Invisible Diversity: A Story Of Undiagnosed Autism | Carrie Beckwith-Fellows | TEDxVilnius

Invisible Diversity: A Story Of Undiagnosed Autism | Carrie Beckwith-Fellows | TEDxVilnius


Translator: Tanya Cushman
Reviewer: Rhonda Jacobs Everyone in this room has a unique voice – something about you
that is different from others. And I want you to take a moment
to think about what that difference is. Some of you can teach; some of you can create
amazing pieces of art; some of you can solve
mathematical problems with ease, while others can care for
and nurture others unconditionally. Now, I want you to imagine
what it would be like if for your entire life, you had no idea that difference existed. There is a group of people
whose unique voice, whose very diversity, is so well hidden that it’s invisible,
even to themselves. I was one of those people. I am autistic, and I had no idea until
I was diagnosed at the age of 35. Autism is a condition that affects
how a person communicates, how they relate to people, and how they experience
the world around them. Autistic people see,
hear, and feel the world differently [than] non-autistic people. And while no two
autistic people are the same, we do share common traits, such as how we communicate, how we are able
to plan and carry out tasks. The level of difficulty
a person has with these traits will shape where they fit on the spectrum. Now, a lot of people think
the autistic spectrum is a straight line with severe autism at one end
and mild autism at the other, but it’s not like that at all. Autism is like a kaleidoscope of colors, like that color wheel on your computer where all the colors
blend into one another. So let’s have a look
at these autistic traits. We have sensory issues. That’s how you see, hear, and feel. So an autistic person
may have amazing hearing, and they may be able to pick out
minute details other people can’t see. Autistic people are fantastic
at finding “Where’s Wally,” but they may struggle
to process audible sounds. We have social communication. That’s how we communicate and how we understand
how other people communicate. It involves things like understanding
body language, sarcasm, and humor. Autistic people can take
things very literally. So a saying such as
“He wears his heart on his sleeve” may be very difficult
for an autistic person to understand because how can the human heart
exist outside of the body, never mind on the sleeve of a shirt? We have executive function. Now, that’s our ability to plan,
to organize our time and space, and to carry out tasks. So an autistic person
with poor executive function may struggle to complete tasks, they may struggle to organize
their space around them, and they may have difficulty
with poor time-keeping. We have repetitive behaviors. Now, this involves things like the level
of interest we have in something. So the cliche is the autistic
person who loves trains. One of my special interests
is the TV show “Friends.” I’ve listened to it
every single night for 15 years, and I know every episode inside out. I can name every episode, and I can tell you who said what line
and what episode it came from. And finally, we have stimming, and that’s using self-soothing behaviors to calm ourselves, to communicate,
and to process information. In autism, we also have
these labels, which I hate, and they are “high-functioning”
and “low-functioning,” and the reason I don’t like them is because they’re misunderstood
and they’re misused a lot. People assume that high-functioning
means that your autism is mild, when, in fact, high-functioning
simply means that your IQ is above 70. It’s also often used to describe
an autistic person who can speak. Low-functioning being the opposite,
with an IQ below 70, and is often used to describe an autistic
person who can’t communicate with speech. But the truth is
somebody can have a low IQ, and they may not communicate by speech, but they may or may not be
massively affected by their autism. Equally, I am high-functioning,
but my autism is not mild. So what is autism like to live with? For me, autism is all about anxiety. It’s about intense emotions, and it’s about living with a brain that does everything it can
to control my world around me. People assume that autistic people
don’t feel emotion. But the truth is, for many of us,
we feel it intensely – I’m talking 200, 300,
even 400% stronger than other people – and to make matters worse,
I can’t identify emotion. So I can feel it intensely,
but I can’t name it. I don’t have the language
to describe emotion, so I may say “my stomach feels squiggly,” and I could be describing anxiety; or I could say that my head
feels tired and slow and heavy, and I could be describing
sadness or depression, but I wouldn’t know. Living with intense emotions
and not being able to identify them means living in a world of utter chaos. So to keep myself safe,
I have strict routines: I get up at 9:00 in the morning
and I have a cup of coffee. I then settle down
to do a few hours of work, and I’ll have another cup of coffee
at 1:00 in the afternoon. I’ll watch one hour of TV,
do some more work, and at 5:00 I stop
and I settle down for the evening. But if I’ve got family coming to visit,
that routine is going to be disrupted, and so in the days
leading up to them arriving, my anxiety builds and builds and builds, and I start struggling
with intense emotions I can’t identify, and eventually my brain crashes,
much like a computer; it cannot cope. Everything stops. I can’t speak; I can’t hear;
I can’t respond. I am having a full-blown meltdown,
and there’s nothing I can do. I am on the floor; I’m rocking, I’m crying,
I’m biting myself, and I’m hitting myself, and I can’t stop it. People assume that a meltdown
is like a child having a tantrum, but the truth is for an autistic person a meltdown is something that
you can’t control, and you can’t stop it. It is like having a seizure;
you’re semi-aware it’s happening, but there’s nothing you can do
other than ride it out. So I ride it out. And I wait. And when it finally ends,
I’m exhausted and all I can do is sleep. And while I’m sleeping,
my brain is resetting itself. That computer inside my head is rebooting, and it’s resetting my emotions,
my ability to function, and my thoughts. Autism is like living
with everything on full-blast. There’s a film called “Spinal Tap,” and in this film,
the guitarist has an amp, and his volume dial
doesn’t just go to number 10, it goes all the way up to a number 11. And there’s this joke that
“Why don’t they just make 10 louder?” And the guitarist says,
“Because 11 is louder.” Autism is like living with a dial
that goes all the way up to 11 when everybody else’s just goes to 10. So noise physically hurts me. If I’m in a coffee shop, I can’t hear
the person I’m with talking to me because I can hear the coffee grinder, I can hear the milk frother, I can hear this man over here talking, and I can this hear this lady
