

• People with autism do not lack empathy: Many people with autism are very concerned about the feelings of others. It’s simply that many people with autism have difficulty processing the social signals that neurotypical people use to express their emotions.

• People with autism do enjoy friendships: Similar to the above, this is a misconception brought about by the difficulty faced by some autistic persons in learning and deploying the social cues, particularly non-verbal ones, that neurotypical people take for granted. However, the fact that it is difficult for them to socialize in typical ways does not mean autistic persons cannot form friendships or do not want friendships.

The past two years have been difficult for all of us, but these have exceedingly been so for autistic persons, particularly the young. Economic hardships lead to less money for the therapy that can help children with autism learn to navigate the outside world; closures and restrictions can eliminate safe options and routines for food or play that the children have become attached to; remote schooling can also prove to be a difficult disruption to navigate.

Autism is not a disease, but those with autism do have a disability that places obstacles before them that most neurotypical individuals will not have. I’ve written about disability in this column before, and what I wrote then still stands: In many cases, what makes a person “disabled” is caused by the refusal of society to take their needs into account – a second floor only accessible by stairs is inaccessible to a person using a wheelchair, but one with a rampway is not. In the case of autism, the imperative for society to adapt to the special needs of autistic persons is all the more urgent, because what they need is much less straightforward than a ramp.

For our society to be one that includes and embraces autistic persons, we must be able to ensure that we support systems and mechanisms that can diagnose the condition, provide proper referrals, enable access to therapies and specialists and educate the population about the realities of those living with autism. We must take to heart that people with autism are not broken subjects that need to be fixed, but simply our fellow human beings with different groups of needs than those of the majority.

Let us include, let us integrate and let us understand.