Chapter 12: The Concept of Consequences

When you ask people what they believe is the most important lesson that a child can learn, you’ll get lots of different answers. Some people will say that developing a strong work ethic is critical to a person’s long term success. Others will say that empathy and compassion is an essential component in the development of a person’s of character. As the father of a child with severe autism, I’ve come to a much different realization. A strong work ethic can serve you well however in the absence of other important qualities, it can be a shallow and divisive trait. Compassion and empathy are critical to any well rounded human being. However, without the ability to think critically, compassion can become an irrational, self- serving broadcast, whose emotional presentation does little to resolve any true conflict.
Over the past few years, I’ve come to the realization that the most important thing a young person can learn is the concept of consequences; a basic understanding of cause and effect. Work ethic, love, empathy, self-reliance; all of these concepts are a distant second to understanding the nature of consequences. It goes to the very core of our survival; “If you play with fire, you may get burned”, “if you walk in the street, you may get hit by a car and be seriously injured or worse”. This is critical information that could literally mean the difference between life and death for you and those around you. This is also one of the most alarming things about young people with developmental disabilities. They can be completely oblivious to the consequences of their actions. This really tends to throw the rest of us off to the Nth degree.
When you look at literature about autism, often times people describe children with severe autism as being “fearless”, of having no concerns for their own safety. To the layman, that may appear to be true but to a seasoned parent, the “fearless” label is more myth than fact. It is not so much that they have no fear, it is more that they are not able to calculate, estimate, guess or assess what will happen as a result of what they are about to do.

We think it’s very simple: If you : A- Run on the Freeway….Than you might: B- Get hit by a car…..Which may lead to: C- Death.,... A + B = C, easy as pie right? No, not exactly.
This is what really throws us adults for a loop. How can a person not be afraid of these obvious dangers? Well, I can tell you that fear has very little to do with this problem. There is a difference between being fearless and not understanding what could happen as a result of one’s actions. The ability to process abstract information can be an issue for some people with autism. I know with our daughter, she appears to learn some things through “trial and error” with sometimes unpleasant experiences.

How do I know the difference? How can I be sure that it is my daughter’s inability to recognize potentially hazardous “stunts” rather than the supposed “ lack of fear” demonstrated by many children on the autism spectrum? Simple, my daughter had practically no “fear” of heights when she was young. She would climb anything and everything stationary. She had no perception or idea of how a person could be injured from high falls. However, my daughter has always had a very healthy fear of other things like birds, dogs and other animals. It doesn’t take a clinician to recognize the difference. She can see the animals and spiders and she can anticipate an unpleasant interaction. Her fear is a natural fear of the unknown and of a situation she can’t control.

On the other hand, jumping from high places and/or objects is perfectly controllable, at least from Dani’s perspective. She controls how high she climbs, she controls when to let go and where to make her “landing”; easy as pie, right? One bad landing and her fear of height is completely gone. Can you say that she really was fearless prior to her fall? No.

People who are fearless usually will get back up and try again when they are able; after all, they have No Fear. You see that all the time in professional athletes and stunt persons who can be critically injured in the act of doing what they love to do. Remember the opening to ABC’s Wide World of Sports back in the ‘70’s; “the Thrill of Victory and the Agony of Defeat”? That same skier that went flipping and tumbling through the air and landed in a crumpled heap, got up and competed again the next week. That’s fearlessness.

The fall Danielle experienced changed her perception of heights. She knows what could happen, how she could be hurt. She understands the “Consequences” of her actions in regards to climbing and jumping from tall objects. Danielle was never “fearless” as people like to say. She had no reference point(s) and no concept of what could happen as a result of her jumping or falling.

We should never confuse a lack of experience and knowledge for Bravery or Fearlessness. Let this be a lesson for us all.

Why Is Advocacy Needed?

“Our world is a neighborhood…We are all tied together in the single garment of destiny, caught in an inescapable network of mutuality. And whatever affects one directly affects all indirectly.”.Dr. Martin Luther King, Jr.

For most people, making your own decisions and choices, is a matter of some considerable importance. It is an aspect of personal freedom that most of us take for granted. Having control of our own life is the root from where self-identity is expressed and a major factor in determining quality of life. We all need advocacy at some time in our lives to help us attain this control so that we can have our say. There are many barriers that people face that inhibit their ability to speak up for themselves.

The following are examples of symptoms or conditions that indicate why some people are more likely than others to benefit from the support of an independent advocate:

Impairment (cognitive, psychological, motor, and sensory): people who do not use words to communicate or do not use formal methods of communication or people who are regarded as incapable of making decisions.
ation: those experiencing family breakdown, and dislocation

Here are some examples of some of the more common barriers facing individuals with special needs and extraordinary circumstances.

Emotional Barriers:

1. · Feeling guilty about something that has happened. For example someone who has been abused may think that others will perceive it as their fault, or a young person may feel responsible for the way they have behaved, or parents who cannot manage the care of their disabled son or daughter may feel guilty asking for help.
2. · Feeling ashamed or embarrassed because the issue a person wants help with is very sensitive or personal, such as being involved with the judicial system or having a mental illness that others do not understand.
3. · Knowing that their view will conflict with other people in their lives who are important to them and they do not want to cause upset.
4. · Not having the confidence or lacking the self esteem to do so, perhaps because of lack of previous experience or knowledge, or just being very shy.
5. · Fear of repercussion when perhaps an asylum seeker or refugee are afraid to speak up in case they get deported back to their country of origin, or if a person is unhappy about the care they receive they may be concerned that the care will be withdrawn if they complain.

Physical Barriers:

1. · not being able to use organizations complaint procedures when something is wrong because they are inaccessible or too difficult to understand
2. · effects of medication that can often leave people unable to express what is in their mind or in same cases not able to think clearly
3. · control of other people such as those who provide care or those who are more dominant
4. · lack of access to appropriate and relevant information and not understanding what you are entitled to, or what your rights are, or who to speak to
5. · not being able to communicate in ways that others understand, because the communication is non-verbal or someone is deaf
6. · being unfamiliar with the language and not having access to interpreters.

Staffing Barriers:

1. · staff do not listen to what the people who use their service have to say
2. · staff are uninformed and unresponsive to concerns and issues
3. · the culture of organizations and institutions does not promote or encourage participation from users of their services

Lack of control
For many people, control over everyday life events is commonly taken by others, for example children and young people in children’s homes or in the care of the local authority; older people in hospital; people with a learning disability in residential homes. Often they are placed in a position where the opportunity for independent decision making is unavailable because all decisions are taken by different members of staff. This can represent for them a loss of perceived freedom.

Lack of adequate support:
Because of the barriers we face, most of us rely on informal advocacy and having support from friends and family. Often people who are seen as being in some way “different”, do not get the support they need, because they have been cut off from the wider community, and any of the barriers mentioned can be a reason why they feel ignored or unable to voice their own views. Sometimes when people are at greatest risk of poor treatment and when they most need to have someone on their side, they do not have anyone available.

People can be surrounded by professionals and agencies, but still ‘alone’ or may have fallen out of the system altogether and be isolated from other sources of help. People may often know what it is they want, but have difficulty in making others understand. Sometimes people have just become compliant and have come to expect so little that neither they nor anyone else is articulating their concerns.

Lack of confidence
Disabled people often do not have the confidence to exercise their rights, as a result of a lifetime of experiencing a lack of control over what happens to them. For many the high levels of support received from their families and service systems, has encouraged them to become passive recipients of care. Day to day choices about what clothes to wear, or what food to eat, may routinely be taken by the carers. Commenting on, or complaining about the support they receive, may be particularly difficult because of the reliance on the same people, and a fear that those services may be withdrawn.

There remains a negative image of disabled people, often being seen as a “burden” on society, or “fit persons for care”. Public suspicion and fear of those labelled as being ‘mentally ill’ or having a learning disability is commonplace. It is perhaps understandable then that these prevailing attitudes result in low expectations, segregation, and a lack of opportunity and experience for many.

Lack of knowledge
Our society has made great progress over the past twenty years in the form of legislation and in our attempts to facilitate access for people with disabilities. Along with this progress comes a plethora of details, regulations, restrictions and rules. Technological advances and new ways of desiminating information have helped some but for others, access to information is still a serious concern. Individuals with cognitive disabilities, senior citizens, children and those with low incomes are often “off the grid” and unable to access information, resources and services. For many, process of finding proper and affordable services and information is daunting if not impossible.

