Severe ASD Symptoms

How typical is Matthew of others with Autism?

Our film character is a composite of traits of several members of the Bridges-Over-Barriers group that inspired this film: he is not modelled on a single person.

Each adult with ASD is an individual with a unique combination of traits and symptoms. In a gathering of people with ASD, the differences among them are clearer than the similarities. By the time someone is an adult, the symptoms of ASD may be influenced by each person’s life experiences, producing more diversity.

The Bridges members who inspired the film have collectively most of the possible symptoms and complications of severe whole-body Autism.  All body systems can be affected—including brain functions, movement, speech, the gastrointestinal system, sensory and self-regulation systems and sleep. They may have allergies to and intolerances of foods and medications, as well as gastrointestinal and respiratory diseases, sleep and eating disorders. Some combine other neurological disorders with Autism. More than one in three adults living with Autism also has epilepsy. Others may also have Cerebral Palsy and Down syndrome.  Some are impaired in vision and/or hearing. Adults with Autism can have issues of mental health such as anxiety and depression. Living with these challenges can be exceedingly frustrating and painful. What is most impressive is the courage and determination to get around and over the obstacles.

Most Bridges members experience hypersensitivity to stimuli affecting any or all their senses—not just the five basic senses of sight, smell, sound, taste and touch but also the proprioceptive (sense of relative position of one’s body and its parts) and vestibular (balance) senses. They may be sensitive to air pressure, temperature and humidity. It may be very hard to combine two senses at once, such as looking at and listening to a companion, or watching and listening to TV or a DVD. Most have some form of synesthesia, the fascinating phenomenon in which stimulation of one sensory or cognitive pathway leads to automatic, involuntary experiences in a second sensory or cognitive pathway. For example, hearing a name or word may evoke a colour.

Our film shows two key sets of difficulties of life with severe Autism. Most obvious is the near-impossibility of communicating reliably with one’s voice. Even if a person can utter sounds with his voice, these may not make clear sense to a casual listener. Others may assume that the person has no language or cognitive ability. The second set of problems is the extreme difficulty felt by many in co-ordinating and regulating the movements of all muscles and nerves and thus of getting one’s body to do what the mind intends (including speaking).

For many years, the behaviours of severe Autism were interpreted negatively, as deliberately obstructive and evidence of very low intelligence. But another way of understanding is to see that people are challenged by involuntary sensory and movement differences--in starting, stopping, executing, combining and/or switching actions, thoughts, emotions and speech. These neurological differences may also be called motor problems, inertia, sensory overload, apraxia, dyspraxia, echolalia, mutism, behavior disorder, catatonia or clumsiness. A. Donnellan, D. Hill, & M. Leary, Rethinking Autism: Implications of sensory and movement differences. Disability Studies Quarterly, 30, 1 (2010) http://www.dsq-sds.org/article/view/1060/1225

Movement differences affect the complex muscles and nerves that enable most people to speak. This is the most serious difficulty of living with severe Autism, partly because it is often misunderstood by other people. As Martha Leary explains, speaking involves “very complex cooperation among various systems of the body”. 

Consider the body systems involved: free movement of the jaw; agility of the tongue; well-coordinated, effective breath control; moving at the right time; coordinating the movements of these different systems; using facial expressions and gestures that match the meaning of what is said; using the vocal mechanism – ‘voice box’ or vocal folds – with the right amount of force and pitch; keeping the rhythm of a conversation by taking a turn after your partner speaks, and so on.

This alternative view is supported by what the Bridges members say about their lives and challenges and is also reflected in the film.

Not being able to speak does not mean we have nothing to say!

Our lives are impeded by not controlling our movements. Being stuck in our bodies. I feel like I could explode. When I want to do something and am stuck, I feel helpless and sad but sort of resigned. 

When stuck, I usually show it by my hands clasped over my ears. I feel pain in my ears because it is emotionally taxing. Holding my hands over my ears gives me a feeling of control and some comfort. It keeps the storm in. 

I feel that being stuck is the worst part of being autistic and it’s what stops me from having a normal life. I get angry and want to lash out but I’ve learned to be patient and keep it inside. 

I am always in motion because I feel restless. I can’t stop moving because I feel movement inside my body. It is very hard to accept changes. I need help to get going because I get stuck and cannot move. 

I feel stuck and frustrated when I try to do things. I need help to get started and finish my action.
People should know that it is always a struggle, even when there is no outward sign. We all lose it sometimes in different ways. I get hyper, run, scream and clap if it is bad.

I feel like that all the time. I would like to know what makes me so anxious and upset. I do not like it when I lose it but I cannot help it. It is hard to control myself and not know what it is about. It helps to be calm and not get angry with me and not to put me down. 

When we need flexibility but don’t have it, we get agitated. I am struggling with myself and how to be with others when I get upset. When people are hard on me, this makes it worse. I think they are being mad and severe in their judgments. 

I have to struggle with my body every day. Most of the time now, I can keep things under control… But at other times, I have tailspins and go spinning downward. I mean losing my body’s ability. I can’t move. I am rigid. One of the worst things is feeling like my body is not part of me. I am seeing myself from outside and feel my thoughts are not from my head. I need to hold my hands over my ears to keep in control of my urges. My brain is rattled and jumbled like popcorn. I feel disoriented.  

I can be very agitated. It is hard to communicate when our bodies are uptight I still try to type when I am stuck. I focus when I get started. I start to type and my ideas come to me.