Autistic Adults who aren't Diagnosed

Hello! I'm Anne MacMillan, MLA, a neurotypical consultant and coach who has a lot to say about autism and marriage.
Many older adults weren't diagnosed with intelligent high-functioning autism as children because Asperger's wasn't put into the DSM until the 1990s. As a result, we have many adults in our communities who are one the spectrum who don't know they have autism. It is common for them to not believe that they have autism when a loved one says they might and many of them resist adequately cooperating with getting a diagnosis.
Marriage therapists need to be more aware that neurodiverse marriages exist and that some percentage of the couples coming for counseling are neurodiverse, regardless of whether or not one of the partners has been diagnosed.
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[@joeminella5315]

I am 82 years old and just recieved my autism assessment yesterday. It's never too late!!!

[@neurodiverseconnection]

Wow! 82!!!! How does it feel?

[@joeminella5315]

Still processing! lol@@neurodiverseconnection

[@joeminella5315]

@@neurodiverseconnection lol I'm still processing. It feels good because I've felt this huge question mark hanging over me since I began to suspect I might be on the spectrum. Now I feel "unstuck". I feel freer to be myself than ever. I feel good.

[@neurodiverseconnection]

@@joeminella5315 Love that! I’m so glad you found out!

[@ComplicatedSimplicite]

I am so happy for you 🙌🩷

[@CuteCatsofIstanbul]

I've felt like an alien all of my life - so much so that, I called myself 'a cat' starting at age 7 because I didn't understand humans or human interaction but cats? I could totally and truly be myself. I've sadly been single almost all my life, so no spouse and no best friend who knows me inside and out, life can be quite lonely .... but again cats (and all non-human animals!) come to the rescue.

[@neurodiverseconnection]

Cats 🐈 really are fantastic animals!

[@crazydave1145]

People suck, I have a pack of dogs

[@rachelnyberg302]

I wish I had dogs ❤​@@crazydave1145

[@yourmybeans]

I pretended to be a snow leopard all through 3rd grade 😂 to the point I had other kids meowing too 😂

[@victoryamartin9773]

I totally relate. No friends who get me, no intimate partner, makes it even hard to pray, dying of loneliness; but I have 3 cats that sleep with me, 3 dogs, 3 horses, a Cockatiel, and an Albino Catfish who love me and are always waiting for me to get up and feed them in the morning.

[@wisecoconut5]

I was 54 when I figured out that I am autistic. To me it was a relief! Instead of just being a weirdo with a miriad of difficulties, I can acknowledge and persue knowledge and life strategies.

[@neurodiverseconnection]

That’s the response to all of this that helps people find success.

[@MrMooAndMoonSquirrelToo]

It's also extremely hurtful to grow up and live thinking nothing is different with you, even though you can't function. I'm just now going through the evaluation process in my mid 30s. I'm having to work through a lot of shame and guilt along with having to relearn who I am from the ground up because of people pleasing and subconsciously masking for decades. It really takes a toll on the person. I don't blame my parents or schools or anything for not getting diagnosed because I was a '90s kid. There is so much more information on the subject out there today. I just hope we all can raise awareness so no more autistic children go through what I did.

[@SmallSpoonBrigade]

Yes, I lived for decades with the feeling that there was this evil monster trapped inside that needed to be kept there at all cost. I now understand that it wasn't evil it was me. And the reason for the "evil" behavior was mostly beause the people around me screwed up so badly at protecting and caring for me that I had to do some pretty screwed up stuff and being autistic, I was always sort of just guessing at what the actual consequences of what I was doing. I knew previously that I had significant autistic traits, but due to having other competing diagnoses, the evaluation was inconclusive and I'm in the process of getting reevaluated as it's clear that at least one of the confounding diagnoses doesn't apply, even though I'm definitely still got the same traits that I did then. Being able to forgive myself for the mistakes I made which were frequently not even my fault and forge a better future is a kind of freedom that I didn't really ever expect to have.

[@neurodiverseconnection]

Yes, I hear stories like yours all too often and am close to some autistic people who have been similarly let down and hurt. I'm sorry and sad all this happened and hope the professional community can catch up more quickly.

[@neurodiverseconnection]

Yes, too hard and so confusing. I really hope, too, that more awareness will alleviate some of the hurt that comes from not understanding what's going on. Maybe we're getting closer to professionals beginning to grapple with what's happening with adults.

[@SmallSpoonBrigade]

@@neurodiverseconnection I think that as time goes by and more awareness is generated that things will change for the better. Some ASD related problems do need better treatments, for example those that forget to satisfy their life necessities like eating, drinking and toileting. But, much of the rest of the stuff can be handled with learned strategies and redesigning the local environment to be more ASD friendly.

[@neurodiverseconnection]

I am really hopeful, too. I do think a lot more relationship information needs to be provided to level 1 autistics who have higher than average levels of intelligence. There is a big relationship disconnect that I think exists because almost no one is translating the neurotypical world into autistic language so that autistic people comprehend what that disconnect is. It seems we could be a lot more conscious about trying to do that so that all of this neurodiverse communication makes more sense.

[@whenpigsfly3271]

I'm 64 and just now finding out why my life has been stunted, starting in grade school in the 60s. Now, anxiety, depression, and suicide are my biggest issues. Learning about ASD has given me a glimmer of hope that I can begin to cope with this social deficit. Thanks for the video it was very helpful.

[@neurodiverseconnection]

Hug.... I am so sorry. And agreed. I grew up in a neurodiverse family where there was so much confusion and none of the issues could be properly addressed because the autism wasn't recognized. I am glad the world of psychology is beginning to figure this out and hope you're able to start finding real solutions.

[@markwood1159]

I'm in a very similar boat, but about 10 years younger. I learned about Asperger's about 15 years ago and even spoke to therapists about it, but the two therapists I've spoken with about it both assured me that I definitely don't have Asperger's/autism; that stopped me from exploring the possibility until recently. I'm revisiting the idea now, and I'm almost certain those therapists were wrong. So many of my struggles suddenly make sense, and the more I learn, the more certain I am.

[@breeinatree4811]

I'm 65 and was just diagnosed with autism this year. Ive felt the same way my whole life. It helps to have a diagnosis. I don't feel so bad now that I understand that there is a reason for how I feel. Please be gentle with yourself.

