Myths & Misconceptions About Autism

At present, Asperger's Disorder aka Asperger's Syndrome is currently considered part of the Autism Spectrum Disorder. It shares many of the characteristics of ASD, the most common being social problems and PDD-NOS (fancy way of saying global delays). As mentioned in previous blogs, Aspies tend to be very intelligent, although as children it can be very difficult to determine just how intelligent they are.

There are also similarities in Sensory Integration. Sensory and stimuli input can vary from situation to situation, even with the same child. With some Aspie's like my daughter, this leads to Sensory Seeking behavior. That means that she will look for situations or create situations where she physically feels something intensely. This happens when she will eat something with an extreme flavor or temperature, like lemon juice, jabanero peppers, pepperoncini, or frozen french fries, frozen fruit, frozen bread. Most times those things turn her completely off, and she needs simple flavors and textures, like pasta or yogurt or soup. It also manifests in my daughter as snuggling with a super-soft blanket, wearing only soft cottony clothing, refusing to wear hats that are snug-fitting. In her therapies, she gets to play with sand, dried beans, uncooked rice, a water table, and other textures. She loves the sand now, but I remember her first few visits to the beach when she cried and cried and cried, literally upset at the texture of the sand and the sound of the waves.

There have been times where the Sensory Seeking behavior is quite worrisome to me. I will be cooking, and she becomes fascinated with the gas stove and the fire on top. She understands that the fire heats the pan, thus cooking the food, and she understands that the pan will be hot. So she will say "That pan is on fire. That pan is hot. If I touch it, it will hurt." Then she will procede to touch the pan. She may or may not cry at the pain... and sometimes I think it really doesn't hurt her when she does it. If it hurts, she cries briefly, then asks for the frozen box of spinach that is used for Bad Boo Boos. She then enjoys the feel of the frozen icy spinach box on her skin.

There are several misconceptions out there about Autism in general, and the first two might make you scratch your head because they conflict.

1. MYTH: All Autistics are mentally retarded.


2. MYTH: All Autistics are savants in one way or another.

The fact is that many Autistics are mentally retarded. I think the only think that can be agreed upon is that we don't know which caused the other, or if one caused the other at all. There are various other metabolic and genetic disorders that can be associated with Autism and Asperger's, but I feel as if it's like "which came first, the chicken or the egg?" My hypothesis is that they are mutually exclusive, but feed off of each other. That they are both genetic as well as environmental.

It's also true that generally speaking, most Asperger people are very intelligent. But they are not all geniuses. So I hope that the list I posted previously of famous Autistics and Aspergers wasn't misleading... my intent was to show that ASD and AD is not so debilitating that someone with ASD can't have a good quality of living. That not all are so severe that they can't function. Not all are severely or moderately mentally retarded. I'm not stating this very eloquently at all, so I want to share this article that was written by an Autistic that doesn't speak. It's VERY eye-opening, and dispels many myths about Autism.

Facilitated Communication Symposium Whittier, CA April 3, 2003

Myths About Autism and Mental Retardation (click here for original article)

by Sue Rubin

As a really autistic person I am definitely qualified to address the topic of myths about autism and mental retardation. The first myth I would like to attack is that 75% to 80% of all people with autism are mentally retarded. Some professionals have reduced that number to 50% because so many of the young children now being diagnosed have Asperger’s Syndrome or High Functioning Autism. Seventy-five, eighty, or fifty – they are all wrong. Those of us who don’t speak, or speak echolalically, are counted as retarded. We also score in the retarded range of I.Q. tests, so it is reasonable that we are assumed to be retarded. What we have found through use of Facilitated Communication is that these low functioning people have at least normal intelligence with lots of movement problems masking their intellect.



I am a great example. Without facilitation I still test as a retarded person because I can’t manipulate objects to pass a non-verbal intelligence test. When allowed to type, which I can do independently, I can answer the same questions. For example, when asked to put similar cards together, I couldn’t do it. But when the cards were labeled A, B, C, D, etc., I was able to type which cards belonged together. Clearly I understood the task and could answer correctly, but not in the standard way.



