Anybody else struggle to accept their diagnosis?

Post Reply New Topic

Well, yeah I have a few friends but each of my friends don't know each other and I'd say most of them aren't NTs. I don't seem very good at making friends with NT women of my age. They tend to 'ghost' me. Maybe it's because younger NTs are more shallow and prefer to be friends with those who wear lots of make-up and like going out and getting drunk. Not being a drinker has isolated me socially, which goes to show what a sad culture I live in. Other non-drinkers like myself seem to be hard to find. I've mostly met the friends I've got at previous volunteer jobs.
Finding dates with NT men has always been easier than finding friendships with NT women. True story.
And as for jobs - I was unemployed for the first 6 years of my adult life, until I got a cleaning job at a nursing home which I got stressed at and it wasn't what I wanted, but then left for the job I have now. But if it wasn't for my boyfriend I wouldn't be in this job.

So I've had some struggles along the way. Maybe I'm more high-functioning than what I think I am.

My diagnosis came late in my adulthood. At first I simply dismissed the diagnosis and the therapists altogether, as if the professionals were trying to push me some BS. "That's an absolute stretch", I thought to myself.

As time went by though, the diagnosis made more and more sense.

If I'm still struggling to accept it? I don't know. To say I like the fact would be a lie. Sometimes I feel like I've totally accepted it. Other times, I think I am kicking against it.

Do I wish I were "normal"? I don't know. Can anyone safely assure that being a neurotypical is so much better than this? Because for some time, judging the world from what I saw of "normal people", I thought that I was the sane one, not them.

It could also be due to how badly my mother took it at the time. I'm NOT blaming her, because she still loved me the same but I knew that she wanted me to be 'normal' and not be 'the child with the label'. And I know she fears abnormality because she had an abusive father when growing up. Obviously I am not the same as her father of course, but my Asperger's and ADHD invited lots of unique problems that other parents she knew didn't have to deal with their NT children. I had emotional and behavioural problems which made me a difficult child to bring up, and often my mum would yell, "why can't you be normal??! !" I think my mum's idea of 'normal' is a child who has lots of friends, joins clubs, plays sport and behaves well. So she felt like having a child with Asperger's brought abnormality and grief, which it did. Also my mum had a habit of comparing her kids with other kids, and obviously all of her nieces and nephews weren't on the spectrum or had any other developmental disabilities and just brought their parents the 'typical problems' (I'm not saying NT children are perfect, I'm just saying that none of my cousins had challenging behaviour).

I used to do. A lot.

I was diagnosed around age 7. Which I have no recollection of for some reason apart from being at a psychiatrists office once because I got a pretty stone afterwards as one of those good-job-things children get after appointments, and my mom and I got lost on our way home, but I didn't know why I was there, and apparently I didn't ask my parents. I knew something was "wrong" with me. I didn't knew about different disorders or that diagnoses existed. Plus my parents obviously didn't inform me about it so I didn't want to bother them with questions. I had a lot of shame about being me, being different.

My parents never told me that I got diagnosed with autism. I found out myself at 15 by "accident". I had been suffering from deliberating anxiety for over a year and was begging my parents for therapy. I sensed something was up, and so one night I looked for the document, and saw "(my name) is autistic". I was shocked. I nearly threw up. I hurried back to bed and watched youtube to calm down and distract myself. I couldn't believe I was autistic. I couldn't believe my parents had hid it from me. I was already suffering from an identity crisis and poor self-esteem, and this was a big thing for me to take in. I never would have thought I was autistic, and I couldn't relate to most of the information I could find online or the people I'd known who were autistic. Apparently, I had a fair share of internalized ableism. Or well, it wasn't directed towards others at all. I just struggled to understand and accept that I am autistic. I was terrified about other people finding out and what their reactions would be. I started to wonder whether or not it was obvious to others. I started to feel like I was hiding a big and important secret from people because I chose to not tell friends or classmates. My sister didn't even know yet.

My parents eventually found out that I knew and I understood why they'd chosen to hide it from me. It felt obvious to me that they were very judgemental towards autism. They told me that they didn't tell me because they didn't want to "ruin anything for me". My mom still to this day (5 years later) refuses to see anything wrong with their decision and apologize for it. So yeah, it's pretty hard to accept yourself when your parents don't. My whole life, I'd felt like my mom didn't accept me fully. I felt so betrayed and I'll never forgive my parents for what they did. I struggled so much as a kid, and I never developed any self-esteem, because I blamed myself for being the way I was. I thought I was insufficient, weak, dumb, etc.

