Why did nobody realize I was autistic?

Post Reply New Topic

This is a bit of a long description, I know, but I just needed to put down all the reasons that it should have been obvious to someone. If you believe me already and don't feel like reading it all then the last three paragraphs are the ones that contain my questions.


My mom told me that as a young child (probably until I was around 8 or 9) I would have a fairly severe meltdown almost every other day, at school or home, wherever. She said she never knew what it was that was making me get so angry, but that I would just freak out, screaming and crying and throwing/hitting things etc. If people tried to restrain me I would hit them and would not hold still, and she said that I never answered them if they asked me later what was wrong, and she said she thought I just didn't have an explanation. This was long before anyone knew I had a form of autism, but I think she was right, I really just didn't know how to explain what was causing me to feel so overwhelmed; I've never been good at describing my own feelings to others, even if it is a simple feeling, because usually I don't understand it myself.

Annoyingly, the school suggested I get therapy, and the place I was sent to treated me like I was just a mean, angry bully and a delinquent. I remember because I tried very hard to answer the therapist's questions, but even recounting certain experiences where I had a meltdown (often times related to bullying) would start causing a meltdown, and then they would threaten to have security come and get me and then tell me that when that happens, "You'll be toast." Well I sure as heck didn't want to be toast, so I usually would just shut down instead of having an outburst. I don't remember a whole lot from that therapy but I do know it didn't help me at all.

My mom said it was almost like I had no emotion at all in my childhood and especially as a baby, I'd just lay there with a blank expression; no eye contact; no normal speech milestones; I was often unresponsive to the environment (unless it was motion, she said I would hold my breath and be really scared on my little baby swing, even on the lowest speed). I would smile or laugh at inappropriate times. I would get extremely angry at tags in my shirts and I'd make my mom cut them out, I only would wear sweat pants because I hated jeans, and I was very afraid of loud noises. I also hated the sun, A LOT, and I still do; it was just way too bright for me to handle (I once actually told my mom I hated Jesus, because I thought he was the "sun" of God...) I could and would sit for hours watching the same alphabet video over and over. I took everything apart that came apart and then would put it back together exactly. I took everything completely literally and would get mad when people said things that didn't make sense to me. The list goes on.

I also had very few, or no, friends (still true of now). Most of the friends I did have, I only wanted to play their video games. I didn't want to go play outside with them because I didn't know what to do. I would get sent home from their houses because of my meltdowns. I just folded paper all day in every class I had even up into high school; origami was my childhood special interest, aside from video games (which I also sometimes brought to class, and consequently got in trouble for)

What I don't understand is this: why were all these things not a sign that there was some deeper fundamental issue (autism!) that I had? Everyone thought I was just a bad kid, maybe partly due to the fact that my meltdowns tended to be violent, but usually not directed at people unless those people tried to grab me (or if they caused the meltdown in the first place; in my mind it was always on purpose if caused by someone else so it would make me extremely angry at them). I was frequently bullied too, so it was probably a learned defense mechanism to get violent like that.

Is there a good reason they wouldn't have noticed this? I saw doctors about my problems, I'm sure my mom brought these concerns up with others. I think my mom said one person suggested autism, but at the time neither she nor the person suggesting it knew much about autism, and so she thought I didn't have it, and that if I did the doctors would notice anyway since it's kind of their job (apparently all mine were idiots). I ended up getting diagnosed with ADD instead when I was 9.

However, last month I had a doctor who, after analyzing my behavior and asking me a bunch of questions, gave me a provisional diagnosis in which he said he was basically 100% sure I was on the spectrum. Tomorrow is my first appointment to start the process of the full in-depth evaluation (I just want something more official, plus I'm very curious to see some specific, personal results about my autism). I'm glad I finally know why I've had so many issues all this time, but I just wonder what it would have been like if I didn't have to go through the majority of my life up to this point feeling like I was defective, and not even having the advantage of knowing why.

It seems like you'll get some services you need.

I'm glad, despite your childhood, that you have been able to get a job and to drive a car. This means you're strong in a lot of ways. You have not let your autism interfere with your desire for independence.