In any of these situations, more formal advocacy support can make a real difference to the lives of people facing a variety of personal challenges. Though not previously mentioned, the labor movement of the early 20th century faced many of the same challenges; Lack of control, lack of support, lack of knowledge and the inability to have their perspective heard. Many of the concerns regarding the emotional, physical and staffing barriers previously mentioned in regards to the disabled were shared by american factory workers at the turn of the century. Today, most of our major labor unions share common roots, perspectives and values with civil and diability rights advocates.

What is Advocacy?

“Remember the people you represent and what you are fighting for.”..Dr. Martin Luther King, Jr.

Advocacy is about helping a person to be heard. Most people can act as advocates and use advocacy daily, for example parents listen to the needs and wishes of their children; managers respond to the views of their staff; friends stand by each other and offer support. This is often referred to as “informal” advocacy and is a part of everyday life.

Sometimes more formal methods of advocacy are required and this is often referred to as Independent advocacy. Advocacy is a tool that can be used in a variety of ways to ensure that minority and disadvantaged groups in society have a means to know about, and gain, the same life opportunities as others.

Advocacy aims to achieve a more equal and just society. There are many people in our society who are ignored because they have difficulty in gaining the attention that is needed to make sure their views and opinions are listened to and acted upon. This leads to them being marginalized, often socially excluded; isolated.

Advocacy offers support for people who are seeking resolutions to any issues that are of concern to them, by ensuring that their voice is heard and that they understand their civil and human rights. Advocacy is closely linked to the principles of Human Rights, disability discrimination, equality of opportunities and the social model of disability.

An advocate is a means to redressing the balance of power by providing a mixture of:

· Support

· Signposting

· Links to other services

· Sharing information and knowledge to support decision making

· Being a ‘voice’ to ensure that people’s rights are respected.

Advocacy offers an effective means to:

· Express choice

· Develop the confidence to express satisfaction or dissatisfaction

· Receive information

· Minimize risk

· Offer control to avoid isolation

· Provide strength to attain empowerment

Advocacy is guided by the principle that every person should be valued, and ensures that people are not ignored and excluded because of the prejudices they face, that lead to lack of respect from others. Advocacy promotes a person centered approach in everything it aims to achieve and is based on the belief that everyone has the right to:

· Be respected and listened to

· Be involved in decisions that affect their lives

  Have aspirations for their future

PREVALENCE STUDIES

This is not an easy read, nor is it a fun read. However, if you are looking for statistics on the growth of autism in various countries it has a wealth of information. Great for grant writers...Once again, I can't recall where I came across this information but perhaps it will come in handy for someone.

Past Prevalence Studies of Autism
There have been numerous studies conducted in separate countries to determine how many children had autism spectrum disorders over the past 40 years.
Many of the studies found a substantial proportion of children had a physical condition such as maternal rubella, prenatal trauma, encephalitis, epilepsy or tuberous sclerosis which were all potential explanations for the autism disorders. Most of today's children with autism were born healthy and suffered no injury or illness that could be a possible explanation.

Different diagnostic criteria were used in the studies. Those used were:
Kanner's Criteria:

1) A profound lack of affective contact
2) Repetitive, ritualistic behavior which must be of an elaborate kind
*Kanner gave some examples of behavior and did not include age of onset as essential. Kanner's Criteria for diagnosis is the most restrictive criteria used. It mainly focuses on the most severe forms of autism and does not allow for milder cases of autism found in Asperger's Syndrome and PDDNOS (Pervasive Developmental Disorder Not Otherwise Specified). Some studies, however, that used Kanner's criteria allowed for "atypical" autism cases to be counted, or those that did not fully fit the picture of Kanner's criteria.

Rutter's Criteria:

1) Impaired social development which has a number of special characteristics out of keeping with the child's intellectual level
2) Delayed and deviant language development that also has certain defined features and is out of keeping with the child's intellectual level
3) "Insistence on sameness" as shown by stereotyped play patterns, abnormal preoccupations or resistance to change
4) Onset before 30 months
*Rutter gave many examples of behavior. Rutter's Criteria for diagnosis is broader than Kanner's and allows for more children to be diagnosed, but whom still fit more typical or classic autism patterns. Milder cases of the Autism Spectrum would still not fit the criteria.

DSM-III Criteria

1) Lack of responsiveness to others
2) Language absence or abnormalities
3) Resistance to change or attachment to objects
4) The absence of schizophrenic features
5) Onset before 30 months

*DSM-III also had categories for childhood onset (after 30 months and before 12 years) and for atypical pervasive developmental disorder (PDD).

*The DSM-III criteria for diagnosis was far broader than any previous criteria. It recognized that autism could occur in any level of severity and now included the symptoms of Asperger's Syndrome, although it did not directly name the disorder. Passive acceptance of social approaches and one-sided approaches were now included as social impairment. The criteria allowed for more milder cases of autism to be counted.

DSM-III Revised criteria:

1) Impairment in reciprocal social interaction (at least 2 from 5 items, comprising of specified clinical examples)
2) Impairment in verbal and nonverbal communication (at least 1 of 6 items)
3) Markedly restricted repertoire of activities and interests (at least 1 of 5 items)
4) A grand total of at least 8 from among the 16 items listed.

*This shift included children with the most subtle symptoms. The DSM-III Revised criteria for diagnosis was the broadest criteria to exist to date. The DSM-III had been revised because many doctors believed the DSM-III was too restrictive and did not allow for children who were clearly autistic to be diagnosed because of varying symptoms and histories. But, many doctors felt that the DSM-III Revised edition was too broad and would include children who did not have autism to fit the criteria. The various subtypes of the spectrum were put into a single category of PDDNOS.

Criteria used in one Japanese study:

1) Disturbed interpersonal relationships (defined by a list of clinical examples comprising of 9 items)
2) Absence or deviance in speech and language development (8 items).
3) Insistence on the preservation of sameness or resistance to change (6 items).
4) Abnormal responses to sensory stimuli or motility disturbance (10 items).

*The criteria used in this one study is a mix of new and old criteria used in other studies. Numbers 2 and 3 are similar to criteria used in other studies, but the broadness of number 1 is different than others and number 4 is the only criteria that included sensory and motor disturbances.

Today's criteria, DSM-IV:

DSM-IV, which is used today, continued the broader conception of the DSM-III, yet attempted to rein back on its DSM-III Revised edition by combining the two, but also restricting the criteria so that it would not catch those who did not have an autistic disorder. It achieved this by improving its specificity as well as separating the subtypes of autism.


Countries and Birth Years

COUNTRY STUDY YEAR BIRTH YEARS AGES PER 10,000 CRITERIA

Denmark 1972 1949 - 1960 2 to 14 4.3 Kanner's

Ireland 1984 1965 - 1968 8 to 10 4.3 similar to DSM-III

Canada 1988 1971 - 1979 6 to 14 10.1 DSM-III Revised

Germany 1986 ? - ? under 15 yrs 1.9 Rutter's

England 1966 1953 - 1955 8 to 10 4.5 Kanner's

England 1979 ? - ? 3 to 17 4.9 Kanner's

England 1970's 1956 - 1970 3 to 17 20 Researcher's Own

England 2001 ? - ? under 18 yrs 62.5 assumed DSM-IV

**Sweden 1983 1960 - 1979 0 to 20 5.6 Rutter's

Sweden 1984 1962 - 1976 4 to 18 4 DSM-III

**Sweden 1983 1964 - 1966 13 to 15 4.6 Rutter's

**Sweden 1983 1970 - 1972 7 to 9 12.6 Rutter's

*Sweden 1986 1975 - 1984 0 to 10 7.5 DSM-III

*Sweden 1991 1975 - 1984 4 to 13 11.5 DSM-III

Sweden 1993 ? - ? school aged 36 Unknown

France 1989 1966 - 1973 6 to 12 6.5 DSM-III

France 1992 1972 - 1976 16 to 20 4.9 France's Own

France 1989 1979 - 1983 5 to 9 10.8 Rutter's

Japan 1971 1968 - 1974 4 to 10 5 Kanner's

Japan 1983 1970 - 1976 6 to 12 16 (high) Japan's Own

Japan 1987 1971 - 1979 4 to 12 15.5 DSM-III

Japan 1988 1972 - 1978 annual age 7 13.8 DSM-III

Japan 1989 1979 - 1984 3 to 5 13 DSM-III

USA 1970 1962 - 1967 3 to 12 3.1 child schizophrenia

USA 1987 ? - ? 2 to 18 3.3 DSM-III

USA 1989 1975 - 1979 8 to 12 4 DSM-III

USA 1998 1988 - 1995 3 to 10 66.7 assumed DSM-IV

USA 2001? 1988 - 1995 3 to 10 68.5 assumed DSM-IV

USA Today's Rate 60.24 DSM-IV


Since it would not be unusual for different countries to have different rates of autism, it is important to evaluate the countries separately. This would be particularly true if an environmental factor is playing a role in causing autism in many cases. It was explained by some of the studies that immigrants from certain areas held higher rates of autism in their studies than native citizens.

