Autism is often described as a childhood disease. Parents looking for information about how to support a child on the spectrum have plenty of books, podcasts, films, and articles to choose from.
But autism spectrum disorder (ASD) is a chronic disease. Children who have behavioral issues may learn to control them, but they’ll always have autism. Eventually, they will grow into adults who have autism. They may not find the support they need once they age out of care.
Plenty of adults spend their entire lives not knowing that they have autism. They could miss out on vital opportunities because of that knowledge gap.
Treatment can help children build skills they need as adults, and ongoing therapy can help them hone those abilities. Treatment can also help adults develop the tools they need and didn’t know they were missing.
Autism in Adults Starts in Childhood
Autism spectrum disorder often becomes identifiable in very early childhood. In fact, some brain structure issues associated with autism can be seen during pregnancy, long before the baby is even born. The condition can’t spontaneously develop in adulthood, but since ASD is chronic, plenty of adults have the condition.
Children as young as 18 months can be diagnosed with ASD, but many children don’t get a diagnosis. Researchers say up to 25% of kids with autism have symptoms, but they don’t get the diagnosis that could help them get effective treatment.
In adults, common autism symptoms include:
- Communication struggles. Nonverbal signs seem to elude you, and you talk in a monotone voice that others find unusual. You take over conversations with explorations of topics that interest you.
- Emotional distress. You feel things acutely, and sometimes, your emotions take over and guide your behavior.
- Repetition. You follow the same daily routine, no matter what else is happening that day.
- Restriction. You don’t experiment with your routines or hobbies. You find a core set of interesting things, and you stick with them.
- Social isolation. While you may long for a best friend or romantic partner, you find it hard to connect with others.
- Self-soothing habits. You clear your throat or hum in quiet spaces. Or you flap your fingers or hands when excited.
You may see yourself in all of these symptoms, or maybe only a couple seem very familiar while others do not. It’s not unusual for adults to have just a few symptoms, rather than checking off the whole list.
Symptoms can also vary by gender. Some women with autism are quieter than their male counterparts, and they may have more developed social skills. They still have autism, but it’s harder to diagnose because women are more likely to mask their symptoms.
How Many Adults Have Autism?
The autism community is growing. For years, researchers have told us that more children emerge from doctors’ visits with an ASD diagnosis. As doctors become more familiar with what autism is and what it looks like, they are more likely to apply the diagnosis to children who need help, where they may have overlooked these children before.
All children who receive a diagnosis will become adults with autism. That means close to 3% of the population could have an ASD diagnosis quite soon.
But there are plenty of adults who never get the diagnosis. Instead, they deal with:
- Improper help. They may be labeled as having depression, personality disorders, ADHD, or another mental health condition. Some even get treatment for these issues, and they grow frustrated when they don’t see improvement.
- Labels. They may be called “quirky” or “eccentric” by the people around them. These terms can be insensitive.
- Isolation. They may not relate to others, for reasons they don’t understand. They may operate in very small social circles.
We don’t know how many people live like this. But chances are, there are thousands of them.
Why Does a Diagnosis Matter?
For adults with undiagnosed autism, finding the answer may seem unimportant. After all, they have lived so long with the disorder that getting help may seem superfluous. But for some adults, getting a diagnosis is truly life-altering.
A man told the National Autistic Society in Europe that with his diagnosis, “Suddenly everything made sense.” He could understand why some things bothered him when they didn’t seem to distress anyone else. He realized why he often felt all alone, even when he was in the company of people he loved.
A woman told the Centers for Disease Control and Prevention that her diagnosis was the “greatest gift I have ever received.” She had a successful career, but she struggled with social interactions. Her diagnosis made the root of those problems easier to see.
Adults with autism often know that the way they experience the world is somehow unique or unusual. They may also know that they struggle with things others tackle with ease. The diagnosis helps put these issues in context. That allows for more self-awareness and ease.
A diagnosis can also come with tangible benefits, such as:
- Protection from discrimination. The Americans with Disabilities Act prohibits discrimination in employment, education, accommodation, and transportation. You could use your diagnosis to open a conversation with bosses, landlords, and teachers about the adjustments you need to succeed.
- Financial support. A diagnosis might qualify you for Medicare or Medicaid, so you can pay your bills and get the health care you need. People with severe autism may qualify for Social Security benefits too.
