Quirkiness: The Broader Autism Phenotype #AtoZChallenge

Welcome to another week and another day in the A to Z Challenge on autism. Today’s post is called “Quirkiness” because I couldn’t think of any other relevant word starting with the letter Q. I bet other people have trouble with this letter too. I will focus on the broader autism phenotype, which basically describes people who are quirky. This post is quite involved, so I hope I have explained things properly.

The broader autism phenotype (BAP) describes people who have similar but milder traits than those found in autism spectrum disorder people, and who are not impaired in their functioning by these traits. The broader autism phenotype is particulalry useful for research into the heritability of autism. It is likely that autism is largely a genetic disorder, and this idea is supported by research into the BAP. Non-autistic parents of autistic children more often than parents of neurotypical children exhibit the broader autism phenotype.

So what is the broader autism phenotype? It describes traits that are related to autism and are more common among family members of autistic people. According to Losh et al. (2008), this includes characteristics such as a socially reticent or aloof personality, untactful behavior and fewer high-quality (ie. emotionally reciprocial) friendships. It also includes a rigid personality, little interest in novelty, difficulty adjusting to change and a perfectionistic or overly conscientious personality. Family members of autistic people also exhibit more fear or neuroticism and are at a higher risk of developing anxiety disorders.

Non-autistic parents’ autistic traits are, for research purposes, commonly measured by the broad autism phenotype questionnaire (BAPQ). The BAPQ focuses on the traits and behaviors I mentioned above.

Only 10% to 20% of cases of autism can be explained by a known biological cause, such as a genetic mutation (Sasson et al, 2013). These are often sporadic mutations, meaning they occur in the autistic person only and not their parents.

With the broad autism phenotype, autism symptoms do carry over from one generation onto the next. A large number of autistic children in a study by Sasson et al. (2013) had one parent who displayed the broad autism phenotype. If both parents displayed the BAP, a child was also more likely to be autistic than not. The presence of the broader autism phenotype was also associated with the severity of autistic symptoms. In other words, if one or both parents had autistic quirks, an autistic child was more likely to be more severely affected. Maxwell et al. (2013) found the same: a higher score on the BAPQ in parents was related to more severe autistic symptoms (as measured by the Social Responsiveness Scale) in their children. The parents’ BAPQ score was not related to the child’s IQ, which is a common measure of functioning level in autistics.

References

Losh M, Childress D, Lam KSL and Piven J (2008), Defining Key Features of the Broad Autism Phenotype: A Comparison Across Parents of Multiple- and Single-Incidence Autism Families. Am J Med Genet B Neuropsychiatr Genet, 147B(4):424-433. DOI: 10.1002/ajmg.b.30612.


Maxwell CR, Parish-Morris J, Hsin O, Bush JC, and Schultz RT, The Broad Autism Phenotype Predicts Child Functioning in Autism Spectrum Disorders. J Neurodev Disord. 2013; 5(1): 25. DOI: 10.1186/1866-1955-5-25.


Sasson NJ, Lam KS, Parlier M, Daniels JL, Piven J (2013), Autism and the Broad Autism Phenotype: Familial Patterns and Intergenerational Transmission. J Neurodev Disord, 5(1):11. doi: 10.1186/1866-1955-5-11.

Psychiatric Medications for Autism #AtoZChallenge

Welcome to another day in the A to Z Challenge, in which I focus on autism. Today, I will discuss psychiatric medication as a treatment for autistic symptoms.

Many autistic children and adults take one or more psychiatric medications. Most of these are prescribed off-label, which means they have not been approved by the U.S. Food and Drug Administraiton (FDA) or similar agencies in other countries for the specific purpose of trating autistic symptoms, but the doctor feels they may benefit an autistic person anyway. In 2006, risperidone (Risperdal) got approved for the treatment of irritability in autistic children ages five to sixteen. In 2009, aripiprazole (Abilify) got approved for this purpose too. Both of these medications were originally developed for treating psychotic symptoms in people with schizophrenia, but they are commonly used for treating irritability in people with conditions like bipolar disorder too.

