Questions For Adults Who Were Dx Late?

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I've got many, many questions but don't want to flood the board , so I'll group some together.

1. Did you know you had ASD before your Dx?
2. What made you get a Dx or was it advised by someone else?
3. Was there anything in your childhood that you personaly remember indicating ASD?
4. If you struggled with life before a Dx , did just knowing your had ASD help your struggles?
5. If you had comorbids , were these treated differently after Dx?
6. If you had comorbids , were these a direct result of ASD?
7. What were the pros and cons for you after recieving a Dx?

I've read and edited these questions several times in the hope that they are not confusing as I realise that "being literal" and "idioms" can cause misunderstandings for some

1. Yes, for around 10 years - I was unofficially diagnosed by an autism specialist.
2. I was forced to get a diagnosis owing to a horrible situation that arose in my workplace.
3. I remember stimming constantly.
4. Yes, it did somewhat. It made me come to accept myself the way I am.
5. My comorbids were not treated after diagnosis.
6. Yes, because my comorbids were a direct result of my many social failures, being unable to understand the motives of others, and being vulnerable to abuse.
7. Pros - I'm happier within myself. Cons - people sometimes treat me as if I'm completely incompetent and 'baby' me.

My husband has ASD.

1. No he did not know before hand, and was diagnosed at age 50.

2. I armed twisted him after he was put on temporary disability at work. Had a major meltdown where the police and EMS were called.

3. His whole early life was one big Aspie nightmare. But he was verbal and smart, so weird behavior didn't equal SPED services back then. There really weren't any to be had.

4. It saved our marriage. He now knows the reason he automatically does certain things.

5. No. Most of the doctors don't know how mild ASD works with mental health issues.The treatment is substandard in my opinion.

6. I think his depression and anxiety are 20 (life happens)/ 80 (events caused by this ASD).

7. For me (his wife) no cons. No diagnosis meant no more marriage. My husband needed help and everything was missing the mark. He says he is glad to know his behaviors are not because he is a selfish, self centered rotten person. Knowledge is power.

1. I believed that I had autism before my diagnosis. I had done about 18 months of study and research about it.
2. I pursued a diagnosis after having been self-identified with the help of a few self-reported screening tests.
3. Yep! Neologisms, special interests, selective mutism, bullying, routines, synesthesia, anxiety and obsessive compulsions, etc.
4. Having had my autism confirmed with a diagnosis, I felt that all my behaviors and characteristics were understandable.
5. My comorbids include depression. But, I have always believed that it was simply an "almost-autism" diagnosis back in the 1970s when most American diagnosticians misunderstood autism. I always disagreed with my diagnoses of depression.
6. My other comorbids include Obsessive-Compulsive Personality Disorder and Generalized Anxiety Disorder. They are results of my autism.
7. Pros: Autism is amazing, and I enjoy the autistic community. Cons: Too many people still have little understanding of autism.

1. Did you know you had ASD before your Dx? I did not. The general consensus was that something was off with me, but no one knew exactly what it was.

2. What made you get a Dx or was it advised by someone else? My spouse and I went in for marriage counseling and the woman got one look at us and decided we needed individual help first. That counselor woman was the one who got the dx ball rolling.

3. Was there anything in your childhood that you personaly remember indicating ASD? Absolutely. I would go mute, I had sensory problems, I toe walked, did a hand motion thing, avoided eye contact... the list goes on and on.

4. If you struggled with life before a Dx , did just knowing your had ASD help your struggles? Maybe? It certainly put things into perspective for me and forced me to face things I likely would not have faced otherwise. Knowing I had autism gave me a direction to go in when it came to coping techniques. That was amazing.

5. If you had comorbids , were these treated differently after Dx? Yes and no. Mostly it was a removal process for me. The rapid cycle bi polar, for example, was dropped from the 'what's wrong with dossa list' and it was determined that my down times were me shutting down and my manic times were me having meltdowns. The dx put my other stuff on the table for questioning.

6. If you had comorbids , were these a direct result of ASD? I think my dx lists still includes (alongside autism); OCD, GAD, psychosis nos, and a dissociative disorder. With the OCD and GAD... who knows... I do know that my sensory crap can make my anxiety symptoms go through the roof and the OCD is perhaps fueled now and then by my need for sameness and routine. But I very well could have had those two without autism. The dissociative crap and psychotic episodes are a result of my dysfunctional childhood and had nothing to do with my autism.