having a conversation on a telephone. I can hear the cars traveling outside. I can even hear the light buzzing and sometimes I can even hear
the air moving around the room. I live in constant noise,
and that dial is all the way up to 11. Similarly, a nice sunny day for you
can be blinding for me, and there are certain colors
and patterns that are excruciating. But that dial can also go down
into negative numbers. Earlier, I described executive function and how that’s our ability to plan,
to organize, and carry out tasks. My executive function is terrible. It takes me about two hours
to settle down to do some work, and then I’m up and down all day
with distractions. I suffer from intense procrastination; I need a lot of help
to guide me through certain tasks. If I’m having a day
where my anxiety is very bad and my sensory issues are really severe, I can struggle with basic tasks like getting dressed and getting washed
and making a cup of tea. There were some days
where I don’t get dressed and I don’t get washed because those tasks are overwhelming. So you can see, my autism is not mild;
it affects me significantly. And it can affect my ability
to function independently some days. So how then was it missed for 35 years? How was it that even I
did not know that I was autistic? We are taught from a young age
how to interact with people: we’re taught to chat, to be polite, to play together, to share,
and to take it in turns. But these things don’t come naturally
to an autistic child, and some of them can
actually be quite uncomfortable. I really struggle with eye contact. It feels really uncomfortable for me, and it’s only something
I feel comfortable doing with somebody I have
a very intimate relationship with. But I was taught from
a young age by my mother, “You must look at people
when they talk to you. You must look at them.” There was no way I was getting out of it,
so I learned to cheat, and I look at people here,
just above their nose. And sometimes I’ll look
at them and look away quickly, so I’m giving them
the eye contact that they need, but it’s more comfortable for me. I also really struggle to make friends because social chitchat
doesn’t come naturally to me; I don’t know what’s expected, and I don’t know
what people want me to say. But I learnt to hide my confusion
at a very young age, and I learnt to copy
the behavior of other people. We’re also taught at a young age
how to present ourselves: flapping our hands and tapping
our head are not socially acceptable, so we’re not encouraged
to do those things. But those movements can be
a lifeline to an autistic person. They’re called stimming,
and they are crucial. For me, stimming is
a crucial form of communication. When I’m happy and excited,
I flap my hands. And when I’m trying
to process information, I’ll block out sensory input – I twitch my fingers
really close to my face, and it blocks out everything else. But this and this
is not socially acceptable, and I learnt at a very young age
to hide my stimming. I learnt to keep it inside me
until I was in my room, on my own, where I could rock and I could jump
and I could flap my hands and tap my head. Stimming is a behavior that is often
forced out of autistic children because people don’t understand
how essential it is. Autistic people need to stim. We use it to communicate; we use it to process information; we use it to block out
that extra sensory input that can be too much for us; and we can even use it to help prevent
a meltdown when our anxiety is building. So with all the social coaching
and expectations on how to behave, autistic children are inadvertently
taught to hide their autism. They are taught to mask
their autistic behaviors. Little girls are brilliant
at observing other people, and so autistic girls learn
at a very young age to hide their autism
and to mask their autism. Masking is not a conscious effort; masking is the result
of being told repeatedly, “You must not behave like this.” Masking hides our true self. It hides our unique voice, and it replaces it with a more
socially acceptable version of ourselves. Masking is exhausting. I am masking now, and I am masking all of the time
when I’m with people. I can’t switch it off; it’s not a conscious thing, and it is dangerous. People are unaware they
are teaching their children to mask, and they are unaware of how much damage
it causes to our sense of identity. I learnt to mask
my autism and my true self because I was taught to by my parents
and my teachers and my friends. They had no idea what they
were asking me to do, but I did it anyway. And I didn’t realize how dangerous
that was going to be for me. As I grew up into my teens,
my early 20s, my autism fought back. It was tired of hiding,
and it was tired of being masked, and so it showed itself
in the only way it could: I developed an eating disorder, I began to self-harm, and I tried to end my life repeatedly. My autistic self
was screaming to be heard, but the louder it shouted,
the more incorrect labels I was given: bipolar disorder,
borderline personality disorder, depression, mixed anxiety disorder. So the misdiagnoses piled up because my doctors
had no idea I was autistic because I had learnt
to mask it so brilliantly. I was given psychiatric drugs
which did not work, counseling and therapy which did not work. I was even given electric-shock therapy, which did not work. I spent ten years
in the mental health system bouncing from one
inpatient stay to another, until finally I was left blind
for two whole years because of psychiatric drugs
I should not have been on. Enough was enough: I withdrew from the mental health system. I weaned myself off the medication,
and I waited to see what would happen. My doctors warned me
my mood would crash, but it didn’t, and instead, I got better. I started to explore other areas
of my life I was struggling with, and for the first time, I realized how difficult it was
for me to make friends. I began to understand that I struggled
with certain types of language, and I allowed myself to stim, and I found it helped relieve my anxiety. I referred myself
to an autistic-diagnostic team, and they confirmed
my suspicion: I was autistic. Masking autism is dangerous,
and it is killing autistic people. Autistic people have a life expectancy
of ten years less than their peers. Ten years. And the number one
cause of death is suicide. At the age of 35,
I discovered my unique voice. I discovered I was autistic. But I also discovered that society
is stifling the voices of autistic people. We need to allow our children
to be their true selves. We need to allow them to think and to be. We need to stop telling them how to think, and we need to stop worrying
about whether they’ll fit in. We need to also let
our autistic children be autistic. We need to stop forcing
out behaviors we don’t understand, and instead we need to encourage their special interests
and their unique skills. I am autistic,
and this is my unique voice. Thank you. (Applause)