In this case, it is important to look at each country separately to evaluate whether or not they themselves had increases in autism rates according to birth years and criteria used.
For some countries, we do not have several studies to compare. But, in others, we do.

In England, they had approximately the same rates using Kanner's criteria. In using their own broad criteria, they found many more they felt fit the picture of autism in some form. The criteria used was extremely broad and specifically searched for children with Asperger's and, still, it did not find as many children as was found in 2001.

In Sweden, it did not seem to matter if they used Rutter's criteria or the DSM-III. Children born before the 1970's held approximately the same rates. Those numbers rose, still using Rutter's criteria, during the 1970's. Those numbers stayed consistent through the 1980's as is shown in the study that continued from when children were too young to be diagnosed to the follow up study done in 1991. In 1993, they checked school-aged children for Asperger's only and found an increased rate.

In France, the only study that did not show as high a rate as when they used their own criteria. The DSM-III rate was even lower than the one using Rutter's, and the Rutter's was used for children born later from 1979 to 1983.

Japan consistently holds the highest rates overall found for autism. But, again, the rates only rise after 1970. This may or may not be interpreted as a criteria change.

The United States was consistently low until after 1988. The first study was highly criticized for only looking at children diagnosed with childhood schizophrenia and using case notes, but it is also noted that the rates found are similar to the other studies. Since the DSM-III was used for many, it is hard to say that the DSM-IV changed the rates that significantly since the DSM-III also included symptoms of Asperger's even if it did not specifically name it.

Year Of Birth By Criteria

Kanner's

COUNTRY STUDY YEAR BIRTH YEAR AGES PER 10,000

Denmark 1972 1949 - 1960 2 to 14 4.3

England 1966 1953 - 1955 8 to 10 4.5

England 1979 ? - ? 3 to 17 4.9

Japan 1971 1968 - 1974 4 to 10 5
Using criteria to evaluate changes in rates, Kanner's criteria does not change much, although it is rising ever so slightly, but the birth years also contain all children born before 1974.

Rutter's

COUNTRY STUDY YEAR BIRTH YEAR AGES PER 10,000

**Sweden 1983 1960 - 1979 0 to 20 5.6

**Sweden 1983 1964 - 1966 13 to 15 4.6

**Sweden 1983 1970 - 1972 7 to 9 12.6

Germany 1986 ? - ? under 15 1.9

France 1989 1979 - 1983 5 to 9 10.8

Using Rutter's criteria, the rates of autism are the same as Kanner's before the 1970's. The rates then change and go higher. The only one that stays low is Germany but we do not have specific birth years to know when these children were born.

DSM-III

*Similar to DSM-III

COUNTRY STUDY YEAR BIRTH YEAR AGES PER 10,000

Sweden 1984 1962 - 1976 4 to 18 4

*Ireland 1984 1965 - 1968 8 to 10 4.3

France 1989 1966 - 1973 6 to 12 6.5

Japan 1987 1971 - 1979 4 to 12 15.5

USA 1987 ? - ? 2 to 18 3.3

Japan 1988 1972 - 1978 annual 7 13.8

USA 1989 1975 - 1979 8 to 12 4

Sweden 1986 1975 - 1984 0 to 10 7.5

Japan 1989 1979 - 1984 3 to 5 13

Using the DSM-III criteria, the rates again stay low for children born before the 1970's. A slight rise is found in France with children who are born in the 1960's and early 70's. After the 1970's, the rates are consistently higher for all but the USA. Sweden's one study is also a bit lower but that is the one that had children too young to be diagnosed and were added in later.

DSM-III Revised

COUNTRY STUDY YEAR BIRTH YEAR AGES PER 10,000

Canada 1988 1971 - 1979 6 to 14 10.1

Sweden 1991 1975 - 1984 4 to 13 11.5

The DSM-III Revised is the broadest criteria ever to be established. Many doctors were concerned that it was so broad that it would capture children who were not autistic at all. Still the rates were similar to others in the 1970's and early 1980's.

Researchers in England, again, used their own criteria that was extremely broad and specifically searched for children who would fit Asperger's descriptions. They had one of the most thorough studies done and found children others had perhaps missed. But, their numbers for those born before 1970 were still far lower than today's rates.

Assumed to be DSM-IV

COUNTRY STUDY YEAR BIRTH YEAR AGES PER 10,000

Sweden 1993 ? - ? school aged 36

USA 1998 1988 - 1995 3 to 10 66.7

USA 2001? 1988 - 1995 3 to 10 68.5

UK 2001 ? - ? under 18 62.5

USA today's rate 60.24
The studies that are assumed to be using the DSM-IV criteria are significantly higher than other studies. However, they also have children that are all born after 1988.


Classic Autism
With the criteria argument looming, the best way to evaluate if autism rates are due to criteria changes or a true rise in cases is by checking classic Kanner's autism. The criteria changes were due to including the other subtypes of autism that some argue may have been missed before. Adding them in now would indicate a change in rates due to their being diagnosed.

However, classic autism has not changed. Classic autism does not include PDDNOS, Asperger's, or any other subtype. It is strictly classic autism as defined by Kanner.

COUNTRY STUDY YEAR BIRTH YEAR TOTAL CASES CLASSIC CRITERIA

Denmark 1972 1949 - 1960 4.3 Kanner's

England 1966 1953 - 1956 4.5 2 Kanner's

Japan 1971 ? - ? 5.02 assume Kanner's

England 1979 ? - ? 4.9 2 Kanner's

England 1970's 1956 - 1970 20 5 Researcher's Own

Sweden 1983 1960 - 1979 5.6 3 Rutter's

USA 1970 1962 - 1967 3.1 0.7 Child Schizophrenia

Sweden 1984 1962 - 1976 4 2 DSM-III

Sweden 1983 1964 - 1966 4.6 Rutter's

Ireland 1984 1965 - 1968 4.3 similar to DSM-III

France 1989 1966 - 1973 6.5 4.7 DSM-III

Japan 1982 1968 - 1974 5 Kanner's

Sweden 1983 1970 - 1972 12.6 Rutter's

Germany 1986 ? - ? 1.9 Rutter's

Japan 1983 1970 - 1976 16(high) Japan's Own

Japan 1987 1971 - 1979 15.5 15.5 DSM-III

Canada 1988 1971 - 1979 10.1 DSM-III Revised

France 1992 1972 - 1976 4.9 4.9 France's Own

Japan 1988 1972 - 1976 13.8 DSM-III

USA 1987 ? - ? 3.3 1.2 DSM-III

*Sweden 1986 1975 - 1984 7.5 4.7 DSM-III

*Sweden 1991 1975 - 1984 11.5 8.4 DSM-III Revised

France 1989 1979 - 1983 10.8 8 Rutter's

Japan 1989 1979 - 1984 13 DSM-III

USA 1989 1975 - 1979 4 DSM-III

USA 1998 1988 - 1995 66.7 40 assumed DSM-IV

USA 2001? 1988 - 1995 68.5 assumed DSM-IV

UK 2001 ? - ? 62.5 16.8 assumed DSM-IV

USA today's rate 60.24

Cases of classic autism do stay consistently low until children are added in that were born in the 1970's, and then we see a slight rise. Japan is the only country that shows a significant increase in classic autism. The USA is the only country that shows a very low number during those years, but it is also noted that we do not know the exact birth years in the study of 1987.

Cases of classic autism also show a that they about doubled again in studies with children born during the 1980's, but the numbers are still lower with the average being around 8 per 10,000.

Cases of classic autism rose by 5 fold for those born after 1988 in the USA and doubled for those in the U.K..

Cases of classic autism do not change according to criteria changes that included milder and higher functioning cases of autism.

Conclusion
From these studies, it is not difficult to see the rising numbers.

The M.I.N.D. Institute in California also concluded that autism is rising and cannot be accounted for by changes in criteria. They are the only researchers keeping an accurate count of all autism cases in their state and they are primarily counting classic autism cases.
The CDC has also confirmed that autism is rising and cannot be accounted for by criteria changes.
After evaluating these studies, we would have to agree.

