April is autism acceptance month and I'm grateful to share a personal and eye-opening post written by my wife Sydney. She found out she is autistic in her 40s, which came as a surprise to us both.
It has been an enlightening discovery that has explained and taught us so much about how to better communicate. Further, I have more empathy and understanding of the way my wife does things.
I hope her story will help spread awareness and acceptance of just how diverse and remarkable the spectrum truly is. The better we can understand other people, the less conflict there will be. – Sam
Discovering Autism As An Adult Woman
How did the height of the global pandemic affect your life? I'd wager it was aggravating and down right exhausting. But, hopefully you turned some of those endless barrels of lemons into lemonade.
Maybe you picked up a new hobby, switched careers, really focused on your family, or KonMari‘d your whole house.
What did I do? I did a heck of a lot of homeschooling, stress-eating, research on ambulances and the broken EMS system, bleary-eyed reading at 12-1am, oh and I discovered that I'm autistic.
Yes. I discovered at age 40, right smack dab in the middle of the global pandemic, that I'm on the autism spectrum and have been my whole life. Phew! It was quite a lot to experience.
Autism Awareness And Acceptance
I'll get into how I found out I'm autistic below. But first I want to explain what autism is and what it's not. My primary goal with this post is to raise awareness, acceptance, and share some surprising things that you may not be aware of.
If someone like me can discover I'm autistic at age 40, surely someone else out there may too. Based on my research, there are actually quite a lot of people who have gone through a similar self-discovery experience as adults, especially women.
I have a type of autism formerly known as Asperger's syndrome – I'll explain why this classification was disbanded below – and am fortunate to have lived a very independent life.
Although I went through the last four decades not knowing I'm on the spectrum, I am in no way trying to downplay the immense challenges that autism has in many people's daily lives. Some children get a diagnosis as early as 18 months of age and may require dependent care their entire lives.
For a look into a very different autism experience than mine, check out Eileen Shaklee and Kate Swenson‘s blogs. These incredible moms write openly about their lives raising autistic kids. The fears, isolation, sadness, wins, regressions, and struggles they face every day are intense and real.
Wherever individuals fall on the spectrum, I want to spread love that we are all incredible people who don't need a “cure.” We think, feel, and express ourselves differently, sometimes significantly differently. And we are loved for who we are.
What Autism Is And Is Not
Now let's squash some misconceptions. First of all, autism spectrum disorder (ASD) is not a mental health disorder, it is a neurological disorder. What this means is that people on the spectrum have physical differences in their brain structures and neurotransmitter levels.
The term “neurodivergent” is often used to describe those with autism versus “neurotypical” for those without autism.
In other words, autistic people like myself have neurodivergent brains that are wired differently. And as a result, we process and respond to stimuli, information, emotions, and social situations differently than “everybody else,” or ”neurotypicals.”
Autism is an invisible condition that you can not see. People do not “look” autistic. So please don't tell someone, “but you don't look autistic.”
The Complex And Evolving History Of Autism
Autism has quite an evolving history. It's important to know the emergence of autism is not new. For example, a child now known to have had autism, was written about way back in 1799 over 200 years ago. The word autism was first used in 1908. And then in 1943, scientist Leo Kanner first wrote about autism appearing in children, almost eight decades ago.
Also important to note, autism it not caused by vaccines. The 1998 study that led everyone to believe that the MMR vaccine was linked to autism, was proven to be totally fabricated and retracted. In addition, the myth that the mercury-based vaccine preservative thimerosal caused ASD was also debunked.
Bear in mind there is no single cause of autism. However, research shows it does tend to run in families. But other studies also suggest it can develop from a combination of genetic and nongenetic, or environmental, influences.
ASD is highly complex and as unique to each individual as fingerprints. There is also an incredibly broad range in characteristics and severity, or sometimes lack thereof, hence the reference to being “on the spectrum.”
Girls And Women Have Been Overlooked Or Misdiagnosed
Historically it was thought to only affect males except in very rare cases. But, we now know girls and women can also have autism.
However, it often manifests differently in girls and has been harder to diagnose. Hopefully more research on spectrum girls and increased awareness will improve assessment techniques for females seeking diagnoses and support.
I found the below TED talk by Niamh McCann at age 16 on hidden Asperger's in girls quite enlightening. She's on the spectrum but “failed” traditional autism diagnosis tests. I loved her introduction, which was one of my lightbulb moments.
Without giving too much away, what comes to mind when you read the below sentences?
He bent over backwards.
She was on the ball.
The corresponding images she reveals from her own thoughts are exactly what I envisioned too. A somewhat funny, but very true example of how my autistic brain works, literally, like hers and so many others.
Colorful metaphors, slang, and sarcasm may be more difficult to pick up by those with autism. They can be extremely confusing.
But It's Not Called Asperger's Anymore
Speaking of Asperger's, however, I was surprised to learn a couple months ago that Asperger's Syndrome is technically defunct and is no longer considered a separate condition.
