Autism is a brain difference that is basic and fundamental to who we are.

It starts with the basic, foundational idea that there is nothing wrong with us. We are fine.

We are complete, complex, human beings leading rich and meaningful existences and deserving dignity, respect, human rights, and the primary voice in the conversation about us. We need to change the the frame through which we view Autism.

We want to dare that overwhelming world to lose the accepted stereotypes about Autism.

And the stigmas. And the prejudices.

We need to change the lens so that we see the strength in Autism.

And the value. And the beauty.

Autism is a developmental disability that affects how we experience the world around us. Autistic people are an important part of the world. Autism is a normal part of life, and makes us who we are. Autism has always existed. Autistic people are born autistic and we will be autistic our whole lives. Autism can be diagnosed by a doctor, but you can be autistic even if you don’t have a formal diagnosis. Because of myths about autism, it can be harder for autistic adults, autistic girls, and autistic people of color to get a diagnosis. But anyone can be autistic, regardless of race, gender, or age. 

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Autistic people are in every community, and we always have been. Autistic people are people of color. Autistic people are immigrants. Autistic people are a part of every religion, every income level, and every age group. The communities we are a part of and the ways we are treated shape what autism is like for us. 

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There is no one way to be autistic. Some autistic people can speak, and some autistic people need to communicate in other ways. Some autistic people also have intellectual disabilities, and some autistic people don’t. Some autistic people need a lot of help in their day-to-day lives, and some autistic people only need a little help. All of these people are autistic, because there is no right or wrong way to be autistic. All of us experience autism differently, but we all contribute to the world in meaningful ways. We all deserve understanding and acceptance. Every autistic person experiences autism differently, but there are some things that many of us have in common.

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1. We think differently. We may have very strong interests in things other people don’t understand or seem to care about. We might be great problem-solvers, or pay close attention to detail. It might take us longer to think about things. We might have trouble with executive functioning, like figuring out how to start and finish a task, moving on to a new task, or making decisions. Routines are important for many autistic people. It can be hard for us to deal with surprises or unexpected changes. When we get overwhelmed, we might not be able to process our thoughts, feelings, and surroundings, which can make us lose control of our body.

2. We process our senses differently. We might be extra sensitive to things like bright lights or loud sounds. We might have trouble understanding what we hear or what our senses tell us. We might not notice if we are in pain or hungry. We might do the same movement over and over again. This is called “stimming,” and it helps us regulate our senses. For example, we might rock back and forth, play with our hands, or hum.

3. We move differently. We might have trouble with fine motor skills or coordination. It can feel like our minds and bodies are disconnected. It can be hard for us to start or stop moving. Speech can be extra hard because it requires a lot of coordination. We might not be able to control how loud our voices are, or we might not be able to speak at all–even though we can understand what other people say.

4. We communicate differently. We might talk using echolalia (repeating things we have heard before), or by scripting out what we want to say. Some autistic people use Augmentative and Alternative Communication (AAC) to communicate. For example, we may communicate by typing on a computer, spelling on a letter board, or pointing to pictures on an iPad. Some people may also communicate with behavior or the way we act. Not every autistic person can talk, but we all have important things to say.

5. We socialize differently. Some of us might not understand or follow social rules that non-autistic people made up. We might be more direct than other people. Eye contact might make us uncomfortable. We might have a hard time controlling our body language or facial expressions, which can confuse non-autistic people or make it hard to socialize. Some of us might not be able to guess how people feel. This doesn’t mean we don’t care how people feel! We just need people to tell us how they feel so we don’t have to guess. Some autistic people are extra sensitive to other people’s feelings.

6. We might need help with daily living. It can take a lot of energy to live in a society built for non-autistic people. We may not have the energy to do some things in our daily lives. Or, parts of being autistic can make doing those things too hard. We may need help with things like cooking, doing our jobs, or going out. We might be able to do things on our own sometimes, but need help other times. We might need to take more breaks so we can recover our energy.

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PDA Autistic Profile

 

Some children seem to be born saying No. They say No to the park, no to playing games, no to things which all the other children seem to love. The No comes so fast that it can be bewildering – and yet when you push back on it, it comes back even stronger. It can feel like life is a minefield of No’s. Any direction you look in, there’s another No on the horizon.

Parents try so hard in this situation. They coax and plead, persuade and promise ice cream. When that doesn’t work they start to shout or tell the children off. Yet everything they do seems to make things worse. They don’t understand what is going on for their child – and no one is happy.

Some children experience the demands of the world around them as a threat. They feel pressured by all the requirements and expectations. The feelings are uncomfortable – and so they act to protect themselves. With a No.

The No is a shield. It protects them from uncertainty, from other people’s agendas and waves of unmanageable feelings. It keeps them safe – but it also stops them from doing things. The shield can become a cage.

-dr. Naomi Fischer

 

PDA is the nervous system trying to protect you from perceived "harm",

e.g. something that is hard, and triggers your nervous system,

exhausts you, requires you to mask and causes you

to feel anxiety and dysregulation.

