How to be an Ally to the Autistic Community  

Article 1: Advocating as an Ally
by Michael Cnudde  

Even in the smallest matters, autistic people must be prepared to advocate for themselves; however, many find it difficult to do so.  

The practice of advocating for oneself may not come easily for an autistic person.  When I was younger, I had great difficulty speaking up for myself as I thought my opinion was not as valid as others. Over time, I learned my opinion was valid and it was necessary to advocate for myself. I also realized that I wasn’t alone and that I had people in my corner.  

By “having the back” of an autistic person and showing a supportive presence, you can go a long way in helping them just by being there and acting as a witness. Given the time and the room to speak, most autistic people will know exactly what to say — and once they are able to do this, they can also begin to live more authentically as autistic people.  

 

Understand Autistic People  

Read up on autism. You might also wish to familiarize yourself with autistic people and their experiences.  

 

Ask Questions and Listen Actively  

Actively listen, without judgment to autistic people. Many autistic people have social media profiles, and you can get to know them better by following them in the media or check out AIDE Canada’s collection of titles authored by autistics.  

 

Create Accessible Environment  

If you are an employer or teacher, learn how you can make your environment as accessible as possible to autistic staff, clients, and students. Remember that since autism is a spectrum, no two autistics are alike.  

 

Turn Advocacy into Action  

If you see an opportunity to advocate on behalf an autistic person, take it. When you’re making your point, don’t make it personal; challenge the problem, not the person. Take the opportunity to explain the impact their statement may have on an autistic person.  

 

Use Appropriate Language  

The language around autism has changed. Many people with autism choose to call themselves “autistic” or “autists.” “Person with autism” is seldom used. Autism is almost never referred to among autistics as Autism Spectrum Disorder or (ASD), as many autistic people dislike the term “disorder” and the implication that there is something wrong with them. “Autism” is generally used in its place.  

Autistics sometimes refer to themselves with a function-based descriptor, such as “high-functioning autism,” but this is being challenged in favour of a supportive description based on the level of support required indicated in their diagnosis (high supportive, medium, or low).  

You may find some autistics prefer the term “Aspie”, which originates from the former diagnosis of Aspergers' Syndrome. Formerly, this referred to the diagnosis of Aspergers' Syndrome, named after Hans Asperger, the Austrian psychologist who was an early autism pioneer. In recent years, since new information about the historical legacy of Hans Asperger's has come to light, the term has acquired a moral odour. In the most recent (2013) edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), the term has ceased to become a separate diagnosis apart from autism, and now is considered to be a form of high-functioning autism. Autistics calling themselves “Aspies” continue to do so as a way of reclaiming the term. 

Article 2: Understanding the autistic experience of sensory processing and related sensory needs
by Moira Peña, Occupational Therapist

Sensory processing is the way in which we interact with and make sense of the world around us. Up to 96% of autistic people experience significant sensory processing differences to such an extent that they significantly impair the person’s ability to function and participate in daily activities (Ahn et al., 2004; Ben-Sasson et al., 2009, James et al., 2011; Galiana-Simal et al., 2020; Jussila et al., 2020). Some autistic people are hyper-reactive to sensory input (covering ears due to high sensitivity to sound for example) and others are hypo-reactive to sensations which means that the person may not be reacting to sensory cues as neurotypical people would expect them to. Autistic people can also be hyper-reactive to one type of sensory input (like sounds) while also being hypo-reactive to others (noticing body signals of hunger or need to use the bathroom for example).

Challenges with sensory processing can be a significant stressor for autistic people as they can lead to experiencing physical pain from sensory overload and sensory unpredictability. This phenomenon is often under-recognized by society which means that the person experiencing sensory overload is often left feeling like their lived experience is not validated by others. 

 

How can I validate someone’s lived experience of sensory processing? 

• Accept and Honour Sensory Experiences: Accept and honour the unique way each person experiences the sensory world. It may be different but not a ‘lesser’ way of being. In fact, sensory processing differences may also be a source of unique gifts and quality of life for an autistic individual. 
• Be Aware of Triggers: Be aware that sensory processing differences often come hand in hand with anxiety. Living in a world that is often full of unpredictable sensory triggers sets a neurodivergent person up to become highly anxious. It is therefore a good idea to include anxiety management strategies into a person’s repertoire of helpful daily activities, often referred to as a ‘sensory diet’ or a sensory support plan by occupational therapists. 
• Be Curious and Ask Questions: Try to be accepting and understanding of sensory needs. Be curious and ask questions as to what may be happening and try to not make assumptions. Acceptance also means that we recognize that the use of sensory tools and access to accommodations may be required for that person to feel safe and function to their optimal level. This approach is personalized and unique to each autistic individual.   
   

 

How can I best support autistic people in relation to sensory processing?  

Accommodating Sensory Needs 

• Be flexible and accommodate sensory needs and choices. This may mean choosing sensory-friendly restaurants or purchasing softer clothing or simply respecting and validating a person’s sensory preference for no tactile contact for example, ‘no hugs’ without preparation and explicit consent. 