If you're unfamiliar with it, those diagnosed with Asperger's generally have normal-to-strong verbal skills and intelligence; strengths in focus, persistence and patterns; and a high attention to detail. But some of the common challenges include social interactions and changes in routine.
They might speak in a blunt or direct manner, leave long pauses in conversations, and have facial expressions (ex. blank, bored, sad) that don't match how they're feeling. If you've spoken to someone with these traits, you may have misinterpreted their mannerisms as rude.
Hopefully these types of misinterpretations will decrease with more awareness and acceptance of neurological differences.
May Be Losing My Hearing
Another common though unofficial trait, which I have, is experiencing delays between hearing spoken words and processing those sounds into recognizable words.
This affects me often enough that Sam thought I was losing my hearing many years ago because he kept on repeating himself. He encouraged me go to an ENT for a hearing test. I passed the hearing test with flying colors because my difficulty “hearing” is due with my autistic brain, not my ears.
Aspergers's Syndrome became an official diagnosis in 1994. But it was removed from the DSM (Diagnostic and Statistical Manual of Mental Disorders) less than twenty years later in 2013.
This reversal upset a lot of people in the “aspie” community who didn't want their identity taken away and rolled into autism. So why the change? Essentially, two distinct categories of autism was causing more harm than good.
Drop Low-Functioning Versus High-Functioning Autism Labels
People felt it was misleading to label autistic people as “high-functioning” or “low-functioning.” Plus, a lot of individuals have overlapping characteristics or fall somewhere in the middle.
The split was also causing problems with insurance billing. And the therapies/training prescribed for those with Asperger's were often insufficient.
Meanwhile, those separately categorized as autistic were also hurting, especially non-speaking children and young adults in need of dependent care. They were facing issues with discrimination and having their abilities underestimated.
What's also worth noting is a lot of disturbing history was unearthed about Hans Asperger and his involvement with the Nazis. He was the scientist and pediatrician who first studied children in 1944 who exhibited the characteristics that later became defined as Asperger's syndrome in 1981.
Knowing all of this, it seems fitting that the Asperger's classification was dropped in 2013.
The Autism Spectrum Is Not Linear
It's also important to know that autism is not linear. There is a shift towards visualizing the autism spectrum as a color wheel. There is currently no standardized visual representation. However, one of many examples is below. Weaknesses can be indicated closer to the center, strengths toward the exterior.
Even with all the research and progress that's been made, people are slow to recognize and accept change. For example, you'll still find hundreds of books and references to Asperger's and high-functioning vs low-functioning autism. Those terms are obsolete, but it could take years for them to fully fade away.
Other Interesting Facts About Autism
Here are some additional facts and statistics about autism that I found insightful.
- Roughly 1 in 44 children are diagnosed with ASD in the US according to the CDC.
- You can't check for autism using a blood test. Brain scans may become reliable for diagnoses in the future.
- Children do not grow out of autism; it is a lifelong condition that may appear as early as 18 months old.
- Autism is present in all ethnicities and socioeconomic groups. However, minorities are often diagnosed later and less frequently.
- About 40% of autistic people are non-speaking.
- Today, the DSM-5 categorizes autism into 3 levels, Level 1, Level 2, and Level 3.
- Although testing techniques may be inapt, studies estimate that roughly
- 31% of autistic children have an intellectual disability (IQ < 70),
- 25% are borderline (IQ 71-85), and
- 44% have average or above average (IQ > 85).
- Sadly, 66% of autistic children (ages 6-15) have been bullied. This needs to stop right now. With more education about autism in school, there should be more kindness.
- Studies show somewhere between 30-61% of autistic children also have ADHD.
- Early intervention is vital for autistic children and can help improve their learning, social skills, communication, speech, and brain development.
- Autistic individuals feel as much, if not more, empathy and emotions as others. However, it may be harder to recognize or expressed in atypical ways, especially if they feel anxious.
- ASD doesn't make a person cold or unemotional.
- Many people with autism feel and express love, have a sense of humor, enjoy hugs, and want meaningful relationships and friends.
- Savant syndrome, a combination of significant cognitive impairments and extraordinary abilities, was previously thought to affect 1 in 10 people with ASD. However, new research suggests the rate could be as high as 1 in 3 people with ASD.
- Interestingly, about 50% of savants are autistic and have remarkable talents in math, music, language, and art.
How I Discovered I’m Autistic
So how did I discover I'm autistic? It all started when I was doing research on specific childhood behaviors that I was observing as a mom. Sometimes it's difficult to know what is normal behavior for a child and what isn't, especially in terms of social emotional development and if he or she is your first child.
In any case, during one of my late-night research sessions on childhood development and behavior, I came across an article on “traits of Level 1 autism.” I clearly remember it and thinking, Weird. That sounds exactly like me.
