The seminar begins with a clip from Carly Fleischmann's interview with Channing Tatum. Carly is a 21 year old woman with autism. She is nonverbal and speaks with the help of text-to-speech software. Being nonverbal tends to put people in the 'severe autism spectrum disorder' box, but Carly proves that the idea of ASD can be hugely different from the reality.
Dr Paul Trani, a paediatrician, explains that what we are seeing in this video is one of the most obvious gender differences in ASD. When autism was first described, by Leo Kanner in 1943, 8 of the 11 children examined were male and, as such, our system of diagnosis is heavily biased toward a male expression of ASD. We expect all people with a certain severity of ASD to avoid social interactions, to be overwhelmed by strangers, and to shy away from these situations wherever possible, but Carly Fleischmann is doing the opposite. Why?
Autism is a spectrum, but that doesn't mean it's a flat line. Dr Trani asks us to imagine it as an umbrella. The handle is autism, but from that starting point branches a number of possibilities. Each spoke on the umbrella could signify a different symptom, or different ways that the brain processes information. Every person with autism will find themselves at different points on each of those spokes, with their experience of that symptom being more or less severe than other symptoms. Despite the obvious individual differences for people with ASD Dr Trani believes that there are general male and female trends in ASD symptoms, and we are still diagnosing girls based on what we would expect to see from boys.
Fraternal twin studies have demonstrated that in order to receive a diagnosis of ASD girls need to be affected more severely than boys. The ritual and obsession which is a normal feature of ASD is masked by a focus on socialising. “Who knows a little girl who is obsessed with One Direction?” Dr Trani asked the crowd, “or a little girl who obsessively draws ponies on her books?” these are both potential signs of ASD, but are usually overlooked during observation because they adhere to social norms for little girls. Dr Trani, however, explains that the difference here is that a child with ASD is usually mimicking other children's behaviour in order to be accepted. “They want to be social,” he says, “but they're not sure how.”
For those diagnosed late in life this difference becomes more obvious. Males diagnosed after the age of 30 showed highly developed verbal skills, tending to talk their way through issues, while females showed very advanced executive function and actively thought through the social cues which neurotypical people would process automatically. Our diagnostic biases ignore these girls because they can hide their difficulties behind that social desire, and if we continue to look at ASD as a certain set of symptoms of specific severities, more children will be left to navigate the neurotypical landscape without the help they need.
Frida O'Neill, a speech language therapist, followed-up Dr Trani's talk by emphasising the importance of social adaptation. In her daily work she engages with children, as well as their parents and teachers, who are struggling with language and learning. Around 40% of her caseload are children with ASD. In cases like these, people need to understand that it's not a case of fixing the child to fit into everyone else's world, it is about finding a way to make those worlds meet.
She discussed the case of a young boy who was obsessed with the French revolution, and would disrupt his school class at every chance in order to move the topic toward the French revolution. This led to frustration on the part of his classmates, his teacher, and himself. No one was getting what they needed out of the situation. The solution wasn't to bar him from mentioning the French Revolution, it wasn't to punish him, or isolate him, or try to enforce social rules he didn't understand. They made a deal with him: 50 minutes of focused work would give him 10 minutes to talk about the French Revolution. While the rest of the children were packing up at the end of class this little boy could take his time and really dig in to a part of this topic he loved so much. It worked! He was focused, he didn't disrupt the class anymore, and he worked diligently up until his 10 minutes arrived.
The reality of living with ASD is both hugely different and very much the same as living without it. We don't force left-handed children to use their right-hand, we don't punish colour-blind children for not knowing the difference between certain colours, and we need to maintain that adaptability for the differences inherent in ASD. As far as Frida O'Neill is concerned, if we work with these children we will have more success in helping them than if we work to diminish their differences.
As clinicians Dr Trani and Ms O'Neill have an important role in shaping how people with ASD are treated, and in guiding how their own professions need to evolve for these patients. In contrast, the focus of research into ASD is to try to answer the fundamental question of 'Why'. Why does this happen in some cases and not in others?
Professor Ian McLennan has a historical interest in motor neuron disease. This class of conditions demonstrated time and again how tiny failures in biological processes can have fatal consequences. In motor neuron diseases the cells which activate muscles fail, eventually leaving the sufferer paralysed and leading to their death. But the damage which causes cell death can take years to accumulate before it becomes a problem. He asks us to keep in mind that the issues with many disorders are likely the consequence of small biological effects which build up over time to have devastating effects on the person as a whole. “When one thing is different, we like to think of the whole as being different, but that is simply not the case,” he says. The reality is that developmental disorders like ASD are probably the result of tiny differences.
What does Professor McLennan believe may influence ASD? The speed of brain development is a candidate. For the period from just prior to birth, through to just after, our brains grow rapidly. They make a huge number of new connections, and set up circuits which will stay with us for the rest of our lives. The faster this process happens, however, the less precise this development is and the less time these cells have to fix any mistakes they make.
On average the brain of a child with autism is larger than that of a child without autism. During puberty the pruning process which strips away unnecessary connections is also faster. This leads some researchers to believe that the development of the brain of someone with ASD has involved too-rapid changes in connectivity and so connections are less precisely made than they would otherwise be. It is a broad problem, with any number of fundamental causes, and any number of varied impacts. It leaves room for a huge amount of variety in how ASD may present for each person.
It is easy to see a person with ASD and think of them as separate from yourself, as somehow fundamentally different. In watching Channing Tatum laugh with Carly Fleischmann, in hearing about that little boy who loved the French Revolution, it is harder to maintain that separation. There are differences, of course, but there are differences between all people. What we know now is that ASD means something different for each person who is diagnosed with it; a different set a symptoms, a different way of dealing with the world. In her work Frida O'Neill assesses each child and asks herself: “How do I help this person?” In their own ways, with their differing skills in their various fields, this is what each of our speakers was asking. As long as the conversation remains open, an increased understanding of ASD that will be of benefit to all seems inevitable.
We thank Dr Paul Trani, Frida O'Neill, and Professor Ian McLennan for providing further insight into ASD from both clinical and research perspectives, and for maintaining such an important conversation.
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