 

The following core characteristics commonly observed in PDA make it more difficult to observe autism: 

1. Resistance and avoidance of everyday demands, including those that are perceived as trivial or routine.

2. An overwhelming need to be in control and avoid being controlled by others.  

3. Uses Social Strategies as part of their avoidance.

4. Surface social communication abilities, despite difficulties with social interaction and understanding.

5. ‘Obsessive’ behavior, often focused on other people or can be focused on performance demands (due to acute anxiety).

6. Appears comfortable in role play and pretend, sometimes to an extreme extent.

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The most widely discussed characteristic of the PDA Autistic Profile is demand avoidance, which means that individuals with PDA resist and avoid the ordinary demands of life to an extreme extent, including things they enjoy. 

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Unfortunately, people with PDA often face misunderstanding and misdiagnosis. PDA can mask or influence the presentation of Autistic traits, leading to confusion and difficulty in identifying autism. Additionally, PDA can often go unrecognized and is frequently misdiagnosed with behavioral disorders (such as ODD and conduct disorder), leading to a blame game that puts the burden on the individual and their parents for their explosive meltdowns and responses to autonomy threats. This can leave parents feeling helpless and confused after trying a variety of therapies, medications, and parenting tactics.

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It is crucial to recognize and understand the characteristics of PDA in order to support individuals with PDA. Recognizing and understanding the characteristics of PDA is crucial for effectively supporting PDAers.

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The neurodivergent nervous system tends to be more rigid, meaning it more easily flips into a stressed state, making simple, everyday demands like “put on your shoes”, "go to class", challenging for people with PDA. Therefore, low-demand parenting approaches are often recommended to support individuals with PDA, focusing on reducing demands and offering choices that promote autonomy.

 

What are demands? 
Demands in PDA are many and cumulative. It can be helpful to think about some of the different ‘types’ of demands. Thank you to PDA adult and advocate Julia Daunt for sharing this image with us:

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Let’s first look at direct demands. Direct demands are requests or questions made by other people or situations – such as ‘put your shoes on’, ‘sit here and wait’, ‘pay this bill’ or ‘would you like a drink?’. In addition to these more obvious direct demands, there’s a whole raft of indirect and internal demands, including:

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• Time – time is an additional demand on top of the demand itself

• Plans – advance planning may lead to increased anxiety as the time/date for ‘the plan’ nears, but equally the intolerance of uncertainty that is a key factor in PDA may make ‘spur of the moment’ activities tricky …

• Questions – the expectation of being required to respond to a direct question can be disabling

• Decisions – sometimes knowing a decision has to be made makes it a demand, or ‘options paralysis’ may set in if there are too many possibilities

• Internal bodily demands – such as thirst or needing the bathroom

• Thoughts/desires – internal feelings

• Uncertainty – research from Newcastle University showed that intolerance of uncertainty is a significant factor in PDA, with PDA autistics needing to know and feel in control of what’s going on

• Praise – this carries the implied expectation that the action will be carried out again or improved on next time, and so may not achieve the positive reinforcement that may be intended

• Transitions – the demand to stop and switch what you’re doing and also the uncertainty around what may come next

• Expectations – from others and of yourself

• Sensory Regulation -  Sensory overload & sensory integration difficulties

• Peopling - Other people’s ‘energy’ and presence

• Things we want to do – like hobbies, seeing friends or special occasions – so not just the things we might not want to do like housework or homework.

 

Then there are demands within demands – the smaller implied demands within larger demands (for example, within the demand of going to the cinema are the demands of remaining seated, responding appropriately, sitting next to other people you don’t know, being quiet etc. etc.).

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And there are the many “I ought to” demands of daily life – getting up, washing, brushing teeth, getting dressed, eating, cooking, chores, learning, working, sleeping … the list goes on.

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Demands will be perceived differently by different individuals, and response to demands may also be variable (please see helpful approaches for children and self-help & coping strategies for adult PDAers for more on balancing demands and tolerance for demands). But once you begin to look at life in terms of demands you can see how all pervasive they are and how difficult things might be for someone with a PDA profile of autism.

 

Autism & ADHD Overlap

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Dr. Neff explains that when we hear about autism and ADHD, we may think of two distinct disorders, but the reality is much more complex. Both conditions frequently co-occur, and in many cases, a person who is autistic may also have ADHD, and vice versa. This overlap is not just anecdotal; research has shown that the two conditions share a great deal of genetic and neurobiological overlap.

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When it comes to providing support for AuDHDers, taking an individualized and holistic approach is essential. Additionally, incorporating and respecting neurodivergent identities and approaching care holistically, rather than trying to change them to fit neurotypical standards, is critical. Supports may include things like: 

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• Providing accommodations to support sensory needs, such as access to quiet spaces, the use of noise-canceling headphones, and adjusted lighting. 

• Neurodivergent affirming care is crucial—meaning you value and respect the person’s neurodivergent identity throughout treatment. And encouraging them to incorporate their neurodivergent identities in an affirmative way. 

• Supporting nervous system regulation can also be beneficial, such as offering anxiety management techniques or reducing overstimulation. 

• Executive functioning supports, such as creating structure and routines and strategies for time management, organization, and planning, may be useful.

• Leaning into their strengths, interests, and preferences. These strengths can include a high level of creativity, high visual-spatial abilities, an intense focus on special interests, and an ability to think outside the box. This is important because our challenges can often overshadow the unique strengths of Autistic-ADHDers. ​