AutismFACTS to Consider

Interestingly, these prevalence studies give us insight into the most recent studies conducted by the CDC, Denmark, Sweden and England that the IOM relied upon to state that there is no conclusive evidence that autism may be caused by Thimerosal exposure.

While those mentioned studies were not actual prevalence studies, but instead were looking at what effect Thimerosal had on the increasing the numbers of autism, prevalence certainly was a basic part of the studies.

In 1970, Treffert did a study on the prevalence of autism in Wisconsin, USA. He was criticized for only using computer printouts as information for his study. In 1989, Aussilloux used only case notes for his study. In 1992, Fombonne and du Mazaubran used case notes only during their study. Using computer printouts or case notes only are not a preferable method for counting cases of autism, particularly combined with the absence of doing actual interviews and examinations.

All of the above studies used only computer data to count and to evaluate children with diagnosed autism. So did the CDC Thimerosal study and the other three.

Treffert was also criticized because he looked at computer printouts of cases of "childhood schizophrenia" and then attempted to diagnose how many were actually autistic. It is unknown how many cases were actually autism or another type of mental disorder.

The CDC Thimerosal study used children that were diagnosed with other disorders and admit that some were too young to be diagnosed with autism. Further, they only used the first diagnosis a child ever received and discounted any diagnosis that followed. It is unknown how many children were lost from the study who actually had autism.

In 1986, a study done by Steinhausen in West Berlin, Germany was criticized for only using two locations for their information. They used a clinic for child psychiatry and a center providing a program for autistic children. This limited the study substantially by restricting the various locations an autistic child could be found, the number of children studied, and does not allow for random choice which is pivotal for any statistical or population study.Most of the other studies used numerous locations sources such as schools, clinics, and so on.
The CDC Thimerosal study used 2 HMOs and they even limited which clinics the HMOs served in the study, cutting some out that carried high risk numbers. Both HMOs were under the same corporation but in two separate locations. A third HMO added after the initial studies was bankrupt, taken over by the state, and was noted for their incompetent record keeping.

Almost all of the previous prevalence studies searched for children who were diagnosed and undiagnosed in order to get a true record of exactly how many children had an autism spectrum disorder.

The CDC Thimerosal studies only used the actual diagnosed cases for their evaluations and only if they were diagnosed with autism before anything else.

The CDC Thimerosal studies only used the actual diagnosed cases for their evaluations and only if they were diagnosed with autism before anything else.

The various studies done in the past studied children whose average age began at age 5.25 years. The average age for the end of study was 13 years old. The actual ages ranged in each study, from 0 to age 10, but the Swedish studies that began at age 0 followed up to see if each child eventually became diagnosed in later years. They also broke down the other study to show the rate of autism in older children separately.

The CDC study examined the computer data on children from 0 to under 5 years of age. They did follow up but the 0 year olds would still have been under the age of 2 at that point, and they were still only counting the first diagnosis a child received and disregarding any that followed.

Most of these previously conducted studies had a high proportion of children with known possible causes of their autism.

The four studies done by the CDC, Denmark, Sweden and England had no possible explanations for what caused the autism.
While the actual prevalence studies done by the CDC in 1998 showed a prevalence of 66.6 per 10,000, their Thimerosal study produced a prevalence of only less than 1 per 10,000.

“Ability is what you're capable of doing. Motivation determines what you do. Attitude determines how well you do it.” - Lou Holtz

IEP Documentation and Information

I'm not sure where I came across this information but I gathered it sometime over the past 12 months. I'd like to give credit where do but...Here is some good information for caregivers who are preparing for an IEP(s).

IEP Meeting
Before every IEP you must :

1. Send an Email to your SD (1)

2. Send a letter to your SD (2)
II. Pick your battles
Example : Don't fight for services you know will be provided by a quack. Try to get your private insurance, Medi-Cal provider or Regional Center to provide it.

III. Relationships
You don't need to cultivate a good relationships with everybody. You must cultivate a good relationship with the teacher(s) the Aide and service provider(s).
You don't need to be "cute" but always be polite.

IV. IEP Document
Never sign an IEP at the meeting. If you expect to be pressured to sign, ask for a phone conference IEP.

V. Private Assessments
Your private assessment must be done by a person appropriately credentialed, and the document must be very specific re : recommendations about amount or services, where, when , how and by whom.

VI. Complain Loudly & Often
Complaining often and loudly by itself won't get you anywhere. You won't be taken seriously unless you send an Email stating i.e : IEP says that X,Y.Z will be provided and it wasn't. I plan to file a complaint with CDE next week if the situation is not solved immediately.

VII. Assume the Worst
Your SD is a bureaucracy with its own interests to protect. You must learn basic knowledge re : your child’s rights and your responsibilities. Treat the professionals with whom you deal as professionals, not as relatives or friends

VIII. Due Process Hearing
A Due Process hearing is financially, physically and psychologically exhausting and trying. Even if you prevail you'll just get thrown a bone and you will probably have to start again at the next IEP.
A complaint with CDE is cheaper faster and always works.

IX. Specific, accurate and valuable info
You will get specific, accurate and valuable info re : your SD's culture, personnel, schools from parents, especially older parents. Don't hesitate to pick up the phone, meet for a cup of coffee. You will always learn something and never regret it. Always respect confidentiality and never disclose your sources unless authorized.

X. Community
You will do a great service to the community by sharing the info you acquired during your child's school years. Always ensure you gave younger parents a summary of everything you think they should know, and ask them to do the same when they leave their SD.


(1) Phone conference IEPs * are good for the following reasons :
- If you expect to attend multiple IEPs, a phone conference IEP will ease the process.

- The presiding person always calls you when everybody has arrived : no need for you to wait.

- The presiding persons immediately states the agenda for the meeting and proceeds without any delay.

- If you plan to tape record the IEP, you won't have to take time to set recording material and be embarrassed.

- You can read your pre IEP letter (2) as you go, and remember what to say + state your questions/concerns without being intimidated or/and distracted.

- If you wish to take the IEP home for review + signature, you won't have to ask and be pressured to sign it at the meeting.

- A phone conference IEP is always less physically, psychologically and emotionally trying.


*From : http://idea.ed.gov/explore/view/p/,root,dynamic,TopicalBrief,9,
"When conducting IEP Team meetings and placement meetings pursuant to subparts D and E of Part 300, and carrying out administrative matters under section 615 of the IDEA (such as scheduling, exchange of witness lists, and status conferences) , the parent of a child with a disability and a public agency may agree to use alternative means of meeting participation, such as video conferences and conference calls.

[34 CFR 300.328] [20 U.S.C. 1414(f)]"
Sample Email requesting phone conference IEP
... We request the next IEP to be a phone conference IEP. I am available on ( 3 dates/time ). Please state on the IEP notification that the purpose(s) of this meeting is/are:

( list )
The following persons can be excused from attending the IEP meeting :

( list )
We request the following persons to attend the IEP meeting :

( list )
We request the following persons to be invited to the IEP meeting :

( list )
Thank you.

etc...

(2) Sample letter to send before IEP :

How to use it ?
- Send or email or fax or hand deliver etc.... before your IEP. Request confirmation of receipt by email/fax/mail ( not verbal ).

- Edit according to needs/situation ( full inclusion/ partial inclusion/ special Ed class ) etc....

- Edit and/or add appropriate tone ( very nice or assertive or firm etc... )

- Use word "Paraprofessional" and not " One to One Aide "

" (Your name + address+email+ phone #)

Date:

To :

RE:

Dear ............ ......... ......... ......... .....,

Enclosed is a Parent Attachment to the ( mention annual review, Triennial or Transition ) IEP of ( date )

The federal law provides that the IEP team should revise the IEP as appropriate to address information about the child provided to, or by, the parents… 34 C.F.R. 300.343(c) (2)(iii). The law also states that the information that the parents provide regarding their child must be considered in developing and reviewing their child’s IEP. (C.F.R Secs. 300.343(c)(iii) and 300.346(a)(1) (i) and (b)).

The federal law provides that “In developing each child’s IEP, the IEP team shall consider the strengths and concerns the parents have for enhancing the education of their child.”

The IEP team must consider information and concerns about my child that I would like to provide and to have included in the IEP.

Please attach and number this letter, and the enclosed Parent Attachment to the IEP that contains my concerns and requests that I have for enhancing the education of my child.

Thank you.

