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Things have been worse since I found out I was autistic

Jonah

Jonah

New Member
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
 
Hello and welcome...I am in my mid forties and was only diagnosed a year ago. I have found it to be a positive experience, but I have told hardly anyone and I was clear at the beginning that my diagnosis was for self validation more than anything else.

To me it is a very personal thing and really I expect very little from others, I told my brother and basically all he said was maybe he was ASD too (when he clearly isn't)...point being I think a diagnosis is at it's most powerful when used as a tool for greater self awareness and to accept the quirks or behavioural patterns which you have rather than for others to understand you better.

For example things which maybe once I fought against within myself, I know accept and recognise their validity which has reduced my stress as I can now see them as austisic traits.

Personally I would remove myself from too many interactions with family or people in general while you process and understand what this diagnosis means.

It may take time but there will be big upsides once you find the space to learn/see them.

I hope things improve for you soon.
 
For me finding out was negative. At the beginning of high school, I was all myself because I didn't think I was autistic. Then I acknowledged it about 6 months later. While trying to mask ASD I eventually became more odd and lost friends I had.
 
Warm Wellcome to the site

For me since i was diagnosed with other diagnosis earlier adding new ones to the mix don't make any difference to my family or reel friends.

What i would suggest is you need to try to inform them about what ASD in fact is & also the fact that (depending on you're level ) you might be able to mask or indeed not showing to many tics or problems you still have this and it WILL mess with you're life and they need to try to understand this.

Further more its also a well known fact that in us wimen the signs out is less apparent on us then on the males so were more often later diagnosed then males

Reg there words hurting you . Again you need to try to not let them make you this angry and work more towards informing them about what this diagnose in fact is and how it shows on us wimen.

Sounds to me that you haven't yet accepted this diagnose and that you in fact have this which i can of course understand but again you need to try to find a way to accept that you do have this and now you need to try to learn about this and how this effect YOU (all NP diagnosis is highly individual ) and try to find a way to adapt to said problems as best you can. Believe me when i say trying to fight against this wont do you any good you WILL loose. So the best you can do is as i said learn about ASD in wimen and how this effects you and try to adapt accordingly.

I should also add that with this diagnose there are also multiple possible co morbid diagnosis which can also make things even more complicated.
 
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welcome to af.png
 
Thanks everyone for your words, they have been most instructive.

I think the biggest problem where my family is concerned is that I have lived interstate from them for most of my adult life, and since I moved back to this area I have spent much more time with them than I have since I was a teenager. They simply haven't been aware of the challenges I've faced, or the coping behaviours I've developed in adulthood, and how my "mask" drops after spending more than a week or two in their company (something they haven't really observed before).

I feel like I have accepted the diagnosis but after reflecting on your advice, I agree that more processing time is definitely needed, since this is so recent.

Thanks so much for responding to my post, I appreciate it more than you know.

J
 
Thanks for the share! I was lucky enough to be given that link relatively early on. When I was first told I might have autism I thought "No way" until I started reading literature specific to female autism. And then I was like "Ohhhhhh. Okay then."
 
@Jonah

I think you may need to set boundaries with your family and a few for yourself too.

My words are failing me today so I am supplying this definition by Psychology Today.
https://www.psychologytoday.com/us/.../4-ways-set-and-keep-your-personal-boundaries

"Boundaries can be defined as the limits we set with other people, which indicate what we find acceptable and unacceptable in their behavior towards us. The ability to know our boundaries generally comes from a healthy sense of self-worth, or valuing yourself in a way that is not contingent on other people or the feelings they have toward you."

Without specific examples of your families behavior towards you I can't provide any suggestions about how to set boundaries. (Read the above link).

But we humans tend to think that if people love us they will behave in a way that makes us feel supported and loved. But this isn't true. People are just animals with language (to over simplify) and most lack the skills and experience to act with wisdom and often empathy.

It really is up to us to tell others what behaviors we find acceptible or will tollerate.

There are many articles on the net about creating boundaries. Read a few and find an approach that works for you.
 
I was diagnosed late in life, 60, so most of my life had not been associated with autism. It was hard at times in the 60s and 70s as a teen and young adult, socially and sexually isolated because of my social deficits, and had to deal with that alone, not being able to articulate why I felt so very different from those who socialized easily. SO, once diagnosed I could understand , even as my friends already suspected I have ASD and accepted me nonetheless. But now dealing with the trauma of 14 years of isolation and loneliness that created cPTSD.
 
The second advice i can give you is try to drop the guilt my friend the faster you accept the faster you can then learn about how you work and in term adapt to said new situation. It has takend me close to 40 years to actually learn how to live and adapt to all my diagnosis and make the best of what i got to work with.

And last NOONE of us has asked to be born with our diagnosis so il be darn the day i will start to feel ashamed or the need to hide for anyone.
 
Thanks for sharing that @Suzette.

You are so right. Setting boundaries with family is incredibly difficult, especially when the requisite "healthy sense of self-worth", which often eludes me.

