This Is “Profound Autism”?: Reframing the Discussion Around Complex Care Needs

Posted on by Astrid

A few days ago, there was a discussion on the Autism Science Foundation’s Facebook page in which parents of autistic adults with complex care needs were describing their children with the hasthag #ThisIsProfoundAutism. I asked to reframe the discussion to include people with multiple disabilities including autism in general, because it is rarely (but not never!) autism, no matter how severe, alone that causes a person to be completely dependent on caretakers. I then explained that due to the combination of my disabilities, I need 24-hour care, including one-on-one for most of the day.

Not surprisingly, I was quickly met with the question whether I was saying I needed 24-hour help with basic tasks such as eating, bathing, dressing myself, etc. Well, the Autism Science Foundation page is a public Facebook page and I didn’t want the people on my friends list (including immediate family) who don’t know this, to judge me for it, but the short answer is yes. While I, like presumably most “profoundly autistic” people who don’t have physical disabilities, am physically capable of eating and dressing myself for the most part with some difficulty, my executive dysfunction means I still need help with them. As for bathing, well, I basically need someone to wash me, because, while I can physically hold a washcloth in my hand, I don’t have the organizational skills to actually work out the ritual without a ton of supervision and even then it’d lead to a lot of meltdowns.

I did, incidentally, point out that I recognize intellectual disability as a valid additional disability that needs to be taken into account when I asked to reframe the discussion. After all, that’s most likely what’s causing these autistic adults to be unable to understand instruction and to be completely dependent. For me, it’s a combination of executive dysfunction, which is a direct autism symptom, blindness, mild cerebral palsy, and other things.

I also do recognize that the need for support with severe challenging behavior is not the same as the need for help with basic personal care. One does not exclude or necessarily include the other and one is not more valid than the other. I, for one, am somewhat more independent in terms of eating, dressing and bathing than my severely intellectually disabled fellow clients. I am a lot more dependent where it comes to the effects of my challenging behavior.

I also do not mean to say that autism on its own cannot possibly cause a person to need a lot of care. It can. I am reminded of a girl I read about on Dutch social media many years ago, who indeed had hardly any functional communication skills but did have an IQ above 85. She, unlike me, didn’t have any additional disabilities. She was completely left behind in the care system: she was too severely disabled for traditional child and adolescent mental health services, but her IQ was too high for intellectual disability services. Really, I should not have called for reframing the discussion to include those with multiple disabilities, but those with complex care needs in general.

That being said, I strongly disagree with those people who say that just because I can write, means I should have ignored the conversation, since it clearly wasn’t meant for me. The fact that I can write, does not make me not dependent on care providers and does not mean policy or lack thereof won’t affect me. I am autistic and that, along with my blindness and other disabilities, causes me to need the extensive care I get now.

Final Goodbyes

Posted on by Astrid

Yesterday, the fellow client who passed away was temporarily moved from the morgue into her room in the care home. I went to have a quick look yesterday evening. This morning, since I had finished my polymer clay butterfly and flower, I went back into her room and set them at her remembrance table next to her coffin. My assigned home staff was with me and asked me whether I wanted to touch her coffin, the things she had with her and even her hand. I did. Her hand was cold, which was the final reminder I needed that she’s really dead.

This afternoon, we went back into her room to pick a rose from her remembrance bouquet. We then went outside and stood in a circle with all other clients and staff who were close to this client and the family. Everyone laid a rose on the coffin. The client’s brother and our support coordinator spoke a few words and then the coffin was put into the funeral car and driven away. My assigned staff cried a few tears. I did feel sad too, but I couldn’t cry.

This is the first time I’ve ever been this close to a deceased person. I mean literally, as in touching her hand. When my maternal grandfather had died in 1995, I did pay him a quick visit at the funeral center, but was only able to have a quick look and with how little vision I had back then, I probably could hardly make out what he looked like. With my other grandparents, I didn’t ever get to see them while in their coffins. I had originally thought I wouldn’t benefit from visiting this client in her room because I couldn’t see her, but I actually did benefit. I was able to say my final goodbyes. Now I know she’s really gone.

Written for E.M.’s Random Word Prompt #7: “Remembrance”.

A Few Really Intense Days

Posted on by Astrid

Last Thursday was a weird day. I had to have my mammogram at 11:45AM at the hospital in the nearest city, which is half an hour’s drive away. We arrived about fifteen minutes early, which was good, since I still needed to get an ID label. Normally, the hospital give you an ID card with your first visit, but the receptionist said I should already have one since my ID was in their system. It probably was from when I had my abdominal X-ray at the outpatient clinic here in town, where apparently they don’t do ID cards. Oh well, he printed off a label and sent me on my way.

