Tag Archives: High-Functioning Autism

In Between: Walking the Disability Line

This week, the prompt from mumturnedmom is “in between”. I immediately thought of my life as a disabled person. For many years, I’ve thought of it metaphorically as me walking a line between being good enough to be included in the non-disabled world and bad enough to deserve care.

I am multiply-disabled. I reside in an institution with 24-hour care. I am not even in the lowest care category for institutionalized people now that we’ve faced massive budget cuts and the lower care categories got deinstitutionalized.

Yet I am intellectually capable. I am stable enough not to need to be on a locked unit, and in fact am going to leave the institution in a few months. I will then fall in a lower care category, be entitled to less care. Yet I will be able to live a more normal life with my husband.

People often automatically assume that, if you have certain abilities, you are automatically less disabled than if you don’t have these abilities. For instance, I am always seen as “high-functioning” autistic because of my IQ. This is despite the fact that I’m in a similar care category to someone with an intellectual disability who has fewer behavioral challenges, sensory issues, or is more capable in daily living tasks than me.

People also often automatically assume that deinstitutionalization is appropriate only for those with few care needs, those who are “high-functioning” if you will. People don’t take into account that institutional life requires consumers to live in a group setting, which may not be possible for some.

I struggle with this view of disability as a continuum at best and a dichotomy at worst. It makes me walk the line between “high-functioning” and “low-functioning”, when in truth, I’m neither and I’m both and I’m in between.

I am “high-functioning” because of my IQ and my language skills. I am “low-functioning” because of my poor daily living skills. In most ways, however, I’m neither and I’m both and I’m in between depending on circumstances both within myself and in the environment. Yet I’m forced to choose.

And I refuse to choose. I want to be accepted as a human being with her own set of capabilities and difficulties. I refuse to choose between being “high-functioning” and being “low-functioning”, between being dependent and independent. After all, I am interdependent, like veryone else.

mumturnedmom

High-Functioning vs. Low-Functioning Autism: It Isn’t a Dichotomy #AtoZChallenge

Welcome to day eight in the A to Z Challenge on autism. Today, I want to focus on a controversy within the autism/autistic communities: the high-functioning/low-functioning dichotomy. It isn’t a dichotomy at all, but many people feel it is. Let me explain.

A number of more capalbe autistic people do not want to be associated with “low-functioning” autistic people. Conversely, many parents of less capable autistic children do not feel their child has anything in common with “high-functioning” autistics. My point in this post is not that there are no differences between people on the autism spectrum. In fact, there’s a saying going round that if you’ve met oen autistic person, you’ve met one autistic person. It is also true that some autistic people are, overall, more capable than others. My point with this post is that there is no hard line to cross between high-functioning and low-functioning autism.

I already described some common assumptions about the HFA/LFA distinction in August of 2013. These assumptions are mostly false, because they are based on the dichotmous view of functioning levels. For example, a person doesn’t suddenly drop off a cliff in functioning when their measured IQ score is below a certain point. Again, a person with an IQ of 50 obviously does funciton at a lower level than a person with an IQ above 100, although with autism affecting much more than just cognitive ability, this isn’t even necessarily that simple.

After all, in autism, much more than cognitive ability is affected, and a person who has a high measured IQ might have severe behavior problems because they do not understand social situations, have sensory processing issues, etc. For example, I have a measured IQ of roughly 150, but I still need intensive support.

There are, of course, people who fall on the less capable end of the spectrum in almost all areas of functioning. They have a low measured IQ, are non-verbal, have severe behavior problems like aggression, etc. Some others are at the more capable end of the spectrum in most areas. These people – most of whom have an Asperger’s diagnosis -, appear just quirky and odd in social situations, but do not have many other problems. I do not say there is no difference between these people. What I mean to say is there is no cut-off point or clear-cut ability that all “low-functioning” autistic people can’t perform and all “high-functioning” autistics can.

#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.

