Missed Signs of Autism Growing Up

[Southern Discomfort]

Growing up the education and the health systems failed to pick up signs I was actually autistic. I feel cheated, academically because of that. What can do you think I can do to move past this and get on with my life now?

I received a diagnosis at the age of 25. I found a few old annual reviews from school and they all contain thinking like that I took thinks very literally, trouble making friends and knowing how to play with other children. Or that I couldn't remember more than two instructions. I feel angry at the system and how I could have done a lot better in school if they'd have known at the time. This was 1996 - 2007 really, not exactly the dark ages.

 

[Benjamin Dover]

I got my diagnosis of "Asperger's Tendencies" just before my 53rd birthday. My life is just now starting to make sense.

Socially, I'm not sure. I've read that a person is socially screwed if they aren't socialized by age 4 or 5. I'd like to find a way to deal with that.

I'm also curious about what can be done educationally. I'm reaching in the dark, trying to find ways to learn new things.

 

[Mattymatt]

I was diagnosed as "learning disabled" until finally, at age 37, a psychiatrist said that I am definitely Autistic. It explained a lot of things and experiences in my past. I went through three very turbulent years and I am now just starting to eek out a life. At times I too feel angry at the system but the mental health field is glacially slow to adapt and change. When I was discharged from the hospital, I was sent to a partial hospitalization program called American Day. This was two years ago and they were using cognitive behavior therapy handouts and models from 1996. Surely the field has matured since then.

 

[Katleya]

I'm not much older than you, and I've felt those exact same feelings, too.
I think you'll need to keep in mind that while the time period you mentioned isn't exactly the dark ages, it was also a time where information on autism wasn't as readily available as it is now (and even now... I'm sure you've seen the many posts of people who struggle to get a diagnosis), so I can see how people may not have connected the dots. Things also tend to be more obvious in retrospect when we know what we're looking for.

As for what you can do to move past this, I can only share what has helped me. That was taking a different perspective on things, i.e. yes, your life would have been different with an earlier diagnosis, no doubt, but that doesn't mean it would have been better or more successful. Maybe the diagnosis would have put you in a box where people kind of gave up on you and lowered their expectations. Maybe you wouldn't have learned many of the ways to adapt, and maybe you would have dealt with other forms of problems at school. And maybe not, but there's really no way to tell. At any rate, you're not doing yourself a favor by feeding the bitterness of what could have been (I'm not saying you are, but I definitely was bitter about it all for a while, hence the recommendation), so your best bet is really to accept that "different" doesn't necessarily equate "better".

 

[Judge]

I didn't even begin to unravel this mystery until I was in my mid fifties. Yet only a few years before I heard my own mother casually tell me that both her and my father once had me examined by doctors over some of my traits and behaviors when I was a very young child. That I could play by myself for hours on end. And that I didn't even begin to speak in sentences until I was four years old.

And yet medical science at the time simply pronounced me as being "fine", scientifically oblivious to the possibility of being on the spectrum of autism. Though in my case had I been singled out as having much of any neurological condition in the early 60s might have condemned me to an even more painful existence in grammar and middle school as one of the "special kids". Because of that era, I'm not convinced self-awareness back then would have helped or hurt me back then.

Even at my age, all that really counts for me at this point in life is to be able to stand back and say, "Aha! So that's what this is all about." Though I do feel better and not bitter about knowing even in the twilight of my life. At least I know now why life has been a struggle on a level where so many could never relate to.

 

[Progster]

I was diagnosed in 2012 at the age of 41. I did have some difficulties at school and was sent to a private tutor for remedial lessons for me to catch up. This teacher told my parents that I had autistic traits and my parents took me to the GP, but no referral or further investigation into it because in the early 80s, an autism diagnosis was only given non-verbal or lower functioning autistics. So various excuses were made for my difficult behaviour and issues - that I had lost a parent at a young age, that I had moved house, etc. So I was treated like a naughty kid and often punished for things that I wasn't doing on purpose or wasn't aware were wrong. If I had been diagnosed at that time, my parents and school might have been more understanding of my difficulties or behaviour, and accommodations might have been made.

