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Truth vs perception and judgement

A painting of a figure screaming with saliva coming out of their mouth

By Lani Jacobs

This article is part of My Plan Manager’s guest blogger series.

We often judge on first appearance but what we think we see might not be the truth or without understanding the situation may not be what we think we see.

I often hear very negative or judgemental comments from ignorant people about the obvious and not so obvious differences and behaviours of diagnosed and undiagnosed people with differences or disabilities. I hope by explaining common misconceptions I’m able to inform and educate neurotypical people, increase awareness, and cultivate acceptance. Click below to expand and read more.

What do you think and see?

SEE: Spit/drool dripping from somebody’s mouth. An open mouth.

What are you really seeing or what may be causing this?

The drooling could be caused by Physiological Difficulty with swallowing and mouth muscle control or just poor muscle tone. The parent or carer has probably wiped the drool over and over again to prevent the person with the disability from developing a rash, but at some point they would need their hands to steer a wheelchair or hold a spoon or take out a wallet or make a phone-call. They may also have run out of tissues or wipes or facecloths or just simply be very tired.

What do you think and see?

SEE: Sniffing, runny nose or coughing.  

THINK: Can’t they just blow their nose? People with colds should stay home, especially during Covid!

What are you really seeing or what may be causing this?

Possible compromised Immune system or allergies. Some people with disabilities get sick very easily and then take a long time to recover. They may also struggle to take medicine, because of the taste, texture, or difficulty with swallowing. The sniffing could also be a tic. Many people with disabilities have uncontrollable tics and sniffing happens to be a very common one.

What do you think and see?

SEE: Fussy Eating.

THINK: Some people are just ungrateful, and parents need to be stricter, then their kids would eat anything they were given.

What are you really seeing or what may be causing this?

To some people food can be very scary. They perceive colours or smells or textures in foods as dangerous or can have a gag reflex in response to different foods.

Experiencing this response can trigger Food Related Anxiety and cause them to fear a repeat of the response and therefore the food. This can then cause them to fear any unfamiliar food.

Parents have to choose their battles. Children with disabilities will often not respond to conventional methods of discipline or behaviour modification. Bribing probably will not work. Letting them get hungry enough probably will not work. These children (and adults) would often literally rather starve to death than eat a new food that is not on their ‘approved’ list.

What do you think and see?

SEE: Child over toddler age sitting in a stroller.

THINK: Bad parenting. Child too lazy to walk.  

What are you really seeing or what may be causing this?

Child with a disability that could affect them physically or behaviourally and parent or carer opting for a stroller to keep the child safe, give them peace of mind and enable them both to enjoy a peaceful outing.

What do you think and see?

SEE: Eyes looking in different directions.

THINK: Why don’t they just get glasses for this person?

What are you really seeing or what may be causing this?

Poor muscle control, difficulty focussing, or eye convergence could cause this. The person may also have a vision impairment or possibly brain damage. Additionally, fitting somebody who has a disability with a pair of glasses and then attempting to keep the glasses on them can prove incredibly difficult.

What do you think and see?

SEE: Grunting and squealing noises.

THINK: People who make that much noise should just not go to public places.

What are you really seeing or what may be causing this?

People with disabilities experience excitement. They may not be able to talk, but they make attempts at communication. They experience and express pain, or discomfort. They make voluntary and involuntary sounds for many different reasons. They are people. They have the same right as everybody else to be out and about. They enjoy going places and their parents/carers desperately need those outings too. They are human. They have the same need for Social Interaction as others.

What do you think you see?

SEE: Hand flapping.

THINK: Why is this person making silly, distracting, inappropriate gestures.

What are you really seeing or what may be causing this?

Excitement or Stimming behaviour, which can be very soothing and even help with concentration and self-regulation. Certain medication can also cause or exacerbate these movements. Preventing this flapping can cause severe emotional distress.

If it does no harm to anybody, then why is it a problem?

What do you think you see?

SEE: Hair coarsely and roughly chopped or clipped.

THINK: Why not just go to a proper hairdresser?

What are you really seeing or what may be causing this?

Many people with disabilities have sensory sensitivities and an aversion to being touched. Many people with disabilities also have a fear of sharp objects like scissors and the noise and sensation of clippers. Sometimes they are unable to distinguish between real and perceived danger.

Going to a hairdresser for a cut may be as achievable as going to the Moon. Parents and carers may just do the best they can themselves while blocking flailing arms and hands and bloodcurdling screams.

What do you think you see?

SEE: Clothes with holes on the sleeve and neckline.

THINK: Surely people can afford clothing that is whole. There are so many opp-shops. This person does not look cared for.

What are you really seeing or what may be causing this?

Oral seeking behaviour causes many people with disabilities to chew or suck on the hems, collars, or sleeves of their clothes. This can be a sign of Anxiety or just a need for Oral Sensory input created by the brain. It can also just be soothing to the person who chews their clothing. There are ‘chew toys’ available, but a lot of oral sensory seekers do not like them or just prefer the texture or sensation of clothing. Buying a new shirt or jumper every second day can become very expensive.

What do you think you see?

SEE: Lack of eye contact.

THINK: Rudeness or disrespect. Shiftiness.

What are you really seeing or what may be causing this?

Some people find eye contact extremely uncomfortable or even painful.

Forcing eye contact can be very distracting and may make it impossible for them to focus on anything else. It could mean that they do not hear what is being said to them and will not be able to respond appropriately, therefore they may look like they are not listening.

What do you think you see?

SEE: Sunglasses indoors?

THINK: Hiding abuse or red eyes from crying? Think they are fashionable?

What are you really seeing or what may be causing this?

