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Sharing an Adult Autism Diagnosis with Family and Friends

No two people with autism have the same symptoms, and these symptoms differ in severity.

Although autism is typically diagnosed in toddlers, individuals can go undiagnosed until they are adults. In most cases, these individuals are considered high-functioning. Symptoms may not have been overly prominent — but there will be signs.

Whether you or your loved one struggle to communicate, regulate emotions and behaviors, or just seem eccentric to others, autism may be the underlying cause. If you have recently received a diagnosis, you may wonder, what’s next?

How will I live with an autism diagnosis, and what will others think? How do I tell my friends and family that I have autism?

Learn More About The Adult Autism Center

There are many emotions that come with an adult autism diagnosis, ranging from relief to confusion and even anger and shame. These emotions can make the situation even more overwhelming. Although there is more awareness surrounding autism than ever before, there is still a lot of misinformation out there. 

Family and friends may not know what it means, or they may have a skewed understanding of the condition. These preconceived beliefs and stereotypes can make sharing the diagnosis with your loved ones even more daunting. 

In this post, we’ll go over the basics of adult autism and give you some pointers to sharing the diagnosis with family and friends. 

How To Explain Autism To A Family Member, And Friend

According to the CDC, approximately 2.21% of adults in the United States have autism. Autism is a lifelong condition, which is why a diagnosis is so important. The goal is to ensure better outcomes for individuals, as well as for their families and communities.

Be prepared for questions and answer them to the best of your ability.

For example, many people will ask what causes autism?

You can say:

  • Autism a lifelong neurodevelopmental disability
  • It starts in utero — meaning, as a child, you were also on the autism spectrum
  • Neither does bad parenting

Depending on your situation, you may anticipate difficult reactions. This is a big event, so allow your loved ones to express their emotions. Often, family members need time to process a diagnosis.
Tip: If friends and family react poorly, remind them that diagnosis is beneficial. You can now seek therapies and services that will be transformative — and that’s something to celebrate!
When sharing an adult autism diagnosis with friends and family, we recommend the following:

Putting The Focus On Behaviors

If you have gone your entire life without an autism diagnosis, it can be quite jarring to suddenly disclose that you have been diagnosed. This can lead to knee-jerk reactions from people who may try to tell you there must be a mistake. 
The best way to counter this is to focus on the behaviors you display that have led to the diagnosis. 
For example, the inability to make eye contact when talking, a fixation on random objects, facts, or figures — and any other behaviors you display. Having these concrete examples will help people gain a better understanding of the condition. 

Explain The Basics Of Autism

The most significant part of telling people about your autism diagnosis is education. The better they understand the condition, the more likely they will be to have an “aha moment” and get on the same page as you. 
Some basics to reiterate are:

  • Difficulty with social skills — Talk about how certain social settings and interactions make you feel. Sarcasm is hard for a lot of people with autism to grasp, as is understanding facial expressions, public speaking, and making eye contact. 
  • Restricted or repetitive interests and behaviors — Some common examples include eating the exact same foods for all meals, adhering to a strict schedule and becoming upset and/or disoriented when that schedule gets interrupted, and having an intense interest in one subject that you are fixated on, like a certain movie, sports team, or TV show.

You May Not Fit Their Image Of Autism

As we mentioned, there is a lot of misinformation and stereotypes out there about autism. This can lead to friends and family trying to play down or not believe your diagnosis. Explain to them that autism is not a one-size-fits-all condition, and instead, it is a spectrum of behaviors. Let them know that every person with autism is different when it comes to onset, severity, and symptoms. Some people with autism can be nonverbal, while others can be hyper-verbal and talk your ear off while not being able to engage in a back-and-forth conversation very well.

Explain How The Diagnosis Will Help You

At the end of the day, your friends and family only want what’s best for you. This is why it’s critical to tell them how much and why the diagnosis will benefit you. Some people are under the misconception that an autism diagnosis may hinder you or hold you back. It’s up to you (or your doctor or a loved one) to explain to them that it is quite the opposite. There’s relief that comes with knowing what’s causing your struggles. 
Depending on your situation, you may anticipate difficult reactions. This is a big event, so allow your loved ones to express their emotions. Often, family members need time to process a diagnosis.
Tip: If friends and family react poorly, remind them that diagnosis is beneficial. You can now seek therapies and services that will be transformative.

Do You Have To Disclose An Autism Diagnosis?

No. Disclosing an autism diagnosis is a personal choice. You should never feel pressured into telling anybody about your diagnosis. If you’re worried about disclosing the diagnosis to your employer, it’s important to remember that there is no law obligating you to disclose any disability. You should only dislocate your diagnosis when you are comfortable sharing. 
One benefit to disclosing your diagnosis on the job is you will be eligible for accommodations under the Americans with Disability Act (ADA). 
Some ADA accommodations at work may include:

  • Restructuring your duties or work schedule
  • Making existing facilities more accessible for you. For example, if the noise of co-workers chatting on the phone distracts you, your work may move you into an office or away from the crowd. 
  • Acquiring or modifying devices or equipment, training materials, and/or policies.

Here are some additional resources for adults with autism.

The Adult Autism Center Is Here for You

An autism diagnosis may seem like a life-altering event. But, it’s important to know that you are not alone. Adults with autism live happy, independent, and successful lives just as their peers who do not have autism.

The Adult Autism Center is a first-of-its-kind organization that seeks to provide hands-on training and ABA therapy for people with autism. These programs focus on daily living, vocational skills, and much more

Learn more about how our programs can help serve you and your loved one today!

Please contact us today!

Heather Davis graduated from Texas A&M University with her Ph.D. in Special Education and is a Board-Certified Behavior Analyst (BCBA). Heather has spent 18 years of her professional career working with children diagnosed with autism and their families. In her previous role as the Clinical Director of the Carmen B. Pingree Autism Center of Learning, her focus was to provide on-going staff training to ensure the delivery of high-quality, evidence-based services to meet the individualized needs of each child diagnosed with autism. She is inspired to continue to work in this field by the progress clients demonstrate which helps to improve their quality of life. Hearing individuals speak their first words, gain independent living skills, and demonstrate skills families never thought possible are what drive her to become a better clinician and continue to work with these important members of our community. In her free time, Heather enjoys running, reading, and spending time with her twin girls and husband exploring all the wonderful landscapes of Utah.

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