Currently, autism diagnoses are not separated into different types of autism, though this was not the case prior to 2013.
Today, autism spectrum disorder is an umbrella diagnosis that encompasses presentations that were previously divided into separate diagnoses or types of autism. However, some in the medical community believe there should be separate diagnoses for more severe presentations of autism in order to provide better services to those who need them.
How Do Doctors Describe Autism Right Now?
Doctors use the Diagnostic and Statistical Manual of Mental Disorders (DSM) when placing patients into diagnostic categories. In the fifth edition, issued in 2013, the autism world changed dramatically.
Prior versions grouped autism under the category of pervasive developmental disorders. This category included the following conditions:
- Autism
- Asperger’s syndrome
- Childhood disintegrative disorder
- Rett syndrome
- Pervasive developmental disorder not otherwise specified (PDD-NOS)
The borders between these conditions were porous, experts explain. Someone visiting one doctor could get a diagnosis of autism. The next day, that same person might get a diagnosis of PDD-NOS from a different doctor.
Diagnostic confusion leads to blurred treatments and stressed families. They don’t know which label is true, and they don’t know whom to trust.
In the DSM-5, these conditions were replaced with one term: autism spectrum disorder. That language encompasses the many commonalities these conditions share. The use of the word spectrum recognizes that people show a range of characteristics with some people having more (or less) impairment than others.
Doctors will use the term autism spectrum disorder (ASD) when discussing patients. Despite this, you might hear families discussing Asperger’s syndrome or PDD-NOS in casual conversation, says the Autism Society. These terms are still widely circulated.
Autism Spectrum Disorder: The Accepted Term
Autism spectrum disorder is the accepted term for people with autism symptoms. This one term encompasses many people, behaviors, and levels of impairment.
Autism Speaks explains that no one is exactly sure what causes ASD. It’s likely that some combination of genetics and environment is involved. Similarly, researchers aren’t sure what causes some people to live with mild impairment, while others need around-the-clock care and support.
This is why individualized treatment approaches are so important. There’s no such thing as a one-size-fits-all approach to treating autism.
Years of observation highlight typical autism signs and symptoms, which include changes in these areas:
- Responses to stimulus: People with autism may not point at objects to highlight interest, and they may not look at things others point to.
- Relationships: They may not easily relate to other people. Some people don’t seem troubled by a lack of connection, while others want to get close and aren’t sure how to make it happen.
- Touch: Some autistic people dislike being hugged, held, patted, or squeezed, even by people they know and trust.
- Speech: Some echo or repeat words while forming few full sentences. Others don’t talk at all. Some talk extensively, but only about subjects that interest them.
- Routine: Many autistic people like to stick to the same schedule every day, and they feel distressed when things change.
- Senses: Some people with autism feel overwhelmed by loud noises, strong scents, or high levels of visual stimuli.
- Restricted and repetitive behaviors: People with autism tend to repeat behaviors that might seem nonpurposeful to others.
ASD encompasses a spectrum. Some people have significant impairment, while others seem only moderately affected by the diagnosis. The DSM offers three severity levels for ASD:
- Level 1, requiring support: Someone at this level has trouble initiating interactions and shows decreased interest in relationships. Their inflexible behavior leads to difficulty with everyday activities.
- Level 2, requiring substantial support: At this level, people have marked difficulty with verbal and nonverbal communication. They have limited social skills. Their inflexibility is obvious to casual observers.
- Level 3, requiring very substantial support: Someone at this level has severe communication difficulties, including both verbal and nonverbal modes. They have marked difficulty in functioning.
No laboratory tests or physical exams help doctors either diagnose ASD or place people on the spectrum. Instead, experts use observation skills and question-and-answer tests to determine how their patients function.
Diagnosis is important, researchers say, especially at an early age. Children diagnosed with autism before age 4 tend to get effective treatment. Children diagnosed later tend to get less effective therapies, including medication.
Children as young as 2 years old should have routine autism screenings in wellness checks with doctors. Some school districts hold autism screenings too. Parents can also ask for special assessments if their child’s development seems somehow delayed or they spot the autism symptoms mentioned earlier.
