Tag Archives: Overload

Sensory Processing Issues: Touch

Today, I listened to a Dutch video about sensory processing and creating a sensory valuable environment for clients with challenging behavior due to sensory processing issues. As I may’ve shared, the Center for Consultation amd Expertise (CCE) coordinator asked whether I’d ever had a sensory integration assessment. I haven’t and figuring out my sensory needs by myself is really tough.

It doesn’t help that I have little memory of my sensory needs growing up. As you might know, my parens don’t believe I’m autistic, believing instead that I choose to misbehave out of a will to manipulate. As such, I cannot ask them (particularly my father) to provide insights into my sensory needs. As the video presenter didn’t say whether sensory needs can change over time, and I am unsure about my childhood, I do not know whether my needs are valid.

After finishing the video, I read The Realistic Autistic’s post on touch-based sensory processing issues. This was really insightful. I could relate to a lot of the issues Sarah, the post author, describes. For example, growing up, I do remember hating the seams in socks and possibly the tags in clothes too. Now that I’m an adult, I don’t experience this issue that much anymore.

Like Sarah, I also prefer deep pressure to light touch, but I don’t have a problem with light touch usually when I’m okay mood-wise. Unlike Sarah, I’m more sensitive to cold than to heat.

One particular aspect of touch that Sarah didn’t touch on (no pun intended), is the experience of tactile stimuli in the mouth. I seem to have a lot of issues with this and always have.

In some respects, I seek extra stimulation in this sense. As a child, I’d very often chew or suck on my clothes and, later, my hair. I still chew on my hair on occasion (though, having had a haircut a few weeks ago, I no longer can).

On the other hand, I hate the feel and taste of teeth-brushing, particularly with toothpaste. I couldn’t stand brushing my teeth with toothpaste until I was eighteen and even now, I want it over with quickly.

What I also notice is that, if I have control over the stimulus, I may seek out more stimuli or avoid them less than when others impose them on me. For instance, Sarah talked about the issue of having a haircut. I hate this. Interestingly though, hair-twirling is one of my main stims.

In the Dutch video, it was mentioned that between eleven and thirteen million stimuli get to our brains each second. Most are immediately filtered out, but roughly 4,000 are processed on some level. For this reason too, the presenter said eliminating all stimuli is not possible. I find that sometimes adding a stimulus will help me deal with overload. For example, I recently discovered some weighted stuffed animals at day activities. These provide a form of deep pressure that helps me feel calmer when overstimulated.

Detailing My Support Needs

Last week, I wrote about wondering why I seem to have high support needs. The painful truth is, I may never know the answer. After all, most neuropsychological tests that would show executive dysfunction, performance IQ tests and such cannot be administered to me because I’m blind. Even tests that can be administered may not show my actual performance in daily life, because a one-on-one testing situation is different from for example day activities in a group.

In 2013, we had the Center for Consultation and Expertise (CCE) write out my support needs in order to hand those to the local authority once I’d leave the institution so they could decide on care funding accordingly. All my needs were written down really vaguely, particularly those for day activities. I needed a place where I could do creative activities for at least four mornings a week. No detail was given to how much support I’d need doing those creative activities.

As it turns out, the CCE is unwilling to even see me again, as they judged from a phone call with my community psychiatric nurse that the main problem is my blindness. As such, I guess no-one will ever be able to help me detail my support needs, so I am going to write them out myself here. I will include the supports my husband provides me.

During a week day, I can get up, shower and dress myself without assistance. Usually, I eat yoghurt with muesli for breakfast, which I can prepare myself with some difficulty. However, when I spill food doing so, I usually either don’t notice or don’t remember or know how to clean it up. This is a source of irritation with my husband, as he doesn’t know whether I’m just too lazy to clean up after myself or there’s some genuine issue preventing me from doing it. I can’t put my finger on exactly what the issue is either, at least not when I do remember that I need to clean up. When I forget, I honestly don’t know what the issue is either, as I am not known to have a bad memory according to tests. All I know is that all the “rules” that I have to remember regarding proper cleaning up, feel incredibly overwhelming.

I take my morning meds without reminders, but my husband has to put them in my medication box. He does this once a week. My evening meds, I often forget even with a reminder. I have set an alarm at 8PM on my phone for them, but when I can’t drop what I’m doing at that moment and run right to my medicine box, I often forget to take them later.

