Acceptance and Autism #AtoZchallenge

Today, for my first post for the A to Z challenge, I want to focus on a fundamental aspect of parenting an autistic (or non-autistic) child and of being a person: acceptance.

Many pro-cure autism parents don’t like the word “acceptance” when used in the same sentence as “autism”. They think that to accept their child’s autism means to like it, or to see it as something that can’t possibly be negative.

In truth, accepting means simply acknowledging what is. I remember I was discussing acceptance with a former therapist and saying I wasn’t ready toa ccept something. At that point she said that I might not be ready to accept the current weather but it’s still stormy whether I accept it or not. It is in the same mindset that I would like to encourage parents and autistic people to accept themselves or their autistic child.

Most parents, even those who would like to take away their child’s autism, accept their child for who they are. In other words, they acknowledge that their child is autistic now. Some obviously don’t, as some parents are in denial and others view autism as something completely separate from their child, but most do. Acceptance does not mean not wanting to change anything. In fact, in dialectical behavior therapy, a common treatment approach for people with borderline prsonality disorder, you are taught that to change something, you have to accept it first.

Let’s face it: your child is autistic. That’s the reality you have to acknowledge as a parent if you even want to begin to change anything about your child. You wouldn’t start treatment for autism, whether it’s behavioral or biomedical or medication treatment, if you didn’t accept your child is autistic.

I can illustrate this with my own life. My family till this day does not accept that I’m autistic. I wasn’t diagnosed till early adulthood for this reason. Then, when I accepted that I’m autistic, I started seeking treatment. I take medication and get counseling. This helped me greatly improve behaviorally. I would likely still have meltdowns everyday if I hadn’t accepted the fact that I’m autistic.

In short, to accept yourself as an autistic person or to accept your autistic child means to acknowledge the reality of autism. As parents, you probably love your child regardless of their autism, too, but that is different from accepting them. Accepting yourself or your autistic child does not mean liking your or their behavior. It does not mean there is nothign you wish to change about yourself or your child. After all, everyone has things they want to change about themselves and one aspect of parenthood is to help your child change.

#HighFunctioningMeans I Can Hold It Together Until Finally I Can’t

I had been doing quite well mental health-wise for a few weeks. I was in fact doing so well that I was beginning to doubt anything is wrong with me. Maybe I don’t have autism and borderline personality disorder after all.

Then on Thursday, I started feeling a bit cranky. I thought I was coming down with the flu again, as many people seem to get it a second time around. The self-doubts also became worse. Maybe I am too “high-functioning” to be in an institution, like so many parents of “low-functioning” autistic children used to say when I still had stronger opinions on autism than I do now. Maybe I fake the whole of my mental illness and developmental disability.

Then on Friday night all came crashing down. I had this huge autistic, borderline meltdown. I ran off the ward with just socks on my feet not realizing it was too cold and rainy for not wearing shoes. I was actually very confused. When a few people came by, I called out for help, but they went on chatting and, I thought, filming me. I have never been truly psychotic, but psychotic-like symptoms are common with both some forms of autism and borderline personality disorder.

Long story short, after melting down more on the ward once the staff found me, I spent the night in seclusion. I don’t advocate forced seclusion on anyone who isn’t physically harming anyone, and I wasn’t at the time, but I was confused enough that I could physically harm myself. I went into seclusion voluntarily.

About a week ago, some autistic bloggers launched a hashtag on Twitter: #HighFunctioningMeans. They meant to raise awareness of what it is like to be (seen as) high-functioning but still be autistic. I would like to contribute to this hashtag with this post.

I don’t have meltdowns everyday. Not anymore since going on a high dose of an antipsychotic. Before I went on medication, a day without meltdowns was indeed a rarity. Though I don’t become physically aggressive towards other people anymore, I have broken a huge amount of objects and become self-injurious. I in fact have done all the things parents of “low-functioning” autistics say their child does while in a meltdown, including as a teen becoming physically aggressive towards people. Now that I’m an adult, I still hand-bite, head-bang, throw objects, run into the streets, etc.

