Who benefits most from a childhood/early diagnosis?

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This question was raised on another thread, and I thought it warranted a thread of its own.

When people of my generation were at school, Asperger's and ADHD was unheard of. And I don't recall many problems in the way of disruptive behaviour in the classroom - such behaviour was simply not allowed.

I was never very happy at school, but I did OK educationally until I collapsed under the pressure, and walked away from schooling into a lifetime of short-lived menial jobs, failed business projects and loneliness. I married at 21 years old, and we raised a family. We had some good times, and my children have all done reasonably well, but we were always on our own - my social ineptitude limited the whole family to conform to my inadequacies.

But by some standards, I led an apparently successful life - I was never unemployed, never claimed benefits, never turned to crime. We bought a house and lived in it for more than 20 years. We had some good holidays, and the children never went hungry. I was never seriously ill. But on the inside, things were very different.

Things are different today - classroom disruption seems to be the norm, and every school has significant numbers of children who have been diagnosed as being on the spectrum. In the 1950s, I suspect that if we had not all been kept so firmly in line, some of us would have displayed many of the present-day symptoms of autism.

So the question is this - if I, and people like me, had been diagnosed at school, then would I still have gone on to make my own unaided way through life, or would I have become dependent on Welfare? And, whatever the answer, would my childhood diagnosis have made my life any less tormented than it was?

I believe that a high proportion of petty crime is committed by people on the spectrum, but we usually only hear about Asperger's etc when the crime is a major one such as computer-hacking the world's military systems, or murdering one's own loved ones.

So - who benefits from an early diagnosis? The schools? The crime rates? The welfare services? The individuals involved?

Or is it possible that a schooltime diagnosis merely serves to convince people that they will simply never be able to achieve any kind of success? It is frequently suggested that many important people in history were probably on the spectrum. But would they have fulfilled their potential if they had been told at an early age that they were probably Autistic?

Well I can't say about other people but I can say about myself. If I had received my diagnosis as a child I would have thought like: "people have to understand, I have aspergers" but as I didn't know I was more like: "how can everyone be able to do it? I have to try, I can do it too!". What I mean is, instead of thinking of my limits, I thought everyone felt and dealt with what I dealt with and could do it, so why couldn't I? I just had to try harder. I thought they had the same struggles but managed to accomplish things nonetheless. So I could too.
so not receiving it early was highly beneficial, I learned useful skills like faking NT and trying new things. I went through tough times in my teenage years but now I say it was worth it. And I wouldn't be who I am today without it. I do think childhood diagnosis can be limiting.
a random example, school presentations. If I had known I would have thought something like: "I have generalized anxiety and poor communication skills. I am going to stutter and not be able to express myself and cry in front of the class. I am going to be humiliated and everyone will know I am weird. The teacher can't make me do this, I have aspergers. I am not going to do this.". Instead I was like: "everyone gets nervous before presentations, if they do it I can do it too. I have to try". Truth is, everything can be practiced and learned and we can develop skills. I think diagnosis focus too much on what we are poor at or can't do and this can be limiting. My symptoms would be tons worse if I had been diagnosed as a child.
now after my diagnosis I have been tending towards self-limiting and accommodations. I have to keep an eye on my own attitude. If I am talking to someone and say something wrong for instance when I realize it I am like "here we go again. Stupid aspergers. My poor social skills suck I won't ever make any friends" I have to stop it! This is counterproductive.

Last edited by linatet on 24 May 2014, 10:05 am, edited 2 times in total.

well those who could not cope with school would act out and either be kicked out or drop out most likely ending up institutionalized never to be seen again

As I said in another thread. I would have benefited more from getting it at about 18-20 years old. even getting it as a child, It would have not improved my situation in school.

One of the biggest problem of aspergers (at lease for me) is the sensory overload issues. Trying to sit calmly and study in a classroom with other people sitting around you was horribly stressful, I just can't imagine how anyone can concentrate on such an environment.

