How I took my diagnosis vs my daughters...

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So over in the member only section I posted a thread about how I wasn't taking my diagnosis well. I was diagnosed as an adult after my daughter received hers. The docs for my daughter's school district, my wife, my marriage counselor and primary care physician all told my that I should get screened for ASD. I thought they were stupid for saying so.

After about a year of arguing about it I finally agreed to go in for a screening. I was sure that I wasn't on the spectrum. Not like I was expecting the diagnosis to be "coolest guy ever" but as the doctor sat across from my wife and I to go over the results I felt like the floor dropped out from under me.

Hearing that I was "obviously on the spectrum" was a shock. I didn't take it well. Not depressed but it was a much deeper and heavier experience than I was prepared for.

My reaction to my daughter's diagnosis was total different. I was relieved. I was happy that she could get an IEP and not be subjected to the penitentiary style classrooms of childhood.

I'm starting to realize that part of my negative reaction to my own diagnosis is that I realized that my daughter is going to still have to live in the real world. Intervention programs and therapies are nice but she has to look forward to all the horrible of teen years(which is hard for everyone ASD or NT) and there will always be horrible people that will go out of their way to make some else's day worse.

I made it through life okay, it's been rough, but I've done a lot of things most NT's will never get to do either. It's not like I wasn't letting my ASD hold me back ( I didn't even know I had it).

I'm not going to let hold my daughter back. I'm not going to use my daughter's diagnosis to as an excuse to hold her back.

So after all these tangents back to my point. For all the parents with a kid on the spectrum whether you are as well or not. Autism isn't just something happening to your family. Autism is something that your kid is going through.

Your job is to help them through it.

Change the subject to childhood and I think that's a very concise description of parenting: "Childhood--your job is to help them through it."

And it makes sense to think of autism that way too, as long as you aren't thinking of it as a finite thing that they will get through and then it will be over. Autism seems more like handedness. You are a lefty or a righty or ambidextrous and you better get used to it, because that's the way it is. Neuroplasticity means you can change a lot, but you are not going to some how just move on and leave it behind.

It's good to hear that commitment to caring for your daughter. I hope things go well for both of you.

I think our kids benefit from growing up with a gift we didn't have a chance to receive: understanding. It doesn't eliminate all the bumps, but it definitely smooth's out many of them. That is what I've seen with my son, now 18. We used his diagnosis to shield him when he needed it, but not when he didn't, and that safety net while in the vulnerable process of growing up was a huge help. He has no regrets, but is now pretty much standing on his own, no longer seeking accommodation. He starts at one of the UC campuses this fall.

I think that part of your reaction may be based in the same thing that is keeping my son from pursuing an adult diagnosis (he only received a school use one): it is very difficult to process if someone tells you that you are not who you think you are. For my son, his identity is wrapped up with being ASD, and he is scared of someone telling him the diagnosis was wrong. For you, it was the opposite. You base a lot of decisions, expectations and interactions on that image, so I would expect a person to feel like the ground has dropped from under their feet when they lose it.

For me, reading about ASD in connection with my son made me realize that I must have it to some degree. But somehow it fit into the self-image I already had, so it never registered much more than an "interesting" to me. But it sounds like it was very different for you, and I wish you the best of luck with reconciling your feelings on it and moving forward.

My experience is a lot like DW_a_mom's. I do not have a diagnosis, but am definitely BAP. Realizing it really only made me say "OOOOOHHHHHH! That's why my life has been this way!"

I am pretty sure my dad is diagnosable. We have never discussed it, but I do sense that he has some degree of realization that he probably is on the spectrum. If he were to get a diagnosis, I think he would react like you. He has no problem with either of my kids' diagnoses. He does not think less of them, or think it is even particularly problematic. He is not embarrassed or ashamed. However, no matter how positively he sees my kids, I don't think the positive attitude would extend to himself. Again, I haven't ever spoken to him about this, so I am only making my best guess as a result of knowing my dad my whole life, but I think for him, part of what would make it hard is that he has never seen himself as having anything "wrong." He has always interpreted the way his life has gone as "someone else's fault." Not that he walks around blaming anyone for anything, but I don't think it occurred to him that HE was the cause of some of his difficulties. My son is like me. He knows of all of his diagnoses and he was relieved when he learned them. He knew he was different and he was happy to know what "it" was. My daughter is like my dad. She still doesn't know her diagnosis. I think it is going to be upsetting to her. As far as she is concerned, she is perfectly fine...it is everyone else who has a "problem" LOL!