Beyond Autism Acceptance

We often hear about autism acceptance, and I am all for it. Autism acceptance means accepting the autistic person in your life, whether it be yourself, your child, spouse or whoever, including their autistic differences. Autism acceptance does not mean not wanting to change anything about yourself or the autistic perosn in your life. After all, we all want to change and move towards teaching our full potential, and I remember from I believe it’s Eriksonian psychology that only a small percentage of people truly reach their full potential at the end of their lives.

Unfortunately, many parents of “low-functioning” autistic children say that they cannot accept their child’s autism because it’s rendering them incapable. I understand their point of view, but I do not see why there is nothing about their child’s autism that they can accept. As Suzanne over at Rarer in Girls says, she sometimes actually delights in her daughter’s autistic behaviors even though Janey is labeled “low-functioning”. At the same time, Suzanne wants Janey to learn functional communication and to become toilet trained. I totally see why.

I myself do my best to change certain aspects of my autism. For example, I watn to become less irritable and less easily overloaded. This is not because I don’t accept myself, or because I feel autism is bad. It is because I feel I could have a better quality of life if I learned strategies to regulate my sensory sensitivity and emotions.

I honestly believe that no person, autistic or not, has nothing they want to change about themselves, and for parents of all children, I don’t believe there’s nothing they want to change about their child. For this reason, I dislike the dichotomous perspective on which autistics need to be “fixed”. As Suzanne says, her child is “low-functioning”, but there are still aspects of her autism that she cherishes. In this respect, let’s move from which autistics need to be fixed on to which symptoms of autism need to be treated so that people can have a good quality of life.

There are other reasons I dislike the autism dichotomy. I am not allowed to complain about any of my difficulties, because I am more capalbe than some autistic children ever will be. These same parents are advocating for fulltime support for their children once they become adults, but I, being more capalbe in only a few areas, should deal without support. It’s that simple in the Netherlands. If you don’t require institutional support (which I do require, but people not working with me don’t get this), you fall under the local government in terms of funding for support, and care is no longer a right (which it is if you need institutional care).

Nothing in autism is dichotomous. It isn’t like, if a person crosses a certain, arbitrary line between “low-functioning” and “high-functioning”, they suddenly become completely acceptable and not in need of any treatment or become completely unacceptable and in need of a cure. There are people who can speak and write coherently who feel they’d want all their autistic symptoms to be cured. There are also (parents of) people who don’t have functional communication who don’t wish (their child) to be cured. That doesn’t mean these parents don’t want their child to learn. All parents want their child to learn and grow. As I said in my first paragraph, even neurotypicals often want to change. Change is inherent in a person’s process of aging, but that doesn’t mean that a person at any stage of their life isn’t acceptable.

The Realities of an Asperger’s Diagnosis

A few weeks ago, I read an article in a women’s magazine about autism. It started out by explaining that autism is a spectrum and then went on to say that Asperger’s Syndrome is the mildest form of autism. Someone sent in a response saying that Asperger’s can be severely disabling too and, because it is often misunderstood, may be more severe in some ways than classic autism.

I have an Asperger’s diagnosis. I also have a high IQ. I can attest to the common misconcetpions surrounding an Asperger’s diagnosis. For one thing, the ability to speak does not necessarily mean that someone can communicate effectively. Even if speech on the surface makes sense, that doesn’t mean the Aspie’s words come out of their mouth as they were intended. However, because we have normal to above-normal intelligence, we’re assumed to “know better” and our miscommunicatin is understood to be willful misbehavior.

Speaking of behavior, it is a common misconception that Aspies don’t have as severe or as frequent aggressive or self-harming outbursts as those with classic or “low-functioning” autism do. H.L. Doherty, a father of a child with classic autism and an intellectual disability, often makes this mistake. He does so again when he talks about shards of severe autism reality. In this post, Doherty describes the consequencces of his son’s self-injurious meltdowns, and accuses autistic advocates of ignoring this reality. He connotes that those with “high-functioning” autism, ie those who can disagree with Doherty on the Internet, do not have these experiences. I, for one, do.