I am not proud of these behaviors. I wouldn’t medicate myself with heavy duty medications if I were. I do advocate finding better treatments for autistic irritability. The reason I write this, however, is to demonstrate that those who appear to be “high-functioning” on the Internet, or even those who appear “high-functioning” when you first meet them, can be severely disturbed when eventually they can’t hold it together anymore.

A-Z of Autism: Announcement and Background

April is autism awareness month in the United States, and there’s some autism awareness week in the Netherlands soometime in early April too. April is also the month for the blogging from A to Z challenge. This means bloggers write a blog post on every day of the month except Sundays, choosing themes from the letters of the alphabet.

I signed up for this challenge a week ago. Originally, I was thinking of a wholly different theme for this challenge. Over the week, however, I started becoming more and more involved with the autism/autistic community. I thought maybe I’d do autism as a theme next year, but then I thought: why not this year? I may not be blogging anymore come next year. Also, if there’s one thing I know a lot about and have strong opinions on, it’s autism.

I am still thinking of some themes for some of the letters, and I might cheat here and there and discuss some related conditions too.

For those visiting from the A-Z theme showcase and who haven’t looked around, here’s a bit of background on my experience with autism. In short, I was diagnosed with an autism spectrum disorder in 2007 at the age of twenty. Some professionals say I have Asperger’s, while others prefer to leave it at generic ASD. What this means is that I’m of above-average intelligence and can speak, but otherwise have most of the usual autism symptoms.

As I said, I have strong opinions on autism. I however will attempt to look at the issues at stake from different sides. As I said, I may also discuss related conditions. I, after all, self-identify with a few other neurodevelopmental conditions too.

I will attempt to keep my posts as accessible to the general public as possible. If you find that you don’t understand something or you have questions, feel free to ask in the comments. I also encourage debate, but personal attacks will not be tolerated.

Four Things I Wish Parents Knew About Neurodevelopmental Disorders

A few days ago, Natasha Tracy of Bipolar Burble wrote an interesting list of things she wishes parents knew about mental illness. I am going to use this list as inspiration and write a list of things I wish parents knew about neurodevelopmental disorders.

1. Neurodevelopmental differences exist. Whether they are disorders, is a societal controversy that you as a family cannot solve. If your child exhibits behaviors that get them in trouble, you may view them as just part of their individuality. That is great! However, please note that your child’s neurology will not change by the way you view it. If your child gets stuck, that’s a sign that they need help whether you like to admit it or not.

2. Neurodevelopmental disorders are not your fault. Your child’s neurology is not something you caused by anything you did or didn’t do (unless you as the mother drank or used drugs during pregnancy). Whether your child’s neurology leads them to get in trouble at home or at school, is related to the interaction between their neurology and the home or school enviornment. You (and the school) can make positive changes there.

Most adults feel their parents did things during their upbringing they would’ve liked to be done differently. However, you probably do the best you can. If you start feeling powerlessness and exhibiting behavior you regret, it is time to seek support.

3. Seeking help is not a weakness. It is in admitting our limitations that we show our strength, in this sense. If your child is unmanageable, it is better to seek help than to treat them harshly or to indulge into their every wish. You are not a bad parent for needing help with your child. Again, the child’s behavior is a result of an interaction between their neurology and the environment. Especially if your child is having trouble in school too, this is a sign that it’s more their neurology.

4. A diagnosis is a label, not a verdict. Your child with an atypical neurology might need a diagnosis because of the need for services. This does not change who they are as an individual. Neurodevelopmental disorders affect children and adults of all intellectual levels and personality types, and there are so many different aspects to neurodiversity that no two children with the same diagnosis are alike.

Because of the way the school system worked when I grew up, a diagnosis for me would’ve been a verdict in a way. I hope this has changed now.

Mums' Days

Cinderella with a Dozen Shoes

This week’s prompt from Mumturnedmom is “Cinderella”. Many people, especially housekeepers and parents, feel like a Cinderella at some time because of having to do all the work. However, I want to focus on another theme from the fairytale for my post: belonging.

Cinderella is a stepchild. She doesn’t fit in with her evil stpmom and stepsisters. Then, when she is turned into a wonderfully-looking princess and goes to the party wearing princess shoes, she finds the prince she does end up fitting in with. Note that, at first, Cinderella has to put on a mask to be accepted by the prince, but once he knows she is the one fitting the shoe she dropped, he accepts her as she is.

