More Autism Basics: World Autism Awareness Day Thursday, Apr 2 2009 

Okay, since I didn’t get a chance to blog yesterday, I’m writing another one today to make up for it. I “defined” autism in my last post, so let’s chat about the autism spectrum for a bit.

Many people don’t know that autism is a spectrum disorder. National Institutes of Health has a pretty good statement on it. “Different people with autism can have very different symptoms. Health care providers think of autism as a “spectrum” disorder, a group of disorders with similar features. One person may have mild symptoms, while another may have serious symptoms. But they both have an autism spectrum disorder.” That is a pretty good starting point.

I’m not going to get into the political battle that health insurers play with the terms, mainly because that is going to be a series of articles later this month! However, it helps folks understand why some kids seem barely affected and some kids don’t have language. The disorder has differing levels of severity and vastly different ways of showing itself.

There are also a large number of other disorders that can exist with autism. Typically a child with autism has several diagnoses. Hypotonia, or low muscle tone, is commonly associated with autism. Also, children with autism have a much higher population of folks with seizure disorder. 1 in 4 kids with autism have some sort of seizure disorder, and it is believed that autism affects the same part of the brain as epilepsy and related diseases. Motor planning issues like dyspraxia, sometimes called apraxia or motor apraxia, are common. Sensory Integration Disorder is also very common for kids on the spectrum. Speech delays are frequent, but a number of kids on the spectrum do not have speech delays. In fact, if there is no speech delay the child typically will receive a diagnosis of Aspergers Syndrome.

I find the word autism to be telling, so let’s go into some history. Dr. Leo Kanner “discovered” autism, or at least told the world about it in 1943. His paper, “Autistic Disturbance of Affective Contact” is really a fascinating piece of work. The children described are touching, but the clinical language of the day as well as the psychological perspectives are more than a little frustrating to read now. Dr. Kanner was the autism pioneer, and much of the thought regarding autism considered it a psychological condition related to the level of affection and love displayed by the mother.

Now, if you have met the moms of any kids on the spectrum you know that is patent bullshit, but that is what passed for psychology in the 1940s. The “refrigerator mom” theory was widely supported for decades, but was eventually debunked. In fact, PBS has a documentary from their POV series called “Refrigerator Mothers.” I think I’m going to buy a copy so I can see it. The site has a ton of good information and wonderful stories.

Enter Dr. Bernard Rimland, the man who gave us all hope. Dr. Rimland was the founder of the Autism Research Institute, or ARI, and was the first doctor to really push for research on the disorder. ARI served as a clearinghouse for clinical information on the disorder, and eventually the Defeat Autism Now! protocol was born out of that research.

Dr. Rimland was the first to suggest that autism is an autoimmune disorder instead of a psychological disorder, and he also first posited that autism was caused by mercury toxicity from thimerosal, a form of mercury used in vaccines. Unfortunately, rather than funding serious study into the possibility, the CDC held a secret meeting at Simpsonwood discussing the issue with several vaccine makers. They ultimately decided to cover it up, and the CDC issued a “request” for vaccines free from thimerosal.

Luckily the information did come to light, and Robert F. Kennedy Jr. wrote a scathing article about the issue called “Deadly Immunity.” He also spoke on MSNBC about it, and I’ve linked it below.

Every time I read and talk about this I get so mad I can hardly see, so I’m going to stop here. Up tomorrow: Aspergers Syndrome.

World Autism Awareness Day Thursday, Apr 2 2009 

Or World Autism Day, depending on who you ask. Today is a pretty good day to talk about all things related to autism, but the key is getting people to understand. I am committed to posting at least once a day on my blog during the month of April, which is National Autism Awareness Month, just to help educate and inform. So I think I’ll start today with the basics.

Autism Awareness Ribbon

Autism Awareness Ribbon

What is autism? Well, according to the Diagnostic and Statistical Manual Volum IV (DSM-IV), you have autism if:

A. A total of six (or more) items from (1), (2), and (3), with at
least two from (1), and one each from (2) and (3)

(1) qualitative impairment in social interaction, as manifested by
at least two of the following:

a) marked impairments in the use of multiple nonverbal behaviors
such as eye-to-eye gaze, facial expression, body posture, and
gestures to regulate social interaction

b) failure to develop peer relationships appropriate to
developmental level

c) a lack of spontaneous seeking to share enjoyment, interests, or
achievements with other people, (e.g., by a lack of showing,
bringing, or pointing out objects of interest to other people)

d) lack of social or emotional reciprocity ( note: in the
description, it gives the following as examples: not actively
participating in simple social play or games, preferring solitary
activities, or involving others in activities only as tools or
“mechanical” aids )

(2) qualitative impairments in communication as manifested by at
least one of the following:

a) delay in, or total lack of, the development of spoken language
(not accompanied by an attempt to compensate through alternative
modes of communication such as gesture or mime)

b) in individuals with adequate speech, marked impairment in the
ability to initiate or sustain a conversation with others

c) stereotyped and repetitive use of language or idiosyncratic
language

d) lack of varied, spontaneous make-believe play or social
imitative play appropriate to developmental level

(3) restricted repetitive and stereotyped patterns of behavior,
interests and activities, as manifested by at least two of the
following:

a) encompassing preoccupation with one or more stereotyped and
restricted patterns of interest that is abnormal either in
intensity or focus

b) apparently inflexible adherence to specific, nonfunctional
routines or rituals

c) stereotyped and repetitive motor mannerisms (e.g hand or finger
flapping or twisting, or complex whole-body movements)

d) persistent preoccupation with parts of objects

B. Delays or abnormal functioning in at least one of the following
areas, with onset prior to age 3 years:

(1) social interaction

(2) language as used in social communication

(3) symbolic or imaginative play

C. The disturbance is not better accounted for by Rett’s Disorder
or Childhood Disintegrative Disorder

I understand that doesn’t really give you a definition, but may help you understand that autism is not a cut and dried diagnosis, like a sinus infection or even diabetes. The Autism Society of America defines autism as “a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a “spectrum disorder” that affects individuals differently and to varying degrees. There is no known single cause for autism, but increased awareness and funding can help families today.

Awareness can help. Many people I have spoken with don’t really understand why awareness helps families with autism. Let me give you some examples from my life where awareness would have made life easier. First off, my son Raymond has High Functioning Autism. Much of the time he presents like a typical kid. However, when you begin to engage him you start to see his issues. One of his issues is auditory processing. He has acute hearing but has difficulty processing and making sense of sounds. Imagine how difficult simple things like shopping and riding in a car could be! Well, when I am in public and Raymond starts to melt down, I am typically very calm. I attempt to redirect him, offer him fidgets or whatever toys I have stuffed in my jacket pocket, but I keep on shopping or doing what I’m doing.
I can tell this frustrates some people. I get the looks. You know, the “why can’t you control your kid” looks that parents get from non-parents. I ignore them now, but when we were first discovering these things I actually had people come up to me and ask “what are you doing to that child.” Naturally I had some choice words for them, but on reflection I wish I could address them again and say the following:

“My son has autism, a severe developmental disorder. He has difficulty remaining calm in crowded or busy surroundings. Unfortunately, I still have to buy groceries and clothing or my family will walk around naked and starving. If this inconveniences you, I’m sorry, but understand it is only an inconvenience to you. It is much more than that to me. In the future, please try to be considerate of parents who are trying to handle their children. They might be going through something you cannot understand. Thank you.”

So awareness helps. Be kind, and understand that people who are not typical have the same rights to public places that you do. If you are not a tolerant person, give it a try. I promise you will get more than you give.