When I still lived in independence training, I had meltdowns almost everyday. An experience like the one Doherty describes is quite familiar to me and occurred regularly until I went on medication in 2010. My last episode of severe self-injury was two months ago, and it was so scary that I went into seclusion for a night.

Now I for one agree with Doherty on some controversies. I disagree on others. My agreeing or disagreeing and how eloquently I can put this into writing, does not change anything about my functioning level in any other area than written communication about a specific topic. I am too ashamed to write about some of my Aspie realities. The details of my severe self-care difficulties, for example. I know that Doherty and his supporters would not believe me anyway. After all, I’m so intelligent. Yes, I am. Relative intelligence is required for an Asperger’s diagnosis. That does not cause any of my difficulties to go away.

Growing Up with Undiagnosed Asperger’s Syndrome

The Spectrum Bloggers Network is a network of bloggers with learning disabilities, autism spectrum disorders, etc. The founder uses the abbreviation SpLD, which stands for specific learning difficulty, though I would use neurodevelopmental disisability. I’ve been a member of this blog network for about a month, and this is my first time participating in topic Tuesday, which was posted a bit late on Wednesday. The topic is “children”. What this means is a bit vague, andd it can be interpreted in several ways.


  • What does it mean to be a child with a neurodevelopmental disability?

  • What advice would you give to parents of children with a neurodevelopmental disability?

  • Having or wanting children as a person with a neurodevelopmental disability.


I could write on all of these topics, but am going to focus on the first.

I grew up in the 1990s. This means that, while autism, including Asperger’s, was known to the psychiatric community, the general public wasn’t nearly as aware of it as it is now. My parents knew some about autism, as they later told my diagnostician that they’d suspected it in me from an early age on. Then again, the idea that autism affected those with an intellectual disability only, was still pretty prevalent especially when I was a young child in the late 1980s and early 1990s. Asperger’s wasn’t added to the DSM as a specific condition till 1994, after all.

My parents recognized my intelligence very early on too, and they wanted to challenge me as much as possible. I cherish early memories of learning difficult math concepts like squareroots and calendar calculation. Unlike what is thought about intellectually disabled calendar calculation savants, I understood the underlying concetps. Nonetheless, calendar calculation was definitely a perseveration of mine.

I was largely unaware of my social and behavioral difficulties. I did realize I spent many hours in my room as a punishment, but didn’t know why. I also knew that I had few friends. That is, when I still went to the school for the partially sighted for first, second and third grade, I had some friends, mostly older girls. They mostly admired my advanced academic abilities and other than that liked to baby me. In regular Kindergarten, I had one friend. Other children didn’t really bully me yet, but they obviously didn’t accept me.

My parents claim that the real problems didn’t start until I was around nine. When I moved to a new school for the blind in 1995 and moved to a new city the next year, I started noticing that I had few to no friends. Looking back, I realize that I approached potential friends in a hugely childish way. One of my classmates used to ask her frieend for candy, saying: “Got something to chew on?” in a certain tone of voice. I don’t think I realized these girls were friends for other reasons than candy, and I often imitated the one girl asking the other for candy myself. In fourth grade, I had only one friend, a third-grader who remained my friend till I left elementary school, but I wasn’t really excluded or bullied. In fifth and sixth grade, I was. In the neighborhood, my only “friends” were my sister’s friends’ big sisters.

I don’t know at what age my temper outbursts became abnormal. Like, I know that, at five, I had a temper outburst over my father saying only kids under six could access a treehouse, worrying what would happen to me accessing the treehouse next year. This worry seems a bit silly to me for a five-year-old, but having a temper outburst is normal at that age, right? When I was still having these temper outbursts at ten, this became a significant problem. The fact that I still have them now that I’m nearly 28, well, you get the idea.