[@andyx7013]

@@breeinatree4811thank you for commenting and posting this, I am 28 and I have been searching for why I am the way I am for the last 18 years and my family has always told me that everyone is different no to not worry a out a diagnosis. While I do understand that everyone is different and I can appreciate that. You comment has helped make me feel better about consulting a doctor on if I have ASD. Thank you very much.

[@breeinatree4811]

@@andyx7013 There's something about knowing why your having problems that makes things a bit easier. Please dont commit suicide your here for a reason, and it's not suffering. Keep up your strength.

[@torontofenderjunkie]

There's some good points here. My late wife told me multiple times, in many ways, over a period of years that I was autistic. I refused to believe her. When she passed at the end of last year and my world fell apart, it came out in therapy. I was suddenly missing the support of all the things she used to do for me that I wasn't even aware she was contributing to my life. Point here is if you have a partner, or someone close to you, telling you to consider this/look at this - just listen to them. I wish I had and wasn't finding this out instead at middle age at a time when I can't even thank her for 2 decades of support. Trying to tackle grief/widowhood and also educate myself about this at the same time so I can get through this is overwhelming and, the second part of it at least, was avoidable.

[@neurodiverseconnection]

Thank you for sharing this wisdom. I’m sorry you’ve had to go through so much.

[@charlotteinnocent8752]

I am 48, my childhood was hell. My mother actually had one person tell her he thought I had Autism or ADHA when I was very young, and she said she didn't want me "institutionalized" and I wasn't a "retard". I was never to talk about it in case someone else said it. My mother wasn't that bothered, I was the eighth child of nine, and at least one of us was bound to be "different and difficult". I got above average grades, which was terrible because said older siblings were the best in their classes and I wasn't good enough. I was extensively bullied and I never said a thing, other than to ensure the bullying stayed with me alone and my sisters were left out of it as they shouldn't have to suffer, they had friends and should have normal lives. When one girl did befriend me, I caught my bullies targeting her and asked her to please find another friend so she would not be hurt. My son didn't speak until he was 6. His Autism was obvious. His intelligence is so far beyond my own as the stars. He starts university in September. But I still hesitated to call myself possible Autistic. After all, there are so many adults now saying that they are "a bit on the spectrum" that those who have a diagnosis are incensed and enraged that others might be making light of their diagnosis. I don't want to hurt anyone or step on their toes. I will never seek a diagnosis. I live for my children, and I will not waste precious time or funds on this. But I think I really am. The siblings I trust the most have been telling me that I am for years. I just want to feel that I am okay, that I am not a retard, a wierdo, a freak, etc. My husband loves me as I am the silly fool

[@neurodiverseconnection]

Thanks for this reply, and for being so authentic. I am horrified by this, "When one girl did befriend me, I caught my bullies targeting her and asked her to please find another friend so she would not be hurt." I am so sorry. I am also a Montessori teacher and I have dealt, first hand, with what can happen when autistic kids don't get the support and diagnoses they need. And I am bothered, too, when I hear neurotypical people say, "I am a bit on the spectrum, aren't we all?" while I am thinking, "No, you're not at all autistic" and, "That's a misinterpretation of all these descriptions we use to define autism." They're really misunderstanding autistic people and themselves when they say it... to everyone's detriment, I think. Thanks again for sharing. Not worth your time or money to seek diagnosis now, I agree. I'm glad that you have some siblings you can trust. xo

[@WPVanHeerden]

I've been accused of having all kinds of personality disorders, being diagnosed with ASD at age 53, really helped me make sense of who I am. Great to know that there are many things that are normal for people with ASD, that really freaked me out about myself, now it's a bit easier to deal with.

[@neurodiverseconnection]

Yes, finally getting real answers has meant everything. I wish there were more information out there about what to do now, but understanding is a good starting place at least.

[@WPVanHeerden]

@@neurodiverseconnection I realise that nothing has changed, but I can "relax" about being tense, let things go if they don't make sense, stop beating myself up for being so "different" because now I am part of a community where weird is normal, if that makes any sense. Easier to be in the moment now, not too worried about what I did or said in the past, or might say or do in the future anymore.

[@crazydave1145]

​@@WPVanHeerden Im still debating "another" diagnosis & label. I scored so high on the self tests, it's obvious to me now.

[@WPVanHeerden]

@@crazydave1145 After trying to avoid lables so long, this one is a perfect fit and it also kind of gives me a "community" or "tribe" something I never experienced before. Just saying.

[@markwood1159]

@@WPVanHeerdenI've been going back and forth about whether I need the diagnosis myself, as well. I'm also 53 and about as certain as I can be without being "officially" diagnosed. You feel like you got significant benefit from the diagnosis that you couldn't have from self-diagnosis?

[@Renee1983]

I’m 40, and I was diagnosed last year. Throughout my childhood I knew I was different from the other kids. I was relentlessly bullied, my likes were different, and it was very difficult for me to comprehend and communicate. I’d rock back and forth and my speech was delayed as a toddler. I’m not sure how the doctors didn’t pick up on my symptoms. Throughout my life I’ve been abused by family members and spouses because they didnt understand me. I have trauma from all the abuse. Now that I know what’s going on I’ve taught myself coping skills to deal with the symptoms when they get bad, but as I age the symptoms have gotten worse, and being a single mom to three kids doesn’t help. I feel bad when my kids want to go out but we can’t because I’m having an autistic shut down because I over did it the day before. I’m unable to work a full time job, so as of right now I have a part time job caregiving for my mom, and that’s actually nice because she doesn’t need me all the time, so I’m able to take care of my kids and rest as much as I need to. Autism takes a lot out of me and I wish people understood what I was going through. I’ve had to cut ties with toxic family members because they won’t stop verbally and emotionally abusing me. My therapist taught me about safe people vs unsafe people and the importance of boundaries, and it’s helped me a lot. I also had to leave the Christian community, because the teaching and people were having a negative effect on me. I now practice Wicca and it’s better for my mental health. Also, my mom and I are pretty sure she has Autism too, because she’s struggled a lot in her life. Like me she was unable to keep a job, it’s difficult for her to comprehend, and she’s been abused by family members and my dad because they didn’t understand her. I wish people would stop being judgmental when someone is different and keep in mind that maybe that person is struggling with something.

