If you have swollen ankles and indigestion would you say you’re a little bit pregnant?!
While you might be able to empathise with the individual who’s pregnant if you’ve had some of the symptoms you wouldn’t describe yourself as pregnant, so why is it any different for autism?!
You may be able to relate to some of the traits/experiences of autism but it doesn’t mean that you’re on the spectrum. There isn’t a linear spectrum from neurotypical through to severely autistic. Instead, people with autism have a range of traits from the spectrum and how they experience the range of traits differs from person to person. Thus, a variety of experiences rather than a continuum of experiences.
If you’re interested in understanding more about the different traits check out this blog where I explain the diagnostic criteria.
When discussing colours on the visible light spectrum, we don’t say “this paint is higher on the spectrum” or “I look better in clothes lower on the spectrum”, red is red, blue is blue; we can talk about reddy-orange but it’s either on the visible light spectrum or it’s not. People talk about autism as though it’s a gradient, but it’s not, no-one on the spectrum is more or less autistic than anyone else.
A colour-wheel helps us explain why autism is a ‘spectrum’ condition. Each individual’s traits would be plotted around the wheel and would end up with a spikey diagram. If we compare Ashleigh with Brian, Ashleigh’s difficulties with communication may be ‘milder’ (pale yellow) (because she can talk) than Brian’s (dark yellow) who is minimally verbal. But Brian may have a less rigid need for routine (pale blue) than Ashleigh who has to eat the same breakfast, lunch and dinner at the same time everyday (dark blue). Ashleigh may be highly sensitive to sounds (dark red) but Brian may be able to tolerate noisy environments (pale red). Ashleigh’s executive functioning abilities may mean she can organise her own diary (pale green) however, Brian’s executive functioning difficulties means he struggles to dress himself or make a simple meal (dark green).
Relating to traits
A neurotypical person may be able to relate to the some sensory issues that an autistic person has but their experiences won’t be the same. Some people with autism experience sensory overload; a neurotypical might find bright lights dazzling or dislike, even hate loud environments or they might be a super-taster. However an autistic person will find these things painful and will be completely wiped out after being in these environments. Autistic people have uncontrollable meltdowns and need support when they can’t escape these environments.
Another example might be in social situations where a neurotypical person may have a strong tendency for introversion, shyness or even have social anxiety. They may be able to relate to an autistic person’s social difficulties. But autism is about a difficulty across many social situations; it isn’t just a preference for fewer friends (for example) or a liking or quiet environments— there are blocks to being able to manage social interactions. Someone with autism could learn to manage specific environments (e.g. a professional meeting) but they wouldn’t be able to generalise that learning across to other situations (for example).
If you like watching videos, I recommend this video for an explanation about the differences between someone who can relate to the spectrum and someone who’s on the spectrum!
Experiencing one or two autistic trait
Autistic people will tick most or all of the boxes with regards to the diagnostic criteria. However, people who tick one or two of the boxes might find one of these disorders might be a better fit:
- Attention deficit hyperactivity disorder
- Obsessive compulsive disorder
- Borderline personality disorder/Emotional unstable personality disorder
- Oppositional defiance disorder
But does the label matter? Not to everyone. However, it’s important we don’t give ourselves the wrong labels. Saying “aren’t we all on the autistic spectrum?” spreads misunderstanding about autism.
Considering us all on the spectrum puts really neurotypical at one end and really autistic at the other end but this is unhelpful. Society tends to place a high importance on verbal communication and therefore places those with little or no verbal communication at the “severe” end. This confuses autism and learning disabilities. People who you might consider at the “mild” end of autism, tend to be people who’re able to mask their autism and therefore you’re really not seeing how their autism impacts them at all.
Don’t get me wrong, there are some traits of autism that mean people need more support, which is why there are different support groups, 3 in fact:
- Requiring support
- Requiring substantial support
- Requiring very substantial support
You may notice that there’s no “does not require support” and because autism is a lifelong neurodevelopmental condition, even if someone is really good at masking their difficulties, you have no idea what goes on behind closed doors!
Before I was aware of my autism, every time I struggled with change I would think “but no one likes change”—I just thought I was on the extreme end of ‘normal struggles with change’… But autistic people have a need for routine that’s not about being difficult or stubborn.
It’s not about preferences
Consider the scenario where someone likes their bed made a certain way. A neurotypical person might have strong preferences. If someone else makes their bed a different way, they may feel frustrated that their bed isn’t made the way the like it and may re-make it their preferred way. A person with autism would see someone make their bed a different way and would consider the bed unmade. The autistic mind isn’t about likes and dislikes or preferences, it’s literal, they’re not being awkward, they just see the world in a specific way and if it doesn’t match up then it doesn’t make sense; all they’re trying to do is try to make sense of the world.
For me, change is like someone using a cheese-grater on my brain. Everything gets all jumbled, my world turns into disarray. It’s not just that I don’t like it but things don’t make sense. Autistic people actually have to make new neural pathways. I’ve spent years thinking “no one likes change, so if everyone else is coping…” I felt I had to punish myself for not coping like everyone else.
Now I’m beginning to understand myself, I’m allowing myself the time and space my brain needs to build new neural pathways. This is why it’s important to embrace difference rather than diminish it with sweeping statements like “no one likes change”. It’s not that I don’t like change, it’s that my brain doesn’t understand it. It’s not about my level of intelligence, I’m just different and that’s ok.
Accepting and embracing differences
Some things people say to autistic people such as “you don’t look autistic” or “you must have a mild form” come from a place of wanting to reassure the person that they fit in, trying to make them feel better(?) as though being “normal” is better than being different…
This minimises people’s difficulties and shows a lack of empathy.
If you’ve spent lifetime trying to fit in (like most of us have) and it simply hasn’t been working, a diagnosis of autism actually frees us from having to fit into “normal” society, finally, we don’t have to mask and pretend everything’s ok! So, accepting our individuality and our difference is a beautiful relief!
How would it feel to say “you’re beautifully unique” and truly value that difference?!
Instead you could say “tell me how it is for you”. You might be able to relate but only once you’ve fully understood the other person’s experience (by really listening to what they say) will you be able to empathise. Sharing experiences is what makes us all human—neither person needs to feel dismissed or diminished.
If you feel you do experience autism traits, maybe you do meet the criteria for a diagnosis, it’s up to you if you pursue a formal diagnosis or use the label but it’s not helpful to use phrases like “aren’t we all on the spectrum” to talk about the whole population.
Saying this spreads misunderstanding, which in turn leads to stigma and discrimination.
When you say such phrases, while I understand it may be coming from a good place, of trying to relate or reassuring the individual, it can have the opposite effect of diminishing the experience of the autistic individual. You might be trying to say “I understand” but I hope I’ve explained in this blog that we’re different, and while we may share similar experiences we’re not all on the spectrum because our brains are wired differently. Different doesn’t need to be scary, after all:
Strength lies in differences, not in similarities.Stephen Covey (author, educator and businessman)