I have finally learned within the last year to brush my teeth without reminders each morning and evening. I still have an aversion to the feel and taste of toothpaste, but have learned to tolerate it now, though I can’t manage to brush for two minutes. I often spill toothpaste everywhere. I do try to clean it up, but often I don’t see where I’ve spilled the toothpaste (on my face, my clothes, etc.). My day activities staff often remind me to clean my face and sweater even though I’ve tried to before leaving for day activities.

I arrive at day activities at around 8:45AM. Usually, the cab driver or a day activities staff helps me to my group’s room, though I think I could navigate the building independently if I really needed to. My day activities staff gets me a cup of coffee. At home, I can make a cup of Senseo coffee myself.

At day activities, I run into several different issues. First, I find it hard to decide for myself what I’m going to do when it’s free time or the staff are busy caring for another client. When I have something to do, for example an activity on my phone or a sensory activity that I can do independently, I’m usually fine unless I get distracted, ovelroaded or frustrated.

I can navigate my group’s room and the day center with some assistance. For example, when I need to go to the bathroom, I can usually find it by myself but need some assistance when for example someone has moved the toilet paper. I can sometimes go to the snoezelen (sensory) room independently, but usually a staff takes me there so they can see if I can find all the supplies I need there. At home, I move through the house without any assistance and without my white cane. I cannot navigate the backyard though and after nine months of living here still need some directions finding my way to the front door from the cab or my husband’s car.

My husband prepares my lunch for me, as this is bread with sandwich spread or peanut butter, which I can’t prepare myself. I need no other assistance during lunch time. During dinner, my husband puts the food on my plate. As of this week, I have a curved sppon, but I’m as of yet undecided as to whether it is easier to eat with it. I still spill a lot of food. Regarding drinking, I can sometimes pour myself a soft drink (depending on the weight/size of the can). I can if I really need to make myself a cup of tea, but for safety reasons I prefer to have tea only when my husband or support staff are with me. I can get water independently, but often forget to drink enough of it despite my husband having given me a one-liter bottle.

My husband cooks and does the cleaning. I sometimes, when I spill something in my own room, try to clean it up, but I tend to at least feel rather awkward doing so. I don’t have any idea as of how often to clean my room or whatever. This again annoys my husband, as he says I can do it.

The hard part is, I learned to do a lot of the things I now need assistance with independently when I was in blindness training from 2005 to 2007. It may be tempting to say the problem is my blindness and I just need more training. Here we come back to the beginning, which is that for whatever reason, it feels completely overwhelming, but I don’t know why.

Spectrum Sunday

First Week of 2018

Oh my Gosh, it’s beginning to get boring: I haven’t written on this blog in almost a month. I want so badly to write more in 2018, but instead of wrting on this blog, I’m writing brief entries in my journal on my phone. I love it, don’t get me wrong, but I love my blog too.

It has been on my mind for a while to start writing in diary style on my blog. Of course, I can’t share everything I can in my private journal here, but I can share some things. I love the personal mental health bloggers who share what it’s like living with mental illness on a day-to-day basis. So for this purpose, I’ve created the “Diary” category on my blog. Feel free to skip these entries if you’re not interested in them, but if you are, I’d love to hear your thoughts. Today, I’m sharing about the first week of 2018, obviously.

The year didn’t start out that well. I was a bit overloaded and stressed out. I was perseverating on finding a good journaling app for my phone, because I badly wanted to start journaling privately again in 2018. I’ve tried a few apps on the computer and a dozen websites, but I can’t find any that work. By 12AM Monday, I said a quick “Happy new year” to my husband and sister-in-law, who was celebrating with us, only to return to my phone again. In the end, I found a great app: Dyrii. Still, judging by how easily I write this post versus my journal entries, I’m finding using Notepad on my computer is still easier than my iPhone.

I had been going to day activities as normal between Christmas and New year’s, so I only had Monday off, but it felt rather strange to return on Tuesday. I had been informed before the holidays that we’d be getting three new clients in my group at day activities in January. For those who don’t know, I go to a sensory-based group for people with severe intellectual and multiple disabilities. All clients except for me need help with their personal care. The reason this group still fits me is that I’m very easily overloaded and prefer the sensory way of learning. We currently have one group of six clients, including me, in the main room and two clients who are very easily overstimulated in the adjacent room. Come January, I and two of the other current clients would move into the adjacent room with these two clients who are already there. As it turned out, that hasn’t happened yet, because the new clients aren’t there yet.

