Tag Archives: Low-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.

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.

Murder of Autistics: Understanding, Advocacy, Excusing

As H.L. Doherty writes, a mother killed her severely autistic child and herself. This is not the first murder/suicide where autism is involved, and it sadly will not be the last case I’m afraid. Doherty goes on in his post to shame autistic advocates who doubt that severe autism was the reason for this murder/suicide. I have to agree with the autistic advocates, in part: while circumstances can drive a person to murder or suicide, it is not like autism parents somehow need extra sympathy if they’ve killed their children. All parents of disabled children, and disabled people of any age themselves need understanding and support.

Let me tell you my experience. In 2007, I was quite severely disabled by my autism. I was aggresssive and self-injurious, including smashing my head into the brick walls of my apartment and trying to jump out of a moving car. I wasn’t being taken seriously by the crisis team, who said that admission to a hospital would not be good either. On November 2, I threatend suicide in my parents’ city, and the crisis team there took me seriously and admitted me to hospital. I got slightly bettter there, but still struggled. After years of having many meltdowns, I finally found medication that helped reduce my irritability. I have a post in the works about my changing attitude towards medication, recognizing that many autistic advocates are against the type of medication I take.

By 2015, I may or may not fall under the Long-Term Care Act. If I do, I’m entitled to residential care for as long as I need it. If I don’t, I need to get support at home, which I got a lot of already when I was in this severe state in 2007. Please note that I was quite aggressive and self-injurious all my life, and that it just escalated in 2007.

Please also note that I’m not the most severely autistic person imaginable. For one thing, I don’t have an intellectual disability and am mostly verbal. I do not claim to know what it is like to have an intellectual disability or be completely non-verbal. What I do claim to know about is the despair of having to deal with complex needs in a system that is facing massive budget cuts.

That being said, of course we need more supports for people with complex needs, including those with more severe autism than mine. Of course we need to understand how hard it can be to care for a person who has these complex needs. What I ask Doherty, however, is to also understand those people who live with significant disabilities.

Please understand, Mr. Doherty and supporters, that we don’t choose to be self-injurious, aggressive or have complex care needs for other reasons. We agree with you that more support is needed. I, for one, am realistic enough to admit that some people need drugs to curb severe aggression. (I take a high dose of an antipsychotic to prevent milder irritability, but I am not going to advocate that children or adults who can’t consent are forced to take this.) I, for one, have myself been suicidal, so I know what it’s like to want to end your life because of lack of care.

Where I disagree with Doherty and his supporters, is where he connotes that auitsm is the cause of murder/suicides like this one, in a tone as if to say that, as long as severely disabled autistics exist, we’re asking to be killed, or at least that killing us is understandable. And it is not. Writing about murder as if it’s somehow provoked by the victim’s disability, is denying the disabled victim the basic human right to life. It is not the call for support we, the autistic community, are fighting against, or even the fact that people with severe autism and an intellectual disability exist. However, I ask that Doherty et al. please stop excusing murder just because it offers an opportunity to advocate. No-one should be murdered. Stop excusing it.

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.

Favoring More Capable Autistics in Autistic Literature

I’m currently reading We’ve Been Here All Along, a collection of poetry and essays by autistics over age 35. I may post more about it when I’m finished, but for now, I want to talk about the bias in the publication: all autistics whose contributions I’ve red so far, are reltively capable, eloquent, language-type Aspies. This may seem logical given that the contributions are written, but I for one know of a few non-speaking autistics who can write. They don’t make it into autistic literature as often, but they exist. The bias favoring more capable autistics also a bit annoyed me. Where are those older autistics who aren’t parents or in relationships, don’t have jobs, and don’t live independently? We aren’t all Temple Grandin, you know? This bias is common in autistic literature, but it also perpetuates the myth that less independent autistics need their parents to speak for them.

I for one am a moderately able autistic, being in a relationship but not living on my own or ever having had a job. I so badly want to hear from other autistics who need intensive supports. Maybe that will dismantle the myth that only those who presumably can’t speak for themselves, need or deserve these supports. Then again, there is also the myth that those who need intensive support, shouldn’t speak for themselves unless they say what the staff want to hear. And then there is the idea that those who aren’t as capable and are still speaking for themselves, are more capable than they are. That in particular frustrates me, because this myth contributes directly to my likely not ever getting the supports I need.

Autism Treatment and Acceptance Are Not Mutually Exclusive

Oftentimes, there seems to be a dichtomy between those autism advocates who want treatment, and those who want the autistic to be accepted. Usually, parents of people with more severe autistic symptoms and/or intellectual disability want their autistic to be cured, while those autistics with more intellectual and communicative abilities advocate acceptance. This is not always the case, of course, but often it is. Therefore, it is somewhat understandable that autism parents tell autistics that we are not like their child.

What I want to discuss in this post, however, is whether treatment and acceptance are truly mutually exclusive. Of course, a cure that will fundamentally change a perosn’s information processing, is contradictory to accepting that processing difference. However, at this point there is no such cure, like genetic engineering or neurological rewiring, which is what it would take to make autism go away entirely.

Do these autism parents who advocate cure, truly want their child’s every autism symptom to go away/ I do not know, but it is possible that what they truly want to go away are certain aspects of autism that are debilitating to the child. I do not disagree with this. I, too, take medication to help curb my irritability, for example.

