Understanding Severe Autism: Challenges & Treatment Options

Severe autism is characterized by substantial impairments in verbal and nonverbal communication, limited social engagement, and intense restrictive or repetitive behaviors. Individuals with severe autism have high support needs and require very substantial assistance with all aspects of daily living.

Autism is a complex neurodevelopmental condition that exists on a spectrum. While all autistic individuals experience difficulties with communication, social skills, and repetitive behaviors, the severity of these challenges can vary greatly from person to person. On one end of the spectrum you have high-functioning autism, where an individual may need support in certain areas but is able to live independently. On the other end is severe autism, also known as low-functioning autism or level 3 autism.

In this comprehensive guide, we will explore what severe autism is, how it differs from other points on the spectrum, the common challenges faced by individuals and families affected by severe autism, and the available treatment options and support services.

What is Severe Autism?

The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) categorizes autism into three levels based on the amount of support an individual needs. They are:

• Level 1: Requiring Support – This is considered high-functioning autism where the individual needs some support in social communication and has restricted behaviors and interests. They are able to function independently for the most part.
• Level 2: Requiring Substantial Support – This is considered moderate autism where the individual needs more substantial support in verbal and nonverbal social communication skills and has more restricted/repetitive behaviors. They have significant challenges with independent functioning.
• Level 3: Requiring Very Substantial Support – This is considered severe autism where the individual has severe deficits in verbal and nonverbal social communication skills, very limited initiation of social interactions, and extreme restriction in behaviors, interests, and activities. They require very substantial support for daily living.

Severe autism is sometimes referred to as low-functioning autism, classic autism, or Kanner’s autism. However, many in the autism community prefer the term “autism with high support needs” as it does not imply a lack of ability.

Some key characteristics of severe autism include:

Limited Verbal Communication

• Most individuals with severe autism are either nonverbal or have very limited verbal skills. They often do not develop meaningful speech.
• Some may repeat certain words or phrases but not use them purposefully to communicate.
• Many are only able to make simple vocalizations to express needs, such as crying when in distress.

Impaired Nonverbal Communication

• Individuals have significant challenges with nonverbal communication skills such as eye contact, facial expressions, body language, and gesturing.
• They often avoid looking at others and do not observe nonverbal cues.
• Expressing needs or sharing interests through nonverbal means can be very difficult.

Minimal Social Interaction

• Individuals with severe autism tend to be disengaged from the world around them, even from parents/caregivers.
• They rarely seek out social interaction and may actively avoid it.
• Developing social relationships is extremely difficult.

Sensory Processing Differences

• Many individuals with severe autism have extreme sensory sensitivities. They may be hypersensitive to sounds, textures, tastes, smells, lights, touch, and more.
• Everyday sensory stimuli can feel intolerable. This often leads to sensory overload meltdowns.
• They may also crave sensory input such as repetitive motions, deep pressure, or certain textures.

Rigid Routines and Rituals

• A strict routine with little variety is common, and any disruption can lead to severe distress.
• Ritualistic behaviors may be exhibited such as rocking, hand flapping, spinning, and repeating odd phrases.
• The individual often develops specific fixations and can be preoccupied for hours with certain objects, topics, or activities.
• Coping with transitions and changes to routines is extremely challenging.

Cognitive Impairment

• Many individuals with severe autism have co-occurring intellectual disability with IQ scores below 70.
• Even those with IQs in the normal range struggle with executive functioning skills, abstract thinking, organization, planning, problem-solving, and cognitive flexibility.
• Developmental delays are common, especially in areas like language development and self-care skills.

How Severe Autism Differs from Other Types of Autism

While all types of autism share certain characteristics, severe autism presents much more profound challenges in many aspects of life. Here’s a look at some of the key differences:

Communication Differences

• High-functioning autism – Has highly developed speech, but struggles with aspects like back-and-forth conversation, interpreting nonverbal cues, and expressing empathy.
• Moderate autism – Has some phrase speech and ability to communicate basic needs, but limited reciprocal conversation.
• Severe autism – Has very little meaningful speech, extremely limited nonverbal communication, and inability to initiate social interaction.

Cognitive Differences

• High-functioning autism – Average to above average intelligence. No intellectual disability.
• Moderate autism – Wide range of intellectual abilities possible, co-occurring intellectual disability may be present.
• Severe autism – Significant cognitive impairment likely. Lower IQ scores prevalent. Poor executive functioning skills.

Independence Level

• High-functioning autism – Can live independently with limited support needed in some areas. Can attend mainstream school.
• Moderate autism – Requires ongoing substantial support. Can attend special education classes. Independent living unlikely.
• Severe autism – Needs constant high levels of support with all activities. Unlikely to attend school. Requires supervised living.

Restrictive & Repetitive Behaviors

• High-functioning autism – Exhibits restrictive behaviors like repetitive motions or speech, but can suppress when needed.
• Moderate autism – Displays more intense restrictive and ritualistic behaviors that interfere with functioning.
• Severe autism – Extremely rigid behaviors and rituals take over entire day. Very distressing if interrupted.

