Fixing Autism May Be Unwise
When we talk about curing autism, the theoretical goal is to remove autism and turn the autistic person into someone indistinguishable from the NeuroTypical population.
What I call “fixing autism” is less ambitious. Instead of trying to remove autism, we change the autistic person just enough to make everyday life manageable. Sometimes this is necessary. The problem begins when making the autistic person easy to care for becomes the destination rather than the starting point. This issue is especially important for autistic people with intellectual disabilities, lower measured cognitive abilities, substantial adaptive difficulties, or other limitations that may make conventional employment difficult
Two Extremes
I have seen two very different approaches among parents.
At one extreme are parents determined to make their autistic child achieve greatness. I have personally seen autistic children pushed extremely hard into areas such as music and sport. Some became remarkably accomplished, even reaching competition or national-award levels, despite appearing to have little enthusiasm for the activity itself. There is something admirable about parents refusing to accept low expectations. An autistic child who would otherwise have been written off may discover abilities nobody knew were there.
But there is also a danger. If the parents’ dream becomes more important than the child’s own personality, happiness and limits, childhood can turn into a permanent training programme. Success may look impressive from outside while the autistic person experiences life mainly as an endless series of demands and effectively becomes their parents’ trophy.
At the opposite extreme are families who have effectively concluded that substantial independence is unlikely. Their priorities may therefore become very practical:
- learn to shower and dress independently;
- clean up after yourself;
- help with household chores;
- follow instructions;
- avoid creating unnecessary trouble;
- develop routines that make daily caregiving manageable.
These are useful skills. I am certainly not arguing against teaching them. But taken too far, this approach can produce a strange definition of the “ideal” autistic adult: docile, polite, conscientious, able to do housework, willing to follow simple instructions and requiring as little supervision as possible. In other words, we may successfully train someone to become easy to look after without necessarily preparing them to have much of a life of their own.
Housework Is a Life Skill, Not a Career Plan
Look at how an autistic child spends his time and you can often infer what kind of adulthood the adults around him are preparing him for. If enormous amounts of time are spent on housework and basic routines, but very little on discovering talents, learning economically useful skills, exploring possible work or developing genuine interests, something may be missing from the plan.
Housework is important because everyone needs some ability to look after themselves. But becoming exceptionally good at housework may have diminishing returns. Depending on circumstances, earning enough money to pay for occasional help may ultimately provide more independence than spending years trying to master every domestic task perfectly.
My experience of housework in Macau also taught me to recognise the work that had made my own activities possible. Outsourcing can be sensible, but the comparison must count the labour and cost rather than make them disappear because somebody else performs the task.
More importantly, the kinds of simple repetitive jobs that have traditionally been offered to people with limited qualifications cannot automatically be assumed to provide secure employment for the next several decades. Automation, artificial intelligence, changing business models and rising productivity expectations make the future uncertain. So I would be very reluctant to prepare an autistic child for a future consisting only of simple instructions and simple jobs.
The Middle Path
Fortunately, the choice is not simply between producing an autistic superstar and producing a permanently dependent adult. There is a Middle Path which asks: What kind of life can this particular autistic person realistically learn to sustain? That life does not need to impress anybody.
Consider an autistic person who is unlikely to succeed academically, dislikes crowded environments, struggles with office politics and will probably never flourish in a competitive corporate career. That does not automatically mean spending adulthood at home doing chores. Perhaps that person could learn horticulture, gardening, animal care, basic maintenance or small-scale farming.
With the right abilities, environment and support, he might eventually lead a relatively simple life doing useful work in surroundings that suit him far better than an office. He does not need to become a famous farmer. He does not need to win agricultural awards. He needs to become sufficiently competent to participate meaningfully in his own life.
For the right person, something as ordinary as growing vegetables, caring for animals, maintaining a garden, selling some produce and living in a quieter natural environment could be a tremendous success.
This is only an example. Farming itself requires particular physical abilities, resources and skills and obviously will not suit everyone. Another autistic person might find the equivalent Middle Path in baking, cleaning professionally, repairing things, crafts, logistics, landscaping, food preparation, digital work, a family business or some occupation I have not thought of.
The important point is that a simple life is not the same thing as a failed life.
A Win-Win Outcome
Parents have legitimate practical concerns about what will happen when they become old, sick or die. Ignoring this reality does not help autistic people. The best outcome may therefore be neither maximum achievement nor minimum burden. It may be finding a sustainable equilibrium where:
- the autistic person does as much as he reasonably can for himself;
- he develops skills that other people genuinely value;
- he contributes rather than merely being kept occupied;
- his work and lifestyle fit his actual abilities and temperament;
- necessary support remains available without doing unnecessarily for him what he can learn to do himself;
- caregivers are not expected to carry an impossible burden forever; and
- the autistic person gets a life that is recognisably his own.
That is a win-win situation worth aiming for.
Do Not Confuse Potential With Prestige
When I say that we should develop an autistic child’s full potential, I do not mean that every autistic child can become a doctor, lawyer, programmer, concert pianist or Olympic athlete. That would simply replace one unrealistic expectation with another.
“Full potential” is individual. For one person, it may mean university and a professional career. For another, it may mean becoming a competent farmer. For another, it may mean working several hours a week with continuing support. For somebody with very substantial disability, increasing communication, personal choice and participation in everyday life may itself represent enormous progress.
The point is that we should not decide too early how low someone’s ceiling is merely because teaching them is difficult.
Challenge Without Brute Force
Protecting an autistic child from every challenge can close doors. If a child is never entrusted with responsibility because responsibility may cause stress, he never gets the opportunity to learn how much responsibility he can eventually handle. If every lesson is permanently simplified whenever he struggles, nobody discovers whether patient teaching, a different method or more time might allow him to understand something harder.
But the opposite approach is equally foolish. Repeatedly forcing an autistic person through activities that overwhelm him does not magically eliminate autism. There are genuine intellectual, sensory, communication, executive-function and emotional limitations that cannot simply be bullied away.
Support and accommodations can therefore be essential. The goal should not be to remove useful support merely for the sake of appearing independent. The better goal is to distinguish between support that enables the person and doing things for the person that he could realistically learn to do himself.
Greatness is optional. A sustainable life is not. Autism should not be a reason to underestimate someone’s potential. Neither should autism become something we pretend does not impose real limitations. Where independence can safely and reasonably increase, encourage it. Where support remains genuinely necessary, provide it. Wisdom lies in knowing the difference.