Things have been worse since I found out I was autistic

[QuestJan]

it has been life changing for me in a good way. There is now an explanation for why I am the way I am. A whole new world has opened up to me.

I took an autism class in graduate school. My shock was that it inadvertently described "normal" - assuming the state opposite of autism traits was "normal". I had no idea that the 68.2% were like that. That was the eye-opener.

I would not want to be them.

 

[Ken]

Hi all,

Nice to be here.

I had a question to ask. I am a woman in her mid 40s. I've read a lot about autism since I found out I was autistic. It seems very common for people to say that they are relieved and that things have improved for them once they got their diagnosis. The opposite has proven to be true for me. I am getting on much worse with my family - they seem to think that the diagnosis means that I am magically better and can deal with life and relationships as if I'm neurotypical. Their words often make me feel like they don't even believe I am autistic. My frustration turns into anger and my anger sometimes turns into rage, which I have been unable to control at times. I am in a downward spiral that started 2 1/2 years ago.

Did anyone else feel like this when they found out?

Thanks

So sorry you are having such a negative experience.

I was elated upon discovering I am autistic because it answered all my questions about why I am so different. I wanted to tell everyone, but I didn't. Now, I'm very glad I didn't. I have learned that almost no one knows what autism really is - not even most psychologist. So, the only people that I have told is my wife and primary care physician. It has been tough educating my wife, but I'm sure the rest of my family would be totally hopeless. My PCP didn't say a word, she just added a note in my file.

Initially, even my wife thought that since I knew I was autistic I should be able to fix it or compensate for it. It took a while, but she now knows better.

I hope your family will eventually become educated enough to exercise some compassion and understanding. But, I'm sure that will take some time.

In any event, nothing is really different. You are still you. But I know how hard, frustrating and maddening it is to deal with ignorant opinions.

 

[Neonatal RRT]

I'm so very sorry you had this terrible response and unwillingness from you're parents and what not. BUT you cant take that as a clear line that everyone is like this and from that draw the conclusion its better to hide .

Interesting you got that interpretation from my post that "everyone" is like this, and from that, draw the conclusion it's better to hide,...not quite what I had intended.

The OP had and is having a bad experience, as well.

On the other hand, and I have said this many times on here on different threads,...to whom you chose to disclose your autism to is highly individualized,...I was not clear with this,...my fault. However, there are many folks on this forum who have had bad experiences,...similar to mine,...the "late diagnosis" and then having it backfire on them upon "coming out" to close family, friends, and the boss at work. Having said that, sometimes it IS best to be very forthcoming,...for me,...it's my students and new employees that I am mentoring. I've never had an issue with this,...mainly because they have not the personal history with me and have formed a moral diagnosis prior. It seems that once someone you know has formed a judgement of you,...it is difficult to overcome this,...even with a professional diagnosis that lends some explanation. "Hey, guess what? You know when this happened and I reacted that way? It bothered me so much I went to the psychologist, was tested,...and I've had a form of autism that I didn't even know I had." This is my personal experience, but I have never,...never,...had anyone I knew prior to have any sense of acceptance. I've got a few to say, "OK",...nothing more,...no questions,...no "How does this make you feel?",...zero interest. My wife,...still,...it's been 3 years now,...very quiet,...never giving any indication of understanding. This is my rock, my partner of 35 years,...a highly educated person in the medical field. She hasn't said anything that would indicate denial,...she was part of the interview process with the psychologist,...but it's like, "Well,...you don't have that bad of autism." "Excuse me,...my social responsiveness was rated "severe",...but I guess all that means is that I am an introvert?" "No accounting for my sensory experience?....You'd call an ambulance...You have no sense of perspective."

Yes, there are many, many people who have an autism experience far, far worse than I do. I get it. However, do we all have to be that severely disabled child in order for an adult autistic to receive some sense of acceptance from the people in our lives? All I would like is some indication that someone I knew prior to my diagnosis has some sense of empathy and acceptance,...which I haven't seen yet.