I brushed it off at the time, but a seed was planted in my brain that wouldn't stay dormant. A few weeks later, I kept going down a rabbit hole on autistic traits and adult diagnoses. I had a strange feeling growing in my stomach.
My Autism Self-Diagnosis At Age 40
Finally one night after putting the kids to bed, I took an autism self-assessment test online. I was expecting negative, inconclusive, or mixed results at best.
Instead, I got a resounding you're autistic result staring me back in the face. You may scoff in disbelief at the reliability of a self-assessment test. But I knew in my gut that the results were right. I've had traits of autism since my childhood.
There have been one too many times in my life when I've done or said something with purely good intentions that to my shock resulted in someone saying,
Why did you do that? No normal person does that.
Do I have to spell everything out for you to understand? Can't you take a hint?
I feel exhausted talking to you.
It can be hard to bounce back from words like that. But, fortunately I'm patient and forgiving. And I know when my intentions are good even if the other person did not.
Anyway, after taking the assessment, I started to freak out. I didn't need to get an official diagnosis to be sure. I just I knew that I am autistic. But how would I break the news to Sam? I decided not to overthink it.
I closed my laptop, went straight to the living room and spilled the beans. Sam was calm as a cucumber, non judgmental, and inquisitive.
He instantly wanted to take the same test out of curiosity. “Maybe I'm autistic too,” he said. “And if so, we can be autistic together,” as he smiled my way.
His result? Negative. He scored a 10, which was within the range of 0 – 25 for no autism.
Of course, taking a quiz to determine if you are autistic or anything else won't give you a formal diagnosis. Seek out a professional or multiple professionals if you want more concrete answers. But you likely know your past and present self better than anyone else. Go forward with whatever you feel is in your best interest.
Embracing A Refined Identity
In the months that followed, I got used to identifying as autistic. It was strange at first, but as I got used to it, I felt cool about my new identity in a geeky type of way.
I continued to read, read, and read some more. And had so many lightbulb moments about how I think, communicate, react, and don't react in life. I understand myself so much better and am happy to just be me.
Now if I have a communication mixup or find myself in awkward silence at a social gathering, I remind myself that I'm neurodivergent. Then I take a deep breath, smile, and keep on going.
I went 40 years without knowing that I'm autistic, but I'm okay with that. I've lived my whole life as me. And now I have a greater sense of self.
Glad To Keep Learning About Who I Am
With my personality, it's probably a good thing I didn't know about my ASD when I was younger. I think I would have put up mental walls on my hopes and dreams, and been less gung-ho in my career.
My focus now is forward. And I will ensure our kids have the resources and support they need whether or not they're on the spectrum.
I also haven't told anybody I have autism except Sam and those of you who are reading this post. I don't feel like my parents, relatives, friends, or former colleagues need to know. They already know me for me.
I feel comfortable sharing my story with you because my purpose here is educational. And it's also very unlikely that I know you personally lol. Thus, I don't fear judgement or awkwardness at a future encounter. You just know me for the words that I write, which I do my best to articulate, and that's what I care about most.
To A More Diverse And Neurodivergent World
I'm hopeful there will be continual advancement in research studies, diagnosis techniques, and awareness. Thus, it wouldn't surprise me if autism statistics increase in the next 5, 10, 20 years especially for girls and women.
In case you're curious about autistic celebrities, here's a short list. Elon Musk, Dan Aykroyd, Daryl Hannah, Sir Anthony Hopkins, Tim Burton, Dr. Temple Grandin (scientist and animal behaviorist), and Satoshi Tajiri (creator of Pokemon).
In addition, it's also speculated that Albert Einstein, Sir Isaac Newton, and Steve Jobs were on the spectrum, and it's thought that Bill Gates is as well.
Ever since I discovered I'm autistic, I've been kinder to myself. Sam has also been more patient and accepting.
We also joke around a lot more about my quirks and things like my inability to understand sarcasm on Twitter. Most of the time I can recognize sarcasm when I hear it, but rarely when I read it.
Look Inwards And Outwards
My surprise of a lifetime goes to show we should never stop learning about ourselves and others. There's always something new to discover. Plus, the better you understand yourself and the more answers you uncover, the more accepting you can be of other people and they can be of you too.
If you're curious to learn more, please read my other article, My Autistic Life: From Childhood To My 40s. I discuss how autism has impacted my life, include a detailed list of some lesser known autistic traits, and links to books and resources I've read.
Readers, are you or someone close to you on the autism spectrum? What are some things that you have learned along the way? For those less familiar with autism, what did you find enlightening in this post and others? Thanks for reading! – Sydney
I really appreciate Sydney writing this post. It wasn't easy to open up to the public. This post has also gone through many iterations over the weeks. I'm proud she has shared her story of self-discovery to potentially help others on their own journey.
Our personalities are very different, which is part of the reason why we attracted so well when we first met in college. And even after 25 years of knowing each other, we still have our moments of conflict and misunderstanding.