Antidepressants are also commonly prescribed to autistic children and adults because of their potental effectiveness in treating anxiety, depression and obsessive-compulsive symptoms, all of which are common in autistic people. Fluoxetine (Prozac) has been FDA-approved for treating both obsessive-compulsive disorder and depression in childern age seven and up. Citalopram (Celexa) was specifically studied for its effectiveness in treating repetitive behaviors in autistic children, but was not found to be very effective.

Since many autistic people have comorbid attntion deficit (hyperactivity) disorder, many also take stimulants like methylphenidate (Ritalin or Concerta). Some autistic people take anticonvulsants, usually for epilepsy, but these medications can also be used as mood stabilizers.

Many autistic people have strong opinions on medication. For example, many people feel that medications are too often used in a situation where there is limited support in order to drug someone into compliance. A few years ago, I read of a study on intellectually disabled people in institutions, which compared the classic antipsychotic Haldol to Ripserdal and placebo. Each, including placebo, was equally effective, presumably because the people in the study got quite a bit of attention from researchers and this decreased their aggression. I have mixed feelings about this. I may’ve written earlier that I was prescribed Risperdal a week before moving into independent living in 2007. In this situation, clearly the medication was used as a substitute for proper care. However, since going on Abilify (and Celexa) in 2010, I have also been feeling significantly better and more able to cope. When you get your child on medication, it is important to change the medication only and allow other circumstances to remain as much the same as possible. Otherwise, you won’t be able to test whether the medication works.

Obsessive and Compulsive Behaviors in Autism #AtoZChallenge

Welcome to day fifteen in the A to Z Challenge on autism. Today, I will focus on obsessive and compulsive behaviors as they occur in autistic people.

The obsessive-compulsive spectrum encompasses a number of disorders that may co-exist with autism spectrum disorders. Even people with autism without an additional diagnosis often display obsessive an compulsive behaviors. In fact, the repetitive behaviors that are a core symptom of autism are often thought of as obsessive.

The first way in which obsessive and compulsive behaviors present themselves is in autistic people’s obsessive interests. Autistic people often engage in one specific interest that may be unusual in either intensity or focus. I will focus on unusual fasicnations when we arrive at the letter U. The obsessive nature of interests however also manifests itself in the way in which people often are hard to break free from their special interest. Many autistic people are cheerful or even elated as long as they can engage in their special interest and get a bit depressed when they’re being redirected.

Collecting is a common type of special interest in autistic people. This can go to the extreme of hoarding, which is on th eobsessive-compulsive spectrum. The main feature of hoarding is an irrational, persistent difficulty to discard things that the person no longer needs and that aren’t of value. This is a long-standing pattern, not just related to a single life event (such as the inability to discard something inherited from a loved one). Hoarding is not simply the passive acccumulation of stuff that a person doesn’t discard; it involves an actual effort not to discard objects. Autistic people commonly collect seemingly worthless items such as bits of string or paper scraps. This may be easily seen as hoarding by non-autistic family members. When compulsive collecting interferes with a person’s organizational or decision-making skills, it is time to seek help.

As I said, more classic obsessive-compulsive traits or even full-blown obsessive-compulsive disorder (OCD) are also common in autistics. This may be related to unusual fears, which I will also discuss in my letter U post. Obsessive-compulsive behaviors may involve repeated counting, checking or washing, but in my own case, repeatedly asking the same questions was also part of it. Repetitively talking about the same subject, may also be a compulsion for an autistic person. For example, my husband and I are trying to prepare for me to go live with him. A lot is still unclear, but I have a compulsion to tell the staff every detail of what we’re trying to work on repeatedly.

Lastly, the stereotypical, self-stimulatory behaviors that are a core symptom of autism, may also be seen as compulsions. For example, trichotillomania, the compulsive pulling out of one’s own hair, is on the obsessive-compulsive spectrum in the DSM-5 (the psychiatrist’s manual). This condition is also fairly common in autistics, as are other seemingly compulsive movements. Then again, these behaviors can also be seen as a sensory symptom, which I will discuss in my letter S post.

