One of the topics that comes up often on online autism forums is whether and how to tell others about one’s autism. The naïve believe it will make an enormous difference in their relationships. Recently, I mentioned to someone I know that I’ve come out to a few new people lately, and she fell immediately into this assumption. She beamed about how wonderful this must have been for me. How do you mean? I asked. To feel so much support, she said, now that everyone understands you. Oh, I said. That’s not really how it works.
Typical responses vary from people who are kind and mean well. Many just thank me for sharing the information, and that is fine. It’s not dissimilar to one person telling another that they have diabetes or a child who has profound hearing loss. Most people have some kind of personal or family challenge that they are dealing with or have dealt with. Sometimes people ask a question or two, and that is also fine. I do not have any kind of reticence about discussing autism. I am fortunate to have received profound cognitive gifts from my neurology. This is not always the case with autism, but it has made me feel less like I have a disability and more like I have a sometimes fortunate, sometimes unfortunate difference — I could not have one without the other, so I accept them both. Besides which, autism is not just a disability diagnosis, or a difference in cognitive and emotional style, but an identity. I belong to the autism community and am a parent-advocate for my son. I welcome the chance to explain, when that is invited.
There are moments, however, when even kind and well-meaning people do not realize their initial responses are problematic. They haven’t been immersed in the rhetoric of the autism community, but have encountered discussions of autism in their personal lives or in the media that are partial. I don’t take these more problematic responses personally, but I’d like to discuss them here so that others who encounter them might be better prepared to address them. Learning what responses are problematic and why might also help non-autistic people to answer with greater sensitivity when learning about someone else’s diagnosis for the first time .
These initial responses have all been said to me.
Didn’t they get rid of Asperger’s?
Sometimes, when I tell someone I’m autistic, I mention that I’m at the higher end, like Asperger’s. Their well-meaning question might suggest that they think Asperger’s has been ‘disappeared’ as if it never existed, as if high-functioning autism were a fad diagnosis that has since been debunked. High-functioning autism has never been an actual diagnosis. It has been used colloquially to describe people like me who have a medical autism diagnosis but no cognitive impairment or language delay.
Asperger’s was a separate diagnosis until the revision of the DSM in 2013 (and it is my son’s diagnosis, since his was assigned in 2009), when autism spectrum disorder was created to encompass a range of pervasive neurodevelopmental disorders that include Asperger’s, autism, and PDD-NOS (pervasive developmental disorder not otherwise specified). Experts made the change out of a sense that this was a more accurate, scientific, and helpful way to describe the range of disorders, which can be difficult to differentiate from one another. So, as well-meaning as this question may be, it is similar to saying, Wasn’t that something people just made up? Don’t we know better now? The answer to both implied questions is no.
Here is how ASD is now defined:
“DSMV 299 Autistic Disorder (also known as Autism Spectrum Disorder)
Must meet criteria 1, 2, and 3:
- Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:
- Marked deficits in nonverbal and verbal communication used for social interaction:
b. Lack of social reciprocity;
c. Failure to develop and maintain peer relationships appropriate to developmental level
- Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:
- Stereotyped motor or verbal behaviors, or unusual sensory behaviors
b. Excessive adherence to routines and ritualized patterns of behavior
c. Restricted, fixated interests
- Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)
The social and communication deficits used to diagnose autism spectrum disorders with the DSM-IV have been merged into a social/communication deficit domain. It is important to note that a statistically significant delay in language will no longer be needed in order for an individual to be diagnosed with autistic disorder using the DSM-V.
To help differentiate between what was once Asperger’s Syndrome, PDD-NOS, and autistic disorder, the American Psychiatric Association (APA) will propose severity criteria.”
Isn’t there a lot of over-diagnosis of autism?
Maybe. There’s a lot of self-diagnosis going on, certainly, as people hear about autism in the media and wonder whether it applies to themselves or someone they know. I understand people who self-diagnose or who are autism-curious as being on a life journey. There’s nothing wrong with asking the question and exploring. How else would they come to an understanding of the traits they associate with autism or ever come to seek a medical diagnosis? But it’s important to leave a question mark until the self-diagnosis is confirmed by an expert, and it’s important to find an expert, which can be difficult for adults.
Testing for adults has not been standardized, as it has largely been for children, and it takes a particular expertise—even more so when testing is done for a woman. When Asperger’s and autism were first defined, they were understood as male phenomenon, and they can manifest somewhat differently in females. Testing should also be rigorous, not the result of a short conversation. It should include empirical testing as well as questionnaires administered to the person under diagnosis and someone who knows that person very well. Not all autisms are exactly alike. There are clusters of associated traits, both cognitive and physical, but the definitional traits remain the same and have to be clinically validated from early childhood forward; autism is a neurodevelopmental difference, after all. It does not spring on someone in their adolescence or later.
Why are so many more people getting autism these days?
Experts can’t say for sure, but most suggest that there aren’t more autistics than there were historically. Our criteria for diagnosing autism have broadened, so there are more people that we consider to be autistic than would have been considered autistic in the past. That is, we are now more aware of people who have autism than just those with the “classic” form that is associated with cognitive and/or language impairments. Whether there is value in recognizing a neurodevelopmental relationship along such a broad spectrum of severity is probably a more interesting and useful question. Since our culture has come to value an extroverted ideal at work and school (Susan Cain’s argument in Quiet), I would argue that there is. Autistics not only tend to be introverted, but unable to achieve conformity to extroverted ideals. We just seem a bit off, even when we mean to be friendly.
