Monthly Archives: January 2014

Disciplining the Autistic Child

Many autistic people, if not all, exhibit challenging behavior, such as anger, aggression, obsessive-compulsive behaviors and sterotypical (self-stimulatory) behaviors. Whether and how you intervene with these behaviors, depends on their function. Autistic children exhibit normal childhood misbehavior too. For example, they may nag and tantrum when you won’t give them candy, refuse to tidy their room, or be rude. This behavior can be punished in the same ways that you would use for a same-age typical child, such as by time-out, loss of computer or TV time, etc. Take into account that some consequences may not work for your child. For example, an aloof autistic may find time-out comforting, and most autistics do not get non-verbal cues. Therefore, even with an older child, you need to say explicitly that you are disapproving of their behavior. You also need to make sure the autistic child understands what they are punished for. If they are rude, for example, explain what they said that was rude, how they can make amends, and what they need to do differently the next time. When sending a child to their room, onto the naughty chair, etc., make sure they understand when they can come back. I was often sent to my room and stayed there for hours because I didn’t know when it was okay to come back. Don’t tell a child to come back when they “can behave”. Instead, set a specific time or make concrete rules on what they must do to come back.

As I said, whether and how you intervene with your autistic child’s behavior, depends on its function. Often, a function is presumed based on typical chhild development. For example, suppose your child refuses to tidy their room. You assume they are defiant or lazy, but do they know how to tidy their room? Even if you’ve shown them before or they’ve helped, you cannot expect all autistics to know when or how to do their own tidying or cleaning. I remember when I went to live independently out of an independence training home, my support worker told my knew staff that I knew how to clean. I did, but I had no idea where to start in my new apartment. This may in part be due to blindness, but even as I became familiar with my apartment, I still didn’t know how to organize my cleaning.

Then there are those behaviors that are often due to autism, such as sensory overreactivity, self-stim, or meltdowns. Give yoru child a time and place to engage in self-stim or compulsions, of course with the premise that they won’t damage property or harm themself or others. In 2007, when I was diagnosed with autism, my diagnostician told me that I really needed to unlearn to twirl my hair. Indeed, my parents had told me countless times that I needed to stop this behavior. While it is true that it is annoying and distracting to others, autistics need to be allowed their time to stim. Home is where a child should be safe to be themself. When talking about self-stim and how annoying it is when it’s an autistic doing it, I often refer to a lecture I was going to in college prep. Two students were modeliing appropriate and inappropriate communication skills in their filed. One of them was constantly clicking his pen, and I was assuming at first that this was meant to be inappropriate. It wasn’t. My point is, neurotypical people stim too.

When an autistic person becomes aggressive, be it verbally or physically, you need to intervene. However, it is still important to recognize the function of the aggression. For example, if a child constantly screams or hits when there’s loud noise, screaming at them to stop, will make it worse. Time-out in a quiet place where the child can rage away may be the most appropriate intervention. I strongly disagree with locking up an aggressive person in their time-out area unless there is no other way (except for restraint) to get them to stop. Locking the child up should never be used as a threat or for punitive purposes, and I doubt its effectiveness for verbal aggression. That may be my blindness though, as verbal aggression to me is as scary if it happens in the locked room next door. As for restraint (physically holding the child down), that’s only okay if a person is physically aggressive towards people.

One important point I want to make to finish off: be mindful of your own feelings when handling your autistic child. The moment you start feeling powerlessness or feel you’re going to lose your temper, step back. My parents often lost their temper with me, and this usually only made the situation much worse. I won’t say that you can always feel calm when handling your autistic child’s behavior, but strong emotions can be best handled away from your likely already distressed child.