Another example. I love examples.
my best friend has a 8yo younger brother. He has some issues, at school hits other kids etc. Lots of people are suggesting there is something about him, like ADHD. I know him since he was born and I am confident that it is aspergers (he stims flapping his hands, watches the same movie thousands of times, had cars and planets obsessions, only eats one type of food, can't express himself so when frustrated hit others etc etc).
but his parents don't want to take him to a psychologist. I think it is the right decision. He is healthy and happy, is gradually learning how to socialize, why bother him with a label? He would get too self-conscious about his limitations, about being different from other kids, about having something wrong about him, etc. I totally agree with this decision. Of course there are cases in which early intervention would be better, but I think that in aspergers not classical autism in particular many times it is better not to diagnose early.

Other than the fact that any help I could use now is not available to me because I was not diagnosed as a child, I am glad I was not. Like others said, I had to learn to get by and to succeed and it made me exceptionally resilient. I am a very fascinating combination of super fragile yet super resilient. I was also and am also able to accomplish some pretty impressive things and some from just sheer gut brute desire and will because I had to develop a lot of that just to try to keep up with everybody else. I do have very serious limitations though and I am not ashamed or afraid or out of touch with reality enough to not admit that. So, now, I would like some help with certain things but I know I will never be able to get that help so I will just have to rely on creativity and resourcefulness, two other qualities which I developed from a need to survive undiagnosed in an NT world as well as my ability to persevere and bounce back. Growing up undiagnosed made me a survivor.

I think that a lot of kids today are pampered. I am glad that they are getting social skills and getting help to not have to go through some of the tortures we went through but I don't know that they will develop the kind and level of resilience and perseverance that we did. And I don't remember disruptions and out of control students in the classroom either. There was no tolerance for that when we were in school. And we never had a school shooting, at least not by a student. No one had ever heard of such a thing. No one would even dare sass or talk back to a teacher let alone attack one.

I think it the benefits (or lack thereof) differ on a case by case basis.

To be honest, I'm not certain my son's diagnosis has been helpful for him. It isn't harmful in the ways mentioned in the opening post, however. My son is very mild. It seems plausible that early diagnoses don't overly help mild cases. In my son's case, I refuse to ever let "I have Asperger's" to be an excuse for anything. It can sometimes be an explanation for why some experience seems different, but it is NEVER an excuse to not follow rules.

Now, his diagnosis helped *me* significantly. It allowed me to relax a little and tell myself that I could simultaneously be a good parent and not see the same results as other parents.

I know that all sounds like the conclusion could be: find out, but don't tell the kid. I also disagree with that. So far, I wouldn't have changed anything about his story. I'm simply trying to say I understand how diagnosis of (particularly more mild cases) young children sometimes don't give the help we are led to believe it will.

On a similar note - I was very bummed at his neuropsych evaluation when it seemed that I had a choice over his diagnosis. I didn't hide it. I said, "I want the most accurate diagnosis". It seemed as though she was willing to tweak it any number of ways so he could qualify for whatever services we wanted him to qualify for. I tried to explain he goes to a private school, I know nothing about services for disorders he hasn't been diagnosed with yet, and I chose the extensive testing route to get the most accuracy. This is why I have always considered his Aspergers "mild". The diagnosis ended up being Aspergers and rule/out ADHD. She said her strong opinion that he would not be a candidate for stimulant medication...and I'm pretty sure that's why he did not get a diagnosis of ADHD.

I have since been very unsettled by the bureaucratic nature of the diagnosis/services system (at least where I live).

I *think* that if that system were fixed, and social stigma of ASD were reduced, early diagnoses would be universally helpful. Until then wether or not it is helpful depends on the severity of symptoms, where you live, the number and quality of services available, and the larger community's understanding and acceptance.



I was and am more severe than my son is. I had early diagnoses, but not an ASD one. For the longest time, I was diagnosed with severe ADHD. That masked my language problems until I was diagnosed with non-fluent aphasia. IF, I had a diagnosis of a more severe speech or language issue younger, I might be able to speak better now. However, I'm certain there would have been a trade-off.





To the OP, my father is about your age and I suspect he has Aspergers. He was routinely dragged to the principal's office at school. A cousin of his grew up in a mental institution. Life would have been better for his cousin if he were born later. I'm unsure about my father.