I was nine when my paretns were pressured by the school into sending me to play therapy. I don’t remember that play therapy was all that useful. I threw out purple miniature dolls because people aren’t purple, tried to get the water tray to overflow just to see if I could, and fought using toy swords with the therapist. After four sessions, summer vacation arrived and my parents took me out. I hated having to miss out on biology class anyway.

I didn’t have an extreme need for predictability. I was somewhat resistant to change, particcularly if plans that I’d been made aware of, were changed. This however looks like a bit of a “my way or the highway” attitude, and maybe it was. I do admit that I was particularly self-centered. I still am somewhat, having to really consciously think about taking another person’s perspective into account. This, rather than rigid routines, seems to be more why I am and was resistant to change. Please note that self-centeredness is in fact common in autistics, and it is not the same as selfishness.

I was eight when Asperger’s was added to the DSM. Then again, none of my school psychologists suggested I had it. My parents did take me to many different psychologists for second and third opinions, but this was mostly to validate that I was indeed intelligent, which the school for the blind often questioned or outright denied. The focus as far as social/emotional issues were concerned, lay on my temper outbursts. It is in this sense kind of interesting that these same outbursts weren’t looked upon as anything other than low tolerance for distress in the 1990s, but were seen as the reason for an autism assessment by 2007.

Finding Answers in Disability Limbo

A few months ago, I wrote a post about my need to belong somewhere within the disability community and my possibly intruding upon communities I don’t belong to. One such community is that for brain injury patients. As far as I was concerned, “brain injury” was always followed by “sustained after birth” or preceded by “traumatic” or “acquired”. Yet brain injury can occur at birth too. Only then it’s not called brain injury, right?

Since my autism diagnosis is being questioned again, I’m feeling an increased need to figure out what exactly is wrong with me. In part, this entails putting a name to what I have. Are my motor deficits diagnosable as dyspraxia, mild cerebral palsy, or are they not diagnosable at all? Am I autistic or not? Then again, putting a name to my disabilities is but one of my quests. As I’ve experienced, most communities are open to those with an uncertain diagnosis, so it’s not that I need to have a diagnosis to fit in with a support group.

Back when I was diagnosed with autism, I didn’t want a specific ASD diagnosis. The psychologist, who ultimately gave me an Asperger’s diagnosis anyway, said he wanted to do an assessment of my strengths and weaknesses. I don’t know whether a quick DSM-IV interview amounts to that, but to me, a lot of questions remain unanswered.

It could be my slight neuropsychology obsession, but I want to know why I have issues I do have. I want to understand, in a way, why I can’t function at the level I’m supposed to given my intelligence and verbal abilities. Is it normal to be unable to load the dishwasher but able to write a lengthy blog post? I don’t think a diagnosis, whether it’s autism or brain injury, will answer this question per se, but what will? It is most likely that I have quite bad executive dysfunction, but can this at all be validated? Should it?

It isn’t purely that I’m overanalytical and want to understand my every bit of brain function. It’s more that I’m struggling terribly with being seen as more “high-functioning” than I am in daily life. Not that I want to reinforce the stereotypes surrounding the Asperger’s diagnosis, but my mere existence won’t defeat them either, and I’m sick and tired of having to prove myself.

Why I Can’t Live Independently

I was asked the question again, on a Facebook group for parents of bliknd/autistic children (where I share my perspective as a blind/autistic adult). When people realize I’m above-average intelligent and verbal, they often ask why I can’t live independently. That is, unless they, like my therapist, assume that no blind person can. She originally had it written into my treatment plan that, if I had not been blind, I would’ve been able to live independently with outpatient support. I had this removed because it quite likely would’ve impacted my funding.

Honestly, it is quite a painful question for me. I have somewhat suppressed the memories of the time when I did live on my own, and don’t really like to think of that time. Then again, I have to if I want to clarify my support needs.

