autism

Disappearing Into Normality: Understanding Autism on Its Own Terms

The popular paradigm to describe individuals on the autism spectrum is linear: we conceive of individuals as mildly, moderately, or severely impacted by autism. These categorizations are also used diagnostically to determine how a person’s life and functioning is affected by their autism. Put another way, autistic individuals are referred to as needing lower-support or higher-support, often depicting how others perceive their functioning and adaptability. 

We measure the place individuals occupy on the continuum primarily by their ability to communicate, socialize and act “normal.” Interestingly, we do not speak about other populations or groups of people this way. We recognize cultural differences, language differences, and expect that people from different parts of the world will behave differently. But when it comes to individuals with disabilities we differentiate on a spectrum of “normal”.

Of course, there is nothing inherently better about “normal.” It’s simply the norm—the way most of us have agreed to act. “Non-normal” socialization is not necessarily worse.

The Speciousness of Normal

So, which of these individuals with autism is more “normal” as we define it: the highly verbal, articulate person with a college degree who becomes incapacitated when overwhelmed by sensory inputs and struggles with anxiety and/or depression, or the person with communication challenges limited to simpler, possibly repetitive tasks who accomplishes them every day and enjoys a social life, explores their passions, and lives with a degree of independence? 

The first person appears “normal” to neurotypical people most of the time but encounters significant life challenges, many of which are not visible. This is why “normal,” as a qualifier, doesn’t carry much water.

The topic of normality and autism came up in my recent conversation with Dr. Sue Fletcher-Watson, a Chancellor’s Fellow at the University of Edinburgh’s Centre for Clinical Brain Sciences. She has conducted significant research on intelligence and socialization of individuals on the autism spectrum.

Dr. Fletcher-Watson believes that the great untapped reservoir of information about the struggles of autistic individuals comes from those struggling with the condition themselves. 

“I think we really need to systematically explore how [the recommendations of] able, articulate, autistic adults can be translated into good practice for young children, people with learning disabilities, people with communication challenges, and so on,” she said. 

“We’re looking at developing peer support models which would include matching newly- diagnosed autistic adults with people who have had a diagnosis for a while, and are very established in the community, but also maybe pairing parents of autistic children with an autistic adult, to get their insights and their perspective.”

Segregate or Integrate?

There is an ongoing discussion in the disability community and the legislature about the relative merits of organizing people with disabilities into their own communities. As research has demonstrated, and I have documented here, people with autism often report that they socialize more successfully with each other than with neurotypical people (and vice versa). Living within their own communities is often preferred and provides individuals with autism the freedom to organize their lives around their own social norms.

This would argue for creating communities of people with autism.

But many are suspect of creating living environments that could mimic institutions, weary of the way we institutionalized people with psychiatric conditions in the U.S. in the 1960s and 70s to disastrous effect. Today, federal law requires that many residential facilities for individuals with disabilities must be integrated with a certain number of non-disabled people.

Many caregivers and people with autism chafe at this law. 

It’s a conundrum, Dr. Fletcher-Watson and I agree. After all, people with commonalities of all types organize themselves into segregated communities, whether it’s senior living communities for older people or summer camps for children with cancer.

What marks these communities as special are the commonalities in life experiences the members share, and the social norms inside them, which could be beneficial to people with autism who are naturally governed by norms not shared by the rest of society.

Dr. Fletcher-Watson describes the conundrum this way: “On the one hand, what our data seems to be saying is that we should provide opportunities for autistic people to be together. I’ve met autistic adults who’ve never met another autistic person, and that’s heartbreaking. So, that’s really important, to provide those spaces. But the risk is that you can also create a ghetto.”

The solution might be to allow people on the spectrum to choose their own living arrangements, and if the results are organic, successful communities of people with autism, then we should be grateful for a concept that improves their lives. At the same time, individuals with autism who prefer to mainstream their living situations would have that ability, offering everyone the opportunity to choose the lifestyle that best suits them.

 

For further reading like this blog, check out a copy of my book, Autism Matters.

intelligence

Measure What Matters: Redefining Neurotypical Intelligence Standards for Autistic Individuals

I’ve written previously about how we misunderstand the intelligence of people on the autism spectrum. We evaluate their intelligence with tests and observations that measure a narrow slice of the intelligence continuum and then judge them by their ability to socialize with us.

Neurotypical vs. Autistic Culture
Neurotypical people—a term for individuals without autism coined by people with autism—living in a neurotypical world, consider our present culture and socialization methods to be “correct,” and never pause to think how woefully we socialize with autistic people based on those standards. For example, we may become flustered while conversing with an autistic person when they fail to make eye contact with us. They might just as easily perceive us as poorly socialized when we insist on staring at them during a conversation.

Neither group is wrong; we’re just different. In order to better help autistic people navigate the neurotypical world, perhaps we ought to re-shape parts of that world to conform to their differences. This is precisely what we’re doing when we build ramps for people in wheelchairs or post signs in other languages for foreign visitors.

