vaccines and autism

because someone asked...no really I've been asked!



What do you think about childhood vaccines being linked to autism?


It is a very intense arguement in the ASD community. Personally, I think the Danish study that made the link was flawed, but I also do not trust our CDC or the Congressional findings on the matter that completely discount the link either.
It is definately an organic condition of the nervous system. I think genetics play a role (a BIG one), and I think enviornment does too. Knowing what I know now, I absolutely would not vaccinate or get a flu shot today. No way. That said, I do not believe that Abby's autism is the sole result of MMR or other vaccinations she received. I think she was genetically predisposed, she does not have the disentigrative type of autism, often blamed on the vaccinations, but I would not rule out that the vaccinations could have escalated a potential condition into a very real one and may have worsened what might have been very mild.
I went to an interesting conference today that dealt with some of this stuff, presented by a neurosurgeon. It was truely facinating and has pretty much cemented my feelings against vaccinations. There are too many unknowns and there are certain genetic predispostions that are obviously present in our gene pool that would make me wary of introducing any future vaccinations.

Sorry I rambled on and on. If anyone wants more on this matter I have a ton of links

Abby was officially diagnosed in December, just before her third b-day. Jimmy was in denial for a full year before that. Professional after professional had begun to warn of the possibility by the time Abby was two, but no one in my family or his would even hear of it. It was very difficult. I felt very scared and very alone. Her extreme reactions had made it near impossible for me to take her anywhere and by the time we left for CA last summer, I was exhausted. Thank goodness by November, we were both prepared to face reality. He is a wonderful partner in this struggle now. :) He really relies on me to do all the legwork and reading, to attend conferences and obtain any videos or lectures on CD that I can find, but he is always ready to hear about what I've learned and comes to as many of Abby's Team Meetings and evaluations as he can. He would do more, but he alreay has a full-time job and learning about Abby's disorder and possible interventions is a full-time job in itself, it really is. Not to mention trying to find money. Our insurance won't cover anything. Grrrr.

just a little diagnostic criteria...(but for autism this time)

Some Autism information


Some people have asked me about austim and diagnosis, etc. here is the criteria:

DIAGNOSTIC CRITERIA FROM DSM-IV AMERICAN PSYCHIATRIC ASSOCIATION PERVASIVE DEVELOPMENTAL DISORDERS

299.00 Autistic Disorder

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:

Marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
Failure to develop peer relationships appropriate to developmental level
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)
Lack of social or emotional reciprocity
(2) qualitative impairments in communication as manifested by at least one of the following:

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 gestures or mime )
In individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
Stereotyped and repetitive use of language or idiosyncratic language
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 one of the following:

Encompassing preoccupation with one or more stereotyped patterns of interest that is abnormal either in intensity or focus
Apparently inflexible adherence to specific, nonfunctional routines or rituals
Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
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:

Social interaction
Language as used in social communication
Symbolic or imaginative play.


And now in English (LOL)....

Common Characteristics of Autism
While understanding of autism has grown tremendously since it was first described by Dr. Leo Kanner in 1943, most of the public, including many professionals in the medical, educational, and vocational fields, are still unaware of how autism affects people and how they can effectively work with individuals with autism. Contrary to popular understanding, many children and adults with autism may make eye contact, show affection, smile and laugh, and demonstrate a variety of other emotions, although in varying degrees. Like other children, they respond to their environment in both positive and negative ways.

Autism is a spectrum disorder. The symptoms and characteristics of autism can present themselves in a wide variety of combinations, from mild to severe. Although autism is defined by a certain set of behaviors, children and adults can exhibit any combination of the behaviors in any degree of severity. Two children, both with the same diagnosis, can act very differently from one another and have varying skills.

Parents may hear different terms used to describe children within this spectrum, such as autistic-like, autistic tendencies, autism spectrum, high-functioning or low-functioning autism, more-abled or less-abled. More important than the term used is to understand that, whatever the diagnosis, children with autism can learn and function productively and show gains with appropriate education and treatment.

Every person with autism is an individual, and like all individuals, has a unique personality and combination of characteristics. Some individuals mildly affected may exhibit only slight delays in language and greater challenges with social interactions. The person may have difficulty initiating and/or maintaining a conversation. Communication is often described as talking at others (for example, monologue on a favorite subject that continues despite attempts by others to interject comments).

People with autism process and respond to information in unique ways. In some cases, aggressive and/or self-injurious behavior may be present. Persons with autism may also exhibit some of the following traits.