I had somewhat of a similar childhood. I was in special education most of the time (and this is before they had IEP's). I used to get in trouble for similar things as you (I would throw tantrums as well). I wasn't treated too well, either. I believe I could empathize with you there. Before I was 5 years old, I didn't even speak.

At this point, I've managed to do most things that are part of being an independent adult. I drive (got my license at 37!). I got married. I've been out of my mother's place since I was 20.

There's a strong side of me which advises you to not let your past affect you, for you do have a future to look forward to.

I could understand you being upset about the "system" not catching your autism when you were very young. But I would, in this case, "let bygones be bygones," and power your way into your future.

I don't know

I am starting to feel the same way about my childhood too... I was raised solely by my mother and we were poor, so I'm sure she wouldn't have had money to send me for an evaluation even if she had thought that I might be on the spectrum... I'm certain that never occurred to her though. (can't ask her as she is passed on now)

But I had alot of early signs - very few friends, didn't know how to make friends nor did I seem interested in learning to, I remember it bugged the heck out of me if someone came over and took something of mine even accidentally or rearranged books on my shelf, excelled in reading (I remember being told in an early grade that I was reading one grade up) but very poor with maths, was able to play silently alone for literally hours without a peep in my own little world, I remember my mother having to tell me to "look at someone when they're talking to you" so I probably had eye contact issues way back then, I probably could think of more examples!

I had many warning signs, and no doctor suggested to my mother to have me assessed .. I don't remember too many meltdowns, just the usual temper tantrums kids have, I have way more meltdowns now!

I think my autism is more noticeable now than it was as a child. I did have a few aggressive moments with my peers, from what my mom told me. I also had a very difficult time making friends and had a huge obsession with rocks. I don't really know much about my childhood though as I've never asked much about it. I've tried asking my parents, but it seems as though they can't really answer my questions. :/ I do know I was often very hyper, and i didn't start taking until about four or five. I was in speech therapy until the eighth grade when they said I didn't need it anymore though.

I was diagnosed with autism around twelve. I kind of wished I was diagnosed sooner because I would have probably gotten more help for my condition and not be worse as I am at the moment. I can't even drive or hold down a job because my autism and anxiety are so bad sometimes. I can't even cook or clean without bursting into a full on meltdown or outburst either. D: I'm like a child trapped in the body of an adult.

There is a lot of ignorance about autism. I think there is still a very stereotyped and rigid view of what autism is within the general public, and too often, I think that parents, teachers and other adults look for "non-autistic" behaviors or traits as a way of "cancelling out" the autistic ones. I think many people have thought processes that go something like "He can't have autism because he XXX's (something that is not typical of autism)." Heck, I don't even consider myself that ignorant overall (I had volunteered at a school for kids with autism when I was younger), but I still thought my daughter wasn't autistic because she was "happy" and played with her brother. Never mind her lacking eye contact, her stims, the fact that she didn't consistently respond to her name, and that her language was delayed and she couldn't follow commands...I guess I thought that if she was not sitting in a corner rocking and avoiding all contact with humans, she couldn't be autistic.

I don't know how rural your area is, either, but I also have found that in rural areas, the stereotype is even more rigidly adhered to because people haven't had significant experience with people on the spectrum who do not "fit the mold." So they fail to see the truly broad boundaries of the spectrum.

I grew up with ADHD. When I was a kid, that was basically a diagnosis for delinquent boys, so no one ever dreamed that a "good" girl could possibly have it. Now when I look back, I can clearly see that my childhood had ADHD written all over it. I think if I would have realized that at 19, I probably would have been pretty mad at my parents because they came down rather hard on me for things that, in the light of ADHD, they probably shouldn't have. And they had expectations of me that were clearly unrealistic in light of my neurology. In that regard, I am glad I didn't know until I was much older, because by the time I figured it out, I had already come to realize that my parents did the best they could. It may not have been the best for me, but it was the best they could do. But I have wondered how my life would have been different if I would have been treated more appropriately as a child. Had appropriate supports. Appropriate expectations. An understanding of "why" I wasn't like the other kids. The truth is, though, spending time wondering that is not really fruitful. The only outcome I can see it leading to is resentment, and I can't see how creating/allowing a psychological environment of resentment will be of any benefit to anyone. Best to take what you can and move forward.