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About the Author: Oren Garnes

100 Comments

  1. They are going to investigate whether I have autism. I'm a 42 year old male, single, never had a relationship and have great difficulty just living my life.

  2. As someone who has this, I can understand all these things feel. It’s exhausting. What brings tears to my eyes is knowing this conversation to many will only be remembered for a day at best. Normal people have no clue.

  3. You get a Comcast bill, they demand a contract or pay more. My autism is such that I can’t live under these contracts. I can’t have a rope tied around my finances. So, they punish me by making me pay more – far more than others who don’t care or can let it roll off. This is the hard part of high functioning autism or Aspergers.

  4. A question I find really interesting is where does genetics and the way we're hardwired end, and our own free will and responsibilities begin? Carrie sounds like an example of a person with colossal genetic pressures, and yet she soldiered on silently for 35 years without recognition. But you also come across people who seem to love to play the victim card, even though they could probably achieve more than they realise if they took more responsibility for themselves. How can you really test for this? Is it even possible to do so? How do you know if an alcoholic is just weak willed, or if they have the genetic condition 'Alcoholism'? The weights that we all carry, the invisible handicaps, how do we measure our levels of disadvantage?

    I think a rule for me is to assume the least amount of victimhood as I can manage, and to hold my standards as high as I can manage. For instance, I've always suspected that I'm autistic, but, personally, I resist defining myself as such. I'd like to hold myself to the same standards as everyone else, perhaps even higher if I can manage it. I don't want to use the autistic label as a way of excusing myself from my responsibilities in life. And thankfully this has worked out ok for me so far.