The mammogram people were running a bit late, so I got a little stressed. As it turned out, the person doing my mammogram was also a guy, which made me feel slightly uncomfortable. I tried to reassure myself that it’s his job. The mammogram was painful but thankfully it was over with quickly and I knew that it being painful said nothing about possible results.

In the evening, a male I initially didn’t recognize was in the care home. As it turned out, he was our GP. I was already distresssed from my schedule going to pieces due to the mammogram. It was getting even worse, because it turned out a fellow client had to go to the hospital. She had Down Syndrome with severe heart complications and the doctor suspected her heart was acting up again.

Later, it turned out she had RSV, a type of pneumonia that normally only affects babies and small children. She was tested for COVID too but was negative. As she was moved from cardiac care to the lung unit, she seemed to improve over Friday and Saturday, but wouldn’t be discharged until Monday as there are no doctors to do that over the weekend.

Thursday night, I myself started experiencing nausea and bad stomach pain and could hardly sleep. I vomited a few times in the morning, then was exhausted and lay in bed most of the late morning and early afternoon Friday. Thankfully, by Saturday, most of my symptoms were gone.

Then on Sunday morning, I got the news that the fellow client who’d gone into hospital Thursday evening, had passed away after all. My first thought was: “This won’t affect staffing, will it?” I quickly silenced those thoughts, knowing they are selfish. When the manager came by to support the staff, she did pay a quick visit to my room though and I asked her whether the vacant room would be filled quickly now. She reassured me that the staff and clients will have time to process this loss first.

I have been busy all of yesterday evening and today thinking about how to make something for the client out of polymer clay to go with her to the funeral. Yesterday, I initially made a butterfly using a mold, but I did it all wrong and it turned out rather rubbish. Then I decided to create a multicolor flower. However, one of the staff who knows the family’s wishes about the funeral etc., told me a butterfly would be especially fitting. So I stressed all day about how to make a butterfly using my rather inflexible mold. I might’ve found a way. My nurse practitioner, with whom I had an appointment this morning, did reassure me that I am well-intentioned regardless and that’s what matters.

This afternoon, I got the results of the mammogram. Thankfully, there are no abnormalities! At least that’s something to be happy about.

Reclaiming November

Posted on by Astrid

Tomorrow is November 1. November is the hardest month of the year, since it is the month in which I ended in crisis in 2007.

Thirteen years later, it was also the month in which I finally broke down and admitted I needed more support than just the care facility’s group home support. On November 8 of last year, I broke down when a staff (the same staff who is now my assigned home staff) asked me to either calm down or go to my room when I was acting irritated at the other clients’ noises. My reaction wasn’t pretty: I hit the staff, screamed I hated her and cried out that indeed, as I’d been saying all along, if I showed who I truly was, she’d abandon me. She didn’t.

During the days that followed, I experienced significant dysregulation, including some near-psychotic symptoms and a lot of sadness. One day, I was crying my eyes out in my room when another staff came in and said she was going to spend her entire two-hour shift with me. We talked and she asked me whether I’d ever heard of one-on-one support. I had, but asked her to elaborate anyway. She did and asked me whether I wanted that. “Yes,” I said. The next day, the staff I’d hit and my then assigned home staff made the paperwork in order, because I had to sign a letter to the manager formally asking for more support. By mid-November, the wheels were set in motion for me to get one-on-one support and my one-on-one was pretty soon effectively started.

Now, as we’re approaching another November, I’m reclaiming the month. I don’t want this to be the month I landed in crisis so many years ago for the rest of my life. Instead, I want it to be the month I chose to get the support I need. I am choosing to stand up for myself, not just because crisis states force me, but because I have a right to do so.

Joining My Vivid Blog’s prompt: “Tomorrow”.

Gratitude List (October 29, 2021) #TToT

Posted on by Astrid

Hi everyone on this Friday evening. I’m doing a gratitude list again today. As usual, I’m joining Ten Things of Thankful (#TToT). Here goes.

1. I am grateful my abdominal X-ray came back all normal. There’s no constipation or excess gas. Of course, this does mean we still don’t have answers as to what is causing my abdominal discomfort and how to deal with it. I have another appt with the GP to discuss further steps.

2. I am grateful my staff, the one who was on sick leave, is slowly returning to work. She came by for a quick visit yesterday.

3. I am grateful for nice weather. Most of the week, the temperature’s been above-average for this time of year, with today it going as high as 17°C. It’s been pretty clear and sunny with no rain too. The weekend is supposed to be different, but oh well, that’s okay.

