SELECTIVE MUTISM, NON-VERBAL AUTISM, AND NON-SPEAKING AUTISM
October is Selective Mutism Awareness Month. And awareness is much needed. Selective Mutism is still widely overlooked, misunderstood, misdiagnosed, and the term used wrongly for other conditions. Especially in the autism community, being non-verbal or non-speaking are often falsely called Selective Mutism.
WHAT IS SELECTIVE MUTISM?
Selective Mutism is an anxiety disorder. It is characterized by a persons inability to speak in select social settings because of severe anxiety while the same person is able to speak when they are comfortable, relaxed, and secure. While Selective Mutism is widely regarded as a childhood disorder, adults with it do exist. No all people with Selective Mutism get diagnosed and/or treated in time to overcome it before adulthood. Not everyone completely overcomes it either.
The word ‘Selective’ is often misunderstood to mean a person with Selective Mutism can choose when to speak. This is false and a very harmful misinterpretation. ‘Selective’ refers to ‘selective settings’ in which a person loses their ability to speak. There is no choice involved.
This is why I prefer calling it Situational Mutism or Intermittent Mutism, and also advocate for changing the official diagnostic label accordingly.
The inability to speak is also just one symptom of Selective Mutism. Because it is an anxiety disorder the other symptoms are likely all linked to anxiety:
– other anxiety disorders like social anxiety, separation anxiety, Obsessive-Compulsive Disorder, Generalized Anxiety Disorder
– other physical symptoms of anxiety-like stomach ache, nausea, headaches, racing heart, sweating
– a blank and frozen look is common when triggered
– problems with communication and social interaction
– sensory processing difficulties are common triggers for anxiety
SELECTIVE MUTISM FOR ME
I had big issues with Selective Mutism when I was a child, especially in school. But also generally in environments and with people that intimidated me.
Because people misinterpreted my mutism as being either shy or oppositional I was neither diagnosed nor treated for it. This lead to my Selective Mutism persisting into adulthood and causing other problems.
Luckily I now understand it and have done a lot of work on my anxiety. That’s why I currently very rarely have Selective Mutism episodes. I now use an AAC device but it doesn’t work for my rare episodes of Selective Mutism because the anxiety freezes me, leaving me unable to operate my device.
For me it is a very distinct feeling of suddenly being completely frozen. I know exactly what I want to say but just can’t make the words come out and usually cannot move either.
WHAT ARE NON-VERBAL AND NON-SPEAKING AUTISM?
Non-verbal or non-speaking Autism are in themselves not a diagnosis. Autism is the diagnosis.
Being non-verbal means using little to no words to communicate.
Being non-speaking means not using oral speech.
There is no clear line between being verbal and non-verbal. There’s also no clear line between being speaking and non-speaking. Autistic people may be able to use a few spoken words, use scripting, not use spoken language but are able to communicate in other ways like AAC devices, typing, picture cards, etc. It is common for autistic people to be intermittently non-verbal or non-speaking.
One possible reason for being non-verbal or non-speaking is apraxia. Apraxia is a neurological condition. It is characterized by what some call the “mind-body-disconnect”. Apraxic people struggle with controlling their body’s motor functions, including those necessary for speech. This can make speech difficult to impossible.
Other than Selective Mutism, being non-verbal and non-speaking are not dependent on anxiety. Anxiety can make speech more difficult the same way it makes everything in life more difficult but it doesn’t have to be present for someone to become non-verbal or non-speaking.
Also other than Selective Mutism, being non-verbal and non-speaking are not tied to selective settings. An autistic person can become non-verbal or non-speaking in any setting, just as well as they can become verbal and speaking in the same setting another time.
BEING NON-VERBAL AND NON-SPEAKING FOR ME
I become non-verbal or non-speaking if I have more to process than I can. For example, when I am in overload, meltdown, or shutdown, when I am very tired or sick, speech becomes difficult or impossible.
Sometimes I am not able to speak and sometimes I am not able to communicate with words at all. During a meltdown, for example, I can often neither speak nor communicate with words in other ways and am completely non-verbal. During my regular non-speaking periods however I can communicate with my AAC device, or in typing.
It is a very distinct feeling of chaos in my head and sometimes my body. It can be frustrating but I am not otherwise emotionally bothered by it. It is solely a dysfunction of my body. I cannot sort my thoughts, turn them into meaningful words, and make my speech mechanism work to produce meaningful sound.
WHY CORRECT DIAGNOSIS MATTERS
Diagnosis determines treatment. Only correct diagnosis can lead to correct treatment. Only correct treatment can help. Incorrect treatment can cause a lot of harm.
Selective Mutism can go undiagnosed, especially in anyone perceived as female, because of social stereotypes. It often gets misinterpreted as being extremely shy or introverted. It can also go undiagnosed because observing speech in other settings leads to the misconception that a person with Selective Mutism chooses not to speak out of spite or defiance. Being an anxiety disorder, it can worsen tremendously if not treated at all or treated incorrectly.
This can lead to worsening anxiety, other anxiety disorders, isolation, withdrawal, lack of self-esteem and confidence, academic problems, depression, and finally suicidal thoughts and actual suicide.
Non-verbal and non-speaking autism are often misinterpreted as diminished intelligence. Because of this a lot of autistic people don’t get access to alternative methods of communication and people believe they just cannot communicate.
This can lead to a lot of frustration which in turn can lead to meltdowns, and misunderstood aggressive behavior. It can also lead to problems like autistic people not being supported, having their needs met, getting proper education, being able to fulfill their own potential and much more.
A shared problem for people with Selective Mutism and intermittently non-verbal or non-speaking autistic people is the assumption by others that they just don’t want to speak. This is because in both cases there are times in which the person is able to speak.
This leads to being pressured into speaking which in turn leads to an immense amount of stress and also causes the above-mentioned problems.
WHAT CAN HELP?
First of all: Any and all treatment, intervention, therapy, etc. must always be based on the autonomy and informed consent of the person involved. I do not support forcing people into treatments! Yes, this can be difficult. No, that doesn’t mean you can forego adhering to this standard.
THINGS THAT CAN HELP EASE THE ANXIETY OF PEOPLE WITH SELECTIVE MUTISM:
1. All people involved need to understand what Selective Mutism is and be a part in helping the person (family, friends, school, workplace, etc.)
2. Removing all pressure to speak.
3. Offering alternative ways of communication.
4. Building confidence and self-esteem.
5. Learning comfortable ways to communicate and socialize.
6. Positive reinforcement and desensitization.
7. Therapies like Play Therapy, Psychotherapy, Cognitive Behavioral Therapy can help.
8. Medication to relieve severe anxiety can help.
THINGS THAT CAN HELP NON-VERBAL OR NON-SPEAKING AUTISTIC PEOPLE:
1. All people involved need to understand what non-verbal or non-speaking autism is and be a part in helping the person (family, friends, school, workplace, etc.)
2. Removing all pressure to speak.
3. Offering alternative ways of communication.
4. Speech therapy can help some autistic people.
5. Therapies that encourage socialization can help some autistic people (play therapy, social skills groups for example).
I believe that Selective Mutism generally can be considered a negative experience for the person who has it because it is caused by severe anxiety – while non-verbal and non-speaking autism is often a neutral condition.
The anxiety-causing Selective Mutism is something we work to ease and if possible overcome – while accepting and accommodating the mutism.
Non-verbal and non-speaking autism is not something we try to overcome – it is something we accept and accommodate.
In both cases, it is irrelevant which form of communication a person ends up using. All forms of communication are equally valid.
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