Being diagnosed as an adult and informing your parents

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I was recently diagnosed with ASD. I'm concerned that after I share this with my father he is going to feel guilty and wonder what he could have done when I was a kid.

Just for some background:
I'm 41. My father is 67 and just got through treatment for lymphoma last summer, and that's made him very reflective. My IQ is high, executive functioning low, plus I struggle with all the ASD criteria of social impairments, etc. I drastically underperformed in school growing up because I didn't get any of the support I needed. Eventually, I got a BS and an MS in math, but I could have become so much more; I am concerned how much blame he'll put on himself for not doing things differently.

For anyone who's been in a similar situation, I'd love to hear your thoughts.

I'm not conflicted, and I don't think anyone should be blamed at all, but I do think of what could have been.

For example, I chronically underperformed. By when I was in 7th grade, I was doing so poorly that the school out me on a program in which I had to bring a form around to each of my teachers every Friday and they would give a mini report card for that week. The teachers kept on top of me, reminding me of assignments, etc.
My grades went through the roof. My mother would tell me "you should be ashamed of yourself, needing the teachers to stay on you like that." After a full quarter, my grades went up and they took me off the plan. And my grades went right back down. My mother would always point to that quarter and say "see, you can do it! You just don't want to, you're lazy."

My mother and father divorced when I was 3 and I lived with my mother after that. Will my father think to himself "oh my god, if we hadn't gotten divorced, I would've been in the home and could have made sure he got what he needed", for example.

I absolutely do not believe anyone is to blame, not even my mother. They did the best they knew to do.

As for why I want to tell him. I have considered not telling him. But my family has always been very open, it goes against everything I know to keep it secret. If I do keep it to myself, someday when he's gone I think I'll regret that. And, the big reason, everyone in my family has told me I'm rude, self-centered, cold, etc over the years. I never understood why they were saying these things, but they found my words and actions to be inappropriate. People have gotten cancer, and I wouldn't seem to engage emotionally, offer encouraging words, etc. this diagnosis would help explain that and help them understand that what they see me do on the outside is not a reflection of what I'm thinking and feeling inside. In other words, maybe my father wouldn't feel like his son turned into a self-centered arrogant jerk.

I am in your father's age group. I was undiagnosed for nearly all of my life. I also have an adult child in your age group who, like me, was born and grew up undiagnosed. We are both aware of our status on the spectrum now.

Most people in her age group and mine did grow up unrecognised, blamed for things that we could not help, as if they were personal failings or even wilful behaviour. So when diagnosis or self recognition occurs, it may also come together with an inner reconsideration and recognition of a well of stored, painful and unhealed hurt. While there is relief - wow, that's what it was - there is also regret. The "if only I had knowns". There is grief for the losses of the past - potential blocked by ignorance, time wasted during which there may have been a lot of past blaming the self, and/or blaming others, and/or being blamed by others. The pain of this can be acute and is a not uncommon stage following late diagnosis.

What we can't know is in what way things would have been different if they had known, if you had known; equally, I am not convinced, as a parent, (and also once a child parented by two adults who imposed their view of how things should be on myself and others generally, who were committed to their view of life and how to live it as the only possibly correct one, and who imposed that on all others in a dogmatic and pigheaded superior way) that parental figures always accomplish the "best they could" standard of parenting behaviour. Some do, some don't, some miss that bar all together. As adult children of narcissistic parents know, some parents want a child's success to flaunt as a tribute to themselves. So it's complex and these past misunderstandings and missed opportunities are painful to experience. They do tend to get better after we have had mourning period, however. And those who truly love and want to understand us and who essentially believe in us, as people, whatever we have achieved or not, are going to mourn with us.

Given your father's situation and illness, if you chose to tell him, will he benefit from that and will he have time to not only mourn with you but still be around to share the after-grief phase too, which is potentially a gentler and more unifying experience? Not knowing the nature of the emotional bond between you and him (whether it has typically been characterised by core themes of conflict and mutual disappointment or loving mutual acceptance, respect and appreciation) it is impossible to answer your central question.

It would be very unusual for someone at your current point of knowing not to have a legacy of conflicted and unresolved feelings about the past hurts, misunderstandings, unfairnesses, experiences of being painfully misjudged. This is a huge decision and you could consider perhaps getting some professional counselling support - perhaps from a counsellor who is experienced in issues to do with major losses and unhealed pain, as you find your own way to the best answer for the overall situation and context.

The simpler possible answer seems to me to be that if there is and always has been a strong core of love and mutual acceptance between you and your father, regard for each other as persons as well as family members, then that bond will not diminish now, should you choose to tell him. He may want to wrap his love around you even more, and share your pain. Conversely, if the background has been one more characterised by mutual conflict and denial, then telling him will most likely have consequences which involve more conflict and denial dynamics between you.