4. I am grateful for interesting conversations. I’ve been exploring the enneagram again and engaged both my husband and several staff in discussions about it. I got one staff to take a test and, assuming the test typed her right, so did I.

5. I am grateful my creativity seems to slowly be returning. I’m not yet actually creating anything, but I’m exploring polymer clay again. One of my staff is going to bring me some supplies for creating something she saw online or in a book tomorrow and I’m really looking forward to it.

6. I am grateful I had the guts to finally press the “report a problem” button on one of my most recent PayPal purchases. I spent €90 on what looks in theory like pretty amazing software. Turns out though that the license information I was given doesn’t work. I tried to contact the vendor via their website but got an “undelivered” E-mail response. I saw that their PayPal contact info was different, so before proceeding to actually report the problem to PayPal, I decided to try one more time to contact them via that E-mail address. Fingers crossed this will work.

7. I am grateful for yet more newly-discovered essential oil blends. I still haven’t bought more oils in part due to said €90 I might’ve thrown down the drain, but I love learning new ways I can use the oils I do have on hand. I currently have a blend of cinnamon, ginger and ylang ylang in my diffuser.

8. I am grateful for salad again. My day activities staff and I made this for lunch (well, she did the actual making) on Wednesday and there was still some left on Thursday.

9. I am grateful for all the sensory equipment I have right here in my room. On a Messenger chat, we were discussing ways to cope with anxiety and I mentioned my essential oil diffuser, weighted blanket and music pillow. These things make me so privileged.

10. I am grateful I am safe in the care facility. I find it hard to say this, but it’s true.

What are you grateful for?

The Best Decision of My Life

Posted on by Astrid

I really want to write, but, as usual when I’m like this, so much is spinning through my mind that I cannot ultimately get anything out of my fingertips. To get myself started, I decided to look at the book Journaling with Lisa Shea and picked one of the journaling prompts on gratitude. It asks us what the best decision of our life was. Was it an easy decision or a hard one? I’m pretty sure I already covered this topic several years ago, but the answer may be different now.

After all, up till quite recently, I would have said the best decision I ever made was to consent to being admitted to the psychiatric hospital in 2007. That, after all, set in motion the wwheels that ultimately got me into the care system. However, looking back, I could just as easily have selected my choice to go to the blindness rehabilitation center in 2005 rather than to university. After all, that was what led me to the training home and to my autism diagnosis.

I honestly don’t want to give the psychiatric hospital people, particularly my last treatment team, the credit they get if I say that getting admitted was my best decision ever. After all, like I have said before, I didn’t make much progress in those 9 1/2 years in the hospital. Worse yet, the only difference between my care arrangement before the hospital and after it, was that my husband was now in my life. My husband deserves the kudos for that, not any mental health professional.

Instead, the best decision I ever made, I made rather offhandly on September 20, 2018. This was the decision to allow my support coordinator to schedule an appointment with her regional care consultant on getting me into long-term care. The appointment itself took place on October 4.

I say I made the decision rather offhandly, in that we were discussingn living options and I eventually said, sort of half-heartedly: “Okay, you can ask your care consultant to come.” In truth, the decision was a really hard one.

Even though I had planned on going into supported housing ever since my initial psych hospital admission in 2007, it felt kind of like I was betraying my husband, my parents, my former treatment team and everyone else by admitting this is what I needed. For this reason, my husband’s first words when I said my support coordinator had scheduled the appt with her care consultant, were very comforting: “You know I support you, right?”

Loneliness Comes From Within: Some Reflections

Posted on by Astrid

I am still struggling badly. I have been having flashbacks of the time when I lived on my own in 2007. When I told my husband this tonight, he asked whether any traumatic events happened there. Not really in the classic sense of the word, but I did suffer intensely. The “cage”, as I called my apartment, was a filthy, dark and gloomy place. Neither I nor anyone else had ever thought of making it into a home.

I was intensely lonely during the three months that I lived in that place. Nonetheless, people did reach out to me. I was in touch with several of my fellow students in the linguistics program at university, one of whom lived in my housing complex too.

When I mentioned this, my husband said that loneliness rarely comes from the environment. It wasn’t that no-one cared, as had been the case during most of my high school years. In fact, multiple people reached out to me, but I was closed off to contact with others. I was so convinced that I was unloveable that I didn’t attempt to form genuine bonds with people.

Sadly, it’s still mostly this way. Just a few days back, I was telling my husband that all caring staff eventually leave, referring to the idea I’ve gotten in my head that my assigned staff is not coming back. Indeed, a number of staff have left in the past or told me they had to distance themselves from me due to my behavior. However, a number have stayed too. In particular, my support coordinator from when I lived with my husband, stuck by me till the end.

