How to be openly autistic

by Eric Garcia / 17 November 2020
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Science & Society
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How to be openly autistic

Eric Garcia

The Expert:

How to be openly autistic

Eric Garcia

Jessica Benham was born a few months after the passage of both the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA) in 1990. It’s something that Benham, who is autistic, highlighted when I spoke to her on 5 November, two days after she won a seat in Pennsylvania’s state legislature, representing the Pittsburgh area. Those laws paved the way for her and other autistic politicians taking office.

In addition to Benham, two other state legislators — Democrat Yuh-Line Niou of New York and Republican Briscoe Cain of Texas — have said they are autistic, but Cain didn’t reveal his diagnosis until after he was elected. He did so in a speech on the Texas House floor last year, when he proposed a resolution to make April Autism Awareness Month. Niou first spoke about her autism in an interview with a website run by college students when she ran in 2016, and elaborated on it after she was elected.

By contrast, Benham, a Democrat, was openly autistic when she announced her run for office last year, and she made it a central part of her persona as a candidate.

Benham’s ascent to the Pennsylvania State Legislature in Harrisburg matters because it signifies that autistic people are coming into their own as political players. Her election and public presence also challenge perceptions of what autism looks like: She is finishing her dissertation for her Ph.D. at the University of Pittsburgh; she co-founded the Pittsburgh Center for Autistic Advocacy; she has been married for seven years and owns her own home.

“For a long time now, autistic people have been really effective policy advocates, and certainly some folks have held elected office who have not been open about their diagnosis,” Benham says. “But having somebody who is loud and proud, as it were, means that people can’t ignore the way their policies impact people like me.”

Her victory is important for autistic people and their loved ones because it means that she and other autistic politicians can advocate for policy and research on the priorities that matter most to them, including quality-of-life issues. This marks a shift from when parents, caregivers and researchers were the main advocates and policymakers speaking about autism. Although parents can be valuable allies in fighting for their loved ones, their advocacy and representation can only go so far; they don’t live autistic lives, and at times their interests might even contradict the desires of autistic people themselves.

A shift in advocacy:

For years, many people misunderstood autism as a narrow diagnosis. It was only in the 1980s that autism entered the third edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) as a ‘pervasive developmental disorder’ separate from schizophrenia. And it wasn’t until the 1990s, when Benham was a child, that autism was first considered a spectrum condition, encompassing different levels of support needs, in the DSM-IV.

With these shifts, public policy moved toward accommodating autistic people, delivering benefits for those born after the ADA and IDEA. But those laws still are not nearly enough.

Benham says she aims “to fight for those things inspired by my own life experiences” and would like to be on the human services committee in the Pennsylvania legislature. “Off-handedly, [a colleague] said, ‘Oh, you could really own that space,’” she says. “And I said, ‘It’s about time someone with a developmental disability owns that space.’”

Benham didn’t run to make history but to make a difference, she says, and she plans to work on disability-specific topics such as education funding, how the care system is run and how Medicaid waivers work to help autistic and disabled people receive services at home.

She also knows how important her victory is for the LGBTQ+ community. She is the first bisexual candidate elected to Pennsylvania’s legislature. Almost 70 percent of autistic people identify as members of the LGBTQ+ community, according to one 2018 study, compared with only 30.3 percent of non-autistic people 1 .

Many autistic LGBTQ+ people say they are ignored or, because they are autistic, frequently face questions about whether they are actually LGBTQ+. One study published this past February found that LGBTQ+ respondents have much higher rates of mental illness, poor physical health and smoking compared with their straight, cisgender counterparts on the spectrum 2 . LGBTQ+ participants also have higher rates of not seeing a doctor or specialist and not obtaining prescriptions. Most alarmingly, 35.7 percent of autistic LGBTQ+ people reported being refused services, the study found.

Benham knows she has to create opportunities for those without the privileges she has had. “As a white autistic cis woman, I am not the most marginalized of our community,” she says. “So for me, to begin to pave the way will make the difference for other people who are going to come behind me who will represent the full diversity of our community.”

She has shown that autistic people can work in advocacy and nonprofits — and run and win a race. Her next goal is to show she can govern.