 

Supporting Stimming:  

• ‘Stimming’ is short for self-stimulation. A ‘stim’ may look different from person to person but it often has a repetitive and rhythmic quality to it. Some examples include: flapping hands, rocking, spinning, or jumping up and down.  It is now recognized that stimming is a behaviour that a person may engage in to help regulate their sensory systems. Suppressing stims can make people feel anxious as it can remove a means of self-regulating. Unless a stimming behaviour is causing harm or injury to self or others, please do not attempt to stop it. You may want to see if there is a space at work, home, or any other context that the person may be in where they may be able to ‘stim’ without worrying about how others may perceive this behaviour.  

 

Supporting “Sensory Meltdowns”: 

• Be a Sensory Detective: If you think someone may be experiencing a ‘sensory meltdown’, try to become a ‘sensory detective’ by looking around and identifying potential sensory triggers in the environment that may be causing sensory overwhelm. For example:  Are the lights too bright?  Sounds too loud or are there too many sounds or vibrations at once? Too much happening visually? Try to step into that person’s shoes and see what you can minimize or enhance so that the environment becomes a more sensory-friendly space for the person.  
• Remain Calm: During a sensory meltdown, remain calm and keep your words to a minimum. When a person is in a ‘fight, fight or flight’ state they can’t process information as easily and they may not be able to use their words to express their needs. They may need to use a different form of communication such as an AAC (augmentative and assistive communication) device or they may simply need more time to process information before being able to communicate again. 
• Be Proactive: Be proactive and co-create a plan with the autistic person and/or their family as to how to best support the person during and after a sensory meltdown. This can mean having immediate access to a ‘sensory kit’ or to specific sensory tools that have been successful in mitigating sensory overwhelm in the past such as access to noise-cancelling headphones or ear defenders or a soothing fidget tool.  

Sensory regulating techniques look different for every person and need to be personalized to each person’s sensory needs. When you are considering how to be an ally for someone experiencing sensory differences, try to be aware of the person’s sensory challenges and sensory preferences that may be positive and soothing to the person. If the person is able to communicate, you may ask what helps them to remain calm and reduce stress and what strategies they have successfully used in the past to regulate themselves.

 

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Article 3: Understanding the autistic experience of using AAC (Augmentative and Alternative Communication)
Technologies to Communicate 
by Moira Peña, Occupational Therapist 

Augmentative and Alternative Communication (AAC) refers to all other forms of communication besides speaking.  A person may also be able to produce speech but may use AAC at the same time to be able to enhance their communication.

Here are some examples of AAC: 

Low-tech versions of AAC	High-tech versions of AAC
Pen and paper Body language and gestures Facial expressions and directing one’s gaze towards a desired object. Picture Exchange Communication System (PECS)	Tablet or computer with communication apps Voice-generating software and apps

 
How can I validate someone’s lived experience of using AAC to communicate? 

• Presume competence: People assume that if you are non-speaking, you are not communicating. Understand that a person can have a lot to contribute but may simply not be able to speak. 
• Dismantle stigma around the use of AAC: Just because someone points or types to communicate, does not mean that the person is deaf or that they do not have the cognitive capacity to understand what is being said.  
• Be aware of your assumptions: Every person deserves to be seen as a whole and complex human being who is worthy of the same rights as everyone else. Be aware of your assumptions about non-speakers and take explicit steps to address these 
• See all forms of communication as equally valid: AAC is useful for speaking and non-speaking people! AAC helps the autistic individual and their communication partner. We all vary in our communication style. Although it may feel uncomfortable at first, try to communicate through the person’s preferred method.  
• Use of language: In general, the term ‘non-speaking’ is preferred over ‘non-verbal’. Neurotypical communicators should not be prescribing a ‘correct’ way to interact, we instead explore and provide tools for autistic people to use, if and when they want to. 

 

How can I best support autistic people in relation to using AAC?  

• Be patient: Give additional time for the person to respond to your question by typing, gesturing, pointing or tapping an image. Due to motor differences that are very common in autism, the person may not be as quick to type their word out as others. Do not move on in the conversation without giving the person enough time to process the information or finish sentences for them. Many autistic people can understand verbal language but just need extra time.
• Be creative and support multimodal communication: A person who uses AAC may also prefer other forms of communication based on the context that they are in and on their abilities on that day.  
• Be open and inclusive: There are different forms of communication a person may use such as signs, eye gaze, guiding a loved one’s hands to what they may need or any other type of body language.
• Be flexible: Some days are going to be harder than others- remember that this is often more distressing for the autistic individual than it is for you. Sometimes the person may not be interested in practicing using AAC (it’s hard work!) and would rather just spend time with you instead. Recognize how complex it is for someone to take in auditory information, process what the response may be, and then find ways to effectively use a device to communicate this answer.  

When you are considering how to be an ally for someone who uses AAC technology to communicate, remember to not limit the verbal input that you're giving the person you are supporting. Respect the person as an equal and use the language you would regularly use in your day-to-day instead. Keep in mind that communication changes across the lifespan- it continues to develop and therefore it is important to be curious and find out what you can do to better support the person in their journey. 