I’ve spoken about this at length with Dr. Sue Fletcher-Watson, a Chancellor’s Fellow at the University of Edinburgh’s Centre for Clinical Brain Sciences. She has done significant research on intelligence and socialization of individuals on the autism spectrum. Her conclusions reverberate with me and my experiences in the field.

Some Simple Adjustments
An autistic friend visited Dr. Fletcher-Watson for dinner and asked in advance what time she should leave. She knew that she would not be able to read the subtle cues neurotypical people understand as indicating it is time to go. Armed in advance with a time to leave, her departure avoided the awkwardness that might otherwise have ensued.

Dr. Fletcher-Watson has proposed involving autistic people in designing environments for others like them. She is also developing peer support models that match newly-diagnosed autistic adults with those who have learned how to accommodate their autism to the neurotypical world and pairing parents of autistic children with autistic adults.

Dr. Fletcher-Watson described for me how that might work: “Just imagine having an autistic guy come ’round and look in your house and say, ‘The hum from your fridge is very loud for me, so maybe you can find a way to make that quieter.’ Or, ‘These lights are very harsh.’ Or, you know, ‘This fabric feels uncomfortable.’ Articulating all of those things that maybe a child would not be able to articulate.”

Let’s Measure What Matters
Greater dedication to the real-world needs of autistic people might lead us to a different set of metrics. Maybe reading and writing aren’t nearly as important for some autistic people’s ability to function in the world as other skills and areas of learning. For example, a young man I know runs a food delivery business. He takes orders from various companies, reliably gets the orders right and makes correct change, and generally possesses the skills necessary to complete the job.

As a boy, he was removed from public school because of his behavioral issues. When his parents brought him home, they eliminated many of the sensory inputs in his home environment and were able to foster his learning and independence through different therapeutic approaches. Now, with a little support and mentoring, he has a job, a girlfriend, a roommate, and a self-determined life. Maybe he can’t check all the right the boxes on an assessment test of skills that measure standard conceptions of intelligence, but he is functioning well in the neurotypical world.

A more strategic approach to analyzing how we measure success for individuals with autism is indicated, to replace the rudimentary box-checking now in place. It must take into account real-world skills that accrue to the long-term benefit of those affected. Accomplishing this would be one small but significant step forward in their care and education.

 

You can find further reading on this and other subjects in autism services in my book, Autism Matters.

autistic individuals

The Social Intelligence of Autistic Individuals, Part 1

If a perfectly intelligent American were to find themselves catapulted into a foreign world with its own traditions, customs, culture and language, all totally unfamiliar to the person transported there, it would not be surprising for the people of this world to consider their visitor unintelligent, viewing intellect through the narrow lens of their own experiences.

Not only would our American visitor be unable to communicate verbally, but he or she also would not be particularly adept socially, unfamiliar as they would be with the cultural norms of this utterly alien place.

There is a certain analogy here with individuals along the autism spectrum. In my recent interview with Dr. Sue Fletcher-Watson, a developmental psychologist at the University of Edinburgh, she noted we often evaluate intelligence via a test that measures only very specific functions that don’t play to the strengths of those on the spectrum. But how would we view people with autism differently if we employed autistic-centric criteria?

Fletcher-Watson and her team of researchers conducted experiments using a familiar tool – the game of telephone, where a story is passed orally from one person to another down a chain of people until it hardly resembles the original story. This is called a diffusion chain and the rate of degradation in the story is fairly predictable.

The researchers conducted this experiment with a group of neurotypical subjects and with a group of autistic subjects and the rate of message degradation was the same for the two groups. But something very different occurred when the neurotypical and autistic individuals were mixed. The story degraded at a much faster rate.

For autistic individuals, “the issue is not that they don’t have social skills. It’s more that there’s a mismatch between their style of sociality, and the style of the kind of neurotypical majority,” Fletcher-Watson told me.

Another issue that those with autism face is the inadequacy of average. A neurotypical person with average intelligence is simply viewed as average, just an ordinary person with friends and loved ones, weaknesses and strengths.

Because people with autism are often stigmatized as anti-social savants, those lacking the savant element are simply stigmatized as anti-social, when in fact, they have much more in common with ordinary people of average intelligence.

In fact, high-functioning, highly-verbal autistic individuals are in some ways the most debilitated. Autistic individuals who can navigate the intellectual world but come unglued in overwhelming sensory environments might score high on an IQ test but would have difficulty navigating life without support. Indeed, highly verbal adults with autism have a suicide rate eight times the average for neuro-typical adults.

When we take an asset-based approach and focus on the strengths of autistic people and their ability to function on their terms, we give them a much greater opportunity to succeed.

“I know a man who doesn’t speak. He’s in his 30s. He doesn’t read or write, but he owns his own sandwich-making business,” Fletcher-Watson told me. “Everyone buys those sandwiches from him for lunch, and he makes a good living, and obviously he has someone to help him with the paperwork.”

“But, you know… he passes his hygiene inspections because he’s very good at following rules.”

 

You can read further on this topic and more in my book, Autism MattersAnd make sure to connect with Dr. Sue Fletcher-Watson for more of her expert insights and updates on her work!