I couldn’t live on my own back in 2007, when I tried, because I had terrible meltdowns in which I’d become self-injurious and aggressive, and I wandered. I also couldn’t do daily living tasks because I needed very clear instructions and needed lots of one-on-one instruction. I lived in an independence training home prior to this and got lots of instruction there, but I got overwhelmed very easily and had meltdowns etc. then. I was more or less kicked out of the independence training home because of my meltdowns.

In addition, I have mild motor deficits. I don’t know whether this is the cause of my inability to perform simple daily living tasks like putting a topping on my bread, but I can’t do these things. My gross motor skills are better, so I can technically operate a vacuum cleaner for example, but I get overwhelmed by the noise so much that I either forget where I was vacuuming or shut down completely. Vacuuming and sweeping are not the problem, as blind people in the Netherlands generally get fudning for a housekeeper to do these tasks. Unless, that is, you have a partner who is non-disalbed, but then again my husband has to do all the cleaning now that he lives alone, too. Same for cooking, so these are not a problem.

It is really hard to put into words what went wrong when I lived on my own. Yeah, I had meltdowns and wandered, but, as an intelligent person, can’t I just control those behaviors? With medication (including a high dose of an antipsychotic), these behaviors have become less frequent, but other than that, I’ve found nothing that helped me. The meltdowns and wandering still occur regularly enough that it’d be a safety issue if I lived independently again. Besides, the fact that I have 24/7 support available should I need it now likely causes the meltdowns to be less frequent. I have learned to delay my need for assistance, but still ultimately need a good deal of assistance during the day. Besides, in cases of (perceived) emergency, I just need to be able to reach someone. And you might say my perception of emergencies is screwed, but when I’m sensorially and/or cognitively overloaded, I can’t make that judgment. Oh, did I mention I can’t get myself out of my husband’s apartment safely using the stairs, which I’ll need to in emergency cases? I could likely learn this, but I’d need a fair amount of instruction. I do know the stairs and don’t know whether I could walk them without falling if I didn’t get assistance. For those who’ve seen me walk the stairs at home fine, these are firstly different (indoor) stairs, and secondly my motor deficits have gotten slightly worse.

When I write this, I can hear the judgment of certain people, including possibly certain readers, in my mind. Some people may want to minimize my support needs because they are in denial. Others mighht want to discredit my opinions, for I am allegedly not like their child. I was going to write about all the unsafe situations I’ve been in (and not just unsafe as perceived by me) because of lack of support, but I think it’s pointless. It hurts too bad to think of these, and most likely people aren’t going to change their perception of me unless they genuinely want to, in which case the above paragraphs should suffice.

I Am Astrid’s Functioning Label

Back in 2008, Bev over at Square 8 wrote a post entitled I Am Joe’s Functioning Label. The post struck a chord with me right the first time I read it, and, over the years, it has become more relevant. For those who don’t want to hop over to read the post, it’s about what the label “high-functioning” is perceived to say about an autistic person, and how this impacts the way autistics are treated.

For clartiy’s sake: I am not saying that people with an intellectual disability have it easy. The cuts to care and the accompanying independence doctrine affect them too. What I do mean is that it is often easier to understand why a person with an intellectual disability needs care than if you have a high IQ.

It is often presumed that a person who can do a cognitively challenging task like operate a computer, can also do more basic tasks like brush their teeth. In reality, these skills have nothing to do with each other. Another assumption is that people who know how to perform a task and/or why it’s necessary, can also perform that task. I remember even years before Bev’s post reading on Autistics.org about a woman who was getting ulcers beecause social services presumed that if she knew about hygiene, she must be albe to wash herself.

There are many more assumptions about people labeled high-functioning. Here are a few that are affecting my life.


  1. Because of my functioning label, I am presumed to be safe in traffic. Since starting to learn a tiny route around the building, I am not only allowed to leave the ward alone without any purpose, but am expected to leave the ward if I’m angry.

