Severe autism is the most significant level of autism. Also known as level 3 autism, it often means a person is nonverbal or has very limited speech and restricted social communication skills.
Severe autism also often comes with sensory processing issues and extreme difficulty dealing with changes in routine. Common behavioral challenges include aggression, running or wandering away, and self-injury.
People with severe autism experience profound challenges and requires very substantial support. They are often unable to live independently and require 24-hours-a-day care.
This article discusses severe autism, its symptoms, and its challenges. It also explains the therapies available for people with severe autism and how to find caregiver support.
There are three levels of autism. Level 1 is considered more high functioning and independent, level 3 is the most debilitating form of the disorder, and level 2 is somewhere in between. Some symptoms of autism are common to all levels, while others are typically only present in people with severe autism.
To be diagnosed with autism, symptoms must impair daily life, and level 3 symptoms have the greatest impact in this regard. They lead to the most significant amount of disability and challenges, which is why round-the-clock support and supervision are usually needed.
Everyone with an autism spectrum disorder (ASD) has a difficult time with social skills and communication.
People with severe autism are most likely to be nonverbal, or entirely unable to use spoken language. They may also appear not to notice the people around them.
Many people on the autism spectrum have sensory dysfunction. That means they’re either too sensitive to or not sensitive enough to:
Autistics also struggle with hidden sensory systems, including:
Interoception: Internal body cues like hunger, thirst, needing to use the toilet, and ambient temperature.
Proprioception: The sense of self-movement, action, force, and location.
Vestibular: Balance, spacial orientation, and coordination.
People with severe autism tend to be extremely sensitive, to the degree that crowded, bright, or noisy environments can be overwhelming. Sensory overload can lead to an autistic meltdown.
Many people with autism have high IQs. But some have IQs at or near 75, the cutoff for what used to be called mental retardation.
Generally speaking, people with severe autism tend to have low to very low IQs, even when tested using non-verbal testing tools. It’s important to know, however, that appearances can be deceiving.
Some people with severe autism can learn to communicate. They may use sign language, spelling boards, or other tools like augmentative and alternative communication (AAC) devices.
Some level 3 autistics are quite articulate. They prove that at least some people with severe autism are more capable than they may appear.
Most people on the autism spectrum have repetitive behaviors and self-stimulatory behaviors.
Higher functioning individuals may flap their hands, rock, or flick their fingers. Often, they can control these behaviors for a period of time when necessary.
People with severe autism are likely to have such behaviors. And those behaviors can be extreme and uncontrollable. Common ones are violently rocking, door slamming, and moaning.
People with severe autism may have physical symptoms that only sometimes appear with less profound autism. These may include:
Because of their communication difficulties, such issues can go undetected or undiagnosed. Undiagnosed physical illness can lead to physical pain, which may worsen behavioral issues.
The extreme behaviors associated with severe autism may stem from frustration, sensory overload, or physical pain.
Some people with severe autism express themselves through frightening behaviors. If the behaviors can’t be managed, they can become dangerous.
In many cases, it’s not safe for family members to live with a severely autistic teen or adult.
While self-injury can occur among people with milder forms of autism, behaviors such as head-banging and pica (eating non-food items) are far more common among people with severe autism.
Aggression is relatively rare in autism. But it’s certainly not unheard of, particularly among people with more severe symptoms (or those with other issues, such as severe anxiety).
People with level 3 autism may act out by hitting, biting, or kicking. They may also have behaviors, such as fecal smearing or door banging, that require a quick and effective response.
It’s common for people with severe autism to wander off or run away. Often there’s no obvious cause for and no intended destination. This is sometimes called eloping.
Making the situation worse, people with severe autism generally don’t have the tools to communicate with first responders.
This can put the person with ASD in dangerous situations. In some cases, special locks, alarms, and identification tools are necessary to keep them from eloping.
Severe autism isn’t curable. However, many medical and non-medical treatment options can address symptoms. Some approaches are more common sense than anything else.
Treatments for severe autism usually include medications for anxiety and related issues. Anti-psychotic drugs and antidepressants can also be effective.
It’s important to carefully monitor the autistic person’s responses to drugs. Side effects or negative interactions can cause as many problems as they solve.
Children with severe autism often respond well to applied behavior analysis (ABA), a form of behavioral therapy often provided free by schools and early intervention programs.
Sensory integration therapy can be helpful for addressing serious sensory challenges. Other useful therapies include:
Few people with severe autism are able to describe physical symptoms or problems. So, it’s a good idea to regularly check for physical things that may be exacerbating problem behaviors.
It’s not uncommon, for example, to discover that a child’s apparently aggressive behavior is actually a response to severe gastrointestinal pain. That pain may go away with the right dietary changes.
Once the pain is gone, they usually find it much easier to relax, engage, learn, and behave appropriately.
Even if someone with severe autism learns to use spoken language, they may have a hard time asking or answering questions. They may also repeat sounds without assigning meaning to them.
On the other hand, many of those same people who cannot speak are able to communicate through the use of sign language, picture cards, digital talking boards, and keyboards.
Communication, of course, is the key to any kind of engagement and learning.
Sensory issues can be minimized by creating a highly structured and low-stress environment. Things that may help someone with severe autism include:
A very regular routine.
Few loud noises.
Parents and caregivers of people with severe autism often have a lot on their plate. Caregiver burnout is common.
It is important to learn to make time for yourself. Taking care of your emotional, physical, and social needs is crucial for caregivers.
Support services are often available and may include:
Caregiver support meetings (either for level 3 autism or all levels of autism).
Family care and case management to guide you through healthcare, education, and legal systems.
Online support boards.
One-on-one therapy or counseling.
Respite care to provide give you a much-needed break.
In the United States, autism support services are often administered through the state or county health department. Search online for your state’s department of autism services.
Severe autism, diagnosed as level 3, causes debilitating symptoms. Someone with level 3 autism may be non-verbal and be unable to engage with people. Sensory stimuli may be overwhelming. Cognitive deficits are common. Repetitive behaviors may be extreme and uncontrollable.
These symptoms make for significant challenges such as self-injury, aggressive behaviors, and eloping.
Treatment includes medications and additional therapies (physical therapy, speech therapy). With time and effort, the person with level 3 autism may be able to communicate.
When someone in your life has severe autism, it can help to educate yourself about autism and how it’s treated and managed. Work closely with the healthcare team and learn from them as well.
And as you navigate everything, remember that you are not alone in your experience (although it may feel that way sometimes). There are other people who understand exactly what you’re going through.
Connecting with them may not only help you cope, but provide you with additional suggestions that can help ease your day-to-day life.