Diagnosed as an adult: What were you like as a child?

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I'd like to hear about the experiences of you who were diagnosed in your late teens or adult years.

What was your temperament and behaviour like as a child and young teenager? How about your inner experiences and thought processes? Why do you think you weren't diagnosed until later?

I was seen as being shy. I didn't talk to kids or the adults, but when I had to, my voice was very quiet to the extent nobody could ever hear me. My lack of social skills was hidden by me not socializing and by being too quiet to hear (and quiet voice was seen as shyness). I had no academic problems nor behavioral so nobody had any reason to be concerned. In primary I didn't think I was any different than the other kids other than being shy since that's what I'd always been told; I was "just shy" so I thought nothing of it. I think I was diagnosed so late because I had no speech delay, I am high functioning, no school problems, and was seen as just being shy.

I don't "think," I KNOW why I wasn't diagnosed until adulthood -- because I was born in 1961 and even though Hans Asperger had formulated his ideas in the 1940s, it wasn't a diagnosis in my childhood. Quite simple.

It was as late as the 1990s that this diagnosis even started getting handed out in anything more than sparse numbers, or recognized, particularly in girls (Daryl Hannah was fortunate to be someone of my generation who did get recognized early).

So, I'm female and I grew up in the 60s and 70s when kids like me were just dismissed as "shy," "introverted," "odd," "sensitive."

That's the basic description of what I was like as a child. From the earliest age I can remember, I had moderately severe sensory sensitivities where certain clothes, fabrics and clothes labels drove me crazy but I wasn't even old enough to articulate what was happening and why.

I also had severe "shyness" to the point where, if someone knocked at the door of our house and I didn't already know who the visitor was going to be, I ran and hid under furniture. When I was school age, I started suffering from selective mutism. I could barely speak to anyone in school, and then only in a whisper. I was a loner and didn't know how to play with the other children. I walked around by myself at break times. The only friends I got to have were ones that were kind of set up for me anyway by my parents.

I had temper tantrums at home arising out of sheer frustration with things like clothing intolerances that my mother just couldn't understand (she thought me an ungrateful brat just because I rejected violently a dress she'd bought me, not realizing I wasn't being ungrateful, the dress just fit horribly with scratchy fabric and instead of being able to just say so, my senses went into overdrive and I had a meltdown I couldn't even HELP or STOP, let alone avoid having).

None of the issues I had were ever looked into. They were "problems" in my family but it was The Dark Ages -- it was the freakin' 1960s. Therapy, counseling, child psychology etc wasn't even done in the UK in the 60s.

You were slapped -- by teachers too! -- and told to stop being naughty. When suffering my worst breakdowns in communication, my own mother told me I must be the spawn of the devil or that I was possessed by the devil. She said it angrily and hatefully because she didn't know what to do with me when I was having a meltdown rising from extreme overload of senses and social burnout when forced to be part of overwhelming situations.

In the 1960s and 70s NOBODY thought "autism" or for that matter anything else, when faced with a child with these struggles. Autism in those days was thought to be strictly "severe" -- not to be offensive, but only if a child was permanently rocking and drooling in a corner and never spoke to anyone, never looked at anyone and never interacted, were they then even taken to be diagnosed with autism.

All other kids were just thought to be difficult, weird, over-sensitive, troublemakers, tantrum throwers or "evil" for causing problems.

At the same time I was an extremely bright child academically, and had a vocabulary beyond peer level apparently. I was slightly gifted slightly beyond peer level in art, music and creative writing. I grew up continuing to be naturally good at these things and hoped to make one or all of them my career.

I was daydreamy and lived in my own head A LOT. I would rather sit at the side of the class and think my own thoughts than be part of the class. I knew answers but never raised my hand.

My mother said vague things about the teachers always wanting to call my parents for a meeting about me. My parents are dead now so I can't ask more about WHAT exactly this was for. My mother only said vague things about "Because you were gifted, but we didn't want to 'make a fuss'." I asked why not, and she said "You couldn't handle it -- you were hiding under furniture for strangers!"

