Seventeen-year-old climate activist Greta Thunberg is currently the most famous person with Asperger’s. Other stars with the condition include Britain’s Got Talent’s Susan Boyle, Pokémon creator Satoshi Tajiri and Academy Award-winning Sir Anthony Hopkins. Thunberg has spoken openly (and proudly) about her diagnosis, going as far as to call it her “superpower”.
Since going public about her diagnosis in 2015, Thunberg has emerged as an inspirational role model for those living with Asperger’s. However, ignorance has led to mockery and criticism of Thunberg and her diagnosis, with some media outlets referring to her as “mentally ill” (Michael Knowles on Fox News), or “deeply disturbed” (Australian News Corp columnist Andrew Bolt), and US President Donald Trump comparing her to the Red and White queens of Alice in Wonderland.
Asperger’s syndrome (syndrome meaning a collection of symptoms to form a disorder) is a developmental disorder characterised by significant deficiencies in social skills and with non-verbal communication. These social deficits include difficulty interpreting non-verbal social cues, lack of empathy to others’ distress, inappropriate emotion responses, inadequate use of eye contact, and not understanding the perspective of others.
Asperger’s syndrome was first described in the 1940s by Hans Asperger, who labelled it “autistic psychopathy” in 1944. It is believed he himself suffered from the condition. He observed autism-like behaviours (social and communication skills deficits) in boys who had otherwise normal intelligence and language development. Several professionals argued that Asperger’s was simply a milder form of autism and thus considered it high-functioning autism instead.
In 1994, the American Psychiatric Association included Asperger’s syndrome in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) as a separate disorder from autism. However, in 2013 the DSM-V reclassified Asperger’s to fall within the diagnosis of Autism Spectrum Disorder (ASD).
ASD covers serious developmental disorders that affect an individual’s ability to communicate and interact with others. ASD is an umbrella diagnosis and includes conditions such as autism and Asperger’s syndrome.
According to Claire Battiston, a clinical psychologist at Palm Tree Clinic in Cape Town, Asperger’s “is a diagnosis in itself that we [clinicians] do not use any more”. Rather, an individual presenting with Asperger’s-like symptoms would be diagnosed as either level one, two, or three on the autism spectrum.
“Based on the diagnostic criteria, Asperger’s would probably be a level one [on the spectrum]… level one has to do with more high-functioning autism,” Battiston said. According to the DSM-V, the lower the level, the less support an individual may need. There are no specific guidelines regarding the exact type of support (from a loved one or professional) an individual may need. Someone with level one autism may not require much support. In contrast, a level two will require moderate support and a level three requires a substantial amount of support
What distinguishes Asperger’s from “classic” autism is its less severe symptoms and the absence of language delays. Individuals with autism live with social skills deficiencies and have no problem with verbal communication. Typically, individuals with Asperger’s show above average or superior verbal IQ and have intelligence and language within the normal range of functioning, which contrasts with individuals on the higher end of the spectrum.
Thunberg has also been diagnosed with obsessive-compulsive disorder (an anxiety disorder characterised by excessive, uncontrollable thoughts that lead to repetitive behaviours), attention deficit hyperactivity disorder (which affects attention, self-control, and the ability to sit still), and selective mutism (a severe anxiety disorder where a person is unable to speak in certain social situations).
The comorbidity – the presence of additional conditions co-occurring with the primary condition – of Asperger’s is high. Battiston says individuals with Asperger’s have a 70% chance of having one other psychiatric disorder, and a 40% chance of having two or more disorders. Like Thunberg.
According to the World Health Organisation (WHO), scientific evidence suggests that environmental and genetic factors may play a role in the development of ASD. However, there is no known single cause of ASD. What researchers do know is that it is associated with abnormalities in brain structure and function. Importantly, there is consistent and conclusive data that shows there is no causal link between vaccines and autism.
Children and adults with Asperger’s may be lacking in social skills, but the condition does come with a unique “gift”: they are better at differentiating between intentional and unintentional actions than individuals without the disorder. Thunberg says, “It [Asperger’s] also makes me see things from outside the box. I don’t easily fall for lies, I can see through things.”
Asperger’s is often associated with obsessional behaviour and out-of-the-box thinking, which explains why Greta Thunberg partially credits her condition for her passion and strong activist nature.
“I see the world a bit different, from another perspective. It’s very common that people on the autism spectrum have a special interest. I can do the same thing for hours. It makes me different, and being different is a gift, I would say.”
However, living with Asperger’s is not always easy. Being different sometimes comes with a price, for those living with Asberger’s and their loved ones. The numbers show that it is “five times more prevalent in males than in females”.
Olivia (not her real name), is raising a child with Asperger’s in South Africa. She describes the many struggles her family has faced over the years. “Autism is not a gift… it is not glamorous and shouldn’t be glorified by the media”.