Sensory Differences

• High-functioning autism – Heightened or reduced sensitivities to stimuli like sound, light, and touch. Can manage with tools.
• Moderate autism – More acute sensory processing disorder. Needs aids and environmental adaptations.
• Severe autism – Extreme sensory sensitivities make everyday life overwhelming. Frequent meltdowns.

So while all autistic individuals share core features like social and communication challenges, the extent of disability varies greatly across the spectrum. Severe autism involves substantial impairments that require very high levels of support.

Common Challenges in Severe Autism

In addition to the core symptoms of severe autism discussed above, individuals and their families face many other challenges. Some of the most common include:

Safety Concerns

• Eloping (wandering/running off) is very common and extremely dangerous. Individuals often have no sense of hazards.
• Self-injurious behaviors like head banging, skin picking, eye gouging, and biting oneself can occur.
• Aggression like hitting, kicking, scratching, and biting caregivers may be present. Often stems from frustration.
• Pica (eating non-food items) is a major concern. Items that pose choking hazards must be restricted.
• Difficulty recognizing and avoiding dangers such as walking into traffic or water. Requires constant supervision.

Sleep Disturbances

• Many have chronic sleep problems like difficulty falling/staying asleep.
• Sleep cycle may be disrupted, leading to being awake at night and sleepy during the day.
• Melatonin supplements may help establish proper sleep rhythm.

Gastrointestinal Issues

• Constipation, diarrhea, acid reflux, and abdominal pain are frequently reported.
• Sensory issues, food intolerances, and side effects of medications can provoke GI problems.
• Special diets or medications may be needed for GI symptom management.

Seizures & Epilepsy

• Approximately 30% of individuals with severe autism develop epilepsy.
• Seizures most often begin in early childhood or adolescence.
• Anti-seizure medications are used for management.

Anxiety & Depression

• High rates of anxiety disorders, phobias, and depression are observed.
• Inability to communicate needs often exacerbates anxiety.
• Signs include irritability, agitation, self-harm, and obsessive behaviors.
• Psychiatric medication, therapy, and behavioral plans help manage mental health issues.

Financial & Caregiving Demands

• Requires high levels of specialized care and supervision, often for entire lifespan.
• Significantly impacts family dynamics and finances. Siblings may feel neglected.
• Caregiver stress and burnout is very high. Respite is crucial but often inadequate.
• Government resources and aid programs provide insufficient coverage of costs.

These challenges make life profoundly difficult for individuals with severe autism and those caring for them. But with the right treatment approach, support services, and coping strategies, quality of life can be greatly improved.

Treatment Options for Severe Autism

While there is no “cure” for autism, various therapies and interventions can improve outcomes for those with severe autism. Some of the most common approaches include:

Medications

Pharmacological options aim to alleviate issues like:

• Anxiety and aggression – Antidepressants like SSRIs (Prozac), antipsychotics (Abilify, Risperdal), and mood stabilizers (Depakote, Lithium) are often prescribed.
• Repetitive behaviors – Risperidone and aripiprazole are FDA-approved for reducing repetitive behavior.
• Seizures – Anticonvulsants like valproic acid help control seizures and epilepsy.
• GI problems – Laxatives, antacids, antidiarrheals, and probiotics can provide relief.
• Sleep issues – Melatonin is commonly used to regulate sleep cycle disturbances.

Medications need to be carefully monitored for side effects and adjusted based on the individual’s response and drug tolerance.

Behavioral Interventions

• Applied Behavior Analysis (ABA) – Uses positive reinforcement to build communication, social, self-care, and cognitive skills while reducing problematic behaviors. Considered the gold standard treatment for autism.
• TEACCH – Stands for Treatment and Education of Autistic and Related Communication Handicapped Children. Focuses on visual supports, structured teaching, and accommodations to improve skills.
• Pivotal Response Training (PRT) – Targets “pivotal” behaviors like motivation and self-management to facilitate widespread positive change. Based on ABA principles.
• Speech Therapy – Develops nonverbal communication skills through tools like pictures, signs, electronic devices, and visual schedules.
• Occupational Therapy – Helps with sensory integration, regulation of arousal level, ADLs, and fine motor skills.
• Physical Therapy – Improves gross motor skills, balance, coordination, and address issues like toe walking.

Alternative & Complementary Therapies

Options like art, music, or animal therapy, therapeutic horseback riding, and sensory integration training may provide additional benefits by addressing sensory needs and building social motivation. However, these are not sufficient as stand-alone treatments.

Dietary Approaches

• Gluten-free, casein-free diet (GFCF) – Some find symptom improvement removing gluten and dairy proteins. Helps those with food intolerances.
• Anti-yeast diet – May alleviate GI issues and behavior problems in those with yeast overgrowth.
• Vitamin & mineral supplements – Correcting deficiencies and boosting nutritional status may lessen some autism-related symptoms.

