Monthly Archives: November 2013

Seven Things This Autistic Person Is Thankful For

Vicky over at Single Mother Ahoy is hosting a link party on the topic of gratitude this week. I came across it by chance while surfing Google+ for interesitng blogs then clicking through, and I thought I’d participate. Now I already did a (twisted) gratitude post on Thursday, so for today I thought of Ellen’s 15 things special needs parents are thankful for, and I thought I’d do one myself. I am not sure I can get to fifteen, but here are some things autistic people are thankful for. Or at least, this one autistic person is.


  1. Understanding family and friends. I have found in particular that my husband is very understanding of my differences.

  2. Friendships with other autistics. I am not too sociable in real life whether it’s with autistics or neurotypicals, but I appreciate online friendships with other autistics.

  3. Technology. Oh, where would I be without it?

  4. An Internet connection. You may have technolgy, but in this institution I reside in, wifi is not provided, so I’m glad I have my own mobile plan on my laptop.

  5. Empathetic support staff. I know some staff can be hellish, but many are very understanding.

  6. Quiet time. On a ward with eleven people, I appreciate every mooment when it’s quiet enough that I can blog.

  7. Hobbies and crafts. I wouldn’t know what to do with my time if I hadn’t discovered crafting or writing.


So, that’s seven. I might be able to think of more and am open to suggestions.

Appearing More Autistic After Diagnosis

A few days ago, Autistic Aloha wrote post about being born autistic and, hence, having been autistic long beofre his diagnosis. I want to write today about one issue which he raises: the idea that autistics appear more autistic after they’ve been diagnosed. I have myself been accused of this, and I say accused because people inevitably see it as something negative. I also have been told that I use my autism diagnosis as an excuse to act more autistic while having the ability (judging by my prior appearance) to act more NT.

This is assuming first that acting NT is always better than acting autistic. I personally don’t think so: unless the autistic is exhibiting dangerous behavior, there is no need to assume that something is bad just because it looks autistic. I know that autistic behavior makes NTs uncomfortable, but so what? Some NT behavior makes me uncomfortable, but I have no right to tell you to stop acting NT.

Even going along with the idea that autism is intrinsically negative, who are you, neurotypical observer, to judge whether an autistic is truly capable of acting more NT than they do post-diagnosis? What if the autistic, like I myself, has always felt gravely overburdened by the expectation of normalcy, and is dropping the fa├žade for their own mental health? This is very commonly the case. After all, especially in cases of adult diagnosis, many autistics come into services because they’re burned-out, depressed or otherwise suffering. I have met few autistics who seek help for their autism (not just a diagnosis for self-understanding) because they’re flapping their hands, having difficulty making eye contact, or misunderstanding neurotypical humor. I myself sougt help because I was having terrible meltdowns due to overload. Now as I said, meltdowns are dangerous, so I can see why you’d want me to unlearn those, but I’ve been told I was appearing more autistic for being more reactive to sensory input without becoming aggressive. This was in turn said to be a case of me using autism as an excuse.

Well, I’m not saying that autistics by definition cannot use their autism as an excuse for misbehavior (yet see above for my take on autism as misbehavior). They can and do. What I am trying to make clear is that perceived excusing may be something totally diffferent even in cases of harmful autistic behavior, such as meltdowns. This does not mean the autistic should be allowed to continue to melt down. However, if you assume the meltdowns are willful, you’ll employ a totally different intervention than if you assume the autistic is responding to genuine overload or burn-out.

Twisted Thankful Thursday and a Card

It’s Thanksgiving in the U.S., but today, I have a hard time feeling thankful. Yet I want to turn my disappointments into opportunities. Like, I got kicked out of the comment exchange group that’s gotten me most traffic to this blog in the past couple of days. I don’t know why and the onwer didn’t bother to send me a message. Like, I had been accused of posting negative comments, but had apologized because I was unaware that most people want positivity only, not just on their blog posts but on the prodducts/recipes/etc. they are writing about. I don’t see why I can’t say that a recipe that’s loaded with cheese is not for me, but well. Anyway, turning this into an opportunity means I can again blog about what I want without needing to take into account readers whose only reason for checking out my blog is that they have to.

