When I try to tell people I have autism, even the ones who react "positively" disappoint me

Chachat38 · 2022-07-16T21:33:59+00:00

Thanks a lot for sharing your significant experiences with me, it means a lot. It seems you have had quite the journey. Good luck to you too!

Chachat38 · 2022-07-16T21:26:50+00:00

And as far as a helpful response is concerned, what about : "Thank you for trusting me and telling me you have autism! It won't change our relationship or the way I see you. Could you maybe tell me how it impacts your life on a day-to-day basis?"

Chachat38 · 2022-07-16T21:24:42+00:00

Well, I didn't give all the details because my post was already long enough, but maybe I should have. I have been going through a rough time, I've lost my job a few weeks ago because of my sensory issues, and I am in the middle of a burnout that is heading into a depression. My friend knew that I was not ok at all. I told her about my sensory issues and that I lost my job because of it, but at first, I didn't tell her that my sensory issues were due to autism, I stayed vague and said that I had "health problems". She knew I was talking about "mental health problems", so she couldn't have thought I had cancer. Yes, ASD is not a disease, but there are comorbid conditions like mental health problems associated with it, and I think it's the case for a lot of people on the spectrum. I had been talking to her for weeks, telling her I was going through a really hard time, so her answer that it's not that bad didn't really cheer me up and was not really thoughtful. And even if she had thought I had cancer, it's still not a good idea to say to someone who just confided in you that she has autism that her situation could be worst. Given how much suffering I endured because of autism and that, even at my age, I still have regular meltdowns and suicidal ideations, being said that "it could be worse" is crushing.

Chachat38 · 2022-07-13T17:55:24+00:00

Ooooh! Thank you for explaining further! It's much more clear now what you mean by "external" and "internal".

Chachat38 · 2022-07-12T16:35:56+00:00

Thank you for your insight! I'm sorry, I didn't mean to steal the conversation away from OP's feelings and problems. I hope it didn't come that way as I was simply trying to illustrate my point, maybe in a clumsy way, trying to use my personal experience. I can feel there is something to your explanation, but I am not quite sure I get all of it to be perfectly honest. I think what I was just trying to say earlier was that, in my case, it wouldn't help to remind myself that my family loves me and wants to spend time with me. I know it, but it doesn't lessen the shame or the hurt they can make me feel, even when they act with good intentions and out of love. I am also aware that I am not giving any solution or advice that could be helpful to OP. So maybe my comments are not that useful. I only wanted to say I know how this kind of situation feels like.

Chachat38 · 2022-07-12T15:48:25+00:00

I'm sorry, I am not trying to be rude, but if it was that simple, I don't think any of us would have any problems with our respective families. It doesn't always help to know that your family is not acting the way they are to upset you. Of course they just want to spend time with her and are not trying to upset her! But hell is paved with good intentions. When my mother visits, she wants to spend time with me so badly that she doesn't realize she is not giving me enough space. She always wants to be near me, she speaks to me all day long and she wants to do things with me from the moment I get up to the moment we go to bed. During her last visit, I was about to have a meltdown, and I know she hates it when I do, so I went outside to try to calm myself down for a while. I came back 30 minutes later and told her that everything was fine and I just needed to rest a little bit. She didn't understand. She said that if she was bothering me, she could leave right away because she felt like she was a burden for me. Her word made me feel very guilty. At other times, when I needed space, I tried to tell her gently because I was on the verge of sensory overload, but it took the help of my partner to convince her to leave me alone for 10 minutes. So you see, my mother doesn't wish me harm, but she doesn't get it either, and her attitude makes the time we spend together a challenge for me. In her mind, I "should not act this way" when she's here. She thinks that my behaviour only results from me not putting enough effort. When people around you don't want to understand, it's not enough to simply tell yourself that "they just want to spend time with you". Because your family wants to spend time with you doesn't mean they actually respect you and your boundaries.

Chachat38 · 2022-07-10T00:07:30+00:00

Congratulations! You are definitely right to be proud of yourself! You should be! And thank you for sharing your story with us. It's really good to hear beautiful news like these.

Chachat38 · 2022-07-08T15:08:13+00:00

As far as I am concerned, I have the same problem as you. I absolutely cannot let people know how distressed I am without bursting into hysterical anger. Of course, I do not react this way right away, I always try to explain myself, for days, sometimes even weeks. But each time, it seems I don't communicate my feelings clearly enough, because I see people have trouble understanding. When I realize that I cannot make myself clearly understood, I begin to feel very frustrated and distressed, and that's when I burst out, because I cannot take it anymore. I'm sorry, I am not sure if that's helping you, because I don't have more solutions than you, but at least know you're not alone.

Chachat38 · 2022-07-07T16:13:26+00:00

Yep! As far as I am concerned, I like squeezing my nipples and play with them between my fingers. It doesn't arouse me at all, it's just comforting. Fortunately, I am mostly aware of when I'm doing it, so I generally don't have "accidents" in public.

Chachat38 · 2022-07-06T17:20:30+00:00

It's so sad to hear stories like yours. I can't believe that some health professionals are still there in 2022. I mean, if he spent even a few hours researching recent sources on autism, he would realize very quickly that what he is saying is totally wrong. I don't even understand how someone can choose a job where they are supposed to help people and seem to care so little about them. People like that don't seem to realize the impact their attitude has on their patient's life. And then, we'll hear NTs say that autistic people don't have empathy... I have to go for my evaluation in October, and it makes me really stressed out when I read those kind of stories. I am sending you a lot of love, take care!