The total group size will grow from eight to eleven. We won’t get extra staff. This was a stressor to me, as was all the talk about the one-on-one for two clients that needs to be well-arranged in order to make this work, as well as the talk about a client needing one-on-one for meals. It was suggested there’d be no more activities but just meals and personal care moments. This suggestion was made on Wednesday, when I was already pretty badly overloaded and stressed out. I tried to calm myself by thinking I could use my computer or phone if I wanted to do something but there’d be no support available. So I retreated into the adjacent room to use my phone, only to be overwhelmed by people yelling in the corridor. This sent me into full-blown meltdown. I mean, if I can’t use the adjacent room without being overwhelmd now, how will I do so once my two fellow clients join me? I know these are the quietest clients, but still.

Looking back, I am lucky that my staff didn’t see the entire event. I banged my head against a wall, which my husband later asked about whether it got me suspended from day activities. I only then realized that it could have. The only part my staff witnessed was me trying to run away and being pretty irritable. My staff took me to the snoezelen (sensory) room and I had to stay there for fifteen miutes. Then she returned and we talked stuff through.

I called my mental health team, which is a kind of team that always has a community psychiatric nurse on call during office hours, as soon as I got home. The on-call CPN advised me to always have a PRN Ativan with me. I used to always have one with me until my last overdose, when my husband took them away. I haven’t needed it since. The on-call CPN also advised me to call the out-of-hours phone number I’d been given last week whenever I need it. I had been hesitant to call them during the new year’s week-end, as I reasoned my husband was home so I should be able to work out things with him. I haven’t needed to call them since speaking to that CPN though. In fact, I’m pretty calm now. Maybe I needed to melt down in order to calm down again.

Self-Destructive

So #Write31Days didn’t work out, but not because I couldn’t be motivated to write. The reason was that, on Wednesday, I landed in crisis, took an overdose of medication and had to be taken to the hospital. I spent the night on the internal medicine ward and was medically cleared the following day. However, it took till around 5PM before I could see the consulting psychiatrist. She was a nice woman. I knew her nurse from the other time I’d taken an overdose last July. Nothing much has yet been decided, as the psychiatrist will speak to my CPN on Monday, but I was cleared to go home.

Today, I want to talk about harmful and self-destructive behavior as it happens in various mental disorders. Particularly, I want to relate it to what I assume are my current diagnoses: autism spectrum disorder and borderline personality disorder. Unlike what many people believe, the reasons for harmful behaviors are not either fully due to autism or fully due to BPD.

In autism, self-injury and aggression are common, but are seen as steretypical behaviors. For example, some autistics hit themselves as a form of self-stimulation. However, there is a common behaviorist phrase that says all behavior is communication. As such, autistics often also engage in self-injurious behavior to communicate pain, overload or frustration.

Here is where the lines between autism and BPD become blurry. After all, unlike what is commonly believed, borderlines don’t self-destruct “for attention” or “to manipulate”. Most self-harm to deal with strong emotions that they perceive as overwhelming. Whether these emotions come from within the person themself (as is often the case in BPD) or from external sources of frustration, may seem to be important, but it isn’t. A situation doesn’t make you self-destruct, after all. It’s each person’s choice, within the limits of their mind’s capacity at that particular point.

The reason I took an overdose on Wednesday, isn’t fully clear to me either. I do remember feeling sensorially overloaded with cold. I tried to warm up by going on the elliptical trainer. After all, I needed my exercise too, as I hadn’t worked out all week. I couldn’t find my sneakers or my sports clothes, so I tried for a bit to work out in my regular clohes, except for my vest. I was shivering though and this overloaded me even more. From that point, I don’t rmemeber much. I was feeling rather unreal, though I must’ve had some awareness of what I was doing, as I retrieved medications from various sources. Once the first pill bottle, which was the easiest to find, was down, I didn’t feel there was a way back.