I’m also thankful in a similarly twisted way for having dropped out of a Chrismtas cardmaking challenge a few weeks ago. This was costing me a lot of energy and leading me to create quick cards that should’ve landed in the bin right after posting them to the chalenge group. (The other members don’t judge my cards because they know I’m blind, which I’m not sure what I think of it.) Now I have more time and energy to devote to making better cards, and honestly I’m pretty satisfied with this one. Of course it’s not as good as a card made by someone who can see, is not as clumsy as I am, and has been making cards longer, but this one is okay with me.

kaart086

For the flower, I used Nellie Snellen dies. I embossed the side strip with a Cuttlebug embossing folder. The yellow and pink cardstock I used for the flower and side strip come from a large Bazzill cardstock pack. The purple base comes from a pack I bought at the local supermarket.

What Is a Sensory Diet?

Sensory processig disorder (SPD) refers to a group of disorders that cause problems regulating and processing sensory input. Sensory issues can also be prevalent in autistic individuals. I for one have strong sensry needs, and have lately considered creating my own sensory diet.

What is a sensory diet? It involves all sensory input we deliberately create to meet a person’s sensory needs. I reckon it can also be sensory input we remove, because some people actually get overloaded by certain stimuli. In sensory integration dysfunction, a particular type of SPD, people roughly fall into two types or a combination of both: sensory seeking and sensory avoidant. I for one avoid certain stimuli and crave others, which both can be addressed in a sensory diet.

Here are some examples of sensory activities and input you can use in a sensory diet:


  • Fidgeting. This is perhaps the easiest to incorporate, as anyone can be fidgeting. It may be necessary to teach yourself or the sensory person in your life to fidget in a non-obvious way as to minimize social stigma. Then again, consider also educating the people aroudn the sensory person about toleracnce of varying sensory needs.

  • Weighted blankets or vests. I have not found a weighted blanket in the Netherlands, but honestly have not been looing yet. A weighted blanket, as the term says, is a blanket with extra weight added to it to provide deep pressure. Even people who may be sensory avoidant towards the slightest stimuli, may like this. A weighted vest should not be worn all day. I don’t know about a weighted blanket for sleep.

  • Play dough or clay. Use play dough for a younger child and perhaps some type of clay for an older child or adult. I prefer polymer clay to earth clay because it gets less messy.

  • Swinging, jumping, running, exercise. This seems more appropriate for a child, but then again sensory needs don’t cease to exist when a child grows up. Adults might like to swing too. As an alternative if no swings are available, consider certain types of exercise.


These are all activities for the sensory seeker. For the sensory avoidant person, you may need to eliminate certain stimuli. For example, a person might want to choose dim lighting in their house (I realize this is not an option in schools or public places). There are lamps that shine upward to provide a more even lighting experience.

Most SPD people have trouble integrating multiple stimuli. Avoid having the radio or TV on when talking to them for this reason. It may seem like an inconvenience, but please realize most SPD people are already overwhelmed by the lighting in a room and ordinary sunds that cannot be eliminated. Note please that thoughtless exposure may ultimately teach a sensory person to avoid meltdown, but will not get them to avoid overload.

Can Gender Identity and Sexuality Be Fluid?

Two weeks after I was hospitalized, my parents cameto the psychiatric hospital to speak to my doctor. They said that I wanted to be different in all sorts of ways, and one of hteir reasons of thinkign so wast hat I used to identify as lesbian. I wasn’t sure at the time whaht sexual orientation I identified with, and still am not, but it’s a fact that I’m now married in a heterosexual relationship.

Can sexual orientation and gender identity be fluid? I think so. That is not to say that it isn’t static for some, or that it can or should be changed from the outside, but like in my own case. I was in love – or what I thought of as being in love – with some girls first in the eighth or ninth grade, then in eleventh grade fell in love )or again, what I thought to be falling in love) with a boy, now am married to a man. Does this mean I was never a lesbian? Does it mean I am bisexual, bicurious, pansexual, or heterosexual posing as queer for the sake of beign different? Does it really mater? I’m happily married, so isn’t that the thing that counts?

In a society that fully accepts variations of gender identity and sexual orientation, we would be allowed to shift along the spectrum. We wouldn’t even need labels for our identities except in the sense that we needed to identify who we’re attracted to on dating sites. I guess we’ll not get to this point anytime soon, but I don’t think queer people are to blame for apparntly alienating themselves. HOneslty, I feel that if society isn’t fully accepting of the whole spectrum of experience, it’s not all that strange that queer people feel different, because, after all, they are.

