Anyone else feel angry for not getting an early diagnosis?

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ASPartOfMe
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27 Mar 2021, 10:46 am

Welcome to WrongPlanet Diamondgirl and Peter.

Yes back in the day the "It will sort itself out", and "you will grow out of it" were how most people thought. Sometimes it did work itself out and other times it never did.

The difference between channeling anger for useful purposes and letting it consume and destroy you is a fine line and tough to figure out.

The people that raised us were literally ignorant about autism there is nothing we can do about it now.

It has taken all this time to get our diagnosis, living our life based on wrong assumptions of who we are. We can not expect to figure out what it all means quickly. My advice is to let your autistic brain figure it out the way it needs to figure it out.


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29 Mar 2021, 2:05 am

I feel angry in a sense. It would have been great for me, my parents, and teachers to know about how my brain worked when I was younger. It would have saved us a lot of anger, irritation, and sadness. On the other hand if I was diagnosed earlier (as in childhood) I would have probably been sent to ABA therapy and put on drugs for my hyperactivity and inattentiveness. This could be potentially more damaging to my mental health than what I already endured.

Although it has been rough being diagnosed later, I feel I can approach autism and ADHD in my own way. I am also growing a lot and learning a lot about myself.



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29 Mar 2021, 3:48 am

I got a form of unofficial ABA therapy all the way through - in that I was routinely punished, ridiculed, nagged at and outright bullied every time I exhibited behaviours that did not fit social norms. Parents, siblings, teachers, peers - they all got in on it.

Why are you fidgeting? Do you need to go to the toilet? No? Well stop that!
That's rude, you can't say/do that.
You're weird/strange/crazy.
If you keep acting like that, the men in white coats will come and take you away.
That's not appropriate.
Be quiet. Keep your voice down.
Why can't you apply the intelligence we see in that subject to this subject?
Why can't you just be normal?
What do you mean you don't know you're doing it? Of course you do. You're doing it deliberately. You're ****ing doing it again!

It pretty much made my life hell on Earth. Bad enough they were doing this off their own bats without having some pseudo-scientific quack "Behavioural Psychologist" giving them permission.

Even recently, when we were at a funeral at the end of last year, I have no idea what I was doing but my eldest sister suddenly snatched the program out of my hands - like she's done with numerous other things all my life. Later, after I got it back, I became aware that I was tapping the program against my leg and stopped doing it, put it down and substituted a quieter form of stimming - so I suspect I may have been tapping the paper against something earlier, prompting my sister's reaction.

Seriously, it was like being a kid again. Thanks for the flash-back, sis!

Just because you don't get an official diagnosis and "scientifically-calculated abuse ABA therapy", it doesn't mean they don't do it to you anyway.

Of course, it achieved their desired result - I learned to mask to spare myself the abuse and beatings. So a "win" for ABA, I guess? And a win for low self-esteem, self-harming and suicidal ideation as well.

Thankfully, I managed to navigate the whole thing and come out the other side fairly well - the self-loathing, self-harm etc are decades in the past - despite the fact that the numerous counsellors and psychologists I went to had absolutely no idea what they were dealing with.


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29 Mar 2021, 2:32 pm

Oddly enough can identify with much of the above post . From growing up . Emphasis on beatings and psyche abuse.
Right up to time of diagnosis , was consistently dealt with mental health , so called professionals and their own personal versions of abuse . Had no clue as to proper diagnosis .


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29 Mar 2021, 7:05 pm

I definitely relate a lot to this. My parents even admitted they used ABA like tactics on me. I do face a lot of trauma because of it. However, I still feel there are cons to being diagnosed earlier. I actually heard of people who were diagnosed with autism as children who wish they could have been diagnosed later to avoid ABA and the drugs doctors put them on. When you're a kid you don't get much say in how you want to proceed with your diagnosis.

I'm not saying my life is perfect now either. But, I'm learning to leave the past in the past and move forward with the information I know about myself now.

Wolf1066 wrote:
I
Why are you fidgeting? Do you need to go to the toilet? No? Well stop that!
That's rude, you can't say/do that.
You're weird/strange/crazy.
If you keep acting like that, the men in white coats will come and take you away.
That's not appropriate.
Be quiet. Keep your voice down.
Why can't you apply the intelligence we see in that subject to this subject?
Why can't you just be normal?
.



kraftiekortie
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29 Mar 2021, 7:08 pm

I was diagnosed very early----in the mid-1960s.

My mother used to use ABA-type methods on me----and they left their mark.

She did "see something in me," though.....so she refused to put me in an institution. That what the psychologist at the time recommended.



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30 Mar 2021, 7:34 am

At least you were not institutionalized .....sorry about other issues , what does ABA. Stand for ?


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kraftiekortie
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30 Mar 2021, 8:00 am

Applied Behavioral Analysis.

It emphasizes, to a considerable extent, the elimination of autistic symptoms, and the encouragement of "normal" behaviors.