So is this typical borderline behavior? Yes, in that it’s not stereotyped and was rather purposeful. It certainly wasn’t the stereotypical “cry for help” type of BPD behavior though. I didn’t want to call the out-of-hours GP and I had zero interest in being admitted to a mental hospital. I do think I need some more guidance, but not in the sense of somemone providing me emotional nurture.

In the sense of what caused it, it’s more autistic sensory overload and difficulty handling unexpected situations and frustrations. The help I requested when talking to the consulting psychiatrist was of such nature: I need some practical guidance on getting more structure in my day and dealing with unexpected situations. It may be my home support worker could provide this, or I may need my nurse from the assertive community treatment team for this. I also remember just now having discussed with my nurse a prescription phone call. This means that you can call (usually I think a max number of times a week or month) to a psych unit for support if you’re about to go into crisis. I will ask my CPN about this.

Disappointment #WotW

This week was a lot less exciting than last week. It was really a big disappointment. That’s why I choose this as my word of the week.

On Monday, I had an okay day. I went to day activities and made a simple soap. There was only one activity staff so I had to be able to do the soaping mostly independently. The staff complimented me on the fact that I was able to be relatively independent indeed.

On Tuesday, I was supposed to leave for the potential new day activity place at 10AM. Since I got up really early, I wanted to go to day activities at my unit for a bit before the cab arrived. Unfortunately, the day activity room was closed because there was no staff available. Both of our regular staff are on vacation and apparently all subs had to work someplace else. An E-mal had been sent out notifying the nursing staff that the day activity room was closed, but only the nurses at the locked ward had received it. I was early, so my nurse went to morning report or something after dropping me off. Twenty minutes later, I panicked because no activity staff had shown up. A nurse from the locked unit came by and informed me that the day activity room was closed. Fortunately, someone was able to call my unit so that a nurse could come pick me up.

The cab arrived exactly on time and drove me to the supported employment building in the city where the day activity place is. Supported employment has largely been discontinued, so the building now houses other services, like the day activity place. The cab driver at first couldn’t find the entrance. Once he found it, I announced my arrival to the receptionist. It turned out the day activity place was in a faraway corner of the building and you had to walk through many corridors to get there. I was nearly run over by a supported employment person on a forklift truck. Those long corridors and the forklift truck gave me the impression that I would never be able to get from reception to the day activity room independently. Quite a bummer.

I arrived in a cafeteria where a large number of people were drinking coffee and chattering. I was seated by a day activity staff and we chatted some. A consumer got seated across the table from me and tried to chat me up. Not what I wanted that moment. Finally, my independent consumer advocate arrived and we got talking about what I expected out of day activities. I mentioned my new hobby of soap making, but we didn’t go into that. The staff member talked about ceramics and such. I couldn’t follow half the conversation by now, because I was overloaded.

We went to check out the actual arts room, which was quite crowded too. It was a disappointment. Next Tuesday, we’re going to have a look at a day activity place that’s part of the same organization but in another city. This place is supposed to be a little less overwhelming. I hope so.

My mother-in-law came to pick me up and offered to have lunch together. We ate a delicious chicken salad at what my husband later said was quite an expensive restaurant. My mother-in-law had gotten the idea of eating out there and I wasn’t there when she paid for us, so I won’t let myself be consumed with guilt. When she dropped me off at home, I gave her one of the goat’s milk soaps with honey that I’d made last week. She did allow me to use the pic she took, but I wasn’t able to get it off Facebook. I slept the entire afternoon.

On Weednesday, I had a meeting at home with a person from the mental health agency’s home support team. Two people came by and they hardly introduced themselves. That set the tone for the meeting. The whole meeting was one big disappointment. It turns out they can only offer two hours a week of home support and you don’t get to be able to phone someone if needed inbetween appointments. I can’t remember much else, except that they asked me how I see myself in two years’ time. I couldn’t answer that question right then and they talked about how it’s my life and I need to be able to get meaning out of it and stuff. As if I don’t know that.

Finally, they said that I might benefit from the assertive community treatment team helping me and then home support coming by twice a week to unburden assertive community treatment. I’m not sure I want anything to do with this home support team at all, given how they treated me in this meeting. They were truly all patronizing and yet telling me I need to be able to do this and that and whatever. Since my current treatment provider is already trying to get me signed up for the assertive community treatment team, I’m not interfering with that. When the people left, I was so disappointed I had destructive urges. Thankfully, I got to go back to the institution that afternoon.