For those of you who don’t know me, I am a Junior at Whittier College with an A- GPA and a member of the history honor society. I type independently with my staff, especially in class and when I meet with my professors. I use physical touch when I am doing a long paper and need speed. So, you have a college student scoring as a retarded person on standardized I.Q. tests, due to a movement disorder.



Movement difficulties are the bane of my life. When people see me, even from a distance, they immediately assume I am retarded because of the way I move. When they ask me to do something and I don’t immediately respond, they are convinced I am retarded. The really awful thing is that my brain wants to move and my body won’t. The movement problem is responsible for my lack of speech. I hear words properly in my mind, and can say them properly in my mind, but my mouth doesn’t work. Great ideas are always in my head, but great words don’t come out of my mouth.



Great ideas were not always in my head. In fact, for the first thirteen years of my life, no ideas were in my head. This may be an example of true retardation – not thinking. But after I began using Facilitated Communication, my mind got organized and I began to think. I believe a person’s autism can prevent him from thinking. I also believe a person can learn to think like I did. I am sadly an example of a person who must always exercise her mind or I will quite decidedly regress to a non-thinking person.



I would next like to take to task the myth that people with autism are lacking empathy. I can’t speak for Asperger’s Syndrome or high functioning autistic people because they are very different from us, but the people I know who are non-verbal and FC users like me, are very empathetic. In fact, we are definitely sucked up into other people’s emotions and experience them as if they were our own. The fact that my face doesn’t show the emotion I feel leads people to believe I m not experiencing the emotion. (Jessica's Note: As a mom to an Aspie, I can tell you that there is very high sympathy and emotion with Asperger's Syndrome)



The myth that we are impervious to pain is another area requiring explanation. Sometimes we really don’t feel pain – like the time I pulled out a handful of hair a few years ago. However, at other times I feel pain more acutely than normal people – like when I brush my teeth. (Jessica's Note: Again, very true of my Aspie, to the point where she exhibits sensory seeking behavior)



The last myth I would like to destroy is the one that would like to limit us to a life of boredom in a restricted environment. Many people think that because we need support to do just about everything, we don’t deserve to live a normal life with friends and freedom to make our own decisions. We do need help, but we love the same things you do. We want to live in our own house or apartment and do productive work or attend school, and be surrounded by peers who love and respect us as friends and intellectual equals who just need a little help.

I also found this wonderful article about Myths about Autism, Retardation, and PDD-NOS.

AUTISIC DISORDERS, ASPERGER'S SYNDROME AND Pervasive Developmental Disorders-Not Otherwise Specified (PDD-NOS): (click here for full article)

AUTISM:

Autism, once thought to be caused by a failure to bond with parents, particularly the mother, is now known to be a complex neurological disorder affecting social interaction, communication, and sensory processing. Autism is a developmental disability which occurs in approximately 15 out of every 10,000 individuals (This is the most commonly quoted statistic, but if all Pervasive Developmental Disorders (PDD) including Asperger's Syndrome and PDD-NOS are included then the incidence is much higher.) and is four times more common in boys than girls.

Often people with autism appear to be in a world of their own, unaffected by their surroundings. To a certain extent this may be true; lower functioning autistic people are often unaware of expected behaviors, communication, and other people. Autism affects development of reasoning, social interaction, and communication skills; most autistic children and adults have deficits in verbal and nonverbal communication. Autistic individuals may engage in repeated body movements (hand flapping, rocking), have unusual responses to people, and show fascination with objects. Most people with autistism are resistant to changes in routine or in their environment and many be hyper- or hypo-sensitivities to touch, sound light or other stimuli. (Jessica's Note: I see this with my daughter)

Autism occurs along a spectrum, meaning that the symptoms and characteristics can occur in a variety of combinations, from mild to severe. No two individuals with autism are exactly alike, even in the way their autism shows itself. In the DSM-IV, the manual used by professionals to diagnose mental disorders, autism falls under the category of Pervasive Developmental Disorders, which includes Autism, PDD-NOS (not otherwise specified), Asperger's syndrome and Rett's syndrome. All of these conditions are often referred to as "autistic spectrum disorders."

