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Old 12-12-2019, 12:43 AM   #1
Auror.
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Autism Spectrum Disorder

Hi,

I know I've been a bit weird and vague about a diagnosis I recently got for a while now, and after some events occurred, I just wanted to explain.

A while ago, my therapist human diagnosed me with autism spectrum disorder. I'm 31, so not a child, and given I've been in treatment a lot over the last 15 years, it was really not a diagnosis I was expecting. I've really struggled with accepting it as a thing and accepting that it is perhaps accurate because it is not something that will go away. I do have to admit that a lot of it fits better than the other things I have been diagnosed with.

I had paramedics come to our house and take my dog and me to both medical and psych units of hospital. My case manager human was the one who phoned for the paramedics and ambulance. They told them about the diagnosis, and told them my correct name and pronouns.

It actually made the care I got this time around extremely different and a lot better for the most part. The paramedics and medical staff let me communicate via writing and on my phone, they let me keep my service dog with me, and when they did things involving touching they tried to explain things first. The paramedics did not touch me at all other than helping me and my dog into and out of the ambulance, and even let us walk into hospital instead of being strapped down and wheeled in on the stretcher.

Things were not as smooth with the psych unit, but my case manager human says that they think having autism spectrum disorder as a diagnosis did help them better understand why it was actually safer for me to go home than have to stay and be admitted.

So anyways, I just wanted to be a bit less vague about this and also share how having it as a diagnosis has actually helped make other humans treat me differently/better. I have been really scared that being open about it will make me be treated poorly, but at least in this situation, it was a good thing.

Does anyone else on here have this as a diagnosis? Has it been helpful? Have you found any things that help with managing stuff? Sorry if I have worded anything about it incorrectly, I am still learning what is okay to say and not. Feel free to correct me.


edit - update and new question in post 19. seemed silly to make a new thread.


Last edited by Auror. : 18-02-2020 at 12:33 AM.


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Old 12-12-2019, 05:15 PM   #2
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Thanks for being brave enough to share especially as u are still trying to wrap your head around it yourself I don't know u that well but I feel really proud of u I don't have the diagnosis myself but I wish u lots of luck on ur journey take care

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Old 12-12-2019, 08:37 PM   #3
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I have it. It hasn’t been helpful, I wish I didn’t know/would grow out of it alas I’m stuck with it.

There are a few things I’ve found helpful, but only to a certain extent. I have a fidget cube and carry my earphones and chewing gum everywhere. I can’t stand noise, the fidget cube helps with anxiety related to it and the chewing gum resets my senses a bit since I can feel it, taste it, hear it, smell it and touch it.

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Old 12-12-2019, 09:50 PM   #4
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Oh, the chewing gum thing actually sounds like it might be helpful for me. Thank you!

I also am really struggling with the idea that it is not something that will go away too. That is why I had hoped they would remove the diagnosis and give me something else instead. But I guess everyone now seems to think it fits best.



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Old 13-12-2019, 07:06 PM   #5
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I know we've talked about this before but I've had similar experiences of my diagnosis being helpful. Obviously being autistic itself isn't always fun but I have found therapists/medical people tend to be a bit more understanding of why things are difficult. I think we've already talked about things I find useful so I'm not gonna put all of that on here but I wanted to say it's really brave to put this up and I'm proud of you.

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Old 13-12-2019, 09:39 PM   #6
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Thank you. <3

Has anyone else tried learning sign language (I know in the UK they use BSL not ASL like we would learn here) for times when they are nonverbal?

When I got sent to the psych hospital I had zero way to communicate with them because they did not allow me to write things or type things and I could not talk. It was really really scary. They were told that I needed to keep my phone to communicate since I could not talk, and then took my phone away as soon as I got there and yelled at me to talk and did not offer any alternative.