@Gerald Wilgus - thanks heaps for sharing your perspective. That must have been so tough.
 
Thank you @Sarah S! That may well be the hardest thing for me - especially given that the people around me have always seen me behave a certain way as an adult (ie masking), and the more I become myself, the harder it is for them to accept, because, as far as they are concerned, I have "changed" all of a sudden.
 
Welcome @Jonah! I was just diagnosed and am older with family and kids. I’ve only told a couple of people so far so I can’t offer much helpful advice. But I can say I hope things get better for you, and to definitely set boundaries as @Suzette suggests. It is really good advice.
 
Jonah said:
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
Click to expand...

A few things going on here. We've all dealt with this on some level with the people in their lives. One, most folks think they know about autism,...when they have no clue. Two, people in your life have already made a "moral" diagnosis of you,...they see your diagnosis as a "label" and an excuse. Three, right or wrong, you've disclosed your diagnosis to the wrong people,...I know, a strange statement when it comes to family.

I would never, ever disclose my diagnosis to my mother,...I love her,...but she's simply from a different generation, believes in "old wives tales" and "folk medicine", is not educated, and all of her children are perfect. My siblings,...I tried once with one of my sisters, whom I like and get along with,...educated with a PhD,...the first words out of her mouth were,..."Everyone's got a label for everything now." I never spoke again about it to anyone else in my family. Some of my close co-workers know,...but not after working at the same place for over 30 years, being an educator and mentor to them. Had I been somewhat new to the organization, I think the responses would be less than positive. Even when I spoke to the HR department, they were like, "So, this a temporary thing, right?" "You'll need to have your doctor send all the paperwork again next year if you still are in need of accommodations." Basically, autism, in their mind is a psychiatric disorder that can be treated and cured,...the level of ignorance is mind-blowing.
 
Neonatal RRT said:
A few things going on here. We've all dealt with this on some level with the people in their lives. One, most folks think they know about autism,...when they have no clue. Two, people in your life have already made a "moral" diagnosis of you,...they see your diagnosis as a "label" and an excuse. Three, right or wrong, you've disclosed your diagnosis to the wrong people,...I know, a strange statement when it comes to family.

I would never, ever disclose my diagnosis to my mother,...I love her,...but she's simply from a different generation, believes in "old wives tales" and "folk medicine", is not educated, and all of her children are perfect. My siblings,...I tried once with one of my sisters, whom I like and get along with,...educated with a PhD,...the first words out of her mouth were,..."Everyone's got a label for everything now." I never spoke again about it to anyone else in my family. Some of my close co-workers know,...but not after working at the same place for over 30 years, being an educator and mentor to them. Had I been somewhat new to the organization, I think the responses would be less than positive. Even when I spoke to the HR department, they were like, "So, this a temporary thing, right?" "You'll need to have your doctor send all the paperwork again next year if you still are in need of accommodations." Basically, autism, in their mind is a psychiatric disorder that can be treated and cured,...the level of ignorance is mind-blowing.
Click to expand...

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 .

The main problem we with diagnosis have is to many believes its better to mask and hide rather then actually stand up and inform and then give people around us a chance of trying to accept and above all understand us better rather then viewing us as retards.

the more we start to dare standing up and inform rather then as the old days stay in the shadows or out of the society the more chances it is that one day we will finally be accepted and understood .

I can give you all one recent (a few weeks ) my very dear half brother (whom i also going to see this time when im offline ) accepted without a shadow of a doubt ALL my new diagnosis since we last met 20 + years ago & he is 64 ( ALL he known about me is i have ADHD ) So again NOT all is cruel and unwilling to try to understand and accept. even my employers knew i had ADHD and they have all accepted this and let my actions talk for me rather then my diagnosis.

Will there be those that don't can or wont to ? Shore but then its their problems and were better of going separate ways.

Granted i have it a little easier since i was already known from 4 with my first diagnose so im already known and accepted as somewhat weird and having many problems in life. & yes im blessed with family that actually accept and respect my diagnosis. For those of you that got you're first and or only diagnose later in life i can most definitely understand it must be harder on you as you are as stated above already labeled as a normal person .

Lastly it doesn't matter how good we all think we are at " masking " the truth WILL come out one way or another sooner or later so better to be upfront from the start i say and let them decide if they can or are willing to accept me as i am or they can just take a hike. Simple as that
 
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the 68.2% assumes we are "wrong". They want to force us to assimilate to them. Even the 68.2% NTs that are activists for race, gender, age, whatever - draw the line for us. I can name names. Then they accuse us of having no empathy. Thanks to "autism expert", Simon Baron Cohen, many assume that autism is narcissism for retards.
 
Welcome. At the age of 65 I have finally concluded after much research and online testing, in which I tried to prove that I am not, that I am on the spectrum and 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. A different way of seeing that I have suppressed all of my life in order to fit in. I heavily masked. I refuse to any more.
 
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