Autism and Elopement

As a teenager, I ran off quite frequently. Sometiems, I started off with a purpose, such as going to the mall, but I ended up lost and then wandered off in a meltdown. Sometimes, I ran away because of an argument with my parents, because I was overwhelmed, or for no apparent reason at all. Running off is pretty common in young children and teens, but when you have disabilities, it complicates the matter. For example, I would not as easily have gotten lost on my way to the mall had I not been blind. Parents of autistic children often talk about elopement as if it is somethig unique to autistic children. This is of course not true – neurotypical children elope too -, but, when a child has social and communicativve difficulties, elopement does become a more dangerous thing.

In The Everything Parent’s Guide to Children wiht Autism, 2nd edition, by Adelle Dameson-Tilton and Charlotte E. Thompson (2012), there’s a specific section on elopement. Strategies advised to prevent it include the usual: put extra locks on doors to the outside, install an alarm system, etc. However, the authors also advise parents to establish a routine whereby the child knows when they can and can’t leave the home. For example, for a young child, they can’t leave the home unsupervised. Evene as an adult, I need to have a routine that says I can’t leave the ward unsupervised unless I have a specific goal and know the way there. Most autistic children outgrow elopement, but some do not. I feel that, especially with older children, explaining elopement and why it is dangerous, is vital. Social stories or pictures may help with this. The reality is, even on locked institution wards, people elope, and there are no places in the care system where your autistic (adult) child will get the one-on-one supervision you might provide them at home.

Jameson-Tilton and Thompson advise always informing trusted people in your neighborhood and the local police of your child’s risk of elopement. When I lived indpenednetly, I didn’t inform the police, but they got to know me soon enough. As Jameson-Tilton and Thompson suggest, a MedicAlert identification bracelet may be useful. In the Netherlands and I believe many other countries too, autism cards are sold which have a few key points about autism on them and on which you can write your name and an emergency contact number. For non-verbal autistics, an identification bracelet is still needed, because reaching in your pocket wihtout warnign may be interpreted as dangerous by the police, so you will need to be able to say that you have a card which explains your disability.

Emotion Regulation Skills for BPD Sufferers

In the Netherlands, borderline persoanlity disorder is sometimes also called emotion regulation disorder. There were in fact psychiatrists advocating for this name change in DSM-5, but it didn’t happen. Indeed, I myself notice that emotioon regulation problems are, besides having little sense of self, the most prominent symptom of my BPD. Tonight, I noticed how being told that I had to ask a fellow patient to help me with something minor rather than a staff member, set into motion a train of emotions and behaviors that I now realize, at least to some extent, was uncalled for.

Learning to regulate emotions does not mean stuffing them. Rather, it means observing and describing your emotions, decreasing your vulnerability to negative emotions and increasing positive emotions. Identifying what emotion you are feeling is usually the first step, and it can be especially hard. Many people, even those without mental illness, learn that certain emotions are not allowed, so they convert them into others. I for one often act angry when I’m sad or overwhelmed. However, all emotions have value.

Changing emotions requires first observing them without judgment, then letting go of them through for example mindfulness. Mindfulness allows you to experience the coming and going of emotions like a wave. In mindfulness, you shouldn’t try to block or suppress an emotion or try to keep it around. Rather, let emotion run its natural course.

This does not mean acting on emotions the moment they come up. We are not our emotions. Therefore, another step in emotion regulation is choosing whether to act upon your emotion. This seems impossible at first – at least, it does for me -, which is why mindfulness is important. When you have chosen to challenge an emotion, some therapies, like dialectical behavior therapy (DBT), explicitly teach acting opposite from the emotion. The most useful example of this I’ve heard is from a woman who suffered from bipolar disorder. When she was sliding into depression, she was encouraged to become active, while she was encouraged to take it slow when she was climbing towards mania. Other therapies, like rational emotive therapy, emphasize the fact that an emotion doesn’t come out of the blue, and encourage sufferers to challenge the thoughts that lead to their emotions. I believe that challenging cognitions may be best done when emotions are not overflowing you.