How to be openly autistic

After the November 7, 2017 election, Sarah Selvaggi Hernandez became a member of the Enfield, Connecticut board of education. Selvaggi Hernandez is an occupational therapist, assistant professor, and now one of the first openly autistic people elected to political office.

Sarah Selvaggi Hernandez first considered the possibility of running for office last January. She became politically involved during Bernie Sanders’ primary campaign. After Sanders failed to secure the nomination, Selvaggi Hernandez wanted to remain involved at the local level. She felt profoundly disappointed with local politics and particularly the education system. Two of Selvaggi Hernandez’s three children currently attend school in Enfield.

Around the same time as Selvaggi Hernandez pondered running for office, the chairman of Enfield’s Board of Education started posting racist and inflammatory memes on social media. Selvaggi Hernandez said of the memes, “Two of them targeted Hispanic students (literally entitled ‘magnet school students’), which is obviously unacceptable.”

the Enfield Board of Education said it was unable to take formal action because the chairman was a volunteer. Although the chairman apologized, he retained his position until the most recent election. These events galvanized Selvaggi Hernandez. “Even though the socialization required to run for office was challenging for me as an autistic, I knew I had to show up and do SOMETHING [sic],” she told NOS Magazine.

Selvaggi Hernandez ran for the Board as a Democrat. In Enfield, candidates must first go through a selection process in order to earn nomination. The Democrats and Republicans each nominate five Board candidates, for a total of nine spots available.

To earn nomination, Sarah Selvaggi Hernandez went through an application and interview process. The nomination committee selected her as a Board of Education candidate. Typically, the town committee automatically approves the nomination committee’s selections. But Selvaggi Hernandez’s candidacy hit a slight snag because an incumbent Board member was not asked to run for reelection. Some members of the town committee rallied in favor of the incumbent. Selvaggi Hernandez worried that she might be asked to step down. Ultimately, she and the other nominees were approved. In August of 2017, she began her campaign.

Campaigning for local office is a communal activity in Enfield. Once the parties selected a slate of nominees for the Board of Education, town council, and constables, the group campaigned as a team. When Selvaggi Hernandez went knocking on doors, she went with other Democratic candidates for office.

For her, the opportunity to campaign in a group proved helpful. “The communication thing was difficult until I got the hang of it,” she said. “So they gave me a lot of space to watch/listen/learn until I felt comfortable.”

The campaign required Selvaggi Hernandez to participate in weekly team meetings. She also had aschedule of social events, such as Comedy Night or Meet and Greets. At all events, candidates made themselves available to voters and answered questions.

Selvaggi Hernandez also took part in a formal debate. While she was excited for the opportunity to participate, Still, Selvaggi Hernandez experienced nerves during the debates. She said, “the lights were nauseating. That was the most difficult part, oddly.” Selvaggi Hernandez was thankful that she could sit next to a teammate, who wrote encouraging notes to her throughout the debate.

During the campaign, Selvaggi Hernandez openly discussed her autistic identity with voters and other nominees. She said, “On the campaign trail, I would tell constituents directly about my diagnosis if appropriate and talk about my experiences and supports. My entire team knew. And we referenced it often.”

Discussing her disability proved useful when Selvaggi Hernandez addressed differences in learning among students. Selvaggi Hernandez and her fellow nominees explained to constituents, “We believe that all students have a right to a dynamic, engaging education. We also believe that our students of differing abilities are guaranteed supports that help scaffold their educational experience. […] Each student is unique and needs different levels of support.”

Selvaggi Hernandez sees numerous problems with how disabled students fare in Enfield’s education students. Some students don’t receive the services and supports mandated by their Individualized Education Plans, or IEP’s, while others aren’t being adequately challenged. Moreover, some people resent students with disabilities. “There’s a lot of resentment to the amount of our budget that’s allocated for special education resources,” she said.

In campaigning, Selvaggi Hernandez encountered several people who voiced such sentiments on social media. She developed a standard response to these objections. Selvaggi Hernandez said, “My typical short response was that these children were entitled to a public education in the least restrictive environment by law, and we are responsible to ensure their needs are being adequately met and challenged. Sometimes, depending on the tone, I’d talk about my autism here to highlight my own challenges and how having supports has allowed me to continue to progress well into adulthood.”