 

[Sarah S]

Interesting you got that interpretation from my post that "everyone" is like this, and from that, draw the conclusion it's better to hide,...not quite what I had intended.

The OP had and is having a bad experience, as well.

On the other hand, and I have said this many times on here on different threads,...to whom you chose to disclose your autism to is highly individualized,...I was not clear with this,...my fault. However, there are many folks on this forum who have had bad experiences,...similar to mine,...the "late diagnosis" and then having it backfire on them upon "coming out" to close family, friends, and the boss at work. Having said that, sometimes it IS best to be very forthcoming,...for me,...it's my students and new employees that I am mentoring. I've never had an issue with this,...mainly because they have not the personal history with me and have formed a moral diagnosis prior. It seems that once someone you know has formed a judgement of you,...it is difficult to overcome this,...even with a professional diagnosis that lends some explanation. "Hey, guess what? You know when this happened and I reacted that way? It bothered me so much I went to the psychologist, was tested,...and I've had a form of autism that I didn't even know I had." This is my personal experience, but I have never,...never,...had anyone I knew prior to have any sense of acceptance. I've got a few to say, "OK",...nothing more,...no questions,...no "How does this make you feel?",...zero interest. My wife,...still,...it's been 3 years now,...very quiet,...never giving any indication of understanding. This is my rock, my partner of 35 years,...a highly educated person in the medical field. She hasn't said anything that would indicate denial,...she was part of the interview process with the psychologist,...but it's like, "Well,...you don't have that bad of autism." "Excuse me,...my social responsiveness was rated "severe",...but I guess all that means is that I am an introvert?" "No accounting for my sensory experience?....You'd call an ambulance...You have no sense of perspective."

Yes, there are many, many people who have an autism experience far, far worse than I do. I get it. However, do we all have to be that severely disabled child in order for an adult autistic to receive some sense of acceptance from the people in our lives? All I would like is some indication that someone I knew prior to my diagnosis has some sense of empathy and acceptance,...which I haven't seen yet.

That was indeed the way i interpend you're reply as that its better to stay silent yes and thank you for clarifying this to me and the others .

As you so accurately state there is obviously risks involved with actually coming out with this and or other diagnosis . And i have never meant to imply otherwise. Lord knows i had my fare share of being burnt or getting backfire.

BUT in my case i have to also admit that since i am and have always been open about this i have also prevented being misunderstood and or regarded as a retard due to it ( which was the case most of my young adult hood ) & gained respect and understanding rather then having to mask or try to hide and that's what i mean with my statement of its better to be open with this rather then trying to hide and in terms be regarded as a retard based on misunderstanding.

We all know that back prior to say 70 `s us with this and or other diagnosis were treated and regarded as retards back then due to they didn't know anything about this kind of diagnosis. And we were usually hidden away > 50 `s or being so bullied from young age that we became lone wolfs (yes that's my child hood ) & that's why i still advocate its better that we dare to stand up for our selves and yes sometimes we get burnt from it.

If we just try to hide and mask then how are people around us suppose to have chance of actually trying to understand that this is why we behave and think and function in other ways then what's considered normal ?

FYIA this evening my step mother have actually accepted my diagnosis as well (87 ) as my step brother talked to her today & let her know (im going to my reel dad to visit hence im of for a week ) all about me so again being honest and upfront have again worked in my life (dad already know and have accepted since before )

 

[Neonatal RRT]

That was indeed the way i interpend you're reply as that its better to stay silent yes and thank you for clarifying this to me and the others .

As you so accurately state there is obviously risks involved with actually coming out with this and or other diagnosis . And i have never meant to imply otherwise. Lord knows i had my fare share of being burnt or getting backfire.

BUT in my case i have to also admit that since i am and have always been open about this i have also prevented being misunderstood and or regarded as a retard due to it ( which was the case most of my young adult hood ) & gained respect and understanding rather then having to mask or try to hide and that's what i mean with my statement of its better to be open with this rather then trying to hide and in terms be regarded as a retard based on misunderstanding.