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30 Mar 2021, 11:53 am

Okay thank you kraftie , that sort of thing was practiced through rather violent version of discipline administered
By the parents until in became untenable for them to keep up with some of Behaviours as times when was alone
They could not watch all the time . Just had to be careful , it had become almost second nature to mask.


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30 Mar 2021, 1:04 pm

Psychologist 1: I've got a brilliant idea: we'll just tell people to force their autistic kids not to do certain behaviours.
Psychologist 2: The parents worked that out for themselves, they're already doing that.
Psychologist 1: Yeah but the difference is, we'll give it a fancy name.
Psychologist 2: It's already got a name: "child abuse".
Psychologist 1: Well, we're going to have to come up with something a lot more marketable than that.
- the birth of "ABA"... I suspect.


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30 Mar 2021, 4:50 pm

Truley a sad day when ABA came into existence . Have seen strongest available tranquilizers used to work as medicinal medicinal restraints . Used on Autistic children whom were almost completely non- verbal .
That was a crime but the parents were not advised about the drugs given to their daughter .
Those days retardation and autism where categorized as the same topic .


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30 Mar 2021, 5:31 pm

rache123 wrote:
I feel like if I was diagnosed before the age of 12 or 13, that I probably would have been able to have had healthier coping mechanisms at a younger age. With all the OCD-like thoughts and anxiety and sensory issues and feeling misunderstood, I always felt like a black sheep. I’m sure many others of you can relate; especially those of us born in the 90’s (where medical health professionals were just beginning to truly understand how autism works) and earlier. With the constant misdiagnoses and lack of communication that seems to play a part with those of us on the spectrum, it makes it even harder.

I always knew there was something wrong with me but I could never figure out what it was, until I was told about the disabilities I had when I became a teenager.

Then there’s the fact that my mother and my father had to make so many sacrifices in order to put me in an overpriced school to help me with my learning issues, which didn’t really do much btw, but that’s another issue I don’t want to talk about.

I was in no way miserable, maybe mildly depressed but not to the extreme until I went to middle school and everything went downhill. It makes me wonder if my life would have changed if I was made aware of my disorder at an earlier stage in my life.

No i am not angry about not getting a early diagnosis.



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30 Mar 2021, 5:44 pm

If I wasn't diagnosed when I was 8, I probably wouldn't have received the help and support I had through school, as the school only funds extra support for those with a diagnosis of some sort. So if I hadn't got the diagnosis and didn't receive the support I got, I probably would have fallen right behind on my work and probably would have received a lot of detentions and other punishments. But then again, if I wasn't diagnosed with Asperger's I most probably would have been diagnosed with ADHD, which I have definitely got.
But having a diagnosis at such a young age didn't help my social life. I think I'd rather have suffered misunderstanding from teachers than misunderstanding from my peers. So many female Aspies go through school life undiagnosed and seem to slip through the cracks in a social context, and just come across as shy or aloof. But me, I was seen as the weird kid, the dumb kid and the mental kid. It's because one girl knew I had Asperger's because my mum was good friends with her mum, so this girl went and told everybody, which then caused kids to think that hanging out with me would be seen as an embarrassment. So I became socially isolated, which didn't help my social skills much as I reached my teenage years. I think that being socially accepted when you're a child helps develop your social maturity as you reach your teens, whether you're on the spectrum or not. I was very socially accepted before I got diagnosed.
Then as soon as I got diagnosed, I began feeling depressed and thinking I wasn't normal and at the time I thought I was the only person in the whole world with Asperger's.


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31 Mar 2021, 1:13 am

I think it would've been better if my son (ADHD, ODD, AS) had been diagnosed when he was younger - instead of at age 14. It might have enabled us to get more learning assistance or at least have "armed" us against the schools that just wrote him off as "a troublemaker".

Thankfully, no ABA type crap was suggested by the Child & Adolescent Mental Health Service - though they did put him on Ritalin for his ADHD.

Fortunately we found a school (after he had been kicked out of his previous school) that had better teacher-student ratios and a willingness to actually spend the time to help students that don't cope well with the school environment/teaching style.


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27 May 2021, 8:02 pm

I don't technically have a diagnosis, but i do wish I had known a long time ago what was going on with me. It would have saved at least some major anguish. It got so bad as a teenager that i didnt want to be here anymore, i was just getting desperate for the misery of it to stop, without even knowing what was wrong. No one listened or cared either, and its tough to begin to get help when you dont even know what is wrong, but there were definite signs from a young age. Sadly being female in the mid 80s as a small child didnt make anyone suspect autism. The first person in my life who did care and listen was my husband. I really think he helped save my life. I still struggle but its not as bad as it was back then, and now knowing why does help some. I would have made some different choices with the knowledge that i finally have now. I feel a lot for you all who have also suffered so much due to this and not getting help earlier.



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27 May 2021, 8:10 pm

thank you for your sentiments ..... Sorry you had to go through what you had to..
Can totally relate to what you have written. .


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