I love the journey of self-discovery. Let me share something with you that I learned recently, something that might surprise those of you who know me: I was recently diagnosed as being on the autism spectrum. To some, it might make more sense if I were to say I have Asperger’s Syndrome, a “high functioning” form of autism without any of the intellectual or speech impairments often associated with autism. That would be true, in a sense. Personally, I prefer the word “autism” because it emphasizes the root concept. Maybe none of this makes any sense at all, to you. I bring it up because I have found it helpful to know about me and others. Let me first explain a little about the history of the autism spectrum in this post, my journey toward diagnosis in a second, and then explain to some extent how being autistic has affected my life in a third.
The History of Autism
Because the human brain is such a “huge, beautiful mess” that is even still only dimly understood, psychologists, psychiatrists, and counselors often have to work through a cloud of unknowing, from the outside in, to understand what makes people tick and how to help them with their life. This is why both scientific and popular understanding of these matters can change so much over time, at different rates, as theories are tested, are often found lacking, and new ideas are pursued. As with most science, medical knowledge is mostly gained by those who need to know it and by their loved ones. I originally wrote this with my loved ones in mind.
People have always known in general terms of the “bumbling” or eccentric on the fringes of society, but often neither they nor the individuals themselves knew exactly where the differences came from. Not necessarily crazy or frightening, some of these people are shy or have “odd ways”, seeming to live in their own world as much as the one they share with others. Some of them have exceptional talents, but may find it difficult to profit from their gifts because of the peculiar way in which they interact with others. For me and many others, autism explains much that is commonly misunderstood or simply seems weird.
Simply stated, autism is the way that some people are human. It has to do with the way that the self (Greek word, “autos”) relates to others. Although many, many other things often accompany and contribute to the condition, the ability for and inclination toward social relatedness is the matter at root. Whether it is classified as a disorder, a condition, or simply a difference seems to depend on who is doing the classifying and whether the related but distinct conditions often present in autistic people are lumped together with it or are considered separately. As with all human distinctions, there is an element of arbitrariness to it, depending on one’s priorities. Broadly speaking, views of autism vary from conspiratorial theories about autism’s causes (which I do not find helpful) to the more helpful clinical and neurodiverse perspectives. More on that later.
In the history of autism, researchers initially faced the challenge of determining whether there was any hope of helping children who seemed to be in their own world, who either did not talk or did so in an idiosyncratic fashion. It is not my intention here to reiterate anything like the full history (which has been well sampled in books exceeding 500 pages in length): rather, let me just say that autism was gradually distinguished from classic forms of psychosis, went through an unhelpful period in which it was popularly taught that cold, emotionally distant “refrigerator mothers” caused it in their children, and was then increasingly recognized as a difference in neurological development.
(Interestingly, the history is punctuated by two rebellions: first, parents of autistic children rebelled against the experts who had so archly declared their misdeeds as parents were the cause of their children’s problems; later on, autistic people themselves rebelled against what was being said and believed about them without their input. Both revolts brought changes in outlook and practice which have aided in the growth of understanding.)
What is it?
The current clinical consensus definition of autism was arrived at over time, defining it as difficulties with social understanding, communication, and “restricted” interests. In the beginning, parents, physicians, and researchers studied autism in its most overt forms, which involved intellectual and speech impediments, but eventually recognition grew that a significant group of people with average or greater intelligence and speech shared the specifically autistic traits and benefited from help and support. A certain part of this group were like the children that Hans Asperger had described in his work in 40’s era Vienna, which lead to the use of the term “Asperger’s Syndrome” (AS) to describe them as a group. I admit that this account focuses almost exclusively upon this part of the spectrum because I am telling my story.
When the American Psychiatric Association (APA) included the diagnostic label of AS in the 4th edition of the Diagnostic and Statistical Manual (DSM-IV) in 1994, awareness began to trickle down to the public about the existence of “high functioning” autism. The APA later folded AS as well as several other like conditions into the umbrella label of “autism spectrum disorder” (ASD), a move intended to emphasize the lack of agreed-upon dividing lines between subgroups on the spectrum and to standardize insurance coverage for services.
The concept of an autistic “spectrum” points to the fact that autism is not a uniform condition. A common saying among autistics is “If you’ve met one autistic, you’ve met one autistic.” This has led to understandable public confusion as it seems to lump odd geniuses together with people with severe intellectual disabilities, groups most people would consider opposite. This only makes sense if one remembers that intelligence is not essentially related to whether someone is autistic: rather, it is ability for and inclination toward social relations that defines autism.
Is it a disability?
Related to whether autism is a disability or difference, there is some antagonism between the two “camps” in autism land. Some take sharp issue with the clinical perspective, for example, saying it is too quick to label differences as “pathology”, while others retort back that the “neurodiversity” perspective essentially smooths over suffering by calling it “difference”. Speaking for myself, from an admitted lack of personal experience with professionals and interventions, but in a spirit of charity, I would broadly characterize the clinical perspective as non-autistic parents and professionals wanting to help autistic people, while the “neurodiversity” perspective is autistic people speaking out and advocating for themselves. I have learned much and have much yet to learn from the clinical perspective, but I like it best when qualified and corrected by actual autistics speaking for themselves. Autistics are increasingly entering into the research and proposing theories of their own, which is a synthesis that I think it is greatly to everybody’s benefit and bodes well for the future.
I don’t consider my autism a disability, although it causes me difficulty in some areas, nor do I think of it as a misfortune. Actually, I’m quite happy to be autistic, because it contributes to my primary areas of personal strength, joy, and satisfaction. This is not to say that others do not experience their own autism as a hardship or even as severe disability. In point of fact, it wasn’t easy for me in the past, but diagnosis has helped me name and understand what used to be vague and difficult experiences. I will explore this more in parts 2 of this series.