How does this relate to my life? Well, in many ways, I don’t fit in. I wrote about my minority statuses on Tuesday and, though I don’t want to overemphasize their impact, I can be sure they make me stand out from the crowd.

I also sometimes have to put on a mask to be able to fit in somewhere. When, however, it’s midnight and I drop one of my shoes on my way out of the ballroom, someone will ultimately find me with the missing shoe. i will ultimately fit in somewhere. For example, I fit in with the autistic community. I have to show a particular aspect of myself, the autistic part, to be accepted at first, but ultimately the autistic community accepts me as I am.

I however don’t just wear one pair of shoes – I wear a dozen. For each community I fit in with, I wear a different pair of shoes. Each fit me, but each are not my whole shoe collection.

Sometimes, I end up meeting someone who discovers I fit more than just one shoe they found. These are people who sometimes have more than one distinctive characteristic in common with me. For example, a few months ago I met someone I’d known from the blindness rehabilitation center again through Facebook. We discovered that not only do we have blindness and premature birth in common, but autism as well.

Other people will find the shoes I dropped and, though they don’t fit them themselves, will like me for fitting these shoes. These are people who, though they may not belong to my tribe in many ways, accept me as I am. This is similar to how the prince accepts Cinderella, who is clearly not glamorous, because she fits the shoe.

mumturnedmom

Defining Myself

One of the March writing prompts on the SITS Girls site is “what defines you?”. I could write an essay on this, and in fact, in 2002, I did this in response to the “defining yourself” prompt on a disability website I visited at the time. I wrote an essay on the ways in which I was different from most other people: being blind, being in the intellectually gifted range and (I thought at the time) being a lesbian.

I no longer identify as a lesbian obviously, but the other minority statuses still apply to me, and so do many more. I am autistic, mentally ill, unemployed, etc.

Do these minority statusus truly define me? I don’t think so. Rather, I think I am defined by the core of my personality. Having a poor self-image makes it hard to define myself as such, but I will try.

1. I am intelligent. I don’t like my intelligence in a way. I embrace my giftedness as a minority status, although to be honest I don’t think I’d like to be part of elitist high IQ societies. I am part of a few Facebook groups that define giftedness as asynchronous development and often also link it to high sensitivity. These groups do not see giftedness as all positive, like the high IQ societies do. They rather see it as a distinctive but value neutral characteristic.

As a more abstract quality, I however don’t embrace my intelligence. It is so often used to define the core of my abilities, as if I can’t be impaired with such a high IQ. I realize that intelligence is what allows me to write relatively coherent blog posts, for example, but if it’s connected to social skills or practical independence, that’s just not okay.

2. I am stubborn. Sometimes, people say I am a go-getter. Other people say I give up way too easily. It all depends on the situation. In a way, my stubbornness can be seen as rigidity: if I’ve got something on my mind, it’s got to go this way. I just today remembered pushing my father to vote for a particular political party when I was too young to vote (around sixteen). I don’t remember the details and am not 100% sure he ended up voting for that party, but I do remember being quite adamant that at least one of my parents was going to vote for my party.

3. I am sensitive. I want to firmly distinguish this from being empathetic, as in knowing how to react to people’s emotions. However, I do sense and absorb people’s emotions very easily. This sometimes leads to overload. I am also, of course, sensorially reactive, wich can also lead to overload.

4. I am socially awkward. Back in like 2003, I used to own an E-mail group (one of the many inactive E-mail groups I’ve owned) called something like Socially_Awkward. This was how I defined myself in the midst of suspecting I had autism but also being aware that others saw autism as an inherently negative thing that an intelligent person like me shouldn’t associate with. The fact remains that I’m socially awkward. I can converse semi-normally when the situation is familiar, but I often have to be taught explicitly how to handle unfamiliar social situations.

These are but four of my characteristics. I undoubtedly have many more, but it is hard for me to think of them. There are also many other ways in which I could define myself. As I said, I could go with my minority statuses. People could also define themselves by their jobs or roles. In this case, I’d be defined as for example a wife and a blogger. Then there are probably many more ways to categorize and thereby define people. I am curious to know how you define yourself and what categorizations you use to define others.

