Hospital story:
I was referred for a diagnostic sleep study with a sleep lab in my hospital. It was the type of study where you stay overnight and have multiple wires attached to your body and your head. The room itself was in a quiet area of the hospital reserved for sleepers, but the room itself was obviously unfamiliar to me. I was allowed to bring my own pillows but the mattress was uncomfortable, the lighting was skewed by machinery, the machines occasionally beeped, I could hear people going up and down the hallway albeit quietly, and I was being watched on camera with technicians asking me random questions as I tried to fall asleep.
I have extremely picky sleep requirements concerning my sensory needs, as well as night terrors from PTSD (I wrote five full pages about sleep needs in my ASD developmental history). I found it extremely difficult / stressful to sleep in this environment with so many wires that I couldn't roll over, move left / right, lift my arms or assume a comfortable position. I thrashed around in duress for over two hours and couldn't sleep, at which time they were telling me that if I didn't fall asleep at all it would take several months to reschedule. I had a panic attack, burst into tears, and tried to pull some of the wires off because of sensory overload. I understand that the wires are necessary and I can't fault the procedure, but my sensory needs were not understood or accommodated in the study. (For example, my sensory needs are just as relevant when I'm at home, and my sensory needs lead to sleep deprivation just as much when I'm home if they are not accommodated). The staff were annoyed by my meltdown and condescending about the fact I "should be able to" ignore the wires and beeps and hard mattress. They pressed me to talk when I was in shutdown mode and I had gone mute.
Fast forward, I eventually calmed enough to sleep a little and the test was completed, although I was very upset and embarrassed about how I'd been treated.
My results were in keeping with most autistic sleep studies (poor REM and Delta sleep, hyper vigilance, extended period of falling asleep, no restorative sleep). I was also assessed with apnea and told to use a CPAP. I was shocked by the complexity of the CPAP which not only involved wearing a full gas mask type of apparatus, but it also produced a scent from the oxygen, and a slight sound while operating. I was told to wear the CPAP (as well as my usual blindfold, my usual earplugs, my usual mouth guard for bruxism along with the giant hose coming out of my face and attaching to a machine such that I couldn't roll around). It was overwhelming to have my face so covered, like claustrophobia, because of the machine and my blindfold and not being able to hear with earplugs.
I tried the CPAP for almost two months to no avail, with sensory panic attacks because of the overwhelm. I was never able to sleep with the CPAP on and I always pulled it off after several hours of trying, crying, and going into meltdown or shutdown. I knew it was in my best interest to persevere for medical reasons, but it was impossible for me to wear the thing.
I had to go back to the sleep study at the hospital to be monitored a second time while using the CPAP machine, for comparison. I knew that I would have extreme difficulty being wired again but now having the added burden of a gas mask on my face with the blindfold, ear plugs and mouth guard I required for sensory safety. You can imagine the meltdown I had when the wires were attached along with this get-up. I tried in vain to relax myself because I didn't want to be embarrassed or misunderstood, like I was during the previous study.
This time I just couldn't do it at all and I had such a meltdown I trashed the room. I threw the CPAP off and pulled off wires while also throwing whatever was around me, and collapsing in hysteria. The nurses came in, undid me, walked me to a little room, and suggested I had schizophrenia because of my outburst. I do not have schizophrenia and I was insulted by their insensitivity. Again, they were condescending because I cried and objected to their misunderstanding. They implored that schizophrenia was possible because I occasionally hear sounds that aren't "really there" when I'm waking or falling asleep. I know I am not schizophrenic, I've been assessed for mental illness and I do not have that condition.
In the final sleep study report the specialist doctor (a Respirologist) confirmed to me that I AM NOT SCHIZOPHRENIC (thank you, doctor!) The random sounds I hear are a sleep disorder known as hypnagogia and hypnopompia, which are clinical sleep disorders. He was able to record them during the study and explain these phenomena to me, and he identified other sleep disorders I have always suffered. He was quite knowledgable and compassionate, but unfortunately he wasn't present to reassure me through the harrowing tests. He apologised for the poor treatment of his staff, and the sensory overload I experienced without compassion. He advised me to stop using the CPAP even though I have apnea, because the risk (not sleeping, panic attacks, sensory overload, melt down, emotional fraught), would do more damage to my health that leaving the apnea untreated. I was glad to surrender the CPAP but it's worrisome to know that I'm sleeping with untreated apnea because my sensory needs couldn't be accommodated by the manufacturers of CPAP machines. I'm at risk of dying from apnea because the machine made a smell, a noise, and was too cumbersome for my sensory tolerance.
I wish there were other ways for autistic people to be tested for sleep disorders, or to be treated if they do indeed require a CPAP machine.
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I never give you my number, I only give you my situation.
Beatles
Last edited by IsabellaLinton on 19 Jun 2019, 11:18 am, edited 1 time in total.
18 Jun 2019, 7:51 pm