Thursday and Friday went by in a blur. I only went to day activities for a short while on Thursday, because a male sub who didn’t know stuff was there. My named nurse sent an E-mail to my psychologist asking her to schedule an appointment with me. I’d done the same early that week, but still my psychologist replied that if I wanted an appointment, I could contact her. Go figure.

Altogether, this whole week was filled with smaller and bigger disappointments. I am really hoping next week is better.

The Reading Residence

Hurricane #WotW

Yesterday, I bought the book Women and Girls with Autism Spectrum Disorder by Sarah Hendrickx. I have been on the verge of crying as I read it. Hendrickx starts the book by recounting her meeting with her son’s autism diagnostician, whom she tells that she herself has autism too. The doctor doesn’t believe her, because she can hold down a two-way conversation. Wham! I heard that exact same stereotype countless times before. Hendrickx replied that maybe it’s because she’s an adult and a woman.

Last Wednesday, I was trying to communicate the mind-blowing chaos of thoughts and emotions and sensations in my head that is casuing me to have great difficulty functioning. I’ve tried to communicate this ever since I entered the mental health system in 2007, but it doesn’t seem like this is of any importance to my staff or treatment team. My psychologist put it down as rumination in an E-mail to the psychiatrist, because I asked for a med review. The “hurricane in my mind” led to a crisis yesterday. For whatever reason, a psychologist – one I hadn’t met before – was sent to talk to me today. Usually this means I’m in big trouble, but he didn’t threaten any consequences.

I’m not sure whether an unquiet mind is common with autism or whether it’s purely a borderline thing. I sense that it’s more to do with my autism, because it is not the content of my thoughts that is distressing, but the chaos the thoughts, emotions and sensations create. As such, it is particularly hard to communicate.

Unfortunately, my unit is not equipped to deal with autism and I appear to function too well to be getting autism-specialized support. The autism center’s entire recommendation was thrown into the bin by my psychologist and now I’m stuck being sent to a treatment team for personalty disorders. I won’t say I don’t have BPD too, but I also have autism and need support for this. Unfortunately, because I can hold down a two-way conversation, the team thinks I’m not all that autistic at all. Maybe that’s because I’m an adult and a woman.

After all, I was utterly incapable of holding down a two-way conversation even when in high school. As I’ve shared before, I am perhaps the opposite of the old DSM-IV autism criterion which says that autistics do not spontaneously share their feelings or interests. Hendrickx does point out that autistic girls may superficially appear quite sociable, but show self-centeredness on a deeper level. That’s exactly me.

But I don’t care about behavior, at least not anymore. Medication has sedated me enough that I don’t exhibit many troublesome behaviors anymore. Perhaps this means I can now come across relatively normal, but I don’t feel normal at all.

Another thing that’s annoying about this is people constantly attributing thought processes to me that aren’t there. For example, when I reacted with irritability at a psychotic man on my unit who constantly talks to his voices, I was told that I should try to imagine what it’d be like to hear voices all the time. I can’t imagine what that’s like, though I do understand it must be very distressing, but my irritability was not out of anger with this guy. It was just that I was utterly overwhelmed. And just so you know: thinking that the hurricane in my mind is just a breeze, doesn’t make it disappear.

Due to the stress of making arrangements for moving to the tiny village, the hurricane, the chaos in my mind, has been particularly strong this week. Therefore, I choose “hurricane” as my word of the week.

The Reading Residence

What Sensory Overload Is Like

Today on The Mighty, there’s a story about people’s misguided perceptions of sensory overload. Mandy Farmer, the post author, describes several situations involving her son that are well-known to me. Though I’ve come to tolerate a grocery store, I still cover my ears when the music in a store is too loud. I still fidget and, though I don’t (usually) scream, I still react with frustration at my hair being cut. I still don’t attend many social events, because I find a baby’s crying or loud music or even lots of conversation overwhelming.

Overwhelming, exactly. But you see just behavior. I’ve actually had some nurses tell me that “this is behavior”. Duh! Every single action a person exhibits is behavior. You mean it is willful misbehavior, but 1. you don’t say so (this is my literal-mindedness acting up) and 2. I don’t think that it is.