Insistence on sameness; resistance to change
Difficulty in expressing needs; uses gestures or pointing instead of words
Repeating words or phrases in place of normal, responsive language
Laughing, crying, showing distress for reasons not apparent to others
Prefers to be alone; aloof manner
Tantrums
Difficulty in mixing with others
May not want to cuddle or be cuddled
Little or no eye contact
Unresponsive to normal teaching methods
Sustained odd play
Spins objects
Inappropriate attachments to objects
Apparent over-sensitivity or under-sensitivity to pain
No real fears of danger
Noticeable physical over-activity or extreme under-activity
Uneven gross/fine motor skills
Not responsive to verbal cues; acts as if deaf although hearing tests in normal range.
For most of us, the integration of our senses helps us to understand what we are experiencing. For example, our senses of touch, smell and taste work together in the experience of eating a ripe peach: the feel of the peach fuzz as we pick it up, its sweet smell as we bring it to our mouth, and the juices running down our face as we take a bite. For children with autism, sensory integration problems are common. Their senses may be over-or under-active. The fuzz on the peach may actually be experienced as painful; the smell may make the child gag. Some children with autism are particularly sensitive to sound, finding even the most ordinary daily noises painful. Many professionals feel that some of the typical autism behaviors are actually a result of sensory integration difficulties.

There are many myths and misconceptions about autism. Contrary to popular belief, many autistic children do make eye contact; it just may be less or different from a non-autistic child. Many children with autism can develop good functional language and others can develop some type of communication skills, such as sign language or use of pictures. Children do not "outgrow" autism but symptoms may lessen as the child develops and receives treatment.

One of the most devastating myths about autistic children is that they cannot show affection. While sensory stimulation is processed differently in some children with autism, they can and do give affection.

just a little diagnostic criteria...

Some Diagnostic criteria for Asperger's Syndrome


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A couple of people have asked me about Aperger's as well as autism, wondering about a check-list, etc. Here is some pretty good information for Asperger's. I am looking for something equally succinct for autism.


This is an explanation of the diagnostic criteria for AS:


Diagnostic Criteria:

A. Qualitative impairment in social interaction, as manifested by at least two of the following:

- Marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
- Failure to develop peer relationships appropriate to developmental level
- 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)
- Lack of social or emotional reciprocity [i.e. apparent lack of empathy, comforting/complimenting others, lack of and lack of understanding of the principles of sharing/turn-taking, lack of conversation skills, often one-sided conversations that are practically monologues]

B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:

- Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
- Apparently inflexible adherence to specific, nonfunctional routines or rituals
- Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
- Persistent preoccupation with parts of objects
C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning

D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years)

E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than social interaction), and curiosity about the environment in childhood

[Added: Delay in acquisition of motor skills is fairly common though, as well as clumsiness and "odd"/slow use of hands/fingers]

F. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia


The language/speech criteria are better addressed on Gillberg & Gillberg's AS rating scale, which I personally find more in-depth and accurate:

1. Social impairment – extreme egocentricity (at least in two of the following):
- Inability to interact with peers
- Lack of desire to interact with peers
- Lack of appreciation of social cues
- Socially and emotionally inappropriate behaviour.

2. Narrow interest (at least one of the following):
- Exclusion of other activities
- Repetitive adherence
- More rote than meaning.

3. Repetitive routines (at least one of the following):
- On self, on aspects of life
- On others.

4. Speech and language peculiarities (at least three of the following):
- Delayed development [Although this is usually more the case with HFA]
- Superficially perfect expressive language
- Formal pedantic language
- Odd prosody, peculiar voice characteristics
- Impairment of comprehension, including misinterpretations of literal / implied meanings.

5. Non-verbal communication problems (at least one of the following):
- Limited use of gestures
- Clumsy body language
- Limited facial expression
- Inappropriate expression
- Peculiar stiff gaze.

7. Motor clumsiness [movement skills]
- Poor performance on neuro-developmental examination.

found a letter explaining autism

I found this online and it made me tear up, it is so perfect. I am thinking about sending it out to my family. I think it explains things pretty well to people who don't deal with a kid on the spectrum every day. It applies to holidays, butreally it is true of any occasion when people gather together and there is a lot of hubbub. Please tell me what ya'll think.
Thanks!