Selvaggi Hernandez emphasized that while she encountered ableist comments on social media, she received strong in-person support from constituents she met. However, she did bristle at being referred to as “high-functioning,” which she feels is dehumanizing to all autistic people. Selvaggi Hernandez said that she’s still working on the most effective way to navigate this issue.

For her, running for election and winning has provided a greater sense of community. Selvaggi Hernandez’s family is relatively new to Enfield, having moved three years ago. Until running for the board, she hasn’t been able to form many social relationships. “This was a great way to really connect with people on an honest level,” she said. “I feel like I made real, true friends.”

Once she dives into Board work, Selvaggi Hernandez has a full agenda. She said, “I want to bring more cost-effective support services for ALL students to prove one-on-one or small group opportunities.”

She also wants to create more opportunities for students to move around during the school day. Currently, younger students have one 20-minute recess. Selvaggi Hernandez wants to change that to two recesses per day. Older students only receive half a year of gym class, she wants to change that to a full year.

Selvaggi Hernandez strongly encourages other autistic people who are considering running for office to “go for it.” Her advice for autistic candidates: “Be honest and communicate your needs/preferences. Tell people on your team how they can support you. Highlight your skills and expertise. Create sensory supports to help cope with the increased socialization. Set limits on how many events you’ll attend.”

Selvaggi Hernandez’s election represents a major milestone for the autistic community. If and when the next autistic person decides to run for office, they won’t be alone..

Q&A with Dr. Thomas Frazier, CSO of Autism Speaks

Parents of children with autism likely have a lot of questions before, during and after a diagnosis.

One of the nation’s leading advocates for autism awareness has some advice.

Dr. Thomas Frazier is the chief science officer of Autism Speaks, an advocacy organization that sponsors research and conducts awareness activities throughout the country.

Frazier also is the parent of a child with autism, he has published more than 100 studies and has led the Cleveland Clinic’s autism research unit.

Frazier took time out of his busy travel schedule to answer some questions on autism and provide tips for parents.

If a parent discovers his or her child has been diagnosed with autism, what should be the first priority?

Frazier: “Speak with the clinician about what they think the next steps are. Parents can also access (an) Autism Speaks 100-day kit for additional information and resources. It is important that parents maintain a relationship with a clinician who can provide guidance, re-evaluation as the child develops and support. Family and caregiver quality of life are key to successful development for all children, but especially children with autism.”

Do parents have to communicate different with autistic children, and if so, how?

Frazier: “It depends on the child, their age and developmental level. For younger children with greater cognitive difficulties, communication can be a challenge. Parents may need to use short phrases, speak slower, articulate better and focus on only using phrases that the child has learned and can respond to while the child is building the ability to respond to new phrases. For older children without cognitive difficulties, communication can be quite like communication with neurotypical children. Even in these cases, though, it can be important to clarify what people are thinking and feeling to make it easier for the child to process the full situation.”

Are there basic tasks parents take for granted that kids with autism might struggle with?

Frazier: “In general, parents of children with autism know their child and learn what they can and cannot do. However, there are some cases where, as parents, we forget to adapt our language to be most appropriate to the child. Some children with autism struggle with multi-step directives, and as a result, it may appear that they are noncompliant when they don’t fully understand what is being asked of them, or they are not able to hold all the information in mind when completing the task. It is crucial that parents be patient and attentive to their children so that they learn — and remember to use language or other communication methods that are most effective and that promote success. It is also important to remember that even when everything is done well, children with autism can struggle with new situations or situations that involve lots of sensory stimulation. Building in accommodations, breaks, clear and simple communication is essential in these moments.”

What exercises/activities are common to help overcome barriers created by autism?

Frazier: “There is no specific exercise or activity that works for all children with autism. Some children benefit from preparation before a challenging situation. Some children benefit from a visual schedule that describes the sequence of activities. Many children require gradual exposure to new situations to facilitate successful participation. And most children with autism require active teaching and facilitation to engage in successful peer interaction.”

What do kids with autism request/need most from their parents?

