While autism spectrum disorder (ASD) is often diagnosed within the first few years of a child’s life, many adults are now being treated for ASD. While an ASD diagnosis can be difficult to navigate, there is a wide range of adult autism support available. This blog provides an overview of ASD, including common symptoms, the benefits of an official diagnosis, legal rights, and treatment options.
What is Autism Spectrum Disorder?
While many people use the word “autism,” the proper term is “autism spectrum disorder.” Autism spectrum disorder (ASD) includes the following conditions:
- Asperger syndrome
- Autism disorder
- Unspecified pervasive developmental disorders
Because ASD is a spectrum disorder, symptoms are unique to each individual and range from mild to severe. While ASD is usually diagnosed in children, individuals who don’t show traditional symptoms may not be diagnosed until adulthood. Many people with ASD experience certain co-occurring conditions related to their symptoms, including depression and anxiety.
Common Symptoms of Autism Spectrum Disorder
The signs and symptoms of autism spectrum disorder fall into three main categories:
- Verbal and nonverbal communication
- Social interaction
- Repetitive or ritualistic behavior
While these symptoms (and their severity) vary from person to person, they often become more apparent in adulthood. Children with autism have parents and teachers as their support systems, but adults with ASD may feel isolated and alone. It can be difficult to juggle the demands of adult life while handling your symptoms, which we’ll explore below.
If you’re asking yourself, “what do adults with autism struggle with?,” here are the main symptoms:
- Difficulty interpreting body language and facial expressions
- Trouble picking up on social cues, such as the give-and-take of conversation
- Inability to put yourself in someone else’s shoes or interpret their feelings
- Difficulty regulating emotions, especially when routines or schedules change
- Trouble developing friendships and romantic relationships
- Flat speaking patterns that don’t accurately communicate your feelings
- Tendency towards repetitive behaviors
- Deep interest in only one or two topics
- Inability to make eye contact when speaking with others
- Clumsiness and general coordination difficulties
- Trouble interpreting and accepting corrections or feedback from others
Where to Start If You Suspect You Have Autism Spectrum Disorder
If you think you may have autism spectrum disorder, the best place to start is with a self-assessment test. These informal questionnaires allow you to explore your symptoms and help you prepare for a discussion with a healthcare provider.
Once you’ve taken a self-assessment test, schedule an appointment with your primary care physician (PCP) or a mental health professional. You can also contact a local ASD center, such as your nearest Autism Speaks treatment network location. These organizations may have a consulting psychologist on staff who can help you if a formal assessment is too expensive.
You can also pursue the following alternatives if you suspect you have autism spectrum disorder:
- Contact the psychology/psychiatry department of a local university or teaching hospital.
- Ask members of an adult autism support group where they received their diagnoses.
- Request doctor recommendations from your therapist or ask them to diagnose you.
- Reach out to the governing body for psychologists and ask for the names of doctors in your area familiar with ASD.
- Obtain a diagnosis from a supervised graduate student at a local university or teaching hospital.
How Medical Professionals Diagnose Adult ASD
If you start with your primary care physician, they’ll review your concerns and refer you to a specialist. This specialist will then perform a thorough evaluation that includes behavior checklists, symptom self-reporting, and direct observations.
They’ll also speak with your parents, siblings, and significant other to gain a holistic picture of your lifelong behavior patterns. Once the evaluation is complete, you’ll meet with the specialist to review your results and explore treatment options.
Benefits of Receiving an Adult Autism Spectrum Disorder Diagnosis
While hearing you have ASD can be disconcerting, there are many benefits to receiving an official diagnosis. For starters, a documented diagnosis ensures you have access to all of the services and support available to you by law. These include state or federal financial assistance, vocational therapy, tutors, and low-cost mental health services, among others.
An ASD diagnosis can also help you pinpoint your unique strengths and use them to overcome your challenges. You may gain a new perspective on your relationships with other people and strengthen ties with family and friends. Sharing your diagnosis with others can also help them understand your circumstances and empathize with your struggles.
Obstacles in Getting an Adult Autism Spectrum Disorder Diagnosis
Despite the benefits of an ASD diagnosis, it can be difficult to find medical professionals who diagnose and treat adults. If you’ve lived with ASD for years, you’ve probably learned to mask your symptoms or may have milder signs that are difficult to diagnose. And because there’s no lab test, diagnoses are based on non-quantitative behavioral factors that are hard to pinpoint.
Common Adult Autism Misdiagnoses
Unfortunately, the nuances and variances associated with autism spectrum disorder often lead to damaging misdiagnoses. These include (but are not limited to):
- Attention deficit disorder (ADD)
- Attention-deficit/hyperactivity disorder (ADHD)
- Eating disorder
- Generalized anxiety disorder (GAD)
- Learning disability
- Obsessive-compulsive disorder (OCD)
- Personality disorder
- Sensory processing disorder
Disclosing Your Autism Spectrum Disorder Diagnosis
The decision to disclose your adult autism spectrum diagnosis to family, friends, and coworkers is highly personal. And while some people choose to keep their diagnosis to themselves, there are many benefits to disclosure.
If you decide to disclose your diagnosis, be sure to explain how ASD affects your daily life and interactions with others. An open dialogue about your unique challenges can help those around you better understand your behavior and needs. If you’re uncomfortable disclosing it on your own, start with a close friend or family member and ask them to be your advocate.
