I just returned yesterday from a five-day speakers’ conference and am blown away at the uplifting environment and the friends I met. I was actually a little reluctant–okay, a lot reluctant–to get back to “the real world.” But I promised you a month’s worth (perhaps more) of these posts, so back I am. Today’s topic is autism.
I saved autism until now for a couple of reasons. First, because it’s a highly complex disability–which most are, actually, but this one is more so in my humble opinion. Second, because it is so prevalent right now. Awareness, research, and increased incidence of autism have made it easier for people to educate themselves if they choose. But when educating ourselves about autism or any other disability, we have to be careful with our sources. And with autism in particular, there’s a lot of conflicting information out there. I am going to do the best I can to give you basic, trustworthy information. So here we go.
What is autism?
The very definition of autism is complex. A lot of people don’t even use the word “autism”; they instead use “autism spectrum disorders” or ASD. This is because autism can encompass so many different types of abilities and disabilities. According to autismsciencefoundation.org, autism is “a brain-based disorder characterized by communication challenges and restricted, repetitive behaviors, activities, and interests.” The Center for Disease Control considers autism a “developmental disability” that can cause “significant challenges” in communication, socialization, and other areas. It is important to note that, while some cases of autism cause cognitive or mental disabilities, autism itself is *not* a mental disability. Many people with autism have average, above average, or gifted IQs and can function quite well cognitively.
Autism is not considered a classical physical disability either, although some people who have autism do experience physical manifestations. For example, some people with Asperger’s Syndrome, which is considered an ASD, may have coordination problems. “Stimming,” or the repetitive motions and behaviors some people use, could be considered a physical symptom also. Stimming can be anything from swaying or rocking, to clicking a pen, twisting your hands, or repeating words (echolalia). Stimming should be considered a natural part of autism, not a “behavior” that needs to be punished out of a person. (Please note that stimming can be curbed; if it is violent, it should be. But that process should be gentle and take into account the whole person).
How long has autism been around?
Like many if not all disabilities, it’s probably been around forever, but it was first identified and studied circa 1943, thanks to Dr. Leo Kanner. Kanner’s research involved 11 children who, though they didn’t seem to be interested in other people, were highly interested in the environment around them.
Autism gained more publicity in the ’60s and ’70s, partially thanks to so-called experts who blamed parents, especially mothers, for the incidence of it. Mothers of kids with autism were disparagingly called “refrigerator mothers,” and children with autism were regularly institutionalized, shut away from society and life. Thanks to pioneers like Temple Grandin and her mother, as well as increased understanding, autism is now being seen in a more positive light, but it is quite a slow process. That’s why advocates, teachers, attorneys, and others are here.
How common is autism?
The last statistic I encountered was about 1 in 88 births, according to the CDC. According to the Autism Science Foundation, autism is also 4.5 times more likely to affect boys than girls. However, research indicates autism’s prevalence may increase in coming years. In fact, some people with autism believe that it isn’t a disorder at all; people with it simply have a different brain makeup. As in, people without autism have PCs; those with it have Macs. Thus, the people who subscribe to this view think autism will someday be a “new normal.” I’m somewhat inclined to agree; in fact, I think that might be a very good thing.
Are there classical features?
No. In fact, one of the worst things you can say to or about a person with autism is, “You don’t look autistic” or “But you’re so normal!” I’d like to reiterate that trying to define disability by looks alone is extremely harmful, even if classical features exist.
How do people with autism feel about people-first language?
I wanted to include this part because I’ve seen many responses. Many people actually refer to themselves as autistic or “autistics” or “autists.” They believe autism is an organic part of their identity, so to them, saying “person with autism” is to deny who they are. I respect that completely. Since this is a person-first language blog I will continue to say “people with autism,” but may use “autistic” at various points.
Can people with autism be independent?
As with all disabilities, it completely depends on the person. Ironically enough, persons with high-functioning autism (HFA) may have the hardest times becoming independent because, while they are highly intelligent, basic things about the environment trip them up. For example, an autistic person may have an encyclopedic knowledge of forensics and be able to work as a police detective in theory–but organization, overstimulation in the workplace, and other factors make that difficult.
