Why Late Autism Diagnosis Matters: What I Wish My Family and Friends Knew

Late autism diagnoses are becoming more widely shared and many loved ones are left with questions. This video was made in response to a community member who asked for something they could share to better articulate the importance of late diagnosis to their family and friends.

Topics covered: imposter syndrome, masking, sensory overwhelm, self advocacy, and more.

Please share this video to help spread acceptance and support for the autistic community.

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DISCLAIMER: Taylor Heaton is not a licensed psychologist or specialist healthcare professional. Her services do not replace the care of psychologists or other healthcare professionals. Please note that Taylor can’t take any responsibility for the results of your actions, nor any harm or damage you suffer as a result of the use, or non-use of the information available through her website, YouTube Channel, or social media accounts. Please use judgment and conduct due diligence before taking any action or implementing any plan or practice suggested or recommended by Taylor Heaton or Mom on the Spectrum. Please note that Taylor doesn't make any guarantees about the results of the information you may apply from her website, YouTube channel, and/or social media accounts. Taylor shares educational and informational resources that are intended to help you succeed in navigating life as an autistic adult. You nevertheless need to know that your outcome will be the result of your own efforts, your particular situation, and innumerable other circumstances beyond Taylor's knowledge and control. Taylor is an Amazon affiliate and may receive commissions on qualifying purchases from affiliate links. Taylor is a Flare affiliate and may receive commissions on qualifying purchases from Flare links.

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#actuallyautistic #momonthespectrum #autisticadult

[MomontheSpectrum]

One thing I forgot to add to the discussion... it seems for many autistic adults that there is a SHIFT that happens - once you "see" autism in your life you can't "unsee" it, and the ways you used to mask now become even more painful because you innately understand what it COSTS to continue masking in certain ways. It might not be anything you can articulate with words, but you KNOW in your inner being that you simply cannot continue functioning the way you used to.

[relentlessrhythm]

I went from literally hating myself because I felt like a failure in life to accepting myself instantly when I found out I was autistic.

[RobinPalmerTV]

I spoke with a woman who got her diagnosis aged 80. She said it helped explain every single thing that happened to her in life which was exceptionally chaotic and she could forgive herself.

[CajunCraft]

Diagnosed at 50. Everyone says it comes as a huge relief and while it explains SO MUCH, I went into a complete identity crisis. I’ve spent my entire life trying to figure out what was wrong with me, and fix it. There’s no fix for this, other than acceptance. And I’m so angry over all the misdiagnoses and unnecessary medications I’ve been thru over the decades….

[onemanfran]

I haven't been diagnosed but when I was learning to drive at 27, after frequent meltdowns my teacher, who was also a therapist, told me to pull over to one side of the road and asked me the simple question "have you ever been diagnosed with autism?". I mentally filed that away until I was 36 and when working in a school a coworker gave me a sheet from her daughter's autism diagnosis. I read the whole thing. It was me. It made so much sense. I cried for all those lost years. I feel like I understand myself so much better now but I have still masked and repressed myself so much that I have lost so much of who I am as a person.

[surlespasdondine]

The prospect of getting this confirmed is both exciting and terrifying. What if I test negative despite my being 99% sure? I have been feeling so ambivalent since learning about female autism because a. "omg this is me" and b. "What if I'm wrong?" Btw I hate most comment sections on yt but those under autism videos are full of thoughtful, empathetic people. Makes me feel at home.❤️

[Akcdr]

Covid lockdowns were my wake up moment, I was actually happier when everyone was FORCED to stay out of my personal space and to stay quiet. I went down the rabbit hole at that point and have learned so much since. I feels good to honor yourself for who you actually are.

[spankmcnasty]

Your description of the mental torment suffered by autistic people was spot on. I was diagnosed two years ago at 55. I'm still coming to terms with the diagnosis. It has been revolutionary for me and I am still working at discovering who I really am because I masked and faked my way through life.

[cecile-p]

Being late diagnosed (41), it seems to me my closest family members are less accepting than strangers. They always knew me masking, they tend to forget all the problems (there were a lot) in my childhood that were never explained, and they don't take time to wonder about this topic. I tried to explain, at the beginning, but with no result, and I got tired of it. In the end, I'm masking a lot with my family, and less with strangers (who show more curiosity).
English is not my first (or second) language, I hope it's understandable...
Thank you for your videos, I like them very much !

