Navigating adult life with undiagnosed autism and then learning after the diagnosis that loved-ones suspected it all along can have devastating consequences.
SPEAK UP if you see autism traits in a family member!
And when I say “Speak Up,” I mean directly to that individual, not behind their back to other family members.
I feel so betrayed. While thrilled to get my validating Autism Spectrum diagnosis, I also feel severely cheated and robbed – because it was only in later middle-age that the lights went on and I realized that autism was the only condition that explained my internal experiences and social struggles – while for MANY years, siblings “knew” I was autistic but SAID NOTHING.
“What I find most common in my work with autistic people (and even with myself, honestly) is that while growing up, autistic people make the assumption that the traits and symptoms we are experiencing are the same traits and symptoms that ALL people experience,” says Dolly Ferraiuolo, LCSW and founder of SHARE of Florida, a mental health service provider.
“This assumption usually means we do not question the pain and discomfort we’re feeling on the day-to-day because we think everyone is struggling in the same ways we are struggling,” continues Dolly, who was diagnosed with autism at 28.
“To find out down the line there are loved-ones who recognized autistic symptoms and didn’t say anything can be incredibly hurtful and frustrating — because they could have saved us years of pain and discomfort.”
I’m going to cut in here. In my 20s and 30s I tried very hard to get a boyfriend – a soulmate with whom I could spend the rest of my life.
My experiences on the “dating scene” were so abominable that I frequently brooded over how so many women would have a boyfriend within two weeks of moving to a new city, while here I was in the same big city for years, unable to get even a lunch date at the hotdog stand.
It wasn’t like I had giant hairy warts on my face, never showered, spit when talking and was mean.
I was attractive, articulate, educated, athletic, worked out, didn’t drink, smoke or do drugs, gave good eye contact – yet ultimately, I concluded that I was just “too weird” to ever get a boyfriend.
I also concluded, very early on in adulthood, that if I ever did meet a soulmate, he’d surely have a “mental problem,” be weird or odd, or have schizophrenia.
I couldn’t fathom how a “normal,” typical man could fall for me, even though objectively, I saw myself as intelligent, creative and attractive, and also liked the outdoors, eating out, yada yada yada.
Thanks to my siblings who kept hushed about my autism, I spent many years wasting time and money seeking romance among neurotypical men.
Had I known way back then that I was autistic (I would’ve sought an assessment had family members clued me in), I would’ve joined autistic dating clubs, composed personal ads directed towards autistic men and participated in social functions given by local organizations that serviced autistic people.
Though all of that would not have guaranteed finding a soulmate, it would’ve greatly spiked the odds in my favor.
Dolly explains, “It’s easy to get resentful because those who recognize the symptoms, but don’t say anything, do this because they hold the belief that being autistic is a negative and hurtful thing — which we then translate to ‘Our loved-ones think something is wrong with us.’
“It’s frustrating to know that people in this world would rather see you suffer than have an ‘uncomfortable’ conversation with you.”
Just how uncomfortable might an “I think you’re autistic” conversation be?
Family members and other loved-ones need to consider the very strong possibility that those words just might bring relief to the recipient, rather than anger.
People with undiagnosed ASD go through life wondering why they’re different or feel disconnected and can never fit in.
Then one day, a sibling or other family member or sister-in-law tactfully points out the possibility of being on the Spectrum.
An autistic person, with their high aptitude for logic and order, will very likely greet this speculation with intrigue and even hope!
It could be the answer they’ve been looking for all their life! To be deprived of this because family members, other loved-ones and friends don’t have the balls to broach the subject is just … CRUSHING.
“It’s never too late to find true love” does not apply to me. Plus, it would’ve been nice to know in my 20s, even 30s, that finally, there’s a community of fascinating individuals I could actually feel an affinity with.
“It’s important to work to get out of your resentment and negative feelings toward these people because, at the end of the day, we have to remember that this neurotypical world isn’t built for us — and people don’t know what they don’t know until they know it,” explains Dolly.