Of course, staff/client relations are different from friendships. Staff might leave for reasons that have nothing to do with me. Others will come in their place, sad as it may be. Friends though will not necessarily be replaced. And that’s where it hurts more: I feel intensely incompetent at forming friendships.

I mean, though I did have contact with fellow students and people in my housing complex while living on my own, I mostly sucked up their energy. I feel intensely sad about this. I still feel like I’m not able to make friends ever at all. However, there is hope. Now that I (hopefully) am in a stable living situation, I may be able to build on some genuine friendships after all. I already consider some of my fellow clients my friends. I don’t need to rely on them for support, as I (hopefully) have my staff for that. That should be a relief.

#WeekendCoffeeShare (October 3, 2021)

Posted on by Astrid

Hi everyone on this rainy Sunday. I’m joining #WeekendCoffeeShare this afternoon. I may add another post for Blogtober and the 31-day writing challenge, though neither challenge requires you to follow a topic or prompts. In this sense, this post could count as my daily post for October 3. We’ll see if I can still find time to write a post on today’s optional prompt too.

As usual, I just had my afternoon coffee, but I’m pretty sure the other clients are still having theirs. Let’s have a drink and let’s catch up.

If we were having coffee, I’d tell you that this week is a bit meh. It seems it’s the beginning of fall that’s causing me to feel more depressed and less inspired than usual. I have been going for a few walks over the week, but not many due to the rain. I also hardly did anything crafty. Today, I spent a lot of the morning and early afternoon in bed.

If we were having coffee, I’d share about my care plan review last Thursday. Like I said in my previous posts, it went mostly as expected. It did create some stress in me related to the upcoming reassessment of my one-on-one care. The behavior specialist also told me at this meeting that she’s going to work at another care facility that’s part of this agency, so she will no longer be assigned to my case. It’s not yet decided who her successor will be, but that should become clear pretty soon.

If we were having coffee, I’d tell you that, the evening after the care plan review, my assigned home support staff left her shift early due to being sick. Everyone else is telling me she just has the flu, but I somehow got it in my had that she is suffering burnout and it’s my fault for having sucked up her energy too much.

This situation led to a bit of a crisis Friday night. I left my room initially looking for the late shift, but she’d already left the building. However, my room-leaving detector didn’t alert the night staff yet, probably because it was just before 10:30PM. The people who would receive my alerts at night, are at the main institution in another village and they are then supposed to call the night shift here. In other words, there is no way I can alert the night shift here directly. I went looking for help, but the outside door of the home was already locked.

This led to a bit of a panic and I went into dissociative mode. I grabbed a chair and climbed over the half-door into the kitchen (the kitchen is locked at night to prevent me entering it and self-harming). I tried to self-harm in several ways, but thankfully didn’t really get hurt. When the night staff came to get another client to bed, she saw me and helped me to my room.

If we were having coffee, I’d tell you that, despite all the troubles, the week will likely end on a positive note. Several of us clients have not received meal delivery service meals this entire week because we were supposed to be emptying out the freezer. This did mean I got a lot of the same meals this past week and today I said, if I got noodles again, I’d ask my one-on-one to drive me to the supermarket so I could buy a salad or something. Turned out one of the other clients whose freezer was supposed to be emptied, didn’t fancy his meal for today either, so the staff agreed to order food from the local Italian restaurant. I will be getting a tuna pizza.

How have you been?

Why I’m Content in My Current Care Facility #31Days2021 #Blogtober21

Posted on by Astrid

Last Thursday, like I mentioned before, I had my care plan review here at the long-term care facility. It was my first one, even though I’ve been living here for two years, because last year’s got canceled due to COVID. As we were discussing my progress over the past two years and my wishes for the future, I said that I’m about 95% sure I want to stay here. That’s huge for me, as I’ve been constantly on the lookout for another place to move to particularly over the past year.

This brings me to today’s prompt in the 31-day writing challenge: content. I at first wasn’t sure what to write about on this word. I mean, I wanted to write why I’m content living here, but somehow it felt kind of off. Then I read Lesley’s contribution to the challenge, Contentment Without Complacency, and realized that being content where you are doesn’t mean there’s no ground for improvement. So, with no further ado, I’m going to share why I’m content living in my current care facility.

First of all, I love the way my staff support me. As regular readers of this blog will know, I’ve had quite the journey through the care system. I resided in a mental hospital for 9 1/2 years, where there was constant pressure on meeting goals and getting better. Before that, I lived on my own and, before that, in a training home. As the name suggests, it was heavily focused on independence training.