[mishastack]

YES YES YES! I’m 54, self diagnosed and I love this video!

A couple of friends and family members have expressed “concern“ about me talking openly about my self diagnosed autism. This explains more eloquently than I could why I need to keep bringing it up. Why I keep watching videos about autism and ADHD. They can’t conceptualize what it’s like to suddenly understand myself. It’s overwhelming, exhilarating, a little bit scary, kind of all the emotions all at the same time.

Autism answers so many lifelong questions: why am I not good at being a friend? Why do I have such a hard time doing certain things like returning phone calls, getting certain tasks done (that I now understand require spoons that I don’t have left), generally struggle to interact with the world the way everybody else does?

It’s such a relief to finally be getting some understanding of why I am the way I am. I’m learning a lot in the process, and finding ways to overcome some of the things in my life that I find uncomfortable or challenging.

[alisonwall]

I'm terrible for gaslighting myself. I had such a bad migraine on Friday that I had to leave early. I needed to be in a place without sensory input. Even then though, I was like "is it really that bad?"

[johnfrieman]

Talk about late, I was diagnosed at 62 after a four decade career in engineering. One of the best managers I ever had told one of our customers "you might not like what John says and you might not like the way he says it, but you have to listen to him; because he is usually right." That was two decades before I was diagnosed. The book "All cats have asperger syndrome" by Kathy Hoopmann was the key to my being diagnosed. It showed all of the things I was experiencing in the traits of cats. I have lived with and studied cats all my life. My avatar is Chips, he is my smoke Egyptian Mau. I am still trying to process all of the meaning of this diagnosis, but just knowing why I am "odd" makes a world of difference.

[cwlodarczyk]

I was diagnosed with ADHD in my late 20s and it changed my life. 20 years later I've learned that I'm also autistic and suddenly the struggles I've had over the course of my entire life have become so crystal clear. It's like a new sunrise and suddenly being able to see the entire landscape. Thank you so much for this video and the wonderful summation of so many of the things I've been feeling over the past year since discovering my difference

[sumeveruakn]

It's also very important to note that being autistic comes with a high chance of also having other conditions like ADHD, OCD, etc. and that after we've put in the research, we usually know how our condition(s) affect(s) us very well. Respect what the person tells you, there's nothing worse than being gaslit by someone you trusted with this knowledge. The damage to both us and the relationship itself can be irreversible.
I'm 27, I have worked for about 10 years of my life and yet I still use cue cards with pictures every morning and evening so I don't forget parts of my routine like brushing my teeth. I've been told by someone I can't be autistic because I "have my life under control". I don't. I work, I go to uni, but I regularly lose track of things, straight up forget appointments, deadlines and I'm tired of having to explain that I don't struggle on purpose to get attention. That wouldn't even make sense since I struggled in silence for most of my life.
I've been on a journey of self-discovery for nearly 2 years now and it's hard. Grieving for what could have been is a process that might never end and I know people loving us don't want to see us struggle, but we need to work through it at our own pace. Just ignoring trauma (that most of us have due to, e.g., being told our experiences are invalid for most of our life) doesn't work, it's a recipe for mental illness.

[meridoughten]

I LOVE that you made this video to discuss adult diagnosis!!!! YAS!! On another recent video, someone mentioned their psychiatrist told them it wasn't "worth it" to pursue diagnosis, and I thought that advice was so sad :( Because ND, esp. autism, has historically been so stigmatized, I think professionals still default to this type of thinking. They *think* these labels are bad and harmful to individuals, but in reality, diagnosis often has the opposite effect. Accurate diagnosis is often the first step toward greater self-awareness, resources, and meeting other ND folks to develop a sense of community.
I wish NT folks understood that people who *are* ND experience the signs, symptoms and effects of the condition(s) *regardless of diagnosis*. This is why diagnosis is usually a joyful occasion for us!! It’s not the end of being neurotypical—we never WERE neurotypical—it’s the beginning of finally understanding ourselves.