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Old 13-12-2019, 10:42 PM   #7
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I know Makaton (don’t know if that’s a thing in the US) but thats mostly because I work with kids so I went on a few training courses in order to help children to communicate. I don’t know if in the US providers have to be trained in it or not, but it’s a simpler version of BSL. I would imagine that even if Makaton wasn’t a thing there, you could still learn ASL and presumably hospitals etc would have people trained in it since they have to be inclusive.

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Old 13-12-2019, 11:42 PM   #8
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I am unsure what Makaton is, but I will look it up and see. Trying to learn ASL just sounds really hard and overwhelming. I guess maybe if I just learn enough to do like my name, pronouns, and then to say that I need to write or type maybe that would be enough to be effective? I am unsure. I might ask our case manager human.

The thing is, at the medical hospital they made an exception to the rule and let me keep my phone to be able to type to them. The staff humans at the psych hospital were told as soon as I got there to let me keep my phone since I could not speak (and my phone has no camera or wifi so does not break rules), and less than 5 minutes later took it away from me and did not offer anything else.



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Old 14-12-2019, 02:38 PM   #9
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Would communication cards be useful at all? You could make your own with the phrases etc that are important to you.





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Old 14-12-2019, 06:28 PM   #10
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Unsure what you mean. Like notecards or something?



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Old 14-12-2019, 07:12 PM   #11
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Yeah, like small cards of phrases you need/use most often.





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Old 14-12-2019, 08:21 PM   #12
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Hmm. I guess I could. 99.9% of the time I have been allowed to type things out with no issues. This was just abnormal where they took all of my belongings and my phone, so I imagine they'd have taken cards too. But I suppose I could come up with something just saying like, if I give you this card I need to be able to write things down or type things out. Maybe sort of like how I have business cards with the ADA laws about access for service dogs.



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Old 19-12-2019, 12:22 AM   #13
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If you google communication cards there are loads of ones you can buy or print that can say things like 'I am non verbal please provide a writing source'

I was diagnosed with ASD/SPD a couple of years ago, so I understand how strange it can be getting a DX as an adult. I'll be honest, I thought you already were diagnosed. I hope that doesn't seem rude. Xx




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Old 19-12-2019, 01:31 AM   #14
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I will have a google, thanks. Those do sound similar to the cards I have for my service dog. We see our case manager human on Friday and I have mentioned it to them as well.

Why did you think I was already diagnosed with it? I only got the diagnosis earlier this year.



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Old 19-12-2019, 08:54 AM   #15
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The way you think, I work with students with autism and I recognised your thinking patterns and explanations of things. I had assumed you knew!

I was also confused at my diagnosis but it also makes a lot of sense.

How did you find it?




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Old 19-12-2019, 09:09 AM   #16
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Hey!

I don't have the same experiences as you re:diagnosis but I am autistic and wanted to offer my point of view?

I am self diagnosed. Pofessionals and friends with degrees and experience working with autistic people agree that I am likely autistic, but due to medical bias* drs won't formally diagnose me for one reason or another. These are the same people who refuse to diagnose my PTSD even though it's debilitating.

(*Afab people and POC are ridiculously underdiagnosed. Some professionals believe that afab people *can't* be autistic. That is so incredibly wrong...)

When I figured out I might be autistic, it didn't feel like a diagnosis that won't go away. It felt like an explanation for this huge part of me that has always been there. It felt like validation for so much in my childhood that people labeled as "strange" or "baffling", or that I felt alone in (e.g. special interests).

That is just how I felt! It is, however, completely valid to feel uncomfortable with the diagnosis!

There are many of us who do not believe that autism is a "disorder" but rather a different "neurotype"(see: the concept of "neurodiversity"). That doesn't mean being autistic can't be disabling though(see: social model of disability).

(I'll echo J, I could relate to your way of thinking/writing, so I thought you must be autistic & that you knew!)



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Old 19-12-2019, 09:24 AM   #17
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Quote:
Originally Posted by Auror. View Post
Thank you. <3

Has anyone else tried learning sign language (I know in the UK they use BSL not ASL like we would learn here) for times when they are nonverbal?