It's not possible to undo the past - what happened, happened, but a later diagnosis does help to gain some closure for various unexplained difficulties and unpleasant experiences. I now have an explanation for them and that has helped me to move on, I know longer beat myself up about them so much as I used to.

 

[WereBear]

At least I know now why life has been a struggle on a level where so many could never relate to.

Which means anything we can manage is a big win, no?

Though it was impossible for me to have been diagnosed at the time I was born (I am Generation Jones, like President and First Lady Obama, Weird Al Yankovic, Gary Oldman, Michael Jackson, and Madonna) I don't think it would have done me much good anyway, since so many of us have terrible stories about "therapy."

Though I am thrilled to be diagnosed now, when it explains so much.

1. I could never consider grueling professions that required more than 40 hours a week, which made me look like a slacker.
2. It was always difficult to find friends with common interests.
3. I had to have lots of alone time!
4. I thought of animals as furry people

When it was:

1. I figured it was PTSD from a hellish adolescence
2. I am a genius
3. I am an introvert
4. Everyone should love animals

But even now, I'm not getting any help except through my own efforts and research. Check my new sig:

You know those bacteria who live in vents on the ocean floor, under tremendous pressure, and existing on geothermal energy? Science knows more about them than they do about women with Asperger's Syndrome.​

 

[Judge]

Which means anything we can manage is a big win, no?

Not really. At least not from my perspective.

A small "win"- perhaps depending on the circumstances. In essence I'm simply too old now to optimally make use of self-awareness to substantially improve my life. In a society that more or less "warehouses" the elderly regardless of their neurology.

At this point in my life my biggest "wins" all have the same common denominator. That money equals survival.

The satisfaction of knowing I'm on the spectrum is something more cosmic in nature. That I may have figured out what my purpose (struggle) in this incarnation was all about. Or at least a sizable chunk of it!

 

[WereBear]

A small "win"- perhaps depending on the circumstances. In essence I'm simply too old now to optimally make use of self-awareness to substantially improve my life. In a society that more or less "warehouses" the elderly regardless of their neurology.

My tactics for handling such:

• I have to live longer. I adjust what I eat, the supplements I take, and I'm already in an optimal area of the country to lower stress. In a 2005 study, "on average, people age 45 and older say they take four prescription medications daily." I'm taking NONE.
• I'm starting my own business to be my retirement income. Since I don't have anything else and Social Security (at least I've been a worker) is not going to be enough.
• Society has changed so that I can, at long long long last, publish my own fiction and find an audience.
• I have enough people in my life to stave off loneliness.
• Geeks have become cool... and old geeks have gravitas.

It's tough not to look back and reprogram my life with different turnings. But then I wouldn't be where I am now: uniquely poised to take advantage of the modern advances which will help me a lot.

Or, I'm just incurably optimistic. But you know what? I'll take it

 

[Flammie91]

I wasn' t diagnosed until I was 22 years old, although I had been tested when I was a toddler but I suppose the symptoms werent strong enough to warrant a diagnosis, or so they thought. I was tested again when I was about 15 but I backed out of the process right at the last minute because I thought the whole concept was rubbish, and for some reason it was never really explained to me in enough detail for me to truly understand it and what kind of impact it would have on my life. When I was diagnosed at 22 it was basically a finalization of the process which began when I was 15, I continued the process cause it was really starting to hit me that something was up after my experieces at several jobs.

I would say that it has helped me in that I know what Im dealing with and I can better deal with my issues and find solutions, but it hasn't made people really understand me or be more forgiving of my quirks at all.