I now wonder if she was just putting a spin by saying they wanted to talk about "giftedness" and instead maybe they DID want to talk about something more -- like possible autism. I will never know now. I'm thinking of trying to access my childhood medical records to see if there's anything in there, but I wouldn't be surprised if 1960s records don't even exist anymore, destroyed or never digitized.

I was always wanting to be at home, sunk into my own thoughts (I could just stare at a wall and feel entertained because I was thinking my own thoughts and ideas about things, making up songs in my head, or pondering things.)

As a teen I became more withdrawn still after bullying at school. I liked to be in my room writing songs and listening to music. I was obsessive about things, I went through a phase of going through my record collection listening to every separate instrument to see what was really being played, and noted down my progress. I actually learned a lot about music arrangement that way, and later began to record my own music. I became a bit of an autodidact, and still am.

But to just repeat, one huge reason why some people are only getting diagnosed now as adults and were "missed" when children is because there WAS NO diagnosis for anything but clear, severe, obvious autism, back in my generation.

As a 42 year old female who was just diagnosed a month or two ago now, I can easily say I wasn't diagnosed earlier because as a child there was no Asperger's back then (not until I was in my mid to late 20s, married, and already had two of my three children). When I was little there was just autism and you had to have a speech delay, no two ways about it. I didn't.

I did, however, read very early, have a precocious vocabulary and mannerisms, get called an "old soul". I was shy to the extent of being worked with by siblings and being subscribed to mail order book clubs by my mother that featured stories about girls my age making friends and other sorts of real-life examples of how to "be". I was very quiet and introverted, and tended towards being solitary and having a very good ability to focus (so they also couldn't tag ADD or ADHD on me, when trying to figure out what was "off"). My father died when I was barely 4 years old, when we had just moved to this state, so the fact that I was SO very shy and quiet and whatnot was likely attributed for a couple of years to that trauma. Back then nobody was divorced and nobody else in my class had a dead parent so I stood out for that reason already, and nobody was going to single me out as being particularly different when I was just the shy, quiet, sad little new girl.

I toe-walked as well, and recall my mother spending a great deal of effort trying to get me to "stand down, Jenny, stand down!". The doctors said I should be enrolled in gymnastics and/or ballet but I was far too shy and became extremely upset and scared when we even discussed signing me up for such things, so those never happened.

I also had meltdowns when it came to some sounds, especially fireworks, couldn't tolerate being touched on the back of my neck, and was terrified of the dark - those were things we worked on actively in my house. One of my oldest brothers made a game called "dark closet" where he would tell me funny jokes and stuff while sitting in the dark closet, to make it less scary for example. And worked a long time getting me used to having someone touching my neck by giving me little massages while watching gymnastics on tv (to help me get interested in it because it was said it'd be good for my toe walking) things like that.

And I had terrible coordination, always bumping into things and having bruises I couldn't identify as coming from any injuries I could remember. I had a Dressy Bessy doll and was encouraged to use it as much as possible (the doll had many zippers, buttons, snaps, buckles, and shoelaces to practice tying, things like that) when I was around preschool or Kindergarten age, and I definitely needed help using a knife and fork together to cut food until I was nearly 13.

Whenever possible, in a new environment, I would stay right by my mother's side or else find any animals nearby to play with. Animals were always preferable over other children. (Okay, still ARE preferable over many other humans.)

I also "Zoned out" a lot, which I wrote about in my blog: http://livinginparentheses.blogspot.com ... g-out.html

along with some other childhood memories: http://livinginparentheses.blogspot.com ... ories.html

including the problems I had with birthday parties and especially the games we'd play: http://livinginparentheses.blogspot.com ... s-kid.html

(Easier to post the links than copy and paste multiple lengthy examples here, hope nobody minds. I'm not looking to drive traffic to my blog for any reason other than ease of posting though, I don't have ads or anything like that on there, don't worry!)

Anyway, that's the basic answer as to why I wasn't diagnosed earlier - no speech delay in a child born in the early 70s meant no autism. It just is what it is/ was what it was.

