Missed chances for an earlier diagnosis

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This might probably apply to people who became diagnosed with AS in their later years. But has anyone here ever had signs of missed chances to get an earlier diagnosis of Asperger's.

I've known my whole childhood before I was finally diagnosed at age 18 that there was seriously something wrong with me, but my family has always constantly laughed it off and just assumed that I was just weird and shy. I even at one point considered the possibility of having autism but I knew my symptoms werent severe enough for something like that.

My parents noticed when I was a baby/toddler that I didnt pay any attention to them when they tried to call for me or speak to me. My grandpa thought I was deaf. When I was four, I was taking to a doctor to see if I had ADHD. Okay a couple of things wrong with that: #1 a stupid idea to test me for ADHD before I was even old enough to go to school, #2 I'm certain that I do have ADHD along with AS but because the stupid doctor insisted that I was fine no one will ever believe me that I really do have this and I probably will never get a real diagnosis for it.

Anyway, another big missed chance by my parents to get me diagnosed was in 8th grade when I was calling suicide hotlines cause I seriously considering killing myself. I was talking to this one guy who worked at a counseling center that I wanted to met for personal counseling but I was 14 and had no car or money. I had no choice but to get my parents involved. My dad talks to this guy for like 5 minutes on the phone then hangs up and tells me that I am to never speak to him again and that was the end of that. OUCH! Seriously. If I had gotten to meet this counselor, maybe he wouldve notice off the bat that I had autistic tendencies...or maybe not. Who knows? My high school counselor was the one who finally suggested that this maybe what was wrong with me. Then again...I had been meeting with her all four years of high school for serious one on one stuff and it took her until my final semester of high school for the light bulb to finally go off in her head.

I had not too long ago recently requested records from the place my high school counselor had my parents take me to to finally be diagnosed. In the records, my dad talked to the counselor about how I would constantly go off alone to play with myself even when I had friends over.

Seriously you dont know how majorly angry that made me...if my parents were any normal parents they wouldve realized that such behavior is NOT NORMAL SOCIAL BEHAVIOR for a child. That indicates signs of a serious problem with me and they just brushed it off or tried to spank the problem out of me themselves (which apparently didnt work).

I know alot of people hate it when their parents insist on sending their kid to therapy whenever they had the slightest quirk. But seriously I wouldve given ANYTHING to have parents who were alert and smart enough to realize that I was not a normal child. Instead they either tried to spank it out of me or insisted that I was fine. Their ignorance has done a lot of damage to me mentally and emotionally if you knew what I went through. It's especially prominent when they throw me into a different school every year without considering what effect that would have on a socially weak person like me.

Alright I'm done being pissed about the past for now...

Share your stories here...

EDIT: I understand that some of you with Asperger's may find the idea of having an earlier diagnosis or having the diagnose/label of Asperger's at all completely repulsing. Try not to be angry that this thread exists. This is for those who can relate to or share the same view on the matter as I do and I know that it's not going to be everyone with AS, aight?

Last edited by raisedbyignorance on 12 Nov 2009, 3:42 pm, edited 1 time in total.

My parents were certainly not in denial that there was something wrong with me. My problems at school getting along with kids was quite un-ignorable.

However, for the longest time it seemed like my parents thought the fault lay with myself in that I was doing something deliberately.

However, I did go to school counsellor, had a 'peer counsellor' very briefly (didn't really do much, I think I only saw that person like once in that capacity), and even a regular counsellor with the local Mental Health association. All of these were epic fail, since we had no idea I had AS. They gave useless advice that I had already tried and which had failed.

It wasn't til much, much later that I found out that regular counselling is mostly useless and a waste of time for people with AS.

I saw two psychiatrists, neither of which picked up AS. It wasn't til I was taken to an expert in brain injury (a neuropsychologist) that I was formally diagnosed.

Oh, yes. After Asperger's became a recognized disorder in 1994, my mom headed off efforts to get me diagnosed multiple times. I was withdrawn from school and home-schooled, then placed in a private school that was too small to have a school counselor, where both the teachers were untrained in psychology (one had an English degree, the other, theology.) I asked to see a counselor several times, as I had depression and could have used help; but was always refused... I think my mom must have been afraid that I would reveal that my stepfather was abusive, and get us put in foster homes, as she was frightened of the government and hadn't much idea how social services actually worked...

Well, since people with AS were labeled as "odd" or "eccentric," my being that way as a kid didn't draw much attention.

I saw a psychiatrist when I had problems in school. AS wasn't in the DSM then, but if he was any good at his job and realized why I was having problems in school (kids were mean to me), it might have led to more productive therapy that might have revealed that I had specific issues that he'd have recognized as abnormal. Instead, I forced myself to do better (his idea of helping was suggesting my parents punish me until my grades improved because I had no cognitive disability) and my parents stopped taking me to see him.

Sadly, there were enough things in life that should have told my parents something was wrong with me, but I guess they never wanted to see the flaws.