    But I guess there's a point when our handicaps may inhibit our ability to function in everyday life so much that action is required and a proper diagnosis is necessary, and in those cases I think it's good for yourself and those around you to be able to understand the ways in which you're handicapped. It may make life a little easier for all.

  5. This was the video that made me truly understand what masking was, and that it really was what I was doing. People talk about masking as acting, as lying which brings to mind all this negative images of a two faced person who is manipulating others when that is not it at all. Masking is so, so much deeper then that, masking can be subconcious, it can be something we do without even realising, it can be our protection and our downfall all in one. It can be exhausting and isolating even if we look like we are fitting in and coping, right up until we are not, and this message is so powerful, thank you. This is a video I have come back to over and over again.

  6. This is my stepdads account. But who is writing is a 27 year old woman who struggles with Asperger syndrome. I was diagnosed when I was 20, and I took a long time before I actually accepted my diagnosis. I truly saw it as a death sentence. Only recently have I truly accepted that this is me and this will be my life, to a degree. I have struggled all of my life with making friends and maintaining friendships. I a m pretty well a loner, because most times I try to make friends I come on too intense or they just want to take advantage of me and use me for money and for drives. Without giving money away or giving away drives all the time, leaves me with few potential friends it seems. Most just want me for something. I am either too quirky and have limited interests and cannot balance her interests and mine (compromise) or I come on too intense and creep them out. Usually I am desperate for a friend that yeah I will maybe accidentally scare them off or I come off as rude by accident since I am no good with eye contact or showing body language that shows I am interested ( even though I am, I am just so awkward.). Also, I deal with the struggle of coping with loud noises /sounds, certain fabrics and texture, and bright lighting. I cannot socialize for long and if theres external stimuli such the loud noises, uncomfortable fabrics, bright lighting, then my time to socialize is even more limited. I meltdown a lot and I suffer from extreme amounts of anxiety. My meltdowns are where I cry and cry and have to go to a quiet, dark room and try to calm down, away from people and any triggering stimuli. On top of that I have social phobia so I am always worried about being judged negatively or going outside alone, anxiety plagues my life. I am trying to see the positives of having Aspergers now that I am older, and I am trying to figure out how I am going to function the rest of my life. I compare myself to others my age, who are working successfully, earning decent income, have lots of friends and get to go to dances and outings, have a great family, travel, etc etc.. I try not to.. I am sad.. I know people will tell me 'stop self pitying!!' I have dreams and aspirations that i do want to achieve !! I will try.. Thanks for reading

  7. as to the eye contact and bright lights, i have found tinted eye wear and nightlights to be quite helpful

  8. Thank you so much for sharing your story and raising awareness about Autism. You are giving a voice to so many individuals out there.

  9. I'm autistic and the loud music and, ironically, the loud music and crazy colors at the beginning and end of this video spiked my heart rate. Thanks a lot. Otherwise, this was really good.

  10. I use that exact technique to "cheat" when it comes to eye contact… the only difference is that I stare at the bridge of a person's nose instead of the forehead. But apparently, it didn't work perfectly, since after my diagnosis I mentioned doing this to my dad, and he said that he'd noticed, but always gotten the feeling that it was a sign of suppressed contempt. Whelp, so much for conveying politeness. 😅

  11. Describes the me so well. Not officially diagnosed but the realisation has been setting in over the past year. I am certain that I have autism. I am 40. All of these experiences I can relate to sooo much. I have also suffered from an eating disorder and been stuck in the mh system being misunderstood. You're so brave to do this talk xx

  12. I was diagnosed at age 45. I've had a lifetime of being harshly judged and misunderstood. I feel isolated and scared all the time.

  13. I’ll never forget telling my high school boyfriend, “I have something they haven’t come up with yet.” Truth is they had come up with it, but my mother was also autistic and never knew. My son has his diagnosis, it is now my goal to receive mine & better understand myself for the success of our family. One day at a time.

  14. I’m a teenager and my parents, and school teachers are still trying to figure out if I’m autistic or not. Unless they know 100% and are hiding it from me.

    I mean it makes sense. I seriously have hardly ever been similar to someone apart from this friend I have who just has recently told me that he might have Aspergers.

    Also I heard a really bothering noise coming from my sisters room and I literally started crying and had to call my mum to make it stop

  15. Thank you! I was diagnosed with autism at 30 but only after all my children were diagnosed did i take myself off for an assesment.

