Ramunas M / Shutterstock
Source: Ramunas M / Shutterstock

By Kimberly Stephens

The days when “autism” meant little more than Rain Man are long gone. Temple Grandin is a household name. The Autism Speaks puzzle piece is ubiquitous. Last year, Sesame Street introduced an autistic Muppet.

But autism is even more complex than most people realize. The autistic population is wildly diverse. The genetic and biological underpinnings of autism are infamously heterogeneous. So as we light it up blue for Autism Awareness Month, which aspects of autism are most in need of more attention? 

I canvassed individuals across this community and asked them what they wished received more attention or was better understood. I condensed and edited their responses. The topics covered here aren’t comprehensive; this is certainly only a start. Which aspects of autism do you wish people were more aware of?

THE IMPORTANCE OF RELATIONSHIPS—ROMANCE, SIBLINGS, & THE DESIRE FOR CONNECTION

Alex Plank
Founder of WrongPlanet.net and Autism Talk TV, diagnosed with Asperger’s

I’ve found that people have a lot of trouble with romantic relationships. On my website [WrongPlanet.net] there’s a forum for love and dating. Constantly I read posts about guys who’ve never been able to go on a date, don’t know how to flirt. A lot have never even had a kiss. These are guys sometimes in their 30s, 40s even, which to me is pretty tragic considering that everyone wants to have a human connection and that’s a pretty important part of most people’s lives.

Ron Suskind
Author of Life, Animated, a memoir about his autistic son

Siblings live the whole life journey together, from the beginning to the end. My sons Walter and Owen really grew up in unison. The relationship was formative for each of them, truly formative. It’s often thought about as, here is the person with autism, who is distinct, and the neurotypical person, who is just like everybody else. But they’re not. They’re changed by the experience and I think certainly not in a bad way. That bond, which is indelible, ends up being so defining. There’s an understanding of how powerful the word brother or sister can be, even with all that the world throws out at it and when the hand that some of these folks have been dealt seems to challenge it—it does and it deepens it. It’s quite beautiful.

Daniel Wendler
Author of Improve Your Social Skills, diagnosed with Asperger’s

Many people think that because autistic people may lack social skills or become overwhelmed in social situations, that they don't care about connecting with others. But I think the desire for intimacy is a human need, not a neurotypical need. An autistic person may need to connect with others differently than a neurotypical person would. But if more people knew that autistic people can feel lonely, too, I think they might put the effort into finding a way to connect.

ENGAGEMENT, NOT SYMPATHY

Yetta Myrick
Founder of DC Autism Parents, mother of an autistic son

No parent asked for their child to have autism. No child you know wants to be facing these challenges on the day to day. But our children are going to have challenges so we need to ensure that they have the best chance possible. Some people might feel like autism is the end of the world, and that’s their right. But by the same token, I’m looking at all the things my child can do. I’m learning from him every day. There’s a good and bad to everything. These kids, regardless of where they are, all are a gift. If people really want to help and make changes, you have to learn to treat them like human beings. Feeling sorry for folks is not going to help anything.

Sarah Kane
Mother of four autistic children

You always feel like you’re not doing enough.  You tell yourself that you’re their mom, you can do this. But at one point or another, it’s just so much. One person can’t do it on their own. You need help. I love it and appreciate it when people ask if they can help. I don’t take offense to that. Sometimes it’s a huge thing to have someone be like, “Can I help you push your cart while you hold your kid while you’re walking around the store? Can I hold this kid? Can I help in any way?” It’s really awesome for people not to be scared of us or our children even when the situation looks scary.

Jamie Pacton
Blogger for Parents magazine, mother of an autistic son

Autism acceptance begins by listening to actually autistic people. Read their blogs and books, follow them on social media, start conversations with them—they are important voices in any discussion of autism, and I've learned so much about how to parent my own autistic son from them. From listening to autistic people, I better understand his challenges (from meltdowns to sensory and communication issues), and I have a much more positive perspective on what's possible for his future. 

