I can think of no more meaningful an example of acceptance than my mom’s journey to better knowing me and embracing my autistic identity. So she was my first choice to interview for this issue! It was a joyful conversation. I am so happy to share it here!
Danny: Hi Mama!
Mama: Hi Danny!
D: I am so excited to interview you!
M: I am so excited to answer!
D: You are so cute. So I want to ask a bit about the theme of this issue, From Awareness to Acceptance. I feel you have come far in your journey to accepting my autistic identity.
M: Yes, you’re right, you’re very right.
D: I am so curious to know more about your perceptions. Shall we start?
M: You’re a great interviewer!
D: How did you end up with such an amazing son?
M: Hehe! Oh, well, hmm… as Papa would say, look at us [parents]!
D: Seriously, how do you feel about me being autistic?
M: It has changed – until you became fluent with the letterboard, I was pretty pessimistic and was always so sorry for you. But after you became fluent and let us see inside you, it really surprised me in a very very wonderful way that you have your beautiful mind, and you weren’t a human tragedy. No, you have your own beautiful world, and you’ve been wandering around in it, so it doesn’t seem all your 35 years was a waste, you’ve been having such experiences. And I can tell the way you write poems and the way you’re so cheeky – it just delighted me to no end.
The only thing is when you’re dysregulated, I’m so sorry for you. You can’t be your wonderful self. Otherwise, I’m delighted. Just never expected it would turn out this way.
D: Wow, I love it!
M: I love it too. I love it so much, Danny. Just… I’m really loving it, Danny. The only thing is the dysregulation – we have to do something about it! And we can live happily ever after.
D: Mama, that means the world to me!
M: That’s wonderful. It means the world to me, darling!
D: How has your understanding of autism changed since I gained my spelling voice?
M: Before, it’s not Dr Rimland’s fault or anyone else, but “autism is a disease, got to be cured, once you cure it everything is ok.”
Once you gained your communication, you showed me such a beautiful world and everything aligned to it. I saw that autism, on one hand, is a marvel, it’s almost like a miracle. It’s not something you want to manipulate away.
So, let it be, and the only part I really feel that should be removed from your life is the dysregulation – it’s not helping you, it must be such torture for your beautiful mind. So if “autism is a disease,” dysregulation is the only “disease.”
It’s such a beautiful world you’ve nurtured in yourself, and that’s such a beautiful side not many people talk about. Just an eye-opener.
D: Geez Mama, you are trying to make me cry!
M: I’m crying myself. The world is wonderful. This experience is worth living.
D: So you already answered this, but: What has been the hardest part of accepting my autism throughout my life?
M: When you were diagnosed, I knew autism is a big deal, but I didn’t know what exactly it was. I was trying to prove that you are not inferior, maybe even superior to others, and I used to get all sorts of puzzles and you did so well! But the speech – the little speech you’d gained just faded away, and then you started to stim and stuff. I was always determined to get you out and “cure the disease” or whatever I can – I was determined to do that.
But you were always such a sweet boy and that really helped me just keep going. And then, after puberty, you started to get – when you started to get aggressive, my world got really dark and just… couldn’t … there were all sorts of dark thoughts.
But you weren’t all that bad and somehow you got out of it, thank goodness. And then you started to communicate, and that’s the end of my hardest part. And now just the dysregulation.
D: Before, how did you feel about my life and future?
M: My expectation wasn’t high. I wanted to live with you as long as I can, and probably then you need to go to a group home and you might have some fun there, but never ever thought of your future dreams or anything. As long as you can be comfortable and not have a hard time, I thought I’ll be happy.
But now, you opened up your world, so my dream for you is expanding or… exploding! You have such potential. I don’t have any set idea – like you write a marvelous novel or poem or something like that – but I know somehow you will make yourself known to the world and make the world a better place somehow. I believe in you. You have such conviction of right and justice.
D: Oh my goodness, I am so moved by this!