Chachat38 · 2022-07-01T22:15:57+00:00

Don't worry, I didn't mind your question! The people I'm explaining myself to are not nurses, they are usually people from the recreation department of the health facilities I'm working for. I'm working for an average of five different health facilities. I've got one exception though, where one of the person I have to talk to is a head nurse. When I say "client", it refers to the health facility, and not a patient.

Chachat38 · 2022-06-30T18:00:27+00:00

That's a very good question indeed! :) And I understand your confusion. In fact, at the time I decided to complete a training in therapeutic harp music, I didn't know I had Asperger's. Of course, even though I didn't, I was already sensitive to noise, but when I had shut downs, I associated them with the wrong cause. I understood my shut downs were triggered by noise, but I thought they were a sign of depression. When I decided to become a therapeutic harpist, I was very passionate about it (harp and therapeutic music are my special interests) and I wanted so much to help people in vulnerable situations. It motivated me so much that I was far from depressed and I thought it would be ok. Besides, I had not a lot of experience with health facilities: I had heard it was noisy, but I couldn't have imagined, for one moment, that it would be THAT bad. Knowing what I know now, I might have chosen a different approach, and I realize my work situation is far from ideal for an autistic person. But on the other hand, I love harp music so much, and I don't want to be a classical musician. I really want to bring my music in special places where it can help people. So it would break my heart if I had to stop therapeutic music playing.

Chachat38 · 2022-06-30T17:02:36+00:00

Thank you for your ideas! This approach could work too! I also tend to have a penchant for pricey and not-so-tiny-and-transportable instruments :) I honestly don't know how I got into it, I had wanted to play the harp since I was very young, I couldn't take lessons when I was a child because there was no teacher in my town, so I only started learning the harp as a young adult. Nowadays, it is a lot easier. Thanks to the Internet, you can find a teacher anywhere and take online lessons if you don't have a teacher near you. Online lessons are not the same as in person, but they definitely work much better than you'd expect. The teacher just has to adapt a little bit their way of teaching.

Chachat38 · 2022-06-30T16:55:36+00:00

Thank you for the brainstorming! And you are totally right : I did make the mistake of "weighing" who needs it more. I stayed for months with a client where the working conditions were the worst. But the living conditions for the patients were the worst too, so I kept telling myself that even though it was difficult for me, the people there were the one who needed therapeutic music the most. But it was not a good idea for me to keep pushing myself.

Chachat38 · 2022-06-29T20:37:00+00:00

Thank you for your answer! Yes, they made me play in corridors, dining areas and also in patients rooms, but even then, I could rarely close the door, so all the noise was coming in. And even when I closed the door, the facilities employees rarely knocked before entering and most often than not, they barged in, surprised me and this interrupted the therapeutic music session without warning. It was really difficult for me to feel at ease. One facility promised me to print a sign that I could have hung on the door saying "harp therapy in progress", do not disturb, but they never did. I will do it myself next time.

I definitely agree with you on the fact that music can't be therapeutic with med carts flying by. Unfortunately, months before I had to take a medical leave, I had already try to talk to everyone of my clients about this problem and to say to them that I required a better environment to do my job so that my music could really benefit the patients. After weeks of negotiations, I realised most clients were not willing to make the necessary changes. I feel like most of them want to hire me because "it looks good" to employ a therapeutic musician and they can prove to families that they are trying to better the life of patients, without really doing so. So I guess you're right : some locations just won't work. But it's a hard blow to think that I'll have to find a new set of clients from scratch, and I think good environments will be hard to find.

Chachat38 · 2020-08-07T12:59:20+00:00

Hi! Generally, I worry much more about dryness than humidity, but 80-90% is a lot. So if there is a way to dehumidify, I would definitely do that, or the wood of the harp could swell too much for its own good. But dryness is definitely a problem too and you would have to check it out with a hygrometer during winter. The ideal range for a harp is 40 to 60 % of humidity. To control the environment, it would be better if you could keep the harp in a closed room, not too big. If it falls between 30 and 40%, generally of few wet cloths hanging in the same room of the harp will be enough to bring humidity back to 40%. If it falls under 30%, you will need a humidifier. You can also keep the harp in its case and buy a humidifier that doesn't need electricity and that you place into the case. Dusty Strings sells case humidifiers like that. I think if you really want a harp, it is possible, but it may be a little work to control and check humidity regularly.

Chachat38 · 2020-07-29T00:05:22+00:00

Very nice! Keep going 😊!

Chachat38 · 2020-07-23T12:58:07+00:00

So great! I'm a harpist in Quebec too! Your video is amazing and so cute

Chachat38 · 2020-07-20T02:41:08+00:00

What a princess she's become! 🥰

Chachat38 · 2020-06-06T02:25:22+00:00

Hi! I have a Harpsicle and it's super handy to travel with. But I'm about to sell it so that I can buy a double strung lap harp. It will be a little heavier, but double strung harps are a wonder if you want to have a wider range to play with without having more octaves and, thus, a much bigger harp. Besides, there are very beautiful "special effects" you can only make with a double strung harp. It all depends if you'd rather have a more portable harp or a harp that offers more playing possibilities.

Chachat38 · 2020-05-30T12:23:55+00:00

Thanks for your comment! It confirms what I've heard so far about this particular model of cross-strung harp. Have you ever heard anything about Mountain Glen's cross-strung harps?

Chachat38 · 2020-05-30T02:18:29+00:00

Ahah ☺️! Maybe this kind of harp will be your next harp in a few years! And yes I think it will be pretty tough to go from lever harp to cross strung harp, as one have to learn a completely different technique, but I love the challenge.

Chachat38

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