Susan Senator
Author of Autism Adulthood: Strategies and Insights for a Fulfilling Life, mother of an autistic adult son

The most important thing is not to dismiss people who are unusual or challenging. The whole reason I started writing about autism first came from my son and wanting for people to know him and not dismiss him. Then it grew to feeling that way about all people on the spectrum. Now I have a full range of knowledge of all the ways that we can avoid that kind of dismissal and really engage with people who are neurologically different.

ACCEPTANCE

Jamie Pacton
Blogger for Parents magazine, mother of an autistic son

We need to rid ourselves of the rhetoric of “burden” and “cure” when talking about autism. Our kids are not puzzle pieces. They are not somehow less. They are different. Autism represents a different neurology entirely—not a broken one. It brings gifts and challenges. We can't just constantly be saying things like autistic kids need to be fixed or that they've been "stolen away" by autism. Thinking like that is ableist, dangerous, and it ignores the gifts for the challenges. 

Mary Bailey
Mother of an autistic son

I’d be considered neurotypical. But if I’m on the side of the road and my tire is blown out, I won’t be changing that tire. Consider me disabled in that moment. I’ll have to call somebody. I’ll need help. The autistic require help in different areas, but I can’t do life by myself either. Speech and things like that—I’m not saying those aren’t necessities. With acceptance, you don’t necessarily give up and stop trying. I should probably learn how to change a tire. But relating back to the areas we need help leaves room for us to show grace to other people.

Melissa Diamond
Founder of A Global Voice for Autism

Normal is not the answer. When we ask families to set goals for their children, often one of their first goals is for their child “to be normal.” People, especially in minority communities and communities with limited resources, need to be exposed to more examples of individuals with autism living full and meaningful lives. This doesn't just mean individuals who are classified as “high functioning” and who can work independently, but individuals with autism with a range of skills and challenges.

Mary J. Baker-Ericzén
Associate research scientist & clinical psychologist, CASRC, Autism Discovery Institute; Rady Children’s Hospital

The autistic don’t always have to be the ones changing. Maybe we as a community or environment need to do some of that changing. Clinically I work with folks a lot, and what we have as a motto is the yin-yang balance symbol. The balance is between how much do they change and how much does the environment change, including their parents and their teachers.

MAXIMIZING THE STRENGTHS

Chase Bailey
Host of Chase ‘N Yur Face, diagnosed with an autism spectrum disorder

It’s not entirely bad. The good thing is that you have a creative mind. Your brain is more creative than any other kind, and you like who you are and your family loves you.

Bob Koegel
Director of the Koegel Autism Center, University of California, Santa Barbara

I think that people ought to understand more about people with autism’s strengths. People with autism tend to be very honest. The other thing that is important is this attention to detail. They really focus on things and get the little details. Kind of related to that is following the rules. Sometimes it’s very important to follow the rules very closely. They are humble. They don’t run around bragging and saying, ‘I’m the greatest,’ even if they are. If everybody didn’t focus so much on the negative and focused on strengths, they’d see that these kids can contribute, and some of them can really contribute. Some of those savant skills are just off-the-top-of-the-charts amazing. We just have to find a place for it. 

Gwen Kansen
Writer, diagnosed with Asperger’s

I had a scholarship to a pre-opera program. I can sing obviously, but I couldn’t handle the multitasking of being on stage and keeping up with the conductor’s cues and the cues of the other singers and the hot lights on the stage. It’s great to have this splinter skill of music, but not being able to do all the other stuff means it’s kind of difficult to use it. I wish it were different.

Mary Bailey
Mother of an autistic son

A lot of people focus on the medical aspects of an autism diagnosis. In doing that you separate out the humanity of the person. But [my son] Chase is hilarious. He’s got a great sense of humor, and a lot of these kids do. These kids and adults are hysterical. They’re talented. They have a lot to offer. That’s another reason we continue with his shows and YouTube channel is to change that perspective and to have people look at you and say, ‘wait a minute, this is Chase. Autism happens to be a part of who he is, but Chase is first.’ Not autism is first and the person is second.