 

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Article 4: The Language of Acceptance – Allying Through Changing Words, Changing Attitudes 

By Maddy Dever

*The word ‘Autistic’ will be capitalized throughout this article to respect the preferences of the author.  
 

I realized several years ago that to change the quality of life for all Autistics, we need allies. Allies who have a changed attitude and understanding of autism. I have come to see that the best way to change attitudes is by changing our own vocabulary regarding autism, Autistics, and disabilities in general. 

 

Medical Model =  Deficit. Disorder. Dysfunction. Intervention. Fix. Broken. Cure. 

These are the words that exemplify so much of what is wrong with the medical model of disability. The medical model of disability defines disability as an illness or disorder that is causing us not to function in a “typical” way. To address our disability, we need to be treated, intervention is necessary, and cures must be sought in hopes that the patient will have become “normal” or “fixed”. This leads to assumptions and hurtful and damaging language.  

Disability rights activists have for decades objected loudly that this concept of disability did not match their own experiences.  They were greatly concerned about how negative this terminology made others feel about them, and it also affected how they perceived themselves. 

They felt that it was the world around them, and the barriers (both visible and invisible) that were disabling them. This brought about the concept of a social model of disability.  

 

Social Model = Challenge, Condition, Supports, Accommodations, Co-operation. 

In this social model, instead of needing to fix or heal the condition a person has, we instead find accommodations to allow a person to live a full life. Instead of focusing on what’s wrong with the person, we address the barriers both physical and systemic and work to remove them. This concept of removing systemic barriers is a key concept that ableism shares with all the other “isms”.   

 

What is ableism? Ableism is the discrimination of and social prejudice against people with disabilities based on the belief that typical abilities and able bodies are superior. 

We need to root out ableism and tear down these barriers. 

 

How do we apply it to autism and disability language? 

We need to change the words and phrases that come from the very deficit focused medical model of disability and words matter. Words can change thoughts. Thoughts change hearts. Hearts change actions. And actions can change the world. 

 

Instead of…	Try…
Red Flags	Possible/Early Signs of Autism
Symptom	Characteristics or Traits
Deficit	Challenge
Disorder	Condition
Interventions	Supports
Impairment	Barrier
Severe	Extensive
Co-morbid	Co-occurring or Co-existing
Challenging Behaviours	Interfering Behaviours
Compliance	Co-operation/Co-operative
Suffering from/Affected by	Challenged/Impacted by <specific need>
Non-verbal	Non-speaking
Selective mutism	Situational mutism
Restricted Interests	Intense or Exclusionary Interests
Attention-seeking	Support-seeking/Connection-seeking
“Special” needs	Needs or Accommodations Leave out the word “special”
Some other that terms can be problematic: Dysfunction, Fix, Broken, Cure, Lame, blinded by, Deficiency, Low-functioning/ high-functioning

 

Autism isn’t something to be feared of, so let’s stop talking to parents about the “red flags” or risks of autism, and instead talk about possible or early signs of autism. Please, please, please don’t say we are “suffering from” or “affected by” autism. 

 

Identity vs. Person-First Language 

One of the areas that we get caught up in our language is in how we talk when referring to us. Over the last 20 years there has been a concerted effort in the medical and parent communities to use person-first language when discussing us: “Person with disability”. “Person with autism”. “Person in a wheelchair”. However, most Autistics, and many other members of other disability communities prefer identity-first language. I am Autistic.  

When I speak, I introduce myself at the beginning of each talk like this: 

“I am Canadian. I am a parent. I am a child. I am right-handed. I am white. I am gifted. I am a Sens fan. (Again, sorry Leaf and Habs fans).  

If I used Person-first language to describe these parts of me, it sounds like this:  

“I have Canadianness. I have offspring. I have parents. I have right-handedness. I have whiteness. I have giftedness. I have a fan interest in the Sens.” 

None of this sounds right, it doesn't feel comfortable describing myself this way. Even my grammar checker had a hard time with this sentence! 

However, it's not universal, and each community and each person can decide how they identify. When it comes to talking about a person, use their name, consider using identity first language and always ask. If you are uncomfortable saying “is Autistic”, then use the diagnosis neutrally, by saying “on the autism spectrum” or “is diagnosed with autism”.  

 

Functioning 

hen it comes to autism, we have to deal with the stigma of being Autistic and we also must deal with the concept of “levels of functioning” - “high functioning” and “low functioning”.  

“Functioning” describes our perceived capabilities at one moment in time. Strengths that we may have in one area may mask significant gaps or challenges in other areas. Change can quickly make someone appear “low functioning” who has been previously deemed “High Functioning”. 

The problem is how an Autistic can “function” one day in one area may be very different the next day, the next month, the next year. 

We need to change how we see the Autism spectrum. It is not a linear spectrum where we are either “more Autistic” or “less Autistic”. It is more like the spectrum of a colour wheel, where we see all the domains like language, motor skills, executive functioning and others along the sides, and we have relative strengths or challenges in each area, and that can change from day to day, month to month, year to year, and change when there are different stresses or events in our life.  

Support the needs, not the label! We need allies who will advocate strongly for supporting our needs, and not our labels. This concept can change the quality of life of Autistics who can get the support that they need, where they need it. 

 

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