A Push for Classification of Types
While the move to a single diagnosis to encompass all presentations of autism was intended to remove barriers and improve services, some clinicians feel this change has been detrimental.
In December 2021, the Lancet Commission released a report detailing recommended changes to improve quality of life for autistic individuals. Among their recommendations, they advised the creation of a new diagnostic category for people on the most impaired end of the autism spectrum. This includes those who have significant intellectual disability (defined as an IQ under 50), are largely or wholly nonverbal, and require intensive assistance and supervision.
The commission advised that this new category be termed profound autism. And with its creation, the needs of this underserved group could be prioritized and better met.
This category will recognize that different people with autism might have vastly different needs. The distinction could improve efforts to develop new treatments and educate others about differences in autism.
In order to be officially added as a new diagnostic category, it would need to be included in the DSM or WHO’s International Classification of Diseases (ICD).
Outdated Terms That Describe Types of Autism
Your doctor won’t use these phrases to describe ASD. But these terms can still be useful to know as you work to understand how a loved one thinks or what that person needs.
Asperger’s Syndrome
People with this condition won’t see the term Asperger’s syndrome or Asperger’s disorder on any formal paperwork. This is no longer a recognized diagnostic term. Instead, these people might be described as living on the high-functioning end of the autism spectrum.
People with Asperger’s syndrome have traditional autism difficulties. They struggle with relationships, communication, and order, just as everyone on the spectrum does. But they have behaviors that set them apart.
The Autism Society explains that classic ASD is often identified by speech delays. Children with autism may not speak at all, or they may speak later than their peers. Children with Asperger’s often have very good language skills, but they may:
- Have unusual speech patterns.
- Speak in a monotone voice.
- Talk too loudly or in an unusual pitch.
- Dominate a conversation, as they may not understand give and take.
Most people with Asperger’s have normal to high levels of intelligence that can be measured with traditional tests. They may excel in standard educational or work environments, and they might function quite well with limited but sustained support from others.
People with Asperger’s may also benefit from therapy to help them boost communication skills. It’s common for people with Asperger’s to long for close relationships, but their unusual communication styles can earn them hurtful and unhelpful labels like “weird” or “awkward.”
Therapy could help people understand how others expect them to communicate. It could even help people with Asperger’s to explain their thoughts, feelings, and wishes. Deepening understanding through conversation could help them form those connections they yearn for.
Childhood Disintegrative Disorder
Most people with autism develop symptoms somewhat predictably. Children start talking later than their peers, and once problems appear, they don’t worsen or disappear. People with childhood disintegrative disorder (CDD) are different.
Children with CDD have what experts consider a severe, or low-functioning, form of autism, but they don’t start off life that way. In some children, symptoms don’t appear until age 10.
Children with CDD hit early development milestones. They may:
- Accept physical affection.
- Make eye contact.
- String together two- or three-word phrases.
- Relate to others.
- Develop some self-care skills, like toileting.
Then, they lose those abilities. In a period lasting a few months, children seem to move back through the phases, losing all the skills they developed. Some children also develop a prodrome syndrome in which they experience headaches, anxiety, and nervousness.
These skills aren’t regained without therapy, and most people with CDD need help for the rest of their lives. Even with therapy, they may not succeed in independent settings.
Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS)
Some people don’t fit into diagnostic boxes with ease. They may have some symptoms, but others don’t fit. They may have some problems, but they don’t seem severe. In the past, people like this who didn’t quite fit into the set types of autism were given the PDD-NOS label.
Experts sometimes call this condition atypical autism, and they explain that people with it have:
- Impairment after age 3. Children younger than 3 years old don’t qualify for this diagnosis.
- Some unusual behaviors. They have demonstrated difficulties in accordance with some autism symptoms.
- Some atypical behaviors. They may not have all the autism symptoms, or they may have some that aren’t normally associated with autism.
People with PDD-NOS have mild forms of autism, experts say. They may have a few social or communication challenges, but they may have many strengths too.