7. What were the pros and cons for you after recieving a Dx? Pros definitely include having a starting point so I could learn coping mechanisms that actually worked. It's hard to find help for things like meltdowns and shut downs when people treat them as bi polar issues... medication did not work for me, making changes in my life and how I function is what helped. I could not have done that without knowing what was going on with me. Cons? I dunno. I cannot think of any at the moment.

1. Did you know you had ASD before your Dx? No.
2. What made you get a Dx or was it advised by someone else? My doctor (psychiatrist), whom I was seeing for my ADHD meds, told me she thought I had it and asked if I'd like to be tested; I said "Yes", was tested, was positive for Asperger's.
3. Was there anything in your childhood that you personaly remember indicating ASD? Practically everything on the list: problems relating to / reading others, meltdowns, no eye contact, stimming, MAJOR cognitive issues, etc.
4. If you struggled with life before a Dx , did just knowing your had ASD help your struggles? When I FIRST got my Dx, "No"; after coming HERE, to Wrong Planet, "Yes".
5. If you had comorbids , were these treated differently after Dx? No.
6. If you had comorbids , were these a direct result of ASD? I think, mostly, yes.
7. What were the pros and cons for you after recieving a Dx? Pro: having "definition"(everything explained); after coming to WP, it was good to meet people who were in the same boat as me, and I learned alot about myself, and how to deal with things. The only con I can think-of, is when I've told other people, and then everything is MY fault, cuz I'm the one who's "damaged".

Yes, I suggested the possibility to my doctor.

Inability to function; severe depression.

Lots ... circle walking, leaving the group to wander off on my own, poor social development.
Yes, because it offers an explanation for my behaviour.

Yes. Different medications were successfully tried.

I believe so.

No cons. Pros: appropriate treatment and support, greater self-awareness.

1. I heavily suspected through a series of coincidences that led me to research ASD in females although given my bad experiences with mental health professionals throughout my life I doubted my own mind about it.
2. My 2 daughters are awaiting their assessments for ASD and my mother suggested I look into it.
3. I've always been withdrawn from people and I am considered 'weird' in comparison to NTs. Everyone just assumed that trauma was the cause for all the difficulties I have had in my life.
4. I still struggle, but I know there's a reason for my struggles so it makes things easier. Knowing this is the way I am is fine by me. It's not me that is the problem, it is the way everyone has treated me not understanding my needs when I never understood them myself. If people don't accept me, it's their problem; not mine (however I have adopted this attitude since my late teens).
I don't really have a downside to a Dx, if I don't want to disclose anything then I don't have to. My Dx is my business and unless I feel the need to disclose then I won't say anything. I continue to be the quirky person I am for no apparent reason to many people.

Will answer in reverse order. Wasnt dxd a few years ago when I was almost 60.

7) All upside. No downside. Would have been better if I had been dxd decades earlier though. But it still helps to know-even its just for one's self.

5 and 6: No comorbids that I know of. Unless "coming from a dysfunctional neurotic family" counts as a "comorbid". Lol!

4) Hasnt hurt. Has helped in small ways. Wouldve been better had I been dxd decades earlier

3) Too many things to ennummerate. Basically: was always hated by all my classmates on one hand, while at the same time my parents gave me constant s**t for me "not making any friends" on the other.

2) Mom and sis suggested I might be aspie. When mom descended into alzhiemers and I was persuaded thta it was urgent to get an official dx.

1)Wasnt dxd until like three years ago when I was almost 60. I, and my mom and sis each kinda suspected I might have it for a few years before that. The lady shrink I was going to had "never even heard of aspergers before" even though this was more than a decade after it was put in the DSM. Thats the short answer.

However:dial back to the late Sixties when I was around ten. Autism had recently become recognized as a thing, but had not yet been expanded to a "spectrum". So (a) autism briefly became the "disease de jour" in the media (remember listening to a long radio talk show with parents of autistic kids and experts back then), but (b) autism as a label was only applied to what are now called "type 3" low functioning autistics.

When listening to the show I couldnt help thinking that "these autistics kids remind me of myself when I was a younger kid, even though they are a little more extreme than I was even then. Maybe there is some kind of watered down version of autism, and maybe I have it." But I dismissed the idea, and didnt think about it much afterward for a long time. Then 25 years later, in 1994, the medical establishment expanded ASD to include me. So apparently my ten year old self was right.

A DX is a lot like finding missing puzzle pieces--no guarantee that you will be able to assemble the puzzle, even with the pieces, but it certainly can explain a lot...