Lynn Koegel
Clinical Director of the Koegel Autism Center, University of California, Santa Barbara

Most people’s training in special education, including my own (I have a PhD in psychology but an MA in speech therapy), was to look for deficits and try to catch the kids up on those deficits. But we never really thought about looking at what their strengths are. If we can take the interests of the kids, which are sometimes a strength, sometimes a perseverative interest, and really expand from there, I think we’d have the wind at our back. We can teach so many things we could never ever teach if we didn’t have these interests as a motivational aspect of the intervention.

Lisa Gilotty
Chief of the autism research program at the National Institute of Mental Health

If I had to choose an area that I think deserves more attention, it would be how to maximize the strengths of people with autism to enable them to succeed in school, work, and life. Too many of them are struggling because their skills are under- or unutilized. In some corners, this aspect of autism is not even acknowledged let alone addressed. It would serve society well as a whole if we placed more emphasis on this, and it might help to ensure that people with autism realized their full potential.

Mary J. Baker-Ericzén
Associate research scientist & clinical psychologist, CASRC, Autism Discovery Institute; Rady Children’s Hospital

We’re still in the infancy of education around all the strengths of autism. Some of my own clients have adapted some of my materials or posters that call autism a developmental disability or a neurodevelopmental disorder. They like to cross out the words disorder and disability. I find that fantastic because it can be a way of being; it can be a part of a person. It doesn’t always have to have it as a problem. One of my very astute teens decided to make a different definition. He described autism as a genetic change with many upgrades.

ACKNOWLEDGING THE WHOLE SPECTRUM

Yetta Myrick
Founder of DC Autism Parents, mother of an autistic son

I have a son who is 12 who is on the autism spectrum. He is not an Asperger kid. He is not necessarily severe. But he does have the language impairment and he has some delays. Can my son ride a horse? Yeah, he’s doing really well at that. Could he be an artist? Yes, and I’m trying to provide all the support that I can for him so that he can maybe create a career out of that. Is he going to be a huge talker? Probably not. Is it going to be difficult for him to maneuver in society? Yes, it might be a lifelong problem.

Brad Kane
Father of four autistic children

Having autism doesn’t mean everyone acts the same. Everyone is different psychologically, neurologically. Even between our four kids, I see a lot of differences in how they act and how their developmental delays have affected them. You have to interact with them in different ways. For the kids on the milder end of the spectrum, you can talk to them and they’ll listen to what you say and it’s more of a back and forth.  For the more severe kids, we have to interact with them indirectly. We can’t just tell them things, we have to work around things and communicate in a more circular path.

Helen Tager-Flusberg
Director of the Center for Autism Research Excellence, Boston University

Almost all our neuroimaging research is on verbally fluent, cognitively able older adolescent and adult males —which tell us nothing about the other 90% of the population. Examples: What is happening differently in the brains of children with autism as they go from showing typical developmental patterns to the emergence of autism symptoms and behavior in the second year of life? What is different about girls with autism? Why do some children never acquire much spoken language even when they have had access to high quality early intervention? The answers to these questions lie in researching brain structure and function of the brain in children followed over time but we still have so few tools that can be applied to these populations.

Gwen Kansen
Writer, diagnosed with Asperger’s

For the social stuff, we start out as tabula rasa. We don’t know anything. I guess some of us are born with some intuitive knowledge. Some of us get that and some of us don’t. The social stuff can be learned. It’s difficult to take what you learned from one situation and apply it to another, but at some point you do develop a database of situations that you can apply to other situations. What makes being high functioning so difficult is that sometimes people think you’re doing well, they think you’re all right, and then at some point you do something that’s totally unexpected. You react to something in a way people totally don’t understand and that’s why people think we’re cold or creepy or weird and that’s what throws people off.

