Adult autism: Relief upon diagnosis, which can be hard to come by
Debra Brisch knew her whole life that she was different, but she always felt like there was something wrong with her. Until now.
After lifelong confusion, isolation, and social struggles, Brisch, now 69, was finally diagnosed with autism a few years ago.
Since then, she has set out on a mission to spread the word about adult autism, and encourage seniors to look into getting a diagnosis and support if they suspect they may be autistic.
Because April is National Autism Awareness Month, Brisch thought now would be a great time to inform and educate others about her life with autism.
“U.S. Census statistics and CDC combined information shows us that up to 450 or more senior adults in Alpena County are autistic, most without ever knowing they are autistic,” Brisch said.
She said late diagnosis even as an older adult can help.
“Diagnosis has changed my life, all for the better,” Brisch said.
Now, she can find support online through social media support groups made up of similar people who have learned of their autism as adults. She has sought local support groups, but has not been able to find any in Alpena. She said because she and many others like her are uncomfortable in social settings, the online model has proven beneficial. For her, texting or chatting with others online is much easier to process than in-person communication, which can be confusing when you are autistic. Body language, facial expressions, and social clues are difficult for her to interpret and comprehend, so she has often been misunderstood in social settings, she said.
“Autism is not something that goes away in a lifetime,” she said. “It cannot be cured. Senior citizens were not diagnosed because autism diagnosis was not practiced before 1980, and then rarely, until the past 10 years, when more information about the nature of autism has been discovered and included in teaching today’s diagnostic and support personnel.”
Brisch explained many of the social struggles of older autistic adults include isolation, poverty, homelessness, substance abuse, lack of access to health care, shorter life span, and more.
She said autism is genetic, and, looking back, Brisch believes her mother was autistic, as well as some others in her immediate family.
When Brisch was 65, she watched a PBS documentary with her daughter about autistic teenagers, which opened her eyes to the possibility that she was autistic.
“About halfway through it, I started weeping and going, ‘That was me, that was me,'” Brisch recalled. “And I almost never cry. And I kept going, ‘That was what it was like!'”
Her daughter consoled her and said, “Well, maybe you’re autistic. Maybe you should check that out.”
“I had never even dreamed, although I had a dear friend who had an autistic child, who thought he was probably autistic himself, and I worked my last job … for a state institution that had almost all autistic kids,” Brisch said. “And it never crossed my mind to relate to them, you know, that I would be autistic.”
She recalled being told all her life “there’s nothing wrong with you,” but that everything was always her fault.
“Once I learned I was autistic, I found out that I only have 25th percentile visual processing, and 35th percentile audial processing,” she explained. “And what that means is … I have true sensory processing disability. Anything I do in real time, like, if I’m in a classroom, I can’t sort all the sounds or anything and make sense of them.”
She gets distracted easily because of her acute hearing, but lacks the ability to process the information coming in.
“Much of it doesn’t register, or I can twist it around in my understanding,” she said. “So, I can’t listen to lectures, I can’t watch movies, I can’t go out and socialize with people in a restaurant. All of the things that people take for granted confuse me, leave me bewildered and upset, and feeling like I’m behind and out of it, and I was. It’s the exact reason that I was, but I never knew all these years.”
She said reading is the best way for her to process information, so the internet has been helpful to her in researching autism, but she found it hard to find anything about older adults with autism.
“Everything is geared toward children,” she said. “And, until really recently, people didn’t even recognize the fact that autism has been around forever.”
Research shows between 2 and 3% of people are autistic, Brisch said.
According to AutismSpeaks.org, the CDC reported that approximately 1 in 54 children in the U.S. is diagnosed with an autism spectrum disorder (ASD), according to 2016 data, which shows that 1 in 34 boys identified with autism, and 1 in 144 girls identified with autism. Boys are four times more likely to be diagnosed with autism than girls.
Because autism diagnosis has mainly centered on children and teens, Brisch said it was difficult to get diagnosed as an older adult.
She explained that autism is a neurological disorder, and, when tested, those with autism often show very high performance in some areas and very low performance in others. Those without autism, called “neurotypical,” will perform closer to the middle on those types of tests, without the high hills and low valleys.
“I grew up believing that I was stupid and thoughtless, and inconsiderate — I had all these labels because I was always making mistakes and I was always offending people, and I couldn’t understand how to interact with people,” Brisch recalled. “I can’t read a person, by looking at you. Another person could look into your eyes and understand, and we could relate in that way, but, usually, I can’t do that. Usually, I can’t read another person. Usually, if a person makes a statement, I can’t tell if they’re being sarcastic, or if they’re being sincere … If they’re implying something. All that’s lost. You lose all that fine tuning in those nuances.”
No biological markers have been found for autism yet, she said, but researchers are trying to determine its genetic links.
“They have behavioral markers, so, although autism is neurological in origin, it is behavioral in the way it affects us, and the way we respond to the input that we get or don’t get,” Brisch said.
Brisch also has what is called “aphantasia,” the inability to picture things in her mind.
“Some of us think in pictures,” she said. “Some of us can actually see things in their mind. I can’t … If I say, ‘Picture a beach ball,’ you can see one. You know what one looks like, in your head. I know what a beach ball is, but I can’t see one. I see nothing. And, it’s the same for anything.”
She said aphantasia does not just affect autistic people, but affects 2% of the population across the board. She said she can imagine things she has already seen, but she cannot picture things that she has not seen before.
Living her whole life feeling like an outsider, she has adapted to the world around her, but it hasn’t been easy.
“I have learned a whole lot, in my lifetime, of ways to be more competent in the world, but I am still so far behind what an average person would be,” Brisch said. “Until I discovered my autism and began to think about everything else in my life … and was able to start sorting, and putting all those things into the perspective of my autism having to do with those things … now that I know that I have this diagnosis, I can understand all that. Where, before, it was just like, the world was against me, everybody was against me, I didn’t have any tools to cope with it.”
She said you might be autistic if you have struggles in socialization, struggles in communicating, and if you have fixed ideas, rigidity of thinking, and repetitiveness.
She said each autistic person is unique.
“You’ll never meet two autistic people the same,” she added. “There’s a common saying among autistic people, that if you’ve met one autistic person, you’ve met one autistic person.”
Brisch has a blog with resources for anyone wishing to learn more about autism, especially as an adult.
Access her blog at https://oldladywithautism.blog/author/debrabrisch3436/ or search for the group, “Autism for Older Adults” on Facebook.
Darby Hinkley is Lifestyles editor. She can be reached at 989-358-5691 or email@example.com.