Category Archives: Neurodevelopmental Disorders

My Autistic Experience: Repetitive and Steretoyped Speech and Language

I’d almost forget it, but this month, I’d actually intended to share my autistic experience for #Write31Days. I failed at the challenge, but that shouldn’t be an excuse not to share my experiences. Today, I’ll talk about speech and language.

I was originally diagnosed with Asperger’s Syndrome under DSM-IV. Asperger’s is basically autism without an intellectual disability or speech delay. The communication impairments criterion in autistic disorder does not appear in the criteria for Asperger’s. That doesn’t mean Asperger’s people don’t have communication impairments. I could’ve easily met the communication impairment criterion in autistic disorder if I’d been more articulate back when I was diagnosed in 2007. You see, I was asked to name examples of speech and language stereotypies I displayed and could come up with only one, which was dismissed. In truth though, my speech and language can be quite stereotyped.

The most noticeable form of steretoypical language for me is my use of particular words or strings of words in an apparently irrelevant context and/or in a repetitive way. For example, in around 2005, I’d say “Hey folks!” to practically everyone. Later, I also used to say “banana spider” at every opportunity. In time, between my husband and me, it got the meaning to communicate boredom or disinterest. As such, it’s become a kind of script.

My repetitive use of language can be helpful in my interactions with my fellow clients at day activities. My fellow clients are all severely intellectually, often multiply disabled. None of them can speak and many have severely limited comprehension of speech, but they respond with joy to my repetitive use of their names or nicknames in a particular tone of voice.

Speaking of tone of voice, I do not seem to have a monotonous voice, but I do know that my tone of voice can be steretoyped too. For example, I speak to each fellow client at day activities in a different tone when echoing their names.

I rarely if ever experience true echolalalia, in the sense that I’d repeat another person’s entire sentence. I do often find myself repeating one or two words though. I also regularly repeat my own words. Lastly, I do repeat sounds people make.

I have an interesting preference for complicated words over simple ones. Refer back to “banana spider” here. Also, the first word I ever spoke, at ten months of age, wasn’t “Mama” or suchlike, but “aircraft industry”.

Another interesting experience happened at my last psychological evaluation last spring. Not only did I name “Banana spider” as one of the first animals in a naming task, but on the IQ test, one of the questions was who was Mahatma Gandhi. Years back, I’d had the same question on an IQ test and accidentally said that he “fighted” for India’s independence. Now I knew I had to say he “fought”, but again, “fighted” slipped off my tongue. It isn’t that I didn’t know the past tense of “fight” in Dutch, but that the situation elicited this particular brain fart.

I’m sure most people use language in some steretypical ways. After all, the example of steretoypcal language I came up with in 2007, was my frequent use of expletives. That’s not uncommon, which may be why the assessor dismissed it. My use of repetitive language also doesn’t impair me that much and, like I said, it can be an asset. However, that doesn’t mean it’s not there.

Spectrum Sunday

My Experience with Professional Support for Autism #Write31Days

Yesterday’s post in #Write31Days was somewhat inspired by the day 3 question on the 30 Days of Autism Acceptance. The day 4 question asks about family and support. I may have to split this topic into several posts, as it is about both family and professional support. Today, I will talk about professional support.

I have been in the care system for years. As a child, I was in special education. As a teen, I didn’t get much in the way of professional support, but I sought it back out right after high school by going to a rehabilitation center for the blind. I was still undiagnosed at this point and I don’t think the staff had an idea that I could be autistic.

When I moved to an independence training home after the rehabilitaton program, the staff got to know me better and got the idea that I may “suffer from” autism. That was how the coordinator called it when she wrote my request for services for once I’d be living independently. I hated that word, “suffer”, but I’ll get to that at some later point.

Initially, the reason my staff wanted me to be assessed for autism was to confirm they were on the right track with their support approach. Obviously they weren’t, as they kept switching approaches and expecting little from me one day, then deciding all my challenging behaivor was attention-seeking and leaving me pretty much to my own rsources the next.