I wasn't diagnosed as a child, and still am not(although I don't think I would be here after almost seven years if I wasn't as certain as I could be without said official diagnosis). I believe that I fall into the category of "twice exceptional".

I think that this idea is wrong. There are so many areas in which I failed to interact not because I didn't want to have success, but because I didn't know that interacting in such ways was expected. And I didn't realize my lack of knowledge because no one around me pointed it out.

I spent the first twelve or so years of my life with people calling me spectacularly gifted and believing that I was a genius. I taught myself to read, and by the time I was done with elementary, I could read and comprehend college-level books and do math in my head. Then I went to middle school, and the school schedule I was given listed all courses I was supposed to attend for each of two semesters. I misread the schedule, and attended the wrong courses for two weeks before anyone realized I was in the wrong courses. At this time most of the teachers required the students to keep binders full of all of the work, and these binders accounted for a significant percentage of the grades. Although I was academically quite capable of doing the work, I didn't understand about keeping these binders, so I did the work, but didn't keep it in binders. I also had organizational skills problems, in that I would do the work, but would forget to bring it back with me to school the next day. Missing my courses for a major part of the grading period, not having my work in binders that could be checked, and forgetting to return my coursework all combined to destroy my grades. I had perfect grades throughout elementary, but my first semester of middle school my grades were all "F" or "D-". I was completely devastated, and along with being bullied by many different people, I became depressed, stopped caring about school, and didn't even attend for most of my next year.

Because they knew that I knew the work(because despite my terrible grades I would still get high grades on tests), they passed me to the next grade regardless of my marks. This happened until high school, where they don't do that.

I failed so many courses in early high school. I still no longer cared, but I was marked as gifted, and was in advanced placement courses. I didn't see them as any more challenging than normal courses. I just saw them as more work. I didn't have any concept of getting college credit for them, why that might be desirable, or the idea that advanced courses might be useful in learning more(like in math). I got terrible grades until my junior year, when someone offered me $100 if I would get all "A"s. I did, both for that semester and for the rest of high school. But I only registered for exactly the courses I needed to graduate, because I had no concept of why to take anything more advanced.

I got a job in high school. I didn't do it because I wanted money; I didn't care about having money. I did it because my mom begged me to. I applied at a McDonald's. And I worked there less than a month. I didn't hate the work. I quit for two reasons: I had horrible sensory issues that were exacerbated by working there(although no one believed me), and the manager scheduled me to work outside of my availability, on the one night a week that I was able to pursue what would now be called a "special interest", the thing which for a time I used to read books about constantly and memorize every detail about, even during school. I didn't even go back to get my second paycheck, because I didn't care about the money.

I also had never driven a car, because I was too scared to. I had no idea that being able to drive a car would be considered an important thing. Instead of learning to drive at 15 or 16, I didn't end up learning until I was 20, but I'm skipping years in this, so I'll go back.

Then I remember my first day of university. I'd never considered going anywhere than the local university. My SAT and ACT scores had gotten me out of the first calculus class, even though I'd never even taken trigonometry. I was supposed to go to be an engineer, but the university required meeting with advisors before registering each semester. The first semester there was an orientation, and the meetings were scheduled. I was behind, because those courses I hadn't known to take were classes that were beyond anything I'd taken, but at the same time, my ACT and SAT scores had gotten me out of courses. That's an awkward position, having gotten out of classes in subjects you'd never had any training in. It was recommended that I take CLEP tests to get out of the courses, but having never encountered them before, I decided to take what I now know were considered remedial in that program(although in general college the courses I was taking wouldn't have been considered remedial). The advisor recommended that I take only 12 credit hours my first semester, and not knowing that 15 or 16 was normal, and having no concept that a college advisor might give bad advice, that's what I did. My mom said that she thought I should take 15 or 16 hours, but I thought that was because of her confidence in my ability to do more than average, and no one, not even she, ever told me that I was taking less than what everyone else was taking.