We all know that back prior to say 70 `s us with this and or other diagnosis were treated and regarded as retards back then due to they didn't know anything about this kind of diagnosis. And we were usually hidden away > 50 `s or being so bullied from young age that we became lone wolfs (yes that's my child hood ) & that's why i still advocate its better that we dare to stand up for our selves and yes sometimes we get burnt from it.

If we just try to hide and mask then how are people around us suppose to have chance of actually trying to understand that this is why we behave and think and function in other ways then what's considered normal ?

FYIA this evening my step mother have actually accepted my diagnosis as well (87 ) as my step brother talked to her today & let her know (im going to my reel dad to visit hence im of for a week ) all about me so again being honest and upfront have again worked in my life (dad already know and have accepted since before )

Thanks for the response.

Perspective. I am coming from a perspective on an ASD1,...and a very late diagnosis. For autistics that appear to be successful, intelligent, are married, have children,...the personality, communication, learning, and sensory experiences,...those things are seen by others as "slightly odd" and are usually put into a "moral" diagnosis. The people in our lives may not be open to the diagnosis of autism,...it is often seen as nothing more than an "excuse" and a "label". For many of us that fall into that ASD1 category, we may be "wierd", "something is off", "introvert", "socially awkward", "an irritating know-it-all",...many things,...but not autistic to the people around us.

Looking at your profile, I am going to assume that being an ASD3 with a much earlier diagnosis is a whole different experience.

 

[clg114]

Welcome to Autism Forums!

 

[ForestGumpett]

Didn’t know until I was about 60, made a lot of things in my past make sense. Didn’t work out well telling past friends or the little family that is left, not at all made things worse except for my husband it made things better there, they were good with us but more made sense. I don’t really care about the few left that act poorly, they acted poorly before just worse now. Will make it easier to say bye.

 

[Gerald Wilgus]

Didn’t know until I was about 60, made a lot of things in my past make sense. Didn’t work out well telling past friends or the little family that is left, not at all made things worse except for my husband it made things better there, they were good with us but more made sense. I don’t really care about the few left that act poorly, they acted poorly before just worse now. Will make it easier to say bye.

Friends are the family we choose, at least for me. Today kayaked a remote stretch of the Manistee River with some friends. I organized it and my spouse, remembering a birthday, baked a peach pie since the B'day boy doesn't like cakes. We were able to take it downstream in a kayak and pull it out as a surprise after a lunch along the river, and with whipped cream, too. I feel blessed having good friends. And my spouse has the people skills for the both of us.

 

[Crossbreed]

Hello & welcome @Jonah.
(I have never heard that as a woman's name before...)

Learning about your autism isn't the source of relief.
Factoring it into your memories and coping strategies (going forward) is.

Anger issues could be a co-morbid issue that needs to be treated in a conventional way.
I am not questioning your right to express your anger. (There are just healthful & unhealthful ways of doing so.)
Seek out an autism-competent counselor.

If you are in the USA, see Autlanders, Thriving Outside of the Box: Finding Support Resources in the USA...

 

[Sarah S]

Thanks for the response.

Perspective. I am coming from a perspective on an ASD1,...and a very late diagnosis. For autistics that appear to be successful, intelligent, are married, have children,...the personality, communication, learning, and sensory experiences,...those things are seen by others as "slightly odd" and are usually put into a "moral" diagnosis. The people in our lives may not be open to the diagnosis of autism,...it is often seen as nothing more than an "excuse" and a "label". For many of us that fall into that ASD1 category, we may be "wierd", "something is off", "introvert", "socially awkward", "an irritating know-it-all",...many things,...but not autistic to the people around us.

Looking at your profile, I am going to assume that being an ASD3 with a much earlier diagnosis is a whole different experience.

As i said i completely understand the difference and how this would make things more difficult.

