What is Autism Spectrum Disorder
Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in:
- social interaction,
- verbal and nonverbal communication, and
- repetitive behaviours.
Autism appears to have its roots in very early brain development. However, the most obvious signs of autism and symptoms of autism tend to emerge between 2 and 3 years of age. Both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities.
Who is affected?
ASD occurs in all racial, ethnic, and socioeconomic groups, but are almost five times more common among boys than among girls. According to Prof Petrus de Vries, head of the Centre for Autism Research in Africa, “We don’t really know. However, the global rates are in the region of 1% to 2% and we have no reason to believe that it would be any less here.”
Dr Neil McGibbon, a Cape Town-based clinical psychologist who works with teenagers on the spectrum, believes that “there have been some recent indications that girls might have been overlooked in error and as a result not sufficient research done”. This is because the autism spectrum looks different in girls.
Autism in South Africa
Vicky Lamb, the national education facilitator of Autism South Africa, estimates that about a million people in South Africa have autism, based on global statistics. However, she added, there are not “enough professionals in the country who are able to make a diagnosis”. This shortage of trained professionals means only some of the South Africans with autism will actually be diagnosed. In 2015, there were only 50 child and adolescent psychiatrists serving the population of sub-Saharan Africa.
Differences in language and culture also lower the rate of diagnosis. Some of the tools used to diagnose autism in the English-speaking world are not ideally suited to diagnosis in South Africa and elsewhere on the continent. Prof De Vries and his colleagues are working to translate and adapt these tools to the African context.
The number of people diagnosed with an autism spectrum disorder in South Africa is rising. But this is because more people are being diagnosed, not because the disorder itself is spreading. "Yes, there is a clear increase in numbers,” according to Prof De Vries. “People are more aware, doctors are better at diagnosis and so forth. There seems to be a steady increase of children referred to autism spectrum disorder schools and clinics.”
According to Lamb, as more signs of autism have been identified over the years, so more people have qualified for an autism diagnosis. She added that greater awareness of autism could also explain the increase in the number of cases.
Three types of Autism
Traditionally, there are three different types of Autism Spectrum Disorders:
Autistic Disorder (also called "classic" autism): This is what most people think of when hearing the word "autism."
People with autistic disorder usually have significant language delays, social and communication challenges, and unusual behaviours and interests. Many people with autistic disorder also have intellectual disability.
People with Asperger syndrome usually have some milder symptoms of autistic disorder. They might have social challenges and unusual behaviours and interests. However, they typically do not have problems with language or intellectual disability.
Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS; also called "atypical autism"):
People who meet some of the criteria for autistic disorder or Asperger syndrome, but not all, may be diagnosed with PDD-NOS. People with PDD-NOS usually have fewer and milder symptoms than those with autistic disorder. The symptoms might cause only social and communication challenges.
Signs and Symptoms
ASDs begin before the age of 3 and last throughout a person's life, although symptoms may improve over time. Some children with an ASD show hints of future problems within the first few months of life. In others, symptoms might not show up until 24 months or later. Some children with an ASD seem to develop normally until around 18 to 24 months of age and then they stop gaining new skills, or they lose the skills they once had.
A person with an ASD might:
- Not respond to their name by 12 months
- Not point at objects to show interest (point at an airplane flying over) by 14 months
- Not play "pretend" games (pretend to "feed" a doll) by 18 months
- Avoid eye contact and want to be alone
- Have trouble understanding other people's feelings or talking about their own feelings
- Have delayed speech and language skills
- Repeat words or phrases over and over (echolalia)
- Give unrelated answers to questions
- Get upset by minor changes
- Have obsessive interests
- Flap their hands, rock their body, or spin in circles
- Have unusual reactions to the way things sound, smell, taste, look, or feel
Causes and Risk Factors
Scientist do not know all of the causes of ASDs. However, they have learned that there are likely many causes for multiple types of ASD. There may be many different factors that make a child more likely to have ASD, including environmental, biologic and genetic factors.
Most scientists agree that genes are one of the risk factors that can make a person more likely to develop an ASD.
Children who have a sibling or parent with an ASD are at a higher risk of also having an ASD.
ASDs tend to occur more often in people who have certain other medical conditions. About 10% of children with an ASD have an identifiable genetic disorder, such as Fragile X syndrome, tuberous sclerosis, Down syndrome and other chromosomal disorders.
Some harmful drugs taken during pregnancy have been linked with a higher risk of ASDs, for example, the prescription drugs thalidomide and valproic acid.
We know that the once common belief that poor parenting practices cause ASDs is not true.
There is some evidence that the critical period for developing ASDs occurs before birth.
The Autism Spectrum
Since 2013, doctors no longer use these 3 classifications, because these distinct diagnoses were not always made consistently and may have limited treatment options. Doctors approached each of these diagnoses differently. Rolling the diagnoses into a single category offered a more cohesive approach to treating autism.