My first day of university, the only reason that I found out that I needed to buy books and that they wouldn't be provided is because an acquaintance from one of my classes saw me and said something to me and said that he was going to buy his books. I followed him into the university bookstore, where they gave him a printout of the books he needed. I asked for a printout, too, and then went to get my books. But when I went to check out, they told me that my financial aid money wasn't available, that I needed to go to the financial aid office to take care of a problem. I went, and although I went back several times within the next several weeks, each time believing that the problem had been taken care of, they didn't finally make the money available to me until October. Every day I attended school, having ridden the bus for 1.5 hours every day, because of the city's terrible bus service and me never having had a car or any friends with whom I might have been able to get a ride. As a side note, during this time, to aid in my growing depression, the World Trade Center was attacked.

So I'd taken 12 credit hours. I hadn't been able to get the books I hadn't known that I would need, because I hadn't had access to the money that I thought would be available the first day.

At this point, I should mention that I live in a state that offers free college tuition after the first semester to any "residents" who both attended full time and maintained a 2.5 GPA. But because I didn't have books, I couldn't do the work, and had to drop a class, and lost the entire scholarship before ever having access to it.

The second semester was terrible. I needed to meet with an advisor every semester before being able to register, but I was already scared of people, from years of being basically tortured socially, and now I had to meet with an advisor each semester to remove an academic hold, when the previous advisor hadn't helped me at all, and had actually given me terrible advice. I did schedule a meeting, in which I said that I wanted to attend several classes. I included the one class I'd dropped. But by the time I was able to register, none of the classes I'd wanted were available. So I registered for the classes I had access to. I registered for 16 credit hours.

The first day of my second semester, I remember attending classes. I don't remember exactly what happened for the rest of the day, but I do remember that I was scheduled to attend a special class for people in my major. I went to the area of campus where I thought the class was, and looked. I looked so much. This was before this information could be looked up online, and I was too poor to have a computer other than the one that was at home, 1.5 hours away(probably 2.5 round-trip). So I was in an area of campus with few people, I had literally one person I ever talked to outside of class, and she wasn't there and wasn't attending the same types of courses, so I had no idea how to find this class. I broke down and started crying. That day I left the school. I went home, and I stayed at home for most of a year.

After over a year of depression, my mom convinced me to try to get a job so that I could have some money, and I finally got one. Although my ability to interview was terrible, I was offered the job immediately when I told the interviewer that a particular thing was very easy, even though he knew it to be dangerous. It was part of my special interest, and it was very simple to me. I got the job, and I was very good at it. It was a (very-low-wage) tech support job. I was able to fix problems faster than all but one person there, and he'd been doing the job for decades. It was shiftwork, so for the next year, I wasn't able to keep any kind of schedule. And I had to talk to people. I was miserable.

I stayed at the job for about six months, but after six months, I found out that my mom couldn't take me anymore. She convinced me to try to learn to drive, but when I told my employer that I wanted to have a set schedule for two weeks so that I could take driving school so that I could learn to drive so that I could continue to be able to get to work, they declined my request. So I put in my resignation. Even though I'd only worked there for six months, after I left, there were only three people from my training class who still worked there.

I attended driving school, and I did learn to drive. At this time, my mom told me about the local community college, and told me that my dad had attended there. So I enrolled there. I wasn't required to meet with any advisors. I registered and took care of everything necessary to graduate. I did extremely well. In many cases, my instructors would ask me questions because I knew more about the respective subjects than they did. I even had an instructor redesign a project around the way I'd done my project, because he said that no one had ever done the project in the particular way I had, and he preferred the way I'd done it, and would change the assignment to have everyone do theirs like mine for future classes. I did extremely well at this school.

A few days before I graduated, my mom asked me if I was making a lot of connections and getting references. I hadn't known that other people did that, so no, I hadn't. I attended school for years, not knowing that it was expected that I would form any kind of connection with anyone, or the purpose of references.

After I graduated, I tried to get a job, but I didn't know how to write a résumé. Even though I'd been an exceptionally good student and had multiple instructors who knew that I knew the subjects better than anyone else in the classes, I had no references from any instructor. In the few instances when I did get an interview, my interviews were so bad and lacking so much. I remember one interview I had in which I basically admitted to having no friends. I remember another in which I told them that the reason I wanted a job was to get money. Yes, I answered questions literally and with no concept of their motivation behind the questions.