Truly, would you want your child’s autism to go away if it made them a very much in their interest invested professor, if a quirky one? It is known that Temple Grandin is autistic, and yet she reached Ph.D. status. If I have to believe her own statements, this is largely due to her special interest and her good ability to empathize with animals. The same likely goes for other “higher-functioning” autistics, but then again these are discredited for disagreeing with the curebies.

Now I get to acceptance. As I wrote in a previous post, accepting the person is different ffrom accepting their every behavior. Hardly any autistic would want themselves or another autistic to be continually aggressive or self-injurious. Also, most parents tht I’ve met online who advocate treatment for their children’s autism, actually love their children to pieces. There are a few who wish their autistic child were taken back by the changelings, so to speak, but these are rare.

So really, is it hypocritical to want treatment for autism if you want to be part of the autistic acceptance movement. While a complete eradication of autism, and thereby autistics, is contrry to acceptance, treatment for the most severe and disabling symptoms, is absolutely not. And this is where views often clash: those with more severely autistic children, want to pretend that treatment will eradicate all autism, and they at the same time pretend that those who disagree, are not autistic at all. Well, fine with me. If you want your child to be like me in terms of functioning, that’s okay, but that is not curing them.

ETA: with my sentence about my understanding that parents want their kids to function like me, I didn’t mean to place myself above autistics who appear to be “lower-functioning”. I realize that’s how it comes across. I do want to say that I understand, for example, that parents want their children to have a meaningful way of communicating or have minimal aggressive or self-injurious behavior. I do not feel that any autistic should be forced into neurotypical appearance.

High-Functioning vs. Low-Functioning Autism: Some Common Assumptions

This post was adapted from a post I originally wrote in 2007 and which I’ve since crossposted to various old blogs of mine. I still like it though.

Autism is a spectrum disorder. There are many differences between individual autistics. Where it gets tricky, however, is when we categorize autistics into specific boxes that are mutually exclusive. This is what happens when we speak of “high-functioning” and “low-functioning” autism. Below, I’m going to write up a list of assumptions about the LFA/HFA divide, and share my comments.

  1. Low-functioning means having an IQ below 70. Well, this is one of several pretty official distinctions being made. The problem is that it’s often hard to determine IQ in people with autism: some people may seem high-functioning at first, but their IQ drops as they age cause of increased developmental demands – something that is extremely common in preemies (autistic or not). Others’ IQ jumps by sometimes as many as 50 points as they learn to use a communication modality that others understand. Here in the Netherlands, autistics whose IQ can be assessed as being in the intellectually disabled range, are considered autistic as well as intellectually disabled, so they essentially have two disabilities that may influence each other and each influence the person’s functioning.
  2. Low-functioning means non-verbal. This is the other kind of official definition. The only thing it omits to say, is that non-verbal does not necessarily mean unable to communicate. Speech, after all, may not be communication (I sometimes hate it when people assume that everything that comes out of my mouth is intended as it comes out), and communication does not need to mean speech.
  3. Autistics will always function at the same level regardless of circumstances. I hate this assumption, and have always hated it, whether you relate it to autism or not – I hated it years before I was labeled autistic or even suspected I was on the spectrum. In my own experience, this prejudice comes in the form of “You’re so intelligent, so …” statements. Some people who make these assumptions, can simply be directed to Stephanie Tolan’s article on asynchronous development, but even those who know about this, tend to have difficulty grasping the concept that I do not always function at the same level. I still have a lot of difficulty grasping this concept myself: that, when I’m overwhelmed, I don’t have skills that I have when I’m in a quiet state, most prominently communication abilities. So, when someone sees me here on the computer typing out a review on the HFA/LFA distinction, they may assume I’m very high-functioning, but you wouldn’t guess so when you’d see me when I’m overwhelmed.
  4. Low-functioning means severely autistic. Well, number of symptoms and functioning level in either of the two relatively official respects, are quite different. In fact, some people with a severe intellectual disability lack the cognitive ability to exhibit some autistic symptoms, such as routines. So are they “low-functioning” because of their IQ, or are they “high-functioning” because they are not severely autistic?
  5. High-functioning individuals do not exhibit certain behaviors, such as self-injury or aggression. So, when someone does exhibit these behaviors, they must be low-functioning? I’m not proud of this, but this belief makes me pretty low-functioning. Often, however, it’s used the other way around, in that people who meet someone’s stereotype of “high-functioning” (eg. the ability to disagree with Autism Speaks in a way that they can read/listen to), is discredited for certainly not having serious problems. This assumption is not only wrong, it is dangerous to autistic people’s wellbeing and health.
  6. High-functioning autistics live independently, while low-functioning autistics don’t. Many factors contribute to an autistic’s ability to live independently. Of course, an intellectual or communicative disability may make it harder, but so does severe executive dysfunction or the risk of certain behavior problems or mental health issues. The concept of independent living is also oftentimes wrongly perceived as black-or-white: some people live independently, but do get home support, or they live in settings with 24-hour assistance but still have their own apartment, or they live with their parents till age 30.
Please note that, again, I am not saying that autistic individuals do not differ from person to person. I am not even saying that there are not various cotinuums of funcitoning. There are, however, so many that it is entirely arbitrary to draw a line between the HFA category and the LFA category. I hope I’ve made this clear in this post.