Sarah Kane
Mother of four autistic children

I think a lot of people have a hard time understanding when children with autism are non-verbal. Our daughter Brooke doesn’t talk, she just screams.  We took the kids to see Zootopia, and every time something exciting happened, Brooke was like “ahh.” After she did that a handful of times, some lady said, “Can’t you make her be quiet?” People don’t get that’s all she can do. I don’t think they’re trying to be mean, I think they just don’t understand. 

Matthew Siegel
Director, Developmental Disorders Program, Maine Behavioral Healthcare

The area receiving the least attention is those who are severely affected by autism, the 30-50% of individuals who are non- or minimally verbal, have intellectual disability and/or very low adaptive functioning. With the intense focus on the higher functioning, who account for almost all of the reported increase in autism prevalence, we have really left behind those who are often enduring the greatest impacts. Within this population, the most neglected area are those who are non-verbal. There is an absolute dearth of high quality research and treatments to address this core deficit, reflecting policy, funding, and researcher biases

AUTISM IS INTERNATIONAL

Melissa Diamond
Founder and executive director of A Global Voice for Autism

Autism does not end at the U.S. borders. From recommendations about the right ways to support an individual with autism to movements to shift from autism “awareness” to “action,” assumptions are often made that are unique to a U.S. context. This context assumes a level of resources, stability and understanding of autism that is simply not available in many parts of the world. Many of the families our organization [A Global Voice for Autism] serves have to determine day by day whether it is safe for them to leave their homes. Their travel expenses to and from the program (approximately $4/week) are a financial burden on their families. They live in communities where a child's autism is blamed on the parents' parenting abilities and parents are taught to feel ashamed rather than proud of their children with autism. I wish that there were a greater understanding that there is more than one way to be a good parent to a child with autism and a better understanding that context matters when determining what services are most appropriate. 

ADULTHOOD—EMPLOYMENT, OUTCOMES, & AGING

Susan Senator
Author of Autism Adulthood: Strategies and Insights for a Fulfilling Life, mother of an autistic adult son

The adult community is struggling, whether they have verbal speech, college degrees, or need 24/7 oversight. There just aren’t enough services. I feel that the key is being sure that state governments and the federal government make this a priority. We have to have job mentors. We have to have employers who are open-minded and accepting of the whole wide range of people. We have to have housing assistance if needed and better public transportation.

Lauren Bishop-Fitzpatrick
Postdoctoral Trainee, Waisman Center, University of Wisconsin-Madison

I wish that we understood more about how autism spectrum disorder unfolds over the life course and how we can help people with autism spectrum disorder of all abilities to construct a good life. We need to know more about factors that predict good outcomes and quality of life for adults with autism spectrum disorder so that we can develop more and better interventions and services. We also need to find out what happens to individuals with autism spectrum disorder as they age, particularly in terms of health, aging, and mortality.

Alex Plank
Founder of WrongPlanet.net and Autism Talk TV, diagnosed with Asperger’s

A lot of people have trouble with jobs. They become under-employed or unemployed, and that’s a big problem. Some of these people are incredibly brilliant, but they’re working as a cashier at Wal-Mart when they could be in a high-paying career. For some reason they are not able to do well in an interview or don’t know how to network properly to get a job, and they end up not really working to the full extent of their capabilities. I think more connections to employers for people on the spectrum and giving more support to those looking for a job is really important.

Jamie Pacton
Blogger for Parents magazine, mother of an autistic son

We need to pay more attention to life after early intervention. Autistic young adults and adults get much less support than children do, and that's not ok. The early years are important, but we can’t just stop services or support when someone turns a certain age. We need to be thinking of how to promote independence, communication, meaningful work, and community engagement at all stages of life for autistic individuals. 

Mary J. Baker-Ericzén
Associate research scientist & clinical psychologist, CASRC, Autism Discovery Institute; Rady Children’s Hospital

I wish people would start to focus on how autism shifts and changes over time. We’ve certainly gone a long way in getting the community to understand broadly the scope of autism. But it’s a real spectrum and there is real variety within there. But I think people are still focused too much on a particular developmental span, which is childhood, and are not focusing on what does autism within the spectrum look like within the developmental range and the lifespan.