Now that I know she's likely on the autism spectrum, I try to be more clear and more serious when I'm trying to communicate something important. I also give her more time to process what I'm saying instead of get impatient when she doesn't respond immediately.
My issue is that I'm often joking around and want decisions made quickly because that is how my brain works. It would be good if I could slow down.
“To know thyself is the beginning of wisdom,” wrote Socrates. Being able to just be yourself is also a wonderful feeling. As parents, I'm looking forward to helping our children better discover themselves and support them all along the way.
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55 thoughts on “I Found Out I’m Autistic As An Adult And I’m Glad”
Thank you so much for sharing your life with us, Sydney!
You are a precious, unique creation of the God who loves you with an everlasting love.
We have some dear ones on the spectrum in our family. Brilliant and high functioning. You are right, no two people are the same, that’s why I refer to the spectrum. It’s a loving way to think of this. Unique, creative, amazing in so many ways. The struggles and adaptations of each one are truly heroic. We love you!
Thank you for this.
Hmm, 35 out of 50. And I seriously cannot be looking into someone’s eyes if I really want to understand what they are saying.
Doesn’t worry me overmuch as, if I am autistic, I would have to consider myself a high functioning one. With an IQ over 150 to help, most of my life I’ve held high-paying jobs that involved relatively little personal interaction with others. Even most of my jobs in the military were pretty much solo acts. And I really loved being quarantined and working from home.
I’ve also learned, through the school of some extremely hard knocks, how to read people a bit. And I force myself into things I am uncomfortable with. I’m stubborn that way. Pretty sure my mother was the same way. She would have been a complete hermit in her later years except that she forced herself to do some community work.
For example: I used to be utterly amazed that there were people (teachers) who could stand up in front of large groups and talk endlessly. Then I was offered the chance to teach as a member of the faculty at a large university. Although I had no idea how I could do it, everyone was quite confident I could, so I forced myself to accept because I wanted to know if it was possible. I wanted to know how it was possible. And it went very well after the first few gut-wrenching classes. Apparently, you can get used to anything.
Similarly, when I see strangers in elevators, parking lots, etc., I regularly force myself to say something, almost anything. Often I get a good response or even a laugh. And when I go through a checkout line late at night and see some old woman ringing the register, who should be at home collecting Social Security and whatever else, on her feet and weary, my inclination, as always, is to slide my card, take my stuff, and just go (lordy, I love Amazon). Instead, I force myself to try to make her laugh or at least get a chuckle; I succeed more than I fail.
I love your comment – thank you for sharing and wow impressive IQ score! Being willing to try something new to see if it’s possible is a great strength. And I love that you push yourself to make connections with people even if it’s just briefly. That’s a wonderful quality! Thanks!
Sydney, Thanks for sharing. Now that I’m more aware of autism traits, it’ll help me to be more patient with others. For instance, if someone seems uninterested, it might not actually be the case. Perhaps turning the conversation back over to the other person may reveal how engaged they are.
Sam’s desire for quick decisions resonated with me since my husband always wants time to “think about it.” Still gonna have to figure this one out since based on the online quiz, hubby is not autistic. Reading people is one of his greatest strengths and why he loves sales.
Thanks for your comment! Being able to read people is a fantastic strength. It’s something I fail at all the time. Having a strong innate ability to read people and taking on a career in sales is a great way to utilize that strength!
Sydney – thank you so much for sharing your own personal experiences about ASD – it takes a tremendous amount of courage to open up about this subject and know that you are helping so many people out by just being open about your experiences! Our 3Y old daughter was diagnosed with ASD about 2-3 months ago and could have easily flown under the radar for most of her life with ASD unless we stepped in to get her help via ABA. My question to you is now that you have a formal Autism diagnosis do you think that your life would be positively/negatively affected had you known that you were Autistic earlier in life?
Thanks Ian! Glad to hear you’re getting your daughter support through ABA! As for me, if I was born in today’s world, yes I think I would have been positively impacted if I knew I’m autistic from a young age. Research and support services have come a long way as has acceptance and a larger neurodiverse community.
If I knew at a young age in the 80s, I’m not as sure. Maybe I would have felt more lost and isolated if the support infrastructure wasn’t there to help me understand myself. Girls were just not thought to be autistic back then.
My parents did have me tested for ADHD, but I wasn’t diagnosed. However, so much has been learned about ADHD as well since then that it’s possible the tests were insufficient back then too. So perhaps I might have ADHD as well (runs in my family) but I haven’t done enough research on that yet to make an educated self-assessment right now. Something for me to look into further!
Thanks for sharing your story, Sydney. I learned a lot more about Autism. You’re very brave to face this with an open mind and heart. Cheers!
Thanks Ceci! Being able to help others with my writing, even if it’s just one person, is why I really love publishing posts. I’m a very slow writer, which is why I don’t publish articles that often. But it’s one of my favorite ways to share and give back. Getting nice comments like yours is always very encouraging so thanks!