I was diagnosed with autism in March of 2007 and started meeting with a community psychiatric nurse (CPN) in training in April. Her supervisor was a bit of a weirdo, barely having read my records and making his own assumptions about what was going on with me. He was the first to mention impulse control disorder, which I got to be diagnosed with along with autism a year later.

The CPN-in-training herself was great. She gave me lots of coping tools, even though I didn’t fully understand the necessity at first. Unfortunately, as I was moving cities to go to univeristy, I had to stop seeing her three months later.

After being hospitalized, my interactions with nurses and treatment providers were quite varied. I had favorite and not-so-favorite nurses on each unit I stayed on. Particularly, my named nurse on the resocialization unit was great. So was the head nurse at that unit, who acted as a step-in named nurse to me too.

What I found the most helpful in a nurse, was if they took the time to really look at my needs rather than at protocols. That was clearly what I missed most at the last unit I stayed on. “Borderlines need to take responsibility,” a nurse – who later became one of my favoirte nurses at that unit – told me when I requested reminders to do my personal care tasks. I know that it wasn’t just that most staff didn’t believe I’m autistic, since they treated another patient with a more established autism diagnosis in a similarly dismissive way.

Now that I’m home, I think most of my staff do a good job of balancing protocols, which of course they have to adhere to, with meeting my needs. For example, my current CPN just reassured me this afternoon that she validates my need to be in a sensory group at day activities. She didn’t even say it’s not in line with my intelligence level.

My home support and day activities staff are great. My husband says it’s a regional thing. It isn’t, because the other day activity place I checked out and the mental health agency’s home support team, both of which are in the same city where I get my day activites, weren’t as accommodating at all.

Autism and Friendship #Write31Days

Welcone to day one of #Write31Days for 2017. This month’s theme on my blog is autism. One of the most characteristic impairments in autism, at least according to diagnostic criteria, is an impairment in social interaction skills. In DSM-IV, the diagnostic manual under which I was originally diagnosed, failure to develop peer relationships appropriate to developmental level was one of the impairmetns under the social interaction deficits criterion. “Peer relatioships” refers mostly to friendships, though I reckon it can refer to romantic relationships in adolescents and adults too. Today, I will discuss how autism impaacts my understanding of friendship.

Many years ago, I read an article by famous autism expert Tony Attwood on the topic of development of friendship skills. A typically developing child starts to develop friendship skills at around age three. They realize that friendship requires some level of turn-taking but their approach to this is egocentric, based on for example sharing of material goods or playing together. When someone asks why a person is the child’s friend, the child at this stage would typically respond: “Because they live next door.”

Children between age three and six are typically at this level. Autistic children (and in a way even adults) typically remain at this level longer. When I was nine, for example, I’d consider someone a friend because they gave me candy. Admittedly, I’m still at this level in a way, though I realize this is inappropriate. For example, when my now husband said that he was in love with me, I wasn’t sure whether to reciprocate it, since I didn’t know whether I liked him just because he was the only one who’d visit me in the psychiatric hospital. Also, I still can’t sem to move away from materialistic aspects of friendship like sharing candy.

At around age six, typically developing children move into the next level of friendship skills, which is based on shared interests and games. When asked why someone is a child’s friend, a child at this stage would say: “Because they let me play the games I want to”, “Because they’re nice to me”, etc. I relate to this level of friendship too.

Another criterion of autism in DSM-IV was lack of social reciprocity. This means that an autistic person doesn’t understand age-appropriate rules of give-and-take. Many autistic people can come across rather self-centered. So do I. For exampel, I rarelys hared candy (here we go again!) in the institution, even thoug I did accept it from others when offered. Give-and-take, however, seems not just based on material things and there aren’t many clear-cut rules for it.

I have a rather literal interpretation of reciprocity: when my husband, for example, gives me something, be it material or immaterial, I have to give him the same back. As such I feel extremely bad about being dependent on my husband for many things, like transportation, food, etc. He says that I give him love in return, but I barely understand the concept of love.