[@rcovel1960]

I'm 63, with a wife of 41 years. If I hadn't went in the Air Force, and sent to the Philippines, I'm not sure I could have found someone. It's hard to explain, but we've never had any deep conversations. Somehow she has always loved me, even when I spent years drinking myself unconscious. This whole autism thing never entered my mind until my first grandson was diagnosed on the spectrum. I started taking online evaluations, and scored high for ASD on each one. Well, at least now I understand why I have always felt out of place. There is a line in an old song that goes, "... everybody's on the stage, and it seems like you're the only person sitting in the audience...". Describes my life.

[@neurodiverseconnection]

I hope that you are able to find any answers you’re looking for.

[@desertdarlene]

I have to say this is what is happening to me. When the term Asperger's came out, many people told me that they thought I had it. However, I didn't see it. I thought I was just like everyone else, but I had some compulsions (like talking too much) and anxiety that were off-putting. I had a hard time finding a full-time job outside my home and couldn't figure out why. However, now that I'm working full-time at a highly social, public-facing job, I really can see my deficits. I had zero idea I struggled with social communication all my life. I miss nearly all external social cues, and most people totally miss or misinterpret my social cues even when I thought I was being very clear. I basically get told off and criticized every day for something social. I could never figure out why I gave out certain "vibes." I thought everyone had these problems. Now that I've met and gotten to know some autistic people, I can definitely see myself in them. I'm still not ready to be diagnosed, but I am starting to feel like I should, just for the sake of something that comes up in my job.

[@victoryamartin9773]

I can relate. Was slow to fit in socially, still am at 68. Just thought I was missing some social skills from childhood. Got fired from almost every job; finally gave up trying to have a career. Undiagnosed, but I have enough traits to self-identify as Autistic. I can finally let the mask down and just be me.

[@jsfoster100]

Hmmm. If your on the spectrum you know you are different, perhaps not why you are different. Receiving an autism diagnosis at 77 was as big relief. It answered many of my questions about my life.

[@neurodiverseconnection]

That makes a lot of sense to me.

[@matthewhoffer5116]

Great video. I dated a woman for 2+ years and I couldn't understand her. Sometimes she would act so self centered and cold and other times so caring. She would have melt downs, miss social cues and sarcasm, and thought in black and white. She studied psychology. She was impossible to argue with because she could never see my perspective if she didn't agree with it. Yet, every time I would distance myself from her she would keep coming back like nothing ever happened. She's very pretty and we both share a love for outdoor sports. Once I learned about the spectrum she made sense to me. I tried to bring this her attention but she tells me not to diagnose her and that I'm the problem. I'm far from perfect, but I know she's on the spectrum. It was a painful relationship for me.

[@neurodiverseconnection]

Here’s a hug. It’s a lot to work through and process. Thanks for sharing.

[@lindaclairesartori]

I thought your name was Mat the whoffer. The what? You sound insightful. So you are no longer friends with this woman?

[@victoryamartin9773]

Might be Narcissistic.

[@SarahDale111]

​@@victoryamartin9773I had that thought, too.

[@teejay8258]

I have one son on the spectrum and one with ADHD. Since they were diagnosed, and as they get older, I see many similarities between me and them. However, I don’t care to be diagnosed. A diagnosis wouldn’t change my life!

[@PhilipWatson]

Another issue you didn't mention is cost. If it were free, a lot more adults might be willing. But for 1-2K for a diagnosis for people with lousy insurance and getting by paycheck to paycheck, no way! That's a privilege many can't afford.

[@neurodiverseconnection]

Yep. And often it’s not necessary if people are able to accept they have it without being diagnosed. I have had several officially undiagnosed autistic clients who acknowledge they have autism. And although I’m not technically qualified to diagnose, I confirm that, sure, yes, they do. The money spent can be a waste even for those who can afford it.

[@chapachuu]

It double that in Canada. Way too expensive for most people.

[@bobbiejudd5905]

Fortunately (I guess), because it’s been disabling for me I am unable to work, so I don’t have a job, which apparently lets me have decent enough insurance that covered the cost of the appointments and diagnosis. Took MONTHS though. Now I need to find a doctor willing to diagnosis my fibromyalgia. Oh boy….

[@PhilipWatson]

Thank you so much for recognizing that. It's very validating when people recognize this, yay! @@neurodiverseconnection

[@SarahDale111]

​@@bobbiejudd5905Have you looked into healing fibromyalgia with a carnivore diet? The stories are out there. I've been eating only meat for 6 years...since before I discovered that I'm autistic. Pain wasn't my issue...I was hoping for mood stability, and I got it! I sleep better, I tolerate sensory stuff better, I don't have meltdowns/shutdowns like I used to, and the list goes on.

[@firesong83]

I am 74 and din't find out until about a yearo ago that I am on the spectrum. That definitely was a game changer for me.

[@neurodiverseconnection]

I’m glad you found out. Hopefully we can make this all easier for the next generations.

[@daverei1211]

I’m 57 and never been diagnosed but have felt like an alien anthropologist studying the humans all my life. Fortunately in my work my different way of thinking is a superpower.

[@neurodiverseconnection]

Thanks for using your different way of thinking… these differences are pushing our world forward.

[@brettself]

I’ve had 68 jobs throughout my life. Work is boring and a waste of time but I have to have money. All of my adult relationships have been “all-in” and I don’t need friends I think. I don’t want to see ASD as a reason for my struggles with normal, but it might be.

[@neurodiverseconnection]

Neurotypical brains and bodies are sensing things that autistic brains aren’t. The information those senses gives does help make interactions easier for us in some ways. And in some ways having all that information makes things harder, too. If you have ASD, your challenges would be different than the challenges neurotypicals face. So, ASD could be part of those struggles.

[@BillysFingers]

As an adult with ASD, i feel like it's like a black hole, no one can see a black hole but we know it's there due to the activity going on around it. I don't feel i have ASD when i'm on my own, but it's when i'm around others in social situations i can tell i'm different by the reactions i create that neurotypicals don't. Some times i can mask these differences and for a while blend it, but it's hugely exhausting and then i make a mistake and others are like, oh i can't believe you said or did that, you're an adult you should know better. I have learned that being on my own is best for everyone.

