Attention Is a Valid Human Need

Posted on by Astrid

Hi everyone. One of the prompts for this week’s Writer’s Workshop is to write a post based on the word “attention”.

This immediately brings back a flood of memories of my time at the intensive support home. On one particular occasion – but I’m pretty sure there were many more -, a staff said to her coworker about a client in crisis: “It’s all attention.” She said “attention” in English, not Dutch, apparently hoping the client in crisis or his fellow clients (including me) wouldn’t understand. One of my fellow clients immediately chimed in by translating her comment into Dutch.

The idea that challenging behavior is “for attention” is often not entirely based in truth. However, even if it is, attention is a valid human need. And especially at the intensive support home, clients routinely didn’t get it.

You might think we did get more than enough attention, since the staff/client ratio is 1:2 to 1:3 at this home. But more often than not, staff were doing stuff on their phones, chatting to each other and on at least one occasion, I caught two staff playing a board game together and the third cheering for them. That third person was my one-on-one for the moment, but, because I was also playing a game with a fellow client, the staff thought it not necessary to pay attention to me. Then when I started showing signs of distress, he missed them until I ended up in a meltdown, then told me I could’ve said in a calm voice that I wanted to go to my room. Well, guess what? One of my first signs of distress is an inability to communicate effectively.

On another occasion, the fellow client about whom the staff felt the need to communicate his “attention-seeking” in English, was having an outburst again. I told my one-on-one for the moment that I could see why, because he’d been left to his own resources, often locked in his room, for most of the day. My one-on-one told me he’d had more than enough attention, since he had been having a cup of coffee with the client and had created his day schedule. As if a fifteen-minute coffee chat means you can be left alone for the rest of the day.

Remember, I and my fellow clients have a developmental disability. Most of us cannot participate in everyday conversations among non-disabled people, so when the staff are chatting to each other, most of us will feel left out of the loop. And just because staff are in the same room with us, doesn’t mean they’re attending to our needs, as my example of the board game illustrates. At that point, I needed someone to pay attention to the subtle signs that I was going to land in a meltdown.

And like I said, attention is a normal human need. Staff aren’t telling each other that they’ve had more than enough attention because they’ve had a break (that usually lasts for 45 minutes, four times a day) together. In my opinion, honestly, they should.

Act Your Age, Astrid?!

Posted on by Astrid

Hi everyone. Today’s topic for Sunday Poser is the idea of acting our age. Society expects us to act a certain way depending on our age – not just behave quite responsibly past our mid-twenties or so, but also to wear certain clothes, listen to certain music, enjoy certain activities, etc. depending on our age. Do we generally conform to that expectation? A quick read through the comments on Sadje’s original post gave me the impression that, no, we don’t. And I personally certainly don’t.

With respect to the responsible behavior part, I have to admit, unlike the other participants, that I’m very much a child – no, a toddler – at heart. I still have significant temper outbursts, for instance. In fact, on my thirtieth birthday, I had an intense outburst and was adamant that I could no longer have those in my thirties. Well, my brain wouldn’t listen. It’s said that my emotional developmental level is comparable in many ways to that of an infant or young toddler.

In other ways, I’m still a child at heart too. I love unicorns, going on the swings at the institution playground and stuffed animals. I even talk to my stuffed animals at times.

Then in other areas, I do act my age or even older. I’m not keen on using my phone when doing another activity and get annoyed when my staff get constantly distracted by text messages. I don’t really do social media except for Facebook (which probably makes me appear really old). It isn’t that I haven’t tried, but I was rather late to the party with most platforms.

Of course, the fact that I use the singular pronoun “I” here, is a bit misguided too, since we’re a plural system and there are parts of all ages. This is probably one of the reasons that I can talk to my stuffed animals happily one moment, have a temper tantrum the next and be involved in an “old-fashioned” hobby later. I do sometimes wonder whether my parts are genuine alters or whether something like internal family systems could help them too. Then again, I’m not in therapy, IFS or otherwise, anyway.

Autism and Aggression: An Autistic Adult’s Perspective

Posted on by Astrid

April was Autism Awareness Month. In previous years, I have dedicated my #AtoZChallenge to autism, but this year, I chose a different topic. For a while, I had it in mind to focus on developmental disabilities in general, but, as you can see, I chose another topic entirely. However, the topic of autism is still on my mind. In the coming weeks, I want to offer more of an insider’s perspective on autism and its characteristics. After all, I am autistic and I feel that the blog coverage on autism is heavily divided between parents of autistic children sharing their stories and adult autistics sharing advocacy. Now there’s nothing wrong with advocacy – I feel passionate about it too -, but there is also nothing wrong with personal experience stories. What is wrong is when these are mostly one-sidedly coming from neurotypical (non-autistic) parents of autistic children. Hence, my insider’s perspective.