My Autism Diagnosis Story

The fact that I was rediagnosed autisitc, still feels unreal. As I read the report this evening, self-doubt kicked in. The psychologist who diagnosed me, didn’t feel a full developmental interview with my parents was needed, as I had had that done already in 2007 and there were enough reasons to diagnose autism based on the questionnaires my parents filled out. The report from the 2007 diagnostic assessment is gone though, which is one of the reasons for my soon-to-be former psychologist to have removed this diagnosis. I wonder whether my psychiatrist at the community treatment team will acknowledge this diagnosis. I hope she will.

I’m also not sure whether or how to break the news to the Dutch autistic community. As I mentioned on Monday, I was kicked off one autism forum for good, but I am still in others where I’m faced with suspicion. The international community is a lot more accepting.

In honor of my rediagnosis, I am starting the 30 days of autism acceptance, which I found out about last month. It’s mostly on Tumblr, but I can barely use that. The first question asks me to introduce myself, so here goes.

Hi, I’m Astrid. I am 30-years-old – the psych report says I look older,argh – and I live in the Netherlands. I was first formally diagnosed withautism in 2007 and last rediagnosed a few days ago.

The first time I became aware of autism, was sometime in 1998, when its genetic origin was discussed in a news program. Something clicked, but I
didn’t immediately think I’m autistic. I was only eleven or twelve-years-old,
after all.

Then, in June of 2002, my father stormed into my room in the middle of the night. “Are you autistic or something?” he yelled over my loud music. In hindsight, this was the weirdest reason to think a teen is autistic that I’ve ever heard of. After all, having loud music on late at night is pretty normal teenage defiance.

Somehow, something clicked again, and this time I had the Internet and could google autism. For the next nearly two years, I was obsessed with the idea that I may have Asperger’s Syndrome. Asperger’s hadn’t been merged with the other autistic spectrum disorders yet, and to be honest I was quite prejudiced against people with “classic” autism.

In April of 2004, it was again a comment by my father that made me stop thinking I’m an Aspie. There was a newspaper article about highly sensitive persons and the controversy around labeling pretty much everyone. My father offhandly commented that I’m an “asparagus addict”. My high school tutor, who knew about my self-diagnosis, had told my parents I was a “hypochondriac” for it and my father agreed. My mother chimed in that she’d googled Asperger’s and was sure I didn’t have it. That was the end of my “asparagus addiction” for over 2 1/2 years.

In late 2006, my support wroker at the training hoem for the disabled I resided at informed me they were sending me to mental health for an autism assessment. They had already scheduled the first appointment, in fact. I was studying psychology at college at the time and I thought I was doing a good job of it. I couldn’t, in my prejudiced mind, reconcile that with an autism diagnosis. Several months later, once diagnosed, I was happy for it. After all, I’d by this time been quite disappointed on my path in college and my diagnosis helped me get accommodations I wouldn’t otherwise have gotten. It also helped me delay my being kicked out of the training home.

I looked over all my previous diagnoses that were summarized in the report I read this evening. I was diagnosed with an autism spectrum disorder at least three times and that doesn’t include the early 2007 diagnosis. After all, the report on that one may’ve disappeared too and I forgot that it may be significant, as it was the only time a psychiatrist diagnosed me. Besides, it was the same mental health agency that my psychiatrist in the community treatment team is part of. If she decides not to acknowledge my rediagnosis this year, I may have to get her to retrieve what’s left of those records.

Mummy Times Two

My Diagnostic Rollercoaster Ride #BADD2017

Today is Blogging Against Disablism Day. It would also have been my discharge date from the mental institution. Unfortunately, virtually no after care has been arranged yet. This didn’t keep my psychologist from determining I could leave today, even despite my husband sending her an E-mail voicing his disapproval on Tuesday. I had my “exit meeting” on Wednesday. In this meeting, my psychologist explained that every other time, she and the social worker can get after care arranged within a month, so if we couldn’t get it arranged within three months for me, that was my fault. Apparently, they’d handed me the responsibility of arranging for my own after care, only without telling me. The patient advocate couldn’t do anything, because I’d have my first appointment with community mental health on Friday and that was all my psychologist was legally required to do in the way of after care. I called my mother-in-law in a panic. She convinced my psychologist to give me one more week in the institution. My definitive discharge date is May 8.