Neurodiversity #AtoZChalenge

Welcome to another day in the A to Z Challenge on autism. I can’t believe we’re halfway through the challenge already! Today, for the letter N, I will explaint he concept of neurodiversity.

Neurodiversity refers to the idea that autism, bipolar disorder and other neurological or mental disorders are not inherently pathological. Rather, they result from normal variations in the human genome and should be seen as natural ways of being and self-expression. The diversity of neurotypes need therefore be seen as similar to the diversity in gender expression, sexual orientation or ethnicity.

The neurodiversity movement rejects the idea that autism and other neurological conditions need to be cured, or even that they can be cured. It sees one’s neurological type as an essential part of one’s being, and therefore, changing someone’s neurotype will change their essence.

Some people within the neurodiversity movement say there is no such thing as a neurodiverse person. Rather, neurodiversity encompasses all people of all neurological types, including so-called neurotypcal people.

Neurodiversity activists see the spectrum of neurological expression as a sort of bell curve, whereby on the edges are people who are often seen as too impaired to accommodate. Yet these people might provide the cues to solving important problems or might be exceptionally able to contribute in a specific way. Some extremist neurodiversity advocates even see autistic people as somehow evolutionarily advanced.

Neurodiversity activists, for clarity’s sake, do advocate for supports for autistic and otherwise neuroatypical people. They embrace the social model of disability, which sees disability as originating from a lack of accommodation for people with impairments, rather than from the impairments themselves. Neurodiversity activsts advocate for inclusive education, independent living supports and occupational training which allows the autistic or otherwise neuroatypical person to remain as they are rather than conform to a majority view of “normal”.

A problem with neurodiversity and the osicla model of disability is that autism and other neurological disorders do impair people, whereas for example being gay or a person of color does not. They are often also the more capable autistic people who advocate for neurodiversity. This may lead some people to an exclusionist approach, whereby “high-functioning” autistics do not need a cure whereas “low-functioning” autistics do. I advocate looking at what symptoms are inherently impairing and what symptoms are not, rather than saying that certain people need a cure and others do not.

Mental Illness and Autism #AtoZChallenge

Welcome to day thirteen in the A to Z Challenge. I am late once again to write my post, because I have still not mastered the skill of planning ahead and I was out of town all day.

Today’s post is on mental illness. Autism, of course, is not a mental illness; it’s a developmental disability. However, many people with autism experience mental health problems or mental illness. In fact, studies show that as many as 65% of people with Asperger’s Syndrome have a co-exisitng psychiatric disorder.

Anxiety and depression are the most common mental health problems experienced by people on the autistic spectrum. It may be hard to diagnose these problems because of autistic people’s different ways of expressing and connecting to emotions. For example, I once read about a boy with Asperger’s Syndrome who suddenly stopped launching into lengthy monologues about his topic of interest. People thought that he was doing better, because, after all, he was displaying fewer autistic symptoms. On closer observation though, the boy was found to be severely depressed.

Autistic people might display a number of symptoms that indicate they are suffering from comorbid depression or anxieyt. For example, they may become completely withdrawn, may experience an increase in obsessional behaviors, or may have suicidal tendencies. Paranoia, aggression or substance abuse are also indicators that the person with autism is experiencing mental illness.

Treatments that are effective for anxiety, depression or obsessive-compulsive disordeer in the general population, often are also effective for higher-functioning individuals with autism experiencing these symptoms. However, it is important that psychiatrists be aware of the person’s autism spectrum disorder. For example, if a person is experiencing depression because of loneliness, they may need to be provided with social skills training in addition to cognitive-behavioral therapy or medication.

In the above paragraphs, I mainly talked about mental health problems in people with Asperger’s Syndrome or high-functioning autism. Of course, autistic people with an intellectual disability or those who are non-verbal, can also experience mental illness. In fact, it is thought that mental illness is more common in people with an intellectual disability than in the general population. In people with an intellectuall disability, it is hard to diagnose depression and anxiety. Depression may often be misdiagnosed as cognitive decline or dementia. People with an intellectual disability may show aggression as a symptom of depression too. This may lead to them being misdiagnosed and not getting adequate treatment.

