Two Communities Divided by One Word

The idea of “the autism community” sounds good. But there isn’t one. There are at least two autism communities—perhaps more. The word “autism” applies to both, but that word has multiple meanings, dividing the groups that use it. To illustrate, let’s consider two main groups. These are not exact, and you can think of other groups; this is just for illustration. We can call these the Autistic Identity group and the Autistic Disorder group. People in these groups have very different needs, and they all deserve to have their needs met.

One use of “autism” is as an identity. This kind of autism is considered just a normal difference, like a personality type, not a disorder. Sometimes it’s called a social construct, where the only problem is that the rest of society doesn’t properly understand and accept those with the identity as they are. You can identify as Autistic without having a formal diagnosis of a disorder. Those who identify as Autistic often say that what they need is acceptance and connections. People in this group can and do advocate for themselves. Many write eloquent articles explaining their experiences and beliefs, and you can easily explore their articles to learn more.

A different use of “autism” refers to a serious neurodevelopmental disorder. This was the original meaning, and it’s how Bernard Rimland, founder of the Autism Society, used the term. One of three essential criteria for having Autistic Disorder is having “markedly abnormal or impaired development” in communication. That is, having a limited understanding of what others are saying and a poor ability to express oneself. That’s not the same as lacking speech. Some people with this disorder can talk or write yet can barely communicate. The 2013 introduction of Autism Spectrum Disorder in the DSM-5 official diagnostic manual changed the name and muddied the waters, but the reality did not change.

People in the Autistic Disorder group cannot tell their own stories, cannot advocate for themselves, and cannot take care of themselves. Many appear to be in great pain or distress, but they cannot express or explain what is wrong. They cannot even tell you where it hurts. It can be hard to find good information on what life is like for people in this group and for the people who love them. For those who don’t have extensive personal experience with this, it is very hard to understand the reality of Autistic Disorder. Families tend to keep the details private. Searching for “severe autism” or “profound autism” will give some information. Caring for people in this group can be extremely difficult, and it is an understatement to say that they need intensive care—all day, every day, without break, without end. The only people who can advocate for those in the Autistic Disorder group are their parents, close family members, and those who know them well. People in this group—and their families—desperately need much better treatments than we have now. Moreover, they will need society to take care of them when their parents can no longer do so.

The reality is more complex than two distinct groups. There may be any number of other groups, and groups can overlap. But the principle holds. Pretending that there is one meaning of “autism” that covers everyone described by the word is a major problem. If “autism” means the identity, while it also means the disorder, it cannot have only one meaning. Trying to juggle the multiple meanings while pretending they are the same causes offense to those in the Autistic Identity group. It causes very real harm to people in the Autistic Disorder group and their families.

A good solution might involve using different words to mean the identity and the serious neurodevelopmental disorder. While waiting for a great solution, we all need to be clear which kind of autism we are talking about. And when we hear someone say something about autism that doesn’t seem right or might even seem offensive, we need to remember that they might be using “autism” to mean something different from how we use it.