Today I also had my conclusive appointment for the independent second opinion/re-assessment I requested regarding my diagnosis. I haven’t yet seen the report, as the psychologist has yet to finish that, but she did tell me her conclusions. I am happy to share that I got my autism diagnosis back!

It’s pretty unreal. I feel the same way I felt when I was first told I had been diagnosed with dependent personality disorder. Only this time the dreamy state I’m thinking I’ll awaken from any moment, isn’t a nightmare. That’s not to say the psychologist’s opinions are all fluff. In fact, though she didn’t say this, it may be the psychologist agrees with my DPD diagnosis. Not that I care much, since the recommendations she made for reinforcing my independence were pretty good. Besides, by now I’ve been used to being seen as one little piece of learned helplessness. I guess that’s a form of learned helplessness itself.

It’s been one awful rollercoaster ride this past year or so. It started in late June of 2016, when my psychologist pulled me out of day activities to casually inform me she had changed my descriptive diagnosis. Since the Dutch health system is built around diagnosis-treatment combinations, I worried some. However, your DSM-IV (we still use DSM-IV here) classification, not your descriptive diagnosis, determines what care you can get, and my psychologist hadn’t said she’d changed my DSM-IV classification. She had, but I didn’t find out about that till more than a month later.

I remember vividly that same day telling a day activities staff at a place I wanted to do day activities at once discharged, that I was stuck in diagnotic limbo. Interestingly, I made an appointment for a formal intake interview just an hour before my appointment with the independent psychologist.

Then came the process of applying for an independent second opinion. I faced a lot of hostility during this process and I don’t just mean from my psychologist. I mean, my psychologist tried to keep the peace and calm by negotiating a diagnosis we both could live with. In hindsight, that’s the strangest agreement I’ve ever come to. However, the worst hostility came from within the Dutch autistic community. I was a member of a Dutch forum, where apparently you had to have an official diagnosis or be in the process of obtainng one to get in. Once I posted about my psychologist removing my autis diagnosis, my psychologist was treated like the ultimate autority on my diagnosis and the person who finally unmasked my manipulative nature. When I said I had been diagnosed autistic three times before, this was used against me. After all, how many second or third or fourth or fifth opinions do I get?

By early December, when I was denied access to said autism forum for good, I started taking into account the possibility that the independent assessor agreed I’m not autistic. I never fully got that into my system and that was what kept me going: I still had hope that my self-image wouldn’t be shattered to pieces. That I wouldn’t have to nearly drown for the rest of my life because my every support need is just dependency.

During January till mid-April, I sank to the lowest point I’ve been at for a long time. I was depressed and suiciidal and making plans for a final step. Because this was when my assessment took place, the psychologist believes I have depression. I clarified today that, while I’m always slightly depressed, it isn’t at clinical levels most of the time.

I am so glad the outcome of my assessment is as it is. Now I still need my new community treatment team to take into account this diagnosis. I’d rather not endure another rollercoaster ride like this.

Anxiety and Depression in Children With and Without Autism #AtoZChallenge

Welcome to day one on the 2017 #AtoZChallenge on neurodevelopmental disorders. I experience a great deal of anxiety around this challenge particularly because, like I said in my theme reveal post, I am currently in the re-assessment process. On the day I published my theme reveal post, I received an E-mail from the clinical neuropsychologist in charge of my second opinion answering questions I had taken to my psychological assessment. One of them concerned depression. I have suffered from depressive symptoms since childhood. I pointed this out, in a way to reassure her that depression is somewhat normal for me and hence she didn’t need to pull out the major depressive disorder criteria. A reaction i did not expect, was that depression presents itself differently in children and for this reason it might be that in fact my challenging behavior was a symptom of childhood-onset depression.