People often see sensory overload as attention-seeking, as depriving the noise-making people of the right to make noise. *Yes, I’ve seriously been accused of that!) At best, like Farmer also seems to connote, they see it as anxiety, and anxiety is to be overcome with exposure.

I once, many years ago, read a description of what it is like to live with autism. The description of the sensory experience went something like this: imagine noise at the highest volume blasting in your ears, insects crawling under your skin, and bright lights shining in your eyes at the same time, while you’re having to eat the hottest type of peppers and the smell of rotten meat penetrates your skin. I bet those last two weren’t in there, but sensory overload affects all five senses. Now imagine not being able to escape any of these sensory experiences. Imagine what it’d be like having this experience 24/7. You’d go freakin’ nuts!

Sensory overload doesn’t always involve a cognitive appraisal of the sensory stimulation, like: “I don’t think people should be playing loud music.” It doesn’t even always involve fear-related appraisals, like: “This noise is a threat, I feel like it will damage my ears.” When it does involve these types of cognitive processes, we aren’t always aware of them. Older children and adults can learn to become aware of what is going on in their minds and register any fearful or angry thoughts they may have towards the sensory stimulus. Then they can begin to learn to adjust these thoughts. But when there are no such thoughts, or when the person is unaware of them, how will attributing their reactions to some type of willful behavior help them?

If noise were blasting at the loudest volume, bright lights were shining into your eyes, insects were crawling under your skin, etc., wouldn’t you feel pain? You would! Think of sensory overload as pain. And while cognitive and behavioral strategies can help people manage pain, attributing their pain-related behaviors to willfulness is not only insensitive, but ineffective as well.

Everyday Gyaan

Ten Patches This Autistic Person Could Use

The Golden Spoons

This is my first time participating in the Tuesday Ten. I’ve been wanting to for a while, but usually I found other things to blog about on Tuesday. Either that, or I simply forgot. The theme for this week is “I need a patch for that”, because this is the weird holdiay celebration tomorrow. Lisa of The Golden Spoons, one of the hosts, wrote ten patches every mother needs. I got thinking about that. I’m not a Mom, so I can’t really expand on those. Then I got thinking: what would I like patches for? And here’s a list of pathes this autistic person would need. Some of them can be seen as “cures” for certain symptoms of autism, while others are work-around patches and still others are patches for the social stigma and misunderstanding I encoutner.


  1. An anti-overload patch. Even though traditional autistic advocates say they would never take medication to hear or feel less, I certainly would. The thing about a patch, however, is that I can put it on and take it off again, unlike the daily medication I currently take for overload-caused irritability.

  2. An energy patch. Stole this one from Lisa, but I too think I could benefit from it. Living as an autistic can be quite exhausting, after all.

  3. A tolerance patch. To put on others when they have a strikingly intolerant attitude. Mostly staff, that is, so I don’t know how I’d get them to put it on, given that their attitude would prevent them from seeing they need it.

  4. A translation patch. I usually misunderstand people and, rather than putting on a “communicate like a neurotypical” patch, I’d like a translator that sits between me and the neurotypical.

  5. An easy text-to-speech patch. While we’re communicating anyway, I’d like to be able to write rather than speak. While text-to-speech apps are already available, I’d like one that I can easily use and that doesn’t make me look like a weirdo. I’d also like it to translate from speech to text (or braille, in my case). I’ve honestly been thinking of wanting a Communicator, which is a device used by deafblind people, but they’re very expensive and I’m not eligible for funds. i’m verbal, after all.

  6. A patience patch. Again, this one is stolen from Lisa, and I’d like to put it on others again, though I could myself use some patience at times.

  7. A perseveration patch. The good thing about patches again is the ability to put them on and take them off. Today, I’ve been looking everywhere for some perseveration, while at other times, I’m totally immersed in my special interest.

  8. An antidepressant patch. I don’t suffer from clinical depression, but I do have days when I’m very depressed. Again, like the anti-overload patch, this would seem like a better alternative to my current daily antidepressant.

  9. A patchwork weighted blanket: Lisa said patches can be any sort, so patchwork quilts are included. I’ve always wanted a weighted blanket, but never took the effort to find myself one.

  10. An executive functioning patch: something like an anti-procrastination patch, but it’ll also break down difficult tasks into smaller, easy-to-follow steps.