Personality Disorders Do Not Make You Unloveable

A while ago, I mentioned having read in a women’s magazine about two people who were parents of adults with borderline personality disorder. I just reread these stories, and the first one attributed all his daughter’s unfavorable characteristics – the fact that she only came around when she needed her parents, the fact that she wouldn’t allow the parents to see her child, etc. -, to BPD. This is a pretty common theme. If you c heck out any site for family of borderlines, you’ll see that borderlines are inevitably characterized as unloveable and their unloveability is inevitably due to their BPD.

Let me set this straight for you: no mental illness makes a person intrinsically unloveable, except maybe in certain cases where the criteria of that mental illness are inevitably bad, and then we’re having a circular argument. I’m talking about psychopathy, for example, but even people with this condition may want to heal.

Borderlines and others with personality disorders more commonly than those without them have characteristics that are undesirable. For this reason, a personality disorder may cause someone to appear unloveable, but then it’s still not that personality disorder in itself that causes it, but the way the patient chooses to handle their disorder. I for one fight my BPD tendencies and try hard to recover. This doesn’t mean I’m there already – I am not, and there are still characteristics of mine that are pretty undesirable. Then again, everyone has more or less undesirable traits, and it is only when these traits cause a person to either suffer significantly or become a danger to themselves or others, that we call it a personality disorder.

Let’s also consider the fact that most people with mental illness, including personality disorders, suffer at least as much from their illnesses as those around them do. The cluster of disorders to whcih BPD belongs in DSM-IV, is characterized by the patients being a pain in the ass. Psychopathy and narcissism are in the same cluster, but then again even people with these conditions may want to heal and try to hurt their relatives as little as possible.

It’s true, most mental illnesses include odd or annoying behaviors, or they wouldn’t be recognized as mentally illnesses. I for one get extremely annoyed by most people with psychotic disorders. Then again, does this mean that psychotic disorders make someone annoying? No. It’s the annoying behavior that is inappropriate, and people without mental illness may well exhibit the same behavior, only it isn’t seen as part of a mental illness. I remember a few years back the Institute for the Study of the Neurologically typical proposing criteria for normal personality disorder, neurotypical disorder, etc. as a humorous rebuttal of the idea that those without mental illness are saved from being a pain in the ass. Check them out and have a good laugh and, if you’re normal or neurotypical, realize the truth in some of this.

God, Suffering, and Post-Traumatic Growth

Some people believe that God grants Christians a carefree life, and that if God doesn’t grant us this, we must be weak of faith and/or God must be angry. We hold God responsible for all our suffering. This is kind of weird, since we do not do so for our happiness – we may thank God, but we still reecognize the part we ourselves and other people have had in it.

Also, it is common for some Christians to assume that God only allows suffering for the weak of faith. In other words, it must be our own fault of we suffer. This again is discounting the role humanity and circumstances have in people’s suffering. Then, of course, we may be angry with God and lose our faith. After all, if He eexists, why does He allow humans and nature to cause people suffeirng?

I want to talk here about growing from suffering. There is such a thing in psychology as post-traumatic growth, and I believe it is important that we recognize this in order to accept our suffering. Beyond being angry because we suffer – which of course is a stage of grief too -, can we try to use our tribulations as an opportunity to learn? For example, many people who have suffered a lot, learn to appreciate the little things in life. I am not saying that we need to be thankful that we endured whatever we endured, but we can use it as a springboard to growth. Let’s move beyond blaming ourselves or God and onto accepting whatever life throws at us and appreciating it as much as possible. Non-Christians can perhaps more easily acknowledge that God is not to blame for our suffering – simply because they may not believe in God -, but then again believers may find themselves spiritually growing from our experiences. I became a believer when I was in pretty dire circumstances, and I am not the only one.

BPD Day

Today, my husband and I attended an evvent for sufferers of and family of people with borderline personality disorder. First, a psychiatrist spoke about what BPD is. He was interrupted mid-sentence by three women who had BPD themselves and felt they were in a better position to tell what it is. This looked a bit foolish as it was obviously planned. After the women were finished, the psychiatrist took over and explained about causes and treatment. One important point is that there is no one cause of BPD. In fact, BPD is caused by many factors interacting, such as environment, traumatic experiences, genetics, neurobiology, etc. Another interesting point was that there are four different therapies for BPD which are on average each equally effective. Also, the therapeutic alliance is more importan than what type of therapy you’re following. He said that therapeutic skills are important in all psychotherapy practice, but to an exaggerated extent so in BPD treatment.