Thanks for sharing Sam & Sydney. I hope this better understanding of yourself helps you live a happier life going forward.
As a medical professional though I feel the removal of Aspegers syndrome and move to “Autism Spectrum” disorder is unfortunate. One of the issues with this is that if you think of a spectrum or range say from 0-100, then even if you score a 1 on the spectrum you could then be “Diagnosed” as being on the Autism Spectrum. This unfortunately leads to an increase in incidence and over diagnosis of some percentage of people who may just be different or have unique interests. Also to clarify an online quiz is no means of diagnosing someone with a disorder. You would need to visit with a medical professional. The issue is that psychiatrists have a perverse incentive to diagnose people in front of them because that generates business for them and also may give their patients a sense of relief to be diagnosed. Also no physician or test is 100% accuate in diagnoses.. usually far from it.
I think the same can be said for ADHD in kids. There is no way that ADHD as a genetic and neurologic disorder has suddenly spread throughout the US to now include approx 10% of kids. The environmental factors and modifiable factors are minimized when it is labled as purely neurologic or biologic. Don’t get me wrong there is certainly a small percentage of kids who have ADHD and need medication to help them. However, I do think there is an overdiagnosis of kids and certainly an overmedication of kids. The medications kids receive for ADHD are actually pretty scary, for example Adderall (amphetamine and dextro-amphetamine) is almost identical to crystal meth (meth-amphetamine) and has similar effects including increased short term focus and loss of appetite! Again psychiatrists have a perverse incentive to diagnose kids, because that increases clinic visits as well as prescriptions for medications sold by pharmaceutical companies who lobby for changes in the DSM and prescribing practices, and in some cases indirectly compensate the prescribing physician.
I hope this post is not taken in the wrong way. There many neurologic and mental disorders which go undiagnosed so increasing awareness is key. However, I do not feel that people should be using free online quizzes to diagnose themselves as that could lead to overdiagnosis or overmedication which is already an issue for some disorders in the US…
For sure, and I agree. I will re-emphasize this point in the post. Go see a professional.
Thanks for the feedback!
Thanks for your thoughts! Always good to hear opinions from those in the medical field. Yes it’s unfortunate to think about doctors making inaccurate diagnoses and prescribing medications unnecessarily for their own monetary benefit. Hopefully doctors like that are a small minority.
Are there medications frequently prescribed for autism? I wasn’t aware of any. I have heard about Adderall though and the dangers of teens and college students getting addicted and using it as a recreational drug.
Thanks for sharing, Sam! As someone who had had issues that fall under the spectrum your piece makes me wonder if I should see someone because it looks like you’ve taken a lot of time to understand it since your diagnosis. Thanks for all you do for us!!
I don’t think it would hurt! The process of self-discovery is wonderful. It is relieving. It enables you to move forward with a clearer head and adapt. Go for it!
Thanks Eric! I think you’ll find the book “I Think I Might Be Autistic” by Cynthia Kim to be quite helpful. She discusses pros and cons of getting a formal diagnosis as well as a lot of other topics for those discovering they’re on the spectrum as adults.
Hi Sam & Sydney,
Thank you for this post. I was curious as to you have ever posted on preparing financially for a child with a disability? I am a new parent to twin 7 month old boys. We were given the news that one of our sons has Down syndrome upon birth. Similar to autism, it is a spectrum. Without knowing how he will develop we are very lost as to how to prepare financially for him. We have seen ABLE accounts that are capped at $100k. We’re not sure if a 529 is right for him and if it is worth it.
I’d be interested to hear your thoughts on this. Thanks.
Congratulations for your little ones! What a blessing!
I think the number one priority for a child with a disability is maximizing your time with him. In the initial years, specifically the first three years, you will get a tremendous understanding of your sons personalities, idiosyncrasies, and tendencies. From there, you will get a better idea of your children’s needs – emotionally and financially.
Let us think about an upcoming post on financial planning while raising a child with various types of disabilities. Every situation is different.
At the end of the day, the more money we have to be able to spend more time caring for our children and hiring people with expertise to take care of our children the better.
Best to you and your family!
My son suffers from several disabilities, and it has been an expensive journey. It seems like half of my friends also have children with challenges–we often don’t find out until much later (or never) because a lot of people understandably want to keep these matters private. What we have in common is that we are all well-off and have the resources (i.e., the money, time and know-how) to get help for our kids which may account for the high % of our kids being diagnosed for something. Besides investing/saving more, I suggest:
1. Choose your health plans very carefully and understand how to fight for services (my wife is an expert in healthcare insurance).
2. Many of my friends, despite being wealthy, send their kids to public schools because they will provide services mostly free of charge to help your child’s learning disability (e.g., tutors, minders, therapy, etc.). The pros are lower cost or free services but prepare for a fight to get your kids said services.
