My attitude toward having autism is, in general, "I don't really mind being autistic." That is, it's part of me, part of my normal life, part of my outlook and experiences. Autism can be frustrating, annoying, painful, enjoyable, or interesting--much like life in general.
This often sets me at odds with people who see their own autism as a curse or a tragedy. They are unhappy, and they attribute their unhappiness to having autism. The only way to become happier, they believe, is to somehow no longer be autistic. If they believe a cure is possible, they may be spending their time trying different mainstream or alternative methods to erase their autism. If they don't think it's possible, they may take the attitude that their life cannot be worthwhile until someone invents a cure to give them normalcy.
In social psychology class we studied happiness--what makes people happy, and why they may not be happy. Interestingly, your life circumstances affect your happiness much less than you might think. For example, once you have enough money to live on, it's not whether you're rich that determines your satisfaction with your economic status--it's whether you perceive yourself as well off relative to those around you. People consistently overestimate how unhappy they would be if something bad happened to them. In the realm of disability, both laypeople and professionals significantly underestimate the quality of life that disabled people report having.
So is it really your autism making you miserable--or are there other things in your life that are causing stress, unhappiness, pain, or impairment? I've seen a lot of people blame things on autism that are probably due to other things in their lives. The problem with doing this, is that autism is a stable, life-long condition. If you blame something on autism when it's due to some other, changeable circumstance, you could be overlooking things that can be changed.
Here are some of the possibilities...1. Social anxiety disorder/social phobia; avoidant personality disorder.
Makes sense that autistics are more prone to these disorders, which have in common a fear of rejection, a fear of social interaction, and a general tendency to expect mistreatment and ostracism.
These traits are traits of social anxiety disorder or avoidant personality disorder--they are not autistic traits:
- Being anxious in social situations; being anxious when you think about social situations.
- Avoiding social situations by being alone even when you want to be with others, or by withdrawing mentally or physically (to the edge of a room, for example).
- Fearing rejection, ridicule, and criticism.
- Worrying about other people judging you.
- Physical symptoms of fear while in social situations.
- Interpreting others' neutral communication as negative, signs of criticism or rejection.
Social anxiety disorder and related issues can be treated. You don't have to live in fear. Yes, autism certainly predisposes us to these disorders, because we have probably experienced real rejection--but social anxiety disorder is not a part of autism.2. The effects of stigma, discrimination, and prejudice.
Let's differentiate these: Stigma is the labels society puts on you for belonging to a group. Prejudice is when people have an unwarranted negative belief about a group you belong to; discrimination is when they act on it. As autistic people, we are often exposed to prejudice against disabled people. Many of the things people attribute to being autistic are actually things that happen to people who are a part of stigmatized minorities. For example, these are not a result of autism, but a result of prejudice:
- Being refused or being fired from a job; being passed over for opportunities at school; facing discriminatory housing practices.
- Being mistreated, for example, domestic abuse or bullying; receiving little or no assistance when you ask for protection from such incidents; being blamed for instigating the violence against you
- Fearing attack--physically or socially.
- Being distracted by the knowledge that people think autistic people are less competent. This distraction can lead to poorer performance on tasks that are thought to be hard for autistic people (but awareness of the phenomenon can help cancel it out). For more information, research "stereotype threat"
- Internalizing ideas about autistic people as being worth less than NTs, being less competent, being tragic or broken, etc. Even if you know these ideas are illogical, hearing them over and over can convince you to believe them emotionally--and your emotions don't easily listen to reason.
- Feeling defensive; expecting people to dislike or reject you
- Being "in the closet"--deciding to pretend to be neurotypical to avoid the effects of prejudice
- Rejecting the idea that you are autistic; or, redefining your autism as "not a disability", in order to disassociate yourself with the prejudice relating to autism or to disability
- Keeping to "your own kind"--feeling unable to, or unworthy of, interacting with neurotypicals; avoiding prejudice by sticking to interacting only with people who are in your own group
- Looking down on people you perceive as being "more autistic" than yourself
The solution here is to fight against prejudice--first in your own mind, and then in your immediate society. Notice that some effects of prejudice don't just happen because other people are biased against you, but because you are biased against yourself. Prejudice as a social problem is being successfully addressed by many groups, from blacks to gays to women. Disabled people have their own civil rights movement, too. In order to fight prejudice, you have to constantly check your own beliefs, and the beliefs of others, against logic. Many of us will find that we have been bombarded with prejudice so often that we have internalized it--but spend time getting to know the people you feel are different from yourself, and you will become more comfortable. Learn to appreciate differences instead of fearing them. People who declare you inferior are wrong: Dare to question their assumptions.3. Physical illness.
Have you ever read one of those testimonials from someone who says they were autistic and things were terrible and then they went on this special diet and suddenly they're neurotypical? There's no scientific proof that special diets work, but every once in a while, somebody really improves when they change their lifestyle. Why?
Do you think and learn better when you are healthy, or when you are sick? What about when you're well-rested, versus tired? Would a nutritional deficiency hurt your ability to think? All of these factors affect your cognition--not just autism. And, because we're autistic, we're often more sensitive to our environments, both our internal physical states and the sensory input around us--meaning that for an autistic person, a simple headache or indigestion can be a one-way ticket to shutdown.
These signs of physical illness are often blamed on autism and can make it harder to cope with autism:
- Poor digestion, food allergies, or nutritional deficiencies related to a diet that does not match your nutritional needs. Ironically, this includes malnutrition related to various special diets that are supposed to cure your autism.
- Lack of concentration, moodiness, and impaired cognition caused by sleep problems.
- Poorly controlled epilepsy, leading to seizures (obvious or subtle) which disrupt your thinking.