I'm sorry no one noticed the real issue earlier. The good news is, you have an answer now. I can honestly tell you that I have grown and developed more since I was 19 years old than I did before I was 19. It is not too late. You can use your newly found knowledge to make some pretty significant changes in your life.

I can relate to you quite a bit with your childhood and with your condition not being recognized. To be honest with you, my family STILL doesn't believe I have Aspergers. And I don't care, or tell anyone unless they want to know. The important thing is I know what is on my plate so I can deal with it accordingly.

I grew up with a single mother until I was 6. She was a fantastic mother, but she was, for lack of a better word, clueless. I was a great kid, but like you I had meltdowns, I was quiet, I was almost always alone, I didn't know how to "play" with other kids and I no friends. I acted out quite a bit and was bullied a lot. Many teachers/people talked to my mother about me and saying things like I should see a therapist, I should be on this medication or that. But she never listened to anyone and just always viewed her son as "perfect." I love her dearly, but I feel a lot of my struggles in life could have been less impacting if I had gotten the proper help earlier.

However, I may not have been the person I am today without all the hell I had been there.

Like others said though, it's really only recently that the word on Autism has spread to the masses. 10-20 years ago it just wasn't as well known to many people and they would not know to classify you as such.

But like me, you are a very high functioning individual and I give you a huge pat on the back for surviving the life you have lived. I know what it's like. And I can honestly say, once you have all the knowledge in your court and posses the strength that you have, life gets tremendously better.

I wasn't diagnosed until I was 15. It filled in the questions I wondered about why I was different as a kid.

It's strange though, I was tested before at a very early age and they said I didn't have it, but much later on they did. I blame bad doctors.

This sounds a lot like me. My mom knew from about the time I was five that I was different; I never played with the other kids at school, was very stuck in my routines, had basically no friends, etc. By the time I was eight or nine she suspected autism, but didn't get me assessed, apparently because of the cost, and didn't even tell me of her suspicion until I was seventeen. It would have made my life a lot easier if she'd acknowledged that there was something different about me rather than keeping it entirely to herself, even if I couldn't get properly assessed.

Your childhood is remarkably similar to mine. I could have written the 2nd, 3rd, 5th and 6th paragraphs. I think once they labeled me as "bad" they didn't feel the need to keep searching for the answer once they had one. Plus if I had a reason to act the way I did, they couldn't demonize me anymore. I didn't get diagnosed til I was 11 even though in hindsight it was incredibly obvious.

I will start this by saying that I've not read a single sentence from your original post and am just going to respond to the title.

I felt a lot of resentment towards my mother and every other adult in my life because of the fact that I had not been diagnosed as a child. Me and my mother, who is a special educator for a cherry on top of the resentment, talked at length about this just recently. There were a lot of things that were a little off about me up until I hit puberty, but they weren't that far off from the norm. My peers eventually adjusted and accommodated naturally as they had gotten older, but for me things had stagnated and as I grew older I was no longer able to compensate to the point where I was able to semi-successfully meet the same demands placed upon my peers- especially when personal responsibility came into play and there was less prompting. Yes, there were signs. No, these signs weren't gigantic red flags for my given ages at the time.

I have yet to get the official diagnosis (something I will get by the end of the year hopefully), but I had a similar experience.
My parents thought that I was partially deaf because I wouldn't always answer and they took me to a place that tests for that, turned out I had better hearing than most people. A similar test for sight. I had many meltdowns in my first few years of school (each met with sever punishment.) Even went to a shrink. As far as I know, I wasn't diagnosed despite having massive problems. I think that the word is stigmatized so that way parents and other people tend to dismiss it.

Why they don't catch it until later? LIfe is just weird that way I suppose. Mine wasn't "caught" until 40 if that gives you any sense of perspective. There's a lot of odd similarities in my own childhood too. Then again, that could be my confirmation bias speaking.

People are stupid and lack imagination. I spent many years in self-help groups for adults from dysfunctional families, and never heard a peep about Asperger's, even though we must be somewhat more concentrated by that filter. It isn't a popular diagnosis with professionals, because they won't get kickbacks from a drug company for it. Most people assume that your thoughts and motivations are the same as theirs would be if they did what you do.