[@neurodiverseconnection]

I am sure it is so so hard. I really hear you. I wish I had solutions. I am preparing some materials for autistics to explain in autistic language what is happening for neurotypicals so that you have the information to make the best decisions for yourself. And we need better materials for meurotypicals too. They (we) don’t comprehend the source of the difficulties or how they ought to be responding to level 1 autistic adults to make friendships good for all of us. I hope that we can all find better solutions than the solutions that are out there right now.

[@BillysFingers]

@@neurodiverseconnection Thanks for understanding. I think half the battle is just being understood. I'm glad i found your channel, i look forward to more of your content. Keep up the great work!

[@spaghettiking7312]

I have believed I've been autistic since I was a teenager, but I haven't been diagnosed largely because I only lived with my mother, who didn't have the time to help me get a diagnosis. Now I'm an adult, and no doctor wants to deal with me, even though myself, my family, friends and pretty much everyone who knows me believes I'm autistic.

[@CassandraElkin]

57, still no diagnosis, have spent many years wondering and a lifetime figuring out so many things that "everyone knows" but I knew that I did not get the memo on so many things others consider normal or natural. Once I started looking into it, it made a lot of things make a lot more sense. I took several online tests last year, and every one of them indicated that I almost certainly have Asperger's. I finally have a label for my "weirdness" - which I love just the same as before, but can now explain.

[@Yarcofin]

I'm 90% sure I'm autistic but I can't justify paying 3,000 - 5,000 for an official diagnosis.

[@tudormiller887]

I was diagnosed with ADHD Combined a few years ago, but I have most of the symptoms of Autism. I'm a 50 year old man living in 🇬🇧

[@markwood1159]

I'm now in my 50's and have suspected I'm autistic for quite a while. My problem has been the opposite of what you discuss here--when I mentioned to therapists I've worked with that I thought I might be autistic, they've told me I'm not. Because of this, I've mostly ignored my suspicion until recently. I've been learning more about it lately and now, I'm almost certain my therapists were wrong.

[@neurodiverseconnection]

I’m sorry that has happened to you. You’re not alone.

[@markwood1159]

@@neurodiverseconnection Thank you

[@andrewlutes2048]

The problem with getting diagnosed later in life is it’s used as justification to discriminate against you; refuse to hire you, blame your autism to end friendships and other relationships, refuse to help you with job training or guidance or mental health assistance. It’s not a good deal.

[@neurodiverseconnection]

Im sorry this has happened to you.

[@desertdarlene]

Yes, that can sometimes happen. However, sometimes being diagnosed can help you. In some parts of the country, you gain protection in your job. They can't fire you right off for something related to your disability, for example. They also have to make reasonable accommodations like modifying the amount you spend working with the public or giving you leeway to take breaks to reset yourself.

[@jamessmith4287]

They’re allowed to look at your medical records like that? I thought that’s illegal

[@RobManser77]

My parents actually paid for a child psychologist to visit our house when I was a child. The presentation was that I had no friends; I spent hours playing on my own, often obsessing over tiny things; I was super-sensitive to touch and feel to the point where I refused to wear most clothes; super-sensitive to taste so I was a picky eater; I was extremely particular about the way things were laid out, and loads of other symptoms of what I now know are classic autism. This professional psychologist never once mentioned the A word. My wife, who is a doctor, has confirmed that back then, in the 1980s and early 90s, autism just wasn't really diagnosed. I spent my whole life confused and upset that I was strange, different, had so many things "wrong" with me, and couldn't relate to the way other people communicate. The notion that it's just one thing has been a great relief.

[@neurodiverseconnection]

I’m glad answers are finally coming and am sorry that you’ve had to wait so long.

[@zuko5404]

I hate panic attack let alone taking my own life

[@aubreyleonae4108]

I'm 66 and learned recently.

[@knotwool]

A diagnosis could be a relief for many. I’ve felt “different” all my life and have so many autistic traits that are affecting my work life in my 50s as I get more easily fatigued and can’t mask as well as I used to. I’ve been high functioning as a nurse for 30 years, but the social faking I do is wearing me down. I’m to see a psychiatrist in the near future and will welcome a diagnosis of autism, not as a label, but as an explanation for all the difficulties I’ve had in life.

[@dmora2386]

So, I'm almost 40 now, and due to studying a lot of material on leadership and just business in general I accidentally stumbled upon this topic. I have diagnosed adhd since I was 21 and I always thought certain things I do/did was just the adhd. Knowing this, I just compensated by recognizing people react poorly to some of my reactions or words. In doing so became very emotionally intelligent and can actually read people and see things "normal people" cannot. On the other hand because I was suppressing my natural habit and "putting on a mask" to blend in and not offend anyone, I thought... Huh, I'm just wierd and this is the way life is for me(normal) . Well it freaking turns out that crap was Not normal and I freaking autistic man what the hell. I always wondered why I seem tk be not normal. After social events I'm ultra wiped out and will go weeks without the slightest desire to be in a social situation because masking is so exhausting. Then I think about my reaction to certain noises where I become inappropriately angry while everyone else just get slightly annoyed but I'm over here about to throw a desk across a room. This of course is quickly suppressed by my coping mechanisms which is shoving noise canceling earbuds into my ears all the time. Then I think of why I'm ultra sensitive to certain smells, or why if someone breaks someone in my house even something small I become furious and have the feeling of "no one's allowed over here anymore". The list goes on and on and on. The whole time I thought it was my adhd, turns out I have both. Every single online test I take scores me high, to well in the range when answering honestly. Many of the questions that are asked, are senarious I, as an adult have already learned now to compensate for and work around. That compensation has its limited however, it is extremely taxing on the mind and can only last around and hour or so if completely sober. Now if you add alcohol in there, we'll that's tuff shuts it all off and basically I'll say what I want when I want and won't give a crap who I offend. Anyway... 40, took me till 40 to figure out what was wrong. Thankfullt I'm made it and am very successful monetary, but I do have to work one rebuilding relationships.

[@dmora2386]

I'm going in for diagnostics, just to know for sure. It's for peace of mind. I'm high functioning, but I'm still weak in areas I'd like to improve, particularly because I future business dealings.

