I deal with people all the time who, once they find out that I am autistic, they decide I am not worthy of being heard. I had such an encounter with my doctor. Recently during an appointment. Once he learned that I have autism, basically he didn’t listen to me at all during the appointment and it was obvious. I later learned that the person in the room was his boss and watched the whole thing without saying a word. I brought the matter up to the clinic and they defended him. I’m almost positive that he exhibited bias towards me because I have autism. How do I respond to people who are clearly not paying me much attention and not listening to me? How do I advocate for myself?
Here is an article I found earlier this week in 'newscientist.'
This is a part of the article.
The remainder is to be found here.
It is behind a paywall.
For years, we've thought of autism as lying on a spectrum, but emerging evidence suggests that it comes in several distinct types. The implications for how we support autistic people could be profound
www.newscientist.com
On the spectrum.” These three words have become synonymous with autism, yet behind them lies a common misunderstanding. The idea of “the spectrum” suggests that all autistic people share similar experiences and behave in similar ways – only to a greater or lesser extent. The reality couldn’t be further from the truth.
Some autistic people may not speak at all; others are hyperverbal and extremely fluent. Some are highly sensitive to bright lights and noise, or the opposite. And some have rigid routines and make repetitive movements like hand-flapping, while others are more flexible but spend a lot of time on “special interests” – anything from Tudor history to Rubik’s cubes
Autism’s incredible diversity is something to celebrate. However, it has long presented an immense challenge to researchers trying to understand this seeming jumble of traits. Strides are now being made, as several recent studies have identified apparent groups within the catch-all term of
autism that are also underpinned by patterns of genes and brain activity.
Researchers are exploring if and how these subtypes can be leveraged to help autistic people get better, more personalised support, and gain a great understanding of themselves. “There is now a more concrete basis for understanding where their experiences are coming from,” says neuroscientist
Conor Liston at Weill Cornell Medicine in New York.
Yet this isn’t the first time that researchers have tried to separate autism into different guises and some advocates are wary of how these subtypes will play out in society. “You might feel like [subtyping] is value-neutral, but for someone else, it really isn’t,” says
Amy Pearson, a psychologist at Durham University, UK
Autism is
a developmental condition that affects
how people interact with others and the world around them. Broadly speaking, this means that autistic people often have difficulties with socialising, communicating and sensory sensitivity, and they may have restricted behaviours and interests. In numerous countries, autism is legally classed as a disability, which can help autistic people access support. However, many autistic people argue that it isn’t a disability, but instead a form of neurodivergence – and others are happy with both designations.
A growing awareness of neurodiversity has led to increased rates of autism diagnosis, with estimates now putting the
number of diagnoses in the US at 1 in every 32 people. This includes many women and girls, who are
often diagnosed later in life, as autism tends to present differently in them, especially when it comes to social motivations and behaviour. Traditionally, this hasn’t been accounted for.
In some ways, the idea of an autism spectrum,
first coined by psychologists in 1979, fits this encompassing approach to diagnosis – and many autistic people still find the concept helpful. At the same time, the growing need to describe large variations in behaviour and experience has revealed the spectrum’s limitations.
Paul, a project manager from Maryland in his early 50s, is currently going through this diagnostic process. He struggles with interpersonal skills, such as “understanding what other people are feeling” if they don’t express themselves literally, he says. “It affects me at work, but it’s also helped me at work, because I ask a lot of questions so that I can understand something, and until I understand it, I don’t let it go.” Because of well-worn stereotypes about the spectrum and what autism is like, it never occurred to Paul that he might be autistic until his therapist suggested it. “I don’t think anybody fits all of this stuff,” he says.
Liston says autism is a large catch-all category that lumps together “people with probably many different kinds of molecular, cellular and brain circuit mechanisms”. In order to get a better handle on the underlying biology, we need to think about more precise ways of identifying it and
embrace the condition’s heterogeneity, he says. This, in turn, could lead to earlier diagnosis and personalised support for autistic people. “Ultimately, that’s the goal,” says
Adriana Di Martino at the Child Mind Institute in New York.