Note that every autistic person is different. This is why I referred to “this autistic person” in my post title rather than “every autistic person”. If you’ve met one autistic person, you’ve met one autistic person, after all. If you’d like to contribute what patches you could use in life, write a list of ten and hop over to Lisa’s blog to submit it.

Handling Tantrums and Meltdowns in Children with Autistic Spectrum Disorders

Many children with autsitic spectrumd isorders, including pathological demand avoidance syndrome, have meltdowns. They can have different causes. A child may act out because they’re impulsive and find it hard to delay gratification. This is different from being spoiled, although the difference may be subtle. I still act out when I ask for help and am not told when I can get it. If someone is clear when they can offer me what I need (I don’t act out for not getting something I merely want, for clarity’s sake), I usually don’t have a meltdown.

On the other hand, as a child, even up to early adolescence, I used to have tantrums when my sister got candy or a gift and I didn’t. This is not normal for a neurotypical adolescent, but that doesn’t make it not a tantrum. An autistic child beyond the typical age for temper tantrums may not be able to take the other person’s perspective, so they may feel they’re being mistreated. This can be explained in a social story, but if a child still tantrums when they’re simply not getting their way, treating it as a regular temper tantrum is best.

Some children or adults act out because they’re frustrated and don’t knwo how to solve a problem. This is something inbetween a temper tantrum and a meltdown. I often used to be frustrated if my computer was having problems, but I would not use strategieis that would solve the problem, either socially acceptable (asking for help) or not (screaming for help). In one case when I was sixteen, I totaled my computer trying to make it work again, losing five months worth of important documents.

According to Adelle Jameson Tilton and Charlotte E. Thompson, authors of The Everything Parent’s Guide to Children with Autism, 2nd edition, a child can also have a meltdown because they’re denied something they want, but they lose total behavioral control and don’t “switch off” suddenly again if the wish is granted. Children in a meltdown do not take precautions to prevent themselves from being injured. They will not care if someone is watching or reacting, and the meltdown winds off gradually. I had meltdowns often when I was at the independence training home, throwing objects in my own apartment while no-one was there. I did need help cleaning up the mess, but usually I had calmed down and wasn’t asking for what I had originally wanted once the staff helped me clean up.

From my experience, I can tell that a meltdown can also occur when I am overloaded either cognitively, emotinally or sensorially. I remember a few weeks ago completely melting down even though I had gotten the attention I’d wanted already, because I couldn’t cope with overwhelming emotions and had failed at channeling my overload. When later asked why I had had this meltdown, I had no clue. This is in my experience a distinctive characteristic of a meltdown: meltdowns do not necessarily have an underlying reason.

Meltdowns can also happen after a small seizure, according to Jameson Tilton and Thompson. I read in my neuropsychology textbook that aggression during a seizure is very rare and usually stereotyped, but aggression after a seizure may be more common. If a child seems to be totally uninvolved in their environment for a few minutes before mtling down, this could be a sign of a silent seizure.

In children with pathological demand avoidance particularly, a meltdown may come on as a result of anxiety. Phil Christie and others in their book Understandign Pathological Demand Avoidance Syndrome in Children, make a rigid distinction between aggression with the purpose of avoiding demands and meltdowns out of anxiety, but in my experience this distinction isn’t always clear. After all, demand avoidance often stems from anxiety and/or overload. In situations where an autistic or PDA child is overloaded or panicking, it is important that adults reduce the demands placed on the child, use simple language and do not enforce social niceties such as eye contact.

It may help to evaluate your own behavior as the adult managing a child’s meltdown. You can ask yourself whether the demands you placed on the autistic or PDA child were reasonable, whether they were truly non-negotiable (so that you were willing to endure a meltdown for them), whether you reacted properly or may’ve overreacted, etc. Remember, a meltdown, unlike a temper tantrum, is not a power play, and as a parent, carer or teacher you shouldn’t make it about power.

If the person who had the meltdown is an older child or adult, and you have a trusting relationship with them, involve them too in the evaluation process. (Note: if you do not have a trusting relationship with them, this is something you’ll need to work on!) Evaluating should be done in a non-judgmental way, avoiding the blame game. For some children, social stories may be appropriate, while others can tell you what you need to do differently to help them prevent or minimize a meltdown. This is again not to say that you’re to blame for the meltdown, but many children and adults in a meltdown do need external support.