Teaching Your Autistic Teen About Hygiene

Many autistic people have trouble with self-help skills, like clothing and personal hygiene. I hear on many autism parent blogs that their child cannot bruth their teeth independnently, is incontinent at an age where accidents are no longer normal, etc. These are obvious self-help difficulties, but there are many more subtle problems with hygiene that even many more capable adult swith autism deal with.

First, many autistics are unaware of the social rules of hygiene. I remember my sister gave me deodorant for my fourteenth birthday and I still didn’t get the hint. I didn’t have an aversion to grooming as much as I was unaware of the changing rules that came with puberty. Similarly, I remember going to the school doctor at age fifteen and, when being asked to undress, realizing I’d forgotten to put on a bra. It is important, when teaching autistic children and teens about hygiene, to explicitly talk them through the changing norms that come as your child ages. Just because your teen boy knows how to work a shaving tool, doesn’t mean he knows or remembers when to use it.

Another problem in self-care may be an autistic person’s sensory aversion to certain tastes or textures, such as that of certain clothing, shampoo or toothpaste. With regard to clothing, comfort goes before style. It’s okay to tell your child that children aged twelve don’t usually wear sweat pants, but don’t ridicule them or try to force them to wear jeans if they’re uncofmortable. If your child is bullied, that’s not their fault even if you as the parent too see them as an easy target. Don’t make it worse by blaming yoru child.

Whn it comes to hygiene, sometimes comfort has to go. I for one refused to use toothpaste until I was eighteen, because even the kids’ toothpaste had too sharp a taste for me to cope with. I started usign toothpaste only because having the dentist need to fill seven cavities was worse. A few years ago, I again developed a problem with toothbrushing that I still haven’t gotten over.

Lastly, this may seem a bit TMI, but please do teach your autistic preteen girl about menstruation. It can be a very scary experience having your body change in general, and menstruation is overwhelmign to many NT women. Therefore, it’s logical that it causes great distress to many autistic teens. Preparing your teen for what will come can be done using simulation, such as with red wine on a pad. That’s what some kids in my sister’s class did when doing a presentation on puberty. Again, remind your daughter to take pads with her at all times. If menstruation is too overwhelming, your teen girl may consider birth control. Most birth control pills cause lighter, shorter, more regular and less painful periods, while some birth control methods eliminate periods completely.

Sleep Strategies for People with Autism or ADHD

For as long s I can remember, I’ve had skewy sleep patterns. I either slept too little, too much, at the wrong time, or didn’t feel refreshed during the day. Sleep problems are pretty common in people with neurodevelopmental disorders like autism or ADHD. It is not fully understood why autistic and ADHD people have sleep problems, but there may be several reasons, such as fear of going to sleep (due to for example fear of the unknown) and difficulty breaking out of routines. I for one have a terrible time switching from one activity to another, and that includes shifting from waking to sleeping and vice versa. For people who have ADHD, both its symptoms and the medication taken for it may also keep you awake.

There are many strategies for people with autism or ADHD to use in order to get a better sleep/wake cycle and more refreshing sleep. on the World of Psychology blog, Margarita Tartakovsky lists some strategies for adults with ADHD, many of which can also be used by autistics. For example, it is important for autistics to realize the importance of sleep too. It may be useful to have someone create a social story for you to learn why and when to sleep. If it’s possible, create a separate sleeping space. Use your bedroom only for sleeping or, if that’s not possible, at least don’t take your electronics to bed.

Sensory issues may also be a factor in difficulty sleeping. Tartakossky suggests using noise-canceling tools for sleep, but some people can’t sleep without sound. For them, it may be useful to listen to music while in bed. Maybe a plain and simple MP3 player is best rather than your smartphone, on which you can be tempted to chck Facebook rather than just listen to music while falling asleep. In addition to sound, consider smell and light in creating a comfortable sleeping space. Again, some people like a certain smell, such as lavender, in their bedrooms, while others hate any smell. Some people, even adults, need a small light on while sleeping, while others need complete darkness. It may be hard to know whicch level of sensory stimulation is most comfortable to you, so it may take some experimenting. That’s okay. You can’t get a proper sleep/wake cycle in just one night.