Frazier: “Same as neurotypical kids: love. They also need patience, persistence and a calm demeanor. Parents of children with autism who understand how to prompt and reinforce appropriate functional behavior are the most effective parents. As with all kids, many children with autism attempt to escape demands or try to gain parental attention using negative behavior. In the case of escaping demands, it is important that parents work with therapists to require completion of at least a portion of the task (coming back and building toward full completion) before allowing escape. For situations where children use negative behavior to gain attention, it is important that parents actively teach children how to appropriately gain attention and at the same time, ignore inappropriate attempts to gain attention.”

This story was first published in 2019. It has since been updated.

Q&A with Dr. Thomas Frazier, CSO of Autism Speaks

Parents of children with autism likely have a lot of questions before, during and after a diagnosis.

One of the nation’s leading advocates for autism awareness has some advice.

Dr. Thomas Frazier is the chief science officer of Autism Speaks, an advocacy organization that sponsors research and conducts awareness activities throughout the country.

Frazier also is the parent of a child with autism, he has published more than 100 studies and has led the Cleveland Clinic’s autism research unit.

Frazier took time out of his busy travel schedule to answer some questions on autism and provide tips for parents.

If a parent discovers his or her child has been diagnosed with autism, what should be the first priority?

Frazier: “Speak with the clinician about what they think the next steps are. Parents can also access (an) Autism Speaks 100-day kit for additional information and resources. It is important that parents maintain a relationship with a clinician who can provide guidance, re-evaluation as the child develops and support. Family and caregiver quality of life are key to successful development for all children, but especially children with autism.”

Do parents have to communicate different with autistic children, and if so, how?

Frazier: “It depends on the child, their age and developmental level. For younger children with greater cognitive difficulties, communication can be a challenge. Parents may need to use short phrases, speak slower, articulate better and focus on only using phrases that the child has learned and can respond to while the child is building the ability to respond to new phrases. For older children without cognitive difficulties, communication can be quite like communication with neurotypical children. Even in these cases, though, it can be important to clarify what people are thinking and feeling to make it easier for the child to process the full situation.”

Are there basic tasks parents take for granted that kids with autism might struggle with?

Frazier: “In general, parents of children with autism know their child and learn what they can and cannot do. However, there are some cases where, as parents, we forget to adapt our language to be most appropriate to the child. Some children with autism struggle with multi-step directives, and as a result, it may appear that they are noncompliant when they don’t fully understand what is being asked of them, or they are not able to hold all the information in mind when completing the task. It is crucial that parents be patient and attentive to their children so that they learn — and remember to use language or other communication methods that are most effective and that promote success. It is also important to remember that even when everything is done well, children with autism can struggle with new situations or situations that involve lots of sensory stimulation. Building in accommodations, breaks, clear and simple communication is essential in these moments.”

What exercises/activities are common to help overcome barriers created by autism?

Frazier: “There is no specific exercise or activity that works for all children with autism. Some children benefit from preparation before a challenging situation. Some children benefit from a visual schedule that describes the sequence of activities. Many children require gradual exposure to new situations to facilitate successful participation. And most children with autism require active teaching and facilitation to engage in successful peer interaction.”

What do kids with autism request/need most from their parents?

Frazier: “Same as neurotypical kids: love. They also need patience, persistence and a calm demeanor. Parents of children with autism who understand how to prompt and reinforce appropriate functional behavior are the most effective parents. As with all kids, many children with autism attempt to escape demands or try to gain parental attention using negative behavior. In the case of escaping demands, it is important that parents work with therapists to require completion of at least a portion of the task (coming back and building toward full completion) before allowing escape. For situations where children use negative behavior to gain attention, it is important that parents actively teach children how to appropriately gain attention and at the same time, ignore inappropriate attempts to gain attention.”

This story was first published in 2019. It has since been updated.

by Eric Garcia / 17 November 2020
Topics:
Science & Society
Download PDF
Republish this article
Discuss this article

How to be openly autistic

Eric Garcia

The Expert:

How to be openly autistic

Eric Garcia

Jessica Benham was born a few months after the passage of both the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA) in 1990. It’s something that Benham, who is autistic, highlighted when I spoke to her on 5 November, two days after she won a seat in Pennsylvania’s state legislature, representing the Pittsburgh area. Those laws paved the way for her and other autistic politicians taking office.