3. We chose private school where they don’t provide any special services but may provide more accommodations (e.g., my son is allowed to type most of his assignments since one of his conditions is dysgraphia). Also, its a smaller school where he is less likely to be bullied. We pay for all our tutors, therapists, evaluations, etc. on top of the private school tuition but it saves us the anxiety of having to battle a school district.
I don’t know much about ABLE accounts, but found this tidbit at https://www.treasurer.ca.gov/able/:
–In 2019, the following statute was adopted:
AB 91 (Burke) – Eliminates differences in qualification criteria for ABLE accounts between federal and California tax law to increase contribution limits to up to the federal poverty level and allow taxpayers to roll-over Section 529 plans to ABLE accounts.
“Many of my friends, despite being wealthy, send their kids to public schools because they will provide services mostly free of charge to help your child’s learning disability (e.g., tutors, minders, therapy, etc.). The pros are lower cost or free services but prepare for a fight to get your kids said services.”
This is an important point for parents with children who have disabilities to consider. Public schools have the resources and the willingness to help those children with different abilities. The mission is awesome.
Private schools don’t have the same resources. But private schools do often have smaller class sizes and the willingness to accommodate if needed.
Sydney, thanks for sharing this part of your story with us readers. Very thoughtful and actionable post, thank you.
Hi Stef, congratulations on your boys. My family is now at the tail-end of your family situation, with a family member with Down Syndrome now on hospice. Three thoughts you may find of interest. 1) see a lawyer and set up a Special Needs Trust. They can direct you to a LOT of resources; 2) do not set up a ‘Conservancy’ because your son with Down is eligible for many resources as long as they are independent (even if they live under your roof all their lives); 3) Check in with your city/town’s Health & Human Services (HHS) agency and they can direct you to programs that will help with mainstreaming in education (and later, work) opportunities, as well as help you with Respite Care assistance. My own experience as a brother has been that it has greatly enriched our family. Keeping good thoughts for you!
Thanks JayCeezy. Always nice to hear from you and glad t hear you felt positively about the post. Thanks for sharing your insights for Stef as well, very helpful!
Thanks for the post, Sydney. It was very well written.
I’ve for a long time (I’m 37) suspected I fall on the spectrum somewhere given the things I enjoy, the strengths I have, and my extreme discomfort in social situations. I think I finally want to pursue this more now. So thank you.
The online quiz came out to a 34/50 for what it is worth.
Thanks Travis! Wonderful to hear you’re ready to pursue your self-discovery further! I think you will find a greater and greater sense of peace and self-acceptance the more you learn about yourself and others like you who have similar challenges and strengths. It was a bit scary and anxiety inducing for me initially to face that I’m autistic, but those emotions were quickly replaced with positive ones like ah-ha’s, curiosity, calmness, and patience. Thanks for sharing!
Very powerful, Sydney and Sam. I am moved by your vulnerability and self awareness. Thanks for sharing your story and giving us all confidence to be comfortable with who we are!
Thanks Nick! as parents, we have become more introspective, especially with more time at home during the pandemic.
All we want is for our children to feel love and be loved for who they are. And this type of goodwill has translated towards appreciation for all types of people.
I hope more people will feel proud of who they are and what they have accomplished.
Thank you for being brave enough to share, you have helped me.
I think I just had my own lightbulb moment and the test seemed to agree. I also think I just now understand why some of the things I do that drives my husband crazy but confused me as to why?
I like you had the same reaction to the bend over backward ect…I’ve always seen words. Reading a good book is like watching a movie in my head but a total immersion.
I was a toe walker, I’m an obsessive details person, planner, I preferred male friends to female for the most part, am often in my own world (inside my head), cannot stand competing sounds, hate big groups when socializing, I am very literal and speak bluntly. All that said I realize that I am masking when I interact with others unless it goes on too long -then I’m exhausted and literally need a nap
Knowledge is power- thank you again
Hi Sasha! Lightbulbs!! I’m so moved to have helped contribute to your own self-discovery. Here’s to a new and better understanding of who you are! Welcome to neurodiversity! So many things are going to make so much more sense now and going forward. It’s pretty incredible.
I was so happy to read this post; thanks for sharing your story, Sydney! I too, came to realize in my early 40’s that I am on the neurodiversity specturm through observing and wondering about my daughter’s behavior. Although I was labeled “gifted” as a child (a label that unfortunately carries with it much stigma and does not often evoke understanding from others–I do wish it was called something other than ‘gifted’), it wasn’t until my daughter started exhibiting similar tendencies that I discovered that gifted = neurodivergent, just like Autism, ADHD, dysgraphia, etc.!!! Which explains SO many things about me!
Unfortunately, this just wasn’t common knowledge in the 80’s & 90’s when I grew up. Just like many who are autistic, I struggle with sensory overload, social conventions, disruptions to routine and hyper-attention to detail. Knowing that my brain actually developed differently and behaves divergently is so empowering and affirming. And of course it is helping me to better understand and support my daughter in her journey, which I am so grateful for, given that she can move through her life with a deeper understanding of how her own brain works and how to support herself.