Be Joyful, Be Patient, Be Faithful

“Be joyful in hope, patient in affliction, faithful in prayer.” (Romans 12:12 NIV)

Often when I turn to the Bible, to devotionals, or to other Christian writings or even music, I find myself drawn to verses that give hope, let me know that I’m not alone if I have faith in God. I do not turn to the Bible to dictate the morals I need to live by day-to-day, because I personally believe the Bible was inspired too much by the culture of its time for this. Rather, I look to the Bible for guidance in my spirutal life and my relationship with God. This verse speaks to this relationship and to how we as humans need to invest in it.

Be joyful in hope. Often, I find myself taking up the Bible and generally investing in my relationship with God only when I’m suffering. This verse calls upon us to also share in God as we have hope, and to be thankful to God for the works He does. This does not mean we need to praise God for every ounce of food we eat. In fact, praying for food has too much of a ritualistic connotation for me, as I was required to participate in it in school as a non-religious child. Rather, we need to be appreciative in our hearts, which God knows.

Be patient in affliction. Many people often wonder when their suffering will finally pass. This verse asks us to be patient while God meets our needs eventually. Often I and many others find ourselves falling into the trap of demanding instant gratification. However, other people are not required to fulfill our every wish, and, while God may possess some kind of magic wand, He is certainly not supposed to wave it whenever we think we need Him to.

Be faithful in prayer. God knows our needs, and He cares. Remember, needs are not wants, and we need to be patient for God to meet our true needs eventually. Being faithful in prayer means trusting God to take care of us when we’re having a hard time, and also being thankful for His caring when we’re doing well.

This verse, exept for the words on prayer, actually also speaks to non-Christians. If you believe in some other deity or spiritual figure, or even if you’re an atheist, you still need to be appreciative of what you have when you’re faring well, and patient for time to pass when you’re not.

What’s in a Name?: Autism Subtyping in DSM-5

Recently, there appeared an article in the Journal of Autism and Developmental Disorders on why autism should be taken apart. I have not read the article yet – going to do so after I’ve had a good night’s sleep -, but I have read Harold Doherty’s comments on it. They follow the usual autism awareness rhetoric: my child is not like autistic advocates and therefore autism must be taken apart. And oh by the way, the DSM-5 is bad for calling the entire spectrum by the same name.

Let’s focus on that last bit. I own a copy of the DSM-5, and in the criteria for autism spectrum disorder, there are specifiers for:

  • With/without accompanying intellectual impairment.

  • With/without accompanying language impairment.

  • Associated with a known medical or genetic condition.

  • Associated with another neurodevelopmental, behavioral or mental disorder.

Furthermore, most people in the autism community know this, but there are three severity levels with coding of severity on each of the two symptom domains: social communicative impairments and repetitive behaviors.

Let’s contrast this with the DM-IV, which people like for its distinciton between Asperger’s Syndrome and autistic disorder. Anyone who has a communicative impairment, which could be just being unable to hold a conversation, and meets the criteria for Asperge’rs, could be labeled with autistic disorder. In fact, many of the autistic advocates Doherty and others disagree with, have an autistic disorder diagnosis. In terms of severity, also, the DSM-IV is pretty rigid in its focus: you only get the GAF scale, which determines a patient’s global level of functioning. I have a GAF score of 40, which means severe impairment in severeal areas of functioning. It is not stated whether this severe impairment is due to my autism or my borderline personality disorder or even due to the many labels I have on axis III (general medical conditions) and IV (psychosocial functioning).