Sincerely,

( Your signature ) "

Chapter 14: 20th Anniversary of ADA

The world can be very tough on disabled people. Prior to the passing of the initial federal laws designed to provide accessibility and assistance to those in need, disabled people were relegated to second-class citizen status. Title 1 of the Americans With Disabilities Act was passed in 1990 and took effect in July of 1992. Prior to that, disabled people were almost invisible.

Several years ago, before Danielle was born, I was working with a client who was planning a Vietnamese New Years party. My client, Truc Nguyen, was an experienced and well-respected promoter and someone I’d worked with on many occasions. He was planning a party for 5,000 people with a huge stage, catered food, cash bars, screens, projectors, lights, décor; this was a major event. Two weeks prior to show time, Truc stops by my office to discuss a major crisis. He has sold out the event and wants to add another 2500 invitees to the party.

We had a 50,000 square foot room with a 60’ x 40’ stage, a huge dance floor, food stations, approximately 250 staff, TV cameras, LCD projectors etc. It wouldn’t be possible to provide adequate space for an additional 2500 people. Truc asked if we could increase the numbers from 10 people per table to 12. I told him that tables were 60” in diameter and 10 people was the maximum number of people you could comfortably sit at each one. Truc replied, “We can probably sit twelve per table because my people are very small.” After an appropriate pause to suppress the belly laugh that was so close to bursting through my chest, I told my client that we would not be able to add more chairs to the tables. He then asked if we could eliminate the aisles and add 250 additional tables to the room. I informed Truc that not only did his guest need room to move about but the wait staff and technical crews required room to work. I went further and attempted to explain that Federal Law requires that we provide accessibility for people in wheel chairs. The floor plan of this event provided the minimum aisle space required as per the Americans With Disabilities Act. Truc told me that we shouldn’t worry about the ADA laws because in his community, “those people stay at home. They really don’t come to shows like this.” The significance of this statement would not register with me for another 13 years.

Over lunch, the following day, my coworkers and I laughed about my conversation with Truc Nguyen. The absurdity of me trying to explain the Americans With Disabilities Act to someone who did not understand it on a personal level or a cultural level was pretty funny, at the time. His comments and feelings towards the disabled were more odd than offensive. They sort of went in one ear and out the other, or so I thought.

Flash forward to 2005; I’m in the midst of a mid-life crisis. The pressures of home and work are beginning to take its’ toll. I was argumentative with my wife, I was short-tempered with my children and constantly angry with the world. I was diagnosed with depression and began searching for a way to keep myself from losing my “grip.” My problems were compounded b the lack of information and resources available to help us deal with Danielle’s challenges. I started looking any and everywhere for answers to our questions and support for our family. After two years of writing letters and emailing “experts” and parents around the world, the words of Truc Nguyen finally hit home.

What Truc said to me thirteen years earlier, was not meant to belittle the disabled or trivialize their problems. He was simply stating the obvious. The fact is, we do not want disabled people around us. I don’t know if it’s embarassment, guilt, the “inconvenience” factor or perhaps they remind us of how fragile we can be as human beings. Whatever it is, I know our society would rather they not be around. When you look at the way autism is approached and addressed, it becomes amazingly clear. Organizations like the National Institute for Mental Health, the Center for Disease Control and Autism Speaks are hard at work to discover the cause of this disability. There are hundreds of millions of dollars available to research the cause(s) and prevention of autism. There is little or no emphasis on trying to assimilate and teach those who are already living with the disability. I don’t mean to critize the work or contribution of these fine organizations however, as a parent it is hard to see the massive amounts of financial, human and material resources being allocated to prevent more births while there are no efforts being made to assist the kids and families that current struggle for recognition and support.

What Truc said was an honest assessment based upon his view of his community. It is very interesting to look at this from a cultural perspective. In many ancient cultures, children who were born with disabilities were abandoned or killed. We are much to civilized to kill our young, disabled or not; abandonment is a different story and up to interpretation. The one thing that all experts agree upon is that early intervention is a key component to helping our children adapt to their circumstances. If we, as a society, know
this and fail to react accordingly, could this be interpreted as a form of abandonment?

The realization that my girls will face challenges because of their ethnic heritage and gender are sobering to say the least. My baby is an African American girl who happens to have a disability. What happens when I’m not here to care for her? What about those things she needs to know about the world but may not be able to grasp? Can I do anything more to provide her with the necessary tools to make it in our world? These are questions that may take years to answer. I hope that my search will provide these answers, not just for Danielle and me but for other Dads who share my concerns for their little girl’s future.

Chapter 9: Raising Girls of Color

The world can be very tough on women. Unequal pay in the business world, lack of opportunities, prejudices, stereotypes and extremely high divorce rates are typical problems that women face in our society. We live in the greatest country in the world. Yet, in many ways, we are behind the times when it comes to recognizing what others already know. How is it that in 2008, we were still conducting straw polls to see if we are “ready” for a female President? Heck, even Pakistan had a female Priminister. We think much of ourselves and we frown upon those who we consider to be less “progressive” and “enlightened” then us. The fact is, as a nation, we are blissfully ignorant of the world outside our borders, we are egocentric to the point that we believe everyone wants to be like us and we are self centered enough to believe that our transgressions are less harmful than those committed by others.

At some point we must acknowledge the obvious; in order to lead, you must care about and for those who you are supposed to lead. That’s true at any level. If you are the leader of your neighborhood watch association, your local girls scout troupe, your family, your House of Representatives or your nation; it’s all the same principle. You can’t effectively lead a family nor can you lead a nation if you only care for those who agree with you. If you look at leadership from that perspective, the answer is an emphatic YES! We are ready for a female president, and African American President, a Mormon President or anyone who cares about the men, women and children of this country.

The world can be very tough on African American women. In addition to the struggles that all women in our society face, African American women carry the additional burden of the intra-cultural struggles we face as a community. The lack of opportunities in business, unequal pay, high divorce rates are challenges that all women face. However, the history of African Americans in our country has damaged and retarded our family structure in ways that we have yet to acknowledge or properly address as a community.

As an African American man living in California, I find the lack of historical knowledge amongst young men to be really disturbing. My father was a career military man. As a child, we moved around quite a bit. We lived in Hawaii, Washington, Florida, Louisiana and California. Frequent moving and changing of environments gave me a unique perspective on the things. Black people who live in the South have an entirely different view of the world. My mom was born in 1940’s Tennessee and my dad was born in Louisiana in the 1930’s. Segregation was not a choice; it was a way of life. In the Southern United States, it permeated all aspects of society. Politics, religion, education and recreation were all subject to the rules and edict of Jim Crowe Laws. African Americans who were born and raised in California had a different experience.

Whenever I’ve said this to black people who are “native” Californians, they get really upset. But the fact is, the Black Panther Party was formed in the Bay Area. This place was and is a liberal hot bed. You couldn’t have gone to Biloxi Mississippi and organized the Black Panther Party in the 1960’s. In Alabama, Mississippi, Georgia and other Southern States, the civil rights movement just happened and in many ways is still happening. As late as 2001, the U.S. government was still prosecuting Klansmen for Civil Rights Violations in the 1960’s. (By the way, Civil Rights Violations is code for the murder of men women and children…) Many of the people who marched and actively participated in the movement still live in the small towns and rural areas.

I’ve met blacks that have told me that they’ve never experienced any form of prejudice in their lives and I’ve met blacks that say they’ve been discriminated against everyday of their lives. In every case, these were “native” Californians.

What really disturbs me about the lack of knowledge in our community is the way that it manifests itself amongst our younger generation. It appears as though we are not talking to our kids about our place in this society. How we got to this point and how we are to progress as a culture is a lesson that we must teach our children. Recently, I was watching a talk show and they had a panel of men from different ethnic backgrounds talking about women. The African American men both made similar comments about African American women. One man said he preferred not to date African American women because they are pushy, difficult, bossy, critical of men and selective.

He felt that women of other ethnic backgrounds were much easier to get along with and came with less baggage. This statement is not something new. It is a long-standing stereotype that labels African American women as bossy, over-bearing and demanding. The one thing that makes stereotypes so painful is the fact that you can find an example of or perhaps a bit of truth in many of them.

The truth be said, it’s all about perspective. Are African American women bossy? I prefer to call it assertive. Are African American women over-bearing? I prefer to call it strong. Are they demanding and difficult to get along with? No, no more than anyone else.

Obviously, I have some explaining to do. Historically, African American women have assumed the role of head of household on a much more frequent basis than women of other cultures. This goes back hundreds of years ago when we were first brought to this country. Black family members were considered property and subject to barter, sale or trade. Therefore, many families were divided and separated. There were many other problems that contributed to the instability of the Black family. This included the short life expectancy of male slaves during the 17th through 19 centuries. Often times, women would be the one stabilizing presence in a family.