Supporting Caregivers of Those with Severe Autism

Parents and caregivers of individuals with severe autism often carry an extremely heavy burden. Self-care is crucial to avoid burnout. Support services available include:

• Respite care – Provides temporary relief to give caregivers a break. Can involve in-home care or specialized respite facilities.
• Parent training programs – Teach specialized techniques to manage challenging behaviors, improve communication, and reduce family stress.
• Support groups – Connect with other families facing similar challenges. Share advice, resources, and emotional support. Can be in-person or online.
• Individual & family therapy – Addresses issues like grief over lost expectations, sibling rivalry, depression, and marital strain. Helps develop coping strategies.
• Financial assistance – Government programs like Medicaid, SSI, and other state disability services can offset some costs related to medical care, therapy, and residential services.
• Care coordination – Social workers and case managers help navigate complex healthcare, education, and service systems to ensure families get needed support.

While incredibly difficult, focusing on self-care, joining support networks, and tapping into available resources can help prevent caregiver burnout. Respite is key to recharge.

Hope for the Future

While severe autism presents profound challenges, researchers are constantly working to develop new and better treatments. With early intensive intervention and proper support services, outcomes and quality of life for those with severe autism can greatly improve.

New assistive technologies are also emerging, providing innovative tools for communication, learning, and sensory regulation. Advancements in genetics and neuroscience are uncovering valuable insights into the underlying biological mechanisms of autism.

Though each person’s abilities and potential are different, with the right developmental approach even those with substantial cognitive impairments often learn new skills over time and develop ways to communicate needs and share interests with loved ones.

There is always hope. By partnering with experienced providers, connecting with other families, and advocating for improved community resources, a fulfilling life for individuals with severe autism is absolutely possible.

Start Your ABA Therapy Journey with Jade ABA Today

In-Home ABA Therapy in Maryland

Applied Behavior Analysis (ABA) is considered the gold standard for autism treatment. This evidence-based approach uses positive reinforcement to build real-life skills while reducing problematic behaviors. ABA therapy is highly customized to each child’s unique needs, targeting skills like communication, social interactions, self-care, focus, and more.

Jade ABA Therapy provides top-quality, personalized ABA treatment right in the comfort of your Maryland home. Our experienced Board Certified Behavior Analysts (BCBAs) and trained therapists deliver individualized ABA programs using proven techniques tailored to your child’s specific abilities and challenges.

We partner closely with families to help each child reach their full potential. Our ABA therapy services are available across Maryland including Baltimore, Columbia, Ellicott City, Laurel, Catonsville, Towson, and surrounding areas.

Benefits of In-Home ABA Therapy

Choosing in-home ABA therapy offers many advantages:

• Convenience – Sessions take place in the natural home setting. No need to commute to clinic.
• Customization – Programs tailored specifically to your child and family’s needs.
• Consistency – Skills are practiced in real-world home situations, improving generalization.
• Flexibility – Scheduling is based on your availability. Sessions even possible evenings & weekends.
• Support – Ongoing parent training and collaboration.
• Play-based Learning – Uses your child’s interests and motivators for engagement.
• Data-driven – Detailed progress tracking to inform program adjustments.
• Continuity – Easy transition from early intervention to school-based services.

Starting intensive ABA therapy early provides the best chance of improving functional abilities long-term. Call us today to learn more!

Get Started with World-Class ABA Therapy in Maryland

Don’t wait to get your child the ABA therapy they need to reach their full potential. Jade ABA’s dedicated team of specialists provide compassionate, family-centered care. We’re passionate about guiding each child along their unique journey using the proven principles of ABA.

Call us today at (410) 616-0901 to schedule an initial consultation and assessment. Let us help your child gain skills, confidence, and independence through life-changing ABA therapy conveniently within your Maryland home. We look forward to partnering with you and your family!

You can also email us anytime at info@jadeaba.org. Visit our website at www.jadeaba.org to learn more about how we can help your child thrive.

References

1. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). https://doi.org/10.1176/appi.books.9780890425596
2. Weitlauf, A. S., Gotham, K. O., Vehorn, A. C., & Warren, Z. E. (2014). Brief report: DSM-5 “levels of support:” A comment on discrepant conceptualizations of severity in ASD. Journal of autism and developmental disorders, 44(9), 2471–2476. https://doi.org/10.1007/s10803-013-1882-z
3. Ferguson, B. J., Dovgan, K., Takahashi, N., & Nebel, M. B. (2019). The relationship among gastrointestinal symptoms, problem behaviors, and internalizing symptoms in children and adolescents with autism spectrum disorder. Frontiers in psychiatry, 10, 194. https://doi.org/10.3389/fpsyt.2019.00194
4. McGuire, K., Fung, L. K., Hagopian, L., Vasa, R. A., Mahajan, R., Bernal, P., & Silberman, A. (2016). Irritability and problem behavior in autism spectrum disorder: a practice pathway for pediatric primary care. Pediatrics, 137 Suppl 2(Suppl 2), S136–S148. https://doi.org/10.1542/peds.2015-2851L
5. Eunice Kennedy Shriver National Institute of Child Health and Human Development. (n.d.). What are the treatments for autism? National Institute of Child Health and Human Development.