I missed it a few times, but I was not diagnosed with AS but still the same problem applied. My mom thought something was off about me when I was a baby, and asked the doctors about it and someone mentioned Autism to her and the doctor told her that no such thing is existent in girls, but only boys. So my mom was like "Oh okay," kind of thing and thought that all the quirks and social issues, and communication issues was just a quirk even in High School and junior high when people seriously thought something was odd about me she would get defensive and say nothing was wrong.

Eh, got diagnosed back in ... April.. or Feb. with Classic Autism.

So, at some point, even though they had to be prompted by a counselor, your parents did take you to be professionally assessed. You're just angry with them for not having the savvy to recognize a disorder that often goes unrecognized and undiagnosed (or misdiagnosed) even by professionals.

I can sympathize with the experience of having someone try to spank the autism out of you. Been there, done that. I lived. Not their fault, they had no way of knowing that I wasn't being intentionally obstinate and insubordinate.

What if you were still undiagnosed? What if neither they nor you had any clue that your were different than everyone around you, except in ways that you CHOSE to be different?

What if you spent so many years trying to explain to your parents and teachers and employers that these choices to be different, or odd, or less than fully cooperative weren't really choices, that in fact you couldn't help it and you didn't even know why - that you and they finally gave up even trying to understand?

What if you hopped from job to job getting fired every few months your entire adult life, in a desperate attempt not to end up homeless, until one day you're unemployed (again), staring retirement age in the face and have absolutely nothing to show for your entire miserable life except worthless collections of things you obsess on but can't even sell for cash. And then someone says to you:

"Hey...you know those odd qualities that make you so smart and yet such a loser? That's actually a brain disorder. And a whole bunch of other people have it, too." and suddenly you qualify for all kinds of help, because now you're 'disabled' (well, you kinda knew THAT in your heart all along).

Now imagine that you live in a world where there is no Internet, and that last part never happens. So you end up with no place to live, wandering around in the street begging for change and sleeping under a bridge, just another wild-eyed bum. Until the day you climb up on top of the bridge and jump off...

Give your parents a break. Its not like they were professionally trained psychologists and just didn't care. Be happy you know at all. Things could be a lot worse.

Earlier?

You are twenty years younger than me and I just discovered what I am.

What Willard said.

I hate it when people pull this crap on others, "It could be a lot worse" is a load of crap, people could have a lot of things a lot worse but people could have it a lot better as well. Not having AS, could be "a lot better" and not having to struggle in communication, struggling with sensory issues, and such would be a "lot better", so people have it worse than others for different things and waving that scenario you are waving is very annoying to be honest. Granted, I think she should/or he should lighten up on the anger towards said parent but still. The whole "This person has it worse than you," is a terrible tactic.

OK, to lay my cards on the table, I'm 40. And yes, I think there were times when unusual things about me were noticed, but not addressed in the most helpful way.

At age 6 I was put in remedial at school. I remember my mother having meetings with the headmistress. I was told, in later years, that I was just 'naughty' and I was put in a special class to stop me wandering off and make me pay attention. I might have believed that if any of the other kids in that class had disciplinary issues, but most of them were what used to be called 'backward' then (which I wasn't, my teachers said I was extremely bright), and at least one had Down's syndrome. So, I think maybe there was some confusion about exactly what kind of issues I was experiencing. The things that mattered to me personally - that nobody wanted to be friends with me, and that every lunchtime was torture because I was forced to eat food of which the textures made me gag - were totally overlooked. (Being in that class made my social issues worse, actually, because when I returned to normal classes, I was seen as a freak even by people who hadn't seen me that way before, simply for having been in remedial.)

At age 14 I was going through a period of being ostracized and bullied at secondary school, which came to a head with one especially prominent bullying incident which was witnessed by a large number of people in a public place. OK, the bully was dealt with, but then I had the head call me in and discuss why I wasn't making an effort to socialize with people (which was interpreated as why I'd been bullied because the incident had started with the bully snatching a magazine off me when I was sitting reading in a corner at a school disco) and what I planned to do about it. There seemed to be no understanding of the fact that I'd been making an effort to socialize, with predictable results, since I started at that school - it was tough, because I'd juuuust started making a few friends at my old school, only to be forced to go to a different one that none of them had gone on to, and to start from scratch with a different bunch of people.

Those are the occasions on which I thought somebody with a little more insight could have stepped in and at least - even considering the lack of knowledge of AS specifically at the time - said 'Excuse me, I think this kid has problems of a different kind'. Just counselling of some kind would have been a good thing, but I don't believe any of my schools had such a service - not that I was ever made aware of, anyway.

Well my anger stems from a lot more than that. I mean my dad knew that I was intent on committing suicide and forbade me from getting professional help. Seriously, what kind of parent does that? In my case of very ignorant one. Do you really think that telling your kid "I dont to hear anymore talk about suicide, is that clear?" is really gonna be the cure-all remedy for someone who is crying out for help? Because that's really what my dad did a few years ago when a friend went around me and told him I was contemplating suicide. In a case like this, that is just neglectful parenting. There wasnt even much talk about what I went through.