At the turn of the century, as the U.S. was entering the industrial revolution, Blacks that were the sons and daughters of slaves had few skills other than agricultural and manual labor. What few opportunities did exist for Black men rarely paid enough to support a family. African American mothers had to work and hustle to help make ends meet. It’s often said that our society changed during World War II because women had to join the workforce to aid the war effort. That may be true for our society in general, but not in the Black community. Our women have always had to work to provide for the family.

Historically, the incarceration of Black men has always been disproportionately high in this country; greatly contributing to the problem of single parenting in our community. The added fact that the life expectancy for young Black men is frighteningly low means that young Black moms are raising kids alone. In inner Cities, it is not uncommon to find two or three generations of Black women living together without an adult male around. Their male children grow up without a father and consider single moms the “norm”. There’s no male to model behavior from so they pick up their clues from the neighborhood crowd, RAP videos and video games.

Are Black women assertive, focused and sometimes uncompromising? Yes, wouldn’t you be? Many times, they end up being mother and father in a world that is equally uncompromising. I understand where they’re coming from. (Especially since I have daughters now!)

You’re probably thinking, “Why can't you get beyond this?” It’s all part of the thinking process. You can't ignore these things and think things will work themselves out.If you are a man raising a girl in our society, especially a girl of color, it would be wise to look at our history. You can’t protect your little girl from everything, but you can prepare her for things you know she will have to face. It’s the responsible thing to do as a father.

A friend of mine told me that I tend to concern myself with things that really are “non-issues”; of course, he’s got sons. I asked him, “If these things are non-issues, then why are we doing straw polls to see if we are ready for female leadership?”

Chapter 13: Public School Misconceptions

When it comes to treatment for developmentally disabled children, parents and doctors are usually on the same page. Whenever a parent asked a doctor for his/her prognosis, they are talking about long term, quality of life standards. Doctors approach these issues from the same perspective as parents. That is why they prescribe extensive OT and Speech Therapy for young children. They are trying to insure that children have the best possible chance at becoming independent and productive adults through intensive early intervention.
However the “treatment” prescribed by the doctors are usually not administered by doctors or clinicians. They are usually left up to our public schools to administer; that’s when the problems arise. It’s not necessarily the fault of our public schools alone. We, parents and the general public, have some major misconceptions about what our public schools actually do.

From the time I was a kid, I was always told that schools are here to educate. That’s true in theory however what they actually do is far different. In reality, our public schools provide assistance, opportunities and tools for an education. If your child is interested, engaged and motivated, he/she can receive a good education. For the rest of the population, public schools are all about matriculation. They talk about it all the time but I think it goes in one ear and out the other for many parents. How many times have you heard administrators and teachers talk about the “Basic Minimum Requirements”? Basic Minimum Requirements is “not-so code” for Matriculation. If your child’s Basic Minimum Requirement is to chew gum and walk a straight line, he/she will be promoted to the next level…matriculated through the system.

Here lies the rub; parents approach the schools looking for services they think the school should provide. They are under the misconception that the school is there to help their child achieve some level of independence. They believe that the school will educate their child and that is not reality, especially when it comes to children with development disabilities. To public school administrators, the learning plans developed by parents and doctors are a “wish list” and nothing more. Minimum standards for advancement are the priority and how your child adapts to the world after public school is not their concern. This is not to put a bad-rap on public schools. They have extremely limited resources in an ever-changing and demanding world.

I was talking with a friend of mine who has two children that attend a private middle school in the Silicon Valley. The tuition for both girls is about $29,000.00 per year. However, the tuition alone is not enough to get your kid(s) in the door. In addition to his monthly checks to the school, he and his wife must sign up for school service hours to support the children and staff. The parents sign up to work as chaperones, tutors, work with campus organizations, coordinate fundraisers, etc…What private schools recognize is that education doesn’t just happen with school staff. The participation of the parents, their engagement and support of their kid’s school activities enhance the educational experience. It also brings much need resources to campus. (Though how much more resources do you need when you charge $14,500.00 per student?)

The bottom line is that parents are the best advocates for children. It’s really hard to make ends meet and still take an active roll in your child’s education. I know this from personal experience. But, there really is no other way to insure your child will get the quality education that he/she deserves. You can’t leave it all up to the public schools.

What Is Autism?

Autism is a complex developmental disability that typically appears during the first two years of life and is the result of a neurological disorder that affects the functioning of the brain, impacting development in the areas of social interaction and communication skills. Both children and adults on the autism spectrum typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities.


Autism is one of five disorders that fall under the umbrella of Pervasive Developmental Disorders (PDD), a category of neurological disorders characterized by “severe and pervasive impairment in several areas of development.”

Prevalence

Autism is the most common of the Pervasive Developmental Disorders, affecting an estimated 1 in 100 births (Centers for Disease Control Prevention, 2007). Roughly translated, this means as many as 1.5 million Americans today are believed to have some form of autism. And this number is on the rise.

Based on statistics from the U.S. Department of Education and other governmental agencies, autism is growing at a startling rate of 10-17 percent per year. At this rate, the Autism Society estimates that the prevalence of autism could reach 4 million Americans in the next decade.

Autism knows no racial, ethnic, or social boundaries; family income levels; lifestyle choices; or educational levels, and can affect any family and any child.

And although the overall incidence of autism is consistent around the globe, it is four times more prevalent in boys than in girls.
Source: Autism Society of America Web Page



Facts and Stats

• 1 percent of the population of children in the U.S. ages 3-17 have an autism spectrum disorder.1

• Prevalence is estimated at 1 in 110 births.2

• 1 to 1.5 million Americans live with an autism spectrum disorder.3

• Fastest-growing developmental disability; 1,148% growth rate.4

• 10 - 17 % annual growth.5

• $60 billion annual cost.6

• 60% of costs are in adult services.7

• Cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention.8

• In 10 years, the annual cost will be $200-400 billion.9

• 1 percent of the adult population of the United Kingdom have an autism spectrum disorder.10

• The cost of autism over the lifespan is 3.2 million dollars per person.11

2003, 2006 Copyright the Autism Society. All rights reserved.

1. Pediatrics, October 5, 2009, based on a National Children’s Health Survey done with 78,000 parents in 2007.

2. "Prevalence of Autism Spectrum Disorders - Autism and Developmental Disabilities Monitoring Network, United States, 2006." Department of Health and Human Services, Centers for Disease Control and Prevention. Morbitity and Mortality Weekly Report, 18 December 2009.

3. Based on the autism prevalence rate of 1 in 150 (Centers for Disease Control and Prevention, 2007) and 2000 U.S. Census figure of 280 million Americans.

4. “Autistic Spectrum Disorders: Changes in the California Caseload, An Update June 1987 June 20007.” Cavagnaro, Andre T., California Health and Human Services Agency. State of California 2003 survey of developmental disabilities.

5. Autism Society estimate based on 2003 US state educational data.

6. Autism Society estimates based on UK study by Jarbrink K, Knapp M, 2001, London School of Economics: "The economic impact on autism in Britain," 5 (1): 7-22.

7. Autism Society estimate.

8. Autism Society estimate, using Government Accounting Office Report on Autism 2007.

9. Autism Society estimate.

10. Autism Spectrum Disorders in adults living in households throughout England," Report from the Adult Psychiatric Morbidity Survey 2007, a survey carried out for the United Kingdom NHS Information Centre for health and social care.

11. Arch Pediatric Adolesc Med. 2007;161:343-349.


There is no known single cause for autism, but it is generally accepted that it is caused by abnormalities in brain structure or function. Brain scans show differences in the shape and structure of the brain in children with autism versus neuro-typical children. Researchers are investigating a number of theories, including the link between heredity, genetics and medical problems. In many families, there appears to be a pattern of autism or related disabilities, further supporting a genetic basis to the disorder. While no one gene has been identified as causing autism, researchers are searching for irregular segments of genetic code that children with autism may have inherited. It also appears that some children are born with a susceptibility to autism, but researchers have not yet identified a single "trigger" that causes autism to develop.

Other researchers are investigating the possibility that under certain conditions, a cluster of unstable genes may interfere with brain development, resulting in autism. Still other researchers are investigating problems during pregnancy or delivery as well as environmental factors, such as viral infections, metabolic imbalances, and exposure to environmental chemicals.