Some people with PDD-NOS need help to live an independent life, find challenging work, and build healthy relationships. Therapy can be intensely helpful.
Rett Syndrome
Rett syndrome is a rare genetic disorder primarily seen in girls. In many ways, it mimics the features of autism and CDD. These children might lose previously developed language and self-help skills, for example.
One of the main features of Rett syndrome is the loss of functional hand skills. These children tend to stop using their hands to do things. Instead, they spend a large amount of time clasping their hands or wringing their hands together.
Rett syndrome is also associated with the loss of motor development and low muscle tone. As a result, children with Rett syndrome often require lifelong assistance and ongoing therapy.
Treatment for All Types of Autism
Everyone with autism spectrum disorder is different, and there is no one-size-fits-all treatment that helps every single person in the same way. The best treatments are tailored to fit the individual, and they help people with ASD overcome challenges and build skills.
Behavior or psychological therapy is often helpful for people with autism. Doctors refer patients to professionals, and those experts build a treatment team that might include:
- Parents
- Siblings
- Doctors
- Technicians
A mental health expert builds and administers the treatment program, and the wider team helps to reinforce lessons between appointments. When it comes to autism treatments, practice and repetition lead to sustained change. Families make that possible.
Core challenges vary between people, but many programs focus on these aspects:
- Communication: Asking for a desired object, explaining feelings, or outlining a plan could be therapy targets.
- Conversation: Understanding how to listen and respond could take up some therapy sessions.
- Generalizing: Lessons learned at home should be applied in other settings too.
People with low-functioning autism may greatly benefit from therapies that help them master self-care tasks, including brushing their teeth, handling bathroom duties, or washing their hands. They might also display forms of challenging behavior, like aggression, that require additional treatment.
Applied behavior analysis (ABA) is the gold standard for autism therapy. Therapists identify what clients can and cannot do with ease, and they isolate one or two tasks for targeted therapy. Then, they break those larger tasks into smaller pieces and run drills until the procedures become habitual.
Therapy is intensive, and it can seem a little repetitive, but that repetition is important. When provided appropriately, ABA therapy can be life-changing for people with autism.
Before researchers discovered ABA therapy, autism was largely considered untreatable. Now, experts understand that people with ASD benefit from this type of focused, intense intervention to help them build skills. With it, people can get better.
Autism care does come with limits. People who are nonverbal , for example, may never gain the ability to speak. Some autistic people may always feel uncomfortable in some social situations. Therapy doesn’t cure the issue, but it can help the person to cope with it better, reducing symptoms and gaining skills that can help.
Therapy can help people with autism to communicate with the world around them. They can use the care to make their thoughts and feelings more understandable to the people they love. That could make a big difference in the lives of everyone.
References
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- What Is Autism Spectrum Disorder? (March 2020). Centers for Disease Control and Prevention.
- Autism Spectrum Disorder. (2013). Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition.
- Children Diagnosed With Autism at Earlier Age More Likely to Receive Evidence-Based Treatments. (August 2016). American Psychiatric Association.
- Asperger’s Syndrome. Autism Society.
- High Functioning Autism and Other Types of Autism. Autism Parenting Magazine.
- Asperger’s Syndrome. Psychology Today.
- Childhood Disintegrative Disorder. (June 2014). Patient.info.
- Childhood Disintegrative Disorder. (November 2018). Medscape.
- The Most Terrifying Childhood Condition You’ve Never Heard Of. (July 2016). Spectrum.
- Pervasive Developmental Disorder (Not Otherwise Specified). (June 2018). Research Autism.
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- Autism Spectrum Disorder. (March 2018). National Institute of Mental Health.
- Autism. American Speech-Language-Hearing Association.
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- What Is Autism Spectrum Disorder? Stanford Children’s Health.
- The Lancet Commission on the Future of Care and Clinical Research in Autism. (December 2021). The Lancet.
- The Lancet Commission Formally Recognizes the Term ‘Profound Autism’. (December 2021). Autism Science Foundation.
- Push to Add ‘Profound Autism’ Label Gains Steam. (December 2021). Disability Scoop.