In addition to Benham, two other state legislators — Democrat Yuh-Line Niou of New York and Republican Briscoe Cain of Texas — have said they are autistic, but Cain didn’t reveal his diagnosis until after he was elected. He did so in a speech on the Texas House floor last year, when he proposed a resolution to make April Autism Awareness Month. Niou first spoke about her autism in an interview with a website run by college students when she ran in 2016, and elaborated on it after she was elected.

By contrast, Benham, a Democrat, was openly autistic when she announced her run for office last year, and she made it a central part of her persona as a candidate.

Benham’s ascent to the Pennsylvania State Legislature in Harrisburg matters because it signifies that autistic people are coming into their own as political players. Her election and public presence also challenge perceptions of what autism looks like: She is finishing her dissertation for her Ph.D. at the University of Pittsburgh; she co-founded the Pittsburgh Center for Autistic Advocacy; she has been married for seven years and owns her own home.

“For a long time now, autistic people have been really effective policy advocates, and certainly some folks have held elected office who have not been open about their diagnosis,” Benham says. “But having somebody who is loud and proud, as it were, means that people can’t ignore the way their policies impact people like me.”

Her victory is important for autistic people and their loved ones because it means that she and other autistic politicians can advocate for policy and research on the priorities that matter most to them, including quality-of-life issues. This marks a shift from when parents, caregivers and researchers were the main advocates and policymakers speaking about autism. Although parents can be valuable allies in fighting for their loved ones, their advocacy and representation can only go so far; they don’t live autistic lives, and at times their interests might even contradict the desires of autistic people themselves.

A shift in advocacy:

For years, many people misunderstood autism as a narrow diagnosis. It was only in the 1980s that autism entered the third edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) as a ‘pervasive developmental disorder’ separate from schizophrenia. And it wasn’t until the 1990s, when Benham was a child, that autism was first considered a spectrum condition, encompassing different levels of support needs, in the DSM-IV.

With these shifts, public policy moved toward accommodating autistic people, delivering benefits for those born after the ADA and IDEA. But those laws still are not nearly enough.

Benham says she aims “to fight for those things inspired by my own life experiences” and would like to be on the human services committee in the Pennsylvania legislature. “Off-handedly, [a colleague] said, ‘Oh, you could really own that space,’” she says. “And I said, ‘It’s about time someone with a developmental disability owns that space.’”

Benham didn’t run to make history but to make a difference, she says, and she plans to work on disability-specific topics such as education funding, how the care system is run and how Medicaid waivers work to help autistic and disabled people receive services at home.

She also knows how important her victory is for the LGBTQ+ community. She is the first bisexual candidate elected to Pennsylvania’s legislature. Almost 70 percent of autistic people identify as members of the LGBTQ+ community, according to one 2018 study, compared with only 30.3 percent of non-autistic people 1 .

Many autistic LGBTQ+ people say they are ignored or, because they are autistic, frequently face questions about whether they are actually LGBTQ+. One study published this past February found that LGBTQ+ respondents have much higher rates of mental illness, poor physical health and smoking compared with their straight, cisgender counterparts on the spectrum 2 . LGBTQ+ participants also have higher rates of not seeing a doctor or specialist and not obtaining prescriptions. Most alarmingly, 35.7 percent of autistic LGBTQ+ people reported being refused services, the study found.

Benham knows she has to create opportunities for those without the privileges she has had. “As a white autistic cis woman, I am not the most marginalized of our community,” she says. “So for me, to begin to pave the way will make the difference for other people who are going to come behind me who will represent the full diversity of our community.”

She has shown that autistic people can work in advocacy and nonprofits — and run and win a race. Her next goal is to show she can govern.

What are the best aspects of autism?

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Steven Gans, MD, is board-certified in psychiatry and is an active supervisor, teacher, and mentor at Massachusetts General Hospital.

Autism is a serious disorder that can interfere with every aspect of life. So why is it that so many people see autism in a positive light? Yes, many things are challenging for people on the spectrum and the people who love them, but for every downside to autism, there seems to be an upside too.