None of us use our membership to various points on the spectrum as an excuse for anything. If anything, it is just a frame of reference for problem solving.

I think my kids are both lucky that I have my own wonky wiring...I "get" them in a way their father can't. He loves them dearly, but he will never understand, for example, how it is possible to do your homework every night and never turn it in. I get it. Even though my daughter doesn't know her diagnosis, she is "in" on our joke that we are all 3 wonderfully weird. She does know that I understand about her that other people don't.

There is no reason to be upset or ashamed that you never knew this about yourself, if that is part of what it is. People, NT or not, vary in their degree of self-awareness and I don't think of it in terms of one way being more "advanced" or better than the other. It is just a different way of being. Some people are naturally inclined toward self-awareness and others are less inclined. Some people live in environments and have experiences that enhance their natural inclination. Some people live in environments and have experiences that encourage development in the opposite way. Plenty of research has shown that high self-awareness is correlated with increased incidence of depression. Like most things, there are good and bad things.

Just remember that the more your kid sees you accepting yourself, including your diagnosis, the more likely he will accept himself. There will also likely be a day when knowing that you have similar issues will help him. My kids see me as very successful and happy. It helps them know that they can be happy and successful too, even if they are "weird"

Wow thank you all. As I continue to process this event I think it's that I just don't like admitting that there are things I'm not the best at. And that those things I'm not good are are things I always called "stupid" or "lame." obviously it was all just to cover my feelings of isolation and pain.

Self-discovery is sh***y journey.

Another part of this, I think, is that discovering this about yourself can pull the scab off some very old wounds. At some level that you may not even be aware of when it starts, you are back there, in the moments when being different was most painful, reliving it. I think it's pretty hard to escape the biographical review, where you go back through everything thinking, "so that's what was going on!"

Even if you consciously take this in the most positive way possible, that is a deep well of pain to dip into and your subconscious goes there--at least, this has happened to me. I am still consciously positive and I can take care of myself, mostly, and that helps. But I have had some really, really bad dreams about this. And there are moments when I remember specific things that people said that hurt and keep on hurting.

The metaphor that came to me for the realization was that it was like Neo's awakening in "the Matrix" and I was thinking of the degree of shock at the difference between what one believed and what turned out to be true. But the other reason for choosing that image is that the world Neo discovers himself in is much nastier and more dangerous than he had believed. I think that some part of my emotional being did experience it that way. I was living in my nice delusion and have found something hellish. It's like finding your own Bluebeard's Chest or Pandora's Box hidden away in your memories.

While one can strive to be positive and make the best of any situation, I think that dark stuff is psychologically important and needs to be given it's due. I think something liberating may lie on the other side, but it feels like a perilous journey.


Yes, this is important. I wish I was not impaired in any way and could show my kids a perfectly functional person, maybe the next best thing, an artful dodger who can find another way around the obstacle, is the best thing to model for them. I really agree with everything you have written, InThisTogether and DW_a_mom, but something in the way cooksp53 has expressed his painful journey resonated deeply with me and that feels important and like something that has to be dealt with.

Maybe this is all just externalizing some inner problems I am having. Sorry if I am going on about something off the mark.

Adamantium, I really appreciate that you have been on this forum to help me find my way through this very new situation. InThisTogether and DW_a_mom you have also made some good points that I wil try to remind myself of thank you.

If it's any comfort, the teen years don't have to be awful. She will be receiving support and understanding from a young age that, if it works, might just have her in a very different place than where you were.

I would say my teenager struggles much less than when she was younger. I hope that is the case for you as well.