Rest #WotW

Last week, I was going to choose “sick” or “flu” as my word of the week. I was, after all, sick with the flu. To be honest, I’ve never been this ill as far as I remember. It doesn’t say much, as I hardly ever get ill, but really, this was bad. I “only” ran a fever for four days, but the shortness of breath and exhaustion were a lot worse than the fever. Actually, when I ran a low-grade fever, I felt worse than when I ran a higher fever.

The fever went away last week Friday, but it took me the whole week-end plus Monday and Tuesday before I had enough energy to spend considerable time on the computer. I wrote a few short blog posts for my Dutch blog, but didn’t have much energy for a real post.

This week, my word for the week is “rest”, because that is what I’ve been doing most of the week. I did try to keep some sembleance of a circadian rythm, though today I slept in till 11:30 AM.

I am still a little hoarse and coughy, but the exhaustion seems to have gone back to pre-flu levels. That means it’s still there to an extent.

I found out last week that I had deficiencies in iron, vitamin B12 and vitamin D. I’m now taking iron tablets, getting vitamin D drops once a week and a shot of vitamin B12 twice a week. I hope that this will help me feel less fatigued. Today is the first day in several weeks that I’m not going to bed right after getting my night meds. Then again, I hope to get enough rest tonight anyway.

The Reading Residence

Memorable Date

My husband was my first partner. I never dated before meeting him. Our first date, of course, was the most memorable, though not for the reason you might think.

We met on September 19, 2007 at 3:00 PM at the bus stop near the dentistry department of my city’s university hospital. This was the only bus stop near the university that the bus that drove by my neighborhood did stop at. Since my now husband had decided to meet at the univeristy, this was the easiest.

I arrived at 2:55. He was already there. We walked to the coffee bar in one of the universisty buildings. I ordered a coffee and he ordered tea. As we walked outside, I tripped over a step and spilled my coffee. I panicked and almost went into meltdown.

After I drank the remaining coffee, we sat on a nearby bench. We talked music. If you know me, you know that I have zero knowledge of and hardly any interest in music. I mumbled that I liked world music. My now husband had no clue what it was. When, much later, I played him a CD with Latino music I liked, he joked that if he’d known that this was world music, he might never have asked me on a second date.

He obviously did ask me on that second date. Later, he told me that he’d felt uncomfortable about our first date, but had envisioned us meeting many more times if he asked me on a second date. He was totally right. Here we are 7 1/2 years later, married for 3 1/2 years. We got married on September 19, 2011 at 3:00 PM, so exactly four years after we first met.

Mama’s Losin’ It

Positives for the Week Starting February 23, 2015 #HappyDaysLinky

This week has been challenging. I’ve been very fatigued. This is nothing new as I’ve had terrible fatigue for a few months already. I also had a dizzy spell on Monday. Since my blood pressure was fine, there hasn’t been an obvious cause. I’m due to get blood drawn to check for hemoglobin and vitamin levels to see if either could explain the fatigue today.

On the old version of my Dutch blog, I used to post happy moments every now and then. Many other Dutch bloggers do this to focus on everyday enjoyment. I just found out that there’s a linky for this in English too. It’s the #HappyDaysLinky. So let me list some things that were good about this week.

1. Getting my braille display back. I got it back on Tuesday and was so relieved. I honestly hadn’t expected it back till later this week at the earliest. Since I hadn’t received a call from Freedom Scientific, the copany that manufactures them, I was expecting it to take much longer. I’m so glad the thing came back, so that I am now fully able to enjoy my online life again.

2. WiFi at the ward. Another thing that will enable me to enjoy my online life more, is that we got a WiFi connection at the psych unit I reside on. It won’t reach my room as the emitter is at the opposite end of the building, but I’ve been able to take my computer to the front room to enjoy the best signal. I don’t think I’ll be using the connection often except to download digital talking books, but it’s a good thing that it’s there.

3. Chocolate! I bought myself a box of chocolates on Monday and truly enjoyed them. Unfortunately, I ate a little too many and got sick, but that went away quickly.