I share this story because, for today, I am focusing on anxiety and depression as they relate to autism. I will start by sharing a bit about how these conditions present themselves in typical children, as it might be I’m not autistic or suffering from any neurodevelopmental condition after all.

Depression and Anxiety in Typical Children

Depression and anxiety are serious conditions that are different from normal sadness or worry. Common symptoms in anyone with depression or anxiety include negative thoughts, excessive worrying, diffculty concentrating, feelings of hopelessness or worthlessness. Particulalrly in youg children, depression and anxiety are however hard to recognize, as they may present differently than they would in older children or adults. For example, depression may show as irritability and anger, withdrawal, vocal outbursts or crying, or physical symptoms such as headaches or stomach problems. Anxiety can also present with physical symptoms or it may show as developmental regression. Some children with anxiety disorders may become clingy, fidget a lot or go to the toilet frequently.

It may be tempting to label a child who displays disruptive behavior, such as irritability, as “naughty”. However, treating behavior related to anxiety or depression like it is willful defiance, will only make it worse. Rather, if a child shows significantly more behavoral issues than their peers, it is advised to seek professional help.

Anxiety and Depression in Autistic Children

Many of the signs of childhood anxiety and depression are common in autistic children. It may therefore be hard to tell whether a symptom is due to anxiety or depression or it is due to autsm. For example, many autistic children (and adults) fidget as a way of regulating sensory input. Treating this and other sensory difficulties as anxiety will make it worse, as treatment for anxiety might include exposure. If a sensory stimulus is physically uncomfortable or painful rather than feared, no amount of exposure will cure this.

Social withdrawal is also a common sign of both childhood anxiety and depression and autism. However, to autistic children and adults, social interaction is often overwhelming, so again, withdrawal may be a coping strategy rather than a symptom.

Interestngly, some autistics may appear less autistic when they’re depressed or anxious. This may be the case if the autistic’s normal social interaction style is “active but odd”, eg. talking on and on about a particular topic without regard for the other person. For example, I once read about a teenage boy who usually kept on talking about trains. When he stopped perseverating on this topic, his carers assumed he was doing better. After all, he was showing less socially disruptive behavior. In reality, the boy was seriously depressed. He was, for him, withdrawn and had lost interest in what used to be a favorite topic of his.

If I’m Not Autistic, What Am I?

My psychologist removed my autism diagnosis, which I’d been first given in 2007, last summer. After a long process of negotiations, she decided to diagnose me with dependent personality disorder, borderline personality disorder traits and depressive disorder NOS. I strongly disagree particularly with the DPD label, but more importantly, I want my autism diagnosis back. I requested an independent second opinion, which I’ll be getting the first appointment for this Thursday. Just this evening, I told a leader of an autism group in the Netherlands that I’d be closing the autism chapter if the second opinion provider agreed i’m not autistic after all. Then I’d definitively consider myself, well, what? I’ve rarely used the word “allistic”, which is someone who isn’t autistic. I feel that all people with neurodevelopmental conditions essentially fall on the same spectrum. Many autistics disagree and would not allow, say, a person with ADHD into their community. Indeed, if I’m not autistic, I’m allistic, period.

There used to be some concept of “cousins” in the autistic community, which included people with other neurological or neurodevelopmental differences, such as ADHD, Tourette Syndrome or hydrocephalus. Maybe I could consider myself a “cousin”, since I was at one point diagnosed with hydrocephalus and that’s a far more hard-wired diagnosis than is autism. So I’d be an allistic cousin to the autistic comunity. The concept of “cousins”, however, is barely accepted anymore.

Besides, it’s not just about community. It’s about identity. If I’m told that after all I’m not autistic, a vital part of my identity is being destroyed. Someone compared it to losing their status as an animal lover. It’s far worse. It’s like being told I’m not blind – there is another reason I’m unable to see, but that’s not called blindness. Besides, there’s no ICD-10 or ICD-11 or where are we these days code for it. This is analogous to what my psychologist has done with respect to my autism: it isn’t there, because there is another reason I have cognitive and sensory and social-communicative difficulties, but there’s no DSM-IV code for that.

