What (I think) you ought to know about Autism
By Kalita Hoffman
Kelita is a mom of two, a lawyer with a Master’s degree from Berkeley who runs a legal consulting and disability tax business. Kelita is passionate about neurodiversity awareness. She is not a medical professional but rather a mother who lives Autism daily and shares her opinion from a personal perspective.
AUTISM SPECTRUM DISORDER (ASD) IS QUITE A fascinating condition to explore. Statistics indicate that 1 in 31 children, and 1 in 45 adults have ASD in America1. This means that we are all encountering Autistic peo ple daily, be it in our workplaces, schools, or social settings. So, what does Autism even mean? The word comes from the Greek word “autos” meaning “self”, and “autism” was first used by Swiss psychia trist Bleuler to mean self-admiration and withdrawal within self. A spectrum then refers to a range between two points, and the loaded word “disorder” simply means “lack of order”2 .
Autistic individuals would be better off viewed as regular people whose brains experience the world in a particular way,
Calling it a disorder is where it gets confusing for me. As a mother of an au tistic child, the reference to Autism as a disorder bothers me. It implies that the rest of us are ordered or typical and similarly that the individual with Autism is disordered or atypical. As a premise, I am strongly against the categorisation of things as “normal” or “abnormal”. In the same vein, I can’t quite conceptualise Autism as an abnormality. For this reason, I think it pertinent to unravel some of the common misconceptions tied to ASD and shed light on some areas that are, in my view, worth redefining.
WHAT IS AUTISM?
Deriving from various definitions and diagnostic criteria combined with personal experience, I define Autism as a unique way in which a person experiences the world, categorised by: deficits in social communication (including social-emotional reciprocity, non-verbal social communication and relationships); and repetitive or restrictive behaviours, activities, or interests (such as insistence of sameness, repetitive movements, sensory sensitivity, and fixated inter ests). There would need to be sufficient impairment to daily life to benefit from support and an individual would have had the symptoms from a young age (whether they manifested fully at a young age or were masked and discov ered later when the demand on the individual increased). In short, an autistic person is one who struggles with social skills and sensory sensitivities (hyper or hypo) and has restrictive behaviours, needing support for these challenges.
Very often, people who are seen as awkward or quirky may be Autistic indi viduals who would be better under stood in that light. More correctly, they would be better off viewed as regular people whose brains experience the world in a particular way. In fact, I real ly do wish we could just see all people as individuals who see the world through their own unique lenses.
THE REDEFINITION: DE BUNKING THE MYTHS AND HIGHLIGHTING THE GLORY
A unique 360° spectrum
A spectrum in its nature indicates that there is a wide range, and autism certainly has one. I prefer to think of it as a 360° spectrum, rather than a linear rainbow. An autistic person could have such a wide variety of traits (each on different parts of this multidimensional spectrum, as opposed to plotting on the graph where the person lies). In fact, many of us so so-called “neurotypicals” could have many of these traits too. Do you ever feel sensitivity to loud noises? Social overwhelm? A firm need for routine? An aversion to a certain food? For this reason, I don’t support the categorisation of “levels” to people with autism. This concept aims to attribute level 1, 2, and 3 to ASD people based on the extent of support a person needs, and while this theoretically makes sense, the categorisation into levels can be misleading and even incorrect. For example, a child with level 1 Autism (ie, a mild case) could require support in ways that a level 3 case (a more severe case) may not. My son, for example, who is often viewed as level 1 (albeit incorrectly), needs extensive support with sensory sensitivities, fixated interests, and rigidity, whereas I know children who are under-responsive to sensory stimuli and require little support; that my son in many ways but perhaps more support than mine in different ways. The reverse is also true. The sup port level in my view can therefore vary depending on the particular trait or even phase the child is in. With the potential needs being so vast and so personal, I be lieve the autism spectrum to be a 360° one. Caution: you may find yourself somewhere on this spectrum.
Autism isn’t a death sentence
Although many mourn their diagnosis, keep it a secret, or refuse to accept it, I believe strongly that with the incredible knowledge, support, and awareness available and the benefits that come with it (which I will get to further down), an Autism diagnosis for your child or a loved one is not insurmountable.
Labelling can be beneficial
For some reason, we are in a place in this woke world where we don’t want to be labelled or defined by anything, be it sexuality, gender, job title, or diagnosis. In the context of neurodiversity, certainly Autism, I disagree. Why wouldn’t you want a label for the way you experience the world when it can be so beneficial?