Genetic Vulnerability

Autism tends to occur more frequently than expected among individuals who have certain medical conditions, including Fragile X syndrome, tuberous sclerosis, congenital rubella syndrome, and untreated phenylketonuria (PKU). Some harmful substances ingested during pregnancy also have been associated with an increased risk of autism. Read more about related conditions.

Environmental Factors

Research indicates that other factors besides the genetic component are contributing to the rise in increasing occurrences of ASD, such as environmental toxins (e.g., heavy metals such as mercury), which are more prevalent in our current environment than in the past. Those with ASD (or those who are at risk) may be especially vulnerable, as their ability to metabolize and detoxify these exposures can be compromised. Read more about environmental health and autism.

(Last updated: 25 January 2008)

There are no medical tests for diagnosing autism. An accurate diagnosis must be based on observation of the individual's communication, behavior and developmental levels. However, because many of the behaviors associated with autism are shared by other disorders, various medical tests may be ordered to rule out or identify other possible causes of the symptoms being exhibited. At first glance, some persons with autism may appear to have mental retardation, a behavior disorder, problems with hearing, or even odd and eccentric behavior. To complicate matters further, these conditions can co-occur with autism. However, it is important to distinguish autism from other conditions, since an accurate diagnosis and early identification can provide the basis for building an appropriate and effective educational and treatment program.

A brief observation in a single setting cannot present a true picture of an individual's abilities and behaviors. Parental (and other caregivers' and/or teachers’) input and developmental history are important components of making an accurate diagnosis.

Chapter 16: The Autism Business

The first two years following Danielle’s diagnosis, I found myself attending every conference that I could possibly find. I was looking for anything that would help us, help our baby girl. Unfortunately, I found lots of things; too many things. I found therapies that I couldn’t afford and my insurance wouldn’t cover; therapies that may or may not help my daughter’s condition. After the first five or six conferences, the anger began to set in.
I became bitter and cynical about “The Autism Business.” I was amazed at the number of moneymaking opportunities that this disability presents. There is the speaker circuit, conferences, nonpublic schools, research and the proverbial treatment of the month. What was amazing is that few of these things seemed result in direct services to families in need. I’ve attended many conferences that feature experts in the field of autism. After listening to their presentations, you realize what you’ve just heard is a one hour informercial about their new “product”. You’ve just paid $200.00 for this live informercial and for an additional $150.00 per hour, your child can benefit from the latest, research backed autism treatment. Of course, many of these experts will not mention the fact that their success is based upon an extensive screening of the participants involved in their programs. The deck is often stacked in their favor. Some of these professionals will “observe” a child for an hour and write an extensive assessment of the child’s abilities and needs. They do this enough times, package it, join the circuit and sell it. Sometimes I can’t help but question their practical experience. Sounds cynical? Well it is cynical and somewhat unfair.

Learning to deal with having a child with a disability is a process. I don’t know that everyone experiences the same emotions or reacts in the same way. With me, the process began with an unquenchable desire for knowledge and information. I went from looking for answers and support to cynicism and anger at the myriad theories and methods being marketed for our children and families. When you talk about children on the autism spectrum, their abilities, the challenges they’ll face and their future prognosis is so individualized that it is impossible to offer a single “solution” to the problem. Parents will make use of multiple programs, tactics and strategies in an attempt to find what works for their particular child. It took a while for me to work through the anger and frustration. It took a while for me to recognize the obvious; that same individuality that makes future prognosis so difficult is the catalyst for the myriad therapies and treatments designed to address the needs of our children. Just because a particular therapy doesn’t work for my child, doesn’t mean it won’t work for the next child. It has taken a while, but I understand and appreciate the work of all the various clinicians and specialist.

When it comes to autism spectrum disorders, the password is “research”. Research is a double edge sword for me. As a parent, I pray that others don’t have to deal with the heartbreak of finding out that their baby has autism. From that perspective, I understand the need for research. But, it’s difficult for me to hear about it. I don’t want to hear that hundreds of millions of dollars are raised for the prevention of autism. The genetic causes of autism are of little concern to a father who is trying to help his child find her place in the world. It is especially disturbing when I see there are no coordinated efforts to help the millions who currently live with this disability assimilate into our society.

Of course, that’s a parent’s perspective but it is also the perspective of a realist. It is the perspective of the parent of a child who has autism, but also the perspective of a person who recognizes the challenges that await the next generation. The impending retirement of 77 million Baby-Boomers, the astronomical increase in autism rates over the past ten years, the outsourcing of jobs to other countries is an ever-growing economic and social disaster. At some point, we’ve got to decide what we are going to do as a society. If we are not going to educate these children, if we are not going to try and assimilate them into our communities, then we need to start developing a plan to care for the millions of young people that will need long-term assistance. Can Social Security support the seventy-seven million retiring Baby-Boomers and the huge numbers of young adults that will come of age during the next five to ten years?

The business of autism is as competitive as any other business. The wide-open nature of this new and ever-expanding field of business poses the biggest challenge to parents as “consumers”. There are all kinds of treatments, educational methodologies, diets and programs available for sale to the public. There is gluten free diets, Interactive Metronome Therapy, low oxalate diets, the list go on and on. It is very difficult to sort through what’s truly affective and what has merit for your child. As a parent, you are constantly chasing the miracle cure. That is one of the many drawbacks of the Internet; too much information, “Stuff” flyin’ all over, unedited, unsubstantiated and all for free of charge.

Many of these programs and treatments are touted as well researched and proven effective. As I said before, there is no single treatment or program that works for all people. Changes in diet help some but have no effect on others; ABA works well with some children but others respond better to a less structured environment, it all depends upon the individual and his/her needs. This is all fine when you’re talking about individual families who are trying to find a way to address their personal needs and the needs of their child. Unfortunately, the list of “consumers” consist of more than just parents looking for solutions for their families. What happens when the consumer is looking for a program to address the needs of many? What happens when a school district enters into an agreement with an organization that subscribes to a specific treatment methodology that is not appropriate for all special needs students? What happens to the children that don’t survive the screening processes?

You’d hope that these organizations would refer these children who didn’t fit their criteria to another service provider; but that doesn’t happen. From a business perspective, why would they refer a client to another service provider/competitor that has a resource or ability that they lack? It would be bad for business. So the children who don’t qualify for the services that their school district has contracted for are out of luck; they have to rely on whatever “other services” the district can muster. This competitive business atmosphere amongst service providers exists to the detriment of our children and our schools. But, how do you change the nature of business practices? After all, providing services to this segment of our society is a business like any other. However, unlike other businesses, the client base is growing exponentially with no end in sight.

Autism is a disability whose pattern of emergence in conjunction with our increased access to the information has created a wide open market of services and treatments for parents to pursue. In reality, there is nothing wrong or sinister about competition. It’s just the way we do things; you can’t give credit to any other “product” or treatment when you are trying to promote your own. That’s basic business sense; ever heard of “the crab in a barrel syndrome?” It’s territorial, it’s elitism, it’s self-preservation, self-validation and let us not forget, it’s money. In some cases, it can be really big money. The field has a lot of unknowns, parents are desperate for help, schools are looking for relief and support; the time is right for money to be made. This is not the attitude of the majority but it clearly exists, I’ve seen it and so have many others. This is the time to be diligent and cautious in our attempts to find solutions to this growing problem.

It doesn’t make sense to complain that someone who has put a lot of time and effort into studying a particular methodology is making a living from the sale of that information. That’s not what I’m saying at all. I am just expressing my frustration that the “disconnect” is so prevalent. I would like to go to a seminar and have a presenter say, “I believe that my treatment will revolutionize the way we teach communications in our schools. However, it has not been 100% successful in our clinical trials so for those who need other assistance you can try …” I know that sounds ridiculous, after all what business would promote a competitor, right? But, what are they competing for? It’s not as though there is a shortage of clients. That’s our major problem; there are more clients than any of these entities can handle.

The Autism Business is driven by desperation, lack of knowledge and lack of resources. This is further fueled by the fact the professionals, clinicians and doctors, don’t understand how to educate the masses. Prior to 2004, many conferences and seminars didn’t seem to be geared towards parents and those who spend the most quality time with these children. Most conferences seem to be targeting other clinicians and medical professionals. The lack of parent friendly, practical information that came from many of these conferences was astonishing. Over the past few years, the trend has changed significantly. Fueled by parent friendly organizations such as Autism Education Network and Parents Helping Parents many conferences seem to have a much more practical approach that allows parents to apply what they’ve learned in the home

California's Next Governor

I don’t know what to make of our political situation. The race for governor is probably the scariest thing I’ve seen on a state level in a long time. Well, at least since I heard there was a push for Schwarzenegger to run for governor…
On one side, there is Jerry Brown…The last time Jerry Brown was governor of the state, I was in high school. Politics was not my game at that time and I really can’t recall much of what was happening. I do remember that Jerry Brown drove an old Ford, perhaps a Galaxy 500 and he refused to live in the governor’s mansion. At the time, it seemed really cool but now it seems gimmicky. I also remember that we had really bad economic times however I think the entire country was in a recession so you can’t really blame that on him.