For my first post, I am choosing a rather controversial topic: aggression. When parents talk about their child with autism, one of the first things they will usually mention is the child’s aggressive behavior. And in fact, this was the first thing my parents would say when asked to describe my problem behaviors too. It was also what got me to be referred to the mental health agency for an evaluation at age 20, which ultimately led to my autism diagnosis.

I don’t know about statistics of aggression in general, but it is highly stereotypical to equate autism with violent behavior. Autistics are not more likely to be deliberately violent than neurotypicals and they are, in fact, more likely to fall victim to violent crimes.

That doesn’t mean aggression doesn’t occur and, when it does, that it isn’t related to the autistic person’s autism. To say that it’s a “comorbidity” is, in my opinion, doing the autistic a disservice. It is, however, an issue that arises in the interaction between the autistic person and a highly autism-unfriendly world. After all, at least I have often gotten aggressive when my needs for autism-supportive care are not met.

For instance, one day in the psych hospital, a nurse, whom I will call Sara, had said one evening that she’d get back to me the following day after morning report to talk about getting me unsupervised off-ward privileges. The next day, I went up to Sara, but wasn’t able to communicate clearly what I wanted. “I’m not your assigned nurse today,” Sara said. “Go to Daisy if you want something.” Now the nurse I’ll call Daisy was a temp worker, so clueless about my needs or what I’d talked to Sara about the previous day. I got very irritable, because Sara had promised me she’d get back to me and now she was referring me to Daisy. I screamed, walked around the ward restlessly and constantly nagged the staff in an irritable voice. By handover, a third nurse, whom I’ll call Robert, came on and said that he’d put me in seclusion if I didn’t calm down right away. “Go on then, stupid,” I shouted. So he did.

This was not my worst incident of aggression ever. As a teen, my mother reports, I would hit her. I currently still occasionally slap or push staff. Usually, this again results from staff not following through on something or not following my daily routine.

I feel strongly that, though not all incidents of aggression can be prevented by parents or carers providing autism-sensitive support, a lot of them can. If an autistic is aggressive anyway, there are much better ways of handling it than solitary confinement.

loopyloulaura

Also linking up with #PoCoLo.

No Unwholesome Talk

Posted on by Astrid

“Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen.” (Ephesians 4:29 NIV)

I had a very bad anger outburst this afternoon. For a very minor reason, I yelled at and insulted a staff member quite majorly. I told her to leave, which she did, but not just because I told her to. In fact, I’d caused her to get a little teary.

Obviously, I regret my outburst, though initially I didn’t fully see that it was all my responsibility. I mean, I did feel as though this staff member had triggered me. I see now that my anger was extreme and way out of proportion to the situation.

Then, in a collection of journaling prompts, I was pointed to this Bible verse. I didn’t know what it said, so went and looked it up because I find that Paul’s letter to the Ephesians usually appeals to me. There it was. Do not let any unwholesome talk come out of your mouths. Wow!

This does not refer just to no swear words. If it had, I could’ve said I don’t use those. Instead, looking at the second part of the verse, we’re supposed to only use words that build others up. In other words, calling someone names is the exact opposite of what Paul asks us to do here.

I did eventually apologize. Initially, this was a kind of half-hearted apology. Not because I had meant my insult, but because I struggle to prevent this happening again and because, at the time, I didn’t fully see that I alone was responsible for my behavior. I see now. I am praying that, with God’s help, I will learn better anger management strategies.

God, I want to confess that I am a very sinful person. You know this already, but I need to realize that my behavior is wrong. I had a horrible anger outburst and I didn’t even fully acknowledge that it was my fault. Please help me take responsibility for my anger. Please also help me come to You in future situations where I get triggered rather than react in anger. I pray for forgiveness and hope that You will still accept me even though I am not living up to even human expectations, let alone Yours. In Jesus’ name, Amen.

If The Staff Saw My True Nature…: Reflections on Not Belonging

Posted on by Astrid

Yesterday, I was in yet another crisis. I was majorly triggered when a staff told me at the dinner table to calm down or go to my room because she had other clients to attend to as well. This triggered both my fight and flight responses. I was completely convinced that this one remark proved that, if staff truly know me, they’ll abandon me. After all, if they truly knew my nature, they’d know I needed more support than they can offer. I was and still am intensely ashamed of this nature of mine, but for whatever reason, I cannot seem to change it.

I cannot stop this part of mine who thinks she needs almost literally one-on-one support all day. It isn’t even a sense of entitlement, since I don’t feel that I’m somehow deserving of more attention than the other clients. Or maybe at the core I do believe this. I’m not sure. My parents would say I do believe I’m somehow entitled to endless attention.

At one point, I lashed out at the staff member. This led to further intense shame. I was convinced that, in that moment, the staff had seen my true nature and that she was going to make sure I’d be kicked out.

For whatever reason, she didn’t. She did, I assume, write an incident report. Other than that, I must say she was incredibly nice all evening.

And yet all day I was convinced that, if the staff nor the manager were going to kick me out, they must not have seen how wicked I really am. I do know that, in truth, this was one of my worst outbursts of aggression ever. I’ve done more harmful things, but those were harmful only to myself.