4. Going for walks. The flu has stricken many of the nurses, so there’s usually fewer staff on my unit. That being said, I have been able to enjoy a few walks with the staff. I had a long walk with a substitute staff member on Sunday. Normaly staff can’t take patients on walks on week-ends because there is even fewer staffing, but apparently it was quiet enough on the ward that one could leave. Yesterday, I had to squeeze in art therapy between breakfast and going to the doctor for the fatigue. It was originally frustrating to have the art therapist arrive late, but I made up my mind that this was a great opportunity to go on a walk instead of doing actual art therapy. After all, by the time we’d reached the art therapy building, it’d almost be time to return to the unit for leaving for the doctor’s. I had a nice walk.

I am hoping next week will see at least as many happy moments. I heard the activity staff are introducing movement-focused activities in the day activity room across from my unit. I am looking forward to participating.

My goal for next week is to spend more me time. I hope to focus on writing and hope to also start yoga again. If not at day activities, then I hope to do it in my room.

What Katy Said

28 Before 28

It’s been a while since I wrote on this blog. I started up a Dutch blog again, and this time I hope that neither this blog nor the Dutch one suffers from my having two blogs. The reason I didn’t post for a while has nothing to do with the Dutch blog though. It’s to do with the fact that my braille display needed repairing and they took it into the shops for repairs rather than trying to fix the thing while I waited. This originally meant, or so I thought, that I couldn’t use the computer at all. Thankfully, I figured out the text-to-speech functionality and could do some Facebooking and blogging in Dutch. The synthesizer doesn’t do English though, so blogging here was out.

Even though I had over a week without blogging, I didn’t get lots of inspiration, because I couldn’t read the mostly English-language posts I usually get my inspiration from. I am determined to write though, so I’m going with Ginny Marie’s spin cycle prompt. The prompt is “28 things”. I originally thought about taking the easy way out and writing 28 random facts about myself, but then I realized I am 28 right now. Therefore, I choose to write 28 things I did before turning 28. Not all of these are truly achievements I made, but oh well.


  1. Went to three different elementary schools and two secondary schools. Graduated high school in 2005.

  2. Learned three foreign languages (English, German and French) and Latin. Forgot all but English and a tiny bit of German.

  3. Taught myself calendar calculation.

  4. Went to a school prom. Once or maybe even twice.

  5. Had crushes on only three different people. All of them were unapproachable. I don’t know whether I could even call what I feel for my husband a crush.

  6. Went to college and university. I attended college for a year and university for all of two months.

  7. Took five college courses in psychology. Passed two, failed one and never took the test for two.

  8. Lived on my own. For three months, but I did it!

  9. Got married.

  10. Lived in four different cities/towns, three of which are in the province of Gelderland.

  11. Rented an apartment with my husband.

  12. Got two cats.

  13. Traveled to France, Germany, England, Switzerland, Italy and Russia.

  14. Had eight major surgeries, seven of which I had before the age of nine. The eighth was my eye surgery in 2013.

  15. Got my wisdom teeth and had them out.

  16. Was diagnosed with Asperger’s Syndrome, borderline personality disorder and a host of other psychiatric conditons that I got dediagnosed with again.

  17. Was on at least a dozen different medications, ten of which were psychiatric medications.

  18. Had at least a dozen online journals and blogs.

  19. Was the owner for four or five Yahoo! E-mail groups and one Facebook group. None of them are currently active. Created another (also inactive) Facebook group and became a co-admin for a Yahoo! group and a Facebook group that are both active at age 28.

  20. Wrote a resume. Once. Because it was a college requirement.

  21. Spoke to two members of parliament in person. One came to my high school and the other came to the blindness rehabiliation center. Both were from the Christian party.

  22. Was a member of the Socialist Party.

  23. Voted for them only once and voted for two other parties, both on the left of the political spectrum.

  24. Participated in two debating contests representing my high school.

  25. Was a member of a children’s choir even though I cannot sing to save my life.

  26. Owned the DSM-5, the current edition of the psychiatric manual, even though it’s not in use in the Netherlands yet. Read most of it.

  27. Had twelve computers, three braille displays (and got my fourth one just after my 28th birthday) and four mobile phones. All of my computers were laptops and none of my cellphones were smartphones.

  28. Attempted to write my autobiography at least half a dozen times.