 

[Siobhan]

I feel this way sometimes too. I'm relieved that my life makes more sense now, but I've gotten diagnosed with add, ADHD, depression, ptsd (which I actually do have), and BPD, which is a common one for women on the spectrum to get. They weren't even diagnosing girls until I was nearly done high school and I fell through the cracks. I still don't have a formal diagnosis, just self, and I don't have the money for a formal one. When the bitterness wells up I try to acknowledge it because it's a fair reaction to have, and then I try to move forward and focus on the relief I feel over finally understanding why I've had so much trouble my entire life. It doesn't always work because I feel like life and I have teamed up to waste 90% of my time and energy, but I try. Good luck!

 

[pjcnet]

You may or may not have done better at school by being diagnosed much earlier. You might have been put into a special school with less opportunities and this may have made you less able since you'd have a lot more less able children all around you, but there would have been less potential for bullying (if you were bullied). You could also have been put on horrid antidrepressants and/or antipsychotics as a child which wouldn't have done you any good at all and probably would have been detrimental, it's not uncommon for doctors / psychiatrists to prescribe them to autistic children, especially if they're hyperactive and/or struggle with meltdowns, then they often then become doped up "zombies", they might be quieter, but are less likely to interact with anything including school work.

I was diagnosed as a young child, yet my parents insisted on sending me to a normal school against all expert advice, I had an awful time being bullied and was totally the odd one out. At senior school it was even worse when other school children tried to bully me because they found my meltdowns entertaining. I had various meltdowns and heated arguments with teachers who didn't control the other pupils and often tried to punish me when I was the one being bullied. I got sent home on various occasions after incidents and my parents unfortunately still kept arguing to have me return against all advice, I remember the head teacher said something like, "it's not Paul's fault, but we are not qualified or experienced to deal with Paul's needs here", I really did have a terrible life there and unsurprisingly I hated school with a passion. In other words if they had diagnosed you as a young child and you were still sent to a normal school things might not have been any better for you.

The thing is you will never truly know what might or could have been, but you now need to put aside what can't be changed and look to the future. I know it's not easy, but don't automatically assume that you've definitely been robbed of anything because being diagnosed early might not have been any better for you and could even have been worse.

 

[mw2530]

I'm a few years older than you, but I as well feel like I was just a few years away from getting the help I needed when I was younger. I'd say if I was 6 or 7 years younger my life would have been different. It is really hard to not be bitter. I think I will always feel like I missed out on a lot of great things that others get to enjoy when they are young and growing up. I feel like I missed out on being care-free. We had to endure things that are difficult at young ages which takes some luster out of life. The only thing you can do is move forward the best that you can do. You are still very young and have most of your life ahead of you yet. There is a healing process that all of us have to go through I think, and I am still struggling with this. I actually tried to get a diagnosis a few years ago, but I was diagnosed with anxiety and depression. Which is also accurate but no ASD diagnosis. The therapist basically said that I don't know what to do with an ASD diagnosis or how to help someone who has it. I think that is part of the reason they did not diagnosis me. But after a year of therapy the guy agreed that I have ASD. I wish I had more answers. There may be some good to going through all of this in that I feel like my future years could be better. But I will never be fulfilled until I find a serious relationship. That is what has caused me the most pain of all I think; at least in the last 6 or 7 years.

 

[Flinty]

The medical profession missed my speech delay. This happens when you're 400 miles away from a competent specialist.

I might have been sent to points southwest...where the FASD kids from across the street ended up. Who knows what happens at that point?

 

[Bamboopillow2]