As Mayor of Oakland he didn’t do much…But it was Oakland!! What a thankless and hopeless job that is…so you can’t really blame that on him. (…Starting to sound like a campaign slogan, “Jerry Brown, well you can’t really blame it on him.”)

His stint as Atty. General was not very inspiring or memorable.

I like Jerry Brown as a person, I like his passion and commitment to civil rights. I am also not sure he is assertive enough on issues surrounding education, housing and the poor. I’m not real thrilled about the recycling of the old guard.

On the other side there is Meg Whitman. A former CEO who says she can put the state back on course with a new fiscal strategy. At the same time, she spent $90,000,000.00 on her campaign so far. That’s her money, what’s she going to do with other people’s money?

She refuses to join in an open political debate, which really concerns me. She spends $1 million each month on advisors that help develop ugly negative ads about her opponents. She is anti-labor, pro-corporation and has no political experience. (It reminds me of when Schwarzenegger announced he would enter the race for governor. I had several friends who said his lack of political experience was a plus. Still think so?)

Meg Whitman undoubtedly had to deal with the politics of her Board of Directors at EBAY, but that’s it. Most others she came into contact with, she was able to instruct them on how things should and would be done. Try that in Sacramento.

What about her add stating that she would enlist the Nation Guard to secure California Borders? Is it just me or does that scare anyone else?

Do I vote for Jerry Brown because he is the lesser of two evils? What choice do I have?

It’s a dark time for California politics.

If I Had $90 Million

...and really wanted to help.

If I had $90 million, I would probably do what I'm doing but more of it. When people talk about the satisfaction you receive from giving to and working for your community, they couldn't be more right. It's not easy work; building alliances and concensus rarely are but it is meaningful and fulfilling in ways that are hard to replicate in other professions.

First of all, I'd look to support community service agencies that were providing much needed programs and resources to our citizens. There is this little organization in San Jose called One Step Closer, Therapeutic Riding that I really admire. The owners, Mark and Landa provide therapeutic riding classes for disabled children. Their dream is to expand the program to include work with disabled veterans. It's a small operation with a huge positive impact and even more potential. I'd support them with part of the $90 million.

I'd set up a foundation that helped develop and seed local community advocacy programs. Everything from neighborhood beautification and improvement councils to community based conflict resolution and mediation programs.

I'd work with local school districts to enhance community involvement and participation in the educational process. Our schools would benefit tremendously from more involvement from Silicon Valley corporations. Being able to assist in educating the children of our community should be a priority to both parents and local businesses.

I'd work with representatives to change the state constitution removing the ridiculous 2/3rds majority rule.

I'd establish stipends and scholarships for students entering teaching professions.

I'd establish stipends and scholarships for students entering therapeutic professions.

I'd establish stipends and scholarships for STEM programs.

I'd establish an endowment for small business owners

There are lots and lots of things I could think of. But I would never consider buying the governor's office.

Chapter 15: The Medical Establishment and Public Schools

What adds to the struggles of parents and caregivers is the obvious disconnect amongst the professionals in the field of autism. Public schools and the medical establishment are at odds when it comes to the best practices for establishing the individual education plans necessary for planning and tracking the progress of our children. Parents will have their child’s assessment done at a hospital or through their medical provider. That assessment will “prescribe” x-number of hours of occupational therapy per week, and x-number of hours of speech therapy per week amongst other things. The parents take the assessment to the local school and insist that the program be implemented and followed as prescribed in the medical assessment. The schools, which almost always lack the resources to provide the most basic services, will inevitably deny that the treatments prescribed in the medical assessment are truly necessary.

It’s like having a prescription that no pharmacy will fill. After all, the medical professionals may have prescribed this treatment but they can’t make the schools abide by it. For many parents, this is the beginning of a very long, very painful and sometimes expensive process. Unfortunately, this is a time sensitive issue. The only thing that everyone will agree upon is “that early intervention is the critical to the success of our kids.”
It’s an interesting dynamic. The medical community relies upon the public schools to make the initial diagnosis; a diagnosis they won’t make. Only after the public school says that the child has autism, will the medical community act. Once the medical community accepts the schools assessment, they won’t confer with the schools to determine the best treatment for the individual. It seems to me that if you rely upon the schools to make the assessment, you might rely on their input for the treatment you’re prescribing since they will ultimately be responsible for implementing it, right? Perhaps I’m being naïve.

Even more interesting is the response from local medical school professionals. In my later attempts to establish a program utilizing the interns and mentors from local universities to work in homes and schools in our area, we came to an impasse regarding the supervision of interns with a clinical background. A local university representative told me that we must provide proper supervision for interns for a specific amount of hours per week. I told him that we would use the school district’s psychology staff to provide supervision and support to the university students. The university spokesperson said, “I doubt the school district’s psychologist are qualified to supervise our interns”. Not qualified? These are the people that made the initial evaluation that started us down this road. The evaluation that our well respected and very well qualified pediatrician affirmed and responded to. These are the people we were told could and would make the assessment that our doctor would not. These people aren’t qualified to supervise your unlicensed college students? Perhaps I'm being naive.

The relationship between public schools and parents of children with disabilities is often strained and sometimes volatile. As the parent of a child with autism, you are sometimes isolated from the normal support networks that most people take for granted. Parents will see their extended family and friends slowly grow distant. In some cases, families experience a self-imposed isolation. Their child’s public behavior may be too difficult to deal with on a consistent basis so they don’t go out as often.

In other cases, family and friends don’t know how to help or deal with the challenges you’re facing so they tend to stay away. I know of one father who says his brother and sister in-law were embarrassed by his son’s public meltdown at a local shopping mall. They haven’t gone out together in over four years because of that incident. No matter what the cause, the isolation that families experience can have a devastating affect on everyone concerned.

The fact is there is only one entity that has a legal obligation to assist parents with the challenges of helping their children succeed; their local public school. The medical community can’t offer you the necessary resources, you may not feel supported by family and friends, you may not have the financial resources to hire specialist and therapist but the one thing you know is the public schools are legally required to provide the resources necessary to educate your child. So, public schools become an outlet of frustration for many parents. Added to this volatile mixture is the inflexibility of our public school system, the under funding of public schools, poor teacher/staff morale, lack of resources and knowledge regarding autism and a 600% increase in autism rates over the past five years in our valley and the relationship between parents and schools is set up for failure.

When our state representatives talks about cuts to public education, you must understand that these cuts extend far beyond the classrooms, campuses and school yards.These cuts will be felt in our neighborhoods and in our homes.

The Autism Project Silicon Valley


The Autism Project, Silicon Valley works to assist individuals, coalitions, groups and networks that empower the community to effectively participate in the decision making process. We accomplish this in the following ways:

1. Provide training(s) on the concepts and practices of advocacy.
2. Assist in building coalitions and networks that work on addressing social justice issues.

3. Preparing Community Advocates who can support other groups to include advocacy in their programs.

4. Helping concerned individuals and groups develop their advocacy campaigns.

The Autism Project is offering an advocacy workshop for individuals, caregivers, guardians and service providers from 10:00am to 5:00pm on Saturday, August 7th at the Silicon Valley Independent Living Center; 2202 North First Street in San Jose. This workshop is being provided Free with the support of the SVILC.

Workshop Agenda:

-Advocacy: Historical Perspectives

-Rules of Advocacy

-Independent vs Systemic Advocacy

-Role of the Advocate

-Nature of Conflict

Though our focus is disability and educational advocacy, the rules and guidelines for successful advocacy efforts are universal in their application. Whether you advocate for cleaner streets and neighborhoods or for greater accessibility in our educational institutions, this workshop focuses on the techniques and skills required for successful advocacy.

There are 20 spaces available for this workshop and reservations are first come, first serve basis. Please RSVP to theautismproject@sbcglobal.net by August 1st.

This is not a legal seminar.
Contact

Brian Miller
Executive Director
The Autism Project, Silicon Valley
theautismproject@sbcglobal.net

Visit Us Online at:
http://www.tapsiliconvalley.org/
http://www.specialneedsdirectory.org/