The manager came to talk to me late in the afternoon. She reassured me that I won’t be kicked out. I tried to tell her that, despite my desire to be good, I feel I might need more support than my current home can provide. I wasn’t trying to elicit her pity or convince her to apply for more funding for me, but I was trying to make it clear that I may be more of a burden than she can handle. I don’t want to feel attached to the staff and the home and even some of the other clients only to be told in a month or two that after all I’m too much of a handful. The manager sort of reassured me.

And yet, when she was gone, I went online and looked at other places I might be able to move to. Not because I really want to move, but because that’s what I’m used to. I’m used to not being wanted anywhere. And it’s tempting to believe that, with how often I end up in crisis here, I don’t really want to live here myself. Ugh, I don’t know how to answer that question.

We’re In Pain

Posted on by Astrid

So we’ve had a mouth ulcer for some days now and as of today, it really hurts. Our staff called the GP, since we can’t go to the dentist now due to our facility’s COVID-19 restrictions and also since they already knew it was a mouth ulcer. The medical assistant couldn’t decide what to do right away so she talked to the doctor herself. Our staff called back some time later. At first, the doctor said to just take paracetamol, but our staff nagged a bit, so now we’ll get some lidocaine gel. This will probably arrive tomorrow.

We somehow misunderstood the doctor’s telling our staff to just give us paracetamol as her thinking we weren’t in significant pain or that we were overreacting. This caused some of us a lot of upset. Over dinner, we were feeling really overwhelmed by the pain and also other clients’ noise. We somehow couldn’t speak until after we’d had a full-on meltdown. Then we got to express our pain and our staff fetched us some paracetamol. That did help some. We’re still in pain, but it’s manageable.

We generally feel very triggered of late. We’re currently reading a foster care memoir by Maggie Hartley called Who Will Love Me Now?. It’s about Kirsty, a ten-year-old being rejected by her first foster carers after they took her in from a neglectful biological mother as a baby. Understandably, Kirsty feels that no-one loves her now and is acting out a lot to prove this point.

I feel a lot of the more disturbed younger parts can relate to this. Thankfully, our parents never abandoned us, but they did threaten to institutionalize us a lot. Age ten was around the time this started.

I also showed a lot of the behaviors Kirsty shows. I mean, I would also often tell my parents that they didn’t love me. Though I didn’t experience the early abandonment Kirsty did, I do most likely suffer with some attachment issues. I can only speculate as to why this might be.

As we’re now in a place where at least so far the staff are saying we can stay, I notice we act out a bit out of a need to “prove” our point. Which is what, really? That no-one wants us, I guess. I’m not 100% sure how to let go of this feeling.

I did journal a lot in my Day One journals over the past few days. It feels good to let out my thoughts. I’m trying to make this a daily habit and hope my blog won’t suffer because of it.

Thankful Thursday (March 26, 2020): My Staff’s Approach to a Meltdown

Posted on by Astrid

Today I’m having a really hard day. I found out this morning that my husband is not allowed to visit me for the duration of the COVID-19 situation. Only in exceptional cases such as when you’re terminally ill can you have a visitor. Well, I guess I’m grateful I’m not in that situation.

During this time of day activities at the home and the chaotic situation that ensues, I’m struggling a lot with basic mistrust. As I explained to my staff, including the behavior specialist, some weeks ago, I’m finding that I experience a lot of distress due to past trauma. I’m pretty sure I suffer with significant attachment issues and am acting those out towards the staff now that I’m beginning to feel slightly safe. I mean, there’s a part of me who says that if the staff truly know me, they’ll kick me out of here or abandon me in some other way. I guess this part is giving the staff a hard time because they’ll ultimately abandon me anyway so I’d better push them away first.

As such, this afternoon, I had a major meltdown. I was watching a video on the Center for Consultation and Expertise website about a man with mild intellectual disability who had a lot of challenging behavior. The way in which I could relate to him, triggered me. I tried to tell my staff, but couldn’t and then I threw a glass to the ground.

Now here comes the reason I prefixed this post with Thankful Thursday: my staff were amazing about it!

My assigned support worker, who happened to work on my side of the home today, called another home for a staff to come over. This was a staff who had also worked in my home previously. She hugged me and took me to my room to talk while my assigned staff cleaned the mess.

This did further trigger me, but it was a good trigger. I mean, in the psychiatric hospital I would’ve been secluded or kicked off the unit and basically abandoned. I had tears of gratitude and sadness at the same time because of how lovely my staff handled this situation. My assigned staff even said maybe we should watch the video together sometime so that I could point out in which ways I relate.

Now here’s hoping my behavior won’t escalate further. After all, then I may in fact be abandoned. My inner critic still says that I’m making up all the factors behind my challenging behavior and it’s all just attention-seeking and abandonment is exactly what I deserve. Regardless, I’m so extremely grateful for my staff!