    Ive learnt so much and pass it down to my children that its ok to be autistic, its ok to stim and then in our house they can be themselves.

    I want to work with other kids later on but that means entering a world that does not understand me and may never will.

    The idea of working terrifies me.

  16. I use music, I put on earbuds, and I can work fast and efficient the whole day without looking into someones eye or chat with them.

  17. I hear parallels with my life here – I just got diagnosed in the last year. I suffered the loss of a job that was my whole identity and the subsequent feeling that I'd lost control of my life caused near-constant panic attacks. Luckily, with the help of a psychologist we figured out the link within my first 5 sessions seeing her, and I was then able to go straight to a psychiatrist for diagnosis. The whole process was around 2 months. After researching the condition it feels so good to understand myself better. It's interesting to look back at moments you remember in your past with a different perspective of why you behaved the way you did. I'm so much happier now 😊

  18. I watch you're video talking out about you and I cry alone in my appartement because now I see psychiatric doctor and I think I am autism since I am young. I am not able to kept eye contact during conversation, same thing when I am happy I make some stupide move, and the rest. Ouch !!! It make sens to me, but I am not diagnosed too. thank you !!! love you

  19. It's ironic you lost your sight from all the meds! And now that you're off the meds you can show all the doctors how to open their eyes and see as well!! Congratulations for finding your own strength!!

  20. With all due concern & consideration, absurdly & alarmingly, misdiagnoses are rampant when involves respective nurturing & personal choice along with individuals relating with another & among society … Too often, these are matters involving guidance & maturation or personal preference of behavior. Autism diagnosis (pervasive development disorder …) needs to become scrutinized, prudent, & carefully applied else unscrupulous shady practioners will continue exploiting people, people will exploit as a crutch while those with actual conditions are neglected or relegated, & that reduces overall credibility (especially since psychiatry, psychology, & sociology become blatantly dubious & amid credibility crisis when influenced by systemic corruption with abusive & harmful pharmaceutical promotions). The patho-physiology needs particularly recognized to distinctly apply while the supposed spectrum needs scrutinized & narrowed. Actual autism is obvious with physiological basis that inhibits merely "emerging" from the condition. Risk of apparently normal behaviors to get misdiagnosed & exploited.

  21. Where’s Waldo was one of the first books I borrowed from the library. I never understood why I got into trouble when I circled him… hindsight is 20/20

  22. It’s makes me so sad that so many doctors and researchers continue to assume autism mostly affects boys. It’s just as likely that girls are equally affected but go massively in-diagnosed because of their ability to mask.

  23. I love being around people and I am an expert understanding peoples emotions. I was told i am autistic hshahahs

  24. Autism existed before people started diagnosing it, so many other differences exist which are not even a twinkle in anyone's imagination and yet people have to live with those differences all the time, it is good that this presentation highlights the need to value each person as they are. Well done Rosie!

  25. This is literally my life story. We, especially us women, have been taught how to act from start to finish. For as long as we could remember, we have been told to mask our autistic traits because we don't want to make the neurotypicals uncomfortable. I think that we have been consciously taught how to become more socially acceptable to the point where our masking is out of habit.

  26. They are gradually downgrading NHS and well on the way to privatisation. Once complete, the poor people and their autistic kids will be destined to life without hope so more likely to experience unemployment depression crime and all the ills that will lead to destruction.

  27. Thank you so much for speaking your truth, by explaining this phenomenon in a clear and empathetic way you are giving so many of us the language to express what we are struggling with. I've been trying to explain to those I am close with what autism means for my life, and why I am seeking a diagnosis for YEARS. This video is a tool I can now use to help them understand. You're saving Lives <3

  28. When are"Mainstream"people going to realize that the very concept of being"mainstream"IS bullying! and more importantly,is a sign of a unintellectual mindedness, and,in itself,IS proof of something mentally flawed) Naturally so-"Born a fascist,so to speak"

  29. My autism is not mild, according to the industry-reknown Taco Bell sauce-packet scale. I got that DIABLO autism.

  30. Eleven and she was gone
    Eleven is when we waved good-bye
    Eleven is standing still
    Waiting for me to free him by coming home…

  31. I have an Autistic child, high functioning Asperger (ASD). I always suspect he is one as a toddler but was only diagnosed at 14. Why? After all ASD is heredity and the father and grand father have similar traits and they do not think there are problems, claiming they are just loner. So even when my son is diagnosed, the world did not treat them any differently, I do have mixed feelings.

