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Should I tell my family that I have autism?

Lysander

Lysander

Well-Known Member
I was diagnosed 6 years ago, but my family is still unaware.

For context, I've always had a difficult relationship with my family. After I turned 16, I left home and started meeting with a psychiatrist. My family interfered by calling the psychiatrist at his office and telling him that they thought I was psychotic. They might have been afraid that I would mention the physical abuse and wanting to protect themselves by saying that I "make things up". That's a cynical interpretation, because it's also true on my part that I was severely sleep deprived and acting aggressively. So based on that, I was diagnosed with psychosis, which was then dropped and replaced with PDD-NOS, but only after nearly two years. Since I was under 18, it was difficult to get anyone to take me seriously. I didn't speak to any of them for 7 years after that. All the evidence seemed to suggest that they'd be happy with that.

But in the last year, I started talking to them again. I felt guilty for not being in contact for so long, which made it difficult. But now, I've been to visit them, and I've done some things to help my mom. Seeing my husband's family and how bravely he soldiers on around them inspired me to try making amends.

I'm afraid that I'm just fooling myself into believing that my family might accept the diagnosis as valid. Or, fooling myself that they might like me, even a little bit. But at the same time, I love my family immensely and all families have arguments to one extent or another. I just really for the life of me can't tell the difference, I can only guess what's really true for my family.

Anyways, I'm probably not the only one here who has faced a similar dilemma. I wonder what you guys might do in this situation? Sorry for the long post! Any and all insights and perspectives are immensely appreciated.
 
Default to this question: Need-to-know basis only. With that in mind, do they truly need to know?

Then consider you have been estranged from your family for some time.
 
I'm sorry you have to go through that. I don't know if it would be a good idea to tell them, not trying to offend I am really sorry if I do but they don't sound like the most supportive family ever.
 
Only my close family members know, but unfortunately my mum (she had to know and helped with the diagnosis) has told one or two people outside this circle... so it's best to be careful who you tell.
 
Disclosure is never an easy decision. I was diagnosed over 30 years ago and it drove a wedge between myself and my family that persists today.
I said in a video that "for many people family is non-negotiable, they have to be the ones to be told first" but there are exceptions to every rule and this may be one of them.
My own take, based on the limited information herein, is that you are happy to have built bridges with your family but you are afraid disclosure may break those bridges. The time to tell them, if you feel they have a need to know, is when that fear is gone - when you feel confident no damage will be done.
 
Knowing my parents, it could turn it similar for me.
Are you sure you want to be in contact with them if they reject you because of a diagnosis?
How did you manage to leave home so early?
 
@WereBear That's an astute observation. The truth is no, and that's probably why I feel like a burden. They are so wrapped up in their own problems that my very presence at home was dreadfully inconvenient. If I did something too well - they were jealous. If I failed - they hated me for being such a curse upon their lives.

My mom divorced her first husband around the same time that she became pregnant with me, and it feels like they - all of them - choose to blame me. There is no room for me to struggle, or need help, or feel sad.
 
Don't feel guilty. You are not obligated to family. As for telling them - it depends on what you are hoping for. Sounds like your family might end up using it to prove they were right all along (because they probably are not familiar with high functioning and that it's not a mental illness).
I told my family with hopes that they might could give me feed back on things I did when I was little, but the only feedback I got was refusal to believe it.
If you do decide to tell them, just try to avoid any preconceived expectations.
 
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My own diagnosis came about from family, it'll be 18 years to the day next Tuesday since they finally figured me out, my Sister in law discovered it after working with Autistic adults in a Home in Gloucester, England for a while and noticing when she came up to Sheffield with my Brother that I was like some of her clients, so they went online, got information and took it up to the Doctor's, and from there the diagnostic process began.

I was finally formally diagnosed on the 23rd of October 1999 at the Northern General Hospital via an MRI scan (a second one because they "lost" the results of the first one! Smh @ The NHS!)
 
I wouldn't during a re-establishing relationship time. It will just give them a label to distort.

'See Ma, I told you she was one of dem dere Aspiburgers'
 
Lysander said:
They are so wrapped up in their own problems that my very presence at home was dreadfully inconvenient. If I did something too well - they were jealous. If I failed - they hated me for being such a curse upon their lives.

My mom divorced her first husband around the same time that she became pregnant with me, and it feels like they - all of them - choose to blame me. There is no room for me to struggle, or need help, or feel sad.
Click to expand...

I can't imagine attempting to tell them under such circumstances. But then I suspect neither do you.

Take care, whatever you decide.
 
Lysander said:
I'm afraid that I'm just fooling myself into believing that my family might accept the diagnosis as valid. Or, fooling myself that they might like me, even a little bit. But at the same time, I love my family immensely and all families have arguments to one extent or another. I just really for the life of me can't tell the difference, I can only guess what's really true for my family.
Click to expand...

This really saddened me deeply when I read this, but this is so true of our population. I think we do often (or I do) want to believe so much that someone is sincere in their friendliness and expressions of care for us. It is devastating to find out someone didn't really care and even didn't like us. I have felt like a fool on many occasions.

My biggest concern for you would be how you might handle it if you were rejected or attacked in your personhood over this confession. I know the pain would be immense for me to deal with. it would be like a rejection of who I am. A rejection of me. But to other people, an autism dx may be very negative and they may actually think they are protecting us. Some people seem deeply sympathetic and tell me they are sorry when they hear I am autistic. I know they mean well so I am not offended. Baffled, but not offended. If you decide to tell them please have a good support system ready and be prepared NOT to receive this against who you are. Have a good escape route planned with a healthy way to calm yourself as quickly as possible. Perhaps your boyfriend could go with you? I think it would be best to not be alone when you risk this anyway. I hope the best for you.
 
Lysander said:
Anyways, I'm probably not the only one here who has faced a similar dilemma. I wonder what you guys might do in this situation? Sorry for the long post! Any and all insights and perspectives are immensely appreciated.
Click to expand...

Will telling them help you?

I have pretty good relationships with my parents, but:

* My mother has no concept of tact, privacy, or boundaries. She has blabbed very private stuff about me to just whoever because it was on her mind at the moment. So I'm not telling her.
* Before I sought out a counselor and was diagnosed, I asked my father if he thought I was autistic. He said, "All I know is, when your brother found out he was bipolar, he was thrilled to have an excuse for his behavior."

So, while I love them, my parents aren't capable of or willing to provide any understanding or support in this matter. There's no benefit to telling them, so I'm not telling them.
 
Graphin said:
How is autism diagnosied with an MRI?
Click to expand...

They scanned my brain (and yes they did actually find one!) anf found out I had AS.

But like I said earlier, I had to have 2 scans because they "lost" the results of the first one.
 
I'm focusing on your strained family relationship more than your Autism here. If you don't expect your family to be respectful toward you, you are best off keeping elements of your life away from them. You are under no obligation to tell them about your Autism, especially if you feel you might be ridiculed or emotionally attacked for admitting it. I am in agreement with everyone's opinion about Autism being greatly misunderstood. I would hope you have much more to talk about with your family besides Autism. If you suffer from the "honesty" syndrome as I do, you might feel compelled to "admit" you have Autism, as if it is something you must "confess". Whatever you need to get accomplished with your relatives can be done without Autism tainting their view of you. It is always possible to tell them if and when they might need to know. I can imagine that reacquainting yourself with them is already a stressful endeavor. Be your own best friend and keep it as simple as possible.
 
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