Autism and Aging

Autism in a Developmental Perspective

There are books we read in order to learn something new. And then there are books we read because they give words to something we have already lived, but not fully understood.

For me, Nils Kaland’s book Autism and Aging in a Developmental Perspective belongs to the latter category. It is not only about autism as a diagnosis. It is about a life course. About children who become adults. About adults who grow older. About people who may only late in life come to understand why life has required so much effort.

For a long time, autism has mainly been understood through the child. The autistic child in kindergarten. The pupil in the classroom. The young person who struggles socially. The parents who seek help. The school that is expected to provide support. All of this is important. But it is not the whole story.

Autistic children do not disappear when they become adults. They become adults. They enter work, family life, responsibility, loss, failure, joy, grief, and illness. They grow old. Some do so with a diagnosis. Many do so without one. Throughout life, they may have been understood as difficult, odd, quiet, intelligent, rigid, sensitive, asocial, overly conscientious, or simply different.

Only late in life may another word become visible: autism.

Not as a verdict. Not as an explanation for everything. But as a language for something that has been there all along.

This is what makes aging and autism such an important subject. Aging is not only about the body growing older. It is also about old life strategies no longer working in the same way. What one previously managed to compensate for may become more difficult. What one previously kept hidden may become more visible. What one previously carried in silence may become too heavy.

Many autistic people learn early to mask. They learn to observe others. To imitate. To smile at the right moment. To answer just enough. Not to seem too eager. Not to seem too tired. Not to ask too directly. Not to withdraw too abruptly. Not to show how strongly light, sound, smell, unrest, and social unpredictability affect the body.

Masking can be a form of social survival. It can make it possible to pursue education, work, take responsibility, lead meetings, give lectures, participate in family life, and function in an ordinary everyday world. Without the mask, life might have become more difficult. But the mask has a price.

That price is often first felt in the body.

One comes home and collapses. One becomes irritable without wanting to. One needs silence. Darkness. Rest. A restart. Not necessarily because the day has been bad. It may be because the day has been ordinary.

For other people, an ordinary day may be just that: ordinary. For an autistic person, the same day may have consisted of a long series of small adaptations: conversations, sounds, faces, interruptions, lights, choices, expectations, pace, irony, small talk, and unspoken rules. Each of these may seem insignificant on its own. Together, they can empty a person.

As one grows older, the ability to mask may diminish. Not necessarily because the autism becomes stronger, but because the available energy becomes less. The body tolerates less strain. Sleep may change. Hearing, vision, balance, and illness may play a role. Retirement may remove external structure. The loss of work may also mean the loss of role, rhythm, and identity. What previously held life together may no longer exist in the same way.

Then autistic vulnerability may become more visible.

This can easily be misunderstood. An older autistic person who withdraws may be interpreted as depressed. Someone who needs fixed routines may be seen as rigid. Someone who reacts strongly to sound may be regarded as difficult. Someone who cannot manage social interaction over time may be understood as rejecting others. Someone who asks direct questions may be perceived as rude. Someone who needs to be alone may be seen as lonely in a way they themselves do not recognize.

Here lies a major challenge for health and care services.

Elder care is often built around ideals of community. Shared meals. Shared activities. Shared living rooms. Shared rhythms. For many people, this can be good. For others, it can be burdensome. An autistic person may need community, but not necessarily in the form in which community is usually organized. They may need closeness without invasion. Companionship without noise. Predictability without coercion. Help without being overruled.

The best intervention is not always more social stimulation. Sometimes the best intervention is less noise. A clear message. A fixed time. A familiar person. A room to withdraw to. Respect for routines. The possibility of eating alone. The possibility of avoiding small talk. The possibility of being a human being without having to perform as someone else.

This is where autism and aging become a question of dignity.

Dignity is not only about being treated kindly. It is about being understood on one’s own terms. Not completely, because no human being can be completely understood. But well enough that help does not become a new burden. Well enough that difference is not automatically turned into a problem. Well enough that a lifetime of coping strategies is met with respect.

For those who receive an autism diagnosis late in life, the diagnosis can be painful. It can open old rooms. One may look back and ask: Why did no one understand this before? Why was I called difficult? Why did I have to use so much energy trying to be normal? Why did I believe that there was something morally wrong with me?

But the diagnosis can also bring peace.

Not a simple peace. Not a peace that erases the past. But a peace that makes it possible to read one’s life anew. One can understand the child one was with greater tenderness. One can understand the loneliness of youth. One can understand the exhaustion of working life. One can understand why one needed nature, silence, books, writing, rhythm, focused interests, and an inner room.

Perhaps one can also stop apologizing for everything.

In this sense, aging may become a form of liberation. Not because old age is easy, but because it may make it less necessary to pretend. One no longer has the strength for as much masking. This may feel like loss. But it may also be a truer way of living.

Perhaps the gift of aging is that it asks: What is truly necessary now?

Do I have to participate in everything? Do I have to answer immediately? Do I have to explain myself to everyone? Do I have to tolerate what others tolerate? Do I have to pretend that I do not become tired? Do I have to wear the mask even when my body says no?

For an autistic person, old age may become an exercise in discernment. What is responsibility, and what is over-adaptation? What is care for others, and what is self-erasure? What is necessary social life, and what is merely a norm I have tried to live up to? What is withdrawal, and what is rest?

This, too, is practical philosophy.

Practical philosophy is not only about grand theories. It is about how a human being can live truthfully, well, and responsibly with the conditions life has actually given. For the aging autistic person, this may mean finding a form of life in which one no longer uses all one’s strength trying to resemble others.

This does not mean withdrawing from the world. It does not mean giving up relationships. It does not mean turning autism into one’s entire identity. But it may mean living more honestly. More economically with one’s own energy. More attentive to the body’s signals. More reconciled with the need for silence.

To grow older with autism may therefore also mean becoming clearer to oneself.

It may mean understanding that becoming tired was not weakness. It was strain. It was not indifference to withdraw. It was regulation. It was not coldness to need distance. It was a way of preserving oneself. It was not wrong to need order. It was a way of creating safety in a world that often arrived too suddenly, too loudly, and too unclearly.

This does not mean that everything can be explained by autism. A human being is always more than a diagnosis. We are also history, family, work, love, grief, body, faith, nature, memories, and choices. But a diagnosis can still be an important light. Not a light that blinds, but a light that makes the contours clearer.

Perhaps this is especially important in old age.

For when life becomes shorter ahead of us than behind us, the need increases to understand what kind of life one has actually lived. Not in order to judge it. Not in order to explain it away. But in order to own it.

Autism and aging are therefore not only about services, assessment, and research, although all of these are important. They are also about life interpretation. About arriving late, but not too late, at a deeper understanding of oneself.

It is about being able to say:

I was not wrong.
I was not less human.
I was not without empathy.
I was not merely difficult.
I carried something others did not see.
I found ways to live.
Some of them cost too much.
Now, perhaps, I can live a little more truthfully.

When the mask becomes too heavy to wear, it may at first feel like defeat. But perhaps it is also a sign that the body no longer wants to live on false terms. Perhaps this is the quiet wisdom of old age: that we should not spend the final years of life hiding who we are.

Then the question is no longer how the aging autistic person can adapt to a normality that never quite fitted.

The question becomes instead:

How can life, the home, the family, services, and the community become spacious enough for a person to grow old without having to disappear behind the mask?

That is an ethical question.
It is a question of care.
And for some of us, it is also a question of life.