  32. Omg! I've never had someone explain so well, my exact life and feelings! Instead of explaining i can just share this. Thankyou! 💜💙

  33. A few days ago my lovely wife, after seing on YouTube some characteristics of autistic people, sugested I probably have autism. After that I read and sought videos about the topic and I am sure I am on the spectrum. I am 32 and have always felt I was a litle weird, but now I know myself a litle better and am quite happy.

  34. You are an incredible inspiration.
    Well spoken, i can relate on many levels.

    15+yrs of recent misdiagnosis in a closed mental health system.

    MA high honors in psyche, i hid not only stimming, mask behaviors, echolalia, difficulty with measurements, with an idedic memory in younger years. A classical pianist, iq 147 and struggled so much.

    Masking….i know this well.

    You are ….incredible
    Thank you
    For your courage
    For your willingness
    For your experience
    For your life
    Thank you

  35. en) I request for the change the Korean subtitle, especially in terms with Autism: For example, they translate Autistic into 자폐증 환자, which means 'Autistic disease patient', which is very aggressive to worldwide Autistics.

    ko) 자폐 장애와 관련해 한국어 자막의 교체를 요청합니다. 예를 들어, Autistic을 자폐증 환자로 번역하는데, 이는 전세계의 자페 당사자들을 화나게 할만한 것들입니다.

  36. It is not good for autistic people to be on the wrong meds. It isn't good for anyone to be on the wrong meds but I suspect it is much more dangerous for autistics due to the sensory issues. Too much or the wrong meds further masks, disorients and disassociates. My current medical doctor is wanting to up my doses and I hold fast while I wait for testing. Be patient with yourself even when society or medical doctors may misunderstand and you believe you are from another planet. Breathe. Meditation can be a good coping tool. Temple Grandin is my hero.

  37. A great talk from a strong woman who has been through so much awful stuff, including abuses and neglect by doctors, I'm so glad she survived it all and it's wonderful she's helping to educate us all. I identify with some of the things she mentioned such as hyper-sensitive to noise, meltdowns and exhaustion – I've got an acquired brain injury and some of these symptoms are common after brain damage. As she explains so well: it's terrible to be told to be how we aren't and cannot be, I wish for acceptance of my difficulties (and how hard I work to try to overcome them) and for adaptations to be made for us everywhere because they affect every facet of our lives – but often 'invisibly'. Thank you.

  38. Relate to that very much, though I am not autistic: to the melt downs, which I had from a very young age, the inability to get the hang of small talk, the overwhelm and the general impossibility to be myself because that is just not okay … And the masking that women are so good at … To this day I mirror people, which sometimes gets really weird when they notice that I take on their accent or tone of voice etc. like some little alien trying to fit it … 🙂

  39. it is also shaped like a ice cream cone but double ended and it has many layers to it, one side being positive and other side being negative.

  40. Autism isnt just a straight line or a circle with other mental health problems within it but rather a cone that has two sides one being negative and other being positive, sorta like a worm hole would be in space. These cone shapes can have multiple levels as well as different places for symptoms to appear, think of a waffle cone ice cream cone, the cone itself has a pattern on it like a grid and at the point of the cone being negative/positive will give you a more in depth scope of the effects/problems that would occur, obviously the negative side being the side most reside on, where the positive side will have people with extraordinary talents but also could be effected by negative side in different aspects of ones life. Levels come into play also cause within the level will show you how much a person is effected by such symptom. These levels are still not clear and how many they are but so far they have three levels in the DSM-5 but im sure there is more then they know currently.

  41. This is one of the best anecdotal expressions of my condition. Thank you for bestowing the words I need to express my deficiency to non-aspies. Pax et Amor

  42. The proper understanding and treatment of autistic individuals applies equally to other personality variations.
    The non-autism spectrum isn't just filled with "normal" people, all people are diverse and we will all benefit massively from recognizing that sooner than later. The cookie-cutter social behavior system is incorrect, immoral, and primitive, and it must come to an end.

