As a parent of a child with autism, you’ve learned all sorts of terms you never even considered before the diagnosis. Phrases like neurodivergent, stimming, and executive functioning roll off your tongue with ease. But if you get stuck on what to call autism as a general category, you’re not alone.
Consider this: In a page from the Centers for Disease Control and Prevention about autism spectrum disorder (ASD), the condition is defined as a disability.
Which is right? Which is wrong? The answer is a little complicated.
Disorder or Disability? The Autism Debate
Autism impairment exists on a spectrum. Where some children have mild issues that an outsider might struggle to see, others have a profoundly different way of interacting with the world. Applying one word to a widespread set of symptoms is never easy.
Debates are spirited, but people tend to fall into one of two categories:
- Autism is a disorder. Families like this may prefer to use the word disorder when talking about autism, as they don’t want to stigmatize a child. They hope for a world in which there is space made for every child, despite differences in neurological development. Calling changes in perception and communication a disability seems like an insult.
- Autism is a disability. Families like this may believe that their child’s struggles are severe and deserving of governmental and legislative assistance. They want the condition to be taken seriously, so their child can get needed help throughout their lifespan. To them, the word disorder minimizes the severity of the issues they see.
You know your child best, and you’re encouraged to use the term that seems just right to you. It’s also perfectly reasonable to ask friends, family members, and service providers to use the term you choose when talking about your child. In your home, you set the tone.
But before you get into an argument in an online community or a doctor’s waiting room, remember that other parents have the same choices. Their terminology doesn’t lessen yours. Making space for different viewpoints is always the right choice.
Understanding what the terms mean and why some families pick one over the other might be helpful as you engage in these discussions.
What Is a Disorder?
A condition that disrupts your body’s normal function is a disorder. Think of this as a medical term a doctor might use to describe a condition like autism. It changes the way a brain develops, and it alters the way your child might communicate with you and others.
In medical texts, including the Diagnostic and Statistical Manual of Mental Disorders (DSM), the word disorder is linked to autism and other issues such as the following:
- Attention-deficit hyperactivity disorder
- Intellectual disability
Some of the conditions we’ve listed here could impair a person’s ability to live a natural, unassisted life. Someone with schizophrenia, for example, might need lifelong medication assistance and help through difficult breakthrough episodes. The word disorder doesn’t imply that these conditions aren’t serious.
Similarly, some conditions on this list could be mild or transient. For example, people with mild dyslexia might need a little more time to finish a standardized test, and they may always read a little slowly. But they could get good jobs and be productive during their lifespan.
The word disorder isn’t tied to how serious a problem is or how much difficulty it causes. Instead, it’s a medical term that describes a condition.
What Is a Disability?
A disability is a disorder with legal significance attached to it. While a doctor might call your child’s condition a disorder, a lawyer might call it a disability.
Legal experts assess disorders, and they create lists of conditions that can cause known and life-long difficulties. Someone with a disability has a disorder that is significant enough that a person with it is entitled to things like:
- Modified educational plans.
- Additional staff in the classroom.
- Physical assistive devices.
- Help with medical bills.
You’ll see the word disability in legislation, such as the Individuals with Disabilities Education Act (IDEA). Autism is a qualifying disorder under IDEA.
Similarly, a disability, in the eyes of the Americans With Disabilities Act (ADA), is a condition that substantially limits the ability of a person to perform a major life activity, when compared to everyone else. The ADA condition list includes autism. But to claim disability benefits with the ADA, the person must meet this criterion:
- The person has a condition, like autism, that the ADA considers severe enough to limit major life activities.
- The person has a proven record (like medical notes) of that condition.
- If the person has no proven record, the person is “regarded as having such an impairment.”
Proof of an autism diagnosis isn’t enough to qualify a person for autism disability benefits. Severity plays a role. Even so, legislation like this and terms like disability aren’t intended to stigmatize your child or limit your family’s options. Instead, these laws are meant to connect your child with meaningful help, so you can move forward together.
For example, in 2018, about 10 percent of students with disabilities had autism and were served under IDEA. In 2017–2018, 72% of students like this graduated with a diploma from a regular high school.
Understanding Autism Disability Benefits
Let’s dig a little deeper into the help your family might get through the Social Security Administration (SSA) for autism. When families look closely at autism as a disability, they’re mainly concerned with this part of care.
- Social interactions. Your child struggles to respond to others or reciprocate in conversations.
- Communication. Your child can’t connect easily via verbal or nonverbal methods.
- Creativity. Your child seems unable to participate in imaginative or creative endeavors.
- Variety. Your child shows a limited interest in activities outside of a narrow list.
If your child is aged 3 to 18 years, at least two of these additional signs must also be present:
- Poor performance on language or communication tests
- Low functioning, as shown in standardized tests, doctor notes, or caregiver statements
- Reduced self-care ability, as demonstrated by feedback from caregivers
- Poor concentration, follow-through, or speed
As you skim this list, it’s clear that children who qualify for benefits face significant challenges due to their autism. Their families face challenges too. Qualifying for benefits could mean financial, physical, and meaningful help. Some children need that support throughout their lifespan.
Potential SSA benefits for autism include:
- Income. Supplemental Security Income (SSI) payments are available for families that qualify.
- Disability insurance. Social Security Disability Insurance (SSDI) benefits are available for adults who had a disability beginning earlier in life.
- Health insurance. Medicaid, Medicare, and Children’s Health Insurance Program services could be available to your family.
- Other help. Some SSA offices assist with employment opportunities and job training.
If you hope to apply for benefits through the SSA, you’ll need plenty of paperwork, time, and patience. Proving that your child meets all the criteria isn’t easy, and it isn’t meant to be so. But if you think your child does meet the terms, your hard work is worthwhile. Get started by visiting the SSA website. You can apply for benefits online.
Where Does Elemy Stand?
As a provider of medical services for children with autism, at Elemy, we use the word disorder when discussing autism. Our therapists will likely use this term when we’re describing how lessons plans work, what we’ll need from you, and how we’d like to help your child.
But we also know that some families benefit from getting disability benefits. We’re always willing to provide case notes and documentation you might need to help your child apply for benefits.
Autism Spectrum Disorder (ASD). (March 2020). Centers for Disease Control and Prevention.
DSM-5 Fact Sheets. American Psychiatric Association.
OSEP Fast Facts: Children Identified with Autism. (March 2020). Individuals with Disabilities Education Act.
ADA Knowledge Translation Center Legal Brief No. 4. (2020). ADA National Network.
Applying for Social Security Disability Benefits with Autism. (May 2019). Organization for Autism Research.
Benefits for Children with Disabilities. (2022). Social Security Administration.