  2. Because of my functioning label, I am presumed to be able to take care of my personal hygiene without reminders or help. This is in a way somehting I don’t want to change, because the reason I’m not able to perform some skills of personal care is because of sensory issues.

  3. Because of my functioning label, I am presumed to know how to solve problems myself even when anxious or overloaded (my fuctioning label dictates that overload is just an excuse to avoid demands). I am presumed to be able to make my needs known in very specific terms.

  4. Because of my functioning label, I am thought to be able to perform practical skills like making a bed or pouring coffee myself. Ironically, the motor deficits which cause me to be unable to perform these tass, were originally thought to be especially common in Asperger’s Syndrome.

  5. Because of my functioning label, I apparently don’t need a lot of structure. This means I am presumed to be able ot schedule activities without help.

  6. If I get overloaded, my functioning label dictates that it was my own choice and I’m depriving other people of the right to make noise.

  7. If I have a meltdown because my routine is interrupted, again, my functioning label dictates that I’m just spoiled and trying to always get my way.

  8. Because of my functioning label, I am presumed not to engage in aggressive or self-injurious behavior. If I do, it’s obviously because of BPD-related attention-seeking.


Yes, I see that a lot of these assumptions are not just based on my functioning label, but also on my co-occurring diagnosis of BPD. Before I had this diagnosis, not only was I not presumed to be unwilling to act normally, but my autism was presumed not to be as mild as it is now. Hence, an additional diagnosis makes it seem as though I’m less severely affected. Isn’t that ironic? By the way, if instead of Asperger’s and BPD, my diagnosis had been multiple complex developmental disorder (McDD), which is characterized by practically the same symptoms, I would likely have been seen as quite severely autistic.

Depression in Autistic People

When I first learned about Asperger’s Syndrome and high-functioning autism in 2002, I read an interview with Tony Attwood in a New York disability awareness newsletter. For those who don’t know, Tony Attwood is an Australian psychologist and expert on Asperger’s Syndrome. In the interview, Attwood explained that many people with Asperger’s Syndrome suffer from depression in adolescence because they are aware of their differences but cannot change their behvior on their own. While I have not personally suffered with clinical depression, I can relate to lower-grade depressive symptoms that originated for me at around age twelve when I was first becoming aware of my social differences.

Depression in autistics is often missed, because it overlaps with certain autism symptoms, such as social withdrawal, repetitive/obsessive thoughts, and black-or-white thinking. Also, some autistic people’s depression is mistaken for improvement in behavior. I remember reading in a Dutch book on autism about a young man who had had an obsessive interest that he was constantly talking about. When he stopped talking about his special interest as much, people thought he was improving. In reality, he was severely depressed.

It is often hard to treat depression in autisitcs, especially if the autism is undiagnosed. I mean, people can get their depression in remission throguh cognitive-behavioral therapy, medication or both, but their social differences will not subside. Social skills training may help, but even so, autism cannot be cured, and I’ve found social skills training that was aimed at more general populations particularly frustrating given the lack of practical instruction and the underlying idea that people with depression or other general mental health conditions do essentially possess social skills. One sort of social skills training that I’ve found some use in, is the Liberman module on social relations. Liberman modules were originally developed for people with schizophrenia. They use a lot of repetition, roleplaying etc. rather than just telling the participatns they need to listen, ask questions and reflect on the other person’s feelings. Unfortunately, the training also assumes cognitive deficits, so that for example each of the participants in my group were asked to repeat the goal of the module. I found myself being annoyed by this.

Please realize that insistance on changing socially inappropriate behavior may make an autistic person more depressed. A few days ago I wrote about my diagnostician insisting I unlearn to twirl my hair. When he said this, I was in my first month on the psychiatric ward with significant suicidal ideation. That was not the time to insist on social skills. Therefore, it is my opinion that someone who is still depressed, should not be put into a social skills program. It’s important that depressed autistics (and every autistic for that matter) learn that they are acceptable for who they are.