It affects services, too. If I lost my status as a blind person, I would no longer be allowed to use my white cane. I would no longer be provided with reading materials in accessible formats. I would no longer have access to services for the blind. If there’s no ICD-whatever code for explaining my lack of sight, there won’t be any other way to gain access to these accommodations or supports. I can imagine this is in part the reality for people with conversion disorder manifesting as blindness, since some service and accessible reading material providers ask for verification of the “physical basis” of one’s blindness.

If I lose my status as an autistic person and there’s no diagnosis to replace it with, I’ll not be able to access services that take into account my cognitive, sensory and social-communicative difficulties. In fact, my psychologist has already voiced her disagreement with me applying for day activities for people with traumatic or acquired brain injury. She says I have “congenital brain injury”. At least, that was her reason for removing my autism diagnosis. Since “congenital brain injury” isn’t acquired or traumatic brain injury, I won’t qualify for services for that. Since in fact “congenital brain injury” does not exist in the diagnostic handbooks, there is no help for it. It’s worse even than conversion blindness, since that can be treated somehow.

Now imagine that I, who clealry has an eye condition causing blindness, were told I had conversion blindness for lack of a better diagnosis. That’s about what it feels like being diagnosed with dependent personality disorder as a clearly neurodivergent person.

It could be worse. I could be told I’m not neurodivergent at all. This would go beyond saying I am an unfortunate case of falling between the cracks with my useless diagnosis of “congenital brain injury”. To use the blindness analogy again, this’d be like being told I am fully sighted, yet only believe I’m blind for attention, because I don’t accept my status as a short person, or whatever nonsense claim people have made as to why I erroneously believe I’m neurodivergent. This is a possible outcome of my second opinion too. After all, though I have hydrocephalus, there is no proof as per a neuropsychological evaluation that this has caused me lasting impairments. My psychologist is of this opinion to an extent and so are my parents and sister, believing I have problems because I think I do.

Back to my autism diagnosis or the lack thereof. Some people say you’re autstic if you’re autistic no matter how many professionals say you are not. They say that, if support tailored to autistics, including being part of the autistic community, works, you must be autistic. With my poor self-image, I’m not so sure this would be the case for me.

Pathological Demand Avoidance (PDA) Awareness Day: My Life with Possible PDA Traits

Today, May 15, is pathological demand avoidance syndrome (PDA) awarness day. Pathological demand avoidance is a subtype of autism characterized by extreme anxiety, a need to resist everyday demands and a need to be in control. Core features include:


  • Passive early history in the first year, avoiding ordinary demands and missing milestones.

  • Continuing to avoid demands, panic attacks if demands are escalated.

  • Surface sociability, but apparent lack of sense of social identity.

  • Lability of mood and impulsivity.

  • Comfortable in role play and pretending

  • Language delay, seemingly the result of passivity.

  • Obsessive behavior.

  • Neurological signs similar to those seen in autism.

When I first wrote about PDA, I wasn’t so sure I believed in its existence. I recognized and still recognize many features, but the condition isn’t recognized in the Netherlands, so I can never be sure whether I have it. Also, I doubted whether my behavior may be a normal reaction to being in an institutional environment for too long. However, when I read stories from adults with PDA or parents of children with PDA, I recognize a lot. I am going to write about this now.

Pathological demand avoidnance is an autism spectrum disorder that shares traits with oppositional defiant disorder and reactive attachment disorder. However, children with PDA are not willfully naughty. The only rule I routinely broke was the one about not stealing candy. Then again, doesn’t every child do that?

I was a quiet child. However, i could show aggression seemingly out of nowhere. I acted out particularly when my parents or sister wouldn’t do as I said. For example, even as a teen I had no clue when it was not appropriate to demand my parents do something for me and I’d get upset if they refused.