People with autism have uniquely positive traits that are rare or even nonexistent among neurotypical individuals. It’s important to note that these positive traits are not unique to savants with special talents or skills; rather, they are present in almost every person with autism.

If you’re tired of hearing about the problems associated with autism, try pinning this list up on your fridge or sharing it with friends, family, and school staff. It’s a great way to help others recognize that not every aspect of autism is a “symptom.”

People With Autism Rarely Lie

How to be openly autistic

We all claim to value the truth, but almost all of us tell little white lies. More significantly, many neurotypical people actively hide important truths from the people around them.

People on the autism spectrum, however, tell the truth—whether it’s positive or negative. That means a person with autism will accurately reflect their feelings and respond with complete candor when asked their opinion. If a person with autism says you look terrific you can be pretty sure you’re having a good hair day.

They Live in the Moment

How often do typical people fail to notice what’s in front of their eyes because they’re distracted by social cues or random chitchat? People on the autism spectrum truly attend to the sensory input that surrounds them.

Some see the beauty that others miss, though they pass by it every day. Many have achieved the ideal of mindfulness, even if they don’t have the tools to communicate their state of mind to others.

They Rarely Judge Others

Who’s fatter? Richer? Smarter? Prettier? Does that person have a degree from the right college or belong to the right church?

For people on the autism spectrum, these distinctions hold much less importance than for their neurotypical peers. In fact, people on the spectrum often see through such surface appearances to discover the real person.

People with autism rarely judge other people with disabilities. Where a typical peer might steer clear of a classmate with Down syndrome or a physical disability, people with autism are more likely to be accepting of differences.

People With Autism Are Passionate

Many people on the spectrum are truly passionate about the things, ideas, and people in their lives. They spend the time, energy, and imagination necessary to truly master their area of interest, and they stick with it even when it’s difficult, frustrating, or “uncool.” How many “typical” people can say the same?

They Are Not Tied to Social Expectations

If you’ve ever bought a car, played a game, or joined a club to fit in, you know how hard it can be to be true to yourself. But for people with autism, social expectations can be honestly unimportant.

Who cares if someone you’ve never met rolls their eyes when you mention your interest in Disney movies even when you’re a grown-up? What matters is true liking, shared interests, kindness, and the desire to spend time together—not keeping up with or being as similar as possible to the Joneses.

They Have Terrific Memories

How often do typical people forget directions, or fail to take note of colors, names, and other details? People on the autism spectrum are often much more tuned in to details. In many cases, they have a much better memory than their typical peers for all kind of critical details.

In fact, a surprisingly large number of people on the spectrum have photographic memories, perfect pitch, and/or an almost perfect memory for songs, poems, and stories. This skill can be a huge asset in situations ranging from direction-finding to writing a family history.

They Are Less Materialistic

Of course, this is not universally true—but in general, people with autism are far less concerned with prestige and status than their neurotypical peers.

As a result, they worry less about brand names, high-end restaurants, and other expensive but unimportant externals than most people do. They are also less inclined to see salary or title as desirable for their own sake.

They Play Fewer Head Games

“Do I look fat in this outfit? Tell me the truth—I won’t get mad!”

“I know I told you I didn’t mind if you went out, but why did you believe me?”

Few autistic people play games like these—and they assume that you won’t either. It’s a refreshing and wonderful change from the emotional roller coaster that mars too many typical relationships.

Of course, part of the reason for this lack of subterfuge is the reality that autistic people find head games baffling. Why would someone ask a question if they don’t want an answer?

They Have Fewer Hidden Agendas

Most of the time, if a person on the autism spectrum tells you what he wants he is telling you what he wants. No need to beat around the bush, second guess, and hope you’re reading between the lines.

This may be due, in part, to the fact that many autistic people are unaware of or baffled by others’ choice to hide their real intentions.

They Open New Doors for Neurotypical People

For some neurotypical people, having an autistic person in their life has had a profound positive impact on their perceptions, beliefs, and expectations. Being the parent or sibling of someone on the autism spectrum can release you from a lifetime of “should”—and offer you a new world of “is.”

Awareness of autism spectrum disorder (ASD) in adults has grown dramatically in recent years, which reflects both an increase in diagnoses and in the public’s understanding that, even late in life, a diagnosis can offer major benefits and relief. Learn more about the symptoms of autism in adults here.