[@neurodiverseconnection]

I’m glad you’re finally getting some answers.

[@hopelessnerd6677]

I'm 67, and I remember sitting in class, watching everybody doing "something" that the teacher had just told them to do, and wondering, "how do they get it and I don't?" It was only a few years ago that I had enough information available to explain why I was different. By then I had already written most of my coping software. I have a niece that is hardly functional and back in the 60's, they never said she Asperger's. It was only decades later, when my mom's hospice nurse took one look at her and said "does she have Aspergers?" that anybody realized it.

[@donnaml8776]

People make it so easy, but it is not easy to get help for Adult Autism. Have looked into getting a diagnosis for some time now, and if you aren’t loaded and able to travel near and far you cannot find help.

[@Hermitthecog]

Re: <a href="#" class="seekto" data-time="100">1:40</a>, yes, a diagnosis does help to get certain supports, but systemically we remain chronically undersupported, and many of the cracks we fall through continue to exist despite "awareness" campaigns.

[@neurodiverseconnection]

Yes, it is a huge problem. Identification is only the beginning. I am working to create programming to try to fill this gap. It desperately needs to be filled.

[@taras3702]

The more I learn about autism and how subtle it can be, the more I suspect I am in the Spectrum because of a lifetime of mostly negative experiences due to being different from everyone else.

[@neurodiverseconnection]

There are some pretty big differences between ASD brains and neurotypical brains even if they’re differences are pretty difficult to distinguish for most of the population. You should be able to get a definitive answer from the right qualified psychologist. What’s most important is speaking as honestly as possible.

[@EllasGramma]

I am in my 70’s and my relationship with my husband is finally making sense when I understood he is probably on the spectrum. Unfortunately, he’s never been diagnosed so he would totally not understand my need for respite. I really don’t know what to do .. but I definitely need some breaks here and there …

[@neurodiverseconnection]

Hug. You are an expert in this after a lifetime. Diagnosis is only a step in defining the problem, which you may have already defined. It doesn’t necessarily bring solutions or understanding. I am sorry this is so hard. Hugs again.

[@susanhopemason]

I am 69, and just recently realized that I might be autistic. I didn't know if there was anyone in this area who can do an evaluation/assessment. My insurance company does this annual health assessment where they come to your residence and ask a bunch of health related questions and take vitals, etc. My appointment for this year was this afternoon, and I asked him about getting as assessment. He told me that the first step is seeing a neurologist, and after that he said I would probably be able to see a neurological psychologist/therapist.

[@ilovegreen0150]

All my kids including twins diagnosed and in special classes at school. I think hubby is but he refuses to be diagnosed. His 53.

[@katrinawoody6268]

I am a 51-year-old woman that has felt like a weirdo all her life and I am desperately seeking a diagnosis because I believe I am a high-functioning autistic but I have no idea no idea at all how to find a doctor and even if I do find a doctor how do I even ask for an autism test? I am afraid that doctors think if you asked for certain tests or certain diagnosis the doctor will think you're trying to self-diagnose and immediately tell you you're wrong. I also suffer from severe anxiety

[@user-wd6wj7vn5d]

I know I have ADD & cPTSD, now wondering about spectrum. Disabilities run in the family. I’m gonna ask my GP. I don’t know where to start.

[@NoTfRoMThIsPlAnEt13]

Getting diagnosed with ASD is probably the only thing I regret doing and I've done a lot of not ok things.. I've never felt more alone in my life as I do now

[@neurodiverseconnection]

That’s so sad to hear. I am working tirelessly to create videos to help you and the professionals understand what this all means so that you can get answers. I know it’s just my way of contributing. But I do it because I witness the pain daily. Hang in there. Here’s a hug. You’re not alone because there are lots of autistics around you experiencing the same things and because there are some of us out here trying to do more than use buzz words like “inclusion.”

[@NoTfRoMThIsPlAnEt13]

@@neurodiverseconnection Awe 🥺 thank you 🖤

[@neurodiverseconnection]

@@NoTfRoMThIsPlAnEt13 Hug again

[@mikiethespike]

I’m 41 and was diagnosed around ten yrs ago. I didn’t believe it for a long time and still find it hard to accept. I’ve always been different in some ways but I just thought different strokes for different folks, I liked learning. Especially music while my friends would be playing football wich I hated. But I don’t know. I’m just me

[@ornag5046]

At 54 I realized that I’m AuDHD. This is after a lifetime of trying to figure out why so much of life was hard for me; after thirty years as an educator who “nearly” fit adhd/autism signs but, since I’m not an eight year old white boy, was simply judged as lazy (despite the fact that I clearly wasn’t); after working with a neuro affirming therapist for years. I am unwilling to wait for years and spend thousands on a diagnosis that won’t even give me access to a single accommodation. I’m still autistic.

[@tanyajackson372]

I'm Sure now I'm on the spectrum as a high functioning adult...it costs about $1500 for test here in Australia.. I'm 41..

[@neurodiverseconnection]

It’s good that more and more people are getting answers

[@RoninCatholic]

My youngest brother is diagnosed with autism, he got it as an adult. By all accounts, I have even stronger symptoms, but I was already off my parents' insurance by the time this happened so I never got diagnosed, and now am too busy with my day job and bizarre hobbies to get it done. Listening to descriptions of symptoms, my dad suspects he might also have mild autism, but the way kids were socialized in the 50s lead to him "masking" much better than I do, and I more or less pass for normal aside from bursting spontaneously into song and dance (or my online behavior, which looks quite autistic indeed).

[@neurodiverseconnection]

I love the way you describe this. And I love that you burst into song and dance and enjoy your hobbies!

[@demZetri]

I was diagnosed eith ADHD at 18 and diagnosed with ASD at 25. Appparently, the two conditions can hide each other? I was in special education until 3rd grade and specifically and vividly remember starting to profusely struggle in school in 4th grade. It a great idea to take a child out of Special Ed when ghey have "caught up" to the other kids because there is nothing else wrong. It was not a good time. Maybe I would've been better off if I was diagnosed properly.

[@neurodiverseconnection]

Yes, you and many other people. I regularly run into autistic adults who have had a plethora of other diagnoses over the years. It’s very frustrating and sad. I’m so sorry this happened to you.