When I got sent to the psych hospital I had zero way to communicate with them because they did not allow me to write things or type things and I could not talk. It was really really scary. They were told that I needed to keep my phone to communicate since I could not talk, and then took my phone away as soon as I got there and yelled at me to talk and did not offer any alternative.
That is incredibly unfair, why would they take away your only method of communication?! I am sorry you went through that X

I become non-verbal/non-speaking if I am unwell and/or am about to have/have just had a meltdown.

My phone has helped sometimes, although if I've had a meltdown, I sometimes lose fine motor function so I can't really type either, at least not without great difficulty.

I have been meaning to make an "alert/information card" to explain I am autistic, why I can't talk, what people should do to help me if I am unwell etc.

I have some very basic knowledge of BSL/Makaton and I want to learn more because of all this, but also because I have an auditory processing disorder so it would be helpful to be able to sign more. It could be useful to just start by learning useful signs - you won't have to commit to learning an entire language but could still communicate in an emergency? Stuff like "help" "please" "phone" and the alphabet, to spell stuff you don't know the signs for?



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Old 19-12-2019, 06:27 PM   #18
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Jodie, I am unsure what you are asking? Sorry.


Thank you Indigo. I like what you are saying about how it is a thing that has always been there, just now has an explanation. I think that makes a lot of sense. It does make sense looking back at things when I was a child that I had a lot of struggles and my family always just said I was very stubborn. But now that I know about the diagnosis, I don't think it was just me being stubborn and difficult, it was that I was having meltdowns and nobody ever realised.

I know I was also told that because I am afab and was in the mental health system as a teen when I was assumed to be cis-female, and the DSM and knowledge of autism spectrum disorder were very different, that is potentially why it was missed/misdiagnosed. Then unfortunately I went for years without anyone ever taking a fresh look at things and writing things off as me being psychotic before seeing my therapist human who did diagnose autism spectrum disorder. I guess things are different now both with DSM criteria and with just professional knowledge. Which sucks. But I have also been told that a higher percentage of trans folks also have autism spectrum disorder, so it is I guess something that maybe my providers now are more familiar with in that context too. Unsure.

My case manager human said something about there not being anything wrong with it similar to I guess what you are saying about neurotypes. I am not as familiar with all of the language and would say I only have a pretty basic understanding of that stuff. And also have a hard time with trying to apply it to myself and then apply the language to myself also.


For me when I get really anxious and overwhelmed, it is actually easier for me to type than write. That might not be normal though. I have a really hard time with talking in general. I find it a lot easier to talk to animals because I don't have to worry as much about saying the right thing, or them judging me if I say things wrong or just end up making sounds instead of words. After my voice changed from hormones, it somehow got even harder to talk. I am unsure why and have not really mentioned that to anyone.

It is a lot easier for me to talk in situations that are highly structured/ scripted. Like if I go into a coffee shop I can usually say hi and place an order and say thank you. But in situations where I do not know the humans or what to expect or what to say, it is a lot harder for me and then I get really anxious.

I tried googling alert/information cards but none of them seem to have the right information. I might have to make my own.

I did not think about learning an alphabet to spell things. That might work. I am still worried that if I am really anxious or overwhelmed I would forget, but I guess it cannot hurt to have options. I know I often forget I have my phone or laptop for typing unless someone reminds me and tells me to get it out.



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Old 18-02-2020, 12:32 AM   #19
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Is it okay to bump? Creating a new thread seems silly.

I've been accepted into graduate school, starting in August. It's a two year master's program. I'm really anxious about coping with it and all the duties and everything involved. I don't understand the structure and rules and etiquette around being a graduate student. I've had a google but found next to nothing on advice and tips for graduate students also.

Does anyone have any suggestions? I would really appreciate it if so.



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Old 18-02-2020, 06:11 PM   #20
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It varies a bit depending on the course and the institute.

Graduate courses can be more demanding and have more independent study time than an undergraduate course. In the UK at least there is support available but the focus is on you too seek it out and to engage.



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