So I became very depressed again. I couldn't figure out how to get a job. I filed the paperwork and started a business. I did computer repair, and for a few years, I even made enough money to live. I was good enough that I could solve basically 100% of problems. I even handled large projects by myself, like the installation of a hundred computers and network equipment, and migrating organizations to different kinds of computers. Then one time a customer was dissatisfied, and she said all kinds of horrible things to me, and a few weeks later it happened again. I became depressed again, and stopped working. Officially my business was still legally running, but I couldn't handle dealing with people. I quit working.

Most days I sat at home reading the internet all day. During this time I taught myself lots of programming languages and web design. I never cared about actually using them for anything. I was just very good at learning how they worked, and got enjoyment from coding. I think now that that sounds bizarre, because it's kind of like being the world's best artist but not caring about actually creating the art, as long as you know how the design of art works.

One day, I had the realization that I'd never met anyone like me, and I started looking up things that made me different. I didn't know that social problems could be an aspect of it, but I knew that, for instance, I had always had very weird and very extreme sensory issues that had kept me from eating different kinds of food or touching certain things. So I didn't search the internet for social problems or difficulties. I searched for other people who had sensory issues.

When I found WrongPlanet, I was shocked. I read so many posts from people describing similar experiences to me and giving similar responses to things like I would.

It is because I learned about the autism spectrum that I decided that I was going to learn how to get a real job. I realized that I had much more significant and much more obvious social deficits than I had perceived, so I spent the next year obsessed with learning about how to get a job. I learned how to make the best résumés, how to word things on résumés, brevity, to include particular skills that could be useful to employers, to include all kinds of other information that I hadn't thought might be useful, et cetera. I also watched so many videos on YouTube, to learn about body language, because I had basically no concept of the importance of it or of all of the details. I learned about what employers are looking for and how to consider their questions, to answer truthfully but in ways that try to show things that might benefit the employer, and I became good enough at creating résumés and handling interviews that I actually got a real job paying a livable wage. I was able to get a job that I really liked for most of the time that I had it. And I left there confident that I could get another job(which I don't have yet, but which I will).

At my job, interestingly enough, I later met a teacher whose son had just been diagnosed with AS, and although I never mentioned AS to her she said that I had a lot in common with her son. One day, another teacher told me directly "You have Asperger's," and another told me that she thought that I had always seemed autistic. I never made the statement to any of them that I think I'm autistic; they told me that they thought I was. But my co-workers were generally fond of me, even though I was different.

If I hadn't learned about AS, I am convinced that I would still have not been able to find out how to get a job. I think back and I wonder how having such knowledge might have given me the supports I needed, to give me the knowledge I needed in so many instances in my life in which not only was I clueless but was clueless that I was clueless. I really don't think that having an AS diagnosis would have "ruined my life", as I saw someone put it recently. I think that it would have helped me immensely.

I don't think the diagnosis ruins someone's lives, but I can understand how in certain circumstances the perception that others may give someone who has the diagnosis might be a hinderance. I do still wish that I was diagnosed as a child(and I think if I'd been born ten years later I would have been), and although I have other more expensive health problems I need to take care of, when I have enough money I will pursue it. If I ever had a child, and if I suspected that they were autistic, I would get them evaluated. If they were diagnosed, I wouldn't see that as saying that they were incapable, but exactly the opposite, that they could get the help they needed to succeed.

Yeah, it's not like people weren't as impaired in the good old days because they weren't allowed to be , they just didn't have support and help so they disappeared into institutions or became homeless or some such ignominious fate.

A modern world has changed things allot, especially when it comes down to what people can expect of AS and what they think but it has advantages and disadvantages. I was diagnosed as a child and did not really understand what AS meant till I was like maybe 10 but It has made me limit myself (working on that) and it has made others view me differently based on the label before actually looking at the REAL me because after all this is just who I am as a person right? I'v spent too long looking at the stigmas of AS and applying them on myself basically limiting myself and that's the problem with diagnoses Iv only now realised yes its good to know as it helps but at the sometime that me and I can still do anything I want my AS dose not limit me and I can learn to do anything and be social because I am social and very good at it, Im just a bit emotional and have anxiety and Im not exactly hip or up with the latest trends either but that should not stop me.