[@mysticmardi]

There was one expert who suggested ADD at 36 which I vehemently rejected. Admission to being in special class until 9th grade. Adult name calling “stupid, you are regarded” astonishing ignorance right? But I’d not accepted my uniqueness either. I finally cried UNCLE and laughed at myself and goofy ways I do shit… my only question now is I ask myself; what good is it? If my answer is satisfactory to me I’m good. 😊

[@davinadavina1331]

asbergers was removed in 2013 when asd was changed to a spectrum

[@denisebranquinho2377]

I know a lot, but A LOT of people with all types of dementia, in vary diferent level and they never have been diagnosed or even known they have mental illmess.

[@neurodiverseconnection]

One possibility is that some of them have ASD that is contributing to the dementia.

[@scottmoot2969]

"How old were you when you found out you had ADD?". 58 yr old me "They spelled it with an "O" back then. Not a diagnosis, no follow up, I'm mentally disabled from work. I scored higher than Dr on their test, I think it pissed her off. I'm using coping skills from TT and it helps.

[@leilap2495]

Nobody working with my son asks me if I am autistic. I had to go through the entire diagnostic process independently. I feel strange going to organizations my son gets care from to announce my diagnosis, but I agree it would be helpful information. The hardest part for me, why I tend to withhold unless explicitly asked, is I question if they would readily accept my diagnosis as valid.

[@neurodiverseconnection]

This is a huge problem. Thank you for commenting. I am working hard to get programs out to providers to change this situation.

[@PaidforinFull]

ya for sure, just found out recently about the possibility from my college daughter, and I’m turning 58 next month. In summary, this makes me at this time now, an INFP-T, with possibly ADHD and Autism. Guess there might be a lot of Acronyms on my grave stone, maybe I can collect a few more before then………lol

[@neurodiverseconnection]

Haha….. yeah, we sure seem to be adding lots of acronyms to people in 2022. And…. hopefully figuring things out will help people find important solutions in their lives.

[@AndreaCrisp]

Ha! I have the same acronyms.

[@PaidforinFull]

lol, yeah, I have old saying, call me whatever you like, just don’t call me late for Dinner!!

[@lrwiersum]

I corrected my friend’s grammar when I was 5. Definitely the “Little Professor.” It could have been caught. Gifted, dyslexic, hyperlexic. Oh well, I’m 65 and happy.

[@miravlix]

That is because most of us doesn't have ASD or ADHD, we have AuDHD and that is this odd mixed version of ADHD + ASD, it's not like living a life with just ADHD or just ASD, it's a THIRD SEPARATE condition. Stuff like this has aged rather badly, because AuDHD is overshadowing, having AuDHD gives you an easier road to being LOUD and PROUD and most of us has AuDHD. It's a lot harder for someone primarily ASD or ADHD for different reasons to run a youtube channel.

[@Victor-it6bv]

I have two kids with asd and i was alway suspected growing up that there something up with me. I am still undiagnosed and don't care to do so. I've already made it and learned to mask.

[@neurodiverseconnection]

Getting an actual diagnosis isn’t as important as understanding what’s going on. Sometimes it’s just an extra expense.

[@Victor-it6bv]

@@neurodiverseconnection 100% agrre

[@victoryamartin9773]

What resources are available requiring a diagnosis?

[@neurodiverseconnection]

For level 1 autism in adults? None that I know of.

[@northyland1157]

The teachers knew something was off socially in the 1980's and late 70's. By 4th grade they had forgotten all about it. The stuff they were doing wasn't helping any ways.. Like Special Physical ed training. The problem was I was overstimulated playing soccer with 30 kids, so I chose not to play. Not that I couldn't kick a ball.

[@neurodiverseconnection]

I’m sorry all of this has happened and that there still aren’t the right supports for level 1 autistics and their families.

[@desertdarlene]

I had a similar situation except for the soccer. I was put in special ed and even put on Ritalin, though I am not ADD or ADHD. I was labeled as hyperactive. I had a serious side effect from the meds, so they stopped giving it to me.

[@IaconDawnshire]

Me who doesn't have Aspergers. I have PDD-NOS

[@neurodiverseconnection]

Wellz…….. ultimately what it all comes down to is your life and your needs. The DSM is what it is (and isn’t).

[@TentoesMe]

I thought he was crazy. Then I found out he works with aspies. "Maybe he does know what he's talkingvabout."

[@aumtheaum3827]

I’m 63 and just finding out that I may have it.

[@neurodiverseconnection]

Wow. That’s a lot. You’ve lived a lot of years not knowing. I hope you’re able to find some solid answers now that you know what might be up.

[@gregzeng]

This video assumes that the undiagnosed ASD adults will seek or need treatment. Most of us are affected by these ASD people, because they live with us, near us and are in rooms with us. Work, Play, Study, Recreation, Relaxation, Entertainment, etc. The ASD people are nuisances to themselves, and to us. There will be many sorts of disharmony onto everyone, everywhere. If the ASD was better understood by everyone, then there would be no need to do the social and individual damage that is currently happening. One solution might be creating an essential social health program, similar to personal body health programs we have now. Increasing understanding and tolerance to normal behaviors. The final program, done along with health and fitness programs everywhere, requires design. It might include: engagement processes of fear, mistrust, commitment, and withdrawal from commitment. Very aged social worker now, based in Australia. Others will need to plan and try these personal growth programs. What do you think?

[@neurodiverseconnection]

I am working on building programs. What else would you suggest? Say more! This is incredibly needed.

[@TokyoShemp]

I despise all the arm flapping going on everywhere by tools.

[@SteviesEarthBasedKitchen]

I am worried that ASD diagnoses will be used as away to marginalize people who think differently and may perhaps be used as a way to enforce conformity. I don’t think that I think in a wrong way, in fact, I think it’s the right way lol! But a diagnosis could end up being a gaslighting tool. For instance, what if I say to someone “Why do people pretend to value honesty, while lying to some degree most of the time?” The person I might be talking to might tell me “Oh, that’s just your ASD thinking.” Or, they might just shake my comment off as being socially and cute … because ASD. We all know that there is a contingent of society, a very conformist contingent, that is scared to death of autism, possibly because we think differently. Am I making sense?