Wow thank you for your comment! I am so grateful to hear from people like yourself who can really relate to what it’s like. Struggle with sensory overload – check! social conventions – check! disruptions to routine – check! and hyper-attention to detail – check! I have all of those same challenges!
I’m glad you were able to recognize traits in your daughter and can advocate for her plus teach her how to self-advocate and learn how to embrace her neurodiversity!
Thanks for the article. It is always good to be reminded on the differences in how we think and feel. We are raising a 15 year old boy with Autism and ADHD who was diagnosed around age 3. Family therapy helped me become a better parent by accepting my son for who he is and to stop trying to make him do things he is not capable of doing. By doing that our home is more peaceful and less stressful.
Thanks for sharing your experience. Letting go can be so hard, but sometimes it’s the best way forward. Your son may not have said he’s thankful to have you advocating for him since a young age, but he definitely feels it in his heart. You are doing an amazing job as a parent! I’m really glad to hear that family therapy has been beneficial and helped reduce stress.
Welcome to the neurodivergent community!! I too am self diagnosed about 4 years ago in my late 20s/early 30s. And it was a complete “light bulb” moment when I took the self diagnostic test!!! It’s difficult to find a physician that specializes in female autism diagnostics since most of the testing is geared toward men/boys. But having the knowledge of why somethings, like patterns, are so easy for me to pick out and other things, like written communication, is soo hard for me to understand; knowing my brain makes living day to day easier.
I am wondering if you have this similar experience growing up: it is easier to be friends with men vs women, unless those women are also on the spectrum… or alternatively having just a few close friends?? Especially during teen-20s
In the end, I am glad that I am neurodivergent, it made me who I am, yes somethings are harder… but everyone (neurotypicals included) has deficiencies somewhere! Everyone’s brains are different, ours are just a little extra!
Thanks for sharing and speaking out about your experience! The community always needs more positive voices ❤️
Yes, totally relate about the lightbulb moments! Thanks for coming forth and sharing your experiences!
When I was maybe 6 or 7 my best friend was a boy in my class at school. Other than that I’ve only had close relationships with girls or women during my childhood, teens, and 20s. And usually just one or two close friends at a time.
Maintaining friendships has taken much more effort for me than most people, especially since I finished school. So I have to push myself to make the time and effort. It’s worth it though with the few friends I really connect with and feel comfortable around.
Wonderful post, Sydney and Sam. Thanks so much for enlightening me.
thanks. can you please post a link of the test you took.
Here’s a link to one available online: https://psychology-tools.com/test/autism-spectrum-quotient
I am grateful to know and love many people on the autism spectrum and am glad you’ve used this forum to raise awareness. Too commonly those who are different are shamed when they should be celebrated. Thank you for sharing your story!
Thanks Joanna! Great words! “Too commonly those who are different are shamed when they should be celebrated.”
I wonder what Jerry Seinfeld would have to say about being labeled autistic? He probably would just say that he doesn’t really like that many people.
I did some further reading and it looks like in an interview with NBC’s Brian Williams he said
“I think on a very drawn-out scale, I think I’m on the spectrum. Basic social engagement is really a struggle. I’m very literal; when people talk to me and they use expressions, sometimes I don’t know what they’re saying. But I don’t see it as dysfunctional. I just think of it as an alternate mindset.”
But after some social media backlash about his self-diagnosis Seinfeld later told Access Hollywood that he is not on the spectrum.
So I suppose he isn’t autistic after all or perhaps felt so much social pressure he decided to publicly dismiss his thoughts. But, he does relate to some of the traits.
Thank you for sharing! Disclosing to the world is no small feat.
I personally appreciate this article because my son was diagnosed ASD at 18 months. He is 4 now and is one of the smartest people I have ever met. He taught himself how to read at 3 and is now reading at approximately a 3rd grade level. He knows more about the solar system and the ocean than most people will ever know. His pre-k teacher greeted him one day and instead of saying hi, he responded, “the sun is made of hydrogen and helium” and went inside the classroom. He has and will have a lot of challenges, but he is such an amazing kid, I wouldn’t change anything about him.
His diagnosis not only forever altered our personal lives, but my career as well. I now work for a non-profit that works with employers to connect them with neurodivergent candidates (https://www.us.specialisterne.com/). 8/10 Autistic adults are either unemployed or underemployed. We typically work with those that are highly educated and skilled, but experience barriers in the traditional recruitment process (face to face interviews are an easy example). Many of the candidates that I place go from unemployed to making more than I do! It’s tremendously rewarding.
Thank you again for sharing and bringing awareness and acceptance to this community.
Wow that’s incredible! What fantastic interests to have. Does he know about the largest stars? Our son got so excited when he found out they have some of the coolest names. And it’s quite mind boggling how vastly they range in size! https://en.wikipedia.org/wiki/List_of_largest_known_stars
Thanks for sharing the link to your non-profit, that’s amazing! So glad to hear there are organizations like yours that spread support for neurodiversity!
