light it up blue

Light It Up Blue for Boys, But Don’t Forget the Girls

Why do we Light It Up Blue? For years, prevalence data in the field of autism held that the condition primarily affects boys, by ratios described as four or five to one generally and up to 10-1 among those without intellectual handicaps.

Indeed, in the early days of identifying autism and Asperger’s Syndrome,  autism was described as “an extreme form of maleness.” Active British psychologist Simon Baron-Cohen theorizes that autism may be caused in part by exposure to high levels of testosterone in the womb. Although no one has definitively identified autism’s roots, there has been a general consensus that boys require a smaller amount of exposure to whatever the cause than girls do to inspire a diagnosis.

Symptoms are more subtle in girls

The result is that in the world of autism, girls often get lost in the shuffle. Diagnostic criteria for autism are disproportionately based on characteristics in boys, potentially revealing a point of bias between diagnosing the two sexes. Not surprisingly, it takes longer to diagnose girls, even compared to boys with the same severity of autism.

Autism symptoms may be subtler in girls than in boys, and girls may be more adept at masking them than boys. Research suggests that girls are able to study people and their behavior, and learn social rules through observation more easily than boys, thereby camouflaging their autism because they mimic socially acceptable interactions.

Researcher Somer Bishop of UCSF describes an encounter with a seemingly well-socialized girl who shook her hand, complimented her outfit and answered her questions. It wasn’t until a second encounter when the conversation was repeated nearly word-for-word, that Dr. Bishop realized the girl had simply practiced a set of neurotypical responses. The result may be that many autistic girls fly under the clinical radar.

Viewing autism through a male prism

Indeed, a 2014 study found “higher functioning” autistic girls tend to have fewer social impairments than boys do—just as neurotypical girls tend to be better socialized than neurotypical boys. Indeed, neurological testing has found that the brains of females with autism tend to look like those of typically developing males of the same age, with reduced activity in regions of the brain normally associated with socialization.

It’s clear now why we Light It Up Blue, and regardless of the complicated history of autism diagnoses, the tradition is worthwhile. However, viewing autism through a male prism has complicated the diagnostic process for girls and resulted in misdiagnosis and underdiagnosis. By definition, no one knows the exact scope of the issue, but it does call into question the long-held wisdom that autistic boys outnumber girls by four or five to one. The reality is that the ratio is likely much closer to 2:1 or an even 1:1, but because girls are often diagnosed with eating disorders or anxiety disorders when the root cause is actually autism, we see diagnostic numbers skew towards boys.

Why is this significant? Among the challenges facing individuals with autism is naivete about people being dishonest with them and difficulty recognizing social cues, often leading women with autism into abusive and dangerous situations. Almost every autistic woman I have interviewed has shared a story of finding herself in a compromised position, often with a traumatic outcome. Misdiagnosing girls with autism means we fail to teach them the social skills they need to navigate the world.

Some in the autism community suggest that clinicians apply sex-specific norms when diagnosing autism, to better define what autism looks like in girls. While we certainly should Light It Up Blue this month, it is pretty clear that much more distaff-focused research needs to be done, and clinicians need to be on the alert for subtle signs of the condition in girls.

Further reading on issues shaping autism services can be found in my book, Autism Matters: Empowering Investors, Providers, and the Autism Community to Advance Autism Services

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!