"We are all somewhere on the autism spectrum/a little bit autistic" and other lies of non-autistics

On why late diagnosed Autistics are offended when Neurotypicals deny us our newfound, hard-won cultural identity

I was recently reminded of how unhelpful the concept of “a spectrum” is when applied to autism. One of my closest and most well intentioned friends - an ally and support worker for autistic children - told me this about herself:

“I’m not autistic, but we are all probably on the spectrum, so most probably I am”.

This is a common phrase that autistics hear when speaking to friends and family of our own neurodivergent identity. Now that over a week has passed, I have thought of the perfect retort: a sarcastic “Really? But you don’t look autistic?!”

The confusion with the spectrum surely lies in misrepresentation, ignorance, and semantics. Frustrating for literal thinking autistics.

The word “Spectrum” can convey two very different meanings:

SPECTRUM /ˈspɛktrəm/ (noun)

1) A band of colours and/or a collective of differently wired humans, as seen in a rainbow, that exhibits range, depth, transparency and vibrancy.

2) Used to classify something/someone in terms of its position/their social capacity (or perceived lack thereof) on a scale between two extreme points. 

Autistics tend to use the first definition, whereas non-autistics tend to use the second, with reference to the so called Autism Spectrum. As a group we can see the variety of collective differences that make us individually identify as autistic, with the depth and vibrancy that fluctuates with our daily presentation. Fluctuating capacity is very much a hallmark of autism - never more so than in autistic perimenopause.

Much like a rainbow can be vivid in one glance, yet barely there the next, our autistic traits might seem more overt or covert depending on our immediate surroundings, the accommodations in place, and to what extent we are masking/unmasking in the moment.

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Non-autistics do not see autism the same way that we do. For the sole benefit of the non-autistic, autism is scaled, measured and categorised into levels of high, medium or low level functioning. Ironically, this thinking style towards autism diagnosis by non-autistics is rigid and inflexible. To them, autism is something to define, to rate, to control, to restrict, to excuse, to diminish, to prohibit and to deny. Something to be ashamed of, and never something to celebrate.

Parents may “grieve” for the non-autistic child they had anticipated having pre-autism diagnosis, and they may advise others to do the same. These parents are given a lot of media coverage and social media platforms to put this message across, with their “autism spectrum” rating scale definition still being the dominant one.

Confusingly though, these very same people may push their own agenda by declaring that everyone is autistic, envisioning their scale to be autistic at one end to non-autistic at the other, and thus misusing the concept of a spectrum entirely.

Now the lost generation of autistics are pushing back against this pitying and gaslighting rhetoric.

Photo by Joyce Hankins on Unsplash

The confusion surrounding who can and cannot identify as autistic these days is worsened by many so-called professionals tasked with diagnosing autism, who often misdiagnose autistics during the formal assessment process. If they don’t understand autism, is there any hope? I know first hand that it is soul-destroying - and extremely common - for late diagnosed autistic parents to be told that their autistic children are not autistic following a formal assessment (clinically using ADOS-2, which does not recognise nuanced or subtle presentations of autism). I’ve even heard of children having their autism diagnosis redacted, therefore undiagnosing autism!

Those same professionals ironically then advise parents to attend a parenting course, dropping parents into a spiral of shame and gaslighting. Ironic given that those very professionals are the ones in need of further training and continual professional development. They would learn a lot if they were willing and able to listen to the lived experiences of actual autistics.

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How I feel when Neurotypicals deny me my newfound, hard-won Autistic cultural identity:

• Gaslit, because they are diminishing my chronic struggles, challenges and differences. These are often the same people who may have told me over the years that I am weird, make them feel uneasy to be around, that I ask too many questions/am too quiet, I am too insensitive/over sensitive. I can’t win. Now that I come to think of it, I don’t recall making such judgements of others, although perhaps I am misremembering..? (Wait, am I now gaslighting myself?)

• Angry, because it implies that I am not entitled to my culture; that there is no difference, or that they are also able to identify as autistic, even when they don’t understand autism.

• Unheard, because I have spent a lifetime feeling like I don’t belong anywhere (including homes I have established for and by myself), that I can’t fit in, that I don’t identify as human, white, feminine, or any other identities that have been presumed my birthright.

• Ignored, because my plight of achieving (and it is indeed an achievement, worthy of celebration) mine and my children’s diagnoses of autism and ADHD have been protracted battles with different institutions and negotiations within power structures where I have had to establish my position as a collaborative partner in the assessment team. I have barely survived these processes, especially the deeper I descended into perimenopause. When I was at my lowest capacity, I was having to push and stretch myself harder than ever.

• Proud, because I have overcome so much to advocate and self-advocate, amid this rapid and steep learning curve. I feel like I deserve an honorary doctorate, to be honest! There is nobody with the capacity to learn and research any topic, as much a late diagnosed autistic mother collating supporting evidence to obtain her children’s diagnoses.

• Betrayed and belittled, because I have put in all this effort but it is still under recognised because I am “just a Mum”. What could a late diagnosed autistic woman with an Honours degree in Psychology, a Postgraduate Certificate in Education, and a Master of Arts in Education possibly know about children, autism and developmental psychology? Gah!

• Exhausted, because, as a self-protective mechanism, I utilise my intellect to compensate for and mask my struggles, manage my anxiety, hide my tics, and withhold what I really want to say, which leaves nothing left in the tank for small talk or engaging in hobbies.

• Undervalued and offended, because I have undergone all this work alongside my usual everyday duties (parenting, managing a household, trying to stop the interior of my car from resembling a skip bin, attending regular medical appointments, and so on), only to still be denied recognition that my lived experience and world view are exponentially and sensorially different as an autistic person.

• Scared, because not being seen as autistic causes a misplaced expectation on me to behave just like everyone else, and the thought of that is actually quite repulsive to me.

• Enraged, because I am in autistic perimenopause, and I really cannot take much more!