Yes it is amazing. We’ve started watching size comparison videos on youtube and it just boggles the mind.
Believe it or not he does know the biggest stars. I always lose it when he gets to Stephenson 2-18 lol.
Thank for sharing. I hope the world continues to gain a better understanding of you and all of the people on the autism spectrum who may think differently, but are also wonderful. If no one thought differently, the world would be a pretty boring place. Here’s to having the courage to be ourselves!
Thanks Drew, so true!
Wow this article was so insightful. Thanks for sharing something so personal and also covering a lot of facts unknown to me.
There isn’t anyone in my family who has autism that I know of, but I’m pretty sure one of my colleagues is autistic based on reading this and your other post. I’m definitely going to be more patient when I talk to him going forward.
A couple years ago one of my neighbors told me her now 12 year old son is autistic and goes to a special school that has a really good support system according to his mom. I see him taking walks by himself sometimes around the neighborhood. I always say hi and wave to him but he doesn’t always respond back. That makes a lot more sense now.
Thanks for sharing!
Yes my experience has really opened my eyes in so many ways. I too can think of a couple people I’ve gone to school with, worked with, or interacted with who are likely on the spectrum. I didn’t understand what the spectrum was back then or why their behaviors were the way they were, but it all makes so much sense now.
I really appreciate Sydney writing this post. It wasn’t easy to open up to the public. This post has also gone through many iterations over the weeks. I’m proud she has shared her story of self-discovery to potentially help others on their own journey.
Our personalities are very different, which is part of the reason why we attracted so well when we first met in college. And even after 25 years of knowing each other, we still have our moments of conflict and misunderstanding.
Now that I know she’s on the autism spectrum, I try to be more clear and more serious when I’m trying to communicate something important. I also give her more time to process what I’m saying instead of get impatient when she doesn’t respond immediately.
My issue is that I’m often joking around and want decisions made quickly because that is how my brain works. It would be good if I could slow down.
“To know thyself is the beginning of wisdom,” wrote Socrates. Being able to just be yourself is also a wonderful feeling. As parents, I’m looking forward to helping our children better discover themselves and support them all along the way.
Thank you for your support! Yes it took me a crazy amount of time writing this post and the second one too. But I enjoyed every minute writing, researching, and fine tuning them both. Great quote!
Me asking you to go to the hearing doctor due to what seemed like so many delayed responses and misunderstandings or my inability to articulate is now an ah hah moment due to the discovery of autism.
I didn’t quite understand why you couldn’t understand some of the questions I asked you. But now I do and am more patient and try to be more clear!
Sydney, thank you so much for opening up. My youngest son has Asd. We got his diagnosis 2 years ago when he was two years old. Knowing, meant we had a direction to get resources and learn how best to serve Jimmy, get him to a comfort level with his differences in a very structured and social world, but also to educate others. As a mom, I feel for you not knowing for so long, but figuring it out through life. As a mom, I also know that knowledge of the brain divergence will help remove the stigma, and people with autism will be just another category and difference.
Sam, I’ve been following you for about 6 months and you have been incredibly helpful in helping me in my financial independence journey. Because of you I have been driving more into real estate and tracking finances on personal capital. We are driven by our goal to own our own time, but also to ensure a legacy so our kids will be ok.
I applaud you guys for opening up about your family and who you are. Finance is personal. Now, I not only want to follow you for the finances but because you are great people.
Keep changing the world guys!
Thank you Natalie for your kind words. I’m very glad you got Jimmy’s diagnosis a couple years ago to provide him the best accommodations.
Life is quite a journey isn’t it? Here’s to your financial freedom!
Hi. I am glad that you finally got some type of diagnosis that you are and/or were on the spectrum.
I was born in ‘74. I too, at least what I believe, am still on the spectrum, but was never formally diagnosed despite being called hyperactive and other terms but never with a formal medical diagnosis. Perhaps it was because of the lack of information. I was thrown in with developed peers and “had to deal with it”.
I have a 7 year old ( a twin ) boy who had an IEP since 2.5 years who is formally diagnosed with autism. Early intervention is key. Otherwise he would turn out like me. Not enough trained folks to deal with autustic folks. ABA is a good augment. The problem is not with autistics. It is with people who do not understand them.
I truly believe the MMR immunization series accelerated his autism – if I would have waited until he was older, it would have not been so severe. He reacted very badly to them.
Great post. Glad you wrote this.
When you say, “he would turn out like me,” what do you mean?
I thought this was a good article on research about MMMR immunization and autism.
Thanks for sharing your experience. Yes, the understanding and diagnosis process of autism was very different when we were young children. A lot has changed with ADHD as well (commonly co-occurring with autism) which was updated from ADD to ADHD in 1987.
I’m hopeful we’ll learn a lot more about both in the coming decades to help current and future generations.