THE BENEFITS OF LABELLING FOR THE AUTISTIC INDIVIDUAL AND THEIR LOVED ONES:
- Feeling less alone (this should be rea son enough);
- Understanding oneself and others;
- Understanding how and why we and our loved ones do things differently;
- Enabling connection with a communi ty of people just like us (for the autis tic individuals and families) and bene fit from resources that can better quality of living; and
- Helping us know we’re not crazy (or not for this reason at least).
Also, why wouldn’t you want to know more about yourself/your child and get the correct support to better your life. For this reason, I am also in favour of adult diagnoses and have personally seen lives drastically transformed as a result. And no, I don’t buy the “I’ve managed this far” narrative of substandard human exis tence, particularly with the prevalence of anxiety, depression, and addiction.
Don’t use the term Aspergers –ever! Why?
- The term is linked to a Nazi sympathis er who was responsible for a disabled children’s euthanasia programme;
- It’s offensive;
- It’s outdated; and
- Also, it’s not a distinct condition from Autism, nor was it ever. It is Autism-mild or low support if you must categorise.
The world is designed for neurotypicals
Imagine the world wasn’t designed for you? (And then unkind to you when your challenges present themselves.) Let that sink in. Understanding that and considering that as you go about your day will increase your compassion and awareness that our realities aren’t the realities of everyone around us.
Being autistic doesn’t mean you don’t have empathy
Autistic people often struggle with correctly understanding context and interpreting behaviour (ie, theory of mind), which often results in their incorrect identification or interpretation of the emotions of others. It is then highly difficult for them to respond appropriately (or in a way expected by a neurotypical person). This is not the same as lacking empathy. When I tell my son that I am sad, he does empathise and doesn’t like that I am sad. However, he struggles to identify that the emotion I am feeling is sadness. More so when it’s not blatant, like if I were to be mopey but not crying. Nuances and subtleties are espe cially difficult for Autistic people. Responding correctly is therefore highly chal lenging. They do, however, feel empathy (and often even regret when they know they have acted inappropriately). This is also a skill that does improve with time, age, maturity, and practice.
More people are autistic than you think
As a parent in the community, I spot undiagnosed Autism all over the place. As seen by the stats above, Autism is highly prevalent and therefore definitely worth taking the time to understand. And no, I don’t think more people have Autism now, but rather more are being diag nosed (thankfully) due to increased knowledge and awareness. Because of this, more people are also sharing their diagnoses, like celebs across industries such as Elon Musk, Anthony Hopkins, Jerry Seinfeld, and Lionel Messi.
Non-speaking doesn’t mean non thinking or non-understanding
Nor does it mean they don’t understand or communicate; it simply means they don’t speak or aren’t fully verbal. And again, it’s a 360-degree spectrum.
You don’t grow out of Autism
Although the presentation of Autism can change with age, practice, tools, and maturity, an Autistic person will always be Autistic. So don’t be that family who says “he’ll grow out of it”. It’s ignorant and frankly annoying. It’s also another reason to go through the process of accepting the diagnosis.
Autistic people can have super cool talents
This is the cool part. When you see the world uniquely and your brain isn’t bound by the same confines as others, creativity is born. Innovation changes worlds. Take the famous Autistic individuals: Bill Gates, Mark Zuckerberg, or Isaac Newton as examples. Many autistic traits can be highly beneficial and conducive for incredible success, like hyper fixation on a task, in-depth study of detail, deep analysis, systemisa tion, rigid time management, detail orientation, and uninterrupted focus. This is, of course, aside for the IQ piece, which may accompany the rest (keeping in mind that not all autistic people are savants). These qualities can lead to incredible expertise and success in our world and is worth admiration and celebration.
HOW COOL IS THAT?
As a mother of an incredibly bright, highly demanding, but wonderfully kind and lov ing child, I wouldn’t take away his Autism. It is so very beautifully a part of him and our lives and the positives truly are abundant. So, my advice to those grappling with the diagnosis is to persevere in your journey of acceptance and understanding of the spectrum. Embrace it and join me on the side of gratitude and appreciation. •
- 1The Center for Disease Control’s 2022 and the National Center for Biotechnology Information in 2022.
- ‘The Merriam-Webster Dictionary definition.