How does one find this out? I've been diagnosed with many illnesses and still feel something is missing. I'm 23 and I just cannot function in society. I do not see myself ever owning or living somewhere alone. I find it hard to hold a job and wouldn't know what to do. My mind is constantly Thinking about other things that I believe are more important. Im Told I think Too Much And Take THIngs Seriously. I Dont Understand... Who Doesnt? I Often GO on Omegle Or Talk TO people ON here and they MAke Fun OF me and say Are You Autistic? Are You Mental? Looks Like Brain Cancer Made It To You. The Truth Is That my Condition Is Worse When Im Alone. I was Jamming With Wooden Spoons In The Kitchen Earlier And Once Mom Came Home I Stopped. Pretend Nothing happens So I Go In My Room. I Spend Most Time There. Mom Is Alcoholic And My Father Is Someone Who Doesnt Live With Us And Lives Alone. He Hates Doctors. My Mom Dont Get Treated. Make Excuses I Have No Insurance Yet They Expect Me To Be The Normal One? Get a car! Get a job! Move out! They say it for years! It never happens. I get nowhere. What do they expect? I'm not happy. They can't seem to understand how I see things. It causes me to get violent. Mom yells and argues with this guy I can't stand! Been living in the same damn house since I was a kid and he ain't even family. Mom pretends and I act like he is to make her happy but I really can't stand the man at all. Sigh.... I just want to die somedays!

 

[Siobhan]

I

How does one find this out? I've been diagnosed...and still feel something is missing

It sounds like you're in a tough situation. What helped me a lot is this blog: Musings of an Aspie. She has a lot of really good articles under "essential reading" and a long list of books and sites you can check out. That's how I found this forum! Read through people's stories and look up the DSM criteria for autism on Google, and see if you recognize yourself. I, for example, always thought I was lazy and depressed, but it turns out that my executive function isn't very good so I can sit doing something for hours screaming at myself to switch tasks to something more productive, but I still won't. Good luck!

 

[Major Tom]

I had troubles throughout school as well. The school decided to give me an IQ test, which I scored high on. They then came to the conclusion that I was intelligent, therefore didn't need any additional help. If I really would have been smart I would have tried my darnedest to do poorly on that IQ test, and maybe then people would have taken me seriously that I was really having a hard time. Not just some antisocial person who got into trouble because they couldn't conform to the norms.

 

[Siobhan]

I had troubles throughout school as well. The school decided to give me an IQ test, which I scored high on. They then came to the conclusion that I was intelligent, therefore didn't need any additional help. If I really would have been smart I would have tried my darnedest to do poorly on that IQ test, and maybe then people would have taken me seriously that I was really having a hard time. Not just some antisocial person who got into trouble because they couldn't conform to the norms.

Same thing happened to me. My mom is actually still doing it, as well-meaning as she is. I made it through university by the skin of my teeth because I'm good at writing essays but I'd always wait until the day before they were due.

 

[mw2530]

I had troubles throughout school as well. The school decided to give me an IQ test, which I scored high on. They then came to the conclusion that I was intelligent, therefore didn't need any additional help. If I really would have been smart I would have tried my darnedest to do poorly on that IQ test, and maybe then people would have taken me seriously that I was really having a hard time. Not just some antisocial person who got into trouble because they couldn't conform to the norms.

You hit the nail on the head here!!! Schools do not seem to understand that you can have very high intelligence yet struggle in other areas. They at least did not understand it when I was going to school. Or they think high intelligence can make up for other shortfalls. To a certain extent maybe. I never took an IQ test, but was an outstanding student and got a near 4.0 in high school. Had a 4.0 GPA in college in arguably the most difficult major at that particular University. Then a near 4.0 for my Masters degree. To think that doing well in school and working hard actually worked against me to certain degree is just deflating and heartbreaking. I sometimes think I would have been better off just screwing off but that just wasn't in me. I would think one of the primary purposes of school is to prepare kids for life in the real world. Schools give extra assistance to those with learning disabilities. But if a kid has social difficulties then school just act like a kid will simply grow out of it.

 

[Kit]

Teachers have always picked up on something when I was a kid and some even thought autism. My report cards were not good either and had criticism like I had troubles with change in the class or how I don't follow the rules. One of my labels I had as a small child was "autistic speech delay" and one other label was "autistic like behavior" and I was labeled as an unusual child. So everyone noticed something. Even my parents admitted it too. I don't know why doctors missed the signs and wouldn't note symptoms. It was only educators and a social worker that mentioned them but they called it autistic behavior or autistic like behavior.