I'll say I have fully accepted that I am in fact autistic now. It started to happen around 18-19, and I'm 20 years old now. It helped me loads to develop the courage to be open about my diagnosis. I chose to tell a close friend and his reaction was such a relief. Of course there will always be ignorant people, but I've found that to most people it isn't a big deal at all. I've only gotten neutral or positive reactions so far. I also think that growing up and maturing a bit has helped, because I sort of developed the ability to view myself more objectively. Oh, and leaving high school, oh my gosh! School was bad for how I viewed myself because I kept comparing myself to others, and experienced being excluded and ignored quite a lot. I've also gotten to know more people on the spectrum since, and experienced how very different we all are, despite having the same "thing". That freed me as well because I came to realise there wasn't a certain way I "should" be or "had" to be autistic.

I want to say that I don't always LIKE being autistic. I actually hate it sometimes. I hate the struggles that I have because of it. But I don't hate or even mind BEING autistic. Autism is also not my whole identity. Obviously it influences my personality to a fair extent, but I believe that every autistic person has a personality "outside" of their autism. It's just how my brain is wired.

My parents weren't ashamed of me for being autistic, because my mum told everyone. But I could tell that she was unhappy about me having a mental disability, so I've always felt unhappy about having a mental disability too.

I don't exactly remember being diagnosed either. I remember attending these appointments with my parents, but before I was labelled I just thought that these appointments were something that most kids have to attend. It wasn't until my mum told me that I have this Asperger's that was when I felt different to my classmates because of knowing that I had something they didn't. Before I received this label, I didn't really feel that different to my classmates. I felt like I was 'naughtier' than the other children, but not different.

I can understand how hard it must be for parents to decide if it's best to tell their child about their diagnosis or not. My mum thought it was best I knew straight away, but obviously it didn't work with me. I became angry about having it, and if my mum said the A-word in front of me to anyone, I would hit her (not violently). I remember I hit my uncle once when I was about 9 or 10 because he said that word, even though he wasn't talking about me. Both of his young children saw and it surprised them. I didn't hurt him, and I didn't get into trouble for it. It was just my way of reacting whenever the word was said.
Personally I rather I was told about the label when I was at least in my mid-teens, with the explanation that I wasn't told straight away because it might have been too much for me to handle as a young child. As an 8-year-old I didn't think, "oh that explains all of my challenging behaviours and difficulties". I just saw it as a label that was useless to me at the time and made me feel singled out from my peers. I even thought that the teachers saw me as my label and not as me.

There's so much I can tell about my deepest thoughts and feelings about it all, but this post would just go on and on and probably no-one will have the time to read it.

Most of the time, Aspergers would not be considered a "mental disability." Because most people with Aspergers have at least "normal" intelligence.

It is more a "developmental disorder."

I would be more accepting of my autism diagnosis if there was a specific test for it like a brain scan or blood test. Something that told me for sure yes I have it or no I don't.

I don't believe this will ever happen----because autism has so many causes.

I believe it might be more a "syndrome" than a singular "disorder."

Yes. Even after 6 years. I was diagnosed by a specialist called Dr O'shea. He had a load of letters after his name but still, I struggle to this day to use the word Autism(Asperger's is my official diagnosis as it was still a diagnosis in the UK back then).

But then I struggle daily with overload. I have had to learn coping skills and take medication to help me cope with my severe sensory issues that became worse when I hit my 40s.

I have meltdowns sometimes in public which is embarrassing. I have to carry earplugs and often have to leave places and return home or escape to a quiet bathroom. And my tendency to get stuck in rigid routines and obsessions can be very detrimental to my welfare.

I also cannot multitask which is annoying as I will put on a documentary and start reading stuff on my phone and find I absorb nothing of the documentary and have to keep rewinding it.

My phone has become far too detrimental to me as I have an obsession with reading the news and comments and checking my Facebook responses.

But still, I doubt.

It is a disorder because it comes under autism spectrum disorders.

I am very high-functioning though, which is why I hate that most disagree with functioning labels. Taking functioning labels out of the autism criteria is more confusing to me because it makes no even more unsure of who I am. I identify as high-functioning as an adult, even though I don't feel happy about being on the spectrum at all.

What does high functioning actually mean as apposed to low functioning ? Is it how fast ones brain works?

Well, in short it's how close to NT you are, but that's probably an inaccurate explanation these days.

It’s how we adjust to the wider world, sometimes, despite our “symptoms.”

It’s a disorder...but it might be more than that.

It might be multiple disorders. Because there’s so many causes.

There might be “autisms,” rather than one “autism.”

Last edited by kraftiekortie on 05 Nov 2019, 7:38 am, edited 1 time in total.

So the higher functioning that we are, the closest to being an NT we are.

Not always. But somewhat frequently.

You can have an autistic physics professor making lots of money...as compared with an NT janitor.

This sort of thing is not very rare at all.

You can fix things, maybe, while an NT might not be able to fix these things.

Both the physics professor and the Mr Fixit Man might be autistic as heck.