I was an early talker and quite sociable as a young child. For example, I’d shout “Hi!” at everyone we met in the streets. This is expected in the tiny village my husband and I live in now, but it is definitely abnormal in Rotterdam, where I lived as a child. I was comfortable – perhaps too comfortable – in social interactions with strangers. As I grew older, this got worse. This is what got me thinking I might have attachment issues.

I was very comfortalbe in pretend play, but on my own terms. Autistic children don’t tend to engage in pretend play with other children, but I did. I however dominated the play situation. I was always the one who thought out the scernarios we were going to play. I also made the rules of what was “proper” pretend play. For instance, my sister could not say “My doll said ___”, because after all she was acting out her doll.

Most of my life, I’ve been able to hold down a conversation, again as long as it’d go on my own terms. I tend to dominate conversations and make them about topics I want to discuss. When this happened at my diagnostic assessment, my parents said I wanted to make conversation about me all the time. This isn’t necessarily the case. For instance, yesterday a Christian nurse and a patient with his own set of religious beliefs were discussing religion. It wasn’t about me at all and I didn’t make it about me, but as soon as i jumped in, I tried to control the conversation.

The core feature that got me thinking about PDA as applying to me, is however my resistance to ordinary demands. This may be an oppositional behavior too, but in PDA, the need to resist demands is not out of defiance. It seems to be more a core need stemming sometiems from anxiety and sometimes from sensory issues. For example, children and adults with PDA might refuse to brush their teeth when asked, but this is commonly out of sensory defensiveness. They may refuse to do household chores out of anxiety. Interestingly, they may do certain tasks that create anxiety in them when they’re asked to do them by others, when they are on their own. I can do household chores much more easily when I am the one in control or when I’m on my own than when it’s someone else demanding I do them.

Children and adults with PDA are often described as Jekyll and Hyde. They can act perfectly normal as long as they’re in control and their anxiety isn’t provoked. However, when people make demands of them or situations or people don’t follow their rules, they have rapid mood swings. I definitely relate to this and often wonder whether it’s my autism or a borderline personality disorder trait.

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

ZZZ: Sleep Problems in Autistic People #AtoZChallenge

Welcome to the last day in the A to Z Challenge on autism. In all honesty, I’m glad the challenge is over because it’s been exhausting to try to write each post and comment on other bloggers and all. Today’s post is themed appropriately for this sentiment: titled “ZZZ”, it’s all about sleep and sleep problems in autistic people.

Sleep problems are common in autistic people. Some studies estimate that as many as 80% of children with autism spectrum disorders have sleep problems. The most common problems in autistic children are difficulty falling asleep and awakening often.

There are many possible causes for sleep probls in children and adults with autism. Some early research shows that autistics show abnormalities in brain structures related to sleep. Research is also underway on autistic people’s levels of melatonin (the sleep hormone) and other chemicals released by the brain that are known for their function in regulating sleep.

Behavioral issues which contribute to sleep problems in autistics include poor sleep hygiene and problems with limit-setting. For exampe, a person may have difficulty stopping engagement in day activities. This could be because these acitivites are the person’s special interest, but it could also be that the person has trouble shifting from one type of activity (eg. gaming) to a very different activity (preparing for and going to bed). Of course, just like neurotypical people, autistic people suffer increased sleep difficulties when they’ve been engaging with electronic devices shortly before going to bed.

Some medical issues that are more common in autistic people can also cause sleep problems. These conditions include epilepsy and gastroesophageal reflux. Lastly, medications that are used for treating behavioral problems in autism, such as stimulants, can cause sleep problems too.

There are many ways in which an autistic person can improve their sleep or a parent can help their autistic child do so. For example, establishing a good bedtime routine and a healthy sleep environment can help. To be a good sleep environment, a bedroom needs to be quiet, cool and dark. For children and adults with sensory issues, this may be especially important. On the other hand, some people may actually benefit from listening to calming music while falling asleep.

Daytime behavior can also help establish healthy sleep. Exercise is good, but not too close before bedtime. Obviously, caffeine causes sleep problems. Lastly, naps are good for preschoolers but not older children. Avoid allowing your preschool child to nap late in the afternoon.