As for our numbers, researchers continue to find evidence for the importance of genetic inheritance with autism, or autisms (see here, for example). There do seem to also be some de novo, or single-generation, incidence of autism, but these don’t appear to be the majority of cases.
Then, too, with more attention given to autism by doctors, schools, and the media—it has become a kind of ‘cause of the day’ for kids, especially in helping them to succeed in school, as once was the case with ADD / ADHD—the more we find that people are seeking diagnosis or being recommended for it, children by teachers and other professionals at school and older people by realizing that younger relatives’ diagnoses might mean something for the difference they have noticed in themselves all their lives. My son’s first grade teacher recommended that we get him diagnosed. She didn’t use the word autism, but she felt something was different and she was concerned for him. During the long process of getting our son diagnosed, I was floored to find that his diagnosis fit me just as well. Five years later, I sought my own diagnosis. We added two more to the growing number of diagnoses, but that does not mean that these diagnoses are without merit in their basis or without benefit to us.
When some autistics hear this question, about whether there are more autistics now than in the past, they hear an implication that autism is a modern invention, and this echoes other forms of autism denial. It is certainly true that whatever presented as autism in the past was understood as something different and described in other terms, whether that was eccentricity or madness or unsociability or mania or idiocy. As a culture, we have agreed to treat autism as a medical condition, which is at once more gentle, and yet again continues to be an issue for some of us who do not wish to be pathologized in our difference.
When I mention a challenge I have as a result of my autism, such as my extreme dislike of being touched by non-intimates or by surprise, my sensory sensitivity (sound, heat, bright light, etc.), or the stress that certain forms of social interaction cause (e.g., unstructured or casual, those requiring conflict resolution, those placing attention on me rather than my work), I am sometimes told, Well, lots of people have an issue with x or X stresses me out, too.
Experts and advocates sometimes call autism a “hidden” or “invisible” disability. Because others can’t see it, like a person who requires a wheelchair, they are often unaware of it. There is nothing wrong with that; it is easy for high-functioning autism to go unremarked during casual contact. However, when people do become aware of it, they often assume the disability to be the result of personality or preference. That assumption is problematic.
We don’t assume someone in a wheelchair prefers not to walk, when the cause of their being in one is explained. The same should be the case with autism. We should assume that there are certain hardwired tendencies, such as sensory sensitivity, that are extreme enough to be disabling and that require our consideration.
Take one of my son’s classroom teachers, for example. Even knowing he has Asperger’s, she told me he was doing poorly in his learning group because he does “not prefer” working with others. Yes, I told her. He is autistic. He does not prefer it, and he cannot be taught to prefer it. He can be taught how to do it better, but will only be able to tolerate limited amounts of interaction. She had been assigning group work for both periods of her course every day for the entire school year, and wondered why he couldn’t overcome his “negative attitude.” He receives no additional supports for group work, and has had no ability to opt out – that is, until we recently revised his school plan to allow for that because he had become so stressed he no longer wanted to go to school.
Similarly, in order for the stress from certain forms of social interaction to be disabling, it must be so stressful that it causes dysfunction or harm. It is not the normal kind of stress that someone feels in a challenging social situation; it is similar – and not outside of the scope of human experience – but there is a significant difference of cause, degree, and effect. To suggest otherwise is to mistake a disability with a normal challenge. Again, one would not do this with visible disabilities; the same consideration should be given to invisible ones.
A particularly sensitive autistic could interpret this sort of response as expressing disbelief or denial. They might understand the person they’ve told as saying, I don’t really believe you’re autistic. Everyone feels that way sometimes or That’s not really a big deal. Lots of people have that experience instead of something more kindly meant such as Yes, I feel that way sometimes, too–I can sympathize or You don’t seem disabled–I find you to be a very capable person.
I know a child who is autistic, but he’s really autistic.
When I hear this, I always feel a surge of sympathy. To know a child who has classic autism is to long for that child to have the best life possible and to understand that his (or her) family often deals with a profound level of stress as they negotiate with financial demands and support services. I would never compare my challenges, or my son’s, with what people and parents with more profound autisms must go through.
A particularly sensitive autistic could understand this well-meaning person as suggesting that he or she does not really have autism, or an autism worth noting, because it is not the same as “classic” autism or does not come with the same severe challenges. It is important not to seem to be comparing when what one seeks is understanding of the observed difference–If these are called the same thing, why do they seem so different? That is a reasonable question. Autism presents as a spectrum of severity, and this is the vector by which autisms are now differentiated.
Autistics also share clusters of traits, which are not definitional (they don’t lead to a diagnosis of autism but are often found to co-occur, although not all together in the same person). These trait clusters include non-verbal learning disability, verbal disabilities, gross motor and fine motor challenges, weak core muscle development, digestive problems, obsessive-compulsive disorder, and more. Again, it is the definitional traits, the core traits, that unify the diagnosis, even if they are not all experienced at the same level of severity. The level of severity is important, and can make a profound difference in lived experience, but it should not be used to differentiate between autism and not autism.