This does not mean autistic people can or should only be consigned to menial jobs and supervised living. As with other disabilities, people with autism should be seen and defined by their names, their strengths, and what they can give to the world. Individualized attention and services that work with the whole person are desperately needed.
Should we use “functioning labels” when talking about autism?
This is a tricky one, because talking in terms of function helps us to understand different types of autism. However, I personally wish we could stop using “functioning labels” like high- or low-functioning for everybody, even if these terms are technically correct. Why? Because we don’t use them for TAB people (we don’t say, “She’s a low-functioning driver because she can’t parallel park.” Also, because how you “function” changes from day to day and situation to situation. The Simon with autism who gets excellent math grades and loves anything to do with animals, is the same Simon who may stim or scream when overstimulated.
Myths and Facts:
Myth: People with autism cannot show empathy/are selfish/turn out to be serial killers.
Truth: Oh, do I EVER hate this myth! It exists for many reasons; for example, some people believe Adam Lanza, the shooter of Newtown, CT, had some form of autism. Also, the word “autism” contains the stem “aut,” meaning “self” (as in, automobile, autobiography). For that reason and others, many people assume autistic people cannot and will not empathize with others.
The truth is, people with autism can and do show incredible empathy; in fact, many autistic people may empathize too much. In empathizing too much, they may convey an attitude of, “It’s all about me,” but this is NOT what is intended.
Myth: People with autism are not social.
Truth: People with autism often find it harder to socialize with peer groups. Sometimes this can be because of specialized interests, and sometimes it’s because they can’t read some social cues. However, autistic people can socialize well if given your time, empathy, and patience. Some autistic people are actually very social, to the point of extraversion, but may find certain cues or phrases like idioms confusing.
Myth: Girls don’t really get autism.
Truth: I frequent a lot of web pages that talk about the struggle of autism as experienced by women and girls. It is true that females are harder to diagnose than males. This can happen for a lot of reasons, but it’s often because women and girls are better “actors” than guys. That is, girls and women will observe peers and learn to imitate their social cues and interactions to fit in. Boys do this too, but may not be as proficient at it. Also, girls with autism tend to have specialized interests like dolls, books, or fashion. These are things a lot of typical girls like, so unless you know the particular person well, those interests tend to “blend in.” The same cannot always be said for boys, who may have interests in dinosaurs, trains, Medieval armor, etc. These interests are less common, and boys may tend to memorize and repeat more information about them than girls. However, girls do get ASDs and should be given the support they need to live with them.
Myth: Autism is a tragedy.
Truth: Unfortunately, there are many, many people who still believe this, courtesy of expert opinions and organizations like Autism Speaks (which does not speak for me, nor do they speak for many other autistics). Parents who have autistic children often picture worst-case scenarios of people who will need 24-hour care, never socialize, and never mentally leave toddlerhood. While this sometimes happens it is not the norm. People with autism can and do lead happy, significant, and fulfilling lives.
Myth: If my child/teen/loved one with autism is low-functioning, there is no hope.
Truth: There is always hope. Your love and tenacity will make a big impact in this person’s life. This person does love you, even if he or she cannot say it. Hold onto that. Seek out services and individuals who will respect you and your loved one, and treat him or her like a person while helping you deal with the ramifications of autism.
Myth: X causes autism.
Truth: I don’t care what you replace that X with. There are a billion different theories regarding what causes autism, from vaccines to milk to breathing wrong. None of these have been conclusively proven and studies regarding them have often been harmful (ex.: vaccine studies, although I am not here to talk about the vaccination debate at the moment). Get off the autism cause bandwagon and just befriend and support those living with it.
Myth: X cures autism.
Truth: There is no current cure; many autistics don’t want one, and we need to respect that. We also need to beware of information on abusive cures, such as bleach enemas. (Yes, some parents have given their children bleach enemas in hopes of curing autism!) You cannot “therapy” autism away. You can’t spank it away. You can’t cure it with a diet or exercise regimen. It’s just there. Embrace autistics as they are, instead of trying to “fix” them. Autism is not the end of the world–but constant cure efforts could severely impact their world. Let’s instead make the world a good place for autistic people to live and thrive.