[@neurodiverseconnection]

You’re making a lot of sense. I can tell you’re a very observant person because you’re able to articulate exactly what neurotypicals often tend to think and say. I’m trying to figure out how how translate between the two different brain types. It’s difficult.

[@neurodiverseconnection]

Response 2: Let me try. Neurotypical brains have a sense that I call body empathy that allows them to share instantaneous emotional and social messaging with each other that becomes the backbone of a lot of the conversations they have with each other. Because they have this sense, they are not using verbal words to explain everything they’re communicating aloud. Much of what they are communicating is being communicated through their body empathy. The sense of body empathy is quite sophisticated. But, since their brains have been doing it since they were small babies, neurotypicals don’t understand it or how it works themselves, any more than any of us might understand how smelling works, for example. We just smell something yummy and then want to eat it. We don’t think about it. Neurotypicals don’t think about their sense of body empathy either. They just use it to communicate and make social decisions. It’s that sense that is behind neurotypicals saying unkind things like, “That’s just your ASD talking.” They have no good excuse for minimizing anyone, and I’m not minimizing that they have no good excuse. I am sorry they say things like that. And it is also true that neurotypicals aren’t simply being dishonest a lot of the time. In addition to the words they say aloud, they’re also instantaneously communication with the sense of body empathy that they share and that body empathy social communication is bridging the gap between the words you hear them say and what they fully mean. It puts autistics at a disadvantage in that it makes it appear that neurotypicals are being dishonest when the only component of the communications the autistic brain is registering is the verbal component. They’re not being as dishonest as it appears to autistic people that they’re being. It’s just that much of their communication is non-verbal. It is the non-verbal part that the autistic person isn’t catching and that explains why they’re not as dishonest as they sound.

[@neurodiverseconnection]

Response 3: There is a large contingent of neurotypical society that is afraid of autism. Sometimes they are afraid because autistic people think differently. From an autistic perspective, I can see that that may be the most reasonable explanation for their fear. There is more to it than that, though. They don’t understand that autistic people don’t have the sense of body empathy that they have because they hardly understand that they have it. The fact that autistic people don’t have it causes autistic people to do and say things that confuse them and that trigger a fear reaction due to their sense of body empathy. It is this fear reaction that’s guiding them. It is not something conscious, it’s something their brains are doing below the level of consciousness that they’re not trying to do any more than they are trying to smell bread when they walk by a bakery or are trying to desire eating they yummy smell of bread. It just happens because it’s part of the way their senses work. All do this makes for an incredible about of neurodiverse miscommunication and lack of understanding of each other that is different than typical discrimination over things like gender, sexuality, skin color, etc.

[@neurodiverseconnection]

Response 4: Another issue is that autistics’ lack of body empathy and the difficulties they have with theory of mind and mind blindness really can elicit behaviors from autistics that can sincerely be frightening at times. I am not saying neurotyojcals can’t also be frightening. They definitely can. And sometimes the worst of neurotypical will use their theory of mind skills and their body empathy to gather groups of neurotypicals together to bully autistics and other neurotypicals. Some of the worst of neurotypicals also use these skills to become com artists and fraudsters. Awful awful people. But not all neurotypical are using their sense of body empathy and their theory of mind skills that way. Some are using them to become the kindest of teachers and social workers and therapists, etc. So……. it’s not simple.

[@johnhricko8212]

It's great that "adults" are learning and accepting this reality, but what if those adults that are _NOT_ excepting of this, what they may refer to as "theory", are the weakest link in the chain, namely, the medical industrial complex, and it's academic proponents... Our societies tend to cling obsessively to the "work ethic" , hence, "these patients are just lazy and undisciplined....". And besides, there's no drugs that they can prescribe!… At least the sales rep for Pharma hasn't mentioned any to me... ;-)

[@neurodiverseconnection]

Yep…. there’s a complete lack of services. Big pharma might make more money off of denying level 1 autism in adults so they can continue to make money off of drugs prescribed for all the other diagnoses autistic adults get.

[@shiamaxwell3482]

Yes you can ! Therapist don’t live with them from day to day .. the spouse can easily diagnose it’s really not rocket science!

[@neurodiverseconnection]

Yes.... so true.... And, as a professional, it's important for me to stay in my lane. I am not qualified professionally to diagnose. As a spouse, I believe I am qualified and I agree with you. My ex-husband was never diagnosed and does not believe he has ASD. Yet here I am, having done research on ASD and marriage and able to articulate what's going on because I lived it. He has ASD no matter what he says; it's not something he can choose or not choose. Because I was his wife for 21 years, I have a right to speak that truth. I lived with him and his ASD and I have a right to call it by its name even if he won't accept it. Yet, as a professional, it is important for me to stay in my lane. So, he is the only one I am -qualified- to say that about..... I would have to further my education to receive the professional qualifications to diagnose. I hope that all makes sense!

[@comfortablynumb9342]

​@@neurodiverseconnection your story reminds me of mine, but in my case I believe I'm autistic and my ex is a narcissist. She refuses to accept either. It was a.. difficult relationship. And it's still tough because we have a son.

[@SmallSpoonBrigade]

@@comfortablynumb9342 I feel your pain there. My soon to be ex is a narcissist and even though I've continually told here what my needs are, she won't let me have any of them. Fortunately, I have enough self-esteem that I don't believe the idea that I'm not entitled to any sort of happiness or influence over my marriage. I'm just glad that I get to take advantage of male privilege for probalby the first time in my life and leave her and still have some reasonable hope of happiness and having my own familiy elsewhere. The whole thing is pretty unfortunate as she could have given me what I needed, I don't really need much, but being allowed to make my own decisions about when or if to eat, sort through and organize myself on my own and have my living space set up for my benefit rather than for the benefit of random people that might stop by isn't a big ask. I'm not really sure if my future partner will be ND or NT, but in either case being tolerant of my needs is nonnegotiable.