THE ROLE OF GENES & ENVIRONMENT

Heather Volk
Assistant Professor, Johns Hopkins Bloomberg School of Public Health

We’ve invested a lot of time and effort into the genetics of ASD and there’s separate research into environmental factors, but it’s rare that researchers from those two disciplines come together in autism. I would hope that we would in the coming years really try to work together to develop research programs that bridge those groups and look at how genetic susceptibility to environmental factors plays a role in ASD risk. Those sorts of studies give insight into mechanisms for ASD and insights into prevention and intervention targets.

WOMEN & AUTISM

Kirsten Lindsmith
Writer, co-host of Autism Talk TV, diagnosed with an autism spectrum disorder

I feel the diagnostic gap between boys and girls is much larger than the actual gap in prevalence. I believe girls (and adult women especially) are vastly under-diagnosed due to differences in presentation, biases in professionals, and differences in enculturation between boys and girls. “High functioning,” more verbal girls who are better able to pass for neurotypical are overlooked and under-diagnosed. Girls are more likely to bounce from diagnosis to diagnosis, especially once they reach adulthood and the emotional trauma of growing up autistic starts to add up. And so we get this odd situation where researchers assume that there simply are fewer “high functioning” girls because they aren’t getting diagnoses.

FAMILY STRESS

Sarah Kane
Mother of four autistic children

The kids are our top priority.  We’ve got to always be on guard. The kids are fast, and they have no safety awareness. It’s nerve racking. Even though I go to sleep, I feel like I don’t sleep. I probably sleep with my ears and eyes wide open. I’m always listening. I want to sit down and talk to people and converse and actually enjoy their company, but if we let our guard down for a second, all hell could break loose.

Lynn Koegel
Clinical Director of the Koegel Autism Center, University of California, Santa Barbara

A huge problem we have as a society is parent stress. When the kids are younger, the parents stress more about the cognitive abilities. Then, because intervention is expensive, they tend to stress more about how they’re going to pay for the services. Then, when the children get older, the parents stress a lot about what’s going to happen to my child when I’m no longer here. It’s stressful for the marriage, too. You can’t just get the local high school kid to baby-sit. If you take your child out and they have a tantrum in public, so many parents told me that people would come up to them and say, “you’re such a bad parent.” One woman said she screamed. She lost it and said, “haven’t you ever heard of autism?”

Brad Kane
Father of four autistic children

You have conflicted emotions toward the kids. You’re always trying to be sympathetic toward the fact that they can’t communicate, but at the same time it’s frustrating not knowing exactly what they want. Some of the tantrums are pretty physical. It happens on a weekly basis that I’ll get punched or kicked pretty hard in the face. You don’t want to be mad at them, but at the same time if someone is hitting you in the face repeatedly, that can be a difficult thing. It’s an odd situation. The love for your children is always there. But at the same time, the stress does build up that they are quite a bit different and you can’t help them out and parent them in the traditional ways.

Lauren Turner-Brown
Assistant Director, TEACCH Autism Program, University of North Carolina at Chapel Hill

I think early identification and intervention are critical. Parents often spend years between the time when they become concerned something is not quite right with their child and when they get appropriate intervention and support. Often services don't do enough to support parents through this process as they go from one provider to another. We focus a lot at TEACCH on exactly that—supporting parents and educating parents—and are studying how best to focus on both child skills and parent well-being. The more parents understand autism and how it affects their child, the better.

EMPATHY

Indrajeet Patil
Researcher in neuroscience at SISSA

A prevalent myth about autism that has survived for a surprisingly long time is that they lack empathy, that they lack the ability to represent and share others’ feelings and therefore—so the argument goes—they are more likely to cause harm to others. Recent insights from the field of social neuroscience has begun to debunk this myth by revealing that the putative lack of empathic concern in autism is actually due to a personality trait called alexithymia, which is associated with emotional processing problems, reduced empathy, and lack of prosocial behavior.   