1. Yes, one year beforehand.
2. A diagnosis meant I could get help and out of my menial job.
3. Yeah, the entire thing.
4. No, but knowing about autism gave me tools like dating and social books which helped.
5. My other diagnosis was dysthymia, a chronic mild depression. We talk about it a little in therapy but other than working on ASD issues, there's not much to do for it.
6. I believe so, yes. Had I been diagnosed as a kid, I may not have had to hide so much pain.
7. No cons, my work situation is better, I have plans for school, and dating is better. I tried counseling a couple times before and my difficulties with conversation flow and other things made the sessions frustrating. With my current therapist, the conversations are enjoyable and her advice is actually helpful.

Last edited by EgotisticalAltruist on 10 Sep 2016, 10:59 am, edited 1 time in total.

That is a bit of a worry for me - I might just be a selfish , self centred rotten person.

Yes. I was 25 when I got diagnosed and I supposed I am in the spectrum since I were 23. But my grandma suspected it even earlier - when I were 17 she took me to a psychiatrist to get me evaluated for Asperger. But I refused to attend the meetings after first one because they were expensive and I didn't want my family to pay for me getting the label of "crazy".

I have trouble getting a job so I figured having an official diagnosis will help me in this field. I also wanted to make sure I am not fooling myself.

Well, there were stuff. For example the constant bullying I experienced from peers and me asking grandma "Whats wrong with me or them!? I don't understand! Why cant I have friends like everyone else!?" while crying. I also had sensory issues and stimming but I didn't consider them weird back then(I was only curious why other kids don't consider it pleasant).

I wonder. At very least I have an explanation for my quirks so people are more accepting. And I gained confidence because I know my struggles are not my fault therefore I have right to make mistakes other people don't do. I became more outgoing because I no longer worry people will get angry with me.
But on the other hand I pay too much attention to my sensory issues now and I worry if my ASD won't affect worklife (in theory I have the right to get accomodation - but I lived my whole life without accomodations so I don't know how to ask for them yet methods I used before no longer work because I know they make me try too hard compared to other people and it feels just unfair).

I suppose I have an anxiety disorder but I am not sure if it isn't just famous resistance to change because the anxiety hits me when change is supposed to happen. It's not being treated yet because I didn't contact my psychiatrist about it. When anxiety hits me I get too depressed to go to him and when I don't have anxiety I don't feel any need to go to him...
Oh. And diagnosis process helped a lot with my alexithymia. The psychologist taught me how to name feelings.

I used to have social phobia and depression during middle school and it was direct result of Asperger - or rather direct result of the bullying I received due to Asperger symptoms.
Also the anxiety issues I currently have seem to be related to Asperger - they happen before changes, especially f the change involves dealing with social situation I know little about.
But alexithymia might have been side effect of Asperger or side effect of being raised by a father with Asperger traits (he never understands how people feel so my feelings were often ignored when I were a kid and I was actually yelled at when I was crying).


Pros:
- I can tell people I have Asperger without feeling like a liar.
- My family believes me when I say something is too hard.
- I am allowed to leave family meetings when I am overloaded.
- I am allowed not to attend family meetings.
- I am allowed to cry.
- I have a paper to show to potential employer so I can get accomodations.
- The employer gets money from government by having me as an employee.
- I got better at recognizing facial expressions and understanding people.
- My social confidence increased.
Cons:
- I am unsure if I should tell potential employer that I have Asperger or not.
- My sensory issues increased because I pay too much attention to them.
- I stim more.
- Some of my copy mechanism stopped working.
- I find myself doubting my ability to get a job and live on my own.
- I question if I were diagnosed right.

1. Did you know you had ASD before your Dx?

I couldn't have known, but did strongly believe it for quite some time before when I self-diagnosed.

2. What made you get a Dx or was it advised by someone else?

I believed I had autism and had been happy to self-diagnose for some time, but I realised that all self-diagnosis did was start to help me make sense of things in my head. It offered me no explanation that I was willing to provide to other people, and I had to think about my future and what would happen as the years went by. I realised that it might help me to be able to access support and understanding from others, and for that I needed an official diagnosis.

3. Was there anything in your childhood that you personally remember indicating ASD?

I never managed to make a friend. I suppose that was the biggest indicator. I'm still piecing my childhood together from my new point of view, but there are other things I've thought about. I never lined up toys, but I did split them into categories. I kept myself to myself, had special interests that stopped me from doing other things, liked certain textures, didn't interact well with peers, had issues around certain foods/drinks, I was very academic until my special interests took over.