Loneliness in Autistic People #AtoZChallenge

Welcome to day twelve in the A to Z Challenge on autism. Sorry for being late to publish my post again. Today, my post deals with a common experience in autisitc people: loneliness.

Autistic people by definition have trouble forming friendships, especially with non-autistic people. For this reason, many autistic people feel isolated and lonely. I am no exception. Other than my husband, I have no close friends, though I have a ton of Facebook friends. Most I don’t really know.

in adolescence particularly, I felt lonely. I remember writing in my diary a month into starting secondary school that I realized everyone had built friendships already and I hadn’t. In elementary school, I had usually had one or two friends, though I had trouble interacting with them too. Most of my elementary school friends were themselves quite isolated too.

It is a myth that autistic people are not affected by loneliness. In fact, many adults with autism experience depression and low self-esteem because of their lack of quality friendships. However, depression and anxiety also commonly cause autistic people to feel lonely and to self-isolate. I, for one, did not attempt to socialize anymore after I realized I clung too much to peoople who didn’t in fact considier me a friend. By the end of eighth grade, I was seemingly fine with the fact that I had no friends, but was actually quite depressed.

Even autistics who do have friends, can feel lonely. This is because autistic people have a different perception of friendship than neurotypicals. For example, neurotypical people usually associate friendship with affection, companionship and intimacy. Autistic people often don’t experience these qualities, or experience them to a lesser degree, in their friendships. They may therefore be lonely because of having a poorer quality friendship. For example, I sometimes refer to some of my Facebook friends as actual friends in conversation, but I recognize that the relationship I have with them is not as close as that of other people with their friends.

There are many ways to cope with loneliness. For example, autistic people might want to connect to other autistic people. There are play groups for autistic children and social and support groups for teens and adults with autism in most urban areas. This not only will help autistic people connect to others, but they wil also be able to find someone whose experience is similar to theirs. Hence, they may feel less disconnected from their environments, which can also be a form of loneliness.

Of course, it is also important that autistic people develop their interpersonal skills. In the Netherlands, many mental health agencies provide specific programs for adults with autism, where they can also follow social skills training. This may help them build and keep friendships and thereby lessen loneliness.

Lastly, many autistic people find that pets can help them feel less lonely. I for one don’t have a particularly close connection to our two cats, but that is possibly because they’re at our apartment, where my husband primarily cares for them.

Kanner and Asperger: Two Autism Pioneers #AtoZChallenge

Hi readers, it’s Monday again! Welcome to another day in the A to Z Challenge, in which I focus on autism. Today, I will discuss the two autism pioneers, Leo Kanner and Hans Asperger.

The term “autism” comes form the Greek word “autos”, meaning “self”, and describes people who are particularly withdrawn. The term has been in use for about 100 years. It was first used by Eugen Bleuler, a Swiss psychiatrist, to describe a subset of symptoms of schizophrenia.

Leo Kanner was born in 1894 in a small village in Austria-Hungary. He came to the United States and became a child psychiatrist at Johns Hopkins University. In 1943, he published a paper called Autistic Disturbances of Affective Contact. In this paper, he described eleven children who had a strong desire for aloneness and obsessive insistence on sameness.

Also from Austria-Hungary, Hans Asperger was born in 1906. In 1944, he published a description of “autistic psychopathy”. Children with “autistic psychopathy” were described as displaying a lack of empathy, little ability to form friendships, one-sided conversations, intense absorption in a special interest, and clumsy movement.

Unlike Kanner’s, Asperger’s work remained largely unknown. In 1981, Lorna Wing did write about Asperger’s Syndrome and thereby challenged Kanner’s original definiton of autism. Asperger’s work was eventually translated into English in 1991.