You are the only person who really knows what the core context is, and there may be aspects of that you are not yet reconciled to yourself. This is big; take your time, perhaps consider the intricacies of the situation with a safe other who is removed from the situation, who can help you weigh up the factors one way or the other. No-one here can know enough about the past history and overall relationship dynamics to answer your question definitively one way or the other. It's a biggie, take your time.

Instead of blaming himself, his reaction might be "So there's a reason you were so hard to raise!"

Then also, a parent might start wondering if they too are autistic.

I'm in the same position. I'm 28 years old and just recently diagnosed. Your high school experience was exactly the same for me, I even had the vice principal of the school come to every single one of my classes to check I was doing my work. Which I usually didn't. I got all the same comments from parents and teachers that you got. It was a horrible time in life.

I thought about informing my parents and asked my psychologist what he thought about it. He's response was "you're an adult, why would you need to tell your parents?". I think he is right. We are adults now, the past can't be changed and we don't want anyone to start blaming themselves for what could have been. Everyone at some point in their lives wonders how their life could have been different in some way, spectrum or not.

These were my thoughts, of course you will make your own decision but I hope this helps!

I would tell him. I would also explain to him how Autism works. It is nobody's fault. Even though it is genetic in many cases, some cases may have environmental factors attached that make people have traits and symptoms that are like Autism, but if you are born Autistic, it is genetic. But even then there is absolutely nothing anyone could have done or not done that could have made that different. If he does just go into the blame mode, just work it through with him and reassure him. Show him articles and videos that teach where Autism comes from and what it really is and keep reassuring him how much you love him and how grateful you are for him. That might help. But I think you should tell him. I think it would be better for him to know than to not know.

I'm in the same position. When I was diagnosed I chose not to involve my parents because my father had just had a stroke and there was a huge amount of stress around for both of them. Fortunately I had people who've known me for many years who filled out reports on me from their perspective. Since then my dad has imporved massively and is almost back to normal but I am afraid to tell them. I have several fears about this:

1. My mum was trained in child development as a teacher at the time when autism was thought to be due to refrigerator mothers so I worry that she might still hold this wrong belief and feel upset and blamed.
2. I also worry that both of them might feel accused because I wasn't diagnosed as a child. Whereas the truth is that a female with high functioning autism would have never got a diagnosis in those days.

The difficulty with this for me is that when people think things that are wrong I don't know how to put that right. I don't have the social / language skills for it. It's the thing which trips me up more than anything else.

I think for me it would be right to tell them but I don't feel able to do it.

Thank you everyone for the thoughtful comments, it's very helpful. I'm glad I started this thread, it seems I'm not alone with this dilemma, hopefully others will find your thoughts as helpful as I do. All of these different perspective have left me weighing two things:

1) positive: I tell him, it might make him feel less disappointed in my seemingly cold, selfish and unsupportive actions going back 20+ years. It might allow him to conclude that I do care about people, I do empathize, but I just don't show it outwardly.
2) negative: he could second guess himself, "what if I had done this different?"... Or "I remember that day I yelled at him and called him stupid." (Yes that happened, though it was rare. I remember it and I'm sure he does also. Although, diagnosis or no diagnosis, I bet he feels bad about that regardless.)

I'm leaning toward sharing with him my IQ and executive functioning percentiles (99.8 and 2 respectively) and explaining how this imbalance is part of the reason I've never fully reached my potential. I'll tell him that there is more, and it's very positive for me, I feel like it's been a rebirth to have this knowledge going forward. I'll tell him that I'm like a computer with a powerful chip, great RAM, and huge hard drive, but my operating system (executive functioning) is defective and my interface and external ports (social instincts) are not compatible with most users or peripherals. I think maybe I could just be honest and tell him there's a name for this, but there's no need to share it right away. There are so many misconceptions and stereotypes that if I tell him the name of it right away, his mind will immediately start thinking of those misconceptions, rather than thinking about the struggles that I've exhibited over the years. I'd rather let him ponder his observations and experiences with me throughout my life without giving him the label, and then, after several days/weeks/months, with those images firmly in his mind, I'll tell him what it's called. (I'll also add that in the 1980's, nobody like me was being diagnosed, so he can't feel guilty about that.). I think this may help him redefine "autism spectrum disorder", replacing whatever stereotypes currently define it for him.

I think that stressing over what their responses might be is more destructive than just telling them and giving them a chance to respond. You can work through whatever their responses are and cross those bridges when you get there. It can be a long, hard road and sometimes painful but it could also go very well. If you just sit around and stress over what could be you will cause an added tension that might not even be real. If you tell them and it goes badly, at least you are dealing with honest, real feelings and those can be worked out in time. If you must have stress, at least it should be based on reality rather than on speculation.