Edited to add: I forgot I had written a blog post about why I wasn't diagnosed back then and why I was now, so may as well link to that as well since its exactly what you're asking here - http://livinginparentheses.blogspot.com ... s-now.html

Very late walking - but when I did, just got up and walked, never went through the crawling stage etc.
Very late talking - but when I finally did, talked in sentences, never went through the usual earlier vocalising stages.
Taught myself to read with minimal help and was reading fluently (children's stuff) at four years
Fascinated with insects, cats, water, and played with these rather than toys
Academically and musically gifted - hearing tests showed sound perception of very high frequencies most people can't hear
Had an extraordinary ability to recall information - for example a teacher thought I wasn't attending so asked me to repeat what he had just said - I responded with everything he had said for the past ten minutes verbatim, it was like turning on the play switch of a tape recorder in my mind
Could read textbooks and later during exams recall whole pages spontaneously
Extremely poor at sports, very uncordinated and clumsy, weak muscles, (though surprisingly best at swimming)
Frequently sick with stomach aches, food allergies, skin rashes, infections, very poor eyesight
Was not interested in toys - if weather stopped me going outside, I passed the time reading encyclopedias
Very good memory including pictorial memory
Terrible eyesight
Very solitary "likes her own company"
Was always trying to figure out the whys of natural phenomena which that I didn't then know were physics
Preferred to teach myself rather than rely on teachers where possible - eg languages
Could solve (some) difficult maths problems in my head though some of the working detail seemed to happen so fast that it was almost subconscious and so when asked for the working process, couldn't provide it - this puzzled maths masters and myself
Isolated at school except for the last two years, bullied, the usual catastrophe
Very serious child and only ever relaxed when I was safe and alone with nature.
Knew I was different from other kids and all of the adults I knew but not why nor how
Hated violence of any kind in life or films, it traumatised me and still does
Never liked telephones, I seemed to be the only person in the world who didn't like them
Never comfortable with a lot of noise and people around me, especially hated crowds
Hated lawn mowers and noise like that and still hate it
Hated having my hair cut, really hated the whole deal with that
Had a few favourite foods and hardly ate anything else unless forced
My ideal world as a child would have been to live on a desert island with cats and books and no people

- solitary, reclusive, antisocial = "she's just shy"
- lack of eye contact, strange gait = "she just needs to learn manners"
- sensory overload, dizziness, pain, exhaustion, nausea = "she's just being a hypochondriac"
- hyper-focus on narrow interests = "she's gifted, let's place higher expectations on her!"
- overwhelmed, hopeless, suicidal = "she's just being manipulative"

I didn't cause problems. I was quiet; I liked to hide in my room and read. My father also had undiagnosed Asperger's. There were other problems in the family, like my brother running away or climbing onto the roof or otherwise causing my parents stress.

In grade 3, we moved and my new teacher tried to force me to make friends and play with people when I wanted to spend my time reading. I started considering myself an alien, a nobody. I worked hard to hide my deficits. Anxiety skyrocketted but I kept under the radar. I was diagnosed at 17 when my aunt (who has a son diagnosed with autism at the age of 3) discovered me pacing at a large family reunion and talked to my mother about it.

Much of my life I unsuccessfully tried to pinpoint what it was that made me wrong. I wanted there to be something that meant I was a person, as valuable as any other, just with a condition that made me a bit different. I was relieved to discover I was autistic.

However, there is also the problem of teachers not saying anything. My mother recently talked to my grade seven teacher and discovered that she had had suspicions of asperger's. If only she had said something then, I could have figured it all out years sooner.

I was also born in the sixties so there was no Asperger's/HFA diagnosis when I was kid. I don't even know if they had an actual Autism diagnosis for more severely affected people back then.

