why didn't anyone notice sooner?

[madisen622]

with my psychiatrist appointment so close (approximately about two weeks) away one question keeps floating into my mind, "surely someone must've noticed, why has it taken me twenty years to get a diagnosis?" watching and reading articles and videos about autism and it's early stages in childhood my mom has been watching and pointing at the TV with me, making faces when statements like "having delays in speech" and "children walking on their tippy toes" come up on the screen. she told me all these were prevalent growing up, i still couldn't form full sentences when i was at the age of six, i would constantly walk on my tippy toes and flap my hands. it's crazy hearing all of these things and my mom not even wanting to attempt to see someone when i was young. im not trying to bash my mother if it appears that way, it's just been hard for me lately when it felt like everyone around me knew and saw i wasn't like other children and people even in high school but chose to ignore it. has anyone felt the same way? how did you deal with it

 

[Gerald Wilgus]

I did not deal with it all that well. In the 1950s through 70s autism was not well diagnosed. My intelligence and academics were such that people thought I was normal and my social dysfunction was a choice. Consequently I went through periods of trying to fit in and self isolation. Then in HS the isolation became serious and I never understood what was happening socially. No help was offered, and while I could talk about the material ways that prevented me from taking part in activities, I could never speak about my emotions and kept things bottled up until I would explode. My self concept and body image were as low as a fresh turd on a hot day. Only after my first research position and living independently did I recognize that I had to change myself.

 

[madisen622]

I did not deal with it all that well. In the 1950s through 70s autism was not well diagnosed. My intelligence and academics were such that people thought I was normal and my social dysfunction was a choice. Consequently I went through periods of trying to fit in and self isolation. Then in HS the isolation became serious and I never understood what was happening socially. No help was offered, and while I could talk about the material ways that prevented me from taking part in activities, I could never speak about my emotions and kept things bottled up until I would explode. My self concept and body image were as low as a fresh turd on a hot day. Only after my first research position and living independently did I recognize that I had to change myself.

i am so sorry to hear how hard growing up was for you, i feel like NT people can be so oblivious to things around them. when you moved out and started your position i understand you said you had to change yourself, was that due to societal pressures or did you kinda start to mask and mimic others around you in order to get by?

 

[1ForAll]

with my psychiatrist appointment so close (approximately about two weeks) away one question keeps floating into my mind, "surely someone must've noticed, why has it taken me twenty years to get a diagnosis?" watching and reading articles and videos about autism and it's early stages in childhood my mom has been watching and pointing at the TV with me, making faces when statements like "having delays in speech" and "children walking on their tippy toes" come up on the screen. she told me all these were prevalent growing up, i still couldn't form full sentences when i was at the age of six, i would constantly walk on my tippy toes and flap my hands. it's crazy hearing all of these things and my mom not even wanting to attempt to see someone when i was young. im not trying to bash my mother if it appears that way, it's just been hard for me lately when it felt like everyone around me knew and saw i wasn't like other children and people even in high school but chose to ignore it. has anyone felt the same way? how did you deal with it

Here's the irony. We knew our second child had Autism by age two for some of the same reasons you mentioned, as he was nonverbal, walked on tip toes, handflapped, had severe food intolerances, wandered as if in a zone without even stopping or looking if we called out his name, had sound and clothing sensory issues, in addition to having difficulties with eye contact and having other rigid routines and hyperfocuses of interest, yet despite telling this to many of his medical providers up to age four of our suspicions, and telling those medical persons his older brother was Autistic, they still had no clue or seemed in any hurry to diagnose or refer to a specialist.

So, even if your mom knew it was Autism through your childhood years, there is a good chance nothing would have been done about it unless she would have been very proactive in seeking many medical opinions and not giving up there until you got further diagnostics or specific answers. For the same reasons I mentioned in my last post in your other thread, many pediatricians and general doctors just are not trained, detailed or analytical enough to know enough about Autism or to pick up on those signs and symptoms, or to feel comfortable enough in giving diagnostics there.

We had to drive four to five hours to see an Autism specialist, when all those medical others seemed of no help. Then we brought along there short videos showing everything mentioned, and detailing all those core signs and symptoms there. Why is it so hard for doctors to ask more questions and to dig deeper when several core symptoms are there, as seen on the surface and/or explained to them by the caregiver? I mean, I rather have them do that too, than to just robotically listen to their breathing and chests, look in their ears or up the nose, look at their privates? I mean come on, can you do more than that? It's depressing just to think how many docs could have done more.