Despite common belief, Kanner’s and Asperger’s disorders as originally described were quite similar. Kanner’s original children were mostly highly intelligent. One reason that Asperger highlighted this, calling his children “little professors”, while Kanner didn’t, might be that Asperger resided in then occupied Austria. Given that children with disabilities were often killed by the Nazis, Asperger might’ve had a motive to present the children he described in as positive terms as possible.

Jobs for Autistic People #AtoZChallenge

Welcome to day ten in the A to Z Challenge on autism. Today’s post is on employment and jobs for autistic people. I personally do not have a paid job, but many autistic people, even those with co-existing intellectual disabilities, can be successfully employed. They do need to choose jobs that utilize their strengths and their employer needs to be willing to accommodate them.

Already in 1999, Temple Grandin wrote an excellent article on choosing the right job for someone with autism or Asperger’s Syndrome. She explains that autistic and Asperger’s people usually have very poor working memory and cannot multitask. While some people are visual thinkers, like herself, some autistic people are more verbal thinkers, being good at math and/or memorizing facts. In the tables attached to the article, Grandin lists jobs that are bad for autistic people, jobs that are good for visually-thinking autistic people, jobs that are good for verbal thinkers with autism, and jobs that are good for non-verbal or intellectually disabled autistics.

Of course, being able to perform certain tasks does not guarantee being able to get a jbo. In today’s society, increasing demands are placed on social skills and flexibility, precisely the skills which autistics invariably have difficulty with. Many countries, including the Netherlands and the United States, have laws prohibiting discrimination on the grounds of disability. However, a person must prove that they are otherwise qualified for the job and that they are being discriminated against based on their disability.

How many people with autism are employed? This is not precisely known. It is however thought that fewer autistic people are employed than people in most other disability groups. For example, a study cited here says that only 32.5% of young adults with autism spectrum disorders worked for pay. The National Autistic Society in the UK presents an even grimmer statistic: according to them, only 15% of autistic people are employed full-time. Given that the benefits system in the UK is quite strict on people with mental disabilities (and it’s probably worse in the U.S.), 51% of autistic people have spent time without employment or benefits.

Intelligence and Autism #AtoZChallenge

Welcome to another day of the A to Z Challenge on autism. Today, I will discuss autism and intelligence.

First, what is intelligence? Intelligence is generally defined as a person’s overall cognitive ability across a number of domains, such as verbal comprheension, perceptual reasoning, working memory, etc., as measured by standardized IQ tets. Examples of IQ tests include the Stanford-Binet test used mostly in the U.S. and the Wechsler scales used more in Europe.

An average IQ score is 100. IQ follows the bell curve by which, the further a score deviates from average, the fewer people have this score. The standard deviation used on IQ tests is 15 on the Wechsler scales. This means that an IQ of 70, which is defined as the cut-off for intellectual disability, is two standard deviations below the norm. Approximately 2% of the population have an IQ below 70.

On IQ tests, the score is usually divided in a verbal commmponent and a non-verbal or performance component. Autistic people commonly have a gap between their verbal and non-verbal intelligence quotient. Some non-verbal autistic people show a dramatic increase in their IQ scores once they learn to type. Other people, usually diagnosed with Asperger’s Syndrome, have a high verbal IQ but a lower or even below-average non-verbal IQ.

It used to be thought that autistic people usually had a low IQ or intellectual disability. Current estimates are that approximately 40% of children with autism spectrumd isorder also have an intellectual disability. Children diagnosed with Asperger’s Syndrome by definition do not have an IQ below 70. However, some people with Asperger’s score as borderline intellectual functioning (IQ between 70 and 85) and may benefit from services for people with an intellectual disability.

IQ may be a predictor of how capable a person will be of becoming independent. However, other factors play a role too, such as adaptive functioning. Young children with Asperger’s usually do not have problems with self-help skills or adaptive funcitoning (other than that required for social interaction). However, as children mature, more problems with adaptive functioning in general may arise. I unfortunately have never had an assessment of adaptive functioning, so I don’t know how I’d score. However, people are usually surprised at my ability to use the computer but not, for example, cut up my own food or take proper care of my personal hygiene without prompting.

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.