I am not against subtyping of autism. In fact, I completely see how intellectual disability, language impairmetn, associated medical conditons such as epilepsy, etc., make a huge difference in an autistic person’s functioning. What I am completely against is the dichotomous taking apart of autism that Doherty etc. so often advocaate, where you eithr have Asperger’s (ie. social ineptness) or you have low-fuctioning, severe, classic autism. This dichotomy means that people who have severe impairments in self-care skills but, say, an IQ above 70 and no language impairmetns, are denied services on the basis of being merely socially inept. I don’t need to go into the consequences of this.

Taking on New Crafting Challenges

One of my goals for this year was to spend more time on my hobbies, which include blogging and crafting. As you can see, I’ve been fairly active in the blogging department. I’ve also spent quite some time crafting. Last week, the idea of taking on new crafty challnges set out in my mind. While I stuck with cardmaking, I did try a new technique and finally got to use the orca brads that have been lying in my stash forever. I hope this is indeed the right image as I keep forgetting to give my cards descriptive file names.

Card with Orca Brads

The card base is off white and 10×10 cm (around 4×4 inch). I got it from a cardstock pack I found at the local supermarket a while back. On top is a layer of blue cardstock thaat’s 8×8 cm and came from the same pack. The top layer is stuck on the base with 3D foam squares, so it is a bit raised. I stuck the brads into the top layer, which was really hard and with which I needed tsome help. I don’t know what color the brads are. In the four corners of the base are blue pearls.

Then this week the activity staff who came around on Monday brought some die-cut images. I had never worked with die-cut images except when someone sent me readymade ones, but I was excited to try them out. They are to be punched out, which I did on my own. I got help positioning the parts of the image correctly. The card I used was readymade. I am really looking forward to going to the store these images were bought at so that I can buy some myself someday.

Card with Die-Cut Image

Acrostic: Self-Care

I usually check out the blogs of people who comment on mine, so today when This Busy Life commented, I went to hop over and read this post. It was written based on a writing prompt from Lemon Drop Pie, anoher blogger I had discovered earlier this week. The theme for this week’s spin cycle (which seems to be a sort of link party) is your word for 2014, and today’s prompt had bloggers write an acrostic poem on it. I had to read both This Busy Life’s acrostic and the example in the prompt to decipher what an acrostic poem is. For those who don’t know and want a straight-out explanation: an acrostic is a poem or other form of writing in which the first letter, syllable or word of each line, paragraph or other recurring feature in the text spells out a word or a message (Wikipedia).

I am not sure whether I can add my post to the spin cycle (the Linky tool is inaccessible), but I’m going to try to writ ean acrostic on my word for the year, which as I’ve said previoously is self-care. I’ve not written poetry in years, but we’ll see what comes out of my fingers.

Self-desturction may be an issue
Eating disorders, self-harm
Letting yourself suffer in silennce
Feeling not the least bit of calm

Care for yourself this year though
Allow yourself to let go of the past
Reclaiming your life through self-care
Empowers you to feel free at last

Blog for Mental Health 2014

Just a few minutes ago, I discovered Blog for Mental Health 2014, and I was excited to participate.

Blog for Mental Health 2014

I pledge my commitment to the Blog for Mental Health 2014 Project. I will blog about mental health topics not only for myself, but for others. By displaying this badge, I show my pride, dedication, and acceptance for mental health. I use this to promote mental health education in the struggle to erase stigma.

Now, why am I blogging for mental health? Those of you who’ve visited me before, will know, but for those who don’t, here’s a little about my lived experience. I have suffered from mental health problems for a slong as I can remember. My first encounter with the mental health system was in 2006, when I was being assessed for and eventually diagnosed with autism. I later got additional diagnoses of dissociative identity disorder and post-traumatic stress disorder. These diagnoses were replaced by a diagnosis of borderline personality disorder in 2013. I have resided in a mental institution for over six years, and have met many people with various mental health conditions this way. I have also experienced first-hand the stigma that comes with mental illness. Therefore, I blog to raise awareness for mental health this year.