What You Should know About Severe Autism: Symptoms, Diagnosis, And Treatment

The CDC estimates of every 68 children, one will be on the autism spectrum — and therewith, presumably, the same number of adults. Because autism is a spectrum, those on it will share some common traits but manifest them in radically different ways. People on the "milder" end of the spectrum used to have their own separate diagnoses; Asperger's and pervasive developmental disorder-not otherwise specified. All autism-related diagnoses have now been integrated into a single diagnosis of autism spectrum disorder.

What are the characteristics of severe autism? How is it diagnosed?

If you take a look at the diagnostic criteria found in the DSM-5, the current edition of the diagnostic and statistical manual of mental disorders, you'll see two main areas that are each divided into possible manifestations. They are:

• Ongoing struggles with social communication and interaction that manifest in various contexts. These can include anything from finding it hard to make friends and maintain relationships to (marked) differences in non-verbal communication (such as eye contact, gestures, and so on), to not knowing how to share interests or how to start a conversation. 
• Repetitive and limited behaviors, interests, and activities, which can again mean a whole lot of different things. Stimming — or repetitive behaviors like lining objects up, flapping hands, or spinning around, can be part of this. So can a strong need for routines and sameness, being extremely passionate about a few and only a few subjects, and becoming distressed by change or overwhelmed by sensory input like bright lights or annoying noises.

Autism is further divided into "levels", with "level one" autists requiring some support, "level two" autists needing more support, and "level three" autists depending on rather substantial support to be able to function optimally. The DSM-5 elaborates:

• At level three, autistic people will have severe struggles with social communication and interaction that affects their functioning immensely.
• Severely autistic people are generally unable to initiate communication effectively or to respond to social approaches in a typical way.
• Severely autistic people may be non-verbal or be able to use very few words (which doesn't mean they cannot communicate in other ways). 
• The behavior of level three autistic people is different in a way that is immediately apparent, including very a very strong need for routine and great distress when change happens. 

This is quite vague, we'll give that to you. One study went into more details by explaining that people considered to be on the severe end of the autism spectrum often, but not always, also have intellectual disabilities. They may be able to use some words, but back-and-forth communication is difficult, at least verbally. When they are children, these people are unlikely to be able to attend a regular classroom, and they are often unable to conduct daily activities like brushing their teeth or dressing themselves. Self-harming behaviors like head-banging and skin-picking are also not unusual. Round the clock care is, therefore, necessary.

This study, entitled Severe Childhood Autism: The Family Lived Experience, further notes that it's quite difficult to make this diagnosis, as testing can be a hard task. 

Are there any treatment or management options for severe autism?

Yes. Autism is a neurological condition — there is no cure, and if you want to get into the topic of whether there should be one, things will get rather controversial. Various therapies and medications exist, however, with different goals. For instance:

• Speech therapy.
• Occupational therapy, which helps equip people with the skills they need in everyday life.
• Physical therapy, which can help build strength, physical flexibility, and motor skills.
• Social skills therapy and mentorship.
• Augmentative and alternative communication (AAC) devices, which allow non-verbal autistic people to communicate through other means, including using pictures or in writing. These devices can also facilitate text-to-speech.
• Medications can be employed to counter anxiety and depression, or for other comorbid conditions. Nutritional supplements can also fall under this heading as people who have a limited diet need them to get the right nutrients.

We'd urge any parent of an autistic child to look into the potential negative consequences of certain therapies, including Applied Behavioral Analysis and Floortime. A document from the Autistic Self Advocacy Network (ASAN) — linked in the Links box below — explains how these therapies can dehumanize rather than help people improve their skills in a way that honors the person's humanity. ASAN emphasizes the importance of social inclusion, teaching self-advocacy, and making spaces more accessible to neurodiverse people. 

If you're a parent and your child is considered to be severely autistic, a lot of this will be up to you. Everyone deserves the right to compassionate, humanity-respecting care, and you'll want to make sure that any therapies your child attends help them thrive as autistic people, rather than seeking to make them appear as neurotypical as possible. Good treatment goals, ASAN says, would be those that "focus on skills that would help them understand their own disabilities and coping with sensory overload, as opposed to therapies that made people look less autistic on the surface".