As a very small child, I remember that I was pretty much normal. I played with my brother and with other kids like a normal kid. I do remember though that I was more interested in the activities we were playing than in the kids I was playing with. I did not have any delays in development and I just seemed like a regular little kid. I wasn't really shy and my mom says I was actually really social. I do know that in many pictures of me as a kid, there is that tell tale Aspie stare and I have always had a side glance that on a previous thread a while back ago some other members here also said that they have. At first they all thought I had a "lazy eye" but nothing we tried could correct it. Then later I found out that that eye is equally as strong as the other and then later another doctor told me that that is actually a proprioception issue which is something that I very recently found out that Autistic people deal with.

But I was a very polite, normal little kid. Once I hit around 8 though is when I really started to be set apart from my peers in my behaviors. That is the around age for some girls when they start to transition from more activity based play and start to move into a more social based play structure. So many girls in my class were starting to spend more time talking than playing activities when they had free time. I started not being able to figure out how to fit in.

Then at ten I developed Misophonia. I had always been sensitive to noises and textures and things like that but when I was very little, I was in environments that were not as sensory overstimulating like I am in now. I had never lived in a congested area and I was a kid who played a lot outside in the woods and in very organic areas. But after developing Misophonia my sound sensitivities really increased. We were also a military family but most of the places we lived growing up were very quiet.

By the time I was in middle school and high school, I had pretty much become a loner and kept myself occupied with my sports and my music. I had pretty much given up trying to fit in and trying to make friends at school. I did have some friends because they were the kids of my parent's friends and they were always nice to me because they were brought up well. But other than that I had no real friends. In my 3 years of middle school one girl invited me to her house one time and that was it.

In high school I did much better because I hung out with other kids who were also socially different. They were well brought up and very accepting and very intellectual. So we got along well. I was even someone's girlfriend all through high school and into my sophomore year of college but that ended up not working out because even though he was dating me I never understood that he was. He even asked to kiss me once, he was an amazing kid, total gentleman and one of my best friends, but I did not understand about kissing in a romantic way so I was kind of surprised and asked him why he wanted to. So he did not kiss me. He was such a sweet guy and I was 100% clueless.

In college I hooked up with a really great church and had lots of church friends but none of them understood me and so I got a lot of grief from them because of my Aspie traits that no one understood. But at least I had friends. But later on I realized that only a very few of them were real true, friends, the others were just friendly because I was a church member.

But as a teen I spent a majority of my time either in sports or locked in my room and hanging out with the cat. My husband says I was raised by my cats because I am just like a cat in many ways. I had a lot of trouble communicating and I constantly felt bullied by my siblings. Even if they may not have been intentionally bullying me, they were reacting to my Autistic and Misophonic issues and those reactions had the same affect as intentional bullying. And I know there was some intentional bullying but I doubt anyone will ever admit it.

I was a very good student except in math and chemistry. I really sucked at those. But even though I was an excellent student I dropped out of college because of sensory overload issues. I was having meltdowns all the time and after one particular massive meltdown/breakdown I just could not continue.

I also had a lot of depressions in my preteens and teens. I started having regular suicidal thoughts at around ten. The depressions have stayed with me and are a regular part of my life now as well as the anxiety. I don't mind it though and I don't take any kind of medication because for me it is very important that I actually allow myself to go through whatever I need to go through. So I know they are going to happen and I just ride them out and get through them when they come.

But I had great and happy times as a child too. It was not all misery. I love all the places I lived and all the cultures I was able to experience. I had fun times with my siblings when they were not torturing me and my sports and music were amazing outlets where I found great pleasure and fulfillment.

I think I have a very unique experience--my parents kind of knew I was autistic, but because I was receiving therapy and special ed services under other diagnosis', they resisted an autism diagnosis.

I was mostly considered very shy and quiet. Even as a baby, I was considered quiet; looking back, this was a sign of difficulty speaking due to cerebral palsy, and expressive language issues due to autism. I was also a very independent, introverted kid even as a toddler. I didn't want to spend a lot of time around people, and when I played with kids more or less my age (or any kid at all!), it was considered an accomplishment. I was in therapy (mostly speech and occupational therapy) for my developmental disabilities from the age of two and half until I graduated from seventh grade.

I tried not to talk to people as much as I could. When I did I was so prone to saying something way off topic or inappropriate that they'd get angry, leave me alone, and in one instance, drag me into a fight.