“The previous labels were applied very unevenly and did not separate subgroups in a reliable or meaningful way,” says Jeremy Veenstra-Vanderweele, MD, director of child and adolescent psychiatry at Columbia University College of Physicians and Surgeons in New York City. “Depending where someone went for an evaluation, they might walk out with a different diagnosis, even though the recommendations for treatment might be the same.”
He clarifies though that the switch to now putting everyone with autism in the same category does not mean that everyone gets the same treatment. The current standard for autism treatment is to tailor the plan to the individual’s symptoms and functioning, and to the care options available. ”We need to think about the individual with whom we are working and what his or her strengths and difficulties are,” Dr. Veenstra-Vanderweele says. The new categorization of autism makes it easier to do that.
“Autism requires us to have a range of different treatment approaches and treatments offered,” says Thomas Frazier II, PhD, chief scientist at Autism Speaks, an autism advocacy organization. Flexibility throughout the course of treatment is also important. “When a child is diagnosed early on, for instance, we still don’t know yet if that person is high-functioning or will have high cognitive difficulties. Intervention very much shifts dependent on the individual.”
Why the Old Definitions of Autism Were Flawed
The old autism subtypes did recognize that autism is very much a spectrum disorder, meaning different people experience different symptoms. But, there was a lot of grey area in determining what symptoms were most important for putting any one individual into one category versus the other. Veenstra-Vanderweele adds: “The shift to a single diagnosis of autism spectrum disorder reflects the reality that we don’t know how to split up the disorder into groups of people.”
The Criteria Doctors Use to Diagnose Autism Now
The current criteria for diagnosing autism haven’t changed — each former subtype of autism is still considered autism. Currently, to be given a diagnosis of autism, an individual needs to have problems with communication and interaction with other people or restricted interests and repetitive behaviors.
When given an autism diagnosis, the healthcare provider should also specify which of the following areas the individual has problems with:
- Intellectual problems, including those with reasoning or memory
- Problems with language or speech
- Another medical on genetic condition related to or contributing to autism, such as seizures or Fragile X syndrome
It’s also important to recognize that the old autism subtype labels can be helpful and meaningful to some individuals for whom those terms have helped them understand their own disability. And just because doctors don’t use those labels in autism diagnoses anymore, it doesn’t mean they need to be scrubbed from every context, Veenstra-Vanderweele says.
“The term ‘Asperger’s' allowed some people to find a description of others whose experience was similar to their own, and in some cases, connect with a broader community of people,” he says. “This connection can be very helpful and I don’t think any of us would want to take that away from someone who finds it useful.”
The changes to how doctors diagnose autism are important for doctors to have “reliable diagnoses that are consistent across clinicians,” Veenstra-Vanderweele adds. That being said, for individuals or groups within the autism community who still identify with other labels, it’s okay that those terms still exist, he says. But it is important to understand their clinical limitations.
What about Neurodiversity?
At its core, neurodiversity is the diverse spectrum of neurology. We all fall somewhere on the neurological spectrum. Some people are gifted, some are artistic, some don’t communicate verbally. We have people all over the spectrum.
It’s important to realize that neurodiversity isn’t limited to “neurotypical” and “autistic”. There’s a whole lot in between and outside of that that we need to account for. Neurodiversity explains that everyone’s neurology is different and unique, which is not only necessary but beneficial to society.
There are a lot of terms that go along with understanding neurodiversity, and I couldn’t begin to explain them all. What I will do is explain the main terms so that you know enough to start learning and understanding.
- Neurodiversity – The understanding that all people have naturally differing neurology.
- Neurodiversity Movement – The movement supporting the understanding and acceptance of neurodiversity.
- Neurotypical – The “norm” as far as neurology goes, what most people have. This does not mean non-autistic
- Neurodivergent – Neurology outside of the norm or “typical”. This is the opposite of neurotypical. It includes people who are autistic, gifted, or otherwise outside of typical neurology.
- Neurodiverse – This is a group of people who vary in neurology. For example, my children are neurodiverse because they’re all over the spectrum from delayed to gifted to autistic to neurotypical. Therefore, they are neurodiverse.
Neurodiversity and Autism
Autistic people are neurodivergent, but it is certainly not the only way to be neurodivergent. There are many autistic self-advocates that support the neurodiversity movement, so there is a lot of cross over. I get it, it’s a bit confusing. The biggest thing to remember is that autism is a spectrum, from those severely disabled to those who simply see the world differently. This is similar to neurodiversity. There is a large group of people who are neurotypical, and also many people who are neurodivergent.
The main point of all of this? Every person is different. Every single one. We all fall somewhere on the wide neurodiversity spectrum, and we all deserve the same supports and accommodations.