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How to be openly autistic

Could You Have Symptoms of Autism in Adults?

Autism spectrum disorder (ASD) occurs in all age, racial, ethnic, and socioeconomic groups, according to the Centers for Disease Control 1 . Autism is generally characterized by social and communication difficulties and by repetitive behaviors. Often, severe forms of ASD are diagnosed in the first two years of a child’s life, but high-functioning individuals may not be diagnosed until much later in life.

Signs of autism occur in three main areas:

  • Social interactions
  • Verbal and nonverbal communication
  • Repetitive or ritualistic behaviors

Adults with autism who are high functioning may have only mild challenges, which are sometimes mistaken for symptoms of attention deficit hyperactivity disorder (ADHD); others may have more severe symptoms, like impaired spoken language. No two people with ASD will have the same symptoms manifested in the same way. Regardless of manifestation or severity, ASD symptoms commonly interfere with everyday life. And as our understanding of those challenges improves, more people than ever are being diagnosed with ASD.

Symptoms of Autism Spectrum Disorder in Adults

Common symptoms of autism in adults include:

  • Difficulty interpreting what others are thinking or feeling
  • Trouble interpreting facial expressions, body language, or social cues
  • Difficulty regulating emotion
  • Trouble keeping up a conversation
  • Inflection that does not reflect feelings
  • Difficulty maintaining the natural give-and-take of a conversation; prone to monologues on a favorite subject
  • Tendency to engage in repetitive or routine behaviors
  • Only participates in a restricted range of activities
  • Strict consistency to daily routines; outbursts when changes occur
  • Exhibiting strong, special interests

Autism spectrum disorder (ASD) is typically a life-long condition, though early diagnosis and treatment can make a tremendous difference.

Autism Symptoms in Adults at Home

Other peoples’ feelings baffle you. You have a collection of figurines on your desk that must be in the same order at all times. These, and other common manifestations of ASD, may be apparent in adults at home:

  • Your family members lovingly refer to you as the “eccentric professor” of the family, even though you don’t work in academia.
  • You’ve always wanted a best friend, but never found one.
  • You often invent your own words and expressions to describe things.
  • Even when you’re in a quiet place, like the library, you find yourself making involuntary noises like clearing your throat over and over.
  • You follow the same schedule every day of the week, and don’t like unexpected events.
  • Expressions like, “Curiosity killed the cat” or “Don’t count your chickens before they hatch” are confusing to you.
  • You are always bumping into things and tripping over your own feet.
  • In your leisure time, you prefer to play individual games and sports, like golf, where everyone works for themselves instead of working toward a common goal on a team.

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Autism Symptoms in Adults at Work

Symptoms of ASD vary greatly from person to person based on the severity of the condition. These or similar manifestations of ASD may be apparent at work:

  • When you’re having a conversation with your boss, you prefer to look at the wall, her shoes, or anywhere but directly into her eyes.
  • Your co-workers say that you speak like a robot.
  • Each item on your desk has a special place, and you don’t like when the cleaning company rearranges it to dust.
  • You are really good at math, or software coding, but struggle to succeed in other areas.
  • You talk to your co-workers the same way you talk with your family and friends.
  • During meetings, you find yourself making involuntary noises, like clearing your throat over and over.
  • When talking with your boss, you have difficulty telling if he is happy with your performance or mad at you.

In addition, individuals with ASD may exhibit extraordinary talents in visual skills, music, math, and art. And roughly 40 percent of individuals with ASD have average or above-average intelligence.

If you experience these or similar symptoms of ASD, consult a doctor or mental-health professional for a formal assessment and learn more about treatment options for autism symptoms in adults.

Signs of Autism in Adults: Next Steps

  • Take: The Autism Test for Adults
  • Read: How Autism in Women Is Different: Unique ASD Symptoms, Risks
  • Read: The Most Commonly Misdiagnosed Symptoms of Autism in Adults
  • Get:Coping Strategies for Adults with Autism

1 “Data & Statistics on Autism Spectrum Disorder.” Centers for Disease Control and Prevention. Ed. Center for Disease Control. Centers for Disease Control and Prevention. Accessed 12 Dec. 2019.