On that one we can both agree yes.

 

[Jonah]

Thanks everyone for sharing your advice and personal experiences - it's very helpful.

I'm a little concerned @Crossbreed regarding your comment on my anger being a comorbid issue. I'm not certain what you mean by this. I am not someone who tends towards anger or lashing out against others, as a general rule. On the rare occasions it happens, I am usually at the absolute end of my tether, and as a result of multiple pressures piling up on me as has been the case this year. When I sit down and write out all of these pressures, I feel like any number of them would potentially result in a NT person experiencing anger/rage also, let alone all of them: ongoing anxiety/depression/suicidal ideation, feeling misunderstood, isolation and reduced opportunity to engage in activities that I use to self-soothe due prolonged Covid lockdowns (more than 200 days now, and counting), living with a family member who doesn't tolerate my differences (and who is themselves going through a major change in their life), fear that my diagnosis won't lead to any improvements in my life, living with two ASD/ADHD children who are themselves struggling at present and are lashing out, difficulties at work due to my struggles with depression etc, financial worries, withdrawing from the anti-depressant medication that I've been on for 7 years.

I was also under the impression, from reading accounts written by others with ASD, that anger/rage/lashing out can sometimes simply be an autistic meltdown due to feeling overwhelmed. I have read that in diagnostic psychology notes as well. I would never have characterised them as "meltdowns" myself in the past, but I am willing to consider the possibility that that's what they are.

 

[Crossbreed]

I'm a little concerned @Crossbreed regarding your comment on my anger being a comorbid issue.

There is pathological anger and non-pathological anger.
The former can be a secondary [co-morbid] condition to autism and is best addressed with the help of an autism-competent therapist.
The latter is just part of being human and a normal part of maturing.

It is like the difference between being depressed once in a while vs. being depressed most of the time. (The two conditions, anger & depression, are quite related, in fact.)

I would not presume which applies to you.
I am just giving you options to think about...

 

[Suzette]

@Crossbreed, thank you! I was trying to explain that very thing and failing. Your timing and explaination were perfect

 

[watersprite]

Welcome.

 

[Gerald Wilgus]

There is pathological anger and non-pathological anger.
The former can be a secondary [co-morbid] condition to autism and is best addressed with the help of an autism-competent therapist.
The latter is just part of being human and a normal part of maturing.

It is like the difference between being depressed once in a while vs. being depressed most of the time. (The two conditions, anger & depression, are quite related, in fact.)

I would not presume which applies to you.
I am just giving you options to think about...

Pathological anger can be injurious. I failed to resolve mine and it matured to an intense bitterness.

 

[22222]

I just found out I'm Autistic at the age of 69 and it does feel strange at this point in life to be making such a major self discovery. But I have no desire to tell my family about the diagnosis. I don't think they would have the slightest idea what to do with the label and since everybody's life is complex, I don't want them to think I am looking for something from them.

I am not entirely sure what constitues masking. When I have the urge to squirm in my seat like a 2 year old child because of my ADHD and I suppress the urge so to appear socially appropriate...is that masking? I don't see how it would serve my life better to allow the squirming. I also tend to blurt and interrupt people when they are talking. Is it masking to try and stop that? Now that I better understand my sensory issues, I will try to make my environment more manageable. Is that masking?

The unmasked me would have big social problems. Everybody is under pressure to conform to social expectations. It is definitely harder for me than many people but does that mean I shouldn't try? And if I do try, does that mean I am masking? I sure wouldn't make many friends with constant squirming, blurting and overstimulated meltdowns. Shouldn't I try to control these things? But again - maybe I am just not fully understanding what masking is.

 

[Magna]

Welcome, Jonah. Can you clarify something? I assume you were professionally diagnosed, correct? The only reason I ask is that if you've been professionally diagnosed and your family doesn't believe you're autistic, that's a bit different than if you're self-diagnosed and they don't believe your self-assessment as being accurate.