[@dannyarcher6370]

@@neurodiverseconnection _Because I was his wife for 21 years, I have a right to speak that truth. I lived with him and his ASD and I have a right to call it by its name even if he won't accept it._ The defamation laws around labelling people with mental disorders only makes awareness that much harder to promulgate. In the last ten years, I have had my life turned upside down by a co-worker with BPD, a psychopath manager, two sociopath managers, and now I've just figured out that my ex-best friend and ex-business partner has Asperger's. But, oh no! Woe be unto you if you ever utter the words, "So-and-so is a psychopath" or "My ex-business partner is autistic." To my mind, these terms should have no more defamatory value than calling someone an arsehole or a dickhead but the threat of legal action only aids in the continued victimisation of neurotypicals.

[@chriscohlmeyer4735]

@@neurodiverseconnectionabout four months ago while we were waiting for our grandson to be assessed for ASD, my wife of 45 years asked "do you mind my saying something about you?" me: no, go ahead, "I think you are autistic" me: yes, I have thought so for the past few years. Actually, I had gone to the public health nurse a year ago with my daughter-in-law and grandson to get his shots and to start the process of figuring out if his delays were just Covid restrictions related or compounded by autism. Part of the questioning regarding autism was if anybody in the family has been diagnosed or is suspected of being autistic - myself and I now suspect his father are autistic due to the evolution of the definition of and understanding of autism (his father and I share dyslexia along with two of my three brothers). Eleven years ago I began the process of dealing with a childhood trauma issue that I had never disclosed, during therapy more and more issues and odd things kept coming up about my childhood. During this period my mother passed and one of my brothers related a rare detailed conversation he had with her first about when was the last time she had heard from me (over a year) - I was the independent son then onto how she expected me to be a daughter and her subsequent inability to carry a pregnancy to term. Other brothers and their wives couldn't believe a mother could act as she did toward me so when it came time for each of us to say a few words at her funeral they accepted "I have nothing to say". A subsequent conversation with the brother that I had the closest bond with confirmed that I had bonded with him instead of mother (he often held my bottle and read me stories in my early life). I understand Gabor Mate's premise that autism is caused by early childhood stress... I don't fully agree in all cases with his premise but see it as a genetic switch that could be turned on if not already turned on by the early childhood stress.

[@michaelvandenheuvel317]

Cognitive dissidence compounded.

[@neurodiverseconnection]

In what way?

[@Matt463634]

Azzburgers

[@foljs5858]

There's no "asBergers". It's asPergers

[@neurodiverseconnection]

You're right! And technically, there's no Asperger's either! Autism is super super heterogenous. Hopefully before too long science will be able to better differentiate between all these different brains -- as long as we're creating categories, they ought to at least be more descriptive, IMO.

[@SmallSpoonBrigade]

@@neurodiverseconnection Which was dumb. They should have just gone back to the older term of schizoid of childhood for the children identified and schizoid personality for the adults when there wasn't enough evidence to support it being early enough to be autism. Or better yet, just change the name to schizoid autism and then just differentiate base on at what point the disorder became obvious. Because that was always the case, schizoid personality disorder is always a misdiagnosis. There's limited evidence that it's possible to be a pure schizoid, it's always a misdiagnosis for autism, schizotypal personality disorder or avoidant personality disorder. It mostly appears impacted by upbringing because that makes it harder to mask and less likely that the adopted masks will be socially appropriate.

[@neurodiverseconnection]

Do you have any good links that talk more about this? I'm very interested.@@SmallSpoonBrigade

[@PacificNWGrl]

AzzBurgurs

[@Jay-kk3dv]

So basically if you’re just a little different or have social anxiety you have autism. I find this hard to believe. People with functioning autism usually have no self-awareness, and are not bothered by the way they are, they aren’t seeking out youtube videos about their autism. If it is actually “something” it’s not autism.

[@FuzzyFoot58]

Well, that's just wrong. Everyone is different and the level of selfawareness has nothing to do with a potential diagnosis or lack of one. The same goes for level of intelligence in people with autism and Aspergers, many with Aspergers have a high IQ and are fully aware of their diagnosis.

[@HellHathNoFury.]

I think the excessive amount of people self diagnosing themselves, is actually dangerous, Especially with the advent of tiktok causing of an alarming glorification & popularity of mental illness. If you want an actual diagnosis you need to be properly evaluated

[@neurodiverseconnection]

It’ll be interesting to see how this plays out. Only about five years ago, many level 1 adult autistics who appear typical were denying that they might be autistic. Many were even working to mask so well during diagnosis that they wouldn’t get the diagnosis even through they were autistic. From my perspective, the popularity of the neurodiversity movement is helping reverse that tendency and is a good thing. Another issue is that diagnosis is expensive and out of reach for anyone except wealthy and/or well-insured individuals who live in developed countries. Many people will never have access to the opportunity to get the diagnosis they need and are completely reliant on information in the internet. It’s very unfortunate, for sure. But the world hasn’t managed to figure out how to equally distribute resources yet and it seems unlikely that the rich and powerful will consent to changing things in the near future. So here we are, with the internet being the best equalizer we have access to.

[@ralphdavidson9542]

No, no, no! If, as YOU SAID, they have grown to cope with it LEAVE THEM ALONE! Why give them victim status when they are fine? Plus, the "support" you mention costs a lot of money and in the UK at least, it is paid for by tax payers. Please leave these people alone!!!

[@neurodiverseconnection]

Are you level 1 autistic or in a family that has level 1 autism?

[@mikaelangeloh2316]

We haven’t learned to cope, and we’re not fine. We’ve never been fine. Everything is a struggle. Life is hell. But we put on masks and fool most people, even though it takes all our energy to do so, so there’s none left for actually living. This is my experience at least. Getting diagnosed with autism and ADHD now, at 41, and I am utterly, completely burned out from trying to survive on my own with no help whatsoever in my childhood or later.

[@michaelgarrow3239]

Bad mothering is causing an increase in autism…

[@Jay-kk3dv]

Yes

[@vincitveritas9556]

If it turns out I'm autistic does it mean you have less rights?? Because I don't have all of those as it is, so why would being diagnosed help me... The government owes me billions for my inventions. I described several of them on a recording which was sent to the American embassy in Dublin Ireland... Subsequently everything was made. I stupidly asked to be left alone, and asked for a conservatorship and I asked for that to end about now.. but I'm still homeless.. I have no rights.. harassed daily, they'd rather I kill myself than pay me, George O'Shea, what I am rightfully and lawfully owed... FTW