- Appropriate treatment. A misdiagnosis comes with significant consequences. You could be taking medication that causes severe side effects. Once doctors know the root issue, you can get the help you need.
A diagnosis won’t change who you are. You won’t lose your autonomy. You are in charge, and you can share your news or keep it to yourself. The choice is yours. But the information could give you the power you need to guide the rest of your life.
How Do Adults With Autism Get Diagnosed?
You can’t diagnose autism at home with a self-quiz. Only a professional can make that diagnosis for you. It typically happens after several steps are completed.
To get a diagnosis, you will:
- Make an appointment. You’ll probably start this conversation with your doctor. Don’t be surprised if you’re asked to meet with a mental health specialist, such as a psychiatrist.
- Submit your records. The professional will look over your physical records and any notes from prior mental health experts.
- Take several tests. You won’t donate blood or get a scan. You will answer questions as openly and honestly as possible. You’ll complete some tests on paper, and others will be conversations.
- Offer references. An outsider’s perspective helps professionals understand how you act and react every day. Your friends, romantic partners, close family members, or colleagues may have valuable insights.
It can take several weeks for professionals to understand you, your symptoms, and your life. When that work is done, a diagnosis is applied or rejected.
The results of your tests are confidential. The term may sit in your medical record, but it won’t leave your doctor’s office unless you share it.
How Does Treatment Help?
You’ll understand your mind, your tendencies, and your habits with insights from your ASD diagnosis. Your doctor may also suggest treatment. Autism is a lifelong condition, but therapy could give you tools you’ll need to succeed in a world that is not often made for people with autism.
For example, Autism Speaks says about half of 25-year-old adults with autism have never held a paying job. Those who do work often take on part-time positions with low salaries and no benefits. They may try to put together a life while living below the poverty line.
Even some people with moderate forms of ASD — which are more likely to “pass” and elude diagnosis — have severe struggles, researchers say. Most don’t have partners, and they have limited social opportunities. Many live isolated lives. But they don’t have to live this way.
Autism is a lifelong disorder, but treatment can help. Applied behavior analysis (ABA), the standard autism treatment protocol, can be helpful for adults.
Autism Speaks explains that ABA programs can help to:
- Build communication skills.
- Enhance attention and focus.
- Boost social ability.
- Limit problem behaviors.
You will meet with an ABA provider to discuss your life, your limitations, and your goals. Together, you’ll determine what skills you want to improve, and you’ll pinpoint habits you’d like to break.
Then, you’ll practice together. Your therapist breaks your goals down into small pieces you’ll run through as drills until they become habitual for you.
For example, if eye contact eludes you, a session could involve:
- Discussion. You’ll talk about why this makes you uncomfortable and what physical sensations you feel when forced to make eye contact.
- Examination. You’ll describe what you’ve done in the past to avoid eye contact.
- Training. You’ll practice looking at your therapist’s forehead or nose, rather than their eyes, for short periods of time. Your therapist will reward you for this work, and you might pick up tips and tricks to make the task easier.
- Extension. The length of the look extends until you can hold this posture during a conversation.
- Practice. You’ll work on this technique outside of therapy and report back with progress.
The goal of ABA isn’t to alter your personality or reduce your independence. Instead, it’s to help you connect with others and thrive in the world.
Research on adults and ABA is limited. In one review, researchers found few studies they liked about how well the technique worked. Many people who use ABA find that it helps them tackle tasks that always seemed impossible. With therapy, they could do things that always seemed out of reach.
If you’re an adult with autism and you’ve struggled, this could be the treatment you need to enjoy your life fully.
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- Asperger Syndrome: Suddenly Everything Made Sense. National Autistic Society.
- Living With Autism Spectrum Disorder: Anita’s Story. (August 2019). Centers for Disease Control and Prevention.
- Autism in Adults: Challenges and Resources That Can Help. (April 2018). Everyday Health.
- Autism Statistics and Facts. Autism Speaks.
- People With Milder Forms of Autism Struggle as Adults. (September 2011). Spectrum.
- Applied Behavior Analysis (ABA). Autism Speaks.
- A Systematic Review of Psychosocial Interventions for Adults With Autism Spectrum Disorders. (March 2013). Journal of Autism and Developmental Disorders.