“Most people’s knowledge of autism is based on faulty narratives in the media, so it’s not necessarily their fault for not knowing how to approach the subject with their loved-ones.
“Society would benefit from autistic people continuing to find their voice and speaking up to educate communities about ‘real’ autism and not the cliché versions of autistic people they see in the movies and TV.”
Think a Loved-One Is on the Spectrum? How to Approach
Keep in mind that autistic people like directness and honesty. Be upfront and straightforward.
Don’t dilly-dally and beat around the bush (and it’s not true that all autistic people don’t understand figures of speech).
Never mention autism in a negative light, such as, “I swear, you must be autistic, with this crazy new interest of yours. I’m sick of hearing about it.”
Another example to avoid: “Ever wonder why you suck at people skills? I bet you’re autistic. You need therapy.”
Instead, try something like this: “By the way, there’s a condition that might explain all the struggles you’ve ever had. It’s autism.
“Never mind the portrayals you’ve seen on TV. Autism presents in all flavors, shapes and sizes, and some autistic people are very independent and opinionated, while others are quieter and more reserved.
“Why don’t you seek out an assessment? You’re a logic-based person who wants answers. This might be the answer you’ve always been looking for.”
If you’re even the least bit concerned about your loved-one, you’ll MAKE THE EFFORT to practice what to say and how to say it.
Yes, sometimes neurotypicals need to come up with a loose script and practice it a few times, if that’s what puts them at ease.
But giving someone a clue that could favorably change the trajectory of their life is NOT the same as telling someone their best friend was murdered.
If you’ve always seen traits in your loved-one or family member that you’ve come to realize are prevalent among autistic people, then bring it to their attention.
Put your anticipated discomfort or awkwardness aside, and instead consider what a humongous favor you’ll be doing.
Benefits of an Earlier ASD Diagnosis
• A very heightened chance of finding romance with like-minded people.
• A very heightened chance of finding friendships with like-minded people.
• Qualification for support services. In my case, this would’ve been financial, as one time I was living paycheck-to-paycheck.
• No longer feeling like an oddball. More than once I said to myself, “I am SO messed up.”
• Improved management of meltdowns. However, not all autistic people have meltdowns. Don’t ever conclude that your family member “can’t be autistic after all because she doesn’t have meltdowns.”
• A greater understanding of internal thought processes and sensory issues, leading to better management of them.
• Improved ability to show empathy. Had I known earlier in life that I was autistic, I would’ve made a concerted effort to hug my parents more when they were really in need of a good hug.
• Improved ability to contain hissy fits. I know for a fact that had I known I was on the Autism Spectrum, I would’ve recognized my “hissy fits” as having an autism component rather than blaming all of them on something my parents said.
I would’ve counted to 10, taken deep breaths and let the micro-storm blow over while thinking, “This is probably my autism; keep it inside my head.”
How much longer are you going to wait before telling a loved-one that you think they’re autistic?
Are you going to wait until they’ve spent 25 years wondering why they’ve never been able to experience the profound joys of having a soulmate?
Are you going to wait until they’ve experienced one workplace struggle after another over a period of 15 years? Or maybe 20 years is when you’ll finally speak up?
Perhaps you should wait until they’ve suffered a major mental health burnout?
Maybe you can wait until they’ve received their fifth misdiagnosis from out-of-date psychologists?
WHAT are you waiting for?
Dolly Ferraiuolo, an autistic self-advocate, connected with other strong clinicians to launch SHARE of Florida in 2019, an evidence-based, skill-based and solution-focused approach to therapy and psychiatry, providing mental health services to all individuals regardless of background. Specialties include diagnostic evaluations, autism, ADHD, anxiety, eating disorders, trauma, fitness and nutrition.
Lorra Garrick has been covering medical and fitness topics for many years, having written thousands of articles for print magazines and websites, including as a ghostwriter. She’s also a former ACE-certified personal trainer. In 2022 she received a diagnosis of Level 1 Autism Spectrum Disorder.