Her 12 year-old son, Jonathan (not his real name), was diagnosed with Asperger’s when he was nine. Olivia states that although Jonathan is highly intelligent, especially when it comes to computers and maths, he lacks social skills and is prone to severe tantrums.
Olivia says public school was disastrous for Jonathan from the beginning. On the subject of special needs education in South Africa, psychologist Claire Battiston states: “In this country, we have a lack of appropriate schools for children with any kind of special need. It’s difficult for [public school] teachers to pay adequate attention to children with Asperger’s. We do have [public] schooling that does cater for severe ASD, though it’s few and far between”.
Olivia has had teachers crying and screaming at her out of frustration. Her son is now in a private special needs school that only has seven kids in a class.
Jonathan struggles to understand any kind of social interaction, ranging from sarcasm and irony to humour. He is also unable to read body language and someone’s state of mind.
“That part of his brain doesn’t work. He doesn’t understand why he should greet people, say goodbye, be kind, talk in a friendly voice, [and] be considerate” says Olivia.
Jonathan also has sensory sensitivities, which often happens with Asperger’s.
“Certain computer games make him aggressive, like Fortnite, because of the over-visual stimulation. Too much social stimulation or people drives him crazy,” says Olivia.
Both Olivia and Jonathan have been subject to social ridicule, with some parents forbidding their children from playing with Jonathan.
“I have had other mothers scream at me, saying he is possessed, weird, ill, or strange. People don’t understand, as our son looks normal, but because the social part of his brain does not work at all, he can say the most horrible things and doesn’t understand why people are then upset with him.”
When Jonathan is taunted and teased about his condition, he resorts to violence.
“He will hurt them. He doesn’t understand that he can’t physically take out his anger on other kids,” Olivia says.
Addressing the issue of violence, Battiston says that, “These children have difficulties with emotion regulation. For them, emotions are very overwhelming and they cannot communicate in the same way that you and I can. And so they tend to act out in aggressive ways as a way of communicating the internal struggle that they are experiencing.”
Parents and caregivers need support as well.
“Often, we will refer [parents] for their own psychological and emotional support. Part of receiving this diagnosis involves a grieving process because there is a loss,” says Battiston.
“As a parent, you’ll have hopes and dreams when you bring a child into the world; it is very difficult to receive a diagnosis like autism, because it means you need to acknowledge that whatever it was that you were hoping and dreaming for may realistically never actually be achievable.”
Olivia has hopes and dreams for her son, but fears that he may never be able to hold down a job. With social and personal relationships being a major obstacle with Asperger’s, Olivia says that “all success comes from honest relationships with human beings and my wonderful son does not see the value in another human being, he sees the value of things. As much as I can dream, I don’t think he will ever be able to have a normal marriage.”
Although some, like Thunberg, may feel their diagnosis is a gift or a “superpower”, the reality is that for others this is not the case. Olivia and her family struggle with Jonathan’s condition on a daily basis.
“I often feel like a total failure as a mother. I can’t heal him or make him feel better. It has caused a lot of tension in our marriage.”
Offering advice to other parents who have a child with Asperger’s, Olivia says parents should not blame themselves.
“Don’t blame your husband or wife either, they really are doing their best.” Olivia also suggests trying to make time for yourself to do things you enjoy and to “nurture yourself with outside hobbies if you can”.
According to the WHO, approximately one in every 60 children develop autism. However, a study is yet to be done to determine the total number of ASD cases in South Africa, or anywhere else in sub-Saharan Africa. As a country, we still have a long way to go in terms of being able to accurately represent the population.
Language and cultural barriers also lower the rate of diagnosis, and with a shortage of trained professionals, only some South Africans with ASD will actually be diagnosed.
“We need to think about what is culturally appropriate, with the DSM-V being a Western diagnostic tool,” says Battiston.
Aside from cultural differences, Battiston suggests that another reason behind inaccurate and unreliable statistics is because not everyone has access to healthcare.
“If we talk about population groups, then, in typical Western societies, white middle-class families might come for treatment [more often] because they can afford it.”
Parents should ask their family doctor for a referral to a developmental paediatrician if they suspect their child may have autism. You can visit Autism Western Cape to find out more about the warning signs of autism in early childhood. Although affordable mental health care in South Africa is limited, there are some support and awareness groups families can reach out to for guidance.
Autism South Africa and Autism Western Cape are national and regional support groups which provide lists of service providers in your area, and offer events for people on the ASD spectrum and training for people who wish to get more involved.
Greta Thunberg has opened the door for people to have open and frank discussions about mental health disorders, particularly ASD. Greater awareness of Asperger’s syndrome or autism is needed in society at large if one in 60 children have the condition. Especially as, unlike Thunberg, Boyle, Satoshi and Hopkins, not everyone with ASD is high-functioning. All can lead better quality lives, however, if there is more awareness and support available to them and their families. DM
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