This could be a sign of light sensitivity, which is very common for people with a variety of disabilities.

Sunlight can be an issue, but so can fluorescent or flickering lights as can often be found in shopping centres.

This light sensitivity can be very painful and exhausting and make it hard for the person to see.

What do you think you see?

SEE: Loose, too large clothing.

THINK: People have no sense of fashion! People are just too lazy to dress appropriately. Parents/Carers should take better care.

What are you really seeing or what may be causing this?

People with Sensory sensitivities often buy clothes according to how they feel rather than what they look like. Some people prefer tight clothes that provide deep pressure and others prefer loose-fitting, soft clothes.

Many people with Sensory Sensitivities struggle with seams and tags and will often wear their socks and underwear inside out and may even do this with their outer clothes too. This is not the normal kind of annoyance or irritation NT people experience from tags, etc. in clothes. The irritation/pain experienced can be so intense that the person risks having a complete meltdown or shutdown as a result and would rather risk comments about inside-out clothing than deal with the sensation of the seams or tags.

What do you think you see?

SEE: No greeting

THINK: Rude! People these days have no manners.

What are you really seeing or what may be causing this?

Many people with Disabilities have great difficulty in Social Settings. They may not know that they should say something in return if somebody greets them or they may not know exactly what they should say.

They may reply with a simple ‘Hi’ instead of ‘Hello, how are you?”. They may say ‘Hello’, but not smile or make eye contact.

People with disabilities may seem very unfriendly and abrupt but may in fact just be tired. Many people with disabilities do not instinctively get the nuances of Social Reciprocation. They act how they feel. They say what they think. They answer what they are asked.

They may not understand tact or subtlety and may see it as dishonesty. Some have difficulty understanding that others may not think as they do or ‘know’ what they are feeling.

What do you think you see?

SEE: Hiding under tables/furniture.

THINK: Why are they doing that? If that was my child, I would teach them how to behave appropriately!

What are you really seeing or what may be causing this?

Sensory or Social Avoidance. Sometimes people with disabilities just feel all ‘peopled out’ and need to be alone to recharge and reset. They may also be scared or overwhelmed and be acting out of ‘fight, flight and freeze’ instinct.

What do you think you see?

SEE: Defiance and refusing instruction.

THINK: That person or child is a troublemaker. They just need more discipline or an encounter with the law.

What are you really seeing or what may be causing this?

This can often be a symptom of something else. Many disabilities cause Anxiety and Anxiety can cause Fight/Flight/Freeze responses, which could translate to ‘bite before you get bitten’ reactions and could come across as defiance. Sometimes people and especially children with disabilities are very aware of the things they can and cannot do and will refuse instruction if they know that compliance will put them in a position where their struggles will be highlighted and they will feel embarrassed.

What do you think you see?

SEE: Nails bitten to the quick.

THINK: That is so gross! Why don’t they use something to stop the biting?

What are you really seeing or what may be causing this?

Habit, Anxiety, Sensory Seeking or Sensory annoyance from long nails. Also, could be fear of sharp objects such as nail clippers.

What do you think you see?

SEE: Avoiding dancing/crowds.

THINK: Why don’t they just live a little?

What are you really seeing or what may be causing this?

Social Anxiety and Self-Consciousness often go hand in hand with disabilities. The perception of being made the focus of anybody’s attention or ‘people looking at them’ is a very big trigger for many people with disabilities.

What do you think you see?

SEE: Agitation, irritation, aggression and complaining when hot.

THINK: Everybody is hot! Stop whingeing and toughen up or go live in the North Pole!

What are you really seeing or what may be causing this?

Many people with Sensory Sensitivities or compromised Immune Systems cannot successfully regulate their body temperature. They rely on external temperature regulation. Some cannot recognise or verbalise when they are getting uncomfortable. This means that they get agitated, irritable, or even aggressive when they overheat and this can lead to meltdowns, shutdowns or even physical reactions such as heatstroke, dehydration or rashes.

What do you think you see?

SEE: Refusal to do as asked.

THINK: Difficult or rebellious person. Deliberately making things hard for others.

What are you really seeing or what may be causing this?

Fear of failure or losing control or being made to look a fool can sometimes cause this type of behaviour. There is also a subset of people on the Autism Spectrum who have Pathological Demand Avoidance. This is something best discussed in a separate post and with somebody who has extensive knowledge of PDA such as Kristy Forbes.

What do you think you see?

SEE: Irritation and exhaustion in social settings and shopping malls. Children screaming and lashing out or running off.

THINK: Children did not behave like this in our time. My kids would never do that. People really need to toughen up.

What are you really seeing or what may be causing this?

Sensory Nightmare. Lights, music, constant movement, constant change, crowds of people, lots of strangers, many decisions, constant Social Interaction. Too much! There is a difference between a tantrum and a meltdown. A child who has a tantrum is trying to achieve something such as getting their parents to buy them a toy. A child who has a meltdown is experiencing total loss of emotional control. They cannot stop, even if they want to. A child or adult having a meltdown reaches a point of ‘no return’, where they feel so overwhelmed that they can no longer be ‘reached’  by those around them and no amount of talking or bribing or pleading will calm them down. Most often the only way is to remove them from the environment that caused the distress and let the meltdown safely play out.


Lani Jacobs is a late diagnosis adult with ASD and ADHD. She is a trained High School Teacher but works as a Teacher’s Aide (Learning Support Officer), where she supports kids with all sorts of disabilities and challenges. In her free time she also works as an Artist. She has a passion for people with invisible and visible disabilities and thinks a lot of the social difficulties faced by the Disabled Community are the result of the ignorance and lack of education of the broader community.

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My Plan Manager: NDIS Plan Management