I am a more of a shutdown autistic then meltdown one so I did not display obvious stims but the "painfully shy" label was used. I scored high on a IQ test but my grades never reflected that so the "he does not live up to potential" description was used. After second grade in 1965 after failing every subject my public school had a meeting with my parents in which they said we just can not get through to him you have two choices home school him or send him to a private school but we can't have him. Private school was chosen and the after the rabbi said we can help anybody. I went there while seeing a psychologist for play therapy. No diagnoses is remembered. It is likely this is because 50 years has gone by. But I wonder if my parents were intentionally not told of an autism diagnosis. It was the era when the "refrigerator mother" theory of autism was conventional wisdom. The theory held the parents never wanted the child in the first place and thus treated them coldly creating a robot with no emotions in a human body. I will never know as the records are likely long ago thrown out, people involved dead. I guess I improved enough as my public school accepted me for fifth grade. Then the bullying began. Outside of school things were good. In that era what is called free range parenting today was just parenting then as it was normal. That meant you were left alone often as it was expected you would to figure out how to play by yourself. Also if you disappeared outside a few hours parents did not panic worrying that you were a victim of a predator. That allowed me to become self reliant in certain areas and explore my interests.,

As someone who is 47 and born to very conservative parents who were exquisitely socially aware of image and etiquette, I wasn't diagnosed because a diagnosis meant a person was broken and would bring shame on their parents and family*. So, rather than face the threat of being sent to an asylum, I hid away my sense of Self and any confidence I might have had in her and instead did my best to build a shell that could conform to their expectations. I didn't too well, but it's amazing what a child will do for "love".

*important to note that mental illness runs in the family & my mom was institutionalized briefly as a young woman by her parents. Likely for AS/ASD traits and possible mild bipolar.

I don't know whether I count, as I am not officially DXd (just unofficial statements and urging to get DXd by two psychs...but I have my reasons). But FWIW:

1. Lots of loud noise plus lots of movement/visuals made me blank out and I would spend my time on the playground with my head on my knees/eyes covered by my knees, rocking. Had (and have) hyperacusis, couldn't (and can't) stand certain specific sounds, such as chewing, also hated loud sounds in general (physically painful). Would rock, twirl my hair or perform other actions to sort of self-hypnotize into not "feeling" or "seeing" what was overstimulating me/mental escape route.

2. I would find something that I thought "worked" socially and repeated it dozens of times, wondering why it didn't continue to work each time. (For example, telling a joke someone thought was funny, then re-telling it and re-re-telling it because it had made someone smile before, so why wasn't it making that person smile now?)

3. Horrible stomach issues swinging back and forth between painful constipation and diarrhea.

4. Had to observe other children and mentally do what I now know of as social stories, but there was no word for it back then: I would go over complete conversations in my head to plan how my tone of voice would sound, how I would position my body sitting/standing, what the person might say and what my answer should be, etc.

5. Flat affect. My mother was always telling me I had "no facial expression" or that I looked "vacuous."

6. Flat voice that was described as "like a robot" by quite a few people. I actually taught myself to make my voice go up and down, etc., again, by observing and copying.

7. Constant failure at tests because I would see many words on one page and would blank out and not be able to interpret any of them.

8. Sat alone in the lunch room, other kids didn't want to sit next to me in the classroom, last picked for sports teams.

9. Terribly uncoordinated, constantly tripping and falling over something...or nothing at all, lacked (and lack) depth perception, couldn't catch a ball, couldn't gauge distances.

10. Bullied, until I got better at mimicry.

11. Very poor at gauging social cues (i.e. couldn't tell when a person was bored or interested, when I'd said the wrong thing, etc.).

12. Hyper-focused on my own interests.

I appreciate all your detailed responses everyone!

LivingInParentheses, I read those blog posts too so thanks for that. They were certainly interesting reads.

ah so you're the one person who has read some of my blogs.

well now you can say you "knew me way back when", when I'm famous someday. (yeah right). LOL

Thanks for reading and commenting nicely about them!