4. If you struggled with life before a Dx , did just knowing your had ASD help your struggles?

Yes. I spent my whole life fighting to be NT and my diagnosis gave me permission to relax and stop fighting as much. It also gave me the understanding that helped me to forgive myself for the way I am, and my limitations, and also to be more understanding of how other people might see me and why people respond to me the way they do. I'm also learning to understand the reasons and explanations for how my brain works, which has helped me to develop more coping mechanisms. Self-diagnosis made a huge difference to me, but since being diagnosed I've really started to understand just how much my autism affects me.

5. If you had comorbids , were these treated differently after Dx?

N/A

6. If you had comorbids , were these a direct result of ASD?

N/A

7. What were the pros and cons for you after recieving a Dx?

The pros are as above.

I suppose the only cons were having to tell people, and their reactions being a bit hard to navigate emotionally.

1. Did you know you had ASD before your Dx?

I suspected. I ran across a description online which described the signs of autism and thought it fit me. I was 44 at the time. However, since I was aware that it was far too easy to be a hypochondriac and look at a list of symptoms and see yourself in them, I contacted the local Autism society and arranged to go in for a diagnosis. There was a six-month waiting list — diagnosing adults is not their main focus — but it was free. So, some six and a half months later, I went in, got interviewed, did some tests, and eventually was told I had Asperger's Syndrome. This was followed a couple of weeks later by an official letter certifying the diagnosis.

2. What made you get a Dx or was it advised by someone else?

I was unemployed at the time and my relationship with my Employment Service Provider had completely broken down since I thought they were a bunch of lying scumbags. I still do, for what it's worth. I had asked to be reassigned to different Provider, since, given the state of the relationship, I clearly wasn't getting anything from interacting with them (or, rather, avoiding interacting with them, since I wanted as little to do with them as possible). I was told that it was impossible for me to be reassigned; I was stuck with them unless I could present some valid reason to be transferred to a different Provider.

When the official diagnosis came it was like a God-send since it allowed me to present a valid reason for why I needed to be reassigned to a different Provider, which duly happened.

There were a few good and decent people working at the Employment Services Provider — it was mostly the management that were scumbags — and I was discussing my suspicions about being autistic with one of the case managers, who pointed me in the direction of the local Autism society for the official diagnosis. So, I guess, you could say they advised me to get a diagnosis.

3. Was there anything in your childhood that you personaly remember indicating ASD?

I recall a bunch of visits to assorted doctors' offices when I was three or four. This would have been around 1965-66. I can't remember what they were about specifically, but my father would occasionally refer to me as an "emotional cripple" afterwards, a term I never liked. I suspect that I may have been diagnosed with something, but if so, no-one ever told me what it was. My mother died when I was ten and my father died when I was thirty.

Possibly my mother might have told me about it when I was in my teens, if she lived and if it there actually had been some sort of diagnosis.

4. If you struggled with life before a Dx , did just knowing your had ASD help your struggles?

I had sought out counseling and even therapy on few occasions prior to my diagnosis to try and figure out why I seemed to keep getting bogged down in inane arguments with people who seemed to expect me (i) be compliant, even though they refused to present any reason why I should; (ii) respect their "Authority" even though they hadn't displayed any; and (iii) go along with the prevailing group-think, even though it was clearly wrong. It didn't help that most of them couldn't argue worth a damn, so discussions tended to go in circles, with them trying to emotionally bully me into compliance and me insisting that they offer actual reasons for why I should comply.

After the diagnosis, this ceased to bother me.

I don't know if it was the diagnosis or if I had coincidentally just reached the point where I concluded that a significant portion of the population were functional idiots and the only sensible thing for me to do was avoid contact with that portion when I could and minimize interaction with them when I couldn't. It was probably coincidence.

5. If you had comorbids , were these treated differently after Dx?

I didn't have comorbids. I had some superpowers, such as very keen hearing and being invisible (a lot of people don't notice me even when I'm standing in the middle of a brightly lit room — and I'm not a small person — and they are startled when I speak or otherwise do something to draw attention to myself).

6. If you had comorbids , were these a direct result of ASD?

I think they were part of the ASD. I've read other people on the spectrum talk about having similar experiences.

7. What were the pros and cons for you after recieving a Dx?

Pros: I had a framework into which I could fit my various experiences, which meant I stopped worrying about them so much. I also discovered a wealth of resources such as various books written by and about autistics and forums such as this one in which people shared information about the condition and how they dealt with different aspects of it.

Cons: Being told "You must be very high functioning" by assorted people when I tell them of my diagnosis. I know they are most likely trying to be nice, but seriously...

Hope this is the sort of thing you were after.

I like your attitude!