[losthawk]

Incoming rant. I dont even know how to react to what I found out yesterday...

There was this program on TV in UK a few weeks back called ‘The A Word’ I didn’t watch it, but from what I gathered from parents It’s about a kid named joe with autism.

My dad after he watched episode 1 then started joking that I was like Joe with my headphones always on my ears unless I’m asleep (jokes on him I sleep with my ear buds in too) and comparing a lot of what I do to how Joe acts in the show… I kept telling my parents I wasn't autistic however, cause I’m 18 wouldn’t it have been spotted by now?

So I said “fine ill take a test if it gets everyone off my back about it!” (it was getting increasingly irritating after the 3rd time I had “joe. Its joe!” said to me when I’m trying to make my lunch in peace. So I found the autistic test on PC (I know they don’t substitute for a doctor but I was just using it to get them off my back) and it came out with a very high score… oh damn.

Not to mention, that apparently centering my life around marvel comics isnt normal? everything ive liked in life, has been obsessive, i just have always put this down to being passionate and loving to learn about things... apparently im so far from passion on things its creepy...

So they didn’t lay off, but I’ve been looking for a job recently, went to interviews and I then didn’t take them when offered because they sounded really boring to me, I want to do volunteering but cant because I live far away cant afford the petrol without a job. Parents been on my back about a job for months now, but mums layed off since I did the online test, I wasn’t complaining, I wasn’t getting yelled at for not trying to find a job when I was trying very hard (now sent out over 100 emails looking for jobs!)

So when I was younger about 5 or 6 apparently (I'm going off what my sister has been told by parents and what she remembers as i dont remember this part of my life as i blocked it out due to bullying...) my parents got me tested for Autism and the test came back as a "most likely has autism further testing needed to establish where on spectrum".

They got me tested because of my routine, I had to be the one to shut the door, I had to be the last to leave the room, Everyone had to say good bye to me before they left otherwise id think I was being abandoned, got incredibly worked up if things weren’t done in order among other things, all caused my teacher at school (I say teacher I mean more my tutor because I didn’t go to normal lessons I had 1 on 1 tutoring mostly at a public junior school because I couldn’t cope in the classes, I didn’t like anyone in there I would start fights apparently, and I got really restless and when group discussions happened or more than 1 person was trying to answer a question out loud, I got really agitated and would lash out. When I got to Senior school (so high school for Americans) I was in classes with everyone, the 1 on 1 didn’t pass over as it was a new school, it was put down to bullying why I wasn’t in classes with other people in junior school, I was just put in classes that didn’t have anyone from my junior school in them. So I just went through that school thinking I was just in a bad mood permentantly, I got a bit better at people talking aloud but when more than 2 had a discussion out loud I would get really annoyed and id draw or something to try shut them out, once I got my ipod I had my headphones in 1 ear constantly (perks of long hair I could hide the wire easily) and that helped as long as no one noticed (why I liked my exams so much, it was dead silence).

We then moved once I finished that school never started college, probs a good thing as my interests changed extremely from wanting to be a horse trainer (what I was going to do at college was equine management) to now psychology, criminology, and helping everyone is my current interests.
Now I have NEVER been told this? My parents told me a few weeks ago “we didn’t get you tested when you were younger because we didn’t want you growing up with that kind of label” It has really pissed me off that this was hidden from me for 12 or so years. I don’t care about label’s I like to have labels to describe me, The second I realised that my sexual orientation was referred to as lesbian, I was over the moon, I didn’t feel odd anymore I could describe it.

They haven’t come forward and mentioned hiding diagnosis from me, but my friend was here the other week and my dad said “well you have Asperger’s anyway so that explains it” I have no clue how me making pizza at 11am related to that? Me and Aspie has never been mentioned in same sentence by me. But I don’t know how to actually react to finding this out? They told my sister about it before me? The person it concerns, they rang her up and were having a conversation about me and autism the other day, she told my sister that she (my mum) was laying off me getting a job for a bit because of autism??? I’m so confused right now….

I don’t remember ever getting tested, I do remember going to the doctors a few times as a kid for things I don’t remember why I went, where I was asked questions but I never remember what happened at them, I just remember being in that waiting room a lot. And why would they hide this from me anyway? It isn’t a bad thing right?

TLDR: Parents hid autism diagnosis from me! Im pissed. Not sure how to react.

[Talthybius]

There is no such thing as an online test for autism.

Your parents didn't get you diagnosed as they had to make that decision for you.

You don't have a diagnosis.


I was tested. My parents don't even remember the result. I think it said I have mild ADD. I went to a psychologist recently and she said I have streaks of autism, indicating I may be very high functional somewhere on the autism scale.

It doesn't mean anything. I wouldn't tell my child she/he had autism. Autism is an insult. What does a child know? All they learn is that they have a label that's an insult and that they are inside a box where they are supposed to act awkward, not social, etc. Sure, it may help some. But if I had to make the judgment, I would make the same as your parents did.
Maybe at age 18 or something tell the child about their testing history.

[losthawk]

Originally Posted by Talthybius

There is no such thing as an online test for autism.

