Thank you. Thank you. It really means more than you can imagine, I saw the little notification bell and thought for certain it was someone else disagreeing with me. I'm queer myself and very much an ally to everyone whose queerness is different to my own, and it hurt so much to learn that my diagnosis, to some, makes me less tolerable than a member of a hate group.
Unfortunately, when local professionals told me that autism is a disorder of childhood in which they are not trained, and therefore they will not see me, they are being very serious, not joking even in a dark and twisted way. My country has a kind of national health service and I happen to live in an area where there are no services of any kind for autistic adults. Once I am told "no, you can't have an appointment, I don't see autistic adults", there is nowhere else to go.
Please understand that writing about my experience of autism in a Beehaw comment will necessarily give an extremely simplified and limited view of what my life is like. I've had similar discussions in the past where the other person either decided I was seeking advice or found a way to twist my experience to fit their beliefs, and I'm honestly not here for either- if I stop responding after this comment, that would probably be why. I also can only give a few examples without also writing a book.
I am hypersensitive to all kinds of things that non-disabled people can easily ignore. I cannot go anywhere where there might be harsh florescent lighting, sudden noises, flashing lights, loud music, or strong, invasive smells like perfume, because these things cause me literal pain. This means I can't go shopping in a mall or pretty much anywhere else. I can't go to any large gathering of people. In fact, I can rarely go outside at all, because you never know when you're going to be confronted with someone who thinks the whole neighbourhood wants to hear their music. I suffer from severe emotional dysregulation that makes my life a living hell- I am 51 and I have regular meltdowns and attacks of rage. My behaviour is not "normal" for a woman of my age, and it causes me great distress and prevents me from living the life I want to live.
That is not to say that I would want to cure my autism. The fact is, I am attempting to get treatment for my sensory processing disorder but am fighting ableist anti-autistic attitudes from local health care professionals. I believe there needs to be some sort of place in the NT world for those of us who are totally overwhelmed by the NT world but also would like to not always be left out of everything.
If your argument is "you can't be ableist against an autistic person because autism is not a disability", we will have to agree to disagree, because my lived experience is that autism (for me) is disabling and ableism against the autistic is both real and disabling.
I also feel that reducing it to a simple language issue is negating that there are autistic folks (like me) who are disabled by aspects of their autism that are not related to failure to communicate with NDs. It's good that your lived experience has been that autism is not disabling for you. My experience is different, and my experience still counts.
What I do is challenge this attitude when I see it. People think it's acceptable to reject autistic people socially, and they continue to think this because nobody's ever pointed out the inherent ableism in such an attitude. It's just considered acceptable to feel that way, just like it would have been acceptable in the 1940s for a white person to not want Black people living in their neighbourhood- the same arguments were put forth, that integration could not and should not be forced on people. Now we know that is wrong. It's time to know that social rejection of autistic people simply on the basis of autism is also wrong.
I think we agree on far more than we disagree on. However, for me, autism is legitimately disabling- I am prevented from engaging in many normal life activities that non-autistic people enjoy. Partly this is due to extremely severe sensory processing disorder, which I was told is part of my autism diagnosis and not a separate issue. Partly it's due to ableism, which I define as "social prejudice against people with a specific diagnosis"- which is exactly what's happening when an NT prefers the company of a member of a hate group above the company of someone with an autism diagnosis.
As an autistic adult, it makes me incredibly sad that you would prefer to meet a transphobe. Occasionally (not on Beehaw as far as I know) I'm accused of being pedantic and argumentative online, but often the cause is a total misinterpretation of my tone and intent. I find it heartbreaking that hanging out with a transphobe is preferable to trying to understand an autistic person, and in all sincerity I hope you will explore the cause of your ableism so you can overcome it.
I think that may be a good idea, because I noticed that when I get up in the middle of the night to use the bathroom, then come back and reattach the hose, the higher pressure is actually more comfortable.
Last night I slept a little better and didn't push the nasal pillow off in my sleep, so there's some progress.
Yeah, it's a big change. My adult son has been using CPAP for about two years and I've seen how much it helps him, so I am not giving up yet by any means. I'm just feeling whiny because I'm so tired of being exhausted and I guess I thought I'd see a huge benefit from day one.
Thanks for the kind words. When I say I feel like I'm suffocating, I mean that I feel like I can't exhale properly, which to me feels like suffocating. But it's only my first night with the machine and I don't intend to give up. Ramp is turned on, and the device says I have the nasal pillows placed properly. The device has an SD card and I plan to install OSCAR to get better data, but because of the way the system works where I live, it's better for me not to take out the SD card every single day if I can avoid it (I don't own the machine, it belongs to the health service).
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