So, in recent years, researchers have
tried to demarcate autism subtypes by identifying clusters of people with similar sets of traits and symptoms, which may also have shared biological mechanisms. One early attempt was published in 2020 by developmental psychologist
Mirko Uljarević at Stanford University in California and his colleagues. They asked the parents of 164 autistic children to rate their children’s social abilities and found five clusters that had distinct patterns of strengths and weaknesses across different social traits that didn’t map onto a simple line from more to less severe.
However, it became clear that this and similar studies could improve on their methods. Some studies
relied heavily on parents’ reports about their autistic children, limiting their reliability. Moreover, it wasn’t clear in some research
if these were true clusters or if the basic idea of a spectrum fit the data better. A 2020 review led by Di Martino concluded that there are probably “at least 2 to 4” distinct autism neurosubtypes, but that the studies were too small and relied on qualitative measures of autistic traits.
Since then, researchers like Di Martino have refined their methods, using larger sample sizes and identifying more granular behaviours and traits. They have also turned to
brain imaging and
genetic analysis to help match up behaviour with biological mechanisms. “We believe that is a more effective way to understand and characterise the features that are relevant for autism,” says Di Martino.
What if the idea of the autism spectrum is completely wrong?
For years, we've thought of autism as lying on a spectrum, but emerging evidence suggests that it comes in several distinct types. The implications for how we support autistic people could be profound
“On the spectrum.” These three words have become synonymous with autism, yet behind them lies a common misunderstanding. The idea of “the spectrum” suggests that all autistic people share similar experiences and behave in similar ways – only to a greater or lesser extent. The reality couldn’t be further from the truth.
Some autistic people may not speak at all; others are hyperverbal and extremely fluent. Some are highly sensitive to bright lights and noise, or the opposite.
Autism’s incredible diversity is something to celebrate. However, it has long presented an immense challenge to researchers trying to understand this seeming jumble of traits. Strides are now being made, as several recent studies have identified apparent groups within the catch-all term of
autism that are also underpinned by patterns of genes and brain activity.
Researchers are exploring if and how these subtypes can be leveraged to help autistic people get better, more personalised support, and gain a great understanding of themselves. “There is now a more concrete basis for understanding where their experiences are coming from,” says neuroscientist
Conor Liston at Weill Cornell Medicine in New York.
Yet this isn’t the first time that researchers have tried to separate autism into different guises and some advocates are wary of how these subtypes will play out in society. “You might feel like [subtyping] is value-neutral, but for someone else, it really isn’t,” says
Amy Pearson, a psychologist at Durham University, UK.
Neurodiversity
Autism is
a developmental condition that affects
how people interact with others and the world around them. Broadly speaking, this means that autistic people often have difficulties with socialising, communicating and sensory sensitivity, and they may have restricted behaviours and interests. In numerous countries, autism is legally classed as a disability, which can help autistic people access support. However, many autistic people argue that it isn’t a disability, but instead a form of neurodivergence – and others are happy with both designations.
A growing awareness of neurodiversity has led to increased rates of autism diagnosis, with estimates now putting the
number of diagnoses in the US at 1 in every 32 people. This includes many women and girls, who are
often diagnosed later in life, as autism tends to present differently in them, especially when it comes to social motivations and behaviour. Traditionally, this hasn’t been accounted for.
Autistic people may have different social communication styles and preferences to non-autistic people
Paul, a project manager from Maryland in his early 50s, is currently going through this diagnostic process. He struggles with interpersonal skills, such as “understanding what other people are feeling” if they don’t express themselves literally, he says. “It affects me at work, but it’s also helped me at work, because I ask a lot of questions so that I can understand something, and until I understand it, I don’t let it go.” Because of well-worn stereotypes about the spectrum and what autism is like, it never occurred to Paul that he might be autistic until his therapist suggested it. “I don’t think anybody fits all of this stuff,” he says.