In some cases, you may receive a negative reaction during disclosure. These reactions typically come from a lack of understanding and provide valuable opportunities to educate others. There is always a certain degree of trial and error, and there’s no way to predict how people will react. This shouldn’t hold you back from disclosing your diagnosis if you think it’s the right choice, though.
Legal Rights of Adults with Autism Spectrum Disorder
Like everyone with a disability, adults with autism spectrum disorder are legally entitled to a variety of support and services. We’ll take a closer look at each legal protection below.
Americans with Disabilities Act (ADA)
The Americans with Disabilities Act ensures equal opportunity for people with disabilities in commercial facilities, transportation, public accommodations, and government services. Plus, Title I of the ADA requires employers with 15+ employees to provide reasonable accommodations and prohibits discrimination based on a disability. The U.S. Department of Labor Job Accommodation Network also provides accommodations specific to autism.
Medicaid Home- & Community-Based Services (HCBS)
Depending on where you live, you may receive Home- & Community-Based Services (HCBS) through your state’s Medicaid waiver. These include home health aides, adult day programs, and case management, among others.
Rehabilitation Act of 1973 (Section 504)
This national law requires entities that receive federal funding to make their programs accessible for people with disabilities. These include public colleges and universities, employers, and any organization that receives government assistance. Section 504 also requires public school districts to provide free and appropriate education for students with disabilities.
If you receive Social Security benefits, you may be eligible for additional adult autism supports depending on the severity of your diagnosis. If you worked for a certain number of years in the past and paid enough into Social Security, you may receive Social Security Disability Insurance (SSDI).
If you’re unable to get a job due to your disability and are not eligible for SSDI, you may qualify for Supplemental Security Income (SSI). SSI provides assistance for people with disabilities who do not have the financial resources to satisfy basic food and shelter needs.
If you’re able to work and want a job, Social Security offers work incentives like their Ticket to Work program and Plan to Achieve Self-Support (PASS). You can learn more about the benefits you’re entitled to using the Social Security Administration’s Benefit Eligibility Screening Tool.
Vocational Rehabilitation Services
You may be eligible for vocational rehabilitation programs offered through your state’s Office of Vocational Rehabilitation (OVR). These services include counseling, evaluation, and job placement services for people with disabilities, including ASD. You may also have the opportunity to develop an Individualized Plan for Employment (IPE) through the OVR.
Adult Autism Spectrum Disorder Treatment Options
Are you wondering, “how do you cope with an adult autism diagnosis?” If so, it’s important to remember that autism is not a disease, so you are under no obligation to seek treatment. However, therapy can help you significantly reduce your symptoms and improve your ability to deal with the stressors of everyday life.
Individuals who treat their ASD typically undergo a blend of verbal, cognitive, and behavioral therapies. Your therapist will work closely with you to design a customized treatment plan based on your unique challenges. These may include depression and anxiety, struggles at work, feelings of isolation, or family problems. By contextualizing ASD within your everyday life, you can create practical ways to manage your symptoms.
Applied Behavior Analysis (ABA)
One of the most effective therapies for autism spectrum disorder is known as applied behavior analysis (ABA). ABA is designed to teach people with ASD how to overcome any symptoms that are negatively impacting their daily life. If you choose to treat your ASD with applied behavior analysis, you’ll work through the following steps:
- Define specific goals by identifying your unique challenges. Be sure to prioritize your goals based on your most frequent challenges that have the greatest impact on your everyday life.
- Create strategies to reach each goal and develop new skills. This typically involves repeatedly practicing new behaviors in real-life situations. It’s key to have a backup plan to handle unexpected changes or deviations.
- Monitor and evaluate your progress throughout the process. Collecting and analyzing data helps you determine when you’re ready to move to the next goal on your list. Always stay positive and celebrate your successes.
Other Adult Autism Spectrum Disorder Treatment Options
Applied behavior analysis is only one of the treatment routes available to people with ASD. You can also pursue one (or several) of the treatment options below:
- Ongoing counseling with a licensed mental health professional
- Vocational rehabilitation for job-related problems
- Group therapy with a trained social worker
- Taking prescription medications for co-occurring mental health issues
Support Groups & Resources for Adults with Autism Spectrum Disorder
While an adult ASD diagnosis can feel alienating at first, there are a variety of support groups out there. Along with in-person groups, many people have found comfort and support in the following online resources:
- Autistic Women & Nonbinary Network (AWN)
- Autistics.org: The Real Voice of Autism
- Shift Journal of Alternatives: Neurodiversity and Social Change
- The Autistic Self-Advocacy Network
- The Autism Society of America (ASA)
- The Thinking Person’s Guide to Autism
Getting Adult Autism Support in Pennsylvania
If you live in Pennsylvania, there are a variety of state-sponsored services and support avenues available to you. The Pennsylvania Office of Developmental Programs support people with ASD through the following waivers:
- Adult Autism Waiver (AAW)
- Community Living Waiver (CLW)
- Consolidated Waiver
- Person Family-Directed Support Waiver (PFDS)
Adult residents of Chester, Cumberland, Dauphin, and Lancaster counties are also eligible for the Adult Community Autism Program (ACAP). Be sure to also look into the Autism Services, Education, Resources, and Training (ASERT) Collaborative, which is offered by the Pennsylvania Bureau of Autism Services (BAS).