[remygallardo]

Being late diagnosed as well (28, nearly 33 now) the most important thing is getting to the stage where you begin to feel like you're getting "more" autistic in your understanding of yourself and coping. You've touched on that topic in a prior video I recall, but for anyone here in the comments, that stage is incredibly important because that is a hallmark that you're actually finally beginning to live your authentic self and letting go of masking and habits you've internalized that prevent you from loving yourself. It took me four years to get to that point and in the past year I've finally begun to delve into hobbies, and able to focus really intensely and make incredible feats of learning and progress in those hobbies (painting, in my case) which I felt was literally impossible to me in the past. I may have to schedule more things and manage my reactions to things more carefully but I would never want to return to the ignorance I lived under before this. I was experiencing panic attacks on a near daily basis, flirting with high blood pressure and putting myself at risk of heart attacks and stroke from intense anxiety and stress. I am much happier and able to be present in my life and look on the future with some measure of optimism. I wish that for everyone, neurodiverse or not.

[vanessarosskopf]

I‘m in the middle of the process of getting my diagnosis, I’m 19. I’ve never felt so understood before. I can’t wait to get my diagnosis. Thank you for raising awareness to autism. It means a lot to me <3

[StaceyUncluttering]

When you said “a piece of the puzzle” I thought - it’s like we have been trying to put a puzzle together but the plain, back side up. Then, we get this word (autism) for why life has been so hard and flip the puzzle over and suddenly it all makes sense.

[TheWilliamHoganExperience]

I'm 57. I was formally diagnosed less than a year ago. Everything you say here rings true. I sum it up like this: Autism a semi-rare nuerological condition that requires support. You can't get support for autism if you don't know you are autistic. The reason I sought formal diagnosis was to confirm my own research and self asessemnt, the suggestion by others that I might be on The Spectrum.

The formal diagnosis confirmed level 1 autism. I was born autistic and I'll die autistic. Like every human being on earth I have strengths and weaknesses and sensitivities and insensitivities. Like every other human being on earth I struggle to communicate my thoughts and feelings to other people. The difference lies in the character and intensity of these sensory, social, and commucation abilities and deficits. My profile is extreme because I am autistic. If my needs are suppoprted I'm able to connect with and participate in the world and contribute profoundly beautiful things.

Before I knew I was autistic, the world was a hostile and threatening place to me. It still is - but I no longer hold myself responsible for it.

That my Autistic friends, makes ALL the difference.

My current self care dictum is this:

"Don't fight your autism. Lean into it."

Autism is a force of nature. Fighting with your own autism is like having an emotional autoimmune disease.Self attacking self. But there's a way out. Embrace your autism. Welcome it as the beautiful gift it is. You are EXCEPTIONAL! Yes - exceptional. You are here because human evolution selected for you. You and the genes you carry confer a survival advantage to our species becuase of your autistic gifts and other traits. Don't blam autism for the abuse and confusion and pain you feel. Blame ignorance and human cruelty. Not autism. Without autism there's be no great art. No science. No engineering or poetry or architecture or music. Autistic people are responsible for most of the most imporant advances in human history. Sir Issac Newton. Nietsche, Albert Einstien - all autistic from what I know about them.

Following this new autism positive paradgym has resulted in the greatest period of personal growth, insight, and creatiove productivty of my life. Try following your autistic muse, and see what happens. If you are at all like me, your inner life will get better. MUCH better. As long your support and sensory needs are being met, and you have food, shelter and clothing, you'll find youself in the promised land.

So lean into it!

It is a matter of survival. Remove anyone from your life who's not 100% supportive. They are dangerous to your wellbeing. Demand love and support from those around you, and give them love and respect in return - but only under circumstances of mutuality. And remeber: Actions speak louder than words.

[benediktornhjaltason]

It's interesting how you said the mental chatter subsided. I'm 39, discovered my autism just a year ago, and just received my official diagnosis. It's been blowing me away lately that I've been mentally monologing a lot about how I function, as if to "explain myself" to others.

And the remarkable thing is that I recognize I was actually explaining very specific autistic traits, BEFORE I knew anything about autism.