Liston says autism is a large catch-all category that lumps together “people with probably many different kinds of molecular, cellular and brain circuit mechanisms”. In order to get a better handle on the underlying biology, we need to think about more precise ways of identifying it and
embrace the condition’s heterogeneity, he says. This, in turn, could lead to earlier diagnosis and personalised support for autistic people. “Ultimately, that’s the goal,” says
Adriana Di Martino at the Child Mind Institute in New York.
Searching for autism subtypes
So, in recent years, researchers have
tried to demarcate autism subtypes by identifying clusters of people with similar sets of traits and symptoms, which may also have shared biological mechanisms. One early attempt was published in 2020 by developmental psychologist
Mirko Uljarević at Stanford University in California and his colleagues. They asked the parents of 164 autistic children to rate their children’s social abilities and found five clusters that had distinct patterns of strengths and weaknesses across different social traits that didn’t map onto a simple line from more to less severe.
However, it became clear that this and similar studies could improve on their methods. Some studies
relied heavily on parents’ reports about their autistic children, limiting their reliability. Moreover, it wasn’t clear in some research
if these were true clusters or if the basic idea of a spectrum fit the data better. A 2020 review led by Di Martino concluded that there are probably “at least 2 to 4” distinct autism neurosubtypes, but that the studies were too small and relied on qualitative measures of autistic traits.
Since then, researchers like Di Martino have refined their methods, using larger sample sizes and identifying more granular behaviours and traits. They have also turned to
brain imaging and
genetic analysis to help match up behaviour with biological mechanisms.
Bright lights and loud noises may overwhelm some autistic people because of how their brains process sensory information
Now, what look to be genuine subtypes are appearing out of the fog. In a 2023 study, Liston and his colleagues analysed several existing datasets that comprised 432 autistic people whose brain activity had been measured and whose specific autistic traits had been identified. They reliably identified
three distinct dimensions along which brain activity and behaviour were correlated in this group compared with a control group of neurotypical people – meaning people whose brains develop and work like most other people’s do.
One dimension related to intellectual functioning, especially verbal intelligence. The second was about social behaviour and relationships with other people, called “social affect”, and the third was linked to restricted interests and repetitive behaviours. Then, the team looked at how the autistic group scored on these three dimensions and found that
their traits cluster into four subgroups.
Those in subgroup one had high verbal intelligence and strong connectivity in their language-processing centres, while it was the opposite for those in subgroup two. Likewise, while those in subgroup three had poor social affect but fewer restricted and repetitive behaviours, these traits were flipped in those in subgroup four. “Having identified those four subtypes, we can begin to ask questions about [why] they’re different,” says Liston.
Surprisingly, the team found that atypical connections in a given brain system didn’t lead to traits related to that system. “A lot of work to date has tended to assume that what is causing your symptoms, or what explains the severity of your symptoms, is also somehow abnormal,” he says. “And that is, in fact, not the case.” Some of the neurological changes may reflect one part of the brain compensating for problems elsewhere, says Liston. This detail would never show up in a study that lumped all autistic people together, he says, whereas the subgroup analysis revealed the underlying biology.
Genetic roots
Throwing genes into the mix offers further insights. Gene variants that are associated with autism often play a role in the connections that form between neurons, known as synapses. Liston’s team found that brain regions with altered circuitry in autistic people, compared with neurotypical people, also showed characteristic changes in gene expression. This implies that it should one day be possible to join the dots from genes to brain circuitry to behaviour, says Liston.
Another
landmark subtyping study was published in July last year by geneticist
Natalie Sauerwald at the Flatiron Institute in New York and her colleagues. They used a dataset from
Simons Powering Autism Research, a research study that is led by the autistic community, which included 5392 autistic people – an order of magnitude more than previous studies. For each individual, the researchers examined 239 traits spanning seven categories.
May God bless you in your life.