The causes of autism are unknown, although there is much speculation and research conducted into this mysterious disorder. Some people maintain that autism is caused by metabolic or immune disturbance, while there is also evidence for a genetic component.

Autism is diagnosed through observation of a child's communication, behavior, and development. It is often difficult to find a professional with sufficient experience to properly assess and diagnose autism in a child and even more difficult to find someone willing and able to diagnose an adult. It is important to have a child assessed as early as possible because early intervention makes the biggest difference to the final outcome for anyone with a developmental disability such as autism.

Not all autistics are the stereotypical isolated, rocking child which often comes to mind. Some mildly affected individuals may become independent adults who marry, hold jobs, and raise children. They may experience more difficulties with regulating social interaction and appear awkward. While 70-80% of those diagnosed with autism also test as mentally retarded, many high functioning autistics have average or above average IQ's. (Jessica's Note: Remember that this statistic is likely much closer to 50%)

At the "high functioning" end of the spectrum are Asperger's syndrome, Pervasive Developmental Disorder - Not otherwise specified (PDD-NOS), and high functioning autism. At this end of the spectrum, autistic symptoms blend with "normal" behaviour and development. They are all characterised by typical autistic characteristics but to a milder or limited degree. The distinction between these conditions is unclear at best, however, there are some differences.

HIGH FUNCTIONING AUTISM:

High Functioning Autism (HFA) is not a clearly defined diagnosis. Rather, it is a label given when someone meets (or met as a child) the diagnostic criteria for autistic disorder but is able to speak and has an average or above average IQ. The primary distinction between HFA and Asperger's syndrome is early development - primarily of language. High functioning autistics are often mis-labelled with Asperger's Syndrome if speech is adequate at the time of assessment.

ASPERGER'S SYNDROME:

Asperger's syndrome (AS) is a type of high functioning autistic spectrum disorder in which there is no clinically significant delay in language and an IQ of at least average (often higher). Although people with AS learn to speak at or near the usual age, they usually have an odd style of speech and difficulties with nonverbal communication. Many people with AS have fine and/or gross motor skill delays although this is not necessary for a diagnosis. People with AS also frequently have difficulties with math and with organizational skills. (Jessica's Note: Much of this appears to be true with my daughter, although it's yet to be seen how her math skills are, and she often compulsively organizes objects)

PERVASIVE DEVELOPMENTAL DISORDER NOT OTHERWISE SPECIFIED:

PDD-NOS is the diagnosis given when a child or adult has significant autistic-like traits but does not meet enough of the criteria for a diagnosis of a specific PDD such as autistic disorder or Asperger's syndrome. The autistic characteristics of someone with PDD-NOS can vary in number, severity, or age of onset. While most people with PDD-NOS are high functioning, some are severely affected but have too few of the necessary characteristics for another diagnosis.

COMMON MISPERCEPTIONS ABOUT AUTISTIC SPECTRUM DISORDERS:

It is a common misperception that all autistics are identified and labelled in childhood as some high functioning autistics and people with Asperger's syndrome are able to compensate for their disability sufficiently to avoid identification. High functioning autistics may be considered learning disabled, eccentric, awkward, "nerdy," immature, too mature, gifted, lazy, or a combination of these. While some of these labels may be accurate, none of them adequately define the problems faced by a person with autism, or the appropriate treatment for these difficulties.

The difficulties of people with high functioning autistic spectrum disorders are similar in some ways to those with more severe forms of autism, but they are also different. The main problems are usually around socialization and social communication. High functioning autistics often appear to the unfamiliar observer to be simply awkward or eccentric but the difficulties are much more profound. As with other forms of autism, the best outcomes are achieved with early and appropriate intervention.

Drs. Frank and Kyle Cushing have considerable experience in differentially diagnosing all of the above conditions and are able to provide recommendations for the best ways to educate and integrate people who suffer from these difficulties into as mainstream a life as possible.