TREATMENT—FUNDING, ABA, & PRECISION MEDICINE

Mathew Pletcher
Interim chief science officer, Autism Speaks

Although it is widely recognized that the types and severity of medical issues, health concerns, and support needs associated with autism spectrum disorder vary greatly from person to person, this understanding hasn’t been effectively translated into the way we treat, diagnose, and research autism. Too often medical care and services are provided in a “one size fits all” paradigm for those individuals. The diagnostic category of autism spectrum disorder likely encompasses well over 100 genetically and clinically distinct forms of autism, and until we institute a precision medicine approach to autism, the ability to improve medical care will be limited.

Yetta Myrick
Founder of DC Autism Parents, mother of an autistic son

A lot of times in the research, people focus on finding a cure or what’s causing autism. I think the focus needs to be more on treatment. There are all these little pockets, all these little groups and subgroups that make up the autism community. I think that if people came together, we could figure out how to get these kids, whether “severe” or Asperger kids, equal access to services.

Kirsten Lindsmith
Writer, co-host of Autism Talk TV, diagnosed with an autism spectrum disorder

ABA therapy is the only federally approved and funded treatment for autism. Because behavioral therapy produces outwardly visible results, there is of course data to support it working to help correct behavioral issues. But I personally feel that we need more long-term studies examining young adults and adults who have been through ABA training as children, tracking the links between ABA and future mental health problems. We also need more well-funded studies to explore alternative therapies (DIR floortime, son-rise, and so on). Without data to back these types of interventions, parents have to pay out of pocket if they want therapy that treats their children with respect. As a result, only wealthy families are able to afford relationship-based interventions. Lower income families are forced to put their child through government approved, Skinner-style behavior modification.

Lynn Koegel
Clinical Director of the Koegel Autism Center, University of California, Santa Barbara

How early can we intervene? We did a study showing that we could do modified PRT [Pivotal Response Treatment] as young as maybe four months. But people are mixed in the field over whether you can really give a firm diagnosis at that age. But there are several studies showing that it’s helpful to have early intervention (meaning under 18 months). By two and a half, kids are really far behind their peers. Little babies also don’t seem to need as many hours a week, so the parents are pretty involved and can do a lot of the interventions, whereas when they get older, parents lean toward more therapist hours, so it could be cost effective for everybody if we could intervene early.

CO-OCCURRING CONDITIONS

Gwen Kansen
Writer, diagnosed with Asperger’s

Not everyone with autism has trouble with sleep, but it’s really, really common that either we don’t sleep soundly enough or we keep waking up through the night or we sleep too much or have insomnia. Not everyone has that issue, but if you do, it causes trouble because energy can be a problem, too, which may or may not be related to sleep. Then if you don’t get enough sleep, then you become less organized and more awkward. I always do better when I get sleep.

Mary J. Baker-Ericzén
Associate research scientist & clinical psychologist, CASRC, Autism Discovery Institute; Rady Children’s Hospital

There are extremely high rates of co-occurring anxiety and depression. It’s a very important part of what’s impacting them, but there’s very little service delivery focused on that and it’s not ever accounted for in our traditional ABA intervention models. Here in San Diego, our research and clinical programs are developing executive functioning programs to really address that deficit area in teens and adults. Driving anxiety is one particular area of anxiety that’s really impacting adults. In California, if you don’t drive, you really can’t get around. There’s terrible public transportation and everybody is very reliant on cars. So now we’re developing a program to reduce driving anxiety for teens and adults on the spectrum.

About the Author

Kimberly Stephens and Joanne Ruthsatz Ph.D.

Kimberly Stephens and Joanne Ruthsatz, Ph.D., are co-authors of The Prodigy's Cousin: The Family Link Between Autism and Extraordinary Talent
 

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