 

[Gerald Wilgus]

i am so sorry to hear how hard growing up was for you, i feel like NT people can be so oblivious to things around them. when you moved out and started your position i understand you said you had to change yourself, was that due to societal pressures or did you kinda start to mask and mimic others around you in order to get by?

You are kind. I was able to see people in relationships and they seemed more centered than I, as if having that need met freed up their energies. And, with that, my isolation turned into loneliness. I felt that I desired a companion and read a lot about self help and social and nonverbal communication. I have written a lot about my journey here, but here is a synopsis. I got into activity groups to practice being social . . . less pressure because skills and helpfulness counted for a lot. While I was still fearful of rejection I was getting to like myself and started asking women I knew out. Had one failed relationship but I was learning. Finally, taking a chance I called a woman I did not know from Chicago to arrange for a driving companion to a Sierra Club project in GSMNP. We hit it off, and a virgin at 28, I was amazed at her accepting me sexually, something I was not expecting. 44 years later we are still together and still having adventures.

Some of the good memories about how I broke out of my cage of isolation I use when I am feeling triggered.

 

[Aspychata]

My mom stuck me in ballet which meant walking on toes was perfectly acceptable. And lots of arm flapping in ballet, and very routine, you run through the same exercises every day. I continued ballet classes all my life because of the very structured routine it offers and yet it is very challenging.

I think when you offer young adults physical activities to lose themselves in, you give them discipline and coping skills.

People who have autism may feel clumsy however it's important to find something to do that engages our mind and helps with health. One time l fell on a treadmill. Another time l fell off a weight machine. Shock, embarrassed but no shame. Because accidents happen. So don't let being clumsy hold you back. Sorry - hope l didn't derail.

 

[Owliet]

"surely someone must've noticed, why has it taken me twenty years to get a diagnosis?"

it's early stages in childhood my mom has been watching and pointing at the TV with me, making faces when statements like "having delays in speech" and "children walking on their tippy toes"

my mom not even wanting to attempt to see someone when i was young.

has anyone felt the same way? how did you deal with it

I was diagnosed as a teenager. And I had similar thoughts like you do. i was only diagnosed after having a big massive breakdown in the last school that I attended before doing homeschooling and being referred to a child psychiatrist. After I was diagnosed, it was often so obvious when talking about how I was in childhood and as then as a teenager with my strange walk, my behaviors, my need to put things in order, obsessive special interests, Fine motor skills were not fully formed, need for repetition, speech challenges. I was so angry that no one had picked it up and whilst it can be argued that not all are specially trained to recognize ASD, one of my later psychs gave me an additional explanation. She told me that It’s really hard for girls to be identified to be on the spectrum. We tend to be expected as shy naturally, and often mimic behavior because we so desperately want to fit in. There are some psychs who still believe it to be male only and are reluctant to diagnose females. I was given some reading to help me make sense of myself because I didn’t accept my diagnosis at first. I had a lot of problems with coming to terms that the diagnosis confirmed what I had dreaded that I wasn’t normal and I wouldn’t fit in. It’s also didn’t help that the first support group I went to was all boys, and it Made me feel more isolated. Things really didn’t change until I went to university and met girls who were on the spectrum too. It was very liberating.

 

[Bolletje]

My mom just thought I was a quirky kid. She never really thought something was wrong with me.

 

[Neonatal RRT]

...and, there are people like myself,...52 years old before a diagnosis,...and if it weren't for a co-worker who is a parent of an autistic son questioning me,...and taking an online test on a whim,...I still might not have been aware that I have autism. I ended up with a well-done, fairly comprehensive professional testing and interview process. Well, come to find out,...looking at my testing,...I am towards the "far end" of the scoring scales for autism. My whole life makes so much more sense.

My parents, my family,...I had "behavior issues" and "Everyone has a label, these days." My family rejects the whole concept of autism,...I think more out of embarrassment on their part that they have someone in their family with "issues". They've already made a "moral diagnosis" of me,...and they are in no mind to reassess their thinking. So,...I don't talk to them anymore.

I work in a children's hospital and we deal with autistic children every day,...but other than 1 person,...no one,...literally no one,...recognizes autism in a co-worker of some 35+ years. So,...just goes to show you,...even healthcare professionals used to dealing with it in children,...are far less likely to recognize it in adults.