Dear Family and Friends:

I understand that we will be visiting each other for the holidays this year!
Sometimes these visits can be very hard for me, but here is some information
that might help our visit to be more successful. As you probably know, I am
challenged by a hidden disability called Autism, or what some people refer to
as a Pervasive Developmental Disorder (PDD). Autism/PDD is a
neurodevelopmental disorder which makes it hard for me to understand the
environment around me. I have barriers in my brain that you can't see, but
which make it difficult for me to adapt to my surroundings. Sometimes I may
seem rude and abrupt, but it is only because I have to try so hard to
understand people and at the same time, make myself understood.

People with autism have different abilities: Some may not speak, some write
beautiful poetry. Others are whizzes in math (Albert Einstein was thought to
be autistic), or may have difficulty making friends. We are all different and
need various degrees of support.

Sometimes when I am touched unexpectedly, it might feel painful and make me
want to run away. I get easily frustrated, too. Being with lots of other
people is like standing next to a moving freight train and trying to decide
how and when to jump aboard. I feel frightened and confused a lot of the
time. This is why I need to have things the same as much as possible. Once I
learn how things happen, I can get by OK. But if something, anything,
changes, then I have to relearn the situation all over again! It is very
hard.

When you try to talk to me, I often can't understand what you say because
there is a lot of distraction around. I have to concentrate very hard to
hear and understand one thing at a time. You might think I am ignoring
you--I am not. Rather, I am hearing everything and not knowing what is most
important to respond to. Holidays are exceptionally hard because there are so
many different people, places, and things going on that are out of my
ordinary realm. This may be fun and adventurous for most people, but for me,
it's very hard work and can be extremely stressful. I often have to get away
from all the commotion to calm down. It would be great if you had a private
place set up to where I could retreat.

If I cannot sit at the meal table, do not think I am misbehaved or that my
parents have no control over me. Sitting in one place for even five minutes
is often impossible for me. I feel so antsy and overwhelmed by all the
smells, sounds, and people--I just have to get up and move about. Please
don't hold up your meal for me--go on without me, and my parents will handle
the situation the best way they know how.

Eating in general is hard for me. If you understand that autism is a
sensory processing disorder, it's no wonder eating is a problem! Think of
all the senses involved with eating. Sight, smell, taste, touch, AND all the
complicated mechanics that are involved. Chewing and swallowing is something
that a lot of people with autism have trouble with. I am not being picky--I
literally cannot eat certain foods as my sensory system and/or oralmotor
coordination are impaired.

Don't be disappointed If Mom hasn't dressed me in starch and bows. It's
because she knows how much stiff and frilly clothes can drive me buggy! I
have to feel comfortable in my clothes or I will just be miserable. When I go
to someone else's house, I may appear bossy and controlling. In a sense, I
am being controlling, because that is how I try to fit into the world around
me (which is so hard to figure out!) Things have to be done in a way I am
familiar with or else I might get confused and frustrated. It doesn't mean
you have to change the way you are doing things--just be patient with me,
and understanding of how I have to cope.

Mom and Dad have no control over how my autism makes me feel inside. People
with autism often have little things that they do to help themselves feel
more comfortable. The grown ups call it "self regulation," or "stimming'. I
might rock, hum, flick my fingers, or any number of different things. I am
not trying to be disruptive or weird. Again, I am doing what I have to do
for my brain to adapt to your world. Sometimes I cannot stop myself from
talking, singing, or doing an activity I enjoy. The grown-ups call this
"perseverating" which is kinda like self regulation or stimming. I do this
only because I have found something to occupy myself that makes me feel
comfortable. Perseverative behaviors are good to a certain degree because
they help me calm down. Please be respectful to my Mom and Dad if they let
me "stim" for awhile as they know me best and what helps to calm me. Remember
that my Mom and Dad have to watch me much more closely than the average
child. This is for my own safety, and preservation of your possessions. It
hurts my parents' feelings to be criticized for being overprotective, or
condemned for not watching me close enough. They are human and have been
given an assignment intended for saints. My parents are good people and need
your support. Holidays are filled with sights, sounds, and smells. The
average household is turned into a busy, frantic, festive place. Remember
that this may be fun for you, but it's very hard work for me to conform. If
I fall apart or act out in a way that you consider socially inappropriate,
please remember that I don't possess the neurological system that is required
to follow some social rules.

I am a unique person--an interesting person. I will find my place at this
Celebration that is comfortable for us all, as long as you'll try to view the
world through my eyes!