  43. Thank you for this brilliant upload! It took me until age 46 to get a formal diagnosis of Autism (Aspergers Syndrome), even though my GP said he had known I was Autistic for over 20 years. I am high functioning Autistic, I have a full time job as a HGV Driver. My obsession is and always has been trucks. I can tell you everything about any truck just by a passing glance at the rear light cluster or rear view mirror. I can identify with everything you say, particularly about family visiting. You are a fantastic individual and I applaud the work you have put into this👋👋👋👋👋👋

  44. It's official. The "special ones" are now those who aren't autistic. There's not many of us non autistic people left, the whole world is now "autistic"……..Lol!……Jeeeeezus……

  45. Masking is exhausting. I never got a diagnosis but I hope I will someday soon just to confirm it more. I’m pretty sure I have Autism though. I’ve known for a while. I do mask a lot, all the time actually. I got so used to masking that’s it’s hard to stim in public. I get panic attacks a lot.

  46. i’m crying right now, i’m so happy i found this video it’s the best thing i’ve seen. literally everything she said, i have experienced. this hit so close to home and i got so emotional. thank you

  47. Best account of the illness I've seen so far. Shout-out for dealing with executive disfunction in wheelchair. I would have a crisis in front of every unplanned stairs.

  48. I think I'm autistic, I've even been told by my autistic friends that I seem autistic. But with my family, I can't get diagnosed or even suggest it to anyone.

  49. I was diagnosed about 3 years ago at the age of 54. I can related with what you shared. I remember when studying chemistry in the engineering school picturing myself swimming inside the molecules and hiding my thoughts afraid of been ridiculed. Noise is my worth enemy. I don't like looking at people eyes and even having to shake hands. Sometimes I hold my breath so I do not have to smell people. I remember getting so focus on my thoughts than I would miss my stop when traveling in the bus or going to study in an empty classroom and not noticing that a 50 people class had been going on for an hour before I had noticed. I still struggle understanding why I can't tell people exactly what I am thinking without been accused of insensitive, inadvertently offending people. It is exhausting having to adjust and adapt to the expectation of neurotypicals however It has also increased my ability to love, to feel compassion. At the end of the day, love is what really matter.

  50. I did a hearing test and my ears in age are younger than I am. But had trouble hearing my colleagues at work when they talk. Maybe it’s not my ears. Maybe it’s my mind trying to process it all among all the other sounds in the office and all the other stuff going on. Honestly I don’t know.
    I do know that a lot of what she’s saying sounds really familiar. “Be yourself but… Sit still. Stop fidgeting. Look at me.” That damn TV show in Australia. I hate that line.

  51. Since researching autism because my husband always felt our youngest daughter was autistic since her toddler years I can relate to everything you mentioned here regarding my daughter, and also to how I feel myself too – and I realise I have been masking all my life. Our daughter is definitely autistic but still not yet officially diagnosed, now I understand why she fidgets and what it’s called and how I’m wrong to stop her and how I can now understand her more. I didn’t realise I was autistic too until I tried to understand her. Thank you so much for doing this and sharing your journey with us, you have helped so many people and their parents/carers to understand more. Blessings to you, Kate x

  52. I didnt learn till 26… I can relate completely… And still struggle because where i live? There is only help for children on the spectrum… I mean i always knew I was different than most but i thought everyone was different… After i learned? Nothing changed, besides a label… It wasnt until researching that label that i truly learned and felt the difference… I could finally relate to someone, and I was no longer alone… Though it still seems the world was not designed for people like me, and I often feel alienated and an outcast… And as I grow older I fear life without my parents? Because my father helps me more than anyone.. I have trouble with so many things.. And from the outside? I often times look normal because I have trained myself to fit in, taught myself to be an incast and not an outcast… Though when I let my guard down and become comfortable, my autism appears and I am instantly judged for it… i have tried dating.. But when I tell anyone about my asperger or autism.. They flee. I have a daughter and was married at a young age… It was rocky and full of emotion, and I used drugs to cope, I felt like I was a burden to my wife… She deserved better.. And when I tried to change, she didn't want too, I didn't want my daughter to see me high.. I wanted her to see that her daddy is strong and not weak… My wife refused to quit using the drugs… And we split… It was a month later when I found out… And now? I live with my father, I've suffered through seizures and spent weeks in a coma… Even had a heart attack… But I am still here.. And still struggling… I have so few friends and the family doesn't really talk to me… I haven't had a job in 14 years and any job I had never lasted more than 2 weeks… I suffer in poverty and my loneliness causes a depression I can't seem to climb out of… My dreams and memories seem to only add depth… I am afraid that I will be alone my whole life. I have written to the local paper, to my city council, even to the presidents… Nothing… There is no help for me, and my passion to help others goes unnoticed… I have become a living ghost, forever haunting my self…

  53. I for awhile have wondered if I’m mildly autistic. Social situations I don’t do well, what helps me communicate is what I wear.

