Millions Live With Autism – Here’s What It’s Really Like

By Sanjay Shah

What’s it like to live with autism?

That’s a complicated question. “Living with autism” means more than being diagnosed with autism spectrum disorder (ASD), of course. Millions who can’t be placed on the spectrum nevertheless “live” with autism as parents, grandparents, siblings, aunts, uncles, teachers and friends.

Like the needs of all other children, the needs of kids with ASD change as they age. Their needs are situation- and environment-dependent, too. Let’s take a closer look at what it’s like to live with and support someone who has autism in three common situations: home, school and the post-secondary world.

Raising a Child With Autism

Every loving parent is heroic, but parents who raise children with ASD face special, often acute challenges.

The symptoms of autism are often apparent by age 2, but it can take longer for a formal diagnosis to be made, especially where adequate medical resources aren’t readily available. Once the condition has been diagnosed, parents are encouraged to:

  • Seek out education-based behavioral therapies, such as Applied Behavioral Analysis (ABA)
  • Explore biomedical treatments in concert with behavioral therapies and in close consultation with medical professionals
  • Pursue sensory therapies to help children manage everyday activity
  • Enroll in communication and speech therapy groups to improve social skills

It’s important not to take action with disruptive potential or with a substantial out-of-pocket cost without professional assistance. If you feel that you’re not getting honest or competent advice, don’t be afraid to ask for a second or third opinion.

Navigating School Life

ASD is a complex and far-ranging set of conditions. Every affected child is a bit different. Still, for millions of children on the spectrum, navigating school life—from preschool through high school, and in some cases beyond—is a singular challenge.

This is due to a myriad of factors. Though most developed nations have robust legal protections for students with disabilities (a category that includes children with ASD), some public schools simply aren’t equipped to support those with ASD. In other cases, ASD kids are subjected to mockery or bullying before, during and after school hours.

Even with proper support and protection from emotional and physical abuse, children with autism can struggle mightily in situations that non-ASD children traverse with ease.

For instance, ASD affects sensory perceptions, creating periods of heightened awareness that overload the senses and lead to emotional and physical breakdowns—and, with them, disruptive outbursts and tantrums that alienate other children and adults. Children with ASD tend to take things literally, which can be problematic in certain social situations and learning environments.

Children with ASD thrive in supportive environments in which they have agency and control. According to the Autism Society’s autism primer for teachers, the first step is to develop a rigorous, customized education program in collaboration with the child’s parents, teachers, medical team and support staff. Successful programs typically include:

  • Structured learning environments
  • Ample use of visual learning aids
  • Speech therapy
  • Physical/occupational therapy
  • Behavioral therapy and sensory management techniques
  • Partial or total “mainstreaming” with non-ASD students, depending on the ASD learner’s needs
  • Frequent evaluation and adjustments as necessary

Going to College and Living Independently

Many young people with ASD successfully make the transition to college or technical school, and from there to full-fledged independent living.

According to the Autism Society, the key to a successful college career is support. Young people who can no longer rely on parents and teachers for hands-on guidance and unconditional love must build networks using the resources provided by their higher education institutions.

In many cases, parents take an active role in forging these networks and setting the stage for their continued use. But it’s ultimately up to the students themselves to utilize them.

They’re much more likely to do so when they’re expecting to—in other words, when they’ve spent considerable time preparing for the challenges of semi- and fully independent living. Per the Autism Society, ASD students and parents should begin wrestling with these considerations during the second half of high school:

  • What career paths are open to the student? What does the student want to do with his or her working life?
  • How much support, realistically speaking, will the student need during and after college?
  • What can the family afford in terms of education and living expenses? Are scholarships or other means of financial support possible?
  • Of the education options open to the student, which appear most likely to provide safety and nurture?
  • What needs to be done to prepare the student for life after high school?