Then we went to meet some peer supporters who told their stories and had us ask questions. I had expected to sit and listen but ultiately was the most talkative on my table. One of the peer supporters said she suspected she was born borderline. I have discussed this topic before. Some personality traits, such as aggressivness or risk-taking, make someone more prone to end up in traumatizing situations. Also, people with certain traits experience more seemingly minor evetns as traumatic. For example, my husband later told me he had experienced the same event that one of the peer supporters said was traumatic to her, and he was unaffected. This is one reason I don’t like the narrow DSM-5 definition of trauma in PTSD. PTSD too is as much a brain-based and genetic condition as it is trauma-based. So are the dissociative disorders by the way. I hope eventually the DSM developing people will realize this and remove the mandatory connection of PTSD to specific traumas. Science is already there on the dissociative disorders, but sufferers need to follow. Note please that I am not saying that abuse or trauma has no role in these conditions, or that it isn’t horrible when it occurs. All I’m saying is that it’s not like you’ll only and always develop PTSD or a dissociative disorder if you’ve experienced a certain trauma.

Schools, Know Your Place

Yesterday, Jill Raffiani posted an interesting blog post on education system involvement in parenting. The reason for her post was her having seen a video of police arresting a father for picking up his kids from school (apparently, they were picked up early or something). I have not seen the video so can only go with what Jill says about it.

In the Netherlands, we have mandatory attendance legislation, so homeschooling or taking days off school is not allowed. Then again, even in this situation, when a kid is missing school often, the local government education officer gets involved, not the police. I understand that sometimes harsh measures need to be taken to get kids to school, and it’s not like the school has no role in this at least here in the Netherlands. Then again, assuming this Dad didn’t constantly take his kids out of school, it’s outrageous to have him arrested. Again, I don’t know the situation beyond what Jill had to say about it.

Jill continues to discuss school involvement in more minor parenting decisions, such as what the child gets for lunch. I responded by detailing a situation that happened when I was at the school for the blind in seventh grade. Kids even in high school had to eat lunh under close supervision, and there were relatively strict rules about what you could bring and how you were supposed to eat your lunch. Besides, school hired another organization for lunch supervision, and my parents didn’t want me to become a formal client there. I was taken out of lunch group and had to eat in the classroom by myself. Then, the lunch staff told a lot of my fellow students to stop hanging out with me because I presumably was having a bad influence on them. Now this is so totally outrageous. Firstly, schools have no business dictating parental decisions on such minor details as what to eat for lunch, how to eat it and where to eat it. Secondly, it wasn’t me who had made the decision to stop going to lunch group. I was in fact expelled from lunch group because my parents didn’t want to have this external organization, with its undoubtedly large number of psychologists and other nosey folk, to document on me. My parents didn’t say I couldn’t eat with the other kids, although they didn’t like lunch group for secondary schoolers, but I couldn’t attend because my parents refused to have me become a formal client there. Fair enough, but what happened next, ie. the lunch staff telling kids not to hang out wiht me, is, let’s just say, rather childish.

Unless a child is clearly being abused – and getting the wrong school lunch is not abuse -, schools have no business interfering in parenting. Schools are there to educate kids, and in cases of special education, where perhaps life skills may be addressed, the parents still need to sign the IEP. I do not feel that parents hire the teachers in a way, like Jill says, simply because this is not the case in the Netherlands, except for daycare, which Jill was indeed talking about. I also have a problem with the phrase that teachers need to work on parents’ terms, but maybe that is a case of semantics. Parents and teachers each have their roles, and they need to mutually respect each other. Schools are naturally in a position of power, and they have no right to abuse that position to force parents to parent their children a certain way.

Empty

I’ve been feeling kind of empty lately. It’s as though, since my diagnosis was changed from a dissociative disorder to BPD, my alters (if they existed) have gone into hiding, and I’m not sure what’s left of me. I’ve been feeling a bit depressed for about two months, and, while I am currently experiencing a few days of more (hyper)activity, my mood is not better. I also feel a deep s adness within me, but I cannot reach it except by going through anger first. This is not unusual fo rme, but often I can at least feel that I’m sad, while now, I merely know. We were talking in therapy yesterday about the needs a growing child needs to have met, and I was talking about what I felt I’d lacked in some of these areas, without really feeling much of anything. Ultimately we ended up talking about social skills. That topic may need addressing too, but really, I felt like I couldn’t access or process my feelings.