- Untreated pain, which you may not be able to communicate to others, or may not be able to detect, or which may go untreated because you do not react to it as a neurotypical would, or because your reaction is blamed on your autism
- Lowered cognitive ability related to stress from an illness.
Treating physical illness may not cure your autism, but it will improve your general physical health and increase the amount of energy you have to deal with being an autistic person in a non-autistic world. A well-managed chronic illness is much less of an impediment.4. PTSD; after-effects of abuse, neglect, institutional maltreatment, or bullying
Some of the problems we blame on autism are not due to autism at all, but due to the experiences we've had in life. One of the disorders easiest to mistake for autism is the withdrawn version of reactive attachment disorder--a disorder that comes from chronic early neglect or abuse that keeps a child from forming secure bonds to caregivers. It's no wonder that the effects of mistreatment can be mistaken for autistic traits. For example:
- The belief that you have no future--a PTSD trait that may express itself as the idea that your disability means you have no future
- Being easily startled and unusually sensitive (can be an autistic trait; can also be related to hypervigilance)
- Poor relationships with others; inability to trust others
- Anger; irritability--can be mistaken for meltdowns
- A desire for revenge against abusers
- Ignoring your own needs in favor of others' desires
- Running away from home or "wandering" away from an abusive situation
- Social isolation
- Low self-esteem; the belief that you are worthless and deserve to be mistreated
- Mistrust of doctors and medical personnel; inability to benefit from psychological treatment because of previous mistreatment
Recovering from the effects of abuse may be difficult, but possible--and you're probably a lot stronger than you know. Sometimes, especially if you're autistic, you don't even understand that the people who hurt you were wrong to do it--and, in the case of institutional abuse, sometimes the rest of the world doesn't understand how wrong it was and how much you were hurt. Identifying the abuse as wrong is an important first step. People react to abuse in different ways; some are very resilient and not very badly affected, while others will deal with the fallout for a lifetime. The important thing to remember is that being autistic does not make the abuse justified--it just made you an easier target.5. Depression
Unlike psychotic disorders, depression doesn't usually make you lose your ability to think rationally. What it does is much more insidious: It slightly skews, slants, colors your impressions of the world. You still see the same world as everyone else, but you see it in a more negative way. You lose the ability to hope for good things. You see problems as unsolvable and bad situations as inescapable. Physically, you have less energy (or an excess of uncontrollable nervous energy); you sleep poorly or too much; you feel slowed and tired. Depression is extremely common--it's the most common mental illness in the world--and autistic people experience it even more often than neurotypicals do, perhaps because our lives contain more stressors. If you are depressed and autistic, you may blame these traits on autism:
- The belief that your autism means your life is a dead end
- Seeing yourself as incapable, incompetent, and trapped
- Seeing yourself as a burden to others
- Seeing yourself as worth less than others because of your disability
- Poor concentration, scattered thoughts, disorganization
- Sleep disturbances
- Being short-tempered and irritable; exploding at the slightest provocation
- Being easily tired and constantly exhausted (for example, less able to tolerate sensory or social overload)
- Social withdrawal
- Attributing failures to your own character or ability, rather than to circumstances
- Being unable to see solutions to the problems you face; for example, believing that prejudice is permanent and unchangeable, or that autistics will always be rejected
Depression is a treatable mental illness. It's also episodic--that is, it comes and goes. It doesn't last forever; things get better. The trouble is, if you're autistic and depressed, that you are particularly likely to assume that the symptoms of depression are symptoms of autism--that your negative perception of the world is a correct perception of the hopeless life of an autistic person, rather than the result of depression coloring your perspective. Once you know what depression is and how it changes the way you think, though, it becomes a little harder to fall victim to those deceptions.6. Buying into traditional ideas of success.
How often have you heard someone mourn over an autistic person's "will nevers"? He'll never graduate from high school, or never marry, or never live on his own, or never have a job, or never be popular... Well, I'm never going to become a professional skydiver, work as a lumberjack, or join the military; I'm incapable of doing those things. And yet I don't mourn that loss. Why? Simply because I don't value those things. I don't base my idea of a fulfilling life on them. But some people do. Symptoms of this problem include:
- Desiring something because you seem to be expected to desire it; for example, wanting to be part of the popular crowd because that's considered superior, even though you don't have common interests with those people
- Having standards for success that include living a traditional life--for example, marrying and having a well-paid job
- Gauging your success by how well you match the stereotype of a successful person, rather than asking yourself whether you have fulfilled your own goals for your life
- Creating goals for your life based on what you "should do", rather than what you want to do; or, not even knowing what you want
- Wanting to date or have a significant other not because you want to connect with someone, but because you see it as a status symbol or a sign that you are socially successful
- Feeling ashamed of yourself when you do something in an atypical or non-traditional way
Autistics can be traditionalists. We do like to have nice concrete definitions for things, black-and-white categories and sets of instructions. So when we set out to do something useful with our lives, sometimes we don't ask ourselves what, exactly, that means--we just go with the majority opinion. We assume that because other people want something, we must want it too. We assume that because something is supposed to make others happy, we can't be happy without it.
So when we claim we're unhappy because of autism, is autism really what's making us miserable, or is it something else--something that can be changed? We live in a world where people assume that if you're disabled, your primary function is to sit around and wait for a magical cure that makes your life suddenly meaningful. But people with disabilities know that life is meaningful, intrinsically, with or without a disability. Don't buy into the idea that if you're autistic, anything negative in your life must be due to autism and is thus unchangeable. That's bunk. Take action. Take care of yourself. Don't buy into the ablist beliefs your culture tries to push onto you. Live your own life; find happiness on your own terms.