Plus my parents knew I was going through hell when I was in middle school but did nothing more but told me to just deal with it (no matter what emotional trauma "dealing with it" would do to me). The teachers even knew something was wrong with me...perhaps even more but there were no parent-teacher conferences to address the concerns. They just left me to deal with my sh*t in kind and looked the other way. Most people dont even bother to ask why I am being like I am. They just turn bitter towards me and be like "whatever" or they just mock and tease and give me dumb labels (like "the quiet girl"). Most of these people dont try to understand. And there are still alot of people out there really dont know Asperger's. Even though, then's been so much exposure to it, you would think that now people could see it in me right away but they still dont. I found that explaining it to them doesnt make any difference.

I would like to give my parents a break but I dont see it happening ever. I notice that there are a lot of parents like mine who have denial trips about anything that their children are going through. If a child is scared or concerned about something, parents would laugh it off and think that they're just being silly (and trust me my mom and dad have done this with me about 100 times in my childhood). They dont go any further into it than that and I just dont understand why. Not all children are trying to be deceptive. Theyre just trying to understand themselves and if some if theyre like me understood themselves better than their parents did even at a very young age.

When it comes to young children, parents need to take them a little more seriously and talk with them a little more about their concerns. Instead I find parents like mine who are laughing for having certain fears and worries. That can really make children feel like their concerns dont matter when you just laugh at them like that.

Sorry for the sob rant.

"I hate it when people pull this crap on others"

So do I, Whittenkitten. Exactly so do I. Willard’s comment flared me up, to be honest. I prefer to compare myself to those who have it better than me in some respect than to those who have it worse. I am Polish, born and raised so any attempt to show me someone who is for example a citizen of Afghanistan or another poorly developed country would be futile, greeted by me with disbelief that someone could actually think it could console me in some way. No, it isn’t consoling. I am just not able to put myself in a situation of someone living in a country where there’s no net access or where it is very limited so living in there I wouldn’t probably ever have a chance to stumble across this truth about myself, it’s just like that wherever you live, you consider the conditions of your life the most natural and obvious for you and let’s be sincere: you can’t imagine on a level different than just logical, cognitive, you could be someone else – born in a different place. I do know I theoretically could have been born somewhere else, in a place which would be much worse for me but by the very fact of my being born in this better place – better than some other people were born in – I perceive it my natural right to get access to a diagnosis (or any other goods available in here for that matter while not being available somewhere else), not caring about those who aren’t in such a lucky situation as me.

Same here. I didn't talk much as a kid. I didn't play with the other children. My mom thought it was because I wasn't into violent games. I also had my intense interests. The youth pastor at my church suspected that I might have Asperger's, but said nothing because he wasn't a psychiatrist.

About in the same boat. For me, my parents had a tough time trying to figure out why i "moved to a different beat," back in elementary school. This was from 1986-1991 (AS wouldnt be known until 1994, and even then it wasnt widely known) and i was referred to the school psychiatrist. Well, she and my parents put me through the tests (all of which i do not even remember): first assumption was childhood depression, but too many aspects didnt fit. My mother had commented on my "autistic tendencies" but i wasnt anything like classic autism. Eventually, the psychiatrist (dumb@$$ that she was), was asked by my parents, "What do we do and who could we go to?" and she replied, "I don't know, you're on your own. Good luck," then walked off. Since my DX about a year ago, my mother was infuriated about this memory, and that b17ch.

I'd like to think this kind of thing stopped once you left school, but sadly that's not the case. This is almost identical to the time I complained to an employer about being bullied and excluded by my colleagues. According to them, it was because I didn't have appropriate social skills, and they sent me to a psychologist. Thankfully, the psychologist was a more practical woman than anyone in the HR department, who simply told me that I was bored silly in my role and a very poor fit with my organisation as a whole (and I'm really glad someone else was paying her $200 an hour to tell me this). She also told me that I had further issues beyond this and I should get further counselling but, in her own words, she didn't do the "lie on the couch and tell me about your father stuff". I couldn't have afforded any other help at this point, so it didn't make much difference.

I've asked my mother as an adult if she thought I had problems as a child, or if she thought there was anything different about me. She told me she certainly did, but never really knew what to do about it. I believe she thought most of my problems went along with being gifted, and that I would grow out of them in time.

I've asked my father too. He didn't notice a thing.

I had palilalia, couldn't interact with other children and avoided them as much as possible, started teaching myself computer programming at the age of 5, and couldn't catch a ball to save my life. I understand your point. It is not that you expected your parents to know exactly what was wrong with you, only to recognise that something wasn't right. Looking back on it, you think "how could you have looked at me and seen anything that was normal?".

[quote="Shebakoby"]
It wasn't til much, much later that I found out that regular counselling is mostly useless and a waste of time for people with AS.

Sorry to hear that was true for you.
It is not true for everyone.