And you never know, they might be more informed than you think. Just because you were young when refrigerator moms were the assumed cause of Autism does not mean that your mom might not be better informed now. I have talked to my mom about things and was shocked about how much she knew about them that I did not realize that she knew. The funniest wake up call for me was how shocked I was when I told mom something about the Rolling Stones and she knew much more about them than I did! So I would tell them and give them a chance.

I haven't informed them and it's been some time since, I don't know when I will, my mother knew I was gathering a lot of in depth information for visits to my GP, if she asked me where those discussions with my doc went I'd probably inform her. I don't really converse with them on mental health as they don't particularly fathom the extent of it or the topic as a whole, my old counselor, my specialist and my gp understand why it's not something I'm comfortable with, I've spoken with my siblings about it and they are very supportive and also know me quite well and my difficulties in existence, I'll probably speak with my mother eventually but I've never been too close on an emotional level with my fathers even though they're good folk.

I'll be 59 in a little more than 3 months. I'm in the position that both my parents are deceased before I was diagnosed back in 2012. As for my brothers, they're of the opinion, with the exception of my youngest brother, who has 2 low-functioning and mostly non-verbal children, that my diagnosis is bullsh!t, including the latest diagnosis of PTSD. They feel that there's no such thing as different neurology, that my youngest brother's children are mental ret*ds (their words, not mine) and permanently belong in a group home, locked away from everyone for the rest of their natural lives. Unfortunately, my youngest brother and his wife are heavily involved with DAN, believe that autism is caused by vaccines, and will try anything to cure their children. When I try to tell them that Wakefield's research was fraudulent, I became persona noon grata with them. To them, and most of Dad's side of the family, I'm a leech and don't deserve to live.

What do you want to happen as a result of telling your father? Do you want to tell him because the dx explains things in your past to you and you would like him to have that explanation as well, do you want support from him in handling this, do you want to tell him because you always thought something was wrong and he never did, or is this just a knee jerk reaction because when we get a diagnosis like this we are supposed to tell them?

Knowing what you want out of the conversation is the most important thing and will give you the answer you need about telling them.

I was diagnosed in middle age after seeing a therapist for something else. Over time she suspected, told me, asked if I wanted to look into it and then made my appointment when i did. By that time I had learned to live with it and pass as NT (I thought "normal") and I just thought I was weird or selfish or something. I was married and had four kids, had had jobs and relationships and had become an extrovert and very good at socializing when i wanted to be. I had no problems from the AS really, except meltdowns when I would get overwhelmed, and that isn't something anyone else can handle for me. I told my husband, mentions it in front of the kids once, and that was that. Not their business really. My mother was batshit crazy and would have used it against me in some martyr syndrome borderline personality dsorder narcissistic poor me my daughter is autistic so I have to do things for her fest that she would swoop in to orchestrate by suddenly seeming concerned and helpful when I was the one doing things for her since her retirement and also running a home and taking care of my family very well and in need of no help. So I didn't tell her. That's just me though and I doubt your parents are like that. At least i hope they aren't.

I didn't tell friends nor keep mentioning it to my husband and kids simply because of the stigma of autism even though the kids knew a boy with AS, but he was kinda weird even though he hung out in their circle. I have enough weirdness on my plate, I had no reason to add to it. I only told a couple of close friends who I kneeling start talking down to me and suggesting we see cartoon movies when we went places and who wouldn't think that I had managed to hide being mentally ret*d from everyone all these years. And people think that sometimes. The stigma of autism. One friend is my doctors wife and she knows about AS, one friend knew me in high school before I learned how to act and she was one of the people who spent lots of time teaching me obvious things and practicing normal interaction with me and i thought she would like to know because if she didn't think that then why would she now, and the other one hasn't ever read a non-homework book in her life and isn't very smart at all and loves the fact that I am and she just calls AS "that thing you got that makes you like smart stuff". I love her and her intelligence isn't her fault. She Has more street smarts than I do and is very empathetic and understanding. Nothing is wrong with her, she just liked boys and weed more than books. She. Certainly couldn't judge me because I didn't judge her over her meth or heroin addiction. So those are the people I ltold and why

I'd urge you to keep it on a need to know basis and with your family your need for them to know counts as well as if they need to or not. Think about what you want out of your parents knowing and also decide if they are likely to react the way you need them to. If they react badly or in a way that gives you more stress then you're better off not telling them. All I can say is compare what you need from them with what you know they are likely to give you and then go from there based on the odds and your comfort playing those odds.

Good luck.

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