Autism is a neurodevelopmental disorder characterized by:

  • social impairments
  • cognitive impairments
  • communication difficulties
  • repetitive behaviors

Because Autism is a spectrum disorder, it can range from very mild to very severe and occur in all ethnic, socioeconomic and age groups. Males are four times more likely to have autism than females. Some children with autism appear normal before age 1 or 2 and then suddenly “regress” and lose language or social skills they had previously gained. This is called the regressive type of autism.

A person with ASD might:

  • Not respond to their name (the child may appear deaf)
  • Not point at objects or things of interest, or demonstrate interest
  • Not play “pretend” games
  • Avoid eye contact
  • Want to be alone
  • Have difficulty understanding, or showing understanding, or other people’s feelings or their own
  • Have no speech or delayed speech
  • Repeat words or phrases over and over (echolalia)
  • Give unrelated answers to questions
  • Get upset by minor changes
  • Have obsessive interests
  • Flap their hands, rock their body, or spin in circles
  • Have unusual reactions (over or under-sensitivity) to the way things sound, smell, taste, look, or feel
  • Have low to no social skills
  • Avoid or resist physical contact
  • Demonstrate little safety or danger awareness
  • Reverse pronouns (e.g., says “you” instead of “I”)

People with autism may also:

  • Have unusual interests and behaviors
  • Have extreme anxiety and phobias, as well as unusual phobias
  • Line up toys or other objects
  • Play with toys the same way every time
  • Like parts of objects (e.g., wheels)
  • Become upset by minor changes
  • Have obsessive interests
  • Hyperactivity (very active)
  • Impulsivity (acting without thinking)
  • Short attention span
  • Aggression
  • Causing self injury
  • Meltdowns
  • Unusual eating and sleeping habits
  • Unusual mood or emotional reactions
  • Lack of fear or more fear than expected
  • Have unusual sleeping habits

M-CHAT-R TM General Information

The Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F; Robins, Fein, & Barton, 2009) is a 2-stage parent-report screening tool to assess risk for Autism Spectrum Disorder (ASD). The M-CHAT-R/F is an autism screening tool designed to identify children 16 to 30 months of age who should receive a more thorough assessment for possible early signs of autism spectrum disorder (ASD) or developmental delay.

The American Academy of Pediatrics (AAP) recommends that all children receive autism-specific screening at 18 and 24 months of age, in addition to broad developmental screening at 9, 18, and 24 months. The M-CHAT-R/F, one of the AAP recommended tools, can be administered at these well-child visits.

If you and your physician agree that further screening is needed, you can request a free developmental assessment through your State Department of Health.

For more information on M-CHAT-R, visit http://m-chat.org.

Developmental Screening

Developmental screening is a short test to tell if children are learning basic skills when they should, or if they might have delays. During developmental screening the doctor might ask the parent some questions or talk and play with the child during an exam to see how she learns, speaks, behaves, and moves. A delay in any of these areas could be a sign of a problem.

All children should be screened for developmental delays and disabilities during regular well-child doctor visits at:

  • 9 months
  • 18 months
  • 24 or 30 months

Additional screening might be needed if a child is at high risk for developmental delays due to preterm birth, low birth weight, having a sibling with ASD or if behaviors associated with ASDs are present.

If your child’s doctor does not routinely check your child with this type of developmental screening test, ask that it be done. If the doctor sees any signs of a problem, a comprehensive diagnostic evaluation is needed.

Comprehensive Diagnostic Evaluation

The second step of diagnosis is a comprehensive evaluation. This thorough review may include looking at the child’s behavior and development and interviewing the parents. It may also include a hearing and vision screening, genetic testing, neurological testing, and other medical testing.

In some cases, the primary care doctor might choose to refer the child and family to a specialist for further assessment and diagnosis. Specialists who can do this type of evaluation include:

  • Developmental Pediatricians (doctors who have special training in child development and children with special needs)
  • Child Neurologists (doctors who work on the brain, spine, and nerves)
  • Child Psychologists or Psychiatrists (doctors who know about the human mind)

If your child is young and you suspect there might be something wrong, immediately seek early intervention services for your child. Click here for more information on Early Intervention.