  54. I began to understand myself about 15 years ago.
    I’m on the spectrum.
    And it’s just me.
    I’m not less.
    I’m me.

  55. Your talk is incredibly helpful. So much of what you said is very familiar. My son has ADHD and like you described, cannot filter out all the noise in the classroom. He hears everything. He told me it was all he could do to cope with all the noise. He would go home at the end of school and self-teach all that he had missed because of his inability to filter. When he was in grade 10, he told me that he tried to be faceless/expressionless so no one would engage with him; that he had a select group of friends he would hang out with at lunch and he would plan whatever casual comments/conversation he would be expected to make as part of normal social discourse. I think it was agony for him, but I got the school's full support in allowing him to just leave when he became overwhelmed. I picked him up without fail so he could come home to his room, our animals and yard and just release the tension/anxiety. Now he does independent study and meets with a teacher once a week. He tends to procrastinate all week and spend the day/night before his meeting, handling all of his school work at once. Before he can settle and focus, he bounces around the house nervously, trying to engage me or his sister in conversation as if to buy time before he has to sit down and fully engage with his work. By some miracle of his intelligence and potential, he always manages to get quality work done and to score well on his tests and is able to discuss history/politics/literature when his teacher queries him. He is doing very well now and even has a part-time job at a market, handling customers in the check-out line, dealing with the cash register, chatting, answering questions, etc. Again, thank you for corroborating so many of my son's symptoms.

  56. This is the kind of education people need about these things. These are the types of talks that teens should be required to attend. Autism, as well as other disorders, are here to stay. They have always been here and they will always be here. Instead of trying to ignore them, people like Carrie should be given platforms to teach others from their perspectives dealing with these disorders. preschool teachers should be trained to better identify these differences in children and the way children are trying to communicate BEFORE they teach kids how to talk to one another – that way, children with those differences are not taught things that cripple them for life.

    And also, parents need to stop immediately becoming frightened by the words 'autism spectrum disorder', and instead learn to embrace the fact that their child's brain developed differently, and they're just going to have to accept the fact that this IS their child's normal. There's nothing WRONG with being autistic, the only thing wrong is when people start to treat them as if they're sick. They're not sick – their brains developed a different way. That is a biological difference that is perfectly within the realms of normality. Just look at how common autism really is and you'll realize JUST how normal it really is.

  57. I agree with much that Carrie says, and acknowledge that often women are not recognised as autistic, when in fact they are.

    But when it comes to the education of an autistic child, the parental aim is generally to help their child fit in, at the best and most sociable level of which they are capable.
    This might mean insisting that an othrwise non-verbal child to recognise the signs of an impending bowel motion and say "poo!" The advantage of this to the parents' life and sanity is enormous and needs to be considered.
    A child who stims by stamping and jumping can cause such problems with the downstairs neighbours that the whole family may be evicted from their apartment. Should the child be permitted to stamp and jump indoors, or should the child be taight to control this urge and only jump and stamp on the lawn downstairs?
    The child bangs its head until it is covered with bruises in every shade form navy blue through violet and khaki green to pale yellow. Since the child is highly verbal, and behaves nicely at church, the parent comes under suspicion of violent abuse. You the parent really force its child to wear a padded helmet, and only let it bang on the well upholstered couch while watching Thomas the Tank Engine.

    My gut feeling is that the isolation, and practical restrictions of NOT teaching an autistic child to limit its automatic instincts to stim, and do other anti-social things, is, of itself, debilitating.
    If the person cannot function in society, because their ongoing behaviour is anti-social to those around them, then they are a highly dependent person, and their dependency affects not only the autistic person, but those upon whom they depend.

    I find it hard to agree that teaching a child NOT to hnd-flap, jump up and down, or head-bang in public could possibly be more detrimental to the child's well-being than simply permitting every impulse of this ind to go unchecked, provided the child CAN be taught to contain them.

  58. Does everyone have some type of autistic symptoms? Her description of the noise in the coffee shop is spot on for me…..what does that mean?

  59. This really touches me. I didn't know I was autistic until recently my mom told me about it. I'm still mad at her, how didn't she do something when I was a child? Why did she hide it for so long? If she had just recently known about this, how could she just noticed it now? But in the other side, I'm thankful to my mom because I finally know who I really am and what's wrong with me all these years.

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