I think AS should be transformed, yes sadly serve AS is a disability as it can have some major impact's, but in general AS should not be seen as disabled at all just a different way of thinking and people should be either NT or AS which after all we are all human just we have different personality and that's what should be accepted, we are who we are! I would 100% advocate for Nero-diversity and believe that is the only true way, in the end we just need to accept AS and NT's that we are Humans thus end of the day all the same but we are individuals with likes, interests and behaviours however AS still need help as do also NT's. Only if this is done can we achieve true equality until then why I think diagnoses is important, it is also important to not make a massive deal out of it and to try just be you and get on best you can, don't make the mistake iv done and let it affect you so bad you limit yourself as I at 17 being diagnosed since I was 4 am only now trying to fight all this I'v built up in my head about me and my AS because I have to ability to do anything I want and know this, Yes it maybe more difficult in areas but I can do everything an NT person can If I want.

In my childhood and teen years were bad. Thrown out of public school after 2nd grade, after 2 years in private school. Back to public school. I hated Jr High School and high school and first two years of college. There was bullying, I was a C student which was much lower then my potential. The period between Junior Year in college and my early 30's were my boom years. Computer programmer , Into New Wave music I did have an identity and knew others were like me. Sometimes I think the good times would have not happened had I known in the earlier bad times for the reasons listed above. At other times I know the bad times left scares and despite things going well in my 20's looking back there were a few things obviously Autistic going on. I just don't know the answer to the question.

Having made it to my 20's there was no need for a diagnosis then. When I was slowly sliding in my 30s and 40's a diagnosis could have helped me not stay in a bad and deteriorating job situations that might have prevented the crash in my 50's. Being younger I might have been able to cope and enjoy the good parts of Aspergers then I can now.

But alas, that is all hypothetical. I am very worried about my elderly years for a number of reasons and because there just is not much help and probably won't be. But unlike generations before me, at least I will spend the later part of my life knowing who I am and I am very happy about that.

In my case, it benefitted the teachers, who had an excuse to treat me like crap and not teach me anything useful. And they also made me develop ODD because of that. Just to make my social problems worse, y'know.
Note: I am talking about my ADD diagnosis; I wasn't diagnosed with Asperger's during childhood, but it's the sane because my problems were the same, no matter the label.

I don't know if being labeled with a diagnosis is a good or bad thing for the high-functioning autistic.

However, knowing you have AS/Autism is always a GOOD thing because you are empowered with knowledge, and you can make better decisions than someone who has AS/Autism and doesn't know how it affects them.

I agree. But that is an argument against childhood diagnosis. Childhood is largely concerned with learning the rules of society, and children continually 'test the water' to find out what they are allowed to do, and what is off-limits. It is the responsibility of adults to lay down the lines, and to teach children not to cross them.

But the whole point about Autism is that people with ASD don't automatically conform to society's rules - they need to be convinced that there is a good reason for a rule to be in force, and if they are not convinced, then they will see no reason to comply.

If you tell a child that it is autistic, then it will very quickly learn that it is exempt from the normal rules of society, and will immediately begin to take advantage of its privileged position.

But if you tell an adult that it is autistic, it will probably say 'this makes sense, tell me more, what can I do about it?'

Being autistic is not about being a rebel. Being autistic is not about making a conscious decision to not conform to cultural norms.

Being autistic involves not being able to intuitively identify what those cultural norms are, and it's very dangerous and detrimental for a person to simultaneously be unable to act like everyone else and to not know that they're unable to act like everyone else.

Having a belief that a lack of diagnosis will make a child better able to fit in is just incorrect. It's like saying that not knowing you're naked will prevent people from pointing it out.

...I have often wondered what my life would have been like had I been early-DX'd .
Perhpps I wouldn't be so crusty/" LEAVE ME ALONE ! !! !! !! !! !! " , desperately trying to just stay above water , as some of the traumas in my life have led me to be ~ my position , well ...........