M: I know you’ll do great things. After all, you’re my son!
D: Right! Are you sad about my limitations, like I probably can’t live on my own, etc.?
M: Well, it’s kind of a shame, but there’s always alternatives. You’ll find the best way, won’t you? Like live with Tara – what about that?
D: Yes please!
M: What else, what limitations… I think the main thing is the dysregulation. Without so much dysregulation, you may not be totally independent, but more parts of your life could be independent. What do you think?
D: Maybe! I want to ask the next question: What is the best part of accepting my autism?
M: Gives me all sorts of dreams! And I don’t feel so much guilt – so, it’s not that I feel I did well, but I feel, my goodness, my son has really handled his difficulties so well. I always felt, “because he can’t talk, I’m not sure he is thinking,” and I was getting all so sad – but I was so wrong. You were think think think think thinking! I was always feeling so guilty, because I felt our actions caused it somehow, somehow I just felt I totally ruined my son’s life. That was the worst part of you being autistic, and the idea you didn’t have to suffer if we had been more careful somehow.
It still stays, but you turned around it so wonderfully, and I’m so proud of you. I’m dreaming what you’re going to do next. It’s really wonderful!
D: What is your hope for me?
M: The sincerest hope, now, is that you can regulate yourself so you can do what you want to do comfortably.
D: Me, too! How can other families learn from your experiences with me?
M: As I mentioned, it’s not a disease you just have to eliminate. It’s like when we were going to the Pacific Oriental Medicine center [for acupuncture for you], there was a guy who was sort of sitting in with the doctor because he wanted to learn about Traditional Chinese Medicine. He was working on, or he knew somebody who’s deeply involved in working on, autistic kids. According to him, it’s best not to totally fight against it – try to dance with it. Don’t consider it an enemy or disease, but something that you have to improve by working with it, and that’s the attitude we should take. That way, it’s easier for the parent or whoever is trying to do it, and easier for the kid as well, and seems to work better. Yeah, “dance with it” is a beautiful explanation.
D: I love it! What helped you learn to dance with it?
M: I always have to remind myself; I still often forget. But what helps is the improvement I see from it – your reaction. And your communication now – I can know if I’m dancing with you or against you from your feedback. It helps definitely. I don’t have to guess for myself. I can learn your reaction.
D: And how does “dance with it” relate to our progress as communication partners?
M: At first, because English is not my native language, I got nervous, especially feeling like I don’t retain the ideas or the correct spelling. I got nervous, so I was not dancing with you, I was kind of holding your movements back almost. Then I felt, I am what I am, and I shouldn’t try to pretend I’m your teacher because that’s not me and I feel so nervous – but the one thing I shouldn’t be is nervous! I have to dance with you, right? I have to be relaxed and connect with you. So I decided, okay, I can’t spell so easily, but we can read together and we can progress together. And that’s “dancing together.”
D: It is fun to dance with you!
M: Oh, thanks! That’s great.
D: Last question: What is your favorite small thing you’ve learned about me since I became fluent with Tara?
M: Hmm… small thing… like your cheeky humor. I love it! Like the early stages [of your fluency last year] – your inside jokes with “tubs of butter” and “monkey” and all sorts of things. I never ever could have a peek at your cheekiness before. It’s amazing. Your personality – a bit of Papa’s side you certainly have!
What else… and I can feel more that you really care about me from even small actions. The things you do – like deciding on your own to pick up dog poop in the garden every day so I don’t have to do it, as you explained when Tara asked why you started doing it – that sort of sweetness. I’m loving it.
D: Wow, amazing! This has been so wonderful, Mama!
M: It has been. Makes me cry. You’re doing all this… just amazing.
D: You are my most precious person and I love that we can get to know each other more and more.
D: Thank you so much for this beautiful interview!
M: Thank you so much. I just love it, darling.
D: Now… let’s watch Great British Baking Show!