 

[Aspychata]

I was diagnosed as a teenager. And I had similar thoughts like you do. i was only diagnosed after having a big massive breakdown in the last school that I attended before doing homeschooling and being referred to a child psychiatrist. After I was diagnosed, it was often so obvious when talking about how I was in childhood and as then as a teenager with my strange walk, my behaviors, my need to put things in order, obsessive special interests, Fine motor skills were not fully formed, need for repetition, speech challenges. I was so angry that no one had picked it up and whilst it can be argued that not all are specially trained to recognize ASD, one of my later psychs gave me an additional explanation. She told me that It’s really hard for girls to be identified to be on the spectrum. We tend to be expected as shy naturally, and often mimic behavior because we so desperately want to fit in. There are some psychs who still believe it to be male only and are reluctant to diagnose females. I was given some reading to help me make sense of myself because I didn’t accept my diagnosis at first. I had a lot of problems with coming to terms that the diagnosis confirmed what I had dreaded that I wasn’t normal and I wouldn’t fit in. It’s also didn’t help that the first support group I went to was all boys, and it Made me feel more isolated. Things really didn’t change until I went to university and met girls who were on the spectrum too. It was very liberating.

My daughter would organize all her Halloween candy in 30 piles and then lay down in the middle with a huge smile. I remember taking her picture with her giant smile.

She did a lot of organizing of her toys. Lining up her Little Pony collection.

 

[madisen622]

I was diagnosed as a teenager. And I had similar thoughts like you do. i was only diagnosed after having a big massive breakdown in the last school that I attended before doing homeschooling and being referred to a child psychiatrist. After I was diagnosed, it was often so obvious when talking about how I was in childhood and as then as a teenager with my strange walk, my behaviors, my need to put things in order, obsessive special interests, Fine motor skills were not fully formed, need for repetition, speech challenges. I was so angry that no one had picked it up and whilst it can be argued that not all are specially trained to recognize ASD, one of my later psychs gave me an additional explanation. She told me that It’s really hard for girls to be identified to be on the spectrum. We tend to be expected as shy naturally, and often mimic behavior because we so desperately want to fit in. There are some psychs who still believe it to be male only and are reluctant to diagnose females. I was given some reading to help me make sense of myself because I didn’t accept my diagnosis at first. I had a lot of problems with coming to terms that the diagnosis confirmed what I had dreaded that I wasn’t normal and I wouldn’t fit in. It’s also didn’t help that the first support group I went to was all boys, and it Made me feel more isolated. Things really didn’t change until I went to university and met girls who were on the spectrum too. It was very liberating.

thank you for sharing! i hate the common stereotypes surrounding "men only having autism." im hoping my psychiatrist will not feel reluctant in diagnosing me, a deep fear ive had for a while now is him telling me "you don't look autistic sorry." it irks me how much ive been told that by people and my family since i said "hey, um i think i might have autism? but i think i need to do more research." this forum has opened up a new world for me in a way it feels liberating too, im glad things have gotten better for you

 

[madisen622]

You are kind. I was able to see people in relationships and they seemed more centered than I, as if having that need met freed up their energies. And, with that, my isolation turned into loneliness. I felt that I desired a companion and read a lot about self help and social and nonverbal communication. I have written a lot about my journey here, but here is a synopsis. I got into activity groups to practice being social . . . less pressure because skills and helpfulness counted for a lot. While I was still fearful of rejection I was getting to like myself and started asking women I knew out. Had one failed relationship but I was learning. Finally, taking a chance I called a woman I did not know from Chicago to arrange for a driving companion to a Sierra Club project in GSMNP. We hit it off, and a virgin at 28, I was amazed at her accepting me sexually, something I was not expecting. 44 years later we are still together and still having adventures.

Some of the good memories about how I broke out of my cage of isolation I use when I am feeling triggered.

thank you so much, i try to be. im so sorry you were alienated, i never wish that upon anyone. im so happy things are better for you, you deserve so much happiness and i hope it continues to go your way

 

[Richelle-H]

From remembering some aspects of my early life and things my mother hinted at, I must have been an extremely difficult child. Mostly from the raw panic I experienced whenever I had to adapt to a new situation. I was always more concerned with my own pursuits than the opinions of others. By that I mean you can only hear the phrases "You are strange." or "You are Weird." so many times before you tune them out entirely. I think it actually empowered me to be outside the norm.

I was never curious as I considered myself quite average in everything except perhaps intelligence. I saw no defect in myself but in others. Perhaps that is more than a trifle arrogant on my part, but it kept me moving forward through life. My diagnosis in my early forties was motivated by outside factors and I would not have sought it if they had not motivated me to do so.

Today, you would have to spend considerable time interacting with me before you would even catch a glimmer of my eccentricities. I am no longer masking and have possibly become too open, but not to any grave extent. I just love talking/writing about my life, which might be obvious from my posts on this site.

