I am no expert on Autism and certainly do not claim to be.
However, as I am autistic, I do have a valuable perspective on this existence.
All diagnosable conditions have specific criteria and it is through this categorisation that the inherent dichotomy is established. If a person diverts from the measure of normality, then they have a condition. In the past, having romantic feelings for someone of the same gender was considered a mental illness. Being left handed was a mark of the devil. We have come a long way as a society towards understanding the diversity of human experience. However, there is a lot of work that remains to be done.
The two main criteria used for diagnosis of autism are The Diagnostic and Statistical Manual of Mental Disorders published by The American Psychological Association (DSM-V) and The International Classification of Diseases published by The World Health Organisation (ICO-10). Although the former describes the condition in more detail in comparison to the latter, both mostly define the condition according to deficiencies such as the lack of social-emotional reciprocity and inability to maintain eye contact.
Since the inception of the criteria there have been numerous amendments and updates based on the evolution of the ideas and perception of those who are autistic. This has always been informed by scientific research and will continue to do so. The most recent change for the DSM-V was the removal of the category for Asperger’s Syndrome. When I received my own diagnosis, it was put into practice to use the term ‘Autism Spectrum Disorder’ to apply to all of those who are on the spectrum. The discarded term could still be used for explanation only because so much useful literature already exists that used it.
The idea of the spectrum is important when measuring against whatever normality is. The reason there was a separate category for Asperger’s Syndrome is because of the distinction between high and low functioning autistic people. You are considered to be high functioning the closer you can get to normality. The further away from being normal you are – the lower functioning you are deemed.
This is where I believe there is a confusion about autism; there is an assumption that if you can act normal then you are high functioning. There is also a lack of awareness about the possibility of comorbidity with other conditions. Most ‘low functioning’ autistic people have additional problems such as genetic disorders, learning disabilities and other physically manifesting conditions. The only difference between those who are high or low functioning is whether they have issues in addition to being autistic. Crucially, this often effects levels of intelligence.
Autism itself is a mysteriously complex condition that perplexes even the experts. The incredible potential for genius in people with exceptional intelligence, camouflages the traumatic struggles those with autism endure daily. This is what separates autism from normality regardless of whatever special skills the person demonstrates. There is a reason why we do not use high levels of intelligence as an indicator that the individual does not have autism – a person could have an IQ over 200 and still be autistic and diagnosable according to the DSM-V and ICD-10. I could literally go on all day about intelligence but that is not the point of this post.
Society defines normal as what is acceptable and the changes in the classifications of the human condition reflect this. I had always known I was not ‘normal’ because I was using my own society, my own culture as a measuring rod; I never quite fit in. The reason why Mixed Face became an autobiography and a collection of writings I had produced over the course of a decade was because even after I received my diagnosis, I struggled to find any experiences that reflected my own.
It became apparent that whenever I found a story about an autistic woman, she was never from my own cultural background. Many of the reports of inspiring autistic individuals all have one additional aspect in common: financial support. These differences in societal position all have a large impact on the quality of life which in turn create a significant disadvantage for a mixed-race autistic person regardless of gender. If we are not seen and not heard, do we really exist?
Social issues are a large aspect of autism yet the criteria for diagnosis will almost have you believe that there is a single measure of social interaction that is the same throughout all cultures. Societal expectations of eye contact differ whether you are male or female and whatever part of the world you happen to reside in. Some greetings involve kisses, hugs or simply a handshake and vary according to customs. When we nit-pick each possible social interaction, and lay bare all the possibilities, is it logical to say because person X cannot do the right one at the right time then they are autistic?
There is more to autism than the social aspects which is why there is at least three parts to the criteria: social and emotional reciprocity, social communication issues, and intense interests with restricted behaviour. As an adult I had to meet a fourth criteria relating to sensory issues. This criterion must be satisfied daily and had been constant since birth. It is worth mentioning here that this knowledge was only acquired after diagnosis; going into to the assessment I had tried to avoid any research relating to this condition until experts could verify my claim.
I have since discovered that it is not necessary as an indicator of autism if a child is delayed in their speech. This can sometimes be a sign of select mutism. There are even reported cases of children who are autistic developing swifter than expected and learning to speak earlier than their peers. The ability to speak should not (and in professional diagnostic terms is not) taken to mean that the person does not have communication issues.
Issues with social communication are the reason autism advocacy is so important. We need to be able to communicate the autistic experience so we can inform society of our issues. This is crucial for those who have autism who cannot communicate. Therefore, not only autistic people who can communicate are suited for this role but parents and carers too. The danger here is that when we have those who are considered normal speaking for those who are autistic, a measure of normality is used to make a judgement on the value of the autistic life.
There are many philosophical moral theories that cannot be applied to those who have autism for the very fact that they rely on reciprocal communication of the type that can be challenging for those on the spectrum. Psychological theories of mind also fail to adequately explain the autistic mind because they too use normality as a comparison and fail to reflect the experience of those on the spectrum.
I will never lay a claim to be able to describe the entirety of the autistic experience. The idea that someone can be an expert in this field of enquiry is problematic given the subjective complexity of the condition.
Collectively, all people share the story of their society and it is time that autistic people from across the globe share their story so that one day we can have a collective story of the experience of autism – one that is defined by those who are autistic without recourse to normality.
No two people are alike and no two autistic people are alike. We may have similarities but they will always only be skin deep.