For those not aware, my current care facility primarily caters to people with an intellectual disability. All other clients in my specific home have severe to profound intellectual disabilities. For this reason, my staff are used to helping them with everyday activities such as mealtimes, personal care, etc.

They are also used to clients needing staff to realize that correcting challenging behavior will not be effective. Whereas in the mental hospital, I used to be often left to my own resources if I’d done something self-destructive, now my staff provide me with affectionate care. This might be seen as reinforcing the behavior, but in my experience, quite the opposite is true.

In addition to liking my staff’s care approach, I like my fellow clients’ lack of social expectations of me. One of my fellow clients will occasionally come to my room asking me to wish him goodnight, but other than that, the clients hardly interact with me. One wish for the future that I voiced at my care plan review, is more interaction with other people, particularly those of higher intellectual level. I do have a couple of friends in other care homes that are part of the complex, whom I talk to when going to the day center or when outside. I however am grateful that I don’t live with these people 24/7.

I also like my room. Some staff call it an apartment, since I have my own bathroom and small kitchenette. I also have my own balcony. I honestly haven’t had a better room in any of my previous places in the healthcare system.

Overall, the reason I’m not 100% sure I want to stay here, doesn’t seem to have to do with my facility itself. It is rather related to my own anxieties and insecurities. Of course, things could always be better, but that doesn’t mean I’m not content exactly where I am right now.

Why Do I Need One-on-One Support? #31Days2021 #Blogtober21

Posted on by Astrid

Yay, it’s October and this means it’s time for Blogtober 2021. Last year, the prompts were based on song titles. This year, there are no prompts. However, Kate Motaung of Five Minute Friday also relaunched the 31-day writing challenge after a break last year and there are prompts for this year. The first prompt is “need”. We can do a five-minute freewrite, but I’m no good at sticking to five minutes or at not editing my writing.

Yesterday I had my care plan review. I was really concerned about my need for one-on-one support being reassessed later this year. Not that the care plan review would really matter for this or so I’m told, but now that we were all together (my home and day center staff, the behavior specialist and my mother-in-law), I wanted to raise the issue. It’s the behavior specialist’s job to write the reapplication paperwork and I questioned whether it sufficiently documented my need for one-on-one. To get things clear in my mind, I am going to write out why I need the support I need.

Firstly, I am blind and have a mild mobility impairment due to cerebral palsy. This, combined with my psychiatric illnesses, means I cannot move about outside the care home, or even outside of my room, independently much at all. This means that the staff need to be alerted when I leave my room looking for them, so that they can come out looking for me.

I am autistic. In my case, I get severely overloaded having to function in a group setting, such as at the day center. Even with noise-canceling headphones on, I still get distracted from trying to do things on my phone while there. Besides, if I do have functioning headphones, they will block out so much noise that I’m essentially cut off from my surroundings and can’t be alerted should something happen. This creates intense anxiety.

This anxiety also leads me to be unable to function on my own for long periods of time. I can, if I’m doing well, be left on my own in my room for up to about 30 minutes at a time. It doesn’t help that I know rationally that someone might be in the next room, because emotionally, if they’re out of earshot, they might as well be on the North Pole.

Autism also means I tend to fixate on routines. In my case, I tend to hyperfocus on the times my staff are going to leave me alone and this creates even more anxiety even when they’re still present. For this reason, staff need not stick to rigid rules of what time exactly they’re going to leave me, but rather to the order of activities.

If I’m left alone for prolonged periods of time, I can often feel incredibly unsafe and start to ruminate, which can easily escalate into self-destructive thoughts and actions. I may also run off in a fight-or-flight response.

I have complex PTSD, as well as dissociative symptoms. This means I can experience apparent age regressions. I get triggered very easily. Flashbacks, too, can lead to a fight-or-flight response.

Thankfully, now that I’m on the right medication, I don’t get as many flashbacks as before. However, I still do experience many serious behavioral issues that can be prevented or averted by the fact that I have one-on-one support most of the time.

I’m pretty sure a critical assessor would be countering that my one-on-one would not help me learn to cope with my anxiety. Thankfully, the goal of my long-term care plan is stabilization, not development. In other words, the original assessors for my long-term care funding did not feel I am trainable anymore. Otherwise, I would not have gotten approved for what is essentially lifelong care at all. The only thing is that my one-on-one care exceeds the care normally paid for by my long-term care profile. Oh well, let’s hope the assessor sees my need for it for at least another year.