So yes, I am certain that it was easy to overlook the signs from the fifties on into the seventies and possibly a bit beyond that. I may have been labeled as nothing more than a difficult child, but I was never forcefully confronted with my social failings. As an example: I do remember a raging panic attack in kindergarten where I latched onto a pole in the school corridor over something quite innocuous that ultimately required the school to call my mother to make me let go of the support. I remember screaming my lungs out at the time. Even with this, I experienced no censure or was any therapy urged or suggested. So, times have changed, people are more aware now, and there are far more resources available, but I am still unconcerned about it all at this stage of life. I don't think anything could have changed the path I walked and, for the most part, enjoyed.

May you find peace within, with or without a formal diagnosis.

 

[Judge]

I was born in the 50's. Medical science just wasn't "up to snuff" to catch who and what I am. Even while both my parents knew there was something different about me and they pursued it in the early 60s. But between the times and access only to military medical personnel (my father was a career naval officer) they never had a clue about more mild forms of autism. I just grew up with the understanding that I was an introvert.

Even in the early 80s when I was formally diagnosed with chronic clinical depression, social anxiety and OCD. But autism? Nope. I had to figure it out many years later by accident. Hearing about this thing called "Aspergers Syndrome" on the Natl Geographic Channel's series called "Taboo".

Though of the few persons I ever told, my own brother seemed to think that it all made sense to him as well.

I suspect there may be many more of us than the CDC accounts for as 1.8% of society.

 

[Aspychata]

with my psychiatrist appointment so close (approximately about two weeks) away one question keeps floating into my mind, "surely someone must've noticed, why has it taken me twenty years to get a diagnosis?" watching and reading articles and videos about autism and it's early stages in childhood my mom has been watching and pointing at the TV with me, making faces when statements like "having delays in speech" and "children walking on their tippy toes" come up on the screen. she told me all these were prevalent growing up, i still couldn't form full sentences when i was at the age of six, i would constantly walk on my tippy toes and flap my hands. it's crazy hearing all of these things and my mom not even wanting to attempt to see someone when i was young. im not trying to bash my mother if it appears that way, it's just been hard for me lately when it felt like everyone around me knew and saw i wasn't like other children and people even in high school but chose to ignore it. has anyone felt the same way? how did you deal with it

I thought my daughter was normal. I thought special interests that she spent hours on painting, drawing, writing, arts and crafts, watching Wizard of Oz over and over was just a normal little girl. I remember teaching her multiplication with m&m candies before kindergarten.

 

[Jordy]

Just because no one told you you were different that doesn't mean no one saw it.

 

[Jeff T]

The sixties were a time when the old and new cultures in the US clashed. I think my parents just accepted people as they were, unless they went much too far. At the time, in my early years, I seemed delayed in some aspects, and well progressed in others. Autism was starting to be 'a thing' around then, but did most people know anything about it?
From ages 2 to 6 I think the Autism was more pronounced, then 7 to 16 the ADHD was more obvious. After that the two were equally distorted.
I'd been working for the US Govt for about 8 years when, in a driver's training course, the instructor mentioned that I had an "artistic personality'. I figured it was a group of personality traits, as I'm not very artistic. When the diagnosis of combined ASD and ADHD was given, I remembered that instructor- now realizing that he may have said "autistic'.
But apart from that, nobody said a thing apart from my ex-girlfriend (who mentioned I should get a diagnosis).
All these years life was fairly screwy, but the "onward and upward" outlook gave me rose-coloured glasses. Always thinking that someday, things would all come together. Well, it didn't!
Would having an early diagnosis have changed my life for the better? Don't know- it would have depended how I responded to diagnosis/condition.

 

[Gerald Wilgus]

What this thread is saying to me is that assistance at the right time of life could have made a difference to many here. Depending upon neurology and the basic support or lack of it, so many struggled needlessly. Some with a laser focus were able to succeed, and I have to admit that my focus to succeed in Biochemistry, Cell Biology and Microbiology was a goal that my ASD made possible, but at the cost of other aspects of my life. It has left me wondering what could be possible were we helped, even in small ways. I know now that my social immaturity was a barrier to unlocking my potential. For my mental health I cannot relitigate the past and must recognize that the person I was made a productive and interesting life possible.

 

[Ronald Zeeman]

To many autistic members in my family just fit in to take much notice older brother we all agreed was different. I am now the oldest look after the others.

 

[Fino]

People can hardly comprehend and deal with daily issues, I don't think it's fair to expect the average person to go beyond that. Why can't my dog take out the trash?