Your parents didn't get you diagnosed as they had to make that decision for you.

You don't have a diagnosis.


I was tested. My parents don't even remember the result. I think it said I have mild ADD. I went to a psychologist recently and she said I have streaks of autism, indicating I may be very high functional somewhere on the autism scale.

It doesn't mean anything. I wouldn't tell my child she/he had autism. Autism is an insult. What does a child know? All they learn is that they have a label that's an insult and that they are inside a box where they are supposed to act awkward, not social, etc. Sure, it may help some. But if I had to make the judgment, I would make the same as your parents did.
Maybe at age 18 or something tell the child about their testing history.

Except that did get me tested apparently??

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[Talthybius]

Well, I am just going with what you are telling us.
You said you were 'tested', evaluated, but not diagnosed.

If you want a diagnosis, you can arrange for one yourself.

That they are joking about you&autism, talking about you as you have autism, going around your back because they feel they need to 'protect you' because you have autism, that is all wrong on their part.

If they can't tell it is wrong, tell them.
If they don't care it is wrong, I don't know.

[RichardBrooks]

Many people with Asperger's/ HFA don't have a formal diagnosis. I wasn't diagnosed until I was in my 30's because they didn't test for it when I was growing up. Also, a lot of aspie behavior is just written off as being quirky, shy, or attributed to some other diagnosis like OCD or ADHD. A lifetime of misdiagnosis is not uncommon.

I understand your anger and frustration at finding out about this test from your childhood and that you weren't told. I too was rather upset at finding out I was on the spectrum in adulthood, even though it wasn't something anyone knew about when I was young. I still think about how different my life could have been with access to treatment option, therapy, proper coping mechanisms. On the other hand, I've seen CBT and ABA for the bulls**t they are, and am glad I dodged those bullets in my early years.

The thing is, if you are on the spectrum, diagnosis or not, you can start learning about it and how to manage your anxiety and stimulation levels now that you have the information you do. I found it extremely liberating finally knowing why I had never fit it and never understood people all my life, and also knowing that it's okay to stim; it's okay to need my downtime; it's okay to get frustrated with dealing with people all day, and it's okay to be me.

You can't change the past, but you can work on having a better present and future.

[Talthybius]

But how can you have Aspergers or autism if you don't have the diagnosis? Because that's all what it is; a diagnosis.

It is not a disease, a cause, a genotype, a personality type, a neurological pattern. It is just something made up by humans. A label of people with similar problems that may benefit from similar treatment.

[Anonymous37919]

You should try to get a proper diagnosis by the mental health board. I know, not all of them are good.

I've been diagnosed with PDD-NOS just because they were uncertain as to what I have. We deserve to know.

[ToeJam]

Have had a late life diagnosis this year with the ball set rolling towards it two years back. My dad had already passed away by then but when I went for the initial testing, my mum was asked to come along to fill in the blanks of my childhood that I wouldn't remember.

Transpired that I had been referred to ed-psychs while in nursery, primary and middle school... but it never got followed up as we moved house a lot and my dad being the more vocal of the two refused to acknowledge that I was anything but normal.

Has been a double edged sword... on the one hand I think it actually did me some good not having the diagnosis as a child... kept me out of special school (which had been on the cards several times) and I eventually went to University and got my degree. I had to essentially condition myself to act (and it was acting in hindsight) as normal as possible... learning the hard way, how to behave 'appropriately' and filter what I said before I said it.

On the negative side, I have dealt with depression and anxiety most of my life (and gone through 4 inpatient visits) with frequent overwhelm/shut down episodes. I 'suspected' that there was something more than just the depression and anxiety at work... but I would never have guessed I had an ASD.

My mum went through a lot of guilt when it was determined that I had the disorder as I guess she ascertained that a lot of grief would have been spared had it been investigated properly before... but I don't hold either of them accountable... just one of those things and I can appreciate that no parent would want their child to have something wrong with them.

Originally Posted by Talthybius

But how can you have Aspergers or autism if you don't have the diagnosis? Because that's all what it is; a diagnosis.

It is not a disease, a cause, a genotype, a personality type, a neurological pattern. It is just something made up by humans. A label of people with similar problems that may benefit from similar treatment.

Out of curiosity, what research are you basing that assertion on? I am new to the diagnosis, but from my limited understanding, there are neurological differences between those who are neurotypical and those with autism/aspergers.

[Talthybius]

Originally Posted by ToeJam

Out of curiosity, what research are you basing that assertion on? I am new to the diagnosis, but from my limited understanding, there are neurological differences between those who are neurotypical and those with autism/aspergers.

Let's keep in mind where the burden of proof lies.

Diagnoses existed before we had MRI or CT scans. MRI or CT scans.aren't where the idea of autism comes from. Behavior, not brain structure, is evaluated.

Until we diagnose autism by MRI/CT scans rather than behavior patterns, I don't think it's even worth debating this issue.

It's nice that AFTER a diagnosis has been made, in some cases patterns can be found CT/MRI-wise. But that's an afterthought/side effect